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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kris herrington's picture
Replies 15
Last reply 8/27/2011 - 11:31pm

Hi,

 

I am stage 4 and was told to go to the NCI for thier treatment with Steven Rosenberg. Has anyone been thru this? What was it like and did you have sucess?

 

Thanks!

Kris

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JerryfromFauq's picture
Replies 3
Last reply 8/25/2011 - 9:26am
Replies by: Terra, nickmac56, MariaH
I'm me, not a statistic. Praying to not be one for years yet.

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heg50heg's picture
Replies 2
Last reply 8/25/2011 - 5:10pm
Replies by: AlanM, JerryfromFauq

After 2 and one half months of interferon I had to stop treatments due to getting pancreatitus . Would interferon cause this. My doctor does not want me to start it back up after getting so sick. Will that amount of interferon do me any good or will I be more acceptible to advancing to stage 4 melanoma since i did not complete it.

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glewis923's picture
Replies 9
Last reply 8/26/2011 - 8:02am

After i completed 7 SRS (Novalis TS) and WBR  4 mths. ago, then Yervoy i finished in mid-May;  I'M ALIVE !    still no telling which brain tumors are completely dead or what, but no "meaningful" new ones.  My speech sounds like Donald Duck - Drs. don't really know why except possible brain stem pressure or something.......BUT....my lung tumors have all shrunk a tad and definately seem to be stable- as brain too.

Next week I start the Roche Vermufumib (now whatever it's called-raf)  still PLX 4032.  I cannot praise my local small-town oncologist enough for helping me weed through things- ie.:  the "big" know-it-all hospitals/ Drs. who know /control all but tell you very little at times, but  control your destiny!   

Anyway, Very HOPEFUL and grateful that I've been given a 3rd or 4th chance (lost count).   Wishing ALL of you the best.

Love from Grady Lewis Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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jax2007gxp's picture
Replies 15
Last reply 9/5/2011 - 10:20pm
Replies by: jax2007gxp, JerryfromFauq, Anonymous, mcanova, lhaley, flynn, awg

Hello all,

I saw the surgeon today.  Assuming the insurance company approves the PET (I was told that insurance companies are making this difficult lately) and it is clear, the surgery is scheduled for 9/9.  He is planning to remove the superficial nodes from my right groin and will only take the deep ones if it makes sense to do so.  I know the more missing nodes means greater risk of lymphedema.  This really isn't what I'm wondering about though.  He said that he would remove a vein from the area and then detach/reattach a muscle in order to protect the area where the nodes were removed.  Has anyone experienced this movement of the muscle or removal of a vein?  I had not read about it anywhere and I'm wondering what to expect afterward.

As always...thank you so much for any feedback you may have for me.

Jacki

 

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csouthgate's picture
Replies 5
Last reply 8/26/2011 - 1:14am
Replies by: msue5, JerryfromFauq, Anonymous

Went to see my dermatologist last friday regarding a suspicious mole on sole of my left foot that has been changing shape. She suspects it is early stage acral melanoma. I have a biopsy scheduled for September 6th, does anyone know of a fantastic MELANOMA specialist in the Washignton DC area, if this is melanoma i want to go to a specialist instead of a dermatologist. Thanks!

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Lisa13's picture
Replies 5
Last reply 8/25/2011 - 9:20am

As of this Friday, it will be 3 weeks since my first ipi treatment.  Today I have noticed a rash across my upper chest as well as on my face (across cheek bones). My face is very warm and looks a bit sunburnt. My stomach has also been gurgling, but nothing other than that.  Hopefully this is all a good sign. Blood work and next ipi treatment next week.

Lisa - Stage 4 - lung mets

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

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I didn't see mention of this on the board, and the information was only recently added to clinicaltrials.gov, so I thought I would put this out there for anyone who might be interested...

Roche is teaming up with Bristol-Myers Squibb in testing Yervoy AND Zelboraf to see if they are safe to be taken in conjunction with each other as well as to test if effectiveness and response time will improve when used as a combination.

I thought this a highly interesting trial and wished we had had the time to wait for this one to open for Don to get on it, but we were told that even though the trial is slated to open in September, it would probably be November before testing sites would be ready to begin recruiting.

The first three testing sites are going to be located in Boston, Los Angeles, and New York. I know that MGH will be one of the sites in Boston running this test.

Here is the link for anyone interested in reading more about it: http://clinicaltrials.gov/ct2/show/NCT01400451?term=melanoma+boston&recr...

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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shellebrownies's picture
Replies 8
Last reply 8/27/2011 - 1:28pm

By the grace of God, Roche has given Don approval to join the expanded access vemurafenib trial based on his earlier positive BRAF result. (The test conducted by Roche on the tissue sample we provided came back negative, even though it was from the same sample that had tested postive on GSK's test in May).

He started the medication today and it was none too soon; he has had increasing back pain in the last week that we are still in the process of controlling.

We still do not know the outcome of what will happen when he is transitioned off the trial once the drug becomes commercially available, but for now, we are happy to have access to the drug at all.

Thank you, everyone, who has kept us in their thoughts and prayers; I cannot tell you how much that has meant to us!

Michelle, wife of Don

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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boot2aboot's picture
Replies 10
Last reply 9/4/2011 - 4:51pm

 

Peptides and Montanide ISA 51 VG with Escalating Doses of anti-PD-1 Antibody BMS-936558 for Patients with Unresectable Stages III/IV Melanoma....it was recommended to me but i still can;'t figure out my HLA type...i got test results back and can't make any sense out of it...anyway, please let me know if anyone on this board is on this study and how they are doing...thank you

boots

 

don't back up, don't back down

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i have known a few cases of rudeness and ill treatment on the BB.  This is not the norm.  This group of people is the most undertnding and compassionate group that I have ever met.   We made it to Colorado tuesday with only one day of tire trouble and then  Laura Downs, whose husband died from melanoma in May 2010 came over to visit us.  She is a wonderful compassionate young lady with a delightful 2 year old daughter that is studyig to be an Oncological Nurse to help in the fight against what melanoma is doing to so many of our group.  She was much appreciated by my wife last year when I was in the Denver and Springs hospitals.  She was very helpful and gracious in spite of having just lost her husband and the father that loved his baby girl so much.

   We received so many great messages and help from you people.  They were read to me, even though I was unconcious then. (Acutally I have just been findiing more of the messages from then.)  Tanya did a great job of saving everything for me as well as keeping y'all informed of my status.  And people from Colorado visited me in the hospitals out here.  I had never met these people in person before, just thru the MPIP BB and chat..    As I discussed with Laura, It is amazing the closeness that we can develop with each other going through this struggle.  And most amaziing is the wonderful people that we encounter on this journal.

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

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TracyLee's picture
Replies 9
Last reply 8/25/2011 - 9:28am

Hi y'all,

Well, I am definitely a BRAF responder, and we all strongly suspect a delayed ipi/Yervoy responder!

Nasty/ugly but tolerable rash from below my neck, down my entire body. Began last week, so virulent that my local onc in conjunction with U of Penn, took me off of BRAF for a day or so.

Then, last night...blurry vision in my right eye. This seems more of a ipi side effect than BRAF. Called local onc, and U of Penn. Hauled to ER, assessed, seen by eye doctor today. It is slowly resolving.

My eyesight is terrible anyway (I'm an 11 diopter correction!), so I don't mess around with my eyesight.

The eye doctor did NOT feel it was a side effect. Personally, I do, particularly in conjunction with the rash.

Thoughts? Anyone else have sudden blurry vision, which resolved fairly quickly?

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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JennerFromIowa's picture
Replies 11
Last reply 8/24/2011 - 7:35pm

Hi,

 

Haven't been on here for quite awhile.  I get on once in awhile to see how people are doing but am mostly just trying to "live life".  Next month will be my 9 year anniversary with good old NED.  (I had a 1.53 mm, ulcerated melanoma, mitotic index of at least 17 mitoses per square mm., lymphocytic host response of +2 on left hip)  I just had my onc appointment in June and he says he doesn't need to see me anymore....that it is highly unlikely that it will come back after this long.  As much as I believe that is probably true, I don't want to risk anything either.  I have been followed with chest xrays and lab work once a year with a different onc that doesn't come to my area anymore so switched oncs.  Not sure that was a great idea but this guy was supposed to have more experience with melanoma than the one before.  I do still see the dermatologist once a year too.  What kind of follow up are other Stage IIA people out there receiving?

 

Thanks so much for all you guys do!

 

JennerFromIowa

Stage IIA 

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Jamietk's picture
Replies 4
Last reply 8/23/2011 - 5:27pm
Replies by: jackiewin, Jamietk, jyc

For the first time in 6 years, I am going to fly to MDA instead of drive. I'm on annual check up of chest x-ray and blood work only. My Dr. appt is at noon on a Monday in October. We will have a rental car to return at the airport. I'd like to take the 5:30 flight home. Do you think that's pushing it? There is also a 6:30 and 7:00 flight home but they cost more and get in later. I know the hospital has travel services with Continental and they waive the rescheduling fee if you have to change your flight. But they are twice the price of Southwest so I'd like to book through them. I will be my Doctor's first appointment of the day so he shouldn't be behind, especially since my only tests are xray and lab. Do you think 5 1/2 hours is enough time between Dr. appt and flight time, assuming there is nothing found on x-ray and bloodwork and nothing to really discuss further? We're usually in and out pretty quick but I am not familiar with the Houston airport and how long it takes to get there from the hospital, return the car, and get through security. Thanks for any opinions.

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Hey everyone just updating what's new.  I had an ultrasound of my lymph nodes in both groins where some of the nodes contained a hypoechoic lesion concerning for melanoma metastatic deposit.  Since the surgical oncologist can actually see this within the nodes he's set me up for an ultrasound guided biopsy this thur at VAndy.  Has anyone else had an enlarged lymph node or nodes that contained a "lesion" in the node that was visible by ultrasound?  Crazy thing is I had a clean PET scan done 2 mo ago but these hypoechoic areas in the nodes are just now right at 1cm in size and were not there 2 mo ago.  Thanks so much for your support and knowlege on this disease.

 

Much love,

Alicia STage 3a w/ 3 primaries

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