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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Steve2142's picture
Replies 4
Last reply 10/20/2014 - 6:04pm
Replies by: Ed Williams, Anonymous, Steve2142

I had metastatic melanoma in one lymph node in 2012 and had a complete lymph node dissection. I did not opt for interferon.  Have watched it closely and had annual pet scans and all has been good.  I just found two suspicious spots and had them biopsied and they are both new melanoma lesions that the Dr. believes are tied to the original melanoma from 2012.  One on my back was a 6.5mm non-ulcerated lesion and the other was a 4.9mm ulcerated lesion in my scalp above the ear. Going back for a pet scan and will probably need to discuss immunotherapy again.  My question is would this be considered "distant metastases" of the skin and therefore puts me at Stage IV?  Thank you.

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Ashley's picture
Replies 8
Last reply 10/20/2014 - 3:03pm

Hi,

My dad has stage 4, and just started on a combo trial of nivolumab and lirilumab.  Since starting his LDH has been dropping... I don't want to get my hopes up, but at the start it was 400, after the 1st dose it went to 397, then 348, and today 260 (normal range 110-210).  I'm hoping this is a good thing, but just looking for some feedback :-)

 

Thanks,

Ashley

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BrianP's picture
Replies 7
Last reply 10/20/2014 - 3:01pm

I wanted to share this in the event someone else on here finds themselves in a similar situation as a friend of mine recently.  My friend is about 16 months into a 2 year clinical trial for nivolumab.  He achieved a NED status about 4 to 6 months ago.  About a week ago he went in for a regular infusion and got a big surprise. Right before he was heading to the infusion center the clinical trial coordinator came in and told him he was being taken off Nivolumab effective immediately.  Apparently in the protocol there is the following statement, "Discontinuation Due to Confirmed Complete Response:  Subjects with a CR continue to receive study therapy until response confirmation or for an additional 2 cycles (whichever is longer) and then enter the follow-up period."  Being none to pleased with this "surprise" my friend, along with the staff at UVA, appealed to BMS and got them to reverse their decision primarily on the argument that the quote above did not match the paperwork my friend had signed.

I'm curious if this foreshadows what BMS's actions will be at the end of the 2 years for most participants.  From Laurie's post about her trial it seems like Merck may have a different view than BMS.  Time will tell. 

Brian

 

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Hi :)

I have had a mole removed from the sole of my foot today. It was 4mm by 4mm in 2013, after a visit to my GP as it had ulcered & was weeping a clear fluid.

it grew from that to 7mm wide & 6mm high in 13mths.

My question is whether anyone has had a mole this size or bigger? That has evolved & grown so quickly (if that is quick?) & it ticks all the ABCDE criteria, but has come back benign? Or Dysplastic?...

Any advice greatfully recieved thank you! :)

Tori x

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katieherwig's picture
Replies 5
Last reply 10/20/2014 - 11:41am

I was diagnosed with Stage 4 on July 28, 2014. I had anywhere from 10-18 tumors. Mostly in my lungs, liver, and ovaries, it was "widespread melanoma". I also had some in my abdomen, bones, and subcutanous. I had exploratory surger removing my ovareis and some of my small intestine. I started Tafinlar on 08/20/2014 at MD Anderson and had my first round of zometa that day. I went back to MD Anderson on 10/14/14 to get my CT, PET, and MRI scans completed. I got my results on 10/15/14. My doctor was very pleased with the results. Only 2 tumors were shown active in my liver and my left thigh and one dead tumor in my lungs. We are so pleased and happy with the scans. That night I did my first round of Yervoy and my second round of Zometa. I will be continuing the Tafinlar and going every 3 weeks for my Yervoy for a total of 4 rounds. I hope this is just the begining of good news to come! It's hard but I can do it!

I also asked my doctor about diet do's and don'ts. He told me to follow the LCHF diet and also get some information at www.dietdoctor.com.

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SarahW's picture
Replies 15
Last reply 10/20/2014 - 5:17am

I saw a post earlier this week polling people with NED after treatment of stage IV melanoma. So I thought to ask how many of you out there have stable non-progression of Stage IV  on this drug combo. My husband has been on it since February with stable disease as of July's scans.

Prior to that he was treated with stereotactic brain radiation surgery x 8 brain tumors on two occasions, Vemurafenib alone, and Vemurafenib + XL888(pre-clinical trial drug) and dabrafenib alone.

His energy level and skin color have returned to his pre stage 4 level on the dabrafenib and Mekinist combo

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/20/2014 - 5:11am
Replies by: rick1981, Anonymous

Is there anything to look forward to with regard to melanoma being presented at the 2014 European Society of Medical Oncology (ESMO) Annual Congress held September 26-30 in Madrid, Spain?

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Wilbur's_Mom's picture
Replies 6
Last reply 10/19/2014 - 12:37pm

My father had a melanoma on his leg that was removed by wide excision in October 2013.  He was staged at IIa and was told he needed no further treatment because his sentinel nodes were clear.  In late April he noticed three new lesions near the surgical site.  They were all three melanoma and he was referred to a melanoma group in SF.  In June he had another wide excision around the three lesions and three MORE brand new lesions.  He had sentinel node mapping again and three nodes were identified - two superficial and one deep.  His melanoma surgeon chose to only remove the two superficial nodes.  One of the two came back positive with melanoma and he was re-staged to IIIc.

His oncologist told him the group was recommending radical lymph node dissection of the groin - taking all nodes superficial and deep.  When he consulted with the surgeon, the surgeon wanted only to remove the superficial nodes.  He now has to decide whether to to the radical or superficial with not much information.

One concern I have are that there's still a deep node that hasn't been examined with potential for cells.  The second concern is that the surgeon wants to rely on PET scans for evidence of metastasis.  My father has had several clear PET scans but has active disease in his leg and inguinal nodes so I'm not sure how reliable they are for catching movement early.

Following the surgery (either surgery) he will join the clinical trial for Yervoy vs. Interferon.  If anyone has advice or experience about opting for radical or partial lymph node dissection we welcome input.

Thanks,

Stephanie

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kalisama's picture
Replies 9
Last reply 10/19/2014 - 12:29pm

I;ve been going through so much lately that i haven't had time to check in to the forums, but hope to be back around more as i contiue this journey with y'all.

I'm wondering if others with aggressive brain mets have also been diagnosed with Leptomentingeal disease? While I understand it to be somewhat rare, it now has me more concerned than the melanoma itself. I have been having increased CNS symptoms from numbness to urinary incontenance, as well as some cognitive breakdown. I'm not even sure what to ask my oncs about this new progression which is evidently very full on for me.

Last brain radiation failed, and the 2 largest tumors we are after have tripled in size in 3 weeks after cyberknife. we're going to try to go after them again this week. with the hope that the first Yurvoy infusion of 2 weeks ago may help the radiation work better this time. Starting to run out of options short of WBR, a whole other thread that I'm hoping to not have to go down here or in life.

Anyway, as always, I'm interested in your experiences and wishing you the best of health always.

Blessings and gratitude to all,
kali

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robbier's picture
Replies 5
Last reply 10/18/2014 - 7:42pm

Back in March of this year, I had a PET/CT which showed hree hot spots.  Three surgery later, a trip to MD. Anderson.  Had a Pet/ct scan in July that showed two area of concern.  On in the abdomen and one in the mid right shaft of the femur.  Had a bone scan August 10.  Which showed no evidence of disease at that time.  Cancer Doctor thought I was in remission and didn't need treatment.  Around the last week of August I went to see my General Health Care Doctor.  I felt like I had a pulled groin muscle.  He gave me muscle relaxer, two weeks went by and still in pain.  By his time I was running a low grade fever.  Went back to Dr. He found blood in my urine, and a appointment for a Urologist for Oct 13.  Was sent back to Cancer doctor He sentme to see a Bone doctor.  Saw Dr. Harcout around Sept 16th.  He thought at this time, I had pulled muscles 7,8 in the left left and needed physical therpy.  The pain so severe I couldn't drive, and couldn't walk.  Got a friend of mine to take me to Hospital.  I finally got admited and they did a CT can with and without contrast, and MRI.  Monday ( Oct 6, 2014) the Cancer doctor said there was lesions seen in the abdomen towards he pelvic area, and they found a L4 fracture of  the spine.  Released from Hospital Oct 7th.  Came home, wednesday Oct 8th was sent to see Dr. Hixson for possible radation therpy to the spine.  Dr. Hixson, decided I need to go back to th hospital.  Was re-admitted to Hosptal, in Mobile, Al.  More test, More MRI, of spine, and CT scans with and wothout contrast.  They found changes to brain, the cancer is not in my brain, just changes, those lesions, and possible cancer in the spine.  The first thing they did was pain control.  The specialist said he didn't think they could operate on the L4 because they thought there was evidenve of disease.  Was release Oct 10th from ospital with pain meds and pain hopefully getting under control.  Went back and saw Dr. Hixson after getting out of hospital on Oct 10th.  At that time, I was fitted with a face mask, and lines on my belly.  I just finsihed my first week of radation treatments, for that L4  spine.  They decided first to treat me with radation for the 3 weeks, so I have two more weeks to go.  Then I will be given two weeks to three weeks of rest. Then My cancer doctor is talking about a Braf inhibotor ,two differnt kinds of chemo pills is what I call them.  He wants to see if the these wok, then He said Yervoy.  I still believe God is in control of my life.  I know I have a road ahead of me, doing the best I know how to stay postive in my situation.  Thank all of you for your prayers at this time.

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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ABELL's picture
Replies 2
Last reply 10/17/2014 - 7:02pm
Replies by: tschmith, Bubbles

Friend who was having trouble thinking, walking and talking has now made a turn for the better.

The cyberknife did not  work, the tumors never shrunk and were pressing on new parts of the brain that control motor skills & body movements, thus the issues stated above. They discontinued Yervoy for the time being, until the radiation is done.

The docs kept thinking it was just swelling of the brain until they did another MRI which revealed the fail of the cyberknife. She is coughing a lot & out of breath (tumors in the lungs)

The put her through 10 sessions of WBRT, and after the 3rd one, was welcoming visitors again after a long 2 months of agony. She is able to walk (with a walker), text, talk and make descions in regards to her family and medical treatment again. She seems almost back to her normal (somewhat) self.

She starts chemo next week... Is it false hope that she could be heading towards recovery & a longer life expectancy? Or is this something normally done to keep her comfortable for the time she has left.

All these treatments are so confusing! When you think of treatment, you think of a cure or that they are going to fix her... That doesn't seem to be the case with Melanoma.

Any ideas? Thoughts?

I'm so happy she is finally comfortable again, but want to be prepared for a relapse in her condition.

 

Thanks!!

 

Amanda

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/17/2014 - 6:09pm
Replies by: Janner, Anonymous, arthurjedi007

Hi All:   I feel ridiculous running to my derm every time I "think"  I have a new spot.  I am currently stage 1b, had WLE and SNB on lower back.  The 3 pictures are of the small mole/freckle, location is on my back up higher then my original site.  I really don't recall it being there before but I'm just not sure.  I have had a derm checkup since my WLE and if this was there then it must have been fine.   I realize only a doctor can make an actual dx.   I would just like some opinions, I have the worst medical insurance and already have a 10K bill from the surgery for the WLE & SNB.   As always thanks for your input.  g

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Girl52's picture
Replies 5
Last reply 10/17/2014 - 2:23pm
Replies by: Bubbles, Girl52, Ed Williams

Have more questions as family awaits brother-in-law's results. I am a writer/reporter by profession so always have loads of detailed questions....thanks for your patience.

*Have read that WLE of a metastatic lesion or recurrent tumor has different guidelines than does excision of a primary/first-time tumor. Does anyone know what is done differently? Different margins, some different analysis of tissue?

*Why is in-transit metastasis defined as "late-stage disease" if it is regional and non-nodal, as I've read? Wouldn't surgery to remove tumor and adjacent lymphatic vessels be curative? Or, as in other scenarios, is the danger that other regional lymphatic vessels have been affected and are left behind in the surgery?    

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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BrianP's picture
Replies 1
Last reply 10/17/2014 - 2:04pm
Replies by: Brent Morris

No specific mention of melanoma in this article but seems like it would be applicable.  Hopefully something like this will prove beneficial in combination with the already existing immunotherapies.

http://medicalxpress.com/news/2014-10-human-cancer-prognosis-newly-immune.html

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Anonymous's picture
Anonymous
Replies 11
Last reply 10/17/2014 - 11:20am

Hi Everyone,

I post often, but I'd like to keep this anonyomous.  I have been stage IV for over three years.  The cancer battle is going well, but I am really struggling with side effects.  I do not respond well to rah-rah, cherish every day . . . I do well just plugging away (I smelled the roses before stage IV).  But recently I feel borderline depressed and my marriage/personal life/work/etc., are all struggling.  I have small children and nor much 'me' time, and I am always tired.

Any [realistic] ideas?  Thanks.

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