Hi,
I am a BRCA1 mutation carrier and have been diagnosed with breast cancer at the begining of this year. Started my chemo on the cocktail of Epirubicin+Carboplatinum every three weeks + FU5 continuosly on the bottle-pump attached to me.
Is anybody else out ther on the same mixture and close to me in age (I am 36)?
It would really help me to find out if the side effects get any worse,as I had two chemos by now and apart from feelling like a sleep deprived zomby with a dose of flu for the first 3-4 days, followed by few mouth ulcers and horrible feeling in the mouth it has not been too bad so far. But as a few nurses mentioned to me that the side effects are cumulative I am really worried.
Also would like to find out how quickly the hair falls out once they start? Do they all just go in a couple of days and you end up completely bald, or is it tufty and patchy? I have cut mine really short and during first chemo had cold cup, but did not have it on the second chemo (the thought of having it again made me unhappy-it is not pleasant-I am not that vain!). Noe it is the end of second week after my second chemo and my hair are still with me-although the scalp starts to hurt.
Will be really grateful for any shared experiences.
Cheers!
Irina.
Hi Irina,
Don’t hear of many on that chemo combo these days. I had it way back in 1996/7 - but i was a bit older than you are as well - 50! I had the cold cap treatment and although my hair thinned on it I didnt lose it. The main cumulative effect on me was the plantar palmar one - where the hands and feet get very sore and skin splits. Because of this they kept reducing the dose. I seem to remember getting lot of mouth ulcers on it as well. I would say it is important not to play down any symptoms you have and to tell your oncologist in plenty of time. Some of the side effects are hard to get control of once they get a grip. I do hope you manage to stay the course without too many side effects Irina, good luck.
Dawnhc
Hi Irina,
I have liver mets and last year went through weekly Epi and 5FU but not carboplatinum. My hair fell out quite quickly in clumps so I had my head shaved but it started growing back about 4 weeks before I finished my treatment that finished just before Xmas and I have a pixie style now. I didn’t do too bad for side effects but they did reduce the 5FU about halfway and had to stop the chemo for 2 weeks as I developed a horrible lip following a coldsore it was all blistered and scabby it healed very quickly though. I wasn’t too tired but did have sore feet if I stood up too long. I agree with Dawn about keeping on at the oncs as I it took about a month to sort my lip out and it wsn’t pleasant for people who had to look at me I’m sure. I’m 41
Good luck
Allie
Hi, Allie and Dawnhc,
I have just joined the forum for the first time with my last message and was very excited to receive your comments-thank you very much.
Today my scalp does not hurt so much, but the hair started to fall out a lot more now-a ‘‘malting cat’’ style. I am not brave enough to have it all shaved, but the messy business of it falling out does get annoying -so I brush it out morning and evening (does not help mush-as they continue falling throughout the day).
Do you remember when your side-effects were at their worst? Is it really cumulative and gets worse with every consecutive chemo or do I have a hope that it might not get any worse that it has already been after just two chemos? (apart from the hair, of course)?
Did you also have the FU5 continuously?
Thank you so much,
Irina.
Hi again Irina,
your questions have driven me back to hunt through my notes as my treatment on this set of chemo was 10 years ago now. I was on the 5FU continuously with a pump. From reading my notes it seems that I had major problem with the chemo by the 2nd course with ulcers and diarrhoea and they reduced the 5FU by 25%. After that one I had a break for a month for surgery to take place. The one following surgery I was fine with but found I was losing weight. Then the 4th one was started but i reacted again with the plantar palmar symptoms and gastric problems so the pump was stopped for a couple of weeks. I was ok on the 5th one but rough again on the 6th and thank goodness the last. The main problems were the hand/foot syndrome, and the gastric one - I had a lot of ulcers in my mouth and through my gastric tract. Today I think they would give you proton inhibitor such as omeprazole so if you have any gastric probs ask for them. I had problems swallowing food - it seemed to get stuck! 10 years ago they put you on fairly high doses of VitB6 (?) piridoxine to help with the hand problems but I am not sure they do that so much now - but it is worth asking if you do experience that. Hope this is of some help.
Dawnhc
Hi, Dawnhc
Thank you for your message. It did make me feel hopeful -as I am to have my thrid course chemo on Wednesday, the 5th and the side effects so far were bearable -mild itching of hand palms and 1-2 small mouth ulcers every now and again. So I thought if your bad side-effects already kicked in by the second course, maybe I will get lucky. But then read some other threads on this site, and girls writing that their third Epi was a lot worse than the first two, so I guess I just need to wait and see as everybody reacts reacts differently.
The prosecc of my air falling out at the enourmous rate depresses me a lot more than I expected and my scalp had been hurting pretty badly for the last 3 days. I am still too chicken to shave it all off at once… Does the scalp hurts after chemo even when all the hair fallen out?
I will take your advice and complain to my oncologist about the increased side effects after my second chemo. The belching caused by indigestion was so bad-it was hurting my throat, even when I just drunk two sips of water! Getting a bit depressed now because have only one more day of ‘‘feeling good’’ left before the third dose of chemo will knock me out for a week… My husband attempts to cheer me up by saying that after this I will be ‘‘half-way’’.
Going to see the BC nurse tomorrow to discuss my fears about mastectomy and reconstruction using LD flap. I am mortified and will ask her millions of questions tomorrow.
Thanks again for your help.
Best Regards
Irina.