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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AllyNTAus's picture
Replies 9
Last reply 7/8/2013 - 10:52pm

So I went for my scans and reviews today at the end of cycle 4 on the Novartis BRAF/MEK inhibitor combination. I had a feeling that things might not be looking all that good because I just haven't been feeling 100% well for the last few weeks, nothing really solid I could define except for some very grumbly, gassy abdominal symptoms that have waxed and waned, so if anything I was thinking there might be something going on in my intestinal tract.

What I wasn't expecting was to be told that I have a fairly large cardiac met, 30mm diameter, 40mm high, in the right atrium. What surprised me even more was to see the report saying that this met was apparently "more subtle" and somewhat smaller on my previous 2 scans (May and April), but the reports on those two scans didn't mention it at all! I'm a bit bemused and peeved about that.

Various lymph nodes throughout my lower abdominal/pelvic region have grown too and there are some new nodules showing up, so it has really taken off.

So I am seeing a cardio thoracic surgeon on Wednesday to discuss the possibility of surgical removal. If this isn't possible then it will be radiotherapy. Clearly the cardiac met is serious stuff and needs some immediate aggressive treatment. After I am well enough the plan is to start on Ipi, which thankfully has just been put on our government subsidised medicines list. And my doctor tells me that if Ipi doesn't work then
Anti PD1 should still be an option, there are just not any trial seats for it (either alone or in combo with Ipi) just at the moment.

Aargh what a rollercoaster! Would be interested to hear from anyone else with experience of cardiac mets.
Ally

A bad day's fishing beats a good day's work everytime

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toes123's picture
Replies 2
Last reply 7/2/2013 - 12:21pm
Replies by: Anonymous

I have scheduled a visit with a doctor but in the meantime can someone give their opinion if this looks like a early stage melanoma ? I am worried

because it is on the side of my toe ??? 

http://postimg.org/image/973xrh8dt/

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I have scheduled a visit with a doctor but in the meantime can someone give their opinion if this looks like a early stage melanoma ? I am worried

because it is on the side of my toe ??? 

http://postimg.org/image/973xrh8dt/

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deardad's picture
Replies 2
Last reply 7/2/2013 - 5:04pm
Replies by: deardad, benp

Hi just wondering if anyone knows how benp from Darlinghurst is doing? He hasn't posted here for a while. Hope you are doing ok.

Nahmi from Melbourne

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http://clinicaltrials.gov/ct2/show/NCT01738139

The goal of this clinical research study is to find the highest tolerable dose of the combination of ipilimumab and imatinib that can be given to patients with advanced cancer. The safety of this drug combination will also be studied.

Ipilimumab is designed to increase the immune system's ability to fight cancer.

Imatinib is designed to bind to certain proteins on the tumor cells, which may prevent the cells from growing.

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

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Hi Linda,

Is SRS a go for Bill Monday?

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

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François's picture
Replies 1
Last reply 6/30/2013 - 8:50am
Replies by: Tina D

I just finished my 6th month on Zelboraf, 8 pills a day, having CT scan every 8 weeks showing that 3 lungs mets disappeared since the very beginning of the treatment. Last week ct scan results showed 3 new 20 mm spots on the liver. Radiologist suggest that they could be mets but my onc is a bit surprised and He book me a Pet scan next week. He doesn't believe that lungs mets didn't come back at the time that liver mets are 20 mm, considering that previous ct was cleared. I am very disappointed because I feel very good, no pain, except typical side effects. Two years ago after being 2 weeks on the hospital after surgery and having 3000mg every day of Paracetamol, I had the same problem with a Pet that showed 2 doubtful met that finally were nothing. Today, due to Vemurafenib, I have my GGT up in the clouds raising at 600/800 and I hope it could be the answer. I also had previously fatty lever due to alcohol ingestion. I will keep you informed.

François

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flvermonter's picture
Replies 2
Last reply 6/30/2013 - 3:47pm
Replies by: flvermonter, kylez

Hello again,

we had great news on the lung cancer once radiation..only 5 SMS radiation treatments. meet with melanoma once this wed. for plan of radiation.

however, his left arm was so swollen and now with the compression sleeve is sost back to normal. the swelling in his legs we went yo our MD. he did ekh and was OK. the blood work came back with indication of Cong heart failure. we need to meet with the MD. will that stop his radiation? he doesn't want to tell Moffitt afraid he wont get the treatment. I am so afraid and stressed.

Hugs to all, patients and care givers.

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pamkepler's picture
Replies 1
Last reply 7/2/2013 - 3:38pm
Replies by: 5374brian

My husband has been diagnosed with metastatic melanoma oct 2012. He has been on Yervoy, Zelboraf, and now anti pd1. I was looking for caregivers of patients that are on this same journey:) Blessings to those fighting patients and caregivers!!!

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Anonymous's picture
Replies 5
Last reply 7/1/2013 - 11:09am
Replies by: awillett1991, Anonymous

Sorry to be anon here, just scared. Recent MRI showed a new 5mm met near the outside area of my brain which had grown from 3mm on prior scan 2 mo ago to 5mm. I was "stable" to get Into the trial - as in they didn't notice it. Dr says as long as they don't treat it, I am still in the trial. is this really right? Oncologist not worried about it and rad onc says location is "good" he is fine w watch & wait as it seems to be growing very slowly. MRI states

There is a 3rd enhancing lesion in the left parasagittal parietal lobe which measures 5 mm (previously measuring 3 mm).

Very nervous abt this whole thing. Sounds nuts not to treat but need the trial.. also though, have other life threatening areas much bigger, inoperable, and more important and desperate for this PD1 to work having run thru the usual suspect drugs. Not very far into the trial - only a few doses.

Any advice?

THX!!

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Jamietk's picture
Replies 2
Last reply 6/29/2013 - 9:15pm
Replies by: BrianP, Jamietk

Wish I could be here only to drop in and say hello and send well wishes to everyone. Instead, I am here with concern and would be very grateful for any experiences you could share. Brief history: In August it will be 8 years since I had my melanoma removed. It was barely stage IIA, 2.1mm, on my right arm. No lymph nodes involved. I am seen at MDA annually. Recently, I have been having some issues. I was diagnosed a few weeks ago with severe anemia. Some bloodwork has been run that tells us it is less likely to be vitamin deficiency or bone marrow/blood disorders, and more likely due to bleeding (which is typically from heavy menstrual cycles, ulcers/aspirin, or tumors/cancer, specifically colon cancer). Now here's the deal, I do have extremely heavy menstrual cycles and started on high dose aspirin a year ago to reduce heart and stroke risks. The only symptoms I've developed in the last few months is nerve issues. my entire left side of my body gets electrical shocks and a heaviness, as well as numbness in my face. I've been hospitalized after one of these nerve "attacks" and ruled out stroke and heart attack. Had MRI of brain and echo on heart. Still having the frequent nerve issues, to the point where I can sit here and feel the electrical shock go through the left side of my body and make my toes move.I feel it under my arm, left lower forearm, left elbow, left side of calf, toes, and pinky finger. And I am EXTREMELY fatigued from the anemia. My blood levels are less than half what they should be. My primary Dr. is sending me to a G.I. next week. The only real G.I. issue I notice is lately I've felt like my liver is having spasms, and yet the left side of my abdomen looks a little larger to me. I am overweight though so its hard to tell.  My Cardio agrees with this plan. They both say if nothing is found with G.I. workup then I'll be sent to a hematologist. I am also scheduled with f/u w/ neurologist in July to do some nerve tests. And I am supposed to start getting physical therapy because the strength on the left side of my body is diminished and I have balance issues. So I am trying very hard to convince myself that the anemia is a combination of not enough iron (I don't eat much red meat), heavy cycles, and the recent addition of high dose aspirin. And I'm trying to convince myself that the nerve issues are from a pinched nerve. And I'm trying to convince myself the liver sensations are from enlarged liver maybe from gaining weight. And any one of those alone is easy to convince myself. But one common cause of all of these symptoms could be cancer/tumor so of course that's where my mind is going since they all started about the same time, 3 months ago.

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ecc26's picture
Replies 6
Last reply 6/30/2013 - 10:42pm
Replies by: Phil S, ecc26, DeniseK

Hello, 

Nearly finished (1 day left) with a 3 week course of WBR and mostly doing just fine, but over the last 4-5 days my ear canals have gotten sore. I'm aware that this is not uncommon for a side effect, but I'm wondering if there's anything I can do to help ease the discomfort- especially at night since it does keep me awake some. I know that some advocate ear rinses, etc but my understanding of those is that they help clear debris, not relieve discomfort. Any suggestions from those who have done WBR?

Thanks

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I just found out a week ago that Scott's life insurance policy has an accelerated benefit.  You can take half of the policy money up front and then the remaining half is paid out to your beneficiary upon your death.  I thought I'd share the info because I ran into it on a whim and would have never known.  No social worker, HR person or otherwise had mentioned it.  It appears that most policies have this.  If you are interested, find your policy and read up.  

The money could be a great help for travel to trials, paying cobra or whatever, you can even take a vacation.  They don't care what you do with it. It's required that your physician state that you have 12 months or less to live.  But there is no pay back required if you don't die. 

Just thought I'd let everyone know and hopefully it can help someone else out. 

Lisa (Scott's wife)

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mama1960's picture
Replies 7
Last reply 6/29/2013 - 7:42pm

Ok, lots of narcotics involved just typed for 15 min and managed not to post a word! Mel moved to bones 2-3 months ago. 3 fractures, both upper arms, right groin, just from bone thinning.LOTS is pain. hit the wall about 12 days ago. Doc put me in hospital. New bone scan 4 weeks into Zelboraf showed lots of new tumors in ribs, so stopped that. Did a 3 drug chemo mix for a quick knockdown, hopefully. Can't name them, doc said they came up with it at MD Anderson. Waiting for insurance to approve moving to rehab to get me on my feet and home. Then, Temodar? Can't remember for sure. Don't know if I will be back to work in 2 weeks, 2 months, or ever! How so we deal with all of this?

It is what it is.

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SarahW's picture
Replies 4
Last reply 6/28/2013 - 6:20pm
Replies by: Brendan, SarahW, DeniseK

Hi all,

My husband's SRS for 3 brain mets in the frontal lobe(the largest is 2.6mm-however there were none 8 weeks earlier) has been scheduled for July 3 @ Moffitt. I gave him a list of questions to ask the Radiation Oncologist. He wouldn't let me come to the appointment. I got some answers, but not quite as much information as I would have liked. The radiation oncologist advised him that I will need to drive him, which of course I was planning to do

To the question of whether he would need to be placed on anti-seizure medication and/or steroids, the answer was "It depends on how he does post-procedure."  So I guess I should be prepared for anything?

Thank you to those who replied to my earlier post. Any other thoughts?

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