Val from Canada

I do not believe that Val is on ipi anymore, I k now she has been looking at the TIL treatment.  She emailed me a few weeks ago some research she had done for TIL.  I hope she is doing well.

I do not believe that Val is on ipi anymore, I k now she has been looking at the TIL treatment.  She emailed me a few weeks ago some research she had done for TIL.  I hope she is doing well.

Thanks to all who have asked about me lately. 

First of all, Jan..how is your husband?  I haven't been on MPIP very often so I am not up to date on all the news. 

I am aware that Sharyn has passed away and that's a tough blow, we e-mailed and compared notes when we were able to get together in Montreal as we were both on the ipilimumab trial.  We were so hoping for ipi to give us a few years of NED.  But, it is a good treatment, it stopped my cutaneous mel and Sharyn definitely noticed a difference with her sub-qs…unfortunately, we were the first two on the treatment and had to wait a long long time for it to start up..giving mel a free hand with us for a while.  Our friend Donna in VT has had great results and she had same symptoms as us..melanoma on right leg.  Yes, Donna we will get together for lunch in Burlington once I get over this hump!

I had a terrible month of May and am overwhelming tired.  One of the sub-qs became infected and I ended up in the hospital for 5 days…discovered I was allergic to sulfa in the antibiotic…now that will be included with penicillin allergy.  Three days later, ended back in emergency for 8 days with an infection in the left lymph node…CT scan showed it's grown from 2 x 3 cm to 8 x 6 cm.  I was put on IV morphine immediately, the pain was out of this world.

Fortunately, my surgeon from last year was at the hospital over the Victoria Day long weekend..week before U.S. long weekend.  He came through for me ordered another type of antibiotic..infection in that lymph node.  He also ordered scans which showed that not in my organs, praise the Lord.  And came to check on me so many times. Needless to say, I am off the compassionate ipilimumab trial…I missed the 3rd treatment due to the allergy and then oncologist said since I had growth in lymph node, I'm off (I still have my doubts about that since it was 'infection' and that could have caused the 'growth').  So I went home last week loaded with all kinds of morphine (one for morning, one for night night and and one for every 4 hours when needed – I try to avoid taking too many) as well as antibiotic (changed the type from the IV one, this one made me vomit but I am now off of that as of today…I'm going to make note to tell doctors about this antibiotic). 

I saw the radiation oncologist (lovely young chap, only one who makes me cry, he holds my hand or pats my leg and then I blubber).  He plans to do palliative radiation to lymph node….BUT I want to to have another go at it and see if I am eligible for TIL…I'm afraid radiation will delay trial again and my sub-qs are growing like crazy on my right leg. I wonder if the chemo given during TIL would be a substitute?? Anybody have thoughts on that, would be appreciated. I also plan to ask about that.

I've just had an MRI for the brain today (apparently that is more detailed..of course, it gives me another reason to worry) because that's requested for eligibility…as well as many other documents and scans that I am getting with the help of my clinical nurse.  All to do, when you are not feeling up to par!  I remember Jenna's mom saying it was the red tape that holds everything up…so true. My oncologist advised that TIL is rough but it's been a long 3 years and I pray I can stamp the beast out.  As one doctor says…one day at a time.

I will keep you posted soon as I know what I am doing.  Val xx

Thanks to all who have asked about me lately. 

First of all, Jan..how is your husband?  I haven't been on MPIP very often so I am not up to date on all the news. 

I am aware that Sharyn has passed away and that's a tough blow, we e-mailed and compared notes when we were able to get together in Montreal as we were both on the ipilimumab trial.  We were so hoping for ipi to give us a few years of NED.  But, it is a good treatment, it stopped my cutaneous mel and Sharyn definitely noticed a difference with her sub-qs…unfortunately, we were the first two on the treatment and had to wait a long long time for it to start up..giving mel a free hand with us for a while.  Our friend Donna in VT has had great results and she had same symptoms as us..melanoma on right leg.  Yes, Donna we will get together for lunch in Burlington once I get over this hump!

I had a terrible month of May and am overwhelming tired.  One of the sub-qs became infected and I ended up in the hospital for 5 days…discovered I was allergic to sulfa in the antibiotic…now that will be included with penicillin allergy.  Three days later, ended back in emergency for 8 days with an infection in the left lymph node…CT scan showed it's grown from 2 x 3 cm to 8 x 6 cm.  I was put on IV morphine immediately, the pain was out of this world.

Fortunately, my surgeon from last year was at the hospital over the Victoria Day long weekend..week before U.S. long weekend.  He came through for me ordered another type of antibiotic..infection in that lymph node.  He also ordered scans which showed that not in my organs, praise the Lord.  And came to check on me so many times. Needless to say, I am off the compassionate ipilimumab trial…I missed the 3rd treatment due to the allergy and then oncologist said since I had growth in lymph node, I'm off (I still have my doubts about that since it was 'infection' and that could have caused the 'growth').  So I went home last week loaded with all kinds of morphine (one for morning, one for night night and and one for every 4 hours when needed – I try to avoid taking too many) as well as antibiotic (changed the type from the IV one, this one made me vomit but I am now off of that as of today…I'm going to make note to tell doctors about this antibiotic). 

I saw the radiation oncologist (lovely young chap, only one who makes me cry, he holds my hand or pats my leg and then I blubber).  He plans to do palliative radiation to lymph node….BUT I want to to have another go at it and see if I am eligible for TIL…I'm afraid radiation will delay trial again and my sub-qs are growing like crazy on my right leg. I wonder if the chemo given during TIL would be a substitute?? Anybody have thoughts on that, would be appreciated. I also plan to ask about that.

I've just had an MRI for the brain today (apparently that is more detailed..of course, it gives me another reason to worry) because that's requested for eligibility…as well as many other documents and scans that I am getting with the help of my clinical nurse.  All to do, when you are not feeling up to par!  I remember Jenna's mom saying it was the red tape that holds everything up…so true. My oncologist advised that TIL is rough but it's been a long 3 years and I pray I can stamp the beast out.  As one doctor says…one day at a time.

I will keep you posted soon as I know what I am doing.  Val xx