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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Laurie from maine's picture
Replies 39
Last reply 10/9/2012 - 9:21pm

A couple of years ago people on this site did what I think they called an old fashioned bell ringing -  I believe the way it went is everyone went on and signed in and said they  were ringing a bell in memory of someone.

 

I wanted to say bells are ringing loud and strong here and maine for kevin!

laurie from maine

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I haven't found how to download it yet, but it can be viewed in sections on line or ordered telephonically.  Sections can be downloaded by veiwing and then "Saving AS" from the file menu.

Single give away printed copies of CancerResource can be performed by job AICR during 1-800-843-8114, Monday by Friday, 9:00 AM to 5:00 PM Eastern Standard Time.

 

er.aicr.org/new/flipbooks/CancerResource/index.html

http://cancerwhatis.info/aicr-offers-diet-and-activity-tips-in-free-e-bo...

 

CancerResource: Living With Cancer

The not-for-profit American Institute for Cancer Research (AICR), noted for its investigation of links between lifestyle and cancer and now in its 30th year, has released a free digital book for cancer patients and survivors, with current, evidence-based advice on managing diet and activity during and after treatment.

The 44-page book, called “CancerResource: Living With Cancer” represents “a completely retooled version of the free information kit that AICR has offered newly diagnosed cancer patients and their families for decades,” the AICR noted in a news release. It’s expected to be especially valuable because it “focuses on the questions that patients tell us they have a hard time finding answers to,” said Alice Bender, a registered dietitian with the AICR. “There’s been a lot of new research on diet and exercise during treatment in the past few years, for example, and CancerResource translates those encouraging findings into useful tips.”

CancerResource begins with an introduction on how to use the guide, and includes these sections:

● During Treatment: Healthy Eating
● During Treatment: Getting and Staying Active
● After Treatment: Healthy Eating
● After Treatment: Getting and Staying Active
● Cancer and Its Treatment: General Information

Its content includes:

● Tips on understanding the diagnosis and finding a healthcare team
● Worksheets with questions patients should ask their healthcare providers about their diagnosis and its treatment
● Ways to use good nutrition and physical activity to help make treatment more tolerable
● How to cope with diet-related side effects and stay active during and after treatment
● Answers to “hot topics” questions about dietary and phytochemical supplements (eg, soy), macrobiotic and vegetarian diets, dietary fiber, and more
● Common cancer terms (in a glossary)
● Useful resources for patients (information about, and links for, the AICR, the National Cancer Institute, American Cancer Society, Healthfinder, MEDLINEplus, and OncoLink)

Besides the main CancerResource book, there are also CancerResource programs focusing on breast, lung, colon, and prostate cancer.

Single giveaway printed copies of CancerResource can be performed by job AICR during 1-800-843-8114, Monday by Friday, 9:00 AM to 5:00 PM Eastern Standard Time.

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

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Linny's picture
Replies 13
Last reply 10/5/2012 - 1:40am

He is now with the angels.

There is a guestbook on this web site that you can sign.

http://www.legacy.com/obituaries/citizen-times/obituary.aspx?n=kevin-kagel&pid=160238700#fbLoggedOut

Stage III, Unknown Primary; 1 positive node in left axilla

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_Paul_'s picture
Replies 6
Last reply 10/28/2012 - 4:42pm

Hi everybody. I was at Johns Hopkins last week getting screened for their GVAX trial. I found out yesterday that their MRI found a 5mm "enhancement" in my skull directly under where the primary was (which was found in June and I am already at IIIa). The MRI itself is inconclusive as to whether it is a met or not. So if any of you have gone through something like this before I wonder how the Dr.s can verify if it is a met or not? Would they biopsy the bone itself? If it is a met how would they treat it? I don't know anything about radiation, but it would seem that the skull is a tricky place for it. So maybe they would remove bone to clear margins in the skull?

Thanks - Paul.

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Amanda's picture
Replies 1
Last reply 10/20/2012 - 10:41pm
Replies by: Sandy11

http://www.prnewswire.co.uk/news-releases/new-four--and-five-year-survival-data-for-yervoy-ipilimumab-in-treatment-naive-and-previously-treated-metastatic-melanoma-presented-at-the-esmo-2012-congress-european-society-for-medical-oncology-171918371.html

                      "New Four- and Five-Year Survival Data for YERVOY® (ipilimumab) in Treatment-Naïve and Previously-Treated Metastatic Melanoma Presented at the ESMO 2012 Congress (European Society for Medical Oncology)"

"Give thanks in all circumstances"

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Replies by: deardad, Swanee

It is is important to let others, in a legal way, know how you wish to die.  

I know, it is not a popular subject; but with all the constant hand wringing around here, the obvious seems to escape some.

Do you have a living  will?  Do you have advanced directives?  Do you have clearly defined medical directives that remove others from altering your end of life wishes?

It is important to do so.  For instance, in my case, after 21 days of vegatative state on supplemental nutrition; all that will be discontinued.  No family member or outsider can chage that because I have advance directives.

In addition, my directives are very specific about my body and what I want and do not want.  No embalming, cremation and what is next.

See, this way, all the arguments are over.

In my mind, this is one part of self determination.

Either way; take heed and take charge.

Cheers

Charlie S

 

 

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Phil S's picture
Replies 16
Last reply 10/17/2012 - 2:51pm

We got good news this week, Phil's scans on Monday showed that his brain MRI is fine, his lung tumors are stable, and his stomach cavity tumors are shrinking slowly. These scans were almost 5 months after Phil received his T cells during the TIL trial in Houston. So we are cautiously pleased with these results and now get another three months with no treatment before his next scans to enjoy our kids and a much anticipated trip to Orlando. Phil's blood counts have rebounded nicely and he will most likely out walk us all at the Disney parks.

Just to encourage any stage 4 people who need a story of hope, Phil needed an emergency craniotomy a year ago, had WBR, six rounds of biochemo, and TIL, so from September 2011 to June 2012 he had non stop treatment! But, the great thing about TIL is once it's done you just hope the immune system takes over! Phil has been feeling well and hasn't had any treatment since the second round of high dose IL2 (part of the TIL trial) the first week of June. So, to us having the whole summer and now the whole Fall without treatment and with stable disease is an answer to our prayers. So to all the warriors in the battle, keep fighting, you just never know with this disease. And, to all the warriors who are looking down on us, your courage has inspired us and we have not forgotten you! God bless, Valerie (Phil's wife)

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carwil's picture
Replies 2
Last reply 10/5/2012 - 2:24am
Replies by: Anonymous, Charlie S

Hello.  My name is Carrie Wilson.  I am currently gathering information for a final  research project on patients with melanoma who have received Interferon.  I am looking for anyone willing to share medical records such as pathology reports, oncology reports, and personal feedback.   All names and identifying information should be withheld.  I would greatly appreciate anyoe that is willing to help.  My email is oahuwilson@gmail.com  Thank you all for your time and interest.  I hope that someday I will be able to make a difference in this field of research.  Godspeed

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momreader's picture
Replies 6
Last reply 10/22/2012 - 4:17pm

My father has melanoma in 2 places in his right leg.    It's in his lower leg and upper leg/thigh area.  He has already had a clinical trial (ipi plus mdx1106) which was a disaster for him, plus he had chemotherapy which hasn't worked.  Now they want to do an isolated limb infusion.  (Not perfusion).  Does anyone have any experience with this? What are the side effects?  What is the recovery like?  Does it affect ambulation?  Does it have good results and how long do they last?  Does anyone know the difference b/w isolated limb infusion/perfusion b/c his doctor (Sloane Kettering) said they only do ILI at Sloane.   We are nervous and any information would be greatly appreciated.  Thanks so much.

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gabsound's picture
Replies 5
Last reply 10/5/2012 - 9:47pm
Replies by: gabsound, Harry in Fair Oaks, Anonymous, Janner

I'm wondering how you with bone mets treat your pain. I'm trying to still work and am dealing with pain in my left femur. This is an area with definite changes seen on CT and on X-ray. At night I will take something with codeine, but during the day this makes me too sleepy to function.
Ibuprofen seems to help some, but I need to take 600mg every 4 hrs. I also found some indomethacin I used when I was in hospital doing biochemo. It is like ibuprofen, but lasts for 12 hours.

I saw the radiation oncologist today and he thinks we need to radiate. I was relieved to hear that, because I really don't want to get a fracture in my femur.

The trip to Angeles clinic went well. I really like Dr Hamid. I have to wait until after my next pet/CT to know which way things are going as I had a mixed response to last round of Yervoy. If stable or improved no need for clinical trial. He suggests carry on with more Yervoy. My insurance company is going to love that at $26,000 a dose (assuming they will pay again).

So in a holding pattern, but not coping all that well w the pain.

Any thoughts?

Julie in Las Vegas

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Julie in SoCal's picture
Replies 3
Last reply 10/2/2012 - 9:29pm
Replies by: gabsound, Anonymous, aldakota22

Hi there Friends,

I just wanted to post and say hey and that I'm entering my 5th year of NED.  Celebrate with me!

4 years ago when I was dx'd I was just starting my PhD and after dx I thought I would never finish.  Mel kicked me upside the head bad (and I think I went stupid for a year or so- it took me one year to finish a class).  But my school was fantastic to work with and let me finish things on my own schedule. Now my finishing worries are different as I still have to finish my dissertation, write comps, and pass my defense.  It's a good place to be. 

This is also a good place to be.  Thanks friends and MRF for keeping the MPIP board up to date and both an encouraging and informative place.

Peace,

Julie

Stage 3 WLE, SNB, LNB, HD-INF, GM-CSF

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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Anonymous's picture
Anonymous
Replies 9
Last reply 10/5/2012 - 8:21am
Replies by: Tina D, natasha, Linny, Anonymous, Janner, Tim--MRF

Hello All,

I am female 40 y.o. stage 1B patient (diagnosed in 2004). About 3 weeks ago I noticed strange bump on my vulva. It was slightly raised but I cannot say it is a mole because it appeared being in/under the skin. When I tried to define its shape by palpation, I cannot define it for sure. The color was reddish but that goes away when you press on it. The best way to describe it is that it is an induration in the upper part of the skin, which is raised. I was over the hill with worry. Saw OB/GYN who thought that it was a blocked folicle and said come back in 2 weeks if it doesn.t go away. This lesion was bothering me when I was walking (kind of burning sensation), besides, it had an erosion and scab on and off. Today (in 2 weeks) I saw OB/GYN who took it out for me (I insisted) and sent it away for pathology. He believes it is nothing and I am a crazy patient but I am very stressed thinking about what it may be. Can second primary of metastasis of cutaneous melanoma present in vulva???? How would it look like in vulva??? I am very, very worried. Thanks for listening.

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PV-10. Has anyone heard of this stuff? What is it?

http://www.dailyfinance.com/2012/10/02/provectus-pharmaceuticals-presents-final-phase-2-m/

KNOXVILLE, Tenn.--(BUSINESS WIRE)-- Provectus Pharmaceuticals, Inc. (OTC BB: PVCT, http://www.pvct.com), a development-stage oncology and dermatology biopharmaceutical company, announced that final top-line data from its Phase 2 clinical trial of PV-10 for metastatic melanoma were presented at the ESMO (European Society for Medical Oncology) 2012 Congress in Vienna, Austria on October 1, 2012. The data were presented in Poster Presentation III, Abstract #1137P, "Immuno-chemoablation of metastatic melanoma with intralesional rose bengal." The poster was presented by Dr. Sanjiv Agarwala, M.D., Principal Investigator for the Phase 2 trial of PV-10, and Chief of Medical Oncology and Hematology at St. Luke's Hospital and Health Network in Bethlehem, PA. The poster was authored by Dr. Agarwala along with co-authors J.F. Thompson, B.M. Smithers, M. Ross, B.J. Coventry, D.R. Minor, C.R. Scoggins and E. Wachter.

  • An Objective Response Rate (OR) of 51% in subjects' target lesions (25% Complete Response and 26% Partial Response);
  • 69% disease control in these lesions (combined Complete, Partial and Stable Response subjects);
  • 33% of subjects having an untreated bystander melanoma lesion achieved an OR in their bystander lesions while 50% achieved disease control in these lesions;
  • Response of bystander lesions was highly correlated with outcome in treated target lesions, with a bystander lesion OR of 61% in subjects achieving complete or partial response in their target lesions versus 18% bystander lesion OR in subjects that did not achieve this level or response in their target lesions;
  • Stage III subjects experienced a substantially higher target lesion response rate (60% OR and 79% disease control) versus Stage IV subjects (22% and 33%, respectively);
  • Similar trends were noted in response metrics for bystander lesions between these two subpopulations;
  • Analysis of temporal data showed that Stage III subjects also experienced significantly greater mean Progression Free Survival (PFS) of at least 9.7 months, versus 3.1 months for Stage IV subjects (median PFS for Stage III subjects was not reached during the 12-month study interval);
  • Overall survival (OS) data were also presented by disease stage, with Stage III subjects achieving a mean overall survival of at least 12.6 months (median not reached during the study interval) versus 7.3 months for Stage IV subjects.
  • Case studies on several subjects illustrated potential stasis or regression of untreated visceral lesions following PV-10 treatment of their cutaneous lesions, while data on long-term treatment of one study participant demonstrated successful management of the disease over a period exceeding 3 years.

Dr. Eric Wachter, PhD, Chief Technical Officer of Provectus and Study Director for the clinical trial, noted that, "These final analyses confirm previously reported trends from preliminary data. The high response rates for target and bystander lesions in Stage III subjects are particularly striking and illustrate the potential for PV-10 to benefit these challenging cases."

Dr. Agarwala, commenting on the reported data, stated, "These results further confirm the robust response that can be achieved with PV-10. This is particularly clear in Stage III patients where it is possible to inject all or virtually all of the patient's melanoma lesions. Despite the strict limits on dosing schedule in the Phase 2 protocol, many of the patients achieved excellent disease control or even complete remission. I find it quite remarkable that this included a number of subjects who experienced favorable response in their untreated skin or visceral lesions."

Stage III, Unknown Primary; 1 positive node in left axilla

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PV-10. Has anyone heard of this stuff? What is it?

http://www.dailyfinance.com/2012/10/02/provectus-pharmaceuticals-presents-final-phase-2-m/

KNOXVILLE, Tenn.--(BUSINESS WIRE)-- Provectus Pharmaceuticals, Inc. (OTC BB: PVCT, http://www.pvct.com), a development-stage oncology and dermatology biopharmaceutical company, announced that final top-line data from its Phase 2 clinical trial of PV-10 for metastatic melanoma were presented at the ESMO (European Society for Medical Oncology) 2012 Congress in Vienna, Austria on October 1, 2012. The data were presented in Poster Presentation III, Abstract #1137P, "Immuno-chemoablation of metastatic melanoma with intralesional rose bengal." The poster was presented by Dr. Sanjiv Agarwala, M.D., Principal Investigator for the Phase 2 trial of PV-10, and Chief of Medical Oncology and Hematology at St. Luke's Hospital and Health Network in Bethlehem, PA. The poster was authored by Dr. Agarwala along with co-authors J.F. Thompson, B.M. Smithers, M. Ross, B.J. Coventry, D.R. Minor, C.R. Scoggins and E. Wachter.

  • An Objective Response Rate (OR) of 51% in subjects' target lesions (25% Complete Response and 26% Partial Response);
  • 69% disease control in these lesions (combined Complete, Partial and Stable Response subjects);
  • 33% of subjects having an untreated bystander melanoma lesion achieved an OR in their bystander lesions while 50% achieved disease control in these lesions;
  • Response of bystander lesions was highly correlated with outcome in treated target lesions, with a bystander lesion OR of 61% in subjects achieving complete or partial response in their target lesions versus 18% bystander lesion OR in subjects that did not achieve this level or response in their target lesions;
  • Stage III subjects experienced a substantially higher target lesion response rate (60% OR and 79% disease control) versus Stage IV subjects (22% and 33%, respectively);
  • Similar trends were noted in response metrics for bystander lesions between these two subpopulations;
  • Analysis of temporal data showed that Stage III subjects also experienced significantly greater mean Progression Free Survival (PFS) of at least 9.7 months, versus 3.1 months for Stage IV subjects (median PFS for Stage III subjects was not reached during the 12-month study interval);
  • Overall survival (OS) data were also presented by disease stage, with Stage III subjects achieving a mean overall survival of at least 12.6 months (median not reached during the study interval) versus 7.3 months for Stage IV subjects.
  • Case studies on several subjects illustrated potential stasis or regression of untreated visceral lesions following PV-10 treatment of their cutaneous lesions, while data on long-term treatment of one study participant demonstrated successful management of the disease over a period exceeding 3 years.

Dr. Eric Wachter, PhD, Chief Technical Officer of Provectus and Study Director for the clinical trial, noted that, "These final analyses confirm previously reported trends from preliminary data. The high response rates for target and bystander lesions in Stage III subjects are particularly striking and illustrate the potential for PV-10 to benefit these challenging cases."

Dr. Agarwala, commenting on the reported data, stated, "These results further confirm the robust response that can be achieved with PV-10. This is particularly clear in Stage III patients where it is possible to inject all or virtually all of the patient's melanoma lesions. Despite the strict limits on dosing schedule in the Phase 2 protocol, many of the patients achieved excellent disease control or even complete remission. I find it quite remarkable that this included a number of subjects who experienced favorable response in their untreated skin or visceral lesions."

Stage III, Unknown Primary; 1 positive node in left axilla

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