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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Tennisgrl's picture
Replies 1
Last reply 6/24/2013 - 4:52pm
Replies by: POW

Does none have available treatment after metastasis of brain is found?

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Does none have available treatment after metastasis of brain is found?

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HelenK1's picture
Replies 4
Last reply 6/24/2013 - 2:44pm
Replies by: DeniseK, Johnfdc7, fairlinda

Both these drugs, Tafinlar (dabrafenib) and Mekinist (trametinib), are used in clinical trials, and each has received FDA approval to be used separately, and not in combination.  Would anyone know if either one or both can be used during whole brain radiation treatments?

Is Yervoy the only drug that one can take for systemic treatment while undergoing radiation?

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mamabet's picture
Replies 1
Last reply 6/24/2013 - 1:27pm
Replies by: DonW

Just wondering poster's thoughts on this subject. Are brisk/non-brisk lymphocytes predictive of relapse/recurrence/metastasis?

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Brendan's picture
Replies 3
Last reply 6/23/2013 - 11:44pm
Replies by: aldakota22, Brendan, Anonymous

 

Hi Everyone,
 
I am back in the hospital and craniotomy #2 is scheduled for Monday.  I will get a chest, abdomen, pelvis CT scan tomorrow (Sat) to see if I have any mets below the neck.  As of now, my brain met recurrence is the only known met in my body.
 
My med onc (who has not yet talked to my neurosurgeon or rad onc) mentioned the possibility of a gliadel wafer, a treatment primarily used for gliomas.  I have just started to research, and it appears that WBR follows the wafer and I would like to hold off on the WBR if possible.  I have not yet tried temodar, maintenance ipi was discussed, and so was the potential for PD-1 in a couple months.
 
My first brain met was removed through craniotomy in Nov, and the recurrence came back in five months so, as always, timing is everything.
 
Does anyone have any experience with these wafers?  Thanks for your help.
 
Brendan

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Tennisgrl's picture
Replies 6
Last reply 6/23/2013 - 8:44pm

I have 19 small mets tumors in my brain. I had the largest tumor in my brain removed and will begin whole head radiation in a few weeks. Any advice regarding treatments appreciated

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Chris123's picture
Replies 12
Last reply 6/23/2013 - 7:50pm

 Recently a tumor has been found on my husband’s Iliac (pelvis bone) for which the biopsy results determined to be Stage 4 Metastatic Melanoma.  For treatment, he was provided the following two options by two different oncologists:

Option A:  Start with Radiation Therapy to reduce the size of the tumor in conjunction with Yervoy Treatments.  In the event this plan is not effective, proceed with the Merck Anti PD – 1 Clinical Trial.

Option A was suggested to initially provide for a reduction in the size of the tumor, therefore, reducing the pain and the risk of bone, muscle and or nerve damage as well as the fact that Yervoy has been proven to be effective.

Option B:  Start with the BMS Anti PD – 1 Clinical Trial and reserve Yervoy Treatments in conjunction with Radiation Therapy as a back-up plan.

Option B was suggested because it is providing interesting results and there is always a possibility that the clinical trial may close for which Anti PD-1 would no longer be available.

Please, your advice, input and or prior experiences with Yervoy vs Anti PD -1 would be truly appreciated.

THANK YOU! 

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Just wondering poster's thoughts on this subject. Are brisk/non-brisk lymphocytes predictive of relapse/recurrence/metastasis?

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sjl's picture
Replies 14
Last reply 6/23/2013 - 3:08pm

Thanks to all who have helped me over the past 13 months with my husband's melanoma.  It is with deep sorrow that I report that he passed away last Friday.  He fought a very brave fight, never compained, never gave up and had hope until the end.  His was a particularly aggressive form and there was no stopping the beast.  but through this board I became educated, learned about the different types of treatments and variations of melanoma and was able to discuss his situation with all of his medical team.  I was always amazed at the help and support I got here and by the courage of those of you who are fighting this thing.  My heart aches but I am wishing all of you the best.  With the new treatments coming out and the ongoing research it is my sincere hoope that this beast will be beaten down.

Susan, wife of Jim

 

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JerryfromFauq's picture
Replies 1
Last reply 6/23/2013 - 8:25am
Replies by: Linny
I'm me, not a statistic. Praying to not be one for years yet.

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DeniseK's picture
Replies 15
Last reply 6/22/2013 - 11:46pm

Hello Everyone,

The last couple of days have been really hard.  My PET came back with significant growth on existing tumor and several new lesions.  The report didn't get specific on all lesions just the larger ones which are in my lungs.  My MRI came back with 6 new mets.  I now have 7, they did SRS on the 2 big ones which were around 12mm.  The other 5 are at 1mm-5mm.  I found out the machine in Sacramento doesn't narrow down to a field smaller than 5mm so I am seeing a radiologist specialist in San Fran that Dr. Minor referred me to.  Hopefully we can zap the remaining mets and get me back to stable for 8 weeks to get into an Anti PD 1 trial.  I asked about them fast tracking the drug for FDA approval and Dr. Minor thinks it could still take a year.  I hope it's sooner for all of us who need it quickly.

I saw Dr. Minor in San Fran and he said it could be the Z stopped working but hard to tell since I was taking such a low dose.  I have now been on full dose for about a week.  The tumor on my arm appears to be getting smaller but I could be just wishful thinking, but it's not growing!!  

Dr. Minor recommended that I start IPI next week, the drug has been ordered and I will receive my first infusion next week some time.  Dr. Minor wants me to take 1/2 dose of Z while on IPI.  They're going to monitor my blood work closely

Here's where I have some questions.  My doctor in Sac said if this doesn't work we will probably be looking at hospice.  He asked me where I'd like to go, into a hospital or at home?  I totally lost it!!  I really hate my doctor for putting me through that at this time.  He feels like the IPI won't break the brain barrier and I can do SRS but the odds are I won't stay stable for 8 weeks to get into a trial.  He said he feels like it's a 10% chance this will work.  Dr. Minor didn't say any of this to me but my doctor said he discussed hopice with him because of the rate of growth of tumors.  

I've been reading stories on here where it appears people are far worse off than me and their doctors aren't giving up.  They are going on Temodar, the new BRAF or MEK inhibitors, Chemo, etc. I'm going back to see Dr. Minor on July 5th but the way my regular onc talked he feels like it's a waste of time.  I told my family to prepare for the worst, I cried my eyes out yesterday, so much so my eyes were swollen shut this morning.  Now I feel like my doctor is just not informed on what is going on in the Melanoma world of treatments.  I have a call into Dr. Minor's office to ask him if he's ready to give up, because of they are giving up on me then I need another doctor who will fight just as hard as me!!!  

Has anyone gone through Z stopping?  If so what did you do next?  What were the results?  Did you have brain mets?  Trials?  Please share with me so I can get my hope back and stop crying!  

All my best,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Hi!

I had a mole on my knee  removed via punch biopsy 2 weeks ago.  I have the dermatopathology report, but have not yet heard from the dermatologist what it means.  Information online is confusing so I thought I'd ask here to see if someone had insight for me.  Here is the report:

"Desmoplastic dermal nevus-immunoreactive for Melan-A and S100 stains. Ki-67 stain low proliferation index". 

I had an atypical Spitz nevus 2 years ago, but that one was negative for S100 and Ki-67.  I had a re-excision procedure to ensure clear margins at that time.

  I'm just wondering if the above results would indicate further treatment (such as re-excisions) or do they mean a benign lesion?  I'm going to call the dermatologist on Monday, but any info in the meantime would be very appreciated.

Thanks,

Nicole

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Hi!

I had a mole on my knee  removed via punch biopsy 2 weeks ago.  I have the dermatopathology report, but have not yet heard from the dermatologist what it means.  Information online is confusing so I thought I'd ask here to see if someone had insight for me.  Here is the report:

"Desmoplastic dermal nevus-immunoreactive for Melan-A and S100 stains. Ki-67 stain low proliferation index". 

I had an atypical Spitz nevus 2 years ago, but that one was negative for S100 and Ki-67.  I had a re-excision procedure to ensure clear margins at that time.

  I'm just wondering if the above results would indicate further treatment (such as re-excisions) or do they mean a benign lesion?  I'm going to call the dermatologist on Monday, but any info in the meantime would be very appreciated.

Thanks,

Nicole

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johnno123's picture
Replies 1
Last reply 6/22/2013 - 5:50am
Replies by: Anonymous

Last week I received the following result from a melanoma:

Sections show SUPERFICIAL SPREADING MALIGNANT MELANOMA arising in sun damanged skin.
Type - Superficial spreading
Cell type - Epitheliod with moderate pleomorphism
Pigment - Focally prominent intracytoplasmic pigment
Ulceration - Nil
Clark level - 4.  Focal invasion of superficial reticular dermis
Breslow thickness - 0.5mm
Mitotic rate - <1 per mmA2
Tumour infiltrating lymphocytes - Nonbrisk
Established regression - Present
Perineural or lymphovascular invasion - Nil seen
Satellite deposits - Nil seen
Completeness of Excision - Minimun clearance is 2mm on a side margin, 5mm on an apical end and 6mm on deep plane

My doctor excised more tissue beyond the original excision and said that I don't have to see him again for 3 months.

I can't recall if he called it by any particular stage? I would however be interested to know what stage it is or was?

Can you tell that from the above information?  It was on my upper back.

Care about what others think and you will always be their prisoner. - Lao Tzu

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lrkg1234's picture
Replies 7
Last reply 6/21/2013 - 6:16pm
Replies by: Linny, Anonymous, tuneseo, clientcommon, jupeter41, POW

My husband Scott is doing the Dasatinib study here in Indianapolis for Stage IV mucosal melanoma, C-Kit positive. Primary is in the esophagus, inoperaable at this time.  He just had his first scan and I wanted to share the results and see if anyone else has experience with Dasatinib or is involved in a trial.

He was diagnosed August 7th and took about 5-6 weeks to get opinions and begin any type of treatment.  We don't know if there was any spread during this time while there was no treatment going on. 

He just had his first 6 week scan and there was a 14% growth in the tumor, but no new spreading.  It's hard to say whether the Dasatinib is working or not, because the baseline scan was about a month old. 

So, if the cancer had spread 30% while there was no treatment and then only now showed a 14% growth there was some reduction and progress.  It's not great news, but could be worse.  He is sticking with it another 6 weeks to see what happens before moving on to something else. 

His doctor is Leslie Fecher at IU health.  She was recommended by Dr. Sharfman at Johns Hopkins.  She was his understudy.  She's been great and is a melanoma specialist.  Just wanted to share in case someone else needs a doc and lives in the area.

We have no idea about spreading rate etc.  Any thoughts??

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