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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_Paul_'s picture
Replies 13
Last reply 2/3/2017 - 6:48pm

Hey folks,

I have been in touch with Josh, and told him people have been asking about him. I am here to provide an authorized update from the man himself.

He has completed the initial 2 days of chemo which involve receiving the harshest of the two drugs - cytoxin. It is making him nauseous but no vomiting (3 cheers for spewlessness).

His early TIL numbers from the lab are looking good (hoping for a 50B yield) and the cells are viable.

His spirits are good and his worst thing is the boredom (boy can I relate to that).

I will post an update on myself a little later after I take care of a bunch stuff that has been accumulating on my desk for the past couple of weeks.

- Paul

To exist is beyond fantastic.

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Shaneswife's picture
Replies 4
Last reply 2/3/2017 - 10:18pm

My poor husband has had set back after setback. His tremors and headaches and cramping just won't go away. He was on a dex taper and they just increased back to 8mg from 1mg and the headache went but not the tremors. Also unable to eat. Gets an immediate feeling of fullness. But liquids go down ok. Onc believes that one of the brain tumors or inflamation surrounding a tumor is causing his brain to incorrectly interpret signals from his stomach. So they keep increasing the steroids. He's been on 16mgs since November except for the taper the past few weeks. Realistically how long can you stay on high dose dex?

PS they stopped his dabrafenib and tramentinib because of all the symptoms and vision changes.

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Bmine102793's picture
Replies 9
Last reply 2/2/2017 - 4:54pm

So doc said at best my fiances melanoma is stage three untill we get scan we dont know if its worse he said stage 3 at best cause biopsy of lymphvnode was possitive. We have twp weeks full of doc apps which is a damper on his job and our financials. With treatment and doc apps do most of you take disability or ss?

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/1/2017 - 3:45pm
Replies by: Tim--MRF

I am 20 years old and have been diagnosed for the first time with melanoma in two different sites in the past three weeks. I just dont understand why this is happening to me, i have never been to a tanning bed, i am not a sun worshipper and i have no family history of melanoma, so why am I (a healthy 20 year old female) having this? My doctor keeps taking off more moles and they keep coming back as positive for melanoma. Is there anyone with insight on what is causing this?

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aprilrose's picture
Replies 1
Last reply 2/1/2017 - 12:53pm
Replies by: Janner

34YO Female.  I was diagnosed with melanoma 2/2/15. The official diagnosis reads melanoma, level IV, 0.56 mm tumor thickness, non-ulcerated. This was on my left shoulder and I did have a lymph node biopsy that came back negative. Lately I've been having some weird symptoms so I decided to look back though my records and do a little research to see if I need to be seen again. I've had the report here this whole time from my surgery but I just read through it last night and I'm having a hard time interpreting it. This is the comment below the wide local excision says
There is a tiny focus in block A4  suspicious for, but not diagnostic of, a satellite metastasis of melanoma in the epidermis. Immunohistochemical strains were attempted. Unfortunately, the suspicious focus was cut through precluding interpretation of the Immunohistochemical stains. External controls reacted
appropriately.
My surgeon never told me about this so is it something I should be concerned about? I noticed on the official report they left the area blank where they were supposed to put what stage I am. I'm wondering if they even know.

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jahendry12's picture
Replies 6
Last reply 2/5/2017 - 5:45pm

Hello - I have 2 questions I wanted to pose to the group regarding the TAF/MEK combo.

 

1)  Has anyone NEVER had a fever but still responded?

2)  For those that did have fevers, how long did it take for them to start?

 

Thanks for any input you can provide.  Much appreciated!

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/1/2017 - 3:55pm
Replies by: Tim--MRF

Does anyone have experience with T-Vec? Curious if there are restrictions for someone who already has the herpes virus?

No One Fights Alone

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Rocco's picture
Replies 14
Last reply 2/3/2017 - 1:03pm

Had my annual scans and follow up this week.  CT and brain MRI are again clean.  Thankful, grateful and feeling blessed tonight.

Hoping others in the fight will get some positive news this week.  Hang in there everyone!

-Rocco, Stage IV in 2005, Ipi responder in late 2008, NED since 2009

Luke 1:37

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Aloha14's picture
Replies 3
Last reply 2/1/2017 - 7:48pm

Today I had the 3 seromas drained by the Radiology doctors under ultrasound guidance. The doctors said there are 3 distinct, separate seromas and they don't attach together. So when the Surgeon drained the largest one the last two times which filled back up right away, it didn't effect the other two. Anyways, this time it's been 6 hours since the 3 were drained and 2 of them have filled up again but are definitely smaller than has been during the past 6 weeks. The other one doesn't seem to have filled up again, yeah! 

I don't understand how these can fill up so fast but they can't drain. The Radiology doctors said that these won't drain on their own from what they can tell from the ultrasound pictures. I wonder what happens if these never completely drain? I watched as these were drained and the syringe for the largest one was red colored not yellowish like the last two times. Does anyone know what that means? Is it bleeding inside the seroma, from the needles going in or is my lymph fluid now red?? Plus, the one that so far hasn't filled up was also bloody and had dried blood in it. Sorry for the gory descriptions. This stuff is driving me crazy. 

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JustJaren's picture
Replies 5
Last reply 1/31/2017 - 10:48pm

Found a suspicious mole on upper back thigh, came back as melanoma. 

0.86mm, no ulceration mitosis of 1.

Great news, right?

WLE with SNB revealed "a few" cancer cells. Waiting to be scheduled for a full node dissection. 

Looking for any similar stories, recovery time for this next surgery, expectations. 

ANY info. 

I am,sadly, mostly concerned about finances. Should I file for short term disability NOW? What is recovery after complete lymph node removal?

What are my chances of getitng lymphedema? (very concerned about this)

What is the PET and brain MRI like?

I am so scared. sad

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laurelmarie1558's picture
Replies 9
Last reply 2/1/2017 - 1:15pm

Husband had a nasty mole on back that didn't look right. I kept asking him if the doctor was looking at it. (He goes in every 6 months bc of high blood pressure). He said the doctor said it looks fine. He wanted to see what it looked like so I took a pic of it so he could see it. I was on a Facebook group, "grew up in iowa". There was a thread that said post the last pic u took. That was my husbands mole. Many many people said that mole looks like cancer. So, I plead with him to just get it removed. He did. Came back malignant melanoma. We were shocked. Biopsy report said, 2.5mm,margins involved, mitotic rate 2/mm2. He had a PET scan that came back CLEAR. He had surgery to remove the melanoma and took some lymph nodes out and was told no sign in signigant pathological abnormalities identified. Phew.... now we are seeing a oncologist on Thursday and I am wondering if u have suggestions on what ?'s to ask and if u think that he will want to do any more treatments....

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Bmine102793's picture
Replies 6
Last reply 2/1/2017 - 11:16pm

So long story fiance had a mole on aem that grew large and tumored and with in a few months of that tumor growing his lymph node under armpit grew very large. I then sent him to my doctor who then sent him to a surgeon. The sugeon biopsied the growths and they came back positive for melanoma. Today we saw an oncologist who said sense it spread it was at best stage 3 sense it spread to the lymph node. The next few days my fiance will habe a pet scan and mri done to see how far it has spread. He semi explained immunotherapy. And next tuesday we follow up fpr results. I plan on going to clevland clinin for treatments and care. But i was curious about treatment like what has been most successful and side affects and how it all works.

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/31/2017 - 7:53pm
Replies by: Bubbles, MaPerny

Hi Josh,

Not sure if you decided to go ahead with TIL or not, if you did I believe you are starting the process today so sending you lots of luck and prayers.

If not, then I hope you have found the path and plan that works for you.

Maria

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AshleyS's picture
Replies 15
Last reply 2/3/2017 - 7:04pm
Replies by: Terrified, landlover, AshleyS, Anonymous, BrianP, atsea, Nemesis, Fen, Nanners10

Hey everyone,

It's been awhile since I've posted - there's such a delicate balance between being a "cancer patient " and a "normal person." Admittedly, it's a lot easier to fall into the latter category when you're doing well.

Quick history:

At 29 years old I had a changing mole on my left calf during my first pregnancy in 2012. My OB said not to worry; skin changes are common during pregnancy. About 7/8 months later, I had the mole removed. It was Stage 1b melanoma. I had a wide excision and SNB. Margins were clear and there was no lymph node involvement. I also had a clear PET. Four months later I had another very thin melanoma removed. After getting every doc's "blessing" I became pregnant again. In July 2014, at 20 weeks, I felt a lump the size of a ping pong ball in my left groin. Two days later I had it biopsied and it was metastatic. I had a complete node dissection while I was 23 weeks pregnant at Mayo Clinic. They found 4 total affected nodes. I also had MRIs without contrast, because of my pregnancy. Those were clear. We had ultra sounds every other week to check the placenta (since melanoma is one of only 3 types of cancer that can spread to baby). I refused scans and the treatment (my docs wanted to do some crazy, ineffective drug). I did agree to be induced at 37 weeks and my son came healthy in December 2014. I had scans 5 days later. Mets all over my liver, 1 on my spine, and 4 subcutaneous spots. (I was 31 by this point.) I found out I was BRAF negative. Mayo put me on chemo. I failed it, came on this board, got a ton of advice, and went on the (then trial) Ipi+Nivo combo at MD Anderson in March 2015. Long story short, I received NED status in November 2015. I will finish my Opdivo infusions in about 8 weeks.

So, I have decided to undergo a tubal ligation. My brain knows this is the right choice, but my heart is hurting. My doctor at MDA wholeheartedly believes that my pregnancies played a part in my diagnosis. So I get it. However, I didn't get to enjoy my last pregnancy and I so wish I could have another chance. Again, my brain reminds me how lucky I am to have two children (it took us 3 years to have our first) but I'm still sad. I think some of my sadness stems from the fact that this choice has basically been made for me.

As a side note, I know my husband could have a vasectomy. My doctors don't get it and my family doesn't get it, but I don't want him to do that. I feel like the folks on here know where I'm going..... Melanoma is scary and I know it could return anytime. We're still young and I want him to have options. 

I know things could be so much worse, but this has weighed on me and I feel like my wonderful friends and family can't understand. So, I'm hoping for a little pep talk from y'all!

Ashley 

 

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snow white's picture
Replies 17
Last reply 2/2/2017 - 1:36am

Spent the Day with Mom and Dad at The Angeles Clinic. First things first. Dad does not have any type of fungal infection.  Sadly, he does have signs of LMD.  As I understand it, there was no melanoma in the actual fluid, but there was an elevated protein.  She feels she has enough evidence with the MRI and testing to determine that he indeed is positive for LMD.  Interestingly enough, she is not overly alarmed by it.  She said it is very very early, the size is like a grain of sand.  She feels that it is treatable.  She said "If I am worried, I will let you know and be straightforward with you", Dad said "so are you worried" and she said "no at this point I am not worried".  The plan is : Yervoy (he had his first infusion today), he will get a MRI on his spine this week, next week he will get a blood test to determine how he is doing, he also started on Thyroid meds as his thyroid is showing low and she doesn't want it to get out of control, so he will be on a very low dose.  He will get his 2nd infusion and at that time they will re-scan the brain and body to see what happening.  We are thrilled that Dad can have some of this done close to home, such as blood tests and scans.  We have all that is needed in the way of medical facilities about 7 minutes from the house, so that will be good.

My thoughts : My stomach has been in knots since the Spinal.  Fortunately, I was able to have a private conversation with his doctor yesterday on the phone (Sunday).  I am very confident in her ability to lead us on the right path and I trust her when she says that now is not the time to worry.  Dad is doing well, and hopefully he will tolerate the news drugs.  I am going to focus on ALL of the positives and just be thankful that we found a great doctor that has our best interests at heart.  I am going to will myself to take it a day at a time, even if its the hardest thing for me to do.  Dad is alive! and I am grateful. That is  all I have for now.  I hope all of you are holding on tight, I think of you all often and am grateful for all of the support that you have given me.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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