Starting chemo November 2020

Sharon - the same thing - winded after stairs and walks. 4th TC infusion was even a bit worse. High resting heart rate.

Hi RainyDay and "starting chemo November 2020" gang-

Hoping by now you are even closer to "done" with your TC treatments?

Thanks for your post about hormone suppression. I have one more TC treatment on Thursday (of 4). I am pre-menopausal now, even at 49, but my oncs are suggesting I should have "a shot" to shut down my ovaries so I can start with AI (stops estrogen production) not Taxotere (coats cells).

Is that what you are deciding between?

Originally, I was told by another oncologist that I'd start with 5 years of T, then switch to 5 years of AI.Is that what you are deciding between?

Thoughts? Anyone?

-Renbird

Hi all. Anyone else struggling with self-massaging tissue expanders?

I have been doing it ten minutes every night since my BMX in October and I do NOT look forward to it. Dread is a strong word, but it's something like dread.

I have to listen/watch something while I do it to distract myself. I don't like any of the sensations -- the feeling of the expanders under the skin, the numbness of my breasts, the feeling of the incisions under my fingers, the discomfort in certain places under the skin.

After the BMX the plastic surgeon told me to do it 10 minutes at a time, three times a day.

I admit I've never once done it three times a day and was really proud of myself for doing 10 minutes a night. I saw the plastic surgeon PA recently and she said I should be doing it 15 minutes three times a day. I'm now doing it 15 minutes a night and am having a hard time increasing the frequency.

Just wanted to see how other people are handling this.

Thanks,
Sharon

Sharon - i dont have the reconstruction so can't offer any help with this. I was told to gently massage the scar but i dont find it pleasant either and just dont do it really (not sure if its anywhere near the same, sorry).

Just had my bloods, and there are great so off to hopefully last session tomorrow. with reduced dose to help reduce the risk of permanent numbness. From 1 Mar (midway through radiotherapy) i will need to start Tamoxifen. I am also supposed to take the ovarian suppressant (whatever that is). Was not offered any other options such as AI.

Hope all are doing well. x

Sharon - I saw your post asking about TC taxotere and cytoxan on another thread. I wanted to tell you my experience. I had 4 cycles of TC and my last one was January 8. It has been 2 weeks. This last one is the hardest for fatigue and out of breath walking and my heart rate is high. It is finally coming down. I had to get cleared for my exchange surgery (replacing the expander with the permanent implant) and the regular doctor was gone so I saw a NP and she didn't understand chemo. She was all upset and sent me to a cardiologist. HE said I'm fine but he wants to do a stress test to be sure so next Thursday I have one of those .

I think it will take a few more weeks but today (two weeks exactly) I am feeling pretty much myself just some lingering fatigue and trying to get my walking back up where I don't pant after a few minutes. I do about .5-.8 mile at a time right now and about 2-3 miles total a day.

Let me know your experience. It is nice to compare.

Also some people that have TC isn't cytoxan but another drug so there infusion might be different.

YAY! DanniB! That is awesome! Ring that bell!

DanniB - I am in the same situation. I had a left mastectomy and lymph nodes were clear. So I had 4 infusions of TC taxotere cytoxan.

I don't think we will know if it worked unless we never get cancer again. If it spreads in the next 20 years, then the chemo didn't work - I guess.

Hi Ladies, I haven't been here in a while so thought I would check in.

YAY Danni!! So glad you're done with chemo!! Bet you're relieved! I did ask my Oncologist and another oncologist the question you asked - how would we know if chemo is working for us. Both of them gave me the same answer that there is currently no protocol or guidelines that they can follow to know. We can only hope and pray the chemo is doing what it's suppose to do. However, you and I are doing radiation next so I'm sure we'll be getting a scan done. I know I'll be getting a CT scan and I'm going to request they scan both breasts if they're not doing a full body scan.

I got my lab work done today but may not know the results till I meet with my oncologist just before my last infusion on Monday morning. I felt like I did the best I could eating good and drinking bone broth in preparation for the blood work, so we'll see.

I hope everyone's keeping well.

Take care,

Jo

Danni, all of those side effects sound terrible. I hope they pass for you quickly. I have experienced the restless legs part and it is uncomfortable and annoying and makes it really hard to sleep.

I have gotten similarly unsatisfying answers to the question, "How do I know chemo worked?"

My medical oncologist told me in the old days they used to scan patients post-treatment but it was ultimately more harmful than helpful. Intellectually I guess I understand that, but I sure wouldn't turn down the opportunity for a yearly body scan.

Tomorrow is my fourth and final TC. And my last session with that @#$% scalp cooling system.

I'm not sorry I did the cold cap (although still in negotiations with Cigna for partial reimbursement) but I did learn the hard way to take the Tylenol and Ativan a full 30 minutes before putting that frozen torture device on my poor partially bald head.

I'm bracing myself for more fatigue and trying to set my expectations low for my mood and energy level for the week. Also eating yummy things today since I anticipate that my mouth/taste buds will be sensitive again this week.

Thanks for being here everyone.

Sharon! Ring the bell! Celebrate the end of chemo and cold cap!

I didn't get to ring the bell but I like what it represents. I didn't feel the relief after my last chemo until a week or two after just knowing it is done and the side effects were pretty much gone.

I am not sorry I cold capped but I was disappointed since I lost a lot of hair but one of my friends saw me without my ball cap and was amazed at how much hair I had left. So I guess that is good. I am about 18 days out of my last chemo - no regrowth yet that I can see. I still have my eyebrows and lashes. I heard they could still go. I just want to start growing hair. My taste is normal again. I am not as lethargic but I do get out of breath walking and going up stairs

I am so glad you are done!

YAY JoW888!!! How great a feeling! Ring that bell!

Congratulations Jo!! x

Congratulations Sharon! I know I didn't feel relieved until after 10 days or so when I started feeling "normal" again and knew I wouldn't have to do this again. I refuse to do chemo again. Hope you feel better soon.

It has been 3 weeks tomorrow since my last TC and I am feeling better but still get out of breath if I walk longer or faster. I have surgery scheduled for Monday expander switched to permanent implant and port taken out. There was some talk of postponing because my blood work was a little low and I had to get cardiologist clearance due to high heart rate 102. The cardiologist checked me out and said I was fine but he did send me for a stress test this morning. I think I did okay but will get his final report tomorrow. The oncologist told my surgeon that the blood work was fine and that it would get better every day. I had it Tuesday and surgery is Monday. So I think I am still on for Monday. We will see tomorrow.

We are almost done!

Sharon - have you been getting fills during chemo? Are you done being filled? when is your PS doing the exchange surgery? I might be rushing it. I have been filled 700ccs since middle of November.

those that used dignicap. I had my last TC infusion January 8 and the last few days my hair is really falling out like it did 19 days after my first infusion. So I had lost about 50% but now it is like 70%. I thought it would start growing back.

Marie - sorry you lost so much hair with cooling cap. I asked the nurses about when to expect the re-growth and they said about 6 to 8 weeks. Hopefully for you it will be sooner because of the cooling cap.

Sharon - my brows and lashes have started to shed days after last chemo (number 4) but mine was an increased dose on accelerated plan accept for the last session due to neuropathy. So depending on the dose, i think it's different for everyone and they are likely to remain on weekly doses from what i've heard. I've got to say that a bald scalp didnt bother me but as the brows started to thin, i have felt so ugly. It makes me sad that i care about it - i dont want to, it's not important because none of us chose this. Work in progress..... Apart from that, i took pain relief for 4 days this time and now am managing with a hot water bottle. It's day 8 and the pain started to ease. I still feel very fatigued but it helps me sleep through the night.

We got the best news yesterday - my partner doesn't need more surgery. Half thyroid removal was the right choice and he now will be monitored every 6 months but doesn't need any replacement meds.