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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Lauri England's picture
Replies 6
Last reply 5/25/2011 - 2:13pm

Every since I was diagnosed with Stage IIIC melanoma on my right shoulder June 2, 2010 I do monthly checks on myself.  3 weeks ago I felt a small lump in my arm pit under my left arm. It was actually so small at the time that my husband could not even feel it.  I am 7 1/2 months into Interferon treatments.  I waited to see if the lump changed at all or went away because I know Lymph Nodes swell sometimes do to infection or sickness.  Last Friday I noticed it had gotten a little bigger, about the size of a marble and can easily be felt now.  It is not painful and it feels kind of soft.  I saw my Onc Doctor yesterday and he appeared to be pretty concerned and wants a biopsy as soon as possible.  I now have an appointment for consultation next Monday with surgeon.  I am glad it was so soon.  They are not sure if they will do the biopsy that day or schedule surgery.  I am trying very hard to stay positive as this could be nothing.  Has anyone else had a similar experience?

Don't sweat the small stuff. There are bigger fish to fry!

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PaulB's picture
Replies 9
Last reply 3/29/2013 - 9:29am

Hi Everyone!

I'm not sure if anybody remember me......

Its been long time that I haven't visit this site........Since I was Diagnosed on October 2002 Stage 3b Level 3 .

I have been doing very well for close to 9 yrs now and still cancer free!

I can't beleive that I have survived for almost 9 yrs and looking forward to 10 years anniversary next year as melanoma survivor.

Now, Everybody ...keep your faith in positive way, and not looking back in the past.

My family kept me going forward in positive life, that how I survived all those years!

GOD bless you all!

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TracyLee's picture
Replies 14
Last reply 5/21/2011 - 11:06am

I just found out today I'm now stage IV, with small lesions in my lungs.

it has not been a year since I was diagnosed, and I've had 5 surgeries.

I'm now referred to Johns Hopkins for ipi. I can NEVER go to the doctor and stay ahead of the curve. I always get worse news than I expected.

My four kids and husband are all taking it badly, and so am I. 

Friends from church came over when they heard, and I am so grateful. It's prayer or get drunk, and prayer is a better example to the kids! :)

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Lisa13's picture
Replies 7
Last reply 5/17/2011 - 8:07pm

I'm close to 3 months out from my WLE and lymph node dissection (groin). I've had a very small amount of lymphedema in  my leg but nothing major.  As a woman, I've also had some swelling in my vaginal area (sorry boys) :).  I've noticed a long, hard bump in between my scar (groin) and pelvic region.  I know it can be a number of things, but I wanted to know if anyone could suggest what it could be based on their own experiences.  There is no pain, it just feels hard amd long, not like a cyst and it's not on my scar. I'm not sure if I should make an appointment for my surginal oncologist to check it out.  I'm thinking because there is fluid there, it's created something abnormal.

 

Thanks,

Lisa

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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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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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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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itsmitzi's picture
Replies 9
Last reply 5/18/2011 - 11:07pm

I know oncologits don't like to order pet scans for stage 2 folks like me unless they are symptomatic,but my gp doctor wants to do a 2 year follow up pet scan.  The only symptom I have is a palpable lymph node under the culprit arm.

I sorta figure 'why not?' as it's a chance maybe to see if I'm all okay.

mitzi

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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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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 1
Last reply 5/19/2011 - 3:59pm
Replies by: TracyLee

Something I've just created. Find the words and phrases listed. "Melanoma" is odd because I couldn't get the letters to line up right, so either play with it and correct it, or, give yourself an extra point for finding it.

       SEEADERBMATOLOGISTRMPALEHIRU
       YU SQMIUBESUNSMARTMLSIWNILIHS
       OUSEASUNBLOCKDONTBESTUPIDEG
       GEDROHGIBANTANNINGBEDSCORUI
       RESFGOWIIANOTOSUNBURNSXMART
       SPPLEASEKNOWTHESKINYOUAREIN
       KNOWYOURMOLESBYHEARTPORWN
       MAPLIKNOWABCDSOFMOLESLKPHW

Melanoma

See a dermatologist

Be sun smart

Use a sun block

Don’t be stupid

Ban tanning beds

No to sunburns

Please know the skin you are in

Know your moles by heart

Know abcds of moles

Pale

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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Terra's picture
Replies 2
Last reply 5/16/2011 - 12:28pm
Replies by: Terra, emilypen

 

He does have mets in his liver, bone (ribs), one in kidney, and muscle, and I a few other places.  He has ct and mri coming up and was just taken off of P13K and Mek trial because of cv levels in blood (muscle breakdown). He needs a 28 day wash out period for ipi, it has been 10 days already, so nervous about waiting the next 18 days and waht can happen.  Next plan is TIL in Washington at NCI. Mentally and emotionally it is taking its toll. 

 

I know I don't want to hear these answers but Derek has some unexplained swelling in his wirst and forearm.  He has nerve issues in this arm and it is also where he has had numerous surgeries.   He also has been incredibly itchy all over - anybody have this coming off a treatment?

 

Thank-you so much,

Terra

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Carol Taylor's picture
Replies 4
Last reply 5/17/2011 - 10:42pm

Janner and Michael, I may have missed it and if I did I'm sorry, but I haven't noticed posts from either of you lately and I'm hoping you're each well and doing OK. You're each missed greatly! Like I said, there are so many pages of threads I may have missed something, but you haven't shown up in my email notifications, so just checking on you.

Grace and peace,

Carol

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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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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Replies by: triggerfish, boot2aboot

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&c...

Abstract:

Background: Serological typing for both HLA class I and class II antigen expression, has previously shown association of specific HLA antigen expression with clinical response and survival in patients with metastatic melanoma treated with IL-2 (e.g. HLA-DQ1). Purpose: To evaluate the impact of HLA class I (low-resolution) and class II (high-resolution) expression, on the outcome of high-risk melanoma patients receiving adjuvant high-dose interferon. Methods: 181 stage IIB, IIC and III melanoma patients (88 female and 93 male), median age 52.1 years and 246 healthy controls were included in this study. DNA was used for the determination of HLA-A, HLA-B, HLA-Cw, HLA-DRB1 and HLA-DQB1 genotypes. Results: With a median follow-up of 37 months, 59 (group 1) patients have remained with no evidence of recurrence and 122 have recurred (group 2). Statistical significant differences between the two groups, were found in the following genotypes: HLA-A*02 (42% vs. 57.3%, p=0.08), HLA-A*33 (15.2% vs. 6.5%, p=0.05), HLA-B*51 (15.2% vs. 34.4%, p=0.01), HLA-B*57 (11.8% vs. 2.4%, p=0.02). Statistical significant differences between group 1 and healthy controls, were found in the following genotypes: HLA-A*33 (15.2% vs. 6.5%, p=0.05), HLA-B*51 (15.2% vs. 28.5%, p=0.05), HLA-B*57 (11.8% vs. 4.5%, p=0.05), HLA-Cw*03 (23.7% vs. 11%, p=0.01), HLA-Cw*06 (27.1% vs. 16.1%, p=0.06), HLA-DRB1*0701 (27.1% vs. 13.4%, p=0.01), HLA-DRB1*1601 (35.6% vs. 22.3%, p=0.01), HLA-DQB1*0202 (23.8% vs. 10.1%, p=0.09). Conclusions: Statistical significant differences were seen in HLA-A and HLA-B alleles between the patients with high-risk melanoma free of recurrence and those who recurred after treatment with adjuvant interferon. Additionally, differences were seen between healthy controls and melanoma patients free of recurrence.

I'm me, not a statistic. Praying to not be one for years yet.

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