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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JoshF's picture
Replies 1
Last reply 4/12/2013 - 2:11pm
Replies by: hbecker

Hi All-

Been holding out on this questions but anxiety is getting to me. Just a brief recap about my history so you understand where I'm coming from.

 

April 2011- bump in cheek removed. Path says metastatic melanoma...no leison found anywhere. Find specialist (mel)...thinks maybe primary dermal. Pet scan...negative, re-excision found 5.7mm melanoma in circrumference...depth not measured due to no epidermal component, SNLB negative.

2011-Current. Regular skin exams, eye exams, 1 mucosal exam. CT scans of chest, neck, pelvis abdomen every 3 months...all negative

So last scan in Feb was good but not long after I notice the tinest of bumps towards the roof of my mouth. Figured if was burn scrape etc... Well at 6 weeks now. I had dentist appt about 3 weeks ago and mentioned to him. He did xray and exam. Couldn't really see anything and x ray wasn't concerning though he said xray wouldnt be good to really diagnosis malignacy. He said thought it might be trauma and damage to gland which creates a tiny cyst called a mucceloe (sp?). This thing gets to size of a pin head...they type that has tiny ball on top (maybe not even that big), then it goes down basically to nothing. Actually feels like little piece of skin hanging...like when you burn your mouth eating. Anyway...he saw nothing of concern but given my history he said to see oral surgeon. I did that earlier this week. He said he can see the slight redness (was inflammed from brushing teeth) which was good...but guy was a quack...sais he would take it out then asked me if I wanted to be put to sleep for procedure....really. This thing isn't huge...just scares me and he scared me with that question. So I looked him up and he is on probation for anesthetic related issues and a guy died in his chair. Thank you MRF and all of you have educated me in being diligent about my care. So I'm going next week to see a different oral surgeon. I'm nervous....keep thinking about oral/mucosal melanoma given they never found a primary. Anyone out there have any insight or knowledge, experience with this? Really hoping it's nothing...I'm right at 2 year point and my oncologists feel I'm in good spot but I know this can come back anytime...anywhere....though its typically in first 2 years....which I am at. Hoping someone can respond.

 

Josh

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

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/31/2013 - 12:42pm
Replies by: Nonna Sharpe, LynnLuc, Anonymous, melissa ann

I read somewhere that a few patients in the BMS PD1 trial got chicken pox/shingles. Has anyone heard about this???

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Replies by: parkmk80, Anonymous, Tina D, Janner

I had a dysplastic nevus (mild) removed (shave) and there is now this bubble that looks a whole lot like an amelanotic melanoma or a morpheafor BCC.  I keep asking my derm if it's suspicious and he says it's an overgrown scar.  It itches all the time and I continue to ask him about it because it keeps itching and looks awful compared to the other biopsies I had.  I have had atleast 20 and my question is:  Is it possible to grow a skin cancer from an atypical shave  biopsy.  Should I get a 2nd opinion?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/13/2013 - 2:47pm
Replies by: washoegal, mark1101, Anonymous

Articles from journal.  Puzzled that they are describing interferon in this way.  Don't I understand that interferon is not a great success in melanoma? Perhaps I got this wrong?

___________________________________________________________________________________________________________________

 

Interferons and Their Antitumor Properties

Leonidas C. Platanias
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
143-144.
http://online.liebertpub.com/doi/abs/10.1089/jir.2013.0019?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
Biological Rationale and Clinical Use of Interferon in the Classical
BCR-ABL-Negative Myeloproliferative Neoplasms

Brady L. Stein and Ramon V. Tiu
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
145-153.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0120?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
Immunomodulatory Effects of Interferons in Malignancies

Joseph Bekisz, Yuki Sato, Chase Johnson, Syed R. Husain, Raj K. Puri,
and Kathryn C. Zoon
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
154-161.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0167?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
Interferons as Inducers of Apoptosis in Malignant Cells

Kevin P. Kotredes and Ana M. Gamero
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
162-170.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0110?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
Interferon-γ-Induced Necrosis: An Antitumor Biotherapeutic Perspective

Siddharth Balachandran and Gregory P. Adams
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
171-180.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0087?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
STAT Activation in Malignancies: Roles in Tumor Progression and in the
Generation of Antineoplastic Effects of IFNs

Ben X. Wang, Leonidas C. Platanias, and Eleanor N. Fish
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
181-188.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0154?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
Regulation of snoRNAs in Cancer: Close Encounters with Interferon

Shreeram C. Nallar and Dhananjaya V. Kalvakolanu
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
189-198.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0106?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
A Death-Promoting Role for ISG54/IFIT2

Nancy C. Reich
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
199-205.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0159?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
The Schlafen Family of Proteins and Their Regulation by Interferons

Evangelos Mavrommatis, Eleanor N. Fish, and Leonidas C. Platanias
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
206-210.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0133?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

------------------------------------------------------------------------
Hope and Fear for Interferon: The Receptor-Centric Outlook on the
Future of Interferon Therapy

Serge Y. Fuchs
Journal of Interferon & Cytokine Research, Vol. 33, No. 4, April 2013:
211-225.
http://online.liebertpub.com/doi/abs/10.1089/jir.2012.0117?ai=sk&ui=1i85m&af=T#utm_source=ETOC&utm_medium=email&utm_campaign=jir

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/14/2013 - 11:21pm
Replies by: Anonymous, Lori C, john partrick michael murphy

I know, I know. . .I am just curious if anyone has had any experience at all with this cancer center.  I have done my share of googling.  I know many say it is "quackery" but, truthfully so much of what they use makes sense.  After having an $18,000 pet/mri, the $20,000 cost for an 18 day stay for two including all travel, room and board AND treatment is a BARGAIN!

 

We do not care about FDA approval and feel there are so many other things that play into whether that happens or not.  Not having to follow US laws gives them access to so many more options.

 

The main three treatment tools are B17/laetril, ozone therapy and high dose intravenous vitamin C.  Could these thing possibly hurt?  I don't think so.  And if they can help, why not try?  We are looking for a stage 3C patient, currently NED, so needing adjuvant therapy to stay that way for a few more decades.

 

Thoughts?  I'll try to add a link.  www.oasisofhope.com

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/11/2013 - 9:42pm
Replies by: Charlie S

I know, I know. . .I am just curious if anyone has had any experience at all with this cancer center.  I have done my share of googling.  I know many say it is "quackery" but, truthfully so much of what they use makes sense.  After having an $18,000 pet/mri, the $20,000 cost for an 18 day stay for two including all travel, room and board AND treatment is a BARGAIN!

 

We do not care about FDA approval and feel there are so many other things that play into whether that happens or not.  Not having to follow US laws gives them access to so many more options.

 

The main three treatment tools are B17/laetril, ozone therapy and high dose intravenous vitamin C.  Could these thing possibly hurt?  I don't think so.  And if they can help, why not try?  We are looking for a stage 3C patient, currently NED, so needing adjuvant therapy to stay that way for a few more decades.

 

Thoughts?  I'll try to add a link.  www.oasisofhope.com

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POW's picture
Replies 11
Last reply 5/4/2013 - 5:26pm
Replies by: POW, MeNDave, Anonymous, casagrayson, Mickey n Jo, Sherron, sharmon

I just posted on the Off-Topic forum basically asking the question: "Is there is a "healthy" way to grieve?" ( See thread "Confused by my grief counselor".) I know that everyone grieves differently, but should I accept the advice of an experienced hospice grief counselor or should I do what comes naturally to me? I know that other people have lost loved ones in the past but this is the first time for me, so I would appreciate your insights.

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BrianP's picture
Replies 33
Last reply 5/22/2013 - 9:34pm
Replies by: BrianP, POW, Linny, Tina D, Janet Lee, Randy437, Anonymous, jmmm, Sherron, buffcody

Quick background: 2006 .91mm skin mel excised from left chest area; Sep 2011 dx of stage IIIB, axilla disection, 24 nodes removed 2 positive; Nov 2011 local rediation; Dec 2011 begin interferon; Dec 2012 complete interferon; Dec 2012 clear scans (pet and Brain MRI)

I've been feeling a little run down lately so a few weeks ago I ask my Dr to put in lab work for me to check my iron levels.  For most of my life I've had a tendency to be anemic at times.  Blood work comes back as being anemic.  I'm just thinking no big deal, I've been this way my whole life just give me some iron supplements and I'll be on my way.  Dr persuades me to give stool samples to see if there is any other underlying causes to my anemia.  I reluctantly agree and of course all three stool sampes came back as positive for blood.

My two biggest fears now are 1) I could possibly have colon cancer or 2) this is a reoccurance of my melanoma.

My question to the board is if anyone has seen or heard of blood in the stool as a symptom or indication of possible melanoma reoccurance.  I don't recall seeing the stomach or intestines as a location where metasises typically occur.  I know there are many other possible less severe diagnosis but as many of you know it's difficult not to be concerned that the mel has returned anytime you have anything out of the ordinary.

Any advice or comments would be greatly appreciated.

Brian

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thrashter's picture
Replies 11
Last reply 4/16/2013 - 6:55am
Replies by: Anonymous, kylez, Tina D, Phil S

Well today was mixed met with Oncologist and after removing another (7) clump of lymph nodes back to more biochemo sessions. Did (3) sessions already. She doesn't think radiation at lymph node area is much worth doing but will let me visit with radiation oncologist after next two bio sessions. This gets kinda old. 

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Richard_K's picture
Replies 8
Last reply 4/13/2013 - 6:51pm

 

I had a weird appointment with my doctor today, weird because this was the first appointment where there were no scans to review.  The scan frequency was recently changed to every twelve weeks from every six.

I was anxious about my blood work though, specifically my bilirubin.  Not to worry, all was fine and I got enough Zelboraf given to me for another six weeks.  It’s now a little over 37 months on Zelboraf.

Dick

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juless1's picture
Replies 5
Last reply 4/10/2013 - 5:03pm
Replies by: Anonymous, Erinmay22, kylez, Tim--MRF

Any recommendations out there for a melanoma specialist in NJ?? our insurance will NOT let us leave the state....andy and all input greatly appreciated...thanks!

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juless1's picture
Replies 8
Last reply 4/11/2013 - 11:35am

My husband is stage 4 metastic melanoma and we have not seen a melanoma specialist.  His oncologist is GREAT and we have alot of confidence in him.  But....now I am wondering if we should be seeing an oncologist that specializes only in melanomas.  From what I have read his treatment is standard protocol  - he is BRAF negative so Yervoy was his drug of choice.  Are we wrong not to go to an oncologist specializing in melanomas?!?!?

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Tim--MRF's picture
Replies 4
Last reply 4/12/2013 - 12:28pm
Replies by: mrsmarilyn, POW, Owl, NYKaren

I have been on the road a lot and am a bit behind on posts with MPIP.  Karen, thank you for flagging your post about the new GSK drugs.

GSK has two drugs for melanoma--one is a BRAF inhibitor like Zelboraf (vemurafenib).  The other blocks the next step down in the MAP kinase pathway--MEK.  The data is complete on these drugs and the FDA is currently reviewing the data.  They have announced June 3 as the PDUFA date on these drugs, or the date by which the FDA response to the application will be made.  Sometimes the PDUFA date is pushed back, as happened with Yervoy (ipi) but this is rather unusual.  More likely the June 3 date will hold, or something will be announced early.

The BRAF drug, dabrafenib, will only be available to people whose tumor has the BRAF mutation.  The MEK inhibitor, trametenib, will likely be used for people who are BRAF wild type but have the NRAS mutation, and may be used more broadly than that.

The best thing about this is that with an approved MEK inhibitor doctors can more readily prescribe the BRAF and MEK drugs on combination.  The data is clear that this is a better approach than a BRAF inhibitor alone.

Since GSK did not apply for approval of the combination it is not clear if payers (insurance companies) will cover the cost of the combination.  This will all need to be worked out, and might be an opportunity for the patient voice to be heard.

By the way, I am in Denver for our bi-annual in-person board meeting.  If you have anything you would like me to convey to our board please send me a note at tturnham@melanoma.org.  We meet this afternoon and tomorrow morning.

Tim--MRF

 

 

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Colleen66's picture
Replies 1
Last reply 4/9/2013 - 8:11am
Replies by: G-Samsa
SD's picture
Replies 3
Last reply 1/8/2016 - 12:21pm
Replies by: Anonymous, SD, vivian

Hello, 

I'm 33 years old male from Delhi India. I've been diagnosed with metastatic Desmoplastic Melanoma  stage 4. It originated at a mole on scalp and metastasized to salivary gland and lymph nodes nearby. All of it was discovered almost simultaneously and was surgically removed (with wide excision). PET CT now shows NED. It has been one month since the surgery and I am now struggling to find sound advice or treatment from doctors in India. I have been to the best ones here. They all say its too rare for them and they are not sure of the best course of action, although they have mentioned interferon -alpha as one of the options.

I have decided to come to US for a month to explore further options. 

My most pressing concerns at the moment are - 

What should be the course of treatment for me now?

Which doctor/hospital should I consult with in US - I'll be travelling to New York first and have friends there. NY and surrounding area will be most comfortable for me. So far I'm leaning towards about Dr Sanjiv aggarwala of St Lukes's UHN, in PA. (based on reference from doctors here, but they dont know him directly). The other frequent recommendation is MD Anderson in Houston. Any other better ideas?

I would be obliged for any guidance/suggestions you all can offer.

Thank you!

SD

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