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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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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News

Don't Trust Apps to Spot Skin Cancer
 
 

IMNG Medical Media, 2013 Jan 16, S Worcester
 

 

Journal Scans: Research

Cutaneous Side-Effects Associated With Vemurafenib
in Melanoma

 
 

Ann Oncol, 2013 Feb 13, L Boussemart, et al

Low Recurrence Rate in SLNB-Negative Melanoma
 
 

JAMA Surgery, 2013 Jan 16, EL Jones, et al

BRAF Inhibition Enhances Melanoma Antigen Expression
 
 

Clin Cancer Res, 2013 Jan 10, DT Frederick, et al

No Survival Advantage With Tremelimumab in Metastatic Melanoma
 
 

J Clin Oncol, 2013 Jan 7, A Ribas, et al
EXPERT COMMENTARY
 

 

Journal Scans: Review

Targeting BRAF in Melanoma: Biological and Clinical Challenges
 
Free Journal Content

Crit Rev Oncol Hematol, 2013 Feb 15, M Mandala, et al

Venous Thromboembolic Events Associated With VEGFR TKIs
 
Free Journal Content

Crit Rev Oncol Hematol, 2013 Jan 12, G Sonpavde, et al

Resistance to BRAF-Targeted Therapy in Melanoma
 
 

Eur J Cancer, 2013 Jan 2, RJ Sullivan, et al
 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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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pds's picture
Replies 8
Last reply 3/5/2013 - 2:55pm
Replies by: Mandi0280, Ali, ncdaniel, Anonymous, Colleen66, Becky, Janner

Hi everyone!  I am 32 and just recently had my 6 mo full body check and had a "clean" check and this was also my 5 year mark from my first non-invasive Melanoma.  About a month later a lesion appeared on my ear and after pathology returned it showed it was another melanoma.  So I had surgery to remove the lesion and they also performed a sentinel node biopsy.  The path on the sx came back and showed clean margins on the Melanoma, but not very big.  Also, one of my lymph nodes came back positive.  I have another surgery lined up in about 1 1/2 weeks to go in and remove a larger section on the ear and to remove all the lymph nodes from that side of my neck.  I am due back to the oncologist's office later this week to discuss the staging of the cancer and future treatment.  I am guessing from what I have read on all the legit websites that they will stage it Stage III-a.  At my prior appt w/ the oncologist he briefly mentione Interferon treatment.  Just curious as to how all of you younger patients out there responded to it?  Side effects?  I am very active and healthy, so I am hoping that will be to some benefit.  I also have long, thick hair and the vain side of me is curious to how much of it I will lose??  Fertility?  Did anyone freeze eggs?  How long was the I.V. part of it?  Thanks!  I am sure I will have many questions in the future, but these will get me started =)

Thank you!

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joy_'s picture
Replies 17
Last reply 3/4/2013 - 4:29pm

Hi everyone.  First of all, I want to say that I am really grateful for the information that everyone shares here.  It has been very beneficial...  We found out a couple of weeks ago that mel has returned after a 2 1/2 year hiatus.  My husband has tumors on his lung, liver, adrenal gland, etc.  We are waiting for the BRAF test to come back, and in the meantime I am trying to figure out what options are out there.  After talking to his doctor, it sounds like that only choices available here are either a clinical trial of Vemurafenib followed by IPI (if BRAF pos) OR choose between Ipi and IL2.

We are good with the trial if his BRAF test comes back positive but trying to have our game on to know what to do if it isn't because IL2 sounds like a horrible choice for him.  Does anyone have any suggestions based on your experience or about other trials that are being done around the country?  Is there anything else I can be looking into?  It seems like you pretty much have to have a failed attempt with IL2 or Ipi to move on to something else?  I am trying to educate myself  so any feedback would be much appreciated.

Thank you.

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