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 0

If melanoma was on the lower lig which lymph nodes it will usually transmit for? Is it in groin area? Or it could be behind the knee? and what they usually feel like?

Thankyou for reading

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CHD's picture
Replies 3
Last reply 2/25/2017 - 10:58am
Replies by: CHD, Bubbles, UBContributor

Just wondering, got my labs back yesterday and melanoma doc said all OK but platelets were on the high (438).  Said just something to be watched and will repeat labs in a few months.  I figure if it was worrisome, she would not be willing to wait a few months to repeat.  But knowing there CAN be a link between high platelets and cancer recurrence, decided to come here and ask how common it is here to have elevated platelets as part of a melanoma diagnosis.

Any input welcome.

I am one of the mucosal melanoma survivors, 3, almost 4 years out from initial diagnosis, clear PET CT last year.  Try not to worry where there is no reason.  Still whenever anything unusual happens, my mind does race.

Cheri

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Its crazy how stage 4 has a way of moving the goalposts as to what's good news and whats not. I'm currently stage 4C, but have had a good rersponse to PD-1. Has anyone had any experience with trying something new after achieving "stable disease"? I've been pretty lucky (and feel healthy still!), but some stubborn mets remain -- has anyone tried and been able to get radiation or something along those lines at a similar point in time? I really don't like the idea of just being passive while PD-1 fights ther mel to a stalemate. I'm hoping to have a serious discussion about surgery with my doctor at some point, but don't think that's an option at present. 

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Anonymous's picture
Replies 4
Last reply 2/25/2017 - 1:35am
Replies by: Anonymous, Polymath, stevenallenschwartz

Its crazy how stage 4 has a way of moving the goalposts as to what's good news and whats not. I'm currently stage 4C, but have had a good rersponse to PD-1. Has anyone had any experience with trying something new after achieving "stable disease"? I've been pretty lucky (and feel healthy still!), but some stubborn mets remain -- has anyone tried and been able to get radiation or something along those lines at a similar point in time? I really don't like the idea of just being passive while PD-1 fights ther mel to a stalemate. I'm hoping to have a serious discussion about surgery with my doctor at some point, but don't think that's an option at present. 

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casagrayson's picture
Replies 1
Last reply 2/24/2017 - 1:36pm
Replies by: Anonymous

I posted a link to a picture of a very ugly lesion on my husband's back in January.  
http://s102.photobucket.com/user/casagrayson/media/fullsizeoutput_328c.j...

He went to the dermatologist on the 9th and had it biopsied.  Against my wishes, doc did a shave biopsy, saying that he wanted to remove all of the lesion above the skin level.  Doc noted to rule out BCC/SCC on the visit report.  

In-house dermathologist made the following report:

Gross description:
Received in formalin is a 1.2 x1.2 x 0.5 cm tan-gray fragment of skin.  Bisected and submitted in toto.

Pathologic Diagnosis:
Invasive Squamous Cell Carcinoma, Keratoacanthoma type

We went back yesterday for a Mohs procedure.  Here is the visit report:


Indications for surgery:  Poorly defined margins, aggressive pathology

Final defect measured 2.0cm x 1.5cm and extended to the fat.  Scarring was present at this stage.

 

So, here's my question.  Husband has had two prior melanomas.  There are instances in the literature of nodular melanomas being misdiagnosed as SCC, Karatoacanthoma.  Should this specimen have been stained for S-100?  Should someone have mentioned checking lymph nodes (even if it is SCC)?  Am I being too paranoid here?  The depth of this lesion really worries me.  

Strength and Courage,

Susan

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marta010's picture
Replies 6
Last reply 2/24/2017 - 11:28pm

After 5 tremondously difficult years, my husband FINALLY is responding to treatment!  His latest PET/CT scan showed a significant reduction in the tumor activity in his cervical lymph nodes and minor reduction in his periportal and portacaval nodes.  Better yet is that his brain MRI showed stability with no new tumors.  His last Keytruda infusion was in July 2017 - had to take a break due to a sudden brain edema event that required a craniotomy and Gamma Knife.  Currently, he's continues to take Dabranib - we hope to discontinue that after his next scans in 3 months if the response continues.  His quality of life still is hampered by joint pain in the hips and knees which limits his mobility.  Would love to know what others are taking to mitigate this side effect.  Thanks.

Ann

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Dear MPIP Community:

FDA's Oncologic Drugs Advisory Committee (ODAC) will meet very soon to discuss an investigational new melanoma drug. This meeting will include an opportunity for NRAS mutant patients (and caregivers of those patients) to speak to the committee about the importance of new treatment options in metastatic melanoma. The FDA also allows letters to be written. We encourage you to get involved the best way you can.

If either of these opportunities would be of interest to you, please email me directly at education@melanoma.org. Once the FDA provides a date for the meeting, we'll know more details on both the meeting and the letter writing opportunity, so stay tuned.

Thank you,

Shelby - MRF

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Hriggenbach's picture
Replies 7
Last reply 2/23/2017 - 11:30pm
Replies by: Anonymous, Hriggenbach, jennunicorn, Ed Williams, Hukill

I'm 3c and going to be starting ipi 3/16. My dr indicated certain side effects tend to lead better outcome of course I didn't ask her what those were and I can't find anything stating that on the internet I was hoping someone might know 

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Replies by: Mat, Anonymous, brendon, Lddaughter, J.bun, debwray, jennunicorn

Hello, 

We are new to this whole stage 4 diagnosis and we are desperate to start a treatment. A little back story, my mom got sick at the beginning of January. After an initial CT and U/S they said she has spots and wanted a liver biopsy. The liver biopsy identified our cancer was Melanoma. She has it heavily in her liver and small spots on her adrenal gland, kidney, and 2 small spots on her lungs. Good news, the brain is clear. The biopsy was sent back for mutation diagnosis but they said we won't get that until the end of next week or 2 weeks still. We are working to set up a referral to a great university department but just feel like there is nothing we can do until we get the mutation results. Is this typical to feel like you are in limbo before treatment or is there something we should be pushing for? We keep hearing that Melanoma is unlike any other cancer so reading posts from this site have been helpful! She lost a lot of energy at the beginning so we are working on diet and rest to start getting strength back. I feel slightly helpless so I can only imagine how she is feeling right now. 

 

Thank you for reading.

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zfishberg's picture
Replies 1
Last reply 2/23/2017 - 9:53pm
Replies by: Judy Steven's wife

My husband has stage 4 melanoma with multiple lesions in  the head.

He had craniotomy in October, Gamma Knife treatment in December and was on Mek/Taff combo for 3 month.

We had to discontinue the combo because he developed very high fever and chills

started on Keytruda last week.

the MRI in December showed good progress - most lesions decreased in size.

but the second MRI in February showed  3 new lesions, so waiting for the next Gamma Knife procedure.

just a couple days ago he started feeling some kind of spasms in the face , back of head and radiating to the neck area.

the spasms are short in duration - less than 1 min. - and do not cause any changes in facial expression.

does anybody experienced this kind of spasms?

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My husband has stage 4 melanoma with multiple lesions in  the head.

He had craniotomy in October, Gamma Knife treatment in December and was on Mek/Taff combo for 3 month.

We had to discontinue the combo because he developed very high fever and chills

started on Keytruda last week.

the MRI in December showed good progress - most lesions decreased in size.

but the second MRI in February showed  3 new lesions, so waiting for the next Gamma Knife procedure.

just a couple days ago he started feeling some kind of spasms in the face , back of head and radiating to the neck area.

the spasms are short in duration - less than 1 min. - and do not cause any changes in facial expression.

does anybody experienced this kind of spasms?

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keepthefaith11's picture
Replies 15
Last reply 2/25/2017 - 10:58am

Quick background. My dad was diagnosed with stage 4 melanoma back in July. He had 13 tumors in his brain which were discovered because of the seizure he suffered.

He went through whole brain radiation, which was the only treatment they would do in his home of Sweden. They only do gamma knife on four or fewer tumors. I was firmly against this but we were left with no choice. Two months after diagnosis he had another seizure and two months after that yet another one.

He got through five infusions of opdivo before developing diarrhea and it had to be discontinued. In December he got really ill with the flu and was hospitalized. Ever since then he has been deteriorating. Last week he started running a super high fever and his blood pressure plummeted and pulse went up to 180. He was rushed to the emergency room and they suspected it could be sepsis. They are still not sure if it were but either way he was in bad shape. He came back from that and it's stable now.

His overall condition is now to the point where he is unable to move, sleeps most of the time, and it's pretty much in a daze most of the time when he's awake. He does have moments where he is completely on and will respond clearly and talk. It is like he drifts in and out of awareness.

This is mind-boggling to the doctors since the latest pet scan and MRI shows disappearance of two lymph nodes in the abdomen and brain scan shows disappearance of many tumors and 50% shrinkage of the others. He has been on TAF/MEK the past six weeks. We are all wondering how he can be acting so completely sick when the cancer has gotten so much better. They are discontinuing the anti-seizure medication to see if that could be part of it. They have done all tests on pituitary and thyroid function as well as Vitamin deficiencies.

The latest brain scan did show damage in the white matter of the brain and it looks like fluid is not flowing properly. So today he ended up having a spinal tap and pressure check of the brain. We have not heard back yet. They will put in a shunt if the tests show issues in that area.

The doctor is talking about possible brain damage from immunotherapy which to me sounds completely unrealistic. Looking up the odds of the severity he is experiencing being from immunotherapy it's pretty much unheard of from what I've read.

What do you guys think? Has anybody heard of white matter damage in the brain with brain tumors? Or what could be causing this?

It is so incredible that he has responded so well to the cancer treatment and cancer is not our worry at this point. All the other issues are. We would be on cloud nine with these kind of scans if it weren't for the fact that he pretty much acts like a physically handicapped person with dementia.

Any help will be appreciated!

Annie

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BrianP's picture
Replies 12
Last reply 2/24/2017 - 7:40pm

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Bmine102793's picture
Replies 4
Last reply 2/23/2017 - 4:58pm
Replies by: Hukill, Cathy M, Anonymous

Fiance has stage 3A melanoma and will start yervoy in april. Once treatment start he will use short term disability through work on the paper work it states that he can only work 40 hrs a week with 40% taken from each check so financially we are screwed. Is there any other help out there? Im unable to work due to my daughter having an immune deficiency so we're at a loss any enough would be appreciated

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Get real hugs and encouragement from thousands of other melanoma patients, caregivers and their loved ones.  Come April 23rd  to  www.safefromthesun.org

 

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