Chemo in the Fast Lane

This is a lengthy science post I have been debating whether to write for over a year.  Many fellow patients have been asking me to write it but I have hesitated.  Why debated? Why hesitated? At the root of ANY science post I write, I have to believe in my heart that the possibility of harm is vastly outweighed by the possibility of good that could come about by me sharing my personal experiences and scientific thoughts – which like any scientific discussion, does involve a certain amount of conjecture and hypothesizing.

With my most recent chemo rounds and the subsequent end of my THE POWER OF STAGE IV CANCER HOPE post mentioning a FOLFIRI side effect amelioration theory I was following up on, I think I have now hit the point where my personal observations could potentially help some people – so I decided to pull a trigger on the post.  I truly hope it could help some people with the often debilitating side effects of chemo – but with an emphasis on the word “hope” – this post is based upon preclinical data which to be clear does not always (in fact often does not) translate to the same profile in humans. But… I believe there are clues of successful translation in my own mad scientist body that I can share – once again with a caveat these observations are only anecdotal and potentially would not be seen in other patients.

The subject of the post is something that is actually talked about A LOT in cancer patient online groups: the potential benefits of fasting during chemotherapy.  This is not a minor topic of discussion.  Chemotherapy, even with its better side effect management now days via many recent & improved co-therapies, can still be debilitating in many patients.  This can not only affect their quality of life but if not controlled, even cause dose reductions or treatment cancellations that can directly then impact prognosis and survival length. So side effect management is a very serious topic.   For the non-patient readers in the audience, the gravity of the situation in some patients and the need for additional ways to potentially address it is probably underestimated and unrealized.

Before I get into the published preclinical data and my personal observations, a few very important things I need to explicitly point out.

  • I am not a MD – in no way is this post intended to give medical advice, either in general or in the case of any particular patient. It is purely informational of the scientific literature and my personal experiences.
  • I will be discussing preclinical research and anecdotal observations in my own body – it is very possible that either or both will not translate the same in another person’s body
  • Do not fast without both informing and getting medical advice from your MD/medical team.
  • Do not fast if you have trouble maintaining weight

OK then, ready? Here we go…

Professor Valter Longo

The scientific hypotheses & related research I’ll be presenting have largely been led by Prof. Valter Longo although it has been replicated by independent labs as well.  Prof. Longo is a professor at the USC Davis School of Gerontology with a joint appointment in the department of Biological Sciences.  He also serves as the Director of the USC Longevity Institute.

The purpose of a blog is not to go into every small scientific detail – I’ll be presenting the major themes, data and hypotheses primarily from his research in layperson language – but I will hyperlink multiple publications which I encourage people to download if they wish to consider a medical discussion with their MD/medical team.

The Basics of the Preclinical Science

First of all what is “Fasting”?  Fasting is essentially “short term starvation”.  The key phrase here is “short term” – when people think of fasting or starving, they picture the effects of long term fasting/starvation as shown in the picture below (after 24 weeks of limited nutrients).  In contrast, “fasting/short-term starvation” is on the order of a few days, something that many ancient traditions and religions do on a regular basis. When you deprive the body of nutrients, even for a short amount of time, this sets off an entire series of biological effects.

starvation-experiment-7-health

What happens when the body becomes short-term nutrient starved? I am not going to go through the scientific details in this blog – they’re quite complex. I will be hyperlinking a number of articles and if you are curious for the details, I think almost all of the articles are available for free.

Here is what happens in general terms however.  Normal cells are smart. If you became nutrient starved what would you do?  You would probably hunker down, conserve your energy, lay there nice and quite – in a way like hibernation.  This is what normal cells do.  They quiet down from dividing when they become nutrient starved to conserve their energy until the next round of nutrients arrives.  Cancer cells in contrast are dumb. They are permanently turned on and greedy. Even if nutrients are removed, they continue trying their hardest to grow and divide even if it becomes more and more difficult to do it.  They don’t care.  They just want to keep trying to grow and divide no matter how hard it gets – no conserving energy for them.  They would rather die trying to grow than take a break.

In the photo at the top of the post, cancer cells are the rabbit and normal cells are the turtle. The rabbit thinks he will win the race no matter what, because he can go (divide) the fastest.  But sometimes in the right circumstance, the turtle, willing to go slow, wins the race. It is hypothesized that that is what happens in the scientific data below.

What fasting-cancer data did Prof. Longo and other labs generate? I am going to go through a series of papers (with hyperlinks) to show the preclinical and clinical data published on fasting and cancer therapies so far.  Strung together, it is an intriguing story.

1.) Raffaghello, L. et al. (2008) Proceed. Natl. Acad. Sci. 105(24), 8215-8220 In this study, reducing chemo side effects via fasting was the main focus.  The researchers gave mice a 48 hour fast prior to a high dose of the chemotherapy etoposide (80 mg/kg). 10/23 of the mice who did not fast died due to chemo toxicity.  The mice without fasting that lived also showed signs of toxicity including: reduced mobility, ruffled hair & hunched posture. In contrast, in the fasted mice, only 1/17 died. The fasted mice also showed no signs of stress or pain.

2.) Changhan Lee et al. (2012) Sci Transl Med. 4 (124), 124ra27.  In this study, enhancing the efficacy of chemo via fasting was the main focus.  They found that fasting retarded tumor growth and increased the effectiveness of chemotherapy as well as significantly extended survival times in various animal models (Breast (4T1, MDA-MB-231), melanoma (B16), glioma (GL26), neuroblastoma (NXS2, Neuro-2a, ACN), ovarian (OVCAR3) using the chemotherapy agents: Doxorubicin, cyclophosphamide and cisplatin (depending on model).

3.) Bianchi, G. et al. (2015) Oncotarget. 6(14), 11806-11819. In this study, they examined the impact of fasting + oxaliplatin in the CT26 CRC model via micro-PET analysis and tumor growth. Micro-PET analysis analysis showed the combination of fasting + oxaliplatin gave the lowest tumor glucose consumption which then correlated with the most retarded tumor growth.

4.) Caffa, I. et al. (2015) Oncotarget. 6(14), 11820-11832In previous studies, it was shown that fasting was synergistic with cytotoxic chemotherapy infusions.  But what about targeted agents like EGFR, ALK or other kinase inhibitors like regorafenib? They examined the impact of fasting on the use of targeted kinase inhibitors in two models: the H3122 animal model (EML4-ALK driven Non-Small Cell Lung Cancer, treated with crizotinib) and the HCT116 animal model (KRAS-mutant CRC, treated with regorafenib). Similar to the case of fasting with cytotoxic chemotherapy, a fasting cycle of every 2 weeks, while maintaining daily targeted inhibitor therapy, produced the greatest reduction in tumor growth in both the H3122 (NSCLC) and HCT116 (CRC) animal models.

5.) Pietrocola, F. et al. (2016) Cancer Cell. 30, 147-160. In this intriguing study, they looked at the impact of the immune system on the fasting-based anti-tumor effects when done in conjunction with the  immunogenic chemotherapy oxaliplatin.  The fibrosarcoma MCA205 model was examined in mice with both competent immune systems (C57BL/6 mice) and compromised immune systems (athymic nu/nu mice).  Only in the mice with full immune systems were either oxaliplatin or fasting efficacious in this model.

6.) Safdie, F. M. et al. (2009) Aging. 1(12), 1-20 and Dorff, T. B. et al. (2016) BMC Cancer. 16, 360.  But what about Clinical data?  These two studies are the first studies of fasting + chemotherapy.  In the first study, 10 patients with different types of cancer & chemotherapy regimens performed fasting when they did their chemotherapy cycles.  6 out of 10 patients could directly compare side effects between fasting and no fasting.  They reported a reduction in fatigue, weakness and GI-side effects. Fasting also did not appear to prevent chemotherapy induced tumor shrinkage or tumor markers. In the second study, 20 patients were tested at the USC-Norris Comprehensive Cancer Center (NCT00936364).  Fasting for up to 72 hours (48 hours pre-chemo infusion + 24 hours post-chemo infusion) was found to be safe and feasible in patients receiving platinum-based (cisplatin or carboplatin) chemotherapy cocktails. Although both preliminary clinical studies look promising. a randomized trial would be needed to conclusively determine fasting impacts on both side effects and chemo efficacy.

So the literature story summarized:

  1. In animal models, fasting appears to both reduce chemo toxicity as well as increase chemo efficacy.  It also appears to increase the efficacy of targeted kinase inhibitors.
  2. In preliminary clinical studies, fasting appears to be safe in conjunction with chemotherapy and does not have obvious negative impacts on chemotherapy efficacy.
  3. Overall: It appears that the smart hibernation of normal cells when deprived of nutrients protects them from being killed by cancer therapeutics whereas the dumb cancer cells, still trying to divide, are hit with a double whammy of expending a lot of energy while starving (which hurts them) and being attacked by the cancer therapeutic at the same time.  Some of the animal models showed a more significant effect of fasting than others – but in no cases did the addition of fasting, either for cytotoxic chemotherapy or targeted kinase inhibitor therapy, reduce the effectiveness of treatments.  The translation of animal model data to clinical data is unknown but all published preclinical and non-randomized clinical data to date is consistent and appears to show that fasting will not impede drug efficacy and may potentially improve it while also potentially reducing side effects.

2015-03-22_What the Heck is anti-EGFR Therapy_Mad Scientist

Time to Get Personal – a Science Experiment in My Own Body

The Drug Cocktail: FOLFIRI

The chemotherapy cocktail FOLFIRI contains the cytotoxic drugs 5-FU and Irinotecan.  Some of the well-known side effects of FOLFIRI include: Hair loss, barely controllable diarrhea (due to its component drug Irinotecan – thus giving it its nickname “I run to the can”), skin toxicity, mouth sores, esophagus pain, nausea/vomiting and fatigue.  Most of these side effects are due to indiscriminant killing of epithelial cells, regardless of whether they are cancerous or benign.   I don’t think that list is complete but it covers the major stuff – as you can guess the “toxicity window” of FOLFIRI is just a smidgen small {cough} – but that is the world of traditional cytotoxic chemotherapy!  FOLFIRI is active however in many CRC patients (including me!) and it extends lives of many CRC patients (including me!) but… it does come with some significant toxicity costs.

Time to Put the Scientific Theory to Test (i.e. in Me!)

Every patient is different.  I’ll explain & describe to you the observations I have made in my body over the course of a number of different experiments/data points.  But the same clinical pattern will not be seen in everyone. The observations I have made though have convinced me that in my body fasting significantly reduces toxicity/side effects.

I’ve taken the FOLFIRI chemotherapy cocktail in three separate rounds:

  • From 10/2012 – 1/2013 (non-fasting)
  • From 11/2015-5/2016 (fasting with an internal non-fasting control experiment)
  • From 8/2016-present (fasting with an internal non-fasting control experiment)

My FOLFIRI Round #1 – the non-Fasting Edition (10/2012 – 1/2013)

The first time I took FOLFIRI (10/2012 – 1/2013) it was rough. Very rough.  I lost a significant amount of hair. I had barely controllable diarrhea. Many of my epithelial cells had significant pain (e.g. esophagus, mouth, skin on my feet).  It was not a therapy I wished to ever return to. But I soldiered through it.  In Stage 3 CRC you are going for a chemo cure.

This side effect profile is actually one of the major reasons why I delayed doing FOLFIRI so long once I was Stage IV and a chemo cure was no longer possible.  Signs of recurrence were first seen on scans in August, 2013.  Normal standard of practice would have put me on FOLFIRI (or its even harsher chemo cousin FOLFIRONOX) immediately.

As you can see, I did everything I could to delay starting the harsh chemo of FOLFIRI until 11/2015 – over 2 years after Stage IV spots first appeared on CT scans!  Part of the reason behind the delay was that I had a slow growing cancer and I didn’t see logic in putting it under evolutionary pressure to become much more aggressive to escape chemo.  But another big reason was I remembered all those side effects listed in the previous paragraph.  I felt 100% healthy.  I absolutely dreaded returning to those side effects by choice/necessity….

Thankfully I came in contact with Prof. Longo’s research into fasting and chemo.  Research that has since been replicated in preclinical models by multiple research groups.  Looking at the multiple preclinical papers and the (safety & non-chemo interference) clinical papers that have been published, the scientist in me was convinced enough that there was a possibility it may translate successfully to humans, that I had to give it a try.

So give it a try I did.

fasting-be-back-soon

My FOLFIRI Round #2 – the Fasting Edition (11/2015 – 5/2016)

Prof. Longo’s preclinical research incorporates fasting both pre-infusion (to given benign cells a chance to slow down and hibernate before chemo attacks) and post-infusion (to make sure benign cells don’t come out of hibernation & wake up in the midst of chemo).

Logistically, I am lucky compared to most CRC patients when it comes to attempting this in practice.  Most CRC patients have to come home and wear a 5-FU chemo pump for 2 days after their main infusion is done.  If you added up all the time required to cover both pre-infusion + infusion + 2 day chemo pump – that turns into a 4+ day fast very quickly.  Not impossible but… very hard.

In contrast, I made the choice to have my 5-FU dosed as a bolus injection during infusion and not take home a pump.  In clinical trials, the pump method gave better efficacy results – that is why it is standard of care.  Why did I chose to do it bolus?  For quality of Life reasons, which I am always working to balance with quantity of Life.  I hate the pump.  More importantly to me, my kids hate the pump (it freaked out Amelie when she was 5).  So I made the personal decision, if my cancer can be controlled without a pump, I want to at least try.  And I was lucky, FOLFIRI without pump it worked in my case with significant tumor shrinkage.

How long do I fast? I fast a total of 60 hours.  36 hours pre-infusion and then 24 hours post-infusion.  I actually find this length completely doable.  Sure, I am a bit hangry at about the 24 hour mark – but then the nausea of infusion takes over and I assure you, eating is the last thing I want to do anyways!!  By 24 hours post-infusion, if I fasted, nausea has subsided and I have a huge appetite to break my fast at the 60 hour mark.

Do I eat anything during my fast? No.  I drink water and because of my caffeine addition, I drink some black coffee each morning.  But absolutely zero nutrients are ingested.  I break my fast with a big lunch 24 hours of after my infusion.

Impacts on weight? I intentionally eat large volumes the other days of my chemo cycle to compensate for not eating at all those 60 hours.  Weight loss?  On average I have gained 1-2 pounds every month doing this fasting regimen.

Now the big question… impacts on side effects?  Yes on most! All positive.  Little hair loss.  No mouth or foot pain.  Zero diarrhea. Esophagus pain dramatically reduced. The only significant side effect remaining is fatigue – but in the universe of chemo side effects, fatigue is not the end of the world.  I can handle requiring daily naps more than I can uncontrolled diarrhea!

An internal positive control experiment: In the middle of this FOLFIRI time period, I needed to give a blood draw for my personalized immunotherapy project.  For that blood draw, I wanted to have my blood counts as high as possible so instead of fasting, for that infusion I ate a very high protein diet all the way up to infusionWhat happened? The biggest thing I noticed was about a day after infusion, I woke up to my entire body’s skin feeling like it was on fire being chemical burned.  A few days later the diarrhea hit. The next infusion I went back to fasting… those side effects went away as well.

My FOLFIRI Round #3 – the Mixed Edition (8/2016 – current)

The first infusion after my summer break I had an immunotherapy project blood draw so I was non-fasted for this first infusion.  It was by far the worst infusion I have ever had.  In bed for days.  Uncontrollable diarrhea for days. I lost 8 pounds in 2 weeks.  Hair started to fall out within days.  It was horrible, aside from some brief glimpses of Hope.  I couldn’t wait to do the next infusion with fasting, which I did.  That next infusion: much less bed time and ZERO diarrhea! Hair loss largely went away. 🙂

So in summary:

  • FOLFIRI ROUND #1 (no fasting): Horrible side effects
  • FOLFIRI ROUND #2 & #3 (fasting): aside from fatigue, minimal side effects
  • Internal control experiments (temporary stop of fasting): return to horrible side effects

So those are my fasting observations in my own body.  The pre-clinical papers went on to say that not only are side effects reduced but anti-cancer efficacy is increased.  There is no way for me to know how my efficacy is being impacted by my fasting.  But as a scientist, I’m willing to take a chance in my own body and follow the preclinical science.  So far I have responded to FOLFIRI (without pump) and it is controlling my cancer.  Am I responding better or worse than I would have without fasting?  I’ll never know.  All I do know is:  I am not sure I would be able to handle FOLFIRI with its non-fasting side effects…. and if that required dose reduction or worse case, I had to quit it altogether due to side effects – that would be the ultimate loss in anti-cancer activity… A travesty to my treatment plan because there really isn’t much out there for CRC once you fail FOLFOX, FOLFIRI & Erbitux – the remaining lines of FDA approved chemo have low response rates.

So this “science experiment” into a parameter not studied in a CRC clinical trial may have truly significant consequences, hopefully good but potentially bad.  Stage IV cancer is not for the faint of heart.

Potential DANGERS to 5-FU Pump People

As I said, most CRC patients on the front line chemotherapy cocktails FOLFOX and FOLFIRI, wear a  5-FU take home pump.  This presents some potential dangers if they attempt a fast for 36-48 hours pre-infusion and 24 hours post-infusion.

  • Including pump time – that is a very long fast and maintaining weight (which is very important) may not be possible.
  • If a patient starts the fast but needs to break the fast during the pump still infusing, according to Prof. Longo, in theory this could lead to liver toxicity.

So, if you are contemplating trying fasting with the pump, take the two above concerns very seriously as you prepare to talk to your MD for medical advice!

Just to reiterate one final time – I am not advising anyone to follow my lead.  I am only describing the preclinical literature and what I observed in my own body.  If you chose to try to fast during chemo – the important things to remember are: to inform and get medical advice from your Doctor and stop fasting if you can’t maintain weight.

Added 10/1/2016: I have already heard back from a number of fellow patients who have had the same positive side effect results experience as me (and also had fast/no-fast control experiments to indicate fasting cause/effect).  If after getting medical advice from your MD (!) you have tried fasting, please share your experiences by adding it to the comments **here on my blog site** (you can use pseudonym if you want for privacy) to have all the responses in a single thread.
Citizen-science n=1 trials with real-time reporting of results. Not as ideal as a randomized trial to prove cause and effect but I still love it!

Fasting is a part of many ancient cultures – perhaps through Prof. Longo’s thorough and carefully done scientific research, it may be a part of modern cancer treatment protocols one of these days too.  It certainly is now a part of mine

58 Comments on “Chemo in the Fast Lane

  1. hi there and thank you for another interesting blog entry. I am a fellow stage 4 CRC patient, tomorrow is my fifth infusion or Iritotican and Avastin, in addition to the two week course of Xeloda. I wish I had read your entry earlier and if I had 36 hours before the infusion I would have tried the fast. My side effects are terrible, almost all hair is gone, but the worst is the diarrhea. The doctors are unable t help, aside from having lowered my dosage of Irinotican by 20% and Xeloda by 35%. With little effect.

    Anyhow, my question is: you write that for “Stage IV and a chemo cure was no longer possible.” then, in your view, does it make sense to get tortured in such a way by chemo? What is the benefit? (I understand that you got your tumors shrinking, why is it not possible for the chemo to eliminate them?). even though I technically have no tumors in my body now (one small lesion was removed from the lung before this line of chemo), I heard something similar from my oncologist (90% chance of tumors returning with or without chemo). Isn’t the chemo overkill, if the efficacy is so minimal? Just trying to plan for the next time (hoping of course it will not be needed:)

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    • You touch on the BIG question of all inoperable Stage IV patients – quality vs. quantity of life when making treatment decisions (because final decisions are up to the patient!). That is a personal decision that all patients make for themselves – I know people along the entire spectrum. My own decision was to do chemo (with its side effects) in order to: 1.) Be alive longer for my 2 young kids 2.) Be alive longer (I call it “treading water”) to allow scientific research to proceed to generate better immunotherapy options. BUT… I don’t ignore quality of life… there is a limit to the side effects I am willing to endure. So I think I take a relatively balanced view but probably tilted more toward quality of life than the average.

      To answer your question: chemo can sometimes partially (but not fully shrink) tumors because tumors are heterogenous. There will be a mixture of cells – some chemo sensitive, some chemo resistant. The proportion will determine what percent shrinkage you can achieve,

      Best of luck to you!
      Tom

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      • Thank you Tom. Your blogs are always inspiring hope in me (unlike the visits to my oncologist who keeps depressing me by citing general statistics in answering my questions). I totally agree with you: I also have to young kids (14 and 5) and I need to be around for them as long as I can; on the other hand, the debilitating side effects often preclude me from doing anything with them. So, it’s a tough call chemo or no chemo, especially if the efficacy of it is so dicey. My onc basically admitted that it it like shooting blindly and hoping to hit the target. No knowing until the next scan (my CEAs are not good predictors, always low with minimal variety).

        I am waiting for the Longevity trail to start. I live in LA so it would be a convenient location. Thanks again, and keep up you great work.

        Best of luck to you and your adorable family!

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  2. This is extremely interesting. I hope others will realize similar results–after consulting their doctors. Great blog!

    Liked by 1 person

  3. Thank you so much for sharing this information, Tom. You are gifted at explaining both the research and its practical application. My 39-year-old son (who also has 2 young children) was recently diagnosed with stage iv colorectal cancer – metastasis to his liver, and is on his third FOLFOX round with the pump (he has one more round after this one, then 5 weeks of radiation, then surgery). He has trouble keeping weight on already, so I don’t see how he could fast for 6 days out of every 12 days, but he also does not have the horrible side effects you experience. But this article is something I know he’ll want to know about for his subsequent rounds after surgery is over, if they don’t keep him on the pump. We are also following closely on the progress for the vaccine you have blogged about. You have blessed us so much with your messages of hope. I know you lost your mom to cancer (as did I), and I have felt compelled by the Holy Spirit to stand in the gap for you as well when I pray daily (and often) for my son. May God richly bless and heal you.

    Liked by 1 person

  4. Tom, thank you very much for sharing your knowledge on the fasting topic.
    I think it is very good that you have written about it.
    Fasting is one of the things which we were considering from the very start of treatment. However in case of pump (especially when you get it every cycle for 1.5 year) it is not easy to fast. As far as I remember the clinical trial with fasting ( has started in 2015) and if the patient was not able to fast doctors recommended him/her to take just vegetables.

    My husband is not able to fast having infusions with pump but he eats only as much as he needs (it is really very little amount of food) and mainly cooked vegetables. Fortunately he never had symptoms like vomitting and diarhea, but of course he always feels weak especially after chemo (2-3 days) and then he is mainly resting.
    Maybe this is also because we have introduced a diet full of eco-vegetables, a lot of buckwheat, millet, burgul and a bit of meat (eco-poultry) and some eco cheese (white goat and lamb). Besides he eats also supplements such as curcumin, resveratrol, green tea = ECGC (we have searched for those with the best, in our opinion, properties like amount of active substances and absorption profiles, since it matters too).
    So summing up, he is not fasting during chemo cycle, but eating light and fortunately does not experience unbearable side effects (which you have described above).
    Maybe our experience will help the patients on pump who are not able to fast?
    kind regards
    Katarzyna

    Liked by 1 person

  5. I just love this post Tom and am so happy for anyone already researching the pros and cons of fasting to find all the information here. You have so succinctly reported the reason why I have fasted for 21 of my 33 treatments so far (60 hours with pump). I also felt I was taking a more aggressively active role in my healing. I too experienced vastly diminished side effects and as you say, who knows to what ultimate advantage as far as increased response to chemo, but we live with hope. Thank you.

    Liked by 1 person

    • Shanbrock6 when do you start and stop your fast with the pump? I have to do the 5 FU pump because of a DPD deficiency. I just had my first round of FOLFURI and it was awful. Throwing up and pooping to clear liquid. Three days out I don’t know if I can face another. The day of infusion would be no problem fasting don’t want to eat a thing or the next day either.

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      • I had treatments on Tuesday. I would eat a big family dinner Sunday night then Monday just black coffee, tea and water, same for Tuesday infusion day. I would break the fast gently on Wednesday and be eating properly again by Thursday when I was deaccessed. I tried to eat a lot in between as my Dr’s were fully supportive as long as I maintained weight but after 6 months I was down about 14 lbs, quite liked that though!

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  6. Thanks for an interesting post. My mom is currently on a trial of panitumumab and trametinib for her stage 4 CRC. She has just started and is already getting a number of symptoms (rash, fatigue, diarrhea). Do you think fasting can help in the same way? There is no pump, just an oral everyday and an infusion every 14 days.

    I love your blog, btw! Have been following for a few months. I’m a scientist myself (physics) and scour the clinical trials and journals to try to keep this awful disease at bay for her.

    Liked by 1 person

    • Hi Erin – glad you like my blog! Always nice to have yet another a scientist reader too!

      The one article (above) that looked at targeted agents in animal models were more focused on increasing efficacy not side effects. I have no idea if there would be a side effect improvement, my gut says no – but I do not know for a fact.

      Cheers,
      Tom

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  7. Great post. Thank you for your work.

    In the past I have done Folfiri fasted and the side effects were minimal – though the hair went quite quickly.

    After a 6 month maintenance break on Xeloda I did my first round of Folfiri unfasted last week. Simply because I forgot that I had fasted in the past. What a huge difference. This time I was sick as a dog and in a lot of pain. I will make sure to enter the next round on an empty stomach.

    I fast roughly 30-35 hours before the infusion and then remain on the fast until the end of disconnect day (which is only 10-12 hours until the end of the day). This comes out as about 4 days of fasting, i.e. first day of fast Tuesday, infusion on Wednesday, pump until Friday midday, break fast Saturday morning. I drink coffee and eat a spoonful of coconut oil here and there for energy. It’s rough but doable and a lot more acceptable than the horrid side effects.

    Liked by 1 person

    • Thanks for sharing your testimony Dudette! I am glad that fasting is helping you with your side effects as well!

      Take care,
      Tom

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  8. Tom I forgot to say how thankful I am that you wrote this. Gave me some hope when I really needed it that there is a way to ameriolate some of these side effects, I was thinking I don’t know if I can do this again. After reading it started a conversation with some others who are just starting Folfuri and doing a modified 500 calorie fast with the pump and it seemed to work for them.

    Liked by 1 person

    • Glad I hit the perfect timing for your Jane… please let me know how future infusions go as you modify your eating patterns. Citizen-science n=1 trials with reporting of results. I love it. Take care, -Tom

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      • I did a 4 1/2 day water fast for round 2 of FOLFURI with Avastin. My doc also lowered the Irinotecan dose from 50% round 1 to to 36.5% on the 2nd. (I am heterozygous for the UGT1A dose limiting mutation for Irinotecan. So, as I am responding at 36.5 % both my oncologists concur this is the right dose for me.) My CEA after round 1 went from 59.8 to 43.7. Second round with fasting and lower dose Irinotecan CEA went to 29.8. I had no diarrhea or vomiting round 2 fasting but I did not fast for round 3 and had no diarrhea or vomiting. All other side effects were the same. My CEA after round 3 without fasting was not as big a drop down to 20.9.

        I decided at this time that a water fast is too much for me because:
        1. I am on the 46 hour 5 FU pump and it is too long,
        2. I am and always have been a bit thin 5’6″ 113 lbs. I went down to 107 on the fast and have not yet put it all back on.
        3. It took me 2 extra days after pump disconnect to gain my strength back.
        4. I also lost an active day before chemo when I have a tennis game which means a lot to me.
        5. Perhaps because I am 59 years old my body doesn’t recover as fast as someone who is younger.

        I am trying to limit my carbs and eliminate sugars still the day before chemo and thought the infusion of Irinotecan and Avastin and until the end of the 46hr 5FU pump disconnect.

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      • Thank you for your added Nov 17 feedback Jane – important to hear (for some reason I couldn’t reply to that actual comment, why I did it up here)

        Best of luck moving forward! -Tom

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  9. Tom, great blog post. As usual, your writing is clear and thought provoking. Have you considered writing a book? I am sure that the book would sell many, many copies and improve many people lives. One day, hopefully many years from now, I will personally thank G-D for the opportunity to know you via social media and for all of kindnesses which you have shown to thousands and thousands of cancer survivors around the World.

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    • I agree that a book from Tom would be great. If you’re interested in Valter Longo’s work in gerontology and fasting, the English version of his book will be coming out soon. I know I’ll be checking it out.

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    • Hi Joel,

      Thank you for your very kind words – I have considered writing a book but I don’t currently have the time to write one on top of all my other “projects”. 🙂 I hope to one of these days. In terms of my personal story (including this post since I talk about my own experiment/side effects), I do try to construct the blog in such a way that if I am unable to write a book (or decide not to), individual posts could be combined in chronological order (of story told I sometimes do flashbacks to pre-blog days) to be an autobiographical series of essays that could be combined into a single volume. That way I can “work on a book” by simply writing my blog as usual….

      Take care, Tom

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  10. My experience with fasting is fairly limited to a single irinotecan infusion, but my side effects with that were far less than I thought they would be based on what people describe. I had no nausea and drove myself home followed by a long walk same day. Fatigue was barely noticeable and likely related to not sleeping well the night before and getting up 5 am to go to treatment. So, as far as I am concerned fasting works…

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    • I am a stage iv breast cancer patient who has also fasted with chemo. I decided to fast after reading Tom’s blog, writing him a note, doing a literature search, and discussing fasting with my oncologist.

      My experience

      The first fast I did was with Eribulin and I did a 36 hour pre-infusion fast. At the time, I received decadron (a steroid) as a premed for the infusion, and because the literature implies that the steroid negates the benefit of fasting, I would eat very small meals 24 hours post infusion, probably limiting total calories to about 600. I did this for two infusions.

      The first two fasts were very difficult for me. I was hungry and got headaches. My fasts were all water only fasts. But over time, they got easier.

      I was later able to convince my oncologist to eliminate the decadron so I increased my post chemo fast to 24 hours. I have to say, I felt great. I was able to do everything I wanted, with the only major side effect being slight anemia. I received the infusion every 2 weeks.

      I took a small break and then continued on Eribulin. This time the dosage schedule called for infusions every 10-11 days. I fasted the first cycle and had pain relief following infusion for a week. I didn’t fast the second cycle and my pain relief was four days. I resumed fasting and was able to get seven days pain relief.

      For me, pain relief indicates a chemo is working on my bones, so again, in my n=1 experiment I was happy. It should be noted that I had no major toxicity. Whether the fasting helped with overall efficacy is hard to tell as the tumor in my liver grew and there is no control.

      I continued to fast 36-24 post infusion while on Gemzar and Carboplatin. I made it through six full infusions with no dose reductions or major toxicities. For the first time ever a scan showed stable liver disease and although the report indicated progressive disease in the sternum, we decided to continue.

      In spite of fasting, things went downhill. I needed a blood transfusion for low red counts and I had severe uncontrolled pain. While hospitalized for pain control, my onc changed Carboplatin for Cisplatin and I was told I was well enough to receive chemo six hours later. I didn’t have time to fast.

      My response to that chemo infusion was awful. Red, white and platelet counts tanked. Moreover, they didn’t recover. My pain continued to escalate. Neuropathy, which I hadn’t had before, was out of control. Chemos were delayed and delayed and tumor growth continued.

      I’m still waiting to see how my story plays out. I’m currently on Xeloda so fasting isn’t an option.

      I’m looking forward to starting a combo chemo in the near future. Based on my limited n=1 experiment, I plan to fast.

      Like

  11. Hi Tom, Thank you for your writing – and for explaining your ethical concerns re the proper action to take. (I think you took the right action in writing!)

    I read the post last night and I am so appreciative of your explanation of the high stakes of managing side effects in terms on being able to tolerate the treatment or have the dosage decreased. Your description of the stakes at hand (washing out at a treatment and having few other option), is such an important piece of information to share with the world. That kind of perspective could really make a difference in patients trying this out as well as research scientists understanding how pivotal it could be in patient outcomes.

    It seems to me that so much scientific research is about deductive reasoning (testing out a theory) and gives short shift to inductive reasoning (detecting patterns in our observations and coming up with a tentative hypothesis). Although we have to be careful of our own biases in perception (as well as theorizing), it is a human ability to recognize patterns. I’m so glad that you collected “data” from your self experiments. I hope that as more people come forward, these anecdotal stories/experiments create increased interest in this area of research.

    I would hope that human trials on the subject of fasting would include comparisons for group using a fasting method that might work better for CRC patients on a pump. For instance a five day reduction to 80% of body’s caloric needs (while providing all nutrient needs). I don’t know if the intermittent (13 hour daily fasts with 100% of nutritional needs in remaining 15 hours) would be useful. These other options might help with any “deprivation factor”. And, of course, all under the supervision of an oncology team.

    Researchers might also find out that patients have a greater sense of control and/or hope with this method. And having a sense of control/hope can be a positive healing influence.

    Note: I’ve been doing the 13 hour daily fast for eleven weeks (I’m NED and not diabetic). I’m doing this as the intermittent fast has research showing it increases longevity as well as reducing cancer recurrence rates. and using this as a way to be healthier for the future). I’ll get my CEA numbers later this week.

    I definitely believe in “Home” experiments. Why wait until a researcher deems something of value? Why second guess our own abilities to notice patterns and to come up with reasonable, well considered theories and possible solutions? Even if there is a placebo effect going on (which I don’t think is true in your case), the fact that some placebo effects can help 10 to 30% is an amazing finding. The power of the human mind, spirit and body is really quite something.

    As is the power and reach of a researcher using his mind and heart for himself and others. May your body be restored as you play a waiting game with science to catch up to all the promise that is out there.

    Thank you.

    Like

    • Hi Annie,

      Very thought provoking post. I do want to add, though, that it is unlikely that intermittent fasting (IF) will result in the same benefits as water fasting or using a fasting-mimicking diet.

      For fasting to work, one of the necessities is switching over to ketosis. In an unrestricted IF, you will probably break ketosis every time you break fast. This will almost definitely stop expression of the protective pathways that normal human cells turn on during a fast, making normal cells more vulnerable to chemo.

      Tom even warned in his post that refeeding during chemo can lead to liver damage, so this is not something I would personally be willing to risk. Why not just do a full, real fast for the full duration of the chemo? I have water fasted for 12 days before, and found the experience rejuvenating. Sure, there are difficult moments (particularly in the beginning), but the payoff is so worth it.

      Like

    • Thank you for your well thought out and thought provoking comment Annie!

      I believe that research is underway into modified fast options, including e.g. those that are not zero calorie but still are nutrient starved, to see how they compare with total fast.

      All the best, Tom

      Like

  12. Hi Tom, thanks for another great blog. I’m back on FOLFIRI on Wednesday and for the first time will fast. I’ve always suffered terribly from nausea although meds control the actual vomiting. I am hoping this will help make me a bit more functional during treatment.

    Like

    • Hi Cait81 – best of luck to you. My actual vomiting (which was significant) required Emend (aprepitant) to control but the nausea remained. Ativan partially helped with the nausea but much remained. Fasting appeared to help with the remaining nausea in my case and I hope it does for you as well. Every patient is different in terms of response to both pharmaceuticals and fasting – I wish the very best for you. -Tom

      Like

  13. I am going to try fasting for the first time in preparation for the next infusion of Folfiri. My oncologist has given me the green light. I wear the pump and so far, my liver has been unharmed by the chemo. I do not want to break the fast while the pump is in place, even if the potential damage to my liver is theoretical. That would make a total of 4 1/2 days fasting if I can resume eating once the pump is removed? Can you break the fast once the pump has been discontinued or do you continue the fast for the rest of that final day? If I fast one day prior to the infusion, rather than the two days as described, will I still receive the benefits? Has anyone found a particular meal (vegetarian please) to eat prior to starting the fast that gave them sustenance to carry through the fast? I am looking forward to reducing the side effects. I pop lomotil like candy and I have opium when the diarrhea gets really bad, I would really like to reduce their use. Thanks for the information.

    Like

  14. Hi Tom
    I’m your opinion is fasting even possible while on xeloda which I’m taking for two weeks post infusion of irinotecan? I would like to try it but how would I break the fast and then keep taking xeloda?
    Thank you

    Like

    • Hi Joanna – I am not sure how fasting would be possible with a continuously dosed cytotoxic chemotherapy. I know there are people who try creative ways to try to facilitate xeloda but I won’t go into their ideas here since those types of efforts change standard of care too much for me to publish these other patients’ conjecture on my blog. I do my fasting with a clinically proven option of 5-FU dosing (bolus), it just is not the most common/highest efficacy standard of care form of 5-FU dosing (take home pump). Everything and anything you consider trying re: xeloda absolutely must be medically supported by your MD/oncologist, the same as my oncologist’s OK with my switch to bolus 5-FU.

      Tom

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      • Thank you Tom for your prompt reply. Since I have only one infusion left in this cycle I’ll have to pass on fasting I guess but I will definitely keep it in mind if I need to return on folfiri.

        I really appreciate your advocacy work on behalf of CRC patients. It’s so hard to navigate medical news, trials info, etc. and your thoughtful blog makes it so much easier to follow. Thank you for your work!

        Like

  15. Hi Tom
    Do you have any advise on what to take for diarrhea? I had surgery and lost a lot of weight so I cannot fast. I will try to eat less after chemo after reading this information.
    I work out to ease the effects of nausea, fatigue and pain. I am taking lomotil for now which is doing nothing. I am about to get round four of chemo in a few days out of six rounds.

    Tahnks

    Patricia

    Like

    • Hi Patricia,

      Since you have been having trouble maintaining weight, I don’t think you should even do a partial reduction in the amount you eat. It is very important to maintain weight and I have not seen convincing preclinical data showing a benefit of reduced food intake below a true fasting threshold. I am glad you are physically active!

      In terms of additional medications to control your diarrhea, make sure to inform your chemo care team and MD that you are having uncontrolled diarrhea. It is dangerous in terms of dehydration etc and they should have a flowchart of escalating drugs to try in order to bring under control under their medical supervision.

      I hope your side effects become better controlled & wishing you all the best,
      Tom

      Like

  16. I am so proud of you. You have found a way to fight back optimistically, and you shared your experience with others. You have encouraged me.

    Like

  17. This was a very interesting read, being a PhD-trained scientist myself with Stage III metastatic CRC. I actually had the opposite experience when I was on FOLFIRI, the days I was on treatment and couldn’t eat very much I actually experienced worse side effects. Although my side effect profile was not normal, I had the mild hair loss, nausea, and fatigue, but instead of diarrhea, I was constipated. I found that when I was able to eat a high protein, nutrient-rich diet while actively getting chemo, I handled the drugs much better. So although the science may be compelling, to me, it’s just as important to listen to your own body in order to give it what it needs.

    Like

    • Thank you for posting your experience Deanna. It reinforces what I mentioned in the column that every patient’s experience will be different and mine will not automatically translate to another patient’s. Definitely patients, if under medical supervision attempt fasting, should listen to their bodies and make decisions based upon that!

      Like

  18. After five weeks of intermittent hospitalisation for nausea, at the start of my adjuvant chemotherapy, I was diagnosed stage IV CRC, requiring fortnightly 5-FU (via take home pump) infusions for the rest of my life. Dreading the constant nausea and infirmity this could mean, I researched how best to mitigate the treatments, to maintain some quality of life for my family. Fortunately, I found Valter Longo’s credible fasting studies.

    I have since fasted around my chemotherapy for the past two years, with the knowledge of my consultant. The apparent results for me have been that I have avoided hospitalisation for side-effects. I also recover fairly quickly from each round of infusions. Any mild nausea I do experience is mostly easily controlled by medication (supported by a fantastic palliative care team).

    My personal belief is that I would not have otherwise managed to endure the treatments (which have included cycles of the very toxic oxaliplatin) or live as well with the cancer. I monitor my weight and although it went down initially, it has steadily recovered and has been at a healthy 10 stone for some time. As a former nurse, I am careful to avoid re-feeding syndrome (more of a risk because of my bowel surgery) by eating lighter meals initially. My body seems to have adapted remarkably well. My blood results, other than liver enzymes, have also remained in healthy ranges.

    The discipline of not eating for almost 4 days out of every 14 has obviously been tough. However, my burning desire to maintain a normal family life pushes me on. It will not be appropriate for everyone, but Longo’s fasting studies are definitely worth investigating. The important sense of control is also highly motivating.

    I have worked hard to hit the cancer with everything I can to make my body a harsh environment for it. Fasting has been a key part of this strategy.

    Tom has once again managed to thoughtfully highlight something of great value for cancer patients. I cannot thank him enough for his inspiring work.

    Best wishes to all and your families,
    Hayley.

    Like

  19. Pingback: Vasten tijdens chemo | Avonturen_in_het_ongeneeslijk_optimistisch_leven

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  21. Thanks for this review of the evidence Tom. I have an inoperable recurrence of bowel cancer – peritoneal mets – and happened on fasting before starting irinotecin and capecitabine palliative chemo. I’m RAS mutant so no cetuximab. Have fasted 48 hours before each of the first two sessions – but then had to eat because of the capecitabine tablets. So far no side effects worth speaking of – and had considerable ones with original oxaliplatin and capecitabine chemo. Oncologist and dietician interested though not able to recommend fasting – but I will forward your round-up of the evidence to them. Currently trying to decide whether to self-fund avastin which isn’t available on NHS but am thinking I would rather spend the money of first class travel, designer handbags and my daughters and granddaughter as long as I am feeling well! Does that make me a shallow person?!

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  22. marsilje, Thank you for your high quality self-testing and your intelligent and interesting diary. Who says that real research with human subjects can’t take place without Big Pharma investment? It just (in my opinion) takes a bit longer to accumulate reliable statistics.

    I have stage 4 rectal cancer with one met to the liver (the met was due to having to wait five years between colonoscopies while my symptoms were getting worse and the doctors ignored them). I have just taken 6 cycles of FOLFOX. after recovery I will have surgery, radiation, and another then another six cycles of chemotherapy.

    Today I gave my onc a copy of the Longo 2012 paper and copies of several popular science review articles on it. I also walked him through the expected effects of fasting throughout the chemo cycle on normal and cancer cells, creating a chart. This is my second mention of the topic with him, and he seems interested enough to read the paper (as he did a previous paper I gave him on alternating the steroids methylprednisolone and dexamethasone when needed in chemo cycles).

    Finally, I mentioned to him the problem of extended fasting with 2-day take-home 5FU infusion, which is part of my chemo. Can an otherwise healthy old guy (70) fast for 4 or 5 days every cycle? Maybe the solution is a partial fast, allowing low-caloric eating throughout, or perhaps a ketogenic diet based on eating fats and protein during the five days (switching the metabolism from glycolysis to ketosis). I wish I knew a reliable answer, based on other patients’ experiences. Again, thanks for your information!

    Like

    • Hi David,

      To start with, I am not an expert on gerontology or dietary science, so I honestly don’t know the answer to the question in regards to the ability of an otherwise healthy 70-year old to safely fast for that long. So to that question, I would defer and recommend getting the medical opinion (since it is essentially a medical question) from a MD. I do know some people doing the full fast over that length of time (but it is hard) – but they are younger and the patient numbers are small so I don’t think one can draw conclusions from their activities on average safety. I personally think even as a 44 year old, I would have trouble fasting for that length of time although that is just theoretical, I have never tried. I have noted that in one of the clinical papers linked above (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2815756/ ) some of the clinical trial subjects did have very long fasts without safety issue.

      In terms of how partial fasts/low caloric eating may behave as a compromise for patients with long multi-day chemo infusion, that may be the answer but data is lacking – although I have noted that in one of the above linked clinical papers (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901417/ ) – they defined fasting as <200 kcal/day and not zero kcal/day as I did.

      Thanks for your good questions – I wish I had more conclusive scientific answers for them. -Tom

      Like

    • David, your surgery might end with a colostomy. If so, and you need advise and encouragement, go to Inspire.com. There is an ostomy support group there, and they are wonderful. I prayed for you this morning.

      Like

  23. I am on the 5FU pump and found the 5 day mimicking fasting diet to work. Its basically a very high fat (~90%) / low protein and low carb diet, of about 500 cal/ day. . Dr. Longo, whom you cited above, is the key scientist involved in the research. His affiliated company, Prolon, is presently working on a Chemolieve, a 5 day mimicking fasting diet product specifically for patients on chemo! They are still in the research phase, though. I spoke with one of their scientist, and although they can’t reveal much of their research until the product comes to market, he did provide me with the link to a research paper stating basically what the mimicking diet is for chemo patients.

    Tom, let me know what you think of this research paper. And also how you heard of the Prolon product that Dr. Longo is developing for cancer patients, called Chemolieve?

    https://www.google.com/patents/US8865646

    Like

  24. Can I change fasting with ketogenic diet? Since by ketogenic diet cancer cell also starving. What’s your opinion?

    Like

    • Hi Aan – I do not feel informed enough with the University-level scientific research on ketogenic diets, to offer an opinion. I respect the thoroughness of Dr. Longo’s research approach, and it certainly improved my side effect profile, so I chose to highlight his scientific approach on my blog. – Cheers, Tom

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      • Tom, Yes, Dr. Longo’s research is certainly good science. But your implication that there is only one way to approach diet and chemotherapy, and that one way is Dr. Longo’s, is not the way science works. Any scientist can publish partial knowledge, or can deliberately (or not) ignore certain hypotheses.

        The question of comparing full fasting, mimicked fasting, and a ketogenic diet is a very important one, because it bears on whether patients can be compliant or not, and how difficult potential dieti therapy for chemo will be for thousands of patients in the future.

        Full fasting definitely reduces cell nutrition, while keeping the metabolism one of glycolysis, which is well understood. The current anecdotal results in humans is of great importance.

        However, ketosis (which is frequently confused with the spelling of ketoacidosis, a dangerous diabetic disorder) is much less understood. It is actually a different type of metabolism in which fats and oils are metabolized instead of sugars and starches. Ketogenic diets are confroversial for several reasons, but there is strong anecdotal evidence that it may help to reduce the incidence of diabetes, heart and circulatory diseases, and obesity. For these reasons, ketosis also deserves to be studied in relation to chemo.

        Like

    • The ketogenic diet is basically what Dr. Longo’s mimicking fasting diet is. Its a high fat(~90%) low protein and low carb diet of keeping the body in ketosis the days right before and after chemo.

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  25. “But your implication that there is only one way to approach diet and chemotherapy, and that one way is Dr. Longo’s, is not the way science works.” I actually do not think I implied any such thing. As a 20+ year PhD, I know exactly how science works… my point was as quoted “I do not feel informed enough with the University-level scientific research on ketogenic diets, to offer an opinion.” I simply said I was unqualified to offer an opinion to the original question, which is important for scientists to do – to openly acknowledge knowledge gaps.

    Liked by 1 person

    • I appreciate your scientific approach. Of course some of us who have cancer are anxious about the glacial slowness of the development and adoption of effective treatments.

      My current questions are: how effective are partial or ketogenic fasts to make chemotherapy more comfortable and effective? How are the current general immunotherapy trials going? Will customized immunotherapy (for the individual and his or her cancer) ever be developed and studied? It’s so frustrating that many doctors can’t imagine anything better than chemotherapy, radiation therapy, and tumor/surrounding tissue resection. Someday that approach may seem as barbarous as trepanning or bleeding is now considered barbarous.

      Like

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