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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JustJaren's picture
Replies 8
Last reply 4/12/2017 - 10:54pm

Still awaiting my appointment with an Emory specialist for a 2nd opinion, but everyone I talk to says they WILL reco a groin dissection for my 4 cancer cells in the subcapsular region of the SLN.

I am PETRIFIED of lymphadema as I am an avid bicyclist/hiker/love to work in the yard. 

Can anyoine tell me if they have lymphedema and have gone on to enjoy biking and hiking?

I am boggled on what to do. WIth my original lesion being .86 with an 'ocassional cell' giving it a mitotic rate of 1 and a clark level 4, I am still not convinced that a groin dissection is the answer, considering the risk of life altering complications.

 

 

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Michelle820's picture
Replies 4
Last reply 4/12/2017 - 12:07pm
Replies by: Anonymous, jennunicorn, Michelle820

Hi, back in December I had a melanoma insitu removed from my left chest. Had a WLE margins clear. Have been to my follow up spots where the Doc palpates for nodes etc. 

Myfirst question is why do they do that? This is a nieve question I know, but with an insitu ? or is this just common medical practice? So the Dr explained the importance of monthly skins checks and to check lymph nodes too. Well about a month ago I felt axcillary nodes! I called his office nurse who directed me to my primary Doctor. She felt them but had me wait a few weeks. So while at home I am now really checking my nodes out of curiosity, and low and behold I find one under my left clavicle (infraclavicular area). I just realized this is about maybe 5-7 inches above my scar from the WLE.

My primary is waiting to hear back from my derm specialist to see what tests she should order-I'm getting impatient and a little frustrated at this point. I did have an ultrasound that confirmed it was a node, however, it is less than a cm. Any insight?  Ty:)

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/12/2017 - 10:35am
Replies by: Anonymous, Bubbles

I am currently in a trial of Glembatumumab vedotin & Varlilumab.  Just wondering if anyone out there has done this and if so, what kind of side effects have you experienced.  Any info is greatly appreciated.

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Hello, I am out of treatment options by my local oncologist. I progressed on ipi / nivo combo and nivo mono. I was on cotellic MEK inhibitor the last three weeks, but denied any more compassionate drugs based on prescription was combo and my mutation is non v600 or k601n.  I have an initial consult with Toronto oncologist for Tils in 2 weeks.  If I am not accepted,  then I will pursue US clinical trials, unless something else is offered,  although mostly phase 1 toxicity and dose escalation, which Onc states 10% response.

My local oncologist stated that my treatment will be either Ottawa or Toronto.  I am covered by provincial health care and don't have private insurance.  The question I have for the  US trials;  I assume that drugs would be covered by pharmaceutical company, then I need to fund travel &  lodging.  For international patients,  how does the funding of the hospital care get taken into account?  Are there better locations to negotiate costing than others?  Also, do I need a US oncologist to recommend any of the trials?  If so, since I am located in Northeast, then MSK , NYC or Boston would be closer. If requied travel to MD Anderson, TX.

David, ( Stage 4, mets lung and liver)

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sprdie's picture
Replies 3
Last reply 4/11/2017 - 2:54pm
Replies by: Anonymous, sprdie

I had a stage 1 melanoma on my neck a month ago.  I had it removed.  I went back for my full body skin check last week, and I had 4 moles removed.  3 were ok, but the 4th said compound proliferation of melanocytes.  Sending on for Myriad Molecular Testing.  Results in 5-7 day.  This one was on my cheek close to my hairline.  This has been a whirlwind of a month for me.  Thanks.

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Nick19's picture
Replies 9
Last reply 4/11/2017 - 12:46pm

Hi all. I am new here, and back in January I had a shave biopsy on suspicious mole on my back. 

Two weeks later I got results, melanoma in situ. No depth, thickness etc given in biopsy report. 

I had WLE with clear margins  

 Final Pathologic Diagnosis

MELANOMA IN SITU ARISING IN A DYSPLASTIC NEVUS WITH SEVERE CYTOLOGIC ATYPIA. 

My question. I have read few times that shave biopsy are not good if it is about melanoma. 

How does it apply to me?  What should I think? 

I have already spoken with two doctors in the hospital, dermatologist and melanoma specialists and they assure me it was in situ and shave biopsy was properly done with proper depth with adequate staging.

What are your thoughts guys?

Thank you.  Nick

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Bulldogs81's picture
Replies 5
Last reply 4/11/2017 - 12:43pm
Replies by: Anonymous, WallyE, BillMFl, Jamie1960

Hello! A few years ago I was dx'd with melanoma in situ on my right fore arm. I had an excision, the margins weren't clear and I had to have it re-excised. 

Today I noticed, right in the center of the scar, a brown splotchy line has developed. It appears to be right where the original mole was. I'm a little worried, but because it was in situ I am not sure if it is possible for it to come back. 

Any help would be appreciated! Thanks!

 

 

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chalknpens's picture
Replies 8
Last reply 4/11/2017 - 2:40am
Replies by: Anonymous, chalknpens, Linny, Janner, JerryfromFauq, POW

I have two primary sites of melanoma, both of which have been surgically treated with MOH surgery and sutures afterward. I am almost a year since the last biopsy was clear to the margins.

Two weeks ago, my husband and I walked 5 miles in a Walk for MS fundraising. The sides of my pinkie toes were tender at the end of the walk. My walking shoes are about a year old and have been comfortable enough until that walk. My big toes did not feel tender at all.

A week after the walk, I notice that both my large toes' nails were reddish-purple.

This week that color has darkened to black on the right toe, and deeper violet on the left. The coloration is evenly distributed over most of my nail on each large toe.

There is no pain, no fever, no chills, no pressure and no effect on my walking.

Do you think I ought to see a doctor? Which doctor? I have a dermatologist or melanoma (stage 1 superficial) and my husband has a podiatrist. And we both have our primary care physician.

Thoughts? I'll probably start with my pcp.

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Jsneathen21's picture
Replies 7
Last reply 4/11/2017 - 2:37am
Replies by: Adrienneporter, Janner, Jsneathen21, Anonymous

I am 26 years old it took approximately 2weeks for the dermatologist to tell me my results of this even... They sent it off for second opinion at a university even.. To tell me today I have this? And that it's rare in my age group and at all!! Does any one know anything about this rare type? Please let me know thank you!

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TexMelanomex's picture
Replies 21
Last reply 4/11/2017 - 12:23am

I just got to view my path results on my MD Anderson account...not sure why they do this without calling first BUT not to detract from the results...

Finally some good news! All 4 lymph nodes were clear and all surgical margins clear! Its weird I should be celebrating right now but not quite ready to let me guard down too much. I was prepared for battle and Im not sure if the battle is coming any time soon...does that sound crazy?

In any event, I'm glad I can share some good news on here tonight. I will post more after talking with Dr. Ross tomorrow. For tonight, Stage II is as far as it goes!

 

Tex

Tex

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/10/2017 - 9:27pm
Replies by: jennunicorn

Last Thursday I finally saw a doctor about a mole that had evolved. I remember noticing it was itchy and a little scabbed 3 years ago. After it healed & began to grow I told myself I was overreacting. I went into the doctor expecting to hear that there was nothing wrong. They removed it immediately, sent it to a pathologist but wouldn't answer any of my questions. What happens if they find cancer cells? Will they immediately know if it's isolated or has spread? Will more tests be done before I know for certain what's going on? Hopefully I'll get my results in the morning but the anticipation, not knowing is enough to make a person crazy. Please any advice would be so appreciated!

Robynne Reyes

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Hikeratheart's picture
Replies 4
Last reply 4/10/2017 - 5:59pm

Hi all, 

happy to report negative results for two "bumps" I had on my leg and groin. At stage IIB, 2 primaries, I'm continually monitoring. 

I have a question about monitoring: I see a Derm and surgeon who have lots of experience with melanoma, but how do all of you determine if someone is a specialist? I don't think we have one in Milwaukee, and should I see one at this stage. I may need to travel, but for skin checks, and biopsies?

Also, I went in for a post surgeon appt today (same dr who biopsied my two bumps), and as long as I was there I asked him to look at two new areas. One dime size (itchy at times) irregular shape, waxy appearance spot, on my left forearm, and a pimple like spot near my primary, left upper arm. He said he could take them off, no problem.  My next skin check is 5 months away.

Should I just get the two spots cut out? Would they need to biopsied first?

I also had a primary on my back in July 2015,  and while in for my skin check up last month the derm saw a spot near that primary that looked suspicious and gave the area a shot of nitrogen. The thing is it touched my ( now healed) incision! I also didn't look before the PA gave the treatment. Which I regret.  What if it was Mel? It has scabbed over. Is it common for a spot to appear near a primary almost two years later.?

i feel like I have a handle on this skin ck stuff , but am really afraid I'll miss something. Or should I be concerned less about spots, and watch for changes? Please advise.

thank you

kathy

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Jim M.'s picture
Replies 5
Last reply 4/10/2017 - 4:09pm

Today is the day 6 years ago I had a LND to the right axillary to remove the melanoma. It didn't come back. I am humbled in the presence of my Lord and Savior Jesus Christ. I pray that the small part I played being on a clinical trial with Ipi helped pave the way to serve others. Others certainly have been servants in my tiime of need. To celebrate the day our house is up for sale with our hope being to move to my wife's country, Costa Rica! God bless,

Jim M.

Stage 3C

LND: 11/1/07

radiation: 12/07 t0 1/08

Ipi and vaccines: 3/08 to 11/08

NED

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rabbits68's picture
Replies 7
Last reply 4/10/2017 - 3:13pm

Yesterday was my screening at NIH for TIL trial.  I was impressed with the campus and staff, but I didn't qualify for the trial.  My blood work did not meet the requirements, mainly my white/ tcells and liver counts.  They didn't feel like my cells would grow or be viable for the treatment.  I was disappointed, but glad I went.  I guess we will next go to Sloan Kettering for other options. My physician is considering some type of combo therapy like ipi/nivo but wants a melanoma specialists to see me.  Still hoping and trusting there is something out there for me.  God's Got This!

LisaG

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rpruck's picture
Replies 2
Last reply 4/10/2017 - 9:43am
Replies by: Gene_S, Scooby123

Hi everyone...I have had 2 yervoy treatments . After the first one there were no issues at all. Second time I have had diarrhea ongoing for 4 weeks now. Doctor has me on prednisone and while is has reduced some it it is still quite frequent. Tested weekly and monirtoring but hoping to see if others have had this and found success eventually. Mext treatment is on hold until we recitfy the issue.

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