MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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NatashaBishop's picture
Replies 1
Last reply 3/2/2013 - 12:51am
Replies by: Cielo

Hi Everyone,

Just an update on my Dad and some questions. He completed 5 days of CVT Wednesday for mel in his brain, lung, muscle and bone. He's handling it pretty well so far. He's been able to keep his food down for the most part, no headaches since starting the chemo, he still has blurryness in his right eye (due to the brain lesions), he is unsteady on his feet, and very forgetful (chemo brain?). He had a really rough morning today but I talked to him this afternoon and he sounded great and he was able to walk 3 blocks. He has 15 days off now and then we do a scan to see if the chemo is working (that'll be a nerve wracking day). I'm curious how chemo plays out during these 15 days. I know that it is attacking the cancer cells in his body and he'll probably have good days and bad. Any experience as to what to expect over the next 15 days? I'm mostly curious about his blood count and when that begins to see an impact. 

I'll be heading out from March 6th to 16th to take care of him while my Mom returns to Florida for work. My Dad is currently being treated in Houston at MD Anderson. So any heads up or advice would be much appreciated.

Thanks!

Natasha

We can do this!

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/1/2013 - 7:23pm
Replies by: Erinmay22, awillett1991

Given that Melanoma makes us total worry warts... a few weeks back I got a horrible rotten head cold.  I still have some lingering congestion.  During that time I did get migraines a few times (the visual distriburances... I have noticed that caffeine is my trigger for those).  But I've also noticed an increase in eye floaters.  Now a lot of this is probably due to the fact that I noticed they were there and not can't stop looking for them!  

I did see my opthamologist who said my eyes look great!  and I'll be in to see my doctor on Monday so I'll for sure bring it up!  

But curious - did anyone on PD1 have an increase in eye floaters?  or anyone worst case/thoughts - did you notice this happen and then find out there was a brain tumor?  

I'm sure it's 90% anxiety!  with dry eyes and everything else going on...  

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Janet Lee's picture
Replies 17
Last reply 3/3/2013 - 9:29pm

Please forgive me if I am being redundant in my posts. You have been helpful and I've learned a lot in a pretty short period of time. But things in our household are changing so rapidly and we are so scared, I need some help and reassurance about what we're doing and what else we should be doing.

My wonderful husband, Don, was diagnosed just 2 short months ago (1/17/13) with Stage IV Metastatic Melanoma. We thought he had a bad disk (back pain). No history of melanoma (couple of basal cell spots removed in earlier years). We were just getting ready to retire and spend a winter in Florida. Never found primary.

He had one asymptomatic lesion in his left frontal lobe; Cyberknife performed 2/8/13. Two pelvic masses and another lesion at the base of his spine, received 12 radiation treatments in attempt to alleviate pain (helped a little). Other tumors in muscle along his spine, at base of neck, adrenal gland, small nodules in lungs, and recently discovered one or two in stomach/esophogus.

His disease is pretty widespread. He's being treated at Dana Farber, who wanted him on Zelboraf. Insurance company denied it because he is BRAF V600R, not V600E. It is now in third appeal in Washington (he has a BC/BS Federal Plan). I AM LOOKING FOR ANY RESEARCH/SUCCESSFUL EXPERIENCE/KNOWLEDGE OF ZELBORAF'S EFFECTIVENESS ON V600R MUTATION THAT MIGHT HELP IN THIS APPEAL!

On 2/15/13, Don was given his first infusion of Yervoy. A few days later, it seems all hell broke lose. His right leg became almost paralyzed, his right arm extremely weak, and he was overcome by extreme exhaustion. He spent a week in Brigham & Women's Hospital. They felt he had tapered too quickly off the steroids, so they gave him high dose injections and he's now on 16mg a day. His red blood count was so low, they gave him two units of blood. This is when we found out that he has mets in his stomach/esophogus which are "seeping" blood. The brain met is now larger than it was a month ago and there is inflammation around it, so they are now suggesting surgery to remove the brain tumor.

I have so many questions. This is all so fast! Brain surgery is scheduled for Tuesday, March 5. Don is an otherwise healthy, robust man; 6-foot 1-inch, 200 pounds. I have to lift his right leg for him to get into/out of the car, up the stairs, etc. He can barely sign his name with his weakened right hand.

I need to help save this man's life, as he is MY life. I'm so confused about the treatments and the clinical trials. Some say no brain mets, others say brain mets allowed. What meds and trials should I be asking his melanoma oncologist about? I believe she knows what she's doing, but I know I have to be our own advocate!

Thanks for helping! I'm so scared.
Janet 

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tjndnd's picture
Replies 5
Last reply 3/8/2013 - 4:09pm
Replies by: tjndnd, lou2, Anonymous, POW

Hi,

Just wanted to share this since I've seen a lot of questions regarding the topic, and because of how much of a hassle it was to find insurance for my wife.

My wife and I are in our early 30's - so we weren't thinking too much about life insurance - until my wife's diagnosis.  She was diagnosed with spitzoid melanoma, no-ulcerated, 1.1mm, no mitotic rate, clarks level 4.  Her SNB came back negative.

After we got the SNB results, I called various life insurance company's - most of which told me that there was a "seasoning" period, or that the annual premiums would be $1500-1700. 

I finally called a "broker" type company - who found multiple carriers who would insure my wife.  One was a MAJOR company - highly rated - and she was quoted at 30 bucks a month for a 30 year term policy of $250,000.  I didn't believe this, and asked if melanoma was excluded.  She said no - there were no exclusions. 

Just got the policy yesterday, and it was indeed 33 and change a month.  I'm not here to "advertise" - but just letting you know with a little determination you can indeed find life insurance after a recent diagnosis.  It probably will obviously depend on how serious the invasion is however, and if it's spread the lymph nodes or not.

 

Thanks!

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Hi,

Just wanted to share this since I've seen a lot of questions regarding the topic, and because of how much of a hassle it was to find insurance for my wife.

My wife and I are in our early 30's - so we weren't thinking too much about life insurance - until my wife's diagnosis.  She was diagnosed with spitzoid melanoma, no-ulcerated, 1.1mm, no mitotic rate, clarks level 4.  Her SNB came back negative.

After we got the SNB results, I called various life insurance company's - most of which told me that there was a "seasoning" period, or that the annual premiums would be $1500-1700. 

I finally called a "broker" type company - who found multiple carriers who would insure my wife.  One was a MAJOR company - highly rated - and she was quoted at 30 bucks a month for a 30 year term policy of $250,000.  I didn't believe this, and asked if melanoma was excluded.  She said no - there were no exclusions. 

Just got the policy yesterday, and it was indeed 33 and change a month.  I'm not here to "advertise" - but just letting you know with a little determination you can indeed find life insurance after a recent diagnosis.  It probably will obviously depend on how serious the invasion is however, and if it's spread the lymph nodes or not.

 

Thanks!

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akkcak's picture
Replies 6
Last reply 3/2/2013 - 8:41pm

Just found out i have a 4mm spot in my brain that is near the thalamus. Was told it is too deep to biopsy. I don't see dr until next week. Am i looking at srs? What about other treatments in conjunction with it? Can't do yervoy. Other options?

Thanks!
Amy

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Lauri England's picture
Replies 9
Last reply 3/1/2013 - 8:13am

Doctors office called today and said there were no cancer cells found in the bone.  They are not sure what was there but not cancer.  What a relief.  Now to continue on with life.  The rib biopsy is very painful and I guess I will be healing for a while.  Just glad it over and all clear.  Still NED.. Yahhh

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Cielo's picture
Replies 5
Last reply 3/1/2013 - 12:44pm
Replies by: Tina D, TSchulz, Cielo, aldakota22, Anonymous

CT Scans and MRI coming up this Sunday, then see our main Onc Monday.  My husband, Scott, has been on Zel for ten months now.  Hoping and praying the Z is still working. Please send us prayers and positive energies.  Thank you.

Cielo

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Tim--MRF's picture
Replies 8
Last reply 3/3/2013 - 12:41am

I have learned that we are having some issues with this site.   Some posts take a long time to show up, resulting in duplicate submissions.  And Chat has been a challenge.

I am sorry to hear this is happening.  Chat, in particular, holds a dear place in my heart.  When I first started with MRF I spent a fair amount of time in late night chat sessions and learned a great deal about melanoma and, more importantly, the melanoma community.

I want to assure you that we will get this fixed.  I am pushing the IT person who works on these issues to resolve it quickly.  I had a note an hour or so ago that a fix had been implemented.  Shortly after that I tried to open Chat from three different browsers and none of them worked--clearly a bad sign.

Please hang with us a bit longer and hopefully we can get this resolved soon.  Again, I apologize for this problem.

Tim--MRF

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awillett1991's picture
Replies 3
Last reply 2/28/2013 - 3:45pm
Replies by: awillett1991, POW

I'm researching Genentech trial this for a friend. It's a small phase 1 trial, side effects sound NASTY because of the MMAE, from what I can understand. Have any of you gurus out there heard anything or have any thoughts I'd really appreciate it.. This is his only option left because of the issues he has.

Thanks!

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Bunmom's picture
Replies 18
Last reply 3/2/2013 - 9:42pm

The melanoma oncologist I saw yesterday recommends complete axillary dissection for my stage 3a, as I had micromets of 0.1mm to one SLN.  The surgeon who did the WLE and SNB told me before I saw the oncologist that he wouldn't recommend it because of lifetime risk of lymphedema, infection, and inability to fully utilize my (dominant) arm. 

I looked online at some of these complications and I'm freaking out. Now I don't want the axillary dissection! 

I asked about ultrasound monitoring, but was told that by the time the node swells enough to see on ultrasound it has probably spread to other parts in the body. 

I see the chances of developing lymphedema range from 15-50%, depending on which site you read. So has anyone NOT developed this after a dissection? If so, what do you think the reason is? 

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POW's picture
Replies 3
Last reply 3/1/2013 - 8:18pm
Replies by: POW, aldakota22, DeniseK

Has anybody heard from DeniseK lately? What were the results of her PET scans? Has her nausea subsided?

Hey, Denise, if you're out there, give us an update OK?

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dolphin5's picture
Replies 2
Last reply 3/3/2013 - 11:54pm
Replies by: democat, awillett1991

Has anyone found relief from the constant itching besides the Aveeno creme and hydroxyzine 30mg.  She was up most of the night and found little relief.  I know it takes time for this to pass but any little trick or suggestion is appreciated. 

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eric w's picture
Replies 28
Last reply 12/28/2013 - 3:19pm
Replies by: Genny, Ali, steelergirl, eric w, POW, gabsound, Anonymous, Gene_S, Janner

Hi all,

 

My wife was diagnosed with melanoma on her arm 2 years ago. We live in Las Vegas and went to UCLA for the removal of the mole. I forget the number it was but it was ulcerated. It was removed and lymph nodes were clean. she has been getting pet/ct scans over the last two years. On the scans some subcentimeter nodules were noted without growth. This last scan 5 of the nodules hat grown but still subcentimeter....we are going to UCLA next friday and are waiting for mutation results...I have just started to read about treatments but wanted some input...first i need another facility to take my wife for second opinion...luckily we have the means to go where we need....again i live in Las Vegas....

 

my second is what type of treatment should i be expecting to hear....it seems that Yervoy is a good option or IL-2 i think it was....all the rest of her scans have been clean so far....also should we be looking at the PD-1 as well??? sorry for so many questions...scarried out of my mind....

 

by the way my wife is a beautiful healthy 42 years old.....thanks

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dian in spokane's picture
Replies 7
Last reply 3/2/2013 - 12:27am

 I posted last night when I got fiinished with my appt, but I see now that it never appeared on the board! I saw Dr. Thompson at SCCA yesterday and it went exactly as planned.

It was great to be able to pick his brain about all the options out there, especially as I need a back up plan, but he agreed with Dr. Kaya that IL 2 is a good option for me and that I am good candidate for it.

As usual at any place that has a big clinical trial program, he offered me a trial. This one is a combo of IL 21 and Ippi. (I had looked at one with IL 21 and anti pd 1, but it's full and wil a waiting list) The trial has one slot open, but it is just not the trial for me. So I will continue to look at possible anti pd 1 trials as a second course in case I fail at the IL 2

But I'll likely be starting IL 2 on March 18th at home in Spokane.

Keep your fingers crossed for me, and I'll keep you posted on how it all goes.

Dian in spokane

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