Linda5

Hi Jay,
I have been on the leap-004 trial of pembro and Lenvatinib for 15 months (definitely on the Lenvatinib). I’ve had some progression that we’ve managed with radiation but generally it has kept things under control. It’s a tough trial though, lots of blood pressure issues, they watch your cardiac status closely, have some neuropathy, currently having some liver enzyme issues. Tired most of the time, nausea for several months now. From what I hear, there are a few on the trial (I’m in Toronto) and sounds like the results are pretty reasonable across the board, but it’s been a tough slog.

Hope his helps!
Linda

Hi Roberto…I am currently in this trial, since June. Personally I have had good results on my lung mets (down from 1 cm to 3 mm as of my end of October scans) but no response to 2 small brain mets so we zapped those last month). It was a tough start with blood pressure and dizziness issues, so I am on a reduced dose of Lenvatinib.
I do find the treatment difficult, I’m now on blood pressure meds, have nausea on and off, they do lots of heart function monitoring, and I have general fatigue, but as long as it’s working I guess that’s the main thing.
I guess there are a few people on it here (Princess Margaret in Toronto) as one of the docs told me they are generally seeing good results.
Linda

Hi Julie!
I had these many times, we pushed thru all but one time, off for three of four days in conjunction with a recent , if I remember correctly. Mine were very sore at times, I found warm baths helped a bit.
Linda

Hi! I was on Taf/Mek and had these many times. My Onc called them erythema nodosum and said they were a fairly common side effect. Once he put me on a short break for them but mostly we just continued. Mine stung especially if you bumped them or clothing rubbed on them.

Linda

I had this for a few months at the beginning of treatment.  No tips, other than I treated myself to a nice pair of sheepskin lined slippers to wear at home, and found that helped a bit.  

Hi…I’ve been on Taf/Mek twice, stage 4. The first time I had chills and fevers, usually in the evenings, and while they were tough to get through I managed to stay at work. I didn’t have nausea, hardly any rash, and some minor visual sensitivity. Worked full time in a demanding job through for the four months until I moved to immunotherapy.

After keytruda resulted in a limited response and then progression, I went back to Taf Mek and expected the same side effects….wrong! I had the fevers and chills but much worse, cycling every three hours, had to take a break, only had them periodically after, nausea, welts (erythema nodosum), fatigue, sore skin/flulike symptoms. Not usually all at once but on any given day there is usually something going on. My oncologist told me that they find folks that have been on immunotherapy seem to have elevated side effects. I have not been able to work during his period…primarily because i can’t be reliably or consistently there, although I do go in for a couple of hours a couple of times a week when I can.

For nausea they’ve given me Olanzapine, which knocks me out more than Gravol does. I did travel out of country for a few days to attend a graduation, but took a vial of prednisone with me and was under strict orders to come home early if I had any issues. Good luck, hopefully you’ll be ok and able to carry on fairly normally!

Thank you Mark!

Hi Summer…strict rules from oncologist to call when I had a fever, they would advise when to restart. Generally two to three days except once when I also had a bad rash, I think it was six days.
Linda

Hi Summer! I have used this combo and I did have fatigue ( felt achy and tired like I had the flu) and cycled through fevers fairly frequently. Fevers meant a mandatory call into the doc, and usually a short (couple of days) break from the meds then restart. I never had to stop them due to fever or fatigue. For the fatigue, I found mild walking helped, and warm baths and heating pads helped with the aches.
I hope things improve…
Linda

Mine is painfully slow loading too (using an iPad).

Hi – my surgery was similar and was 10 years ago this August.  I have no limitations or discomfort but my right knee still remains slightly larger than my left although better than it was for the first couple of years.  I also still have very little feeling around that area.

i suspect it’s individual depending on what has been disrupted, but way better than not having the surgery!

I believe these are available but funding differs by province.  I’ve had Tafinlar/ Mekinist and ipi but these were paid through private coverage.  I’ve had Keytruda through the government program (was combined with the ipi paid for privately).  This organization provides a good summary of what’s available and who covers 

 

I believe these are available but funding differs by province.  I’ve had Tafinlar/ Mekinist and ipi but these were paid through private coverage.  I’ve had Keytruda through the government program (was combined with the ipi paid for privately).  This organization provides a good summary of what’s available and who covers 

 

Hi Kelly!

I just wanted to chip in on the Oral meds…make sure your son is aware that it’s not as simple as popping a couple of pills. I’m on Taf/Mek and they need to be taken at consistent times and you can’t eat for a couple of hours before and an hour after.  I’ve done both and while I appreciate the convenience of taking meds at home, they actually are more to manage around every day. I do six a.m. (so have to get up whether I want to or not) and six p.m. (so dinner with friends? Need to work out a plan).  

They’re working for me, and I am able to control my schedule pretty well so I’m not complaining. Just make sure he knows the lay of the land.  

 

All the best to both of you! Linda