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 8/5/2017 - 7:26pm
Replies by: Anonymous, Scooby123, Bubbles

 My tumors have been genetically tested and I  just have been found to have the NRAS mutation . I would appreciate feedback from  melanoma patients that have been found to have the NRAS expression.Have you been treated with  Mekinist targeting this specific  gene mutation and  were your a responder? What side effects assocoated with that drug have you experienced? Thanks a lot.

T.Chasse

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Good afternoon,

The MRF was contacted by an industry partner who would like to interview a small number of patients to better understand their experiences with specific melanoma therapies. Specifically, they are seeking one patient who has received Imlygic and one who has been treated with a PD-1 therapy. The interviews would be conducted in mid-September via private teleconference with their clinical research team, lasting no more than one hour. If you fit this criteria and would be willing to share your thoughts, please contact Beth Allgaier at ballgaier@melanoma.org. Thank you!

Sincerely,
Adam, MRF

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jagstter's picture
Replies 7
Last reply 8/11/2017 - 10:35am

After way too long, I've finally registered & am making my 1st post. Yay! I feel like I am so much better-informed, due to many of you on this forum ... thank you, all. My hope is to be able to beneficially contribute & help others, who may be struggling in this terrible battle.

I tried to put all the pertinent details in my Bio & Profile ... I'm a classic case of learning via the "School of Hard Knocks," LOL. If I can help someone else avoid making the same mistakes, I'll truly be glad ;-)

I travel to MDA for treatment & just learned I likely have numerous metastases from my primary (July 2015 - Right Posterior Trunk, Clark's Level IV, Breslow Depth 4.0mm, Ulcerated, Lymphatic & Circulatory Invasion, w/ a Mitotic Rate of 33!) to both lungs. Radiologist cites, "Numerous bilateral pulmonary nodules in both lungs, up to 8mm" & provides 5 for example: 6mm, 7mm (2) & 8mm (2), all w/ ground glass attenuation. I've had no previous nodules on prior PET/CT or Full-Body CT scans, going back about 2 years, now. The doctor suggested exposure to hazardous materials or pneumonia (nope!) & agrees there is high probabilty it is, indeed, Metastatic Malignant Melanoma. I am scheduled to go back in mid-December for a 2nd Full-Body CT scan for confirmation. Hoping it is viral but I have no symptoms to suggest. Also, I'm 12 days in on Bactrim regimen for Prostatitis, which would have knocked out any bacterial infection potential. I hate the wait, the prospect of progression, biopsy, drugs ... it is very overwhelming :-(

Hoping & praying for patience, while I wait. Thanks, for reading & allowing me to be a part of this great group!

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MelanomaMike's picture
Replies 7
Last reply 8/5/2017 - 1:13pm

Hi ya'all, first off, hope everyone is well & in good spirits!..i have a delema, as you have learned from me, my Melanoma has crept into my lungs (right is 9cm, left is alot smaller forgot cm) what should i do? Surgery or chemical treatment? Since 2008 i have had 6 surgeries & it still comes back! I figure another surgery isnt gunna cut it, i havnt tried chem yet and it has been offered. My team leans toward surgery first but to be honest im terrified of the surgery...please respond asap! I would like yer input...thanks..

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Oldwife's picture
Replies 2
Last reply 8/7/2017 - 7:07am
Replies by: J.bun, marta010

DH just got the results of his CT scan from last week:

1. No new findings of recurrent or metastatic disease.

2. Previously described precarinaly lymphadenopathy has significantly improved from that seen in Dec. 2016, now minimally visible.

3. Interval decrease in size of a pleural-based nodule in lower left lobe.

He has been on Mek/Taf for five months. Our oncologist is on vacation, but hope to hear from her next week when she returns.

Whew!

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jrtufo's picture
Replies 2
Last reply 8/4/2017 - 4:51pm
Replies by: jrtufo, Bubbles

Hi Caring Friends-So the Keytruda didn't work for me and now I'm moving on to the Cobimetinib/Vemurafenib combo.  Living here in sunny Colorado I'm very concerned about the photo sensitivity side effect (and all of the others...)  Any one on this combo-how is it going, any success and any tips for me?

Julie T stage 3C non-resectable desmoplastic melanoma 

JulieT

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papillion's picture
Replies 10
Last reply 8/5/2017 - 11:39am
Replies by: Anonymous, papillion, MTCowhand, Jamie1960, ara82

Good evening all. I am new to this forum (and to melanoma) and I was hoping someone could ease my mind until my next doctor's appointment. I've been reading here and other sites but cannot find the specific information I am looking for.

On 7/25 I had a shave biopsy done for a suspicious mole on my back shoulder. This week the doctor called me with the results and said that it had been identified as superficial spreading melanoma. It had a Breslow depth of 0.70, mitotic rate less than 1, no ulceration, Clark level 4, all margins negative. The pathologist classified it as pT1aNx. From my reading, it seems that this should be one of the less severe forms. However, the dermatologist is recommending me to a surgeon for further excision and the sentinel lymph node biopsy. The excision part I understand but I am a little concerned/confused with respect to the SLNB. Dermatologist said that while the Breslow level was shallower than the recommendation, she wants to have it because of my age (just turned 35).  

Does anyone have any experiences with this or references they could point me towards? I know the doctors are much better informed than I am, but I would like to understand this better.

Also is a Clark level 4 unusual for Breslow 0.70? I have read that the Clark level is out of favor, but might this explain why?

I appreciate in advance any information. I am rather stressed at the moment. I haven't even been able to tell family yet as they are out of the country on vacation.

I wish you all well in your treatments.

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Anonymous's picture
Replies 4
Last reply 8/3/2017 - 6:12pm

Needing some hope today.  Can you survive if you have a heavy Stage IV tumor burden including multiple mets (10+ lesions) on the lungs and liver?  CT also says that the lung has dependent atelectasis.  

 

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Replies by: kaileetutt, Cindyco

Rovalpituzumab tesirine, Rova-T, is an antibody conjugate drug that has shown to have some efficiency in treating small cell lung cancer. My mother has uveal melanoma that metastasized to her liver & now has spread to other parts of her body. The liver is the most life threatening organ at this time, it is close to 80% compromised. We are trying to get into the Rova-T trial & I was wondering if anyone else is in the same boat or is already undergoing treatment with Rova-T? I know it has just recently been opened up to treat other types of cancer besides SCLC, melanoma is one of them. To be accepted into the trial, tumors have to test positive for expression of the DLL3 protein. Mom is getting a biopsy today & we are praying hers do. This is sort of our last option for treatment. If anyone has any knowledge or experience regarding to Rova-T or any other hopeful treatments for uveal melanoma, I would love to hear! 

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dabernethy's picture
Replies 6
Last reply 8/4/2017 - 11:20am
Replies by: Enid Weiss, Anonymous, Gene_S, laulamb, Fen, eric w

Hi - I'm trying to be a smart patient and read up on my choices for the immunotherapy. I was diagnosed in May with Level 4 Melanoma. That was removed in June, along with a precancerous spot and some lymph nodes. It was 1.4 mm deep, was not ulcerated, infected 3 lymph nodes, did not metsasize, and I have angiolymphatic invasion. I go in on the 16th to have 2 neck and the auxillary lymph node removed. Then I start immunotherapy. I almost qualified for a clinical, but the angiolymphatic threw me out. And because of that, wait and see is not an option. Dr. Kushalani threw out another option because it was not his favorite. Looks like he has it narrowed down to Low does of Yervoy or the Interferon Route. 

I'm looking for personal experiences with these options, or feedback of any sort. Thank you inadvance! 

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Anonymous's picture
Anonymous
Replies 9
Last reply 8/4/2017 - 10:37am
Replies by: mrsaxde, geriakt, Bubbles, kaileetutt, Anonymous

 Questions about Clinical Trials:

  Are the meds given in trials no charge?

  Are the labs and doctor visits given no charge and what about any scans the patient may need?

  Thanks for any information anyone can give!

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Enid Weiss's picture
Replies 2
Last reply 8/2/2017 - 8:43pm
Replies by: Enid Weiss, Ed Williams

I am going to start the Checkmate CMP-001 clinical trial in about two weeks. I am curious to know if anyone else on this board is participating in this trial as well, and has any thoughts/comments/feelings about it.  Thanks!

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mrsaxde's picture
Replies 5
Last reply 8/5/2017 - 8:08pm
Replies by: Linny, mrsaxde, Ed Williams

Hi Everybody!

Well, I had my 4th infusion in the Opdivo/BMS-986016 combo trial. I still feel fine, but this time I ran across what could be a developing issue.

My bloodwork has always been good, through ipi and 1.5 years of Keytruda. But my lipase level has been on the rise since I started infusions in this trial. Yesterday it was double what it was two weeks ago. It's still not what they consider "extremely high" and Dr. Sharfman signed off on the treatment. We'll see what happens when my next bloodwork rolls around in two weeks.

My first scans since starting the trial come up on August 11. I'm still feeling good and experiencing no ill effects whatsoever. I'll have a report when I get the results of the scans.

-Bill

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iskitwo's picture
Replies 2
Last reply 8/2/2017 - 7:36pm
Replies by: geriakt, jennunicorn

I was DX with Stage 3A melanoma last year in November. After talking with Melanoma Specialist (a couple of options)  I decided to watch and scan every 3 months. Now 9 months in to this journey the insurance has decided that scan for stages 2b to 3b are only necessary every 6 months. I am feeling very frustrated because I may have chosen a different course of treatment had I known that the insurance got to decide when I get scans rather than my doctor.  Is anyone else having these issues? any advice? I am currently using my local melanoma oncologist....would I get better results using my MD Anderson Team? I had been trying to stay close to home for scans and only using MD if something came up.

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Scooby123's picture
Replies 4
Last reply 8/2/2017 - 8:23pm

Hi all , hope you are as well has can be. I am due to start Keydruda Monday had my bloods done at my GP which I have had for last 2 years checking various things one is thyroid. Well it cam back out but doctor said re do in 3 months time again. I told her I was starting treatment and it could effect your thyroid but cannot believe all been spot on till now what a time to play up before treatment starts. 

 

Anyone on on thyroid treatment and taking immunatherapy , how coped with it.

 

Thanks

Scooby❤️

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