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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jimjoeb's picture
Replies 3
Last reply 6/13/2011 - 11:56am
Replies by: jimjoeb, Lisa13, ValinMtl

Hi everyone!

Well I'm home from the hospital and have had my first homecare visit. The surgery (left inguinal dissection) went well. My surgeon only took the superficial nodes because there was no macro evidence of cancer. She was also able to save the vein. Thank you, God, for a skilled surgeon!

I feel well but need to remember my energy will have its limitations for a while. I have one drain that I am able to look after myself. The goal is 20 cc per day for two days in a row.

From a pathology point of view, I expect the results by June 17 from two new biopsies by my dermatologist took on June 8. There may be a provisional pathology report around the same time from the surgery and another biopsy taken by the surgeon in a different spot while I was under general anesthetic. I expect the final pathology report from the surgery the week of June 27th.

In the meantime, I'm focusing, or trying to, on recovery from the surgery and in doing all of the right things for lymphedema risk management. My surgeon has referred me to a physiotherapist who specializes in CDT. I hope to meet with that team this week. In the interim, I'm wearing a compression stocking on both legs and keeping the left leg elevated as instructed by the hospital medical team.

So far so good and I am determined to maintain my optimism.

Be Not Afraid-God is with you always Stage IIIa

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Erinmay22's picture
Replies 17
Last reply 6/13/2011 - 6:46am

Just thought I'd give folks an update.  Had CT scan done on Wednesday - came back as no evidence of  disease!  I am excited but still can't believe it.

Quick recap on history - Jan scan showed 12+ nodules ( between both lungs), March 1st VAT's biopsy confirmed melanoma in the lungs.  After a long wait for a trial to open up, April 19th scan showed no evidence of growth (all but 1 spot in my lungs were gone!).  So while I am BRAF +, I couldn't get in the trial.  June 8th scan shows no evidence of disease!  

I should also note that I have not had ANY drug treatments yet.  If we hadn't done a biopsy on the spots in March we'd probably just think I had an infection.  Has anyone had this happen?  Going to continue a watch and wait.  Will scan again August 5th.  

Thoughts and prayers out there for everyone!  

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Carol Taylor's picture
Replies 11
Last reply 6/12/2011 - 7:42pm

Treatment Diaries posted this on facebook, and this is a link to their website. Unbelievable service, I checked them out as I' sure Treatment Diaries did.

http://cleaningforareason.org/index.html

This is what they say,

"Fighting cancer is difficult enough, but living with it is even tougher - and that's where the Cleaning for A Reason Foundation steps in.  This  nonprofit offers free professional housecleaning, and maid services to improve the lives of women undergoing treatment for cancer - any type of cancer."

They have a link to find the service closest to you.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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First, Darcy is doing fine.  Hopefully she won't mind be posting a status update.  She speaks often to school children on Sun Safety.  She's actually speaking today - hence me thinking about MPIP.

She was originally dx with stage IIIc in 2004, did a year of INF, and 7 years later - is happily NED.

My thoughts and prayers never are far from those struggling and those who got their wings. 

 

All my best,

Duke (West Hartford CT)

Duke

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Replies by: DukefromMA, jag, Charlie S

First, Darcy is doing fine.  Hopefully she won't mind be posting a status update.  She speaks often to school children on Sun Safety.  She's actually speaking today - hence me thinking about MPIP.

She was originally dx with stage IIIc in 2004, did a year of INF, and 7 years later - is happily NED.

My thoughts and prayers never are far from those struggling and those who got their wings. 

 

All my best,

Duke (West Hartford CT)

Duke

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LynnLuc's picture
Replies 5
Last reply 6/12/2011 - 1:10pm
Replies by: MichaelFL, Anonymous, LynnLuc

http://www.biooncology.com/research-education/braf/metastatic-melanoma/solid-tumors/index.htmlOncogenic BRAF expression is associated with poor prognosis in metastatic melanoma and other solid tumors

The molecular signature of a tumor is likely to influence patient prognosis. While the mutations that result in metastatic melanoma are heterogeneous and can involve other proteins, overactive RAS-RAF signaling is significantly associated with a poorer prognosis (Figure 3). Specifically, the presence of a BRAF mutation in metastatic melanoma is associated with poorer prognosis from time of first metastasis or time from first resected metastasis. Other mutations, such as NRAS, are also more common in this disease state.28-30

In addition to melanoma, BRAF mutational status is associated with a poor prognosis in other cancers. The presence of mutated BRAF is a powerful prognostic factor for advanced and recurrent colorectal cancer. BRAFV600E is associated with a worse prognosis in stage II and stage III colon cancer independently of disease stage and therapy. In papillary thyroid cancer, the BRAFV600E mutation is associated with an increased risk of nodal recurrence requiring re-operative surgery.28,31,32

 

Influence of BRAF or NRAS mutation on overall survival (OS). OS was measured from removal of primary tumor or the respective metastasis to time of death. Kaplan-Meier (KM) curves for OS of metastases stratified for absence (purple line) or presence (blue line) of either a BRAF or an NRAS mutation .29

Adapted with permission of Medknow Publications and Media PVT Ltd., Houben et al. J Carcinog. 2004;3:6; permission conveyed through Copyright Clearance Center, Inc.

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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Anonymous's picture
Anonymous
Replies 19
Last reply 6/12/2011 - 12:25pm

i was recently diagnosed w melanoma.  there were 2 biopsies.  one came back "malignant melanoma in situ," and the other came back "malignant melanoma of superficial spreading type, invasive to a breslows depth of 0.72mm, clarks level 3."  but the biopsies were from the same lesion, just different portions of it.  and i cant get anyone to answer if its possible the depth could be increased in the location mole originated.  im just trying to understand how this disease acts. so far ive been told the same lesion shouldnt have come back w different pathologies, but it did. any help is appreciated...

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Rendergirl's picture
Replies 17
Last reply 6/12/2011 - 9:31am

When I was first diagnosed a few months ago, my mom and sister didn't want me coming onto this site because they thought I was just scaring myself with other people's horror stories. I fought them on it and continued coming because I can't fight unless I have info, and I got info and more from all of you. I wouldn't have gotten through my past three surgeries withoutt the people here. BUT.... a little part of what they were afraid of was true. Most days are good since I am NED now after my 3rd surgery, but I do have a tumor behind my knee and I have my 4th surgery on that in a few weeks and the chance it might be cancer is scaring me. But like I said, most days are fine. Then there are those days that I read about person after person who's journals I follow are in ICU or in the hospital and not doing good. And someone else posts a tribute video on YouTube... it just hits me like a hammber blow.

How do you keep from freaking out when it seems all the fighting and the tears and the pain is for nothing? When you feel like no matter what happens, this might really kill you? How do you stop from scaring yourself? How do you stop your heart from breaking over everyone else's battles?

Just having a bad day I guess. Honestly, I know I should be so happy, I'm NED. There are so many that are SO worse off. Maybe I'm just too empathic... It just doesn't seem fair. I hate melanoma. No one deserves this.

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Gene_S's picture
Replies 4
Last reply 6/12/2011 - 2:02am
Replies by: bcl, Gene_S, LynnLuc, Anonymous

Here is a good site for anyone interested in getting their blood tested,see

http://www.lef.org/Vitamins-Supplements/Blood-Tests/Blood-Tests.htm

You can get a "free" trial membership here, see

 
Here is one test that I suggest every cancer patient should be tested for , see
 
 
For more info on Vitamin D, see
 
 
Their tests are usually done at a local Lab Corps testing center. I have personally used them and I am very happy with their services.
 
Best Wishes,
Gene
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Replies by: King, LynnLuc, lhaley, Teodora

Just had a clear PET/CT scan.  That puts me a 2.5 years since last surgery.

 

Chris Parsons

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Nicky's picture
Replies 3
Last reply 6/11/2011 - 7:36pm
Replies by: Nicky, MichaelFL

Hi everyone.  I've got my test results back which are below and I need your input as far as the regression aspect is concerned.  This is my third primary melanoma, the 1st one was a in situ melanoma (not 100% sure if there was regression with this one or not) 11 years ago, and this mole or an unknown primary nine months later metastised to my groin lymph node, (Stage III).  6 years ago I also had a 3.55 millimetre desmoplastic melanoma - no regression

The latest one is as detailed below

Clinical Details

Dysplastic Naevus

Macroscopic

The specimen is an elliptical excision of skin measuring 15 x 8 x 5 mm.  On the surface, there is a pigmented lesion measuring 9 x6 mm. 3 transverse sections .(pa)

Microscopic

This lesion is a Level 1 (in situ) superficial spreading malignant melanoma.  This has arisen within a dysplastic naevus. There is no evidence of ulceration or dermal invasion.  Mild changes of regression are present.  The mitotic rate is low (<1/mm square).  No satellite lesions are present.  The close peripheral margin is 1.3 mmm

summary

Left upper back:  Levl 1 (in situ) superficial spreading malignant Melanoma.

My question is the regression aspect.  i don't understand if this is a good sign or not.  Does it mean that it may have been deeper and my immune system is finally recognising it, or does it mean something else?

 

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Gene_S's picture
Replies 3
Last reply 6/11/2011 - 6:23pm
Replies by: LynnLuc, Carol Taylor

Hi, I am taking the liberty of reposting this question under a new topic as I feel that it would not get the proper views under the topic "Mexican Melanoma Treatment". Best Wishes, Gene

--------------------------------------------

Nebr78 has posted a reply to Mexican Melonoma Treatment:

Hope someone sees this.   I am on radiation for a mass in the spine and next to aorta.  I have 3 treatments left.  One day I have no pain in back at all then next day I am eating pain pills.  And  the pills are not doing it today.  June 11.  Also on light doses of  chemo.  Will get stronger after radiation is over.    Of couse my heart disease is the handicap.  Heart will not take strong stuff.  And it is strange.  Right now the pain is kind of on the left side toward the hip.   Tomorrow it may be towards the right side.

I am  beginning to wonder if the Melanoma is the  cause of pain.  Could be buldging disc or something like that.    At age 79 it might be anything.

Anyone with similiar effects???

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

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Sherron's picture
Replies 3
Last reply 6/11/2011 - 11:34am
Replies by: Carol Taylor, Sherron

My computer at home is still not working....Sending Hugs, Love, and Prayers to Eric & Jill.

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dewdads's picture
Replies 8
Last reply 6/11/2011 - 11:16am

I am trying to use this format to get and give information regarding the test drug Eisal E7080.  I took my first dose on 1/3/11. I also took an baseline PET/CAT and MRI on that day. At 28 days another CAT Scan showed the lesions had lost 1/2 of their volume.  Day before yesterday I took my second CAT under the E7080 protocal.  I think I am one of the first people to get this second scan.  I am very pleased to say that the SCAN showed that the size of the metstisis in my lungs have not increased since the second scan and there appear to be several fewer lesions, even though I had missed 4 weeks of the treatment.

I started with 24 meg  for 28 days and had my first CAT Scan  It showed the lesions had decreased but I  had to quit because the side effects I was experiencing were so bad that I could not endure them.   At that time I took my second CAT scan I went off the drug for 14 days and within 3 days I was starting to clear up some serious symptoms.  Wen I  resumed the medication at 20 meg  I was begining to repeat the symptoms within 3 days.  I was taken off for 10 days and at a third 4 week period went back on at a dosage of 14 meg.  While it has not been pleasant I can live with this dosage and the side effects I am experiencing.  These are mostly fatigue and unsteadiness.  I an experiencing muscIe and joint pain in my extremities.  My appetite remains this time.

I know that University of Colorado at Aurora is sponsoring E7080 trials.  I would like to make contact with people from this site and the other brave souls around the US who are involved with these tests.  I hope you all are experience the positive results I have had.

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Nebr78's picture
Replies 9
Last reply 6/11/2011 - 10:29am

Well, I opened my big fat mouth when it would have better to keep it shut.  I am the guy that has a friend that knew 2-3 persons that went to Mexico and came back supposedly cured.  (I got some emails that were quite disagreeable with my statement, quite disagreeable.  Thats ok.

My friend has reported to me they found a tumor on the neck of one of them.   They biospied it and he has  Mr. M. on his thyroid.   Friend said the guy spent $30,000 for what.

I apologize for maybe upsetting some people.  Of course it don't hurt to stir the pot once in a while.

The United States is not curing many people either.  I have 8 more radiation shots on the melanoma that has entered my spine.  Don't know how much chemo I have left.  I still can't help think there should have been a cure found by now, or at least  a treatment that will slow any and all Melanoma down promptly.  I  am having a bit of trouble getting a copy of my previous 2 ct-scans, one 6 wks. ago and the other maybe 9 months ago.  I want pictures of them.

I wish I could post the image that was made for me of the last scan.  And the  answer as to why in the h__they didn't start this radiation sooner. (Maybe someone sent them to Mexico????????) It is a darn good picture of the mass, spine, and aorta.    Thankyou

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