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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archer's picture
Replies 17
Last reply 4/11/2011 - 1:56pm

For those of you following our journey, this is the latest yesterday afternoon.You remember that on Tuesday we went to see our first onc.  You all let me know loud and clear that my wife and I should see a specialist.

We mentioned to the first onc and remember that was the first time ever being to an onc, for his opinion on a second opinion.  He said if he were in our shoes he would understand doing this.  He even said that there is only one in the whole midwest and he was located at Mayo Clinic.  He went on to say he wasn't sure how "hands on" this specialist was....  So, after he left they came in, took her blood and then on the way out talked to her about insurance and having to get two pre-approvals and that she thought the machine was booked all of next week.  Ok with that.. Remember, we do have an appt on Tuesday, at a Cancer Center and with a specialist.  Name and center taken from this website.  OK  U of Iowa is the center

Now, yesterday afternoon, the first onc's PA calls my wife at her work and asks her if they were still to proceed on her case because the specialist we are going to requested her records.  She reminded her of the conversation with the onc where he stated no problem with him and a second opinion.  The PA then went on to ask my wife, "should we still proceed to schedule the PET"  My wife, confused by this call, having to take this call at work said, "yes" with the understanding that we will cancel if we are happy with the specialist.  Here is the kicker and the main question.  A small history.  They are trying to find the main melanoma and 18 months ago she had "basil cell" removed about 2 - 3 inches away from the underarm where she found the lump (spindle cell).  There seems to be a strong suspicion that the basil cell might  have been misdiagnosed and that would then be the primary.

 So, the last statement from the PA was, what is the other onc name:  my wife wasn't sure and she told the PA that.  Then the PA said, well the other doctor has also requested the stain from the dermatologist that removed the basil cell and we are NOT sure we are going to send this to them. We feel that our local pathologist should review that stain since the lump was first sent to her.  (this is the same lab that called when they first got the biopsy and told us that they were going to sen it to Mayo or the place we are going Tuesday)

Does this seem like normal treatment for my wife to grill her with this and then to mention they are NOT going to send her stain to the specialist we are see Tuesday?  I thought this belonged to my wife and she could have it sent anywhere she chooses. So many questions, so many thoughts.  Thank you.

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I had my melanoma removed and a sentinel node biopsy done in December of 2010.  One of three of the sentinel nodes was positive for cancer. This led to a superficial groin dissection , where all of the Lymph nodes were clear of cancer. 

I saw my Oncologist today and was offered three possible therapies for my Melanoma;

1. Standard INF - 4 weeks of IV therapy by 48 weeks of 3 shots per week.  Therapy is FDA approved.

2. Pegylated INF - One shot per week for 2 years.  This treatment was recently approved by the FDA.

3. Leukine(GM-CSF), not to be confused with IL2, 14 daily shots followed by 14 days without.  This schedule to be repeated for one year.  Long term study data for this therapy is not yet available.  However, Leukine has been shown to be helpful in cases where there has been a cancer recurrence in the patient.

I have a couple weeks to make up my mind and set things in action and would appreciate any input anyone has for the PEG-INF and the Leukine(GM-CSF) therapy versus the standard INF.

"Hope is the only antidote for fear" Lance Armstrong

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dianneCT's picture
Replies 1
Last reply 4/8/2011 - 12:09pm
Replies by: Vermont_Donna

Have been Ned since January 30, 2006 due to isolated limb perfusion and Temodar.  (lymph node dissection and  50 weeks of interferon)

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Have been Ned since January 30, 2006 due to isolated limb perfusion and Temodar.  (lymph node dissection and  50 weeks of interferon)

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Peter L's picture
Replies 1
Last reply 4/6/2011 - 5:45pm
Replies by: MichaelFL

Howdy Everyone...

If one knew from pathology report that their mitotic rate was 2, would there be any way to then use that number to calculate their own tumor doubling time ?  Maybe it's way way more complicated than this but I thought I'd just ask anyway.

 

Regards, Peter

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Lavge's picture
Replies 15
Last reply 5/3/2011 - 7:10pm

Does anyone know how quickly a melanoma can evolve after a mole has become itchy and sore?

The reason I'm asking is that about 2 months ago a mole on my back started itching. I saw my doctor about a month ago but still has to wait 3 more weeks before I can see the dermatologist. I've now noticed that it's changing rather quickly. I don't know how long it has been changing for as being on my back I haven't wantched it much before it started itching.

I'm now really worried. I have loads of moles and some clearly growing. i have no family history, but is fair skinned, burns rather than tans and was repeatedly burned as a kid.

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Lavge's picture
Replies 0

Does anyone know how quickly a melanoma can evolve after a mole has become itchy and sore?

The reason I'm asking is that about 2 months ago a mole on my back started itching. I saw my doctor about a month ago but still has to wait 3 more weeks before I can see the dermatologist. I've now noticed that it's changing rather quickly. I don't know how long it has been changing for as being on my back I haven't wantched it much before it started itching.

I'm now really worried. I have loads of moles and some clearly growing. i have no family history, but is fair skinned, burns rather than tans and was repeatedly burned as a kid.

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mkp050680's picture
Replies 14
Last reply 4/7/2011 - 11:34pm

a very close family friend died from melanoma 2 years ago at the young age of 23. this disease scares life out of me - and now my husband has had 2 atypical moles removed - they were both mild, but i am now so nervous that he is going to get melanoma as his risk is increased. did any of you have atypical moles before melanoma?

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CKasper's picture
Replies 2
Last reply 4/8/2011 - 9:18am
Replies by: nickmac56

I was watching the news yesterday evening and was shocked to hear that part of this budget hold up is due to certain riders the House of Representatives is attaching to the budget.  One of the riders is to abolish Medicare.  The House is also asking for trillon dollar cuts to medicaid.

Medicare is paid by everyone through a separate tax, its our Social Security /Medicare tax.  So each one of us pays into this system which is suppose to be a very well run system.  However there is a movement to privatize Social Security or to get rid of it.  Its our money and our entitlement and the House or Representatives shouldn't be messing around with it.  I don't know how many of you are receiving treatment through medicare or medicaid, but these two sources of health care for folks who do not have regular insurance is in jeopardy. 

If you are a person receiving health care through one of these programs, please email your congressman and senator urging them to stop the gutting of these programs.

We have two wars, and another possible one in Libya where we are spending billions monthly and they want to gut medicare and medicaid.  I know many people who are on Medicare and I don't think its right.  Its our money and its our entitlement.  Let them find another area in which to cut. 

C

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I was watching the news yesterday evening and was shocked to hear that part of this budget hold up is due to certain riders the House of Representatives is attaching to the budget.  One of the riders is to abolish Medicare.  The House is also asking for trillon dollar cuts to medicaid.

Medicare is paid by everyone through a separate tax, its our Social Security /Medicare tax.  So each one of us pays into this system which is suppose to be a very well run system.  However there is a movement to privatize Social Security or to get rid of it.  Its our money and our entitlement and the House or Representatives shouldn't be messing around with it.  I don't know how many of you are receiving treatment through medicare or medicaid, but these two sources of health care for folks who do not have regular insurance is in jeopardy. 

If you are a person receiving health care through one of these programs, please email your congressman and senator urging them to stop the gutting of these programs.

We have two wars, and another possible one in Libya where we are spending billions monthly and they want to gut medicare and medicaid.  I know many people who are on Medicare and I don't think its right.  Its our money and its our entitlement.  Let them find another area in which to cut. 

C

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/6/2011 - 4:07pm
Replies by: premedy, MichaelFL

Questions....How hard is it to get into MD Anderson? Any doctor recommendations?  We are being told that we are out of options where we are and want to get the best chance of survival, so are seriously considering a move to a great melanoma center (according to a lot of you, MD is one of the best).  Any advice, comments would be appreciated.  My husband is stage 4 with mets throughout his body and brain, and has not responded to interferon, braf,  ipi, etc.  We need to make a decision asap.  As a lot of you know, waiting is killer!!!

Thanks

laughter is the best medicine

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heg50heg's picture
Replies 7
Last reply 4/30/2011 - 10:31am
Replies by: Lauri England, Vermont_Donna, MichaelFL, ockelly, King, Anonymous

Hello , I have just finished my 1st month of high dose interferon treatments. I will see my Dr.on Monday of next week and start the shots foe 11 months. It went well except for the 3rd week when I got really dehydrated and had to spend 3 days at the hospital getting fluids. The Dr. tells me the shots will be easier as there only half as strong but I am skeptical on that as the side effects from the treatments were about all I could handle. The headaches were just about unbearable and I was sent for 2 more brain skans during the last month, and they were both negative. I just feel like one of these times I wont get so lucky. Has anyone had their cancer spread while on Interferon.

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archer's picture
Replies 21
Last reply 4/7/2011 - 10:39am

Ok, I was asked to report back on my wife's first visit with an oncologist.  It was full of downs and one up.

First she was seen by his PA.  Nice female, caring, asking a lot of questions and full body exam of her.  Found nothing.  Yeah!

Then the oncologist comes in and does basically the same thing.  Asked her to dress and both came back in.  Here is what he said.

Please keep in mind this was a first time for both of us... we went in scared, confused and sick (I had these symptoms not my wife)

He said that it could be a stage 3 or possibly a stage 4.  He said if it was a stage 3, it was curable and would be treated with  that in mind. (wow, I never

expected to hear that) but if it was a stage 4 it was not curable and she would have to make some decisions if treatment was worth the side effects or

would it be better to do nothing.  After that conversation, my bubbly, smiling, always positive wife was floored.  No smile, the life went out of her 

immediately, zest was gone etc.  I could immediately tell and I told her to ask him and tell him what she was thinking.  I asked her if he had scared the hell

out of her and she told him "yes".  He apologized and told her that wasn't her intention.

After they left, a nurse came in to draw blood and for whatever reason, he started talking about her father, 65 yo who had a lump in his neck.  Not really 

big she said but he came into this same oncologist and had it biopsied and the results were melanoma.  Well, after a PET scan, it has metastasized to his 

lung.  Small tumors she said.  The doc along with the father and family decided to wait since he had a strong immune system etc etc.  It has been 7 

and the last scan or xray showed the lung tumors grew but barely.  They are going to keep with the watching.  So, as she was sharing that story, I thought

to myself that if the doc knew she was telling that, maybe she'd be in trouble but we were glad she shared that because it became the positive point of

out time at this place.  So, we don't know what to think of this oncologist.  We are going to see another one Tuesday that says he specializes in 

melanoma.  At least it will give us something to compare to.

My thoughts...

1. Please share your thoughts with us on how this first encounter strikes you

2. How do I get this sick feeling in my stomach to go away.

3. How do I get my mind to quit racing and always imagining the worst

Thank you all for your replies.  I look forward to reading them.

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cheryl brodersen's picture
Replies 9
Last reply 4/7/2011 - 1:31am

How do you know when to stop chemo? My husband is Stage IV, has been for 2.5 years and last year underwent 19 treatments of DTIC. Now has just wrapped up 6 treatments (2 rounds) of abraxane/avastin (the breast cancer drug) and gets scanned tomorrow to see what effect if any the A/A chemo has had. This is 25 rounds of chemo. He is pretty sick most of the time. Quality of life sucks.

So tomorrow, if the tumors are 'stable' or shrinking just a little, they are going to want to keep going with the chemo. When do you call it off and switch to another drug? He is BRAF positive and has never tried ipi or any of the MEK or GSK or that other new one...Evesia? Whatever, I just read about it on here! When do you make that call? What is the criteria that you use? It's so scary to take matters into your own hands. We love our oncologist--his oncologist, I should say--but I know he is going to want to keep going with the chemo. I'm afraid that it's going to make him too sick to ever bounce back. Does that make any sense?

Also, where do I find the BRAF drug trial info? Sorry, I tried to google it, but didn't have much luck. I appreciate any help anyone can give me. I want us to make the right decision, to be proactive, but I would love to hear some other people's thoughts on this.

Thanks to all of you!

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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Replies by: premedy

Help to prevent the risk of melanoma. Please sign my petition to the RI Legislature to support House Bill 5627 to prohibit minors under the age of eighteen from going to an indoor tanning facility without a Doctor's prescription. This bill failed last year due to lobbying from suntan parlor owners and the Indoor Tanning Association. Research shows that there is a 75% increase in the risk of melanoma from exposure to UV radiation from indoor tanning. In 2010, it was estimated that the indoor tanning industry generated 2.6 billion dollars.
My petition to stop skin cancer in ri is on the change.org website. You can access the link with http://www.change.org/petitions/stop-skin-cancer-in-ri. My husband was diagnosed with Stage III melanoma in 2006 and lost his courageous battle twenty months later. My thoughts and prayers reach out to each one of you touched by melanoma. Never give up and never give in.

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