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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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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Randy437's picture
Replies 5
Last reply 8/15/2012 - 10:56pm
Replies by: Anonymous, Randy437, jag, Nell

The news was all good on Monday.  NED in both brain and body.  My CTs will now be every 4 months instead of 3 months.  Brain MRI remain a 6 months.  I do not have the BRAF mutation, but qualify for Yervoy if I have another met (I've had one surgically removed from each lung, brain and small intestine).  Also, Siteman Cancer Center in St. Louis is participating in a trial of a drug for those without the BRAF mutation).  Of course I'm thrilled to be NED, but it's helpful to know there are options.  Those of you who have been there know this - but having the interval between scans lengthened is like a snow day in grade school.  Blessings to all who fight this beast and may your news be hopeful as well.

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Charla's picture
Replies 2
Last reply 8/15/2012 - 10:28pm
Replies by: awillett1991, Erinmay22

My mother (90) has been on Zelboraf for 8 months with great results.  The only problem we are having now is severe joint pain in the leg with the melanoma.  This is keeping her from moving around and staying active.  We have been trying to handle the pain with over the counters but will be starting narcotics today.  Any other suggestions and has this pain come and go for anyone on Zelboraf?

Thanks.

-Charla

   

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My mother (90) has been on Zelboraf for 8 months with great results.  The only problem we are having now is severe joint pain in the leg with the melanoma.  This is keeping her from moving around and staying active.  We have been trying to handle the pain with over the counters but will be starting narcotics today.  Any other suggestions and has this pain come and go for anyone on Zelboraf?

Thanks.

-Charla

   

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Angela C's picture
Replies 1
Last reply 8/15/2012 - 9:16pm
Replies by: melissa ann

Hi everyone.

Yesterday I got the results of my scans four months out from IL-12 TIL at NIH. Scans have been stable the last three months. This time there was a small amount of growth, about .7cm. They said they have seen tumors grow one month and shrink the next, so they haven't written this treatment off as a failure for me yet.

However, they want me to start doing my research into the possible next step, should September's scans still show growth. I am BRAF negative and have pretty much done every treatment that is available. They suggested looking into a MEK inhibitor trial, but for someone without the BRAF mutation. We are told that there are some places doing this. I'm not familiar at all with MEK. Does anyone have any experience or insight into this treatment for someone without the BRAF mutation?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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marysan's picture
Replies 9
Last reply 8/19/2012 - 11:40am

Has anyone done whole leg perfusion?  Can anyone recommend a teaching facility in the NE that has had success with this?  My husband has Stage 3C melanoma, started with the 4th toe with two recurrences over the past year on the lower leg.  Thanks for any information.

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I was diagnosed on 7-12-12

Had WLE and SNB on 8-1-12 at Emory, just got path report today which is SO confusing.

Clinical stage is IIA, T3, N0

However due to the 2nd node shows scattered subcapsular immunopositive cells and immunistains for S100 are negative there was a comment attached that stated "Multiple recuts and melan-A immunostains do not resolve the issue of whether the immunopositve cells in part B represent metastic melanoma or nevus, metastatic tumor cannot be excluded.

2 pathologists came to the same assessment

This additional information made my surgeon restage my cancer to stage III and has scheduled PET and complete lymph node removal of the groin (20 nodes) on August 29.

Only 2 nodes were removed at SNB.

Margins of WLE are clear and although we thought we had GOOD news with the stage IIA, after she changed it to III we became extremely distraught.

Any info you can give would be appreciated!

God still performs Miracles,

Gayla

Never give up- God is my healer

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GaylaB's picture
Replies 19
Last reply 8/25/2012 - 9:02am

I was diagnosed on 7-12-12

Had WLE and SNB on 8-1-12 at Emory, just got path report today which is SO confusing.

Clinical stage is IIA, T3, N0

However due to the 2nd node shows scattered subcapsular immunopositive cells and immunistains for S100 are negative there was a comment attached that stated "Multiple recuts and melan-A immunostains do not resolve the issue of whether the immunopositve cells in part B represent metastic melanoma or nevus, metastatic tumor cannot be excluded.

2 pathologists came to the same assessment

This additional information made my surgeon restage my cancer to stage III and has scheduled PET and complete lymph node removal of the groin (20 nodes) on August 29.

Only 2 nodes were removed at SNB.

Margins of WLE are clear and although we thought we had GOOD news with the stage IIA, after she changed it to III we became extremely distraught.

Any info you can give would be appreciated!

God still performs Miracles,

Gayla

Never give up- God is my healer

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Roxy1453's picture
Replies 5
Last reply 8/15/2012 - 9:39am
Replies by: Janner, Roxy1453, Anonymous

I had the last 3 months off! No appointments, no problems! I went in today for another scan.

I have no new spots!! But, the spot I have had behind my knee is still there. It has gotten a little smaller, but not enough. We talked, In the past, about surgery to remove it but it could cause me to have drop foot. Today we are back talking about surgery. Dr. Is going to talk to surgeon to see if it is still risky. I won't know until Thurs.

He did talk about the anti pd1 being available in the next 3 or 4 months. He also said I could just wait 8 weeks and have another scan to see if it changes.

Any good ideas for me?

Thanks,

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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Gene_S's picture
Replies 2
Last reply 8/15/2012 - 10:59pm
Replies by: Anonymous
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