Prd10

Hi Vince,

I also recently started IPI/Nivo on November 27.  I had no wash out period from mektov/braftov.  My back pain was hurting the next day but was manageable but within a few days I was in the hospital from the pain and I couldn't stop vomiting as well.  It seemed impossible that it could grow that fast but I went back on the Taf/Mek and I will also continue on the ipi/nivo.  We have no idea how they will work together but I'm kind of running out of options and time.  The Taf/Mek has worked well for me with the exception of the lepto disease so hopefully the IPI/Nivo will manage that. Just a thought.  

Caitlin 

Hi Mat, 

i responded on Celeste's other post before I saw this post so a bit of a double post.  I have LMD and I'm currently on BRAFTOV/MEKTOV.  I just returned home to Chicago from MD Anderson after attempting the intrathecal trial.  They've had very few people attempt it .  I know they have had success with at least one person.  I'm not sure yet if I got some benefit or not.  It was much more difficult being away from home than I thought but I felt incredible lucky to try it.  

MD Anderson offered me IL-2.  Dr.  Luke at U of C offered me to finish the IPI/NIVO I started before I left and some radiation to my spine tumors.  Thank goodness for options.  They both agreed I needed a month or the braf/mek to get stronger.  I'm tolerating it well and will switch to IPI/Nivo soon.  I've done nivo twice without good results but maybe the combo will prove better.  

I hope your surgery went well.  I'll be following what you plan on doing since I understand we just entered a new world of melanoma.

Caitlin 

Hi Vince,

ive been on it about a week with no side effects.  I had done Taf/Mel for a year and struggled w the fevers but have had no problems on this.  I've got a small rash on the back of my neck which is no big deal.  The amount of pills is crazy.  Just getting them down makes me nauseous.  I'm just using this as a bridge to finish ipi/Nivo so I'm hoping I can get a good month out of them bc I have to deal with leptomeningeal disease. My dr did say it was being tolerated well by his patients.  Take care -Caitlin 

Hi Vince,

I had the rash and paused treatment for a few days to let it clear and then resumed again.  It took a few times to stop and start and I haven't had it since.  My Dr recommended Eucerin cream and it helped a little but a 48 hour break usually stopped it enough to be able to restart.  Hope it clears soon!

Hi,

I think you've been given some really good advice, you will find that this board is full of amazing people!  Regarding telling your 8 year old I would probably tell her pretty soon.  My son is 7, although I've had melanoma since he was a baby, he always knows when something is going on even at a very young age.  I completely agree that it's much scarier for them to know something is going on but not know what. We've found books to be good resources for our son.  There's a book called my mom has cancer I'm sure there's one for dads too.  Also, I would let the school know ASAP.  I struggled with telling them but they have been an incredible help to our family.  My son always had a hard time settling in at school on the days when I had treatment and they were able to give him a little bit of extra love.  The school social worker will also play a board game with him or read a book about cancer with him just to get him to talk and check in with him.  

Take care

Hi Jennifer,

Sorry you are dealing with this.  A few random thoughts.  I wouldn't assume that surgical removal would be their first line recommendation.  Although surgery is definitely beneficial and used for stage 4 patients my oncologist prefers systemic treatment first. With that said I've had a liver resection (after being held stable with keytruda for months) and it's not nearly as bad as it sounds.  Has he tried Braf meds? 

Also, I would recommend getting another opinion at U of C.  I liked northwestern but a second opinion is always a good idea.  I know Dr. Luke has a trial where he's injecting into the tumor and giving nivo in combo.  I've had a liver tumor off and on for over two years and he's always been able to give me options but fortunately I've been stable on Taf/mek for about a year.  

You will be in my thoughts.

Caitlin

Hi Jennifer,

Sorry you are dealing with this.  A few random thoughts.  I wouldn't assume that surgical removal would be their first line recommendation.  Although surgery is definitely beneficial and used for stage 4 patients my oncologist prefers systemic treatment first. With that said I've had a liver resection (after being held stable with keytruda for months) and it's not nearly as bad as it sounds.  Has he tried Braf meds? 

Also, I would recommend getting another opinion at U of C.  I liked northwestern but a second opinion is always a good idea.  I know Dr. Luke has a trial where he's injecting into the tumor and giving nivo in combo.  I've had a liver tumor off and on for over two years and he's always been able to give me options but fortunately I've been stable on Taf/mek for about a year.  

You will be in my thoughts.

Caitlin

Sorry you are dealing with this.  Where is your wife being treated?  To me the most important thing at this point would be to get in front of the best of the best melanoma oncologists.  Where you are located may help us give recommendations but certainly Sloan Kettering in NY and MD Anderson in Houston are two that come to mind, though there are others.  Is she on any treatment currently?  Do you know if her tumors have been tested for mutations?  

There are others that are more knowledgeable that will chime in but if you have more information it would be helpful.

Don't give up hope with this ever.  There's lots of us that have survived tumors just about everywhere.  Keep in mind that what you are reading is outdated.  Though I do think getting good care and quickly is very important 

Hi Jennifer,

I don't have tips, but I will also confess that I couldn't stand lovenox and it just did me in.  I had a blood clot in my neck (this was after a big treatment failure and a hospitalization) and was prescribed lovenox indefinitely.  I would occasionally "forget" a dose bc I just couldn't even find room on my stomach.  Eventually at my pestering my oncologist agreed that bc my cancer is mostly under control that I could probably safely go off but of course his standard Dr recommendation would be to continue. I think I gave myself about 2-3 more shots after that and called it quits.  I like being able to confess here bc my family just freaked out at me, ya know the whole guilt trip, but for real I was over it.  I hope everything goes well this week!  Thinking of you! 

Hi,

Sorry you are dealing with this.  I had to respond bc I've done interferon and keytruda and I didn't believe my oncologist when he told me keytruda was really tolerable.  I think it's very true that everyone responds differently and certainly people have serious side effects, but it is not in any way like interferon where a few hours after infusion you feel awful.  I was tired the day of and a little bit the day after.  My son was 5 when I took keytruda and I was able to care for him no problem, although 2 year olds are more exhausting!  I'm on my 4th treatment since becoming stage 4 and none of them have been even remotely as difficult as interferon.  I know when I started Taf/mek someone on here recommended lots and lots of water and some excercise and I actually think that's really good advice for keytruda too.  Good luck

Caitlin 

Hi – 

Sorry you have found yourself in this situation.  A few things I wanted to share.  

– I completely sympathize with a right arm primary.  Sucks.  Being right arm dominant makes it very difficult to differentiate pains. 

– I had a lymph node recurrence after original diagnosis and I would describe it as arm tightness.  I didn't think it was painful but my upper arm to elbow were tight.  The lymph node was much deeper than I expected and my under arm felt like a rubber band.  Doesn't sound like what you are describing.

– I have also had a liver tumor that caused intense right arm pain.  The article you link, she also had liver involvement but wasn't being monitored.  Very scary.  For me, it was the type of pain that required heavy pain killers for any comfort.  Doesn't sound like what you are describing.  

I get sore from lifting weights and working out and everyday life.  My rule of thumb is if I can ice or heat it and it responds than it's probably muscular.  

It's hard to know what kind of follow up you are receiving and what your risk is without more information on your original primary.  That info would be helpful.  Hope the pain goes away 

Hi Mat, 

i didn't read all your previous posts sorry.  I did do the intrathecal trial for LMD though.  I was only able to tolerate one injection but we think based on symptons that it's done some good.  If you have questions feel free to fire away

Caitlin 

That looks like a blood blister to me but of course have it checked out.  A few things.  Melanoma on the finger pad is incredibly rare and its own subtype (acral lentingenous) and unrelated to your previous melanoma.  Also, just so you are prepared, there's no easy way to cut on the finger.  I hope they can give you some answers tomorrow. Hoping for the best.