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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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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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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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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JerryfromFauq's picture
Replies 1
Last reply 10/16/2014 - 6:59pm
Replies by: Julie in SoCal

I will be late for tonights chat.  We were planning on chatting at 8 pm.  Some others may be here then.  i have to be out until around 9 pm.  Hope to jopin the chatters then.

 

Jerry

 

I'm me, not a statistic. Praying to not be one for years yet.

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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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DMU's picture
Replies 3
Last reply 10/16/2014 - 2:22pm
Replies by: Anonymous, DMU

Someone wanted to know the diagnosis.

0.1mm Breslow thickness, Clark level 2, present at lateral edges

has anyone had a similar  melanoma? If so I would like to know how yours turned out after surgery.       Thanks

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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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penelope10's picture
Replies 2
Last reply 10/16/2014 - 5:54pm
Replies by: penelope10, Anonymous

I am a 36 year old male with a family history of malignant melanoma.  Since I was 17, I have seen a dermatologist and have had five excisional/shave biopsies that have all been benign. Over the last 19 years, I have been active duty in the US Navy and have moved 8 times. Because of this, I have never had continuity of care and seen a plethora of dermatologists. No pictures have ever been taken of my many moles, and it has usually been up to me or my wife to notice any changes. In September,  a CT scan noticed a 1cm non calcified nodule in my left lung and my radiologist ordered a PET/CT which I had yesterday.  Good news was the pulmonary nodule showed no hypermetabolic activity. But the scan noted the following..."There are multiple foci of increased hypermetabolic activity with associated dermal tissue thickening on CT images: right back at the level of T7 with max SUV of 5.6, right back at the level of L1 with max SUV of 2.9, left back at the level of T11 with max SUV of 2.6, bilateral upper flank regions with max SUV of 2.2 on the right and 1.1 on the left, right upper medial thigh with max SUV of 4.6. Recommend clinical correlatiom. Differential include infectious/inflammatory process, however, cannot exclude malignancy." I have normal looking moles at all of these locations. I am not asking your opinion on whether I have melanoma or not. My dermatologist will do that when I see him in two weeks. Until I see him, I was just curious if anyone on the forum has received their initial indication of melanoma via PET/CT which led to unsuspecting moles to be biopsied? Any recommendations for questions to ask my dermatologist with the above test results? Thanks in advance!

 

 

 

 

 

 

 

 

 

 

 

 

 

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DMU's picture
Replies 0

I had surgery on 10/15/2014. Have stitches across entire lower back, took about an hour or so.  Surgeon said as long as biopsy and all other tests come back fine I will be ok.

Pain is not as bad as I thought it would be. I keep going from hot to very cold. Tired

Hope all this information I have posted helps others who may be scared and have them be able to see hope for a long and healthy future.

:)

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Scientists have found 'breadcrumb trail' molecule that causes melanoma to spread

Apparently there’s a fatty molecule that irresistibly lures skin cancer cells around the body.

http://home.bt.com/news/sciencenews/scientists-have-found-breadcrumb-tra...

Scientific research has identified a type of fatty molecule that can make cancerous melanoma cells unusually aggressive and mobile, allowing it to spread round the body

The researchers have been looking at a fatty molecule known as lysophosphatidic acid (LPA).

Tests on lab cells and mice revealed how melanoma cells start their journey round the body by breaking down a nearby source of LPA.

Once they have depleted their original supply of the molecule, the skin cancer cells move out of their tumour in a bid to find more. They then move from molecule to molecule as if following a breadcrumb trail around the body.

I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 1
Last reply 10/15/2014 - 9:13pm
Replies by: Happy_girl

My Wayne declared Victory over Melanoma through his faith in Jesus Christ at 7:46 am this morning ! He is with Jesus now .

 

I'm me, not a statistic. Praying to not be one for years yet.

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Roncole11's picture
Replies 6
Last reply 10/16/2014 - 5:04pm

I have been diagnosed with metastized melanoma in my lung, I also have Crohns Disease and have been on immune suppression meds for about 15 years. Because of the Crohns, I am unable to take yervoy.

Does anyone else have this problem? I have been to Johns Hopkins, and the doctors there were not a big help.

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Girl52's picture
Replies 5
Last reply 10/17/2014 - 9:48am
Replies by: Janner, Linny, Girl52

My BIL had WLE and SLNB yesterday of tumor just above his left elbow. Surgeon said second path opinion concurred with first, with diagnosis of metastatic melanoma. But recent PET scan clear. Primary might be regressed skin tumor, surgeon said, and "I won't be surprised to find cancerous nodes, and won't be surprised not to." They'll also check for in-transit metastasis. When results available, I hope surgeon offers staging information and recommendation to see oncologist, as BIL has resisted finding out anything about melanoma or consulting an oncologist.

BIL, in his mid-50s, already has a stent in renal artery; high blood pressure; and atrial fibrillation. In fact, surgical team yesterday noticed the a-fib during procedure and asked if BIL was seeing cardiologist. He isn't. Does an underlying cardiac or other health issue make possible systemic treatment trickier, or harder to tolerate?

I have read that, with metastatic melanoma diagnosis but clear scans -- and with or without node involvement -- some patients take a watch and wait approach. But do many decide on adjuvant therapy?

What are chances that BIL's elbow lesion was the only metastasis from unknown primary....that there are no micrometastasis elsewhere that might be nipped in bud with adjuvant treatment?

 

 

 

 

 

 

 

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

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Patina's picture
Replies 4
Last reply 10/16/2014 - 9:18pm

More good news to share...

My Mom, who is stage IV with 25 brain mets treated, had her 7 & 6 month checkup after her her last treatments with ipi and gamma knife radiation. - No CT scans. Just MRI scans for her brain.

Everything is really going well. There are no new lesions and the brain mets are stable. Still no known cognitive issues or anything else to report. If things remain the same at her next MRI she will be cleared to drive some time in December. - 1 year and one day after her first treatment.

Keep your fingers crossed that these results hold. She can't wait to drive again. - Everything else is excellent.

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