Is there anybody on Regorafenib trial drug?

jain db said:

Dear Rubyrose,

 

I have been reading your mails for a cole of days. My dad has progressed on all protocols of chemotherapy. We have procured Regarofenib from USA . He starts next week. Wanted to know all the problems you are having

 

ritu

There haven't been too many problems, the main one is tiredness.  He's had occasional temperature of 38.5 but panadol always brought it down.  He's also had diarrhoea intermittently. He has an illeostomy. It is a fairly new drug originally with completed trials in America but there doesn't seem to be a lot known about it on this website.Good luck with your Dad. Hope all goes well. Regards Rubyrose

Vickilg said:

Is this the pill?

Hi there... Is this the new pill form of chemotherapy?  I am not it if it is but the doctor said that it will most likely be an option for me in the future.   Wishing you both the best.

My husband takes four pills every morning after a light breakfast for three weeks, then has one week off, so is a four week cycle.  The first few weeks he had blood tests every week, now has been put to monthly visits with the oncologist/blood tests.  We have been told this drug probably won't shrink the tumours but should stop them growing. When scans were compared ie 1/8/12 scans, treatment commenced 5/9/12, scans done 11/12/12. Tumours had increased slightly but taking into consideration he was off treatment from 1/8/12 to 5/9/12, tumours would have grown.  This means in fact the tumours probably haven't increased at all and the drug is doing it's job. For him to be eligible for this drug, he had to have exhausted all other chemos. Good luck with everything and email me if you need any more info. Regards Rubyrose

jain db said:

Dear rubyrose , Did you

Dear rubyrose , Did you husband has tumours in the liver also ? If not where else?

 

reg

ritu

He has bowel cancer with mets to liver and peritoneum. Inoperable. Regards rubyrose

janie1 said:

Hi Rubyrose

It's good to hear the drug has been keeping things under control.  With so few people on it, there has been little info.

Are his blood tests normal?  My oncologist thought that the bilirubin goes up almost from the first cycle, but again, there are few people on it since the trial, so there is still little data on it.

Thanks....and wishing you both all the best.

Hi Janie 1 - my husband's billirubin went up right from the start of taking regorifenib. It hovers around 45. If it goes higher than 62, he will have to stop taking the tablets. His last CEA was around 1768 but before it had gone up to 2,100 and was rising as he was on avastin which had stopped working.  Rubyrose 

jain db said:

drowsiness

Dear Rubyrose,

My father just started Regarofenib yesterday and he is very drowsy from first day. Is this normal ?

 

reg

ritu

Tiredness has been the main side effect. Rubyrose