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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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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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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dearfoam's picture
Replies 6
Last reply 9/26/2011 - 4:53pm
Replies by: dearfoam, Anonymous, Charlie S

Went in to find out if dad's tumors tested positive so he could try Zelboraf, and after 3 weeks of waiting, they told us the tissue sample was insufficient. Doc thought there might be a chance we could get some Zelboraf and see if it does in fact have an effect, thereby confirming without another biopsy. I doubt Roche will do that for us since it would have to be through their patient assistance program.

So in the meantime dad will continue Temodar, which is only slightly effective - 2/ 20 or so tumors shranks some (brain), while 2 of 2o grew (on spleen and colon).

Dr thinks we will probably have to biopsy a brain tumor. All I think about is how the original biopsy in April landed him in the hospital for over a week witha collapsed lung. Ugh. Don't even want to know what can happen to the brain.

Wait, wait, wait - it's all I seem to do.

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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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mom3girlsFL's picture
Replies 3
Last reply 9/23/2011 - 8:43pm
Replies by: Lauri England, TracyLee, Anonymous

Please know this "rant" is not intended to offend anyone.  I ask that you read with understanding and not judgement.

I am stage IIIC, almost one year NED.  Radical groin dissection with lymph node involvement, surgeries Sept 2010.  Clear PET November 2010, clear CT abdomen/pelvis March 2011.

Here are my feelings for today:

I am waiting for the phone to ring...or not.  I had a PET Monday morning and am awaiting the news.  I have never been more anxious over a scan than this last one.  Why?  I don't know.  Perhaps because I cannot explain the pains I've been feeling in my leg lately.  Or maybe I am afraid the aches and pains are due to mel.  Could it be there is more meaning behind the regular, almost daily, headaches I've been experiencing or is it stress?

In the past, the "no news is good news" has been the routine so I feel pretty good about not hearing from my onc so far.  I have always had the "bad news" immediately following scans.

So, am I driving myself crazy over the aches and pains in my leg?  How bout the headaches?  And when my scan comes back "clear" do I now label myself "The Hypochondriac NED"?  I don't want to sound rude, and I have always considered myself a strong person....but, THIS IS DRIVING ME CRAZY!!!!  My leg DOES hurt, the aches ARE real.  I HAVE been getting headaches, almost daily.  This is true, I'm not making this up - that's what I tell myself.  But what if it is not mel related, what the heck???  Ugh...whatever.

I guess all I know for sure is if the scan is bad, I will do whatever I need to do.  If the scan is clear I need some serious counseling.

Laurie

Do not fear tomorrow, God is already there.

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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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justlittleoleme's picture
Replies 6
Last reply 9/28/2011 - 9:18am
Replies by: justlittleoleme, Anonymous, lhaley, mimi0201, nickmac56

My husband's surgery is Friday.  I have asked them to test the tumor for BRAF anything else we need to request?

We visited with a melanoma oncologist Monday who gave us three options for adjuvant treatment.

1) radiation 2) interferon 3) clinical trial with a)interferon b)Yervoy-depending on which group he would get into.

We will know more once the surgery is completed and the pathology results are back.

I am planning on attending the symposium in Chicago on 10/1.  I am hoping he is feeling better so I can go.  I think there is a lot I may learn.

 

Thank you Tim for this website!  I have learned so much and I feel my knowledge of melanoma is still in its infancy.  I really don't WANT to know more, but I NEED to know more.  I want my husband around for a long time!

 

barb

We don't know how strong we are until being strong is the only choice we have.

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The followig is provided by Nicole's friend Donna:
 
"Nicole comes from country Nsw and her family may not post an obituary in the major daily.  I have begun searching the local newspapers to see if they have placed an obituary in one of them.
 
The service is on Australian Friday 23 September, which I believe will occur on your Thursday.  Just to ensure I have that correct it is currently Wednesday 21 September 7:39pm here.
 
Friday 23 September 2011
10 am
Collier Trenerry
202 Yambil Street,
Griffith NSW 2680, Australia
 
Some one posted the following on Nicole’s facebook page
For those of you who can't go to Nic's service, like me, I thought you might like to know that I called the funeral home and Nic's family is accepting both flowers and also donations to Melanoma Research.
http://www.melanomaresearch.com.au/ and http://www.melanoma.org.au/ are 2 possible options.

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

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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.

 
Blank
Blank

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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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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plaza's picture
Replies 4
Last reply 9/23/2011 - 11:48am

Has anyone had success using ipilimumab Yervoy, or what did you use that was successful?

My mom was on a clinical trial and was working well until this past month. She had to be off of the the drugs for three weeks for a surgery. Her scans came back that the tumor on her liver had grown but it is still smaller than it's original size. The ones on her lungs had disappeared and now they are back. Since they grew back she was kicked off the clinical trial by the drug manufacturer, which doesn't make much sense since she was having success on the medication. Now they are telling her about this recently approved drug by the FDA and was just wondering if anyone has had success. Thanks for reading and responses would be appreciated.

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Lisa13's picture
Replies 4
Last reply 9/21/2011 - 12:37am

On Thursday, I have my 3rd infusion of Yervoy. Other than a faint rash on my chest, itchy skin and some abdominal cramping, I havn't had any symptoms.  When I see my Dr. tomorrow, I plan to ask what my absolute lymphcyte count is so I can see if my immune system is responding. That being said, do you have to have symptoms in order for this to work? I read on another website that the stronger the symptoms on yervoy, the better the response.  Is this true??  Are there any complete responders who had little to no symptoms and it worked?  I hate not knowing what's going on inside my body, but I'm hanging in there and hoping for the best.

Lisa

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

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ValinMtl's picture
Replies 12
Last reply 9/23/2011 - 11:45am

Hello everybody, I'm back.  I was going to post last night but sadly saw the news about NicOz and decided to wait.  May God be with her and watch over her dear young daughter.

I started Aug 18-22

cytoxan (chemo) IV for 1 hour on day -7 and day -6

   developed arrhythmia...need to see cardiologist now...hope it has kicked back in place

  You will be given Mesna through IV. Mesna protects the bladder from irritation.

fluderabine (chemo) not as strong day-6, day-5 and day -4, day-3

TBI (total body irradiation -if on that arm) day-3, day-2, day -1

   I have definitely had achy bones and still do.

TIL cells - day 0

IL-2 (Aldesleukin) - day-0, day +1,  day+2, day +3, day+4

       you received IL-2 every 15 minutes until your body can't take it...I couldn't after two treatments, kidneys were giving out.

When I did return to Montreal on September 10, I was back in the hospital with slight hullacinations.  These were straightened out...too many cross over on drugs? Back as home, I am slowly gaining my strenghth, I couldn't keep anything down for the longest time except except gatorade.  But I travel back next week for a review and hopeul it will show regression, let's pray.  I'll keep you posted.  As Warren says, one step at a time.  I'm still very sore and can't write that well but maybe in a month or so.  Soon as I hear results I'll let you know.  Val xx

Live Laugh Love Nothing is worth more than this day!

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

/

 

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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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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