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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My Oncologist had a surpise for me today, after being part of Bristol Myer Squibb checkmate 067 trial of Ipi and Nivo or the Combination of both drugs for the last 3 years and 10 months, the company decided to let the remaining patients that where blinded know what they have been getting!!!! I have been a member of the forum for the last 3 years and 9 months, so many times I have been frustrated by people asking about what kind of side effects they should expect on Ipi/Nivo or either of the two Pd-1 drug and I couldn't respond from a personal point of view due to the fact that I didn't know for sure what I have been getting. I am happy to report that after 97 treatments I can finally say with 100% confidence that I am getting "Nivolumab" not placebo every two weeks. I feel like a huge weight came off my shoulder today!!! So many forum members have talked about having a plan if things stop working, well I can now put one in place with confidence!!! This is also my first offical post ever on the forum and it feels pretty good. Love you all, even the Anon's!!! Ed

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Sandi Conley's picture
Replies 7
Last reply 11/16/2017 - 9:24am

I had initial diagnosis of melanoma in 1997.  It was on my right foot and I can't remember levels.  Had wide excision with sentinal node byopsy.  SNB came back clear.  No treatment.  Did follow up appointments for 12-13 years, then got lax and quit going when my dr moved away.

fast forward 20 years ..Jan 2017 went to ER with severe back pain.  CT showed mass on adrenal glands.  I had two lumps removed from chest area and under arm.  They came back melanoma.  (Previous lumpectomies were negative)

pet scan showed melanoma in bones, adrenal glands and soft tissues.  Went for treatment at IU Simon Center.  Was started on Opdivo/Yervoy treatment.  Was ready to get 3rd treatment when MRI showed mets to brain.  Stopped treatment.  Had radiation to brain.

In April, Started Tafinlar and Mekinist as I was positive for mutant Braf gene.  Went into remission very quickly.  Remission lasted almost 7 months.  Scans on Nov 7 showed cancer on spine and kidney.  MRI showed 2 small places in the brain.  I will have gamma knife radiation on them Nov 21.

my Dr has recommended I get a second opinion.  He says it is time for clinical trials.  I live in Indiana and I'm just overwhelmed wondering what the next step should be.  Any advice or encouragement would be appreciated.    Thanks, Sandi.     (68 yr old female)

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/15/2017 - 4:28pm

Can you take Tylenol before brain gamma knife? They didn’t tell me otherwise, but wanted to make sure.

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liam1209's picture
Replies 13
Last reply 11/15/2017 - 3:55pm

My 61 year old father was just diagnosed with malignant melanoma. I'm basically trying to find the best melanoma cancer specialist/ hospital in the US or world to treat my dad's cancer.  Would love to know your suggestions. 

More details below:

He is currently abroad and all these tests took place abroad.  I am trying to identify who would be best doctor/ hospital in the US or world  to review his case to date after he gets MRI and PET results next week. I live in Los Angeles and he could stay with me if there is a great hospital near me. He also has family in Seattle.  But in general location is not a problem we are just trying to find best care.  

General oncologist recommended he see a Melanoma specialist.

Symptoms summary:
1. Had swollen lymph node from Feb-June 2014.
2. Lymph node removed via surgery (left side of neck behind and below ear) on
June 18, 2014.
3. On July 21 pathology report from lymph node received malignant melanoma
(Immunochemical testing in USA results: Malignant melanoma
(S100+/SOX10+/NKIC3+/MiTF few+), spindle cell type involving lymph nodes).
4. Still unknown where melanoma originated (possibly from July 2013 nevus but
pathology negative for melanoma) but dermatologist finds no evidence on skin
on July 23.
5. Aug 4, 2014: CT’s (cat scans) of thorax, abdomen and pelvis show two
small (about 1 cm) nodules in lungs and Oncologist recommends PET CT to see
if these are related to malignant melonoma.
6. Cerebral MRI pending (scheduled to take place on Tuesday, August 12th)

**no other symptoms, all blood work good, feels great, no skin or retinal
melanomas evident.

 

Thanks so much!!! 

Liam 

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Anonymous's picture
Anonymous
Replies 0

T.Chasse

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alciadudg's picture
Replies 1
Last reply 11/15/2017 - 1:00pm
Replies by: Anonymous

Hey!! My sister is diagnosed with melanoma 2 years back. Is it safe for her to conceive during the melanoma treatment? Last day, she told me that she thinks she is pregnant. Initially, I was happy to hear but later I remembered her condition. She is very weak after all the treatment. She was in stage 2 and now she is recovering from it. I have asked her to confirm it asap. I'm worried about the situation. She and her hubby were longing for having babies. She told me that if she is pregnant she won't miss this chance. She told me that she will undergo prenatal massage therapy from Toronto as she heard that it will improve all the functionality and reduces the pain. I don't know how to convince her. I just want to know if anyone here became pregnant with melanoma. Any advice is highly appreciated. Can this melanoma be treated with any kind of physical therapies? Please share your wisdom!

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Wife_WilliamR's picture
Replies 9
Last reply 11/15/2017 - 12:58pm

I have been a "creeper" on this page since 2010, but never posted.  Sorry we are all on here and have to meet like this!

In 2000 my husband William had a Stage I melanoma removed from the back of his hand.  In 2010 it returned to his elbow (stage IIIc), he had surgery to remove, 5 radiation treatments and tolerated 5 months of Interferon.  It returned to the elbow and small lung nodules in August 2014.  He had multiple surgeries on his arm.  He started Ipi/Opdivo combo trial at Johns Hopkins from December 2014 - October 2015 and although that seemed to keep his slow growing melanoma at bay it was not eradicating it.  Dr. Sharfman recommended we go to NIH for TIL therapy.  He received TIL during the month of February 2016 along with 4 doses of Keytruda.  Until November 2016 the small lung nodules remained stable, but started showing signs of progression.  Docs at NIH recommended the Urelumab/Nivolumab trial which would be back at Johns Hopkins for us.  We also went to Memorial Sloan for a second opinion with Dr. Postow who thought the trial was a reasonable next step for us.  William started the trial 1/6/17 and after 4 treatments the scans show minimal growth.  He is to stay on the trial and get rescanned 4/21/17.  If in April there is growth then they would remove him from the trial.  I am looking for thoughts on what would be next to try - he is BRAF negative but does have the NRAS mutation.  We have "heard" things like TVEC and chemo could be the next step.  I am the one who does all the "research" for William and am terrifed I am missing the best opportunities for him.  (We live on the East coast, but can travel for treatment.)  Thank you in advance for anything you have to offer!!

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Anonymous's picture
Replies 3
Last reply 11/15/2017 - 10:16am
Replies by: cancersnewnormal, Anonymous

Just curious here as I make treatment decisions in my mind. I’ve heard the stories of fast progression after Braf therapy, and have had a relatively slow moving cancer to date.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/15/2017 - 10:14am
Replies by: cancersnewnormal

Hi,

I am a 30yo with a history of BCC at age 20.  Over the past six months, I noticed a mole changing (becoming raised and it was occasionally itchy).  It looked different than other lesions on my arm.  My doctor agreed that since I have a lot of freckles/moles that don't bother me, it made sense to get this one removed if it was bothering me.  I just received a preliminary pathology report and the findings are unclear.  Apparently the case is being reviewed by several consultant dermatopathologists to come up with a consensus.  I have to wait at least three weeks to review the final pathology and my surgeon isn't even sure it will be ready at that point.  I am driving myself crazy trying to figure out what features in the report are concerning and what features are reassuring.  Can anyone help provide some insight?  The report is as follows:

 

Left Arm: ATYPICAL MELANOCYTIC PROLIFERATION - PRELIMINARY REPORT ONLT

Sections show an ellipse of skin with an intradermal melanocytic proliferation composed of epithelioid melanocytes with vesicular nuclei and prominent nucleoid.  The melanocytes possess abundant pale slightly pigmented cytoplasm.  They are predominantly arranged as nests with occasional single cells in the dermis with a periadnexal growth pattern.  Maturation with descent is lacking.  A perivascular and interstitial lymphohistiocytic inflammatory infiltrate with melanophages is present.  The melanocytic proliferation appears completely excised within the planes of sections examined.  The histopathologic findings are unusual and although the lesion may represent an intradermal Spitz nevus, the case will be reviewed by other consultant dermatopathologists in order to obtain a consensus opinion.  An addendum report will follow.

 

Is it pretty common to have a preliminary report issued and then have some consultation?  (i.e. am I worrying for nothing because this happens all the time).  Or is there a real chance there could be a bad outcome here?

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Elaine Block's picture
Replies 2
Last reply 11/15/2017 - 12:13am
Replies by: Nashvillian, Bubbles

Has anyone had any success in getting Medicare to pay for Opdivo for Stage IIIC?  

My husband, David, had a melanoma removed from his back in May -- SNLB came back clean.  Then in July he had a newly discovered metastatic melanoma that was in transit to the lymph node removed from his back.  

He was scheduled to begin the ipi/nivo/nivo+ipi trial in the end of September, (just within the 10 week time limit) when our onc seemed to warn him off the trial. He was concerned that David might be randomized into the Ipi only arm and I think that, especially in light of the results of the most recent study finding Nivo superior to Ipi, he wanted us to consider waiting until Nivo was approved for Stage III melanoma, which he thought would be imminent.  

I understand that Nivo has now been added to the NCCN protocol for Stage III melanoma, but hasn't yet received FDA approval for Stage III -- we're assuming (as are the finance folks at Georgetown Lombardi) that Medicare won't pay for Nivo for Stage III until the FDA approves it.  In looking through posts here, though, I've read about a couple of people getting insurance coverage for Stage III and wondered if anyone has been able to get Medicare to pay for it.We are very uncomfortable not to be getting any adjuvant treatment.

Thanks,

 

Elaine

Husband, David, diagnosed 5/2017, stage 3C

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MLWHIT's picture
Replies 10
Last reply 11/14/2017 - 10:51pm

I have stage three and it was found in the lymph node after sentinel node biopsy.  Still waiting on some further scans for validation that it hasn’t metastasized to other areas of my body. I will consult for first time re immunotherapy on Wednesday.  I discussed removing remaining lymph nodes vs taking a wait and see approach.  Due to the fact that these lymph nodes are in my groin area I am worried about the impact on mobility and likelihood of swelling in my right leg.  I am leaning towards the wait and see approach but wonder if I am missing something.  I have young sons and am thinking about the immediate participation in their daily lives, but scared that I may be making a decision that could impact my lifespan.  

Thank you for any insights  

 

MLWHIT

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KMick's picture
Replies 5
Last reply 11/14/2017 - 10:50pm
Replies by: KMick, Momofjake, BrianP

Anyone heard news regarding Jake?  I think of him often and hope and pray for the best.

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wmpado's picture
Replies 10
Last reply 11/14/2017 - 9:34pm

Hi my name is Wendy, I am a 45 yr old married mom to 4daughters who was diagnosed in August of 2017, with stage 3 melanoma on my left leg.  On November 2nd I had surgery to remove the rest of the tumor and the affected lymph nodes, also had a skin graft for the tumor site.  I just found out that 2 of the 3 lymph nodes they removed from my groin were malignant.....so now I go to my Drs next week to discuss what's next.  Needless to say I'm nervous, but am also looking for questions or things I should bring up to my surgeon.  I'm an going to ask about a PET scan and recommendations on oncologists, and what's the advantages to surgery vs the ultrasound testing every 3 months.  Just trying to be as informed as possible.  

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jetdoctor67's picture
Replies 6
Last reply 11/14/2017 - 3:55pm
Replies by: jetdoctor67, J.bun, cancersnewnormal, Anonymous, Janner, doragsda

Hello All,

I was recently diagnosed (Sept 8, 2017) with nodular melanoma on my left ear (size 0.4cm, depth .6mm) from the dermatology pathology report. I had a WLE and SNLB on Oct 25, 2017 where 10 lymph nodes were removed.  I received the pathology report which said the tumor was actually 1.5mm deep.  The good news is that no traces of metastases was identified in any lymph nodes.  My final pathologic staging is (pTNM) pT2a,N0.  My doctor (plastic surgeon) has not recommended any further treatment or scans.  My question is should I request or see an oncologist and/or request a chest x-ray and CT scan if for no other purpose to have a baseline if more melanoma is diagnosed in the future.  I welcome any suggestions or comments.

Thank you all,

Terry

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Newmanbell's picture
Replies 1
Last reply 11/14/2017 - 3:48pm
Replies by: Anonymous

What a morning it was for us.  Our Oncologist in Syracuse set up the appointment for us to meet with Stephen Hodi (the 2nd time) to see about future treatments and recommendations.  You all know the anxiety about such an important meeting, in addition to taking two days off of work to drive the 5 hours there and back the next day.  When we arrived, Dr. Hodi greeted us nicely but he was never sent a thing from our Oncologist.  No records, zero which included the recent MRI this past week.  He could not advise us whatsoever.  Talk about us being very upset.  We clearly had Stephen Hodi listed at our home office to be sent information.  In the end we did get the MRI report, thanks to a very efficient administrative assistant, and he was able to tell us the spot on the liver is nothing to worry about and he is present NED (he is stage 3B).  He was truly a doll spending such an amount of time with us when he really didn't have the data he needed.  Believe me we had some calls today to our doctor's office.  This can never happen again.   We just drove home from Boston, it is 3:40 in the afternoon, and already I am in pj's in bed.  The roller coaster just did us in.  What should of been a very positive meeting, turned into a stressful morning.  Stuff like this should not happen.

 

But, in the end NED for another 3 months.... relax and enjoy those words, right?

Donna

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