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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shellebrownies's picture
Replies 7
Last reply 8/24/2011 - 12:31am

Well, Don went in this week for a CT scan and brain MRI after having his 4th chemo treatment. I had been concerned since after the 3rd round when his LDH numbers started creeping up instead of coming down. Unsurprisingly, the scans showed some regrowth. (They also found a small blood clot in his lung, so now we add blood thinners to the ever-expanding list of medications he takes...)

Our plan B was the Compassionate Use Zelboraf trial. So we go in yesterday for his EKG and derm appointment for the trial. While we were there, Dr. Lawrence comes in to see us. He said that they got the test results back from the tissue sample...and that Roche is saying that Don is NOT BRAF positive!

This was the SAME sample that was used in May when we were trying to get in to the GSK BRAF/MEK trial...the same one that came up BRAF positive on their test!

Now this gets complicated. The doctor said they are appealing to Roche to try and get Don accepted to the trial based on the other BRAF test. However, now that the drug has been FDA approved and the FDA requires that the drug can only be prescribed after a positive result with a FDA approved test (as in only Roche's test), I'm not sure if that's going to happen.

There has been talk about perhaps taking another tissue sample if their appeal is denied. But, what happens if that comes back negative?

Sigh. Wish I knew. We meet with Dr. Lawrence on Monday; maybe we'll have better news then.

 

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Jan in OC's picture
Replies 4
Last reply 8/21/2011 - 1:25pm

I have been at MD Anderson since 5 am...just got back to the hotel (after 8:30pm).  The surgery went good, the doc removed one tumor 10mm x 10mm from his left frontal lobe and he was pretty sleepy and in some pain (big headache). 

The Neurosurgeon also delivered some bad news that I have not been able to speak to Dirk about yet.  Last week's MRI showed just one large and 3 small mets in his brain.  Last night's pre-surgery MRI showed 8 small mets now.  I had a few tears and lots of cursing in my mind.  CRAP!   I will get the results of the post op MRI in the morning.  We will talk to Dr. Papa on Monday and decide where to go from here.

Our UCLA Oncologist (Dr. Chmielowski) called today to check on him and said that he was glad that we were at MD.  He said it was the best place for Dirk right now, so I just need to stay positive and believe that we can beat this latest set back.

To Desiree, I sent you an email with my phone number...look for a message from oldhippielady50@yahoo.com!

Thanks everyone for your prayers and support.  I am very grateful that to the wonderful people on this board.  You have kept me sane!!

Jan, wife to Dirk, stage IV

laughter is the best medicine

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Jamietk's picture
Replies 8
Last reply 8/21/2011 - 7:49pm

Just posting to give a little hope to stage I and stage II (and any stage really). This week or next, can't remember which, is my 6 year anniversary. Isn't that great that its been so long I can't remember the exact date in August? I was dx borderline stage IB/IIA (2.0 on one path, 2.1 on the other), SNB neg. I'm pretty sure I'm NED, as I had a CT scan in June due to abdominal pain (turned out to be an abcess on my ovary and a major pelvic infection, which was all removed by a Gyn Onc and no cancer found). I go to MDA in October to gain my official NED status.

Here's hoping for many more years of NED for all of us.

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Lisa13's picture
Replies 7
Last reply 8/21/2011 - 10:25pm

I'm 9 days into my ipi treatment and in the past 2 days have noticed irritablity BIGTIME!  I'm inpatient and very moody which is unlike me.  It's not all the time, but I have noticed something different about me. I know ipi can cause glandular problems which can cause irritability, but I don't think this would happen so qucikly. I don't really know if this is just me or the drug. Has anyone experienced this?

Lisa

Many impossible things have been accomplished for those who refuse to quit

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CAdesiree's picture
Replies 6
Last reply 8/19/2011 - 9:31pm

just came from meeting the new surgeon... i told him i was hoping he was going to tell me it wasn't necessary to cut it back open.  he said he couldnt do that.  the notes from the original MOHS procedure were very poor.  and Mohs isnt designed for melanoma because it does NOT achieve the margins needed.  he and his assistant even mentioned seeing "satellite" on my back (i'll be looking that up in a minute).  but he wants to also perform a sentinel lymph node biopsy.  i didnt think that could be done after the MOHS.  he says it not the most desirable timing, but it will be best at time of resection.  thanks to everyone that commented on the last post... you have all gotten me really thinking.  this new surgeon also said that my new dr wouldn't have referred me to him if she thought it was just a consult.  that i should speak with her directly, but if she sent me to him its because she has concerns as well.  so, im back at square on... trying to my head around all of this.  but i wanted to post what he said.

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emilypen's picture
Replies 5
Last reply 8/25/2011 - 4:41pm

Hi All,

My hubby is currently doing IPI in a clinical trial in Toronto. He had his 3rd infusion yesterday.

My question to anyone who responded to IPI in the past. When did you lumps/bumps start dissapearing or rather when did new ones stop popping up?

It seems that every day there is a new subcutaneous bump popping up. Some of his older bumps are inflamed and painful to the touch and some have bruises over them.

We heard that his lympocyte level was raised on his last blood work and the docs said that is a good sign, but it's hard to remain positive when he feels something new every day.

Last night he was up til 4am just worrying.

 

And for those that did not respond to IPI, what next? We've done MEK/P13k, BRAF , Dacarbazine and now IPI.

Any input is greatly appreaciated.

 

thanks,

em

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Jewel's picture
Replies 3
Last reply 8/21/2011 - 2:50pm
Replies by: Vermont_Donna, Phil S, Jewel

I have been coming to this board since Nov 2010 when my husband was first diagnosed with melanoma. Lower left calf Nodular, 3.6mm, Clark Level IV, >10 per high power field, Vertical growth present, Vascular invasion present, Microsatellites present. He had a WLE with clear margins. Oncologist chose NOT to do a LND due to the fact that he feels it does not improve OS. We chose to watch and wait because my husband likes the idea of keeping his immune system strong. Did normal protocal when in June of 2011 when he was having Hip Resurfacing performed I noticed in the hospital that he had some new spots on his original site. Fast forward to July and they discovered that he had 3 local recurrances in the original site, after a PET scan and 2 MRI one on the brain and one on his leg it is showing only in the same original spot. He also has one node that showed up on his left groin. We are now scheduled to have another WLE performed with a skin graft and a LND. Our Dr said that they prefer not to just needle the node due to fear of spill. Now I asked our ocologist about treatment, and he said he was pretty sure that my husband could be "cured" again. We all know deep down what that means. My husband and I are from the Adirondacks and my husband is comfortable with our regular oncologist and doesn't want to change. My husband is incredibly optomistic and always has been....he knows he has cancer....but refuses to let it run his life.

What should we be doing different?

Thanks to all of you, you are all so incredibly brave and strong!!!

Best wishes

Cammy& (Ken)

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Wilfred's picture
Replies 11
Last reply 8/29/2011 - 10:36am

One hundred seven days from the last positive diagnosis, 99 days from the last surgery, and now I have a new melanoma, This is the sixth melanoma on the same ear, five of them in the past 4 years. My friends all tell me that I am an unusual person,  but I don't think this is what they were refering to. How common is this? Should this be happening? Every time the pathologists say that the margins are clear. Pretty soon I won't have anything to hang my hearing aid on.

If you fight, you may lose, If you don’t fight, you will lose.

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My wife's scans last week came back with pretty bad news - she has about a dozen tumors in the epidural space along her spinal column. She was going to have the one causing pain in her tailbone area treated with Cyberknife radiation, but now the radiologists are recommending Tomo Therapy radiation. Apparently this is the latest, greatest radiation treatment there is - precision and real time targeting of multiple tumor sites (can get all 12). Supposed to be painless (of course) and minimal side effects (all I can find are references to anemia and hair loss). There is only one machine in Seattle. The alternatives are not good at all - total body radiation which has awful side effects or watch and wait for 2-3  months (until her brain calms down from the Gamma Knife brain radiation treatment she had las week) and try direct injection chemo into spinal column via a brain port (sounds lovely doesn't it). That assumes she doesn't present symptoms which force some action (likely).

Anyone done this type of radiation treatment and can speak to side effects?

thanks, Nick

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

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CAdesiree's picture
Replies 9
Last reply 8/19/2011 - 5:27pm

i had issues with my original derm who diagnosed the melanoma, then later performed the MOHS to remove it.  i had gotten a second opinion, i found a dr at a cancer center with melanoma experience.  this other dr is great!!! she listens to me, answers my questions and doesnt make me feel silly about my concerns.  she had ordered scans for peace of mind... my insurance only approved one area to be scanned out of the three she requested.  they scanned my lungs, came back clear.  insurance said there wasnt enough evidence to perform other scans. all the while this was happening she was also waiting for approval from my insurance to resect the area of my initial tumor.  when the scans came back clear i just kinda assumed my insurance wasn't going to allow a resection either since it had been a couple months.  but as i was entering chuck e cheese to celebrate my son's 5th birthday i got a call from the surgeon to schedule consultation.  i asked them to email me info and explained where i was.

since my scan came back clear and i had just assumed insurance was going to veto resection i had given up on the idea and made my peace with it.  then *BAM* phone call.  i dont know what to do now... tried to run it by my hubby, but he wants me to do it to make sure they got it all.  he has had a hard time listening to anything about melanoma since my diagnosis.  so it wasnt hard to believe he didnt remember my fears about how sneaky melanoma is...

honestly, even if i go in for resection, isnt it possible it could come back? and would resection possibly increase those chances? i mean, my body would be focused on re-healing that area, would it lower my immune abilities? i feel whiney even being so concerned... so many of you have been fighting so much longer or harder than ive had to... but here i am rambling like a baby... the original biopsy said the tumor was .72mm with mitosis of 2.  i had MOHS to remove it.  and the original derm thinks he got it all.  am i being paranoid because of conflicting personalities with first dr?

i made the appt for tomorrow with the new surgeon, for consultation.  i am hoping to discuss these concerns with him.  but i was also helping for some guidance from someone else with experience. 

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sandywebb's picture
Replies 3
Last reply 8/19/2011 - 1:23am
Replies by: Cynthia C, BethA, Janner

Hi, It's been a little while since I've been on here. Just got my 5 yr. scans back and I'm still NED!!!!  WoooHooo!!!!  Was stage 3B when I got to know this beast, but I'm kicking it's butt!!! 

My question is to anyone that has leg lymphedema....I've been having a huge problem with my heel on the side that my lymphedema is on. I have a doc appt. tomorrow to get it checked out but I'm just wondering if anyone has gotten heel spurs because of the lymphedema? If so... How do you fix it??? It hurts so bad and last night at work I pretty much had to walk on my tip-toes to keep the pressure off of my heel.

Thanks for any information!!!

SandyWebb

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Hi, It's been a little while since I've been on here. Just got my 5 yr. scans back and I'm still NED!!!!  WoooHooo!!!!  Was stage 3B when I got to know this beast, but I'm kicking it's butt!!! 

My question is to anyone that has leg lymphedema....I've been having a huge problem with my heel on the side that my lymphedema is on. I have a doc appt. tomorrow to get it checked out but I'm just wondering if anyone has gotten heel spurs because of the lymphedema? If so... How do you fix it??? It hurts so bad and last night at work I pretty much had to walk on my tip-toes to keep the pressure off of my heel.

Thanks for any information!!!

SandyWebb

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TracyLee's picture
Replies 12
Last reply 9/3/2012 - 9:58pm

Hi y'all,

Still having a tremendous response to BRAF, now in my second week (after completing ipi on 7/29). My neck node, which was looking like an egg stuck to my neck, is now almost gone!

I have a rash, which looks & feels like goose bumps, on my chest/arms/legs. Not itchy.

Has anyone else who's done ipi had the "ipi itch" present this way? Or anyone who's done BRAF?

It is not at all bothersome, and I will happily live with bumpy arms and legs and be able to function again, over the weeks leading up to starting BRAF! (5 lung drains, 2 ER runs, admitted for 2 days, sent home with oxygen ...)

I just want to encourage anyone, who is on ipi, or BRAF. There are many folks who are in such tragic situations here, and I pray for everyone who posts daily. There CAN be a good response (even if delayed).

Praying that everyone has a good day, and for those having a bad day (and we ALL have those), I pray you can find some comfort and coping.

TracyLee

Stage IV May 2011

 

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Replies by: teach, gossteach, Donna M.

I am trying to help a co-worker find an oncologist for her mother in the Indianapolis area. Her mother was orig dx a year ago with a mole on her upper back. If I remember correctly, she did have mets in the lymph nodes then but based on her age (60's) the choice was made to just monitor her. Unfortunately, she now has two small spots on her liver and potentially a lymph node in her chest. 

If anyone has a recommendation for someone around Indianapolis, I would appreciate the info. Should you want to reach me directly, my email is caratindell@comcast.net.

Thanks!

Cara

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jax2007gxp's picture
Replies 14
Last reply 8/20/2011 - 1:37am

Hello,

I was diagnosed with melanoma just over a year ago.  In spite of everything I read here and from people in this wonderful place who responded, I never did get a stage for my melanoma.  The derm did what I assume was a wide excision (which caused a non-cancer related autoimmune reponse) and that was that.  She told me the cancer was only 0.9 mm so I didn't need the sentinel node biopsy even though I asked for it.  She also told me that the tissue removed during surgery came back 100% cancer-free.  The original margins from the scoop were clear as well.  I finally returned to mostly normal life at the beginning of this year.

Well, just over a month ago I noticed a large lump in my groin area on the same leg where my melanoma had appeared on my thigh.  It showed up almost overnight.  I saw my doctor (derm) who told me not to worry and that I had injured the tendon doing some heavy hiking.  After a month, I had another doctor examine me who referred me for an ultrasound and bloodwork.  The bloodwork came back fine (whatever that means) but the ultrasound report confirmed a 5 cm lymph node with the conclusion "highly suggestive of metastatic lymphodenopathy".  I collapsed at the news.  How could this have happened?  I'm going in for an ultrasound guided biopsy tomorrow...praying it is all just a mistake.  But, I'm not really thinking the odds are good for it being something other than cancer.

Assuming the test confirms cancer...what do I do next?  The second doctor who referred me for the ultrasound and now biopsy basically shook my hand, said he was sorry, and wished me the best. Okay, but what do I do after the biopsy?  Do I go to an oncologist?  Am I likely to have to start chemotherapy?  If my blood work was clear, is that a good sign that the cancer is limited to just this lymph node?  Or maybe it isn't cancer after all?

I'm only 39...just a couple of weeks from my 40th actually.  I recently starting seeing a man who I think could finally be "the one" and now this.  Scared, angry, confused and devastated.  Any feedback, advice, or any helpful words are so greatly appreciated.  I'm not feeling a lot of support from or faith in the doctors I've seen so far, so this site may really be a God-send for me.

Thank you,

Jax

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