Forum Discussion

HIT's avatar
HIT
Member
10 years ago

HERCEPTON QUESTIONS

Hello everyone,  

Havent been on here for a long time.  Questions for anyone that has had hercepton.  I finished mine on 12/3/15.  I still am dry - skin hair mouth everything.  I have to drink lots and lots of water (and I am not diabetic - been tested twice).  My fingers look like I've been in the bath too long.  Eyes are sore (think they dry, but they don't tear as in chemo) 

 The last two doses of herc I came out in a rash. (Eyelids, cheeks, neck arms chest ) It was sooo itchy. To docs and they tested me for dermatomyositis - oh yay another auto immune muscle wasting disease that is "GUESS WOT" related to cancer (ie in 25% of cases you have or will get cancer).  Then the second visit he finally asked me my history, and after realising all this happened after the drugs, said he didn't know much about hercepton, he'd read up about it, made an appt for 1 mth later. Two hrs after his reception rang to cancel appt, didn't need to see me.  Would ring if he did (the final test had not come through).  Before I saw him the 2nd time I had worked out that I was reacting to the thicker and thicker creams I was applying because my skin is so dry!!   But this is just the itch. I just had m,y port removed last Tuesday and that night I came out in this rash again, just not itchy. Eyelids cheeks neck and right boob (my cancer boob).   Yeah I should go back to doc, but more tests, more waiting, more stress!!

I was also diognosed with thyroid probs just after radio.  Its meant to be a hereditary one, but no one in my familty has had thyroid probs.  Last few weeks of chemo I was really really cold and tired so I suppose this was the onset of thyroid.  Problem is after chemo finished I was improving on my own, and even though I had improved greatly my count was 95 - when the doc said I should of felt bad at 7!!!  I try to ask docs about this as I feel at the moment that my whole system is up and down like a yoyo, but they look at me like i'm strange.  I still have so many things left over from chemo still happening - loss of balance/diziness, energy levels up and down constantly, nerve problems in feet/fingers, across back.  And they all seem to get worse when I have this rash - I think the inflammation is coming back effecting thyroid, and everything. Its not bad, I am still working/driving.  But its not nice and it is worrying.

ANYONE HAD ANYTHING SIMILIAR.

Pam  

herceptin

2 Replies

  • HIT's avatar
    HIT
    Member
    10 years ago

    Thanks Jane

    You are right about the thyroid - it can cause a multitude of probs - I am eating lots of oysters, olive oil, cod liver oil you name it!!  And its nice to know that it can take ages.  Really expected to be feeling a lot healthier by now!!  My onc recommended multivitamins last time?? I think they are just hoping I'll get over it honestly.  I used to have oily hair and skin, hated it!!  Boy would I love it back.

    Pam

    Pam

  • Jane221's avatar
    Jane221
    Member
    10 years ago

    Hi Pam, it sounds as though you've been having a tough time getting over the side effects from your treatments. I hope your doctors are able to help you out with some good solutions soon. I did get some of the dry skin etc that you mention, although I'm not sure if it was due to the chemo or Herceptin :-)  I believe dry skin etc can also be a side effect of thyroid problems, so definitely worth chatting to your doctor about. I generally did ok with Herceptin but was one of the unlucky ones who develop heart issues while on it. Thankfully this was just a temporary problem and after having heart tablets for the final few months of treatment, lower doseages of Herceptin and close monitoring, my heart is now back to normal. I finished chemo & herceptin two years ago but it did take my body quite a while to fully recover, not surprising when you think about what we have been through. I know it's stressful, but keep talking to your medical team and letting them know what's happening as they can usually help, although I can understand your frustration with having to have more tests etc. Best wishes, hope you are feeling bettter soon. Jane xx