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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Rendergirl's picture
Replies 13
Last reply 7/2/2011 - 10:53pm

I have pre-op tomorrow and Tuesday I have my surgery. I'm having a tumo removed from inside my leg in back of the knee. They are going to use a nerve block, injecting me in the lower back, which I'm really scared about. I'd rather be put to sleep. They have to make sure the Melanoma hasn't spread which is why they're removing the tumor. I'm really nervous about the surgery and the pathology. I could use any good wishes and thoughts right now.... thanks.

 

Becca

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Hello again Friends,

Here is a brief update on my stage IV melanoma journey. You can read more details in my profile which I just updated. I recently completed the second pass of the 10 week Ipilimumab (now Yervoy) clinical trial, and unfortunately the chest wall tumor continues to grow. Maybe in hindsight that's good news as a prerequsite to enter the new t-cell targeted therapy clinical trials now in progress at the National Institute of Health in Maryland require a minimum of 2 cm. (mine is about 3 cm.). Dr. Steven Rosenberg is heading these trials, and my oncologist has submitted me as a candidate. I am waiting to see if I will be accepted into the program. You can learn more about these clinical trials by viewing the profile of Dr. Rosenberg at NIH. I do not know which trial I would participate in as there are 10 listed, but I am hopeful I qualify for at least one of them.

If you have recently participated in one of these trials or are now actively in these trials, I would be interested in hearing about your experience either on the board or via email. I have heard that patients can expect to see success rates of 50-80% vs. the 20% or less of other therapies I have tried and failed. So I remain optimistic and confident that this time the beast can be broken - time will tell. I will post again when I get the much anticipated call from NIH for acceptance.

Thanks and I wish all you warriors and care givers a great day,

Bruce in New Hampshire, USA

Stage 1 - Oct. 2000; Stage 3B - Sept. 2003; Stage 4 - Dec. 2008

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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Anonymous's picture
Anonymous
Replies 0

Hi All,

Does anyone know that if your interested in a clinical trial that is far away from you do they help pay for expenses?

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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MariaH's picture
Replies 2
Last reply 7/2/2011 - 2:41pm

Does anybody have any experience/suggestions for a good surgeon in the New York, Pennsylvania, area?  We want Dave to get a second opinion on his enlarged lymph nodes (they are large and matted) - the surgeon at Roswell won't consider removing them.  We just want to make sure that this is the right call - and for those of you who have done second opinions, how do we go about doing it and what medical records do we need?  There are so many options out there today as opposed to when he was diagnosed in 2008 - and for that, I am very thankful!!

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newmanmark's picture
Replies 7
Last reply 7/2/2011 - 10:16am
Replies by: nicoli, DeniseK, King, JTA, Fen, lhaley, akls

Group,

I am still anxiously awaiting my CT scan on July 11th.  This wait has been awful.  I am unable to concentrate at work and have been distant with friends and family.  I'm sure a lot of you can relate.

I am concerned that the melanoma has returned to my liver.  I have been experiencing mild discomfort and light pain in my upper right abdomen area, just below my ribs.  The research I have done suggest that this could be the swelling of the liver due to the melanoma.  I am a stage 3C patient (8 nodes infected) so I am hovering awfully close to Stage 4.  I'm hoping that this is not the case but you never know.

Has anyone else out there had these abdominal issues only later to find out that its not melanoma.  Could this be a side effect of the 7 months of Interferon treatment? Any thoughts or words of encouragement?

Thanks

Mark 

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cheryl brodersen's picture
Replies 5
Last reply 7/2/2011 - 9:38am

My husband, Steve,  has had 3 treatments, a week break, and starts the next three treatments next week...and then the scan.

Anyone have any experiences with this combo? He has been pretty sick, but his doctor said that is to be expected after the 18 rounds of DTIC he went through last year (in 14 months). He was certainly never this ill and unable to do anything. The Neulasta seems to have kicked in and he's back to being up and around.

I would love to hear anything about the A/A treatment, good or bad.

Thanks,

Cheryl, wife of Steve, Stg. IV

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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jim Breitfeller's picture
Replies 3
Last reply 7/2/2011 - 4:24am

One of many immunotolerance mechanisms that immune system has developed to distinguish between self and non-self antigens is regulatory T cells or Tregs.

These cells are recently characterized specialized T-cell subsets that actively suppress a variety of immune responses. Researchers have broadly classified Tregs into natural and adaptive Tregs. Natural Tregs are CD4+CD25+ T-cells that originate in the thymus and play a significant role in immune homeostasis and protection against autoimmunity. Adaptive Tregs are non-regulatory CD4+ T-cells that have up-regulated CD25 expression during pathological and inflammatory conditions such as cancers and infections.

Although the principal immunosuppressive mechanism of Tregs remains elusive, several in vivo experimental models have indicated that Tregs secrete large amounts of immunosuppressants including IL-9, IL-10 and TGF-Beta; upon activation.

 

These lymphokines are capable of inhibiting activation of Th1, Th2 cells and CTLs required for cell-mediated immunity, inflammation and antibody production. Certain recent experimental data and results even indicate that IL-2-IL-2R signaling is vital for development, maintenance, survival, expansion and suppressive activity of Tregs. Increased expression of certain other characteristic markers including CTLA-4, glucocorticoid-inducible tumor necrosis factor receptor (GITR) and OX40 has been identified on Tregs whose function inside these cells is still not clear. The TCRs displayed on Tregs are capable of recognizing and interacting with any peptide-MHC class II ligand having certain range of avidity. But, the contribution of TCR signaling and role of TCR-ligand interactions towards regulatory T-cell development needs to be determined.

 

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stretch's picture
Replies 14
Last reply 7/1/2011 - 11:27pm

I AM 63 AND WAS DIAGNOSED WITH STAGE 1 MELANOMA - I HAD SURGERY EARLIER THIS MONTH AND ALL SHOULD BE OK (NEGATIVE MARGINS)

HOWEVER I AM TOTALLY STRESSED AND CONFUSED AS TO HOW TO GO ABOUT LIVING MY LIFE - IS IT OK TO BE IN THE SUN WITH UV PROTECTION CLOTHING OR AM I TO AVOID IT AT ALL COSTS?

MY HUSBAND AND I ARE ACTIVE PEOPLE WHO LOVE CANOEING, SWIMMING, ETC; WE HAVE A FAMILY REUNION IN JULY ON A LAKE IN NEW HAMPSHIRE AND I HAVE NO IDEA WHAT PRECAUTIONS ARE NEEDED (OTHER THAN THE UV CLOTHING AND LOTIONS)

I CALLED MY DERMATOLOGIST, WHO SAID I WAS NOT TO BE IN THE SUN AT ALL!!! THAT SEEMS CRAZY (IMPOSSIBLE!) AND I AM HOPING TO GET MORE CLARIFICATION BEFORE I RESORT TO LIVING MY LIFE IN A CAVE

THANK YOU ALL IN ADVANCE FOR ANY ADVICE/SUGGESTIONS/CLARITY YOU CAN PROVIDE!

 

CAROL

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JerryfromFauq's picture
Replies 11
Last reply 7/1/2011 - 10:08pm

On 6 June I  felt a tender lump back  of  my right nipple.  I had a CT and Oncologist visit alred scheduled for June 13th.  (How's that for timing?)  The lump showed on the CT and my Oncologist brought up my problem the next day at a Oncology team meeting .  My Melanooma Surgeon's nurse called me and set up an appointment for June 27th.I saw Dr Slingluff then and he agreed that he would remomve the tumor which in now about 1 inch across, as soon as he could find a open operating room on his schedule.  He had his operatimg schedule full up until the middle of August.  I'm not sure just what he did but his nurse emailed me (and another nurse phoned me) to say that he wou7ld operate on me on 6 July.  This is great because this allows my wife and I to be in Colorado again in mid/late August for the birth of Gramd kid # 15.  Thank You UVA!

   It was noted that If the melanoma has indeed gone from my rear endthru my left groin then thru my neck and to my right breast, that this would indeed be an unusual path for it to follow.  So here's hoping that it's not a cancerous growth in there!

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

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lhaley's picture
Replies 14
Last reply 7/1/2011 - 12:40pm

I'm stunned right now.  I had surgery 4 weeks ago tomorrow.  Started radiation along the ulner nerve on Monday. On Tuesday I actually saw a lump on my lower arm, about 4 inches below the surgery site. When I went into radiation I pointed it out to the radiologist. She was concerned but thought it could be a blood vessel.  I thought it got smaller the next day. 

Today I had an appointment with my local oncologist (happened to be scheduled appointment). The radiologist had called her. She thinks it's melanoma. Said it felt exactly like the  tumor that she felt on me last summer.  Has a call  into my mel specialist for the next step. 

It makes sense because all of a sudden the nerves were really bothering me again on that arm. I was hoping it was from using it to much and the positioning during radiation.   What doesn't make sense is that the first node was closer to the arm pit, the second one was closer to the elbow, this one if it is mel is on the other side of the elbow.  Doesn't disease traditionally follow the pathway to the heart?  It's going in the wrong direction.

A break of more than 4 weeks would sure have been appreciated!

Linda

5 year cancerversary of stage IV is July 6th.  Would like it to be while I'm NED!!

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shellebrownies's picture
Replies 7
Last reply 7/1/2011 - 12:16pm

Don goes in tomorrow morning for his next Chemo treatment. Hoping and praying for continued success!

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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newmanmark's picture
Replies 9
Last reply 7/1/2011 - 11:39am

Hello,

It has been a long time since I have posted here.  I am a 31 year old Stage 3C with 8 nodes infected.  I had a complete lymph node dissection under both arms, 5 weeks of radiation and 7 months of Interferon.  The Interferon sent me into a manic state and I had to withdraw.  I have been off of Interferon since October 2010 and so far all scans have come back clear.  While going through radiation my wife and I had our first child.  This had to be the most difficult time of my life.

The reason I write is because for the past 2 weeks I have had some discomfort in my abdomen area especially in the upper right portion (under my ribs).  I am concerned that the melanoma may have come back in my liver.  My oncologist has ordered a CT scan to rule it out.  However the scan isn't until July 11th.  The wait is awful and my mind continually races.

It would be good to hear from other Stage 3 patients (especially 3C) who are doing well long after their diagnosis.  I am constantly reading horror stories and it drags me down mentally.  Is there anyone out there with a good story of reamining NED with several nodes infected?

Thanks
Mark

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gabsound's picture
Replies 2
Last reply 7/1/2011 - 3:45am
Replies by: JerryfromFauq, lhaley

Well, I will finally have surgery tomorrow to have the lumps in my leg removed. It seems like everything always takes forever. Hopefully will get results back for when I see surgeon the following week. Oncologist appt to follow the next day.

I've told both docs that I want the tumor tested if it's melanoma for genetics. They said they will, if its malignant. Of course that would mean another 1-2 weeks to get approval from insurance company and then I'm guessing another 3 weeks or so to get results back. Anybody know how long that takes? All this sitting and waiting seems endless. Hopefully no bad repercussions to the waiting if this does turn out to be a recurrance.

Good news for my sister. Breast cancer in only one breast.Pet scan negative except for activity in the one breast. Sentinel node results due any day and she will start chemo on  07/06. They think the tumor should respond well to chemo so it gets so small she will only need a lumpectomy. Yeah!

Hoping for a speedy recovery. Best wishes to all, I worry and pray for all of us.

Julie in Las Vegas

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alicia's picture
Replies 6
Last reply 7/1/2011 - 1:23am

Hi everyone I went to Vandy this past Friday to a derm that specializes in patients with multiple primaries and genetic mutations. I have had 3 primary tumors (1) >2.3mm Clark IV stage 3 SN+ (2) 0.59mm Clark II (3) >2.3mm Clark IV stage 2. All 3 have been amelanotic. This new dr says I fall into a category of the unknown genetic mutations because all mutations are not known at this time and he has never had a patient present with all their mukt primaries amelanotic. He said I make him very nervous and he's concerned because these amelanotic tumors are hard to diagnose. Anyways he did two punch biopsies in my back near my most recent wide excision and he found two swollen lymph nodes in my right groin. I went to my oncologist who said she was concerned about progression of disease and ordered a PET scan which I got the results today from my online acess to my hospital chart. I haven't actually spoke to my dr about these results but from what I've read there was no convincing evidence of metastatic disease or uptake in these nodes. My question is does this mean cut and dry these nodes should be negative or do u think my onc will want a biopsy. She said if they are hot on pET she wanted to do ex idol al biopsy but she never said what to do if it was neg on PEt. Just wondering your thoughts and has anyone had a neg PET and nodes still positive on biopsy?

Thanks live u all

Alicia

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Lisa13's picture
Replies 13
Last reply 6/30/2011 - 11:28pm

There is so much talk about all these wonderful new treatments for BRAF positive people.  Don't get me wrong, I'm extremely happy for everyone who will benefit from these drugs - they've come a long way!  That being said, what about the rest of us?  Is research now heading into the direction of the wild types?  I got so excited about the new vervemurafenib drug until I found out it was only for BRAF positive people. I truly hope that they find something for the rest of us so that we too can get excited about something.

I asked my surgical oncologist to test my tumour for all mutations so that I could be prepared going forward.  I'm happy I signed my tumour over to the lab for TIL testing because that could be an option in another 6 months.

I'm so thankful for all these breakthoroughs. I do believe that survival stats will double within the next 5 years.

Best of luck!

Lisa - Stage 4

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

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