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.
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