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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Andrew Langsford's picture
Replies 11
Last reply 11/1/2010 - 11:25am

I have had DCIT recommended to me by an oncologist. He said that after 2 doses he can tell whether it is taking effect or not.  Has anyone had this advice, or a good experience with DCIT?  The ipi would be the next thing, but it has come with a warning of drastic side effects to the bowels, anyone experience this?

Thanks for any help and experience.

 

Andrew

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BarbieGirl's picture
Replies 12
Last reply 11/14/2010 - 9:43am

Glenda.  A dear friend.  A fun person.  A true warrior.  One helluva classy lady.   I've missed her every single day, since she left us 4 years ago.  She's been joined by so many others in the last 4 years, I can't even count them all.  I know she's keeping them amused and up-to-date on the goings-on in Heaven! 

I love you my sweet, sweet Glenda.  I know I'll see you again someday....

~Lisa~

 

The first 4 pictures are how I want to remember Glenda.  Please STOP there, unless you want to see the harsh and ugly reality of melasuckanoma.  I took and posted the last pictures at her request..   I didn't identify her in the pictures, but SHE did.   She helped sooo many people here for many years, and even when she was dying, she wanted to help those who were always asking what Sub-Q's were.  Sub-Q's come in all forms, shapes, sizes, and colors.  Glenda's were the worst I've ever seen, and it makes me cry to even post them now.  But I know Glenda wanted people to see and understand how this horrible beast can kill in the form of Sub-Q's.  When I last spoke with Glenda, she told me her organs were clear---it was the Sub-Q's that were killing her---choking off her organs.  Very brave; God bless her soul for sharing with us.  Again, WARNING---these pictures are NOT for the feint of heart.

 

Glenda and "Grumpy" (Dave)...her hubby who joined the angels not too long before Glenda, at the Biltmore in Asheville:

 

Glenda grabbing DT's bootay at the Asheville MPIP Bash:

 

The 'smoking area' at the Michigan MPIP Bash---Glenda, my MamaG, Tim (King's hubby), me and Cigar Bob (Dian in Spokane's hubby):

 

Lady in Red----the last time I saw Glenda, just a couple of months before she passed.  She went to the restroom and came out looking like this..haha!  Still made people laugh even when she knew she didn't have long:

 

WARNING:  VERY GRAPHIC PICTURES BELOW!!!!

 

 

 

 

 

 

 

 

 

 

Sub-Q's on her arms: (NO, that is not her breast.)

 

And on her shoulder, neck, ears.....

 

 

These were HUGE on her stomach... football-sized and just hundreds all together:

 

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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mrsmarilyn's picture
Replies 5
Last reply 11/2/2010 - 11:07pm

Hi!

My brother Gary- who has been on GSK - BRAF 2118436 inhibitor at Sara Cannon - was asked by GSK to speak at their  Philiadelphia HQ - on Friday.  It was a worldwide teleconference - speaking regarding his 60% reduction in 9 months.  They gave him a tour- top secret - and all the researchers were so happy to meet a real live person with such success.

Lots of good things - happening at GSK - he is so happy!

Best of luck to all.

MrsMarilyn

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naty's picture
Replies 9
Last reply 11/3/2010 - 6:38pm

We are in West Michigan we I am looking for a recommended physician or treatment center in the region.  It is for my father who states he is wanting to travel if that is what it takes.  He wants to fight the best possible fight.  He had an oncologist at Spectrum Health and we did go to U-M and they offered only radiation to the head for 2 weeks and then temedor.   Where's a good place to start trials?  Karmanos in Detroit?  We are open to suggestions as my dad has just started his fight with stage IV.  Please share your thoughts.  Thank you!

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ipi in DC's picture
Replies 11
Last reply 11/1/2010 - 6:10pm

Hey Everybody,

Just got back into town from my scheduled scans during Ipi/ temador trial. As Jim I was enrolled in the trial in August, we are on the same weeks. The scans showed an  aprox. 25% decrease in all lung nodules and the nodule on lower back has decreased by atleast  half.

I also feel so lucky to be responding to the treatment, but yet guilty because so many others are still working so hard to find something that works for them or the same trial and not responding. It makes me very humble to be so lucky, (why do I get to respond and not everyone else).

I agree with Jim that we are not out of the woods yet, but it was so nice to have the staff come in smiling with good news. There is still a long way to go and a possibility of more side effects that can be very nasty. I do have a major rash that started the first infusion but has increased each infusion. The rash went nuts the 4th infusion and a constant itch over my intire body that just seems to walk from one spot to the next. It really seems to go nuts in the middle of the night. Unfortunately Benadryl doesnt work for me and never has. The Hydroxyzine seems to take the edge off, and I have found that Green labeled Gold Bond lotion and powder seems to be the best for me. The lotion makes you feel like your freezing cold until it dries.

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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emilypen's picture
Replies 10
Last reply 11/2/2010 - 8:49am

Hi All,

My husband is Stage IV, but is on a trial that seems to be working... his next CT scan is this coming week. I can tell it's helping, his pain is less, and his energy is up.

But he's on a new drug combo that really has no statistics yet... it's a shot in the semi-dark, so it's hard for both of us to look forward since we don't know how long it will work or even if he is a partial or full responder.

So my question to all of you is, how do you keep your spirits up? how do you keep looking to the future and planning a future with your loved ones?

How do you stay positive, and agressive? Even if a treatment doesn't work?

We're both positive people but the last few months have been incredibly tough and even now I'm fighting tears as I write this.

Any advice would help. Especially since on Friday we'll know if this drug combo is working or not.

 

thank you,

Emily

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Jerry from Cape Cod's picture
Replies 9
Last reply 10/31/2010 - 11:25am

Hello All,

I just recieved a call from Buddy's wife Nancy.  After a month in John's Hopkins Buddy has entered hospice where he is resting comfortably.  Please send your thoughts and prayers to Buddy, Nancy and their family. 

Nancy posted here and at the old site frequently, recently the care of Buddy and the family orchards have required all of her time and energy. 

I'll forward all posts to Nancy.  Also, if you'd like to send an email to Nancy please send it to me at jerry@JerrySullivanCapeCod.com and I'll forward it off to her.

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Justme's picture
Replies 7
Last reply 11/13/2010 - 10:26pm

Hi,

Background information, brother dx with melanoma from area on finger that was left untreated and undiagnosed for 9 months.  Had PET scan in June which lit up lymph nodes under same arm as finger and.  Finger was amputated, lymph nodes removed, one of 22 found positive, size 4.5 cm.  Very few of the nodes had normal color.

 CT scan  May 2010 showed few pulmonary nodules two in right lung one being 6mm and the other 5mm. maybe one in left lung.  Third nodule in pelvic area 6mm soft tissue.              

 

PET Scan lit up nodes in axillary area and the finger area. No nodes lit up in lungs in pet scan but saw nodules....may 2010

In July 2010 nothing lit up on Pet scan or any nodules seen. 

September of 2010 Began treatment of intefuron instead of interluekin as lungs were negative.  Is now on the self injections.

Last week had another CT scan which showed significant growth of lung nodules and increase in amounts.  One physician has told them that the PET Scan is more accurate, the physician they spoke with said today that the CT scan is more accurate than the PET when it comes to the lungs. 

Ideas, suggestions, questions,  Help Please?

Just me

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annballard's picture
Replies 1
Last reply 10/29/2010 - 10:51pm
Replies by: lhaley

Hi Everyone, 

I've been reading over the amazing posts. What support! I had a stage 3a diagnosis last spring, with removal of the tumor on my calf and two sentinel nodes which showed a couple of micrometasteses. I declined a full lymph node dissection on my leg and the interferon. 

Does anyone else have a similar diagnosis? I have semi annual liver panels and annual chest x-rays and so far so good. 

Thanks! 

Ann

Everything is for the Good.

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EricNJill's picture
Replies 6
Last reply 10/30/2010 - 3:58pm

Eric says that he is having problems with perifial vision.  I've noticed lately that he has been running into furniture and corners of the walls.  Yesterday when he came  home from work he had a gash and bump on his forehead.  He is a service manager at a goodyear and he said that a car was up on a lift and he ran into it.

They already had him scheduled for a Pituitary MRI because he's been so sick with vomitting and they can't figure out why.  They said it should also show up if there are any mets in the brain.  I was just wondering if this was a sign and if there were any other signs I should be looking for.

Thanks, Jill N Eric in OH

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brownie's picture
Replies 8
Last reply 10/31/2010 - 3:55pm

I had my pet scan done at Mayo in Jax. Fla. yesterday and, Thank God, they were clear.

IIIc for a year now.

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Jan in OC's picture
Replies 8
Last reply 10/30/2010 - 3:00pm
Replies by: killmel, jag, Jan in OC, Anonymous, BethA in VA

Hi everyone, its been a busy month for us and I finally found time to get here!  

Last month Dirk started having vision problems...Dr at UCLA said may be a side effect of the BRAF drug (they have recently added two new ones that effect the vision).  We had to visit the ophthalmologist...his vision has change 3 diopters in less than a month...they did not find any sign of Uveitis or RVO, so we are scheduled for an MRI of the brain next week to rule out Mets.  We will revisit the Dr to closely monitor his vision in the next few weeks.  

We have been on Hoffman-LaRoche BRAF for 10 cycles (28 days each), and his last CT showed no change to his mets.  We are scheduled for another CT day before Thanksgiving.  Dirk also is going to Physical Therapy to gain more range of motion in his shoulders and try to get a little stronger.  He has been feeling very frustrated, can't see as well, can't reach for anything without pain, needs help getting dressed...so I have been working to get him help to improve those.

On the positive side,  he did get to go to his 35 year high school reunion last week!!!  And we are grateful that he is still with us to celebrate the coming holidays (last year Dr said it may be his last xmas, scared the crap outta me!).  Halloween is this weekend, he is using all of his lymphedema wrap to scare the kids as a mummy!  What fun!  He still has his warped sense of humor and we try to keep laughter in the house.

I will try to update after the MRI results are in.

Stay strong

Jan

 

 

 

 

 

laughter is the best medicine

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BethA in VA's picture
Replies 4
Last reply 10/29/2010 - 11:30pm

I am celebrating today...I am 6 years NED.  This is my second go with MM.   I was NED for 10 1/2 years before my 2nd MM, and am well on my way again.  Just wanted to give some happy news.  Celebrate every day and keep positive.  Good luck to all of you.  Beth  3/B

Melanoma tends to cut into your looks!!

 

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Gwen in Maine's picture
Replies 21
Last reply 1/30/2011 - 2:43pm

Hello Everyone,

I've been reading the forums for a few months now and am grateful for such a supportive place to post.

Here is my history. I've been dealing with Melanoma for almost 2 years now - diagnosed 2/09, at 47, with melanoma in lymph node on my neck, unknown primary. I had false positive spots, via PET scan, all over my body so they took time and biopsies to make sure it was only in my neck. Surgery in April to remove the lump and surrounding lymph nodes, diagnosed IIIc. A month later I had five sessions of high dose radiation to the area and a month after that, started 1 month of HD interferon followed by 11 months of low dose interferon. I got through it ok, but it was not easy. Ten months into the LD interferon, I noticed 2 small nodules at the midline front of my neck. They thought it might be scar tissue but took a biopsy and it tested postive for melanoma. I had surgery in August, 2010 and the margins were clear. Before all this happened I had never had surgery in my life and have always been generally healthy and active.

There aren't many treatment options for me at this point. So far I've opted for watch and wait with scans every 3-4 months. I've also focused on eating a macrobiotic diet, which makes me feel like I'm doing something. Last week I found out my latest PET-scan was clear, thank goodness. My doctor talked more with me about doing the Leukine treatment. From what I've heard, the data isn't solid about whether it's helpful or not. Basically if I did it, it would be for the sake of trying anything that could possibly help it from coming back and spreading. Right now I'm feeling great though, and am hesitant to start something  that might make me feel as bad as I did on interferon, for only a little hope it could help. On the other hand, I've read that the side effects of Leukine are not as bad.

I'd appreciate hearing from those of you who have tried Leukine and what you thought about it.

Thanks so much,

Gwen in Maine

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ValinMtl's picture
Replies 5
Last reply 10/28/2010 - 3:36pm

Flu shots are coming to town next Tuesday and all of a sudden I have this dilemna.  I'm on compassionate ipi, has anybody taking ipi be allowed to have a flu shot?  I'm going to try to get answer from the doctors in the next few days, otherwise, I think I'll have to pass on it.  Val

Live Laugh Love Nothing is worth more than this day!

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