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.

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To the board:

Its been a few months since I posted, but wanted to ask a question to those that have had intestinal surgery. In February, I had a golf ball sized tumor removed from my small intestine via a partial bowel resection. Recovery was pretty quick (3 days in hospital) and all was fine until 4 weeks ago, when I was unable to get to sleep on a sunday night due to extreme abdominal pain. Wound up spending 3 days, 2 nights in hospital as it ultimately corrected itself without any treatment. CT revealed it was a partial obstruction.

Then, last week, same thing happened. Admitted to Sloan Kettering on Tuesday. CT revealed partial bowel obstruction plus, unfortunately, a small tumor on the liver. Obviously the news about the liver was most heartbreaking, but the pain from obstruction was most important to fix immediately.

My question, has anyone else had to deal with multiple small bowel obstructions? How did they resolve and did u need surgery again to fix? If so, have u had any problems since your corrective surgery?

I had an NG tube for 2 days last week, was uncomfortable, but it worked wonders. I was released on Saturday night, felt great yesterday and this morning, and then about 4 hours ago, have started to have similar pain/cramps. Really would not like to go back to hospital, especially as my doc basically said if I come back, I'm going in for surgery. Does anyone have advice on how these can be avoided? Diet perhaps?

Also, as far as liver goes, mine appears to be resectable, its small at 0.6cm near the base of the liver. The radiologist missed it the first time in fact. The docs at sloan recommended IPI (Yervoy) as I haven't done anything since I was stage 3 and did interferon. Any thoughts on getting it resected? Docs advised against it for now. They did mention possibly post treatment, I get it ablated. 

Any and all advice welcome.

Kind regards

Wetterhorn, Stage IV, Liver Met

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Shelby - MRF's picture
Replies 4
Last reply 5/17/2011 - 3:40pm
Replies by: Ali, washoegal, Charlie S, King

We are happy to report that in the next couple of hours, the bulletin board changes that you recommended to us will go into effect.  They should be fully implemented by approximately 4pm EDT today.  This change will make the bulletin board topic posts sorted by the topic post date, rather than by the last comment date.  This will be the default.  You can also choose ascending or descending.  You will have the ability to sort it "the old way" (by comment post date), should you want to.  It will remember your preferences only if you have a registered profile. 

Thank you very much for your patience and please don't hesitate to contact me if you have any questions.  Have a wonderful day!

Shelby - MRF  

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Nebr78's picture
Replies 2
Last reply 5/17/2011 - 2:08pm

I have one thing then another with this M-stage iv.  Lumps, tingling, weakness all over.   Now this:   There was always supposed to be a small mass on my lower spine but caused no problem.    For about 2 weeks now, sever pain in lower left on my back.    Pain pills having hard time challenging it.

Took a ct scan and waiting for Dr. to give results.   He said possibly if mass grew  it could cause the  pain..  Some of the other stuff has left.   He said if mass has grown he will recommend radiation.  Just got done with a bunch of that on face, chest.

If anyone has had a similiar thing I would appreciated you telling me.   Remember I am 79yrs. old and have heart disease for 40+ years.

I think I am going to have a raffle so my wife  can have some money.    Sell ticket to see which one: (heart or Cancer)  gets me first.  !!!!!!!!!!!

I seem  to learn more about me on this forum than when I go  to Dr.   Which is 3-4 now.     Thanks

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carol b's picture
Replies 7
Last reply 5/17/2011 - 10:16am

Well,, 4 of my tumors have disappeared, no sign of them at all. YEAH!!!!  The Huge one under my arm has grown 3 more cm. It was no surprise as you can literally sit and watch it grow.. I have a small 3mm mass on my tenth rib and a small 5mm mass on my right lower lobe of my lung. Neither has been tested to be cancer.. I refuse to believe it is as there could be so many more benign things that they could be. I have a spot on my hip bone with FDG uptake. I'm gonna say that where they took out a piece of bone for a spinal fusion in 2000.. I'm refusing to believe my cancer has spread. I will get my IL2 on Wed. and it will knock out any little thing i have, I believe this From my very soul. God is holding me and he wont let go. My prayers are all with you on your journey, what a horrible disease this is. It affects every one that loves us. Its as if they have it to. They have the same feelings we do but do not ponder on it like those of us with the disease. Myself i have rather have the disease than to have to watch someone i love die slowly.. Anyways. i will say prayers for caregivers as much as for you that has the disease. I want to thank all on this board for helping me get thru this. Its amazing how a few little words from someone you have never met can make you strong..

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Carol Taylor's picture
Replies 14
Last reply 5/17/2011 - 3:02am

Everyone, this is an SOS for Eric. Jill just posted on the facebook page she has about what's going on with him. It's not good. I'm not going into detail, but please trust me on this. They both need your support and prayers like never before.  Bombard the throne of heaven.

Lord, in Your mercy, be merciful now! Amen.

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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CLPrice31's picture
Replies 14
Last reply 5/16/2011 - 9:09pm

Hi all. I went for my latest CT/MRI scans...everything is clear except the new development of a thyroid nodule. My oncologist said he was concerned, that we need to do an ultrasound, but that most thyroid nodules are benign. Should I worry? (Of course I am going to regardless...but....) Has anyone else had an issue? I am still set to begin the ipi trial at Memorial Sloan Kettering on the 20th, so he must not be *that* concerned...right? frown

 

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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gabsound's picture
Replies 13
Last reply 5/16/2011 - 8:54pm

Hi, I live in las Vegas and was recently diagnosed with stage 3 melanoma (thick lesion with ulceration, 1 positive node). About 5 years ago I had a basal cell cancer on my upper back and have had quite a few atypical moles removed that were moderate to severe dyplasia. My melanoma started as a pink lesion on my leg inside the knee region. Two different PA's from different Dermatology practices saw it and were not impressed. Finally I kept pestering with "what is this" and the edge got frozen because it was getting crusty like an actinic keratosis. At first it got smaller and peeled, but later started bleeding after I picked at it and it never healed. Biopsy came back melanoma.My PA thought was going to be a squamous Cell so did a shave bx (i;ve read that was not good). About 3 weeks ago I had a wide local incision and sentinel lymph node bx. Unfortunately sentinel node was positive with micrometastasis and woke up from surgery with rest of lymph nodes in the groin removed (I knew this was a possibility). I'm healing up fairly well and have tried going back to work part time this week,

My blood work LDH is normal. I am awaiting results of my PET scan. Prior to pet scan I met with my oncologist, who said treatment for pt's like myself, fall in a "grey area". He said the interferon treatments are falling out of favor and said he was recommending a watch and wait for now. He is also checking with an associate who does more melanoma research (dr. Samlowski) to see if there are amy clincal trials I should be in.

In doing research, I see for stage 3 adjunct therapy MAY be offered. Initially I was relieved thinking I could just get back to my life, but find myself doing more research and wondering if that is the wisest choice. The statistics for this cancer are pretty grim. The oncologist said interferon " is like having the flu for a year"-I don't know that I could handle that. Also, from what I have read it doesn't sound like it improves the overall survival rate, but delays return by about 7 months. So you kinda lose a year up front to get some time later-this sounds like kind of a wash.

 

I'm wondering if any other stage 3 patients can comment on if they were given the watch and wait choice and what you decided to do and why.

Also please feel free to correct me if my understanding of what I've heard and read so far, appears wrong.

Sorry if I rambled a bit. It is such a relief to find this site and read these posts from people going through exactly what you are!!

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Lisa13's picture
Replies 2
Last reply 5/16/2011 - 6:35pm
Replies by: Lisa13, Carol Taylor

on

Many impossible things have been accomplished for those who refuse to quit

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MMarieMetcalfe's picture
Replies 5
Last reply 5/16/2011 - 5:51pm

Does anyone know of any doctors in Delaware that specialize in melanoma that they would recommend?

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kjshaner444's picture
Replies 4
Last reply 5/16/2011 - 5:48pm

I have Melanoma. I begin Interferon on Monday. Thank you.

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shellebrownies's picture
Replies 6
Last reply 5/16/2011 - 5:18pm

Anyone on this trial? Just wondering about response rates and levels of side effects...

 

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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kim2712's picture
Replies 3
Last reply 5/16/2011 - 4:48pm

My son is very, very ill as you know from my post titled "my son's journey thus far". He continues to decline. His lungs are full of fluid and tumors, as well as many other area's of his body. He also has horrible lymphatic swelling from the diaphragm down to his feet. The doctor will not give him anymore chemo as it did nothing for him. He did agree to give him a dose of ipi a week ago yesterday. He has gained over 60 pounds of fluid weight in the last few weeks. He and his wife want to try Gersen therapy but can't find anyone here to administer it. I don't know that he has enough time for that to work anyways. Is there anything else out there that may help him?

Thank you,

Kim

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shellebrownies's picture
Replies 5
Last reply 5/16/2011 - 4:46pm
Replies by: chenrydh, Anonymous, RMcLegal, Carol Taylor, Terra

My husband will be starting a trial tomorrow and he will either be taking just ipi or ipi and GM-CSF. Can someone let me know what kind of side effects are common to experience? 

Also, I've been told it can take some time to work...I also read about the tumor sites becoming painful and warm. Does that happen regardless? Or does that only happen in the patients that the medicine is helping?

Sorry to be bombarding the board as of late, but I'd like to have as much information as possible going into the appointment tomorrow. Thank you!

 

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Here is a link for a newspaper article written about my son on Friday, May 13th. It will only be on the site until Monday afternoon, May 16th, so check it out soon if you want to read it.

 

http://www.timesrecord.com/

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Rendergirl's picture
Replies 28
Last reply 5/16/2011 - 2:26pm

Hi I'm Becca, stage III. I don't know if I'm 3a, b or c... can't seem to get an answer from my doc. Anyways, had Melanoma on my upper chest, had a wide excision done, Lymph node biopsy in right armpit was positive for cancer. Had all lymph nodes removed 1 1/2 weeks ago in that arm, they all came up negative, so only the initial node was cancerous.

My oncologist has been waiting for surgical to get done with their part before he suggested further treatment, and now they are done. I'm scheduled to see him the day after tomorrow and I'm wondering what he's going to suggest. I know he's not a big fan of Interferon. As he said, it makes you feel like you have a bad case of the flu for a whole year. That doesn't sound like fun. My mom says she's going to push for observation, but I want to be proactive and make sure it doesn't come back. I don't want to just "wait and see". So what do you think my oncologist will suggest? And if he does suggest only observation, what does that mean? What kind of scans and/or tests and how often?

Thanks for any feedback...

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