Regorafenib Week off

Hello , i hope you are well this week. I’m hoping that’s a good sign rather than a bad one that no one answered your post with the experience you were seeking about withdrawal symptoms. I just wanted to pop in from my usual group as you hadn’t had a reply and wish you well for your next cycle. 

Best wishes

Thanks.

Started second cycle. See what that brings.

I was offered this tablet as last resort, but told that the side effects were very harse, so consultant didn't think it was worth the quality of my remaining life of 6mths, but won't see a yr, so he says. At moment i feel normal and do the same things before i found out that i had 5 tumours, no pain, nothing. But been through all the treatment over the last 15mths, and felt like hell. Sleeping all the time. So i decided against this drug , and going to start my own treatment that i here works well for tumours, can't get it legally in this country. But would like to know if your getting bad side effects, Gerry

I was offered this tablet as last resort, but told that the side effects were very harse, so consultant didn't think it was worth the quality of my remaining life of 6mths, but won't see a yr, so he says. At moment i feel normal and do the same things before i found out that i had 5 tumours, no pain, nothing. But been through all the treatment over the last 15mths, and felt like hell. Sleeping all the time. So i decided against this drug , and going to start my own treatment that i here works well for tumours, can't get it legally in this country. But would like to know if your getting bad side effects, Gerry

Hi Gerry. This is a sort of last chance for me. Diagnosed HCC 2yrs ago. 3 tumours and portal vein thrombosis. Inoperable and not curable.

I live south coast but was offered to take part in clinical trials at Royal Free Hospital London. 

3 different trials (sarafenib was used as the control in 1st trial, I was in the control group) Each trial kept things stable for about 6 months, then I'd have progression/growth. 

As no other suitable trials were available my choice was Regorafenib which I could get locally. No more London trips, bonus!

Side effects I have experienced.

Sarafenib: Tiredness, diarrhoea, dry and cracked skin on hands but not on feet, periods of extremely itchy face. Tiredness was the main side effect. 

Regorafenib (I start week 3 of 2nd cycle tomorrow.) As yet no diarrhoea but I was constipated at start of first cycle, hands and feet are ok. Face itches a bit but no where like with sarafenib. Tiredness! 

I find that when I get up in the morning there are times that after a couple of hours I feel worn out so slouch back in recliner or if really bad it's back to bed

I try to do things to keep me occupied instead of couch potato infront of telly! I have an allotment which is 5mins away in the car. I might go there for a period of time but I take regular sitdowns "veiwing my estate".

Throughout this whole experience I have tried to be positive. But that is getting harder. Each different treatment I have had seems to work for about 6 months. That is now my mind set, "oh this will stop working in 6 months". I dont know how I feel these days. I keep going back to "diagnosis day"  when the prognosis was not good. Without treatment 6 months, with treatment maybe 1 year with the hope of 1 year plus. Well, 2yrs and I'm still here! Has it all been worth it? I really dont know.

In conclusion I can only say about my experiences. At the moment Regorafenib side effects aren't too bad compared to the other chemotherapy and immunotherapy I've had.

Maybe give the Regorafenib a try?

Sorry to have rattled on. I hope it has in some way helped. Please let me know how you are doing.

Chris. 

Hi Poppins55,

Husband finally completed Regorafenib first cycle and after 3 really good weeks the week off is being terrible. Fatigue and loss of appetite are making things difficult here. Did you feel better starting second cycle?

Hi Nobay

Yes, that week off after first cycle wasnt very good. 

I found that by day 3 of week one I was basically fit for nothing for 3 or 4 days and similar on the rest week.

After that not so bad. Suppose the body was thinking "now what are are chucking at me!"

I'm coming to the end of 3rd cycle week off and it has been much better. The fatigue wasn't as bad. I said about the increased fatigue at my last consultant appointment. It was mentioned that I could decrease the dose to 3 tablets per day. I chose not to as scans where due and I wanted to keep the dose consistent. 

Having been on 3 different clinical trials and now Regorafenib over the last 2 years, I've learnt to listen to my body. Regular "rest breaks" are needed. If I push the limit on one day I know about it the next!

It's my consultant appointment this Wednesday and i get the results of scans. Tomorrow i have my monthly gastroscopy, I hate having that, to see if any more varises banding is needed. 

I hope this goes a little way to help. 

Chris. 

Hi Chris,

 Thanks for your answer, . It's really good to know that the next step can be better, I should confess you that was expecting a calm week off after 3 really good weeks on Regorafenib.

Our first and only previous experience was Sorafenib and as it caused him many side effects,pauses and dose reduction were required and the result was  progressive desease. I'm happy you were able to manage the fatigue and keep Regorafenib  full dose.

I'll keep you in my prayers hoping for good news for you!

Sheila

I thought I'd update.

Cycle 5 on Regorafenib was the worst! Side effects were awful . I percevered through it but through in the towel 2 days before start of rest week.

Scan results were however positive, no progression. 

Because of cycle 5 side effects, cycle 6 was reduced from 160mg to 120mg per day. I had to stop after 4 days!

Off treatment until at least next oncology appointment is 25th Sept. 

Now I dont know what to think.