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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StephyD83's picture
Replies 15
Last reply 11/1/2014 - 4:00am

Hi Everyone-

I was DX with Melanoma In-situ in March of this year. To give you the history I had a severly atypical mole on my forehead that was removed with a shave biopsy in Nov of 2012 & my Derm at that time told me it was begin & no further treatment was needded. I only just found out that it was actually severly atypical & the Pathologiest  recommened that it be removed via completed excision. This was not dont & it grew back. I went in to my new Derm in Feb of this year & she sent me to plastic suregy for removal & 2 surgeries later it was completly removed. I had found a lymph node in my neck on the same side as they Melanoma so I went to teh Dr & they sent me to Oncology PET Scan, biopsy, etc. The 1st PET was completly normal in April 2014. Now I just went yesterday for a follow up PET & this is what was seen. 

Ther are various izes axillary nodes seen with slight uptake the most prominent 13 x 7 mm in the left SUV 1.96 &  the most prominent in the right 9 x 6mm  SUV 1.61. There is increased uptake in the adnexa slightly larger in the right SUV 5.23 then the left SUV 3.40. There is a linear are of slightly higher uptake at the superior endplate of the bodies of the spine, the highest uptake is seen in T11 SUV 4.03. My referance SUV for mediastinal blood pool is SUV 2.09, Liver SUV 3.51, & Spleen SUV 2.83. Also, they did see several lymph nodes in my cervical region & in my jaw & under my jaw with no abnormal uptake.

 

Does anyone know what this means? Thank you in advance!!!

 

Thanks!

Stephanie

 

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sharon0803's picture
Replies 1
Last reply 10/29/2014 - 9:16am
Replies by: Anonymous

Hi All,  I have not been on for a while.  I do need some help please; I am looking for a Melanoma Dermatologist in the NW Chicagoland area, even the near suburbs.  

 

Any suggestions would be greatly appreciated!

 

My onc has been doing the screening , but I believe I should be seeing a dermatologist for routine checks.

 

Thanks,

 

Sharon

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Owl's picture
Replies 7
Last reply 10/30/2014 - 10:48am

Dear all,

I just want to share some good news with you and give some hope to others.

My husband is in EAP Pembrolizumab (Europe) and just had his 12 week scans. The result is more than we hoped, everything (2 lymph mets in Abdomen and two huge tumor as well as smaller ones in neck/face) is almost gone. The scan report is written very technically, even the conclusion, but the doctors assured us that only one area is still visible, could be tumor rest or scar caused by neck dissection.

He is doing really well and has no side effects. The first weeks though he was not feeling good. He had a huge swelling in tumor areas, bad pain, could not sleep...he was on strong pain meds for about 4 weeks. It slowly improved and is gone since week 6 or 7. We could also see the tumors shrinking. This was the first time I was happy that they were visible. Even his facial nerve is slowly recovering.

It seems that Pembro / Keytruda is his magic potion and I hope it will be for many others.

All the best, Jenny

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Lisa - Aust's picture
Replies 1
Last reply 10/29/2014 - 9:37am
Replies by: Owl

Hi Everyone,

Just looking for some info/experiences/evidence!

My husband Craig has been on MK-3475 for around a year now and has luckily had a complete response.

His oncologist has raised the possibility of him coming off the drug, monitoring and re-introducing if he has a reoccurance.

At this stage it is just an option he has offered (with permission from the drug company), giving us some anecdotal evidence of a few people coming off and continuing to be stable/remain clear (He mentioned mainly people who have come off due to side effects etc, so the discovery of the ongoing response has actually been incidental). Theoretically he is thinking that perhaps the drug has 'done its job' - but obviously it hasnt been around long enough to really make a statement like that.

Does anyone know of any evidence out there/own experiences etc regarding this? 

If we went ahead, I think my hubby will be the first person in our location (Perth, Australia) to go down this path. At this stage, I am not sure if we want him being the guinea pig!

Thanks,

Lisa

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Steve2142's picture
Replies 8
Last reply 10/30/2014 - 11:19pm
Replies by: paul Lyons, kalisama, Anonymous, MattF, Mat, Bubbles, Steve2142

I met with my oncologist today after my pet scan and he advised me that my melanoma had "exploded" in a short time and has spread to my lungs, liver, and other cutaneous sites.  The number of nodules was innumberable.  I am being tested for the BRAF gene and if I have the mutation, he is suggesting a combination of Tafinlar and Mekinist.  It would be great to hear if anyone has undergone a similar treatment regiment and what their experiences have been and what side effects they experienced.  Thank you.

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Anonymous's picture
Anonymous
Replies 7
Last reply 10/29/2014 - 2:43am

Can anyone give me some examples of what a recurrnce located in your WLE would look like.   I had a WLE at the end of June and recently noticed a small bump emerge in the scar.  The bump is red so it makes it hard to tell if it just a normal part of the scaring process.

My melanoma dx has made me a constant worrier.

 

Thanks

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Kdw2012's picture
Replies 11
Last reply 10/30/2014 - 11:35am

My Doctor just called yesterday and I have 3 brain tumors. This explains the recent very bad headaches.

I am wondering what treatments are done for brain tumors?. I want to go to my appt on Thursday with info.

The doctor prescribed Dexamethasone for  swelling. He said we will have to do radiation also, but this was just over the phone yesterday and we will be discussing more at my appt.

thank you

Kim

 

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RJoeyB's picture
Replies 1
Last reply 10/28/2014 - 3:49pm
Replies by: DZnDef

New video (episode 13) in OncLive's melanoma series:

http://www.onclive.com/peer-exchange/metastatic-melanoma/Surgery-Following-Systemic-Therapy-in-Melanoma

Of great personal interest to me, because I've been at this particular game of "whack-a-mole" (pun intended) for awhile...  following IL-2 and TIL, I've had several surgeries (two to leg bones, one craniotomy) to resect single mets that for whatever reason didn't respond (the bone mets) or ocurred long after systemic treatment (the brain met, 2+ years after TIL).  The approach has worked for me thus far, using systemic immunotherapies early on and addressing single mets as they've occurred with either surgery or radiation (or both), keeping the newer systemic agents available should the need arise.

Joe

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Vmarie_89's picture
Replies 2
Last reply 10/28/2014 - 4:10pm
Replies by: Vmarie_89, Janner

Im scared Im unsure of what I have on the bottom of my foot I use to give myself pedicures and from what I can honestly swear I remember I did have a tiny mole where there is now what looks to be like a mole but spread! ?!? I have no idea how to upload a picture to show you but im pretty much freaking out I dont know if medi-cal covers for any type of dermatologist bills plz plz help!

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Adrian G's picture
Replies 3
Last reply 11/1/2014 - 11:53am
Replies by: oldblue, arthurjedi007, Anonymous

 

 

Hi,

 

my sister has been diagnosedwith malignant melanoma in 2009 stage 3. She had 3 surgeries to removed the primary and lymph nodes. After that was receiving chimo, interferon and radiotherapy.

This august on the last CT scan a lymph node (between the kidney and spleen) was looking suspicious on the image. 

She had a surgery to completely remove the lymph node (fully encapsulted and tested positive for melanoma). Everything else looks clean. 

Does she need any adjuvant therapy after sugery? 

 

Many thanks

Adrian

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kalisama's picture
Replies 2
Last reply 10/29/2014 - 11:26am
Replies by: kalisama, Bubbles

Has anyone seen any specific data on this yet? 

Thank you in advance,
kali

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mary1233's picture
Replies 3
Last reply 10/28/2014 - 11:17am
Replies by: Anonymous, Janner, mary1233

I am currently in remission for mucosal melanoma, so I may be overreacting.

I have two sisters who are dealing with moles removed by dermatologists who found cancer "in situ". They are planning to follow up with the dermatologist.

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GAngel's picture
Replies 12
Last reply 11/10/2014 - 11:28am

Hello all...just wanted to share our great news that Rudy continues to remain NED. He is still on the Tafinlar/mekinist combo taking it intermittently as well as taking cannibas oil daily. We are so thankful and blessed. We want to encourage all of you to keep on fighting and never lose hope. Keeping positive is so important. 

God bless you all...we are praying for you.

Gina and Rudy Rangel

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Anonymous's picture
Anonymous
Replies 9
Last reply 10/28/2014 - 10:01pm
Replies by: Emcjones1, Bubbles, Anonymous

I just did my second CTC which measures how much melanoma is in the blood stream. The first one i did in June came back at .75 which according to the doctor meant that I had a very small amount of melanoma in blood stream and a very low risk of distant spread.

The second one however has increased allmost 6 fold to 4.25 whcih now puts me at grave risk of distant spread or recurrence. Now I dont know what to do and I am really gutted.

I am currently stage 3 but it seems like things are getting worse quickly although i still feel really good. Apparently the test which is the Maintrac CTC test  has a very good predictive value and is usually six months ahead of what happens.

I dont know what therapies I should try or what i can do now. They only thing they are offering is chemo or interferon which I wont do. 

 

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Girl52's picture
Replies 19
Last reply 11/3/2014 - 6:28pm

My brother-in-law had followup visit today with general surgeon who did his WLE and SNB recently; like PET scan, nodes clean. Path report had said, "Diagnosis: metastatic melanoma" of the lesion on his arm. BIL has no plans to see an oncologist, much less a melanoma specialist, though folks here and other research indicate that he's a Stage III.

If staging information isn't cited specifically on your pathology report -- and neither your dermatologist nor surgeon use this precise language -- how do you know you're a Stage III? How do patients normally get this information. Can it happen that no one ever specifies this...that any/all doctors a patient sees assume that someone else has given him or her this info, or that he or she will arrive at this conclusion on their own? 

Surgeon didn't refer BIL to an oncologist, but did say he needed to be very alert for ANY skin changes, and any pain, fatigue, or other body signs that might indicate cancer spread. If they tell you this much, can't they come out and say, "Stage III?"   

    

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

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