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.

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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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Hello all:

 

My husband has stage three c melanoma and is just reocvering from surgery, lymph nodes, tumor in the neck and parotid gland removal.

 

He has been offered the durg Ippy and a new vaccine called Mavis.

Is there anyone on this site taking Mavis?

 

Thank you.

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Hello all:

 

My husband has stage three c melanoma and is just reocvering from surgery, lymph nodes, tumor in the neck and parotid gland removal.

 

He has been offered the durg Ippy and a new vaccine called Mavis.

Is there anyone on this site taking Mavis?

 

Thank you.

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mama1960's picture
Replies 2
Last reply 6/27/2013 - 9:51am
Replies by: Tina D, POW

Bone scan a month ago showed mets in bone. Started Zelbroff. Have had fractures in both arms and right groin. Doc says cancer is too far ahead to count on Zel. Had another bone scan Tuesday, lots more mets. Going on five days of intense chemo here in the hospital starting tomorrow. Drugs are Velban, DTIC, and Platinol. Says it was created at MD Anderson. Anyone with experience?

It is what it is.

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flvermonter's picture
Replies 3
Last reply 6/21/2013 - 12:55am

Clarification today from Dr Zager.  My husband has 2 appointments at Moffitt next week.  One is with Dr Dilling, Thorasic Onc and that one is for the lung cancer.  The other  is Dr Torrex-Roca, Radiation Onc.  for the Melanoma. 

 

Any thoughts or experience in regard to how they treat and coordinate the two cancer treatements?

Hugs to all, patients and care givers.

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Snickers60's picture
Replies 3
Last reply 6/27/2013 - 9:55am
Replies by: Tina D, Owl, aldakota22

Hello - long time no talk..............   

I wanted to give you a quick update on Wayne  - especially for those on ZEL ! 

Last Thursday was a devastating day for Wayne and me.   We learned that while Zel is still working great on his body - (still clean one year later) - he had 2 brain mets and a meningioma (benign)    They will be doing Gamma Knife next Friday - the 28th at MDA !    To say that learning this news the day before Wayne's one year NED mark was hard is an understatement.   As many of you know, learning you have brain mets is a different and devastating kind of animal.  However, we are beginning to get our berrings, put our gloves back on, and FIGHT this beast like never before.  We head back next Thursday for the surgery.  

We were planning on going out to dinner THAT night to celebrate the ONE YEAR NED MARK !    :-((((((   How sad is that.......yes, it was SAD !   I cried my eyeballs out for days instead. 

They are talking about possibly trying him on Temodar, WITH the ZEL, after the Gamma Knife.

All prayers would be much appreciated.

Nancy (devoted wife of 3 X Warrior Wayne) 

We are anxious to hear from Dick_K ?    Anyone heard from him lately ?   

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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aldakota22's picture
Replies 16
Last reply 6/27/2013 - 10:00am

Had visit with Dr. Anna Pavlick yesterday and got results of Cat Scans & MRI  from 6/15/13.On the plus side Iron count is back to normal after being on the low side early this year.Just had to  take iron supplement..Also gained 4 pounds .First time in over 2 years after remaining at same weight.Appetite has always been great.All in all the results were awesome."Z" has been doing its job for the most part as there is no evidence of disease from the head down.Still have a few brain mets with the largest being  1.2 x 1.1  x  0.4  cm. All others are substancially smaller and measured in mm.They all remain stable when compared to MRI of  2/20/13 and  4/13/13. No new ones from MRI of Feb. 2013.Will have MRI again in two months. As i have no problems stemming from these mets she is of the opinion that this is something I can actually live with.Feels that any  Gamma knife treatment at this point is not reccomended.Still taking "Z" for over 21 months.Plan  B if needed will be to switch to Dabrafenib expected to be available the first week of July.Known to  work as a effective a "Z" to long time users as myself.Want everyone to know out there that after what felt like a Death Sentence  in early 2011, now feels  with God  & modern medicine I now have a Life Sentence.To all my fellow warriors in our unwanted battle with melanoma do everything you can to Beat the Beast..The research is advancing toward a cure or at least a treatment as a chronic condition.Life is good.Keeping all my fellow warriors in my prayers.Looking forward when all posts here will be ones of hope and happiness.I feel my good results have been cause of God, modern medicine, my PMA and of course the love and support of my honey and family. Also know that all here are wishing me well also. Thank you.      Al

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Hi,
My father who (has stage 4) has just had his first dose of treatment in a PD-1 vs. Dacarbazine clinical trial sponsored by BMS. He reports that he is feeling relatively good after the first round and hasn't noticed any side effects as yet.

During his first round of treatment there were two sessions, the first one he either received placebo/ pd-1 med, and the second one he either received placebo / Dacarbazine. During the first session he felt a sensation down his right leg which lasted throughout the administration time and could taste a slight sweetness. During the second round (2 hours later) he felt a slight pressure when the drug was administered but this didn't last very long. At the end of the entire session we noticed his veins near the site of injection had swelled slightly, but this disappeared shortly after ice was applied.

We were wondering if there are any signs that could indicate which treatment he could be receiving. I've heard and read that Dacarbazine causes arm pain during treatment and after- does anyone know if this is relatively common, whether the sensation during treatment is obvious and whether these effects occur even during the first treatment?

Unfortunately the side effects for both treatments are relatively similar so it would be good to get an insight on what others may have experienced. At the end if the day, we just hope whatever he receives is going to help him.

Thanks for reading,
Julia

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