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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aliciajo's picture
Replies 1
Last reply 4/24/2013 - 1:06pm
Replies by: MeNDave

Stage IV melanoma. Zelboraf didn't work. IL2 almost killed him. Now we are going to try Avastin and Temodar together...what to except. Please Help??

one day at a time...

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lou2's picture
Replies 1
Last reply 4/14/2013 - 10:00pm
Replies by: mbaelaporte
News February 01, 2013
 

Implementing Health Reform: Boosting clinical trial participation

 

IMNG Medical Media, 2013 Feb 01, ME Schneider

Following the lead of Medicare and several states, the Affordable Care Act guarantees insurance coverage for individuals participating in clinical trials for the treatment of cancer and other life-threatening diseases.

Under the 2010 health law, health plans offering individual or group coverage cannot bar participation in clinical trials and cannot discriminate against patients who take part in trials. Health plans must cover the routine patient costs associated with participation in certain clinical trials. The plans do not, however, need to cover the investigational drug or device or services provided solely to satisfy data collection and analysis needs.

The policy applies to all phase I-IV clinical trials that are conducted for the prevention, detection, or treatment of cancer or other life-threatening diseases, including federally funded trials, investigational new drug applications reviewed by the Food and Drug Administration, or drug trials that are exempt from having an investigational new drug application.

The new federal policy, which takes effect on Jan. 1, 2014, sets a minimum standard of coverage and permits more expansive state coverage laws to continue.

Dr. Sandra M. Swain, president of the American Society of Clinical Oncology (ASCO), is an expert in the field of inflammatory breast cancer treatment and has led more than 20 clinical trials. She explained how the policy change is likely to impact clinical trial participation.

 

Question: How many states already mandate coverage of clinical trials and do the laws vary?

Dr. Swain: Twenty-nine states and the District of Columbia have laws and six states have voluntary agreements with insurers to provide coverage. The laws vary tremendously. The laws and agreements do not cover plans for self-insured, large-employer plans (or so-called ERISA plans) because they are regulated by federal, not state law.

 

Question: Will this new federal policy follow Medicare’s example and covering the treatment of complications in clinical trials?

Dr. Swain: The ACA statute does not specifically mention coverage of complications. ASCO led a coalition of 19 cancer organizations in advocating for the Centers for Medicare and Medicaid Services (CMS) – the federal agency in charge of drafting the implementing regulations – to require in those regulations that insurers cover complications. The coalition submitted proposed regulatory language on this and a number of other issues and met with CMS. We are waiting on the draft regulations.

 

Question: Is the current lack of insurance coverage for clinical trials a significant barrier to participation?

Dr. Swain: Our members have cited this as a major concern. Health plans do not always deny coverage, but they often don’t make coverage explicit and there is a lot of paperwork and time delays. This can make it difficult for patients to enroll in trials in a timely manner. Some patients also choose not to consider trial participation when they learn that their health plan may not provide coverage. An analysis from Johns Hopkins University, Baltimore, provides the most recent data.

 

Question: Since this doesn’t apply to grandfathered health plans, how much of an impact is it likely to have?

Dr. Swain: When the Office of Management and Budget released a rule on grandfathered plans in June 2010, it also estimated how many plans would relinquish their grandfathered status by 2013. The conservative estimate is 39% while the high-end estimate is 69%. As time goes on, the number of plans that lose their status will increase, thereby also increasing the effect of the provision.

 

Question: What will the impact be on cancer research and patients?

Dr. Swain: We’re hoping it will help make it easier to participate in clinical trials. Perhaps our outreach to ASCO members and patients about the provision will increase awareness. Anything that makes it easier to participate in research will ultimately help bring new treatments to our patients.

 

Question: What will need to be addressed when the Department of Health and Human Services issues regulations on this provision?

Dr. Swain: The statutory language about which trials are covered is very clear. Federally funded trials (including those funded by Cooperative Groups and National Cancer Institute–designated oncology centers) for the prevention, detection, or treatment of cancer are covered – including all phases of trials (I-IV). In addition, these same types of trials that are privately sponsored are covered if they are regulated by the FDA under an investigational new drug (INDA) application or if they meet requirements to be INDA exempt. We are working with the federal government to make the coverage process as timely and straightforward as possible. We developed a standard form that could be sent to any insurer to confirm that a trial meets the coverage requirements. We are hopeful that the federal government will promote use of this type of streamlined process. It is crucial that we help patients obtain a clear coverage answer as quickly as possible.

 

Dr. Swain is the president of ASCO and the medical director of the Washington Cancer Institute at the MedStar Washington Hospital Center.

 

------------------------------------------------------------------------------------------------------------------------------------------------

 

And just in case you thought this was going to be easy to understand, here is more on grandfathered health plans:

http://www.healthreform.gov/about/grandfathering.html

 

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arborbnb's picture
Replies 8
Last reply 4/14/2013 - 8:17pm

I don't come to MPIP very often but back 12 years ago it was my lifeline .... I was julieincanada.  I just wanted to let you know that my husband Peter turned 65 in February - we were in Hawaii and met Vicki for the first time!  Peter was dx with Stage 3b in August of 2001.  He had several surgeries, a year of high dose IFN and 6 weeks radiation.  Yes, it was very difficult and the side effects were paralyzing.  He was off work for 7 years and we really didn't think the IFN fog would ever go .  Well it did!  He is getting ready to start another year of working in mining construction .  He flies to work in a helicopter and has learned about a whole new industry.  Life is very exciting for him.  Yes he still needs gaba for neuropathy but his life ( and mine) are good.

 

Don't give up! miracles happen.  One day at a time.

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Hello-My brother has been battling for over 11 years.  Recently he had two brain mets- in the left and right ventricas.  After spending a month in Mayo Jax, he is at home.  He is on Zel and we are seeing reduction from neck down (4 mets gone).  The two in brain not progressing.  He had 12 rounds of WBR as targeted radiation was not an option - the tumors were bleeding . I also would recommend if anyone has ever had a brain met to get scanned every 30 days- those two popped up in 45 days.

 

Now after his first check up - the Zel or it could be a delayed reaction of Yervoy - or combo of both - no more brain bleed, the brain mets slightly smaller, and as mentioned, body mets reducing.

 

We are going to see Moffitt center late April, but his wife would like to know if he is a candidate for targeted brain radiation after the WBR?  I feel like let the Zel work - and also hold out for the Dabfranib (does anyone know approval date?)

This battle almost took him out, but he is a fighter.  There is reduced mental capacity - but hoping that will improve-they say about 6 months.  I know I have a lot of questions!

You guys have helped us out for a long time- and we appreciate it from the bottoms of our stressed out hearts!!

All the best and thank you again,

MrsMarilyn

(sister of gary Stage Iv)

 

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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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