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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mahdusia's picture
Replies 13
Last reply 6/1/2011 - 8:59am

Hi,

I have a problem with getting directly to main investigators/people responsible for running clinical trials. My father is stage IV, with mets in brain and critical condition of liver. Our doctor proposed the mixed chemotherapy, which I think is a last resort in this case, convincing us there is no possibility to get e.g. PLX4032. I was trying to find some information about PLX via Genentech, but the only answer I got was "please contact your physician or Roche", and for the application forms to Roche nobody has yet answered (sent 5 days ago)

Does anybody have any direct contact to hospitals/people and also requirements to be approved for PLX4032 clinical trials? I'd be absolutely grateful for information.

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annabanna's picture
Replies 6
Last reply 6/1/2011 - 7:11am

went to dermatologist and got pathology report showed malignant melanoma

brealow depth 1.05mm

clarks level IV

regression absent

luceration absent

mitoses less tha 1/mm*2

dermatologist said that will have to wait to see surgeron to find out more and he does not think waiting to june 2nd is a problem the mole is on my back

tina

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sheri47's picture
Replies 7
Last reply 6/1/2011 - 2:45am
Replies by: JerryfromFauq, lhaley, nicoli, Anonymous, sheri47, ValinMtl, washoegal

ok my mom  a stage 4 since 2001, first was in 1982 left heel. with recurrances 2005 2009 and now 2011.

 2001 was in her belly encased in a lympnode, well now 3 soft tuessue mass same foot but up near ankle more now,

 seen orto, onco dr today and he said he could amputate but no  guranty that it will not come back, she is 75 and not in the greatest of health, so she was happy with the decision not to amputate but  they r just going to let it go and when they get bigger and causing pain try rads for pain relief,  but she has said she want quality of life at this point,

 i hate this cancer crap

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Julie Griffiths's picture
Replies 11
Last reply 6/1/2011 - 1:22am

I haven't been on the board for a LONG time --- I used to be julieincanada but I can't figure out how to sign in under that with the brand new site!!!

Briefly my husband Peter was dx Stage 3 in August 2001. He was given the very dismal px of the time and had a node dissectrion, another surgery for a regional recurrence, a year of IFN and radiation. The treatment took a huge toll on him and our family. Peter ( we think because of having IFN and radiation at the same time) had severe brain fog and was off work for 7 years ( unable to drive for 3). He still has peripheral neuropathy , some bone necrosis in his rib from the radiation, and scarring from the radiation.

BUT he is here to tell about it. Was it easy ....no way....

the reason I decided to reconnect was a result of a conversation I had with our daughter yesterday. She was dx with a Brain Tumour 18 months ago.. the short term is wait and see post surgery and the long term in not very promising ... she is 40. She has connected through a similar board for BT with a 16 year survivor ... how great is that! Then I was thinking that there are probably many out there - they just get on with their lives and the "Board" time dwindles.

Soooo there is a survivor in BC In Canada who is 9 years post dissection, IFN, radiation and more that one bump in the road. He has a life, he has seen two grandchildren born and he has been back working for 3 years. Are we terrified everytime he goes for his annual check - you have to believe it .... He recently qualified for life insurance!!!

Soooo have the faith, focus on the success stories and in your darkest moments ( you have to believe we have had many) remember there is hope.

Julie

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Bill G's picture
Replies 3
Last reply 5/31/2011 - 9:25pm

Durable Complete Responses in Heavily Pretreated Patients with Metastatic Melanoma Using T Cell Transfer ImmunotherapyClin Cancer Res. 2011 Apr 15;[Epub Ahead of Print], SA Rosenberg, JC Yang, RM Sherry, US Kammula, MS Hughes, GQ Phan, DE Citrin, NP Restifo, PF Robbins, JR Wunderlich, KE Morton, CM Laurencot, SM Steinberg, DE White, ME Dudley 

Currently available and experimental therapies for metastatic melanoma produce very few durable complete responses and, thus, a low chance of cure. Rosenberg et al from the National Cancer Institute report results of a new approach for these patients: the adoptive transfer of autologous tumor-infiltrating lymphocytes (TILs) selected for antitumor activity and expanded in vitro. The study involved 93 patients with metastatic melanoma who were heavily pretreated with standard and experimental regimens.... 

http://www.oncologystat.com/journals/journal_scans/Durable_Complete_Responses_in_Heavily_Pretreated_Patients_with_Metastatic_Melanoma_Using_T_Cell_Transfer_Immunotherapy.html 

 

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washoegal's picture
Replies 8
Last reply 5/31/2011 - 9:19pm

I am one of the "lucky" ones  with the BRAF mutation or so says my ONC.  Anyway my question for some of the more well studied in this group, if you have a gene mutation does that mean it effects you no matter you status (ie NED).  Specifically, is that Gene mutated within your body not just a Melanoma  Tumor?  What got me wondering was when my Onc suggested I have my regular cancer screenings Breast, Colon, etc more frequently.  Then I started reading the BRAF shows in Colon, non small lung, etc.  What I know about genes I can fill on about two lines.

Thanks,

Mary

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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nicoli's picture
Replies 1
Last reply 5/31/2011 - 9:11pm
Replies by: nicoli

Could this be as great as it seems? Dated June, 2011, but it's not even June yet, so I don't understand. (Not an advertisement.) Sorry bout the font, can't seem to fix it.Complete regression of subcutaneous and cutaneous metastatic melanoma with high-dose intralesional interleukin 2 in combination with topical imiquimod and retinoid cream.

Source

aDepartments of Dermatology bSurgery, Division of Surgical Oncology, University of California Davis, School of Medicine cDepartment of Veteran Affairs Northern California Health Care System, Sacramento, California, USA.

Abstract

There are limited treatment options for metastatic melanoma, which is almost universally fatal. We report the successful treatment of 64 of 64 cutaneous and subcutaneous melanoma metastases in three patients using high-dose (22 million units per 1.2 ml) intralesional interleukin 2 (IL-2) in combination with topical imiquimod and a retinoid cream. Before intralesional therapy, all patients had been treated surgically and were no longer considered surgical candidates. Rebiopsy of 15 of the treatment sites and long-term follow-up (10, 12, and 27 months) showed regression of all treated tumors. Six months after discontinuation of therapy, one patient developed multiple new cutaneous metastases, but these were also responsive to treatment with intralesional therapy. The other two patients did not experience recurrence of their cutaneous melanoma. However, one of the two patients developed lymph node and brain metastases 18 months after initiation of intralesional therapy, but is still alive, now at 27 months. The concentration of IL-2 used for the intralesional therapy was much higher than in previously reported cases, which may explain the excellent responses that were observed. These results support intralesional high-dose IL-2 as a very effective therapy for controlling cutaneous metastatic melanoma. Additional studies are needed to determine whether this therapy is associated with a survival benefit. 

 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Durable Complete Responses in Heavily Pretreated Patients with Metastatic Melanoma Using T Cell Transfer ImmunotherapyClin Cancer Res. 2011 Apr 15;[Epub Ahead of Print], SA Rosenberg, JC Yang, RM Sherry, US Kammula, MS Hughes, GQ Phan, DE Citrin, NP Restifo, PF Robbins, JR Wunderlich, KE Morton, CM Laurencot, SM Steinberg, DE White, ME Dudley 

Currently available and experimental therapies for metastatic melanoma produce very few durable complete responses and, thus, a low chance of cure. Rosenberg et al from the National Cancer Institute report results of a new approach for these patients: the adoptive transfer of autologous tumor-infiltrating lymphocytes (TILs) selected for antitumor activity and expanded in vitro. The study involved 93 patients with metastatic melanoma who were heavily pretreated with standard and experimental regimens.... 

http://www.oncologystat.com/journals/journal_scans/Durable_Complete_Responses_in_Heavily_Pretreated_Patients_with_Metastatic_Melanoma_Using_T_Cell_Transfer_Immunotherapy.html 

 

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Teodora's picture
Replies 14
Last reply 5/31/2011 - 7:04pm

Hello everyone,

I am new to this forum where no one wants to be, but we all found oureselves on .I hope to find some advice and support troughout what seems to be a very  lonely journey due to the rarity of this desease.

Here is a brief history of it:

In June during a family  trip/me and my husband/ to my native country of Bulgaria I  suddenly started bleeding:the bleeding was  spontaneous and intense with no previous pain or any other symptoms .On the second day they rushed me into the ER where where they immediately  performed emergency procedure to clean me up.The doctor said I seem to have a cyst on my uterus  that could be giving me problems further down the line and he  suggested hysterectomy at some point as a precaution measure.We barely made it back  home to the US, when the  next month I had another massive bleedig:a life saving hysterectomy was performed to removed my uterus with what showed via ultra sound to be a fibroid attached to my utterus and cervix.

I merely made it because my haemoglobin levels hit the critical 6 number  where I needed blood transfusion.One week after the surgery,still weak and exausted they called us in and gave us the devastating news: the tumour was malignant melanoma, which I never heard of/on the uterus/.They doc didn't sound  very hopeful, he said is a very rare and aggressive kind of cancer and he gave me no more than few months to live.No need to say we were shocked and devastated and tottaly blown away;I was preparing to go quetly.

Amazingly, the subsequent CAT scan didn't show anything.At this point I was referred to an ovarian cancer oncologist at the Maine Medical Center in Portland, Maine.The PET scan  they did  in August 2010  came back clean. Everybody was totally puzzled.I had a second surgery with my doctor to remove tissue and  lymph  nodes-the biopsy came back negative for cancer.My second PET scan 6 weeks ago  came back clean too.Anyway the pap smear my doctor  made on the same day we were discussing the pet results   showed  up some suspicious cells.I've  had a  biopsy 20 days ago and the result came back  positive for melanoma again.Luckily it was a very, very tiny spot on the top of my vagina near the surgery that was just taking a root, around 1 mm big.The oncologyst said she we were lucky to find it  at  all.They presume this were few cells from the original tumour that started  growing there .They didn't see anything else,she said my vagina looked pink and clear  except for that little spot with a ring of inflammation around  it.I am about to start 5 weeks of radiation to secure the area from any residual melanoma cells, also I have been referred to an oncologist  to discuss possible further  treatment.I did a lots of research on the Internet and I am dreading they will offer me Interferon/ or wait and watch/: I have a history of major depression on and off  and I have  asthma/breathing problems, sometimes experiencing  panic attacks, controlled by Xanax.I've heard this treatment is definately No No for people with history of  psychiatric  problems.Also I have almost zero tolerance to med's side effects with even simple over the counter meds making me sick with vomitting and nausea, like drammamine, allegra,doxycicline .Interferon  sounds like a very toxic treatment with minimum effectiveness so I already  pretty much  made my mind p that  I am going to opt out of it.Also I read radiation is not very effective on melanoma as they say melanoma is often deemed  radio resistant.

I  contacted Dana Faber Center in Boston and required  expert consultation on possible treatment options:they haven't come back to me yet.

Any advices/recommendations?I know it varies individually from person to person and  that is my main worry.Ho do we know what will work  best for us and what course of action to take? 

Thanks  to everyone that will come back to me with any advice,

God Bless,

Teodora

 

 

 

 

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debandmike's picture
Replies 2
Last reply 5/31/2011 - 6:47pm

My husband, Mike is going to attempt to return to work tomorrow after 6 wks. off work and his first series of IL-2. He is still a bit under the weather but wants to try returning to work. He was wondering how long other patients took after IL-2 treatments to return to "normal?" He will have a scan on June 17th, results of scan June 21st and than more than likely back for another round of IL-2 in July.

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JerryfromFauq's picture
Replies 2
Last reply 5/31/2011 - 4:23pm

LONG and Interesting Article which will have running on-line updates.

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257

Abstract:
While advanced melanoma remains one of the most challenging cancers, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapeutic decisions. Genetic analyses of melanoma have uncovered several key molecular pathways that are involved in disease onset and progression, as well as prognosis. These advances now make it possible to create a “Molecular Disease Model” (MDM) for melanoma that classifies individual tumors into molecular subtypes (in contrast to traditional histological subtypes), with proposed treatment guidelines for each subtype including specific assays, drugs, and clinical trials. This paper describes such a Melanoma Molecular Disease Model reflecting the latest scientific, clinical, and technological advances.

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

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nicoli's picture
Replies 6
Last reply 5/31/2011 - 1:15pm
Replies by: nicoli, Sherron, lhaley, FormerCaregiver, Drew N, Anonymous

I am a little depressed and troubled by the events of this week. Been lurking and posting on this site for about 1 year now and have not seen another period of time when so many have left us or have called on hospice.

This is sad.

Nicki , Sta        ,

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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This may be of interest, it is from The Life Extension Foundation (www.lef.org).

Given the vital role of the immune system in keeping patients cancer-free after treatment of all kinds of tumors, researchers in Rome studied immune-boosting treatments for patients with one of the most deadly and treatment-resistant cancers, malignant melanoma.31 Early and aggressive surgery has been the mainstay of treatment for this deadly form of skin cancer.32 The addition of treatment with immune-boosting cytokines such as interferon-alpha and interleukin-2 has slightly improved survival but at the cost of significant side effects.33 The Rome researchers had noted that melanoma patients have low levels of CoQ10, and reasoned that the addition of the nutrient to interferon therapy might enhance its success while reducing side effects. They conducted a three-year trial of uninterrupted treatment with low-dose interferon-alpha only, or with the addition of 400 mg/day of CoQ10 in patients with early melanoma following surgical removal of the tumors. They followed the patients all the way out to 5 years following treatment. Remarkably for such a lengthy study, no patient withdrew from the trial as a result of side effects. Most importantly, the disease progressed much more slowly in the interferon plus CoQ10-treated patients, who also had a significantly reduced rate of recurrence of the tumors than the unsupplemented group.31

Read complete article at:

http://www.lef.org/magazine/mag2008/feb2008_Coenzyme-Q10-And-Cancer_02.htm

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gene_S's picture
Replies 5
Last reply 5/31/2011 - 12:33pm
Replies by: Gene_S, Anonymous, LynnLuc, boot2aboot

see:   http://naturalstandard.com/news/news200602007.asp

Please note that there is a difference in CoQ10 products.

The best one should have "Ubiquinol" on the label not "Ubiquinone".

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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lovingwifedeb's picture
Replies 19
Last reply 5/31/2011 - 12:07pm

My husband passed early this morning, May, 27th 2011

I want to thank all who gave me support on this discussion board when I needed to vent during the year of Bob's diagnosis. I have a lot of anger to sort through as caregiver to one beloved husband, father, brother and son who fought this battle with heart. I don't know if I will ever be able to forgive melanoma for what it's done to our family and to the heartfelt stories I have read. If I do nothing else for the rest of my life it will be to tell my husband's story to anyone who will take the time to listen to me and be warned of it's horrible dangers.

Diagnosed Father's Day, 2010, Unknown Primary
Staged at 3
Changed to Stage 4 when 1 tumor was found in Brain in January, 2011

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