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.

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My Mom's doctor said during a recent appointment that they are seeing patients who have been taking immunotherapy drugs begin to get side effects far into the treatment and they are having to take them off the drug(s). - No one had had more than 24 in his practice. - My Mom has had 22 infusions of Keytruda and other than some small red bumps, one large red round spot on her shoulder and vitiligo she has not any other issues.

We have been told to watch out for joint or stomach pain and flu like symptoms.  My Mom will be having a test the next time she goes to the doctor on her heart and it looks like we should just check her blood sugar too.  - We should all be on the look out for these rare side effects as our loved ones continue to take these drugs...

Immune System, Unleashed by Cancer Therapies, Can Attack Organs

Lifesaving Cancer Drugs May in Rare Cases Threaten the Heart

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acyr's picture
Replies 1
Last reply 12/5/2016 - 6:13pm
Replies by: debwray

Hello everyone,

In Canada, we are currently awaiting funding of the combination therapy for Nivo & Ipi (Opdivo and Keytruda). We are seeking patients who have been on thi trial/s involving to participate in a short survey to better understand your experience.  This survey is confidential and no information will be shared on an individual basis.  We hope that you will help us and fellow patients through your participation - our deadline for participation is December 13th.  Thanks again to all from the Melanoma Network of Canada (1-877-560-8035 x 101 for further information).  Wishing all of you a healthy and happy year ahead.

for more information or to take the survey please visit

www.melanomanetwork.ca/mncsurvey

or call 1-877-560-8035 x 101

 

 

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JoshF's picture
Replies 9
Last reply 12/5/2016 - 3:14pm

So LDH went up more and now platelets were elevated. I think high end of range is 450,000 and mine was 488,000. I looked on this forum and everything is low platelet counts...anyone know anything about elevated platelet counts?

Josh

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

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stevecathy's picture
Replies 7
Last reply 12/5/2016 - 2:15pm

My husband has been fighting since July 2015. So everything has went pretty good , until September 26th . He was feeling quite right , arm and leg felt heavy. Went to primary, was sent right to hospital, found brain metastases. Fast forward, he has radiation and started keytruda. Completed 2 keytruda, the third will be today. But he had a fell last Friday, feel to his knees and could not walk . So here we are back at hospital still not walking good so not ready to release. Dr wants to add vemurafenib and cobimetinib with keytruda. He has been on mekinist and taflinar prior before brain mets. Wondering everyone's thoughts on keytruda with vemurafenib and cobimetinib? Anyone done this combo and luck with brain mets? I would appreciate any words on this. I truly am at a loss . Thank you

Cathy Jewell

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MichelleRHG's picture
Replies 7
Last reply 12/5/2016 - 9:35am
Replies by: MichelleRHG, brewgirl68, Fen, Anonymous, jennunicorn

Hi, 

7 1/2 years ago I had a Stage 1b melanoma on my thigh which was removed with a negative sentinal node biopsy. In October I found an enlarged lymph node in my groin, same leg. Needle aspiration confirmed melanoma and I had the 10 nodes removed from there 3 weeks ago. The other 9 are apparently clear (waiting on 2nd pathology lab to double check) Brain mri and PET scans all fine.

Question 1: My local onc. insists this is stage 4 because it is a recurrence. I just returned from MDAnderson and both onc. there say 3b (regional recurrence). Local guy says yes, if it were the initial lesion with this positive node it would be 3b, but since it has metasticized it is automatically 4. Which is it? 

Question 2: If it is 3b, and since I have no cancer at this time, MDA recommended Yervoy (what is FDA approved for this stage) or a clinical trial where I would get either Yervoy or Keytruda assigned to me. I would find out at the start which one it is. I could do the Yervoy in my town but would have to travel 2 hours for the trial. If I draw Yervoy, would it make sense to drop out and just have the same tx in my hometown? What do you all think about these 2 options? I want Keytruda, right? I homeschool my 10 year old with Down syndrome so pretty concerned about side effects getting me down and out but more concerned about recurrence and death!!

Question 3: I am scared to death and the anxiety about this is taking over my life. All 3 oncs say 50/50 chance of recurrence within 5 years with no further treatment. How do you all get past the fear? I keep telling myself "Today you do not have cancer"

Any and all advice and ENCOURAGEMENT AND HOPE is welcome! Thanks in advance.

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alabama girl's picture
Replies 9
Last reply 12/4/2016 - 9:17pm

I was just wondering how those of you that are IIIB stage are doing. I was diagnosed at that stage in Nov, 2011. I  also had breast cancer 3 months ago which is right above the chest wall where my melanoma was. I raised money and walked in the Relay for Life and I guess it made me very down and wondering what survival rates were for us. My next CT scan is in July and you know, not looking forward to it. I am normally pretty upbeat. I guess seeing all those who have died from cancer just makes you more aware of it all and brings it to mind. I usually try to just live one day at a time and enjoy life.

Thanks for any input and encouragement! .

Alabama girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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Hriggenbach's picture
Replies 4
Last reply 12/4/2016 - 9:16pm

I'm set up for wide local excision surgery and lymph node testing very nervous. Anyy info would help I'm very worried the melanoma has spread  this is my pathology report Word for Word 

Ulcerated invasive spitzoid malignant melanoma 

Breslow Depp at least 2.3 MM Clark's level IV
ulceration present
Focal angiolymphatic invasion present
No neurotrophic invasion present 
No microsatellitosis present 
There is a brisk host inflammatory response 
Note: The breslow depth maybe deeper than reported as the lesion is seen extending to the base of the biopsy specimen. The AJCC staging for this lesion is PT3B Pnx, stage IIB. The mart-1 strain efficiency highlights these meanocytes with the PHH3 highlighting Mitotic figures

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Kimmie82's picture
Replies 7
Last reply 12/4/2016 - 9:03pm
Replies by: Kimmie82, dmturner, SOLE, Anonymous, jennunicorn

Hi all...I'm seeking some advice for adjuvant therapy after my latest diagnosis of an in transient metastasis. Luckily my scans were clear everywhere else so I went from a stage IIIa (which was my orginial diagnosis) to now a stage IIIb. It's been 7 years I was disease free and then it decided to rear its ugly head agsin! I recently had wide excision and now contemplating immunotherapy. So my question is to yervoy or not yervoy? 

any thoughts or experiences greatly appreciated! 

<3 Kim 

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jvictoria's picture
Replies 4
Last reply 12/4/2016 - 2:15pm
Replies by: jvictoria, JoshF, _Paul_

Hi everyone,

Currently on IPI and Pembro, just took my second dose this week. This all comes from progression to my lungs and liver. In addition, last week three lymph nodes swelled up, right elbow, shoulder and on my rib. Doctor said it's not unusual to see progression before their is regression... so here we are praying for regression.

So, reaching out to you guys to see if anyone has any exposure to TIL Therapy; hoping this may be an option.

Thanks,

Juan

Juan

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Helping Hands's picture
Replies 12
Last reply 12/4/2016 - 12:32pm

First off I would like to wish everyone one this board the very best with all the struggles they are going through. I have read so many stories and have cried while reading some.  There are no words!   My mom was recently diagnosed with stage IV, first diagnosed when her yearly mammogram came back with a mass and the biopsy indicated Melanoma. What a minute, what!!  She goes yearly for her mammogram and also goes to a dermatologist for yearly skin checks. How could this be?  No primary?  Guess it doesn't really matter at this point. Even though she was doing everything right and taking care of herself this happened. 

This all started in September of this year. In October she went to the Moffitt Center in Tampa to meet with the specialist and start more testing. CT! MRI and another biopsy on a lump on her back. This showed several spots throughout her entire body including one small tumor on her brain. They treated that with stereotactic radiation and we will go back in a couple of weeks. They want to wait 6 weeks To do a follow up MRI to see how it reacted. In the meantime she started with immune therapy, Keytruda which she is getting closer to her home at a Florida Cancer center. The Moffitt center is 2 hours one way and that is too much for her or my dad to do. I've been flying down when she has to go to Moffitt to take her. 

Before they started her on Keytruda this other center did a PET scan which showed more brain tumors. One of many concerns is that if these tumors are spreading so rapidly are we doing all we should be? The follow up at Moffitt isn't until Dec 13th. However they were sent the disc of the PET scan so they would have the results. 

She has had only 1 dose of Keytruda, the 2nd one is tomorrow and had some of the side effects from that one. I know everyone is different but is it safe to say that the side effects will continue with each treatment? 

FOr  all of you that have been through this. What would you suggest is the best kind of support that you've received or what would you recommend that has really helped you through your process?I wanted to start some sort of network with people in her area to help with meals or something  it's so hard living in MA  

Thank you for your feedback. I loom forward to hearing from you. 

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I'm fortunately a stage 1a - spitz melanoma pt  but since I was diagnosed 4 months ago (which as a 33yrs old newly wed I never thought I had to deal with, at this stage/age of my life), I keep my reading updated about melanoma and also have asked my family this year to forego Christmas gifts for me and instead donate to Melanoma research. I used to get my Christmas gifts as donations to "The Smile Train" foundation, but this year I switched. I encourage everyone to try it, for me it makes my Christmas gifts so much more meaningful than let's say a tablet or a Sephora gift card :) 

Article below is a good, albeit scary and sad, read for the latest stage IV immuno-therapies. 

Always sending thoughts and positive energy to everyone on this board and beyond that is fighting melanoma.

 

Immune System, Unleashed by Cancer Therapies, Can Attack Organs - The New York Times

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KPorter's picture
Replies 3
Last reply 12/4/2016 - 11:26am
Replies by: brewgirl68, Anonymous, Janner

I just had surgery to remove a Lymph Node from my groin. At first the surgeon was leaning towards Lymphoma. During the Pathology it was discovered that it wasn't Lymphoma yet Melanoma. I don't have any black spots or moles anywhere on my body. No physical signs of Melanoma. The only thing I had was a swollen Lymph node. Now he's sending me to an Oncologist for a PET scan to see if and where it might have came from. I'm in very great health ( Haven't seen a Dr in 5 plus years. The last time I went was at 40 for a physical. Before then couldn't tell you). The only way they discovered it was through chemical test. Is this common or rare? Don't know what stage or the size of it or the depth of it? Any help, suggestions, or any information would be greatly appreciated, Thanks

 

KPorter


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lmccann2016's picture
Replies 4
Last reply 12/3/2016 - 9:44pm

Hi everyone some of you know me. So i will quickly let others know my situation. Stage 3 melanoma

Initial tumor was 4.7 mm depth 2cm vertical. Mitoic rate 7 margin clear by 0.3

Had wle and found 2.9mm more same tumor not reoccurance.

Had neck discetion as primary back of neck and had 4 out of 40 nodes cancer but still intact.

Treatment recommended

Everyday 5 weeks radition
1 year interferon

Or radition and clinical trial pembro/interferon

However i have 98 days from surgery to get clinical trial and do radition however i have an ooen wiund on neck due to infection and need it to heal by dec 16.

So if not healed should i skip radition go straight to clinical trial and if i dont get pembro stop trial do radition and then do 1 year interferon.

My neck is still healing and hoping infection oa gone however i still have hard areas on neck which i am concerned about. I see oncoligist surgeon on tuesday ..

Any advice on this would be good.

I would rather not do radition as i know sode effects esoecially on neck can be bad.

Thanks

Lisa

Lisa McCann

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/3/2016 - 8:07pm
Replies by: Anonymous, Janner

I had an excision with a 3mm margin. Dermatologist feels I should have another excision with a 1 cm margin. Head and neck surgeons disagree and feel this is adequate even though 1 cm is recommended. If head and neck surgeon does it, he wants to do it right away but I read that it can be done in 3 month time frame.  

 

BBR

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Has anyone found large spots after an recent infusion?  My Mom just had her 22nd Keytruda infusion and it so happens that a large round spot appeared after the infusion on her shoulder. The doctors never found her primary and her past PET scans never lit up here. I am wondering if anyone else ever had anything like this happen.  - A biopsy has been done.

Everything else is great with my Mom and the last sign of anything "new" was brain met (August of 2015) related to a reoccurrence from a brain met that was treated in 2013.

 

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