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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nlac26's picture
Replies 10
Last reply 5/19/2016 - 9:39pm

Hey everybody! April 14th ended my first cycle of the clinical trial I'm participating in. What a blessing to say I finished without any problems or major side effects. My study involves Nivo infusions every 2 weeks and I take two pills a day of what the Trial coordinators are now offically calling "epacadostat" instead of some big long number. It's always an interesting trip to the hospital every couple weeks because you never know what new thing the trial people have come up with that has to be included. One trip it could be, we now need 2 EKG's, one before infusion and after...or a stair walking stress test or more blood. I never know, I just roll with the punches and am very fortunate to have a wonderful, humourous trial coordinator I work with every single time. Sometimes we get to joking and laughing so loud I'm sure they can hear us all the way down into the waiting room. Hey, if I've got to be there, it's nice to have someone that can make me laugh and who's standing in my corner fighting for my well being too. 

I had my first follow up CT on April 25th which is standard for the end of each cycle. We had held out for great news and some what recieved what we prayed for...but as we all know, melanoma is a tricky bitch and can surprise you on a dime. My original tumor in my left axillary lymph nodes measured 25 x 23 mm on 02/19/2016. After one full cycle of treatment, it has shrunk to 24 x 19 mm. I mean, that's not the best but at least it's not growing! And that's only 4 infusions so far. The weird part about the scan was the NEW tumor that popped up right next to it, side by side, measuring 25 x 18 mm. Talk about a jaw dropping moment when the doc first pulled up the scans. But what I was told and what my scan read out as,  it is indicative of necrosis and more than likely dead. What?! So, in a matter of 8 weeks, I had another large tumor grow and then just die? Has anybody else had this before? It's hard to know what to feel exactly. Sucks there's a new spot but if it's dead then should I throw a fit or just move on? The doc did say there is no certain way to tell if it's completely necrotic without removing it and we're not opting for surgury right now. We decided to stick with the plan and trial and keep pushing forward. Last Thursday the 28th i had my first infusion of cycle 2. I'm fortunate the drugs don't bother me too bad. I'm like a sleepy zombie when I walk out infusion days and I nap pretty good for a couple days, then it's back to work and life like normal. My husband and I actually ran a 5k Saturday morning and it felt awesome to be out moving in the fresh air.  Here's to keepin' on and reaching forward! God bless all of you out there and best wishes! Niki

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/3/2016 - 5:50pm
Replies by: Edwilcox, Janner

Background - I've had 5 biopsies in the past year, two resulting in moderate to severly atypical cells that required excisions.  Fair skin, used to tan and not use sunscreen pretty regularly.  

I just went in for my yearly skin check.  Had four more biopsies done.  Still waiting on those results.  In the meantime, I'm worried about three spots on me that I was told to "wait and watch".  One is a large mole I've had for years, although it's on my lower leg and that entire general area seems to be itchy (not just the mole, whole shin, although sometimes the mole) that I don't think has changed, but I could be wrong.  The other two are newer and look slighty bad, but aren't very big.  

So, the question is, should I have insisted those get biopsied, too?  Should I wait and watch?  Should I call back and ask to have them biopsied as well?  Wait on results from the others and go from there?

Thanks!

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eturner82's picture
Replies 5
Last reply 5/5/2016 - 11:37am

 

Hi Guys,

I wanted to share this with you in memory of my husand.

 

http://www.whsv.com/content/news/Valley-woman-spreading-awareness-of-Mel....

Emily Turner

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Charlie S's picture
Replies 5
Last reply 5/3/2016 - 10:31pm

It is almost an out of body experience.

Getting the central line shoved down your neck to start is the first insult.

That is far from the first funjet though.

When they hang that first bag of aldesleukin brought up from the lab by security because the price tag is a tick more than 7 grand,a copy; well, you know this ride is not going to be cheap, let alone easy.

Then it starts to kick your ass with a soft shoe.

The first sensation  is a sort of chemical thing that hits the brain that tells you there are drugs coming into your body.

Then your body starts to tell your brain that yes, you are under the influence of toxic chemicals; and in response your brain says "yeah, I know that"

It is a strange sensation..

I want no judgement posts about what I am doing right now nor sympathy.

I'm just reporting what is the start of one bag every eight hours of my choice to start.........again.

Melanoma is not for sissies.

Cheers,

Charlie S

 

 

 

 

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Randy437's picture
Replies 3
Last reply 5/3/2016 - 3:21pm
Replies by: Anonymous, Randy437

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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Rita and Charles's picture
Replies 6
Last reply 5/4/2016 - 3:11pm

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

Rita

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spiderman's picture
Replies 6
Last reply 5/22/2016 - 6:19pm
Replies by: Anonymous, spiderman, keepthefaith11, Bubbles

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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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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Anonymous's picture
Replies 2
Last reply 5/3/2016 - 8:35am
Replies by: debwray, 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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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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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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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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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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m355's picture
Replies 1
Last reply 4/28/2016 - 1:21pm
Replies by: Janner

This one is a doozy!!! As much as I would prefer a MIS, it appears to me a stage 1A since there is a breslow depth of .32.  They are treating as a stage 1 which I am okay with being aggressive.  I am having sent to my other dermapathologist back home for his review too.  Of the 4 derm path. 1 said MIS, 1 undecided, 2 for stage 1.  The mole appeared new or was a super light freckle (cant really tell on my professional pictures).  The 0 mitotic rate is throwing them off too...

Here is lab report:

A) Skin, right upper back, punch biopsy: Severely
atypical compound melanocytic proliferation, see
Comment.

COMMENT:
This is a worrisome lesion, with epidermal atypia
(pagetoid extension, confluent growth) consistent with
melanoma in situ and a dermal component that also
demonstrates atypia with areas of morphologically
similar cells to the epidermal component, but also some
 reassuring features (dispersion with increasing dermal
 depth, absence of mitoses). These findings engender a
differential diagnosis that could reasonably include
melanoma in situ evolving within a dysplastic nevus or
a superfically invasive melanoma. Given this
differential, it would be reasonable to treat this
lesion as if it represents a malignant melanoma with
the following prognostic factors: Breslow depth 0.32mm,
 Clark's level II, 0 mitoses/mm2, no ulceration.
 

MICROSCOPIC DESCRIPTION:
A) Sections show a punch biopsy with a compound
melanocytic proliferation. The junctional component
shows crowding, with fusion between adjacent rete and
horizontal nests. Areas of upward extension of single
melanocytes and nests are seen, and highlighted by
Melan-A. Intraepidermal melanocytes show cytologic
atypia, with nuclear enlargement and abundant
cytoplasm. A patchy lymphohistiocytic inflammatory
infiltrate is present. The lesion is free of the punch
biopsy margin. Additional step sections are examined.

 

 

Melan A test is positive
 

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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Scooby123's picture
Replies 1
Last reply 5/3/2016 - 2:33pm
Replies by: WithinMySkin

Hi guys,

Anyone got any good travel insurances due to having a brain met treated resent my travel insurance company will not insure me . Some ones I've tried which say been turned down for travel insurance try us have been within the 2000 pounds mark. 

Hope you all having a good day 

Scooby23❤️

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