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.

Expand/ Collapse Topic
 
Replies By
View Topic
ahren_b's picture
Replies 6
Last reply 6/10/2015 - 7:41pm
Replies by: ahren_b, Anonymous, Teochasse, Janner

Hi All,

I'm so happy to have found this resource, I've felt a little lost since receiving my diagnosis last week. I went in a year ago for a small patch of discolored skin on my neck below my right ear and was told that it was nothing to worry about (no tests were done,) a year later I have a melanoma that is "At least 3.5mm deep" the at least part is that the dermatologist scraped it off not really knowing what it was and sent it off for biopsy. The pathology report said the melanoma went through the entire sample so now I'm having surgery done to hopefully remove the rest while testing the sentinel nodes for any spread. My doctors are sharing very little information with me and although I've asked, no resources or support suggestions either. I feel like I'm twising in the wind, I don't even kow what stage it is. I keep thinking "this little tiny mole is causing all this grief? How is this possible?" My labs have all come back normal, and my surgery is scheduled for Friday; I'm told it'll be a week or so before I hear back on the node biopsy. I'm doing my best to keep it together for my family and friends and 90% of the time I'm succesful. They're all being great ... but none of us really know what to expect out of this situation. Any advice for the surgery or what to expect afterwards would be greatly appreciated.

~Ahren

 

Login or register to post replies.

Gordknight's picture
Replies 7
Last reply 6/10/2015 - 2:45pm
Replies by: Aundrea, Gordknight, Anonymous, Squash, Janner

Hi everyone. Sorry to be a bother. I can tend to be a hypochondriac but advice here always helps. I was diagnosed with stage 1a melanoma clark lv 2, .22 mm depth, no ulceration and less than one mitotic figure on the left side of my neck back in october 2014. Had wle done in november (initial lesion was removed with shave biopsy with clear margins). Wle excision tissue also came back clear. Since then i had one small issue where a part of my wle bled and needed re- excision to be safe. Came back with some abnormal squamous cells but derm said its nothing to be concerned about. That was a month ago.

Now i have found a hard lump a bit above and back behind my wle scar. Not sure if its a lymph node or what but i think it is. My dilema is im out of town till august first. Im going to go see an insta care doc today but dont know how much help that will be. How concerned should i be? Hard to not freak out and let my mind go to dark places.

Login or register to post replies.

Roncole11's picture
Replies 7
Last reply 6/10/2015 - 1:19pm

I have been diagnosed with metastized melanoma in my lung, I also have Crohns Disease and have been on immune suppression meds for about 15 years. Because of the Crohns, I am unable to take yervoy.

Does anyone else have this problem? I have been to Johns Hopkins, and the doctors there were not a big help.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 6/10/2015 - 12:24pm
Replies by: Anonymous, Janner

I wonder what is the recurrence rate for a stage 1a melanoma. I have read that the recurrence in thin melanoma is low and the chances of spread local, regional and distance is low, but how low is it? Exist any statistics in thin melanomas grouped by breslow depth ranges or clark level? How  low risk is with a Breslow 0.63 mm, clark III mitosis < 1 no ulceration and primary on top trunk ? What are the chances of a recurrence? I have read some people with stage 1 turns to stage 3 or 4 some years after diagnosis.

Thanks!!!

M.

Login or register to post replies.

robbier's picture
Replies 7
Last reply 6/10/2015 - 12:24pm
Replies by: Anonymous, Girl52, tschmith, arthurjedi007, Bubbles

Back in March of this year, I had a PET/CT which showed hree hot spots.  Three surgery later, a trip to MD. Anderson.  Had a Pet/ct scan in July that showed two area of concern.  On in the abdomen and one in the mid right shaft of the femur.  Had a bone scan August 10.  Which showed no evidence of disease at that time.  Cancer Doctor thought I was in remission and didn't need treatment.  Around the last week of August I went to see my General Health Care Doctor.  I felt like I had a pulled groin muscle.  He gave me muscle relaxer, two weeks went by and still in pain.  By his time I was running a low grade fever.  Went back to Dr. He found blood in my urine, and a appointment for a Urologist for Oct 13.  Was sent back to Cancer doctor He sentme to see a Bone doctor.  Saw Dr. Harcout around Sept 16th.  He thought at this time, I had pulled muscles 7,8 in the left left and needed physical therpy.  The pain so severe I couldn't drive, and couldn't walk.  Got a friend of mine to take me to Hospital.  I finally got admited and they did a CT can with and without contrast, and MRI.  Monday ( Oct 6, 2014) the Cancer doctor said there was lesions seen in the abdomen towards he pelvic area, and they found a L4 fracture of  the spine.  Released from Hospital Oct 7th.  Came home, wednesday Oct 8th was sent to see Dr. Hixson for possible radation therpy to the spine.  Dr. Hixson, decided I need to go back to th hospital.  Was re-admitted to Hosptal, in Mobile, Al.  More test, More MRI, of spine, and CT scans with and wothout contrast.  They found changes to brain, the cancer is not in my brain, just changes, those lesions, and possible cancer in the spine.  The first thing they did was pain control.  The specialist said he didn't think they could operate on the L4 because they thought there was evidenve of disease.  Was release Oct 10th from ospital with pain meds and pain hopefully getting under control.  Went back and saw Dr. Hixson after getting out of hospital on Oct 10th.  At that time, I was fitted with a face mask, and lines on my belly.  I just finsihed my first week of radation treatments, for that L4  spine.  They decided first to treat me with radation for the 3 weeks, so I have two more weeks to go.  Then I will be given two weeks to three weeks of rest. Then My cancer doctor is talking about a Braf inhibotor ,two differnt kinds of chemo pills is what I call them.  He wants to see if the these wok, then He said Yervoy.  I still believe God is in control of my life.  I know I have a road ahead of me, doing the best I know how to stay postive in my situation.  Thank all of you for your prayers at this time.

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

Login or register to post replies.

blackcat4766's picture
Replies 3
Last reply 6/10/2015 - 12:02pm

Greetings,

im waiting for Yervoy to enter the UAE. I was wondering what kind of side effects does it give you?

Blackcat4766

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 6/10/2015 - 10:54am

Does mucosal melanoma respond to immunotherapy treatments differently from cutaneous?  My father has a ery high tumor burden and was just taken off one of the pd-1 trials after only 2 mts since his scan showed many new nodules and no improvement.   His oncologist is now recommending yervoy.  Have any of you had experience with a similar situation?  

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 6/10/2015 - 8:44am

My husband was diagnosed last month with stage IV BRAF melenoma. No primay site found, but it is in his duodenum and may have some spots on the mesentery of the small bowel.  He had one lymph node removed from  under his left arm that was also BRAF melanoma.  He has just started on his chemo meds. He is taking Tafinlar + Mekinist.  3 days in he is doing well with it and so far has a wonderful appetite.  Any one with any information or experiences with these two drugs?

Login or register to post replies.

DennysGirl's picture
Replies 6
Last reply 6/10/2015 - 1:26am
Replies by: Anonymous, DennysGirl, arthurjedi007, Mom2Addy

My husband is no longer physically able to work. He is stage 4 with mets throughout his body. We have been advised to file for disability. My question is does anyone have any advise for making it through the six months before you receive any money? Yes, I know we should have saved for an emergency fund...but we didn't.  I have always been a housewife and know that I will need to find work but I know we won't be able to live on whatever I am able to bring in got 6 months. Also when he quits he will lose his insurance... What then? 

Sorry, just a little frustrated at the system! 

Renee~loving wife fighting for her hubby! 

Login or register to post replies.

Eileensulliv's picture
Replies 6
Last reply 6/10/2015 - 12:46am

On Thursday, I had a CT scan before my usual doctor appointment and Nivo treatment. The doctor said a preliminary look shows I am down to two tumors... One in my lung, and one in a lymph node in the mesentery bowel. Both tumors have shrunk approximately 50%! in a few days I should have the final report with actual measurements and tumor count, but what I heard in the office was incredibly encouraging news!!! 

I then went for my treatment. They give me a bag of Benadryl first, since I broke out in hives during my second treatment. Halfway through the Nivo, I woke up and vomited, had a fever and erratic heartbeat. I didn't really realize what was going on because I was so out of it. The fever and nausea persisted through Friday. Now I am just dealing with the usual GI issues. The nurse called me the next day and said they think the reaction was due to the funky cocktail mix of CT contrast, Benadryl, and Nivo on a fairly empty stomach. She said they are also considering reducing the Benadryl dosage, which would please me! I hate sleeping through all of this and then feeling groggy for hours...

 

I'm still on cloud 9 though! I feel like I won the lottery!!!

Eileen 

Login or register to post replies.

Jennycrn1's picture
Replies 20
Last reply 6/9/2015 - 11:28pm

I had a random mole check and 3 moles removed at the end of April, and than found out one of these (on my back) was melanoma. Have since had a wide excision surgery and sentinel node biopsy-- and 1 of 3 sentinel nodes came back with 'a few melanoma cells' in it. No big tumors in the nodes. The excised tissue had 'a few melanoma cells' but otherwise the margins were clear. Then had a PET scan (negative) and a full axillary lymph node dissection (all 13 nodes removed were negative). Been told I am stage 3a. Waiting on the genetic testing.  Meeting local Oncologist this week and then going to the big referral center in 2 weeks.  The medication portion of this disease is overwhelming. I'm not sure what to expect or even ask for based on what I've read. I'm hoping the 2 doctors will recommend the same thing, and that I can get treatment locally if needed. Any advice? We have 2 kids under age 4 at home with us now, and our oldest son died less than 2 yrs ago from a congenital heart disorder while I was pregnant with my youngest. I cannot bear putting my family thru any more loss. I want to do everything I can to stay around for them! Thanks in advance for any advice....

Login or register to post replies.

tomw65's picture
Replies 1
Last reply 6/9/2015 - 9:04pm
Replies by: Rocco

If Ipi treatments are successful whats the best one can expect for it to last? I have just finished my last of four infusions.

Tom

hazel43green

Login or register to post replies.

tomw65's picture
Replies 2
Last reply 6/9/2015 - 5:06pm
Replies by: liberty04281, Mat

How long after the four ipi  infusions before testing to see if anything isworking or not

hazel43green

Login or register to post replies.

RGal's picture
Replies 5
Last reply 6/9/2015 - 4:35pm
Replies by: RGal, Ed Williams, Mom2Addy, Anonymous, Bubbles

Can anyone share their stories with dealing with brain mets?  My father's latest scan showed new tumors in his brain and the rad oncologist initially wanted him to start Yervoy and not treat tumors.  Last week half of his face began to droop and the latest scan showed growth of the brain mets so he is now doing 10 days of targeted radiation.  

Any stories good or bad would be much appreciated.

Thank you.

 

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 6/9/2015 - 4:21pm
Replies by: msrover06, Janner

In Feb. I was diagnosed with a melanoma in situ on upper left check just underneath my eye.  My dermatologist recommended a wide area excision done by a plastic surgeon, and I agreed. It was done, but the path report returned with a report that the margins were not clear.  Here are the comments:

"Mart-1 stain reveals irregularly distributed nests, confluent solitary melanocytic proliferations as well as intraepidermal pagetoid spreading, consistent with melanoma in situ (lentigo maligna).  Inked margins are narrowly clear of melanocyctic lesion (peripheral margins from both lateral sides are les than 1 mm to junctional melanocytic proliferation).  No definite invasive lesion is identified in the sections.  Additional margins are recommended if clinically feasible." 

I went to  Moffitt Cancer center where I saw a surgeon for a second opinion.  He suggested another surgery using "Slow Mohs" to insure all margins were clear.  That may leave extensive scarring due to the location near the eye. 

My dermatologist has recommended just waiting, keeping an eye on the area, and I already go in every three months, as I am a 66 year old who has spent a consider time in the sun growing up and have a lot of skin damage from such.  My mother and a sibling both had melanoma (my mother stage 4, dying eventually from it), my sibling stage 2, with no recurrence yet.).  

I am torn as to what to do.  Anyone have experience with another excision? 

 

 

Login or register to post replies.

Pages