Cabozantinib.......

Hi eyestar21

I have not used this medication but by responding it will bump your post. Hopefully someone who has used it will then see and respond.

In the meantime I will pop a link to some information that may be of use. You are also welcome to give the Support Line a call and talk to one of the nurses who may be able to give some more information. The number is below.

Cabozantinib | Macmillan Cancer Support

I wish you well with your continued treatment.

Jane

Hi eyestar21 

Sorry you did not get any replies so far, I had never heard of Cabozantinib until I looked it up and see there have been a number of trials since my wife last had any treatment for her Leiomyosarcoma so it was really quite interesting to me to know about this if my wife were to need treatment again.

<<hugs>>

Steve

Hi Steve,

I have been fighting this cancer for the last 16 years and through amazing doctors and health staff they have kept me alive and kicking... My latest treatment is Cabozantinib 60mg daily tablet. It is an inhibitor treatment and after 6 months we are beginning to see small shrinkage to the tumour. I know it has been prescribed for different types of cancer but as yet not synovial sarcoma. I have had a lot of surgeries over these years and now at the age of 70 the anaesthetist has decided I am not a candidate for surgery but because of side effects, I have lost just under 4 stone so they are now reviewing the situation... I wish you and your wife the best for your future...

Just started 60mg dose yesterday so not a lot of run-time yet.  I had 6 lutrathera treatments for neuroendocrine cancer...had to stop when platelets got too low.  I'll try and update as time goes bye

Hi silverfoxDan,

I've been on Cabozantinib since beginning of February 2024, and it appears to be working. Everyone very pleased with my latest PET scan . I've lost just over 4 stone over the months (but not a problem as I had it to loose) because of severe diarrhea. I've sort of lessened this by taking Loperamide 2mg X2 tablets twice a day which seems to have regulated it slightly but not completely cleared it. Apart from the have been able to manage any side effects. We are now looking at possibly reducing the dose early springtime if it continues to block the growth of the tumour. I should say I've have Synovia Sarcoma's for the last 17 years as metastasis cancer, stage 4.. My primary tumour was in my foot way back in 1987. This re-occured 5 years ago in same foot which resulted in me having a lower leg amputation in December 2019. I've had many surgeries, radiotherapy treatments and courses of chemo treatment over the years... Good luck and hope it's successful for you x

Hi, I hope you're doing well and I hope you don't mind me replying this way. I read your about me and it gave me some hope. I was diagnosed with synovial sarcoma in my calf in 2019, I had radiotherapy, surgery then Doxorubicin. All scans clear until 2023 when they found a mass in my lung, I had Ifosfamide in the hope to shrink the mass before surgery, ifosfamide didn't work but thankfully they were able to operate anyway. Last year they found tumours in my mediastinum and the pleura. Radiotherapy last year to the mediastinum seemed to slow growth but the pleura is now growing quickly. Im being told surgery is not an option (because in more than one area) and the only treatment or drug they can offer is Trabectedin. My Oncologist has said they have contacted Marsden and Christie Hospital to find out if any clinical trials, other drugs or private options availableI. I'm currently being treated at Newcastle Freeman Hospital/Northern Centre for Cancer Care. I saw you have had RFA ablation and this drug Cabozantinib which I'm now going to ask my Oncologist about. I was just hoping to ask what chemotherapy you have had, and even if you'd mind me asking who your oncologist is? I'm really struggling to have faith in my team, I'm 37, I have repeatedly had to ask for surgery and treatment and I just feel like they've written me off but I'm not ready to give up. Any advice you could give me, I'd really appreciate x

Or anyone out there has any information, recommendations or advice....x