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 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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boot2aboot's picture
Replies 13
Last reply 5/3/2011 - 5:25pm

 

wanted to update everyone...i got my axillary lymphadenectomy on thursday...dr said my tumor was around 4cm...she said there was only the one tumor and she got good clean margins...my surgery lasted longer than expected, but i am told by others this is a good sign because it means they kept looking but didn't find any new cancer tissue?...won't have path results back on tumor until i go get my drainage tube out may 3rd...i am not too sore unless i move my arm a certain way then yow-wee! feels like i am ripping something out...

boots

don't back up, don't back down

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Carmon in NM's picture
Replies 25
Last reply 5/3/2011 - 2:53pm

My husband and I got down to Albuquerque this morning expecting to do the whole round of pre-surgical exams, tests and interviews. Instead, we got my medical and surgical oncs coming in to do the doctor version of the Good News Happy Dance!!! The brain MRI and PET/CT scans done on the 13th say,.."No evidence of metastatic disease." !!! Everything is completely clear on both the brain MRI and the full body scans...even the little oddball things they were watching are gone.

I am a complete responder to the clinical trial I did combining carboplatin, paclitaxel and temodar. The adrenal tumor has completely disappeared and the oncs agreed that the risks of a complicated and difficult surgery to remove a tiny bit of inactive tissue were not worth the possible benefits. Instead they are suggesting a round of radiation at the adrenal site to improve my recurrance odds as well as a reduced dose of profilactic whole brain radiation. My medical onc is setting up a consulation for me with an oncology radiologist to discuss this and also with a neurologist when I expressed concern about adding another layer to the brain trauma I already deal with so that I can make a completely informed choice.

But for tonight, my husband and I are CELEBRATING! Thank you all so much for prayers and words of support - what an incredible group to share the entire curve of this disease with - Carmon in NM (worn out from dancing!)

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Sherron's picture
Replies 3
Last reply 5/3/2011 - 10:11am
Replies by: Barb, Sherron

I will be walking the Melanoma Walk in memory of  myJim next Saturday, May 7th, 2011 at Bachman Lake in Dallas, Texas.  My daughter-in-law, Krissi, who has superficial spreading melanoma will be walking with me.   This is for Jim, and all of the Melanoma Warriors currently fighting their fight and all the Angels watching us.  Small contributions are welcome... it is under AIM...It might be under my name Sherron Clevenger.  I need to earn $50.00 to walk, or it maybe under Jim Clevenger...not sure about that....just sure that I am doing this!!

Take Care,

Sherron Clevenger, wife to Jim FOREVER

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jag's picture
Replies 14
Last reply 5/3/2011 - 9:03am

CT of Chest Abdomen Pelvis all Clear

MRI all clear

I feel like a little kid again getting excited by numbers going up!

Hang in there and Fight Fight Fight!

Insert Generic Inspirational Motto Here

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