Financial and Travel Resources for Cancer Fighters

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8/2/2010 7:34pm
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Replies: 11

I put together a list of resources that I found here on MPIP.  I posted it to my blog and wanted to share it with you.  I can't take credit for it, I just compiled all the information.  I hope you find it useful.

www.melanomasucks.blogspot.com

Hi Jill,

I'm happy you text....I believe Eric has started ipilimumab..am I correct?  I seem to recall he also is like me in that he has many growths on his leg...I have more than 100 on right leg..cutaneous. Have been told I am stage IV due to progression. Very possibly if temodar does not work soon, I will be going on the ipi compassionate trial.  Big question is how is Eric doing on this trial..has there been improvement to date?  Many thanks for any advice you can offer.  Val

Live Laugh Love
Nothing is worth more than this day!

Oops, I just read Eric's profile...doesn't look like he is on ipi...but any advice you can give me would be appreciated.  Val

Live Laugh Love
Nothing is worth more than this day!

Hi Val,

You are correct.  Eric isn't on Ipi right now.  He is doing a dendric cell vaccinne.  We think that it may not be working because he has a new tumor so they are going to reevaluate him next Tuesday.  Eric has over 100 sub-cutaneous and cutaneous tumors in his right leg.  We really haven't found anything that has worked for him yet.

He is actually at the doctor right now getting his Brain MRI results.  They just did it this morning.  We are a little worried because there have been some behavioral changes in him.

I wish I had some good advice for you, but we really haven't found anything that has helped him yet.  I will definitely let you know if we do.  Good luck to you.

Jill

Hi Jill

Maybe we can work on this together...I should be starting ipi within a few weeks and will keep you posted as to what happens on my right leg with over 100 tumors cutaneous...if you find something that works for Eric..let me know..I'll be willing to try anything to stop this monster from increasing...temodar appears not to be working.  Val

Live Laugh Love
Nothing is worth more than this day!

Val that would be great!  You still have our email address?  I would love to hear how things go and we can hopefully find something that will work for the both of you!

Yes, that is part of the list I have complied over the last two years helping people on this site as well as others off site tool.

Use it, and spread it across the internet all you want!

Michael

 

 

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

Hi Jill,

 

I hope the brain MRI comes back clear.

I also fear that I have brain mets because I am dizzy & having pain in my head.

You mentioned your husband is having "behaviour" changes. Please describe these changes. I am scheduled for full set of scans head to toe in September so I am trying to wait to alert my doctor of my head issues.

Thnaks for your reply.

Why are you waiting till September?  Call your Dr. if you are having pain and are dizzy. 

Wishing you clear scans

If you are experiencing pain and dizzyness I highly recommend you get into your doctor before September.  Things can change so quickly with Melanoma.  Eric's leg went from only have a couple of tumors to over a hundred tumors in a month during treatment.  Eric's Brain MRI was clean, thankfully.  He is having bouts of anger, sadness and rages along with memory issues.  Almost like someone who has dementia.  He was already taking Celexa but his doctor has prescribed him other medications that we are hoping will help. 

Please contact your doctor and if you don't mind, keep me in touch with how you are doing.  It's so important to be on top of new changes when you have Melanoma.  Good Luck to you.  Jill

Yes please, I second the notion to call your doc right away and ask for  brain MRI ASAP. My scans were still a few wks away so for 2 wks I ignored my pesky little headaches that kept coming & going,  then on a Sat nite 3am it hurts to open my eyes & look side to side. Monday morning call to doc...2hrs later Im having a STAT brain MRI...yep....3cm brain met to my Cereblum...surgery 4wks ago, 3 saps of SRS 2 wks ago...and here we are.....;We've got to catch brain mets fast......please call your doc. ASAP.

love,

Sharon in Reno

Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

Thank you everyone for caring about me and suggestions to go see my doc and not wait.