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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dawn dion's picture
Replies 5
Last reply 5/5/2011 - 4:26am

Okay I know I asked this earlier in a reply to msmarilyn but I thought I would post this question out right because I am really curious.   I get a lot of joint pain and muscle fatigue, mostly  if I do a lot of walking .  I will feel if for days afterwards all through the bottom of my hips, thighs and calves.   This is not something that would have happened before so obviously it is from the drugs but I was curious if anyone else was having these issues and if so what has been done about them.   I  don't intend to slow down because I have two kids and I will continue to do all I can with them so I need a game plan,  Sunday I got to the point of being so sore I had a hard time walking. (really pissed me off)  My DR. asked me if it was interfering with my life when I was there last week and at that point I really kind of blew it off, because I am far from a whiner and will put up with a lot, but I am beginning to think that it could.

Anybody out there got any suggestions - I am open to any and all.

Thanks for the insight

Hugs and Smiles

Dawn

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/4/2011 - 9:46pm
Replies by: Vermont_Donna

I just came back from attending the Stowe (VT) Weekend of Hope - now in its 11th year.  This was my first time attending. What a great event!  Held the first weekend in May each year, the weekend offers the chance for cancer survivors and their families to convene in the beautiful and welcoming town of Stowe, Vermont for 3 days of activities - or just relaxation.  As a first time attendee I was eligible for and received free accomodations in Stowe  - and the actual conference was free.  Organizers noted that the Inns and Hotels around Stowe donated some $90K in accomodations to this year's event for first time attendees!  The online registration process and follow up phone call to register for the accomodations was painless.

There were over 410 survivors registered this year representing over 16 types of cancer.  While the color pink was out in force, I never found it overpowering.   Survivors were able to find common ground pretty easy regardless of their diagnosis. (Say 'steroids', 'chemo', or 'health insurance' to anyone and there was an instance bond/discussion).  The conference like atmosphere offered a number of sessions regarding specific cancers with discussions by doctors,  to more broad topics of interest to many - relaxation/self-hypnosis,  what's next after cancer, etc  offered by patient survivors turned advocates or other types of specialists.  I chose to attend many of the sessions and still had some time for R&R.   While most attendees were from New England, NY, PA, there were some from across the US.  There were many returning attendees who mark their calendars each year to come and bond with other survivors and/or reconnect with their families in Stowe.   I will be one of them for the 2012 event!

For info on this year's event:  http://stowehope.org/ 

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thebunches's picture
Replies 2
Last reply 5/4/2011 - 9:07pm
Replies by: Janner, thebunches

My husband's initial biopsy path report is below... how can his Clark Level be VI but also have a Path Stage of T1a? What does this mean? (We have our first appt with the surg onco doc on Monday, and getting through this weekend is not going to be easy.)

______________________________________________________________

Malignant Melanoma

Thickness: 1.0 mm

Clark's Level: IV

Growth Phase: Vertical

Ulceration: Not Identified

Mitotic Rate: <1/mm2

Angiolymphatic Invasion: Not Identified

Features of Regression: Not Identified

Lymphocytic Host Response: Non-Brisk

Pathologic Stage: T1a

Microscopic:

Atypical Melanocytes are present within the epidermis and the papillary and reticular dermis. There is confluent melanocytic proliferation at the dejunction. Atypical spindle melanocytic proliferation is seen within deep dermis along with fibroplasia. Speail immunohistochemical stains melan A and S-100 helps to identify melanocytes and outline their distribution. Melana stain demonstrates pagetoid proliferation of melanocytes. Multiple levels are examined.

Comment:

The lesion extends to the base of the specimen. Reexcision for clear margins is recommended. 

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sharmon's picture
Replies 4
Last reply 5/4/2011 - 8:48pm

He was on Mek alone for over 14 months and was stable after a 25% reduction.  In Feb. he increased in two tumors by 23% and was removed from that MEk alone trial.  He had his first infusion of the Pemetrexed chemo a week ago along with a dose amount of 1.5 mg of MEK .

We want you to know that he feels that the discomfort he was feeling at the end of the Mek alone trial is much better.  Brent is BRAF negative and negative for all the mutations that MDA has to ability to screen. 

The side effects from the Pemetrexed chemo is mild.  Slight flu like feeling and some fatique.  Pemetrexed is a chemo use for lung cancer. 

God Bless you all and each one of you are important to us.  Just knowing you are there helps us know we are not alone.

Sharon

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/4/2011 - 7:34pm
Replies by: Anonymous, Rocco

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o2bcheri's picture
Replies 9
Last reply 5/4/2011 - 11:23am

Hi everyone...

it is so strange... I came here because my best friend ever found that his melanoma had spread to one lymph gland after 2 yrs....

he is so busy.. and I come on here every day to learn as much as i can to help my friend..

then... yesterday.. my brother called.. and told me he has some sort of lesion on his arm.. the derm did not like the look of it and made appt

to take a "plug" and have it tested... my brother had had basal cell in the past.. and he seems to think that is what it is again.. but.. i am worried..

he said it is crusty and itches.. and the word "plug" scared me as i have heard that word here associated with biopsies of suspected melanomas..

does anyone know if taking the plug means the dr thinks its melanoma rather than a basal cell carcinoma.. i have said nothing to brother as he

is nervous already... of course i told him that basal cell is not life threatening.. and to relax...

question two is...

has anyone here tried the alkaline diet??? changing the PH of the body to alkaline rather than acid???? i have read a lot about cancer not being

able to live in an alkaline environment.. and clearly... this would be most effective if started BEFORE the cancer takes hold.. or even grows at

all..

have any of you heard of this.. or tried changing your PH.???

would like some feedback on this... my best friend is doing it.. drinking alkaline water.. macro biotic food..no drinking.. no smoking.. etc etc..

i am hoping that this is a good plan of action.. or am i just being pollyanna???

 

thank you all for being you.. i have gotten involved and care so much about you all..

prayers for each and every one of you.. each night.. and always in my thoughts..

 

thanks.. michele 

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Eugenia's picture
Replies 3
Last reply 5/4/2011 - 8:02am
Replies by: Janner, Eugenia

Here is my SIL's pathology report:

Skin, left leg lesion:  Melanoma in situ

Comment:  It is not known if this is a biopsy of a larger lesion or an excisional biopsy.  Due to small size, fragmentation and orientation, the margins cannot be adequately evaluated.

Skin, Left Leg Lesion:  Received and labeled “lesion L leg,” is a .2 cm portion of dark brown-gray tissue that is submitted as received along with a smaller minute fragment.

Clinical info or preop diag:  None given

Microscopic Description:  The sections consist of levels of two tiny fragments of skin with a melanocytic lesion.  There is a lentigenous melanocytic proliferation;  focally the melanocytic cells are see in the superficial portions of the epidermis.  Cytologic atypia is mild to moderate.  No mitoses are seen.  A few lymphocytes are seen in the underlying dermis.  Fragmentation and orientation preclude evaluation of the margins.

**any misspellings are most likely mine! :)

This is the pathology report that caused the general practitioner to want to do a punch biopsy before a full excision.  Instead, my SIL asked to be referred to an oncologist and now has an appointment scheduled for tomorrow (Wednesday) with the oncologist, who may want to do the exact same thing, but will at least know what he is doing or send her to someone who does.  Also, she has an infection in the wound caused by the shave biopsy, and was given an oral antibiotic for the infection.

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beatricefromPARIS's picture
Replies 3
Last reply 5/4/2011 - 6:15am

Hi all,

Had 4th ipi injection a week ago

so far, it's a walk!

no adverse reaction apart from fatigue and occasionnal mumbling of the tummy

can't tell yet if response because tumors are all inside, not visible

last blood count indicates depleted red cells but that was due to previous treatments and new one :higher than normal eosinophil count. No idea what that means...Any info ?

 

Beatrice stage IV

 

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Anonymous's picture
Anonymous
Replies 13
Last reply 5/4/2011 - 3:06am
May the remainder of her journey be as peaceful and pain free as possible.
 
From her Facebook page 13 hours ago:

Hello everyone. It's Amy's sister, Julie. Quick update...Amy has taken a turn for the worse. The past two days have been pretty rough on her. We want to thank everyone for their continued prayers. Visits are still welcome please just call and schedule with Heather, myself, or Dennis first. We love you all.

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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nickmac56's picture
Replies 13
Last reply 5/4/2011 - 12:25am

As I've documented recently, my wife, Stage 4 melanoma, Ipi non-responder, skin and lung mets, and now brain tumors (one of which burst causing her to undergo brain surgery), is at home now, recovering. There is sort of a game plan with our trusted oncologist, when her brain calms down a bit more we will likely meet with a radiologist to discuss radiation (gamma or cyberknife) to address remnants of the tumor removed during surgery and the other known one in a different location. (we are obviously knocked out of the NIH trials we were scheduled to attempt). I've spent quite a bit of time this weekend trying to understand realistic outcomes for melanoma patients with brain mets and figuring out how to help her understand quality of life issues when looking at treatment options and their side effects relative to life extension. The statistics and prognosis generally for someone in her state are not good. I know all the arguments about how each person's experience will vary and I'm not proposing we give up. But I have two college age kids who want to understand what the course of events likely will be in order to prepare themselves. and I have a wife who is somewhat cognitively impaired from the stroke, and frankly is in quite an anxiety free and positive mood. So I am more than unclear about how to talk to my young men about their mom, let alone whether and how to help my wife understand her situation without upsetting or confusing her (is blissful ignorance better than knowledge?). If she knew the probable outcome she might start taking some actions now (letters to her boys when they marry, etc). Or do I just leave it to the oncologist and radiologist to break the eventual news?

Anyone been in this situation with advice?

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Rendergirl's picture
Replies 12
Last reply 5/3/2011 - 9:19pm

I think I might be getting mine removed tomorrow or the next day, under arm. Question.... did it hurt anyone? Looks like I have a stitch or two in the skin around it. I'm a little scared, I know it's silly, after surgery to be scared of getting the little drain removed, but I am.

Any experiences?

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/3/2011 - 9:19pm
Replies by: Jackie W, Anonymous

I have been reading profiles and was wondering why so many people have different stages between diagnosis and current stage? Is it that you are incorrectly diagnosed at the beginning or is it that your disease advance?

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5/1/2011
8:41am
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I had a place taken off my cheek a month ago  by a shave biopsy and 2 weeks later the biopsy results came back and then said it was Melanoma Insitu Clark Level 1 which said it was superficial and only on the outer layer of the epidermis.  I went and picked up my report and after looking at it was confused because it had the doctors name that reviewed it (dermapathologist) but my doctor had signed for him and they also mentioned on the report that I had a history of melanoma.  Why would they need to state that on the pathology report?  The first review from him stated Atypia and then the final review was melanoma Insitu.  Anyways, I requested my slides from the dermatologist office and picked them up before my appointment with the plastic surgeon at Vanderbilt this past Thursday.  After looking at my report he also thought it looked a little strange.  I told him that I had my slides and would like someone at Vanderbilt to review them and he said oh good so he sent them down while I was there.  He went over 2 options to take care of this which were.....if he did the excision he would take .5cm all the way around.  He also told me about Moh's which he said may be the better option for me since they check the tissue as they go and can make a smaller scar.  I told him that would probably be the option that I would go with.  On Friday I get a call from the Moh's people at Vanderbilt that he had referred me to saying they had received my pathology report and no where on there did it state I had melanoma just Atypia.  She said they were going to send the report back to the plastic surgeon that I saw on Thurday.  She said you may not have to have anything done.  I said well since he did a shave he left me with a hole in my skin which I would like to have corrected.  They told me that it would fill in but I don't think so.  We are going on 5 weeks and it hasn't yet. So now I'm waiting on the plastic surgeons office to call me tomorrow to let me know what they think.  My question is if he goes back in to fix this hole and pull the skin together so I have a line that would look much better couldn't he test a little bit of tissue again to make sure it comes back ok?  Has anyone every experienced this?  I'm just so confused and stressed out and don't know what to do.  I don't want to be left with a bigger scar if its not necessary.  Any replies would be greatly appreciated.  Thanks! 

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Lavge's picture
Replies 15
Last reply 5/3/2011 - 7:10pm

Does anyone know how quickly a melanoma can evolve after a mole has become itchy and sore?

The reason I'm asking is that about 2 months ago a mole on my back started itching. I saw my doctor about a month ago but still has to wait 3 more weeks before I can see the dermatologist. I've now noticed that it's changing rather quickly. I don't know how long it has been changing for as being on my back I haven't wantched it much before it started itching.

I'm now really worried. I have loads of moles and some clearly growing. i have no family history, but is fair skinned, burns rather than tans and was repeatedly burned as a kid.

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dawn dion's picture
Replies 12
Last reply 5/3/2011 - 7:01pm

So after a very loooong day at Moffitt ( I know I don't have to tell anyone how that goes)  and a day and a half of just flat out to busy to think, I finally have time to sit down and post about my scans on Thursday.   I had my first set of scans since starting the GSK BRAF/MEK trial -  while I am not NED yet :(  there was a 20+% shrinkage :) !   I WILL TAKE IT!   It made me very happy.    Thank you to all of you who posted your thoughts about my scanxiety, said prayers and gave me a patron saint to pray to (Mike :) ) - It helped me tremendously - especially when I was  sitting and waiting for her to come in and discuss the results.  Felt like I was two seconds from a massive heart attack - and she wonders why I have days when I need a anxiety pill.  Just wanted to share the news and again Thanks to everyone. 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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