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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mama1960's picture
Replies 2
Last reply 7/11/2013 - 12:58pm
Replies by: mama1960, POW

Doc just told me he would like to start me on this in the next couple of days. Having trouble finding info, any hints?

It is what it is.

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chalknpens's picture
Replies 2
Last reply 7/10/2013 - 10:55pm
Replies by: chalknpens, Anonymous

I am here to vent some frustration, self-doubt, and fear. I have so little to complain about in comparison to most here. I offer my apologies.

I've only been dealing with skin cancer for a little more than a year - treatments, that is. I've no doubt had it for years and years.
The cancer sitings have been now on my right shoulder (basal), left back(melanoma), left forearm(melanoma), right shin(basal), left calf (squamous)

It took 8 surgeries and about a hundred sutures to clear those away. I have what some of you may recall my naming "The Mark of Zorro" on my back ... seven inches long and three inches wide at the top and bottom. That's the largest of the set of five.

... I saw the dermatologist last week, had another biopsy, and he prescribed an expensive cream rather than more cryosurgery on my forehead (his suggestion.) The biopsy came back positive:  on the left side of my chin, another squamous.

If I have the first surgery on my face, I worry that I will face more to come in another three to six months. Will the next one be the spot on my nose, or among the brown 'liver spots' on my cheeks? Will I have this 'one only,' or perhaps 'just two,' and then, reasonably, 'one more?'

Or will I say, now, 'Enough?' Where do I draw the line  ... this is on top of Multiple Sclerosis ... the cognitive effects of which took me out of my career as a public school teacher. How much is too much?
 

I am not perfect, but I am enough.

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LMonty's picture
Replies 3
Last reply 7/10/2013 - 4:18pm
Replies by: LesleyKS, Lauren6, Janner

Hello,

 

I was hoping someone could help me figure out what my pathology report is saying about a mole I had biopsied. I actually have two pathology reports because it was sent for a second opinion. The mole is obviously atypical, but I'm not sure about what the rest is saying. To me, it sounds like the sample was too thin for them to be sure it isn't anything worse. The biopsy was a very thin shave. The mole is on my big toe next to my nail, so it is in a bit of a diffcult place.

I'm supposed to be having a Mohs surgery to get the rest of the mole. Does this sound like the right plan? I've read that Mohs is usually done for basal and squamous cells, and for an atypical mole I should be having an excision done, but I don't know if that will be possible because of where my mole is. My other option is to try to see a podiatrist surgeon, but I don't know if that would actually be a better option. I'm supposed to make an appointment soon, so I'd appreciate any help.

 

Pathology #1 says:

Atypical epidermal melanocytic hyperplasia - See Note

Note: Biopsy is very superficial and more severe process can not be excluded. Conservation re-excision with negative margin is recommended for the treatment and proper evaluation of the entire lesion.

Microscopic Description: Superficial biopsy of acral skin with increased number of atypical epidermal melanocytres with pagetoid spread.

 

Pathology #2 says:

Irritated lentignous melanocytic proliferation with modrate atypia, involving peripheral and deep histologic edges (see note)

Note: Complete removal is recommended for further evaluation and therapy. Multiple original and deeper step sections were examined.

 

Thanks again for any help anyone can give.

 

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vicuk's picture
Replies 3
Last reply 7/10/2013 - 3:56pm

Hello everybody.

I've got some very good news to post. My best pal Helen went for her scans Thursday and results came in today. Her lung mets are stable (they were immesurable last time) and her hip tumour has shrunk again. This time last year (almost to the day) she was hit with the news that she had MM stage iv and she had 6 months to live. She has been on the GSK trial since then and has no side effects.

I tell her all the time about the people on here that are fighting the good fight and I endlessly quote CharlieS. My job is to keep her positive at all costs and that I get from you. The community you/we've got here is so knowlegeable, supportive and caring.

Many, many thanks and I think of you warriors every day.

Vic x

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blden2186's picture
Replies 2
Last reply 7/10/2013 - 3:54pm
Replies by: Tina D, mama1960

Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/10/2013 - 11:02am

I had a mole removed in 2005 from my calf. Last year I found a lump near my knee - had wide excision done. December I had a clear PET scan then in March found a lump under surgical scar on leg. Monday I start interferon..worried what this journey will be like.

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Kev12's picture
Replies 15
Last reply 7/10/2013 - 10:56am

Hi all

 

Firstly, I would like to say thanks for all of the sharing on this forum. My first reaction to my diagnosis of nodular melanoma was to find out everything about this disease that I could and this forum has proven to be invaluable in that regard!

As with most people who receive the dreaded news, I could not believe that something like this could happen to me! I was diagnosed last week and had bloodwork done yesterday, CT scans of chest, abdomen and pelvis this morning (still waiting for the results which is freaking me out!) and I am scheduled for a lymphosintigraphy tomorrow and surgery to remove my sentinel lymph nodes on friday and also to remove more tissue etc from the site of the melanoma.

 

I have been on a rollercoaster ride this far and my moods swing from total depression to being remarkably candid about the whole thing- somehow trying to justify that I will not have any lymph node or further involvement!

 

I have literally spent hours trying to understand every word in my pathology report as it simply scared the life out of me when I first read it. 

Briefly, I have a 1.3mm nodular melanoma on the inside of my thigh just above my knee. It is not ulcerated but has a mitosis rate of 4. No satellitosis was seen nor any intravascular or perinerual infiltration. It is also listed (for what its worth) as a Clark Level III. 

 

What I cannot fing out is what the following means and it is freaking me out! Can anybody tell me what the Appendigeal Sheath is? My pathology report mentions that it is not within the appendigeal sheath? I have no idea if this is a good thing or a bad thing?

 

It seems that the melanoma has invaded my dermis (clark level III) but I dont understand how this is possible? According to the path report there is no loss of the rete ridge architecture and no fibrosis in the dermis. I am definitely not a doctor, nor do I profess to have a cooking clue about what half of this all means, but when I looked at what the rete ridge is it seems to be on the boundary of the epidermis and the dermis? If the rete ridge has not been affected then how has the melanoma invaded the dermis? They also mention that there is a mild chronic inflammatory cell infiltrate in the dermis. I have no idea what that means?

Apologies if I seem to be overly analysing all of this but I am freaked out and trying to understand exactly what is happening to me. I am holding thumbs that I dont have any mets anywhere but it is all quite overwhelming! I got married 2 months ago and it freaks me out to think about what I am most likely going to put my (incredibly sweet and amazing and supportive) wife through. The guilt is overwhelming.

 

Thanks

 

K

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

Login or register to post replies.

Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

Login or register to post replies.

Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

Login or register to post replies.

LesleyKS's picture
Replies 5
Last reply 7/9/2013 - 2:27pm
Replies by: LesleyKS, trippettl, Janner

Hello all.  I am a 34 year old female who has had, in less than year: Melanoma In Situ on left leg, pre-melanoma on back, several severe atypia and now a new one that I don't understand the pathology report for and would like anyone's help in understanding it.  My doctor wasn't really explaining it to me and I am wondering if that is because it is inconclusive?  This pathology is for the initial shave biopsy, I have already gone back and they did a punch biopsy on the site to remove more tissue.  I am still waiting for the pathology report for the second removal.  Here is the report:

"Submitted is a single cell slide of  shave biopsy material that shows a compound melanocytic proliferation composed of epithelioid cells within the epidermis primarily seen in confluent single cells along the lower epidermis and with rare cells in the spinous layer.  The dermal component consists of nested epithelioid cells as well.  The proliferation is transected at the base.

Diagnosis: Skin, right posterior neck, compound melanocytic proliferation with epithelioid cell features, extending to the tissue margins.

COMMENT: The differential diagnosis includes a compound nevus with spitzoid features versus an atypical spitzoid tumor.  The lateral and deep tissue margins are involved and therefore because circumscription is not seen, re-excision with appropriate margins to ensure complete removal is recommended"

I had never heard of Spitz or spitzoid before and my doctor didn't explain it to me.  Google search are unhelpful and at times frightening so I would greatly appreciate any explanation any of you can provide.  Also, does anyone recommend sending the slides to someone else to get a better, more clear, diagnosis?  Or should I wait for the second pathology report?

Thank you in advance for your support.

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Tim--MRF's picture
Replies 2
Last reply 7/9/2013 - 12:27pm
Replies by: Tim--MRF, POW

GSK just submitted an application to the FDA for their two new melanoma drugs to be used in combination.  This is a BRAF inhibitor, dabrafenib, and a MEK inhibitor, trametinib.  Studies have shown that these drugs work better in combination than either do alone.  I think most people expected they would be prescribed in combination, but getting this approval, if it is approved, will help smooth conversations about off-label usage and reimbursement.

http://www.gsk.com/media/press-releases/2013/GSK-announces-US-submission-for-dabrafenib-trametinib-combination-in-metastatic-melanoma.htmlTim--MRF

Tim--MRF

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Tina D's picture
Replies 17
Last reply 7/9/2013 - 9:45am

Sorry to be so long in posting. My mel specialist ( in St Louis) consulted with a surgeon who said that getting a biposy was not something he felt was feasable with my tumors being so deep, and my long surgical history. This was difficult news to recieve! But, thank you to a dear friend who was able to think quickly and clearly ( thank you, Amy!) I now have an appt in Nashville to discuss the Pd1 trial there. One thing that poses a possible denial is my prednisone dosage after the autoimmune response to ipi. I am still on 5 mg prednisone, and that is not a problem, but they have to decide if the dosages, and tapering, fit in with the strict trial guidelines. I have not been able to be on here much due to ongoing set-backs from my husband's back surgery, but will try to post after my visit to TN. Still feeling wonderful and am SO thankful to be here to celebrate our youngest child's 14th birthday today! She was 2 years old when I was first diagnosed with both breast cancer and melanoma within 6 weeks of each other. Yes...I am very blessed to still be here and be able to kiss her sweet cheek this morning and wish her a happy birthday :-)

Tina

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flvermonter's picture
Replies 2
Last reply 7/8/2013 - 10:58pm
Replies by: flvermonter, POW

Hello,

We met with a Medical Onc at Florida Cancer Specialists today.  He reviewed my husbands records and suggested he take taxol while getting his radiation.  The radiation is for the lung cancer and the melanoma.  He then said after the radiation is complete start on Yervoy.  That is unless the next petscan shows other spots.  In that case then would suggest he start on the yervoy instead.  His next PETscan is a week from Wednesday. 

Any thoughts or experience with receiving radiation and taking either taxol or yervoy?

Thanks, Mary

Hugs to all, patients and care givers.

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AllyNTAus's picture
Replies 9
Last reply 7/8/2013 - 10:52pm

So I went for my scans and reviews today at the end of cycle 4 on the Novartis BRAF/MEK inhibitor combination. I had a feeling that things might not be looking all that good because I just haven't been feeling 100% well for the last few weeks, nothing really solid I could define except for some very grumbly, gassy abdominal symptoms that have waxed and waned, so if anything I was thinking there might be something going on in my intestinal tract.

What I wasn't expecting was to be told that I have a fairly large cardiac met, 30mm diameter, 40mm high, in the right atrium. What surprised me even more was to see the report saying that this met was apparently "more subtle" and somewhat smaller on my previous 2 scans (May and April), but the reports on those two scans didn't mention it at all! I'm a bit bemused and peeved about that.

Various lymph nodes throughout my lower abdominal/pelvic region have grown too and there are some new nodules showing up, so it has really taken off.

So I am seeing a cardio thoracic surgeon on Wednesday to discuss the possibility of surgical removal. If this isn't possible then it will be radiotherapy. Clearly the cardiac met is serious stuff and needs some immediate aggressive treatment. After I am well enough the plan is to start on Ipi, which thankfully has just been put on our government subsidised medicines list. And my doctor tells me that if Ipi doesn't work then
Anti PD1 should still be an option, there are just not any trial seats for it (either alone or in combo with Ipi) just at the moment.

Aargh what a rollercoaster! Would be interested to hear from anyone else with experience of cardiac mets.
Ally

A bad day's fishing beats a good day's work everytime

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