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
Replies 7
Last reply 3/13/2014 - 3:49pm

Just an update on my husband who moved from Stage IIIC to Stage 4 last May. He had a tumor wrapped around his spine that was resected. He then had radiation and ipilimumab after that. One of his treatments was delayed due to some bowel issues and the need to go on steroids for a week or so but he got all four in.

His PET scan in October showed some areas that were lit up (shoulder, thighs) - none too significantly - and the oncologist was hopeful that that was his body's immune system attacking those free-ranging cancer cells. He had his last PET Jan. 28. We didn't get the report but the onc called to say they need to do an upper GI/small bowel through to evaluate small bowel wall thickening. Everything else that was lit up before looks all clear. 

I'm being cautiously optimistic. I'm wondering if what's lit up on his PET could be some ulcerative colitis or something like that as opposed to a return of the melanoma. My husband previously had been on the MAVIS vaccine trial and every now and then (almost cyclical in nature) those "bumps" where he got the vaccine trial flare up and itch like crazy. Sometimes they turn purple too - and his vaccine shots ended almost a year ago! (This kind of reaction happened during his ipi treatments too. His tattoos also had a weird reaction to the ipi - search "tattoos" in the MPIP search field to read about that!) He also has some transient bowel issues when that happens. (Wondering if that's his body's immune system ramping up.)

Anyway, I'll post an update tomorrow or Wednesday. But if anybody has any insight (i.e., had small bowel issue on PET that then got the all clear) - feel free to comment away. Meanwhile, if you can spare some prayers and/or good vibes - I'll take those too. I'm really hoping he's an ipi success story that I can soon share with you all.

Take care,

Kimberly

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tschmith's picture
Replies 14
Last reply 2/7/2014 - 2:30pm

I hope I don't sound stupid, but are doctors responsible for finding clinical trials for their patiens or do we find them on our own?  In my case, my doctor, Evan Lipson, has been looking for me but I am looking on my own as well.  Is this the way it normally works?  I'm starting IL2 on Monday, but after that Dr. Lipson feels he might be able to get me into a trial unless IL2 works.  You never know.... :)  Just wondering how this has worked for other people.  

Terrie

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DR Oz 1540 EST 2/3/2014  How to remove wrinkles and facial discoloration AT HOME - 5 top derms. ??????

Likely to sbe on again aat the noon Dr Oz show on 2/4!

I'm me, not a statistic. Praying to not be one for years yet.

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DR Oz 1540 EST 2/3/2014  How to remove wrinkles and facial discoloration AT HOME - 5 top derms. ??????

Likely to sbe on again aat the noon Dr Oz show on 2/4!

I'm me, not a statistic. Praying to not be one for years yet.

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My Dr is a melanoma specialist. I just completed last IPI dose 2 weeks ago today. Before that was zelboraf which shrank nothing and before that with different Dr was pallative radiation to T10 and a few other vertebrae.

They now see everything has increased plus some more spots. This is the first time the radiated T10 spot has increased. The biggest was the left scapula tumor by almost 50% (9.1 to 13) (Probably why I had lots of pain I was telling them about for over 6 weeks but the pain has lessened a lot now). The T10 increased but the Dr didn't know how much since the radiologist didn't include numbers for it. The T10 has now collapsed 50% causing my height loss but not much additional pain since last scan. No one ever reported how much it had collapsed before and no one ever gave me an answer why I lost height way back in August so now I know why I just dunno if this is more collapse or what.

The Dr originally said they don't put much "weight" on this first scan. Now that they have the scan he wants me on tafinlar/mekinist combo immediately. Plus xgeva immediately for bones but that is in the same family as zometa which I took 1 dose last July and was starting to get early stage of the jaw necrosis so I quit and now my jaw is fine again.

So I'm baffled. I asked about clinical trials and he said the only thing he believes I should get into is a PDL1 or PD1 but said there are none available. Despite when I was on ipi they said I could do PD1 if I increased on IPI but apparently not. They are not willing to help find trials.

The only good news is all the mel is still in my bones. Just lots and lots of bones with the T10 and left scapula as the worst.

I'm struggling with this new clinical trial site. It is all way over my head of which trial I should try to get into.

Sorry I'm babbling but I'm at my wits end today after hearing this and very depressed and don't know what to do other than do the med plan the Dr said which I have no faith in it working especially since zelboraf never worked. Only other idea I have is trying to somehow relocate to MDA and see if they have a miracle for me but I guess they deal with the same trials issues too and nothing else. I dunno what to do. Sorry I'm just baffled and rambling.

ArtieV

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Marianne quinn's picture
Replies 1
Last reply 2/4/2014 - 11:16am
Replies by: Anonymous

Thank you mrf for a great conference! Very informative and well run. Good job!

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mark1101's picture
Replies 6
Last reply 2/4/2014 - 9:35pm
Replies by: Bubbles, JoshF, Anonymous, hannahcopeland1

Just approved today for the Phase 4 trial combining IL-2 and Vemurafenib in sequence.  Anyone with experience in this trial who can tell me their experiences?

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Replies by: JulieW, NancyM

Hi all,

I am hoping this is one of the usual worries about nothing but I have not been feeling great recently with a lingering cough (which I get every year - postviral asthma), and over the past week or so have noticed that the inside of my third toe has lost sensation, is numb, and is annoying me.  On my other foot I wouldn't be worried but the WLE scar is on the dorsum of my foot only afew cm away.  There is nothing else obviously wrong with this toe.  I cant remember kicking it or anything like that. It is always possible though.

My question is, has anybody ever had this type of loss of sensation in a local met?  I am probably being extremely anxious (and hope I am!).  I have just had another mole off last week and waiting for those results.  Afew weeks before that one came back atypical.  I haven't been worried, mostly about this toe!

Thanks for your help

Jacqui

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gaby's picture
Replies 13
Last reply 2/11/2014 - 12:01pm

HI,

My husband (38 years) was diagnosed with melanoma (ankle) on june 2012 (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so he had a  groin node dissection and lymph node biopsy in the stomach, all clean.

Since October 2012 he was pegylated interferon therapy (Sylatron / intron), and scan every 6 months. Until the last few tomography nodes were enlarged but the oncologist said it was nothing serious. Sometimes lymph grew smaller and others were a bit bigger.

Tomorrow we have an appointment with the oncologist. The wait is intrined, I'm living inertia

 

These last months had hopes that the melanoma was not as aggressive as it only had a positive lymph node micrometastasis and clean and all the rest. As you might already left the liver?

from diagnosis I'm living a nightmare

God please give my husband a chance

Gaby (from Argentina).

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momof4boys's picture
Replies 9
Last reply 2/6/2014 - 10:00am

I have been coming to this site for about 7 months and have gotten tons of info. In fact because of what I learned on this site I decided to try the IPI/interferon trial. I had initially thought against it because of the 10 mg arm. I actually changed my mind at about 9 pm the night beforeiI was to go have my picc line put in and start interferon. I was fortunate enough to get the IPI 3 mg arm. With that being said, I have also noticed that most people with stage 3 progress to stage 4 eventually. Do those of you that have been a part of this for a long time agree with that? I know things have changed a lot in the last few years but I would just like you to share your knowledge. I was diagnosed by a pa in my local med center. I could tell she didn't look confident so I asked her nurse, I was her first at biopsying. Anyways 3.8 mm nodular melanoma on calf, not clean margins. Ulcerated. Mitotic greater than 1/mm2. Had clnd only the sentinel node was positive. How likely us it that I will advance at some point? Stage 3 b currently

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mwcollins's picture
Replies 9
Last reply 2/6/2014 - 3:13am

After a very late start(3.5 hours late), Kevin had his tumor removed. I unfortunately got a fever this am so I couldn't be there with him. I couldn't risk him getting something from me. The doctor told me that he did well. A pretty big tumor that was sitting on the outside wall of the small bowel. But it is out and now it is time to heal! Thank you for all the warm wishes and prayers. The greatest thing about my husband? He asked how I was feeling when he got to his room. I love this man and even though I know this is a long road, I am confident to travel it with him!

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New rule lets patients get test results directly from labs
New rule lets patients get test results directly from labs

Sandhya Somashekhar FEB 3

The Obama administration said the new rule lets patients bypass their doctors to get results themselves.

Consumer groups said the rule will empower patients and reduce mistakes. A 2009 study in the Archives of Internal Medicine found that providers failed to notify patients of abnormal test results 7 percent of the time. Other estimates have put that rate higher.

“Providers are busy and overloaded, and this was an additional burden on them,” said Alice Leiter, policy counsel at the Health Privacy Project at the Center for Democracy and Technology, which advocates for a more open exchange of information, particularly online.

The American Medical Association and the American Academy of Family Physicians, two large physicians groups, had raised concerns that allowing patients to get their test results without a doctor’s help in understanding them could do more harm than good.

For example, a typical blood test for a person on a chronic medication to test liver and kidney function measures more than two dozen things. A typical lab result will show each result, along with what is considered in the normal range. Only a doctor would be able to tell whether the abnormal result — displayed in bright red — is something to be concerned about.

“If you get those labs, and on that piece of paper are two numbers written in red, you just see that they’re abnormal,” said Reid B. Blackwelder, president of the American Academy of Family Physicians. “That’s where the harm comes, because you don’t know what to do with that information.”

That view is “outdated and paternalistic,” Leiter said. “Individuals are grown-ups and smart and should have the ability to get that information in the way that they want.”

Neither physicians group opposed the rule. Blackwelder acknowledged that providers sometimes fail to call patients about test results — particularly when the test yields a normal result. But he said that is not the best practice, and that a doctor’s office or hospital should call a patient regardless of a test’s outcome.

Officials at the Department of Health and Human Services said the new rule will give patients another way to get information about lab-test results besides relying on their doctors.

“Information like lab results can empower patients to track their health progress, make decisions with their health care professionals, and adhere to important treatment plans,” HHS Secretary Kathleen Sebelius said in a statement.

Seven states, including Maryland, already allow patients to get test results directly from a lab without waiting for a doctor, according to HHS. The District does so as well. Seven states, including Virginia, let patients get that information with their doctors’ permission. Twenty-three states do not regulate the information that labs may release to patients.

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Has anyone with bone mel seen shrinkage with ipi/pd1/pdl ?

I know some have seen bone mel shrinkage with the taf/mek combo but what about the ipi/etc?

The Dr said the mel is carried by the blood and some point it got in my bones thus the tumors eatting away my bones from the inside. But since it spreads to different bones then I assume that must be by blood with mel in it so why aren't these meds like zelboraf and ipi so far getting in the bone and shrinking things. Does anyone understand it? I'm trying to learn how this blood and bone stuff work but it goes over my head. If I understand right it's like the bone marrow inside the bones creates the cells. They float around and some immune system cell gets hit by ipi that turns off ctla4. So now that cell floats around hoping to find a cancer cell but all mine are in my bones thus nearly impossible to find. Did I understand right or am I way off?

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