Update

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1/13/2014 9:36pm
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Replies: 10

Finished yervoy Dec 9... Scan on December 20th showed no progression and doc said she wouldn't even be concerned about lung nodule as it was a shadow and the obvious prior knowledge of tumor. Felt it was very encouraging news. So had a nice Christmas break with kids and went into hospital Jan 6 to start HD IL-2. Did 11 bags... Couldn't get last one in Friday...couldn't get urine output. 

Anyway, feeling a bit better but wow feel like I've been run over by train. 27lbs of fluid retention... Scary. My dad took pic on day 1 and last day...wow. Hardest thing is not being able to sleep well. If I could I think I'd feel 1000% better. Cold feet, get chills... General flu like feeling. Not looking forward to next week in terms if dealing with side effects but looking forward to getting on with it. I wish complete response rate was better for patients.... This drug is high price to pay.

 

Josh

Let's work for better treatments....for a cure!!!!

BrianP - (1/13/2014 - 10:40pm)

Josh,

Great to hear from you!  That first scan sounds very encouraging.  That does sound like a brutal treatment but also sounds so promising.  Congrats on getting 11 bags in.  That is an amazing accomplishment.  Anxiously awaiting your future updates and in particular your next scans.  Best of luck.

Brian

Momrn5 - (1/14/2014 - 12:36am)

Hi Josh, great news about the scans!   Good thoughts and prayers being sent to you as you continue through this IL2 treatment.  I hope this finds you diuresing.  Hang tough. 

Mat - (1/14/2014 - 4:40am)

Josh, thanks for the update.  I was wondering how you were doing.  This sounds like a great trial.  Get some rest and then go for that complete and durable response!

aldakota22 - (1/14/2014 - 5:55am)

All in all a very good update .Prayers sent your way that you are one of the complete responders.Sure sounds like a tough treatment but this melanoma is one tough nut to crack.   aldakota22

ecc26 - (1/14/2014 - 8:56am)

Yes, IL-2 is rough (I remember it well), and for me it was always a little harder that second week of each cycle. 27 lb is a lot of fluid (I usually gained about 15), but now that you aren't recieving infusions (until next week) it will come off remarkably quickly and my guess is in another day or 2 you'll be feeling pretty much normal. I usually felt tired, etc until about Wednesday, then I'd feel pretty normal until the next round. Don't worry too much about how many doses you got, or in general what side effects you get- like with other immunotherapies, it really doesn't matter. What matters is hopefully getting your immune system going. If it takes one dose or 15 doesn't matter. I typically had 9, the person down the hall could only tolerate 5-6, you tolerated 11. IL-2 wasn't enough for me (killed all the tumors I had at the time, but new ones sprouted really fast after I finished), but the person who only got 5-6 is doing great, so don't get so focused on the number of doses or the side effects. It's enough to just focus on getting through each day of this treatment. When I was in the pre-screening process for IL-2 the nurse who councelled me said something along the lines of "Most people have some idea how hard chemo is on people- this is so much worse." I've never had chemo, but I suspect she's right. 

I hope you get that coveted long term response we all hope for. Best of luck to you!

PS: don't be afraid to ask for medications to help with side effects (fevers, nausea, etc)

kpcollins31 - (1/14/2014 - 9:47am)

Good to hear the update - sounds like you are through the worst of it. Hopefully the fluid retention will disappear quickly and you can start getting some much-deserved rest.

Kevin

 

POW - (1/14/2014 - 10:30am)

Josh, I think you are smart and gutsy! You could just be satisfied with your excellent ipi results. But no, you want to go for the brass ring, the whole magilla-- a complete cure. Not just for yourself, but for your wife and kids. Good for you!

Just remember that there are no extra points for suffering any side effects needlessly. If your feet are cold, but some battery powered heated socks. If you get chills, buy an electric blanket or at least a heating pad of two. Take something to reduce your fevers. In essence, baby yourself however you can while going through these treatments. 

And remember, however bad you are feeling, your melanoma cells are feeling even worse! Take THAT you damn buggers!!

JerryfromFauq - (1/15/2014 - 2:06pm)

Great report.  (told you it is rough, but do-able!  I know people that got less bags in the first two weeks and then had to stop, than you and I got the first week and have been NED for YEARS now.  Jjimmy B did research that showed how after the IPI didn' t get a total job done, he went on to IL-2 and achieved a complete response that has lasted years (Likely a CURE for JimmyB!).  I gained about 30 lbs the first week.  lost it in 3 days.  usually gained about 15-2o in the remaing 5 weeks of IL-2 treatments.

I'm me, not a statistic. Praying to not be one for years yet.

JoshF - (1/15/2014 - 10:55pm)

You were right on with everything you told me. Very doable....I'm looking forward to getting on with it. Since you turned me on to Jimmy B's blog I've been scouring it. His research from my minimalist understanding said he believes there is value in combo of ipi followed by IL-2... Praying this is my magic bullett!! Stay well you old jar head... I'll check in after next week!!

Semper Fi!

Josh

Let's work for better treatments....for a cure!!!!

JoshF - (1/15/2014 - 10:55pm)

You were right on with everything you told me. Very doable....I'm looking forward to getting on with it. Since you turned me on to Jimmy B's blog I've been scouring it. His research from my minimalist understanding said he believes there is value in combo of ipi followed by IL-2... Praying this is my magic bullett!! Stay well you old jar head... I'll check in after next week!!

Semper Fi!

Josh

Let's work for better treatments....for a cure!!!!