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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Shelby - MRF's picture
Replies 10
Last reply 11/5/2011 - 9:00pm

Hi everyone,

I apologize for the ridiculous amount of SPAM that was/is on the bulletin board.  We are looking into ways to tighten that security to reduce (or prevent) this stuff from appearing.  In the next week or two we'll be running through some different options that will hopefully be of minimal distraction to you.  We have a few options but, as you could probably guess, the most effective ones will likely be the most annoying for the regular users. 

I just wanted to thank you for continuing to let me know when you see these types of posts.  In the future, if it's easier, I just need the username of the SPAMMER and then I can block that user and start deleting posts.  Deleting the posts takes some time because we have to do it one at a time.  We're also looking into fixing that.  Thanks for your patience everyone and as always, be sure to let me know if you need anything.

Shelby - MRF

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LynnLuc's picture
Replies 2
Last reply 11/3/2011 - 3:45am
Replies by: JerryfromFauq, deardad

My thyroid is toast...and  due to the MDX 1106 ( anti PD 1)...oh well so I take a pill every day...not a bad exchange for NED. Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Emily C's picture
Replies 4
Last reply 11/9/2011 - 1:05am
Replies by: Emily C, jmmm, SarahS

Hello everyone!  My name is Emily and I'm completing a project in school...and I need your help.  I am creating a website to advocate melanoma awareness, and I would like to add some other personal stories besides mine.  If you would like to be featured on my website, I would love to hear your story and your thoughts on the current crisis of rising melanoma rates in young adults and children.  Thanks!

I go to nature to be soothed and healed, and to have my senses put in order.

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Kosta's picture
Replies 4
Last reply 11/4/2011 - 5:01pm

Hoping for the least side effects and better results than Zelboraf.

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Lori C's picture
Replies 6
Last reply 1/19/2012 - 3:47am
Replies by: carenlee, JerryfromFauq, LynnLuc, MariaH, Lori C, Anonymous

My older brother was just diagnosed with invasive adenocarcinoma of the rectum.    We don't know much else yet, but I was looking for an online resource like MPIP for him - any ideas?

Thank you,

Lori

Caregiver to Will

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Lisa13's picture
Replies 11
Last reply 11/4/2011 - 7:08am

I had my appointment today with my Dr and went over my CT scans.  As mentioned before, I had the majority of my nodules shrink - by 50%!!  He said this is incredibly successful and in his trial, I'm the first patient with the fastest decrease.  I had 2 nodules that grew a little bit, so instead of waiting 12 weeks, he's going to scan me in another 4 weeks to see how they look.

Now for the brain lesion they found. It's 2cm, but I have absolutely no symptoms and my neurological tests were perfect.  I have a bran MRI tomorrow so they can look more closey at it as they don't really know what it is. My dr. said it' doesn't look like a typical melanoma - it has no blood vessels and it's very clean looking. He said he suspects melanoma cause what else could it be, but they're double checking everything since it's very unique.  It's deep in the left side of my brain and I'm a great candidate for gamma knife. I know this really sucks, but he's actually never seen anything like this before and has a group of people waiting for the MRI to review what's next.  He said I could be lucky to have this 1 lesion removed next week and not have it come back anytime soon and hopefully the ipi will take care of any microscopic cells.  Another good thing is that the cancer has not spread anywhere else, so even though it's probably in my brain, it's nowhere else and I'm a responder to ipi! 

Getting the brain MRI is a little nervewracking as it looks more closely at things, but he's pretty confident there is just 1.  He said he believes it's not very agressive because it has no bleeding, vessel and I have no symptoms.  My hope is that this is a miracle and is benign or it's just 1 that comes out next week!

Lisa

Many impossible things have been accomplished for those who refuse to quit

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gabsound's picture
Replies 5
Last reply 11/3/2011 - 9:04pm
Replies by: gabsound, Charlie S, rbruce

I've finished my 4th round of biochemo and have probably dropped 10-15 lbs which seems to me to be almost all muscle. My oncologist did tell me that IL2 does metabolize muscle. Just adding this to the list of effects from IL 2.

Unfortunately I still have a lump in my leg that did not go away with the treatments. I've been following this, since the last surgery July 1st with ultrasound as that is my job and I have access to a machine and my own leg. Originally thought was a hematoma and was getting smaller. Two new lumps are now seen right next to that area.

Pet/ct and brain MRI next week to see where we are at. Hopefully still at just in transit disease in the leg. The oncologist is talking maybe another surgery, at least for biopsy, and then he mentioned maybe IPI combined with something else (clinical trial maybe). He didn't really want to speculate too much before all the facts are in hand.

It's discouraging to say the least. Failed interferon and now biochemo. Dx in Jan / Feb this year. Ulcerated lesion, high mitotic rate of 10, micro met in one node w all other nodes clean. Not sure if my stage has changed to 3C.

BTW my sister w breast CA finished her chemo with nothing palpable left. She sees surgeon today to see what the plan is. She is doing well.

Keep up the good fight,

Julie in Las Vegas

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Majalist's picture
Replies 2
Last reply 11/3/2011 - 6:01am
Replies by: Majalist, shelbug66

Hello there,

I am Marleen from Belgium, and I was diagnosed melanoma in august 2010. I inderstand, after reading a lot of messages this afternoon, that I can call myself very lucky since I am only stage Ib (at this moment). Still I am a little anxious, because I see my dermatologist within 1 hour since she has removed a new suspected spot. I guess it is always in the back of your mind things can go bad very fast. I want to be prepared incase things go wrong. I am a pharmacist and I try to follow the possible medical interventions also from a interest in medication. Yet I hade experienced that there are a lot of specialists in this group! I really admire all the fighting, believe and hope I read here. You are all in my hart and prair. Best regards to you all!

Be grateful for the gift of life

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sss's picture
Replies 1
Last reply 11/2/2011 - 2:07pm
Replies by: Phil S

To say I am very disappointed would be an understand.  While the scans showed shrinkage of many tumors throughout abdomen, there were a few that had grown slightly. My liver enzymes are creeping back up. And there are now mets in brain, which are fairly widespread.  So the recommendation is WBR and Switch from Venurafenib to Ipi.  can't say I am excited about either prospect. I am to meet with radiation oncologist on Fri for initial consultation.  Med onc office thinks I can keep working during WBR. I would appreciate input from those who have been there.

We told our 2 daughters last night. The news was traumatic for them (ages 14 & 12) to say the least. A rough night for all of us

sss

Life goes on as usual. There is no other way.

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sss's picture
Replies 2
Last reply 11/4/2011 - 8:46am
Replies by: Anonymous, dearfoam

To say I am very disappointed would be an understand.  While the scans showed shrinkage of many tumors throughout abdomen, there were a few that had grown slightly. My liver enzymes are creeping back up. And there are now mets in brain, which are fairly widespread.  So the recommendation is WBR and Switch from Venurafenib to Ipi.  can't say I am excited about either prospect. I am to meet with radiation oncologist on Fri for initial consultation.  Med onc office thinks I can keep working during WBR. I would appreciate input from those who have been there.

We told our 2 daughters last night. The news was traumatic for them (ages 14 & 12) to say the least. A rough night for all of us

sss

Life goes on as usual. There is no other way.

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dearfoam's picture
Replies 6
Last reply 11/2/2011 - 5:35pm
Replies by: dearfoam, Janner, Anonymous, Jamietk, justlittleoleme

Background: Dad's melanoma was discovered as a batch of several tumors in lungs and brain. After biopsy, it was discovered he'd had a melanoma removed from neck years before that he forgot about. Treatments got underway immediately and no dermatologists were involved looking him over.

Fastforward to last month: After saved biopsy sample was deemed insufficient for BRAF testing, other options for new biopsies of mets were also ruled out because of his physical condition/ risks to brain. I had noticed an ulcerated mole on his torso which we thought coudl be melanoma, and went to a dermatologist, who removed three moles. All were positive melanomas and went off for BRAF test (still waiting). At the time of appointment, the ulcerated mole didn't look like a Mel, but was.

Now one on his face has swollen and has started bleeding. I noticed another on arm has a scab. Dad claims to not pick at these but I have caught him doing just that. The Onc's nurse said to contact the dermatologist.

What I am wondering is, if htere are more melanomas popping up, do we need to have them all removed? It would seem like we should remove as much as possible to reduce other growth and spread. I just don't know what is the routine with this sort of thing.

We see the Mel specialist on Monday after the CT scan. Should find out about the BRAF tests, too. I am also waiting to hear back from that dermatologists office as to what she thinks. In the meantime would be interesred in your feedback.

Thanks,

DF

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nickmac56's picture
Replies 8
Last reply 11/3/2011 - 3:18am

They've been pumping my wife full of blood and platelets and her counts are on the way up so she should be able to have surgery today at 2pm to put in a shunt to relieve the pressure in her brain. This is a good example of how one treatment (chemo) can hinder another (surgery). The neurosurgeon is very concerned about bleeding and since the chemo (Abraxane) she's been on for the last two weeks has driven her bloodcounts down her ability to clot is compromised. The steroids she is on are a problem too, I did not know that steroids make wound healing difficult.

That's another reason they don't want to start any treatment for at least ten days after the surgery. They want the head incision site to heal, brain infection is not good. Our doc has ruled out the direct chemo to the brain. The neurosurgeon concurs. So that's four professionals saying no to it. I concur. I researched it a lot yesterday and there is no evidence it has any effect against melanoma, and it has large toxicity issues. Her best bet for buying some time is whole brain radiation, but we will hold off making that decision until ten days after surgery. If she elects to do it, it should shrink the cancer in her brain, which is significant according to the scans. Not just the two solid tumors but extensive coating. Since the cancer is in her spinal and brain fluid it will no doubt re-seed in the brain, at which point nothing more can be done since you only do whole brain once. At least the shunt will be in place so as fluid and pressure builds again there is a relief valve.

It's also possible that in ten days she decides she doesn't want to do the whole brain because of it's side effects. Or that she may not be able to because of her compromised condition. Right now she is focusing on a date - she wants to make it through the holidays. My goal is to get her home, and except for trips to the radiation treatment and doctor, never come back to the hospital again. She wants to be surrounded by friends and our boys and dogs. It also means I have to make accommodations in our house for a wheelchair - a ramp and bathroom accessibility. As well as line up visiting nurse and future hospice support. All while making our house festive for the holidays.

Being a caregiver is tough.

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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dawn dion's picture
Replies 11
Last reply 11/3/2011 - 6:45am

Hi all

I haven't posted here in a while because there has been nothing to talk about - been doing BRAF/MEK since march 2011 and as of today we (drs. and I) have decided that it is no longer working.  The one spot I have has started to grow again albeit slowly after shrinking over 70%.  Discussing many options on the table among them being IL2.     This is a option I considered doing before BRAF/MEK and I am once again thinking about.  I know there are lots of you out there with experience so I am looking to you to learn.   I remember that one of you has a great list of what to do and bring with you to the hospital when doing IL2 - would appreciate being pointed in that direction.   I won't be doing this until after the beginning of the year so if anyone else has any suggestions other than ipi (been there done that) also greatly appreciated.

Hugs and Smiles to all

Dawn

 

 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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lhaley's picture
Replies 6
Last reply 11/2/2011 - 11:24pm

Earlier in the week they had tried to further wean the steroids.  At one point I had to have my husband hold my hand for me to walk, they had tried to quickly to wean me off.   So then I was feeling better when Sat night the headache started. I felt as if someone had also punched me in the teeth and sinus - like it started originally.   Sunday morning I knew I had to call the DR.  

The MRI showed no change since the 10TH!!   While I would have like to see it shrink (SRS 2 weeks earlier) I knew it was still early. But no bleeding and no growth. The other 2 scans had shown 1cm bleed before so now to us that was good news.

The nuerosurgeon has scheduled the next MRI on the 21st. Will talk after the MRI and decide if he will immediately do the crainectomy - he said that to him there must be some shrinkage at that point.    This will just be a few days before Thanksgiving. I sure do hope that will be home and cooking dinner because will have had a beginning response!

They are keeping me 1/2 of a tablet in am and 1/2 in the pm. They are waiting another week before we try to lower the level a little.  Meanwhile I was told that no headache is acceptable.  That is gone but still  having some teeth issue.  I think I now have added some sores in the mouth and this has added.  

Feel pretty good today, and hope this continues!

Linda

http://www.caringbridge.org/visit/lindahaley

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Anonymous's picture
Anonymous
Replies 16
Last reply 11/4/2011 - 8:27am

We have an opportunity to participate in a clinical trial--ipi v. interferon.

We decided before knowing we could be in a trial that we don't want interferon, but we want to do something. From all of the research we have done, including this blog, first and second medical opinions, friends and family we made a decision. We think/hope that ipi gives us the best chance.

Clearly, it is our right to change our mind at anytime. The informed consent form makes it clear in bold letters on the front page. But since we have already made our decision, is it right. One doctor acquintance says he'd do it in a heartbeat, the clinical trial NP made it clear we needed to commit, and stick to the groundrules--Arm A or Arm B.

Life or death, black or white or gray. Right or wrong. What would you do if you were making the decision for your kid?

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