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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sofistef's picture
Replies 8
Last reply 5/22/2014 - 12:45pm

Hi,

 

I had a shoulder MRI today to evaluate a presumable shoulder tendinits, and we received the horrible news that there is in fact a head of the humerus fracture due to a tumor!!. I'm in the phase 3 Ippi/ Nivo/ Ippi+Nivo trial. Last scan showed nothing and my doctor confirmed that the CT with contrast that I get every 6 weeks should have caught this. Next week i will have a PET CT , hopefully it will show nothing, as the MRI showed enough already. I find it so hard to believe that a tumor can grow that fast in a matter of weeks!! We a so floored by the news that I cannot think what to do next. I'm Braf negative . They will unblind me tomorrow to see what I can get. I'm so scared !!

 

Thanks

Dana

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Hey Group -

Does anyone have a link or any information as to what the 'First Interim Analysis" of the MSLT-II clinical trial showed?

Was complete lymph node dissection or monitor with ultra-sound showing the most promise?

 

Thanks

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Anonymous's picture
Replies 6
Last reply 5/22/2014 - 2:10pm
Replies by: paul, ecc26, Nadia, tcell, Mat

Hi,

Can anyone tell me when their sided effects started and what they were?  This may be the next step and finding out how soon and what to generally expect would be a great help to me.

Thanks!

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/22/2014 - 4:00pm
Replies by: Anonymous

If you haven't seen it yet, cancer warrior Megan Kowalewski's dance video set to Kelly Clakrson's "Stronger" is a truly uplifting clip that is sure to make you smile. Check it out at https://www.youtube.com/embed/BaQdwTsVtCY?feature=player_embedded%22

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/22/2014 - 4:16pm
Replies by: Anonymous, Janner

Is stage 1b still considered early stage melanoma, or is it only stage 0 and 1a?  The depth of my melanoma was 1.8, and there was no nodal involvement, but I sometimes feel afraid to hope it could be considered early and that I may be "done" so to speak with melanoma.  Thank you so much for your advice and words of wisdom. I am in awe of the incredible warriors I read about on this site. I only pray that I could have the strength you have shown.

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mwcollins's picture
Replies 1
Last reply 5/22/2014 - 8:23pm
Replies by: Bubbles

Just thought I'd fill you all in on the latest roller coaster ride. Yesterday Kevin got the clear PET scan results (yea!). Today we get a call from the scheduling place to schedule his MRI. He responds that it is scheduled for November. They then have him talk to the treatment coordinator. She sends Kevin the results of the PET scan showing something 'not 100%' with his liver. Well, I guess one part of his liver took on more contrast than another part. There is no mass nor was there a determined amount of contrast intake, but they want an MRI just to be safe.

After I got a chance to talk with her, I got to understand that if Kevin had just a routine check up with normal labs done, there would be no reason to do this. Even with the information they have, they deem it 'normal', but given Kevin's melanoma history, they don't want to take any chances. I am so greatful to have such a thorough medical team working with us! Now to get through an MRI!

Oh and btw, the treatment coordinator agrees with me that Kevin should be scanned every 3 months and will make sure the insurance covers it! Love this team! It definitely helps when you trust your team of doctors.

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/23/2014 - 8:07am
Replies by: DUSTILANE, Socks

My Dad has been recently diagnosed with metastatic prostatic adenocarcinoma. I know this is off topic, I am a stage IV 4 melanoma survivor. I'm just worried he Is not in the right place being cared for by specialists in advanced prostate cancer. Any words of advice out there for a very concerned daughter?

Be Brave

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Can cancer be stopped in its tracks? Even cured? The cancer documentary event of the year has now arrived
(NaturalNews) The most important cancer documentary series ever produced -- what I'm calling the "Healing event of the year!" -- has now arrived. It's called The Truth About Cancer... More info at

http://www.naturalnews.com/z045253_cancer_documentary_prevention_natural_cures.html
 

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

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Hey Group- My wife was diagnosed with Melanoma in April. Breslow was 1.2mm, mitonic rate <1.mm2, mole on left shoulder blade. We were told at UAB that they found literally one cell in a sentinel lymph node and recommended that we watch and observe. We went to MD Anderson for a second opinion. They confirmed the one cell to be Melanoma, but said that standard procedure is to remove the remaining axillary nodes, regardless of how small the count is. They are not making us, but are strongly recommending we have the second surgery. They feel this gives her the best chance of it not returning. Tough call, but we are scheduled for surgery out there on June 11. Any advice on the lymph node dissection? Said it is similar to what breast cancer patients have, but not quite as bad due to the area not being exposed to radiation or chemotherapy and they get additional lymph nodes with breast cancer patients up around the collar bone. My wife will not have that, but she will have a drain for about a month. I have never dreaded something so much yet ready for it to be over with at the same time. If she doesn't have the surgery, MD Anderson would scan the lymph nodes every 3 months with an ultra sound. If/when it showed up, then they would take the lymph nodes out, but we would at that point probably be further down the line than we wanted to be. Everyone we have talked to except UAB, is against the"watch and observe" philosophy and say attack this stuff aggressively at the beginning. In other words, get the rest of those lymph nodes out. This is basically the MSLT -II clinical trial without being enrolled in it.

Thoughts and/or advice?

Thanks

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/23/2014 - 3:37pm
Replies by: kylez, tschmith, BrianP

I'm not sure I've ever seen pictures or video of Dr. Rosenberg before. Meet him... kind of, on this TV news clip from a Washington D.C. station. 

http://www.wusa9.com/story/news/health/health-alert/2014/05/22/immunotherapy-nih-cancer-health-alert/9436859/

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/24/2014 - 3:37pm
Replies by: RJoeyB, Anonymous, sofistef, cbs805

After receiving the devastating news about the head of the humerus met. I went today and met with the radiation oncologist and they will decide if they will treat the met with cyber knife of with regular radiation.

This is completely new to me and I don't know what to expect from either of them. Did anyone have similar experiences?

Also they scheduled me for a PET CT next week,  and I'm terrified what that will might show!!! It's just plain horror movie, going from almost NED to having this big tumor in a matter of weeks. I strongly believe that this monster was hiding in my shoulder for a longer time and the CT just failed to detect it.

Prayers

Dana

 

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 5/24/2014 - 8:48pm
Replies by: Ed Williams, ecc26, Anonymous, arthurjedi007, Hstevens0072

Been on vem 17 weeks and told that body mets are stable but new mets in brain and that I need wbr due to their number. I now just feel like a failure clearly I can't respond to my first treatment so things like ipi and Pd1 will be a waste of time. Would also like the wbr to destroy all the small mets I have I'm the brain but bet I will be the one to not respond. Sorry feeling throughly fed up

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arthurjedi007's picture
Replies 12
Last reply 5/26/2014 - 10:27am

Here's the scoop from my experience at Mayo for Merck's EAP of their MK-3475 PD1.

Took about a week for them to do the paper work.

They were told it would take about a week to get the medicine but they got it within a day or two.

Had to have a little over a week washout period for the Taf/Mek combo.

The dosage is 2 mg per kg of your weight. Administered by iv over 30 minutes every 3 weeks.

Merck has allocated 4500 slots. 100 have been allocated to Mayo and they have filled 42 of them.

If this trial becomes available closer to home they can transfer you.

Here's the trial number if you are interested: NCT02083484

I started it last Wednesday.

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