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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Becky C.'s picture
Replies 6
Last reply 8/7/2011 - 4:01pm
Replies by: jimjoeb, Tim--MRF, Anonymous, MariaH, akls, washoegal

Hi, I would appreciate some other people's opinions about this. After having my SLNB, I had microscopic cells in the node, other node that was removed was clear. Both my oncologist and plasitic suregeon recommended removing more nodes. From some of the research I have done, some surgeons may recommend not going forward with the LND. I am afraid of lymphadema, but I also know there is no test to detect microscopic cells. I would appreciate feedback form anyone having a simolar situation as mine. Thanks

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AZ_Gal's picture
Replies 14
Last reply 8/6/2011 - 7:55pm

Ok so I'm exactly one week away from my SNB and WLE and totally freaking out. Only had surgery once before and it was horrible. they told me i'd wake up with my husband next to me and i woke up sooner than planned he was there, the tube was still in my mouth, which meant i couldn't ask for him. and i was freaking out not knowing why i couldn't talk.

This time i have 3 beautiful children waiting for me at home. Thankfully my husband was able to get his FMLA put through so he could go the to surgery with me, and my mom will stay with my kiddos. but I'm still freaking out. it is all i can seem to think about. the what if crap is getting old. what if they find something? what if there is a complication? what if.... what if.... what if.... ugh!!!!

 

Any ideas on how i can get over the freaked out part of all of this?

 

Thanks guys!

 

Kim from Arizona

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mombase's picture
Replies 10
Last reply 8/6/2011 - 2:01pm

This is just a general question, and this might be a figment of my imagine:

Are there lots and lots of folks who have been diagnosed as Stage IV that were declared free of disease years prior? For example, I had a lesion on my back that was fairly deep (can't remember the actual Breslow rating), it was removed and sentinel galns under both armpits were negative for disease.  I was told "congratulations", sent on my way, and no further treatment was advised. Three years later, melanoma brain tumor and lung tumors.

I know "the beast" is sneaky and resistant, but isn't there anything that dermatologists, nutritionists, etc. could advise to maybe alert a person that a certain lifestyle change might aid in helping the body fight off future melanoma?

I am thinking that there are a LOT of folks who are in the same boat. Not that the disease might always be avoided, but that we might have a better chance. I know this is not a medical judjment,  just a personal one!

Cristy, Stage IV

Getter done!

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EricNJill's picture
Replies 4
Last reply 8/6/2011 - 1:53pm

These last two days have been unbelievably painful for me.  I miss him so terribly.  I am glad that he is at peace and rejoicing in heaven.  Now my battle begins...living on without him. 

Thank you all for your prayers and support during our journey.

http://www.legacy.com/obituaries/dayton/obituary.aspx?n=eric-jerome-sizemore&pid=152880705#.TjwMep5G82E.facebook

Because I was asked, here is a link to the Paypal Fund set up for our family.

https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=IZ0He2TpNwyduRqOljgzD5oNqwvN9MgSv7B-Omm-nod2fJ-_O4iSxlrs6fO&dispatch=5885d80a13c0db1f8e263663d3faee8d1e83f46a36995b3856cef1e18897ad75

EricNJill in OH

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Phil S's picture
Replies 8
Last reply 8/5/2011 - 9:13pm

While, the month of July proved to be challenging, when Phil's "routine" Pet/Cat and MRI scans at Dana Farber showed a lung nodule that turned out to be melanoma.  Just a quick recap, Phil's case is somewhat unique (mucosal, rectum) melanoma, and he had initial surgery in Feb 2010, then one year of interferon.  He did great on interferon, and we really felt it kept his aggressive melanoma (mucosal, deep primary, very high mitotic rate) at bay for the eighteen months he stayed at stage 3.  Others can disagree, and we will never know for sure, but two months after completing his year of interferon, the lung tumor was found.  Since, he was clean on all scans except for that one lung nodule, he had his right middle lobe removed on July 14th, and they got all the tumor and clean margins, no lymph node involvement. 

Phil is also Braf,C-kit, and HLA 02 negative, so future options are limited.  Stage IV NED, also limits clinical trial involvement, but we aren't complaining, thankful that surgery was an option.  We pushed for Leukine, and he is starting on Monday, praying that this drug can keep him stable for awhile.  We frequent this bulletin daily and get wonderful information and hope from all the people who share their experiences on this Board, especially Jerry (another stage IV mucosal melanoma case) who battles on, despite last year's fight with a horse.  Jerry is a true inspiration to us. 

We grieve with all those who have lost love ones to this disease.  We understand how everyone can and does feel sad, angry, scared, frustrated, disappointed, and hopeless when melanoma once again takes a front seat in their lives.  We truly emphasize with all the familes with young children (our kids are six and eight years old) and how fighting melanoma takes away part of their childhood, or at least part of the summer.  But, one thing I have learned in the past 18 months, is that people are resilient even children, and on a personal note, our kids are doing really well.  Phil is plugging along, lung surgery was fairly easy for him, and he is ready for the next step, hoping leukine boosts his immune system.  And, I have rallied too, after some dark moments especially at night, to again help my husband begin another battle with the beast.  Take Care!  Valerie (Phil's wife)

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EricNJill's picture
Replies 57
Last reply 8/5/2011 - 5:31pm

I'm sorry I haven't been on here so much.  I just wanted to let you know that Eric is still here with us.  He is such a fighter.  He is less alert and his organs are slowing down but when he's awake he is able to talk to us.  I took some pictures of his leg last night.  They are very graphic and hard to look at.  His doctor said that the cancer is causing the tissue to rot. 

Thank you all for your prayers.  JillNEric

Video of pictures:  http://youtu.be/WhROjs27CDg

This is a blog post about the man I feel in love with:  http://www.melanomasucks.blogspot.com/

 

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fgilbert63's picture
Replies 1
Last reply 8/5/2011 - 5:30pm
Replies by: MichaelFL

Just wondering if anyone has heard of this or used naltrexone.

http://www.lowdosenaltrexone.org/index.htm 

Frank

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mombase's picture
Replies 2
Last reply 8/5/2011 - 4:32pm
Replies by: mombase, lhaley

I had my consultation with the Chief Radiation Oncologist yesterday at David Grant, who was very up front with me. He said since melanoma cells by their nature are resistant to light, he would need to do a much higher daily dose to be effective than if the tumor had been a primary brain tumor. Along with my sister, I made the decision to forego the WBRT for now and start with Yervoy as soon as possible. That way the Yervoy can act against any melanoma cells that might be hanging around in my brain, as well as start working on my lung mets. The rad onc said that he would be happy to go with WBRT in the future, or SRS, if  I need it.

I thought about this long and hard overningt and woke with a sense of relief. Not looking back!!

Cristy, Stage IV

Getter done!

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carol b's picture
Replies 2
Last reply 8/5/2011 - 3:22pm
Replies by: lhaley, Fen

ok here it goes.. i know im a little late but my arm is still super sore.. i can use my arm from elbow down but thats it, one surgeon said they clipped a nerve and one said they didn't. we thought there was only one tumor but when the got in there it was 3 and they had fingers wrapper around everything, They cut out some of the muscle. They couldn't get it all but they did get most of it so we are hoping some more rounds of IL2 will get rid of whats left . i go monday to take out the drain tube hopefully. It hurts all the time. fluid id still pouring out of it so they may leave it in longer. I sure don't want lymph edema. they took off a tumor growing off of the outside of the skin and sent it off for a  biopsy. I get that report Monday too along with a PET scan. I pray the IL2 has worked on the other small tumors and they are gone. they will set up my next rounf of IL2 while i am there. Im starting to really dread those treatments. The last one was so scary cause my blood pressure dropped to 40/20 and had to bring in the crash cart but they give me a shot of something to bring up my blood pressure and it started working before they figured out how to work the crash cart... I Thank God for that... But it was so scary for my husband  and i was on the phone with my daughter when it happeren so she was freaking out too... But as for the surgery it went really well. no stitches except for the drain tube got sewed in so i wouldn't pull it out.. The incision was only about 3 inches long and the just glued it ant put stirrie strips on it but the hole is really deep, its not gonna look very good for a long time.. Trauma from the surgery hit about the second day, OMG was that awful , every muscle from my chest up was so sore, so if anyone has this surgery expect it.. the Dr says they to stretch you and move you head and neck in ways that they stretch all the muscles and it makes you very sore.. i was on morphine every 2 hours except for when i was sleeping so that helped alot. But even after 7 days im still  really sore,, Could be from clipping the nerve cause i cant raise my shoulder still..Anyway thats my story from my surgery,,Its the best i could do with drugs im on,, Now im on to step 3 now, i got to beat this, i cant stand much more. I dont want to give up . but voices in my head are starting to tell me quality is better than quanity... i love all you guys on here and pray for you all the time..I sure wish they would hurry up and find a cure for us...God Bless you all.

 

carol b

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Hi, I would appreciate some other people's opinions about this. After having my SLNB, I had microscopic cells in the node, other node that was removed was clear. Both my oncologist and plasitic suregeon recommended removing more nodes. From some of the research I have done, some surgeons may recommend not going forward with the LND. I am afraid of lymphadema, but I also know there is no test to detect microscopic cells. I would appreciate feedback form anyone having a simolar situation as mine. Thanks

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Jydnew's picture
Replies 9
Last reply 8/5/2011 - 1:48pm

Hi,

I am so saddened by the recent posts on the board, and hope that my post can give a seed of hope to others who are facing their melanoma diagnoses. 

My husband had his last CT scan today at 1:00 and we got the results by 3:00 - No Evidence of Disease.  Thank you to the nurses, staff and doctors at the St. Luke's Hospital Cancer Center and the Imaging Center in Bethlehem for always going above and beyond for us.  For any of you in the Lehigh Valley, PA, or surrounding areas, I absolutely recommend this hospital.

Anyway, I just wanted to post the specifics of my husband's cancer and follow-up so that if someone is searching for a long-term survivor, they will find this post.  He was diagnosed Stage IIIA at age 26 back in January 2002, just a week after we returned from our honeymoon.  His lesion was 1.3 mm, Clarks level IV, not ulcerated - mitotic rate was not given back then...  It was on the tricep area of his right arm.  After the initial surgery to remove the mole, he had a wide excision and sentinel node biopsy.  Microscopic melanoma was found in 2 nodes - one had less than 2 mm deposit and the other had "not more than 10 loosely scattered cells."  Both were subcapsular.  He had a complete lymph node removal, no other interventions.  He had CT scans every 3 months for 2 years, every 6 months for 3 more years, and then every year since then.  He has bloodwork drawn every 6 months, visits his oncologist every 6 months and visits his dermatologist every 6 months.  He eats what he wants, but we rarely eat processed foods (not as a result of the cancer diagnosis, we just always have), he drinks lots of beer, he exercises regularly, and he gets a good nights' sleep.

Since 2002, he has earned a teaching certificate, a masters in education and has 5 years of teaching middle school under his belt.  We have traveled the country, have moved 5 times, bought a house, got 2 dogs, and have had 2 children, one who died before birth and one who was born prematurely at 28 weeks and is thriving at age 2.  There have been lots of ups and downs, but most importantly, there has been lots of living.

My best to you all in your journeys,

Wendy

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DeniseK's picture
Replies 4
Last reply 8/5/2011 - 1:44pm

Hi all!!  I had a horrible night last night with pain in my neck, collarbone area, and shoulder.  You know the area right where you neck meets your shoulder.  Anyway, I was real close to  packing up and going to the ER.  I put some ice on it and it helped and took some pain relievers.  I woke up with what appeared to be a bruise in this area and tenderness but the deep pain was gone.  I think it may have been a muscle spasm but I've had this pain for a long time.  I've told my surgeon and Dr. Weber in San Fran but no one thinks it's related to the Melanoma due to the scans coming back clear. 

I go next week to the onco so I will definately tell him about the pain.

The pain is on the same side that my tumor was about 6 inches above.  I honestly don't think it's a coincidence.  What kind of scan is better than a PET?  Or is that the best? 

Has anyone else had this kind of pain/spasm in the area of their excision? 

Thanks everyone!!  Denise

 

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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NYKaren's picture
Replies 4
Last reply 8/5/2011 - 11:06am

Hi,

Last night I woke up with a 101.4 fever.  Shivering, the whole bit.  My normal temp is 97.8 - 98.  I called Dr. Wolchuk's office today and the nurse said to call if it gets that high again and I'd talk with the fellow (I think Wolchuk's out of town??) about what to do...don't even take tylenol until I call.  Also, my whole body aches.

Ayone experience this?

 

Many thanks,

karen

Don't Stop Believing

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manu000's picture
Replies 1
Last reply 8/5/2011 - 10:55am
Replies by: lhaley

Hello guys,

Yesterday my girlfriend made ​​a new resonance in the head, is very concerned, now should give you the results.
Tuesday (the day of the resonance) had some degree of fever, but the evening passed quickly.
However, begins to be very tired at any time of day, are the effects of fotemustine or the ipilumumab? or both?

The good news though is that three lymph nodes were visibly reduced almost disappeared.

 

ps.
thanks for the support you give me

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Anonymous's picture
Replies 2
Last reply 8/5/2011 - 9:35am
Replies by: mom3girlsFL, nickmac56

Question for folks with experience with clinical trials.  What affect does the existence of pre-existing health conditions have on your chances of being selected for inclusion in a clinical trial?  Random list:  Seizure disorder/epilepsy (monthly AEDs), pernicious anemia (an auto-immune disorder treated with monthly B12 injections), severe allergies, hypothyroidism, rheumatoid arthritis (also an auto-immune disorder), sub-clinical asthma

Color me just curious.  I currently have some of the items on that list, and it has been suggested I may have some of the others.  I'm very curious what affect these pre-existing existing conditions could have on any clinical trial I may want to be on in the future.   Yes, I realize a lot depends on both on how the clinical trial is designed and the type of drug being tested.  However, I'm looking for general experiences people have had to date.

I would be so disappointed to be prevented from being part of one because of a pre-existing condition.  And not just because of the lost treatment option.  This may sound corny, but I really, truly believe, deep in my heart of hearts, it is my Christian duty participate in any clinical trial I can.  I was so very disappointed when my oncologist told me there were no clinical trials available in our state for which I fit the criteria.  If I ever get a recurrence, I'll be transferring my care to one of the major melanoma centers, and I will be looking not just for treatment trials, but also for the trials that collect information, such as DNA, etc.  I really believe the only way we're ever going to beat this horrible, malicious disease is if everyone who can, does.  And when I'm gone, if they want my body or any portion of it for medical research, they're welcome to it.  (Yes, when the time comes, that will be a discussion I'll have with my medical team.)

Stage IIIb, 2 years NED

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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