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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Amanda's picture
Replies 2
Last reply 3/2/2013 - 10:38am
Replies by: Amanda, POW

My boyfriend Randy got his second infusion of the merk-3475 pd-1 drug at 10mg/kg with previous use of Yervoy at UCLA with Dr. Ribas monday, and also had a visit with his primary oncologist, Dr. T. wednesday who was very happy with him at this time.  Dr.T measured his palpable mets and said they were stabalized.  He also said that it was the best he has seen him since he's become his Dr. (when randy was discharged from the hospital after his bowel surgery, we switched from his previous oncologist to Dr. T who knows more about melanoma. Randy was in a very weak state, and had lost a lot of weight when we met with Dr. T for the first time.  Randys tumors were growing quite rapidly for the two months before he started pd-1, including a met under his jaw bone that is about an inch long (forgot to ask the measurements) that devolped to that size in two months.  That met was the fastest growing met he has had yet i believe. 

I had been trying to get randy into the Pd-1 trial at UCLA for a month or more, waiting for the slots to open for previous ipi use.  All the while Dr. T saying we should start Dacarbazine since his mets were growing (he's braf-).  I knew from this board, and other research that Anti-Pd1 was doing so well in patient trials, i had to get randy into one.  We kept telling the Dr. we were trying to get into this trial, and luckily enough got accepted to one at UCLA.  Dr. T said randy had a good nurse (me).  ha, made me feel good.  Sorry to go on, but so far his visible mets have stabalized, pretty much right after the first dose we noticed them stop growing.  He has gained some weight, appetite is up, energy is definately up since he started, i can really tell the difference.  Plus he says he feels 'great'.  so far only some mild joint and muscle pains. 

Does anyone know how long ipi stays in the body?  After 7 months could ipi still be in there, and be working with the pd-1?

!-Amanda-!
(g/f of patient Randy)

"Give thanks in all circumstances"

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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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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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dian in spokane's picture
Replies 21
Last reply 3/1/2013 - 11:06pm

Hi,

I'm not sure I need to give my history, but I will, briefly, just for s*it and giggles. I've been on this board, on and off, since 2003

I was diagnosed with my 1st melanoma 30 yrs ago this month, a shallow spreading surface melanoma. Followed by another and an in situ the same year, 1983.

In the early 2000's I develeoped a hard lump at the site of my previous in situ scar, which raised the scar itself up, and for a year and a half my derm told me it was a keiloid. But eventually I insisted he remove it, and I was diagnosed with stage IIIB melanoma, There were some satelitte lesions, in transit, but no lymph node basin involvement, so no LND.

I did interferon for 10 months, forced off by side effects involving my lungs.

I was NED  then from that point to late 2008, when I developed a couple of subcutaneous tumors in my left leg. The first was removed, the second, removed with tissue collection and sent to HOAG in california, where I entered a vaccine trial (MACVAC) I finished that in late 2010, but had a small tumor growing in my lung already..which did not light up the PET scan until my November 2012 PET (we traced it back on the scans and had been monitoring it all along, but it was not PET reactive)

Because of my history of single nodules and slow progression, we opted for SBRT, high dose radiation therapy, to remove that small tumor, and I did that in December. If you are interested in that, I'm sure the description of my radiation experience is still on the board and searchable through my name.

That's about the most concise history I've ever given, and it brings us up to date.

I had PET/CT a week ago and got my results on tuesday. That radiation seem to have worked on that one spot, but another has arisen in my right lung, and an equivocable one on my left lung.

I'm still feeling fine but have decided I need systemic treatment. I've been doing a lot of research....as much as I could get done between my tuesday appt with the radiation oncologist, and my thursday appt with my medical oncologist. I've been looking at trials in my own region, and also talking to some people about IL 2.

My plan was to, first, see what my own oncologist had to offer and discuss. Since we are not at a big melanoma center, and he has no trials in the game, I always feel like he has my best interest at heart, and his past actions have shown me that too. So I always like to hear what he has to say before I start throwing stuff out there. But, because we aren't really at a Melanoma center, my other plan was to see a specialist for a consult before I finish the whole decision making process. Just in case there are better ideas about treatment than My doctor and I can come up with here in spokane.

So I saw him yesterday and the first thing he did was ask me to confirm his thoughts that I had never had IL 2. I was kind of surprised, since I was kind of leaning toward IL 2 myself. He thinks it should be my first line of defense instead of my  last. He gave me good reasons. His chief reason is close to mine, that there's a chance, however slim, of durable remission. Also, though a tough treatment, it would be done soon, could be done here in town, leave me open for other treatments, even perhaps boost the efficiency of future treatments. Now long term side effects.

Anyway..before we got that far into the discussion, he told me that he wanted me to go to SCCA for a consultation at the melanoma clinic, but he thinks they will agree that I should try IL 2 first (!) But we are both open to the possibility that there might be something better that they might suggest.

Frankly, having done trials far from my own town, I know that it's not something I'm dying to do...though I could. I rather not bring huge debt on my family either.

I'm not making any decisions till I get all my info in, but I know there are plenty of folks on this board who have done IL 2...Yesterday I spoke to someone who had not even heard IL 2 mentioned by her doctor. So maybe it's a time we had an IL 2 discussion on this board.

I'm thinking now might be the TIME for me to do IL2

Dian

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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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These are my the updated pictures, after scraping off it and a better quality camera. The last GP who saw it said he think it's angioma but then gave me a date with a derm this monday. When I see the pictures of angioma or hemangioma, (this looks close to hemangioma) they look raised from the skin. Mine is not raised, I have been pressing it to see if it has any growth underneath, I did blind test by feeling and seeing if it is different from the surrounding skin. I can't find anything.

 

This is the follow up from the other thread, since that thread got lost.

 

It is blood red without any multiple colors, but after reading about some great suggestions and knowledge I gained here, I am pushing for the excision. I can't help over think and fear that this derm is also going to blow me off saying she doesn't have time. Most derm are busy with botox in Canada, where the money is. I hope this works out this time.

 

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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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chalknpens's picture
Replies 4
Last reply 3/1/2013 - 12:50pm

Hi - I'm doing fine myself, having had no new melanoma sites discovered at my three month and six month follow up visits. But I have a relative who has had melanoma for several years, beginniing about a decade ago. She now has lymphoma. And in our family, we have what is called a cancer gene, BRCA 2. That gene is linked to many types of cancer, and it raises the likelihood of developing cancer tremendously.

Is anyone else familiar with this gene? And have other people with melanoma later been diagnosed with lymphoma, and are the two cancers related? I've alerted my doctor to the family link to BRCA 2, and we are looking into genetic testing.

I am not perfect, but I am enough.

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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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mclaus23's picture
Replies 3
Last reply 3/1/2013 - 12:41pm
Replies by: Tina D, mclaus23, susanr

Hi All,

Has anyone had or known of anyone having an adrenal tumor biopsied that is relatively hard to get to?
All posts will help!!

Thanks!
Maggie

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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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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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Carole K's picture
Replies 7
Last reply 2/28/2013 - 9:09pm

I am going to try to get into chat again tonight.  I was unsuccessful last night as were many others.  I will e mail MRF to see if this can be taken care of.  Hope to see all of you there. Love and Light

Carole

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mbaelaporte's picture
Replies 8
Last reply 2/28/2013 - 6:30pm
Replies by: mbaelaporte, lou2, Anonymous, ncdaniel, Carole K, jmmm, awillett1991

I am a prime candidate for a trial of anti PD1 at SCCA but an aspect of protocol is that my insurance company is notified & requested that they participate.

My company refuses to participate in trials / I'm wondering if anyone is aware of any funding available from organizations that might partner w / my self pay route?  I've worked w / Chronic Disease Fund before but they also contribute only when using FDA approved drugs.  I notice Healthwell Foundation talks of metastatic melanoma assistance only for medicare patients.

Please someone have some good info .  Many thanks,  john

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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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