A rest from herceptin

Jk48au's picture
Posted by Jk48au in HER2+, on 24 Jun 2013, 12:26PM

Hi everyone I haven't been here for a while. Finished Docetaxel in February, which I had with herceptin, and things have been going along much easier than when on I was on the chemo. However my oncologist has told me I may need a break from herceptin as my heart function has dropped to 54% and I have to have another gated heart test plus an echo cardio one before I see him in August. If it is 50% or lower I will be put on a break. I am having anxiety attacks about this as I am afraid that while on the break, the cancer may get in again. Has anyone had a break from herceptin? If so how long? Do you just pick up from where you left off, or start all over again?
Hope someone can give me some answers or questions to ask for when I see the onc again in early August

Bye now
Jill

Comments

Mich x's picture
Hey JillI am sorry in that I can't relate to what you are dealing with but justed wanted to let you know I am thinking of you while you are going through this tough time.Lots of love always, Mich xoxoxoo

Hi mich

Jk48au's picture

Thank you for your kind thoughts Mich. it is why this site is so good, because people like you, who may not be able to help with advice on a particular subject, but can still help by giving support and encouragement. Thank you so much.

My husband has been wonderful throughout this whole journey thing, but now feels helpless as we just have to wait and see what will happen. I have my tears at times too. Today however, was spent enjoying our grandsons as they played running out in the open air and rolling down the grassy banks. We both enjoyed the simple pleasure of doing nothing special through an almost 6 year old and a going on 10 year old........JOY!!!!!

Herceptin

LouiseTurner's picture

Hi Jill

Yes I have had a break from herceptin. It was to have surgery. I went off after 4 months and was off for 3 cycles. When I started again I had an increased dose (700ml I think) then have settled into the normal routine.

I'm told they rarely have patients going off herceptin for surgery so they weren't too sure about when to start again, and the first infusion (the increased dose) I had a reaction. So that was a worry. I basically picked up where I left off as we only get the 52 doses.

I too was/am concerned about stopping, I have more surgery later in the year when I will need to stop again. I don't know what to think really, I feel like there are so many unknowns, and the doctors don't really seem to know either. If patients follow the standard of care the doctors have lots of cases to help make decisions, but if you diverge from that standard they seem to guess.

I feel like I have no choice but to trust their decisions while keeping a good check on myself and push them for answers/reasoning if I need to. I believe we need to be vigilant with our own care too because we suffer any consequences.

It sounds like you are on top of things and asking questions. Sorry I can't help further,
Xxxlouie

magicmum's picture

Agree - ask questions as much as you want to, it is your cancer and you need to know. I know that many docs and others advise against Google but I googled everything I couldn't see in the booklets I was given. You learn to sort the rubbish from the facts.

Dr Denis Slamon the inventor of Herceptin is at UCLA research - that site might have some anserws for you. DOn't be afraid to question.

 

much love

magicmum

Thank you

Jk48au's picture

Hi magicmum and Louise for your suggestions. I have been finding this 'break' hard to digest, but am coming to terms with it. You do tend to have to trust the doctors, and my oncologist is very easy to talk to, and willing to answer questions. Just worried about my heart function and how long the break will be. When I had my herceptin this week I asked the nurse about it, and she said I will be closely monitored. So I guess I will have to wait, I am hoping my heart function will not drop any further, then I won't need the break. Always trying to look on the positive side.

Thanks again

Jill

Break from Her2

susie Q's picture
Hi Jill, This time last year, after 3 lots of Herceptin along with 2 other chemo drugs I to had to have a break becasue my heart did the same as yours. I ended up in isolation ward for 5 days becasue my blood count dropped also. I had to stay off herceptin until I finished my radiotherapy, I missed 3 lots and then started again with another big dose. My heart count along with everything else came back to normal and I have now finished all my treatment. I stayed really positive through the whole thing but asked lots of questions and felt satisfied with the answers given. Request tests if you want them, it is your body and you should be able to find out what ever you can.All the very best wishes for a complete recovery from this unreal journey we have all travelled.

Hi susie

Jk48au's picture

Thank you for sharing your herceptin break with me. My oncologist is very good and always willing to explain things to me, but with this, I am sort of at a loss at what to ask. I have voiced my concerns that having a break may allow the cancer to return, as I have not had the full treatment yet. He just said that they will monitor me carefully, but no explanation on how. I can't really ask too many questions yet, as I haven't been put on that break. I am taking fish oil capsules to try and help the heart function. Other than that, I will have to wait until the gated heart and echo cardiographs are done, then I will see him again and possibly a cardiologist, if necessary. This journey of ours is full of twists and turns isn't it?
Take care on your own journey and thank you for your input, it is really appreciated

X Jill

susie Q's picture

Living Proof

susie Q's picture
I have just watched the movie LIVING PROOF, about our SAVIOUR Dr. Dennis Slamon who helped develop the drug Herceptin. It is a gut wrenching true story and one we can all relate too, I say thankyou to him and to  those who fought with him to get it approved.  A must see movie. I found it at my local video store.

magicmum's picture

I LOVED that movie - what a hero. I sent an email to him thanking him for saving MY life.

Made me cry though knowing how much it mujst have hurt to say no to ppl for the trial knowing he maybe could have saved them.

magicmum

Heart test

Jk48au's picture

Hi everyone

I have had my gated heart test today, I tried to be totally relaxed while it was doing its thing, and with each swoosh of the massive machine I was saying 'strong heart beat' over and over again.
I got the read out, and the nice young radiographer said he thought it was much the same as my last one, so I took a look and it had come up a percent from 54 to 55. I know that is still not the best, but at least it isn't down further. Have been trying to walk and exercise and also taking fish oil three times a day.
See oncologist on Tuesday will let you know what he decides. Either way, my daughter in Hong Kong has just paid for our fres over there for Christmas as last year it was practically a non event.
Bye for now

Jill

Tamoxifen

Jk48au's picture

Hi everyone

After my heart function coming up and not down, I had treatment with herceptin and the ok for another four doses, then I see the oncologist and hopefully have the last dose in November.
Now I have another question I hope someone maybe able to help with. I have been on Arimidex but my foot which I have pins in and hands have been aching so he decided to put me on tamoxifen 20mg per day. It is apparently his favourite drug as it has been tried and proven to be effective. As soon as I took it, I had a huge thirst and felt weary and light headed. Saw my chemist who suggested I take it at night, to see if I felt better. It does seem to help, but interested in others that may have had Similar

side effects.

Bye now

Jill

pleased

susie Q's picture

so pleased that your heart scans where all ok and you can progress with Herceptin, sorry I cannot help with the other stuff tho as I didnt have to have any hormone treatment, but wish you well with it.

Sue.

magicmum's picture

I am doing reasonably well on Arimidex. Joint pain/stiffness is the worst thing but otherwise I'll cope. I sometimes don't sleep terribly well but in the scheme of things I'm alive.

My last gated scan was really good so that was a plus. Going for a bone density in another month so fingers crossed for that too.

magicmum

Side effects

Jk48au's picture

Thanks to all who have written in with advice and/or support. I am feeling better with the Tamoxifen now, taking it around 6.30pm each day. It seems to allow me to sleep the worst of the effects off, so hopefully it will continue that way. I do still get tired, it could be the herceptin or a range of things, but, as magicmum said in her reply, in the big scheme of things, I am alive,
All the best to you all on your own journey, thank you

Jill

Carol's picture

Glad to hear Tamoxifen works for you! I cant take it courtesy of a dvt 20 years agos. I was lucky to not have side effects from Herceptin although did have allergic reactions to various things on my journey and now am gluten and dairy free.
Perhaps if you think of it this way -
a) at least I have had some Herceptin.
B)They are constantly discovering new drugs and treatments for us.
c) There is a reason they check for known side effects of drugs: Herceptin heart issues I know of several people who only had the first few treatments then stopped permanently. Osteoporosis with arimidex but then one gets Fossamax for free and in my case my oncologist was very pleased that after 7 years including 5 on Fossamax, my bone density has improved.
D) As tamoxifen has been around for a lot longer far more studies and safety data is available

Hope all continues to go well for you,
Carol

Hi carol

Jk48au's picture

Sorry to hear you could not take tamoxifen due to previous dvt, I have also had reactions to various things such as the chemo etc but I agree with you that tamoxifen has been tried and used for many years, and that is also the reason my oncologist likes it. Yes I have had heart function problems with herceptin, but have been able to continue, while others have not been able to.
I too feel lucky that I have come through this journey and am able to see the light at the end of that very long tunnel. It is not an easy journey for any of us, and I wish you, Carol, luck with the rest of your journey too.
Thank you everyone for your input it has been very helpful

Regards
Jill

Finished at last

Jk48au's picture

On 7th January 2014 I had my last dose of Herceptin. Previously I had my heart scan which has come up to almost normal, but I was sent for a bone scan as a precautionary measure, due to pain in my lower back. Yesterday I was given the all clear, only arthritis there. Next week I will get my port out and then I only need checking every 3 months.
All over, so why am I now feeling anxious and tears? I have coped through it all with the help of my husband, family and friends, but now I am feeling a bit scared as I feel alone?? What is going on? It has been very hot here and I hate wearing the fake boob as it makes me hot. I get very itchy in my wound area even though I use lotion on it twice a day. Am I just being a sook or do I need to talk to my doctor? Sorry I am not usually so down

Finished at last

Jk48au's picture

On 7th January 2014 I had my last dose of Herceptin. Previously I had my heart scan which has come up to almost normal, but I was sent for a bone scan as a precautionary measure, due to pain in my lower back. Yesterday I was given the all clear, only arthritis there. Next week I will get my port out and then I only need checking every 3 months.
All over, so why am I now feeling anxious and tears? I have coped through it all with the help of my husband, family and friends, but now I am feeling a bit scared as I feel alone?? What is going on? It has been very hot here and I hate wearing the fake boob as it makes me hot. I get very itchy in my wound area even though I use lotion on it twice a day. Am I just being a sook or do I need to talk to my doctor? Sorry I am not usually so down

Finished at last

Carol's picture

Congratulations. Now you get to work out the new you. Keep exercising it helps you sleep and hopefully decreases rosk of lymphoedema.

 

Most of us find it difficult once treatment stops and we no longer are pushed by the weekly or 3 weekly routine of medical procedures and visits. You are so lucky you have your husbands support. Get away and have a break and celebrate the end of regular treatment.

 

 

Thank you

Jk48au's picture

Thanks Carol, it is comforting to know I am not the only one who feels lost after treatment stops. I have just signed up for the Encore swimming exercise course designed for us breast cancer survivors. We are going to spend a week away visiting friends and family, and I agree, I am so lucky to have my husband who has been so suortive right the way through

Herceptin

Tanya C's picture

Hi Jill,

I was reading all you blogs back to when you you were taken off herceptin back in June last year.  I've had the same experience like you they found my herceptin after 4 doses went down to 45%.  My oncologist took me off it for 6 weeks since then I have had another blood gated test and this revealed that my heart function went back up to 69%.  I was wrapped with this, but my oncologist has decided to leave me off herceptin at the moment because I am due to have surgery in February and they are scared it might drop again postponing my surgery.  I have just started Tamoxifen yesterday, could anyone tell me what kind of side effects you may have experience taking this drug and how long does it take before you start experiencing these effects.  Louise I looked at your pictures from surgery and it scared me, but it just goes to show how brave you were and I hope I can do the same.  Janey I love your new blog and hope to meet you in person one of these days.

LouiseTurner's picture

Hi Tanya, I'm not brave. I just persevere. I'm sorry if my photos scared you though. I felt the same when I first saw a women's journey with tissue transfer. Hard as it was I don't have a single regret. Now 9 months on and I am more fit and healthy that I have ever been. I have completed chemo and herceptin, I dodged tamoxifen and have had femara for almost a month. Perhaps an increase in flushes but nothing else reportable.

I hope you follow the blog through to the latest photos. I have just one more revision surgery planned in feb then I'll update it again.

Good luck to you, take care xxxlouie

Tamoxifen

Jk48au's picture

I have found that tamoxifen makes me feel very tired, and I need to keep well hydrated and not skip meals or I get very light headed. I take it at 6.30pm every night so I can sleep off the tiredness overnight. This effect began almost immediately with me, but now the herceptin is finished, I am hoping the tiredness may not be as bad. Best wishes for the rest of your treatment Tanya

LouiseTurner's picture

Also, I met Janey and she is an awesome woman. Xxx


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