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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Greg - Kyles dad's picture
Replies 5
Last reply 6/27/2013 - 9:30am

I have not been on this board in some time - but always think of the daily struggles people go through with this beast.  Thought I would post something to give some hope.  Proud of my son working through his challenges.   http://hamptonroads.com/2013/06/chesapeake-weightlifter-rebounds-skin-cancer

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

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Replies by: Tina D, LindaR, Anonymous, Linny, DeniseK

Just this week I was diagnosed with amelanotic melanoma. All I know right now is that my tumor is 1.15 with no clean margins and a level 4. I am expecting to have surgery this week. As I try to wrap my mind around all of this, the information online is overwhelming. I just found this site and already it is helpful. The tumor is on my face near my ear. The plastic surgeon has told me part of my ear will need to be removed. This is so hard. Can anyone help me understand if amelanotic melanoma is more aggressive than other types? Has anyone had surgery on their face? Of course, I am afraid of how my face will look after surgery but mostly afraid of what the SLB will show. This is the first time I have ever posted on any site and it feel strange.

Linda

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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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Ali's picture
Replies 16
Last reply 6/27/2013 - 9:45am

I regret not being active on the board for a while.  Good to see you guys still fighting hard.

One year ago today they found 25 tumors in my brain.  Lots more around the body.  I had just finished IL-2.  We did IPI and Temodar.  I only got one dose of IPI, due to colitis.  It cleared my brain by the 12 week scans.

My brain is still clean.  We found a few new, very small tumors this spring.  A couple near my adrenal gland continued to grow (even after we radiated them this January).  They started hurting.  Pain pills kind of hurting.  We found a PD-1 trial I qualified for (Moffitt just started one for those of us with dose-limiting, stage 3 toxicities from IPI).  Within days of my first dose I was off my pain pills and could feel a difference in my axilla tumors.

I had my third dose this week.  I feel great.  I feel so very lucky to still be be here and still be fighting this disease.  I am so grateful for the chance to try antiPD-1.  My prayer from the beginning was that I would be able to try everything.  To not let my kids wonder if something else would have worked.  It is always humbling to have a prayer answered.

I hope and pray for the best outcomes for my fellow warriors.  This has been a great year for melanoma research, let's see that translate into a good year for us with the disease as well!!  Keep up the good fight!

Ali

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mertsal61's picture
Replies 2
Last reply 6/27/2013 - 4:00pm
Replies by: mertsal61, POW

hi , i found this website while searching this disease.I want to talk about my dad.He is 53 years.His lung all covered small something lentil and he has oxygen problem(Sa02).He is always using oxygen(15 liter per hour).We live in Turkey.He is always coughing since February.Then he decided to go hospital.After some examination nothing found.Then he went on PET-CT but PET-CT's results are clean.Then doctors decided to lung biopsy for diagnostics.My dad had an surgery , they took small part from his lung.After the pathology report, it says malign melanoma.But my dad went too bad after surgery.His Sa02 about 88-92 with mask but theese value decreasing fastly without oxygen.Therefore after surgery infection was detected his left lung(after 2 days later surgery).Now he is taking antibiotics for infection also his breathing went so badly. And his lung all covered small lesions so he has seriously breathe problem.I heared yervoy and zelboraf drugs but they are too expensive.Guys, please understand me.I tried of crying and doing nothing.What can i do?Help me, i begging you.

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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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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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Richard_K's picture
Replies 7
Last reply 6/27/2013 - 9:48am

Apologies for being absent for the past month, I had serious computer and e-mail problems.  As to Zelboraf, I’m still on it and closing in on forty months.  Only real problems are sun sensitivity and some discomfort in left leg and foot.  Bilirubin goes up and down but if I am sure to keep hydrated, it seems to be under control.

My wife and I just returned from Barcelona Spain where I was invited to speak about my Zelboraf experience at the Roche Global Research and Early Development conference; quite a thrill.

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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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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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