What happened to my life?

Question

Hi to all...new member here. In August, I was newly diagnosed with scleroderma and was admitted to hospital for a range of tests to ascertain the level of internal involvement. A chest CT scan showed that I had cancer in my left breast, and then the real party started. Biopsies, mammograms. bone scans and so on and on. (You girls all know the drill, I'm sure). The end result was Stage 3 Invasive Ductal Carcinoma, which is Her receptive. I survived four cycles of The Red Devil (Doxorubicin) and Cyclophosphamide, also known as AC therapy. I clocked up a total of 56 days in hospital during this extended noghtmare, with febrile neutropenis, anaemia, rashes, severe fevers which were never explained. Tests were done for malaria, TB and heaven knows what else. My oncologist would not proceed with the next round of 12 weeks of Paclitaxol and Herceptin, until she was sure there was not hidden source of further trouble. So, there was a gap of seven weeks, with no chemo...really worried about this. However the show has now restarted, with my first treatment completed last week and my next one of just the Taxol due tomorrow. Have had joint and bone pain, but won't whisper a word about it, for fear of the brakes being reapplied or the dose reduced. After this chemo, bilateral radical mastectomies are going to happen, with no choice of radiotherapy after surgery due to my scleroderma. Another nine months of Herceptin will follow. To add to this drama, I have to inject Clexane twice a day asd I have previously been on Warfarin for fifteen years due to repeated pulmanary embolisms and DVT's. What the hell happened to my life. Five months ago, my biggest worry was what to cook for dinner.....

primek · Answer

Our life certainly gets taken over by cancer treatment. I found ACT-H hard but without your complications. I had joint pain on taxol, increasingly getting worse to about cycle 9 then it improved. I had an allergic reaction to taxol so had higher steroid doses pre treatment and this gave me all sorts of issues. The good thing is neutropenia is much less of a problem than AC, my friend though due to febrile neutropenia on AC had neulasta every 4 treatment on taxol just to be sure.

I just took regular panadol on those bad days and even tramadol on cycle 7 to 9. Then didn't need much after that. We are all different how we respond but any slight aches you had before seems to get intensified.

Here's to a smoother run for you with this treatment. Kath x

brenda5 · Answer

Welcome Ally, thank goodness for scleroderma! The xray picked up the breast cancer because of it. Watch the CT scan dye. I found I am allergic to it and broke out in blisters on my hands and feet. Don't worry about the break in chemo. My dad has bone cancer and had over a month off during Christmas and stayed with me. During that break he got back all the weight he had lost and his blood tests showed his cancer markers actually went down not up so the break was a good thing.
At least on the Clexane you don't need as many blood tests and you can eat leafy green vegs and drink alcohol which you can't on Warfarin. I am afraid joint and bone pain are a part of chemo and we just have to keep up exercising and take painkillers when its bad. Your blood tests before each chemo will tell the oncologist if there is any damage to internal organs and if chemo should be stopped.
I have finished the surgery and chemo and I did not need radiology because I had the mastectomy and there was nothing left to radiate. Hopefully in a year or so you will be like me with the biggest worry being what to cook for dinner. Hang in there Ally, we're all here for you. <3

dibee · Answer

Hi Ally, As you can see it's quite normal to have bone pain on Taxol so don't think you have to suffer with no relief.
I'm taking Naproxen and Panadol together and previously took Mobic on the AC. All the best with your doc chats. Di xx

melclarity · Answer

Allyjay Oh My Goodness!!! I think we can all relate to varying degrees of your recount!!! Amazing when you think about it that youre still standing and still sane??!!!! but you are! Hat off to you!! Ive had BC twice in 5yrs and 2015 I had IDC Stage 2 Grade 3 that landed me into the fun parlour too!!! Lol Chemo aaaah 4 FEC also the red devil, ended up in hospital for 3 infusions it made me that ill. 8 Taxol and was very different but the pain throughout 4.5 months of chemo was relentless. So absolutely find something that works! Im allergic to narcotics so OMG could only do nurofen with panadol osteo. It took the edge off even 1yr post chemo I still suffer pain but its more Arimidex but still have days where I pop a couple of Panadol Osteo. Only post treatment was I able to start making any headway with my rehabilitation. Finally Im working with an Exercise Physiologist and honestly its gobsmacking how involved it is, and how all the muscles work, I LOVE IT!. She said there was NO WAY I could have exercised through treatment, and unless you are an athlete only recommends very light if it makes you feel good. This is where she said you get to rebuild as your body is healing and through chemo I guess I didnt realise how much it just needed to heal. Hope youre doing Ok!!! Big hugs!!!

Dibee!!! so glad youre feeling a little bit better!!! It so helps knowing you are not alone on this horrid journey, and so much of it is normal, well to all of us anyway. ! Melinda xo

karenhappyquilt · Answer

So sorry for you health problems. They are very tough.

I also did not expect or plan to have cancer. Ironically two close friends had had cancer, I though statistically I therefore wouldn't. I nearly didn't have my regular mammogram because I was very tired and thought I was fine!

I find this a fascinating topic, how we all act as if we are immortal, it's so hard for me at least to keep in my mind that of course I will die one day. And that life can change in an instant. And every living thing is the same.

I think had to come come to grips with having had cancer after chemo and radiation finished, while it's gong on, I was so focused on getting through them, it was all I could think about.

Very best wishes for your treatment. Karen

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