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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Marianne quinn's picture
Replies 4
Last reply 5/29/2014 - 1:42am
Replies by: Anonymous, Marianne quinn, RJoeyB, BrianP

My husband was in the interferon vs. ipi trial for stage 3c. He had melanoma under his thumbnail with 2 nodes.  He was in the  10 mg ipi arm At week 11, he had a CAT scan whioh showed a 2 cm lesion in his liver which was confirmed by biopsy. Very distressing and he was removed from the trial as the onc said the ipi did not work since he was NED before the ipi. On May 6, he had ablation of the lesion which was smaller than the CAT scan. It was a tough surgery in that he had numerous adhesions of his liver to his diaphgram due to being hit by a drunk driver over 40 years ago! They had to remove the adhesions as well as microwave the lesions. He is recovering pretty well now, but there was a lot of pain due to the adhesions. The ablation itself was not that difficult.

He still has side effects from the ipi of a rash and he has to watch what he eats.

From this forum, I am sure that the ipi did not have an adequate chance to work. He will not get the maintenance doses of the trial which may or may not be a blessing in disguise. It is pretty distressing when you get tossed from a clinical trial with no further guidance. He signed 28 pages of disclosures, but it was never disclosed what the protocol should be after being removed  unwillingly from the study. Ipi has the potential of having long term, late appearing, serious side effects and I think it is immoral that the trial makes no provisions for monitoring especially when he took a dose that caused deaths.

Hopefully, he is NED after the surgery. I think it makes him ineligible for PD1 right now. CAT scan is next week. 

My questions are- is he really an ipi failure?  When would he be considered an ipi failure? Has anyone had good luck with ablation of liver lesions? He actually felt really good before the surgery and we were surprised that he had mets. Interestingly, he had many dysplastic nevi / age spots and they have all faded so we know that the ipi worked on something. Younger looking skin with Yervoy- a new marketing campaign for Bristol Myer Squibb.

When I read other posts, I realize that my hubby is luckier than many people with melanoma. This forum has been a life saver for me and I am grateful for all the support and information.

How are you doing Heidi with your trial? Please let us know.

Is anyone at MRF to the oncologist conference this week ? I would love to know the preliminary results of the trial my husband was in.

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Anonymous's picture
Anonymous
Replies 0

The 2014 ASCO meeting starts tomorrow. We can expect a huge amount of data to be shared among oncologists (and us). Like the previous year's meeting, advances in immunotherapy are expected to be a major topic of conversation.

It should be interesting.

 

Good luck to all.

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Teochasse's picture
Replies 1
Last reply 5/29/2014 - 12:22pm
Replies by: SoCalDave

Here I am re-posting a link from Lucy Young's  blog laurasrecovery.com,whose girlfriend and soulmate Laura was diagnosed and sadly passed from cervical mucosal melanoma recently.

Lucy was so kind to make a mention of my story/the second patient/ so I thank her  for having  the strenght,courage and grace to make a Tribute to Cervical Melanoma Survivors in this  hard and sad time for her.I think we both are trying to spread awareness and give hope to women out there that are affected by this dreadful deadly  disease.

Dear Lucy,Laura is up in Heaven smiling upon you,God Bless Her Soul.RIP Laura

http://laurasrecovery.com

 

 

 

 

Teodora Chasse

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sweetaugust's picture
Replies 17
Last reply 5/29/2014 - 12:28pm
Replies by: sweetaugust, Anonymous, BrianP, Bubbles, Gene_S, palmspringswalt

Hi there!

After reading several of your stories and looking at all the information out there, I realize I am one of the lucky ones to have qualified for the pd1 MK-3475 trial.  It appears too, from what I am reading, that even the dosage I am getting (the highest dosage) seems to be the dosage with the better results.

But part of the trial I am in, is that they are trying to figure out how much of the drug is needed for the best results.  Which brings me to my biggest question:  How much is too much? 

I originally was signed up for two years.  Then a year into treatment, they changed it and had me sign new forms saying "no end date."  Saying that I could be on it for the rest of my life. 

I am having a great response so far and am so thankful for that.  But I am struggling with how long I should actually stay on the drug.  And I am struggling with the fact that if I bow-out and come off of it, they will not offer it to me again.

Ideally, I'd like to do my original two-years and then come off of it and see how things go.

Has anyone out there been on it for a long time, come off it, and is still doing great?

Laurie

 

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ray39's picture
Replies 3
Last reply 5/29/2014 - 1:19pm
Replies by: ray39, Anonymous, Janner

So I went yesterday to get my stitches out from my wide excision....everything clear, no problems.  Time to relax right?  Nope, not me....I asked the doctor to look an another mole on my back...."yeah, at some point in the next three months we'll take that off too just to get some history on you".....I said how about today?  So, he went and did a deep shave biopsy on me and said "I don't see any pigmentation under it '....but, I got home and looked at it and see where there is thin black marks in it (kind of a line in the middle of the wound)....now I'm wondering if he was just trying to calm me down because I was so worried last time.  Is the line from the shave?  Is it a left over growth?  Boy, these atypical moles are really beginning to take over my life.  So, another week of waiting for results....

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democat's picture
Replies 4
Last reply 5/29/2014 - 1:44pm

I was initially diagnosed in December 2012, had sentinel node biopsy in January 2013, and lymph node dissection in February 2013.  My melanoma oncologist said I was officially Stage 3a, but more like a Stage 3b, because of the depth and thinkness of my primary and the high rate of mitosis. So he says I'm 3a/3b.

I've had 3 CT scans in the last year and a brain MRI - all clear.  Friday is my 4th CT scan, and I'm nervous to the point of distraction. I feel like I can't make any plans for vacations, or much of anything, until I get those results.

There is so much conflicting information about survival rates and disease free survival rates on the Internet - much of it out of date.  I'm sure I read something at some point about the 2-year NED anniversary as being a point where odds against recurrence improve, but can't find anything to that effect right now.

Leading up to my scans, I always do some research on the latest treatments for metastatic melanoma, to convince myself that stage 4 isn't necessarily a death sentence.  I also draw comfort from reading the posts of many on this site who have withstood various treatments and are still around.

I know I'm rambling, but I just wanted to reach out, in case anyone has any words of wisdom on how to survive the run up to the scan, and the even worse wait for results.

 

Thanks!

 

Roxanne

 

 

 

 

Roxanne

Stage IIIa/IIIb

since 1/2013

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Ginger8888's picture
Replies 11
Last reply 5/29/2014 - 4:45pm

Hello i'm Ginger.. Was stage 3 C i guess until today after my Dr. appt...I had a biospy done last week on a lymph node on my neck..I had a dissection back in feb..Well the node tested positive and i'm worried sick..I have adopted my 14 old grandson and a single grandma..My oncologist here( in my area) has been in constant with my Melanoma Specialist since he's been seeing me..My specialist is meeting with others to figure out what to do next..I finishedthe 30 interferon about a month ago with no problems and am worried what the next step will do to me.. 

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sofistef's picture
Replies 20
Last reply 5/29/2014 - 5:16pm

Hi,

 

Yesterday received the news that I hoped I would never had to hear. I had the PET CT to further evaluate the extent of the melanoma spread. Aside from the shoulder met, I have another 3 cm liver lesion and some other small ones.All of these showed up in a matter of weeks !! The index tumor is smaller and has faint metabolic uptake for all it matters. They unblinded me and I took both Ippi and Nivo so I received the most efficient treatment, too bad it only worked for a such short period of time. The brain MRI came back clear thank God! My blood work is still normal dispite all of these including LDH. Right now I'm trying to cope with all these terible news and look for another treatment. I need to reevaluate the adrenal function hopefully I'm no longer adrenal insufficient. Did someone had such a bad experience with the combo? It is so painful not to have a back up plan! I'm Braf negative unfortunatelly! I really appreciate any advice!

Dana

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/29/2014 - 5:27pm
Replies by: Ed Williams, Anonymous, hbecker, Socks

Hi! I was recently diagnosed stage 1b nodular melanoma.  I guess from all my research nodular is the worst kind- which makes me wonder if that means mine will recur.  A also feel like it doesn't matter the stage- that melanoma will catch up to you no matter what. It seems that all I read is stage1 progressing to stage 3/4 any time.... But some as late as 20 years later.  Are you never "safe."  This is all very overwhelming.  Thanks in advance for your advice.

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/29/2014 - 11:57pm
Replies by: Swanee, Janner

Eight years ago my husband had a wide local excision which lead to lymphatic mapping and sentinel lymph node biopsy. One lymph node was removed from each armpit and found to be Melanoma free after biopsy. Since then he has had several more excisions that have only led to sometimes taking a little more around the area just to make sure. Most recently this happened about four weeks ago, and we were given the all clear.

Yesterday he felt some soarness in his underarm and later looked to find a large colorless lump under the skin. This morning he said it felt larger. I immediately got him in with his Dermatologist today who examined where they had recently removed the stitches. The Dermatologist said everything looked fine, gave him some antibiotics, mentioned the rare possibility of cat scratch fever, and scheduled him a follow up appointment in a week.

I am shocked that the possibility of it being Melanoma wasn't so much as even brought up? I wish I had gone so that I could understand why this is not a concern, which brings me here...

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laura b's picture
Replies 5
Last reply 5/30/2014 - 12:11am

My dad was diagnosed as stage IV (BRAF -) in March with several mets in his lungs. Radiation and surgery were not an option. I tried to get him in a couple of PD1 trials but was unsuccessful. He began Yervoy/ipi treatments on 4/17 and had his third of four infusions today. Before the infusion today, he had his first CT to check for progression. We had been warned that there would most likely be growth at this stage since it takes a while for Yervoy to activate. However, we received some unexpected good news! The scans showed no new growth and no new masses. It even appeared that some of the tumors were thinner, and the radiologist thought he could see the beginning signs of necrosis. We’re still cautiously optimistic, but I wanted to share his experience for all those out there who may just be starting their journey, like my dad. 

This board has helped me so much with information, options, and encouragement that I have in turn shared with my family. It all felt so dark before I found this community. Thank you to everyone. Wishing you all health, strength and positivity. God bless!

Laura 

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melanomafighter's picture
Replies 7
Last reply 5/30/2014 - 7:43am

Hello...wanted to send hope and positive outlook to all of you...50 months NED....I feel very blessed....

Remember what's important and make everyday count

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Mamasgotsomescara's picture
Replies 7
Last reply 5/30/2014 - 9:44am

Hi all. I was just diagnosed with melanoma and have surgery next week. A staging wide excision. The tumor is right on my lower shin on my leg. I am looking for anyone who has had this. What can I expect recovery wise? Dr said it's a tough spot because there is very little skin to close the wound. I have a 12 week old baby and a 3 year to care for and wondering how many days I will need child care. They are going about 5mm deep. Any info greatly appreciated!!!!! 

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sofistef's picture
Replies 6
Last reply 5/30/2014 - 6:23pm

Yesterday I got the result of the Braf re-test and I'm positive this time. I hope I can slow down this monster with the targeted therapy, hopefully my adrenals will behave in the meantime and I can do TIL! My shoulder is starting to really bother me.

Prayers ,

Dana

 

 

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