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
skousal's picture
Replies 1
Last reply 1/29/2017 - 3:58pm
Replies by: Jules

Hi everyone, 

I am currently stage 3a, still awaiting a left complete groin lymph dissection scheduled for next week at MDA. Since my initial surgery 12/13/16 for the WLE and SNB I have had intermittent burning in both left and right groin areas. The surgical oncologist (not at MDA)  didn’t address my concerns at all, I have also been having low grade fevers. With time the pain and swelling is getting worse. The last few nights I haven't been able to sleep due to the pain. I can feel two swollen nodes maybe the size of a walnut, in each groin. The odd thing is that the swelling is not isolated to the left groin, the side of the positive SN, but rather on both sides. Has anyone else had these symptoms or could offer remedies to reduce the pain, or reduce my anxiety. A hot bath appears to help some. 

Thank you, Shawna 

Login or register to post replies.

iskitwo's picture
Replies 8
Last reply 1/29/2017 - 1:12pm
Replies by: dmturner, mjanssentx, iskitwo, dentholla, Anonymous

Just wondering if anyone on here as used Dr Cowey. I am currently seeing someone at MD Anderson but would like to have a good Melanoma oncologist closer to home. I can see were MD is going to be great for trails or even opinion for plan of treatment but with 2 small children being close to home is my goal. 

 

Login or register to post replies.

Bmine102793's picture
Replies 8
Last reply 1/29/2017 - 12:21pm

With malignant melanoma do you get large growths under skin where melanoma mole is ? And if lymphnode closest by has also swelled does that mean its most likely spread? Havdnt seen doc yet im just curious

Login or register to post replies.

45_dps's picture
Replies 8
Last reply 1/29/2017 - 5:45am

Hi,

[First posts are always tough because I'm searching for answers but not providing benefit to others.]

My melanoma was diagnosed on Monday January 16, 2017, so I am very early in my understanding of everything. My doctors are great and are helping me at every step/day of the way.

My melanoma was diagnosed based on a lymph node excision (neck area below the ear) which tested positive for melanoma. The lymph node had been swollen for a few months and had not responded to antibiotics, so the belief was it may show a positive result for Lymphoma (that was the reason for the excision).

My question to others with knowledge or experience is this: what if no skin-based source for the melanoma is found? Is that a common occurance?

(Dermatologist did a full body review on Jan. 18th. Four moles were removed but tested negative (normal).

(Opthamologist appt will be on Jan. 26th to check for ocular melanoma).

(PET scan with CT scan on Jan 19th with no signs of melanoma elsewhere in my body. Also MRI of the brain was negative (normal).)

Thank you!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 1/28/2017 - 11:08pm
Replies by: Anonymous, Charlie S

In general how likely is it that you can work during chemo or radiation

Login or register to post replies.

Tink88's picture
Replies 4
Last reply 1/28/2017 - 6:07pm
Replies by: Tink88, 45_dps, jennunicorn

I went to the Dr on Monday for a skin exam, and one of my moles are melanoma 2mm. I am going to UCSF early next month for further testing. Waiting is a bitch, a scary bitch. I appreciate these site

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 1/28/2017 - 6:04pm

My husband was first diagnosed in 2010 with melanoma in his right leg under a mole on his calf.  Now, going on his 7th year battleing this disease, he is at a stage IV.  Over the past he has gone through 5 or 6 surgeries, 3 brain radiations, chemo, numerous immunotherapy and most recently Opdivo immunotherapy.  The immunotherapy has been the best treatment thus far, and his recent PET and MRI scans have come back clear with the exception of a very large ( the size of two soft-balls) tumor in his upper leg/ groin area which has continued to grow.  His oncologist and the surgeon have said that it is inoperable due to its placement on top of the main artery in his leg. . Desparate to find something that would shrink the tumor that continues to grow, we asked to be approved for T-Vec.

About two months ago he was approved to try T-Vec, which is 4 vaccinations directly into the tumor per session.  After the 5th session of T-Vec, the skin broke open on the tumor and the necrotic tissue is litterally pushing out of his leg and leaking fluid out of the wound.  Not knowing this would happen with a trial medication, we need to change his bandage 3 to 4 times a day which has made the situation much worse. We immediately stopped the T-Vec after his wound got an infection and he spent 6 days in the hospital.

MY QUESTION: Is there anyone out there who has had oncology surgery near a main artery?  I have a hard time believing that a team of surgeons including vascular surgeons could not remove this tumor.  Any advice out there?  HELP!

Login or register to post replies.

stretch's picture
Replies 15
Last reply 1/28/2017 - 8:03am

I AM 63 AND WAS DIAGNOSED WITH STAGE 1 MELANOMA - I HAD SURGERY EARLIER THIS MONTH AND ALL SHOULD BE OK (NEGATIVE MARGINS)

HOWEVER I AM TOTALLY STRESSED AND CONFUSED AS TO HOW TO GO ABOUT LIVING MY LIFE - IS IT OK TO BE IN THE SUN WITH UV PROTECTION CLOTHING OR AM I TO AVOID IT AT ALL COSTS?

MY HUSBAND AND I ARE ACTIVE PEOPLE WHO LOVE CANOEING, SWIMMING, ETC; WE HAVE A FAMILY REUNION IN JULY ON A LAKE IN NEW HAMPSHIRE AND I HAVE NO IDEA WHAT PRECAUTIONS ARE NEEDED (OTHER THAN THE UV CLOTHING AND LOTIONS)

I CALLED MY DERMATOLOGIST, WHO SAID I WAS NOT TO BE IN THE SUN AT ALL!!! THAT SEEMS CRAZY (IMPOSSIBLE!) AND I AM HOPING TO GET MORE CLARIFICATION BEFORE I RESORT TO LIVING MY LIFE IN A CAVE

THANK YOU ALL IN ADVANCE FOR ANY ADVICE/SUGGESTIONS/CLARITY YOU CAN PROVIDE!

 

CAROL

Login or register to post replies.

Showmegirl's picture
Replies 6
Last reply 1/28/2017 - 7:59am
Replies by: MaPerny, Showmegirl, Anonymous, Aloha14, SABKLYN

I finally heard from the doctor's office.  It's been 2 weeks since I had my WLE and SLBN.  I wasn't supposed to see the doctor until next week because he is out of town this week.  I called the office because I was having some pain in my arm and wanted to rule out any complications.  The nurse called back and told me what the cause was and what to do to make it feel better.  Then she asked if anyone had called with my results.  I told her no becasue I was told I had to wait until my follow up.  She said I have great news for you!   The lymph nodes tested negative and the margins were clear.  I can't help but be thankful and very excited.  I don't like to be happy when others are going through such hard times, but there is hope and you cannot give up. Bless you all!!

Login or register to post replies.

WallyE's picture
Replies 2
Last reply 1/27/2017 - 8:49pm
Replies by: Mark_DC, debwray

I have just received the following. Can anyone tell me how serious this is please? I live in fear.

Macroscopy

Well circumscribed lobulated creamy white extensively necrotic mass measuring 70x57x40mm (64 grams)

Microscopy

Representative sections show a very pleomorphic high-grade malignant epithelioid/spindle cell tumour with evidence of extensive tumour necrosis. On the periphery of the tumour, there is tissue resembling compressed atrophic pancreas.

In some areas the tumour is bordered by non-neoplastic soft tissue and in other areas the tumour extends to the histlogical perimeter.

Immunohistochemistry

1. S-100 - strongly possitive

2. Mel A - very strongdiffuse membrane and cytoplasmic possitivity

3. HMB45 - strong diffuse positivity

4. MITF-1 - strongly possitive

5. Ki-67 - 50%

Comment

The above immunohistochemical profile would support the morphologic and clinical features suggesting those of Metastatic Malignant Melanoma

In view of the above findings, the BRAF mutation analysis will be performed as this has prognostic and therepeutic implications (BRAF request no 4007/G)

ICD10 coding C77.9

Diagnosis

Metastatic Malignant Melanoma.

 

One day at a time.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 1/27/2017 - 6:22pm
Replies by: Mark_DC, Anonymous, Polymath, Aloha14, cancersnewnormal

Any help with this would be appreciated. I have spinal problems at multiple levels.

Neck especially c4 /c5. Large prolapsed disc at T10/11 and T12 also multiple problems lumbar region including L5/S1 . THis has been imaged by MRI at intervals and has remained stable.for well over a year.

Just had CT scan results-as part of ipi nivo treatment. Examiner is indicating melanoma spread  ( CT with contrast ) to T10/11, T12 and L5/ S1. THe last spinal MRI was May 2016. The previous CT with contrast was late September 2016.

Is there any chance that my disogenic disease has been mis- identified as melanoma ?

Which is the better imaging technique for spine ?

Is melanoma more likely to spread to areasof the spine which already have issues ?

Struggling to take on board the latest- with new disease identified in skull, lungs, groin, pelvis and spine

Probably clutching at straws...but thought I would ask anyway.

 

 

 

Login or register to post replies.

David McCaw's picture
Replies 7
Last reply 1/27/2017 - 6:12pm
Replies by: David McCaw, Anonymous, Bubbles

I moved from stage 3c with unresectable melanoma in transits to stage 4 with  mets in lungs and liver. I will be receiving combo #4 today nivo / ipi  Unfortunately my immune is not responding according to med onc after 8 weeks and 3 combos with CT scan.  The plans 1) Army 1 - continue with immunatherapy for today, 3 nivo wks, 5 wks nivo, CT scan at 6 weeks , if progression 2)  Different Army with Targeted therapy - Cotellic & Zelboraf 3) Investigating Adoptive T-cell Therapy at Princess Margaret hospital.  Any other suggestions. 

also note,my braf mutation is k601n.  I live in Ottawa, Canadaand will be seeing  Ed Williams today.

Thanks,

David

 

David, ( Stage 4, mets lung and liver)

Login or register to post replies.

Bmine102793's picture
Replies 6
Last reply 1/27/2017 - 5:25pm
Replies by: mjanssentx, Bmine102793, Patina, UBContributor, Anonymous

My fiance had a dark mole on his arm that grew in size and width and changed colors one day he showered and scrubed it off and it bled pretty nast but was gone with in about 3 months he developed a large hard tumor like growth about 2 months after that he developed a large lump under his arm pit which i imagined was his lympyh node and i made him go to the doctor. She thought it was nothing to be concerned about and sent him to surgeon for removal. He had the lump by elbow area removed abd lump under arm removed. The beggining of this week he went in to have staples removed and sugeon told him that biopsy came back positive for malignant melanoma. We are scheduled to see an oncologist on tuesday for more info and treatment options we have no clue what stage we are in or how bad it is. Im am very scarred for him and our kids our financials and everything and i am unable to work because our youngest daughter has an immune deficiency that causes her to be sick constantly. Any advice or help? The area under his armpit seems to still have some kind of growth which makes ne think surgeon didnt remove it all

Login or register to post replies.

Bmine102793's picture
Replies 3
Last reply 1/27/2017 - 4:26pm

As youve read my fiance was just diagnosed but we dont find anymore out till next week. Well hes having a hard time copeing. He took three days off to calm down and was supposed to go back to work today but woke up this morning was headed for the door ran back in and started throwing up and then called off. I know hes nervouse and i am to. And i really am not helpful because i have a bad outlook on things like this because thats just the way life has worked out so far. And its worse because i research so much and tell him what i find. I hate that i do that but my daughter was recently diagnosed specific antibody deficiency and with out my research and deep digging none of her doctors would have peiced it together yet. Sorry guys just venting and wprried and i love spending every moment we can tpgether but i have to get him back to his feet so he doesnt give up all ready

Login or register to post replies.

Aloha14's picture
Replies 3
Last reply 1/27/2017 - 1:00pm

During December I had IV's put in 4 different times in my left hand/arm. Plus, some techinicians that didn't know how to do an IV and poked my vein in several different places on my arm. Now I notice there's 2 places where close to the surface veins feel hard. It doesn't hurt but I'm wondering if this is something my doctor should look at.?

Login or register to post replies.

Pages