New ? I have been on Herceptin 5 years weekly with a miss only when I got CHF - Page 2

sarah · 08-19-2006, 05:04 AM

i was given magnesium for leg and feet cramps - seems to help. also good for calcium absorption.

Barbara H. · 08-19-2006, 08:02 AM

Hi,
I never had cramping with Herceptin, but I am really getting them all over now that I am on Navelbine. The other day I watched with fascination how my hand started to cramp and twist almost as if it were in a spasm. I also get cramps in the abdomen. I'm concerned because I start school soon and don't want to double over in front of my students. I was going to ask my oncologist but he canceled my appointment last week.
I'm glad this thread was revisited because I have been searching on the net for this problem.
Thanks,
Barbara H.

tousled1 · 08-19-2006, 10:16 AM

I am on Herceptin only and am experiencing bone pain and cramping. Oncologist says it can't be the Herceptin so she sent me for a PET/CT scan and I'll have the results on Thursday when I see her. If the scan is clear I may consider taking a break from the Herceptin.

Carol H · 08-19-2006, 01:59 PM

I am looking into moving to Ireland, where my husband comes from - I live in Dundee Scotland am 37 yrs old, have 2 kids(aged 9 and 7) and desperately want to resettle back in Ireland-I have had advanced BC for 6 yrs now and its spread to my bones and right(only remaining) breast(mastecomy and chemo on and off for 4 yrs and been on weekly herceptin for over 3 yrs now and 4 weekly intravenous Zometa(bone treatment) and also take daily low dose morpg=hine tabs etc for pain.
I am trying to find out if the treatment and support is as good in the Rep of Ireland as it is in Scotland (my hosp Ninewells has its own cancer research facility -does Dublin or anywhere else in Ireland have one)- would my treatment be consistent and would I be putting myself at risk as I am doing so well here - was given 12 months to live 3 yrs ago and still here but bone spread isn't going away but staying put!!
Is St Lukes in Dublin the only hospital with an Oncology Dept - I plan to move to Co Cavin - whats this hospital like - any info would be appreciated so much as I am planning to discuss this with my consultant on Tuesday next week - I have more family and practical support in Ireland and want my husband and children to be settled well over there so when the time comes for me to die they are already established and settled in school etc so please any info would be of so much terrific help.

Carol H, Scotland

chrisy · 08-19-2006, 02:20 PM

Hi Carol,
I don't know the answer to your question, but you may want to post this question as a new thread so people can see it more easily and respond. I think I've seen postings from Ireland before; perhaps one of these folks will be able to give you some information.
Keep up the fight!
Chris

chrislmelb · 08-19-2006, 05:32 PM

Tricia Keegan has left message for you in a new thread.
Christine

Marily · 08-19-2006, 11:35 PM

Hello All,

Just to update.. I went off the Herceptin for a about 2 months, after I had the bad allergic reaction to it, but I have been back on with it double diluted and running over 3 1/2 hours. I also take IV benedryl. (They also gave me hydrocortisone but I went hyper on it) I am on magnesium, quinine, and many vitamins. I was ok except of some slight cramping but this is again coming back stronger. I started having the Alisa test run and have gradually gone from every two weeks of single dose Herceptin to every three weeks. The Elisa test has gone from 7.1 (normal is 12.5) it tells how active Her2neu is in the body and evidently if I understand correctly How it may be trying to begin a cancer tumor again. I have gradually been going up and now am 11.7.

I had to stop the non steroidal anti inflammitories since my kidney function is being compromised (we are testing for this but my nephrologist feels they may be about 48% functioning now.) Those pills have kept the pain of side effects buried. Now I have a lot of pain in ankles, legs, wrists etc and flu like symptoms.

With my heart meds Coreg 100 mgm daily, HCTH, Diovan, my ejection fraction is back to 60%.

Now we need to again look at the Herceptin dose and time between administrations. I will have my Elisa run on the 25th to see if it has increased again. If it is over the 12.5 I guess I will have to go back to weekly Herceptin. We had read that Herceptin stays in the body longer than was first expected but I possibly react faster? Since I am very Her2pos, highly estrogen pos, and progesterone pos that my cancer is too aggressive to change the dose. I will let you know more after the 25th. Is anyone else doing longer time between doses? I am waiting to fit the rules for Tykerb.