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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Anonymous's picture
Anonymous
Replies 1
Last reply 8/4/2016 - 11:43am
Replies by: jennunicorn

I have some questions about screening for melanoma.  I want to start by saying I always have been anxious about my health and as of late Melanoma has worried me.   Melanoma does not run in my family.  I have dark hair and somewhat dark skin but at 35 I never wore sunscreen and this has me bothered.  I had a few decent sun burns growing up but they were rare.   My main concern is that I have a good deal of moles on my body. They are pretty tiny but I worry about them.   I have been to several dermatologists and none of them have ever used a dermascope on me. 

I went to the University of Penn and expressed my concern with them.   The first doctor examined my moles by eye and said everything looked good.  He then went out and brought a team of doctors in and they examined me again.  They said everything looked good.  I asked them all about using a dermascope and they said it was not necessary.  I asked them about mole mapping and they said that I did not need it.  

The doctor told me to come back in a year and that ultimatly I was low risk for melanoma.  I reminded him of my sun exposure and use of tanning beds when I was in college and he said that raises your risk slightly but more than likely you will never see melanoma.  I then asked him about the number of moles I probably have about 150 tiny ones putting me at a higher risk and he said again this raised your risk minimally.  He said he sees people with way more moles than me and most of them will never see melanoma. 

This board is very knowledgable and I wanted to see if this was accurate ?  Thank you for your time.

 

 

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Ajwells's picture
Replies 5
Last reply 8/4/2016 - 4:10am

I read a lot about Yervoy on this forum. I see mostly "I didn't have any side effects" or "my side effects didn't start until the 3rd infusion". 

To be upfront this is adjuvant treatment.  And a lot of what I could find are older articles from like 2011 during clinical trials  

As I lay here a week after my first infusion SO tired. Bone tired. I have yet to make it through a 4 hour shift at work. 

I looked up drug interactions because I'm on a lot of psych meds (Lamictal, Effexor, Buspar, Trazodone) and I didn't find anything, I guess I should trust my oncologist to know. 

I'm trying to eat healthy, drink plenty of water. My appitite is decreased, but it has been decreased for long before the melanoma came along. 

I feel like a pansy. How am I going to take the rest of the treatments when I'm already over it?  I can't take care of 3 kids, work my job, and feel sick all of the time. 

I made the choice along with my doctor to do the treatment because cancer and recurrence run rampant in my family and I'm too damn young and have too much to live for to play games. So I've got to either figure out what to do to deal with the side effects or I need to get less on my plate. 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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_Paul_'s picture
Replies 8
Last reply 8/3/2016 - 11:02pm

Hi All,

I took a break from the board for a few months to enjoy my NEDness. It was great. But now I am back because one of my the presumed dead tumors decided otherwise. My onc at the SCCA is talking to me about this trial: https://clinicaltrials.gov/show/NCT02410512. It combines ANTI-PD-L1 with MOXR0916, a humanized agonist anti-OX40 monoclonal antibody. I am trying to find out about the trial, like dosing schedule, toxicities, and the like. Is there anyone here on the trial that can share your experience?

Thanks - Paul

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JoshF's picture
Replies 11
Last reply 8/3/2016 - 5:02pm

Hi Everyone-

I received a call today from the Sr Clinical Leader at MD Anderson. Just to bring everyone up to speed I'm doing the Phase2 trial of Adoptive Cell Therapy with low dose IL-2 and IPI. They took the CD8+ cells from my blood about a month ago, collected Mart 1+ cells and then let them grow. She said everything looked great and earliest infusion date of September 1st. I'm nervous, excited...hopeful. I know there's not a lot of people out there who haven't done this so it makes me scared....but is there any guarantee in anything we do? I had complete response on ipi and went for a while before recurring in a big way after starting PD-1. Currently, I've had 2 doses of ipi and 3 days of radiation with 7 to go. My 3rd infusion of ipi is scheduled for Aug 12th which would make me start trial a bit later to meet washout. On top of all that I had a 4mm punch biopsy yesterday for a tiny bump on side of scalp. Love the anxiety waiting to see what that is...as derm told me, clinically I wouldn;t be concerned but it's you so... he was going to leave it...I asked him to take it so I can know. Now I have decisions...go with early date or wait for another dose of ipi....any thoughts? I know this seems like a no brainer but with stuff like this I start to lose logical thinking...indecision...one of biggest problems I've had to deal with in my life. Hope everyone is well...

Josh

Let's work for better treatments....for a cure!!!!

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nlac26's picture
Replies 5
Last reply 8/3/2016 - 4:58pm

I started my clinical trial on March 3rd and what a busy day that was! After all the of the pre-testing they put you through, you'd think just taking the drugs would be the easy part. Not really!  My first day of the trial they put in 2 Iv's, one for the nivo infusion and one to pull blood from periodically for 8 hours. It was a long day at the hosptial to say the least. The infusion itself wasn't that bad. It lasted 30 minutes and then I was moved to a research treatment room for the remainder of the day. I take two pills a day of the IDO inhibitor as well. Sometimes I feel they make me a little wonky but as the month has progressed, those feeling have started to fade out. I had my second infusion March 17th. That one hit me a little harder and I was super fatigued and drowzy by the time my husband got me home. I slept the rest of the day, into the night and woke up Friday much better. I did the four rounds of Yervoy last fall and never felt one side effect from the treatment. I expected much the same from this treatment but it seems to be a little stronger. I met with the Dr yesterday and after an exam, we both agreed the tumor in my left armpit is shrinking! Of course, only a scan can prove that but when you've felt this huge lump in your arm for months and all of sudden it's not as noticeable, I have to believe these drugs are working! The little lumps lining my left shoulder blade are also gone! When you're constantly stuck with needles and ran through machines, believing in good news helps the decisions you've made in treatment worth it. We're very exicited and keep praying for the best possible result..NED! Next Thursday will be my 3rd infusion with dual iv's for more PK' blood studies. If I know it's working I can handle it a lot better!  I'll have my 8 week scan in the beginning of May to verify what we're all hoping for... Wish us luck as we keep fighting the fight! Niki

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youngann's picture
Replies 9
Last reply 8/3/2016 - 4:55pm
Replies by: Anonymous, youngann, Janner, LaurieGayle

So my surgery for lymphoscintigraphy and excision is set for June 2nd. My doctor has requested that I join a clinical trial whereby instead of 2cm margins on the incision, I may be chosen to have only 1cm margins taken.

Apparently, this is a world-wide trial and they're trying to see if smaller margins result ONLY in a smaller scar as opposed to missed cancer cells.

I'm a bit nervous about being part of this trial and would like some opinions please.I've been clinically staged at 2b with more than 1 mitosis/mm2

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Chance16's picture
Replies 35
Last reply 8/3/2016 - 4:53pm

Good morning - Recently diagnosed and I am stage 3c WLE and sentinel node biopsy done (node positive) PET/CT scans negative. They are talking about doing a CLND; which I don't want to do. Reasons: #1 complications (if the nodes come back negative I would have to live with the side effects of the surgery) #2 there are probably cells already circulating in my body #3 some literature say it doesn't improve outcomes.  I'm going to Moffitt Cancer Center in Tampa for second opinion. Has anyone else decided not to do it? Any feelings, ideas, suggestions?? I would appreciate any and all feedback. Thank you

Patti

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Ace226's picture
Replies 10
Last reply 8/3/2016 - 1:09am
Replies by: kylez, Ace226, eric w, Mat, Casitas1

Hi Everyone,

 My dad has been doing well with metastatic melanoma for several years now but they told him that it now looks like leptomeningeal metastases which we are all very worried about CSF was negative and he doesn't have side effects of LM which is encouraging. 

 The doctors tried the Ipi/nivo combo (he had Ipi 2 yrs ago and was on opdivo for 8 wks this year)  but with in three weeks he started vomiting and having diarrhea now he has been in the hospital for one week and they are having trouble getting the diarrhea and vomiting under control. They say he has colitis. Has anyone had a side effect of vomiting from yervoy or this combo?  Tomorrow they may try Remicade if things don't get better today.

 I am very worried about him just wanted advice on if anyone had experience the similar side effects. And how they were treated  

 Also if anyone knows about better treatments for LM let me know. 

Thank you!!

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/2/2016 - 7:48pm
Replies by: Anonymous, Polymath

I was diagnosed in March with stage 4 melanoma to the lymph nodes, stomach, bone and lungs.  I have done 3 ipi-nivo treatments and 1 nivo treatment.  I didn't get all four of the ipi-nivo combo because the side effects were too severe. My last treatment was on July 1st and that was the nivo only treatment. Since then I have been on steroids for colitis.  I'm not sure when my next treatment will be but oncologist hopes it will be soon. My last PET scan on July 13th showed almost a complete response.  There are still tumors left but they are so small they don't show up on the scan.  The lump under my left armpit is not gone completely but has shrunken a lot. The oncologist told me its probably dead tissue. What I'm wondering is that once the treatment is complete, do they remove the lymph nodes where the cancer first spread too? Or is this something they only do when someone is stage 3? I'm just not sure how much more the one under my arm is going to shrink.  Just a little confused.

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Anonymous's picture
Replies 21
Last reply 8/2/2016 - 4:36pm

Hello,

My name is Maria and my mother was diagnosed with vulvar melanoma in Nov 2015. It all started with a woman's wellness check after she noticed a lump in her private part and was misdiagnosed. We live in Texas close to MD Anderson but unfortunately was denied because she does not have insurance and does not qualify for assistance program due to her immigrant residency status.  She was granted a gold card and we were able to get care from Harris county hospital. They diagnosed her with stage 3 and told her that surgery was not an option due to the delicate area so they recommended immunotherapy. The treatment was interrupted due to the immune system making her psoriasis flare up even worse (she already had a skin condition to begin with and the immunotherapy made it even worse) so the doctor decided to drop one of the drugs and keep her on ipi. In the meantime, the tumor was growing and was on lots of narcotics to keep the pain down so the doctors started radiation treatment on her to attempt to shrink the tumor down while on the immunotherapy. She received 6 weeks of immunotherapy and the tumor shrunk significantly. A couple of months later they repeated scans and found that the cancer had metastasized to her lungs and back even the the initial tumor and lymph node were almost undetectable. Because she receives care at a county hospital she has been seen by fellows and residents and unfortunately the first fellow we had ended her rotation when she told us the news about the spread. They recommended chemo as the next option but after 2 cycles I could see the chemo sucking the life out of my mom. The first visit with the new fellow was a nightmare. He pretty much told us that there's no cure for this and eventually the cancer will outgrown the chemo. After the two cycles and my mother barely unable to walk the doctors convinced us to just stop treatment and go home to enjoy life. My reaction to them is "so you're just giving up? Just like that?" And they went on to explain that quality of life at this point is the priority. We are not the richest people on earth, my mother has no insurance but she is one of the hardest working people I know. Does this really mean that there is really no hope for this woman because of lack of access to resources? The doctors have given up on her but I just refused to. I have turned in an application for Medicaid (since MD Anderson accepts this as form of insurance) but they said it takes 45 days to see if she gets accepted of denied.....I just graduated from pharmacy school in May and turned 25 this month.  this year has been the most challenging year of my life but I believe that it's not over until God says it's over. I am trying to explore clinal trials options but I don't know if they cost money and I am new to the process. If anyone has any information that may be helpful to my mother and my family I will really appreciate it. 

God Bless,

Maria 

 

- ps I have read some of the stories on the threads and you all inspire me to keep fighting this ugly disease. Thank you for reading. 

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I feel good about having the chance to speak with my father's melanoma specialist face-to-face while visiting in Europe. The conversation went pretty well I thought.

A bit of a background. My father was diagnosed with Stage 3C back in January. He had seizures few weeks ago and they found 13 brain Mets ranging from 2 millimeters to 13 millimeters in size.

He finished two weeks of WBR and is feeling pretty well as of now. He is still on steroids and anti-seizure medication.

After talking to the doctor and telling her my opinion it seems her plan of action is to do a CT with contrast
to see how the tumors reacted to the radiation. She said if he had a good response they might consider doing stereo active radiation if there are spots left, followed by immunotherapy. If the response was not so great she prefers to start him on the BRAF inhibitors.

Seems she would preferred to keep the Inhibitors in our back pocket should we need them later. She feels if he is stable to get going with immunotherapy since it takes a while to kick in. If he progresses she would switch to the inhibitors.

I feel pretty good about this plan. What do you guys think? Any and all opinions, criticisms, agreements are welcome!

Thank you!!

Annie

Ps. I went to the dermatologist today and had my first ever skin check. I seriously thought I was going to have a panic attack right there in the office. They took one mole off my back, the doctor said the worst it would be is atypical. I feel very fortunate.

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sscottmusic's picture
Replies 5
Last reply 8/2/2016 - 7:58am
Replies by: stars, Anonymous, jennunicorn, Andrew1725

My first mm was in 2004. 3 weeks ago they found a 3rd. What does this mean for my future. 

Stan

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Sflynn's picture
Replies 12
Last reply 8/2/2016 - 5:28am

Hello everyone 

My husband was diagnosed in August 2015 stage IV melanoma with lung and brain mets, BRAF positive and can't find orgin. 

He received 1 Opdivo treatment which had to be terminated due to a severe reaction. It took approximately 6-8 weeks to clear it up with high doses of steroids. In this time he also received 10 WBRT and 2 SRS treatments. 

In November he started the Taflinar Mekinist combo. This made him severely lethargic, loss of appetite and dehydrated. He made it 4 weeks on the treatment before ending up admitted to the hospital on Christmas Eve with saddle pulmonary embolisms and DVTs. After multiple scans it showed that there was more brain mets, edema and hemorrhaging on his brain. They discontinued treatment and sent us home 6 days later on hospice care.

Which brings me to today.. He decided to try this treatment again and sign himself out of hospice. The latest pet scan, MRI and catscan showed significant progression and new signs of the metastic disease in both lungs (2 lesions one fairly large) and brain (15 mets-3 large that are hemorrhaging). Also in his right femoral chain. Hemorrhaging of lesions, swelling, Short term memory loss, seizures, loss of mobility are just some of the new symptoms. 

I support his decision to try this treatment again but  I can't help to think is it the right treatment?? I guess I just looking for some positive results or the honest truth from others that are in the same stage. 

 

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Rita and Charles's picture
Replies 8
Last reply 8/1/2016 - 10:24pm

After 9 months on Braf Combo, my husband was suffering still with such nausea and joint pain that he stopped.  He was 2 1/2 months without meds and we feared the worst PET Scan results.  The oncologists were as surprised as we were relieved - no progression, still stable!  The only thing that happened within the 2 months off is that he developed vitilligo..........but the good results are what we really loved.

The Combo worked!  We don't have scans scheduled now until October :)  Vacation from worry worry worry and fear......for now!

Rita

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