Herceptin - Quick Side Effects Poll

TMarina

I don't have many SEs from herceptin.  I mentioned having nausea with my first H only infusion, but I think that was left over from the Taxol.  This past infusion, on Wed. (#14!), made me more tired than usual.  Usually I am a bit tired the day of and day after infusion, but I am still very tired today, even after a good night's sleep.  My stomach bothered me the day of also--just rumbly and upset, and food didn't interest me either.  So the SEs aren't always the same! 

I had also mentioned previously that my heart function decreased (from 65 to 51).  I am on a bp med (enalpril) and that has helped--my function is at 56 now.  I'll be checked again in 3 weeks (6 weeks from my last one).

I think my hair and nails are growing slowly also.

Like ishobie said--I'm not complaining--much easier than chemo!

ishobie

Hi Lago

maybe so, i stopped the chemo in september and actually my nails did start growing. It wasn't till recently they got brittle and ugly. I started using Barielle nail strengthener on my fingernails and the past week or so, they seem stronger. guess I should use them on my toe nails too I forget sometimes how toxic the chemo was and that it takes a long time to completely flush it out of your system.  I am definitely better but nowhere near 100%. 

ishobie

Tmarina  --yup no complaints here  glad to be done with chemo and ALIVE with hair too

ishobie

Grace-i just read ur post. I thought I was going nuts, whenever I take a hot shower or hot bath, I am beyond itchy and red blotches on my stomach and chest area appear.  very interesting....!!!

Cowgirl13

The soles of my feet had all these gross cracks and peelings.  It was creepy and it took 6 months for it to go away.  It started like 2 or 3 days after my first TCH.

lago

Cowgirl when my feet started that on THC I put virgin coconut oil on them and work socks over that. works like a charm.

Lilah

My feet did that as well on Taxol/Herceptin -- but I suspect it was from the Taxol because it went away soon after I was done with the Taxol (and long before I was done with Herceptin).

Stephy1

Lilah, I can cope with the pain, well I'm used to it now - July this year can't come soon enough and hopefully it will all be over. 

 Janette, yes I have a runny nose most of the time, the worst time was during chemo when if I wasn't for ever drying my runny eyes I was wiping my runny nose. 

Upon reading all of the previous posts it sounds as if we are all experiencing the same side effects. As we all speak to our oncologists you would have thought something would have been mentioned to the drug company responsible for herceptin.  By the way I live in the UK, are all you guys from the US ?

joleen918

Hi there...

I saw that you are taking benedryl for the rash...I have this horrible rash all over my body. Just finished my 17th Herceptin Trtmnt. Do you take it once in the morning and once at nite? Is it the OTC pill benedryl or the gel cap?  Anything would really be helpful for me. Thank you

Lilah

Stephy -- I'm in the US, yes.  I think if you go to the Herceptin site it does talk about side effects.  In the big scheme of things these are all minor (except the heart damage) and they do go away (in most cases even the heart damage goes away and thank goodness everyone does not get that).

Stephy1

Thank goodness I dont have any heart problems - fingers crossed. My MUGA scan came back 59% for a start off and now sits at 58%. 59 and 58% of what I dont know, I have asked but the nurse who was giving me my herceptin didn't know. 

Lilah

It's of 100% Stephy -- but anything that is 50% or higher is good and, I am pretty sure, you don't want to it to be higher than 75%... I was around 56% - 59% throughout my treatment (including pre-chemo) and then for some reason my last MUGA was 65%!   I suspect it's variable but you are fine with those numbers.

Omaz

stephy - When the heart makes its big pump of blood to the body it pumps out a certain amount of the blood in that chamber.  If it pumped it all out (which it doesn't do) it would be 100%.  If it pumped out half it would be 50%.  Lilah explained what the %'s mean good.

Stephy1

Omaz, Lilah, Thank you so much for explaining that to me. It's a comes to something when you have to rely on the internet and forums to find things out which oncologiests and nurse specialists should be explaining to you.

siegma

In addition to the nail peeling, coughing, fatigue, etc. I have had signifigant left ventricle damage but I'm hoping that I can regenerate.  They are treating it as "heart failure" but my understanding is that everything is within "normal" limits.  I have between two and five Herceptin treatments left, if my heart can make it. 

Omaz

siegma - I am sorry to hear that your heart has been affected.  I have read that herceptin heart problems usually clear up on their own over time.  Sortof like what I am hoping will happen with my chemo induced neuropathy!  have you had the herceptin every 3 weeks since chemo?

siegma

For chemo-induced PERIPHERAL NEUROPATHY my oncologist suggested Vitamin B6, to be taken every day.  My neuropathy was so bad that I had trouble walking and writing, even dialing a phone.  It must be taken every day, even when PN starts to improve.  This is anecdotally said to be a "miracle" vitamin for about half the people with this problem; another 30 percent have signifigant but not total improvement; the final 20 percent have little improvement.  For me, I had horrible PN with regular chemo (not herceptin) and B6 was a miracle for me.  My problem was that it worked so well, I had trouble remembering to take it.   

siegma

Omaz- Yes I had chemo, then surgery,then radiation, then Herceptin which should be for a total of 12 months, to the extent that my heart cooperates.  Every 3 weeks, yes.  

Omaz

siegma - I have been taking B6 since about tx 2, I am 11 post final now.  I also do glutamine.

TMarina

siegma--sorry about the heart trouble!  My seems to be doing fine now--I have another MUGA on the 21st to make sure the bp meds are still helping.

Omaz--I still have neuropathy too--have had it since colon cancer chemo a year and a half ago, and Taxol made it worse.  Other than some numbness, it doesn't bother me too much--just have to be careful not to burn my fingers!  I can't work right now either, because I can't be out in the cold and part of my job is doing recess at the elementary school.  I'll get disability pay until it warms up outside!  Anyways--hope yours improves soon!

Omaz

TMarina - Mine is mostly numbness too in my feet, ankles and calves.  My hands thankfully are so far ok, just a bit.  It got worse with my last herceptin infusion (number 3 herceptin alone).  My onc assured me that it wasn't the herceptin but the rad onc was wondering if I had some decreased nerve blood flow from anemia or less heart function.  I don't know.  I have another infusion next Tuesday.  I am thinking that I will ask to do the weekly dose rather than the 3 weekly dose.  That's way too info but I have been worrying about it.  I am just worrying about everything right now!

lago

Omaz: I was told that nueropathy can peak up to 5 months after chemo ends… then can start to get better. Granted I hope mine doesn't get worse. I have it in my left heel (numb). What I have now is tolerable. I take 500 mg of Acetyl -L-Glutamine every morning.

formbygirl1

Hi,

 Just joined this site. I am 1 year after being diagnosed with breast cancer and now back at work. I am on Herception every 3 weeks and no problems except I am very tired. Have spoken to other people who have had my treatments and told to give it time.I am not a patient person and used to have plenty of energy and now find it frustrating that I tire easily and have no home life as I am tired.

Any suggestions to help and how long will this go on for?

I have my hair growing back great and nails are ok now, weight has stayed off [ size smaller in trousers now] and i`m eating less but enjoying my food. I also have a beautiful grandson who was born December and I am very proud of him but would like to enjoy him more without feeling tired after an hour.

Omaz

Thanks Lago.  I sure hope it doesn't get worse. 

Smile_On

I was also told by my onc. that the neuropathy tends to be worse and much more noticeable in winter months with colder weather...fingers crossed that it will ease for many of us this spring.

TMarina

yes, my neuropathy definitely got worse after I was finished with chemo--esp. after the first chemo I had--it got worse for a couple of months.  I finished Taxol mid Oct. and It started improving around the first of Jan.

formbygirl1--Hi!  I know what you mean about the energy!  I am a young-ish grandma (I'm 46) and my grandson wears me out!  Some women my age still have young kids at home--I don't know how they do it!  I never was real energetic (slow metabolism due to thyroid), but after 2 cancers and all the tx that goes with them, I am beat!  I won't be going back to work until end of Aug., so i'm working hard on getting my strength back.  And my wonderful little grandson helps with that! 

This last Herceptin made me real tired, for several days, and that is unusual for me.  We'll have to see what the next one does.

KAJDerby

Fatigue is my number one issue with the herceptin.  My last one won't be until May.  Hoping I get my stamina back after that!!

kathleen1966

I've had seven herceptin †reatments so far on the three week schedule, my first without chemo three weeks ago. I have had no side effects. But I am six weeks out now from chemo and hair growth is still very slow....

VickiSam

Ladies,  Fatigue, insomina, drippy eyes and running nose .. Yes, these symptoms continued up to 4 months,   after Herceptin finished.  Just getting stronger and feeling better, week by week.  I finished Herceptin on 8/28/10.

What I found, is that chemo affects each of us differently, some sail thru, while others suffer and struggle.  But, the bottom line is that we make it to to 'that finish' line. 

Strength and Courage,

Vicki Sam 

LindaKR

Started chemo - taxotere/carboplatin w/Herceptin 6 weeks after mastectomy, rcvd chemo every 3 wks x 6 & herceptin weekly, then in October started receiving Herceptin every 3 weeks during 30 rads, and have continued, I should be done with the herceptin in May. I always get headaches for 3-4 days after herceptin infusion, both when I received it weekly and now that every 3 weeks, I also experience muscle aches, and neuropathy of the feet, but thought those where left over from the chemo and probably from the AI that I'm taking.  I do take oxycodone 1-2 times daily for the pain, it helps with the headache also.