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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jax2007gxp's picture
Replies 9
Last reply 9/27/2011 - 3:18pm

Hello all,

This past Tuesday I met with my surgeon regarding the surgery from a couple of weeks ago.  Based on the path results, I am Stage 3c. 3 positive nodes, 2 of which were matted.  Plus, the Cloquets node came back positive (after a negative result when frozen and tested while I was under in the operating room...the negative result caused him to skip taking out the deep nodes).  The Cloquets was positive for a 1mm spot in the middle of the node.  Of course, this worries me because the melanoma could have gotten to the deep nodes which remain in my body.  The doctor does not believe we need to go back in for the deep nodes because he believes it is unlikely the melanoma got past the Cloquets node since it is only 1mm.

I am being referred to the oncologist to begin treatment once I heal from surgery.  My concern is that the doctor told me that interferon is my only option because I am stage 3.  He told me that Yervoy and other options were for stage 4 patients.  Of course, I haven't heard this from the onc yet but I want to be prepared when I walk in the door.

Any feedback that may be helpful for my consult with the onc?

Many thanks,

Jacki

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LynnLuc's picture
Replies 4
Last reply 9/27/2011 - 12:36pm

I also saw Dr Weber and discussed going back to work. He thinks it's a great idea and says I am doing awesome. He also says I am ona good drug and feels very good and believes I will continue to have positive results...dare I hope! I have 2 more treatments and then I go to anti-pd-1 (MDX 1106) every 3 months....hoping to remain NED! Just wanted to share the news!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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CKasper's picture
Replies 9
Last reply 9/27/2011 - 11:16am

Hello to any one who reads this post.

I have been dealing with this disease since 1984.  My worst time has been since 2005 when I was staged III A or B.  I'm not sure because I have conflicting dr's notes.  At this point I don't think it matters.

In the years that followed I have gone through several surgeries and tried High dose interferon therapy which did not work for me as I had a very bad reaction from the immune drugs.

Last fall after getting out of the hospital for a serious heart problem, I was told I was cancer free....yeah, hurray!!!

Then my life really fell apart.  My husband left me, we are going through a divorce and my adult children hardly talk to me because they want to be neutral regarding the divorce.

I live in a very cold place in the winter and barely got through, I ended up in the hopstial I believe 3 times.

Every time I go to my internal med doctor he says I look good, and I just need to be positive and keep going.  I haven't had any body scans since last fall.  I had one for my head because I fell down the stairs (one of my hospital stays).

So since my "cancer free" delcaration, I have heart problems, falling problems, rash and welt problems, chronic pain problems, but I still got around, however I have noticed I have lost a lot of weight and my strength isn't what it was just 3 months ago.

About 10 days ago, I got welts, both arms became swollen, I have a hard time going to the bathroom, and on one night I got up and I felt I was going to pass out, this has happend a couple more times since then. 

I am eating when I have the strength to get up and fix myself something to eat. 

I have new pain in the right side of my body where all of this stupid disease started.  I am having a very difficult time taking care of myself.

I've been on and off this board over the years and I have read some pretty courageous things, but I think I am very tired of this disease and I think its back, and I think I'm going to let it take its course. 

I am frightend about getting up, and having the heart problem and passing out or dying.  Not so much the dying, but the lonliness and the fact that it would probably be days or weeks before anyone would say hey have your heard from her?

I'd like to say I do respect each and everyone's decisions on this board over the years, and I have seen great courage from those of you who ventured out and tried new things.

I'm tired of writing for right now and Wish you all good things and I'm going to try to do this every day, but the computer is upstairs and I' m not so good about being upstairs right now.  I do pretty much all my living on the first floor and sleep on the couch. 

So, thank you all for being an inspiration.  And hopefully I'll write and converse with you again soon.

I decided to post this anonymous.  However I am a Melanoma survivor of  27 years.

Peace be with you all, and hopefully the road to good health,

C

 

C

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mom3girlsFL's picture
Replies 6
Last reply 9/27/2011 - 5:21am

Silly question?

Stopped  self inj interferon back in Aug/Sept 2010 due to recurrence.  NEVER had issues with my teeth...until last week.  I was sneaking a bite of my  daughters cereal and BAM! a piece of my last upper molar came off!  Hmmm....

Did it spite me b/c I was sneaking a bite or could it be interferon related after 6 mths?  Or...maybe I'm just getting old - ha!ha!  Just curious.  I do have a dental appt on Monday morning - just ANOTHER doctor to add to the list!

Thanks for any help!

Laurie

PS - last dental appt was 2 yrs ago (was a little busy w/ mel since then), but had gone regularly.

Do not fear tomorrow, God is already there.

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Tim--MRF's picture
Replies 19
Last reply 9/26/2011 - 11:00pm

I received an email from a long-time, close friend of Nicole (NicOz) and she gave me permission to share the note.  I hope everyone who reads this understands how very important you are to each other, and how very meaningful your interactions are.  Here's the note:

 

Dear Tim

We have never corresponded, yet I feel I know you, through my friend known to MPIP as NicOz.  Through her journey I have often come to this board to share in some small way Nicole’s journey.

I am so very sorry to say that Nicole has died as you have no doubt read on the MPIP board.  Nicole either died during the night of Sunday 18 September or the morning of Monday 19 September.  I do not yet have those details.  As you can image her family are dealing with their grief. If you feel this email is worth sharing I am happy for you to do so. 

I wanted to write because I know how important this board and the brave generous people who shared their stories were to Nicole at times.  How it comforted her, informed her, saddened her, angered her, but always made her feel a part of a community, which we her family and friends could never really experience being on this side of the melanoma battle.

Nicole was a warm, loving, caring person, who struggled with this disease as others do.  Often, more often than not, she found it easier to deal with this journey with anger and an acerbic wit in public, masking a heartfelt grief and fear, which she could not express, even at times to herself.  Behind the scenes I know that there were many she wanted to support and did a wonderful job of it. Nicole was a tenacious little Foxie Terrier.  Her bark was always far more than her bite.  It helped keep her strong in this battle, focused and determined. At times also driven like a dog with a bone.

Many on this board, some still here, some who are resting, and some who are no longer in need, meant a great deal to Nicole.  I could name so many and yet I won’t just in case I forget a name or get one wrong.  I would like to think they know who they are. You were of course, one of them, Nicole held you in high regard. The journeys she listened to, the discussions she entered, the stoushes she once told me helped her feel alive, yet at others times hurt her because she was misunderstood.  I use to tell her stay away, don’t get so involved, and let it go, they don’t know you. 

Then for the past six months I have come to this board and engaged with many of the people here, feeling their triumphs, hurting at their setbacks.  The way that the people here offer solace and concern, they empathize and support as well as inform and rally and I understood why Nicole found it so hard to stay away, to not get involved, why she engaged. I never intruded into what I felt was Nicole’s space, although many times I was tempted, to encourage, or to empathize or to simply comment on a post not responded to.

Nicole has left a piece of herself with many of us, she is my son’s God Mother, was a best friend.  These are but a few pieces I will carry with me always, she has left many pieces of herself with me and mine.  But I think that she would have liked to leave a mark, a deep, and a little shared thought with those whose journey she has participated and shared in, the community no one wants to be a part of, but receives so much because they are.  She would deny it, she would have something ready and clever and self deriding to say, to cover her soft spot but I think it important to share that I think if she felt she could, she would say….

Be true to yourself, be kind to yourself, be kinder to others and be kindest to snappy tenacious little foxie’s fighting the battle. Good journey’s all whose path was at one time joined with mine.

 Donna

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/26/2011 - 8:19pm
Replies by: rbruce, Anonymous, FormerCaregiver, boot2aboot

Hi Boots,

 

I have been away from MPIP.

What treatment did youdecide to do?How is the treatment going?

Wishing you the best!

A.

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Replies by: jim Breitfeller, Anonymous

The T-cell-specific cell-surface receptors CD28, CTLA-4, ICOS and PD-1 are important regulators of the immune system. CD28 potently enhances those T-cell functions that are essential for an effective antigen-specific immune response, and the homologous CTLA-4 counterbalances the CD28-mediated signals and thus prevents an otherwise fatal overstimulation of the lymphoid system. PD-1 engagement can prevent ICOS but not CD28 costimulation. The inability of ICOS costimulation to override PD-1 inhibition is directly related to the low IL-2 levels it induces upon its engagement. ICOS Costimulation requires IL-2 and can be prevented by CTLA-4, PD-1 engagement. With the CD3/CD28 blocked downstream at the P13K and the Akt pathways, the T-cell is activated but the proliferation and survival of T-cells/immune response is terminated.

A picture is worth a thousand words.

Based on the above model, Downstream of the CD3/CD28 signaling the co-inhibitors down modulate the P13/Akt signaling. Signaling via CD28 is required for optimum IL-2 production, cell cycle progression, and survival. CD28 is constitutively expressed on naive CD4+ T cells is slightly upregulated after T cell activation.

 

The CTLA-4 and the PD-1 expression increase over time in Melanoma patients. This is why it is so very hard to eradicate Melanoma in the late stage IV.

To counteract the inhibition, one can use Antibodies to block the suppressive signaling coming from the CTLA-4 and PD-1. This is where Yervoy (Anti-CTLA-4) and Anti-PD-1 come into play. So if you can do a therapy with a systematic approach, you may be able to beat Melanoma.
It is now known, that IL-2 can down regulate PD-1 receptor so you might not need to do Anti-PD-1 therapy. Or you might do anti-PD-1 instead of IL-2 therapy to cut down the harsh effects of the IL-2 therapy. It is now known that the T-cell activation/immune response needs IL-2 to produce a robust immune response.

Best regards,

 

Jimmy B

Melanoma Missionary

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JudyinCA's picture
Replies 10
Last reply 9/26/2011 - 8:01pm

It's been a long time since I've been on this board, and it's gotten pretty high tech since the last time I checked it.  My husband Peter was diagnosed with stage IV melanoma in Oct 1999.  It was found first in his bowel, then in his brain, then a couple of years later in his chest.  The amazing thing is that he has been NED since  2001.  He has been working and in good health.  In 1999 when I read on this board that stage IV people were NED, I actually thought they were lying.  There is hope!

Peter would not have survived without two exceptional doctors.  His surgical oncologist is Leland Foshag, (John Wayne Cancer Institute and Angeles Clinic). His medical oncologist is Steve O'Day, who started The Angeles Clinic.  We were blindsided when we went for Peter's scans on Thursday and told that he is no longer with the practice. The Angeles Clinic will never be the same. He is irreplaceable.

Judy Clifford

Take charge of your treatment, and find the best doctors out there!

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ValinMtl's picture
Replies 15
Last reply 9/26/2011 - 7:45pm

Just to let you know that I have not forgotten about each and every one of you.   Days has been very difficult.  Keeping food down and trying to stop the aching from lymphedema.  I also didn't want to say anything too quickly.  I go for tests starting next Tuesday for 3 days and pray that I have  regression...then I will give a report.  I will be having a scan and results, very nervous, it looks pretty good but I don't want to celebrate too early.  Take care.  Val  xx

Live Laugh Love Nothing is worth more than this day!

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fgilbert63's picture
Replies 3
Last reply 9/26/2011 - 6:58pm
Replies by: fgilbert63, Anonymous, jax2007gxp

This is big, and could eventually cure many cancers. This article relates to breast cancer however the artical also speaks to how this has been a success with melanoma cells.

 

http://www.dailyglow.com/breast-cancer-cells-killed-in-lab-trials-0926.html

 

Here is another virus success story for Leukemia

 

http://www.pri.org/stories/health/genetically-tailored-virus-may-cure-leukemia5365.html

 

Hopefully pressure will be put on to get these moving fast, actually they should offer such treatments to any cancer patient who is willing to take the risk. They could still proceed with normal trials but let folks who are running out of options take part in medical science and participate in these new therapy revelations. The only way for this to happen is to get loud and demand it! 

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bcl's picture
Replies 7
Last reply 9/26/2011 - 6:40pm
Replies by: Donna, bcl, Anonymous, mombase, jax2007gxp, Donna M.

Governor Brown of California is considering whether to sign or veto hundreds of pieces of legislation. One of these bills is SB 746, a teen tan ban for under 18's 

For those so inclined, please send a message of support for SB 746 before 10/10 

And please don't hold back if you live outside of CA   -skin cancer is a global issue and you can bet industry will not have the same reservations. (We had spokespeople from the US flood our teen tanning hearings in Canada.) These hard fought precedent setting laws are needed to raise skin cancer awareness and save lives.

Thank you, linda

 

email

http://gov.ca.gov/m_contact.php

snail mail

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

Fax: (916) 558-3160

 

 

http://www.thereporter.com/opinion/ci_18960570

 

Sign the tanning bill, Guv

Published by The Reporter
Posted: 09/23/2011 01:05:23 AM PDT

 

Consider this familiar storyline: A common, nonessential, human activity is revealed with certainty to harm or kill repeat users. Modest measures get proposed to regulate the activity and protect individual and public health.

The industry that has grown large by promoting the activity, however, is trying to derail the proposed regulation. They say the science isn't conclusive and, besides, individuals should be able to choose for themselves what to do ("Veto tanning bill," Sept. 17).

We could be talking about smoking. Instead, we're talking about the use of indoor tanning beds, which has been conclusively shown to cause melanoma and other cancers. Senate Bill 746 is a common-sense approach to prevent indoor-tanning salons from offering their services to minors.

Under SB 746, anyone 18 and older can absolutely still use tanning beds (and they can buy cigarettes afterward, if they wish). But the principle behind the bill is that the use of indoor tanning beds is risky and the results can be fatal, and so the choice to use them should be -- in every sense of the term -- an adult decision.

As one might guess, SB 746 is being fought aggressively by the indoor tanning industry, represented by the Indoor Tanning Association. Their claims -- that the science is inconclusive and that 15-year-olds know best -- could easily have been borrowed from the tobacco industry during the second half of the last century. But their claims need refuting, which is not difficult to do:  The scientific evidence that tanning beds kill is airtight. Multiple studies have specifically confirmed the direct causal connection between indoor tanning beds and deadly skin cancer. These studies have themselves undergone meta-analysis from the International Agency for Research on Cancer, which has classified the radiation from tanning beds as "carcinogenic to humans." A 2004 study in England found that 25 percent of the melanomas found in young women owed to the use of tanning beds.

In 2009 the World Health Organization classified tanning beds as a Level 1 carcinogen, the same as plutonium and cigarettes. The U.S. Department of Health and Human Services and the Food and Drug administration have added tanning beds to their lists of dangerous carcinogens. The house of medicine uniformly agrees tanning beds cause cancer. The American Academy of Pediatrics recommends prohibitions like that in SB 746, which is sponsored by the California Society of Dermatology and Dermatologic Surgery and the Aim at Melanoma Foundation. Health insurers such as Kaiser Permanente and Anthem Blue Cross also support the tanning-bed ban proposed in SB 746. More recently, a Stanford Cancer Institute study in March shows that skin-cancer rates among girls and young women from high-income ZIP codes have doubled in the past 20 years.

* We don't let children smoke cigarettes or buy vodka with parental consent. Current law allows 14- to 17-year-olds to use tanning beds with parental consent, the rationale being that parents can be expected to better understand the risks than do their kids. The parental consent rule, unfortunately, is inadequately enforced. Some forms provide little information beyond space for a signature. In other cases, consent forms can portray "sunburn" as the major health concern rather than malignant cancer. And parents with questions about health and safety are typically on their own, as no specific training in health risks is required of salon employees.

* There is an alternative to tanning beds. There is a safe, effective alternative to tanning beds that many tanning salons already offer: commercial spray tanning. This tanning is growing in popularity, and celebrities such as Snookie of Jersey Shore have switched to spray-tanning. SB 746 is less a threat to tanning salons than an opportunity to serve valued clients in a safer, more responsible way.

Because of the incontrovertible medical evidence linking tanning beds directly to skin cancer, several countries in Europe such as France and England have banned tanning beds for anyone under 18. Brazil has banned tanning beds completely for all ages. In the United States, 30 states have some restrictions on teen UVR tanning. Texas is the most progressive, with a tanning-bed ban for anyone under 16 1/2. New York, Illinois, Ohio and Rhode Island currently have bills in progress similar to SB 746.

It is time we follow where the evidence takes us and urge Gov. Brown to sign a public-health bill that has enjoyed bipartisan support. We in California must act now so that someday we won't have to regret the suffering and loss of life that occurred after we already knew better.

State Sen. Ted W. Lieu, Torrance

Dr. Isaac Neuhaus, San Francisco

Sen. Ted W. Lieu, D-Torrance, represents nearly 1 million Los Angeles-area residents. Dr. Isaac Neuhaus, is a board-certified dermatologist at University of California, San Francisco's School of Medicine and president of the California Society of Dermatology and Dermatologic Surgery. For more, visit www.senate.ca.gov/lieu.

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justlittleoleme's picture
Replies 10
Last reply 9/26/2011 - 5:58pm

Hi, my hubby was recently rediagnosed with Melanoma. 

His original melanoma was diagnosed on 2/15/05 and he had a wide area excision on 3/29/05 with a sentinel lymph node biopsy.  At that time, no further treatment was recommended and he has been NED since that time.  He was classified as Stage 2A.

His recurrence is at the original location in the parotid.  The tumor is 27mmx26mmx30mm.  They are staging him at Stage 3 prior to surgery.

We are scheduled for a parotidectomy with facial nerve dissection, nerve graft and neck dissection on 9/23/11 at the University of Michigan Ann Arbor.  Our local cancer center (which we have loved) is unable to do the surgery due to the invasive nature.  The oncologist is advocating for just radiation after the surgery.

My question is this:  Should we be looking at further treatments? Clinical Trials?

We have another consult scheduled with Dr. Logan at the IU Simon Cancer Center on 9/19/11.

Thanks for your insight!

We don't know how strong we are until being strong is the only choice we have.

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dearfoam's picture
Replies 6
Last reply 9/26/2011 - 4:53pm
Replies by: dearfoam, Anonymous, Charlie S

Went in to find out if dad's tumors tested positive so he could try Zelboraf, and after 3 weeks of waiting, they told us the tissue sample was insufficient. Doc thought there might be a chance we could get some Zelboraf and see if it does in fact have an effect, thereby confirming without another biopsy. I doubt Roche will do that for us since it would have to be through their patient assistance program.

So in the meantime dad will continue Temodar, which is only slightly effective - 2/ 20 or so tumors shranks some (brain), while 2 of 2o grew (on spleen and colon).

Dr thinks we will probably have to biopsy a brain tumor. All I think about is how the original biopsy in April landed him in the hospital for over a week witha collapsed lung. Ugh. Don't even want to know what can happen to the brain.

Wait, wait, wait - it's all I seem to do.

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This is big, and could eventually cure many cancers. This article relates to breast cancer however the artical also speaks to how this has been a success with melanoma cells.

 

http://www.dailyglow.com/breast-cancer-cells-killed-in-lab-trials-0926.html

 

Here is another virus success story for Leukemia

 

http://www.pri.org/stories/health/genetically-tailored-virus-may-cure-leukemia5365.html

 

Hopefully pressure will be put on to get these moving fast, actually they should offer such treatments to any cancer patient who is willing to take the risk. They could still proceed with normal trials but let folks who are running out of options take part in medical science and participate in these new therapy revelations. The only way for this to happen is to get loud and demand it! 

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/26/2011 - 3:10pm
Replies by: MARTERWAG, MariaH, Charlie S, Anonymous, mombase, momof2kids, Tim--MRF

Hi,

 

I would appreciate any information about qualifying for SSDI in California?

I have been stage 3c since 2009. As of September 19, 2011, I am now Stage 4 with mets on lung, suq in leg & chest.

Now that I am stage 4, do you automaticallly qualify for SSDI once my doctors complete the paperwork confirmating my diagnosis of Stage 4??

I had surgery on my leg, in June 2011, and have been recuperating. At the time ofthe surgery, I was stage 3, then on Sept 19, 2011, my scans indicated progession to stage 4.

What would the effective date be that I could qualify for SSDI? How long does it take to get SSDI??

Thank you for replying to my post.

Betty

 

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