Starting chemo November 2020
Comments
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Sharon - the same thing - winded after stairs and walks. 4th TC infusion was even a bit worse. High resting heart rate.
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Marie, Sharon - thank you both, he is recovering well from the surgery, but we don't have much information about what happened during it as the dr had an emergency case surgery and didn't manage to see him yesterday. We should find out what happened and how it went later today.
Marie - glad to hear that side effects haven't been too bad this time. Hope the ability to eat and drink will return soon enough and the tiredness will also ease. Totally makes sense for the surgeons to work out the use of general anaesthetic once, and looks like your breast surgeon is golden and will to work around, fingers crossed all goes as planned.
Sharon - sorry, i can't help with either reconstruction nor ovaries/tubes operations, maybe worth asking in the earlier groups for advice?
In my clinic in London (oncology specialist hospital only), the breast clinic also stopped elective surgeries
The national health care have even stopped some cancer treatments, really sad. My last chemo has been moved to next Friday (blood tests permitting) because the WBC were too low so i couldn't have it today. Also, the numbness i have in the fingers is not recovering well this time, so my last dose will be reduced. Sort of explains the severity of the last recovery. Hopefully, the extra week will do wonders. Radiotherapy also move a week, planning now done and markers tattooed.
Danni x
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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
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Renbird I haven’t discussed treatment after chemo finishes yet. I’m 49 too but my bloods are showing I’m post menopausal so I’d imagine it will be an AI rather than tamoxifen.
I had AC chemo with 5 years of tamoxifen 15 years ago. I had 2 years of zoladex injections when my ovaries kicked in after chemo. The ovaries kicked in a 2nd time after zoladex but at that stage I was only 36 so decided that I was too young to have the ovaries removed so just stayed on the tamoxifen. I had a 2nd opinion from another oncologist who felt that osteoporosis was a bigger concern than cancer recurrence for someone in their 30s.
Despite the recurrence this year I’m still happy with my decision not to have the ovaries removed. I fear osteoporosis and find calcium supplements are as hard as iron to take.
As far as I know you have to be in permanent menopause before they can give you an AI rather than tamoxifen.0 -
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,
Sharon0 -
Also: Ren - will be thinking of you in your last TC treatment tomorrow!
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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
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Sharon my PS never told me to massage it . I do sometimes because it seems to make it feel better. It doesn't bother me for some reason. I know it is temporary. I don't like how hard it has become. I haven't had a hard time with expanders until the last fill where I am now at 700 ccs. They think because it is so full. I am hoping to have the expander taking out February 1 and replaced with an implant if I pass all my surgical clearance tests. I have to go for a stress test next Thursday (no symptoms - not sure why) and a covid test Wednesday. Blood work Tuesday. They seem to be checking me more this surgery than the mastectomy and expander and lymph node biopsy surgery which was 4-5 hours. This one should be 90 minutes. I don't understand it.
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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.
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Last chemo done, just got home after 7 hours and resting
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YAY! DanniB! That is awesome! Ring that bell!
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Here is a stupid question of the day which i keep forgetting to ask the dr - how do they know chemo worked for those who had the operation to remove the cancer?
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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.
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Got it - best efforts basis
i thought since all the side effects are there its some sort of indication but just wasn't sure if there is a more sophisticated method lol0 -
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
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Thank you for this information Jo, it all makes sense. I will also ask about the scans after the radiation. I asked the radiotherapist about how do i get comfortable that there is no damage to the lungs and heart as i will be having VMAT central bone radiation. SHe said they will manage that if i get symptoms of damage so let's see.
New thing for me from this treatment is dizziness and low oxygen which started about an after after pre-meds, dizziness lasted all evening and was joined by the restless legs later at home. My pulse today is between 51 and 61, nearly fainted in the bathroom, so will monitor that. Has anyone experienced this? I still have to take steroid and antihistamines today, so decided to split them in 3 goes: morning and afternoon - 4 steroid tablets each turn then in the evening take the antihistamines as all these meds seem to be culprits for low pulse.
Danni x
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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.
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Oh Sharon - the restless legs are a mare! Sorry you have experienced these too, hope you will avoid them this last time. Just one more go for you lovely, with the cooling and fatigue, only onwards and upwards from then on.
Hope this one is easy on you and we can speak soon on here
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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!
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Hi Ladies! Hope you all are doing well.
I am DONE with chemo! YAY!!! Yesterday was my last TC infusion. I am so relieved. Now onward to recovery and building strength as the days go.
I didn't sleep good last night and was slightly dizzy. I'm blaming it on the steroids. Hoping it will wear off today. My next treatment is radiation and I will meet with the radiation doc on Thursday.
Ladies, I am THANKFUL for the support of this November 2020 chemo group. You all have been awesome! I will check in when I can.
Take care and hugs,
Jo
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YAY JoW888!!! How great a feeling! Ring that bell!
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congratulations JoW888! I can't wait to join you 😊 Six more Taxol treatments for me. Any hair coming back yet? Praying for a complete healing and no evidence of cancer!
Juli
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Congratulations Jo!! x
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Hi everybody. Like Jo, I had my last TC on Monday. Grand finale was a Lupron shot. I knew that was in the plan but I didn't know it was going to happen on Monday.
Today I am just feeling blah and icky and ugly. Haven't left the house since I got back from the hospital. GI pretty much at a standstill. Stomach feels bad if I eat or if I don't eat. Mouth discomfort. The blues. I know it will pass but I want it to be over now. Doing paperwork for refinancing mortgage is not helping my mood!
Hope everyone is hanging in there.
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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.
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Congratulations Sharon - you have made it to the end! All the horrible feelings and pains will start to ease with every day
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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.
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Marie914, I am so sorry to hear that about your hair! That is devastating. I did Paxman and have saved about 75% of my hair but I will not take that for granted. How are your eyebrows and lashes?
I will be thinking of you on Monday when you get your implant. Everyone says it's so much more comfortable than the tissue expander.
p.s. Marie914, You asked me about tissue expander fills during chemo. I have not had any any because my tentative plan is to the DIEP flap reconstruction and my plastic surgeon does not want me to have extra skin. I was previously a D cup but I think I will be an A cup.
Juli, I hope your next six treatments are a blur for you.
DanniB, how are you holding up?
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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.
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That is great news Danni about your partner not needing more surgery.
Sharon - I thought about DIEP but I am pretty obese so they don't like to do it. Now that I had chemo I am just glad to do the minimum. I only had one breast and tomorrow when they replace the expander with the implant I am not even having them touch the other breast. Just want to be done. But later in the year since I met my out of pocket, I might have her do something to the other breast - lift but with minimum reduction to make it somewhat match. I won't know for a few weeks how much different they will be. They put 700ccs in me and will try a 700 cc implant silicone. With me being large, two small boobs won't look good so I will just pad my mastectomy/implant side with something to match my other side for awhile.
Has been 3 weeks 2 days since my last chemo TC and I am feeling really good now. I haven't lost my lashes or eyebrows but I know that might be coming in the next week or two. My hair is still shedding pretty heavy this week. First infusion it was heavy loss after 3 weeks but 2nd and 3rd infusions not bad at all but this 4th one I lost a lot again. Oh well it will grow back - I hope.
Surgery tomorrow and then nothing for a few months. I am supposed to start taking Femara in a few weeks. I wonder what those side effect will be. I hope not bad. Everyone is different.
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