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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Sharon93065's picture
Replies 6
Last reply 1/11/2018 - 1:08pm

I just started my Opdivo  1mg  maintanence yesterday. Dr said when i did my 3 treatments of combo it was also 1mg of Opdivo with the Yervoy. Had to skip 4th treatment. Just got off prednisone so i could start maintainence.  He said 1mg to start with.  Those of you were were on Opdivo monotherapy for several years, how strong was your dose?  I just read a lot of your blogs that you had dry mouth and looks like the rashes might come back. Yuk. At least i am equipped with the knowledge you all gave me when my journey first started last summer.  With the rashes and such in case they come back. i had two new 'nodes' glow on my 3rd petscan.  He said not 100% that is is the c word but with  my history he will treat me like it is.  I just 'googled' a post.

Praying that maybe my maintainence will be reduced  to 30min in the future every 4 weeks???  And 480mg. 

Supplemental Biologics License Applications to update nivolumab dosing
Date: 10 Aug 2017
Topic: Cancer Immunology and Immunotherapy
On 24 July 2017, Bristol-Myers Squibb Company announced that the US Food and Drug Administration (FDA) accepted its supplemental Biologics License Applications (sBLAs) to update nivolumab(Opdivo) dosing to include 480 mg infused over 30 minutes every four weeks (Q4w) for all currently approved monotherapy indications.
Filing for four week dosing infused over 30 minutes across approved nivolumab monotherapy indications supports innovation and making cancer treatment more convenient for healthcare providers, caregivers and patients.
The applications are under review with an action date of 5 March, 2018.

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/11/2018 - 2:04am
Replies by: Tracyyy, lep

Hi Guys/Gals,

 

Is everyone still posting with 2017 Stage III subgroups?

They just changed 1/1/2018.

There are now four Stage III subgroups.

Makes me so confused!

 

Thank you for your time.

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Dasupah14's picture
Replies 2
Last reply 1/10/2018 - 9:17pm
Replies by: Janner, lep

Hello guys
3 years ago I had a mole lightening. It lightened so much that it turned completely white. I didn't biopsy and didn't even care. I've read in the internet and read that it would probably be a benign regression. It wasn't suspicious before it lightened. First one half started to regress and then the other one. Should I be concerned about it or should I just stop thinking about it. It doesn't look suspicious now.

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Sgarceneaux's picture
Replies 5
Last reply 1/10/2018 - 7:33pm
Replies by: Sgarceneaux, Fish, Becky, Anonymous, Janner

My 11 year old daughter was just diagnosed with an atypical Spitz tumor that started in the scalp and now has moved to the lymph nodes in the neck. The initial pathology was done at UCSF and further test are being done at Sloan Kettering. We are currently seeing our local Pediatric Oncologist/Hematologist who has advised us to hold tight  for the test results to come back and do a PET scan in 2 weeks. I am looking to get a second opinion as not to waste time and he said he would facilitate this for us but I want to make sure I go to the best place for this second opinion and don't waste anymore time. Does anyone have any experience with this type of tumor and where the best place would be to go? Any info would be greatly appreciated. 

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CPM0720's picture
Replies 7
Last reply 1/10/2018 - 5:54pm

My husband was diagnosed with Stage IV Melanoma in September of this year. It started on the skin but had spread to the lymph nodes, liver, lungs and bone. So we know it is bad and wide spread. He received 4 doses every 3 weeks of Opdivo and Yervoy. The place on his skin got SO much better. It was large and open and had been oozing. It is now small and not open... however his CT scan shows growth of tumors inside. The doctor was shocked - had not seen that before.

Anyways, they are now moving us to targeted therapy treatment. He will be taking Trametinib (Mekinist) and Dabrafenib (Tafinlar). They told us these meds only usually work 6-12 months. This doesn’t sound great to us as he is 47 and we have 3 young children.

Have any of you done this and it worked longer? Or when the melanoma did come back, what was your next option? I am also wondering if anyone has ever done this to get their tumors in check and then move back to immunotherapy.

also would doing any of this, hinder him from clinical trials? Any knowledge would help.

we are also working on getting a second opinion. 

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Anonymous's picture
Replies 3
Last reply 1/10/2018 - 5:37pm
Replies by: Joannxbuc, Becky, Cindyco

My wife, 42 years old, was diagnosed with mucosal melanoma in the nasal passage 4/2017. We caught it early, she had two surgeries(2nd was to clear margins). Then, to be agressive, as preventive, she had 30 rounds/6weeks IMRT(radiation) then 4(21 day) rounds of chemo(cisplatin & temador). Surgery and radiation was at MD Anderson, chemo was prescribed by MDA, but administered in SC.

Most statics show a 5 year survival at 20-30%,  How long have you been fighting with MM?

RTP

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/10/2018 - 9:49am
Replies by: Anonymous, Newmanbell, doragsda, ed williams

I am a 36 year old wife and mother of 4 beautiful children.  I was diagnosed with stage 3b Melanoma in April 2017.  After surgical resection, I began receiving Yervoy.  After 2 doses of Yervoy, I developed hypohysitis (inflammation of the pituitary gland).  After 2 hospital stays and lots of steroids, I am finally feeling like myself again and doing well.  I do not have any longterm or lasting issues from this complication.  Before my second dose of Yervoy, my oncologist told me that with the finding from a new study, he felt like I needed to switch to Opdivo.  I opted to continue with my second Yervoy dose while we got everything straight for me to begin Opdivo.  Then, I developed the hypophysitis.  I really want to go ahead and do the Opdivo.  I want to do everything possible to prevent a recurrence.  At first, my oncologist said no, but now he agrees that I should do the Opdivo.  IHis nurse, however, was very discouraging about me doing this.  I am looking from your opinions.  If you were in my shoes, would you do the Opdivo?  

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Anonymous's picture
Anonymous
Replies 0

I went to NIH yesterday for the TIL trial screening. Before I started the process two nurses outlined how things were going to go during the day. They told me that after the tests and an exam by my clinical fellow I would meet again with her and with Dr. Sherry, the attending physician. "We won't be able to give you a definite answer today, but you'll have a good idea about whether or not you'll get it."

Dr. Sherry called me an "excellent candidate." But he had two concerns. First, I have a separate thyroid issue, and one lobe of my thyroid has pushed my trachea slightly to one side. He was concerned about whether they could easily insert a breathing tube for surgery. Second, I take methimazole for hyperthyroidism. He told me he needed to consult with their endocrine team to see what they thought. He was particularly interested in whether methimazole has any effect on lymphocytes.

So if my thyroid isn't seen as a problem, it sounds like I'll get in. They said they would let me know by early next week.

-Bill

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doxiemom's picture
Replies 15
Last reply 1/9/2018 - 3:33pm

Hello dear MRF community, I'm new to posting here. I was diagnosed with Stage 4 in May. First presented mets in breasts. After 4 rounds of Keytruda, it spread to spinal fluid. I then went on BRAF combo, which I couldn't tolerate (ongoing fevers). Next was radiation. And this coming week I'll start the other BRAF combo. Just wondering if anyone else is dealing with the spinal fluid ("leptomeningeal") and it's complications. Thanks. 

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casagrayson's picture
Replies 7
Last reply 1/9/2018 - 10:41am

I'm thinking a lot today about the people I miss.  My brother passed away ten years ago on New Year's Eve (not from melanoma) and I lost both my MIL and my father this year.  Then I got to thinking about all of the special people on this board who we lost.  To the families of Josh, Adriana, Paul, Jamie, Shane, Juan, Charles, Julie's husband, Cberry's father, Cindy's daughter Kristine, Greg, JohnM, Annie's dad, Judy's Vince and all the other brave sould who lost their fight this year, know that your loved ones made an impact here.

Strength and Courage,

Susan

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/8/2018 - 11:02pm
Replies by: jennunicorn, Anonymous

Hello follow warriors! Question for anyone who may have experienced the same here. Stage 3b, original tumor found on ear in May 2016. SNLB revealed 1/9 nodes to have mel in it, very small amount. 

I had a subsequent modified neck dissection, removal of 25 additional nodes with no spread. Just completed 1 year of pembro on clinical trial. 

For the first time since 2015 I've experienced a bad seasonal cold. Fatigue, cough, sore throat, runny nose. Fortunately it has passed and I am feeling better, but I did notice that a few nodes along one side of my neck incision really became pronounced. No real soreness, maybe a little bit in the beginning but they were very soft a moveable. Over the past week they've gone down in size which is reassuring, has anyone else experienced this?

I know neck nodes tend to swell pretty easily. Could they have gotten bigger than the other side because there are functionally less where I had the surgery?

Would love any thoughts..or rationalization..

 

Thank you!

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casagrayson's picture
Replies 2
Last reply 1/8/2018 - 9:18pm
Replies by: casagrayson, Bobman

Has anyone heard from Bobman?  Last he posted he was trying to get back to the mainland for treatment.

Strength and Courage,

Susan

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Replies by: Prd10, Treadlightly, Anonymous

In september of 2015 I had a melanoma removed from my right arm. I first noticed it in april. It looked like a blood mole. My girlfriend wanted me to have it checked out but me being me I just looked it up on Google and it looked EXACTLY like a blood mole. So I decided I wasn't going to have it checked out. in the middle of August I started to have very bad shoulder pain.(a sign from my guardian angel ?? )
I wrote it off as a strain for work. This pain went on for weeks untill I decided to have it checked out. While at that appointment I asked my doctor to look at the mole. He thought it was nothing serious but decided to remove and semd it out for testing. Few days later he calls me on a Sunday night to break the news to me.
I make an appointment for surgery and have the rest of the mass removed as well as a lymph node removed. The lymph node came back good and all further tests came back as no more cancer in my body. I was out of work for 4 weeks do to the 40 stitches on my bicep. Once that was healed the shoulder and arm pain was no longer there.it was gone within a week after the surgery.
FAST FORWARD to today..... the past 4 weeks I have had arm and shoulder pain again..... and once again I chalked it up to a strain at work ....
Then I read this article:

https://www.google.com/amp/s/www.today.com/amp/health/newlywed-dies-afte...

Has anyone else experienced this before and after surgery ??

I have called the oncologist I dealt with and felt like her nurse just brushed me off about it. Telling me I should see the skin doctor or just go to my regular doctor.
I feel like they should be taking this more serious.
It feels like the same pain I had leading up to my surgery. Could my new pain be ANOTHER sign??

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dbrown's picture
Replies 3
Last reply 1/8/2018 - 7:37pm

I have recently been diagnosed with a level 4 malignant melanoma with nevoid and desmoplastic components. At least 2.1mm in thickness. 6 mitosis per sq mm. All I have is the pathology report and booked to see plastics surgeon on Wednesday. How do you know the stage? Do you have to wait until it is removed? Does this diagnosis sound bad? Thanks

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/8/2018 - 5:06pm
Replies by: fleurdelis82, Janner

Hello all,

recently went to my dermatologist who noticed a spot that she said she wanted to keep an eye on and wait 6 months to look at it again. I told her no and that I wanted it removed right away. My biopsy is on Tuesday and I am freaking out. If she thought it was Melanoma would she really want to wait 6 months? I keep emailing her and she stated that the biopsy will show if it is benign or atypical. I have no family history. Would she tell me if she thought it could be melanoma? Sorry just freaking out over here. I have a four year old and am so so terrified. Please help!

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