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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Gene_S's picture
Replies 12
Last reply 8/21/2011 - 6:21pm

Update on Gene:  The inoperable tumor on the head pushing on the spine is gone and has new cell growth on the spine, the big one in the liver is 75% shrunk,  the one in the lung is gone and all the others in the liver have greatly shrunk or totally are gone. 

Hopefully by week36 he can be NED.

Now that is some great news. 

Thank you all for your prayers we both really appreciate them.

Judy wife of Gene_S stage IV since Oct. 2010.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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I am excited for the first Music City Miles For Melanoma event which will be held Saturday October 8th at Richland Creek Greenway.

If anyone is interested in volunteering for the event, whether on the planning committee or as a day of volunteer, please e-mail me at kwest@melanoma.org

If y'all are interested in participating, please check out this event's First Giving page at http://www.firstgiving.com/melanoma/musiccitymilesformelanoma5k

 

Thanks!

Kristina

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If anyone is interested in participating as a day of volunteer for the Morristown Miles For Melanoma event, please e-mail me at kwest@melanoma.org!

The event will be held in Morristown, New Jersey on Sunday September 25th.

If you are interested in particpating in the 5K, please visit http://www.firstgiving.com/melanoma/milesformelanomanj to register!

 

Thanks!!

Kristina

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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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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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AZ_Gal's picture
Replies 6
Last reply 8/21/2011 - 2:17am
Replies by: AZ_Gal, mombase, lhaley

RecOvery is going pretty well no major complaints but the healing process kinda sucks. At 8 days post op I had to unexpectedly have my sutures removed from my WLE bc according to my local pcp (not my surgeon) I was having some sort of allergic reaction to the stitches. Since then I have been paranoid of doing something and having them reopen... Probably a long shot but I definitely don't want to go through more stitches. My SNB site is healing nicely except the steri-strips they used came off way early because how the heck do you keep your armpit hair from growing and pushing them off. Lol. I do have a ping pong ball size hard lump at the SNB site and will have my surgeon take a look on the 18th when I go in for a post op visit.

Oh did I mention that everything came back free and clear of cancer cells? Yay!!!!! I know that it could rear it's ugly head anywhere at anytime but for now it is a comfort knoing it is gone from my body and I get to be here and not be sick for a little bit longer.

Just thought I'd give y'all an update. Thank you guys for all the love and support; I REALLY APPRECIATE IT!!!!

-Kim

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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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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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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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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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Jan in OC's picture
Replies 9
Last reply 8/19/2011 - 5:41pm

Dirk decided to go ahead with the brain surgery for the biggest tumor.  It is scheduled for Friday at MD Anderson.  The doc will harvest the tumor for t-cell trial along with tissue from his side.  We hope that it will be successful and grow new t-cells. We need to do a bunch of pre-surgery stuff tomorrow.  After recovery, in a couple weeks, they will zap the smaller three (hopefully) and then start him on temodar or Bio-chemo (not sure what Dr. Papa will go with).

On a good note, we are signing a lease on a house in Katy tonight. The owner has stripped the flooring and is installing new tile and carpeting, paint and cleaning.  Hopefully it will be ready to move into Saturday or Sunday.  Then I can bring Dirk to a more comfortable place on Monday when he is released form the hospital. I was worried about bringing him back to the hotel for recovery!!

He is a little upset that I will be doing the unloading & moving on my own.  He is worried about how I will get his motorcycle off the U-haul without damage.  I'm worried about driving a big 26 foot truck!!   Just need 3 or 4 BIG guys to unload the truck!!

Gonna be a crazy weekend for me!!!   

Jan (wife to Dirk, stage 4)

laughter is the best medicine

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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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kwahlbin's picture
Replies 1
Last reply 8/19/2011 - 11:28am
Replies by: kylez

Welcome to the oldest interactive online community for melanoma patients. Once you have been touched by melanoma—either as a patient, family member or friend of a patient—you become part of a community. Over the years, tens of thousands of people have turned to the bulletin board for information, support, comfort, and friendship. Now that you have joined this network, we hope you will find this a safe place to share your hopes and fears, to ask questions and to offer suggestions to others.    Through your participation in this group you can find the tools you need to help you though your journey with melanoma, and the friends who can make your journey more bearable.

To learn how to use the bulletin board and the new features, please see the Bulletin Board FAQs

Today, the bulletin board was upgraded to a new platform. If you are looking for your posts, please see the archived bulletin board.

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Tim--MRF's picture
Replies 9
Last reply 8/19/2011 - 10:16am

The FDA approved the Plexxikon/Roche/Genentech BRAF inhibitor this morning, months before when they had to do so.  This is a great breakthrough in a number of ways:

--two drugs approved in one year after 13 years of nothing being approved

--approval of "targeted therapy", a different way of attacking melanoma than anything else that has been approved

--rapid approval by the FDA

All indications are that more drugs will be in the pipeline for approval in the next few years, so the field truly is changing.  This all has a long way yet to go, but progress is so very much better than no progress!

Tim--MRF

 

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Lisa13's picture
Replies 17
Last reply 8/19/2011 - 9:08am

Just started Yervoy a week ago and I've been reading all these articles about it and quite frankly, the numbers of responders are no better then chemo. - 10%.  I'm starting to think I should have put myself through IL-2 tortue since the numbers of long term remission responders is 6% (which isn't far off from ipi).  This is so friggin' frustrating, especially when you've got all these BRAF drugs showing an 80% response rate or a 63% less chance of dying then chemo patients.  My Dr. told me that his trial of ipi (which I'm apart of now) is showing up to 40% responses, so I don't know who to believe anymore.

At the end of the day, it's either going to work or not work and I'm not going to care less about these stupid percentages which quite frankly, I don't think anyone has the numbers right. I'm so happy for all the lucky people who are BRAF positive, but I'm starting to think that the drug companies could care less about the rest of us.  I think I'm just having a bad day.

Lisa - Stage 4

 

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

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