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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Snickers60's picture
Replies 9
Last reply 12/7/2012 - 5:45pm
Replies by: madeclaire, hope4cure1, Tina D, Snickers60, audgator, POW, Anonymous

I share a little devotion on my FB page as the Lord leads and this is the one HE gave me for today after reading so many of your post last night.   I thought it might bless and encourage someone in some small way.

 

OUR GOD OF "NUMBERS" ! 

Do you know what temperature it takes to melt 24 carat gold - the purest of all gold ? "1,948 degrees F"

Do you remember how God scattered a rebellious Israel to all corners of the earth, but promised to bring them back together again to a land of full of FRUIT and PROSPERITY ? Guess what year that was ?
"1948" - the year Israel became a Nation !!! WOW - WOW is right !!!

Happens to be the year of my own birth, and the birth of my classmates. The Lord said THIS GENERATION would not pass away before all these things (prophecies) came to pass. HIS GLORIOUS SECOND COMING !!! 

IS GOD AMAZING OR WHAT ! As I grow older and a "LITTLE" wiser in HIS WORD and WAYS, I am astounded at how things "ADD UP" with our Lord. He is NOT A GOD OF HAPPENSTANCE - NOTHING IS CO-INCIDENTIAL. HE IS NOT caught off guard by anything, and EVERYTHING has a rhyme and a reason in HIS PLAN for HIS PEOPLE ! Hang tight if you are going through a dark night of the soul.....HE SEE'S IT ......HE KNOW'S ABOUT IT......and HE CARE'S !!! 

KEEP THE FAITH - DO NOT LOSE HEART - this is not the ONLY WORLD there is, and we cannot think, dream, or imagine what the one HE HAS PLANNED for us is going to be like ; but we do know it's going to be awesome, and IF HE IS TESTING YOUR FAITH to the Max, so that it might come forth as 24 CARAT PURE GOLD, take heart, know you're in HIS PERFECT WILL, and this is a process all the Saints are going through in order to be purified to receive the Kingdom He talks about in the scripture below, so that our lamps might be full of oil, ready on THAT DAY the Trumpet sounds. Even so come quickly Lord Jesus ! WE PRAY LORD, FOR YOUR KINGDOM TO COME ! 

REV. 21:4. And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. 

(WHOOOOOO HOOOOO, AMEN, PRAISE THE LORD is all I have to say). :-)))

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Tracy Chicago's picture
Replies 6
Last reply 12/7/2012 - 2:25pm
Replies by: audgator, rlowe, Tina D, Anonymous

So I have my cat scan today and I'm trying to suck down this disgusting barium drink and dreading the whole process, when I thought, hey, let's try to laugh about this and come up with new flavor ideas for barium.

What flavor do you wish barium came in? My vote is for a nice Pinot Noir from Napa Valley. Comment below with your suggestion!

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Tracy Chicago's picture
Replies 4
Last reply 12/7/2012 - 12:48pm
Replies by: Anonymous, Sharon in Reno, washoegal

Last night I noticed a mole that had changed significantly in what seems overnight. It has the same characteristics as the melanoma I had removed from my arm. I'm anxiously waiting for my derm to squeeze me in for a biopsy and I can't help but wonder if this mel will one day spread to my lymph nodes in my groin or leg. My primary had a 5% chance of spreading to my lymph nodes and it did spread to my armpit.  Gotta think positive, but it's so hard when you've already been through it before.

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I have been on this board periodically in the past.  Had a routine CT scan the day before Thanksgiving.  Sadly, I have recurrent disease after being diagnosed with Stage IIIB in 04/2008.  I had done perfect up until now.  Had 2 positve sentinel nodes.  CLND showed 33 other nodes negative for disease.  Did the year of Interferon.  CT last year was completely clear in 11/2011.  Now I have mets to the liver about 8 x 10 cm aggregate between the 2 liver lobes possibly involving the gall bladder.  There is also a possible peritoneal met near the duodenum.  There are some other intrapabdominal/mesenteric nodes. 

Emotionally difficult.  As all here know, life hangs in the balance.  I am having bilateral hip pain and calf pain.  The hip area was seen on the pelvic CT and no masses there.  I do fear given my symptoms the PET will show otherwise.  I am scheduled for a bone scan, PET scan and Liver Biopsy this coming week.  I'll meet with my local oncologist and also Thomas Gajewski at the University of Chicago this coming week to begin to explore options.  There are some but not extensive trials at the U of C.  Of course the marker testing will determine the options.  I am just beginiing to get a handle on the options/decisions.  I am fortunate or unfortunate to be a physician.  Still, this brings up a lot of complicated issues.  First, I need to work to support my family.   When I don't work, I am not earning security for my family and could lose my health insurance.  This is in a sense an orphan disease.  Hard to get informed recommendations from colleagues on where to go.  It is also difficult to drop everything at the drop of a hat and travel for therapy.  Still I know I have to be proactive and aggressive with the prognosis of this disease.  My fear is that given the progression from NED to extensive abdominal involvement, I have aggressive disease.  Probably not much time to be collecting opinions and not starting treatment.

The big question I have is where would be the best place for another opinion.  The usual places are being considered.  MD Anderson, Sloan Kettering, Moffitt, Mass General and the NIH.  These are not the only places.  What I am looking for is the place with the greatest access to trials and a team of physicians willing to be creative given the low response rate to the standarded therapies.  I am interested in the PD-1 trials.  I am not sure if they are still open and it seems you have to failed another therapy first before becoming a candidate.  It seems in the past the NIH was the place to be, but I don't see as much chatter about them as of late compared to last year.  I am looking for the opinions of those who have spent extensive time researching these insitutions and the conclusions they made.  I thank all in advance for taking the time to share their experiences and expertise.

Kevin

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Gene_S's picture
Replies 2
Last reply 12/7/2012 - 12:42am
Replies by: DeniseK, Snickers60

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Colleen66's picture
Replies 6
Last reply 12/6/2012 - 2:02pm

Was at the Medical Oncologist today and talked for 2 hours about treatment.  I decided on the clinical trial.  already screened at same visit.  3 Arms, Interferon vs high dose ipi vs low dose ipi.  Had all the blood drawn and ekg today.  Scans scheduled for the twelfth and 1st infusion on the 27. My head is spinning at the speed all this is going.  I want to thank everyone on this board for you knowledge and caring manner.  I know so much more about melanoma and treatments that my head just might blow up :) 

Keep up the good fight.

Colleen 

Live!

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Snickers60's picture
Replies 7
Last reply 12/6/2012 - 11:14am

And is not feeling well at all.   I cannot go because I am too ill and I'm anxious after reading such disappointing results for folks on

Zel.     He is still having horrible leg and foot pains.   The strange thing is it hurts the most after he goes to bed.   Shooting pain....terrible,

terrible, CRYING shooting pains.   While he is up on his feet they seem to be better, but the minute he tries to lie down and get rest, they

start and are so very bad.   WE DO NOT KNOW WHAT IS CAUSING THEM.

He had the before they did the heart cath and stent 2 weeks ago, so we do not THINK it is related to that.  We know there's a hand/foot

syndrome with Zel, but this is even different from that.   He is worried he may not be able to take full dosage much longer and IF it is

the ZEL causing them.

I'm dreadfully distressed for him to go alone.   We do nothing without each other, but I've just been so sick, I cannot go.  Waiting on knee

surgery soon.    He will fly in and out in one day which will really be hard on him.   LONG DAY !   Thank you for any prayers you might

say for him.     GOD BLESS ALL OF YOU WONDERFUL FIERCE FIGHTERS OF THIS MONSTER BEAST ILLNESS !    You are all

HEROES in my book !     LORD, give us all strength to endure these very hard trials.   

Nancy and Wayne (3 X Warrior)   <>< 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/6/2012 - 4:19am
Replies by: Snickers60, melmar, Gene_S

Hi,

I  just found this forum & a newbiew. I am still learning how to post & learn how to do my profie.

I have been on this Merck  PD1 drug since  Jan. 2012 just like Margo,who posted  that this drug stopped working for her. Needless to say, I am concerned  that this drug only works for a limited time and then stops working.

It would be helpful if other  people taking Merck PD1 would post their experience/response with MERCK PD1 drug.

Thanks for posting your reply.

Dianna

 

 

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Tina D's picture
Replies 5
Last reply 12/5/2012 - 7:12pm

Developed a very red and extremely painful eye over the weekend.Very irritated and light sensitive. Saw eye Dr this am & dx is uveitis and synechia ( which is the iris "sticking" to the lens). Off Z for now until further instructions from Oncologist. Being treated with prednisolone drops every hour, and atropine drops 4Xday. My routine PET is tomorrow. This is the 2nd PET since starting Z in May of this yr. Thankful the uveitis seems to have been caught in time to not cause any permanent effects, but I am not sure if this will cause me to be unable to continue on the Zelboraf. I will post when I have scan results, and answers for the next step...

Tina D

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melmar's picture
Replies 3
Last reply 12/5/2012 - 10:59am
Replies by: melmar, jim Breitfeller

I have not posted in a while as it has been a tumultuous couple of months.  In September, I learned I was no longer responding to anti-pd1 with growth in spots in lung and back and a new one in adrenal gland.  Started ipi two weeks later.  Have had terrible side effects -- fatique, itching, gastro, muscle aches and today learned that ALT and AST levels are greater than 5x upper limit.  So i have started 80mg of prednisone and am not allowed 4th infusion.  Feeling amazingly better after two doses of prednisone but worried about not receiving final dose of ipi.  Anyone out there achieving complete or partial response even without receiving all four doses?  Keeping the faith, but would love to read some success stories.  

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nsabel's picture
Replies 8
Last reply 12/4/2012 - 8:53pm
Replies by: nsabel, audgator, vivian, jim Breitfeller, Tim--MRF, Anonymous

Hi-- thanks for taking time to look at this question. 

My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

thanks so much,

Naomi

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Tina D's picture
Replies 8
Last reply 12/4/2012 - 7:31pm

I have actually struggled quite a bit over writing this, with so many suffering so much. My hope is to bring encouragement to weary ones.

I started on Zelboraf in May, then had to be taken off for nearly 3 weeks due to severe reaction ( hideous spreading rash). I went back on at a reduced dosage ( 720 twice a day). Tumors were in more than one area of my pancreas, in the messentery infront of pancreas, one near my aorta, one in my back muscle. I had my first PET/CT on Monday the 6th and on Tuesday the Oncologist reported that scans show NO evidence of Disease. None. Everything is gone. He was so thrilled to share this news with us, and we are praising God for this wonderful answer to prayer.

The current plan is for me to continue on Z at current dosage, re-scan in abt 3 months, then possibly lower the dosage to minimize side effects if scan is still clear. I am having the full range of side effects, it seems... though after this news, I dont mind them as much!

Again, I hope others can and will find encouragement from this.

With a grateful heart

Tina

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nsabel's picture
Replies 6
Last reply 12/4/2012 - 2:25pm
Replies by: Swanee, nsabel, Anonymous, kylez

Hi-- thanks for taking time to look at this question. 

My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

thanks so much,

Naomi

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Colleen66's picture
Replies 6
Last reply 12/4/2012 - 1:21pm

I am stage lll, NED after surgery .  A clinical trial was just brought to my attention by my surgical Oncologist yesterday.  There are three options available to me as I am considered high risk.  A clinical trial,. Interferon or watch and wait.

The trial has 3 arms consisting of a) standard interferon treatment.   B) high dose ipi.  C) low dose ipi.  The aim is to see if the ipi with high risk would be better than interferon at delaying recurrence and/or stopping progression.   My Oncologist even said the words "could be a cure for those at this stage"

here is the trial http://cancer.osu.edu/patientsandvisitors/cancerinfo/clinical_trials/Pag....  I am fortunate to have my doctors activily involved in these trials.  This trial is being held nation wide.  On the Page pick melanoma, next Page choose the second trial ECOG-E1609, Dr Kendra.

Any thoughts?

Colleen 

Live!

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samcanada's picture
Replies 3
Last reply 12/4/2012 - 7:26am
Replies by: Linny, samcanada, washoegal

I have read many post concerning scar tissue, but was wondering if anyone has any where the drain was? My husband had a drain for approximately 2 weeks after having nodes in his groin removed last November. What I think might be scar tissue starts just below the spot where the drain entered his leg and extends downward toward his inner thigh. He had been staged at 3A and needless to say I am extremely terrified of a recurrence. Thankyou 

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