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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lovingwifedeb's picture
Replies 15
Last reply 1/3/2011 - 10:06pm

I was really hoping I wouldn't have to come back here writing, exposing my feelings for all to see. But if not here then where? It's not the same in the other places I've been, the support is big here, so I'm back asking for your generous feedback for the one person in my life who is changing before my very eyes.

It has been only 6 months since melanoma has taken over our lives, to some that is a drop in the bucket. To some of you, your experience is vast, the years long and painful. I will not be able to compare my story to yours and I will not try. I write from the heart only, I am the caregiver, the wife who watches her husband slowly change from the person she married.

Father's Day - Stage 3B

July 22nd - Surgery

Choice - No treatment/Nutrition Based

5 Months - Happy New Years - New Tests - Stage 4 - Brain Cancer

No other "hot spots" in body found

 

My husband's melanoma has crossed the lymph system into the blood system into his brain, 6 short months from diagnosis... now what?

Appointment with the neurologist on Monday.

Absolutely Terrified.

 

Deb

lovingwife to Bob, stage 4

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mike_nj's picture
Replies 10
Last reply 1/4/2011 - 10:41am

Hello all

I have been checking the board frequently but rarely see anyone around to chat with lately.

Anyway, I hope that this year is the year that the researchers connect all the dots and we can start talking about either curing melanoma or downgrading it to a chronic disease, but no longer life threatening for most people.

I still work and I am involved in building a cat litter plant so my 3 cats should be happy.  My family, threw me a surprise 60 b-day party back in November.

I am due for another checkup in May as I am now 6 plus years out from my stage 3B diagnosis.  Still have Lymphedema in my right arm and some external radiation scars but in pretty good shape, other than my knees (arthritis).  I still take an assortment of supplements as well

If I had to get this cancer, I am honored to among all of you, those we lost and mourn , those fighting with active disease, those like me in a holding state, the newly daignosed, and all the caregivers and doctors and nurses that are on our side.

Happy New Year

 

Mike from NJ

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nicoli's picture
Replies 2
Last reply 1/2/2011 - 10:01am
Replies by: Rocklove, JuleFL

Dear Melanoma (NOT!),

Well, 2010 has come and gone and only partially because of you, mel, it was without a doubt the worst year of my life. We had quite a fight. You did your best, even returning after I thought I had kicked your a**.  

But.....I'M STILL HERE!  And I expect to be here this same time next year, thanks to my God, my good doctors, and my treatment plan.

But will you still be here next year, mel?  Maybe not, maybe they will find a cure in 2011. Maybe 2011 is your final year, mel. Maybe. You BETTER be scared, mel, cuz nobody likes you mel, nobody is praying for you, nobody is working and fighting to find a way to keep YOU alive.

Maybe you better run home crying to your mama, mel, maybe you better go home and get your affairs in order, mel !

So here we go again, just you and me, mel. Ready?  CUZ I AM. Round One of 2011: Biochemo starts next Thursday. Let's see how you like it, mel.  I know I'm gonna LOVE it. Can't wait! Let's go.

Most sincerely,

Nicki, stage 3b

 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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JewelryCrafterGirl's picture
Replies 31
Last reply 8/9/2014 - 12:47pm

Was wondering what your recovery times were like for the wide local excision and sentinel lymph node biopsy.  Am having mine done at Lee Moffitt (Dr. Zager) in Tampa, Florida on January 13 or 14.  WLE is mid back, SNB is either under arm or neck area.  They say six weeks for total recovery, but that some people are ready to go back to work in just a couple of days.

Thanks, Happy New Year!

Pennie

embrace the positive

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KellieSue's picture
Replies 4
Last reply 1/1/2011 - 7:48am

Brain Mri: Clear, thank goodness.

Ct Scan: definite shrinkage in neck and also stable disease. Lungs: about 4 nodules in each lung after 8 weeks of ALT. Darn!!!!!

So ALT worked on the neck and theres nothing else in the body or brain, just the lungs now. So 8 more weeks of ALT at a higher dose, Dr. Mo believes the trial people will okay it. I was the 1st person to do a 2nd 8 week treatment and I have shown progress in the past. I know this treatment and think I can handle it again.

Or high dose IL-2. He said we try it for a week, if I don't want to die then we do one more week. If I can't  handle it or it doesn't do any good it won't exclude me from doing ALT. Or we look at B-raf? Trial should be opening up in the next few weeks here he said.

 Really wasn't expecting these pesky lung nodules to be there. I was just hoping for stable disease. darn, darn, darn!!!!!!

Kellie, Stage IV since June 2008.

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Noramott's picture
Replies 7
Last reply 1/20/2011 - 4:35pm

I was just on here a couple of weeks ago asking for help for a friend that was diagnosed.  My husband passed away with melanoma 7 1/2 years ago, my mother passed away with it 37 years ago, my sister had one removed 17 years ago and thankfully is still with me.  Soooo, I go to the dermatologist every 3-4 months as a precaution because of the history and I have two kids, ages 15 and 12 ( the 15 year old already has had one removed between his butt cheeks...not a good experience for us or him).  Anyway, I went today and he removed a basal cell one, he thinks, but then said he has been wrong before and if it is a melanoma, it was caught early.  I wasn't worried.  I know that catching it early is the key, but all of the sudden it has hit me.  OH MY.  So pray.  You all don't know me, but just pray...for my kids....I am not scared, but then again, kind of.....................

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Anonymous's picture
Replies 28
Last reply 1/3/2011 - 8:33pm

How many people here with melanoma also  have red hair, blue eyes and have fair complexion? Just curious about how many actually fit the stereotype for high risk of melanoma. I have read it has something to do the with melatonin. Thank you

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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I have a friend who is stage 4....been complaining about pain in her gut since spring and her onc and pcp always caulked it up to something else other than melanoma...well now her scans are in and finally they have decided its a 5 inch spot of melanoma....they are talking surgery...wondering about something...can they radiate the intestines? She is weak and no longer in the chemotherapy trial ( heavy duty stuff)...just wondering...

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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KellieSue's picture
Replies 3
Last reply 12/30/2010 - 7:30pm

After finishing my second clinical trial(ALT-801) on Dec. 17 I had my CT scan on the 28th.

My neck nodules all look stable(thyroid involvement) but there seems to be some new lung nodules in both sides. We're not sure if they were there before, we never saw them but they could have been small I guess?

My oncologist seemed pretty bummed considering after my 1st trial I had immediate response, everything was either gone or very much shrunken.

He's not completely convinced the lung nodules couldn't be acting up in response to the treatment and with my next set of scans in 4 weeks could be completely gone. I'm really really really hoping that is the case as my neck has gotten swollen on the outside qutie a bit since finishing treatment and that doesn't seem to be bigger at all on the scans.

It's just a little hard to take to hear there are some new things on the scans when I just finished treatement. I have my Brain Mri today just to rule that out. Of course I've been convinced as of late that I have something in the brain. Some little headaches that come and go, forgetfullness, writing the wrong check to the wrong person with the wrong date. I know all of these things are normal everyday occurances, it just makes my mind go to bad places when I'm dealing with this crap. I know you all understand where I'm coming from.

Anyway, headed to brain mri now, hoping that this is all a product of swelling and the treatment still working. Thanks for reading my novel.

 

Kellie, Stage IV hoping to be NED?

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Wendi Lynn's picture
Replies 9
Last reply 1/3/2011 - 2:48pm

So, I know there were quite a few folks that started the one month HD Interferon around the same time as me.  Yesterday was my last HD and I'm SO GLAD it's over.  Lots of side effects, more sleep than I've had in months but I'm done!  I'm hoping that everyone else came through ok!  I also wanted to say thanks for all the advice and nice words.  Every little bit helps!

On to the next challenge!!!

Wendi

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EricNJill's picture
Replies 5
Last reply 12/30/2010 - 8:57pm
Replies by: JakeinNY, bcl, Joan C, KellieSue

http://well.blogs.nytimes.com/2010/12/28/the-tans-that-bond/

Warning: This article is truly disturbing!

227 female students surveyed, almost 40 percent had gone to tan for the first time with their mothers.  Are you kidding me?

Obviously, we need more information out there in the media about the dangers of tanning.  If they could see what a person with Stage 4 Melanoma goes through, maybe they would think twice.  Is it really worth it?  You may have a "glowing" tan but that tan could turn to tumors and death later...

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Anonymous's picture
Replies 4
Last reply 1/5/2011 - 11:34pm

I'm posting for a family member that is Stage III and soon will undergo ELND (after the sentinel showed a microscopic amount in one).  Hopefully the ELND will not show any more spread but if it does, I wanna help her make sure she is getting the best treatment she can. It doesn't look like NV has a NCI center. If it did, maybe that would be a good place to go. How does she make sure her onc is going to fight her life in every possible way? How do we make sure he's aware/active/literate of the phast III trials going on and will refer her if appropriate? 

Immediately is there anything she should ask the onc-surgeon regarding the ELND. Are multiple ways this can be done, are there speical scans that can be done during the surgery to make sure they are taking what they need. It seems like I read it really does matter how good the onc surgeon is performing the ELND. How can she make sure she's in good hands?

 

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I'm posting for a family member that is Stage III and soon will undergo ELND (after the sentinel showed a microscopic amount in one).  Hopefully the ELND will not show any more spread but if it does, I wanna help her make sure she is getting the best treatment she can. It doesn't look like NV has a NCI center. If it did, maybe that would be a good place to go. How does she make sure her onc is going to fight her life in every possible way? How do we make sure he's aware/active/literate of the phast III trials going on and will refer her if appropriate? 

Immediately is there anything she should ask the onc-surgeon regarding the ELND. Are multiple ways this can be done, are there speical scans that can be done during the surgery to make sure they are taking what they need. It seems like I read it really does matter how good the onc surgeon is performing the ELND. How can she make sure she's in good hands?

 

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truwill's picture
Replies 2
Last reply 12/29/2010 - 10:17pm
Replies by: nicoli, Dynasysman

I was just given this site by the Regional Cancer Center of Hunterdon County. I was glad to find the site for Melanoma Research. It's nice to know that other people are fighting this type of cancer. I never thought I would be a patient, but I am. I just went through breast cancer with my mom who is 85 and never once complained about her situation. God bless her, she has to care for my soon to be 90 year old dad who is losing is memory. I've lived and helped them with their daily lives for some 5 years now. Now I'm the one my mom and dad are concerned about. I went through a rough patch with this cancer on my head and those women around me in work and personal life can't believe that a woman can get this type of cancer.....There remarks were, "How did you get that on your head, you have all that hair...doesn't that happen to bald men or men who have little hair. They just can't believe that women are just as much prone to this then men are. I'm living proof that you don't mess with this and you get it checked out when you notice it. I was too involved with my work to take the time to go see a doctor. Worse yet, I work in Pharmacy and watch people come in everyday to my work to buy over the counter drugs and RX drugs to make themselves feel better.  Now I'm left with a spot the size of a baseball that has no hair and will never grow any and a rather sizable dent from the depth they had to go to remove the cancer. I have no feeling in this area at all and little behind my left ear and neck where they took the nodes. And this is all due to the fact  I ignored the SIGNS....Now the question for anyone that can help me is what can be done at all too my head. Am I destined to wear a wig for the rest of my life....or is there some procedure I can have to cover this huge spot....My doc came up with tissue expansion under my scalp. This sounds and feels painful.... IS THERE ANY OTHER OPTION FOR ME AND OTHERS LIKE ME....I'M HOPING I CAN GET SOME INSITE TO THESE....

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EricNJill's picture
Replies 9
Last reply 1/8/2011 - 2:36am

Eric has decided to donate his body for research to a local medical college.  After reading the article in the New York Times, we wondered if there was some place that he could donate his body where it would specifically be used for Melanoma Research.

Thanks, JillNEric In OH

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