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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JerryfromFauq's picture
Replies 5
Last reply 10/1/2011 - 2:56am

Two interesting articles that shows how the Genome Project has affected cancer research.  The following is just a brief excerpt from the longer articles.

1. http://www.time.com/time/specials/packages/article/0,28804,2075133_20751...

http://defeatosteosarcoma.org/2011/06/cracking-cancers-code/

Eager to put genotyping into practice, doctors at MD Anderson and Massachusetts General Hospital, among others, have already begun using sequencing technology to guide treatment of patients in clinical trials. Even without the full genome map of certain cancers, clinicians are using known mutations linked to cancer to dictate which drugs patients receive. In MD Anderson's program, all lung-cancer patients are offered the chance to join a trial in which their tumors are genetically analyzed for some well-known genetic defects thought to play a role in cancer. About 15% of lung cancers, for example, show mutations in a gene that makes a protein critical for cell growth. Patients with this aberration can enroll in trials in which FDA-approved drugs targeting that mutation are being tested as a first-line therapy, instead of chemotherapy, for treating their disease, giving them a head start in gaining any benefits the drugs might provide. (At the moment, these drugs are approved only for patients with advanced cancer for whom other therapies have failed.)

Cancer experts aren't naive enough to believe that sequencing a tumor just once will reveal all they need to know. Cancer is constantly changing its offensive and defensive plans in response to whatever treatments doctors are using against it. The idea is to rebiopsy patients periodically and allow the dynamic genetic changes in the tumors to educate doctors about how aggressive the cancer is, whether it has developed resistance to drugs and even whether it has spread. "The concept is to let the tumor teach us how to treat patients," says Dr. Waun Ki Hong, head of cancer medicine at MD Anderson.

It's all part of the leap toward personalized cancer care, the therapeutic beacon toward which researchers and doctors have been navigating for a long time. "We fully expect that 10 years from now, each cancer patient is going to want to get a genomic analysis of their cancer and will expect customized therapy based on that information," says Brad Ozenberger, TCGA's program director. Only with more individualized therapies that match the right treatment with the right patient at the right time will the battle ultimately be won.

2.  http://www.sanger.ac.uk/about/press/2009/091216b.html

16th December 2009    Malignant melanoma genome contains 33,000 mutations

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

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King's picture
Replies 25
Last reply 10/1/2011 - 1:04pm

I know we all need to read some good news to balance the bad and sad news that is a reality on MPIP.

I am thrilled to report that I just returned from Moffitt and I remain NED at Stage IV.  My profile is up to date and I'll give a brief summary when I sign off this post.

Yes, I've had ups and downs like so many of us.  Yes, I have some discomfort from the extensive surgeries.  I have challenges with maintaining my weight.  Right now I have a rib fracture that was diagnosed on the scan.  But I am NED.  I wish there was a secret to share.  I know many of you are deep in battle and have to be so discouraged.

It was 6 years ago yesterday that I had my liver resection...70% of my liver was removed.  I was told at that time that if the surgery was not a success (or any of the very limited treatment options back then) that I had 4-6 months to live.

And I now can go 4 months until my next set of scans.

Thinking of all of you.  If I can help in any way, please email me.  Thank you so much for all the support you've given and knowledge you've shared over the 7 years that I now have been on MPIP.

Stay Strong

King/Kathie

March 2004  Stage III Unknown primary

April 2004 Left groin lymph node dissection.....NED

May 2004-April 2005 Interferon

July 2005 Liver mets (3.3 cm. Grew to 4.5 cm at time of surgery)

September 2005 Liver resection/Gall Bladder removal....NED

December 2005-November 2006  Phase II Clinical Trial of GM-CSF

March 2008  Peri-Pancreatic Tumor; sub q on left hip/buttock

April 2008 Extensive surgery to remove both areas of mets....NED

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emilypen's picture
Replies 9
Last reply 9/30/2011 - 8:42am

Hi All,

So today we found out the results of Jason's 12 week scans.

Not good, the Dr. said most of his tumours have doubled in size. What is so confusing for us is that some of his sub q tumours have disapeared and others are flattening out and getting smaller. But he has at least

Jason has already been on P13k/Mek inhibitors, Braf inhibitors, Dacarbazine and now IPI. He is not healthy enough to qualify for IL-2 therapy.

Essentially we were given 3 choices;

1. Wait and see if he is a late responder to IPI scan again in 4 weeks and then in another 8 weeks after that.

2. Start a combination chemo on Monday  ( Carboplatin & Paclitaxel) See how he does with side effects and response.

3. stop treatment ( life expectancy less than 4 months)

There is an Anti PD-1 trial possible coming availble in the next few months that if he's healthy enough he may qualify for.

The Dr. said the chemo regimen would not effect the possible continuing effects of the IPI.

 

I think our main objective is keep him alive with a  good standard of living at least until our baby is born in Febuary. More time than that would be a gift.

Thoughts? Ideas?

 

Something we may be missing?

 

thanks,

Em

 

 

 

 

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boot2aboot's picture
Replies 7
Last reply 10/14/2011 - 12:26am

I don't know if anyone on this board knows or reads Dr Mercola's blogs...but these last few weeks he has been running stories about Dr Burzynski and how this doctor's drug trial studies got axed by NIH...his study was about certain peptides...whatever...anyway, i hate it everytime there is some sort of 'conspiracy theory'...because it is upsetting to hear people run their mouths about being a 'possible' cure for cancer that was denied by the government because of jealousy, idiocy, whatever and cancer victims missed the boat...

i used to like reading mercola but i am beginning to think THIS guy is a HOAX...and very irresponsible...i would think if there is ANY validity  in regards to burzynski, a drug company would be NUTs not to buy the patent...cures are BIG MONEY...just look at the cost of yervoy...but then again, desperation makes one doubt and doubt....

don't back up, don't back down

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mommymel06's picture
Replies 5
Last reply 10/1/2011 - 3:19am

I am at high risk for melanoma.

 

History of bad sunburns and over 100 atypical moles. I do not expose myself to the sun anymore...Meaning I COVER UP! Even on 100 degree days, but I have read the "damage has been done" because the burns occured when I was young.

I see the Dermatologist twice a year for a mole scan. However, in the past five years, I have only had four moles removed. All were normal, aside from an atypical mole.

If you were to look at me, you would think that I had melanoma...Seeing as I have so many moles which fit the ABCD discription, I am worried the derms (I usually see two each visit) are missing something. However, the doctors say they're all OK. Even one that recently elevated and got lighter (did not change, shape or size) they said was OK....And I got three opinions.

I know early detection is huge....But I am afried with all these moles, derms will never be able to distinguish between normal and melanoma.

 

Do you have any advice for me?

Melanoma is such a hard cancer to cure....And it terrifies me.

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Donna M.'s picture
Replies 4
Last reply 10/6/2011 - 8:25pm

Is anyone going to the symposium on Saturday?

Peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart. (Unknown)

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sss's picture
Replies 4
Last reply 9/29/2011 - 2:46am

Just finished 2nd month of Zelboraf treatment. Appointment with oncologist went very well. Labs are still improving and several subq tumors are no longer palpable!  Scans set for end of 3rd month of therapy as was set up by the clinical trial protocol. Have received 3rd month commercially from specialty pharmacy without issue, since trial now ending.

Remaining hopeful and positive that results continue to be positive

sss

Life goes on as usual. There is no other way.

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When it rains, it pours!!!! Melanoma patients over the last twenty years have not seen any progress in the fight to cure Melanoma. That has all changed in 2011 when the FDA approved Yervoy (Ipi..Ipilimumab), an anti-CTLA-4 monoclonal antibody and Zelboraf (vemurafenib). Well, this all going to change Melanoma from a cancer to a chronic disease that may be stabilized or even cured. The new Kid on the block( PD-1) is another Surface molecule that is unregulated when the T-cells are activated. This molecule is time dependent , which means that over time it migrates to the surface. Base on the research today, PD-1 molecule causes global inhibition to activated T-cells and down regulates the IL-2 expression by the PI3K/Akt pathway. It also inhibits the ICOS molecule that is an important co-stimulator for the T-cells.

So with stakes high to be the first to market, Bristol Myer Squibb, a little known company, Amplimmune, co-sponsored by GlaxoSmithKline and Curetech, a subsidiary of Teva Pharma of Israel are in the race of their lives. Winner takes all. And to throw Icing on the cake, the blockage of both inhibitors (PD-1 and CTLA-4) have shown remarkable ability to eradicate Melanoma tumors in mice.

Bristol Myer Squibb seems to be leading this race with a clinical trials recruiting at Sloan Kettering in New York and Yale in Connecticut.

The study is “Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV Malignant Melanoma”
Trial: NCT01024231

So with this in mind, if was seeking to try a clinical trial at time, I would seek out the combination first, then PD-1 and if all else fails, Anti-CTLA-4 therapy followed by IL-2.

I see a Stabilization/Cure on the horizon for this disease and others based on these immunotherapies.

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”
~Charles Darwin~

Take Care,
Jimmy B


 

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Gene_S's picture
Replies 4
Last reply 9/28/2011 - 8:22pm

My husband is going for his 30 week scans on Friday and we are praying for more regression or better yet NED.  Will update when we get the results on Friday.

Judy (loving wife and caregiver of Gene

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

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piii's picture
Replies 12
Last reply 9/29/2011 - 7:20am

New to this site and to tell you the truth I never talk on boards but I never thought I would have cancer. I was diagnosted on 7/21/11 with a depth of 1.45mm no ulceration. I had the node bi and left arm pit was pos. I am waiting for my drain to be removed after having 41 lymph nodes removed from my left are pit. The drain has been in for 4 ½ weeks and can’t wait to get it out of me. Looks like Friday. One node came back with melanoma but the doctor said it was extranodal extention present.  My question is should I push for Radiation. I see from the board that melanoma is resistant to radiation but I am concern about cancer cells “floating” around and finding an organ. Also they tell me the risk for recurrence is higher because of extranodal extention.  Is that the case? Also I do plan to start interferon as soon as the drain is out. I am a young man at 41 and want to do everything I can to fight this. Anyway thanks for reading.

Peter

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mwilson's picture
Replies 1
Last reply 9/28/2011 - 9:09am
Replies by: Anonymous

Hi,

I'm new and hate to meet you all this way.  I was diagnosed as a Type II diabetic last July 2010.  This July 2011 I had a mole on the back of my calf looked at by  a dermatologist and after excision and biopsy, found it was melanoma.  Since it was deep, I then had a WLE and a SLNP with finding of one micro metastis.  Well, so much for happy news in the month of July!

I'm Stage IIIa. I've just had a brain MRI and will have a CT/PET tomorrow and then meeting with the oncologist next week.  He is setting up a referral for me with UofA AZ Cancer Center in Tucson.  Dr. Cranmer. 

The surgeon has recommended that the rest of the lymph nodes be removed.  My hesitancy lies in the fact that my mom had lymphadema and I fully understand the problems managing it.  I did find a meeting at the Phoenix Wellness Community next week that focuses on lymphadema so will go there open minded and increase my knowledge.  I'm just not sure of having the surgery. 

The oncologist and I have talked about 4 weeks of interferon.  My question is - is there any problem with taking metformin and interferon that anyone knows of?  The doctor was looking on line and could not find a reference. 

We are thinking that I just monitor my blood glucose more closely than I usually do.  I don't have a problem with high reading - I'm kind of middle of the road but under decent control with an A1C of 6.4.

Thanks for all the information that you put on this board.  It has surely made me more educated.

Michele

 

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mwilson's picture
Replies 5
Last reply 9/29/2011 - 5:04pm

Hi,

I'm new and hate to meet you all this way.  I was diagnosed as a Type II diabetic last July 2010.  This July 2011 I had a mole on the back of my calf looked at by  a dermatologist and after excision and biopsy, found it was melanoma.  Since it was deep, I then had a WLE and a SLNP with finding of one micro metastis.  Well, so much for happy news in the month of July!

I'm Stage IIIa. I've just had a brain MRI and will have a CT/PET tomorrow and then meeting with the oncologist next week.  He is setting up a referral for me with UofA AZ Cancer Center in Tucson.  Dr. Cranmer. 

The surgeon has recommended that the rest of the lymph nodes be removed.  My hesitancy lies in the fact that my mom had lymphadema and I fully understand the problems managing it.  I did find a meeting at the Phoenix Wellness Community next week that focuses on lymphadema so will go there open minded and increase my knowledge.  I'm just not sure of having the surgery. 

The oncologist and I have talked about 4 weeks of interferon.  My question is - is there any problem with taking metformin and interferon that anyone knows of?  The doctor was looking on line and could not find a reference. 

We are thinking that I just monitor my blood glucose more closely than I usually do.  I don't have a problem with high reading - I'm kind of middle of the road but under decent control with an A1C of 6.4.

Thanks for all the information that you put on this board.  It has surely made me more educated.

Michele

 

 

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trishahimm's picture
Replies 14
Last reply 10/12/2011 - 5:08pm

Hi all,

I have a couple of questions for the panel of pros here. 

Overview:

My dad had a very large and deep ulcerated melanoma tumor on the bottom of his foot with metastasis throughout the groin with "invasion " into the lymph and blood vessels. They had to wait until the surgical sites were healed before starting the radiation on the foot and groin for 8 weeks and then interferon for a year. That was the treatment plan they laid out for him just after his surgery about 8 weeks ago. So finally he healed and started radiation about 2 weeks ago and last week he noticed 4 new rapidly growing spots on his foot. The surgeon cut them out and they will not have results until tomorrow or Thursday but the surgeon and oncologist are positive this is more melanoma. He will be going in for new scans soon.

My dad's question: do the new tumors start from deep in his foot and then grow up to the surface? He is thinking that because the original tumor was 11 cm deep, these somehow started down deep and then have worked their way up. I don't think this is the case, but I don't really know. Does anyone know? I told him to ask his oncologist as well.

My question: is this really soon for a recurrence? This seems pretty aggressive to me when there were no signs of additional cancer in the foot just 3.5 months ago when they originally did surgery on the foot and to have 4 pop up and then double in size within a matter of 5 days.

Any feedback or comments would be appreciated.

Thanks,

Trisha

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Jewel's picture
Replies 15
Last reply 9/28/2011 - 8:38pm

 Hi there,

My husband has been recuperating from a ELND and Skin graft with WLE, while he has been doing well with recovery we are now faced with alot of decisions which I have seen alot of you wonderful people have to make.

We will be going to Sloan Kettering for a 2nd opinion and to hear what they might have to offer. We have done nothing other then surgeries.

My husband is a firm believer in keeping his body and his mind strong....putting all these chemicals in his body when he is showing NED at the moment is hard for him to swallow.

I would appreciate hearing from all you survivors who have had positive nodes and what personal choices you made for yourself. I know everyone responds different and melanoma grows differently in all of us.

Scared and Confused, even though I would never let my husband know that. He has been amazing through all of this.

Thank you,

Jewel

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Newmom's picture
Replies 1
Last reply 9/27/2011 - 3:29pm
Replies by: Newmom

My understanding is CT scan is more accurate in measuring tumor size.  Any thoughts?  I am seeing a difference of almost 3 cm in length with the 2 tests – CT scan is bigger in this case.

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