Carboplatin-Taxol + Keytruda - Thread to Share Your Experience
Hi Everyone,
Next week I will start a 24-week regimen of weekly Carboplatin/Taxol with Keytruda once every 3 weeks for 12 weeks. I understand this is the newest protocol for TNBC, so I thought it might be good to start a thread. I look forward to the chance for all of us to learn from one another!
Aleta
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Well wishes to all those on this new regimen. It wasn’t available when I was treated, so I hope it really works well for all the newbies
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Not certain what the treatment plan will be. See MO on Monday, September 20th. Waiting for Oncotyping. I had a lumpectomy on September 1st. In reading the FDA approvals for the new protocols it appears that this is a neoadjuvent treatment. Hoping that isn't the case. I'll take any advantage I can get!
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I'm having neuadjuvant chemo, but there are ongoing clinical trials of Keytruda as a TNBC adjuvant treatment - might be worth sharing with your MO: https://www.cancer.gov/about-cancer/treatment/clin...
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Welcome, Everythingispossible! We're so sorry you find yourself here, but we hope you find this community to be a helpful and supportive place.
The Mods
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Thanks for starting this thread. I was just diagnosed with BC on September 13 and found out it was triple negative on September 14. I still have to have an MRI and a PET scan. I’m going to be starting neoadjuvant chemotherapy on September 29 with carboplatin, taxol and Keytruda. So I will let you know how it goes for me. I’m really grateful that this new protocol was approved in time for me to try it. After 3 months of this combination, I have 3 months of AC and continued Keytruda. MO is throwing everything at this. Hugs and prayers for everyone else who is on the chemo train.
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Hi Kendara,
Thanks for joining this thread! It looks like we are among the first to have this new treatment plan - 3 months weekly carbo/taxol with Keytruda and then 3 months weekly AC with Keytruda. I had my second infusion this week, and so far, side effects have been very mild. The worst thing has been constipation from the Zofran prescribed to treat nausea (that was pretty unpleasant, so be sure to take extra care with diet and have some over the counter remedies handy if they give you Zofran). I've also had mild fatigue - I don't usually take naps, but now they are part of my daily routine. No hair loss so far, but it's early days, I know. The infusions themselves have been easy - I actually slept through both of them due to the Benadryl they add in to stave off any allergic reactions. I'm told they will be reducing that going forward as long as I have no allergic reactions.
I'm told the effects will be cumulative, so I'm not counting on it being this easy for the duration and I'm doing my best to take advantage of these days when I still feel pretty "normal."
Good luck with your upcoming scans. Hugs and prayers to you and all our BC sisters!
Aleta
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Oddboood and Kendara,
Thanks for checking in and letting the rest of us know how you guys are doing. I was diagnosed in mid 2019, so I had AC-T only, no immunotherapy. The advice I received from oncology nurses, integrative oncologist, and TNBC survivors was to walk everyday if possible. They said it will help keep your WBC up. I walked early in the morning and it helped me psychologically as well. You don’t have to exercise hard, but getting some exercise everyday can be helpful
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Had my fourth infusion yesterday, and saw my PA as well. After just three weekly infusions of Carbo-Taxol (and one of Keytruda), my formerly 2cm hard-as-a-rock, easily palpable tumor can no longer be felt - by me or the PA in my MO's office. Yay!
The other god news is that side effects have still been minimal - nausea controlled easily by Compazine, plus a few minor mouth sores that don't really hurt and seem to be controlled with a non-alcoholic mouthwash. I had some fatigue in the first two weeks, but the last two weeks my energy has been great. I'm going off the steroids and the Benadryl since I've had no signs of allergic reaction to the Taxol. We'll see if that induces a dip in energy, but since I only take three dexamethezone once per week on chemo days, I don't anticipate a huge change. Per my chemo nurse, the weekly regimen can be much easier to tolerate - even though you don't get the rest time between infusions, the lower dosage seems to be easier for people to handle. Also, no hair loss yet, and blood work looks really good for all the key WBC markers!
Here's hoping others on this new regimen have a similar experience - at least in the first weeks. I know there's still five months and 20 infusions to go, and I'm prepared for a rough time as treatment progresses - especially after the switch to AC at the 3-month mark. Still, thought this might be a welcome update for others who may be beginning this regimen.
Love to all,
Aleta
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Oddboood,
I am so glad that the new treatment is working. I hope the side effects stay manageable. AC is tough, but I felt like it was very effective. My 6+ cm tumor shrank the most during AC, so hopefully AC will help kill off any lingering cancer cells you may have
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that’s amazing oddboood! Carbo (Taxol, carbo, keytruda) kicked my butt & had to drop 4th carbo. AC was the worst of all but every 3 weeks & only 4x. I got a dose reduction after the first AC. Now I’m on keytruda only and they said no nausea but I threw up in the parking lot afterwards. I think both carbo & AC worked well. Glad to know ofothers having this same treatment! Best of luck ladies. You can do it!
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oh, Aleta, I’m so encouraged by your post. I just started my first treatment last Tuesday and have been totally exhausted all week. Can hardly get out of bed. Dizzy. Weak. We are on the same regimen so I am looking forward to feeling better, hopefully. Please keep me posted.
I was feeling so unwell I started getting almost panic attacks which I have suffered from previously and take Paxil for. It always worked until I started the chemo and now I am trying to control my anxiety. The nurse bumped it up to 30mg from 20 but I’m afraid to take advice on these type of meds from a nurse. I’m just a mess. Not looking forward to next Tuesday.
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My chemo starts Monday, every 3 weeks for 18 weeks. The Fabulous Dr Baker is very enthusiastic about this new combination of drugs and has very high hopes for a good outcome. My son is 2 years out from rectal cancer and is in total remission so I'm assuming the same will be true for me. My youngest daughter is getting married 2 weeks after my first treatment so I'm really hoping I can stave off the worst of the side effects for at least that long.
And it makes me laugh to see the typo in the thread title. My fingers are crossed that I don't wind up calling it KeyTURDa before this is all over with.
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Had my second course last Tuesday. Felt great for the following few days. Today, Saturday, I can't even get out of bed I'm so weak. Has anyone experienced this? thank you
annie
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Aleta, I am so happy for your great response to your treatment! I had my third infusion today. Almost didn’t because my neutrophils were too low (after being too high last week!). Doctor decided to go ahead, but I have to get three filgrastim shots over the next three days to stimulate white blood cell production.
My side effects have included diarrhea, nausea, insomnia, flushing, neuropathy, loss of appetite, general malaise, loss of muscle mass, elevated blood glucose, low neutrophils, and a really foul taste in my mouth that was not relived by anything. That happened the day after the second infusion and lasted three days. Some of my side effects were related to the dexamethasone and some to the chemo drugs.
Despite the side effects, I am glad to be getting treatment. My tumor feels smaller and softer to me. I will have an ultrasound the day after the seventh treatment and that will be the real measure of whether the treatments are working. I feel like I’m getting the latest and best protocol and if I have a chance to beat this cancer, this is it.
My hair hasn’t fallen out yet, although I had it cut into a really short pixie in anticipation of the mess. My husband loves my super short hair, which he had never seen on me because I wore my hair long for 40 years. He’s already lobbying for me to keep it short after treatment ends and it grows back. We’ll cross that bridge when we come to it.
Sending loving thoughts and encouragement to all.
Kendar
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Thanks, Kendara! Sorry you are having a rough go right from the start. But yes, even with the crappy days, it does feel good to know we are kicking cancer's butt!
And welcome AnnieG, DeltaMoon, mammacure! It is so great to have this forum to share experiences. Especially since this treatment is so new for bc patients, I think we really can gather some important collective wisdom here. In that vein, here's an update from me:
So after a ridiculously easy first four weeks, it got real fast. Treatment five hit me hard - like all the pent up side effects suddenly decided to burst forth in a great big blaze of glory: hair falling out in big clumps, fatigue, painful mouth sores, and, as an extra bonus, the evening after the treatment I developed a rash that covered my face and body with itchy bumps, and a fever that spiked at 101.8 with a sore throat and a weird cough. Yowza.
I ended up in my hospital's acute care clinic the day after the fifth treatment - they weren't sure what was going on, but the fever went way down by late afternoon and tests showed no COVID or sign of other infection, so they let me go home. By the end of the following day I was fever free, and the rash had started to fade. The rest of that week was okay - just minor fatigue, nasty mouth sores, and ongoing hair loss (that hit me hardest - knew it was coming, but still - it just made me sad, you know?).
Enter treatment six - yesterday. A few hours after I got home, the rash came back along with a fever of 102.8 and a cough (this AFTER taking ibuprofen and naproxen). Called my MO and he said take Tylenol, some more Demexthesone, and Benadryl in addition to the ibuprofen, and go to the ER if I had trouble breathing. He seems to think the rash and fever are a Carboplatin reaction; it turns out that somewhere around treatments 6 - 8, many folks run into hypersensitivity reactions to this drug. My reaction is apparantly considered "mild;" they only get really excited if you show signs of full anaphylactic shock. Still, MO says he may cut out the Carboplatin completely. We have an appointment before my next infusion and will talk through it then. I'm feeling much better this morning - fever is gone, but the rash has me looking like a ripe tomato.
Reading up on the Carbo toxicity issue, I learned that some doctors will do a skin test on you before treatment 6 -7 so they know ahead of time if you will have an hypersensitivity reaction. Then they can lower the dose or decrease the infusion rate to help mitigate the reaction. Might be worth mentioning to you MO as you enter week 5 -6.
Sending love and light to all, and sincere thanks for this wonderful supportive community.
XOXO,
Aleta
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Hang in there oddboood, Carbo is hard, I ended up skipping my final Carbo, it was just too much.
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Week One Recap: Things did not progress in the order I expected them to. From what I've read and heard, I expected nausea first, then the muscle aches and exhaustion. Thinking I had caught a break with the nausea when there was no sign of it after 4 days. Monday and most of Tuesday were pretty normal days. Faded pretty quickly Tuesday evening and the muscle pain (not aches, actual pain) started. Spent most of my time in bed trying to get comfortable, with short spans when I had to get up and move around. Nothing much helped though so I wound up back in bed. None of the expected exhaustion to speak of, beyond just not being able to sleep. The nausea started Friday night (should have known I wouldn't escape it) and most of Saturday. No actual throwing up thankfully, just feeling like I needed to. Along with the nausea came the joint pain. First my shoulders and hips, then moving down to knees and ankles. Even rolling over in the bed was painful at that point. I had a burst of energy Saturday afternoon and got out to run a couple of errands in my "new" car. And because it's me, and I don't understand the concept of moderation, I wound up back in the bed by mid-afternoon. Woke up long enough to eat, then back to bed. Sunday morning the gas pains started. Hard abdominal gas pains. Dealt with that all day and into the evening. Nothing I tried gave me any relief so I'm open to suggestions.
Because this is my first round, I don't know if subsequent rounds will follow the same pattern but at least I have an idea of what to expect. The not knowing part was the worst. Just waking up and wondering "what next?" was making me crazy. At least now I feel a little more prepared. I will be 1/3 of the way through treatment by my birthday, halfway through by Thanksgiving and 2/3 by the New Year. I can do anything for that long if I break it down into manageable segments.
Of course, all of this may be moot by the next chemo round. My daughter is getting married Saturday and even though I don't feel stressed about it, I'm sure I am to some degree. How that is affecting me, I have no idea. Guess I'll find out in a couple of weeks.
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Hi Delta Moon! Sorry to hear you had such a rough go of it right at the start! One thing that might make your situation a bit different from mine is that you are on a 3-week treatment schedule. Per my nurses, at least in the early weeks, weekly carbo/taxol is easier to tolerate? Perhaps if there are others on the three-week regimen they will also share.
Annie G11 - I felt that same fatigue your describe several days after my week six treatment. Unable to get out of bed, going to the toilet felt like climbing a mountain. It's getting better now, but not until after a rocky week (see below).
I actually had to skip my week 7 infusion because I'm in the hospital and have been for the past five days with a fever of 102+ that would not stay down - until today. It's been really rough - but in the past 24 hours I seem to have made progress, so I'm starting to feel hopeful. Docs have done what seems like millions of tests (CT/PET/X-ray/MRI) and taken gallons of blood, but they are still not sure what is causing the fever. My liver enzymes are also climbing every day, and for that reason I think they are starting to suspect Keytruda, which would be a huge bummer. Time will tell.
I think we'll all struggle in different ways at different points, but it's good to get all this information consolidated here so we can learn from and support one another as well as those who will enter treatment in the weeks and months to come.
Love to all you wonderful folks. Sending beams of love and healing all around.
Aleta
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Aleta-just read this and I am so sorry you are in the hospital (well, you were yesterday). I hope things have improved since you posted and that you're at home now. I hope the doctors figured out what was affecting your liver and that your enzymes went back to normal.
Delta Moon-how was the wedding? I hope all went well and that you felt good enough to enjoy every moment.
Annie-how are you doing? Post an update if you can.
I have my fifth infusion tomorrow. This was the worst week so far for me. My entire digestive tract from my esophagus to my colon hates me right now. My scalp is pretty unhappy too. The Pepcid isn't working for the acid reflux and the Compazine gives me headache and dizziness. I'm scared to take Imodium again because it shuts all GI tract movement down, and then when it wears off I get excruciating abdominal cramps as my intestines try to wake up. And I recognize that these are all considered “mild" side effects compared to the things that can put me in the hospital.
Praying things get better for all of us.
Kendara
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Kendara - Thank you for asking. The wedding was beautiful and went off without a (major) hitch and they're off on a honeymoon for a week, so I can stay in bed as long as I want every day until my second treatment next Monday. My friends rallied to help with everything I asked them to do, and some things I forgot needed doing. It was a wonderful weekend but I'm glad it's over. And for future reference, 2 glasses of champagne is a great laxative! p.s. A teaspoon of baking soda in half a glass of water is a magic potion for acid reflux 90% of the time.
Aleta - so sorry to hear about the fever. It's a toss up to me which is worse, having a fever or being nauseous. So far, I've avoided the fever. Hope you're out of the hospital by the time you read this.
Annie - Yes. Muscle aches and joint pain had me feeling weak as a kitten for several days after my first treatment. Even rolling over in the bed seemed like a monumental task at times. It has mostly gone away though, so hang in there and give it a few days.
I have been writing about this adventure on facebook and it seems to help. It not only helps me sort out my thoughts, but I'm getting feedback and suggestions from friends and strangers who have traveled a similar path before me (on different protocols) so at least I have something to ask my doctors about. High doses of Claritin before and after the chemo has been suggested several times, so that question is on my list for The Fabulous Dr Baker next week. He may say 'no' but he may say 'give it a try' and I'll have one more weapon in my arsenal to fight this battle with. I'm also sort of putting everything out there for the others who will follow us on this treatment path. It's pretty hard finding others who are triple neg on Keytruda, so maybe one of them will see something that might help them. Or maybe they'll offer ideas that will help me! It's exciting, but also daunting, to be "leading the charge" so to speak.
Delta
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And I woke up this morning with my scalp tingling and itching. Ran my fingers through my hair (what's left of it after I had 16" cut off before my first treatment 2 weeks ago) and came away with clumps of hair in my fingers. Totally expected and not too concerned about it. It's a small price to pay for the treatment that will save my life. At least I made it through the wedding and the photos before it all fell out. And on the bright side, I don't have to deal with loooong hair clogging my shower drain!
I'm leaning towards just being bald and skipping the wig. I seriously doubt anyone who sees me bald will comment on it to my face, and I don't have to look at it unless I want to. Maybe scarves or hats if it's cold out, but that will probably be the extent of it.
Are any of y'all experiencing the hair loss yet? How are you dealing with it?
Delta
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Hi Everyone,
Here's a brief update from my end. Tomorrow should be treatment 8 of 24 weekly infusions, but sadly, I'm still in the hospital. My liver enzymes are still going up - now at an increasing rate. To stop this runaway train, they first had to rule out the many other things that can cause liver disfunction. The docs have determined that Keytruda is likely the culprit, so no more immunotherapy for me. I'll remain in hospital on steroids until my liver stabilises, then I'll meet with my MO about the way forward. It's a bit daunting since it now seems both Carbo and Keytruda are off the table. I realise now I was pinning a great deal of my optimism on getting immunotherapy - the increased PCR rates are so impressive, it made me more confident about the whole thing. I think I'll need some time to integrate this new reality into my outlook.
Kendara - sorry to hear about your digestive issues. Constipation is the worst! I don't know if you've heard of a tea called "Smooth Move"? My Onco Nurse says it helps lots of folks in this situation and is available in most drug stores. Hope this week is a bit easier!
Delta - my hair loss started in earnest after treatment 5. It's now so thin that my scalp shows through almost all over. Just have not had a chance to get it shaved off since I've been in hospital. Before I landed here, I was just wearing knit caps/hats (I'm up north and it's already cold). I did order a wig because I was planning to go to my niece's wedding in early November. I'm not sure I'd bother with it if I didn't have a special occasion to attend - I was sad at first, but now I feel surprisingly comfortable just going about in my wool hat.
Love and light to all of you!
Aleta
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Aleta, so sorry to hear you're still hospitalized. I hope the liver issue isn't physically painful or uncomfortable for you. It's bad enough to have to deal with the psychological facet of it without adding in pain on top of that.
I do have a question for you though. What is an MO? I tried to look it up and in the US it's apparently a Master of Obstetrics. It's also for Medical Officer, but I'm not sure that is an American term except maybe in the military?
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Delta Moon, MO is used on this website to mean “My Oncologist”.
Kendara, Oddboood is right about the tea “smooth move”. It does work and it’s pretty gentle on the system. They sell it at Whole Foods and other grocery stores as well.
Oddboood - hang in there. I’m sorry that the immunotherapy has been so difficult. Straight up chemo is pretty darn effective as well. Adriamycin and taxol are very strong chemo, so there is still a good shot at PCR.
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Aleta, I am soooooo sorry you are still in the hospital and that your liver is not behaving itself! It must stink to have to drop the Keytruda and carboplatin from your treatment, but many many TNBC survivors did just fine with AC + T before carbo and Keytruda were around, so don’t lose hope! Praying for wisdom for your doctors to figure out the cause of the liver trouble and stabilize you ASAP.
Delta Moon, MO stands for Medical Oncologist. RO is Radiation Oncologist. BS is Breast Surgeon. These three doctors are the specialists most breast cancer patients will have to see. Also, I am so glad the wedding went well and that your hair hung on through it for the photos! My hair lasted for about three and a half weeks after my first treatment, then started shedding, and now after treatment five it’s about 85% gone. I wish it were all gone! The remaining stragglers are not a positive look! I have been wearing scarves and hats. Haven’t worn my wig yet because my scalp was too sore, and now that the soreness has finally eased (after two weeks) I have folliculitis around the back of my head, so I’m trying to let the scalp breathe (and started using a prescription lotion yesterday).
Thanks for the recommendations for constipation, but my problem is actually the opposite-too many bowel movements and too much gut motility. I will try the baking soda and water for the acid reflux.
Love and prayers to you all.Kendara
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Another day, another adventure. Woke up from a hard sleep in the middle of the night with my bladder hammering on my kidney, trying to get my attention to GO, NOW! I sat up in bed, trying to move the dog off my feet and suddenly felt something moving on the side of my now-completely-bald head. Frantically slapping myself in the face, trying to keep from waking my husband up, untangling my feet from the covers, hoping the dog doesn't think I'm trying to play with her, and praying I don't wet my pants before I can get it all sorted out. And then I realized that what I was feeling was my ear stuck to the side of my head and it was slowly unsticking itself. By this time I'm wide awake, and so is the dog. Fortunately, she had no desire to play and I made it to the bathroom on time. There's also some weird stuff on tv in the middle of the night.
These are the side effects they don't tell you about.
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I was diagnosed with TNBC on August 2, grade 3, stage IIIC. Two tumors in inner left breast (3.6 cm and 3.4 cm) plus one intramammary node that lit up in the PET scan. My oncologist has me on this protocol. (Keytruda every three weeks, 12 weekly taxol/carbo then 4 AC every three weeks)
I have had nine consecutive weekly taxol/carbo treatments and three Keytruda infusions.
The good: my tumors have been impalpable since treatment 3.
I seemed to tolerate the treatment pretty well until…The bad: I ran fever after the last two infusions. The second time I ran fever, it went to 103.3 and to the ER I went. I checked out and was sent home with antibiotics.
I am currently on my second week of a chemo pause because of elevated AST and ALT liver enzymes. I have a liver scan tomorrow (for “probably nothing but need to be sure”) and have just finished a 5 day course of prednisone. I go for lab work Tues and am hopeful that the enzymes will be better so I can resume treatment.
I really want what we all want - pCR!0 -
Hi all— new to this thread, and to breast cancer. Diagnosed triple neg stage 3b in late Oct, and now on neoadjuvant 3 mos 4xKeytruda + weekly Taxol+ Carbo, then 3 mos A/C + Keytruda every 3 weeks - then surgery, radiation, and presumably Keytruda (recognizing from posts above that things don’t always go as planned). A challenge for me is that I have also got Rheumatoid Arthritis, and the clinical trials for this protocol did not include people with autoimmune disorders, so the MO is moving forward recognizing that there could be issues tolerating the Keytruda (and potential for stimulating RA flares). Have had first two infusions and so far so good (fatigue some days, constipation, night sweats). Using ice packs during taxol and carbo infusions to reduce neuropathy risk, have not yet lost hair but will probably anticipatorily shave in a week or so (think I’d be stressed out by falling out).
Would welcome general opportunities to connect/support (appreciate the recommendation for Smooth Move tea and will be purchasing that soon!) — also from hearing from anyone who has also got a diagnosis of RA or other autoimmune disorder.
Will add that today I’m also trying to manage some anxiety about the implications of the new COVID variant— I was already pretty anxious just because of my RA and meds I took, but having cancer with a COVID variant that might evade the vaccine and all the implications of that seems truly like too much. Realize best to stay in the present, but just wanted to share that this is on my mind right now.
I also wanted to share that a person very dear to me had triple negative bc 10 years ago (Stage 1a, grade 3 IDC) and did surgery and A/C and has been completely disease free since that time! So there is hope!
Thanks all, and best wishes.
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For GI issues: investigate fasting or fasting Mimicking, with chemo the middle day. I did Carboplatin/Taxotere (no Keytruda then) and fasting was instrumental in managing GI issues (mine was constipation). Theres much less in your tummy to distress you and when you start to be hungry again it's time to re-feed after the fast.
Re feed with lots of nutrients is important afterwards.
The fast tells your immune system to get rid of weak cells and 'shut things down' somewhat due to calorie restriction.... and the re-feed tells your system to ramp up immunological factors again. Secondary advantage of fasting is healthy cells are more shut down during chemo (protects them) and after, immune system is boosted. In animals chemo effects were improved by FM.
Dr Valter Longo USC is the doctor who developed fasting mimicking.
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Hello....I'm new to this forum. Diagnosed TNBC 9/2021. Just finished session 9 of Carbo-Taxol & Keytruda regimen. I had an allergic reaction to the Taxol preservative first time out which was scary but handled well by the nursing staff. Medication was changed to one with a different preservative/carrier. This whole thing is obviously no skip in the park, but I hope to maybe help minimize the fear and anxiety factor for some by sharing my own experience. I must say I've been surprised that I would consider my side affects to be minimal from what I expected given all the horror stories many of us hear (and my mother died at 52, 40 years ago and had chemo, and it was much worse than the disease itself back then.....Things have changed dramatically). Yes, I managed some constipation but no big deal. Yes, I'm tired a lot of the time, so I take a lot of naps. Yes, I lost my hair....I took control of it....Started past shoulder...Cut it to a bob...Then to short...Then to a pixie...Then shaved it to level 2 on shaver vs. having it fall out all over. It's about hats & wig pieces...I had some fun with it, making lemonade out of lemons best as possible. It'll grow back....It's the least of our problems....I've taken the approach of throwing everything possible at the wall to fix this best I can and feel very fortunate that I have the time and means to do what I do, but of course I have no proof that what I'm doing has made a difference. Doesn't matter, I just do it, and it makes me feel like I have some level of control of my own destiny too. Here's what I do....Practice safety in all things...Covid avoidance, germ avoidance, food safety - no raw fish or meat, no community salad bars, no old leftovers, etc. etc. Accupuncture once a week. Walk a mile or two every other day. Get outside (away from people) as much as possible. Very healthy diet (no red meat, tons of fruits & veggies, organic as possible, fish & chicken, minimal sugar, no junk, multiple small meals), absolutely no alcohol (can't afford added liver stress) drink plenty of water and pure berry juice (diluted), consult a nutritionist. Consider yoga, massage, meditation. Do what makes you happy, and find ways to avoid anxiety. Keep in touch with supportive people daily. The mind is a powerful thing and controls the body is ways I'm sure we don't fully understand. Figure out how to reduce anxiety, sadness, worry, depression, and get nto a positive mode that's working for you to resolve this bump (pun intended) in the road......Be well all....
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