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 9
Last reply 8/21/2012 - 2:39pm
Replies by: kristine, Anonymous, Harry in Fair Oaks, Jeff's Mom

I am at a crossroads and looking for advice, so please feel free to chime in. I am about 1.5 yrs NED but didn't have the typical diagnosis. I had a small bump removed which pathology suggested was metatstatic melanoma. I had seen 3 oncologists in Chicago area....Dr. Marilyn Evrard, Dr. Howard Kaufman and Dr. Jon Richards. All had/have varying opinions. Dr. Evrard not being a melanoma specialist suggested seeing Dr. Clark at Loyola, Dr. Gajewski at U of C or the two aforementioned doctors as they are the regional experts.Dr. Evrard had the scans performed(no mets anywhere) concurred with doctors and said I potentially have a good prognosisbased on her dealings with melanoma but I'd be better served by seeing an expert. Based on nisurance I saw Richards with a second opinion from Kaufman. Since there is no primary leison I'm lumped into a unique group of unknow primary. Now for the adivce from you, the valiant warriors out there. Not to create prejuidice against either doctor I will only say that one feels I'm stage 4 with uknown primary and require extensive scanning (3 months CT of Chest down to Pelvis & semi annual brain MRI). Risk of recurrence is low/medium.

 

The other feels that there possibly was no primary or my body had immune reaction to destroy it and I'm low risk for recurrence and require semi annual scan of chest & neck. Let me mention that both had my original path slides reviewd and both were suggestive of metastatic disease but didn't say metastatic. Dermal melanoma has been thrown around and I have researched it and it seems a possibility but again nothing is concrete and as I have realized anything is possible with this ugly disease...just doesn't seem fair. I don't post much here but I do follow and check to see how people are doing. I figured with all the good advice and support I see on here, someone can help me with making a choice in regards to which doctor's follow up plan do I go with. I'm scared, confused and lost. I just want to stay on top of this but not subject myself to scans etc that may be harmful in future.

 

Finally anyone familiar with hematocrit on blood test? Mine has been low on last 2 tests but not bad....not bad enough for doctors to be concerned. Anyone have any ideas on that?

 

Stay the course and fight the fight. You're some of the bravest people out there!!! God bless!!!

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 3
Last reply 9/9/2012 - 10:04am
Replies by: parkmk80, Janner, Anonymous

Hello:

In the last year I have had two excisions on two moles that were "above" moderate in changing (mild, moderate, melanoma). Were these going to change into melanoma or are they removed for precautionary reasons?My doc said that they may never change or they can change tomorrow.  Because I have had two like this, how high are my chances in getting melanoma? I have close to fifty moles and freckles, 15 dysplastic nevi. I have already taken of 13 and two need further excision. I'm trying to learn more about this. THank you for you time.

 

Rob

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/4/2014 - 5:35pm

My husband was diagnosed 2 years ago with stage 4 melanoma.  The tumor was in his lymph node under his right arm.  The PET scan only showed the cancer there. They've not been able to find where it started. After several months of intense radiation and chemo combined, they said there was nothing they more they could do. The tumor was too big for surgery.

He won't go back to the oncologist because he already was told there was nothing they could do. Surely there is a melanoma specialist in the State of Alabama who could find a treatment to help.  He can feel it growing and spreading.

Anybody have any suggestions?

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bikerwife's picture
Replies 2
Last reply 8/17/2012 - 7:21pm
Replies by: gabsound, Fen

Monday was an awful day. Went in at 715 for a 4 hour procedure for 2 mets turned into a 9 hour procedure for 6 mets. Dr said they got them and they were barley visible. Still I'm thinking its spreading everywhere mon was rough by tuesday we both were emotionally exhausted.

Wed morning we go in for kidney scan and chest cavity scan. We walk in dr office and dr high 5s Lynn. I'm still wondering so he shows me the scan from 3 months ago it was 9.8 cent and its glowing then he shows me new one it not glowingi say and dr says that's cause its gone. What's in chest cavity is almost gone also we shared lots of tears and hugs with our dr. This drug is awesome.

Gamma knife can be used again and they will continue to monitor brain closely but for know we smile. Lynn says he's slowly crawling back. He says keep fighting keep praying and keep beleiving.

Lots of love
Lynn husband to bikerwife

What God leads u to he will. Lead you through

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Replies by: audgator, LynnLuc, Theresa123, Anonymous, Tim--MRF, Linny

My oncologist told me to "look up" anti PD 1.  I was wondering if someone could explain it to me so I could understand it.   Like to a 2 year old or something;)   I need the information to make a decision about my care.

 

Thanks,

Terri

Stage 4

Every day is a miracle.

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MattF's picture
Replies 27
Last reply 8/28/2012 - 7:59pm
Replies by: MattF, Snickers60, Minnesota, LynnLuc, Erinmay22, Janner, Anonymous

I'm a 42 yo white male and I was diagnosed 13 August with a call from my dermatologist. I had a mole on my cheek forever but it started growing and even bleeding within the last 3 years, so I finally went to the doctor.

I have been going to other doctors, PCP and Neurologist for headaches and vision changes for the last 12 months. These have been guessed at as Cluster Migrains. Now with pathology report diagnosis I'm uncertain. 

Malignent Melanoma Tumor - Thickness unknown but over 1mm, Ulceration unknown, Mitotic Index 5/mm2, Clarks level IV-V, loosely Pathological staged as T2b

My dermatologist didn't think it was Melanoma so he did a shave biopsy rather than a punch. For this reason the pathologist couldn't get an accurate thickness, among other important pieces of information.

Now I'm just waiting on Surgical Oncology to call to make initial appointment.

My question is beyond brain tumor is it possible my melanoma has pread under my skin in a horizontal fashion creating headaches and sensitivity to touch?

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CarolA's picture
Replies 2
Last reply 8/17/2012 - 9:54am
Replies by: christie

I can only think of Bonnie Lea who goes to Princess Margaret hospital, I believe.

But I know there are other warriors who might be able to direct Christie in the

right direction to find some alternative care for her husband.   I am sorry that my

mind does not recollect specifics of where to go in Canada, what IS where, in which

province, nor can I remember a specific name of someone on the board.

Hope this spurs something.     We are on the Canadian border and I do know that

Canadians come to Roswell Park Cancer Institute in Buffalo----but at what expen$e,

I am not certain.

CarolA

CarolA

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ed kv's picture
Replies 2
Last reply 8/18/2012 - 8:51am
Replies by: Cate

My wife was diagnosed today with stage 4B melanoma.  Primary location in mid back but heavy in right armpit lymph and several spots in R lung.

We live in Michigan but are moving to Houston next week so we can go to MD Anderson.  I'm hoping there are trials there that might give us a chance.  So many details to work through with the move AND the medical stuff!!!! 

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ed kv's picture
Replies 5
Last reply 8/22/2012 - 1:13am

My wife was diagnosed today with stage 4B melanoma.  Primary location in mid back but heavy in right armpit lymph and several spots in R lung.

We live in Michigan but are moving to Houston next week so we can go to MD Anderson.  I'm hoping there are trials there that might give us a chance.  So many details to work through with the move AND the medical stuff!!!! 

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christie's picture
Replies 7
Last reply 8/19/2012 - 12:25pm
Replies by: ValJaneMB, christie, bcl, BonnieLea, Anonymous

Does anyone have any suggestions on what I can ask or suggest to our doctors?  My husband was diagnosed with Stage 3 Melamona in 2010.  He did the year of Interferon and completed it November last year.  He had been doing very well until recently.  He was having problems so we went to the doctors and a ct was done.  He has a 3 cm mass in the front part of his brain.  They have put him on steroids but to me, it doesn't seem like they are helping (he is in the hospital).  He was scheduled for the Gamma Knife but we found out yesterday there is a tumor in his spine.  They have now told us that the Gamma Knife won't happen and are just going to make him comfortable.  They are doing radiation on his spine but that is it. 

Is there something that might help him?  We are in Manitoba, Canada.  No Melanoma center, just an Oncogist in Winnipeg that lets the Cancer Center where we live know what to do.  I feel helpless.

Thanks

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lrkg1234's picture
Replies 1
Last reply 8/16/2012 - 10:53pm
Replies by: washoegal

I'm so happy that Scott finally got a doctor's appointment.  I called quite a bit and nagged, but it's done now!  At least we can get the information that he needs in order to make a decision on how he wants to approach the treatment. 

First we are going to Dana Farber and then we are driving the next day to Johns Hopkins. It's such a relief. 

Thanks to all that responded to my frustrated post.  It was good to know I was not the only one dealing with setbacks and constant delays.  Horrible that it has to be that way.  Experiencing a crisis while being patient does not really work.

I didn't know it was going to be this hard/slow to get answers.  It's a long road ahead, but it least we are moving forward.  Hopefully we can sleep tonight.

Lisa

 

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himynameiskevin's picture
Replies 23
Last reply 8/23/2012 - 3:58pm

It's been a ride.

I know Brenda updated my status for me as I was down and out, and kind of remember her reading your replies from my bedside in the hospital room. Thank you all for staying by my side during the must unfortunate and of difficult times.

A quick recap: MRI on July 23rd and "detailed" MRI on Aug 3rd showed more tumors in my brain. 3? 12? I didn't want to know, I was told that they were 1cm or lower and WBR would be the next best thing as have already SRSed 10 in February, it didn't seem like a race to win.

PETscan on the 6th showed more progression and less progression in certain parts of lungs, but the bad outweighed the good. Affirming Zelboraf has run it's course, for now. Also a node, in my right groin is swelling again, same one, same spot as in February. Other than all those. That's it.

For a week or so before the second MRI I hadn't had much of an appetite and had a bit of anxiety, losing  weight, and not feeling too hot. Dizziness and fatigue. On the 6th, the day of the PETscan, things got rough, no appetite, started throwing up everything that went past my throat and real bad headaches. Around 3am of Tues I went to the ER, vitals ok, since I had just got scans, they stabilized me, they got me on steroids for swelling, a prescription sleep aide and some and nausea stuff.

12 hours later, after no help from these meds, Brenda called my docs, and they told me to come in right away to be admitted. By this time, I couldn't walk at all, complete vertigo. I've never had a drink or been intoxicated in my life, but it was probably like that. Slow steps with Brenda's shoulders and crawling to her car. And that was that, on our way I was a little scared but happy nonetheless. Looking forward to being under professional care. A lot of care was put toward me. Checked in, nurses and everyone were so great. My room was real nice and cozy. My mom flew out from NC, and took care of me like only a mother can. Stayed in my room and made my time there tolerable, and helped me get a little better day by day. She has to go home in a few hours though. :/ At least she was able to see me mend.

When I went in I was 122lbs, low for my usual 129 10yr avg. I was on stretchers and hover mats for days. I only threw up twice, once right when I arrived, and once on the first trip to WBR. I blame anxiety. They started WBR a week ago today, will continue everyday, until the end of next week I think. By Friday of last week I was wheel chairing it. And Saturday, a few walks outside with a walker. By Sunday they had me off all IV's/fluids. Labs are stable and I was able to walk, kind of like new born Bambi. But now, Wednesday, not too bad, calves still a little weak and crampy, so I take it slow, but hopefully be back to normal sooner than later. The steroids definitely helping my appetite, back up to 128 and keeping everything down, no problem. Not sure how swollen my face will get this time, but I'd sure prefer a swollen face over a swollen brain.

Future plan is still the same: just see if I can obtain some stability in my brain, knock these things out the best I can. Should be starting Temodar very soon, waiting on calls/approvals today, (did a low dose for a few days in the hospital) went alright. If I can buy some time, maybe a Temodar/Zelboraf combo? If I can get off the steroid, maybe IL-2 again? If something gets approved, maybe a compassionate use trial?

We'll see. For now I'm just going to try and feel better today than yesterday and see what happens. Try to keep doing that. Because somehow I'm still here, I should savor this gift. 

Thanks for reading, I'll keep you updated best I can.
Genuine love to my Brenda, my mom, and to all of you for sticking by my side, encouraging, hoping and and sharing stories of good health during these rough times.

To our futures. -Kevin

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lrkg1234's picture
Replies 10
Last reply 8/22/2012 - 1:25am

Hello all ~Just needing a minute to vent. 

My husband, Scott was diagnosed with stage IV mucosal melanoma on the 8th of this month.  I have been trying to get a doctors appointment at a good cancer center ever since then.  I have jumped through hoops and ran in circles all this time.  I am on the phone non-stop and nothing has happened. 

First Dana Farber set us up an appointment after 3 days of waiting with the wrong department even though I know I asked for Melanoma because the receptionist needed to know how to spell mucosal.  That has slowed us down and I don't have an official appoinment yet because we are having trouble with getting them the pathology slides.  Johns Hopkins has the slides and the other set of slides was sent to the place that tests for BRAF & C-Kit.  Will they give those back to the lab when they are done? 

Johns Hopkins got his records and slides on Monday and have been reviewing them since.  I plan to call again tomorrow.  Once they are done with the slides we have to get them to Dana Farber. 

You wait and wait.  People promise they will call you within 24 hours, does not happen.  Exhausting. 

No one will see you without these slides and it really slows things down. 

I'm so worried that it will probably be full month after diagnosis before we even begin any type of treatment.  I don't want the cancer to spread any further. 

Did anyone else have these problems?  Any tips?  Does a month seem to long to wait or is this typical? 

Any advice?  Lisa (Scotts wife)

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I've done a search of the board and did not see this listed. My apologies if it's been posted before. Seems like it's a very accurate method of detecting Melanoma on the skin. Approved in Canada, soon to be Europe and 2013 for US? Not certain of the time line...I was looking at an older video clip on YouTube.

 

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Anonymous's picture
Replies 4
Last reply 8/16/2012 - 10:08am
Replies by: Oncologyreport, Charlie S, Anonymous

I've done a search of the board and did not see this listed. My apologies if it's been posted before. Seems like it's a very accurate method of detecting Melanoma on the skin. Approved in Canada, soon to be Europe and 2013 for US? Not certain of the time line...I was looking at an older video clip on YouTube.

 

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