Herceptin side effects

Thanks everyone for your comments. It feels better to know that I am not alone. Some days I feel on top of the world - I have all my energy back and feel fantastic. Then other days i can barely move I feel so tired- and dont want to talk to anyone! And also getting a rash again too. It's so hard to predict when it will happen. Not long to go now. I finish in December so really hoping that I bounce back when it's finished ??

Hi,

I've been on Herceptin and Anastrozole for 4yrs in that time I've experienced a variety of symptoms - overall fatigue, mouth ulcers, conjunctivitis, general aches and peripheral neuropathy, ie, very tender feet and on some days its excruciating just trying to stand. It took my oncologist about 18mths to really 'hear' just how bad my feet can be. I've tried a few prescriptive drugs but the side effects were severe and so now I rely on Voltaren for the days that I work.

I 'push through' the fatigue but the effort takes its toll and I've become a bit of a recluse. If I get an invitation I accept knowing that I feel better although the fatigue doesn't go away.

Part time work is important. I made the decision to tell only one person about my health as I didn't want it to be how I was identified - it just feels more normal if someone asks if you had a late night because you look a bit tired. I might respond with, 'No, took me a while to get to sleep.' I go for normal as much as possible.

To be honest I sometimes long for a feeling of vitality. I recall waking up excited about the day and what I had planned to do. It seems like a far memory. There have been some 'good' days and I cherish them.

I appreciate the BCNA posts and its a way of restoring my resolve to live each day and find  something to enjoy.

Beryl

Hi Tani, I have been on Herceptin for 5yrs now, fortunately with very few side effects, tiredness & bone pain being the main ones especially a few days after treatment so it seems to be okay for me. It's a long journey & there will be a light at the end of the tunnel eventually, hang in there. 

Hi Tany

Thats interesting.  I finished hercepton 12/3/15. I am still having dizzy spells, mild nausea balance generally a bit wonky. 'Honestly I can't remember if it started during chemo/herc or after. This is still continuing - with ear pain (spasmodic). (Onc thought I may of damaged my ears during chemo, had scan of brain and all seems fine )   I also had a rash after the last two doses and then this rash came back after the surgery to remove port.  - red eyelids, face, neck and breast.  This rash stirs everything up - the dizziness, my new thyroid prob, the radiation area burns like I've just had radiation (specially that bone at the base of neck), my boob gets red, my bones ache, sometimes feel the neuropathy gets worse (not sure) and the bloody tiredness etc etc.  Takes a couple of months to settle again.  Am hoping it won't happen again!!!  Also my skin/ hair/NOSE  is so dry and I am reacting to creams Ive used for years.  And I continue to drink a lot - am so thirsty (No diabetes) Know I should get checked out by a doc but honestly everything still feels so shit and I don't know where to start.  Onc will have a list of questions next appt.  Hopefully it will go away.  

Pam

Hi Tany

I finished my herceptin treatment approximately 7 weeks ago. Everyone told me it doesn't make you sick. I was ill every time I had it. Within 1/2 an hour of the infusion starting, I would start to feel peculiar. I would get like vertigo. Going down in the lift after treatment, I would almost fall over if I didn't hang onto the railing. It made me feel nauseous and very tired and I would be like that for about 36-48 hours afterwards.  They slowed the infusions down to try to help with the side effects. There was another lady going through the treatment at the same time as me and it had the same effect on her as well. As my oncologist said, it is a chemical that is being pumped into your body and some bodies just can't cope with it. My heart remained good whilst having treatment, so that was a plus. I think too that it is a compounding effect. I had chemo, then radiation, all the while having the herceptin. The fatigue continued to get worse after finishing chemo and radio. It may be unusual but you're not the only one. Good luck with it. Karen xox

Hi Tany, It's been a while since I had Herceptin but I still remember being tired & suffering from bone pain. Particularly in areas that I suffer from weakness. My heart was ok. But it needs monitoring on Herceptin. Get it checked out. Deb

Hi Tany, thought I'd fill you in on my story while on Herceptin, this may not apply to you but perhaps worth checking out with your oncologist?

I finished Herceptin in July 2013 and although, like you, I felt OK when I was having it on its own after chemo, I did start getting very tired and weak and a bit breathless. I mentioned it to my oncologist and she arranged for an ECG & ultrasound to check my heart function. These tests showed that the Herceptin had caused some heart problems (cardiomyopathy). For the last 6 months of my treatment I also had to see a cardiologist regularly to be more closely monitored and I was on heart tablets and my Herceptin dosage was changed. Thankfully, the issue was temporary, and my heart function went back to normal within about 6 months of finishing treatment, so I no longer see the cardiologist and I don't take the heart tablets anymore. I was really worried when they first told me about the heart issues, but the close monitoring and other measures meant that I could complete the treatment, which was really important and it provided me with some reassurance.

As I say, this may not be the issue for you, and I hope you are able to find a solution and wish you all the best for the remainder of your treatment. Jane xx