trifluridine/tipiracil (lonsurf) with bevacizumab (avastin)

Loomeytunes how is your Husband doing?

Best wishes to both of you Francis ( Husband of Jlikescats)

Sorry for the late reply! Thank you for asking. Jlikescats Neilio57 

So far he prefers the new Avastin and Longsurf regime as opposed to Cetuximab and Irinotecan 5FU, it is certainly less time consuming. No real side affects as yet, but it is only his first week.

After the previous chemo and targeted therapy ceased to work after two years, my husband decided to have a break before starting Avastin and Longsurf, but unfortunately we found out last week that his CEA levels have more than doubled (they had previously been creeping up) and even when they have previously gone up by a couple of points it has followed that the cancer has progressed confirmed by various scans.

Just for clarity, my husband has lung nodules in both lungs, and also nodes in left retroperitoneal and in his neck.

We live for today and still plan for the future, the consultant compiled a report for the insurance company and stated my husband has just short of 12 months to live, but we refuse to believe this as he actually does appear quite fit and healthy tbh and even still works from home. I personally feel that the working has kept him going with something to focus on, but obviously everyone is affected differently and we do appreciate that. I don’t think there is anyway someone could do manual work though!

I hope everything is going as well as expected for everyone x x

Ps, I am glad you started this threadNeilio57 as there doesn’t appear to be too much information on Avastin and Longsurf as yet .

Update: I've now finished my first round of Lonsurf Tablets ( 5 days on, two days off, five days on ) I'm now on my two week break with no Lonsurf. 

I'm pretty sure the Lonsurf made me tired, although sometimes I'm tired anyway. Luckily no other concerning side effects. 

I must add, this is without the Avastin so far, as my oncologist canceled today's IV Avastin, because they assumed my bowell operation wound hadn't healed yet ( it actually has. My GP checked yesterday ) 

So I'm reporting side effects of Lonsurf alone. 

Hopefully I'll be on the Avastin too from next week. 

Hope everyone's doing well. I still consider myself lucky at this point. Yes I've had liver operation, and bowel surgery and have a permanent stoma, but, otherwise still perfectly healthy and feel fine. 

The main struggle is mental health. Being told I probably have a few months to live when I feel physically fine is a hard conversation to understand. 

Take care everyone and enjoy every minute you can 

Neil

Good to hear from you, it seems your story aligns with mine. No real side effects and otherwise still feel okay. I've also been issued with the 12 month to live paperwork which is a bit daunting. But like you, we still carry on and plan for the future. On the one hand I really do think the Doctors cover themselves by saying we might not make it. I'm still always hopeful that we can! Always thinking of you!

Hi Neil,

I am please to read that you have not had any major side effects so far! The same here for my husband, he is just off for a blood test for the next round of his Avastin infusion on Wednesday, but like you a bit tired!

The mental health aspect can be very difficult, but I think my husband and myself live in a Kind of denial and disbelief, he looks so healthy but I am aware that things can change quite quickly.

Just a thought, I was thinking of something I read at the start of this journey, when told my husband was inoperable and incurable. They stated you can spend your time planning your funeral, or spend your time living what life you have left (along with treatment of course) and that is what we have chosen to do together.
We decided we will not spend our days dwelling on what comes next, and ruin each day that we still have together, but that’s not to say I haven’t had any little melt downs, probably two.

My husbands hair has grown back after 2 years of the last treatment, and it has grown back a lot darker, people will think he has dyed it lol! 

Take care

I agree, on the life insurance forms my husband’s consultant just quoted the Sunlight trial of 11.2 months outstanding life expectancy!

Did you have to have the dental check before starting this new treatment? 

Not too bad so far, my husband is just a bit tired, certainly not as bad as the last treatment regime, but can’t complain it kept him going for 2 years. How are you both doing? 

I am going to start my 5th round of Lonsurf/ Avastin tomorrow. Should have been last week but failed my blood test due to low neuts. This has given me a week that I have generally felt well but soon get tired. Probaly helped by the sunshine. 

How is everyone else doing? 

Hi, I'm hopefully starting on Avastin tomorrow, after only being allowed one previous round of Lonsurf due to operation wounds and low neutrophils levels. Similar to you, I generally feel fairly well, just a bit tired. Opening hospital letters is the worst part at the moment. Reading the reports saying that legions previously removed by surgery are coming back and spreading is very unsettling. But..... I'm alright at the moment in myself so we carry on! Id like to actually get to a point where I can accurately report back how my experience of Lonsurf and Avastin are. 

You are right though! A bit of sunshine does wonders! 

Fingers crossed for you! 

Third cycle of Avastin for my husband and the third lot of Longsurf.

No side effects so far.