i had a hysterectomy 3 weeks ago and doctor is pressuring me to do chemo (platin and taxol) 6 times every 3 weeks and then herceptin. i just want to forget the whole thing and do international travel. pressure, pressure, pressure. i really do NOT want to be sick for a year (????) but i think i just want to ignore it and travel until i can't and die naturally. this is apparently a very agressive cancer. i live by myself, have no immediate family and really my life is international birdwatching.
i would like to hear people's opinions of the chemo. very afraid of neuropathy (still have some residual neuropathy in feet from back surgery 12/23). just do not like to be sick. I was also recently diagnosed with SIBO (small intestinal bacterial overload and am on antibiotics which i do not think are working yet (it is early days)) so belching and bloating (which i am assuming is from the SIBO and not post-surgical????)
any comments, suggestions would be VERY welcome.
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birdergirl1
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I had similar diagnosis (serous, stage IV, C3, and BRCA2) in 2018. They gave me 6 months to live with chemo, and I'm still here almost 7 years later. Pretty much having chemo every 2 years with some remission in between. What they call "low dose" carboplatin with paclitaxel was easier to tolerate than the big dose every 3 weeks. Infusions were short and easy but once a week. I would get a second opinion. The new first treatment is immunotherapy with carboplatin. And there are other new things. I am in support groups with plenty of stage IV ladies who are tolerating treatments well and living many years, but that 3-week business is as bad for everyone I've met as it was for me, and does a lot of damage.
I had same chemo and my medical team did a great job preparing me. I missed two days of work but otherwise I worked the entire time. Had chemo on Thursday worked Friday and if I didn’t feel great I had the weekend to lay around. Never really had any problems
Everyone’s journey is different. I am analytical, so I looked for as much research as I could find when I was diagnosed. My suggestion is that you ask to see the “Portec-3(rev.)” or whatever the oncologists refer to now for the most current treatment for your cancer and projections for survivability before you make your travel reservations. Also research all of the chemo drugs and their benefits and potential side effects. I found the exercise and mindfulness etc. classes offered by my Cancer Center to be life savers as were their support groups.
i tried very hard to get data!!! got half answers that really did not give me what i wanted to know. eg asked for median pfs for my stage etc cancer and got ‘ i have patients that are still alive after 5 yrs w your diagnosis—but how many surgeries and more chemo??? nada. thanks will look into portec 3(???) first i have heard of it. it seems like there is no data on peopke w my dx that did not have chemo but very hard to believe
i guess i am serous (highly aggressive) 4b so portec not applicable (stage iii and under) but thanks. annoying-seems like there should b data out there
I’m so sorry the Portec wasn’t helpful. Living one’s life to the fullest is what we all need to do once diagnosed, If seeing the world is your next step, have a plan in place for after your last trip so trying to figure that out doesn’t weigh you down during your travels. Also, join an online support group before you take off and stay in touch with them during your travels. Wishing you peace.
I had endo serous and as it was said, a spit away from stage 4. After surgery, I had chemo every 3 weeks, for 3 rounds, the was switched to external radiation, then Brady, then back to 3 more rounds of chemo. After the second round, the neuropathy raised its ugly head and the level of chemos were reduced to a lessor amount. Back then, no other treatments were available, and it did the trick, thank God.
I just put my head down and did it. I live by myself and don’t have any immediate family to rely on either. I drove myself to all treatments, appointments, etc, plus all the house chores, grocery shopping, etc. still fell on me. I did the best I could with what I could. Seems like I lived on Campbell’s soup and crackers, and popsicles. Don’t know why popsicles helped with the pain, they just did. Eventually I reached out to a support helpline when I really needed to talk with someone who understood what I was going through. That’s who I defined as my family/support. Obviously, the various women who talked with me didn’t drive me anywhere or run errands, but more importantly I had someone who just listened to me and that helped me so much. I didn’t need a problem solved, just a safe place to vent, which always helped me feel better because I didn’t hold all those feelings in. In my opinion, they were better than family or friends because I didn’t have to worry about the other person. I hope you have found them or others who help you in that way.
The only other survival tip I have that really helped me personally, was distraction. I would spiral down mentally if I thought about treatment all the time, so I found YouTube shows that were funny, or movies, or books, etc. “laughter is the best medicine” they say. And finding a place to interact with nature, which is always great for you
Don’t know if any of this helped, but know we are here here to listen.
Thank you very much for your comments. I can't believe you did all that alone . I thought I was extremely independent but you certainly put a new twist on it.
So far, no neuropathy but wearing compression stockings except at night and doing the cold foot cooler thing (I am more concerned about my feet since I am an outdoorsy person) and one hand mitt that i switch between hands during chemo. I know the effects are cumulative and may not rear their ugly head until later down the road. Still trying to plan international travel but perhaps am deluding myself. I guess when you have an aggressive stage 4B you're lucky to have the option to do chemo (even though before the diagnosis i never thought I would do chemo -- i guess when you're faced with less than a year you take what you're offered).
good luck on getting the neuropathy under control!!
LOL. When I look back at it, it’s hard to believe myself! But, sometimes you just do what you’ve gotta do. 😜 Like I said, I just did, one step at a time sometimes. I guess my determination came from thinking about my mom who went through WWII and the depression, and my grandmother who sometimes traveled by covered wagon, and my great grandmother who was treated for leg issues by using kerosene of all things. Then there’s my aunt who suffered so much because no treatment for the bad side effects of her chemo had been developed yet. We women come with extra grit I to tap into I think. And, of course, I had a best friend, Cisco, who developed cancer at the same time I did, and taught me to just keep on living through the good and the bad of life, His positive attitude was always there for other “family” and me and could tell when I felt like a scared little girl and needed a hug. And he always hopeful of a game of fetch and something out of the cabinet where treats always magically emerged .
So breathe! Take care of your whole self - physically, mentally, and spiritually. I’d say, why not keep being hopeful of those trips. And Don’t forget to reach out to this “family” of smart, caring sisters to receive and to give.
Not sure if your oncologist has recommended taking Vitamin B6 to help prevent neuropathy. Mine recommended 100mg/day. Look for this form of B6: Pyridoxal-5’-phosphate (PLP, P-5-P), it has fewer side effects. The other form can actually cause neuropathy if the dose is too high ( pyridoxine). Here is a link to one study which found the P-5-P form of B6 to be beneficial: bmjoncology.bmj.com/content...
I found a 30mg capsule and plan on taking it 3x/day but the oncologist said 100mg/1x is ok so I may revert to that when I use up my bottle.
He also recommended L-glutamine powder, 10 mg/day. This is a link to Memorial Sloan Kettering Cancer site where neuropathy treatment is one of the benefits provided by consumption of this supplement: mskcc.org/cancer-care/integ...
Hope this helps! Best of luck in your path forward
thanks. actually i WAS taking a rather massive b100 supplement which i discontinued because i had heard that it was bad for neuropathy. was probably the pyridoxine however. will look at the other stuff. thanks much
Hi Birdergirl1. I'm sorry you are facing some challenging decisions. I did not have an aggressive type and was not advanced stage. So I will let others address those specific issues related to stage and chemo. However, I want to say don't give up just yet. In another group someone just did a check in with women with advanced stage and many have had good outcomes where it is being treated more like a chronic disease. Not saying it was easy but their treatments worked. I know it's a lot and you have to decide what is truly best for you. I would advise at the least getting a second opinion and talking with someone you trust about options and not deciding just out of fear. I hope you find other serous patients to talk to and get feedback from. If your doctor is really trying to convince you, is it because he has seen the treatment be effective for others in your situation? It's great you're reaching out here to hear from others. Where are you located? When I was first diagnosed I remember the organization Cancer Support Community had a program where a counselor could help you work through options and formulate questions for your doctor. Don't know if that could be helpful.
Now, on the digestive topic, I have some experience with that. I didn't have digestive issues before surgery. But from the moment I woke up, I felt bloated and uncomfortable. At first I thought it was just surgical bloat. My surgery put me in menopause too. Here's what I know. Estrogen acts on the microbiome and I suddenly lost estrogen. Surgery requires antibiotics which disrupt the microbiome and kill off good bacteria. Anesthesia slows down or stops digestion during surgery. Our organs get shifted around. Nerves get cut and can disrupt digestion. All this can alter gut motility which lets bacteria sit and grow. This can create a perfect storm for bacteria to grow. As I said, out of surgery I was bloated. I had overactive bladder issues from surgery. Then about 2 months out, I started getting nausea and headaches. The bloating was worse and was not going away so it was not swelling from surgery. I started getting gas and cramps then diarrhea and occasionally constipated for a day. It was awful when it hit full force and had me worried about recurrence. I also got full a lot more quickly and it seemed some foods might upset my digestion but I wasn't sure and so I started being afraid to eat various things. I went to a gastroenterologist. She just wanted to do an endoscopy I couldn't afford. She did a stool test. Tested for inflammatory markers and h pylori, but all came back basically normal. Oddly she didn't test for bacteria. She told me to take peppermint but that can be bad if you have any acid reflux. Oncologist did a CT to clear me for cancer. I was NED. But scan showed digestive issues. I tried to get the gastro to look at the CT but she never returned my messages or calls.
Then I came across some info from functional medicine. I watched a gut health course, or the first part of it that was free and discussed all kinds of gut issues and treatments. Then I found another functional doctor on YouTube who makes really good educational videos. Both of these doctors live in my area and one is also a conventional doctor. I think the other works with a regular gastroenterologist where they combine traditional and functional medicine. Anyway, they both discussed herbal remedies for gut dysbiosis. One of them also discussed the use of antibiotics for SIBO. They use herbs and antibiotics in her practice as I recall. There was a study that showed herbs can be as effective or better than antibiotics for things like SIBO and IBS. I never specifically got tested for SIBO. But the protocols overlap for SIBO and IBS and Candida. I took berberine and oregano oil and allicidin and it helped immensely. Also the probiotic yeast sacchromyces boulardii helps crowd out the bad bacteria in your gut. I used the brand Florastor gas and bloat. I'm sure you were told eliminating certain foods from your diet can help too and is especially important when first trying to heal your gut.
The doctor with the YouTube videos has ones on dysbiosis and SIBO and IBS among many other topics. You might want to watch them. It took some time but the herbs definitely helped me. With SIBO, you also have to make sure gut motility is functioning well. Ginger is what is known as a prokinetic. It stimulates digestion and gets things moving. You can drink ginger tea. Walking is also useful to improve motility. If you can, walk after eating. It took me about 2 months to feel 80 percent better and then I kept fine tuning after that. The YouTube doctor is Rajsree Nambudripad if you want to look up her videos. She also sells supplements. I don't know her, I am not affiliated. I bought my herbs locally from a pharmacy I trust. I didn't buy from her. I thought her prices were a but higher. But she has quality products. The other doctor is Mary Pardee. If you look up her website and look at her courses, you can watch the gut health course for free. Or at least the first few lessons. It was a lot of info as I recall. Dr. Nambudripad's videos may be easier to digest. I know in the big scheme of cancer, SIBO may be the least of your worries. But I know my gut issues made me very uncomfortable and sucked all of my energy. I also developed nutritional deficiencies from it. Once the herbs started to act on the bad bacteria that was overgrown, I started to feel so much better.
So I don't know if any of that helps. I hope you get some good answers on the cancer treatment questions. I know it's all very scary right now. I was also alone and had similar feelings come up. I had a concerning scan at one point that made things look a lot worse. But that turned out to be something else more benign. But when I first had that scan and the doctor seemed worried, I went to some dark places with all that fear. So I am very sorry you are going through it. Treatment may be hard but you might get through it and get to travel again. It will take time and effort but could truly be worth it. Sending you healing thoughts and wishing you the best possible decision and best possible outcome that is right for you. I hope others will.help you here as well. Take care.
So weird. I first only saw your post and no replies. Then after I hit send, I saw other responses and realized this was 2 months old. I hope you are doing ok. Sorry for the possibly now irrelevant reply.
well thank you for your very informative answer anyway!! the sibo antibiotic ($2500 because rx insurance only wanted to prescribe something common) seemed to have work. my belching AFTER was, i believe, something called supragastric belching (my stomach was not even involved - totally esophageal) that i was doing because i had (unconsciously) heartburn and that was my body's way of dealing with it. now doing pepcid a/c twice a day and mylanta as needed and it isn't needed as much. gut is actually doing ok. I think i got the SIBO because of back surgery which necessitates antibiotics whenever i do dentist or get incisions. the antibiotic the back doc gave me were something rather major (augmentin - HUGE).
had second infusion and doing great (albeit with two foot coolers and 1 suzzimitt that i switch off between hands so i have some functionality). heading off to japan the day after third surgery, which is probably silly but.....
Glad to hear the antibiotics worked. Japan day after surgery? That's amazing. Good for you. I am glad to hear you are still traveling and living a full life. Wish I could. My surgery depleted my finances. Still paying that off. But Japan is on my list so maybe some day.
I’m also a stage IV person (tho not serous) and did surgery and then 6 rounds of carbo + taxol. I wanted to share that I credit acupuncture with saving me from neuropathy. I did it at my cancer center a day or two become an infusion and then afterwards as well. There are protocols for us and it really made a difference for my mental and physical health. Good luck to you!
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