trifluridine/tipiracil (lonsurf) with bevacizumab (avastin)

From Jlikecats Husband

I started on Lonsurf + Avastin last October and waiting to start Cycle 8, it should have been yesterday but neuts were to low so try again next week. Every cycle has been a week late starting due to low neuts. 

When I had my January CT scan some nodules had shrunk including the one on my Adrenal gland, April scan showed no changes.

I definatly feel better than when I was on Panitumab + flofori., except I get very tired.

My joints are more stiff now but that might be due to age and a life time of physical work. I still do some work but not physical.

Hi Jlikescats , my onco gives me 5 injections of filgrastim to do daily at home on week 3 of the cycle to boost my neutrophils, are you getting those? If not it might be worth asking your onco.

Hi Neilio57, 

I am sorry to read that!

It’s all definitely a rollercoaster of emotions but I am pleased that you are feeling good.

Will that be the first scan you have had since undergoing this current treatment? I will be keeping my fingers crossed for the results ️

Still a bit in limbo with my husband, the scan a few weeks ago showed progression but he has been allowed to continue with this regime until the next scan in Aug, as they can’t be sure if the progression started whilst on a break from the last treatment before starting Avastin and Longsurf or during.

Wishing you all the best ️

My husband has also missed some cycles due to the same reason.

No injections have been offered either, I asked what we could do to improve the situation and the nurse claimed there wasn’t anything! 

Hello Cecile,

That sounds quite promising with the scan results and very encouraging, but I can understand the apprehension about the CEA though. My husbands CEA is the highest it’s ever been, but he has progression, but the Onc isn’t sure when this occurred as he opted for a 3 month break from the last treatment before starting Longsurf and Avastin.

I am pleased that you are also feeling good, as with my husband and that’s a bonus.

Wishing you all the best ️

Cecile

My Neuts were low again this week so no treatment today, back for a blood test on Monday.I will ask Oncologist about filgrastin. Do you have any side effeects from it ?

Regards to all Francis

Hi! I've only had one scan on this treatment regime and it showed stability apparently. Maybe slight shrinkage in the liver. But since then I've been taken off Avastin in fear of it making internal issues with fistulas. So god knows where I'm up to now. I'm due a scan in a couple of weeks I think. Just trying to get on with life but it's hard. I've joined a group at my local Hospice which has been really positive. I suppose the good news is that so far, on the Lonsurf, I'm still here and I'm reporting similar experiences to others on the same treatment. Seems to be working to a certain extent. Fingers crossed for us all

Hi Jlikescats , no side effects at all, it is just 5 injections to do at home per cycle.

Good luck, hopefully your neutrophils are back up on Monday xx

Thanks

Bit of an update folks ..... After having a good response to Lonsurf and Avastin, followed by a scan that showed stability and slight shrinkage of diesiese, I had a possibly unrelated short stay in hospital due to internal build up of fluid from my healing wound on the operation site from the operation I had in December. I say possibly unrelated, because, the wound on its own can have fluid build ups if the inside heals slower than the outside and the fluid has nowhere to go. However, my oncologist was blaming the Avastin for the build up, and so took the Avastin off my treatment regime. I was also having antibiotics for the fluid build up, so the Lonsurf also stopped while I finished the antibiotics course. 

The next scan has showed progression of the cancer. A few more bits in my lungs and liver.

Which doesn't surprise me, as I've been taken off the things that were working! 

But now, the oncologist at Clatterbridge have used that as an excuse to say that I've become resistant to Lonsurf and have taken me off treatment altogether. Which means what it sounds like. They've given up on me and basically I've been told to wait to die. Obviously I'm furious about this but I can't force them to give me treatment. Currently fit and healthy, going on hikes and seeing all the usual local summer carnivals, a few long weekend breaks away in Wales etc. Most of the time I forget anythings actually wrong with me and maybe have the odd paracetamol once a day. 

How unbelievably frustrating is this whole journey. 

So you all know, the times I've had the Lonsurf and Avastin, it's worked. So, if you're on it, there's hope. 

Disappointed to see the NHS, or Clatterbridge in particular giving up on a patient and denying treatment. 

Hope you're all doing well!