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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DeniseK's picture
Replies 31
Last reply 6/20/2013 - 10:06am

Hello Everyone,

I just got back from my Radioloy Oncologist from my first round of SRS.  The Dr. pulled me into the office prior to treatment and told me we are not fighting just one brain met anymore, we are fighting 7.  There are only 2 that are big enough, 1cm and 12mm, that we can target at this time.  The rest are 4-5mm at this time or smaller.

I'm getting a PET scan done this Thursday to see if the Z has stopped working or maybe it's just not working on my brain.  I was planning on going to see my specialist and hopefully get into some trials but now that's out once again.  Now I will be seeing him to figure out what my next plan of action will be.  IPI? Braf + Mek? Temador?  I know there are others out there with the same situation, can anyone offer any advice or tell me a success story, I'm feeling really deflated.  My daughters wedding is March 2014 and I don't know if I'm gonna make it.  It was just 2 months ago that I only had the one brain lesion and now I have 7, seems like it's getting pretty agressive.  I won't know the status of the rest of my body until probably next week.  Uugghh!!  I was really hoping Z was gonna work.

Any help will help!!

Thanks,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Hi All,

Dr. Schuchter and Dr. Fecher will provide callers with a recap of the 2013 American Society of Clinical OAs you may have heard, there was a great deal of very exciting melanoma research news announced at last weekend's ASCO annual conference. Please join the MRF on Thursday, June 13th from 4-5pm EDT as Dr. Lynn Schuchter and Dr. Leslie Fecher provide a recap of the latest on melanoma treatment options, clinical trials and research.  Call information can be found on the event page.  Please be sure to register!

Shelby - MRF

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Cindy VT's picture
Replies 1
Last reply 6/11/2013 - 8:31pm
Replies by: aldakota22

I know I have been dealing with this disease since 1984, but there are some things long term that come along with it.

One of them is fluid around the heart and lungs.  This weekend I awoke to incredible pain in my back and then the next day Sunday it went around my chest and I could hardly sit back .  I take of all things a gout medicine for this because I'm allergic to all NSIDS.  I talk to my doctor to tell him I would be taking the medicine.  He thought I should come in, but I know if I come in I'm going in to the big House and the last time I was there it was a nightmare.  The big house being the Hospital.  It was so bad last September when I had a heart attack, after 5 days I had my daughter come pick me  up and check me out.  So....I try to deal with things at home. 

Now I am having a reaction to the medicine.  Its called (my spelling is not good) Chochisin.  (I think that is right).  Next week is my 27 year old daughter's wedding.  What a time to get sick.  Oh well if the pain gets bad enough I guess I'll have to go to the big house.  I'm praying I just get better. 

 

Cindy VT

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Anonymous's picture
Replies 11
Last reply 4/23/2014 - 7:44pm
Replies by: MoCedar, Anonymous, mbaelaporte, POW, aldakota22, G-Samsa, Cindy VT

Since being diagnosed with Stage 4 I’ve continued to work full time (only taking time off for surgery).  Recently my work stress has been increasing (meaning long hours at work, major projects, travel, etc).  While my health anxiety seems to be ok right now, my work anxiety is higher than ever!  I worry that this could have a negative effect on my health (currently in clinical trial). 

I am going to reach out to my medical team to get their advice (the nurse and counselor) about how folks handle it but wanted to hear folks thoughts on the process.

1.       I may see about reduced hours or work from home ½ time?

2.       I have short term disability I could see about taking (if my doctor is in agreement)

3.       OR look at applying for social security disability.  But that leaves me with LOTS more questions:

a.       What steps need to be done to apply for this? 

b.      How long does it take before it would start?

c.       What about insurance?  I worry about this since I have a good job/benefits which is why I put up with the work stress… but it’s just getting to be too much!  Would I be better off with a no-stress job? 

Any thoughts/guidance folks have would be appreciated! 

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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LesleyKS's picture
Replies 5
Last reply 7/9/2013 - 2:27pm
Replies by: LesleyKS, trippettl, Janner

Hello all.  I am a 34 year old female who has had, in less than year: Melanoma In Situ on left leg, pre-melanoma on back, several severe atypia and now a new one that I don't understand the pathology report for and would like anyone's help in understanding it.  My doctor wasn't really explaining it to me and I am wondering if that is because it is inconclusive?  This pathology is for the initial shave biopsy, I have already gone back and they did a punch biopsy on the site to remove more tissue.  I am still waiting for the pathology report for the second removal.  Here is the report:

"Submitted is a single cell slide of  shave biopsy material that shows a compound melanocytic proliferation composed of epithelioid cells within the epidermis primarily seen in confluent single cells along the lower epidermis and with rare cells in the spinous layer.  The dermal component consists of nested epithelioid cells as well.  The proliferation is transected at the base.

Diagnosis: Skin, right posterior neck, compound melanocytic proliferation with epithelioid cell features, extending to the tissue margins.

COMMENT: The differential diagnosis includes a compound nevus with spitzoid features versus an atypical spitzoid tumor.  The lateral and deep tissue margins are involved and therefore because circumscription is not seen, re-excision with appropriate margins to ensure complete removal is recommended"

I had never heard of Spitz or spitzoid before and my doctor didn't explain it to me.  Google search are unhelpful and at times frightening so I would greatly appreciate any explanation any of you can provide.  Also, does anyone recommend sending the slides to someone else to get a better, more clear, diagnosis?  Or should I wait for the second pathology report?

Thank you in advance for your support.

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NYKaren's picture
Replies 13
Last reply 6/26/2013 - 11:33am

Yesterday I met Dr. Anna Pavlick. Wow. What a lovely, smart powerhouse of a woman. If all goes well, I should start the Merck phase 2 PD1 trial at NYU. Dr. Wolchok sent me to her when Merck abruptly closed remaining seats of the phase 1 trial @ Sloan. Dr. P feels that the brand new tumor in my ear should show up as measurable disease on the MRI I will be having on 6/25, the end of the 28-day wash-out period from Zel. There are a few more mets that should show up as well. I wished for 1 to be large enough, now I've got a whole harvest going here, of course making me worry even more... What if I get the chemo arm, what if the PD1 doesn't work, blah blah. You get the picture. But we both agreed that I'll still have the 2 new GSK drugs & hopefully still Zel in my back pocket.
I think that's about it for now, I'll keep you posted.
Karen

Don't Stop Believing

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jcmp's picture
Replies 1
Last reply 11/12/2013 - 9:10am
Replies by: Golda_

Hi Tim,

Do you know whether those who are BRAF 600E positive and have had Zelboraf in the past are eligible for the GSK BRAF and/or MEK inhibitor?  I read the GSK press release which states that the BRAF inhibitor (Tafinlar) is not indicated for use for those who have BRAF-wildtype melanoma.  For the MEK inhibitor (Mekinist), it says the same thing and also that it is "not indicated for the treatment of patients who have received a prior BRAF therapy."   If that's the case, it seems that everyone who has had Zelboraf cannot have the MEK inhibitor.

Could you please clarify this issue? 

Thanks so much.

 

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Shelby - MRF's picture
Replies 7
Last reply 6/13/2013 - 10:46pm

The Melanoma Research Foundation is working hard to make our website an even better experience – where the community of people with melanoma, survivors, researchers and caregivers can find and share valuable information and support, as well as find out about opportunities to get involved.

We value your opinion, and invite you to take a moment to complete a brief survey on how you think about and search for essential information on our site. The survey will take no more than 10-15 minutes, and is followed by a few very important exit questions. Here’s the link: http://bit.ly/106golB

Thank you for participating, and be sure to share the link with friends – the more input we get, the better your experience with the MRF website will become!

Because we are hoping to get a new website up and running as soon as possible, we’re asking respondents to complete the survey by Thursday, June 13.

Sincerely,

The MRF team

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Charlie S's picture
Replies 15
Last reply 6/11/2013 - 9:52pm

This month, in 1987 a surgeon stuck a knife in me to remove a lump.  That lump, a lymph node,  ended up being a lymph node that had been completely replaced with cancer and after an exhaustive pathology, and examination by  an electron microscope, six months later was determined   to be  Stage Three Malignant Melanoma with an Unknown primary.

Plus one year, that was a quarter of a century ago.

My prognosis?  Time bomb.  It was not a matter of if but when.  There was no MRI, there was no CT , there was no PET, there was no Sentinel Node Biopsy, there was no Clarks , there was no Breslow, there was no internet, there was no MPIP, there was no MRF and  only two researchers, Seglar at Duke and Rosenberg at NIH  had an interest in melanoma.  I saw them both.

I went crazy, got a Macrobiotic Reading in DC, moved in with a bunch in Boston that were followers of Michio Kushi, drifted away after a year and wnet about living.

Fast forward nine years later to 1996 and I felt a new lump.

I could go on and on, but since 1996, when I became Stage IV, melanoma and I have have been in several fights.

Once, I openly defied melanoma to give me its' best shot.  It did, but what I did not realize is that it would go after my friends, and it killed many of them.

Once, I met a lady here, Kim Hanley (Kim from Iowa) and we ended up being lovers, and I ended up being her caregiver and she ended up dying in my arms

At her death, is when I first met Melanoma face to face.  Moments after Kim died and her body went cold, a person threw their body across Kim and then was inches from my face laughing, but scared.  The evil in that persons eyes were evident as was the aura of death, yet there was fear.......fear that I would not acknowledge; and that person ran from the house.  I do believe to this day that it was melanoma fleeing and Kim threw it out.

My patnet is seriously out of date about my 7 recurrences and Kim are not documented here and how I overcame them, but know this:

Charlie 26 Melanoma Zero.

If I can do it, so can you.

Take THAT Melanoma

Cheers,

Charlie S

 

 

 

 

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Tony_T's picture
Replies 2
Last reply 6/26/2013 - 2:35pm
Replies by: parkmk80, Janner

Came across this site with a Google search and am quite impressed with it. I am hoping someone can help me decipher what seems to be different information regarding dysplastic nevi. I am 53, male. About 3 years ago I went for a derm follow up on my wife's request to have a "suspicious" mole looked at. The dermatologist told me at that time not to worry. This asymmetrical mole has been there for many years, I would say maybe 10 and has transformed very little to my untrained eye over the years. Has it changed, yes, but as measured by years and not months. Recently, my GP referred me to have this looked at again, since she was unaware of my previous dermatology assessment, so i went to the same dermatologist. It is the only asymmetric mole on my body, right abdomen. I would say I have less than 50 moles all totaled, so is this one the ugly duckling? The resident suggested I have it removed. The senior derm gave me the option of 6 months watchful waiting. I opted for the surgery. Thing is, during the procedure, I asked some questions and the resident MD said there was about a 30% chance that this could be a melanoma, and depending on the pathology report, different options would exist, one including lymph node removal. I am an extremely anxious person, especially for medical issues and of course this statement floored me. When I googled the topic I read in some places that up to 10% of the populations have these dysplastic nevi. I imagine that if 30% of 10% of the population developed melanoma, the incidence would be much higher. Other facts about me, no melanoma in my family (mom had basal cell from sun worshipping) she is 80 and still kicking, the mole measured 6mm x 6mm, it is the only one on my body, I am Mediterranean descent so no fair complexion, freckles, blue eyes etc. I am worried sick about the possibility that this event could lead to a melanoma diagnosis. Any help from anyone who is familiar and up to date with what the true reality is would be greatly appreciated. I am really trying to understand and put into perspective how probable is it that I am a melanoa patient based on this. The anxiety is getting the better of me and i will not get my results for several weeks still

Thanks so much to everyone who takes the time to answer

Tony

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Husband doing well after the surgery last Thur day. no real side effects but pain from the remaining lymph nodes coming out. Called Dr Zager (Melanoma surgeon) and they won't know Amy more till the Wednesday cancer boarfd meeting. guessing there will be some systemic treatment, pills etc.
Dr Toloza did remove his surgery but we are waiting yo hear from his office what the plan is for thebling cancer. Guessing it would be radiation

my husband is glad no long surgery but down once again as the plan is not known to us yet. plus both cancers are still growing.

I know we have to wait, but open to thoughts or prior experiences.

Thanks Mary

Hugs to all, patients and care givers.

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ecc26's picture
Replies 3
Last reply 6/10/2013 - 6:28pm
Replies by: Tim--MRF, ecc26, SteveH230

I finished my last course of IL2 5 weeks ago and now must start Ipi due to progression. I have been looking for information regarding side effects of having the 2 therapies relatively close together but have pretty much come up empty. I know you have to wait at least 4 weeks after IL2 to start Ipi, and I'm past that point at 5 weeks.

Does starting Ipi close to finishing IL2 increase the likelyhood or severity of Ipi side effects?

Has anyone else had the therapies relatively close together who could share their experience with severity of side effects? 

Also, anyone who has had Ipi after IL2- were the side effects similar, or did you get completely different side effects with each therapy?

I'm relatively concerned (as are my doctors) that I will have an increased chance of the severe colitis/colon perforation because I had colitis with the IL2. I'm also wondering if having the 2 so close together puts me at any higher risk for the more severe/immune mediated side effects if my immune system is already "up in arms" so to speak (I did have many tumors shrink or dissapear with the IL2).

Any insight or information would be very helpful!

Thanks

Eva

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tony9511's picture
Replies 2
Last reply 6/11/2013 - 9:13am
Replies by: buckytom, Muru

Hi just finished my neck dissection for stage 3 melanoma.  I mean I have finished my physical therapy.  My neck is still sore and swollen 2+months after the surgery.  I am scheduled to start interferon soon.  Anybody have a similar situation with the neck nodes swollen after surgery?  Thanks.  I have regained full movement in my arm and shoulder, although parts of the shoulder are still numb.  I had 38 nodes removed.  This surgery was a result of a recurrence.

 

Tony

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lrkg1234's picture
Replies 9
Last reply 6/15/2013 - 2:16am

Scott had his last dose #4 of IPI on April 18th.  He had his scan early May.  The scan showed growth in tumors and a few new ones.  His energy level was very low and was spending a lot of time in bed.  Tumors began popping up and were visible through the skin and a few above the skin.  Things were looking bad.

Suddenly, in the last week, he is full of energy.  He worked in the yard all day today and is spending more time at the office.  Crazy Good!  He is not on any medication other than pain medication. No steroids or anything else.

Now if some of these exterior tumors would go away that would be encouraging!  I hope Ipi I is doing something.  It could be that his body is enjoying a break from treatment, but it could be a positive response. 

He is like a different person!  I think he could do other treatments now because he's seeming like his old self.  Hope this lasts.

Question:

Has anyone had Ipi work for them? Was it at the 8-12 week mark or more like 16 plus weeks?  When do you think you knew that is was doing something?  

Tell me something good....... :)

Lisa (Scott's wife)

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Anonymous's picture
Anonymous
Replies 0

Severe body rash after5 days on full dose Zelboraf. Stopped x 1week, resumed half dose. Rash continued, low grade temp., swollen knuckles. Had to stop again. Anyone had similar experience? Able to stay on Zelboraf? Anyone try prednisone or other treatment? Thanks in advance, Jean

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