Stick with Phesgo or move to Kadcycla?

[LoulouWebb]

Really sorry for replying months later - have not been on the forum for a long time!  I decided not to move to Kadcyla in the end.  I finished my courses of Phesgo.  Had 15 sessions of radiotherapy, have currently had 2 bone infusions with 4 more to go (every 6 months for 3 years) and am on Letrozole for 10 years.  My hay has grown back (very thick and curly - totally different to how it was before) and I am feeling good.  I experiencing pain in my left (affected) breast, which seems to occur mainly when I inadvertently sleep on it, or bump into things.  My recent Mammogram (this month) was clear mercifully, however, I still worry about recurrence just about every day - not sure that ever goes.

How are you doing?

[Mkin]

Hello. Hope you are doing well. I'd be interested to know how did you decide and what the results were? I am in the same situation right now xxxxx

[WestieRuth]

hi there my name is Ruth

Tomorro w is the anniversary of my cancer diagnosis 22/12/20

er positive 8 her 2 37mm 3 abnormal nodes

neoadjuvant 18 chemos jan to june

masrectomy full pathoplogical response than they found 15mm lobular cancer same breast

on 17th cycle of phesgo feeling tired and spotty

hair has grown back thick and wavy

mental health is poor on anti depressants and councelling

like to hear from ladies in similar scenerios

love westie ruth xxx

des

[shosh]

Thank you so much for sharing.  Following stage 2 HER2 positive breast cancer, 3 months of chemo and lumpectomy - due to small amount of residual cancer remaining -my Oncologist wants me to have Kadcyla - I’ve been so worried about further horrible side effects when still recovering from surgery and chemo - and it stopping hair growing back and being able to get back to work - so good to hear you are coping with it.  

[Shine13]

My reasons were the nhs nice guidelines recommend kadcycla for people with residual tumour after chemo before surgery as there was some research to show it is better.  But it all depends on the type of tumour receptors etc.

[Guest user]

I am a Secondary patient, not Primary. Kadcyla follows Herceptin and Perjeta for HER2+. If I cannot have a small progression in one of my lung tumours irradiated, I will need to move to Kadcyla from Phesgo. 

Angel Eyes x

[LoulouWebb]

Hi, I decided to stick with Phesgo.  I spoke with the oncologist and he didn't have strong views either way and said he would be happy with me sticking with Phesgo.

Can I ask why you will almost definitely move to Kadcyla in January?  What reasoning have they given?

Many thanks,

Louise

[Shine13]

Hi my story is a 1 mm residual after with lumpectomy surgery and chemo presurgery. I swapped to kadcycla post op as the science papers shows  it is better though do your own research.  It was only approved for primary breast cancer last year it used to be just for secondaries because it was so expensive.  You only qualify if you have residual after the first line of treatment.

My hair has grown back while on kadcycla and I feel OK am working full time I have a bit of neuropathy though not to bad

[Guest user]

Hello, 

Just wondered what you decided to do?

I am on Phesgo at the moment but will almost certainly need to go onto Kadcyla in January. I am HER2+ and hoped to get longer than the year I have had on Herceptin and Perjeta. Please PM me if I can help.

Angel Eyes x 

[LoulouWebb]

I was diagnosed with a 7mm Her 2 positive cancer in my left breast and also in one of my lymph nodes in February this year.  I had two magseeds injected into both areas of cancer to guide any future observations.

I was completed 4 cycles of Docetaxel and have been having 3 weekly Phesgo injections since April which will continue until next April.   In June I was told, following an ultrasound scan, that I had had a complete radiological response (the cancer had shrunk to nothing).  I was scheduled for surgery to remove any cells around both the magseeds which I had end of July.

I have now been told that in fact, during surgery they tested the original cancerous lymph node, and because it still had residue cancer (microscopic) they had to go ahead and remove all the lymph nodes.  They also had to remove a 10mm cancer from my breast.  This has come as quite a shock as you can imagine.   When I questioned the USS results, I was told 'ultrasound scans are only 70% effective'. (?)  When I said 'if it started at 7mm, and now, even after all this treatment, it is 10mm - does that mean the treatment has not worked?' I was told 'well, we don't know for sure... the original cancer could have been larger than 10mm but not picked up properly on the scan....'  To say I am shocked, confused and upset is an understatement.  

I have now been offered 14 cycles of Kadcylca instead of Phesgo, but the consultant said it's not a hard and fast change - I can decide, as he would also be happy if I just stayed on Phesgo, so the choice is mine...!

Has anyone been in a similar position?  Obviously 3 weekly (10 minute) injections of Phesgo for 7 more months,  compared to intravenous infusions for about 9 or 10 months would be preferable, but I'm not sure its worked so far anyway.  Does Kadcycla give hair loss as per Docetaxel?  Having just started getting a decent covering of hair again, I'm not sure I'd like to start all over again...  I just don't know what to do or which way to go.  Any thoughts and advice appreciated.  Many thanks.