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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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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dearfoam's picture
Replies 2
Last reply 10/20/2011 - 1:02pm

So I took dad to his followup with his Oncologist last week. He and the neurosuregeon had decided right now it was too risky to do a needle biopsy of any brain tumors to test for the BRAF mutation. So I brought up his moles. I thought maybe it would be too obvious of an answer to the biopsy question, but dad had a mole that was starting to bleed (since his last visit). A referral to the dermatologist was made for a few das later, and she took three moles off his torso and back, which ALL came back positive for melanoma. They were all sent off from BRAF testing and we will hear back in a week or two. I was sleeping when she called, but I recall she said that two seemed to be in situ, but could also possibly be mets from the current melanoma. The ulcerated one seemed colorless. That spooks me out. I guess I need to call back and ask them to repeat the report.

Background: Dad's primary is to me unknown. He apparently had some type of melanoma removed form his neck in 2003 or so, but I don't have that information. It was not something he remembered being melanoma, but his ex from that time told me over the phone that it was. It was all after we got his biopsy (via lung tumors) in April. Dad was never proactive in his health, and says his doctor never told him and his wife must've hidden the facts from him. Dad was also having memory problems due to the brain mets so I didn't know if he really believed that or not. He always makes light of serious situations, so I tend to not believe him.

Regardless, since we had a new clear biopsy in April for something that APPEARED was gogin to be ending his life very quickly, I never pushed for this old information. Now things are more stable and I am curious. What did this doctor communicate to my dad? What went to the ex? Why were there no follow ups? I know he went in for two procedures - there is a wide scar on his neck where I assume the got clear margins, or something.

Do multiples moles develop from one instance of melanoma, or are they individual melanomas? Will some be BRAF positive and other not? I just wonder if the will match the melanoma in his brain, lungs, and elsewhere. Also, why don't these moles show up on the 8 or so CT scans he has had since March?

Thanks,

DF

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justlittleoleme's picture
Replies 11
Last reply 10/20/2011 - 8:15pm
Replies by: Anonymous, mombase, Richard_K, lhaley, LynnLuc, Charlie S, MaryD, Janner

I was informed today that most insurance companies don't cover clinical trials. Those of you who have participated in them, did your insurance cover your costs?
The clinical nurse said that we need to understand our benefits as they only verify benefits. She cautioned us against letting the insurance company know that we are looking to do a trial. I don't understand how to ask if the trial is covered without asking the question. Any thoughts?

We don't know how strong we are until being strong is the only choice we have.

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Angela C's picture
Replies 3
Last reply 10/20/2011 - 6:28am
Replies by: j.m.l., mombase, Anonymous

Hello.

I just had my third Yervoy infusion yesterday. One the two hour drive home from the hospital, I started to notice some achiness in my thigh and leg area. That continued into today. I just took my temperature and I am running a low grade fever. Normal for me is 97.9 and it is 99.1. So, I'm guessing the achiness is related to the fever.

Has anyone else experienced fever? I guess it's possible it isn't treatment related and I could be getting sick. I have not felt quite right for a few days now with sinus headaches and general fatigue. But, maybe this a good sign and it means my immune system is kicking in.

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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rbruce's picture
Replies 11
Last reply 10/23/2011 - 11:07am

Started a clinical trial at UCSF for a p13k inhibitor trial, http://clinicaltrials.gov/ct2/show/NCT00972686  I had debated on waiting for a PD1 trial but after seeing the Melanoma Molecular Disease Model at http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_Model   I decided to give the P13k trial a shot as it is listed as the "potentially revelant theraputic" for the NRAS mutation which I have, not BRAF like so many others.  This is the first time I ever saw a NRAS theraputic option!  The Melanoma Molecular Disease Model is meant to be collaborative by researchers and represents an awesome data collection point for all the different melanoma mutations.   

The trial started with lots of tests for qualifying then a a 24 hour stay the first day of dosing so they could collect data via blood, ekg's, vitals, etc.  I was advised that I was the highest dosed patient in the trial so far (twice the doseage)  which made me worry a bit.  My Doctor just said "well, that's twice the potential for it to work".  I was really worried about the side effects after spending 4 weeks in the hospital over 16 weeks of biochemo.  WELL, so far, so good.  No side effects other than I'm a bit tired.  If this is the "new way of treating cancer", I'm in!  Plus, my Doctor will move me over to the PD-1 trial if we don't see some results after my scans at 6 weeks.

I'm having a really good day!  Hope you do as well. 

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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SarahS's picture
Replies 8
Last reply 10/21/2011 - 2:46pm

Hi everyone,

Haven't posted in a long time (maybe 3 years ago or so), but I occasionally pop on to see how everyone is doing. Well I'm here today b/c I have a few questions. A little background info on me: I was diagnosed in 2003 with stage 1 mel on my back, then stage 0 (thin mel) on my left arm in 2005, then in 2006 I was diagnosed with stage 3a mel on the back of my right leg with micromets to 1 node in right groin. I had all the lypmh nodes removed in my right groin, then started interferon in Feb. of 2007, which I ended in Oct. 2007 b/c of side effects and depression. I've been cancer-free since.

Fast forward 3 years and I received the go-ahead from my oncologist to start trying to have a baby (I'm 29 yrs old, almost 30). I got pregnant pretty quickly in Feb. 2011, but had a missed miscarriage in April -- no heartbeat found at my 12 week ultrasound (baby measured around around 7 weeks). I had a d&c several days later. Now skip ahead to September and I found out I was pregnant again. At 7 weeks, we had an ultrasound and found a strong heartbeat (156bpm). We were really excited, the doc said after you see a heartbeat the risk of miscarriage goes down to 5%. Well a few days later, I had a bit of spotting and they had me come in for another ultrasound; this time the heart rate had dropped significantly (down to 100bpm), and there was little growth. This was early last week. On Monday, I had another ultrasound to confirm the heart had stopped, which it did, and I was scheduled for a d&c, which happened yesterday - I was almost 9 weeks. The doc will be doing some testing at 6 weeks post-miscarriage to see if I have a blood clotting disorder, and if I do, it would prevent the placenta and baby from developing properly. Hopefully I'll have some answers in a couple of months.

So here are my questions:

 - Before I had the interferon, I was told it would probably not interfere with fertility, but of course I have to wonder... have any of you had problems with miscarriage after interferon?

 - I'm also wondering if all these ups and downs with my hormones (with the last 2 pregnancies over the last 9 months) could somehow affect my health negatively at some point, and possibly cause me recur or get a new primary? I have many moles, so I see a derm and oncologist every 3-4 months. I seem to develop new moles all the time. Guess I'm worried that all the ups and downs with my hormones could possibly make my moles change more rapidly. Also, at some point in the last year, I developed a mole inside my eyeball, discovered at my last eye appointment a couple months ago. No idea when it actually developed, I just know it happened in the last year. The eye doc said it's fairly common, about 10% of the population have a mole or "freckle" in their eye, but this really freaks me out, my great-grandfather died from melanoma in his eye.

 - Finally, if they do find I have a blood clotting issue, they'll recommend a baby aspirin every day and they'll also prescribe Lovenox, an anticoagulant, which would be an injection I'd take each day starting when I get pregnant again. So, my question and I hate to think about the worse case scenario, BUT worst case scenario, I develop mel while pregnant, and if my blood is thinner, could the cancer travel around faster? I just have no idea.

My derm and oncologist have both said in the past that pregnancy can change moles, but there's no definitive link between pregnancy and melanoma. Tomorrow I have my regular appt with my oncologist and will ask him all my questions, but I'm just wondering if any of you have any experiences with pregnancy, miscarriage, and melanoma.

My husband and I are talking about trying one, maybe two, more times and if it doesn't happen, or there's a chance that my health could be negatively affected by all these pregnancies/miscarriages, then we'll seriously look into adoption.

Thank you in advance for any advice and/or experiences you can share!

Never say never...

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Hi everyone,

Haven't posted in a long time (maybe 3 years ago or so), but I occasionally pop on to see how everyone is doing. Well I'm here today b/c I have a few questions. A little background info on me: I was diagnosed in 2003 with stage 1 mel on my back, then stage 0 (thin mel) on my left arm in 2005, then in 2006 I was diagnosed with stage 3a mel on the back of my right leg with micromets to 1 node in right groin. I had all the lypmh nodes removed in my right groin, then started interferon in Feb. of 2007, which I ended in Oct. 2007 b/c of side effects and depression. I've been cancer-free since.

Fast forward 3 years and I received the go-ahead from my oncologist to start trying to have a baby (I'm 29 yrs old, almost 30). I got pregnant pretty quickly in Feb. 2011, but had a missed miscarriage in April -- no heartbeat found at my 12 week ultrasound (baby measured around around 7 weeks). I had a d&c several days later. Now skip ahead to September and I found out I was pregnant again. At 7 weeks, we had an ultrasound and found a strong heartbeat (156bpm). We were really excited, the doc said after you see a heartbeat the risk of miscarriage goes down to 5%. Well a few days later, I had a bit of spotting and they had me come in for another ultrasound; this time the heart rate had dropped significantly (down to 100bpm), and there was little growth. This was early last week. On Monday, I had another ultrasound to confirm the heart had stopped, which it did, and I was scheduled for a d&c, which happened yesterday - I was almost 9 weeks. The doc will be doing some testing at 6 weeks post-miscarriage to see if I have a blood clotting disorder, and if I do, it would prevent the placenta and baby from developing properly. Hopefully I'll have some answers in a couple of months.

So here are my questions:

 - Before I had the interferon, I was told it would probably not interfere with fertility, but of course I have to wonder... have any of you had problems with miscarriage after interferon?

 - I'm also wondering if all these ups and downs with my hormones (with the last 2 pregnancies over the last 9 months) could somehow affect my health negatively at some point, and possibly cause me recur or get a new primary? I have many moles, so I see a derm and oncologist every 3-4 months. I seem to develop new moles all the time. Guess I'm worried that all the ups and downs with my hormones could possibly make my moles change more rapidly. Also, at some point in the last year, I developed a mole inside my eyeball, discovered at my last eye appointment a couple months ago. No idea when it actually developed, I just know it happened in the last year. The eye doc said it's fairly common, about 10% of the population have a mole or "freckle" in their eye, but this really freaks me out, my great-grandfather died from melanoma in his eye.

 - Finally, if they do find I have a blood clotting issue, they'll recommend a baby aspirin every day and they'll also prescribe Lovenox, an anticoagulant, which would be an injection I'd take each day starting when I get pregnant again. So, my question and I hate to think about the worse case scenario, BUT worst case scenario, I develop mel while pregnant, and if my blood is thinner, could the cancer travel around faster? I just have no idea.

My derm and oncologist have both said in the past that pregnancy can change moles, but there's no definitive link between pregnancy and melanoma. Tomorrow I have my regular appt with my oncologist and will ask him all my questions, but I'm just wondering if any of you have any experiences with pregnancy, miscarriage, and melanoma.

My husband and I are talking about trying one, maybe two, more times and if it doesn't happen, or there's a chance that my health could be negatively affected by all these pregnancies/miscarriages, then we'll seriously look into adoption.

Thank you in advance for any advice and/or experiences you can share!

Never say never...

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lizzykittycat's picture
Replies 11
Last reply 10/21/2011 - 2:08pm

hello community,

today is my first day on this site.  before this, the only message board i frequented was the bump to commiserate with my fellow new moms.

i have a new recent battle to surmount other than trying to figure out why my 13 month old seems to be throwing tantrums 24/7.

i am recently diagnosed stage 3a melanoma.  my first biopsy came from a suspicious mole in aug.  i then underwent the excision in my lower leg and removal of 2 sentinal nodes in my groin.  i was given results on fri that both of the nodes had cancer.  one had a cluster of cells and the other had scattered.  i was devastated.  and i still am.  :(  my life seems to have just started to fall into place.  38 yo, married to an amazing man for 3 years, a new baby... what more could i ask for?

so here i am.  for the past few months, i've been forcing myself to stay off of the internet.  it was overwhelming and superscary.  i was hoping for positive news last week.  now that i know for sure that this is a major fight, i need to educate myself and arm myself... bc i plan to fight.

i have only been able to make a connection with a cousin of a friend who has been through a similar situation.

i'm starting to look into what trials are available.  so far it seems that the most recent are yervoy and zelboraf??  how and when would one know if they have the necessary gene to allow zelboraf to work?

if anyone has any suggestions, pearls of wisdom, kind words, i'd totally appreciate it.  i have zero experience with cancer in general.  please forgive if i've misused terms, etc.  i'm a newbie.

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