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November 14, 2012 at 8:46 pm #20771
Hey Folks –
I haven’t posted anything lately. Tomorrow it will have been 6 weeks since having about 8″ of my small intestine removed. They took our a rather large tumor.
I had my 3rd dose of Ipi on Nov 6th. So far no major issues. I’ve been itchy the whole time all over and my skin seems to keep breaking out (if that makes much sense?). Was feeling some eye pressure (but think I got a sinus infection from going home to cold Minnesota and then coming back to New Jersey to spend a few days without heat due to Hurricane Sandy). My doctor wasn’t too concerned about this at all.
Last dose will be Nov 27th. Then we’ll scan some time after that. Depending on how things look we will then discuss next steps (nothing if clear? Zelboraf again? anti-pd1 trial at sloan?). Before surgery my scans showed the small intestine spot and swollen lymph nodes near there. 1 lymph node was removed and positive for melanoma.
Hopefully I’ll get some sort of response to Ipi? Nothing major yet. Some ‘stomach’ issues – but I did just have a large portion of my small intestine cut out so I figure that’s normal as I add things back in to my diet.
Hope everyone is doing well.
ErinNovember 15, 2012 at 3:19 am #57565Shirley ZParticipant
Its good to hear from you. I have been thinking about you.
Happy to hear you have had no major issues with the Ipi. The itchness alone must drive you crazy though.
I hope the sinus infection gets better soon. You certainly do not need that on top of everything else you are going through.
Hurricane Sandy was awful. I hope you did not sustain any damage. It was unbelieveable how widespread the storm was. We live in NE OH and there were trees down everywhere. We had over 7 inches of rain, but all we had to do was look at what the east coast was going through and it made us realize how fortunate we were.
Good Luck with your last dose. I will be praying that the scans go well.
Hope you are able to enjoy a nice Thanksgiving Erin. Big hugs to you. Keep up the fight.
Shirley ZNovember 15, 2012 at 9:30 pm #57566
Hi Shirley –
Thanks so much for your note! Yes no major issues with ipi. I keep ‘looking’ for signs it’s doing something! But then again, let’s hope surgery took care of everything, right? The itchiness is MUCH better than my Z rash… but still annoying!
The sinus thing is getting better. It happen to me last time I had surgery too. Perhaps trying to push myself too much? Plus the change in weather doesn’t help.
Hurricane was awful. And yes it was a massive storm! Wow 7 “ of rain is a lot! Will keep you guys posted on how the last dose goes and scans! Hope you have a fabulous Thanksgiving!
ErinNovember 15, 2012 at 9:42 pm #57567Catherine PooleKeymaster
Good to hear from you Erin, you are such a trooper! I know where you live was devastated worse than SE PA, but we have close to 10 inches of rain and high winds and power out. But we lost all of our trees in the previous huge storms so not much loss this time.
I hope your itching subsides, these therapies are so weird sometimes and wishing you a joyful Thanksgiving too.November 16, 2012 at 3:28 pm #57568
Thanks guys! yes lots of rain all over the place! I was fortunate that I was in Minnesota when it hit – so I didn’t really experience it much. And I’m very blessed that all I lost was power for a week. I live right on the water off a canal that runs off the Hudson! So I am AMAZED I didn’t have any flooding on my first floor apartment. Maybe it helped that our apartment building doesn’t have a basement?
The itching is tolerable… And there is no visible rash – just itchy skin! and I seem to keep breaking out on my skin… Funny what these drugs do to us!
Have a fabulous weekend!
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