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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jag's picture
Replies 6
Last reply 1/25/2013 - 5:10pm

I remember when I was first diagnosed reading about stage IV People who used Celebrex to keep their disease stable.  I was wondering if they are still alive.  Especially since a lot of people on here have been having trouble with pain management lately.

Insert Generic Inspirational Motto Here

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gbaum's picture
Replies 13
Last reply 9/30/2010 - 12:28pm

My wife Aze lost her battle with Vulva Melanoma.. She fought it for 10 months and the cancer won. Aze went peacefully and we were able to say what we wanted to to each other. I will miss here very much.. We just celebrated our 1 year aniversary on August 18th and she passed 6 days later.. Our baby Sophia and I will be moving back to the USA now to start a new beginning. 

I want to thank everyone for the advice and support we received from you all. I wish you all the best in this battle which I hope there comes a cure one day. Stay strong and don't give up hope.. God Bless everyone..

 

Gary

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ipi in DC's picture
Replies 4
Last reply 9/20/2010 - 9:20pm
Replies by: ValinMtl, Anonymous, Jim in Denver

Hey everybody,

Just wanted to update you on trial, 6 weeks in, 2 ipi infusions and Temador doses prior to this trip.

First for those who know my old handle, I changed it to ipi in DC instead of Mel in DC hope to one day soon change it to Mel out of DC.

We went to MD last Wednesday had CT & MRI on Thursday and then visited with Dr Bedikian on Friday. They were happy with the results so we could stay on the trial :) I have a subcutanous nodule on my lower back that shrunk from 12mm to 9mm and the nodules in the lungs did increase a little in size but it was half the growth than the previous six weeks growth prior to starting the trial.

Since the latest Ipi infusion and taking the Temador the nodule on my back has shrunk further and is almost hard to find. I contribute that to the Temador it did shrink the first dose also but regained its size a week later, but the second dose it shrunk and stayed smaller. So hopefully the Temador will breakup the nodules and make it easier for the Ipi modified T cells to come in and finish the job to totally destroy the remaining cells, which is how they discribed they were hoping this combo work. 

The side effects I am having to date is light constipation just while taking the Temador and nausea meds. Feel nasty for the last day of Temador and two days following (fells like the body has poison flowing through everywhere, which it is) then feel great until next dose. Light on and off headache during fisrts week after infusion. Skin rash I beleive from the Ipi on lower back, armppits, pelvic area at belt line. top of feet. The rash seems to like the hairy areas that hold sweat and heat. And rash type bumps spread out on forearms. Have a constant walking itch over entire body which I think is from the chemo (stops the body and cancer cells from dividing) drying out the skin, starts to get better just before next dose.

My bloodwork has stayed "perfect" on all counts according to Sandy  the research nurse (she was very suprised), which is great, I am less susceptable to infection.

Thats about it, please feel free to ask any questions or thoughts,

David

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

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Replies by: Love_Monkey, jtheisen29, Tim--MRF, King, Anonymous, paleskinisin

Rachael was diagnosed at 5 and has been NED since September 24, 2009.  We only have 9 more weeks of interferon and she's doing great!

I started a new project to help other families who have children diagnosed with melanoma.  I'm hoping it will be a place that new parents come come to, get their questions answered and not be scared.  I have linked this board in the "Resources" and would like to ask ya'll to keep this site in mind when you have parents of children come here to ask questions.

Littlest Warrior Spot

Blessings to you all!

Danielle

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The Gambler's picture
Replies 7
Last reply 9/21/2010 - 10:47pm

With much support from my " loving wife Deb " I feel informed enough to make a choice which way to go in reguards to what type of  treatment. Being at stage 3c my options did not seem to be many, my surgeon and oncologist said no to radiation and chemo which left Interferon and clinical trials. So I tried to soak up all I could on these two topics between the internet sites and my oncologist and it seems that being stage 3c limits my choices ( it opens up more for the stage 4 ).

Since my primary tumor was never found my oncologist said to me it was possible that my immune system destroyed it ( like it is suppose to ) but during the battle one or more cancer cells escaped and took refuge in my lymph node ( groin area ) and was well fed and nurished by the lymph system until it got big enough for me to feel it. If this is true it tells me my immune system was doing its job and there is a chance that it is currently doing battle with the bastards as I speak.

The information I read on the trials and interferon side and their effects frankly scare the hell out of me. I am aware that not everyone has the severe side affects but there is always that chance. The interferon is a year long commitment that can change a good immune system to a poor or non-existent one, opening the door to all the everyday germs and viruses ( even yearly colds and flu are killing people ). So I set out on a quest to get info on non chemical Naturpathic immune system therapy and I see it is a whole other world and most probable there are two camps "chemical and natural".

With being stage 3c at this time I feel I have a shot at the natural path although I know there is a possibility of being well on my way to stage 4 currently but untill I get my next Pet Scan there is no proof so I will continue on as 3c. One of the things important to me is quality of life and currently I feel good as I did before I was diagnosed. I have my loving wife, three beautiful daughters and two georgeous grandchildren.

Through all of this as Deb and I have tried to make sense of it all, understand the pro and con's of choices and decisions. I was imagining the inside of an old western Saloon where people brought in their last hard earned dollar in hopes that whether it be a simple deck of cards or dice you get lucky and get the winning hand  just like we are doing with melanoma, it all seems to be about  "odds, percentages ratio's".

For those of you who read this I would welcome your comments reguarding the Naturopathic Therapy care and what experiences they have had.

Thanks... Bob

bob.rogers2010@gmail.com

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Linda/Kentucky's picture
Replies 2
Last reply 9/21/2010 - 8:15pm

Anybody have an opinion on NCI in Bethesda for stage IV?  This was the first place mentioned to us with initial diagnosis.  Just trying to line up a plan "C" following scans due to be done in 2 weeks.

Judging by the way my husband is feeling at this point at almost week 21 in the Ipi trial  I'm afraid there is going to be a plan "C".  Very strange how he has roller coastered from feeling fairly decent during the last several weeks to feeling this bad again.  I'm not going to give up on Ipi just yet but I am beginning to have some doubts about responding to it.

Any information or guidance on next plan would be greatly appreciated.  He has done IL-2 and finished with Ipi.  He does have bone mets and having alot of pain from that.  Maybe some radiation for pain relief?  Also what pain med's has worked for others?  He has been lucky and only taken Ibuprofen 800mg. and an occasional Hydrocodone (doesn't like) but it's time for stronger now.  Thanks for any info. 

 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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lovingwifedeb's picture
Replies 6
Last reply 9/21/2010 - 12:15am

September 19, 2010

   

My husband and I took to heart the recommendation to find an oncologist in our area who specialized in melanoma and was willing to “jump into the boat with him” so to speak. Well, it ended up being the very same doctor that wanted my husband to join his melanoma cancer vaccine trial and broke to him the news about percentages and so on… Portland is not that big.

 

My husband had to admit to this doctor that he had him on the floor by the time he left his office on that first visit but admitted he has learned a lot since then and that he had lots of questions to ask him now that the shock was over. This doctor was very willing to work with my husband and answered all his questions.

 

My husband, Bob is stage 3c, if you remember and had only 3 choices of treatment after his surgery. The metastatic tumor that was located in his leg/groin was rather large, almost 3 inches in length. Although the primary melanoma was never found, one theory of the doctor’s is that my husband’s immune system destroyed it, another theory is that the primary was located in the tumor itself. No proof, no one knows for sure. So, for now some of the cancer cells “could” have escaped from the metastatic tumor in his leg/groin (or not) and until those cells get large enough to be picked up on a scan we will not know if he ever moves into stage 4, which I hope never happens. But if it does… then other therapies would then apply. For now his treatment choices are

1.     Interferon

2.     Cancer Vaccine Trial / 2 people get the drug – 1 person gets a placebo

3.     Do Nothing, Watch and Wait

 

I know my husband well enough to know that his decision was not made lightly. Most important decisions we have made together take great discussion or angst over. Both of us are alike in this so I know the process was difficult for him but I also know it was about quality. It was a difficult choice and a personal choice and it was strictly his choice. My husband has decided to watch and wait. He feels that this choice was necessary to protect his immune system as it stands today. He thinks if his body’s immune system destroyed the primary and the doctors couldn’t find it then this decision has to work in his favor for now. He does not believe in destroying his own immune system to the point that it has to be built back up again. This oncologist will keep a close eye on my husband with regular scans, exams and blood work, every 3 months, then every 6 months then once a year. I have also asked my husband to find a doctor/naturopath to guide him into stronger nutrient care. Anything that would help build up his immune system even more and bring greater strength and better health. Maybe between the two doctors and Bob’s determination we can turn this around for a longer period of time. I am here as his caretaker, his wife, the protector of his heart, and in whatever way I can support him.

This will be my last post in this group for now unless our situation changes (which I hope it doesn’t). Thank you for your support and your suggestions along the way. I have learned a great deal from those of you who have responded to me personally and to my postings. I have joined another group that might better fit my needs as caretaker and writer. As I believe I will be always living with the “Monster Under the Bed” I will be continuing to write about my fears and emotions. If you would still like to follow me please use the links below.

 

I have encouraged my husband to write about his own fears and to begin to post them to the MRF site and ask his own questions directly to you as I’m sure he would like to know if anyone out there has suggestions other than chemical. Look for him soon he will post under the name "The Gambler".

 

If you would like to leave Bob a message please send one here:

bob.rogers2010@gmail.com

 

 

If you would like to follow our family blog page please go here:

http://redesign08.blogspot.com/

 

 

If you would like to follow me in the  “Caregivers” section, the Cancer Survivors Network / the American Cancer Society website please follow this link:

http://csn.cancer.org/forum/138

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bcl's picture
Replies 12
Last reply 9/23/2010 - 12:46am
Replies by: bcl, Jim in Denver, Anonymous, Tim--MRF, paleskinisin, killmel

Cass is looking for a follow up to plx -I found this comment by Unite in the archives -does anyone know how close these combos are to trial?

 

Posted by Unite at 05:50 on Fri, Jul 23, 2010    [Show other posts by Unite]

In Reply to: Re: confused about inhibitors by Tom posted at 06:07 on Thu, Jul 22, 2010

Mek inhibitors have worked in Braf inhibitor delayed failures. Try the MEK or ipi trials next. I think ipi and MEK or BRAf inhibitor combination will ultimately work for many patients

(BMY is developing a BRAF which will probably be tried with ipi or like drug). Ipi and chemo seems to also work for some patients but I am not seeing a lot of trials for this combo.

 

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Nicky's picture
Replies 10
Last reply 6/15/2012 - 1:32am

I was reading a research article about a group of women workers who worked in the same building.  Many of them were diagnosed with breast cancer and the only similarity  they had were that they all had the mouse mammary virus.

It is also interesting that the new vaccination against a particular type of Human Papillimova Virus strain (HPV is a common virus which quite a number of the general population have) will prevent Cervical Cancer.

It may be a LONGSHOT but you also wonder if Melanoma could also be triggered/caused by a common virus and could be lying dormant with some of the culprits being the most common viruses for example like HPV or the cold sore virus.

I always thought it was odd that half my school sports team from 20 years ago ended up getting melanoma and my coach died of it later in life but it didn't occur until 20 years after.  I know a few of us had mononucleorosis (glandular fever) which was quite contagious at the time.  

As a survey, (anonymous if you wish), every remember catching a particular  virus, past or present?

 

 

 

 

 

 

 

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alleycat's picture
Replies 4
Last reply 3/20/2011 - 9:19pm
Replies by: LynnLuc, Soupison, Nicky, molly

My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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paleskinisin's picture
Replies 9
Last reply 9/21/2010 - 12:50pm

I'm wondering if there are any AZ patients on here that are later stage.  I'm stage IV and looking at treatment options.  I've been battling for 4 years and feel as though I do have a good team of docs, but I'm looking for second opinions for treatment and just wondering where the AZ folks go for treatment.

Anyone been through treatment here in AZ?  Anyone have a good team of docs to recommend?  Anyone been to Cancer Centers of America that just opened in AZ?

Thanks,

Tina

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King's picture
Replies 2
Last reply 9/18/2010 - 7:07am
Replies by: Rocklove, JuleFL

I know Sharon in Reno has been in my thoughts and prayers since her post on the 10th.  I hope that Hospice is doing their job and that Sharon is comfortable and at peace.  Also, thinking about her family and friends.

 

Stay Strong
King

Stage IV 7/05 LIver mets

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/22/2010 - 9:54pm
Replies by: King, Lori C, dian in spokane, Rocco, jag, Anonymous, Terra

Anyone hear from Rocco. I think that he had scans 2 weeks ago and he did not post results. So worried about him.

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