Starting Chemo March 2021
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HopeHeal, yes he gave me Pantoprazole and Metonia and they definitely made a difference
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I'm just getting my head around all of the abbreviations, but I'm pretty sure about the AC. Were you taking Zofran or ? for the nausea? If I could get a handle on how long the nausea phase might last, it would sure help, especially if the Zofran is contributing to the constipation. I have ordered some "Dried Plums" as I've been told that's the new name for prunes.
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heliosue, I wasn't nauseous the first 4 days when I was on steroids. It hit me hard on day 5. On day 6 my MO changed my medication. I was so scared of nausea that I didn't stop till day 10. But then I was ok after that0 -
Now I'm wondering if I could have held off on the Zofran for another day if the steroids were doing their job early on. Yeah, the threat of nausea really makes it hard to experiment.
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Has anyone who had the Fulphila shot had an overproduction of WBC? I have had labs drawn the last 3 days due to my heart rate issues, and yesterday my MO was confused by my numbers and today they are even higher.
My WBC count is up to 34 k/ul (lab says normal high is 10), my Neutrophils are over 26,000 ( normal high is 7,500) and my RBC are falling below the normal low mark. Anyone else have something like this show up?
Yesterday my MO had to consult with a hematologist because she didn't know what was happening and today when she called me she hadn't even looked at my latest test results until I was on the phone, and then just said she "hoped it was due to the shot". Such a confidence booster!
Yesterday she gave me the choice of going on antibiotics in case it was due to an infection or coming in today for a chest CT to rule out a pulmonary embolism and run more labs. I chose to investigate and did the CT. Thankfully that showed everything looked normal but my blood is doing some kind of dance and I'd like to know if it's a happy one
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Hey everyone, have update, do not mean to scare anyone reading this but I wanted to post what information I had found and discussed with my oncologist as the best choice for me and after talking to my oncologist about my concerns of the lawsuits of the 1-2% chance permanent hair loss from TC /Taxotere which was a risk I was not willing to take! And my oncologist told me yes I was correct about the information . I have been in the medical field for 30 years so did my research to discuss other options than what is the norm, and my oncologist switched to CMF that has milder side effects , no Neulasta needed, no neuropathy since no taxane tyoe drugs, but have to do 6 instead of 4 which was fine with me for eliminating those effects! Oncologist says will have same outcome as if did TC , Have round 2 on April 1 and round one went well for me. To all you ladies : Stay strong 💪 and kick cancer out of our lives !
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Hi everyone, I'm hoping to draw on your knowledge and experience having to do with probiotics.
I know from my own experience that that probiotics are very helpful in getting digestive processes back in order following a course of antibiotics, and I am curious as to why I don't see much information on the web about using probiotics following chemo. There is definitely information to be had when Googling, but there doesn't seem to be much ongoing discussion. Any thoughts or actual experiences, and if so, what do you use or find the most effective. Thanks.
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Hello all,
Day 3 and I have been nauseated the past two days, I did go to my acupuncturist yesterday and it really helped. She said to look for "Sea Bands" at drug store, they use for cruises. It can help also. I have that heart racing thing going on every now and then. Got the buzz cut today, came home and cried, put on beanie. It will be ok.
Having this forum is a comfort, we are not alone, we have each other. We share our experiences, share meditation links and tips. Unfortunately we share this awful disease. I hope everyone has a good day, gets some relief.
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Hi ladies. Happy Saturday! Hugs to all dealing with SEs, urgent care and hospital visits. This totally sucks.
I am TC #1 day 12 and feeling pretty darn good considering my recent brush with perforated diverticulitis and hospital stay. I'm still on the 2 antibiotics through Monday.
Probiotics: I have been taking them daily for 10 years after a battle with C. Diff. My GI doc says they can't hurt. Now, while on the 2 antibiotics 4x/day, I have a schedule where I work them in at least 2 hours before and after any antibiotic. I take one capsule twice/day. Originally I was using Florastor, but those are really expensive, and while they may be packed with Saccharomyces boulardii the one I use has that, though not as much, and loads of other probiotics, and is way more affordable. I have been able to keep C. Diff away since, so I think they work. It's called Nexabiotic, originally called Benebiotics, made by DrFormula.
I saw my MO yesterday. We agreed I had an underlying GI infection that went out of control when my ANC dropped to zero. So we decided I will get a second infusion of TC but reduced by 20%. In addition I had blood drawn yesterday and will again on Tuesday pre infusion. Plus I will get Neulasta Onpro patch. I have the doctor's cell phone number and am to call if I feel anything is going south.
I am going to try not to take the anti nausea meds this time and see how it goes. Apparently constipation was not an issue for me even though I thought it was. I just feel like we are told to take meds for every symptom and I think that confused the heck out of me and my body.
I'm really enjoying the shaved head thing. Too bad I look like a dork. Today I'm wearing a regular ball cap, not a scarf. I feel almost human this weekend. It's like childbirth...you forget all the discomfort and pain once it's gone, and then, BOOM, you have another!
Chrystal...do you still have fuzz? You are about 6 days ahead of me and GreenOutdoors. Any body hair pulls out easily. I won't pull on my head hair, but just wondering when the fuzz will be completely gone.
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Hey, yep, I still have fuzz. Less and less each day.
Day 3 of TC cycle 2, I’m doing ok. Very sleepy. Kinda achy, probably also from my second Covid vaccine.
Ate a piece of cake for lunch
nap time. Good luck all.0 -
Hello Ladies in Healing, hope your weekends are off to a pleasant start.
NatureYogi I am sending comforting energies for your challenging day. I hope it gets easier soon and you can rest comfortably.
Heliosue good question about probiotics, I think science is beginning to understand that caring for our gut biomes is one of the best ways we can support our entire system. I try to take the pills as often as I can remember but I also know that fermented foods are way cheaper and are very helpful. I was going to make some live kraut to eat a few times a day but then wondered if now might not be the best time to experiment with foods that could potentially mold. so to be safe I will just get some from the grocery store.
Heidi I sure hope your next round is smooth sailing. I hear ya on cutting down on some of the meds. They keep throwing more at me for every symptom I bring up, but then the new meds have potential side effects too. My mom raised me on alt medicine, vitamins, herbs, and mindset healing. This is a very different world to explore!
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I signed up for a course at Chris Beat Cancer and have a free "buddy" pass so someone else can take the course too. If you are interested message me and I can give you the code.
here's a peek into his philosophy which includes nutrition, exercise, and mindset.
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kipepeo and LoveNow, thanks for the probiotic information. I've been doing some more online research and it does appear that the jury is out on the probiotics, especially following some fairly recent research. I guess I'll hold off on them for awhile, anyway.
I do think on my next infusion that I will try to get by without taking the Zofran (at least until I feel slightly nauseated and proceed to panic). This time I took the Dexamethazone for three days (before, during, and the day following my treatment, which was a Tuesday. I forgot to take the anti-nauseaus on Thursday morning and have had no signs of nausea. If the Dex covered me through Wednesday and I was okay on Thursday, then maybe I really didn't need the Zofran for that one day. (The Dex gave me coverage for a longer time?) Of course on the next round my logic will probably blow up and give me big time trouble.
I know we are all at different stages of our infusions with lots of different side effects to deal with and I wish each of you only the best of results in the coming days. Short side effects and long recoveries.
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LoveNow, I found Chris' class too; he's great. Like you, I was raised off the meds mindset so all these meds are scaring me. I hope I my body handles them well since it had less body-burden from them growing up.
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LoveNow have you heard about the IP-6 supplement? Someone just told me about it.
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Just woke up from a 3 hour nap, I feel better! LoveNow, I discovered Chris Beat Cancer before I started chemo, I was eating raw vegan and I believe it helped me get prepared, I have to eat cooked foods now for digestion, but plan on going back to the diet once chemo is over. He has a lot of inspirational videos with survivors. I try and juice regularly.
Thanks to all the information on probiotics, I need to incorporate these back into my regimen.
Stay strong!
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Yes, 4 rounds of TC so halfway thru. Hit the wall yesterday afternoon and had a long nap. Got up and tried to make myself eat something, barely could. Felt a little better in evening. This morning same, ok but now its 1230 and I can feel the fatigue coming on. I have to say Im also digging the shaved head thing. Being 'inside' you dont see yourself or think about it most of the time. Probably more of a reaction from those who see me!
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Aviva,
Hang in there, halfway there! Yesterday I was upset about hair, but I'm with you, it is easier to deal with being gone. We went down to beach for a couple hours, threw on beanie and forgot about it. Took a nice nap there, and just listened to the waves.
The nausea isn't too bad today, I'm going to try and hold off on taking any anti nausea meds and breathe through it.
Hope everyone is having a nice Sunday!
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I am so very sorry to hear that you have had to go through all of that. My heart, thoughts and prayers go out to you.
I came on this site tonight for the first time, because I am scared to death of tomorrow (In supposed to start my taxol carbo chemo tomorrow). I was first diagnosed in Dec 2020, told on 12/10 I had Breast cancer, told on 12/17 I had Triple negative breast cancer. I'm 50 y.o. with 3 children (ages: 28, 24, 21), my youngest still lives at home with me and goes to college. I am very familiar with cancer and chemotherapy as a close outsider; my grandmother, grandfather and mother all had cancers at different times, (different types, no breast cancer), and all had chemotherapies and all passed away despite their treatments. I lost all of them before I was 19 years old. I watched chemo suck the life out of each one of them. I watched them deteriorate right before my eyes. I had always swore to myself my whole life that if I ever got cancer, I would never have chemo bc of that. And then, it happened to me, and now I look in the mirror at my sunken eyes, and my bald head and instead of seeing me, I see my mom and my grandma in their pain. Of course all the doctors said chemo is so different now, so much better, its not the chemo of 30 years ago. Yea, yea, yea....all that may be true but it's still toxic as heck and scary beyond belief. In Jan. I decided to follow my doctors recommendations and start the 4 rounds of AC chemo every 2 weeks. It was awful for me from day 1. It only got worse with each treatment. The nausea was the worst and nothing helped, none of the medications I was prescribed, not ginger, not teas, nothing. It took me 8 days to recover from the first treatment, 9 from the 2nd and 3rd and 11 days from the 4th. I told my dr. that I needed to take a week off before the Taxol Carbo started (which would be 3 weeks from my last AC chemo). In those 3 weeks time I had my diagnostic mammogram and ultrasound and my tumor now shows 0.6, it started at 0.9. The dr had said she expected/hoped with the AC it would reduce in size by 70%, and if not then I would be doing Carbo along with the Taxol, once a week, for 12 weeks, then lumpectomy (bc my genetic testing was negative for the brca gene), then radiation. So, all that said, I am already physically and even more mentally exhausted, and I don't want to do anymore chemo. I've thought about so many things in these past 3 weeks, and googled everything I could, but I've not yet found any post from someone who just decided not to do the rest of their chemo. I know my viewpoint about chemo was already negatively skewed coming into this, from watching my family members all go through it and still end up passing away, but despite that, I gave it a try, and it was a horrible 2 months for me. I don't feel like I'm giving up on myself, I feel like the negative effects of the chemo outweigh the benefits, despite what my dr says. I am considering a double mastectomy instead, so that I could skip chemo, hopefully. Heck at this point, I will consider anything other than chemo. I don't have any family support outside of my 3 kids, and just in these last two months with the AC chemo, I have had to depend very heavily on my youngest daughter at home to help me. I don't want to be a burden to them when they should be enjoying their young lives. I don't want to end up with long term, or permanent conditions, like neuropathy, or worse, and have to depend on them long term, just to extend my life for a few years. Of course I don't want to die at all, but if truly given the choice, I would rather live a shorter life in which I could live to the fullest with all my strength and capabilities in tact, than to live a longer life where I'm sickly, unhealthy, and in pain, suffering, and having to depend on my kids. I don't know if anyone out there has decided not to do chemo after starting it, or has any advice, but I would love to hear your input. Thank you for reading!
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cthea2010 my heart goes out to you. It sounds like you have had so much loss in your life to cancer and the effects of chemo and have been through a lot in your treatment up until now. I am happy you found us and hope we can be a support in your life and your journey to health.
I can't give suggestions but I can share that after only one TC treatment I am going to be speaking with my oncologist this week to determine if I will be going forward with the other 3 infusions she's recommended. I have had more SEs than I anticipated and am weighing the toll this treatment can take on my life vs the benefit it could give me from preventing a recurrence. I have a 6 year old and I can see that chemo is going to take me away from her in many ways and that is a big part of my decision. Also, I already have neuropathy and heart irregularities due to Lyme disease and am concerned that chemo could make these worse.
For myself I am going to break the statistical numbers down and form a "pro" and "con" list and give myself the permission to choose from my heart and not my fear. I hope you can find a way through your choices in a way that feels best for you too, also knowing it is ok to change our minds whenever that feels right.
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Hi Cthea2010, I am so sorry for your experience and that you have to be here. Also for your family history and experience, may they RIP, and your current situation and lack of support. From my perspective you are lucky you at least have kids who can help you.
I haven't started chemo yet as I meet with my onco this Wed (wishing team gave me a sooner appointment). However, I have little family experience up close with chemo, just one aunt who seemed to tolerate it well. I have a sensitive stomach so scared of any nausea. Since you had prolonged nausea, how could you possibly take in fluids, wouldn't it warrant a hospital stay with an IV? Have you thought about getting a 2nd opinion from another MO who might have a more tolerable protocol? Perhaps your body will get used to it and adjust as it develops its homeostasis and toleration to the medicine. As you also mentioned, some of your reaction may be psychologically due to the fear you have and the trauma of your past. Reaching out to us is a great first step in allaying your fears and misery, you will find a lot of support here! I would also suggest watching some comedy and your favorite movies to get your mind off of the treatment. Mental state has been shown to influence physiology and help reduce stress, and for me that has been effective when ill.
I did not know a double MX could prevent chemo, thought systemic treatment is necessary anyway because of tiny cells that could spread.
I know what it's like to feel ill and just want a way out. I do know stories though of patients who suffered greatly with chemo but beat the disease back because they were relentless (one was Lance Armstrong, the other an elderly man). OTOH, coincidentally I recently watched a video of a woman who could no longer tolerate it, linked below. It is a holistically based video and the speaker engaged in some of the mind-body influence I mentioned above. She also mentions a fasting protocol used before and after chemo that might help with symptoms. Some of the members on this site are having success with that and you can read more about it here:
https://community.breastcancer.org/forum/163/topic...
Keeping you in my prayers for a speedy recovery, easy tolerance and full remission!
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LoveNow wishing you the right decision and healing.
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Hi HopeHeal,
Thank you for your kind words, they are greatly appreciated! To answer your questions: I wasn't able to drink much water at all. I still can't, which has been so hard for me, because I ate very healthy before chemo and I drank nothing but water. I have been an "only water" drinker for years and I love water so much. So not being able to tolerate anymore than a few sips of it everyday has been very hard for me. I was going in to the dr offc every week, and getting hydration through my port cath that's in my chest bc yes, I was dehydrated. But after the 8-11 days of nausea wore off, I was able to drink a little water and also fresh fruit mango smoothies made with just mangoes and ice, and sometimes I could eat fresh watermelon so I stayed somewhat hydrated on my own. I miss drinking water the way I used to and on the few times I've tried to drink more than a few sips, I've immediately regretted it, as it made my stomach feel so queezy for hours afterwards. My appetite has been severely affected as well. Before chemo I ate very healthy and now the only things I can tolerate eating are: plain chicken breasts with no seasoning, plain baked potatoes with no seasoning, mango smoothies and watermelon. For breakfast I eat a chicken breast, for lunch, a mango smoothie and for dinner a chicken breast and a baked potato, every single day. Ive tried the small meals throughout the day, and it didn't work for me. I've also had severe heartburn, and I belch and have gas constantly throughout the day and night. My dr says that my body is just highly sensitive to drugs and chemicals (I think that's just her way of saying I'm a difficult patient to treat). I say my body just knows what is good for it and what isn't and it knows that this chemo is not what it wants inside of it. I have thought about getting a second opinion and I am going to check into that this week, as well as a second opinion from a surgeon bc I had a bad experience with my port placement surgery and it took over a month to feel ok with it in my body and now I'm scared to go back to that same surgeon. I don't think my body will find its toleration to the medicine bc chemo is cumulative; the SE get more intense with every treatment, and that's exactly what happened with the AC chemo. The last one was definitely the worst, and longer to recover from than the ones before. I'm not sure if getting an MX will definitely mean no more chemo, but from what I've read, most ppl who have one, don't have chemo or radiation afterwards. I did read one article where chemo was recommended afterwards and my happy thoughts about it quickly turned to sadness just thinking that might be a possibility. Maybe just a lumpectomy and then radiation, I don't know. I really need to get the most up to date stats on the local, regional and distance reoccurrence and survival rates with the choices that im considering vs. the treatment plan my dr. wants me to follow. During the days before the next chemo's, where I wasn't feeling nauseated, like the last 3-6 days before the next treatments, I would go outside, take walks in the park, ride in the car just looking at the world, and watched plenty of great movies including comedies and all of those things made me feel alive and well again for those few days, but during the 8-11 days after chemo, I felt so horrible that watching tv, talking to anyone, even moving around my house just felt so awful, I wanted to do nothing but sleep. Many of those days I just wanted to go to sleep and never wake up again. I never knew nausea could make me feel like that, but chemo nausea, for me, isn't like any other nausea I've ever had. The very thought of ever having to feel that way again is more than my mind can bare. What I hate the most is that my daughter sees me feeling that way, and it makes me feel weak as a person, like I can't handle this. My kids have never seen me that way. Mentally I am beating myself up bc I feel like: why can't I just go in that dr offc and do the next 12 weeks of chemo like so many other ppl have done? Why can't I do this for my kids? It makes me feel like a failure that I cant tolerate the SE so that I will have a better chance of surviving and being here for them. But I did try, for two months, I took the most toxic chemo drug that there is, and physically it was brutal and mentally it almost broke me. I don't want to actually break mentally or get to the point where my quality of life is so poor I can't enjoy it anymore, and that fear is the reason I don't want to do anymore chemo. This extra week I took off from starting the TC, I have felt so great and on a few days I had so much fun, and joy that I almost forgot I had cancer. Chemo sucks that away from me. You're right, some of the reason I feel like that is likely from what I experienced in my past, but I believe most of it is really the chemo sucking the life out of me...
I don't know how to add my diagnosis like I see under everyone else's posts, but my diagnosis is: left tnbc, grade 3, stage 1, ki67 (i think that's what it's called) 95%,tumor is local, no detected spread to lymph nodes by mamm or US. Size is 0.9mm at diagnosis, now is 0.6 mm.
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Hi LoveNow,
Thank you for your kind words, they are greatly appreciated! I am sorry that you are going through this too. Thank you for sharing your struggles with the chemo. I hate that you have to go through that, especially with a young child, but knowing that I'm not alone in this struggle to decide to continue with chemo or not, means so much! I want the same information that you are seeking as far as stats. The pros and cons list is a good idea! I like what you said about giving yourself permission to make your choice from your heart and not from fear. I'm definitely going to try to do that and also like you said to give myself the space to change my mind if I want to. I see under your post, that you already had a double mastectomy, am i reading that right? How was the surgery and recovery for that? I have thought about opting for that surgery instead of a lumpectomy but only bc my thought process was, well if they take both breasts and the lymph nodes then I wouldn't have to have chemo bc they will have removed all of the cancer, but apparently that isn't anyways the case?!? Thank you for sharing and sending positive thoughts and prayers for your healing
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Thank you! My positive thoughts and prayers are with you for your healing too!
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Thank you LoveNow and HealHope!
My positive thoughts and prayers are with you for your healing too!
HopeHeal: thank you for the videos, I will watch then in the morning!
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Hi cthea2010,
I am sorry you have gone through all of that. I haven't gone through TC yet but from some threads on this site I have heard many people saying it is easier on the body than AC. AC is cruel but my hope is maybe it is the same on the cancer cells as well.
For the water, have you tried other drinks? I have tried some and have found coconut water to be the most tolerable for me. I am a big water drinker but on AC water doesn't taste good
I still try to have it but having alternatives at times help me a lot.Good luck with your treatment and let us know how it goes please.
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CThea2010 Aram had a great idea about the coconut water. Thank you Aram!
Do you think you are really sensitive to the chemicals as the doctor stated, or that it is the AC itself? When you go to the dentist for example, are you fine with just a local anesthetic or must you be anesthetized?
BTW you can add your diagnosis by going to your Profile, then under the Diagnosis tab. You can write in details by going to Profiles, Settings, the scrolling down to signature.
Hope you feel better soon.
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Good afternoon everyone. I am typically more of a reader than a poster but wanted to let you all know how grateful I am you share your experiences. (Even though I wish each of you were not having to deal with this disease.) I have not dealt with any major illnesses with myself and this threw me for a loop. I am also the caregiver for my 89 year old mother who lives with me.
I was diagnosed with breast cancer in Dec. Had a lumpectomy in January. I am having 4 rounds of chemo followed by 6 weeks of radiation. I had my first treatment last Thursday. My main issues have been pain in the port surgery area and yesterday dealing with diarrhea. Today is better.
Am I wrong in thinking chemo is the worst and once I get through this radiation will not be as bad?
1 down 3 to go.
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CThea, I wish I could hug you right now and take away all your pain and sadness. This is certainly a rough road. I am Triple Negative as well, on the AC chemo right now, second treatment. I was a healthy eater, drank water, yoga almost every day, hiking, and now can't walk too far past my driveway. I have hopes this will change. I know what you mean about water tasting blah, I got an idea when you were talking about watermelon, maybe put some in the water or strawberries. i usually drink lemon water, but it doesn't go down well either. I hope I can get double mastectomy soon.
HopeHeal, thank you for the videos.
My acupuncturist told me about "Sea Bands" used for motion sickness. I had my husband pick up a box at Walgreens, $13.99. It says on the box it helps with chemotherapy/nausea, two bracelets that use acupressure on the Nei Kuan point on each wrist. I'm going to give it a try. She placed a patch on my wrist last time and it really did help. Didn't have to take as many meds. I'll let you know how it goes after next treatment, April 9.
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https://www.youtube.com/watch?v=8kz3DVbE86c&t=161s