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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janP's picture
Replies 3
Last reply 10/21/2011 - 9:31am

 Thank you all for your bravery and sharing of stories and information.  I lurk here on occasion, but now I need some feedback.  Originally diagnosed in 1992, I'm stage IV since l998, with 2 subsequent bouts of mets....no surgery since 2000, however I did have a new insitu melanoma and a regressed melanoma in 2005.  A recent PET scan shows FDG accumulation in left supra hilum which corresponds to a  lymph node with SUV 2.77 measuring 1.2 cm x 1.1 cm.  No other hypermetabolic activity noted.   I have been very viligant and proactive in my care...doing scans every 3 months for all these years.  Because of the frequency of my monitoring all mets have been diagnosed by scan before any symptoms have had a chance to appear.  My oncologist is out of the country on vacation, and his office has scheduled an appointment with a pulmonary specialist on Nov 11.  I feel this is too long to wait.  Any feedback would be so appreciated. 

janP

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AlanM's picture
Replies 16
Last reply 10/21/2011 - 7:46am

I had my second infusion of Yervoy on September 7th. About a week after the infusion I started having symptoms of colitis and my doctor started me on prednisone. I continued increasing the dose over the course of a couple of weeks until I was up 100mg per day with worsening symptoms (no perferation but believe me they were bad) to the point where I was checked into the hospital for a three day stay! While there they gave me a single dose of Imfliximab (Remicade) which finally had me turn the corner and relieve the symptoms.  Over the last two weeks I have been gradually reducing the steroid dose and yesterday was my final dose!  Given my reaction to the last infusion my doctor does not recommend another infusion. He told me that I shouldn't be thinking in terms of the number of doses, rather I should feel assured that my immune system was revved up by the two that I received. 

Have others here had good/lasting results with an abbreviated cycle of Yervoy? 

Alan

 

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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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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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Anonymous's picture
Replies 10
Last reply 10/20/2011 - 11:41am
Replies by: Anonymous, bcl, Harry in Fair Oaks

But there is a question as to what capacity.  ANyone heard anything?

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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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Terra's picture
Replies 19
Last reply 10/20/2011 - 6:04am

Hi!  We just received news yesterday morning that Derek is a late responder to ipi! 

His last injection was Aug 10 and follow up scans showed both larger mets and new mets in liver, a new met behind eye, and a larger one in lung.  He was given immediate radiation to eye and lung for 5 days because the met in lung was encasing his bronchial tube and he could hardly breathe and after that they suggested chemo for palliative care and he was given 2-3 mos. 

We contacted NCI for TIL immediately and after 1st visit we were told he needed to wait 3 wks for radiation to work in lung and steroids to get out of his system.  On pins and needles we returned home and waited, Derek had to redo a pulmonary function test and be rescanned at home before he was able to return - I think they had given up on him but strangely enough the radiation worked on his lung and his breathing test was much better so he was admitted to NCI on Sunday had an MRI on Monday - brain was clear, spent yesterday morning with the surgeon, etc to get ready for liver surgery today - in the meantime I had sent his scan to Toronto to be compared with his ipi scans on off chance he was a late responder (I wasn't holding out much hope but you just have to do these things). 

Derek had left for Washington with his dad on Sunday and yesterday I received a call from our oncologist in Toronto with the best news - he had just received the scan and said the radiologist confirmed that one met in his liver appears to be stable, several mets have decreased by 50%, and still others have disappeared into the haze!

They contacted Washington and Derek was released (just before surgery!) - so he is on his way home today! 

We are happy and guarded - not knowing what to expect next and stunned by the only good news we have received in over 5 years - 3 babies and several treatments, clinical trials, major surgeries, and minor surgeries later it is hard to know what to do or think!

Thank-you to so many of you for your thoughts and prayers!

I will keep you updated!

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mom3girlsFL's picture
Replies 2
Last reply 10/20/2011 - 4:50am

It's going to be a needle biopsy Monday morning to see if the popliteal node is mel.  I requested this doc who did my obturator node biopsy and gave me my results as soon as I woke up so I am hoping for the same Monday.  Of course, I am hoping he says it's a good ol' infection instead of mel....hey, a girl can dream, right?

Have a great day everyone!

Laurie

Do not fear tomorrow, God is already there.

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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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TracyLee's picture
Replies 6
Last reply 10/19/2011 - 7:47pm

Hi y'all,

Anyone else done ipi first, then BRAF immediately following?

My hair is really thinning. I've called the BRAF helpline, but they can't say if it will stop thinning or I'll lose it all?

I'm responding terrifically, so I'll certainly deal with the hair issue. I work full time, feel great, so who am I to complain?!

This Friday is squish-o-gram (mammogram for you guys) for lump in breast. Monday is CT scans, follow up from BRAF and ipi.

Helpline says I'm the first to report breast lump, only the second to have fairly severe ereythema nodosums (painful lumps, come and go). Yes, I'm SPECIAL, I always tell my husband that.  :)

Soooooo happy for the positive posts, lifting everyone lurking or posting, whether in the valley or on the mountaintop, in prayer.

TracyLee

Stage IV

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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mombase's picture
Replies 3
Last reply 10/19/2011 - 7:42pm
Replies by: mombase, jag, triciad

Wow, nothing really fit to print! I had my second infusion yesterday morning, and I have fewer side effects (so far) than I had after the first infusion! I met briefliy with my onc and he said that my numbers from blood tests are great. I couldn't be happier right now. Oh, shoot, here come the tummy rumbles!

Cristy, Stage IV

Getter done!

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justlittleoleme's picture
Replies 13
Last reply 10/19/2011 - 2:48pm

Long week last week.  We met Tuesday with the surgeon for a post op check up.  She removed a skin tag that was disrupted during surgery (path came back clear!)   We met with Dr. Christopher Lao at University of Michigan.  He went over the same three options the other oncolgists did.  Wednesday we met with the local radiation oncologist.  Friday back to IU Simon Cancer Center.  First stop brain MRI (clean!!!!) next with our oncologist Dr. Leslie Fecher.  We enrolled in the E1609 interferon vs. ipi.  Our only basic option since he is Stage 3B.

Radiation starts tomorrow and he will have five treatments.  We are waiting to hear all the goodies about the trial.

Not looking forward to moving away from our kids for a month if we get the interferon arm but it will all work out.

Please share your experiences with interferon, ipi or radiation.  Any tips?  I have Jane's website bookmarked!

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

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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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SStamps's picture
Replies 6
Last reply 10/19/2011 - 1:04pm

My husband received his last ipi treatment at the end of September we have gone back for CT and MRI all tumors are shrinking some brain mets do not show up. We do not go back to Houston until November 21st for another CT and MRI.  So the last couple of weeks have been great, Mickey (my husband) has been more active working longer hours and back to golfing.  Today he is defending his club champion title and I am so happy for him that he feels good enough to play.  So this week he has been complaining of pain in his left buttock.  When he sits to relax or getting out of vehicle he is stiff and hurts when he takes a few steps.  He said it feels a better and swears it is a muscle.  After searching I am concerned.  I will call Dr tomorrow but can anyone tell me if it feels like a sore muscle?

Thanks

SStamps

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Staci's picture
Replies 6
Last reply 10/19/2011 - 12:52pm
Replies by: boot2aboot, Tim--MRF, Staci, Anonymous

Does anyone have any experience wiht Yttruim 90 for liver mets? Any insight would be welcome please.

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