Decodron helped me
 

I go every three weeks for my herceptin treatment and I get decadron (steroid)as a pre-med. I do get a flushed face in the morning, and I take Antivan to sleep a couple of days, but I don't experience any joint pain, and I had it bad. Ask your onc if that will work for you.
Emelie

Heart Damage
 

Has anyone had heart damage from the herceptin, I have L and R Ventricle damage.. Mild they put me on two heart medications and I go see my oncologist July 17th to see if he wants to put me back on herceptin...

L breast quadectomy Oct 3,06 Ductal invasive carcinoma
grade ll , Nuclear grade Intermediate, differentiation, poor
her/2 3+
33 rads done July13,2007
node / neg
R breast surgical biopsy 3 spots

kat in the delta
 

Hi
My Onc never let me do my last 2 Muga heart tests..but feel out of breath and know my circulation is worse because of Herceptin....I am thin and my ankles swell alot and from the bottom of my anlkes to my mid calves...I have brown splotches....from iron deposits because the blood does not flow up like it use to....ANY ONE get These Brown Spots/splotches on ankles going up like a sock ????? kat in the delta

kat I would get to the onc.. and request a test... I don't have the brown spots but ,, but the muga scan caught the heart damage from the herceptin.. are you still doing herceptin..

Herceptin
 

Dear Kat,

I would definitely see both cardiologist and your oncologist. I have been on Herceptin for one yr, no heart problems when I had last muga, probably due for one soon, my dr does them every 6 mo. I know my circulation isn't great as my feet get cold at night but I wear sox to sleep in and it helps. Hope you're doing better, please stay in touch as we all have the same battle.

ginkott1@aol.com

Thank you so much for the reply, the cardiologist put me on two heart medications...my muga scan showed a slight decrease in my left ventricle on the second muga scan so they were doing them every 2 months but the last was a lot of decrease.. he thinks they can put me back on herceptin and watch the heart...

Kat in the Delta and other Herceptin Pals,

Kat,I tried to send you a private email, but could not get it to work.

Brown spots, stiffness, etc....You have had more than your share with side effects. I started Herceptin 12/27/06 and now it is 7/6/07. I feel lucky to say I have only had the minor side effects.

Runny nose...which is now better..subsided a bit after 4 months.
Stiffness when I get up...also is subsiding.
I do walk 5 times a week and drink a fair amount of water.
Have one drink 5 nights a week.
I get lots of sleep.
2 mugas, both good.
Bloody nose first and second day after Herceptin. Actually a little more intense this last time.
I get Herceptin every 3 weeks. Will ask about how they mix it next time.
No problems with my port.

Thanks to everyone who has posted their information, it is so good to share and increase our knowledge. I love the advocacy roll we all take.

All the best, Catherine

kat in the delta
 

sd_____ et al..,
You said you were getting 2 rx's for your heart. I already take a blood pressure pill and a diur. When I went to my Dermotolgist... he gave me another diurectic to enhance the 1st one.. I also take Potassium. I am in pain even if I sit at the computer for an hr..... It feels like a Nawing(?) pain all over.... I have to lie down FAST.... & try to relax.. to make it better... A pain pill helps me in the morning, I have to admit..... My Onc. says that I should not have PAIN and refused to give me any pain pills when I saw him the other day....but..(lite bulb !!) HE had not even received the Tumor Marker test Back ..yet..!!! I am just know remembering that !! ChemoBrained,
Kat in the Delta My chemobrain may be from bad circulation...
R.S.V.P. WHAT WAS ANYONE's MUGA SCORE ? If the Rested-Gaited is the same... my last one was a 48--a yr ago.. hadn't had one since... kat in the de;ta

My onclologist has me get echocardiograms every 2 months. I have been on Herceptin every 3 weeks since Feb. will be done Feb. 2008. The only side effect I have is occassional joint pain when sitting for long periods then only when I get up. Could be from the arimidex or herceptin. Don't know since I started them at the same time. I am told on the echocardiogram the ejection fraction must be above 50% to stay on herceptin. My last one was 62%. Must add I am also on a BP med with a diurectic was on this before BC. I also walk every day which helps the heart and the bones.

HI I have been on Herceptin for a year for first stage Breast cancer. Had my last infusion in August 2007. My back pain and general all over aches and pains has got gradually worse over the year of treatment and seems now almost unbearable at times. My body aches constantly and when I sit now at the laptop I have to put cushions at my back.
Exercise seems to help when I swim the pain goes for a while. I am wondering how long these side effects will last. I have a "crunchy knee" when walking upstairs. Sometimes I fear the cancer has come back but I think that logically it has to be the Herceptin. I also take Tomaxifen and wonder is this a bad combination of drugs. When I tell my onc about the back pain she just brushes it off.
I am happy to know that I am not imagining things and unfortunately there are others out there who are suffering also.

I think everyone's pain level is different. I had joint and back pain before I started treatment for bc so can't be sure they are even related. Have you tried any over the counter items. You might ask your dr first to see what he recommends. I have had back and knee pain for so long, I think a lot of it is degeneration from age.

ginkott1@aol.com

Hi Ladies, Well I thought it was my 6 months of chemo catching up with me. Guess what its not he he. Had my last chemo on 9/28 but still on Herceptin since the first day of my chemo. Went to every three weeks. Friday was my second 3 week dose and I have had more pain, stiffness, etc... today then I have had all along. Call my Doc she is sending me to a pain management Doc. So she most know its only gets worst. Also gonna request a change in my Herceptin. Maybe it will help me.

Thanks for all the good info.

Angela

Kat, my last one was 60, I also take omega 3 4 times a day. Could be helping. The way I understood it at 50 they make u take a break.

Remind ur Doc u need 1

Angela

Re: Herceptin Joint Pain - Does it last the whole year??
 

Thank you all for sharing your stories. I was starting to think I was imagining my symptoms. I have had a runny nose since my first treatment and the joint and muscle pain has become increasingly worse. I have also had fever and chills and some nausea at night. I only have 2 treatments left and hope to get back to normal soon.

Re: Herceptin Joint Pain - Does it last the whole year??
 

Hi All,

Thanks for sharing all the valuable info about herceptin. Last month when my mother had pain after herceptin treatment I was looking for the same information.

My mother was treated with Herceptin+Xeloda with 1st dosage of 8mg/kg. Incidentally there was no pain after the first cycle. During the second cycle, doctors reconstituted the remaining herceptin from first cycle with saline. There was severe joint and bone pain after the second cycle.

I read through these blogs and asked the doctor to administer a fresh batch of herceptin every cycle, as the batch size of 440 mg is almost equal to one cycle's requirement.

The third round onwards, there is no pain. It is to be noticed that the second round which caused pain was also reconstituted using saline only, and not benzyl alcohol. So it seems that the pain is caused by part usage of one batch regardless of the mode of reconstitution.

She has undergone her 4th cycle as well last week and is fine with regard to bone and joint pain.

Hope it helps someone.