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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ValinMtl's picture
Replies 6
Last reply 11/18/2010 - 12:46pm

Well, I did a beautiful wipeout in front of the hospital, tripping on my shawl...hitting my chest on a jutting out cement pillar, then landing on the knee, of course the monster leg with lymphedema. I certainly had loads of attentive people around me, embarrassing plus! As I was falling all I could think of was please don't cause any delays in treatment but I was able to make it to the oncology ward in a wheelchair!. So I sit here very sore today.

Had my 4th treatment yesterday.  The good news, doctor is seeing a noticeable difference in the tumors, some are actually drying up and the purplish motling on the leg is diminishing, now I have to wait for a scan.  I almost didn't get the treatment as my platelets are very low but since it was my 4th treatment and not 3rd the doctor decided to go ahead with it (he warned me no falls, no aspirins)...will now have to visit CLSC about a mile from my house for blood tests each week until platelets improve (beats travelling to the hospital which is about a 1 1/2-hour drive).

Now my question for the ipi warriiors: I have now had 4 treatments,and a scan in 2 weeks and another scan 12 weeks after that, at that point they decide whether there is a need to continue, or not (wouldn't that be nice) OR of course, if it doesn't work then on to another treatment.  There is a 3-month wait between ipi rounds, is this the norm?

So, just to update those planning on ipilimumab..cutaneous tumors have certainly stopped spreading on my leg (I had 100s after waiting about 5 months for trial to come to Montreal), most are not raised but rather 'flat' now, and some are dried up (yehh!). Praying I get good results with my scans. I really haven't had any significant side effects, a few slight headaches in the beginning, a touch of fatique and inappropriate gas.

 

Val

Live Laugh Love Nothing is worth more than this day!

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Laurie from maine's picture
Replies 7
Last reply 11/17/2010 - 11:41am

hi,

I had hoped to go to the melanoma symposium last night but couldnt make it down from Maine.  Did anyone go?  I really like Dr Lawrence and Dr Hodi and would be interested to hear how it went and if any new info was brought up.  I was also hoping to run into people from this site, oh well.

thanks

laurie from maine

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MaryMary73's picture
Replies 17
Last reply 12/23/2010 - 2:22pm

I live in Canada (Toronto to be exact) so our health care system is quite different from the US. The actual medical care in Canada is basically the same as in the US but we are not charged for any medical procedures or surgeries (including staying in the hospital for any length of time, medications received during the hospital stay, etc etc) that we have done (unless it is cosmetic). We do pay for our own medications but for those of us who have insurance coverage through our employers, we are usually covered from 80% to 100%.

In the US, I know it is very different. What happens if someone suspects he or she has melanoma and they do not have insurance coverage? How much would it cost for a visit to a family doctor? A dermatologist? A biopsy to see if a suspicious looking mole is melanoma? Surgery to remove healthy skin around the melanoma (once diagnosed) in order to attain clear margins?

Maria

The only real wisdom is knowing you know nothing -Socrates

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jnaakins's picture
Replies 9
Last reply 11/17/2010 - 9:10pm
Replies by: Janner, Anonymous, jag, jnaakins

I am asking because I recently had a large melanoma in situ removed. I am more than usually concerned because I lost my brother in February to Melanoma. I know the statistics say that the "cure" for melanoma stage 0 is surgical removal, but Im wondering what the odds are of it coming back, with my family history?

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killmel's picture
Replies 2
Last reply 11/17/2010 - 11:38am
Replies by: Anonymous, bcl

Hi Linda,

 

Any update on how Cass is doing. We all responded a few months ago whe she need help. Would appreciate know if our prayers are working for her.

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Springbok's picture
Replies 3
Last reply 11/16/2010 - 12:19pm
Replies by: Lori C, dian in spokane, Anonymous

I went to a talk here in Calgary, a few weeks ago, in which the Gerson approach to health and curing cancer was promoted. SInce then , I have found a number of other clinics in Europe, Mexico and North America (eg. the Hippocrates Health Institute in Florida) which practice similar "treatments" - usually lots of natural juice, strict diets, and enemas aimed at purging the body of toxins and cancer cells (or starving the cancer cells).

The Gerson Institute, in particular,  makes some specific claims about improving the prognosis of those with Melanoma. However, there are a number of rebuttals of their claims on the Internet from the established medical profession , including teh American Cancer Society.  These note that none of the Gerson claims have been proven by peer reveiw or experiment.

No doubt these clinics charge an arm and a leg for treatment, with questionable results (though a fresh juice diet can't hurt).

I wonder if the board members have any personal experience with these clinics, because drinking a glass of fresh juice every hour sure sounds  preferable to  engaging in "chemical warfare" and surgery that the cancer hospitals of the world promote?

 

Springbok

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davekarrie's picture
Replies 1
Last reply 11/20/2010 - 11:00pm
Replies by: kellie1979

After reading my path report a bit more, the initial stage is set at Ib, T2a with no info yet on N or M.  Therefore, there is a good chance that the melanoma did not spread, right?   I go to mayo clinic next week for consult on 24th and surgery on 26th.  I do have a few more suspicous moles they will need to look at though, but the more I read about stage I the better I feel.  My path report does mention occasional mitosis, so not sure what that means. I am also at Breslow depth 1.5mm and clarks 4. thanks.

Live life to the fullest and enjoy each day!

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Suzan AB's picture
Replies 3
Last reply 11/16/2010 - 8:12am
Replies by: Suzan AB, Dynasysman, Fen

Waiting sure does suck the big one.  I believe it is one of the major stressors for me, the not knowing...Here's the deal.  Waiting for confirmation that the nodes or I should say tumors in my right lung have doubled in size and  had uptake are melanoma (please tell me it was a mistake).  Seeing Dr. Daud next tuesday for options.  I was hoping to hear from someone yesterday, but alas the PET scan disc was sitting on someone's desk.  UGH!  I was hoping to get whatever out before Dec. 1 when my deductible goes up to the astronomical amount of $10,000.00.  yes, you read that right. 

Going though loads of emotions at the moment...

Suzan AB

Stage IV

Presently...One Day At A Time.

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rj's picture
Replies 7
Last reply 11/21/2010 - 3:18am
Replies by: rj, djpayn, lhaley, Jim in Denver, TAC, Janner, Anonymous

Ron has had a 3 mm spot on his lung ever since the original scan in March of 2009.  We were told at the beginning (not by our melanoma specialists) that it was NOT melanoma.  At his follow up appt with the surgeon last week, one of the doctors said it COULD be; hence the watching.  My question is this----wouldn’t it show uptake on the scans if it were melanoma, and can melanoma just sit without growing for a long time?  If anyone has had similar circumstances, I’d appreciate information.  Thanks--Betsy 

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CaptAaron's picture
Replies 22
Last reply 11/19/2010 - 12:11pm

Good evening fellow warriors.  Just wanted to introduce myself to the board and see if anyone can shed some light on a treatment option I'm facing.  I'm a 31 year old father of 2 boys.  I'm active duty Air Force stationed at NASA's Johnson Space Center in Houston, TX and I'm a marathon runner.  I was diagnosed in July of this year (2010) with a 1.15mm spot on my upper left back.  A WLE and SNB later revealed clear margins and one of three lymph nodes removed showing a microscopic level of melanoma present (<10cells in a 1cm diameter sample according to the pathology report).  I then went on to get additional surgery at MD Anderson.  The surgeon removed 22 additional lymph nodes on my left side and all were clear.  CT/PET/MRI's all clear of any metastatic disease.  Since my diagnosis I've made incredible lifestyle changes to include going vegetarian except for fish occasionally, cut out all carbonated beverages, caffeine, alcohol, diary and most anything that isn't organic.

 

My medical oncologist recommended two potential paths for treatment.  One was a pegylated (sp) Interferon trail which was dependent on whether I had a specific genetic tissue type.  Blood tests revealed that I did not, and therefore the other treatment recommended was the standard Interferon regimin of 4 weeks HD and 11 months self injections.  I completed the 4 weeks of IV treatment not last Friday, but the Friday before.  I mus say that it was quite miserable most of the time and the depression effects hit me hard.  I've been trying to work as much as possible, but I'm also getting the "chemo brain" effects and dealing with that at NASA is not the best thing to have happen either.  Headaches, depression, fatigue, bad tasting food are all very real side effects for me, and I'm not liking the idea of continuing this for 11 months.  My oncologist is definitely leaving the option up to me, and doing a good job of explaining the minimal benefits of Interferon to me, stressing that it is a patient choice.

 

So my question is kind of an obvious one...what do you all think would best in this situation?  I'm all for fighting cancer and fighting hard, but the costs have to at least equal the benefits, and it doesn't seem like there's strong evidence out there to help that case.  As I sit here and type this even my head is throbbing and I feel like melting into my chair from exhaustion.  I like the idea of counting on the 4 weeks of IV treatment to be "good enough" and the 11 months of additional treatment to be the "enemy of good enough"...but is that the case?  I know it's a dilema that's been debated on this forum before, but I thought I'd re-introduce it, along with myself.  Thank you for your inputs and your time fellow warriors.--Aaron

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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bcl's picture
Replies 5
Last reply 11/17/2010 - 2:00am
Replies by: bcl, Anonymous, kwahlbin, glewis923, lhaley

And if you are reading this, please also plan to advise us in future (on both boards) when you are changing something as significant as the site URL  - I  gave the old one out to a stranger and am not sure now if she will ever find the support she needs.

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Charlie S's picture
Replies 6
Last reply 11/16/2010 - 8:42pm

Some time ago, when this was MPIP, an upstart Don W started a website that to this day isstill maintained by him  hosted by Coleen, a melanoma survivor that runs an internet hosting company where people submitted photos of people and events relative to melanoma who chatted here and met one another.

It's worth a look to understand the history and community that existed because it matches names with faces.

http://melasuckanoma.com

 

Charlie S

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Melanoma Mom's picture
Replies 29
Last reply 11/17/2010 - 10:18am

My 14 year old very athletic son was recently diagnosed with melanoma. In the Spring I noticed that he would shift around a lot in the car, trying to get comfortable. After finding a bloody discharge in his boxers, I asked my husband to have a "guy to guy" talk with him, thinking it was hemorroids. He told his Dad that he had a "wart" hear his bum and just assumed it would go away. We had our Pediatrician look at it. He agreed it was a wart, but because of its size and location near the anus, he referred us to a Dermatologist. The Dermatologist agreed it was a wart and that he would freeze it over 2-3 visits. The first freezing was in late July and then another two weeks later. When we returned to do the third treatment, the Derm. suggested we do a biopsy to see what virus we were dealing with, as it wasn't shrinking. He assured us he wasn't worried and certainly was not thinking it was cancer. 10 days later he called us from his home and said that he had never in his 25 years of practice been so shocked to get a diagnosis like this on an adolescent and that he had the lab double-check that they hadn't confused slides. He recommended we get follow-up care in Boston as soon as possible (we live in Maine).

We met with Oncologists at Dana-Farber and a surgeon at Children's Hospital soon afterwards. While their Pathologists had not found the biopsy to be definitively melanoma, we all agreed that the "wart" needed to be removed. In the meantime, the biopsy was sent to various specialists around the country as well as Paris. It was also decided that two other spots that popped up in July, one on his inner arm and one on his torso, that originally looked festered would be removed. These had also been frozen by the Derm. so they weren't able to tell the original formation. There was also a strange colored spot on his outer arm that had been there 10+ years that had the Dermatologists at Children's completely stumped. 

The surgery took 4 hours and he was released that day. The surgeon felt things went very well and he got clear margins. We returned the following week to learn that the "wart" had definitely tested as melanoma. The two spots from July were pre-melanoma (can't remember the medical term for that) and the 10+ year old spot was benign. Next up was PET/CT/brain MRI. Those all returned clear of tumors,  thank GOD. 

Two weeks ago a SNB was performed and they took 4 nodes. Again, our son was amazing and left for home the same day. This Thursday, November 18, we will receive word as to whether the cancer has spread to his nodes and what they suggest for treatment.

We continue to be shocked by this terrible turn of events. Our son is so bright (attends a private prep school), plays three seasons of sports and also rides his bike long distances - Maine to Quebec in two weeks this past summer. He feels, acts and looks the same as always. We have no family history of melanoma and believe me, the sun has never shone on his anus! None of our children have ever had a bad sunburn. The physicians all seem very perplexed with this strange case. They have ordered genetic testing for the 23rd.

Please keep my son in your thoughts and prayers. His dream is to attend the United States Naval Academy and become a Navy Seal. 

At this point, we welcome encouragement and stories on "beating the beast". If anyone knows of other young melanoma fighters, we would love to be in touch with them.

Elizabeth

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2atlascedars's picture
Replies 5
Last reply 11/18/2010 - 8:46am

I am scheduled for a SNB and WLE (with skin graft) on my acral lentiginous melanoma on my heel this coming Friday (diagnosed 10/26), and I am finding it difficult to ensure that I will be covered by my insurance for my upcoming procedures.

Here are the details:
I was referred to a cancer center by my dermatologist (who is in my insurance network...Aetna), but only 1 of the three doctors caring for me at the cancer center is in my insurance network. I called the insurance company and they told me to have my dermatologist file a referral and pre-certification for the other two doctors. I did this, but the dermatologist's office staff told me that they should only have to provide the referral (which they have already done). They said that they are not prescribing the surgery, so they shouldn't be involved with the pre-cert. I also spoke with the Managed Care Representative at my cancer center and she said that if one doctor at the center is in my insurance network, then they all are because they use the same take tax code.

So...I have spoken with 3 different individuals involved in my care and they all said something different.  

Does anyone know the best way to handle this so I don't wind up with massive un-covered medical bills following my treatment and procedures?

Thanks,
Mark from California

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EricNJill's picture
Replies 3
Last reply 11/15/2010 - 10:58am
Replies by: KatyWI, King, washoegal

United Health Care only paid $8,000 of Eric's Medical Flight bill leaving us over $15,500 to pay ourselves.  The hospital used a company that was not in-network with our insurance.  I didn't know this could happen.  I thought if you were at an in-network hospital then all services used were in-network.  I even asked if the flight was a covered expense and they said yes because it was an emergency, I never imagined they would be out of network!

Does anyone have experience with this?  Thanks, JillNEric In OH

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