HER2 Support Group Forums - View Single Post - Please post your two cents on Herceptin "side effects" real or perceived!

MagsB · 07-05-2007, 01:48 PM

Hi All,

I have been on this site before, but for some reason, I missed this thread - which was exactly the thread I was looking for!

I was diagnosed in Sept 2005, HER2+, ER/PR+, Stage II, age 27. I've had a mastectomy, reconstruction, AC & Taxotere chemo, am a year into Tamoxifen and recently started Zoladex injections to stop my ovaries. I started Herceptin in Oct 2006 and should have been on it for a year. However, I had my last infusion on the 29th May, as I was my Onc thought that quality of life issues prevailed over the benefits of completing the full year of Herceptin.

I've had a number of side effects that I thought I was imagining! I had complications with my reconstruction and it took a full year after my surgery for the wound to heal. 2 weeks later I started Heceptin and the wound opened up again... Now that it's been 5-6 weeks since I had my last infusion, I think the wound is starting to heal again. I have also had severe fatigue; severe cracking of the skin in my hands (I've have contact dermatitis for years - but it's never been this bad - so much so that I found it difficult gripping the steering wheel or holding a pen); generally my skin healing from minor cuts is very poor; I have a lot of back and shoulder pain; I have the runny/crusty nose; I get a lot of blood blisters and ulcers inside my cheeks and lips; within 6 months, my eyes changed prescription and now need glasses to drive and watch TV - I never wore glasses before; I‘ve had 6 months of acid reflux, which as almost gone now that I have finished Herceptin. I also get leg cramps, hot flushes, vaginal discharge, have difficulty sleeping and my memory is as bad as it was during the chemo, but I think these last effects are Tamoxifen/Zoladex side effects?

When you read back though all these effects - individually they are all minor, but all together, it’s been a nightmare. As Herceptin is so new to be used in early stage BC treatment, the Onc was no help in preparing for these issues. You know chemo is going to be awful, so you are prepared for it... However, with Herceptin, I thought I should be fine and went back to work part-time, which has been really hard. I'm glad that I was able to get Herceptin, but equally, I am glad that I have finished. I just hope that the effects start to decrease soon - I seem to be keeping the plaster companies in business with the amount of plasters that I go through each week for my cracked hands!!

The other thing I have found difficult throughout my Herceptin experience is the fact that no-one seemed to listen to me... You would think that with such a new drug, the doctors would listen more carefully to us, even though, intellectually, they believe that we should not be experiencing these effects. It took 9 months to get my Onc to listen to me…

Anyway, I'm off the Herceptin, so hopefully my quality of life will improve...?

Thanks for reading my rant!
MagsB

07-05-2007, 01:48 PM	#205
MagsB Junior Member Join Date: Mar 2007 Location: Ireland Posts: 1	Hi All, I have been on this site before, but for some reason, I missed this thread - which was exactly the thread I was looking for! I was diagnosed in Sept 2005, HER2+, ER/PR+, Stage II, age 27. I've had a mastectomy, reconstruction, AC & Taxotere chemo, am a year into Tamoxifen and recently started Zoladex injections to stop my ovaries. I started Herceptin in Oct 2006 and should have been on it for a year. However, I had my last infusion on the 29th May, as I was my Onc thought that quality of life issues prevailed over the benefits of completing the full year of Herceptin. I've had a number of side effects that I thought I was imagining! I had complications with my reconstruction and it took a full year after my surgery for the wound to heal. 2 weeks later I started Heceptin and the wound opened up again... Now that it's been 5-6 weeks since I had my last infusion, I think the wound is starting to heal again. I have also had severe fatigue; severe cracking of the skin in my hands (I've have contact dermatitis for years - but it's never been this bad - so much so that I found it difficult gripping the steering wheel or holding a pen); generally my skin healing from minor cuts is very poor; I have a lot of back and shoulder pain; I have the runny/crusty nose; I get a lot of blood blisters and ulcers inside my cheeks and lips; within 6 months, my eyes changed prescription and now need glasses to drive and watch TV - I never wore glasses before; I‘ve had 6 months of acid reflux, which as almost gone now that I have finished Herceptin. I also get leg cramps, hot flushes, vaginal discharge, have difficulty sleeping and my memory is as bad as it was during the chemo, but I think these last effects are Tamoxifen/Zoladex side effects? When you read back though all these effects - individually they are all minor, but all together, it’s been a nightmare. As Herceptin is so new to be used in early stage BC treatment, the Onc was no help in preparing for these issues. You know chemo is going to be awful, so you are prepared for it... However, with Herceptin, I thought I should be fine and went back to work part-time, which has been really hard. I'm glad that I was able to get Herceptin, but equally, I am glad that I have finished. I just hope that the effects start to decrease soon - I seem to be keeping the plaster companies in business with the amount of plasters that I go through each week for my cracked hands!! The other thing I have found difficult throughout my Herceptin experience is the fact that no-one seemed to listen to me... You would think that with such a new drug, the doctors would listen more carefully to us, even though, intellectually, they believe that we should not be experiencing these effects. It took 9 months to get my Onc to listen to me… Anyway, I'm off the Herceptin, so hopefully my quality of life will improve...? Thanks for reading my rant! MagsB