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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guynamedbilly's picture
Replies 1
Last reply 8/23/2017 - 9:27am

I had my first Nivo injection thursday and have not had any side effects at all.  I was nervous about it, which is nothing new since my diagnosis over a month ago, and my blood pressure was up.  In the end, there was nothing to it.  On a previous post, some were curious how I got approved for Nivo at stage 3a, and I am following up.  

 

I asked my oncologist about how I was approved so quickly, and she said they have had a lot of patients approved for it over the past two weeks, and only one rejection.  She acted like a lot of it depended on the insurance claim agent they tallked to, so maybe Bluecross is just especially good in this regard.  Either way I'm very happy and feel lucky to be near to Vanderbilt.  

 

If there is anyone needing this option, maybe now is a good time to get your doctor really trying to get it through insurance.  Good Luck

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Megara984's picture
Replies 4
Last reply 8/20/2017 - 12:18am

Hey all. I am new to this forum. My husband just turned 40 in July was just diagnosed with Stage 4 Melanoma (it's in his spleen, upper chest lymph nodes, and bones). He is going on his 3rd round of the Opdivo/Yervoy infusion. So far no crazy side effects, just fatigue. I guess my question is how long will it take for him to start feeling something? As in getting "better"? Or that it's working? The lymph nodes in his chest are causing him to cough... we've noticed it's not as bad a cough but it's still there (the cough has been going on since April). We've met with a radiologist and he wants to wait and see if the immuno works before trying anything. Also they want him to eat up to 2300 calories a day. We've ruled out milk and cold drinks since it tends to set off the coughing. Any suggestions will be appreciated. Thanks in advance for any words of encouragement and feedback.  We are both for the most part in a positive mindset... we just have questions. 

Again thanks in advance. 

 

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jazztubs's picture
Replies 1
Last reply 8/19/2017 - 10:54pm
Replies by: Bubbles

Greetings Community,

Well, it's been a ringer of a few weeks.  And a few years. 

Background:

-Diagnosed over 4 years ago, with a large bleeding mole on my head. 3.8 mm. Likely caused from immunosuppresents I was on for Crohn's disease.  Crohn's has not been active in over 10 years.

-Resected this area, with local wide excision.

-Multiple lymph node dissections, and the parotid gland removal. Spec of melanoma found in one node.

-1 year of high-dose interferon.

-"ALLEGEDLY" BRAF negative.

-Developed lung mets--needle biopsy confirmed: Did 6 cycles of high-dose IL-2.

-All lung mets either disappeared or stopped growing--2 year later, no issues in the lungs.

-Rewind a bit...December of 2015, had a seizure. Found 2 brain mets. Treated with Gamma Knife. All good,  spring of 2016, when one continued to swell/grow, etc. Had a craniotomy to remove it. Was paralyzed on my left side, but with therapy and with the swelling going down, got around 95% of function back. Still weak though on left leg...

-Since the surgery, I had a few small seizures.  Then, in December of 2016, emergency surgery, massive hematoma in area treated by Gamma Knife.

-More Gamma Knife afterwards, January 2017,new lesion found and treated, also treated surgical beds

-Another Craniotomy in May 2017 for area where hematoma was, as tumor grew back here--found this in follow-up MRI in April.  Easy in, easy out...recovered fast from this one.

-Intussusception found in colon, partial small blockage in June of 2017. Tumor found.  Small bowel resection--confirmed melanoma.

-MRI of Brain in July of 2017 shows new lesions in Brain--Recommended to have whole-brain radiation: declined recommendation for WBRT.

-Went to UPenn, across country. Started Ipi/Nivo, against wishes of West Coast docs who recommended WBRT (due to history of Crohns...)

-No problems with first dose of Ipi/Nivo.  HOWEVER, received word from another research center I visited for third opinion that they tested one of my tumor samples and it WAS BRAF POSITIVE.

So, here I am, with new news of BRAF.  Has anyone been tested for BRAF and came back negative and then later came back positive?  I was told primary site could come back negative and metastasis positive.  My big issue is that my expert doctor in melanoma (whom I have now left)  never reported to me that any other samples were indeed positive, and this eliminated treatment options over the past few years: treatment options that could have potentially avoided me having craniotomies and other treatments.  There were a total of 5 samples that were analyzed, but I don't know as of today which came back positive (I'm working on that now...).  Obviously, these are all "maybe" situations regarding what could have happened with treatment, but you can imagine my frustration.  I'm thrilled by the news of another treatment option with targeted therapy, especially with things being in dire straights right now, but not thrilled that a top-ranked expert in melanoma and immunotherapy did not share these results with me or even look at them after surgery/biopsy, especially when I was in regular contact with him. Then, he suggested WBRT which could have been a very ugly situation for the long term.  I'm 41 years old...One challenge is I live far from him in a small town, but I do visit him and also talk on the phone/email to--my local hospital is a part of his health system.

UGH.

I'm also curious about those who might have used targeted therapy with ipi/nivo, either before, during, or after the immunotherapy.

Would love to hear thoughts on doctor liability too, regarding what exactly is a doctors liability after each biopsy in informing a patient about BRAF, even if one came back negative at some point.  My file actually has indicators that there was a "partial" positive a few years ago, but no further testing was done.

Thanks everyone,

 

 

 

Benjamin

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/19/2017 - 4:23pm
Replies by: regansmom

Age 33 caucasion

Had a small(like some dabbed me with a sharpy marker) very black mole appear out of no where on the tip of my big toe. Its a small black circular non raised mole. Had it a couple months, it hasnt changed that i noticed but thought i would ask.

Thank you

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Anonymous's picture
Replies 2
Last reply 8/19/2017 - 1:50am
Replies by: Anonymous

A week ago I had a mole removed and biopsied. The doctor just called with the results "Atypical Intraepidermal Melanocytic Proliferation". She said I need to return for a deeper and wider incision. What exactly does this mean (is it already cancer/ how likely is it cancer?) and how soon should I schedule the appointment? 

 

Thank you! 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/18/2017 - 9:00pm
Replies by: adrianc, Ed Williams

Hi- stage 3b and have had wide excision, snb and clnd. Started yervoy in Jan. Stopped due to uveitis. Noticed an egg sized lump about 9inches from the primary (in arm near crook of elbow). Doppler ultrasound found a solid mass with internal and peripheral blood flow. The dr ordered PET, CT and MRI. No results yet. Looking for thoughts as to what this is likely to be. Thank you. 

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jc2dad's picture
Replies 14
Last reply 8/28/2017 - 12:13pm

5 nodes removed with primary tumor on August 7th. Primary was subungual on left middle finger. Amputation at middle knuckle. Tumor was ulcerated 7mm. Took 3 nodes from arm pit and 2 from near elbow. 2 of 3 from arm pit positive, both in elbow positive. One in armpit was a little over 1 mm tumor but capsulated.

Receiving all services at MD Anderson. I meet with oncologist, surgeon and team on the 25th to discuss removal of more nodes and treatment optioms.

BRAF V600 negative, MRI and CTs negative, no PET conducted.

Any advice on different options and pros and cons would be very appreciative. The nodes by the elbow showed very light cancer with 50 and 25 cells respectively.

Is wait and watch a good approach, should I have CLND if suggested, what targeted therapies are available?

Thanks in advance.

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regansmom's picture
Replies 4
Last reply 8/18/2017 - 5:18pm

Hello. I am having a wide excision on August 23rd to remove a melanoma from my right lower leg. It is on the calf, sitting, actually on the skin over the Achilles tendon. I am a senior and I live alone. I haven't seen the surgeon and I am wonderng if anyone has had experience with similar surgery in this area and what the recovery was like. My melanoma is .3 Breslow level and Clark level 3. The biopsy margins wre positive so not sure just how deep it actually is. Thank-you for your help.

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Newmanbell's picture
Replies 8
Last reply 8/18/2017 - 3:59pm

Hi all, my husband is Stage 3b, this is his first scan after starting yervoy 5 months or so ago.  He was only able to do 3 out of 4 treatments.  It has been a week and we still have not sceen doctor, can someone please help reading this?  We are not even sure exactly where these mets are in the chest.

Head and Neck:  There is no nodal hypermetablism in the neck.  Physiological update seen in the oropharynx, salivary glands and larynix.

Thorax:  There is no nodal hpermetabolism in the mediatinum.  There are no abnormal PET positive nodules in the lungs.  There has been resection of the right anxillary node, prior SUV 5,4.  There is a prevascular node with SUV 2.9, prior 4.5.  Index right hilar node has SUV 3.5 prior 6.0.  Left hilar node has SUV 3.5 prior 3.3.  There is a stable 3 mm pulmonary nodule in the left minor fixxure.

Abdomen and Pelvis:  There is no hypermetabolism in the retropentoneum or pelvic hains.  The liver and spleen are normal in size and physiological activity.  Again demonstrated is large 4.6 cm photopenic hepatic cyst.

Mulsculoskeletal - Marrow update is within normal range.

Impression:  When compared with PET/CT of 02/02/2017 there has been resection of the right auxillary nodes.  Less FDG update is demonstrated in mediastinal nodes when compared with prior examination.  There is no evidence of PET positive disease in the abdomen and pelvis.

 

Thank you in advance for helping us with this.  One question, is this a normal reduction in size with Yervoy?

 

Donna

 

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gregisblessed's picture
Replies 5
Last reply 8/17/2017 - 11:38pm

 Diagnosed with scalp (crown) melanoma, 1.65mm depth, no ulceration, December 2015. CT and PET were clear, SLNB resulted in removal and biopsy of 11 LN, all clear. Excision of scalp with clean margins (skin graft from thigh). No issues for several months, seeing my derm every three months. Last week I have felt more tired, a little dizzy and some headaches. I have been through a tremendous amount of stress as my much younger wife recently had a stroke at 46yoa. My blood pressure has probably been elevated quite a bit so perhaps I need to consider that as a source for some headaches.

Should I be concerned about brain mets and go to my oncologist? I suspect some have had scalp mel, had it excised and lived a normal life? Perhaps I shouldn't automatically assume I have brain tumors. I am stressed so I am sure that's not helping with symptoms. I had been trying to exercise and figure out my new normal. 

I aplogize for ranting.

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I had an infected sebaceous cyst (yet to be biopsies) while on pd-1, which I've had a fantastic response to. Has anyone had this too? How did your doctor handle it? 

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mrsaxde's picture
Replies 2
Last reply 8/21/2017 - 10:11pm
Replies by: mrsaxde, Anonymous

I got the results of my CT scan at the end of the first 45 day cycle of the anti-LAG-3/Opdivo combo trial yesterday. I'm going to classify the results as "mixed."

When evaluated using the RECIST 1.1 protocol I have been classified as having "stable disease." There are two "target" lesions. One grew by 7% and the other was unchanged, as measured using that protocol. So that fits the qualilfications for stable disease. But two other, "non-target" lesions were classified as " more prominent.

Looking at the standard radiologist report of the scan, there is currently no cancer in any of my organs, which of course is good news. The lung nodules that were killed by Keytruda are gone and nothing new has taken their place. But several lymph nodes in my chest are all larger. I am hoping that is due to something like t-cell infiltration. I didn't see Dr. Sharfman yesterday, I saw the nurse practitioner instead. And she told me that is certainly possible, and added that I am "still very early in the game."

So yesterday I received the first infusion in cycle 2. I have a ton of questions for Dr. Sharfman in two weeks, mainly how I should be feeling about these results. One bit of good news: my lipase has returned to normal. I guess I'll have a clearer picture of everything around the beginning of November.

-Bill

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Good morning,

A research firm has reached out to the MRF seeking input from advanced melanoma patients who have experienced gastrointestinal symptoms while on checkpoint-inhibitor therapy. Interested patients who are eligible and selected to participate in the one-time interview study will be compensated for their time. For more information about the study, please call Evidera and ask for Julia Ingram at 240.235.2502.

Sincerely,
Adam, MRF

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/17/2017 - 1:34pm
Replies by: Anonymous, SABKLYN

I don't know if it's the right place to post something like this but I'm really confused about this and want to put my mind at ease.
I have two scary moles removed before 6 months from my left leg and lower back. well, the results came back fine which final diagnosis says benign compound nevus with no cytoarchitectural atypia present. I was relified, but for the last month I'm feeling a little swelling in left leg. It's not obvious but my left knee feels fatter than than the right I'm really scared that the pathologist missed a melanoma and now it spread to my lymph nodes. Is it possible?. the two moles apperead during my pregnancy and were new. What I can do to be in the safe side?

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I wanted any input on this chemical known as Dioxin. Im a child of a Vietnam Veteran who was exposed to quite a bit of it, it was  knicknamed "Agent Orange", Agent Blue" Agent Pink" etc. because,  well, Agent because it was a "chemical" that produced an effect,  and the Orange Blue Green  Pink  etc.was the color of the particular "barrels"  it showed up in {randomly}...Just a thought...Mike

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