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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Hi - sorry this question is so silly.

My history- mm in-situ, family history, over 100 moles, 50+ removed (some mild, some moderate, some severe and some benign)

Had a bunch off recently and one was benign w/ a peripheral margin involved.

Derm underlined that part and wrote "observe"... I'm not one for observing, but I assume in this case, re-excising a benign mole would be extreme overkill?

I'm annoyed because it was totally excised (or so I thought) by a derm who specializes in surgery....

Wasn't sure if I should call dr to just check.

Thanks- best wishes to you all!!

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/1/2011 - 9:04pm
Replies by: Vermont_Donna

Hello everyone!  I am stage 4, began IPI on May 2nd and had my 2nd on May 24th.  I have been finding bruises with lumps under them, first started showing up after my first infusion and then found more after my 2nd infusion, my doctor told me it is too early to start seeing reactions to the IPI, but I believe that is what I am seeing....I find it hard to believe that just out of the blue these start pooping up....I have read other topics etc.  What have the rest of you experienced, have you experienced this also and how soon did you find these appearing if so.....

When I called at first the PA told me this is common and they will go away...so is this the melanoma being found by my immune system and surrounding it, preparing to destroy?  I would sure like to hear from the rest of you on IPI.  I'm not freaking out, but would be more reassured if others have had this happen also. 

Thanks for you time.........go IPI go!!

Get a skin check at least once a year by a dermatologist and stay out of the sun.

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I've created a community facebook page called "Melanoma Warriors-University of Colorado Cancer Center", in hopes of creating a support network among UCCC patients.  And maybe we could also collaborate on a fundraising project for "our" cancer center or a larger cause like MRF?  http://www.facebook.com/#!/pages/Melanoma-Warriors-University-of-Colorado-Cancer-Center/215693965130780

Rich

www.hotelmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 7
Last reply 6/1/2011 - 3:16pm
Replies by: Carol Taylor, kfalkinburg, Anonymous, jackiewin

Has anyone got IPI (yervoy) paid for by their medical insurance company??

 

How diffficult was the approval process??? What medical Insurance company approved IPI??

 

Has Medicare approved IPI yet??

 

Thanks

Jamie

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amyb's_sister's picture
Replies 31
Last reply 6/1/2011 - 1:08pm

Amy's battle with melanoma ended today, 05/21/2011. A long and courageous fight! A True Warrior! We know that Amy touched many people with her determination and spirit to overcome this disease and you touched her. For that we say Thank You! Please remember Dennis, Cayla, and Dylan as they begin a new battle. Your thoughts and prayers are part of what armed Amy in her fight. Remember her Faith, Courage, and Relentless Determination to learn and reach out to others in their battles as well. We truly thank you all!

Amy's Mom, Dad, and Sisters 

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Replies by: boot2aboot, LynnLuc

Although melanoma vaccines sound good in theory, it looks like researchers still have a
lot of work to do. Here is an abstract of a review of the relevant clinical trials:
http://journals.lww.com/melanomaresearch/Abstract/2011/06000/Vaccine_therapy_for_metastatic_melanoma__.1.aspx

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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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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