herceptin and Covid-19

Hi Goldfinch77

im borderline off chemo but am on Herceptin. Got the text on Monday letter on Friday .  I think it's because it an antibody drug also can effect 1 in 10 immune lvevels .

Im on a call with Onco tomorrow going to ask what puts us on list . 

Won't make much difference to me as I intend staying put lucky enough to have garden and lots to do in house ..

have read on here that NICE now say 6 months is good enough protection  and their onco has stopped Herceptin . Im due no 5 tomorrow .

will post if anything of interest is said 

Margaret x

Hi Goldfinch77

I was a bit surprised to get the letter too, which my oncology team told me is because I am on Herceptin and Perjeta infusions. Both these drugs are monoclonal antibodies, which can lower your immune system and affect its response to infection.  I had four cycles of these drugs with Docetaxel before surgery in January, during which time I was not allowed to work at all because of the infection risk.  Since my surgery I am only on the Herceptin/Perjeta, and my oncologist was happy for me to go back to work full-time because she said that the effect on my immune system was much less than with the chemo.   She did check my white and red cell counts before I was cleared to go back to work, as I work in frontline health/social care, and they were in the normal range.  So I guess that anyone on antibody treatment, as detailed on the gov.uk list of high risk conditions, is included in the extremely vulnerable group just because of the possibility of having a compromised immune system on the drugs.  

A recent study has shown that 9 cycles of Herceptin/Perjeta give almost the same result as the 18 cycles which are currently advised by NICE guidelines, and as Northerner has said, there are also new findings which recommend just 6 months of treatment with Herceptin.  So you may already have received a high level of benefit from the drug.  I am about to have cycle 8 of 18 in the coming week, and my team said last week that the treatment should continue as planned for the full 18 cycles, unless new guidelines for England are introduced due to the COVID-19 crisis. I will report back if there are any changes when I see my team next Friday.

All the best with the rest of your treatment.

Blackcat20 xx

Thank you, I’ll be interested to hear what your onco says. I read something similar about 6 months being ok and 12 only makes a tiny difference.

hope it goes well tomorrow.

xx

Thank you Blackcat20,

That helps a lot.

Good that you’re nearly halfway through.

xx

Hi Goldfinch77 

Busy morning Onco call then hospital for Herceptin . 

No questions from Onco with regards having Herceptin so I asked and she said yes of course . 

I asked is it Herceptin putting us on high risk and the answer was active Chemo the biggest factor in reducing immune system  but Herceptin   CAN  reduce some , so that would put us on extremely vulnerable list . She did ask how many I had ( today was no5 ) 

Stay in Unless for treatment was the message . My bloods fine ( chemo finished in Dec ) gave me a figure 5 where  concern would be at 2 . Only prob was high calcium so bloods m

next month and Adcal ( on Bisphosphonate) could be reduced ..was 2 a day now 1 a day may go to alternative days .

Heart echo deferred for one month .Which I'm happy with had I not been she would have done it .

Not too bad been in unit ... big signs sayinybwash hands with soap water before entering and leaving / they using masks when close . I asked for my blood sugar to be checked as it was high at end of chemo down two points so happy with that as well .

I deliberately wore easy wash clothes ,and left plastic bag nearoor at home placed clothes in bag then thru house to washer . I then showered and got on with life in my little bubble.  Might sound OTT but felt the need as in a chemo unit with other high risk . 

Keep well 

Margaret x

Hi Margaret,

Thanks for this. I'm glad you got through all of your treatment well today.

I just had a call from the Macmillan nurse at hospital to say my last two Herceptin were cancelled - I ve had 15 out of 17. She said it was because of the virus - not worth the risk - so implying there was some risk as your people said. Also said the new research showed 6 months was enough.

I'm having bisphosphonte by infusion - next one due June will wait and see what will happen with that.

Wishing you all the best with the rest of your treatment.

Janet

Hi...I put in a separate post that my Onco had phoned to advise that I could stop Herceptin now due to the recent research. I had my 11th (was supposed to be 17) last Tuesday. She said newly diagnosed patients are offered 9 doses in their treatment plan.

My 2nd bisphosphonate infusion was due end of June but was told this will be delayed by at least 4 months.