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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Anonymous's picture
Anonymous
Replies 3
Last reply 6/23/2017 - 1:11pm

I've been experiencing some sharp pain in my right lung for 3 weeks or so. It's not unbearably painful and doesn't effect breathing etc. I did not have lung mets per most recent scan, but that's obviously the worry. What's best way to discuss this with onc in a way that doesn't lead to "pull the immuno drugs because this may be immune related"? Is there a scan that would give us a good idea of what's going on? Has anyone had similar pains that were a false alarm?

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There have been many questions about this type of blood test on this forum and I've been posting about it for years.  Now, there's this:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-circulating-dna-to-measure.html

I'd say it's time to make this a reality, right????  Happy Friday!  Celeste

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Anonymous's picture
Replies 2
Last reply 6/23/2017 - 12:34am
Replies by: Anonymous, Jamie1960

Hello, I am hoping someone can help me understand this pathology report a bit more. I have not yet been able to see a doctor to have them explain it to me. I understand the gist of it but the dermis portion in the microscopic description I'm thrown off by. I had a small mole that I cannot see change recently. Its approximately 8mm wide and in the crack of my buttock so its very hard to see. My family doesn't want me to see a general surgeon for this and would rather me go to a Melanoma Center to have it properly handled. We live in small area with limited services. Any help interpreting this report would be very appreciated. Thank you so much.

It says-

Final Diagnosis

SKIN, RIGHT BUTTOCK, PUNCH BIOPSY:

COMPOUND MELANOCYTIC NEVUS WITH ARCHITECTURAL DISORDER AND SEVERE CYTOLOGIC ATYPIA OF MELANOCYTES

MARGINS POSITIVE.

Comment: based on the amount of cytologic atypia and partial sampling, a re-excision of the remaining pigmented lesion is recommended for further diagnostic consideration.

Gross Description

Received in 10% neutral buffered formlin labeled Right Buttocks Mole, is a grey tan skin punch biopsy specimen measuring 0.3cm in diameter and exised to a depth of 0.5cm. Tissue is inked and submitted whole in cassette 175k-4257 dh/STH:lw

Microscopic Description

Sections show skin with a melanocytic lesion having extensions of the junctional component beyond the dermal portion. In the epidermis, melanocytes are disposed as single cells and as nests on elongated and distorted rete ridges. Cytologic atypia ormelanocytes issever. The papillary dermis is fibrotic. 

Clinical History

37/F with disorder of skin and subcutaneous tissue.

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Newmanbell's picture
Replies 5
Last reply 6/22/2017 - 11:07pm

My husband Mark, who is Stage 3b, had 3 infusions of ipi and cannot continue the 4th due to side affects is on a high dose of prednisone now and trying to start wean him off.  I read somewhere that this steroid is known as “Satan’s tic tac”.  I can certainly see why.  My husband who is never grouchy, wired, hyper, or weepy, is all of these things now.  I’ve never seen him talk so fast either! 

He was up all night typing like this mad professor finishing up a late project.  I asked him what he was doing and working on.  His comment is I am writing a story about all that I have been through with this cancer.  In the 26 years together, he has never done anything like this.   He said I don’t know if it is the drugs or what, but THIS will be the funniest story I have ever put together.  Mark has a great sense of humor so I really am anxious to see the final story!  Watching him furiously type, I may be retiring early due to his best seller….

You have to find some humor in all this.

 

Donna

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Marymary's picture
Replies 4
Last reply 6/22/2017 - 3:33pm

Hello...

i had a .4mm melenoma removed in January. My treatment plan is to be checked by my derm every 3 months.

i understand that I caught my melenoma early.. but can I really just "cut it out" and move on? 

Should I be switching to a specialist now that I've had melenoma? I live close to Tampa.. should/ can I go to the cancer center there? 

i just want to make sure I'm doing everything I need to be doing. I'm not a fan of being told "standard care" , I want to make sure I'm being my own advocate and doing everything possible.

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I figure you've had to make some tricky decisions by now.  How you do'in?????  c

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Hey guys, 

Just when I think, "I got this!!!"  Wow!  I get a surprise.....  For what it's worth:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-melanoma-anti-pd1-and.html

We may have to take this one with a grain of salt, a little go-gurt, a fair tolerance for BS, and a long soak in a tub with lots of soap, soap, soap!!!  Who knew ASCO humor existed????

Have a great Thursday!  celeste

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Bubbles's picture
Replies 2
Last reply 6/22/2017 - 11:19am
Replies by: Bubbles, Ed Williams

Sorry for 2 days of radio silence.  2 long work days happened!  But here's the latest:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-ipi-plus-pembro-ipi-after.html

Hopefully just 3 more ASCO posts to go!  Gotta get her done before the end of June!!  Luck and love to you all. celeste

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/22/2017 - 9:07am
Replies by: Bradley75, Ed Williams, Anonymous

I had 39 axillary lymph nodes removed 6 weeks ago. I kept the jp drain tube until this week although i still had 60 to 70 draining daily. Dr. removed drain anyway. It has been 2 days and the armpit area is tight and swelling and my breastfeeding on the affected side is swollen and slightly red. I was not given much instruction at the office at time of removal other than of a swollen ball area comes up maybe call or maybe it will go away on its own. The whole area is tight not just a ball area. Does this sound like anyone else experience and normal or should I be calling the dr.?

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jennunicorn's picture
Replies 28
Last reply 6/22/2017 - 1:42am

It's been hard to come on here lately, my heart is still broken over the friends we have lost and those that are struggling currently. 

I had a PET/CT scan this week and got some good news and some news that makes me feel a little funky.

So, the good news: the scan showed nothing new, yay!

The funky news: back in September when I had my recurrence and I had a needle biopsy on a groin lymph node and an armpit lymph node, the groin came back positive and the armpit came back negative. Initially we took that answer and started Ipi/Nivo. Since then I've had a couple of scans that showed the armpit lymph node staying enlarged and with a good amount of SUV uptake on PET.. so I had my suspicions that the armpit biopsy was a false negative and I've been stage 4 this whole time. This recent scan showed the armpit lymph node has shrunk in half and has half the amount of uptake. Groin has shrunk a ton and no uptake at all. I talked with my onc, and she confirmed that she also believes the armpit has melanoma and she has looked at me as stage 4 this whole time. I guess I never wanted to really confirm that with her, it's a hard pill to swallow knowing you've come to the end of the stages, even if it's a minimal amount. 

But, I am glad things are going in the right direction. And, if this armpit lymph node stops responding, we can always surgically remove it. 

Sending lots of positive vibes and love to everyone here going through their own war with this disease. 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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MovingOn's picture
Replies 1
Last reply 6/21/2017 - 6:57pm
Replies by: Julie in SoCal

I'm taking this PET scan as a success (but I'll be looking for the clavicle thing to disappear in the next scan).

Results statement:

"When compared to prior examination, the activity identified in the left neck, region II has resolved.

There was a mild focal area of activity seen in the region of the left proximal clavicle with no correlate on CT imaging and may represent some mild arthritic change."

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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Mommyto2's picture
Replies 12
Last reply 6/21/2017 - 5:36pm
Replies by: Anonymous, Mommyto2, coltbnme

Hello all, I read a lot on this site after my biopsy, and I received the bad news of cancer on 6/16/17. I ignored a new mole for about 5 years. Very dumb, I know. When the mole started changing in appearance, I got it biopsied. Now I'm losing my mind, I can't stop thinking about my children and the effect this will have on our family. I will post what my path report said in hopes that some of you kind souls will interpret for me. All I know is that, yes it is melanoma, and I have an appointment scheduled for 6/30 for a wide local excision and snlb. Path report :
SKIN, UPPER BACK, LEFT SHAVE BIOPSY
- INVASIVE MALIGNANT MELANOMA
SUMMARY:
HISTOLIGIC TYPE: NODULAR MELANOMA
MAXIMUM TUMOR THICKNESS: 0.96 MM
ANATOMIC LEVEL: IV
ULCERATION: NOT IDENTIFIED
MITOTIC RATE: 5 MITOTIC FIGURES PER SQUARE MM
STAGE: pT1b
This was a shave biopsy, please help interpret this for me. I'm losing it and everything I try to research is just making me more confused. Thanks in advance.

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Scooby123's picture
Replies 5
Last reply 6/21/2017 - 4:48pm

Hi all hope you all as well as can be. I am going Friday for my biopsy in nodes in chest wall. I would apprciate any one who has had it done there experience. They are going to put tube through mouth in to chest wall to get biopsy.

feeling nervous. 

Scooby x

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/21/2017 - 10:24am
Replies by: Scooby123, SABKLYN, Anonymous, NSNewf

I am currently 3a declared NED following negative path and PET in March. I had a functional neck dissection done on my left side and was declared NED. I noticed a swollen node on my right side just below my ear. I had followup with Dermatologist yesterday and he did not seem concerned. My next appointment is with ENT in October. Should Ilook to get into ENT early?  Do you think this is an area of concern?

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