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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swissfarm7's picture
Replies 5
Last reply 4/7/2013 - 4:27pm

Can't think how to title this post; forgive me, please, if the phrase "watch and wait" doesn't work for you.  I feel like we're in limbo on this melanoma journey.  It's difficult to know how to process where we're at and even more difficult to explain to others. 

Six months of interferon was enough for Hans (stage 3B).  His white blood cell counts were so critically low for so long, he would have needed another drug to counteract the effects of the interferon.  He understandably wasn't willing to go that route.  So now it's a matter of...what?  People here that he stopped the drug and glibly ask me, "Oh, he's all better?" or refer to him "kicking cancer".  They ask if he's in remission.  And, well, I don't know how to respond.  How have the rest of you handled this?  I usually just tell people that as far as we know there's no current evidence of the disease and that he'll have another scan this summer.  I guess that's all there is to say, huh?  I don't know...Some how melanoma seems so different from other cancers.  That's why I'm posting here.  Because in "real life" I know many people who have encountered cancer, but not a single one who's dealt with melanoma (or at least not at this stage).

Best,

Colleen

Keep on keeping on.

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aldakota22's picture
Replies 22
Last reply 4/7/2013 - 10:06am

I officially start my 14th month on Zelboraf.Thank God that I am B-raf +.This drug is a lifesaver for me and so many more.Dealing with the side effects for me has been tolerable.They do sort of come and go as I contiue with"Z".I aim to be a glimmer of hope to many stage 4 fighters.I have been following the posts of Dick who is going on 31 months of "Z" and still counting.Hang in there.They will find a cure.Meanwhie never forget to thank God and live. Beat the Beast.  Al

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joy_'s picture
Replies 5
Last reply 4/6/2013 - 8:35pm
Replies by: Linny, joy_, awillett1991

Hi everyone!  My husband has been on Zelboraf (960mg twice a day) for almost 3 weeks now.  He has the "usual" side effects of body rash, fatique and a little hair loss, but one that he is having that we haven't seen discussed anywhere is lymphedema.  He had a radical LND (groin) almost 3 years ago and has never had much of a problem with lymphedema in that leg.  It has been very mild over the past few years, but since he has been on Zelboraf it is a problem and very uncomfortable.  Compression stocking doesn't even seem to help.  Any thoughts on why this is with Zelboraf?  Just curious if anyone has any insight or experience with that.

He only has 3 more weeks to go on Z and then on to Ipi as part of a trial so I feel certain this is temporary, and we will be trading these side effects for a new ones soon....

Thanks for any feedback and keep up the good fight!!!

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Gene_S's picture
Replies 27
Last reply 4/6/2013 - 11:28am

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

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SDC_Bolts's picture
Replies 9
Last reply 4/6/2013 - 9:56am

Brief overview of our story.

My wife (33 years old) and a mother of two, was diagnosed with melanoma in April of 2010.  The melanoma was in her groin area, a area not exposed to the sun, and she is not a tanning bed person.  Had surgery on April 30th, 2010, to remove tumor in left groin, superficial lymph node dissections left groin, 2/3 sentinel were positive for melanoma, 29 lymph nodes removed from groin area at that time.  Started Luekine injections for one year.

Feb 21 2012, reoccurrence in left groin, surface melanoma removed along with smaller tumor underneath it.

April 2010, blockage in pancreas causing issues, whipple procedure done to remove blockage and resumed luekine injections.

July 2012, another melanoma removed. Continuing injections.

October 31st 2012, stomach/back issues, found tumor in bile duct of liver, stint put in place to allow bilirubin to pass, moved on to ZELBORAF (vemurafenib). At this time tumors were in abdomen area as well. Started ZELBORAF on Nov. 9th.

PET scan 3rd of January 2013 were great, almost all cancer was gone.

Late January of 2013, tumors grew throughout abdomen and liver. Started 3 drug chemo therapy treatment January 26th. Drugs were Avastin, Abraxane, and Carboplatin. 

While on chemo, my wife was doing pretty well.  Then she had severe pain in her back, after further review found out she had two stones (we knew these were present before) both drop to her ureters, one on each side. She went through 3 or so weeks of hell, getting temporary stints due to bacteria around the stones, then a week later getting those taken out, stones removed, and then temporary stints back in place to be removed a few days later.  Once these were removed, she was still in severe pain intermittently, which we thought was due to the stints.  Finally after a week of this we went back to the hospital to get another CT, which then showed that more tumors had grown and were around her kidneys and lower intestine area.

At this time she had just done a chemo treatment so we had to wait awhile before the next treatment stage.  We just started YERVOY yesterday.  As I understand it this is a great drug but slow acting, this is why the Dr's didn't want to try it earlier, they wanted to get a jump on the cancer before going to this drug. 

At this time, there really are no other options being presented to us, I do have confidence in the place we are being treated, but wanted to know if anyone had any other experiences that they would care to share, or options they can think of.  We are willing to travel for further treatment, as of now we go to Mayo Clinic in Rochester MN, which in our area is the best around us from what I understand.

Thank you for your time reading our story and hopefully some valuable input.

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meeshka6059's picture
Replies 3
Last reply 4/6/2013 - 9:54am
Replies by: susanr, meeshka6059

Has anyone experienced this?

Dad's 3 doctors, oncologist, neurological radiologist, and internist (who works at their retirement community) HAVE NOT called Mom at all. Not during Dad's time on hospice (when we tried to call we were told they were on vacation... all of them?!) or since Dad's passing on 3-26-13. Mom and I are upset about this. Even the vet contacts you when a pet passes away. Of course we are trying to let it go but.... come on.... a call? a note? something? anything???!!! Or is this standard protocol when someone dies "on your watch"?

Dad's cardiologist sent a beautiful note when she found out.

What gives?

Thanks,

Michelle

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sharmon's picture
Replies 12
Last reply 4/6/2013 - 9:43am

is almost over.  he is in hopsice in ohio.  oxygen to 60.  blood pressure is low and his temperature is low,  heres the kicker.  after not having anti pd 1 since the end of jan and his tumors growing in feb,, they are now shrinking and he is to sick to move from hospice to any kink of nursing care for iv fluid or any kind of oxygen to help him live.  I can see the big tumor almost down to nothing and the the smaller one on his flank is gone.  they will not consider that at this point there is anything that can be done since his system is shutting down. 

the lesson from this is to not go to hospice care after an immuntheraphy because it can take some time to work. 

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lrkg1234's picture
Replies 2
Last reply 4/5/2013 - 7:02pm
Replies by: awillett1991, kkhalsten

My husband Scott is really helped by taking Zofran for nausea, he needs one a day. 

The insurance only covers 10 and gives us a lot of trouble to get more.  It's a big hassle and worrysome.  He needs the Zofran in order to maintain his weight.

He is going to see if his oncologist can do something to improve the situation, maybe write an letter or call??

Has anyone else had this happen and what did you do?

Thanks, Lisa

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Thought you might like... There is a longer version with more info on the web.

J Neurosurg. 2012 Aug;117(2):227-33. doi: 10.3171/2012.5.JNS111929. Epub 2012 Jun 15.
Radiosurgery for melanoma brain metastases in the ipilimumab era and the possibility of longer survival.
Knisely JP, Yu JB, Flanigan J, Sznol M, Kluger HM, Chiang VL.
Source
Department of Radiation Medicine, Hofstra University North Shore-LIJ School of Medicine, Hofstra University, Manhasset, New York 11030, USA. jknisely@nshs.edu.
Abstract
OBJECT:
A prospectively collected cohort of 77 patients who underwent definitive radiosurgery between 2002 and 2010 for melanoma brain metastases was retrospectively reviewed to assess the impact of ipilimumab use and other clinical variables on survival.
METHODS:
The authors conducted an institutional review board-approved chart review to assess patient age at the time of brain metastasis diagnosis, sex, primary disease location, initial radiosurgery date, number of metastases treated, performance status, systemic therapy and ipilimumab history, whole-brain radiation therapy (WBRT) use, follow-up duration, and survival at the last follow-up. The Diagnosis-Specific Graded Prognostic Assessment (DSGPA) score was calculated for each patient based on performance status and the number of brain metastases treated.
RESULTS:
Thirty-five percent of the patients received ipilimumab. The median survival in this group was 21.3 months, as compared with 4.9 months in patients who did not receive ipilimumab. The 2-year survival rate was 47.2% in the ipilimumab group compared with 19.7% in the nonipilimumab group. The DS-GPA score was the most significant predictor of overall survival, and ipilimumab therapy was also independently associated with an improvement in the hazard for death (p = 0.03).
CONCLUSIONS:
The survival of patients with melanoma brain metastases managed with ipilimumab and definitive radiosurgery can exceed the commonly anticipated 4-6 months. Using ipilimumab in a supportive treatment paradigm of radiosurgery for brain oligometastases was associated with an increased median survival from 4.9 to 21.3 months, with a 2-year survival rate of 19.7% versus 47.2%. This association between ipilimumab and prolonged survival remains significant even after adjustment for performance status without an increased need for salvage WBRT.

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SteveT's picture
Replies 14
Last reply 4/5/2013 - 3:46pm

Hello,

Just got back home from Chapel Hill after a WLE and neck dissection. Post-op pathology reports showed some activity atop my head at the primary tumor site (pushing me to 3c) and no sign of spreading beyond 3 lymph nodes (out of 21 removed) in my neck. I have a follow up on Tuesday when I will also meet with a radiologist.

Apart from some stiffness, I feel great. I just got back from a long walk to the grocery store. 

How necesary is radiation? The docs want it and they haven't failed me. What is the liklihood that all the cancer was removed? Can someone point me at a study showing definitive benefits of radiation in my circumstances? How much fatigue is involved? Side effects? Has anyone opted out of all post-op treatment in favor of watch and wait and diet and exercise? Has anyone regretted getting radiation?

Thanks for all the support while I was in the hospital.  Steve

Make today count

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ljhncj12345's picture
Replies 2
Last reply 4/5/2013 - 1:03pm
Replies by: kylez, G-Samsa

Can anyone answer question I have about Ipi and LFT?  Larry had 2 infusions and was supposed to have third today. Cancer center called and said lft was not where they wanted it to be. Doctor is out of town so cannot talk to him until next week. I got a copy of lab work and ALT was465 AST was 318 every thing else was normal range. They are redoing labwork next Tuesday.

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Hi Tim,

I posted around 5 posts down the board about the FDA announcing its decision on June 3 about the two GSK Drugs--BRAF Inhibitor and MEK.

CAN YOU PLEASE READ THE POST AND MAKE ANY CORRECTIONS/COMMENTS YOU MIGHT HAVE?

Many thanks & have a great weekend,

Karen

Don't Stop Believing

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swissfarm7's picture
Replies 10
Last reply 4/4/2013 - 7:52pm

Next month the Melanoma Research Foundation and Seattle Cancer Care Alliance are presenting a melanoma symposium.  It's a free educational event.  Have you ever attended something like this?  Would you, if given the opportunity?  More to the point, what does it say about my "new" life that the thought of going to a melanoma seminar lights my fire? ;-D

Cheers,

Colleen

Keep on keeping on.

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Gene_S's picture
Replies 3
Last reply 4/4/2013 - 7:20pm
Replies by: Phil S, Anonymous

The purpose of this thread was not to upset any readers here. The real purpose was to educate you that MD Anderson is a business. The CEO has put demands on employees to generate more income! In order to generate more income are they giving you more tests than are necessary? Keeping you in the hospital for extra days. Unneeded medication that is not to your benefit?

I am quite sure that the people that you deal with, the doctors and staff are outstanding and are trying to do the most they can to help cure your melanoma.   Is this the beginning of "Profits over People?

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

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