Forum Discussion
chemo or no chemo
Hi everyone,
I am new to this list. I am 60 and was diagnosed with breast cancer (ER+, PR-, HER2-, Grade 3, Stage 2) and had a mastectomy a couple of months ago. My oncologist recommends chemotherapy followed by hormone therapy. However, I have been reluctant to undergo chemotherapy due to concerns about the side effects, especially the long-term ones. I am curious about how others made their decisions regarding chemotherapy.
I also had a genomic test, which reported a 36% risk of recurrence. Chemotherapy might reduce this risk by around 10%, and hormone therapy could further reduce it by another 10-15%. I am still uncertain, but I need to make a decision soon.
My oncologist recommended a combination of two drugs: Docetaxel and Cyclophosphamide. I wonder if anyone has experience with this combination. I have seen some posts about chemotherapy, but they discussed single drugs administered sequentially, not together. I am concerned that the combined treatment might be more taxing on the body.
Thank you for reading my post and for your responses in advance.
23 Replies
- @Emeraldgreen thank you so much for updating us and for sharing the brave steps you are taking. I am so in awe of just how many people this disease affects, it is remarkable really that we are all singularly taking this journey, but it connects us in ways we never thought imaginable.
I have sent you a message Emerald. x - Don't worry about not feeling communicative Emerald. <3 I wasn't during chemo either. After my fourth cycle I was just really mentally vague which is not like me at all.Walking into a room and forgetting why, that kind of thing.I think the emotional effects kind of catch up to you as well. I remember feeling both tired and fed up like everything was overwhelming so I turned it inward and shut down a bit. Again- not like me but I think it's the toll chemo takes on the brain & body adding up.
If you're doing docetaxel+ cyclophosphoramide you've maybe got only one cycle to go after this? You're nearly there. Keep on trucking. It gets better, especially once you're a few months post active treatment. - Wishing you good progress. I do hope that you are mingling a bit more. But taking any necessary precautions. Eg if aquantainces have been unwell that they do tell you before meeting you, and cancel. Hand washing and Mask wearing when needed. My Oncologist kept me informed on how my White Cell Counts were. Luckily, mine were never dangerously low. During Chemo I didn't catch anything, I was lucky and careful.
Many thanks to Abbydog and Selkie for sharing your experiences, and ShazLou, I’m sorry to hear that you are going through a similar situation as I am.
I apologize for being quiet over the last few weeks. With your encouragement and my family's support, I started chemotherapy in June and had my third round a few days ago. This isn't an excuse for not replying to your kind messages, but once the chemo began, I isolated myself and minimized my connections to the outside world. I became introspective, spending a lot of time figuring out what to eat and what to avoid. Despite this, I continued working, taking one week off every three weeks during treatment to ensure I was okay. Thanks gods, the side effects have been manageable.
Selkie,
you were right; the steroids and the injection 24 hours after chemo caused more issues than the chemo itself. I took half of the prescribed steroid dose but still experienced sleep problems and back pain. Thankfully, I didn’t have any nausea, even with the reduced dose (shhh....). Weighing less than 50kg, I felt the prescribed dose was too much for me compared to someone who weighs 70kg. My sense was that half the dose would suffice. (Please don’t copy me if you don’t know well your own body. ) The injection after chemo caused some joint pains, and I wondered if a reduced dose might alleviate the pain without compromising effectiveness. Of course, this is something to research and discuss with a doctor.
One side effect I experienced was a drop in blood pressure (I generally have low blood pressure). I stayed active and jogged in the mornings until I fell on my face! ShazLou, if you exercise, take it easy for the first few days, as the chemo and the post-chemo injection affect joints and muscles. I should have listened to my body and not pushed myself. After the fall, I now limit my jogging to the third week only.
I shaved my hair during the second week of chemo, and it has been thinning gradually but most of them are still hanging there… As many people pointed out, the side effects seem cumulative, and after the third round, I felt more tired than before. Although the side effects are manageable, I feel I've had enough, today.
Thanks again to everyone, and good luck to you, ShazLou.
Warm regards. Emerald
- @Emeraldgreen my story is almost exactly the same as yours, except I am 13 years younger :) Very similar diagnosis, 5 weeks post-surgery now and just about to start 20 weeks of chemo. I am very daunted by the range of side effects, and my very brave 20-year-old son recently sat in on my appointment with the oncologist. When he heard the side effects, he was very overwhelmed and asked "why would you put yourself through that?!". I said to him that for me, it wasn't really about choosing to 'want' the chemo, but more about not being able to move forward and think that I didn't throw everything that I could at this disease. I still have a lot more life to live and if this helps me do that, then I feel better in myself knowing I gave it my all. My beautiful sister-in-law who has also recently been through this journey shared a simple statement with me - it is only temporary. This has resonated so much with me, and it has helping me find peace with this. Every person has to choose their own path and I hope you find a decision that sits comfortably for you. I wish you all the best moving forward. x
- Hi @Emeraldgreen . I had the chemo combination you had. Like you, I was also quite frightened of chemo having watched a family member go through it. What made me decide to follow through with it is the fact I didn't want to have any regrets- I needed to know I went with recommendations should things go pear shaped down the track.In terms of how I found docetaxel + cyclophosphoramide chemo. They give you massive amounts of steroids to take in the first couple of days which mitigate most of the risk of vomiting. This worked for me but I did find they made me quite constipated (with the opposite effect once they wore off). They also made me a bit "high" and it was a bit hard to sleep. I was up at 2-3am through most of the four months of chemo tbh.
They also give you an injection the day after treatment day which stimulates your immune system to hopefully prevent infection. I found that one gave me quite a lot of pain for a day or two but I was ok after that time. I also wore an n95 mask to all hospital appointments including during radiotherapy afterwards- I didn't care what people thought, I wasn't taking any risks.One thing about TC chemo- it does hate hair and nails but they do eventually grow back. My nails were curly like a corrogated iron roof but they've finally grown in straight now I'm 12+ months post treatment. My hair started growing back in around 4 weeks post the final cycle- at first downy bum fluff that was curly but now it's gone back to straight. Eyebrows took a litle longer and they are admittedly thinner than they were.
In terms of long term side effects I have a tiny numb/tingly patch on the outer side of my big toe (peripheral neuropathy) but it's not really anything to write home about.
Just to give you hope. I was a swimmer before I got sick and now I'm back to swimming 2km/5 days a week. I have full use of my shoulder- I was very conscientious with doing all the exercises the physio gave me. It hurt at the time but now I see the pay off. At first going back to swimming was hard- my endurance was shot but you take it one week at a time and it does get better.
Good luck. These aren't easy decisions and the treatments affect everyone differently. - Dear Emeraldgreen,
I'm sorry for your diagnosis. It comes as a shock I'm sure.
I was diagnosed 2020 Stage 2 Grade 3 with 3 lymph gland positive for cancer.
I was happy to throw everything at my cancer. I had Mastectomy with axillary clearance.
Chemo (ie Epirubicin with Cyclophosphamide, then Paclitaxol 12 doses), and Radiotherapy 5 weeks.
Now 5-10 yrs AI's
I did not have any severe side effects, my side effects were all very manageable. I had no nausea, and did not need anti nausea drugs. I could have worked, but chose not to. It was the start of Covid at diagnosis.
I used my Income Protection Insurance, which was within my Superannuation.
The only lasting side effect that I am aware of, is mild peripheral neuropathy in my feet.
There is no way of knowing how Chemo will affect you, in advance.
I also did not lose my hair, but I did use the Cold Cap during Chemo. I thinned just a little.
All the best with whatever you choose.
Ask any questions. Beautiful and Lovely Ladies,
My heartfelt thanks for sharing your stories, insights, and caring good wishes. It’s comforting to know that you have successfully completed the chemo process and have managed or are managing the side effects well.
I still have to make up my mind, but when I do, I will be thinking of you. Wishing you all good health and a BC-free future. With Warm regards.
- Dear Cath, many thanks for responding to my post and sharing your story despite struggling with your current health issues. I am terribly sorry to hear that the treatment had hicups. But I am sure that the continuing treatment will work well. I wish you great strength and best of luck.
