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 2
Last reply 11/21/2016 - 2:45pm
Replies by: SOLE

My son (T3b N1a M0 ,primary 3.9mm ulcerated) had an appointment with the surgical oncologist, who along with the medical oncologist had recommended clnd and treatment (ipi or trial of Keytruda/ipi). His ct scan was negative -yay- except for "a small spot in his chest which is probably just reactive." Now the surg onc is saying he is on the fence about the clnd because there was only a little bit of cancer in the node, but the med once wants it done. My son had decided to have the surgery and go for the trial in the hopes of receiving Keytruda ,but now there is uncertainty. And while I know the decision is not mine to make, I am not in favor of the clnd.Is the advice of the med onc in the best interest of the patient or the trial? What do you do when the two Drs treating you no longer seem to be on the same page? Any thoughts would be helpful,thanks!

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Bvince's picture
Replies 4
Last reply 11/21/2016 - 11:25am

Yeah... Like I said above... No known primary. I'm scheduled for a PET scan on Monday.  Any idea as to the accuracy of a PET scan, and how helpful it can be in trying to identify the primary?  How quickly can this spread? I'm a vet, and have absolutely no confidence in a timely response by the VA. So I have gone through a non-VA provider and a separate medical insurance. Aside from this diagnosis, and the growth on my neck, I feel great!... I work out 2-3 hours a day.???

 

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jennunicorn's picture
Replies 4
Last reply 11/21/2016 - 6:08pm

I had my second Ipi/Nivo infusion on Wednesday. Yesterday I woke up with stomach cramps. As a woman, it feels like cramps that happen during my menstrual cycle.. but it's nowhere near that time of the month.. so it's weird. Just wondering if anyone else has experienced cramps? It's on both sides, lower abdomen area. No diarrhea or any abnormal bowel movements. Hoping it's nothing and will just go away, but it's really uncomfortable right now. Will definitely call my onc on Monday if it doesn't go away or beforehand if diarrhea starts up.

Hope everyone is enjoying the weekend so far.

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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jms0104's picture
Replies 9
Last reply 11/21/2016 - 12:26pm

I know my prognosis as a recently dx PT1A, .48mm, Clarks level III, no ulceration, no regression is favorable relative to many on here, so thank you in advance for entertaining my questions.  I lost a step-father to a quick stage 4 10 years ago and have a keen understanding of how dreadful this disease can be for some.

I had my WLE a couple days ago but was not able to get a SNB due to my specific staging.  The math indicates that my case has about a 3% chance of spreading to regional lymph nodes, and those odds apparently don't justify the expense of the SNB.  However, I'm sure the unlucky 3% out there wish they had pushed harder and perhaps removed lymph nodes in an effort to stop the spread.  I understand the concept of diminishing return...I.e., the SNB is likely a waste of time and money for the vast majority of thin melanomas.  However, due to the deadly nature of this cancer, why should i accept anything less than 100% effort?  I fail to see how getting the SNB could be a bad thing in my case.  

My plan is to push for the SNB after our Thanksgiving holiday, with perhaps some blood work or other testing.  

Cheers, and best wishes to all on here.

 

Jay

 

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susanspotless's picture
Replies 5
Last reply 11/21/2016 - 4:20am
Replies by: Kim K, Janner, susanspotless

I had melanoma in 2009. The dermatologist my Primary referred me to removed the tumor then sent it out to the pathologist  who diagnosed it as a melanoma. She recommended further excision with wider margins. The dermatologist  took it upon himself to do the wider margins removal in his office on a second office visit then he sent me to a surgeon who did a WLE & SNB. 

I delivered the tumor to the Hospital and their pathology lab found it to be an ulcerated IIa, Clarks level 5 with a high miotic rate, TNM pathological state pT2b N0 (i) MX. 

I am asenior citizen, was a smoker for approximately 45 years who quit 7 years ago . Last week I had a chest CT done and the findigs were:

Lobulated juxtapleural nodular opacity anteriorly in the upper lobe of the left lung
measures 1.6 x 1.8 cm.

There is also a 4 mm nodule in the lateral basilar segment of the left lower lobe.

Impression:

Lobulated nodule in the upper lobe of the left lung is nonspecific, but
suspicious for metastatic disease considering the patient's history.

The Dr.'s office called the following day and said he wants to see me. I made an appointment but haven't seen him yet so I have been researching this all day. I am wondering if this is something they will observe for growth or do they just go straight to further imaging, biopsy, what?

Thanks for any help you can offer :)

susanspotless

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/18/2016 - 8:58pm
Replies by: Totally Blessed, Janner

I know that all new spots need to get checked out and I plan to do that but in the meantime, am just hoping to get some opinions and knowledge based on this terrible disease.

History - I have not had a melanoma but had a BCC removed in my 20's. Due to that and family history of melanoma, I go for skin checks every six months. Have had moles removed and a couple come back as atypical but thankfully, nothing else. 

Given this, I check my skin often.  This morning, I noticed a brown "patch" / spot / area, on my upper back, I estimate it be a good 1-1.5 inches long.  It doesn't look like a mole, of which I have a fair number or like anything else on my skin. I am 99% certain it wasnt there just a couple of days ago!  It has very defined edges from where the browness is separated from my normal skin color. It's rectangular shape and almost looks like a burn mark from something hot, however I wasnt burned with anything there.  

My question is, can melanoma go from entirely non visible, nothing on the skin to something that large and clearly visable, essentially overnight?  Or does a "new" spot usually start small and then grow from there?

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Anonymous's picture
Anonymous
Replies 13
Last reply 11/28/2016 - 4:03pm
Replies by: Anonymous, welcome32, klcouser, dmturner, Tim--MRF, slh4448, Toby0987

My daughter 23 years old was diagnosed with Stage 3 melanoma last month.  Her Tumor thickness ws 0.9mm.  Ulceration absent.  6 mitosis/mm2.  She had it removed along with a sentinel lymph node biopsy which came back saying present as clusters of tumor cells, the largest cluster measuring 0.4 mm in size, no extrcapsular extension seen.  The first melanoma oncologist wanted her to have the CLND along with a year of treatment on interferon.  We were ready to go ahead, but then were able to get in to a Dr. at Sloan Kettering, who says they feel in her case the wait and see approach is the road to take.  Just so scared and don't know what is the right path....

Carol Gonsalves

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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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