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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AZJulie85's picture
Replies 1
Last reply 5/11/2011 - 11:39pm
Replies by: lhaley

I am currently Stage 3b after having had two WLE and negative SNB's on the left leg and did one month of high dose interferon. Seems like every 5 years, melanoma reappears on my leg.  My derm just did a shave biopsy in the same area that came back as melanoma , but it is very thin (.2mm).  Will be seeing my oncologist and onc. surgeon next week, but am wondering if I should be expecting them to suggest a Wide Local Excision (WLE) and Sentinel Node Biopsy (SNB) again due to it being a recurrance, even though it is very thin?  The biopsy was a 5 x 4 x 1mm area, and the path report did say the melanoma extended to the edges of the specimen.   The derm scheduled an excision, but I thought I should probably get consult first from my previous surgeon - if he doesn't suggest a WLE should I insist on it?  Any thoughts on WLE and SNB would be appreciated. 

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boot2aboot's picture
Replies 8
Last reply 5/25/2011 - 4:17am
Replies by: Anonymous, ShariC, boot2aboot, RMcLegal, nicoli, FormerCaregiver

Anyone tried Bio-Chemo as adjuvent therapy and how did you do?

did you do radiation b4 or after this?

what were the pros and cons?

i am seriously thinking of going this route if my pet scan is clean...there are some questions concerning my spine and hip...

boots

don't back up, don't back down

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mommydog's picture
Replies 6
Last reply 5/21/2011 - 11:13am

We just returned from UCSF where my husband received the results from his first post treatment PET scan.  After 8 weeks of taking the trial drugs, my husband's tumors have shrunk 62%.  We were both stunned and thrilled, as was the doctor.  The tumor in his lung was gone completely.

For today, life is good.

 

Deborah

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sheri47's picture
Replies 1
Last reply 5/11/2011 - 9:45pm
Replies by: lhaley

little about my moms mm,  her first mm was in 1982 left heel they removed half her heel stage 1 level 5 no nodes,

then 2001 came back encased in a lymphnode in the belly was against the colon stage 4,

 2005 and 2009 back to the same foot , she always just did suregery to removed masses, no other treatment,

 ok now 2011 back to same foot , was wondering if radiation will kill the mass;s there are 3 now biggest 2 cm will kill them thank you sheri from ohio

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Vermont_Donna's picture
Replies 26
Last reply 5/15/2011 - 10:11am

Hi everyone,

I had my 12 week checkup including a PET/CT scan, labs and melanoma oncology checkup today. My PET/CT scan is completely clear of the hot spots from three months ago, except from where I have 11 month old poorly healing wider excision wounds on my lower calf. All other suspicious hot spots are now gone. My melanoma oncologist has declared me a complete responder to Ipi and I will NOT have further Ipi trreatments, unless I notice a re-occurence or it shows up on my next PET/CT scan, scheduled for 12 weeks from now. The clinical trial coordinator had thought a few weeks ago that I would receive another four infusions but now that Ipi is FDA approved the trial I was in is closed, so no more doses per the trial protocol. I am fine with this.

I am hoping that all others who are on Ipi have as complete as response as I have!

Vermont_Donna, stage 3a, NED x 3 months

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Terra's picture
Replies 6
Last reply 5/14/2011 - 4:59pm

Our onc is suggesting TIL or IPI.  I know about ipi but not TIL:

All I know is they take out a metasis and immune cells grow them and put them back in his body to fight - is this correct?  Also, do they provide chemo while taking out his immune system and how long will this take and how will he feel with  no immune system and chemo - we are trying to possibly get them to do the surgery - freeze and then have derek take ipi and if not work return for til treatment - onc thinks that this is promising - please explain about til trt - thank-you. 

 

Really need to make a decision b/c our third abbay is due in 3-4 weeks.  Thanks in advance for your help.\

terra

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lhaley's picture
Replies 16
Last reply 5/12/2011 - 9:58am

Yesterday I posted good scans. Well.......  it was the wet read and the report had not been dictated yet.

While in the office I complained about my surgery site from Oct. hurting.  The Dr. said that the radiologist hadn't commented but he saw that it had lit up and was surprised that nothing had been said to him on the phone. He felt and felt and could not feel anything. He called the radiologist and we thought he had gotten back with him because the Dr. was in and out of the room several times.  He even showed me the spot on the scan.

I was also seeing a surgeon about some stomach issues I've been having and when he left he said he was going to speak to my oncologist. 30 min. passed and we talked to the nurse and asked if she could call us today for the final decision if they were going to do additional tests on the gallbladder (not suspected to be mel). She said sure because my mel specialist was with another patient and she could not interrupt him.  I do love that I get to see more than one Doc often for the price of one, just always makes more waiting....  It was already 5pm at this point and we had left the house at 7am. with a 2 hour ride still to go.

Phone call just came. It seems that he was waiting for the final read on the scan. The arm is suspicious for recurrance. The tumor board is meeting on Monday to discuss. they always joke about how they just have to mention my name and they all know me.  He gave me some options that would be discussed if the final decision was recurrance.  At this point he is thinking surgery followed by radiation but he did give me other options including systemic. When they look at the scans again they might be thinking differently (my thoughts)

I went from high elevation to stomach rolling.  This would now be recurrance #6.  I've not lost my positive thinking but for the moment I'm down.  Have definitely decided that stomach issues are anxiety! Was feeling great before the Dr called, now I have that vice grip back.

Have 10 women coming tomorrow evening for an art quilt meeting and since I was in a good mood today I played instead of cleaned my house!  Sure hope they understand!!

Linda

Stage IV since July, 06  almost at that 5 year mark!

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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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