mrcc - rad001 (afinitor)

This is our story so far.........my husband was diagnosed with metatsatic rcc last june (08). He had his kidney promptly removed. He has one main tummour in the pleural membrane of his lung, lymph node involvement, 2 tumours in his soft tissue (one visible on upper arm ).

He is being treated at the Marsden in London through clinical trials.

He was put on to sorafenib & infliximab, but had to come off after 5 months. He tolerated it extremely well but unfortunetly his main tumour grew.

He then had no treatment for approx 8 weeks during which time a lump appeared on his upper arm which was growing at a scary rate.

He started on RAD001 approx 7 weeks ago. The lump on his arm seems to be getting smaller daily which is great. He had a blood transfusion the other day due to a drop in his heamaglobin level. Other than this he has no side effects.

He has started to get a pain around the area of the base of his left lung which is where his main tumour is. We were told by one of the doctors over the phone, in a nutshell, that the pain was probably due to either the 'drug working' or 'not working'.

This has really put me on edge! We haven't got a scan until the end of september - a long time to wait. This is the 1st time he has had any pain or any symptom at all!! I would love to hear from anyone who has had a similar experience or is taking the same drug.

Love to everyone going through this rollercoaster x.

Hi,

 I just read your message after noticing that no-one had responded.

i'm currently taking Rad001 after Sutent stopped working for my kidney cancer & for the whole time i was waiting for my first scan i was worrying about aches & pains.

As your docotor says, pain is usually shrinkage or growth & i can't say which it is in your case but i would be optimistic especially as the tumour under his arm has noticbly changed. i have had tumour shrinkage & growth during my treatments (not both at the same time) and they do feel exactly the same (like a dull pressure/ache) but rad001 has about the highest effective rate of all renal cancer drugs on the market and you always have to assume the pain is posative until someone says otherwise or else you'll start getting yourself depressed.

i know you'll be having worries about what to do next if this treatment stops working as there is only a few limited drugs on the market for renal cancer but after studying masses of medical journals it looks like even if the drug isn't showing clinical benefit for you currently it does sensitize cancer cells to apoptosis (death) and when combined with treatments such as avastin or chemotherapies such as doxorubicin,carboplatin & cisplatin they synergises these treatments into working in a far superior way to previously. most oncologists will tell you that chemo doesn't work on renal caner but when the cells are pre primed with an mTOR inhibitor 24hrs prior to treatment they seem to show alot more promise.

 i hope this information is benificial to you and brings your hope back & if you need any more info such as sources for this info etc. just let me know.

On 8/12/2009 RPB2009 wrote:

Hi,

 I just read your message after noticing that no-one had responded.

i'm currently taking Rad001 after Sutent stopped working for my kidney cancer & for the whole time i was waiting for my first scan i was worrying about aches & pains.

As your docotor says, pain is usually shrinkage or growth & i can't say which it is in your case but i would be optimistic especially as the tumour under his arm has noticbly changed. i have had tumour shrinkage & growth during my treatments (not both at the same time) and they do feel exactly the same (like a dull pressure/ache) but rad001 has about the highest effective rate of all renal cancer drugs on the market and you always have to assume the pain is posative until someone says otherwise or else you'll start getting yourself depressed.

i know you'll be having worries about what to do next if this treatment stops working as there is only a few limited drugs on the market for renal cancer but after studying masses of medical journals it looks like even if the drug isn't showing clinical benefit for you currently it does sensitize cancer cells to apoptosis (death) and when combined with treatments such as avastin or chemotherapies such as doxorubicin,carboplatin & cisplatin they synergises these treatments into working in a far superior way to previously. most oncologists will tell you that chemo doesn't work on renal caner but when the cells are pre primed with an mTOR inhibitor 24hrs prior to treatment they seem to show alot more promise.

 i hope this information is benificial to you and brings your hope back & if you need any more info such as sources for this info etc. just let me know.

The drug seems to be very good,

i have no side effects from it but then again i had next to no side effects from sutent & it appears to be doing some good. Initially it allowed some growth as the sutent had stopped working, we had to have a drug free window as combining sutent & rad001 had been shown to be highly toxic in clinical trials & then it took about a month to get working properly but now we are suspecting that it is causing the disease to stabalize which is the intended outcome of the drug.

 are you getting this drug through a trail? if not have you thourght about asking to combine it with a chemotherapy to try and get an improved response?

i don't know your health situation or size/no. of mets but if you're health is good, you're tolerating the side effects of rad001 well you oncologist might be willing to let you try this.

if you want a copy of the papers i've found to support this let me know.

On 8/13/2009 RPB2009 wrote:

The drug seems to be very good,

i have no side effects from it but then again i had next to no side effects from sutent & it appears to be doing some good. Initially it allowed some growth as the sutent had stopped working, we had to have a drug free window as combining sutent & rad001 had been shown to be highly toxic in clinical trials & then it took about a month to get working properly but now we are suspecting that it is causing the disease to stabalize which is the intended outcome of the drug.

 are you getting this drug through a trail? if not have you thourght about asking to combine it with a chemotherapy to try and get an improved response?

i don't know your health situation or size/no. of mets but if you're health is good, you're tolerating the side effects of rad001 well you oncologist might be willing to let you try this.

if you want a copy of the papers i've found to support this let me know.

Hi

Yes my husband is receiving rad001 through a clinical trial. His health is very good with no side effects - it's just this pain in his back which is limiting things he can do at the moment, so annoying for him. He wants to be in the gym!

You say that it seems that rad001 seems to be stabilising things for you at the moment, dare i ask the signs.

Our situation sounds similar to yours. My husband was on sorafenib for 5 months & then was drug free for approx 8 weeks until the rad001 trial opened. He's been on rad001 for 7 weeks now. Off to the marsden on tuesday for bloods.

It would be just amazing if his cancer could be halted.

 Whereabouts are you in the uk, where are you being treated?

Hi There,

i'm being treated at Weston Park on a compassionate use program from Novartis.

the signs i've being getting are limited pain in my spine (no further progression) & a feeling of less pressure(against my ribs) in my liver where i have lots of mets.

you just have to stay positive as this drug has got a great track record.

if i can be any more help let me know.

 All the best  

On 8/9/2009 kirstyt wrote:

This is our story so far.........my husband was diagnosed with metatsatic rcc last june (08). He had his kidney promptly removed. He has one main tummour in the pleural membrane of his lung, lymph node involvement, 2 tumours in his soft tissue (one visible on upper arm ).

He is being treated at the Marsden in London through clinical trials.

He was put on to sorafenib & infliximab, but had to come off after 5 months. He tolerated it extremely well but unfortunetly his main tumour grew.

He then had no treatment for approx 8 weeks during which time a lump appeared on his upper arm which was growing at a scary rate.

He started on RAD001 approx 7 weeks ago. The lump on his arm seems to be getting smaller daily which is great. He had a blood transfusion the other day due to a drop in his heamaglobin level. Other than this he has no side effects.

He has started to get a pain around the area of the base of his left lung which is where his main tumour is. We were told by one of the doctors over the phone, in a nutshell, that the pain was probably due to either the 'drug working' or 'not working'.

This has really put me on edge! We haven't got a scan until the end of september - a long time to wait. This is the 1st time he has had any pain or any symptom at all!! I would love to hear from anyone who has had a similar experience or is taking the same drug.

Love to everyone going through this rollercoaster x.

Hi there,

I read your message with interest, as my husband has just started his 9th week of Afinitor.  He was previously on Sutent for 2 years when it stopped working for him.  He feels so much better on the Afinitor compared to Sutent, which started to get pretty rough towards the end of it.  He got his first CT scan today since starting the Afinitor.  We should have results tomorrow.  We are on pins and needles of course.

I think the fact that the tumor on your husbands arm that is shrinking is a great sign and I would just go with that.  I know that it is so scary with every ache or pain.  I keep telling my husband that I really believe he would be showing pretty serious signs if the disease was progressing.

 Anyway I hope you check back in give an update on how your husband is doing.

Debbie