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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CLPrice31's picture
Replies 14
Last reply 5/16/2011 - 9:09pm

Hi all. I went for my latest CT/MRI scans...everything is clear except the new development of a thyroid nodule. My oncologist said he was concerned, that we need to do an ultrasound, but that most thyroid nodules are benign. Should I worry? (Of course I am going to regardless...but....) Has anyone else had an issue? I am still set to begin the ipi trial at Memorial Sloan Kettering on the 20th, so he must not be *that* concerned...right? frown

 

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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Tim--MRF's picture
Replies 3
Last reply 5/11/2011 - 12:02pm

A lot of folks on this board have explored or taken treatment with the Plexxikon BRAF inhibitor (also known as PLX4032).  The various companies involved in developing that drug announced early this morning that they have submitted the drug for approval by the FDA.  They are now calling it "vemurafenib."

If they submitted under acclerated approval (which I think they did) the FDA decision should come within the next six months, and possibly sooner. 

Yervoy was approved in March this year.  If vemurafenib is approved this year, that will mean two new drugs in one year--after 13 years of no new drugs being approved.

Neither of these drugs is what anyone would call a home run, but it is good to see some movement after many years of dissapointment.

 

Tim--MRF

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thebunches's picture
Replies 6
Last reply 5/11/2011 - 4:27pm

Of course, no results for 2 weeks, but today my husband had the WLE (holy crap that thing is HUGE) and the SNB. He had two lymph nodes removed during the surgery as well as the mel. I can't believe I forgot to ask how deep the thing was. (The inital dermatologist report said at least 1.0mm.) We go back to the oncologist on Thursday for a f/u visit and to get a look at the two incision sites.

He said one of the incisions was a "hernia incision", which was the type of incision. Anyone know what these things look like?

Also, I saw on a prelim report that my husband is a T2a, N0, M0. I assume that's good so far, but we won't know the results from the SNB for 2 weeks, so I guess that's not a permanent number, right?

What a day. Had our first-ever onco appt yesterday morning, and had surgery today. It's crazy how we entrust our lives and the lives of our loved ones to people we have only known for 24 hours.

Anyone have any tips for getting through the next two weeks? His site is his left abdomen and the nodes came from his left groin area. I want to help him so badly...I feel like such a failure because I have no idea of how to be the wife of a cancer patient. (Not that there's a class I can take or anything; I guess everyone just learns via trial and error...)

Prayers appreciated, and please know that you all are in mine as well.

--Shay

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lhaley's picture
Replies 13
Last reply 5/11/2011 - 4:33pm

I know that we have a lot of new posters lately and I just wanted to give you some hope. My mel arrived in 1979 and had multiple primaries. In 06 I had a deep recurrance under the original scar which took me to stage IV.  That was almost 5 years ago!! 

They've been watching 2 lung nodules and scans today showed they are still stable. Oncologist thinks they might even be a shade smaller. Too small to biopsy and they have been watched now for 5 months. In retrospect we can see that they were there for over a year.  

While I've had 5 recurrances, twice in the bladder, I'm still here and not planning on stopping!

Happy dance tonight!

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MMarieMetcalfe's picture
Replies 6
Last reply 5/13/2011 - 6:49pm

I just had surgery on 4/12/2011.  I had a tumor sized at 4.5mm, that was removed from the upper back/right shoulder.  My scar is pretty huge.  It is about 7 inches long.  I wasn't expecting that.  I just had the remainder of my stitches removed, but there is a lot of tension and sleeping is rough.  I want to know if there is an alternate than pain medication.  I start the Interferon on 5/23/2011, and I am still trying to wrap my head around that too.  I was also diagnosed in March with Fatty Liver Disease, and I know there are some health issues with the Interferon.  My doctor seems to think it is okay, but it still makes me nervous.  Any words of wisdom?  Thanks...

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dian in spokane's picture
Replies 1
Last reply 5/13/2011 - 7:47pm
Replies by: carol b

I've been out of town for a couple of weeks, but I am back!

I'll be hanging in the chat room tonight, at around 4 pm pacific, and again tomorrow at 8 am pacific time.

Please feel free to come on in if you are a new patient who has questions or would just like to talk to someone else who understands the whole melanoma experience.

You oldtimers drop in too!

 

dian in spokane

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kim2712's picture
Replies 3
Last reply 5/16/2011 - 4:48pm

My son is very, very ill as you know from my post titled "my son's journey thus far". He continues to decline. His lungs are full of fluid and tumors, as well as many other area's of his body. He also has horrible lymphatic swelling from the diaphragm down to his feet. The doctor will not give him anymore chemo as it did nothing for him. He did agree to give him a dose of ipi a week ago yesterday. He has gained over 60 pounds of fluid weight in the last few weeks. He and his wife want to try Gersen therapy but can't find anyone here to administer it. I don't know that he has enough time for that to work anyways. Is there anything else out there that may help him?

Thank you,

Kim

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Hello again, all.

Just looking for some support today, as I am feeling overwhelmed and scared. My husband Don is undergoing what we hope to be the last round of tests before a treatment plan is decided upon. He goes in to Dana Farber tomorrow for a fine needle biopsy of a suspected met in his liver needed to confirm the Stage IV diagnosis.

First, I am just find myself worrying about every last ache and pain he has now. The large difference in the progession of his disease between the April 6th and his April 29th PET scans really has me worried about how quickly the melanoma is spreading. (April 6th scan showed more lymph nodes near the incision site that still had cancer and an area of concern on the left side of his neck near the thyroid gland. April 29th scan showed increased growth of infected lymph nodes as well as 2 small nodules in right lung (too small to categorize as cancer at time of scan), scattered areas on both lobes of his liver, and bone lesions on the left humerus, left ilium, left femur, right and left posterior ischium, right acetabulum, sacrum, spinous process of L5, vertebral bodies L2, L3, L4, the left 7th rib, the manubrium and the body of the sternum. Taken from report.)

The doctors made it sound like none of these areas were very large in size, yet that seems to me like an awful lot of spread in 3 weeks. And here we are waiting *another* 3 weeks before we begin treatment. I don't know what to expect; I don't know how to tell when a cough is just a cough and when it's a symptom, when aching is just sleeping wrong and when it's a symptom. I'm just so scared that the necessary time these tests are taking are making Don so much worse that any treatment he gets won't work. Or perhaps I should say that if the 1st treatment he gets he is not a responder to, I don't know how much time he will have to successfully try another.

Perhaps I'm over-reacting (I know I probably am) but I am afraid of making wrong decisions that ultimately affect Don's prognosis.

 

Also, questions about the FNB he's supposed to be getting tomorrow... How does that work? What is the probability they will miss the tumor site and have to repeat the procedure? The very LAST thing we want is after waiting a week for the results is to have to repeat it and wait that much longer for treatment. What should we know/expect about the FNB?

Thanks for all your input and support!

Michelle

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Rocco's picture
Replies 3
Last reply 5/10/2011 - 3:23am

In March 2008 I participated in a pilot/Phase I trial at DFCI called, "Adoptive Cell Transfer of  Mart1/MelanA for Malignant Melanoma" during which I experienced a mixed result - significant shrinkage of a pulmonary tumor and a slight growth in another.  I am a firm believer that this trial aided my success with ipi in the  MDX-010 Compassionate Use trial that I entered into in August 2008.

Results of the 9 person Adoptive Cell trial were published on April 27th.  Here is a short overview of the trial from the DFCI website with an interview with Dr. Marc Butler. 

http://www.dana-farber.org/Newsroom/News-Releases/New-technique-extends-cancer-fighting-cells’-potency-in-melanoma-patients.aspx 

JimmyB if you're reading this, the full trial results may be of interest to you...

Luke 1:37

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Rendergirl's picture
Replies 28
Last reply 5/16/2011 - 2:26pm

Hi I'm Becca, stage III. I don't know if I'm 3a, b or c... can't seem to get an answer from my doc. Anyways, had Melanoma on my upper chest, had a wide excision done, Lymph node biopsy in right armpit was positive for cancer. Had all lymph nodes removed 1 1/2 weeks ago in that arm, they all came up negative, so only the initial node was cancerous.

My oncologist has been waiting for surgical to get done with their part before he suggested further treatment, and now they are done. I'm scheduled to see him the day after tomorrow and I'm wondering what he's going to suggest. I know he's not a big fan of Interferon. As he said, it makes you feel like you have a bad case of the flu for a whole year. That doesn't sound like fun. My mom says she's going to push for observation, but I want to be proactive and make sure it doesn't come back. I don't want to just "wait and see". So what do you think my oncologist will suggest? And if he does suggest only observation, what does that mean? What kind of scans and/or tests and how often?

Thanks for any feedback...

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Eugenia's picture
Replies 4
Last reply 5/13/2011 - 11:40pm

OK, from the beginning.  My SIL had a shave biopsy of a lesion on her lower left leg.  Lesion had been slowly growing and developed some tiny black spots, but had not bled or seeped anything except for once when she caught it with her razor.  The pathology came back as:

"Comment:  It is not known if this is a biopsy of a larger lesion or an excisional biopsy.  Due to small size, fragmentation and orientation, the margins cannot be adequately evaluated.

Skin, Left Leg Lesion:  Received and labeled “lesion L leg,” is a .2 cm portion of dark brown-gray tissue that is submitted as received along with a smaller minute fragment.

Clinical info or preop diag:  None given

Microscopic Description:  The sections consist of levels of two tiny fragments of skin with a melanocytic lesion.  There is a lentigenous melanocytic proliferation;  focally the melanocytic cells are seen in the superficial portions of the epidermis.  Cytologic atypia is mild to moderate.  No mitoses are seen.  A few lymphocytes are seen in the underlying dermis.  Fragmentation and orientation preclude evaluation of the margins."

This report came back roughly 8 days after the biopsy.  Two days later, my SIL went to GP to get copy of the path report and ask for a referral to an oncologist with experience with melanoma.  By this time, she had developed an infection in the wound left from the shave biopsy.

Two days later, she is in the oncologist's office and he tells her that because of the path results and her age (47ish), they will plan to do a WLE and SNL biopsy.  He sends her upstairs to a surgeon who performs a complete excision of the lesion with "good" margins--that is how the doctor described it at the time of the bx.

Today, five days after the complete excision, she received this pathology report:

"Pathologic Diagnosis:

Skin lesion, left posterior cuff, excision:

1.  No diagnostic features of malignancy is identified (please see microscopic description).

2.  Ulceration, granulation tissue formation, intense chronic, acute inflammation, focal giant cell foreign body reactions, and reactive/reparative epidermal tissue changes.

3.  Surgical resection margins are evaluated, showing benign tissues.  LL/mv

Tissues:

1. LEFT LEG - MELANOMA LEFT POSTERIOR CALF

Clinical History:

Melanoma L posterior calf S/P shave bx.

Gross Description:

Received in formalin, labeled with the patient's corresponding requisition number, with accompanying requisition labeled "melanoma L posterior calf", is a pale tan, hairbearing, rubbery, wrinkled skin ellipse with overall dimensions of 2.5 x .7 x .5 cm.  On the skin's surface is a tan-brown to dark grey irregular area with overall dimensions of 7 x 7 mm.  Black ink is applied to the margin and the specimen is multiply cross-sectioned.  (1A - C - toto on edge for LX2) KLL/rkm

Microscopic Description:

Microscopic examination performed.  Sections show no diagnostic features of malignancy.  No in situ or invasive melanoma is identified.  Focal deep ulceration, granulation tissue formation, intense chronic and acute dermal inflammation are noted, at the presumptive previous biopsy site.  Giant cell foreign body reactions are present. Subjacent tissue showed reactive/reparative squamous epithelial changes.  Surgical resection margins are evaluated, showing benign tissues.  Further well-controlled immunohistochemical stain (1C) showed that the reactive epidermal tissue and skin adnexal epithelial tissues are positive for pancytokeratin, with S-100 protein and MART-1 negative for in situ or invasive melanoma.

The immunoperoxides stain was developed and its performance characteristics determined by the Pathology Department at Wesley Medical Center, Wichita, Kansas.  It has not been cleared or approved by the U.S. Food and Drug Administration."

When the doc gave her these results today, he insisted that she still needs to do the WLE and SNL bx.  Am I missing something?  Do you suppose they are worried that the shave biopsy might have sent melanome cells into the lymphatic system?  It seems to me that the SNL bx is a very aggressive decision.  Any advice and help with deciphering the report are greatly appreciated!!

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Nan in Nebraska's picture
Replies 4
Last reply 10/10/2011 - 2:15am

Does anyone know if Medicare is approving and  paying for Yervoy? I'm anticipating re-induction. Have scans May 24th.

Thanks,

Nan

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Manubuzzi's picture
Replies 17
Last reply 6/7/2011 - 3:26pm

 

Greetings Everyone,
 
I hope that this message finds everyone well, or at least, on an upswing.  I am sincerely wishing you all well.  With respect to my mother, things haven't been going well.  Last week was great.  Before last week, we had had a difficult time, because she couldn't speak very well, she was confused, she couldn't remember much, and worst of all, she was aware of it.  Then, from one day to the next, she was great, and you could see it in her face that she felt so much better, and she just cried because it was a miracle.  
She remembered everything, she spoke perfectly, she had good mobility, etc.  Sadly, it didn't last long.  Saturday 4/30, we had to admit her into the hospital because she began seizing.  She was stabilized pretty quickly, but she regressed back to her "pre-miracle" state.  Due to the anti-convulsion medicine, she is extremely tired these days.  The doctors performed the necessary tests.  There was no bleeding detected in the Tomography,  and the 3 cerebral tumors are still active.  The blood test showed a low count of red and white blood cells and platelets.  She is really really weak.  Starting the day after the seizures, she was really tired and fatigued with trouble speaking and a bit confused.  We thought that it was all because of the new medication she was taking and that she would get better.  But today, it has been exactly a week that she has been taking the new meds, and each day she's more tired than the day before, she doesn't get out of bed, she sleeps practically all day.  We are completely at a loss.  We don't know if this new symptom is a consequence of the brain tumors advancing, the seizures she had, the anti-seizure medicine, or the other tumor in her liver.  Please, I'd like to know if one of you have had similar situations or if you have any help or advice about her new state.  We are so worried and desperate.
 
Thank you,
 
Manu
Son of patient

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/9/2011 - 9:55am

Hi Everyone,

 

Does anyone know if Stage 3c  Melanoma is eligible for California state disability. Please tell me what is needed to qualify? I am a newbie.

 

Thanks,

Kay

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mom3girlsFL's picture
Replies 1
Last reply 5/10/2011 - 5:32am
Replies by: Vermont_Donna

Hi Everyone,

Been lurking, not posting lately.  All is well!

Just wanted to shout out to all the moms a very Happy Blessed Mother's Day!  I know my 3 young, beautiful girls were the focus and the driving strength behind all the *!!#^!! of mel's adventure last year.  And, as I sit here 6mths NED with hand made cards proclaiming the "love you mommy" sentiment,  I feel so lucky and overwhelmed with joy! I am also reminded of my own mom, 70 years old, driving me back and forth to treatments, taking care of my girls so my husband would miss as little work as possible, so selfless...

Congrats all you moms who are here, whether struggling yourself or supporting your loved ones...YOU ROCK!!!  And thank you for being the best you can be!  Keep fighting the fight!

Love and Prayers Always,

Laurie 

Do not fear tomorrow, God is already there.

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