Forum Discussion

dougal's avatar
dougal
Member
7 years ago

Herceptin and further scans?

Just wondering if anyone out there is having Herceptin injections at present, as after finishing chemo and herceptin through the vein, I am now just having herceptin by injection every 3 weeks, but the first injection omg was the most painful thing I've ever experienced and I'm just curious if others have also experienced these to be painful or have any advise or tips. The nurse kept saying it doesn't normally hurt, well that wasn't very helpful really! she just suggested taking panadol before next time. (now terrified to go in for second injection this Thursday) I'm thinking she must have hit a nerve or muscle maybe. Another quick question, after right side mastectomy and treatment (in my case chemo, herceptin and now also tamoxifen) is it usual to have scans? as when I asked oncologist, how do I know if treatment has worked? was told I won't know and scans are not given unless I have any other symptoms anywhere else. I just feel scared and not really reassured without having scans. Again any opinions or advise would be so much appreciated.

10 Replies

  • kmakm's avatar
    kmakm
    Member
    7 years ago
    My eyelashes thinned but were OK until my double mastectomy & recon operation when the tape on my eyes ripped out two thirds of what was left. Not. Happy. Careless and thoughtless theatre staff.
  • Afraser's avatar
    Afraser
    Member
    7 years ago
    My last eyelash was found lying on my cheek when I looked in the mirror one morning. I was quite sad. Until I looked VERY closely to see the tiniest row of new eyelashes! They still didn't grow back long and curvy (just as they had never been before)! Can't have everything. 
  • Sister's avatar
    Sister
    Member
    7 years ago
    Mine hasn't grown back curly, either but has a distinct direction about it - just not the direction I want!  To add insult to injury, one of the few good things about my hair pre-chemo was that I had a nice crown, just where it should be. It has grown back with a double crown to the surprise of my hairdresser.

    I found losing my eyebrows quite distressing although I got quite good at drawing them in.  Then one day I looked in the mirror and noticed that they were growing back.  It didn't take long.
  • dougal's avatar
    dougal
    Member
    7 years ago
    Thanks @kmakm so hopefully another week or so and I will start to see some hair grow. Did you loose your eyelashes to? If so how long before they grow back? I only lost them right at the end of chemo which is pretty annoying as I thought I was going to keep them
  • kmakm's avatar
    kmakm
    Member
    7 years ago
    Hi @dougal. After TC I had no hair, no hair, no hair and then boom, at the six week mark it started growing really really fast. Not curly though. Which I was a bit disappointed about! Always fancied having curly hair. It's a bit wavy on top and a weird texture though.

    My understanding of radiotherapy is the same as @Blossom1961's above. Lots of factors at play. 

    Let us know what happens with your hair! K xox
  • Blossom1961's avatar
    Blossom1961
    Member
    7 years ago
    My hair is growing back with just a wave which is what I had before, but anything is possible still. I am not having radio but this was my choice. Not everyone needs radio just as not everyone needs chemo. A lot of factors are taken into consideration. Type of cancer, margins, size, stage, type of surgery, pathology reports, etc. I always have a huge list for my onco. She just sits back in her chair with a smile now until I go through my list, then she does what she needs to. 
  • dougal's avatar
    dougal
    Member
    7 years ago
    Everyone tells me it will grow back really curly, that will be interesting! I was also wondering (oh dear a day full of questions!) why I don't need radiotherapy as well as TC chemo, herceptin and tamoxifen as I read so many people have radiotherapy as well as chemo, I appreciate everyones treatment will vary but again I wasn't really told why I don't need radiation as well. I need to start making longer lists of questions to bore my oncologist with! you always feel rushed so I forget to ask things.
  • Blossom1961's avatar
    Blossom1961
    Member
    7 years ago
    My hair started growing back about seven weeks after finishing AC chemo. Very slow to begin with and took quite a while to thicken on the crown. I was on Taxane during this time so that may have slowed the whole process down. I have another nine herceptin to go.
  • dougal's avatar
    dougal
    Member
    7 years ago
    @blossom1961 Thank you for putting my mind at rest regarding scans. I know what you mean about cannula being painful to. I ended up with one in my foot, in hospital, as they couldn't get it in veins in the usual places! oh well, I'll just have to hope I get a different nurse this time for injection that doesn't hit a nerve, maybe she injected it too quickly and i've heard if it's cold that will also cause pain. Glad you have finished your chemo to, will be lovely to have hair again although after five weeks post chemo not much sign still yet.
  • Blossom1961's avatar
    Blossom1961
    Member
    7 years ago
    @dougal It sounds like it was too close to a nerve. I finished chemo end Oct and continued with three weekly herceptin injections. The initial injection always hurts me as they struggle to get it in. However, it usually only niggles for about five minutes after inserting. When I had my mastectomy in November the Anaethetist put in a cannula which caused me heaps of pain. They tried to use this same cannula when I woke up after surgery to put in antibiotics. WOW PAIN. It was too close to a nerve. Even the saline on its own was excruciating. Ask them to use a different spot next time. I ended up refusing further antibiotics or anything through that cannula. In regards to scans, they will only do them if they suspect a possible problem. My mammogram is due again in April for my real breast and then they will clinically test (grope) the flat side for any oddities. No scans will be taken unless something is not clear.