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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Can anyone recommend a melanoma specialist in the St. Louis area?  My current doctor (Linette) is leaving the city and I'm not certain of other resources.

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Anonymous's picture
Replies 1
Last reply 5/1/2016 - 3:21pm
Replies by: Anonymous

Hi Folks,

Had infusion 2 -18 days ago. Currently Stage III Melanoma-on drug  trial Keytruda v placebo to prevent recurrence.

10 days after first infusion had dramatic inflammation and rash following route of likely lymph redirect- round thigh and buttock - (inguinal and pelvic lymph dissection late Dec 2015). Resolved to bruising- Lymphoedema practioner was interested and took photos.

12 days after second infusion more probs- woke up and had lost significant movement in melanoma leg- back on elbow crutches as so painful to walk. ( Like  10 days after total knee replacement September 2015)

Lymphoedema swelling pronounced- can't even lift foot to drive to docs. Running temps= was assessed for spinal lesion- new MRI negative.  crp 100 plus ESR 20 . Movement issues reduce so discharged from hospital after precautionary overnight stay but then end up with high temps and aggressive cellulitis type rash from above knee to ankle that evening.

Antibiotics started for cellulitis by GP. fiollowing morning. Movement still painful and restricted but not as severe as initially. Redness much reduced.  Temp still spiking intermittently.

Question- Has anyone else had violent rashes at the site of previous recent surgeries ( Knee replaced  28 September 2015 )

Are the violent rashes likely to recurr ? Anyone else had anything similar ? Its all rather strange

 

 - 

 

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spiderman's picture
Replies 4
Last reply 5/1/2016 - 9:00am
Replies by: keepthefaith11, Bubbles, Anonymous

As melanoma warriors we face an interesting dilemma with respect to vitamin D levels. We know that melanoma incidence is correlated with low levels of vitamin D. We also know that sun exposure increases vitamin D levels. The dilemma is that sun exposure is known to increase the likelihood of melanoma incidence.

Since my diagnosis, my approach has been to still get some sun exposure, but do it responsibly (i.e. no midday sun, no extended periods, reasonably well protected with sunscreen, etc.). I have actually been doing this for the past 20 years, and even though I recently got diagnosed with my melanoma, I feel quite confident that IF it was a result of excess sun exposure that it was in my younger years when I did not practice more responsible sun habits.

As I continue to ponder my approach, here are some questions that hopefully some knowledgeable people have some insight on:

Are supplements as good as natural sun exposure? I suspect that they are not, although they likely help and I am taking them now.

Does it make sense for everybody with melanoma to get their vitamin D levels tested just to see if it is abnormally low and would warrant more aggressive action?

Does using sunscreen eliminate the natural absorption of vitamin D from the sun? I know that it blocks the harmful rays, but are those the same rays that give us our vitamin D?  

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Rita and Charles's picture
Replies 5
Last reply 5/1/2016 - 8:03am

We may be traveling and need to establish an east coast relationship w a melanoma specialists. Any recommendations??

Rita

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sseuregitong's picture
Replies 7
Last reply 5/1/2016 - 12:33am

Hi everyone,

I was recently diagnosed with a large (10mm) melanoma behind my ear. I'm a 30-year-old male in fairly good health. As far as I know, I have no family history of melanoma except a half-sister who was diagnosed with stage I about 10 years ago and has had no further complications. I live in Korea, where melanoma is extremely rare. I don't speak the language well, so my treatment has been very stressful and often confusing. My test results so far have been good, though.

PET/CT - no evidence of distant metastasis

Ultrasound of lymph nodes - no evidence of metastasis

Wide excision biopsy - no evidence of local metastasis

While I'm of course happy about these results, I have a few concerns about my treatment here.

1) I did not have a sentinel node biopsy. From what I've gathered online, a sentinel node biopsy is standard procedure for Stage IIC, especially for a melanoma as large as mine. I will be asking my oncologist about this when I see him again in a couple days.

2) My dermatologist told me that one year of high dose Interferon Alfa injections is mandatory treatment for Stage IIC in order to prevent recurrences of melanoma. However, when I met with my oncologist, he told me it is optional, and many doctors think the severe side effects outweigh the potential benefits. Further research online suggests that Interferon is not particularly effective in reducing recurrence rates. Is Interferon necessary/worth the risk for treatment of Stage IIC?

Thank you for your help!

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MELK's picture
Replies 5
Last reply 4/30/2016 - 7:13pm
Replies by: Issy, MELK, gm77, Momofjake

Hi All, 

This is my first post. 

I was misdiagnosed with stage IV breast cancer in August 2014, and put on chemo for 4 months. This misdiagnosis was because I had a tumor in my breast and it is very unusual for melanoma to metastasize to the breast. I also had lesions in my lungs, liver and bones. 

I was given Braf/Mek combo in January of 2015. It worked. Lots of my tumors were gone, only a couple in the liver remained. I was feeling really well. I had been doing lots of bush walking and going to the gym. I had gone back to work and was feeling great. 

In January, 2016, I went to the gym and the next day I thought I must have overdone it, as that’s what the pain felt like. After three days though, the Panadol were not working. I had really strong pain all around my rib cage, in my legs and my arms. I saw a GP to get some stronger pain killers and found out I had very low oxygen levels, so I went to hospital. 

My bloods were quite alarming. My haemoglobin and platelets were very low and my LDH reached 21,000. My oncologist and his team were puzzled. I also had some fluid on the lungs, which I had drained and analysed for any infection or cancer cells. No infection or cancer cells found in the fluid. I also had an MRI of my spine and a biopsy of my bone marrow. The cancer had gone into my bone marrow. At first my Oncologist thought it could be a completely different cancer, but it was determined it was the melanoma. Apparently it is very unusual that melanoma metastasize into the bone marrow. I not only had the cancer spread to my bone marrow, but I had more tumors/lesions in my liver and many in my thoracic and lumbar vertebrae and pelvis. I was on high doses of Oxycodone and I had to have several blood and platelet transfusions. Then I was put on Keytruda.

After a week or so and a few more blood transfusions, my bloods came right and I went home from hospital. I was there for 21 days. I was so not expecting “getting resistant” to look like that.

I am having some success with the Keytruda, although experiencing some auto immune of the liver and we are dealing with that presently. 

Mel 

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Ginger8888's picture
Replies 12
Last reply 4/30/2016 - 12:30pm

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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Replies by: Emma_Melbourne, stars, Anonymous

I am in Australia, and just diagnosed, and I wasn't given staging which fits the model that Americans are using.

 

Can someone tell me what stage you regard this as in the USA please?? (I know it's below the epidermal and into the dermal layer.)

 

Here's the info I have on my Synoptic report:

Malignant melanoma, superficial spreading subtype

Site: Right forearm

Clark level: 2

Breslow thickness: 0.25 mm

Ulceration: absent

Cell type: Epithelial

Mitotic index: Nil

Lymphovascular invation: Not seen

Neurotropsim / desmoplasia / satellites: Not seen

Features of regression: Present

Associated naevus (type): Displastic junctional naevus

 

Microscopy:

There are atyypical melanocytes at the dermo-epidural junction and small numbers of atypical melanocytes in the papillary dermis. The junctional melanocytes show nested and confulent growth and pagetoid spread. The dermal component is surrounded by a dense lymphcytic inflammatory infiltrate.

 

Thanks in advance for any help you can give me.

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m355's picture
Replies 6
Last reply 4/29/2016 - 7:02pm
Replies by: m355, Anonymous, Mat, Janner

I have had 2 MIS and one stage 1a.  Derm said it might be a good idea given my history.  No one in my family has had melanoma, well immediate.  My grandmothers father did. So I guess that counts. I do have alot of atypical moles. I mean it would be good to know if this is genetic but at the same time does that increase my worry even more? I am already a worry wart of this stuff.  indecision

Let go let God! Looking back will never move you forward!

MIS  (9/2012)

MIS  (2/2016)

MIS or stage 1A, mitotic rate 0, no ulceration, .32 Breslow (4/2016)

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m355's picture
Replies 0

so since this last biopsy is hard to call between a MIS or stage 1a, they are sending my stuff off to get this molecular test done.  Anyone had it?

 

Biopsy showed melanoma in situ on epeidermis but well organized in dermis with no mitotic rate, no ulceration.  They measured the breslow depth at .32.  So they are treating as clarks level II (stage 1a).  The reason they are confused is the mole is showing 2 features for both cases and went ahead and measured the depth (begnin moles have a depth to just no need to measure..or reported as they are begnin). 

 

I believe to be stage1a, as MIS in on epdidermis only, but severeal of the dermapatholigsts believe it could be a MIS that had not made its way down into the dermis yet resulting in stage 1a.  

 

 

 

Let go let God! Looking back will never move you forward!

MIS  (9/2012)

MIS  (2/2016)

MIS or stage 1A, mitotic rate 0, no ulceration, .32 Breslow (4/2016)

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MELK's picture
Replies 6
Last reply 4/29/2016 - 2:24pm

I had melanoma on mt liver but then it went into my bone marrow. I was put on Keytruda and had a few blood transfusions and according to my blood results the Keytruda killed the cancer in my bone marrow. It saved my life. I had three infusions all up but then got the side effect of liver autoimmune disease, where my own body was attacking my liver, inflamming it and blocking the bile duct and giving me lots of stomach aches. I was put on steroids and had a two week break from the Keytruda.
Two weeks after going back on the Keytruda, I started getting pain in my back. A CT scan showed new tumors in my spine, cervical and thoracic.
My Oncologist says the cancer has become resistant to the Keytruda, in other words the cancer is blocking my T cells from killing them.
I am wondering if anyone has had similar experience. I had another Keytruda infusion today as I want to give it a couple more goes, bug i am also thinking i could ask about other PD 1 drugs.

Being positive for everyone out there
Mel

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laulamb's picture
Replies 14
Last reply 4/29/2016 - 1:03pm

Hello! 

I has a melonoma on my back and had wide area incision and sental lymph nodes removed.  The surgeon called to tell me cancer was found in 1 of the 3 lymph nodes but it had not broken through the capillaries.  He said that was very good.  Can someone please explain that?  He would like to remove more lymph nodes but I told him my oncologist had a PET scan set up for this Friday 4/29 and I am meeting the oncologist to go over the results on 5/3 in the morning and then follow up appointment with the surgeon in the afternoon of 5/3.  

The surgeon wants to wait to see the PET scan results (surgeon did say, which I am sure will be negative) and then will discuss with the oncologist the next step. 

I guess this would make me Stage III ... Can anyone give me any recommendations or feedback from this information?  

I am very sad and trying to hold it together but I was so expecting to hear there was no cancer in lymph nodes. I even met with the oncologist before surgery and he assures me with my tumor size of 1.3 mm I had nothing to worry about.  

Thanks in advance for any replies.

Laura 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/29/2016 - 8:27am
Replies by: JuTMSY4

My husband is stage 4. Had his 12th treatment of opdivo and now developed a fluid Pocket around his elbow about 3 inches from where they removed his tumor on his arm. He does not have any pain so i don't think its bursitis. He's had it for a week now. Any thoughts please??

Bin

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Paul26l's picture
Replies 2
Last reply 4/29/2016 - 6:42am
Replies by: Tamlin, m355
Dear All,
 
I have found this forum as I am seeking advice regarding my histopathology results and I've decided to post a new topic since I believe that I will find people here who will be able to advise me. I will be genuinely grateful to anyone who would like to read it or assist.  If there are any doctors  who would like to share their opinion I would be indebted too.
 
I am 26 year-old white man ( from Europe) who has blond hair, blue eyes and plenty of moles ( more then 50) on my entire body.
But my story starts now: I had a mole excised.  The mole was localized on  the fifth toe of the right foot.
I received a recommendation to have it removed from my dermatologist which I followed.
I can't remeber for how long this mole was present on my toe, however, I noticed it around 1,5-2 years ago, but I did not consult it with any doctor that time. The mole never hurt or bleeded.  
Now I received the results of histopathology which is: "Naevus Spitzi compositus pigmentosus ( Excisio completa)".
 
I am worried since I have read about the cases where melanoma was erroneously recognized as a Spitz Nevus.  It happened due to the the fact that Spitz Nevus and melanoma show a very close resemblance to each other and are challenging to be differentiated.
Therefore, I am seeking further advise how to proceed with that.  I would like to ensure myself that my mole was a Spitz Nevus instead of melanoma  in order to reduce the likelihood of incorrect diagnosis. I have found out that sometimes FISH tests are carried out to examine such sample more extensively.
I also attach the videodermatoscopy image of this mole that I had done before it was removed.
 
Is here anyone who has some experience with Spitz Nevus and would like to share it or advise? .
 
My private e-mail is paulleman26@gmail.com if anyone would like to contact me directly.
Thank you in advance for all your feedback and your time.
Paweł

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calval63's picture
Replies 2
Last reply 4/28/2016 - 11:48pm
Replies by: calval63, Janner

I was diagnosed last week with melanoma on my upper chest area.The Pathology report says it is the superfical spreading type, was non ulcerated, had a Breslow thickness of 0.28, Clark's level of 2. The dermatologist referred me to a plastic surgeon who is setting up my surgery with a general surgeon who will do a SLN and a wide local excistion. They said it will take up to 5 days for the pathology report to come back and that it will be left open (covered with dressings) until then and then the plastic surgeon with close it up with a flap.

My question is, I am out of town and by the time I get home and scheduled for surgery it will be another 3 weeks. Will  that be too much time to let this go? Should I cut my trip short and get home (assumming the Dr will get me in sooner)? The Dr seems to think it will be ok but I am worried. Would appreciate any advice.

Thank you for reading this!

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