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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I'm being treated at Vanderbilt and I've had some surprising news this week.  I met with the Medical Oncologist yesterday and discussed my options, which were IPI, Nivo if insurance would cover it or I got it for free, or waiting on a clinical trial where they will be testing Nivo versus Nivo + low dose IPI.  We decided it would be best to be proactive and check if insurance would cover the Nivo treatment, and I got a call today that they have approved it.

I know the Nivo + IPI combo has seen some buzz about being slightly better, but not knowing if I would even be accepted into the trial for 4 to 8 weeks (which is when my doctor expects it to start), when I could start Nivo right away seemed like a bad gamble to me.  

I wonder if anyone has any insight into anything I might be missing. 

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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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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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Maria C's picture
Replies 18
Last reply 8/4/2017 - 3:03pm

Hi fellow warriors - 

I am 7 months into a mucosal melanoma diagnosis that went from Stage III to Stage IV at the first set of scans after my initial surgery. It seems I keep falling into this "rare" category - not only having mucosal melanoma to begin with, but having the first mets in my brain (rather than liver, lung, bones). The first brain tumor was treated with gamma knife (they found 2 on the actual day of the procedure), then I began the nivo/ipi combo which sent me into the hospital within a week with the "rare" side effect of uveitis (retina detachment of both eyes). Months after that episode, I now have had all 4 combo infusions and another gamma knife procedure (an MRI found 2 and then a 3rd was found the day of the procedure).

On the BIG PLUS side, one lingering tumor in my pelvic area shrunk from 13 ml to 6 ml to now 3 ml (3 separate scans), the 5 brain tumors that were gamma-knifed are all in their death stages, and the latest MRI - taken after my 4th 2-drug combo infusion - shows NO NEW BRAIN TUMORS. So fingers crossed the immunotherapy is kicking in and controling the brain mets?

My question is, has anyone else on this board with brain mets also responded to the ipi-nivo comb with a similar result? I'm not clear about the trajectory of brain mets with melanoma - does it usually progress or does it sometimes go away by itself? In other words, can we be confident this is a response to the treatment?

I would also love to connect with anyone who also has a mucosal diagnosis....a search on this forum brings up only dated posts (latest were from 2013). 

Very grateful to find this community and am finding some much-needed inspiration - and reality check - as I read through all your thoughtful and honest posts. Thanks so much for sharing, all.

 

 

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/4/2017 - 1:48pm
Replies by: MelanomaMike, Ed Williams, Anonymous, Bubbles

Hello I am new to this group, diagnosed Apr 25. I had a Wide excision mid back and a SLNB in both arms on June 30.  Ulcerated 7.75mm superficial spreading.  One lymph node on each side was positive with less than 5 %. My doctor is recommending a CLND.  I am having a hard time with this decision.  My MRI of my brain and CT scan of my lungs and stomach area are clear.  Any insight from others in my situation would be much appreciated.

 

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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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GAngel's picture
Replies 11
Last reply 8/4/2017 - 2:44am

Dear Karen,

It's been weighing heavy on my heart that you may not have seen my reply back to you on a previous post of yours wherein you stated that Tafinlar is dabrafenib and mekinist combined.  I want to make sure that you know that you have the wrong information as Taflinar is NOT the two combined.  Please read my reply to you regarding this subject which I pasted below.  I just wanted you to realize that you are not presently taking the combo if you are only taking Tafinlar and you should contact your oncologist for further clarification and so that you can start taking the Mekinist (trametinib) with the Tafinlar (dabrafenib), if that was your intention.

"Tafinlar is not dabrafenib and mekinist combined. These are absolutely two separate drugs. Dabrafenib is the scientific/generic name for the drug being sold by GlaxoSmithKline under the trademark name of Tafinlar and Trametinib is the scientific/generic name being sold under the trademark name of Mekinist. These drugs can only be dispensed through a specialty pharmacy and will come separately and the Mekinist(Trametinib) is delivered in a cold package and MUST always be refrigerated. Although I have heard of at least one person who was unable to get their insurance to pay for the combo because of the lack of FDA approval our insurance covered both drugs and so have many other insurances, apparently.  At least give it a try as your doctor is not prohibited from prescribing both drugs.  I may be wrong, however, I believe that obtaining FDA approval of the combo will help prevent any insurance coverage issues." 

Wishing you all the best!

Love and blessing to you and yours!

Gina 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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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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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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eric w's picture
Replies 19
Last reply 8/3/2017 - 5:19pm

Just wanted to say happy bday to someone who has helped me as well as many many more folks in the mel world!! Hope you have a great day C!!!

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Jacquie's picture
Replies 3
Last reply 8/3/2017 - 4:39pm
Replies by: Becky, Cindyco, adrianc

Has anyone else had a primary Melonoma on their Eustachian tube? The melanoma had also metastisied to two lymph nodes in my neck. The melanoma was not pigmented, is this unusual?

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Len777's picture
Replies 4
Last reply 8/3/2017 - 2:14pm
Replies by: Len777, SABKLYN

Hi everyone, I am a 33 year old guy with pretty fair skin and several moles, none of which have ever appeared problematic. Just a few days ago I noticed sudden change in a mole on my forearm that had been there for as long as I could remember (I just found a pic showing it from 2007). The mole is small (about 3mm x 2mm), an oval shape with pretty clear borders. It's always been a uniform chocolate brown color but suddenly got really dark/blackish areas in the center. The mole (including the new dark spots) is flat. I look at this mole every day as it's not far above where I wear my watch, so I'm confident I wouldn't have missed it if this change was happening a while ago.

I promptly scheduled an appointment to have a dermatologist look at it this coming Monday, but am having a lot of anxiety over it. In the meantime, I wanted to get opinions, from people who know more about melanoma than I do, about:

--If this were melanoma and the changes appeared that quickly, would that mean it's more likely to be in situ/early?

--Is there anything I should be sure to say/request when I see the doctor? Do you think she might biopsy this mole at this first examination, and if so would it likely be a punch procedure based on the size/description.

I had a really bad cancer scare last year (not melanoma), and know I'm so worried about this suddenly changed mole.

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BethL's picture
Replies 6
Last reply 8/3/2017 - 9:38am
Replies by: laulamb, Anonymous, BethL, adrianc, Newmanbell

Hello all! I appreciate everyone who has posted here - all the posts have been so much help to me over the past 2 months from diagnosis to now.

History: end of June had WLE (back) and had a SNB with one of 3 nodes removed testing positive.  

I am currently at a point where I have to decide on adjuvant therapy- between doing the Yervoy therapy or watching with 3 month scans and derm appts.  Because I have a  low WBC generally, the dr and I have ruled out the only other available option- interferon.

I am lucky to live in Boston with the great care of Dana Farber so I know I can't really make a bad choice.  I just seemed to be in analysis paralysis!  I have friends in cancer field who say immunotherapy is the way to go, but looks to me that it would only give me 20% reduction in chance of recurrence. And 25% chance of getting side effects which will put me in hospital? Numbers seem to point against doing it.  

But is watching and waiting just putting me at bigger risk of the cancer - already activated from surgery -spreading?

i can't get the Dr to just give me a decision- wouldn't that be easy?! 

Any input you have appreciated either way. I have one more week to decide.  

Best to everyone here!

beth

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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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