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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natalieruth's picture
Replies 4
Last reply 9/23/2011 - 7:39am
Replies by: Anonymous, DebbieH, justlittleoleme

I was diagnosed with melanoma stage 3 in 2000.  At that time my MD Anderson doctor told me I would have to be monitored the rest of my life.  We have recently moved, and I have a new doctor (an internist who consulted oncologists on staff) who said the CT scan is no longer necessary and blood tests are all he plans on doing.  This scares me.  I have been cancer-free for 14 years.  Are any of you still being tested this long after the initial diagnosis?

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Jessmoon's picture
Replies 8
Last reply 9/23/2011 - 7:03am
Replies by: Anonymous, JoshF, Jessmoon, triciad, bblapril, Tim--MRF, eaca

My 35 year old husband was just diagnosed with metastatic melanoma with normal PET scan and sentinal node biopsy.  Yesterday we were presented with treatment options.  1.  Interferon or 2.  Enrolling in a study in which he would receive Interferon or Yervoy.  I am so concerned about the side effects of both medications.  Can anyone share their experiences with either medication? 

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Terra's picture
Replies 14
Last reply 9/23/2011 - 5:08am

I feel ok about Derek's plan, but am very fearful about how much time he has left.  Yervoy did not work.  We went to Washington for TIL last week and they need Derek to wait 3 weeks to get the steriods out of his system (from his asthma inhalers) and to make sure the radiation he had after ipi works to improve his breathing (because of a tumour) - then they will rescan and if it looks good go ahead with the surgery.  No way to know if the radiation is working but his breathing has definitely improved.  The onc down there felt Derek had a moderate level of disease in his liver and wasn't concerned if grew by 50 or 100% for this trial.  Also, he is Braf negative and doesn't particularly see IL-2 or carbotaxol as an option - he feels this is his last chance.

 

My question is really how to support someone through all of this.  We have been at this since he was diagnosed stage 3 10 years ago, just before we started dating and he is tired of it all I know and says he has accepted what will happen, but is hoping this trt does give more time.  We have 3 girls 4 and under so it is pretty busy around here.  I feel like I am wasting time doing the routine things like cleaning the house, etc. He says he is ok with staying close to home and the little things we do - he wants to spend time with us, but I just feel like there is more I should be doing for him - I can't even say for sure what I want to do for him - not necessarily send him on a trip or something but what can I do to make things more meaningful for the time he may have left?  Some days he is down in his office, the kids are at daycare, and I am on mat leave so am home doing laundry, making dinner, and it seems that there is so much more I could be doing for him or doing for us but I don't know what that is.   

Terra

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JerryfromFauq's picture
Replies 7
Last reply 9/22/2011 - 10:35pm

I have been tryiing to get in contact with Jim every since I reached Colorado.  i keep getting the message that the phone number dialed is not a working number.  Tonight I searched James Chase and Denver and found the following:

http://www.legacy.com/obituaries/denverpost/obituary.aspx?n=james-donald...

In it they requested donations to the MRF.

   Jim is one of the Colorado MPIP/MRF members that came out of his way to visit me in the Hospital after my accident last year.  He was a good man and tried to fight this fight and help others.

 
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Obituary or Memoriam
 
JAMES DONALD CHASE
 

Jim, 58, passed away July 3, 2011. Beloved husband of Jan; father of Christina Jane and Kathryn Mabis; son of Jane Chase; and brother of Barbara (James) Rybacki and J. Givin (Nancy) Chase. He was preceded in death by his father, A. Mabis Chase. Jim graduated from The Hill School in Pottstown, PA as did his father and his brother. His daughter, Christina, will graduate from The Hill School in 2012. He received his BS & MBA in business from the University of Denver, and a Masters in Accounting from CU Denver. He was an avid golfer and skier, but his greatest love was his family. Jim dedicated a majority of his time to raising his girls. They are fortunate that he was able to be involved in their schools and their sports. He particularly enjoyed serving as the Lacrosse team dad for Kathryn for the last five years. A Celebration of Life for Jim will be held Friday, July 8, 10:00 am at St. John's Lutheran Church, 700 S Franklin St, Denver. In lieu of flowers, donations may be made to The Hill School, www.thehill.org, The Denver Botanic Gardens, www.botanicgardens.org, or the Melanoma Research Foundation, www.melanoma.org. Please share condolences at HoranCares.com.

Published in Denver Post on July 6, 2011
 
 

Rest in peace, Jim, you were a good man.

JerryfromFauq

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

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AlanM's picture
Replies 1
Last reply 9/22/2011 - 10:17pm
Replies by: Jim M.

I am one week away from 3rd infusion of ipi and just had to start 20mg/day prednisone to control gastro issues. The nurse told me that it generally takes a few weeks for them to take affect and  to taper off the drug. Will being on the steroid cause me to miss my next infusion?  I have had shrinkage in the brain met that I have and I want to keep that moving forward!

Alan

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nickmac56's picture
Replies 8
Last reply 9/22/2011 - 6:18pm

My wife can't buy a break. After finishing up the 15 radiation treatments for her spinal cord mets (using the new tomo therapy radiation treatment), she had a brain MRI last Friday, which was a followup to her gamma knife treatment of the two brain tumors of 6 weeks ago. The good news, one of those tumors is gone, and the other is reduced in volume by 41%. The oncology radiologist made the claim that this means her melanoma is very radiation sensitive and bodes well for the spinal tumors as well as for any new tumors. The bad news is she has two new brain tumors - still pretty small (about 1/3" or 9mm in size in all directions). The locations are completely random - there is no clustering occurring.

So a week from this Thursday she will have the gamma kife treatment again. We opted for that over the Cyberknife because it is fewer treatments (one versus five), it's more precise, she's tough and can take the whole cage installation on the head process, it won't affect her hair (cyberknife causes hair loss for her, gamma waves do not), and in the event another tumor pops up in the next ten days, it can be added to the treatment protocol because they do a high resolution MRI the day of the treatment and it's easy to add that to the computer program.

So for her right now, given the lack of availability of any systemic treatment or cure, it is scan and zap. She remains on the steroids and antiseizure meds too. She is still on Temodar, but given the emergence of these new brain tumors I wonder if that continues to make sense.

So far, the zapping seems to be effective. I've read a lot about the radiation resistance of melanoma, and am of course worried that at some point the radiation is no longer effective. Anybody else have experience with radiation initially being effective but then losing its potency? 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/22/2011 - 3:24pm
Replies by: Harry in Fair Oaks

Hi,

 

I am a newbie and need your help. I just turned Stage 4 and my doctor is recommending GSK Braf/MEK combo trial. I have have subq on leg, chest and mets on both lungs.

I sincerely would appreciate any feedback / experience with the BRAF & Mek combination drug.

I am very interested in knowing in the following:

1. how long it took to see tumor shrinkage ?

2. how long has the combo drugs been working  OR Stopped working?

3. anyone get rid of ALL there tumors with this combo drug and remained NED??

4.  what side effects have you experienced

 

Thank you so much for taking the time to reply to my questions. I wish you all a status of NED.

Nancy

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Lisa13's picture
Replies 9
Last reply 9/22/2011 - 10:36am

Based on my bloodwork today, my LDH levels have gone from 245 to 187. This is good news, but my oncologist said it's a big jump and maybe perhaps it's nothing to get excited about as LD can be affected by many different events. I told him that I was going to believe it was the fact that I had tumours missing in my lungs. :)  Anyway, my Absolute Lymphocyte count when I first started was 1.85, now it's 2.28 which he said is a good trend.  I really don't know what these numbers means exactly, but the fact my ALC is higher and my LD is lower is good news. As my Dr. also pointed out, my bloodwork doesn't show any progression "it's beautiful". 

I havn't been having many symptoms, but my Dr. confirmed that symptoms doesn't necessarily mean it's not working and that many people have been responding without any symptoms whatsoever in his trial. They are seeing more itching than rashes and that's the only thing I've had so far.  We also discussed IL-2 after ipi (if this doesn't work) and he mentioned that the Dr. running the IL-2 program in Buffalo suggested these combo's of IL-2 after ipi were showing good results.

ipi #3 tomorrow and I'm going to keep hoping that I respond to this drug!

Lisa

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

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NicoleinVA's picture
Replies 5
Last reply 9/21/2011 - 10:15pm

Hello,

I had a WLE and SLNB on 8/11; thankfully the SLNB was clear and at the beginning everything healed very well.  The WLE was done on my lower left outer calf.  They were able to close w/o skin graft and first three weeks all did well.

The incision on my leg re-opened in the middle two weeks ago and I'm told it will have to heal from the inside out.  I just finished up a 2 week dose of Keflex for minor infection and keep in wrapped.  I clean w/soap & water 2-3 times/day and first was using thick coat of bacatracin and now have been given saline solution.  I clean, soak gauze pad w/solution and re-wrap, doing this 2 -3 times/day.

Has anyone experienced anything like this and if so, do you have any advice?  I go back to derm in 2 weeks for another skin check and have to have at least 2 moles removed.  I'm hoping to recover from this surgery before I start w/more stiches.

Thanks for any advice you can offer. 

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MariaH's picture
Replies 2
Last reply 9/21/2011 - 9:44pm
Replies by: MariaH, JerryfromFauq

I have a question to others who have done IL-2:  Has anybody else had tunnel vision as a side effect?  One week after Dave completed his first week of IL-2 he had an episode of tunnel vision that lasted about 20 minutes.  He checked in the following Monday for his second week of IL-2 and reported this to his onc, who ordered a brain MRI.  This came back clear.  His last dose was on Thursday, and Sunday it started again and has been consistent.  He contacted his onc, who said it could be from brain swelling.  Has anybody else had this side effect?

Blessings to all the mel warriors out there,

Maria

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vickykay's picture
Replies 11
Last reply 9/21/2011 - 7:16pm

well, no nausea, but I have chills, headache and very much fatigue. I wanted to know if everyone who has interferon has to be stuck with a new iv everyday?   I am afraid I will run out of good veins.

 

 

 

 

 

 

 

 

 

 

 

 

 

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Stage 3b - will start interferon Sep. 19th. Started interferon Oct.2011. Received three weeks everyday with very bad side effects. Stop high dose everyday and started shots. Had to stop after one injection, vomiting blood. Had Ct, came back clean.

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URGENT – TODAY – Person with history of tanning needed for D.C. Interview Opportunity 

For today (Wed, Sep 21), a Washington D.C. area TV station would like to interview a local person who has had melanoma and can speak to the dangers of tanning in relation to a new DC regulation that would require minors to get permission from their parents to use a tanning bed.  If you’re available between 4:30 p.m. and 8 p.m. today, please contact Jenni Glenn at 202-591-4013 or jenni@jpa.com.  We appreciate your help educating the public about melanoma and the dangers of tanning! 

Thank you!

Shelby - MRF

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mwb1010's picture
Replies 10
Last reply 9/21/2011 - 1:14pm

hello....can anyone help me...I have been diagnosed with
melanoma and have had a wide excision and sentinel node biopsy. the
results of the snb came back with nothing present in the lymph
nodes...The depth of mine was 1.02mm but was all taken out with the wide excision. Does anyone know if I have anything to continue to worry about....I know that melanoma can come back anytime but I am still very nervous and my surgery was back in December 2010.  I know that there are people that are in a worse condition as I am but am I stressing myself out? Thank you in advance..

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eaca's picture
Replies 3
Last reply 9/21/2011 - 12:35pm
Replies by: eaca, JerryfromFauq, King

Since I haven't found a lot of information on others using pegylated Interferon on this board, I thought I would just post my experience with starting it on Friday, to share with others.  I'm stage IIb and on a clinical trial combining peg-intron with a peptide vaccine. I give myself Peg-intron injections once a week and the vaccine is given by the Dr once every three weeks, all of it lasting 6 months.  So my first injections were on Friday afternoon and I experienced what I gather are the typical interferon reactions of severe chills, aches, headache and fever starting about 5 hours after the injections.  It was a pretty miserable night, as I kept waking up to more aches and fever or to go to the toilet because I was drinking gallons of water.  I was taking Tylenol and as my Dr said to steer away from Ibuprofen, I was concerned about reaching the dosage limits. The effects were so bad that I really felt I needed more Tylenol after 4 hours, but then if I kept up that pace I would have run out of options before 24h had gone by, so I slowed down a little.  The effects peaked probably around 10 hours after the injections, but I stayed pretty miserable most of the day on Saturday until about 24h after the initial shots.  I had some slight nausious feelings, but by eating small amounts I was able to keep that under control.  Then I finally managed to get myself up and showered and dressed to go see some friends in the evening.  The second night was much better already and the second day has been very manageable, with just a few remaining aches and vague fuzziness in the head.  So here's hoping the coming weeks don't get any worse.  I'm going to ask my Dr about other alternatives to Tylenol in case I need more of something on the first night.  Otherwise, I'm determined I'm going to do this!

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/21/2011 - 11:43am
Replies by: Tim--MRF, Anonymous, FormerCaregiver

He is in south korea, suffering with Melanoma.

I'm wondering if he can get Zelboraf.

He is going to find out if he can get as he stay in South korea, otherwise he is going to travel to the states.

Is there anyone who knows how to get Zelboraf from overseas.

Thank you so much for reading mine and your comments in advance.

Peter..

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