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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Anonymous's picture
Anonymous
Replies 4
Last reply 11/17/2017 - 5:26pm
Replies by: wildpoppy, Anonymous, Joycem

Hello all

I feel very much like a fraud posting, since I don't have a diagnosis... But I am undergoing severe anxiety at the moment with regards to a lesion that has sprung up very quickly on my forearm. Never noticed it before 1 month ago.

It is pink/skin colour and currently 4x5mm in diametre... half way down forearm on lateral edge so have to twist arm to see it.... slightly raised by about 1-1.5mm... resembling a noduar amelanotic or basal cell ...I have spent HOURS researching :-( and have found many pictures that look like it either of these.

I went to my dctors 10 days ago, as it looked dodgey and had white flaky skin over it...they told me it was probably a bite... :-(

10 days later, it is still here possible gotten bigger (my paranoia, I don't know? but I do think it is)... 

Ok, so I know I need it seen, and have booked a private dermotologist,  so going next Friday. My anxiety is through the roof however, as I am sure everyone on here understands. I can't focus at work, can hardly eat or sleep. I have a 10 year old son, am lone parent, we are very close, and just can't bear the thought of my boy being alone.

Is there any advice anyone can give? Anyone else diagnosed, may I ask what your amelanotics where like before diagnosis? 

I have been in the sun extensively in the past, without protection, and this is currently haunting me...

How do you get through the waiting?? I am trying to keep busy but can even string a sentence together, and spontaneously burst into tears... If anyone has any words of wisdom, I would gratefully receive them.

 

Thank you for any help x

 

 

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jetdoctor67's picture
Replies 5
Last reply 11/17/2017 - 4:06pm

Hello Everyone,

Well, I had my surgery for melanoma on my ear (.04 cm size and .66 mm deep) on the 25 Oct.  The actual surgery went well however I'm numb around the SNLB site (neck under left ear) which I'm guessing this is normal but I've lost some facial movement specifically the left side of my chin and mouth area.  My Doctor said he did not cut the main nerve but working around it may have put it into shock which is causing the numbness and loss of movement.  He also said I may regain all or some or none of the movement back but let's wait three months before we worry. 

My question is has anybody else experienced this?  Would love to hear your experiences.  Thanks and take care.

Terry

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sister of patient's picture
Replies 19
Last reply 11/17/2017 - 12:43am

Hey all - Couldn't wait to share this news, though my sister Leisa had her first clear scan in July, Oct. 30 scan is the same - she is totally clear and the onc has finally said those precious little letters - N.E.D.!!! Yayyy!!!

Have said it before but can't say it enough - thanks to so many on this board - you got us through it!!!!!

Best always,

Barb

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Scooby123's picture
Replies 5
Last reply 11/17/2017 - 12:42am

Hi all, hope you all as well has can be. Been a tough few months a lot happening at home and me on treatment.

 

went today for bloods had scans last week was not expecting results today but consultant had a look due to MRI on head was back but body was not. Head still clear tumour in head as now resolved no evidence of tumour., Body was not back but lympth nodes in chest 2 there was enlarged have shrunk. So he was pleased with results. Thyroid increasing dose to 75mg from 50mg. Side effects for me have been musle cramps in ribs and the trips to the loo . 

Been a emotional few months have been feeling down and my mum had a stroke. So if I have not been online much sorry.

There seems to be a lot of new people on line so I would say welcome and you have come to a wounderful place for support. There is lots on board who have great knowledge of this disease and very much needed.

Thank you all for all your support would not know what I would do without you all.

Scooby❤️

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/16/2017 - 8:18pm
Replies by: kst, Bubbles, Anonymous

I've just had lymph nodes resection and depending on pathology report the game plan is to continue with immunotherapy /anti-pd alone since latest research it shows it's more effective that the Ipi combo/ as an adjuvant treatment.My understanding is ,once you have used this option you can't go back to it. So my dillema is this : what if I need immunotherapy down the line  and this option is no longer available for me?I would like to keep that option open as long as possible  but I also want to be pro-active  with adjuvant treatment post resection  and leave nothing to the chance.Any thoughts?I am really torn ot treatment decision.

T.Chasse

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Spl25's picture
Replies 1
Last reply 11/16/2017 - 6:28pm
Replies by: Bubbles

Has anyone heard much or tried this therapy for bone or liver mets? It seems fairly new and not melanoma-specific, but I’ve seen some promising data for people who can’t do radiation. 

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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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