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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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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NicOz's picture
Replies 3
Last reply 10/4/2010 - 8:30pm
Replies by: glewis923, washoegal, Anonymous

I fail to see how choosing to post anonymously is not being respectful. If someone chooses to maintain their privacy by not using a recognisable moniker, then they are perfectly within their rights to do so, surely?

I don’t post anonymously here, but I also don’t ask many questions these days, nor do I have much to “offer”. Not everyone who visits this forum has travelled the more ‘typical’ route of melanoma progression or treatment. And with the amount of people concerned about “upsetting the natives” and “scaring people” with their stories, I actually feel that I have nothing to offer in most cases.

I used to post on here more frequently, but no longer feel part of the ‘community’ so these days it is fairly rare that I respond. I have nothing to offer with regard to chemo information that hasn’t already been covered in numerous posts. I have no advice to offer stage I, II OR III as I jumped straight to IV. I don’t even have much to offer stage IV as I only deal (at this stage) with brain mets using a mixture of surgery and SRS. Don’t ask me about liver, lungs, intestines, bones, subcutaneous mets... I have no idea or advice to offer. I will deal with them if and when I have to.

I don’t get on and talk too much about brain mets, other than to update any treatment I’ve had recently, and I’ve had that many surgeries that I’d just be repeating myself over and over (which would be a waste of time in my book) And frankly, sometimes I’m just too busy living as normal as possible life and spending time with my little girl.

Because I choose not to immerse in  and surround myself with melanoma does not mean that I have any less right to visit this site to lurk and see how friends are doing. If I choose to distance myself to stay away from here because I do not feel up to seeing one more ounce of bad news, that is my business. If I choose to push melanoma to the periphery of my life, then more power to me! I already have it in my body- I see no need to have it on my mind unless it is necessary.

I have divulged all of the personal information I intend to, and have no wish to go over it ad nauseum. There are archives for that.

I am at a different place to where I used to be, so this is what works for me. Times change. Circumstances change. Fear changes, and even abates. My needs are different. I have been around here for 2.5 years. Not everyone is at the same stage or in the same place, and I think people tend for forget that lately.

I don’t get my “hope” from anyone else, so I don’t come here looking for that. I do my own research on what interests me, and I’m qualified enough to do that considering I was clinical trial researcher prior to melanoma. I’m in a different country to most on here, so I’m not going to be any help with doctor recommendations, available trials,  disability/insurance/financial issues.

I don’t reach for NED. To me, it’s just another acronym. I’ve never been NED and that doesn’t actually bother me because, for now, I’m still living independently, still caring for my 5yo daughter, still doing the school run and still taking my girl on bone-jarring rides at the local show (fair, I think most call it) From November to June just past, I had 3 craniotomies (one of those was a double) and an SRS treatment, and there was not a month when I didn’t have to travel for medical appointments. For the moment, I’ve had 3.5 months at home, and I’ve been loving it.

Yes, I still have 5 tumours in my brain, but meh. When I get to the point where I need to have something done about them, I will (and no, they aren’t measured in mm’s IFKWIM) For the moment, we’re chugging along nicely.

My point? Not sure. Just letting people know that there are real people who visit this forum, and their reasons for not being active are likely many and varied. It is up to no one else to judge them for it. People have the right to be active, or not. To be anonymous, or not. Everyone has their own reason for being here, and it is no less valid because it doesn’t mesh with how someone else thinks it should be.

Rant over.

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

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Lori C's picture
Replies 12
Last reply 10/6/2010 - 8:36pm

On Wednesday night, Will stopped vomiting from the chemo and by Thursday morning felt better, except his voice was a little raspy.  By Thursday  night he was coughing and wheezing and I called an ambulance because he seemed short of breath.  They took him to a local community hospital.  He has pneumonia.  It's being treated and he is stable and improving, however, the experience was really awful.  The doctors at the community hospital were absolutely clueless about stage IV melanoma treatments and their side effects.  They told me he would die Friday night, they told me there was probably no point in treating this, melanoma was untreatable anyway, etc.  When I said "He's been responding well to the chemo", the doctor snapped, "What does THAT mean?"  I hauled out his latest CT scan ("reduction in tumors" , etc.) and the guy ignored it and sent hospice people in to me who told me, "Melanoma is a horrible cancer and there is no treatment that works."    I kept explaining that as long as he was responding to the treatment he had a chance at prolonging survival and opportunity for more targeted treatments, but was treated as though I was waving entrails and bones and claiming the fairies would heal him. 

I had his oncologist staff from Rush call the hospital and talk to them and things have improved since then.  He was moved out of ICU within 48 hours, he's getting breathing treatments and his appetite has improved.  His oncological nurse said that while his next chemo dose may be altered by this, this was NOT unexpected at 8-10 days post chemo when his immune system is so low..  What an experience, though.   I am anxious to get him back home and to his proper doctors. 

If I'd had any warning, I would have definitely just gotten him to Rush asap.  But this came on so fast that I didn't - and with breathing trouble, I was too fearful to drive him myself.   With his oncology staff insisting to the community hospital staff that this is "an acute crisis that is treatable", things have turned around but this was a big eye opener.  Stay away from medical staff who don't understand melanoma!

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Wendi Lynn's picture
Replies 2
Last reply 10/3/2010 - 10:55am
Replies by: DebbieH, Fen

Hi Everyone!

You are always so helpful, so here I am seeking help again.  I had a modified left neck dissection on 9/22 after a lymph node biopsy proved positive for melanoma.  Results are only the one lymph node was positive out of the 32 tested, so I'm very happy about that.  And I had a PET scan on 9/13 that was questionable on 3 lymph nodes in my arm pit.  My surgeon spoke with the PET doc (can't remember exactly the title of the nuclear doc) who said that the 3 in my arm could have been just enflamed.  With all that said, my oncologist said that if the lymph nodes were involved that we would need to do the interferon high dose and 11 month follow through.  I haven't seen my oncologist since before the lymph node biopsy (I have an appointment with him on 10/19). 

So, for those of you who have, sadly, too much experience with this, I'm looking for your opinions on treatment and timing of such. 

Thank you in advance for your words of wisdom! 

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Replies by: Jim M.

Hello Everyone, I have questions about if there are any other Choroidal Melanoma Liver metastasis patients on the site.

My husband was diagnosed in May 2010 with the liver mets and we have completed 2 rounds of chemo-embolization with ironotecan beads.

We are waiting on our CT scan results due Monday but meanwhile we ended up in the E.R. with edema throughout feet, ankles, legs, glutes.

We are told my husbands albumin levels are very low and that is causing the ascites and edema. We are told this is not a good sign.

Does anyone know of any natural treatments to help with this? We have had some success with elevation of the legs and lymphatic drainage.

We are scared and would really like to hear of any other survivors out there and how you are doing it.

Thank You

Suzie and Jerry     

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Bugandi's picture
Replies 3
Last reply 10/4/2010 - 12:16am
Replies by: Cynthia C, Bugandi, paul

Hi,

I had a recent PET scan that showed an 8 mm spot or uptake in my left lung, and am quite frankly, scared!!!!!.. I have had a couple of surgeries, but have been told that chest surgery is no walk in the park.  My oncologist discussed radiation as an option, anyone ever had radiation to the lung?s?  I go back in 2 weeks for a high resolution CT scan and then will have to make deisions as to how we are going to attack this.  I don't know what to expect, so any feedback would be appreciated.

Thanks

Bryan

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Bruce in NH's picture
Replies 8
Last reply 10/6/2010 - 2:15pm

Today is really a wonderful day. It seems like only yesterday that I was awaken by my wife at 4AM while on a business trip to Singapore, telling me that the mole I had removed prior to leaving was melanoma. Singapore is 12 hours time difference from my home in New England. I never felt so alone. But now I can celebrate 10 years of living beyond that day, thanks to God, wonderful physicians and medicines and great family and friends. I thought it important to share this milestone with those of you on the board who have recently been diagnosed with melanoma. There is a lot of support for you here, and we will try our best to see that you survive this disease as many of us have over the years. Take care, fight hard and have a wonderful weekend!

Bruce in NH

Stage IV since December, 2008

www.survivingmelanoma.com

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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