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 13
Last reply 7/21/2012 - 1:39pm

My daughter is currently planning to joinIng the current Stage 3 Yervoy trial, assuming we are lucky enough to get it. We have two questions for current  participants:

1) She just got a second opinion and we learned that the trial dosage of ipi is a lot higher than the approved dosage used to treat Stage 4, making it quite a bit more toxic. 15% supposedly get a severe reaction. Has anyone experienced this and had to drop out because of the toxicity?

2) We have heard so many stories on this site from people who took lnterferon and relapsed during the treatment or shortly after. This is one factor in my daugther choosing not to take it. We haven't come across any similar stories for the ipi trial participants. Since there isn't data available yet on relapse rates, we'd appreciate hearing about relapses during or after ipi treatment, or better yet, hearing about staying NED after treatment.

Thanks for any information you can share with us.

BC

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AlisonC's picture
Replies 10
Last reply 10/31/2011 - 7:07pm
Replies by: mombase, azurliene, jag, lhaley, Anonymous, shellebrownies

Hi MPIP people,

I used to spend a lot of time here ( started trying to have a baby and it was easier to get some mel distance) but had hoped to return later this month to announce 10 years NED (which still might happen if my insurance company stops trying to dodge the scan fee and it goes ahead). Instead, I'm back looking for information on post-surgery options for a good friend and colleague who this week progressed to stage IV with 3 brain mets. He had a large primary (not sure of breslow) removed from his scalp and bilateral neck dissections for micro mets 2 years ago. GM-CSF since. Just this week, 3 small brain mets detected after sudden nausea and pain. No visceral mets according to the PET so they will resect 2 of the mets and do SRS (I believe) on the 3rd.

I'm so out of the loop on adjuvant treatments for stage IV Mel (which I promised myself I would never do....even after 10 years I am not complacent since my own stage III met came 9 years after my primary) so any advice you have on post-surgery options would be very welcome. Any positive outcome stories would also be very welcome I'm sure, to give him some all-important hope.....

Sorry to "take" when I haven't been "giving" on this board much of late.........

AlisonC
NED since 2001

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Charlie S's picture
Replies 11
Last reply 10/23/2011 - 11:10am

I sense a bunch of esoteric bullshit relative to Yervoy,  I  would ask anyone, particularly the MRF to give an actual  definition of what constitutes "unresectable Stage III Melanoma" ?

Simple question, and I am soooooooooooooooooo looking for that answer.

Personally, I think the term/phrase  is nothing but a bunch of pimped up horse shit  for appeasement, because this definition is not affording, but rather denying STage III patients a option for a way forward.

 

Anyone?

 

Charlie S

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Karin L's picture
Replies 5
Last reply 10/23/2011 - 12:50am

I finished my last bag/4th week of IL2 on June 14.  Within a few weeks I noticed some vitiligo on my hands, forearms, and a spot on my face. That was it until yesterday when I noticed a large area on my inner thigh (size of a lemon) that just showed up.  It's been 4mos.+ since treatment.  Anyone else have this happen this long after treatment?  Just seems...strange. 

Thank you for any and all replies.

 

Karin

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I'm sorry to report a sad update. Don has developed complications due to his brain tumors. He started Whole Brain Radiation this past Monday. Each day since, Don's short term memory and general confusion got worse and worse. By Wednesday evening, he was mumbling, confused, couldn't figure out how to do simple tasks like sitting from a stand without help. 

When he finally complained of feeling dizzy and having a headache late Wednesday night, I called his oncologist. He recommended I give him a dose of steroids and see how he is doing in the morning.If he was better, then he should go to his radiation appointment as normal. If not, I should bring him in to Mass General to be admitted. Yesterday morning he was no better, in fact, his sense of equilibrium was completely shot and he was drifting in and out of sleep.

Long story short: He has brain edema and they suspect that at least one of his lesions is bleeding. As of today, he had bounced back a bit (was awake and alert, but his short term memory is still completely shot ) due to the steriods they are giving him. Dr. Lawrence came in today and told me that, with the new setback, he doesn't think that Don's cancer is still curable, that the progression is just too far ahead of any treatment they could provide that might heal him.

And before people tell me we shouldn't take that for an answer and to get second opinions... I think he's right. Don's cancer has always been very, very aggressive. I won't be at all surprised to hear that the new MRI they are doing today will show more mets, bleeding, etc. Even with continuing steriod and radiation treatment, it seems highly unlikely they are going to be able to get ahead of it before it's done too much damage to be repaired, let alone let him live long enough to wait for ipi to take effect.

I don't yet know prognosis based on what is going on now (that we should know as soon as they get a good MRI).

This has been a difficult week; I would really appreciate your prayers and good thoughts right now.

Thanks; you all are awesome!

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Anonymous's picture
Replies 5
Last reply 10/23/2011 - 3:41pm
Replies by: Anonymous, LynnLuc, Bubbles

Hi,

I am a newbiew to this site. I am stage 4 & waiting for an anti-pd1 trial or anti-pdl-1 trial to open. I have not done yervoy so this ismy first immunology treatment.

There are a few manufacturers (Curetech,Genetech, BMS & Merck) all coming out with anti-pd1 oranti-pdl-1 trials by the end ofthe year.

Does it matter who the manufacturer of the PD1 drug is? Will Curetech PD1 drug be as good as Merck PD1 drug  or BMS anti- pdl-1 drug. I guess what I am asking you, are all anti-pdl-1 &anti-pd1 drug equal and it does not matter who the manufacturer of the drug is?

Also, how does the pdl-1 &pd1 drug work? Does it work like IPI and does it take weeks for PD1 drug to work? Will there be tumor shrinkage soon after starting drug?

Do ALC go up if you are a responder to pdl-1 &pd1?

What are the signs that indicate you are a responder besides tumor shrinkage?

What are the side effects of pdl-1 & pd1? On one of the trial consent form that was given to me, it stated a side effect could be a lowing of white blood cells. That is very differenct than Yervoy where the ALC goes  up.

Any information about anti-pd1 (pdl-1) would be extremely helpful so that I know what to expect.

Thanks  so much

 

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DonnaK's picture
Replies 19
Last reply 10/17/2012 - 5:47pm

Hi. My husband was diagnosed with Melanoma (2.55mm thickness, non-ulcerated) on his chest  in July.  A follow-up WLE and SNB revealed 4 of 6 microscopic tumors in his lymph nodes, tracking to both his left and right armpit. He has since completed two completion node dissections and enrolled in the interferon vs. ipi trial.  We were really hoping he would get chosen for the ipilumimab trial but unfortunately, he lost the lottery and is scheduled to begin Interferon on Monday.  I want to make sure I'm doing to right thing by encouraging him to stay in the trial.  I've looked at all the Interferon data and I'm unimpressed, but I also can't imagine doing nothing.  He is 36 years old, and a father of a 2 year old and one more on the way. 

I've read through past posts which have been incredibly helpful, but I'd love to hear any words of encouragement as to why he should stay in Interferon side of the trial.  Also, his doctors are implanting a port on Monday since he isn't supposed to get blood drawn from either arm.  We're curious how standard this practice is and how difficult it will be to endure. 

Finally, are there any examples out there where people have been prescribed ipilumimab off-label for resectable Stage 3C Melanoma?  We've consulted with five doctors so far and I haven't found one willing to do it, but...

Thanks in advance!

Donna

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Terra's picture
Replies 6
Last reply 10/22/2011 - 6:31pm

Hi, our oncologist from Toronto spoke to me on the phone on Tuesday about Derek's ipi response on Wednesday, so we haven't actually seen him.  Last night he emailed and is suggesting scans in 3 months - is this reasonable - what are others doing?

 

Specifics:

Last ipi treatment was Aug 10, scans done at 3 weeks - no response, and then at 7 or 8 weeks and there was a response (1 tumour stable, several decreased in size by 50%, and other smaller ones had disappeared).

 

Thank you so much for your responses and I am hoping so many of you on ipi now have the same good news.

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nickmac56's picture
Replies 5
Last reply 10/23/2011 - 12:00pm

although we were worried my wife's blood count would be too low, it tested normal and she started the chemo Abraxane today. Kind of funny, even though she has short hair from the craniotomy and bald patches from the cyberknife, the first thing she said when the doc said, "good news, we can do the chemo", was, "oh, this means I lose my hair". I guess in this case it is good news to be able to put poison in your body...and yes, in 14-21 days she loses all her hair. Treatment is weekly assuming her blood counts stay up.

We've also been battling an invisible tumor - the unexplained arm pain persists - although it is being managed well with a heavier daily dose of steroids and a medication called gabapentin, which is an anti-seizure med that has nerve pain reduction qualities. She saw a neurologist yesterday and he is pretty sure there is a small tumor - maybe the size of a grain of sand - and invisible to an MRI hitting a nerve in her C6 cervical spine or in her brachial plexus. She has an EMG, nerve conduction study on Monday. If they can narrow the location down they could in theory radiate it. 

Nick

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

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Lauri England's picture
Replies 7
Last reply 10/25/2011 - 2:49pm

I had my doctor appt today with Onc.  We discussed further about the scans.  Basically the Onc was thrilled that I am feeling better after the interferon and wanted me to wait 6 months for a rescan.  He asked if I was ready to go back to work.  I informed him that I lost my job in July and with the unsure CT results would it be a good idea for me to go try to find a new job.  We decided to wait until I rescan.  I was adiment about rescans in 3 months instead of 6 and he agreed.  He basically goes along with whatever makes me comfortable.  I did get a copy of the CT scan on CD and when I schedule a 2nd opinion with U of M Melanoma clinic they will have my original scans to compare from a year ago.  Anyway some of this report is somewhat confusing to me.  It shows:

3 mm subpleural ground-glass nodule in the left upper lobe laterally.  There are no other lung nodules or masses.  No pneumothorax.

There is an approximantly 10.8mm hypodensity within the liver in the left hepatic lobe, near the fissure for the ligamentum teres.  This is only visual on the portal venous phase images, and therefore likely relates to a benign process such as focal fatty infiltrative change or differential perfision.

A prominent, approx 2.7 cm duodenal diverticulum is suspected.  Bowel loops are otherwise unremarkable.

The crazy thing is I didn't get the results in writing until after the appt so I could not ask questions.  I will have them for U of M though.  My docctor says not to worry but  how can I not.  I know the original scans did not show any of this.  They were clear.  We will see. 

 

Don't sweat the small stuff. There are bigger fish to fry!

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ad2424's picture
Replies 10
Last reply 10/21/2011 - 6:23pm
Replies by: ad2424, mombase, Lisa13

I know this is a tough, perhaps unknown question, but perhaps someone has info I have not uncovered.

I have 3 lung tumors: 6 mm, 3mm, and 3mm, with additional smaller. 3 months ago the 6 mm was 2 mm and the others were not mentioned.

Does anyone know if this is the prime time to start Yervoy? I am thinking of waiting 4-8 weeks and having another scan, trying to buy some time to possibly get on a trial of another protocal. Thanks.

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W.'s picture
Replies 5
Last reply 10/22/2011 - 9:44am
Replies by: Anonymous, Cynthia C

For those of you with relatively thick melanomas and no good option for adjuvant therapy: it might be worth looking into low dose beta blockers.

There is some evidence that they may improve prognosis, e.g. see on pubmed: http://www.ncbi.nlm.nih.gov/pubmed?term=melanoma%20beta%20blockers

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Will be interesting to see just what effect which type of cancer, which type of mutations, pathway signaling and which chemotherapy mode of operations are affected which way by exactly what.

Scientists in the Netherlands were investigating how tumors develop resistance to treatments.
Fish oil-omega 3 versus cisplatin chemotherapy  -Negative study.
http://www.earthtimes.org/health/fish-oil-supplements-chemo/1348/

for NSCLC and a common chemotherapy regime (carboplatin combined with vinorelbine or gemcitabine  --versus Fish oil-omega 3).  A positive study.
http://www.cancercarenj.com/fish-oil-may-improve-chemo-effects-in-nsclc/

Things to think about regarding the anti-fish oil study.
http://margaret.healthblogs.org/2011/09/14/fish-oil-inhibits-chemotherap...

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

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PBJ's picture
Replies 8
Last reply 10/22/2011 - 10:03am

I am new to the MRF and constantly up late at night searching for any type of enlightenment and encouragement in my husband's battle with this disease.   But alas!!!!  In all of my research over the past two and a half months, I have learned so much but can still seem to find no clear resolution as to the most effective adjuvant protocol.  My husband first noticed a lesion in the anterior submandibular area (near his jawline) in Level II of his cervical region (so upper neck at jawline) in 2003.  Due to a primary care physician's casual dismissal of the lesion in the Fall of that year, he was not officially diagnosed by a dermatologist with melanoma until March 2007 after obtaining the results of a punch biopsy.  At which time he was diagnosed as Stage1b - with lentigo maligna melanoma in a non ulcerated form, possessing a Breslow depth of 1.35mm, a mitotic rate of 2, and finally a Clark Level of IV.  He received a WLE and a SLN biopsy later in March 2007.  He received NED on the two nodes thought to be the sentinel draining nodes.  After a follow up resection, he was confirmed to have clear margins, which exceeded the recommended 1cm.  Fast forward to July of 2011 when he noticed a slight enlargement of a lymph node within a few centimeters of his original tumor site.  After a CAT scan and FNA, we learned that his melanoma had returned consequently escalating his stage to 3b at minimum.   He proceeded with a modified radical neck dissection in August to remove 39 nodes in Levels I through V and is recovering nicely.   In the interim since the surgery and after numerous requests for ALL of his records including PATHOLOGY, we learned through the reports of the lymphoscintography procedure from the SLN biopsy that this node was most likely left in since the 2007 surgery as the background counts reported were much higher than the recommended 1/3 ratio of the initial in vivo count.  Ironically the node that he discovered was in the intraparotid area, which we later learned was cited on the report as a problem area from which to extract nodes. THANK THE GOOD LORD!!!  Only the one palpable node came back positive with the pathologist reporting 60% of the node to contain melanoma and no extracapsular involvement was confirmed.  We are considering an ippi trial but I have some questions as to the efficacy of the ippi if one tests positive for a preexisting antibody to the NY-ESO-1 antigen.  Given that my husband is a testicular cancer survivor of 20 years, I was particularly curious as this antigen is a cancer testis antigen and expresses in over 50% of cancerous tissues but not in normal tissues other than the testis in fetal stages.  Given that his bout with testicular cancer might have resulted in a subsequent antibody development coupled with the recent discovery of a reduced effectiveness of Ippi on those patients possessing this antibody, I am itching to determine if he is expressing this antigen.  If not, then has he developed the antibody?  We are reluctant to proceed with the Ippi given its toxicities if his benefit will most likely be reduced. Has anyone here been tested for this expression and where?  If so, did you proceed with the Ippi and was it effective?  I have seen some research of late (literally only published on Oct. 4 2011) that states that there is some question as to the degree of efficacy on Ippi patients who possess this antibody prior to the start of the drug.  My inclination is that these may be some of the "late responders"..just a notion?.  It is interesting to note the tumor antigen specific correlations with all of the current treatments available - Ippi, IFN a, and others.  Also, I have read of a tumor specific expression that correlates to the success ratio of Interferon.  Has anyone had this test run?  Has anyone ventured "down under" to try the current vaccine trials by Oncovex?  All feedback is welcome!!!  

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dearfoam's picture
Replies 13
Last reply 10/26/2011 - 7:13pm

Does anyone have experience with medical alert systems? I had one set up for grandmother years ago, but it was through a regular land line. Dad is still a fall risk, and thought he doesn't need constant supervision, I do worry about when I need to run extended errands and no one is available. He isn't able to live on his own, but this would be for back up if he fall sin the night in the bathroom and I don't wake up to hear it, or if I am at the neighbor's house or store, etc.

We use cell phones only, and have wireless internet. I saw one company that has a "no phone line needed" system (it has it's own ATTcelular based service).

http://www.med-alert.org/medical-alert-systems/No-Phone-Line-Med-Alert.html

Any thoughts? We could get a land line if we had to. All the sitters we have used so far always have their own cell phones, and dad has his own, too. I just don't know if he would really push the help button if it were needed. He tends to deny symptoms/ problems, however obvious they may be. I have tried to establish safety rules too, such as only getting a shower or going for walks when someone is awake and present to listen/ look out for him, etc.

He's been more fatigued on this the 6th round of temodar. He had a few near falls a couple weeks ago (preceding the hospital visit), and still has not been as good as he was a month or two ago, even with extra dechadron (2mg) to reduce his brain edema. I took him to a funeral yesterday, and after standing a combined total of 40 minutes, he was walking very poorly when we left, as in leaning back very awkwardly. He refused to sit down to socialize though there were chairs and pews available right were he was talking before and after the short service. At the time denied feeling off. He was exhausted after the trip, but really did almost nothing else the whole day. Says he "overdid it" yesterday and denies feeling weak or off balance. I just worry he can't tell when he needs to take a break and allow himself not to over do it, and will fall in the house trying to do something he should know better not to do.

Thanks,

DF

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