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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renakimu's picture
Replies 4
Last reply 7/22/2011 - 8:57am

my mum today took her ct of lungs, it show two lung nodules one 3mm and another 4mm, ground glass.does anyone had a same expirience.can that be melanoma?can that be just a cought?

please responde because i will lost my mind...

thanke you all

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DeniseK's picture
Replies 5
Last reply 7/22/2011 - 6:52pm

Hi All,

I hope everyone is doing good today!  It's so nice outside!  I just got back from San Francisco at the Melanoma Center.  I had an awesome day, we walked down to Haight street, walked on the beach at the Presidio, drove across the Golden Gate Bridge, and of course saw the specialists.  They're recommending either 1 year Interferon or 5 years PEG Interferon.  With an ulcerated tumor both these treatments have shown a better OS rate and decreased recurrence rates.  It has something to do with the ulcerated characteristics.  Anyway I'm going to do the 1 year Interferon.  The 5 year PEG is still toxic and I just can't imagine being sick with side effects for 5 years.  Dr. Spitler said that in the PEG study NOONE made it to the 5 year mark so it's really an unrealistic treatment.

She is also recommending that I get full blood work done, CBC, LDH, chemistry? & Vitamin D levels checked.  This was interesting because I read somewhere that Vitamin D which we get from the sun is usually low in patients diagnosed with Melanoma.  Vitamin D helps our bodies fight cancer so it's important to keep up our levels. 

I'm going to be referred to a local oncologist next week to discuss treatments and tests.  I'm hoping to start treatments August 1st.  I know the Interferon controversy but with the specialist recommending it and from what I've researched I feel like this is the best treatment for me. 

Oh Yeah!  We met this couple there, Richard and I can't remember his wifes name but she is blonde and pretty.  I was hoping to talk more to them.  I don't know if he's on this site or not but his Melanoma was on his ear, he did 1 year interferon then he recurred and now has it on his liver and spine.  I was hoping to talk to them more but we didn't see them again.  If anyone knows them please let me know. 

Denise

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

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djpayn's picture
Replies 18
Last reply 7/23/2011 - 5:03pm

Hello Everyone.

 i am going to start with a short history - me:stage 3c, tumor in right ankle, melanoma in knee and groin nodes - all removed in july of 2008. did INF and radation, been NED ever since. I had a PET scan in april that showed activity in my right foot, my ONC wasnt overly worried and agreed to rescan in 3 months. Since then my PC dr. has been doing monthly blood work due to my sever vitamin D deficiency. IN june my WBC was 8.6. My july WBC is 10.8.

My PC is worried about mel returning as she cant find any other reason for my elevated WBC (no signs of infection, illness, etc..) She ran through a list of symptoms and the only one i have is severe night sweats, which i have told both my ONC and PC that had been increasing. My July PET got moved to sept also.

 

I called my ONC today and am waiting for a return call because now i am much more worried. As far as my foot and ankle goes, i have not noticed anything from a visual standpoint that would indidcate a reocurrance.

I checked back through all my records to check my WBC. At the height of my cancer (weeks before the tumor came out) my WBC was only 9.7 - when i had a severe infection months later my WBC was 11.4, and during radation my WBC was 3.6        Again, i have no symptoms that indicate infection, allergies, etc.

 

Does anyone know enough about WBC's to be able to explain this to me a little better? I am going to request my ONC do labs soon also as well as try to get my PET sooner. But, should i ask for any other tests, like a CT or MRi instead (or in addition to)?

My last ONC appt. went well with alot of reassurances that i was doing great and that PET's often give many false positives, etc... yet i know that before i was diasgnosed, i was healthy as a horse but had night sweats. Now that these symptoms seem to be returning, i am getting very scared again.

Thanks for reading and for any advice you have. I am going to annoy my doc's until i get seen - im just hoping i can get a few opinions here to help ease my mind (or set me straight). thanks again.

dawna (djpayn)

 

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MariaH's picture
Replies 12
Last reply 7/24/2011 - 9:47pm

Dave and I have been in contact with NIH regarding their clinical trial with TIL, chemo, irradiation, and IL-2.  They are asking that once we get the results of Dave's pretesting for IL-2 at Roswell, we forward them to them.  They said they can remove part of Dave's tumor prior to doing IL-2 treatment at Roswell and start growing the TIL cells if IL-2 fails.  Since the IL-2 protocol takes up to 8 weeks, this to me sounded like a good back up plan.  However, now I am wondering - should Dave do the IL-2 first and wait to see if it works or should he look into going to NIH and start his treatment there (IF he is accepted by them)?

I guess having options is better than having none, but it really is so difficult to decide.  Any thoughts/opinions would be greatly appreciated.

 

Maria & Dave

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jmmm's picture
Replies 3
Last reply 7/20/2011 - 9:46pm
Replies by: ValinMtl, JerryfromFauq, Anonymous

My husband was dx with stage 4 in January.  He had 2 surgeries to remove 2 tumors (sm. bowel and lung).  He has the c-kit marker and was put on Gleevec for 7 weeks.  A follow up scan showed 2 new tumors--one in the small bowel and one near his heart.  His dr. started him on Yervoy.  He completed his 4 doses and just had his 12 week scan.  The GI tumor was completely gone and the heart tumor was "dead" and half the size before treatment.  We were amazed.  Unfortunately, there was some activity in some lymphnodes in his belly--the radiologist believes it to be new tumors--the largest one was 2.4 cm with an uptake value of 5.6.  These tumors were not there before the Yervoy treatment.  The Dr. isn't sure what to think--my husband is the fist patient he's treated with Yervoy.  He thinks it could just be an immune reaction from the Yervoy.  Has anyone heard of a yervoy taking care of tumors, but allowing new tumors to grow??  Or has anyone heard of yervoy causing lymphnodes to appear as new metastisis??  The Dr. wants to rescan in 6 weeks, but we're both nervous waiting.  Any thoughts??

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Patients with metastatic melanoma have a poor prognosis with a 5 year survival rate of about 5%1. There are two FDA approved treatments for these patients.

Dacarbazine has an objective  response rate of approximately 12% with 2-3 % complete responses that are often transient2.

Interleukin-2 (IL-2) has an objective response rate of approximately 15% with 4-5% durable complete responses3.

Results of two new experimental agents have recently been reported for the treatment of patients with this disease.

Ipilimumab, an antibody against the inhibitory lymphocyte receptor, CTLA4, mediated a 3.6 month improvement in median survival with an objective response rate of 7% in 540 patients but only three patients (0.6%) achieved a complete regression4.

 PLX4032, an inhibitor of mutated BRAF, had an objective response rate of 77% in 48 patients with 3 (6%) complete regressions5.

The very small number of durable complete responses make it unlikely that many patients with metastatic melanoma will be cured utilizing any of these approaches.

This is why we must try combinatorial Therapy  with or without vaccines or Adoptive cell therapy (TIL) with Dr. Rosenberg.

 

IMPACT OF PRIOR TREATMENT ON RESPONSE TO CELL TRANSFER THERAPY USING SELECTED TIL

 

  Source: Durable Complete Responses in Heavily Pretreted Patients with Metastatic Melanoma Using T Cell Transfer Immunotherapy

Cancer Res Published OnlineFirst April 15, 2011.

Steven A. Rosenberg, James C. Yang, Richard M. Sherry, et al.

=========================================================================

Based on 2005 data... Rosenberg has improved the protocol since then.

 

I thought you might like to know

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Laurie from maine's picture
Replies 7
Last reply 7/21/2011 - 7:04am

hi,

I just came back from hospital where I had a tumor removed from intestines which was causing a blockage.  The tumor removed from intestine was melanoma and scans found tumor in my liver and left lung  Brain mri showed all clear there..  I also am having strong pain in my left shoulder pretty constant so they re thinking it is in my bones there.  Met with Dr Lawrence mass general yesterday.  My tumor is being tested for Braf and that is the option he suggests we go if I test positive.   We will discuss what we do if I am not Braf positive, I believe they were leaning to ippilumb(sp?).  My husband and I are trying to absorb all of this. 

I believe Dr Lawrence is one of the best as far as being up on reseach and trials and am feeling that he can help guide us thru this.

any thoughts? I know it is real basic info, my family is currently overwhelmed as my baby sister is in hospital today having double masectomy and we are all trying to surround her and help her thru this, so timing for my melanoma to resurface stinks.

laurie from maine

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chet's picture
Replies 14
Last reply 7/21/2011 - 9:02pm

Hello everyone. It's been a good minute since I've posted anything on here so I thought I would update you on what's  been going on with me. Well, I wasn't really a responder to IL-2 so I started Yervoy in June. I'm the first person to receive it in San Antonio so they're watching me very carefully. I'll be getting my third infusion tomorrow morning. So far, so good. I haven't had any crazy symptoms, just the rash, but that is managable. It comes and goes. I was wondering for the people that were on Yervoy before and responded, about how long did it take to see results? I have no visible melanoma on my skin so I'm not able to monitor my progress. I only have one visible tumor and that's my lymp node right about my left clavicle. I honestly can't tell if it's the same or shrinking. It definately feels a little softer than before but I'm not sure if it's getting smaller. I've been lurking the board and seeing some others are on Yervoy, too. Best of luck to all you guys, y'all are def in my prayers everyday. 

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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Gene_S's picture
Replies 3
Last reply 7/20/2011 - 7:07pm
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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TracyLee's picture
Replies 16
Last reply 7/22/2011 - 5:21pm

Hi y'all,

I saw my surgical oncologist yesterday. He feels I'm NOT responding to ipi. My neck is very distended and he's quite worried that it has invaded my neck muscle and vascular vein.

I'm jumped to the top of the appointments list and see Dr. Sharfman and possibly Dr. Koch (head/neck surgeon) on Friday. CAT scan today.

I am so upset. Obviously I'll know more Friday, but doc feels I probably need IL2 (UGH) and radiation AND radical neck surgery.

Not in a good place right now, at all.

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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gabsound's picture
Replies 11
Last reply 7/21/2011 - 11:48pm

I have a tentative plan to start biochemo in 7-10 days. I was researching last week about radiation and could swear I read something about an ongoing study with very good results when radiation was used before starting chemo or possibly biochemo.
Does this sound familiar to anyone?
I'm thinking it was being done in the pacific northwest.
If anyone has a source for this could you please post?
I need to get more organized about this searching I do online.
I found out my original tumor was at a Caris lab and us currently being tested for mutations as well as what treatments it may respond to. I'm hoping this cones back soon. It would be nicest have more facts to base treatment decisions on.
Welcome to our new posters.

Hanging in there in las Vegas,
Julie

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RMcLegal's picture
Replies 1
Last reply 7/19/2011 - 10:24pm
Replies by: Anonymous

If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.

http://www.facebook.com/#!/FriendsofMelanoma

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If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.

http://www.facebook.com/#!/FriendsofMelanoma

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RMcLegal's picture
Replies 3
Last reply 7/20/2011 - 4:08pm
Replies by: RMcLegal, washoegal, Anonymous

If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.

http://www.facebook.com/#!/FriendsofMelanoma

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dodgedh2's picture
Replies 19
Last reply 7/21/2011 - 9:24am

I'm new to this board. I was diagnosed with Stage 4 melanoma (unknown primary) 3 years ago. Following a CT scan for an unrelated ailment, the doctor found a single tumor in my sacrum which was removed surgically and treated with a gamma knife. Since then, I have thankfully been NED. Although I am adjusting to this life changing event, I still worry that it will return. I'd like to hear from others who have survived Stage 4 and especially those who may have experienced recurrance. I'd like to know how long before recurrance, severity when it returned, and generally what I might need to expect. I realize that Stage 4 isn't good and I'm aware of the prognosis, however, I've heard of people who have been Stage 4 for decades and I'd like to hear from more that have similar circumstances.

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