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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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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Mark_Catskill's picture
Replies 16
Last reply 10/11/2010 - 11:04pm

Hi Everyone.  I haven't logged in in a long time.  I am here to reassure everyone that it can be done.  Four years after developing both lung and brain metastasis, I uave noevidence of active disease.  A few old, asymptomatoc  tumors still show up on scans but they have not changed in over a year.  I am "stable" and the prognosis that I will remain stable is very, very good.

 

If you wanr to read about all the treatments I have had I just updated my medical history on my profile.  Just search for Mark_Catskill.

 

I will try to visit more frequently to share my experience and knowledge with the MPIP community.

 

Mark from Catskill
 

I have cancer but cancer does not have me.

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Has anybody heard from Kevin from Atlanta?  He used to be on here quite a bit.  I hope everything is ok.  If you read this Kevin please post and let us know how things are going.  I think you may be finished with the Ipi by now???

 

Linda/Kentucky

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

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Connie's picture
Replies 4
Last reply 10/11/2010 - 6:58pm

If anyone out there has any information or been thru treatment for radiation burn and an open wound in a melanoma site, I would appreciate any help you could offer.  My Mom had a very large tumor removed in June in her inguinal canal which was a melanoma, probably metastasis from her big toe which was amputated 5 years ago. The surgical site healed very well. She has two other deeper tumors in her pelvis, that they have left alone as they said her quality of life would be affected. She chose not to do chemotherapy as she is 82 and did not want to feel sick with what time she had.  About 4 weeks after her surgery, a lump reappeared in the area of the tumor that had been removed. Since her lymph glands were involved in the surgery, the surgeon did not want to drain that area as he felt she could end up with a permanent drainage. Her oncologist offered radiation as a way to get microscopic cells left behind in the surgical site and "slow things down". Her organs have been clear.  She had 4 weeks of 5000  ???Grays a day. By week 3 she was badly burned ( raw area on inside of left thigh around 5 to 6 inches long by almost 2 inches wide) and the lump was still there.  Prior to radiation I read the radiologist report which said the lump was fat. They continued treatment until completion. She was told she could end up with a bad sunburn. She ended up with her skin turning black.  She had her do rinses 3 times a day to the site and apply a burn cream.  Early this week she got feverish and yesterday ended up in the hospital. Yesterday where the lump was, (and is?), opened up and a bunch of ( my sister said) blood and pus came pouring out.  She lives in Montana and I live in Washington and I have called my sisters as I feel she needs some Doctors who know about wound care.  The site is being packed and she is on IV antibiotic..  Does anyone know about hyperbaric medicine and wound healing?   Has anyone had a similar experience and has gotten good treatment?  Her skin that was healing from the burns has also been impacted by the infection and/or fluid accumulatiion.  Do you know of ointments or dressings that you have used to keep one area dry and healing while another area close by, is draining and packed? Has anyone had lymphedema cause a similar wound and if so how did they treat your wound? I will be going home soon and any help on what to ask and what to do would be greatly appreciated.

Sincerely,

Connie

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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Janet2's picture
Replies 8
Last reply 10/10/2010 - 5:40am
Replies by: Janet2, Anonymous, Sharyn, lhaley, jag, Linda/Kentucky

I was admitted to hospital at the weekend and am home now -- was getting dehydrated from vomiting/sickness and had severe headache/dizziness. CT scan shows carboplatin hasn't worked and all my tumours have grown plus new ones. Also, I now have a tumour on my brain and a subcutaneous one at the back on the right-hand side. I've been told to have a week's quality of life and it is planned I should start whole brain radiation to deal with the symptoms and help with with quality of life the following week. I was wondering if anyone has had the whole brain irradiated and if so what are the side-effects during treatment and more long-term ones afterwards. Also, how long after treatment do the longer-term ones start and how long do they usually last? It is planned that I should have two sessions three -- four days apart. I am having radiation to tumour by right hip as well. They are leaving the rest of my cancer so I don't know how it will behave and don't know if they will recommend any further treatment as they say I may not be well enough. I have already been turned down for  Ipilimumab due to my mobility problems. Any information would be appreciated. By the way I live in the UK.

Janet 

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nj-Mark's picture
Replies 12
Last reply 10/10/2010 - 2:34am

Hi All,

After almost 4 years on my melanoma journey (see profile) I've now gotten to where it's time to wait this out.   I'm set up with Hospice and have been working with them to manage the pain from my abdomen and leg mets.

I'm hoping to continue to lurk on the board for a long time, but I wanted to say now I am so thankful for all of the wonderful support, virtual hugs, emails, and conversations I have had with many of you over the years.   You've been my rock and inspiration many times.

Warmest regards to everyone.   I really feel in my heart that a cure is coming soon.

-Mark

 

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Jaime.30's picture
Replies 2
Last reply 10/9/2010 - 7:08pm
Replies by: Jaime.30, amybusby

Eston was on Interferon for 10 months and it was stopped in late August due to what was thought to be stage progression to stage IV...so far doctors say the inflammation in his brain was not from Melanoma because not one cell was found.   He still seems to have what we call around here Interferon fog...memory slips or sometimes he just does not seem with it and some days he will wake up and you would have thought that he had just had a shot because everything hurts.  His joints are sore most of the time still.  I was wondering if this happens with a lot of Interferon patients.  Will these side effects go away eventually.  We have not seen the Oncologist since stopping the Interferon to ask these questions because he has been seeing the Neurosurgeon and was expected to go on to do WBR...so his appointment is not until the end of the month.  Thank you Jaime

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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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Anonymous's picture
Anonymous
Replies 4
Last reply 10/9/2010 - 8:36am
Replies by: A, Janner, EricNJill, Jaime.30

I recently developed pimple-like thing which is not a pimple. It is red in color and drives me crazy when I think about skin metastases. However, when I press on it, the color goes away. Is it possible for skin metastases to  "blanch"????

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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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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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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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kinthai82's picture
Replies 3
Last reply 10/7/2010 - 8:32pm

Hello all,

My name is Cynthia Chen. I am a medical student in California and will be graduating in May of 2010. I have long been an advocate of raising awareness, fundraising, and research for melanoma.

I, along with another one of my classmates, would like to create a video on melanoma awareness.  I want to recruit several people to put in the video who are either melanoma survivors or friends/family members who have lost someone to melanoma.

If interested, please contact me via this post, email (cynthiaLchen@gmail.com), or call me at 510-717-9782, and I will provide more details.

Thank you for your time! We will win the fight against this awful cancer!

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Hi Lauren,

 

Glad tosee you posting. How is Jenna doing? Hope her treatment is working.God Bless and hoping you have good news to post.

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