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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dawn dion's picture
Replies 21
Last reply 10/17/2011 - 12:40pm

I know lots of folks here take curcumin and I have been considering taking it myself.  Anyone know how much a person should be taking?    Thanks for the info.

Hugs and Smiles

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Lisa13's picture
Replies 6
Last reply 6/15/2011 - 3:35am

Even though none of my lung nodules have been biopsied to confirm melanoma, is the fact that some of them have grown since April make it pretty clear?  The largest is 11mm and the smallest is 3mm. The rest of them don't have measurements - just "tiny nodule" or "other nodules scattered within the right middle lobe do appear larger".  I guess what I"m getting at is even though I don't doubt this is melanoma, maybe not all 15 nodules are.  Once I get going on Decarbazine, I'll be scanned at 2 weeks and if not working, into IPI. 

Lisa

 

Many impossible things have been accomplished for those who refuse to quit

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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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Janis B.'s picture
Replies 4
Last reply 6/17/2011 - 8:32pm
Replies by: Janis B., nicoli, MichaelFL

I had my second Oncovex injection a week and a half ago.  Now experiencing hair loss.  Anyone know anything about this?  It's not listed as a side effect, but then, it's a trial drug, so who knows.  Thanks for any and all feedback (including sympathy - 2nd go-around for hair loss :-)

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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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Anonymous's picture
Anonymous
Replies 3
Last reply 6/17/2011 - 10:38pm
Replies by: Gene_S, TracyLee

Hi Gene,

 

I have been off the board traveling so I have lost track of many people's progress on MPIP.

If I recall you had surgery weeks ago, how are you doing & are you having any form of treatment? If so, where.

Looking forward to your update.

Best to you.

Douglas

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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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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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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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nickmac56's picture
Replies 5
Last reply 6/15/2011 - 4:20pm

My wife Meagan, who just had two deep skin tumors surgically removed on Monday, had a big set back. On Wednesday she had four seizures. Ended up in emergency room and ICU. She is still here, and we will be here through Monday. For those of you who have brain mets, or have been treated with brain radiation, or who think you might get brain mets, read on.

She had an initial CT scan which revealed no tumors large enough to identify at the CT resolution. She underwent continuous EEG monitoring and the neurologists discovered she had two things going on. Despite heavy doses of steroids and anti-seizure medication she is having continual sub-clinical seizures (no outward physical manifestation) which affect her mood and aren't good generally. So they are boosting the med cocktail to try to control this. Because we don't want to go the super aggressive route which is induced coma and different meds and intubation. The other thing they discovered through the EEG is the subclinical seizure activity is coming from the right side of her brain, which is not the site of her previous two tumors, brain surgery and Cyberknife treatment. So the suspicion is the brain irritation which triggered the seizures was not from the previous site but thus new zone. She had an MRI late last night and we expect results today. Probably another tumor or two which will need to be addressed.

While they can be Cyberknifed the issue is it sets us back again another 2-3 weeks before she can do IL-2. Once it gets to the brain it just is damn difficult even though you can zap those brain mets over and over, your body is left untreated. She doesn't even want a body CT scan at this point to know what else is happening beyond the known lung tumors.

The lesson I learned in all this is to call 911 if your melanoma person exhibits any strange behavior. In our case my wife was on the phone and suddenly lost the ability to talk or recognize her boys or me, who were both there. We called our Cyberknife radiation oncologist right away thinking it was some side effect from her recent treatment. They said no, get her to ER. We live pretty close to our oncologists hospital and ER so we put her in the car and I drive like a nay out of hell to get her there. But within two blocks of the ER she had a grand mal seizure. I had her there in another two minutes and the emergency team had her on the table to handle her next two grand mal seizures before all the medications kicked in and she was out. But apparently all our city 911 response vehicles have anti-seizure meds on board and could have administered it and she would have been strapped in to a gurney even though at the time we left home she was calm, quiet and seemed to understand what we wanted her to do. In our case I was just lucky. I was able to control her grand mal seizure in the car we were so close to the ER that she got medicated quickly. But I was admonished to next time call 911.

So we wait for results and spend another week in the ICU. I really hate these recliners they call beds for the overnight stays for the caregivers. Not much sleep.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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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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TracyLee's picture
Replies 2
Last reply 6/10/2011 - 9:33pm
Replies by: Vermont_Donna, nicoli

Hi y'all,

Second Ipi dose on Thursday.

Wondering from those who've already done the entire 4 doses of Ipi, IF you had side effects....when did they begin? I understand we are all individuals, may react differently, etc etc. I'm just trying to figure out if I should take off Friday, or was it a slow/gradual with symptoms, or did they begin very suddenly?

Time to posse up! :)

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Hi All

I have a question - something that Traci Lee posted about the other day and it has had me wondering ever since.

I posted a reply to MichealFL in her post but it probably got lost in all of threads.

Traci was talking about nodes getting worse on IPI and Micheal said something about them getting worse before they get better.   Next paragraph is the question I posted.:

Micheal you just said something that I have often wondered about.    I was on ipi and a month after I started had a new met. I was Stage 3 adjuvent care when I did the IPI.  My question has always been - How do they know the ip wasn't working?  I have never gotten a satisfactory answer to that, especially when they told me that the met was probabaly already there when I started IPI but to small to be seen on the CT scan.    The other thing you just said was "don't get the flu or a sinus infection" - I did get sick during that time frame - all of the glands in my neck where swollen, and I have never in my entire life, even when I was a kid, had swollen glands. I remember thinking while I was sick I hope this isn't a sign of something worse to come.  What if anything does that have to do with it? 

Anyway just something I have been thinking about - I am past IPI and on to BRAF/MEK now but it is always stuck in my head.    If anyone wants to chime in I'd appreciate it.

Hugs and Smiles

Dawn

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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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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