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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MelissaMW's picture
Replies 12
Last reply 1/10/2017 - 12:45pm

Hey guys, 

I was wondering if anyone can give me some feedback on a good Melanoma specialist in Ohio. So far I'm looking at Cincinnati Christ Hospital (Dr. Leming), Dr. Karim in Cincinnati as well as at the Cleveland Clinic Dr. Gastman. Any experience with any any of them? I was diagnosed with stage 1a Melanoma 2 weeks ago.

 

Thanks in advance and have a great weekend! 

 

Melissa 

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Carole K's picture
Replies 8
Last reply 1/10/2017 - 8:24am
Replies by: dodgedh2, Carole K, Rocco, DebbieH, SOLE, Anonymous

Hi Everyone,

Someone posted below asking if there are any long term survivors. Yes, there are several long term survivors .  I will post on my fb page and on the fb Melanoma pages asking them to come here to check in.  One is Kathie K, David from Wi, Debbie H, and there are more.  I will do my best to get them here.  They are all awesome people.  I saw Fen replied to your post as well as Janne.  Both are a huge source of information.  Hang in there..  

Love and Light

Carole K

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Bigguy58's picture
Replies 4
Last reply 1/10/2017 - 6:34am
Replies by: Bigguy58, Janner, snow white

Stage not determined yet. Clark level 3. Mole found on arm. No biopsy of sentinel lymph node yet. Unsure if needle or resection is best. Very worried, 58 years old. Was ready to retire early. Now unsure if future.

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Marksa2570's picture
Replies 3
Last reply 1/9/2017 - 7:24pm
Replies by: Anonymous, UBContributor, Treadlightly

Hello all,

I too am another new member to your group.   I'm fortunate to be coming in as a 1A but I have questions.  I grew up in the sun - former swimmer and lifeguard.  I'm 46 and Ive already had about 4 basal cells and about 3 atypical moles (all that required additional excision).   My dad has had melanoma twice so I'm always checking my skin out and I keep a close eye on whatever I can see. 

In November, I self-identified what ended up being a basal cell on my face. The dermatologist fought me about biopsying it but I nearly demanded her to do it and ended up needing Mohs.  Her Moh's surgeon couldnt do it for a couple months so I found another who was willing to remove it sooner.    He had to do a consultation before removing, so I asked him to do a full body scan while I was there.   He looked at my entire body and I put extra focus on those moles I am most concerned about.   There was one in particular on my bicep he studied for a bit but decided everything looked ok and nothing was removed.   

The moles continued to bother me so while doing the Mohs, I asked if he would cut off some moles when I got my stitiches out (mainly because I didnt like them) and he agreed.  We removed three - one came back as the melanoma, one severe atypical needing futher excision and the other was fine.   The melanoma is .21 mm, no ulceration and class III.    

I am fortunate it was found early and it was partially due to diligence but I also feel like it was really due to luck.  I knew he wouldnt remove 10  - so I had to pick my top 3 and that happened to be one of them.    

What concerns me is how do I know I dont have others that are melanoma (I read on here its rare to have multiple primaries - but doesnt seem unheard of)?   That mole was pretty unusual but it wasnt a classic nasty like you see photos of.   I've had multiple dermatoligist in the last year look at those moles and all said everything seemed fine.     I know this isnt an exact science and that is what scares me the most.    

I dont have a ton of moles.... maybe 20-25 total and part of me wants them all removed (or at least the 10 most concerning ones).    Now that I have melanoma, he has said that he would be willing to remove anything I request (he said I have a good eye for detecting bad ones!).     Does anyone have any thoughts on that?    Also... I found a mole-mapping app... does anyone use that?  

My WLE is Friday for the atypical and melanoma.    I'm also seeing a new dermatologist on Monday just to get a 2nd opinion.     

Sorry this post is so long.... I just have a lot of thoughts on my mind.  I am impressed with the kindness and bravery I have seen on here.    Any input would be welcomed.      

 

  

  

 

 

 

 

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stevenallenschwartz's picture
Replies 9
Last reply 1/9/2017 - 5:45pm

I was advised  January 2016 that I had stage 3c melonoma. They surgically removed the tumor from the back of my arm and 10 lymph nodes from my arm pit. I than had 4 infusions of yervoy. I had 1 petscan in July of 2016 that was clean and my recent petscan in December 2016 showed the return to my lungs and armpit. Dr. immediately put me on Keytruda and so far I have had 1 infusion. No side effects yet and going for my 2nd infusion next week? 

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landlover's picture
Replies 14
Last reply 1/9/2017 - 5:06pm

Along with many others here I am being treated with Ipi/Nivo combination.  I had my first dose 3 weeks ago and was due to have my second tomorrow.  

I was getting by with just some fatigue and a wandering itchy rash (taking claritin by day and benedryl at night as well as a prescription lotion) until a few days ago when I started having a bit of shortness of breath on exertion, pounding heart when climbing just one flight of stairs, having to rest while on a moderate hike, etc.   When I took my pulse and found my resting heart rate was 90 I decided I'd better call my oncologist.  

He told me to go directly to the emergency room as I live 2 hours away from U of M where I am treated.  They were concerned about my heart or the possibilty of pulmonary embolism among other things.  My heart and lungs were not the issue thankfully, but my thryoid levels were off the chart. I was diagnosed with thyroiditis, which means the immunotherapy drugs have inflammed my thyroid gland and the destroyed cells are leaking thyroid hormone into my body.  I was placed on a beta-blocker to slow my heart rate, and ultimately my thryoid may "burn out" leading to hypothryoidism and necessitating being on thyroid replacement.  I know that is not a huge deal and very doable compared to other issues that are seen with these drugs. 

I just wanted to share this in case anyone else has these symptoms to know to report it promptly.  I was not putting 2 and 2 together initally and just thought that it was due to the fatigue or being more out of shape.  It goes to show that any changes should be reported.  

I am going to U of M tomorrow for my oncolgy appointment and he will decide whether I can then have my 2nd infusion.  Many good thoughts and love to all that are fighting the good fight here.

Peggy

 

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AvaL's picture
Replies 16
Last reply 1/9/2017 - 2:39pm

Hi all,

I was wondering if I could have a bit of input regarding my hubbys prognosis. I know that melanoma is v.unpredictable, and each and every person's journey is different. There are many factors involved. But we're at the point where we feel we need to know a tough idea of prognosis, accept and move on as much as you can with this beast hanging over you!

He had a 2.3, superficial spreading non ulcerated MM. His SLNB upstaged him to 3a after micrometastasis was found (one deposit in one sentinel node measuring 0.5mm in diameter). All nodes were removed from left groin and all came back clear. 

his dermatologist does not provide a a rounded version of outlook but has painted a pretty dire perspective from the outset. To be honest we are probably more prone to a negative outlook 'prepare for the worst sort of attitude' I guess. Anyway I've been reading (can't seem to stop that!) and it seem he actually has quite a good progosis (possibly) given just one micrometastasis node, and non ulceration of primary. Hope it's ok to post this sort of question up?! Would really appreciate views x

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Dreaf01's picture
Replies 10
Last reply 1/9/2017 - 1:54pm
Replies by: Dreaf01, Janner, Ed Williams, jennunicorn, Anonymous

Hello everyone! First of all I want to send prayers and good vibes 2 everyone. Quick question, on 12/29 I had a SNB and WLE with 2 nodes removed frommy groin, both negative as well as clear margins. I follow up with my surg. Oncologist on the 16th. About 3 months ago I had a terrible tooth abscess that lead to severe facial and jaw swelling. After i had two teeth removed most of the swelling went down except a small lump on my jaw. When I press on the lump it moves around and sometimes feels like it disappears, but it always comes back. Should I be worried ? I do apologize if I sound crazy, i have become extremely anxious since this whole melanoma thing started.

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amybgg's picture
Replies 3
Last reply 1/9/2017 - 10:37am
Replies by: Anonymous, iskitwo, mjanssentx

Hello, I am a year and a half out from a melanoma diagnosis. I was fortuntate and caught it early. At the time of my diagnosis I lived in Kansas City. I loved my dermatologist and oncologist and even my plastic surgeon (I needed a skin graft). I have recently moved to the Dallas area and am a loss to find a dermatologist I like. I was referred to a doctor here by my dermatologist in KC. He's nice enough and seems competent, but seems more interested in chemical peels and botox. I don't even know where to begin in a city this big to find someone who is more focused on this side of things. I had an atypical mole removed this week. All I got was an email with lab results. I just feel like someone with my history needs a little bit more of a personal, compassionate touch. Also looking for someone who does skin imaging. I've been cleared by oncology, so just looking for an aggressive dermaotolgist.  Any advice is appreciated. TIA. 

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snow white's picture
Replies 6
Last reply 1/9/2017 - 12:36am

so with this new possible twist with.my Dad, I am now researching to see where this can be treated if it comes to.fruition. I have gone back and read a bunch of old posts about Lepto.  From what I gather MD Anderson is the only place treating this.  Am I right? I also noted that the orignal doc doing the treatment has now retired and the new go to doc is Isabella Glitza.  I don't know if you all remember, but Dad had a consult with Margolian at City of Hope and she wanted to put him on a Trial that what super hard core.  I can't remember off hand the exact treatment, i have it in my notes somewhere.  Dad ended up at Hoag with an oncologist that he absolutely loves and has taken great care of him so far, but as I mentioned before she is NOT a melanoma specialist (sidenote: his current oncologist DOES consult with Margolin about my Dad).  I tried to protest, but it did not work.  Both Dad and Mom feel comfortable with her.  Well now things may be changing.  I REALLY want Dad to see a Mel Specialist regularly, but he nor my mom cared for Margolins approach or bed side manner.  So, should I push for him to see a diffrent Mel specialist here locally or should I push for them to go to MD Anderson and get with a doc there?  

ANY AND ALL THOUGHTS ARE WELCOME.  I trust you all with your opinions.  

XO Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. On Opdivo. Receiving treatment @The Angeles Clinic

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snow white's picture
Replies 15
Last reply 1/9/2017 - 12:17am

Hi All,

Everything has been humming along. with Dad, in fact he was told that he can drive short distances.  

Yesterday, he went for an MRI and then met with his neuro surgeon.  They seemed positive when they met with him.  My Mom called me this morning and said she needed to talk.  She had been reading Dads latest report and she was very scared.  This is what the report says:

FINDINGS: The previosly seen numerous lesions with intrinsic high signal intensity and some contrast enhancement predom inating in the high subcortical bihemispheric regions are again identified, as are several small "dot" peel foci in the left mid frontal convexity.

There is no obvious new disease, progression of size in the pre existing lesions, or other acute pathology.

CONCLUSION:

Stable short interval appearance of multiple metastatic foci describled on the December 2 study, and one month later today.  The presence of several tiny peel foci suggests the possibility of leptomeningeal disease, cervical, thoracolumbar follow up studies can be done as indicated clinically.

What now?   The Leptomeningeal disease scares the crap out of me.  Please tell me there is hope here.

Jen

 

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. On Opdivo. Receiving treatment @The Angeles Clinic

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White wine was actually the only kind of alcohol with which an association with melanoma was discovered. Every drink of white wine per day was linked with a 13 percent increase in melanoma risk. And participants with an intake of 20 grams or more of white wine daily were 73 percent more likely to develop a melanoma on their torso. The risk was shown to be greater among women than men, probably because men are usually larger in size and can metabolize alcohol better. Surprisingly, no correlation between consumption of red wine, beer, or liquor and the likelihood of developing melanoma could be established.

read complete article at

https://jonbarron.org/cancer-alternative-cancer-therapies/white-wine-and...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/8/2017 - 4:12pm
Replies by: Treadlightly

I had a wle for a insitu mole on my back. Its been 3 weeks since surgery. I just had all the stitches removed and noticed a brown spot near the scar line about a mm or 2 away hard to tell. Before surgery i had a mole under this new spot about a few centimeters. Im wondering if after the wle was sewn back the mole moved higher up that was under it. Either way im having it removed friday. What do you guys think? Can melanoma grow that fast and do you think its a reoccurrance. Or the mole that was underneath it. Its flat and light brown, no bumps. Sorry i have anxiety and depression issues. Thank you

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Shaneswife's picture
Replies 2
Last reply 1/8/2017 - 7:48am
Replies by: MaPerny, Ange

Is there anything a person can do to control night sweats? Since hubby started the dabrafenib and tramentinib he's having awful night sweats.

Janis

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/8/2017 - 7:33am
Replies by: MaPerny, snow white

my husband has stage 4 maligant metatistic melanoma and dorment CLL ....

2mm in lung.... MDA started him on keytruda.... 3 weeks later, he had mild itching, a rash then purpura (bleeding under skin due to lowered platlets)  ... we were out of town and took him to the ER in Santa Fe... we had a wonderful oncologist who gave him IVIG which drastically improved his platlets and we returned home days later.... he warned us not to let the MDA oncologist take my husband off of keytruda as it will be his saving grace.... 

went to MDA for a follow up and the oncologist decided to remove my husband from keytruda without an indepth discussion and said the only other options were chemo and radiation....

we were devasted and are gonig to another large cancer center for a 2nd opinion.... 

has anyone else had platlet issues while on keytruda? and if so, did you oncologist pull the treatment? 

god bless all of you....cancer sucks but we will beat it!

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