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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jenny22's picture
Replies 8
Last reply 12/25/2016 - 7:21pm

Has anyone heard from or been in touch with Jamie.....from what I can see his last post was 10/21......

Jamie- if you can, please post and let us know how you're doing.

tks,

jenny

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Kenkussions's picture
Replies 13
Last reply 12/29/2016 - 3:46pm
Replies by: Kenkussions, Anonymous, Michelle820, Janner, jennunicorn, debwray

Hello everyone,

I was just diagnosed (12/19/2016) with Melanoma In Situ on my neck. I have a family history of skin cancer (both my father and grandfather) however, I have found out that all of theirs came back as BCC or SCC not melanoma. I go in for a WLE on 12/27/2016 and am fairly nervous as I know I will be awake and the spot they are removing is right behind my ear (I feel like I will hear everything being cut/ cottarized. Apparently they will leave the wound open for 2 days for testing then if all clear margins I go back in Thursday 12/29/2016 to get sewn up/ more removed if not clear. Those two days do not sound very fun but after researching online and on this forum I realize I just have to get it done. I now know that the "in Situ" is the best possible diagnosis if melanoma is present but I am very fearful that there may be more on my body that we are not finding. Below is what the pathology report came back as any insights would be appreciated. I am just scarring myself reading all of these stories of how often melanoma tends to come back with a vengeance. 

Diagnosis:

Left occipital scalp-

Melanoma in Situ

Note: There are features of a dysplastic nevus as well. Pathologic stage: pTis.

Clinical Data:

Dysplastic Nevus

 

Gross Description:

Received in formalin labeled with patient's name is a tan shave biopsy measuring 7mm x 7mm x 1mm. Specimen submitted in 1 cassette, 2 pieces.

Microscopic Description:

There is a proliferation of atypical melanocytes present in the epidermis with irregular nests of melanocytes aggregated at the dermoepidermal juntion and solitary melanocytes present within the epidermis. The process is confined to the epidermis. These changes represent primary malignant melanoma in situ.

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Anonymous's picture
Replies 6
Last reply 12/22/2016 - 9:30pm
Replies by: Anonymous, keepthefaith11, Janner

After my appointment last week where I was told that melanoma was highly likely in a mole that I had punch biopsied, the pathology report came back with "junctional melanocytic nevus, dysplastic type with severe atypia". My doctor said this was the best report I could have gotten since clinically, what her and the other doctor were seeing was melanoma. I am having it removed next week where she is going to take wider margins than usual (5-6mm) and then that will be sent to pathology. 

can anyone help me understand what exactly the path report means. Could I still have melanoma? The doctor basically said, it is an atypical mole and cells that are changing and we're lucky to have caught it now. 

Im feeling so relieved but still need some clarity. This has been the worst week of my life thus far waiting for the report since I have a 8 week and 18 month old. Any input would be greatly appreciated.

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_Paul_'s picture
Replies 24
Last reply 12/25/2016 - 8:44pm

That's what it says on the timeline. 4 days form the TIL and 2 days into chemo.

The biggest problem to date has been pain control. The mel is causing a lot of pain on my right side making getting up and down, well, painful. During  day one I was getting chemo at the clinic, then after a very long day going to the hotel to crash.  But I could only have oral pain meds at night, and there was some throwing up, so I was a bit of a mess the next morning.

Anyway the next day they were unable to keep the nausea under control so they sent me to the UW Hopsital full time. After 5 more days of chemo I go to the ICU here for the TIL.

They say the first two days of cyclophosphamide are worst the the next five days fo fludarabine. My first dose of the fludarabine is in 90 mins.

However I am still cracking jokes and some of the nurses even laugh.

- Paul

 

To exist is beyond fantastic.

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Bubbles's picture
Replies 2
Last reply 12/22/2016 - 5:05pm
Replies by: MaPerny, jennunicorn

...so sayeth many melanoma reserachers.  Here is a copy of an interview Weber gave this month that breaks it down.  (Great thanks to Eric and B for their melanoma snooping today.  Lots of slides from a PrimeOnc presentation that presents data on many of the combo's Weber addresses...when I get the chance!!!)

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/the-future-for-melanoma-treatment.html

Blessings to you all this holiday season.  We have all borne the scars of melanoma.  However, we will move forward...TOGETHER!!!  love, c

PS...if you're sick of melanoma and just want to eat cake!!!  ~  the post below this one is perfect!!!  :>)

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Marina_fonseca's picture
Replies 1
Last reply 12/22/2016 - 2:30pm
Replies by: Tim--MRF

Hey everyone! I am new to the forum and have just gotten the results of a biopsy I had 2 weeks ago. 

It says my mole is 1.2cm X 0.9cm X 0.7cm and has an irregular epidermal surface.

It also says in the microscopic analysis that:

- histological cuts show fragments of skin with proliferation of fusiform or dendritic cells, intensely pigmented. Distributed in dense collagen.

- and that the borders are clean.

 

the final diagnosis presented (in the biopsy) is a blue neavus.

I sent my dermatologist the results and she said that they're normal and I shouldn't worry. I'm scared because the results seem so scientific and weird and I don't know how to interpret them.

Has anyone else had any results similar to this?

Also, the pathology report was really short. It had 3 lines written and it didn't have any of the markers tested and any other information. I thought that was a bit odd.

Anyways, 

Should I get a second opinion on the results? I have a family history of skin cancer (mostly melanoma) and I know it's not something to play with.

thanks for your time :). 

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adriana cooper's picture
Replies 13
Last reply 12/26/2016 - 12:10pm

I am sad to read of the extreme challenges many are having recently. Luckily Adriana has been doing relatively well recently and restarted pembro two weeks ago. We greatly appreciate the continuing support from all on this site.

Remembering to live life, our wedding is on Friday at 2 PM PST and invite you all to our live stream.

We hope you can visit our wedding live stream on Friday Dec. 23, 2016 at 2PM at ActionPhotosNW.com

Happy Holidays, Rob and Adriana

Adriana

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rabbits68's picture
Replies 3
Last reply 12/23/2016 - 12:08pm

In September I had to stop MEK due to progression. After severe hip and leg pain, a scan showed a fracture in the top of my femur and I now have a titanium rod to stabilize that leg. I started Keytruda and have had 5 doses. My back and legs hurt so bad most of the time and I'm getting anxious and concerned. Should I be I insisting on a scan or is it too early? I do have spine and pelvic mets that had stabilized on MEK. It was amazing how fast things progressed for me after MEK stopped working. Trying to stay positive and keep my eyes on Jesus.

LisaG

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dochas's picture
Replies 10
Last reply 12/24/2016 - 7:43pm
Replies by: dochas, Gene_S, debwray, Hukill

Hi everyone

i have been lurking for a little while, reading your stories.

i am writing on behalf of my dad, who first started feeling ill in November, was then diagnosed with metastatic melanoma on 7 December and started treatment with his first infusion of ipilimumab last Friday, 16th.

we are all very worried but at the same time relieved that some treatment has started.

however he is so exhausted, a fatigue far beyond anything he has ever known, and I wondered if anyone could share from their experiences whether this possibly might improve over the next few weeks before his second infusion. He is trying to stay so positive but this fatigue is really getting to him. So looking for some hope.

thank you x 

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Bradley75's picture
Replies 10
Last reply 12/22/2016 - 2:35pm

I haven't posted much recently because thisis all moving so fast.  In August, I moved to stage 4 with a small tumor in the fat near my right kidney.  Surgury went better than expected and the tumor was removed.  In late October, I had back pain that I attributed to a pulled muscle.  I went to my primary clinic and they agreed an put me on pills to treat the symptoms.  Well, the pain didn't go away.  It was progressively getting worse and it was time for my next round of PET/CT.

Thursday the 14th, I had my scan at 9am.  By 2pm, we were discussing the tumor pushing on my spine around T-5.  It is about a 3 cm tumor growing in and around my 5th rib on my right side.  The scan also showed another small spot on t-1, minimum of 6 lung mets, and two soft tissue spots near my thyroid.  That whole thing sent into motion a whirlwhind of activivty.  Spine MRI, radiation evaluation, and radiation simulation all done Friday the 15th.  They hit me with my only scheduled radiation treatment on Monday to knock the tumor back off my spine.  I went from what I thought was NED to a whole different world. 

I met with my onc yesterday to discuss immune therapy.  I have read so much about all the various things posted here, but it takes on a whole different meaning when faced with it.  The recommendation I received yesterday was IPI and NIVO combo.  I think he called it Yervoy and Opdivo combined treatment.  It seems like my best option based on all the research he showed me, but I am scared.  This is kind of a big decision and I need to make sure I am comfortable with what I decide.

I wish I could post positivity on here today based on what Josh and others have posted.  The best news I can give is that I pray for everyone on this board and those dealing with this disease every day.  I appreciate any insight or thoughts anyone would be willing to share.

Brad 

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Aloha14's picture
Replies 2
Last reply 12/22/2016 - 3:14pm
Replies by: cavsnut, Michelle820

My surgeon seems anxious to have me do the ultrasound of my lower leg right away and I don't mind. I guess she just wants to see what it looks like right after surgery to remove the tumor. The lab indicated that all of the melanoma was removed. Anybody else getting ultrasounds after surgery and periodically for a year after? I'm also getting the Pet Scan next week. 

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jenny22's picture
Replies 21
Last reply 12/27/2016 - 9:31am

Good morning everyone-

Its been a tough few days on the board.....after reading recent posts from Josh, Paul, and others....(and wondering about Jamieth29)  I thought it might be a good time to for another LONG TERM Stage III and IV survivor roll call.

Any long term STAGE III survivor stories....anyone after multiple recurrnces?

And any long term Stage IV survivor stories?

Melanoma is one tough battle, and this time of year is often tougher.

Hoping some of the longer term folks will chime in...those good stories are so encouraging and  a great reminder for everyone.

Wishing everoyne happy holidays, and lots of hope for a healthy 2017!!!!!

LONG TERM III AND IV SURVIVORS PLEASE POST!!!!!!

 

 

 

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Mikers's picture
Replies 2
Last reply 12/27/2016 - 4:29am
Replies by: Mikers, debwray

Hello.

Decided to rechallenge PD1 with Nivolumab this time. Meanwhile LMD disease is symptomatic again - frequent vomiting and absolutely not possible to eat (though drinking is normal). 
Had only one Nivo infusion and thinking of trying low dose dexamethasone to control nasea and vomiting. I wonder is it possible to have it without strong suppression of PD1 effect (if it still will be working taking into account that pembro has already failed).
I've seen that in clinical trials they usually demand level of dexamethasone not higher than 2mg.

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Terrified's picture
Replies 24
Last reply 12/27/2016 - 8:34am

Unable to sleep, I sit here in the hospital listening to my beautiful husband breathe. Sometimes labored and coughing, at other times more restful. He is the best man in the world. I know that a love like ours is rare and I am so grateful for that gift. But it also makes the pain of seeing him like this that much worse. 

He was admitted for nausea/vomiting and confusion. He has progressive melanoma in his lungs and abdomen and bleeding and swelling in his brain. He has not responded as well as hoped to high dose steroids for the swelling and Thursday will undergo a craniotomy. Then after recovery from that he will start IV immunotherapy. The worry is that starting immunotherapy now may increase cerebral edema and need for more delay of treatment or even herniation. 
The oncologist believes this is our best plan, but admits that his rapid advancement of disease is not reassuring. He failed MEK/taf after just two weeks.
Always the better person, he does not rail against God for this happening. I am not so inclined. Those of you who believe in the power of prayer, please pray for a miracle. 
 
Judy 

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/21/2016 - 9:14am
Replies by: Hukill

I have been receiving nivo every 2 weeks since 11-4-15. I also had yervoy in conjunction with nivo the first 4 doses. I have been stage 4 since 2-2015. I started with taflinar and Mek until I progressed.

My whole body pet scan on 10-15-16 was totally clear. Last week my ldh went up to 399. It had been jumping around between 189-199 and even up to 214 3 weeks ago. My oncologist thinks everything is okay but since I am getting close to time for another scan and my concern. I had my whole body pet yesterday and go to the doctor tomorrow for my results. I know I am very blessed to be doing well but wanted to see if other people had had ldh go up and still have clear scan.

Thanks

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