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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natasha's picture
Replies 5
Last reply 9/12/2012 - 2:51pm
Replies by: natasha, bron, lhaley

      I am very sorry for this question ,but - is it o'k to have freckles on genitalia?

I am very embarassed to ask ,but I did full body check (as I do every month0 AND CHECKED MY GENITALIA AS WELL.

I have couple of freckles in where.

I do not know is it new ones or not ,because I never checked that area.

My Doc is male. My next appointment is in October.

Can I ask male Doc to have a look?

I am sooo embarassed......

Please , give advice

Thank you

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FightingItinPA's picture
Replies 1
Last reply 9/8/2012 - 7:32am
Replies by: Anonymous

My husband started his 20 treatments of interferon on Tuesday.   One week done.    He has been so blessed with no bad reactions.   No nausea.   Some chills and muscle aches.   Tylenol is working for him.     I appreciated all of the insights people gave me when we were trying to make a decision on what to do.   We chose to do the chemo because we didn't want to be a year ahead, have the cancer reoccur, and then regret not choosing treatment.   My husband survived prostrate cancer 15 years ago and he is determined to survive this.   We just had our first grandchild a year ago and he wants to be around to see her grow up.    Good luck to all who are also facing the tough decision to undergo treatment or monitor the situation. 

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Anonymous's picture
Anonymous
Replies 0

Has anyone heard how the trail is going for the use of Ipi for Stage IIIA and Stage IIIB patients?

 

I am just wondering if the risk of reoccurance has gone down with these patients.

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jfro's picture
Replies 1
Last reply 9/7/2012 - 1:26pm
Replies by: Janner

Ok, Janner,

I stayed away until I had a nurse call me again. They had no idea I already received my path report and was attempting to explain it to me again before I spoke. She told me I have to get an excision because the mole was abnormal and they needed to find out what it is?? Does that make any sense? I challenged her by asking that a diagnosis was already written on the report and that doesn't make sense...blah..blah..

 

I'm sorry that I am bothering you again but it this is making my anxiety spin out of control. Thanks. :)

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JoshF's picture
Replies 2
Last reply 9/10/2012 - 8:25am
Replies by: LynnLuc, Janner

Ok...I can't take it anymore. I noticed a small soft bump on the back of my head.I noticed it a few weeks ago and it hasn't grown.  It's near the top of my head and I can only feel it when I run my finger in one direction. Otherwise you'd never know it was there. It's very soft and moves but of course gets the anxiety level up. Most people I ask think I'm crazy, then again they have never experienced melanoma. I have a derm appt in 2 weeks but wondering if anyone has ever experienced something similar. Wouldn't a melanoma tumor be hard and not move so easy? 

Let's work for better treatments....for a cure!!!!

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JoshF's picture
Replies 1
Last reply 9/8/2012 - 2:34pm
Replies by: o2bcheri

Ok...I can't take it anymore. I noticed a small soft bump on the back of my head.I noticed it a few weeks ago and it hasn't grown.  It's near the top of my head and I can only feel it when I run my finger in one direction. Otherwise you'd never know it was there. It's very soft and moves but of course gets the anxiety level up. Most people I ask think I'm crazy, then again they have never experienced melanoma. I have a derm appt in 2 weeks but wondering if anyone has ever experienced something similar. Wouldn't a melanoma tumor be hard and not move so easy? 

Let's work for better treatments....for a cure!!!!

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KCScott's picture
Replies 1
Last reply 9/7/2012 - 10:16pm
Replies by: Jamietk

As a 7-year malignant melanoma survivor, I know not all dermatologists are built the same. We are looking for a derm here in Kansas City who "gets it" and is aggressive based on my history.

Anyone have recommendations of good dermatologists for me and my family in the area? Thanks!

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tiger01010's picture
Replies 4
Last reply 9/7/2012 - 1:44pm
Replies by: tiger01010, Janner, dellriol

I noticed some moles on my torso and stomach the other day that looked odd to me.   That led me to investigate a little about moles, and that eventually led me to this website.  I read that I should investigate my entire body and look in places that are hard to see, like the back.

On my lower back is a mole.  It is alarming to me because of its size.  It measures 9mm in width.  Using the ABCDE guidelines, I knew that if the mole is bigger than maybe 5 or 6 mm I should let a dermatologist look at it.   The mole appeared to be pretty much symmetrical, clear borders, the color is brown throughout, and as far as elevation/evolving, it is elevated very slightly, and I have no idea if it's evolving since I have never even noticed it.  My wife says she is 99% sure it has always been there.  If that's the case, then I'm guessing it has grown in size, since I believe I would have noticed a 9-mm mole on my lower back; however, that isn't really logical on my part, since I cannot say for sure what the mole looked like in the past, and so have no idea it it's actually evolving.

I made an appointment with my dermatologist and saw him the next day.  This was 2 days ago.  I lifted up my shirt and he says, "That's a normal looking mole."  Basically, nothing to worry about.  Then he looked at my entire body, head to toe, and said all the moles he saw were normal.  He said that none of my moles, including the one I am worried about, looks atypical.

He said the only reason he would advise excising it and doing a biopsy is because I'm worried about it.  I asked him if he were to have this particular 9-mm mole on his own back, would he be wanting it excised from his own back, and he said no he wouldn't worry about it.

I asked about a punch biopsy.  I don't know the exact name of what he said he would do for my mole, but he said he would not be doing a punch biopsy.  What he described to me would be a big cut into the skin.  He said it would leave a scar.  Not worried that much about the scar, just trying to describe the procedure he would do on me if I decided that's what I want.  Based on what I've read here and elsewhere, it doesnt make sense that he would be wanting to do a real big excision, but that's what he said he would do if I opted to have it biopsied. 

I told him I wanted to think about it.  I am worried about this mole based on the size of it.  My dermatologist is not worried about this mole.

On one hand, I don't like the fact that I have a 9-mm diameter mole on my back.  On the other hand, I have a 71-year-old respected dermatologist who has seen thousands of moles say, "That mole is normal."  I do not want to do this procedure unless I really have to.  The dermatologist says the mole is normal and that if I want it excised and biopsied it would just be for my piece of mind.  He also said that he would not want it excised from his own back if it were him.

Here's my question:  I have take pictures of this mole.  Should I just mark this as the starting point to me doing regularly scheduled close monitoring and comparison of this mole and all the moles on my body?  And then if this mole, or any other mole CHANGES, only then go back to the Dr. and get it exicised and biopsied?

Or

Should I definitely have this Dr. remove it and biopsy it SOLEY based on the fact that it's 9mm in diameter?

I would appreciate any advice that anyone could give me.

Thank you.

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POW's picture
Replies 8
Last reply 9/10/2012 - 8:33am
Replies by: AllyNTAus, POW, lhaley, Anonymous

We just found out that my brother (stage IV with brain mets) did not respond to Zelboraf. He's back in the hospital with new brain tumors and edema. Because he received WBR, he does not qualify for any clinical trials. Does anybody know where we can find information about getting Dabrafenib on a compassionate use basis? Our oncologist is willing to look into it, but he doesn't know who to contact.

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Hi all! Have a quick question. I completed IPI treatment the first week in January. Side effects continued through March, but ebbed substantially. Yesterday, all these months later, I had effects as if I was in the middle of treatment. Couldn't keep my eyes open I became so sleepy, then really bad itching, and when I was asleep I even drooled! Is this normal? And does it mean the Mel is rearing it's ugly head again? I had scans last month and have been NED since March. Thanks for the input! Bless you all and keep fighting!!

I can do all things through Christ who strengthens me.

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Replies by: bron, Janner, EmilyandMike

Hello... i have just joined this MRF messageboard today. please be patient. i have never used one of these boards before. i will be clinical and brief.

Please excuse any spelling errors i am very stressed...

My daughter is 42 years old.

 Had melanoma removed by local doctor on 25.07.12 FROM the middle of her back between her shoulder blades.

Pathology results.

-superficial spreading melanoma.

-BRESLOW 2MM.

-CLARK Level 4.

-ulcerated-YES.

-mitotic rate  >5

I have done hours on the computer and worked out she would be

T2BN0M0

She was referred to an ONCOLOGY SURGEON who removed a large piece of skin from the original site to just below her right shoulder.

He also removed the lymph node under her right arm. (although he kept stating he did not need to as the results would be clear).

The surgeon would not tell us why he thought the results would be clear.

Pathology on the removed skin and lymph nodes are clear...

We had two visits with the surgeon. 1 prior to surgery and 1 after to get the results.

She is scheduled to have follow up visits every 4 months.

NO ONE will give us any further information. The surgeon stated there is a 20% chance the melanoma will come back. After being pressed he stated

it will come back in her organs and he based that on her high? mitotic rate. I had to ask three times to get that answer. It seems he does not want to discuss her case... this is frightening me as i think HE thinks she is a lost cause..... (and i dont frighten easily).

SEEMS WE MUST JUST SIT AND WAIT.

MY burning questions are.

-Does the melanoma ALWAYS come back with everyone with these pathology readings above or only some peoples.

-If it comes back and they find a tumor and need to operate, is it easier if she is normal weight.. (she is overweight).

-I phoned the melanoma unit at the hospitall and they state she does NOT need an oncologist unless her surgeon refers her. (the surgeon is NOT an oncologist). Is this correct.

-Why was he so sure the lymph node would be clear. Does he think the cancer has gone below the skin into the blood or tissue.

If anyone can help me i would appreciate it....

very kind regards from Bron (queensland australia)

PS is it ok to post on this board. i found this the best one so i joined.

 

 

 

 

 

 my mmy

 

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Hello... i have just joined this MRF messageboard today. please be patient. i have never used one of these boards before. i will be clinical and brief.

Please excuse any spelling errors i am very stressed...

My daughter is 42 years old.

 Had melanoma removed by local doctor on 25.07.12 FROM the middle of her back between her shoulder blades.

Pathology results.

-superficial spreading melanoma.

-BRESLOW 2MM.

-CLARK Level 4.

-ulcerated-YES.

-mitotic rate  >5

I have done hours on the computer and worked out she would be

T2BN0M0

She was referred to an ONCOLOGY SURGEON who removed a large piece of skin from the original site to just below her right shoulder.

He also removed the lymph node under her right arm. (although he kept stating he did not need to as the results would be clear).

The surgeon would not tell us why he thought the results would be clear.

Pathology on the removed skin and lymph nodes are clear...

We had two visits with the surgeon. 1 prior to surgery and 1 after to get the results.

She is scheduled to have follow up visits every 4 months.

NO ONE will give us any further information. The surgeon stated there is a 20% chance the melanoma will come back. After being pressed he stated

it will come back in her organs and he based that on her high? mitotic rate. I had to ask three times to get that answer. It seems he does not want to discuss her case... this is frightening me as i think HE thinks she is a lost cause..... (and i dont frighten easily).

SEEMS WE MUST JUST SIT AND WAIT.

MY burning questions are.

-Does the melanoma ALWAYS come back with everyone with these pathology readings above or only some peoples.

-If it comes back and they find a tumor and need to operate, is it easier if she is normal weight.. (she is overweight).

-I phoned the melanoma unit at the hospitall and they state she does NOT need an oncologist unless her surgeon refers her. (the surgeon is NOT an oncologist). Is this correct.

-Why was he so sure the lymph node would be clear. Does he think the cancer has gone below the skin into the blood or tissue.

If anyone can help me i would appreciate it....

very kind regards from Bron (queensland australia)

PS is it ok to post on this board. i found this the best one so i joined.

 

 

 

 

 

 my mmy

 

Login or register to post replies.

Replies by: POW, bron, washoegal

Hello... i have just joined this MRF messageboard today. please be patient. i have never used one of these boards before. i will be clinical and brief.

Please excuse any spelling errors i am very stressed...

My daughter is 42 years old.

 Had melanoma removed by local doctor on 25.07.12 FROM the middle of her back between her shoulder blades.

Pathology results.

-superficial spreading melanoma.

-BRESLOW 2MM.

-CLARK Level 4.

-ulcerated-YES.

-mitotic rate  >5

I have done hours on the computer and worked out she would be

T2BN0M0

She was referred to an ONCOLOGY SURGEON who removed a large piece of skin from the original site to just below her right shoulder.

He also removed the lymph node under her right arm. (although he kept stating he did not need to as the results would be clear).

The surgeon would not tell us why he thought the results would be clear.

Pathology on the removed skin and lymph nodes are clear...

We had two visits with the surgeon. 1 prior to surgery and 1 after to get the results.

She is scheduled to have follow up visits every 4 months.

NO ONE will give us any further information. The surgeon stated there is a 20% chance the melanoma will come back. After being pressed he stated

it will come back in her organs and he based that on her high? mitotic rate. I had to ask three times to get that answer. It seems he does not want to discuss her case... this is frightening me as i think HE thinks she is a lost cause..... (and i dont frighten easily).

SEEMS WE MUST JUST SIT AND WAIT.

MY burning questions are.

-Does the melanoma ALWAYS come back with everyone with these pathology readings above or only some peoples.

-If it comes back and they find a tumor and need to operate, is it easier if she is normal weight.. (she is overweight).

-I phoned the melanoma unit at the hospitall and they state she does NOT need an oncologist unless her surgeon refers her. (the surgeon is NOT an oncologist). Is this correct.

-Why was he so sure the lymph node would be clear. Does he think the cancer has gone below the skin into the blood or tissue.

If anyone can help me i would appreciate it....

very kind regards from Bron (queensland australia)

PS is it ok to post on this board. i found this the best one so i joined.

 

 

 

 

 

 my mmy

 

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markkramersf's picture
Replies 13
Last reply 9/16/2012 - 1:45pm
Replies by: Anonymous, rbruce, markkramersf, audgator, Bubbles

Looking on going to Tampa for PD1 treatment. Want  to get a run down of how long the treatment takes, and help on getting lodging options. I have stage 4 melanoma and have been through IL2, which did not work. I am coming from the west coast, and want to get a break down on what the PD1 treatment entails. Any help would be greatly appreciated.

 

Mark

No Day But Today

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