Kadcyla v Herceptin

Hello JigJog

I really feel for you. My experience with chemo, Sheliding and Covid Vaccine is similar to yours except that I am on ongoing Herceptin & Pertuzumab.

I had a 1st dose of vaccine which started a nice immune response in my arm at the vaccination site within a few hours. I had chemo 5 days later [plus the support steroids]. It stopped the immune response dead within a matter of hours. When getting the 2nd dose 12 weeks later, I asked the locum of my GP who was administering it whether the earlier dose would have worked properly and would I be able to have a test for antibodies to Covid. He said that my question was a very good question....... However, he declined to offer me a Covid antibody test on the grounds that "the NHS had not asked" for GPs to do this. 

Maybe we need to be lobbying to get our antibody status checked out and for booster doses now, if it is shown that we have not developed sufficient antibodies.

What do you think??

Don't stop your meds without a thorough discussion with your Onc and your GP.

All the best

WallyDug

Thanks WallyDug,

Very interesting what you say about your chemo stopping your immune response dead. 

I asked a similar question about my first vaccine dose and received a similar reply, backed up with, 'Well it's got to be better than nothing!'

I think you are right. We do need to be lobbying to get our antibody status checked and to have our boosters now if we haven't developed sufficient antibodies. We just have no idea as to the level of protection that we have. We're all just keeping our fingers crossed.

I'm going to discuss it all through with my oncologist when I see him in a fortnight. 

Thanks for your reply.

Take care

JigJogx

I wonder if it might be worth petitioning parliament? I live in Scotland and health is a devolved matter, so I would need to lobby here. For folk south of the border it would be Westminster or in Wales/Northern Ireland the parliaments there. I have a friend who started a petition of the Scottish Parliament on an entirely different topic. I think it only needs 1000 signatures to go forward for parliamentary consideration. I will look into this - not how I had planned to spend my retirement  tho' ha ha!

Hi Jig.jog

I'm on kadcyla. I have had 4 rounds and have another 10 to go. 

I shielded on my first round of chemo but am back to work as normal on kadcyla.  my oncologist just told me to be careful and keep myself safe since I have had the two covid jabs. I think different oncologists give different advice 

carolyn

Hi Carolyn,

Thanks for your reply. I think you are right. Different oncologists do give different advice. It's new ground for us all. They have no way of knowing how effective the vaccines given during chemo are. They can only tell us to be cautious. My oncologist said,'Just keep away from any bad bugs!' Not easy at the moment. 

We should know more after Monday when the guidance for the clinically extremely vulnerable is produced and whether they are recommending going back to shielding.

Good luck with the rest of the Kadcyla. 

JigJog x

Hi ral I’m also on kadcyla due to residual cells at surgery. Getting my 3rd one of 14 on Wednesday. I’m going back to work as a nurse 22nd November on phased return and obviously careful what I do (istrict nurse so visits triaged for me) I need to get back to work mode even if only for a year when I retire on my terms and not cancers terms) my bcn said many women continue to work on this treatnt and to be careful who I see

Must add I have had 3 to Pfizer dose and flu vac. What more can we do !! I just think I can’t hide away and work will help me mentally 

3rd Pfizer 

Hello Jig Jog 

thank you so much for starting this conversation I’ve found it so helpful.  I’m similar circumstances to you, live alone. Following stage 2 HER2 positive diagnosis in the summer - weekly chemo for 3 months to shrink tumor followed by lumpectomy surgery one month ago.  Although no spread, few stray active cells in Pathology report, so Kadcyla in place of Herceptin injection which know I could tolerate ok -starting tomorrow.  I’m dreading, as only just starting to feel stronger, with hair beginning to grow back and energy levels returning.  Oncologist has confirmed if I can’t tolerate there are options, but I’m so tempted to take my chances and remain on Herceptin as really have to get back to work and v worried not going to be able to manage this with Kadcyla.  Also due for booster Covid jab which Oncologist has said fine - but I feel rock and hard place, concerned about making myself feel even more unwell with jab when it’s not going to offer immunity with Kadcyla treatment anyway.  Antibody test such a good idea.  

That’s so helpful to hear - would love to hear how you are feeling on Kadcyla and if you are managing ok back at work?