afinitor stopped working

[Sebina]

Good morning friends,

first of all I wish you all healthy and happy New Years!

Last several days have been very tough for me! I have been sad and crying a lot!

last week scan showed a mixed reaction, some tumors have shrunk and some have increased, but there are two new tumors on my liver which worries me a lot!!

I’m unfortunately done with all the pills treatments and iv chemo is my only option for now! my oncologist wants to put me on Abraxane which I should start this week😢

He also suggested Paxman Cold cap treatment that helps preserve hair!

did any of you use that cap or any cold cap and does it work?

I wish you all a good week!

Sebina,

[Bestbird]

Sebina, I am sorry to hear you are dealing with a treatment change. Have you been tested for tumor and inherited mutations? Such tests are very important in determining what drugs you may be qualified to receive, over and above chemo. Also, obtaining a second professional opinion is always wise! Sending good wishes.

[Sebina in reply to Bestbird]

Good evening Bestbird,

I hope you are doing good!

yes I did the guardant 360 and foundation 1 tests but no mutation was found!

I was in CTCA in Chicago first and now I’m in Mayo Clinic it's not that I don't trust my oncologist and his team but I don't seem to have many options and what's left are iv chemo! I’m just terrified of iv chemo!

Best,

Sebina

[Marieleb]

Hi Sebina sorry to hear you are moving to IV chemo. I did the move in March 20 after my previous 4 lines of treatment failed. I too was on taxol for 6 months until Sep 20 , it is a tough one and my advice would be to be kind to yourself, it is a totally different beast and I wished I spent time acknowledging this instead of trying to bulldoze my way through! So make sure you rest and give your body time to adapt. I tried cold cap but it gave me terrible migraines so gave up... It was tough as for me psychologically I had managed 18 months into my diagnosis to never look “ sick “ so having now a physical sign of cancer was a biggie... But I overcame it, it helped that I started chemo during lockdown so no one cared as I wasn’t seeing many people anyway. I couldn’t buy a wig either as shops were closed and now I am used to it . I wear my bold head with pride. Yes I have cancer, yes I have lost my hair, who cares I am here and keep going! It also makes it easier to show people life goes on and keep conversations going without too much taboo... A bit of a sign saying “ I am ok with this and happy to chat to you about my treatment, how I feel...”Finally I was going to mention to you the trial I am on. It might not be suitable but may be worth a chat with you onc... For me it has managed to achieve in 12 weeks what others 4 have failed to do ... no progression!

clinicaltrials.gov/ct2/show...

[WordNerdSharron]

HI Sebina. I've been on Abraxane for three cycles now. I did lose my hair, but my oncology team said that would likely happen. I just went ahead and shaved it off because I'm fine with hats.

I do use cold therapy (and highly suggest you explore it) to prevent neuropathy in my fingers and toes. There are plenty of low cost ways to do this. Some people hold frozen water or soda bottles in their hands and use ice packs on their feet. I bought two small gel packs to use on my hands (nice soft fabric on one side) and I use one large one on my feet and then wrap them in a flannel pillowcase. It is working so far.

I may be weird, but I give thanks every week when my counts are high enough for chemo. I've had precious few side effects (mild nausea and fatigue), and the chemo is bringing down my tumor markers by half every month (I was at 1100 on my CA27-29, and its now dropped into the 200s).

If you don't have a port, I highly recommend taking that option. I've had no trouble with mine since it was implanted in November 2018, and it preserves the veins in your arm that you may need for later.

Best of luck to you! I hope and pray this treatment is a successful one for you.