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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Casitas1's picture
Replies 6
Last reply 11/21/2016 - 12:51pm

Now that I have every ones attention. I was wondering if there are any post pd-1 folks that have had joint pain/inflammation as a side effect of treatment? I started getting this after 4 infusions. I made it to 13 and came off treatment. Been about 8 weeks since last dose and still suffering... My question is how long it might take to subside? Is it gradual or quick? The prednisone takes the edge off so i can at least work.The off days are pretty brutal though.

Best, Paul

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Lentil's Mommy's picture
Replies 3
Last reply 11/18/2016 - 3:22pm

Hello! I was diagnosed with stage 4 metastatic melanoma in July. After a neck dissection with the removal of 96 lymph nodes, and a round of SRS radiation on my brain, I started Pembro. I am 2 treatments down and not sure what to expect going forward. One of my oncologists mentioned arbitrarily deciding a time to stop treatment, maybe after a year. The other suggested continuing treatment forever as long as it is working. I know I am getting ahead of myself, but trying to stay positive, and plan on best case scenario of what to look forward to if treatment works. I am 35 years old and have a 2 year old Daughter. I am grateful for everyday I have with her, but am struggling with the thought of not being able to have another child due to long term treatment. Any others with similar situations and advice? 

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Jubes's picture
Replies 7
Last reply 11/20/2016 - 6:05pm
Replies by: SOLE, Jubes, Bubbles

ADVERTISEMENT

18 NOV 2016 - 1:36PM

Melanoma diagnosis in hours with new test

 

 
Melanoma patients will be able to receive targeted treatment within hours with a Melbourne-developed new blood test that acts as a non-invasive biopsy. 
Source: 
AAP 
18 NOV 2016 - 1:36 PM  UPDATED 5 HOURS AGO

Advanced melanoma patients will be able to get a diagnosis of how far along their cancer is within hours, not weeks, thanks to a new blood test.

The "liquid biopsy" blood test was pioneered in Victoria by the Melbourne Melanoma Project and has saved lives by telling doctors almost instantaneously what melanoma mutations exist in a patient's DNA.

That information is then used to treat them with targeted medication for that strain of melanoma.

 
 

Normally surgical biopsies can take up to three weeks to give doctors that information.

The test is now available to advanced melanoma patients through the Olivia Newton John Cancer Wellness and Research Centre and has had impressive results.

Medical Director of the centre, Professor Johnathan Cebon said a severely ill melanoma patient recently managed to get treated within hours after the centre did the test.

"He was on death's door and literally on the following morning he was able to sit up and have breakfast," Prof Cebon told reporters on Friday.

The test is also used to track how treatment is progressing, giving doctors a visible view of how many mutated genes exist in the blood stream over time, tracking the cancer's retreat.

Researchers are confident the test can be applied for other cancers, with tests already underway to see if it can be used for lung cancer.

Currently it is used on advanced melanoma patients but researchers believe the test will help in diagnosing early stage melanoma too.

Touring the facility on Friday, Health Minister Jill Hennessy called the test a "very important breakthrough".

About 1400 people die from melanoma in Australia every year.

 

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sarah.brannon's picture
Replies 5
Last reply 11/21/2016 - 10:44am
Replies by: Ed Williams, Kim K, tschmith, snow white, Anonymous

I was diagnosed with Stage 3b melanoma August 2015. 1 of 3 lymph nodes biospied had cancer. Rather than have them all removed, I opted to do a year of Interferon. It was definitely hard, and I suffered a lot, but I'm proud of myself for making it all the way through, especially after I found out that a lot of people don't see it through to the end. I finished my treatment Sept 30th of this year. I started feeling somewhat better pretty fast, and although I'm still having some issues (like muscle weakness), I'm taking steps to help myself (oncology rehab). At my last dr appt, they told me the cancer was completely gone. While I'm thrilled to hear that, I'm still so anxious...

I'm EXTREMELY worried that it's going to come back. I've already had a couple moles removed since finishing treatment because I was so paranoid about them. I'm so worried that after enduring everything I did for the past year, that it's going to come back and I'll have to do it all over again. My anxiety level right now is higher than it was when I had cancer! And then I also feel...I don't really know how to describe it...I feel like there's more I should be doing to prevent getting it again, or to prevent having to go through all of this. Like before, I was actively doing something, even though that something sucked. Hopefully the oncology rehab can help me with this feeling, I start next week.

I just have a lot of feelings, and I know some don't make any sense. My husband has really been here for me this past year, but I can tell when I talk about anxiety and depression and stuff, that he just doesn't understand. I eventually had to start on an anti depressant at the beginning of summer, because my mood had just gotten worse and worse. I wish I'd started earlier, but my husband kept telling me depression wasn't "real" and so I was afraid to bring it up at the doctor.

Sorry if this is just rambling. I have a lot of stuff going through my head.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/17/2016 - 8:47pm
Replies by: Janner

I was diagnosed 3b nov 2015. My original melanoma was on my back. Had wle on back but the wound opened and have a softball size scar on back. Noticed a small freckle by bottom of softball scar oct 16. Removed by derm nov 16 and it tested positive for melanoma in sit u. What would be the next steps. Is this a reoccurrance or brand new melanoma.

Thanks

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Gene_S's picture
Replies 0

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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I have had 4 doeses of nivo/ipi combo and just had the 3rd dose of just nivo. I had a little insomnia before the 3rd dose but not bad. I had the 3rd dose on 11/10/16 and I am going on 6th day with no sleep. Dr put me on 30 mg of Temazepam, took one at 7:15 last night and went to bed and was up at 9:00 couldn't sleep. Has anyone else experienced this? Odd is that I don't feel tired. That's not the reason for delaying my next dose. I have had dry mouth for 7 weeks now. Tuesday morning when I took my first bite of food on about the third chew a sharp needle like pain started in my right upper jaw, went through my inner ear and up into my brain. It lasted for about 5 seconds and then slowly ceased. This happened for the next 7 or eight bites of food. This has happened at each meal. Spoke with my oncologist who had me try several test over the phone. He has stopped my treatment and has referred me to an ENT Dr. He thinks my salavi gland on the right has something wrong other than causing dry mouth. Has anyone experience any of this on nivo/ipi combo?

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Carole K's picture
Replies 7
Last reply 11/22/2016 - 6:09am

Hi Everyone

I was very active on MPIP from 1999 - 2006/2007.  MPIP became my life for all those years and I am blessed for everyone who I met herer, and ALL THE INFORMATION and SUPPORT .Words cannot express the gifts I received here .  As all of you know how difficult dealing with Melanoma can be, we can find gifts from this BEAST  

I was dx in 1995 with an ulcerated mole on my back, which was surgically removed.  To hear I was a stage II and I woud be lucky to have five years crippled me  At the time , the only treatment was INF, which my oncologist did not believe in and thank you God he didn't  He chose a wait and see approach,.  I did well until 4 1/2 years later when I was dx with multipled lessions to both lungs.. I knew I was in trouble.  Now what do I do  Both Sloane Kettering n NY and JWCI in Santa Monica wanted to remove one of my lungs. Something told me DON'T DO IT CAROLE.  I prayed and prayed and prayed for God's guidance.  I started taking Essiac Tea,  I did great and weened myself off of it  Bam, about six weeks later..... Brain MET.  Welcome to the WORLD OF BRAIN MET.  Now I am really in trouble.  

I decided to do Gamma Knife...  Short version ,,, the day I went for Gamma Knife, after the halo ( why they call it a halo I have no clue. For those of you who have had Gama Knife you know what I mean--- Nothing like being S _ _ _ _  and not enjoying it  Once the halo wasin place , MRI here I come.  GK no go.... My tumor had burst and bled  My doctor recommended surgery and said y9ou have time to think about it  Hee said y9ou can go home , think about it anc come back.  NO WAY...  Can you do it first thing tomorrow ?  I can do it at noon,,,,, 

From the time I knew I had the tumor I thought about treatment and spoke to my oncologist, who is and always will be the only man in my life, except for my grandsons.  I toyed with doing IL-2.  The more I thoght about it , the more I felt I just wanted to live life, as long as I could  the best way I could  I have spoken to an MD who combines conventional and alternative medicine .  When dx with lung mets I ran across at least five ot six people who shared a story about MIstletoe for lung mets with me.  I  made my appt. with my doctor and  made the decision to o Mistletoe instead of IL-2.  Why?  I am not sure except, I had just been divorced two months earlier after 27 years of marriage and I wanted to live, to love and to laugh the best way I could, for as long as I could.  I made the decision not to do chemo.  It was just a personal choice and ot the choice for eeryone   

I beame very selfish and spent time taking care of Carole  I had been under so much sress and believe in my heart, it is wht brought both of my recurrences to fruition,  I had massages, I meditate twice a day, I prqayed and prayed and prayed some more and had 200 nuns praying for  me three times a day ,every day, I had Reiki done ( am now a Reiki Master).Listened to visualisation tapes and CD's.  I had to destress and heal fro within. I believed I had to heal  as a whole-- body mind and spirit   In Jan I will be NED 16 years.  He's the best guy ever in my life.  I don't have to cook for him, do his laundry or clean the house .  All he wants if for me to be happy..  

BELIEVE IN YOURSELF, and NEVER EVER EVER GIVE UP HOPE.!!!!  God Bless alll of you  Love and Light

Caarole

PS  I so miss this forum and all the awesome friends I made here,  

I loved going to chat.  We would laugh , we would cry  we would tease each othere and laughter was the best medicine    If anyone wants to reach me please reach me at  MelanomaHelp@aol.com   Sending hugs and prayers to all of y9ou.  Hang in there.  

 

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EJJ's picture
Replies 5
Last reply 11/17/2016 - 8:28pm
Replies by: EJJ, Kim K, Hukill, Janner, Anonymous

After 8 years NED and 10 years since first Dx of Melanoma today I received a call that one of my biopsies came back as basal cell carcinoma.
I begin topical treatment tomorrow.
Kind of at a loss of what to think.

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Replies by: cancersnewnormal

Hi all - Haven't been on in a while but just wanted to share this news about my sister Leisa. She's had a heck of a year but, at this point in time, is again kicking ass against the monster.

A recent thoracic CT shows major shrinkage to all tumours. The doc doesn't make any reference to specific tumours mostly because there were only two areas where mel had not invaded (heart and colon) - it literally spread everywhere else.

She's also just had her first MRI of the spine (since beginning treatment) and that one was also rated "good." We are a bit ticked off that they are now referring to two fractured vertebrae (T12 and T5) - we always suspected that there was more than one fracture but docs never admitted it, however, the report states that these were both as "previously noted."

There's a brain scan scheduled for Dec. 1 - her main onc wanted to move it up but the radiation oncologist disagreed. We would've liked it moved up too because my sister is hoping to get her driver's licence back. She had WBR in May for brain mets "too numerous" to count. A followup scan this summer showed major shrinkage with nothing new. If the next shows the same, she'll be able to drive again - we only need two good back-to-back scans. She's never had a seizure and was never put on anti-seizure meds.

Interesting to note - the vetebrae that fractured have pretty much disintegrated and she has lost nearly two inches in height.

Regardless, she is feeling great, has begun an exercise program to build her muscles back (pretty badly atrophied at this point) and is even hoping she may be able to work a couple of days a week again this winter. 

So, we're a long way from NED however, she's still here - responding extremely well - and so far, defying the odds!! It's all "one day at a time," right?!

My heartfelt best wishes go out to all!!!!

Barb

 

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jms0104's picture
Replies 2
Last reply 11/16/2016 - 9:04am
Replies by: jms0104, Janner

Met with melanoma specialist at Northside Hospital here in Atlanta on Mon.  They went over my punch biopsy results for my stage 1a, .49mm, no ulceration, no mitosis, melanoma located on my side trunk area.  Recommendation was for WLE and no further tests or treatment.  I'm considering pushing for a sentinel biopsy or pet scan as an extra precaution.  I'm scared to death that this will come roaring back, although the doctor said the chances were only around 5% and that the chances of a node biopsy showing anything are also very slim.  It seems as though there are many folks on here who started out as 1a only to find stage 3 or 4 disease years later and I want to do everything I can to mitigate my risk.

 

thanks

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SOLE's picture
Replies 16
Last reply 11/18/2016 - 4:04am

in the case of ulcerated primary tumors? And possibly low node burden? Got back from seeing a second oncologist today. Textbook answers. Who can blame them? But the thing about interferon is new to me. Celeste?

He also told me that since my tumour was ulcerated, there are malignent cells in my bloodstream. Is this how it works?

I am afraid to post again here but what the heck, for those of you fed up, you can just pass me by.

For the others, I am truly grateful for your replies.

Sincerely

Sole

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/21/2016 - 9:54am
Replies by: Anonymous, Carole K, Jubes, jennunicorn

Good Morning everyone.

Short history... husband diagnosed stage IV 14 months ago, removed turmor and started Opdivo in November and ending treatments in April this year (12 treatments total).  All scans have been clear(thank god).  Since no additional tumors we really dont know if he is a responder to opdivo.  This past weekend he coughed up what looked like a clot mixed with mucus.  Doesnt see his Onc for a couple weeks still and no scans until December and didnt want to go to hospital.  Of course my first thought was a tumor in the lungs.  Any advice?  Im scared.  He's actually feeling better after 6 months of dealing with residual side effects from the Opdivo.. but now this.  Its keeping me awake thinking about this. 

R

 

Bin

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Jubes's picture
Replies 6
Last reply 11/16/2016 - 9:52am
Replies by: cancersnewnormal, Jubes

Hi all

i am seeing my doctor tomorrow to have sutures taken out and of course I will be guided by him, but just interested to hear if anyone has heard of any problems from someone flying after a keyhole lobectomy?

I was planning to fly to New York for Xmas to see my grandsons (a 10 hour flight and a 14 hour flight we are stopping in Seoul overnight) but it is only 5 weeks after my operation to remove the lower left lobe

the doctor called my family after the op and said it could not have gone better and wants to put it on YouTube to teach other surgeons the procedure. Apart from that I have virtually no pain. I was in icu 2 days after the op, then third day on the ward and got the drain out 4 th day home and since then just panadol. I taught the next day and went to a concert and gave a speech at my friends retirement. 

So I think it went very well. It's just gat if there were the slightest risk of collapsed lung or other complication I would put off my travel plans as I am not insured for a pre existing condition and I know how expensive these things are over there!

anne-Louise 

 

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