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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Linda/Kentucky's picture
Replies 8
Last reply 10/8/2010 - 10:38am

Just returned home from looong 2 days of scans, bloodwork and office visits.  Wish I could say results were good but I'd be lying.  After 6 months of following the Ipi trial I hate to report John was definitely not a responder..... I really didn't need thousands of dollars in scans and bloodwork to tell us this. We kind of felt it all along.  I'm really not on here to criticize the use of Ipi. it was a crap shot and we lost this round.  I pray it helps others and please do not be discouraged we would do it all again.  This melanoma that got into my husband must be a fierce thing because from the very beginning it has literally resisted everything we have thrown at it up until now.  We also found out on top of tumor progression that he has a blood clot in his lung.... we now have to deal with.

So here we are now back to square one...... My question is after surgery not an option, failed high dose IL-2 and now Ipi.  We may be looking at some type of Chemo as bad as I hate to say it.  Has anybody had any luck with chemo working at all?  We are also seriously thinking about the Novalis radiation (along with chemo) which is a very precise beam and works on bone,liver, lung.  Our oncologist today told us not to even consider DTIC.  He said Taxol/Carboplatin was a possible choice.  I have not researched any chemo therapies due to being told they usually don't work, well ok.......neither did the other one's we tried.  Sorry not had a very good day~ 

Thanks for any advise given.

Linda/Kentucky

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

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Kell's picture
Replies 13
Last reply 10/7/2010 - 9:00am

My Mom was diagnosed with melanoma in April. She had it removed in May and had 5 high doses of radiation. Everything was supposed to be ok or so we thought. Fast forward to Sept. 1st when I got a call that she had severe abdominal pain. Rushed her to the hospital where they did a cat scan and said they saw tumors in her intestines. She continued in pain until 9 days and so many tests later she went for another cat scan where a doctor saw that she had a hole and if she didn't have emergency surgery the toxins would go through her body and she would die. Preceded with the surgery where they repaired the hole and removed one of the tumors but weren't able to get to the other one. At first she seemed to be recovering then she got an infection and needed to have a drain put in. Last week I could see that melanoma was winning this battle and was about to take another persons life. Just watching her there in so much pain yet trying to hold on for her family was heartbreaking. On this past Saturday the doctor told us it's not good and if there was anyone that needed to see her they should come. Watching my Mom die when she had so much life and love left to give makes me so sad. For those of you that are dealing with this disease I hope the best for you.

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/6/2010 - 5:10pm
Replies by: lhaley

Can Melanoma cause a burning type pain in the groin area?

Thank you.

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Ranisa's picture
Replies 4
Last reply 10/6/2010 - 7:01pm

path report #1
Ten cross sections of four deifferent lymph nodes are examined on multiple slides. All cross sections are immunostained for HMB45. On one slide only, slide B2, in a subcapsular location four cells exhibit immunoreactivity for HMB45 staining. The cells are not cytologically abnormal. I can't say with certainty they represent malignant melanoma. They could represent nuvus cells within a lymph node.

Sent the slides to Mayo and here is what they said.....

I am writing regarding the material that you sent from RB, a 32-year-old women. These are very interesting and challenging slides. I am in complete agreement with the original diagnosis of malignant melanoma on the right leg. There are occasional mitotic figures present with lision as well as the measured depth of 1.1 mm. Sentinel lymph node is quite interesting. On H&E, there is a clear-cut deposition of melanocystic type cells present within the capsule of the nevus. A few of these cells stain positive for HMB-45, but the vast majority of them do not stain for HMB-45. This is an intersting pattern in that the majority of capsular melanocytic nevi are Melan-A/Mart-1 positive, but these cells as well as their architectural location that these are most consistent with a capsular melanocytic nevus.

My questions are.....
1. they say "nothing to be worried about" but then I heard something about a micro-matasti.....what is that, and should I be worried?
2. I was dx with a 2a, but no ulceration and with it being a depth of 1.1 wouldn't that be a stage1???

Thanks for reading and for those that reply...thanks for that too!

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Ranisa's picture
Replies 2
Last reply 10/6/2010 - 3:48pm
Replies by: Ranisa, Anonymous

Here is a link to my blog with my path results.... has anyone had anything simular with the staining?  AND why can't we copypaste straight on here?  It would have been so much easier.

Thanks everyone!

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bcl's picture
Replies 15
Last reply 10/8/2010 - 10:05am
Replies by: Becky, bcl, TinaR, NicOz, Anonymous, jag, JoanR, Fen, lhaley, Bonnie Lea, dian in spokane

I am nervous to post this, stage ones are not supposed to take up board space with stupid worries (was anon for this reason and also because I did not want to bring family along for this latest scare)    -but here goes.

The ENT specialist felt in my mouth, decided not to biopsy and wrote a prescription for pantaloc. He is very confident the lump is normal,  I have to trust him on this. For my peace of mind he agreed to look at it again in three months or if my swallowing problems get worse.  In the mean time, I had a physical Monday - have unexplained pain and bleeding -so now I'm waiting for a pelvic ultrasound. Thankfully I'm getting better at taking this one step at a time and am not imagining this latest problem is mel, (and unless mel is ever confirmed, I will not mention it again here again).  Thank  you to those of you who helped me through this.  I am very sorry for being so thoughtless, I really am out living my life.. just keep the dark bits for here,  linda

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bigday1004's picture
Replies 11
Last reply 10/9/2010 - 10:07am

So, my husband Tom and I have been married for 2 years now and last December 2009 he was diagnosed with stage 3 melanoma. In January he had a modified radical neck disection where they removed 45 lymph nodes 5 of which tested positive for melanoma.  He than went back in month later for his power port to be put in and the following month started the interferon drip. He had the drip for 20 days, 5 days a week for 4 weeks. He had a little break and than started with radiation which was 36 days (5 days a week) and during this time he lost 40 pounds that he couldn't afford to lose. Now he is back on the interferon maintainece shots which is 3 days a week until February. He has been working during all of this because if he doesn't work a certain amount of hours for FMLA we can lose our insurance, and I work part time and don't have benifits.

We recently got results back from his last PET scan and found out that there is now a spot on his right lung. Out oncologist talked to several other doctors to have a scope biopsy done on the spot to make sure it's not cancer. However,  because of where it is located no doctor will do it. I guess it is located next to some major blood vessels and it is to risky to do with a scope. In order to do a biopsy they will have to crack open his chest and remove the spot. Well the onocologist decided to wait because he doesn't want Tom to go through hell. He has another CT scan in 2 months to check up on the spot and see if it has changed in size.

It has been so rough for the both of us Tom more so than me. I feel like I have to hide my feelings and emotions so that I can be strong not only for Tom but his mom as well.  I have kept it bottled up so much inside that it's actually starting to wear me down mentally. I don't know who I can turn to because Tom already has too much on his mind with battling this demon and his mom needs me because Tom is her only child. It's hard I wont lie, and I am just praying that everything will go okay with treatments and scans. I need some good news for once because bad news is wearing me down.

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ValinMtl's picture
Replies 6
Last reply 10/20/2010 - 7:02pm

This has been a pretty sad week on the board. Losing both Wil and Kurt. It’s difficult even putting my thoughts together but I thought I should report on yesterday's treatment.

I had a cat scan prior to starting the trial and a pet scan 2 weeks (which was scheduled) after my first ipi treatment. Dr. G. gave me the results yesterday, prior to 2ndipi treatment.  She found the pet scan much more thorough than the cat scan and will be suggesting to the trial director that I have a pet scan rather than cat if it meets the protocol standards.

The main difference was that the pet noted a 5 mm focal abnormality in the posterolateral aspect of the left pulmonary lower lobe.  It’s very small but they will definitely be keeping an eye on it.

There was much more activity in my lymph nodes in the leg than in May’s scans. As well, lymphedema in the right leg, appears more severe than on the prior study. Not a surprise, since my tumors went from about 20 to more than a 100 between scans.

So what’s the good news. Dr. G. noted that some (as in quite a few) tumors seem to be drying out, she has seen that before when a patient has responded to ‘temodar’ .  Both my husband and I find that my leg appears not to be so angry.  Is ‘ipi’ working?  Let’s see what happens in the next few weeks!

Side effects of 2nd treatment..nothing to date.  Val

Live Laugh Love Nothing is worth more than this day!

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Lori C's picture
Replies 44
Last reply 10/12/2010 - 2:32am

William Thanet French, my beloeved Will, left me early Wednesday morning.   I was alone with him at the end.

I don't know if there was more I could do.  I tried - I am so sorry I could not give him what I so desperately wanted for him.  Right now all I can feel is a tearing pain.  The only comfort I have in any of this is that the pain, for Will, is over. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/6/2010 - 12:46pm
Replies by: bcl, JennerFromIowa, jag

There was a day when I came here some years ago inviting all of you to share in a mutual joy and it ended with no joy.  This is a difficult time for me as I once again relive that joy that ended in no joy.

It was a time that I was happy to be a survivor but at the same time sad to be one because the one so close to me was not.

It bothers me deeply of why her and not me, just as it has before then of why them and not me.

Grateful as I am for the life experience  melanoma has afforded me, I hate you for what you have stolen from my being.

One day melanoma, you and I will have a final reckoning.  It has been so long coming and you so have taunted me, but this day melanoma will indeed will come; and you just like me, you can not and will not avoid that day  when you and I meet once and for all.

Haughty as you may be as you rear back in your chair and laughingly accept my challenge ..just remember this--one of us will die, and it might not just be me, but it may be you, you  no good  son or daughter of a bitch.

The main reason is that just that once, you decided to show off and I saw you.  I know what you look like.

I will kill you

 

 

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KellieSue's picture
Replies 4
Last reply 10/6/2010 - 9:17am
Replies by: jag, Fen, lhaley, King

Eh!

Been having some hip pain recently, thought it was another tumor on my hip(I know, worst case scenerio always pops into my head)

After having an xray and speaking to the Ortho surgeon, I apparently just have weakened bones from hip radiation a year ago. He recommends partial hip replacement ASAP.  So onto another surgery on Friday am. Should be a pretty simple surgery(compared to some I've had.)

I gotta tell ya, between the hysterectomy, hot flashes and hip replacement I feel about 40 years older than I am!

In the meantime been waiting for IRB approval to start the redose of ALT-801. Grateful they haven't let me start yet since this hip problem came up.  Now I can get this surgery done with, heal up and be all ready for redose in a few weeks!

I met a nice Stage IV lady and her family today, Jackie! Dr introduced us as she's getting ready to start ALT after she has some radiation to her hip. Her sister said she had visited the board and noticed we lived only 20 minutes apart!  Hate that another person is having to go through this but nice to meet someone!

Super fun times folks!

Kellie(from Iowa) Stage IV

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

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Replies by: bcl

My mom is suffering from cancer and is looking for a lawyer in the san diego area that has experience dealing with hospice situations.  Can anyone help me out?  Thank you!

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Ranisa's picture
Replies 6
Last reply 10/6/2010 - 3:24pm
Replies by: Ranisa, bill58

Hi everyone.  New here and thought that this would be a great place to find a new doctor.  I will be moving to the Chicago area and need a new Derm and Oncolgist.  I planning the move soon and want to schedule appointments ........ I know the wait can be long for new patients.

 

Thanks everyone.

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BarbieGirl's picture
Replies 28
Last reply 10/8/2010 - 6:30am

Posted by his daughter, Kenda on facebook:  Kurt passed quietly at 8:35 this evening. We all thank you for your prayers.

 

Words are very hard right now.. only tears.  I wish I could talk to Kurt, or "Kah-nute" as I called him, just one more time, and let him know what he meant in my life.  If not a Saint, he was as close to a Saint as I'll ever encounter.  He was such an inspiration---such a wise man.  An evangelical Christian, he loved Jesus Christ with every fiber of his being.

I saved a post Kurt made here in 2006.  I'd like to share it with you all below, but BEG you, if you're not a Christian, PLEASE no bashing....just don't say anything.  Not now.  Not as his family and friends are grieving over the loss of a great man.  Just skip it and go to the pictures at the bottom.

  

 

"Thoughts on the Current Debate"    Posted by Knute on November 19, 2006 at 17:55:08:

"I took a peek at the board this evening and saw a bad situation turning worse. I feel compelled to weigh in- As a Christian. As a melanoma warrior.

Isn’t it just like our enemy, Satan himself, to divide people who share so much in common.

We’re all fighting a disease that has the potential to take lives. We have all seen friends lose their individual battles.

It hurts like hell! Amidst the medical talk, some dare to share their faith, taking the conversation to the spiritual plane.

This has become a divisive issue in this country that was FOUNDED by men & women who largely held to the teachings of the Bible. The freedoms we enjoy have allowed many belief systems to flourish. There are some areas of common truth that carry across most faiths. There are others that directly contradict one another. Mutually exclusive, they cannot both be true.

The TRUTH has been relegated to debate. Evil becomes good and good becomes evil in the minds of many.

Biblical Christianity... The total depravity of man rears it’s ugly head all around us. God has made a provision that we can look forward to a better aspect of life-

Eternal Life! Living forever in the presence of God! This IS a provisional offer. BG's daughter Leslie was bold enough to speak out that this Heaven is not open to 100% of those who ever breathed life on earth.

One of the most quoted verses in the New Testament is John 3:16-

“For God so loved the world that He gave His only Son, that whoever believes in Him should not perish, but have eternal life”

 Clearly implied in this passage is the “converse” argument- Whoever does NOT believe in Him should perish and NOT have eternal life

 Like it or not, that’s what God directed be written in His Word. Hundreds of other verses, both Old & New Testament speak of the same concept

 John 3:36 concludes the chapter containing the more “popular” Verse 16 saying:

 “Whoever believes in the Son has eternal life, but whoever rejects the Son will not see life, for God’s wrath remains on him”

 Doesn’t get any clearer than that!!

I too am an evangelical Christian, a “fully devoted follower” of Jesus Christ.

There is a right way and a wrong way to share one’s faith. Offering to pray for someone who has posted a need is VERY appropriate.

The MPIP family is being divided by some that are rejecting the Son. The consequences for them are frightening.

Is it not the responsibility of those who DO know the truth to sound a clear warning?

If a neighbor’s home was engulfed in flames early some winter morning, would you not try to rouse them from sleep?

Christians, literally translated "Little Christs" have been given the responsiblity of being God's Public Relations Department. It's called "The Great Commission" and is taught by Jesus Himself in the Book of Matthew- "Therefore go and make disciples of all nations..."

That is what is happening when people take the bold step of transforming a situation or conversation to one of eternal significance. Occasionally some toes are stepped on. Would we shrink from our "marching orders" in fear that we might offend someone?

Romans 1:16 "I am not ashamed of the gospel because it is the power of God for the salvation of everyone who believes"

The apostle Paul wrote these words around 2000 years ago during his third missionary journey.

In 2006 I am also not ashamed to speak the Words of God!

BUT, BUT, BUT. Is this the right place? Every day new people come here for information, for assurance. They are scared, they are confused, they are where we were 2 years ago when my own dermatolgist said the words, "We need to talk" in regard to the latest biopsy. Can we all agree to keep the Off Topic and the Main Board separate? I realize that this post is going to the Main Board, but that is where the current debate is happening.

2 years ago I found myself on MPIP for the first time. I received SO much valuable support as I learned about wide incisions and sentinal nodes and interferon and, yes, the power of prayer. It pains me to think that someone in the future might miss out on this conduit of vital information if we continue to engage in open warfare.

Dare I say, "Amen"??"

 

Kurt, I love you, my Norwegian friend.  I know Heaven is rejoicing and you are now walking on those beautiful streets of gold.   I will miss you, forever and always, until we meet again.  ~L~

Our first meeting and hug.  That hug will last a lifetime.

I dared him to wear his Viking hat.  He did! 

Of course, then *I* had to try it on....

He also brought his wooden stein.... Cheers!!

Pam and Kurt... I forgot what kind of hat she had on her head, but isn't she just cute as a bug?

Pam and Kah-nute... my favorite pic of the two of them!

 

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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cwparson's picture
Replies 7
Last reply 10/5/2010 - 10:29pm

I have been blessed with my fourth clear PET scan.  It has been two years since my last surgery. 

I have been stage IV since 2001.  Eight major surgeries, lost my right kidney and two years of chemical treatments. 

Thanks to all of you for your help and inspiration.

ChrisP

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