Back into the land of treatment....sigh...

Hi,

i know im a bit late with comments, but i have had herceptin and a potacath for over 12mts now.

Herceptin had very few side effects with me, runny nose and a slight headache ,im now on Tykerb witch is as i belive is a sister drug to herceptin and has more side effects as the herceptin..As for the port its the best thing i have had throughout this whole process of treatment i have had mine for nearlly 2 years now and im still using it and sometimes forget i have it in and forget to tell new doctors that are treating me..

hope this also puts you mind at ease

Beka

Hi Celeste

I have a port too and now that I've finished the herceptin, my surgeon will be removing it during my next surgery when he finishes my reconstruction. 

My veins gave up half way through my chemo and I had to postpone one of my Taxotere treatments to have the port inserted.  Like Chrissy, mine was done as a day surgery.  Very quick and a bit of pain but absolutely worth it.  It is fantastic not to have people at the chemo suite hunt around for a vein that's behaving itself.   

My 2 cm insertion scar is taking a long time to fade but other than that and a little bump a few centimetres under my collar bone, you wouldn't know it was there.

Whether you're using it or not, the port needs to be flushed every four to six weeks by nursing staff, which would be a huge hassle if you didn't need it for active treatment.  Otherwise, I'd be tempted to keep it so I didn't have another little scar when it gets taken out.

Helen.

HI Celeste,

They put the portacath in your chest and it sits just under your skin. You can leave it there for up to five years no problems. If you have to have a year of Herceptin It would be a good idea to get on put in. I had it under general anethetic and day surgery. It goes straight into your right ventricle of your heart.

Ask your Medical team about it. Google it and find out about if before you talke to them.

Good luck and hope its a breeze for you. Chin up and take care.

Chrissy D :)

Hi Chrissy, thank you for the encouraging words about Herceptin. I'm so pleased you say its nothing like chemo....that was a nightmare! Can you tell me what involved with a portacath? By the end of chemo, my veins were collapsing and struggling to cope, so a portacath may be a good option for me. Where do they put it? Arm? chest? Thanks again Chrissy, take care, Celeste

Hi Helen, congratulations on getting through Herceptin! I bet you are glad its over! My biggest concern is the possible side effects to the heart, but it sounds as though they carefully monitor that. I am also taking Tamoxifen and have joint pain. Some days I feel about 100 years old, but am told it is the Tamoxifen causing this! I also had Taxotere, and had side effects many months after finishing it. My toe nails started going bad some months after finishing it which was really weird. Thanks again Helen, take care, Celeste

Thanks Annie. Yes that makes me feel a lot better. Glad to hear you've had a good experience with Herceptin. Yes I was very annoyed to get the news about the trial drug...apparently it is effective...just not as effective as Herceptin! I've been given the choice of whether to go ahead and have Herceptin or not, but I've decided to go ahead. I'm one of these people who will grab any chance to lessen the chance of a relapse....thanks again, Celeste

HI Celeste,

I started Herceptin in March. I havent had any side effects but it affects some peoples hearts so i have to have ECG Ultrasound every 3 months. I have it every three weeks and its a breeze compared to chemo anyway.

What a bummer you now have to start Herceptin after you thought you we almost home free.

I have a portacath which they access to give me the Herceptin and I had my chemo with so it didnt kill my veins.

Take care Hugs :)

Chrissy D

Hi Celeste

I finished 12 months of herceptin yesterday.  YAA HOO!!!

I would say cautiously that I had no side effects at all from the herceptin.

However, my heart scan results went downwards from the baseline one I had last year, and I had to take a short break from herceptin in January, but was able to start it up again and stay on it for the full course.

I am curious whether my joint pain and splitting finger tips will stop now that I'm finished with the herceptin.  I'm on Tamoxifen also so it's difficult to know which one of them was causing the joint pain.  And my fingers split on Taxotere, which I finished in November last year, but my oncologist said that couldn't be the cause of my splitting finger tips so far down the track.

Good luck with your treatment,

Helen

Hi Celeste,

I am doing Herceptin and am about 8 months into it with 4 months to go.I have it 3 weekly.I have found it very tolerable.Minimal side effects.I just find i get a bit of a runny nose afterwards.About day 3 i get a bad headache but i expect this and pain killers relieve it.

So overall i havnt had much trouble at all .Hope that makes you feel better.Just a pity your trial drug wasnt affective.Im doing a trial at the moment taking exemestane instead of tamoxifin.Iwould be really annoyed if they told me it wasnt working.Dealing with the side effects of this has been hard.

Goodluck

cheers Anniex