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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Sherron's picture
Replies 3
Last reply 6/11/2011 - 11:34am
Replies by: Carol Taylor, Sherron

My computer at home is still not working....Sending Hugs, Love, and Prayers to Eric & Jill.

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dewdads's picture
Replies 8
Last reply 6/11/2011 - 11:16am

I am trying to use this format to get and give information regarding the test drug Eisal E7080.  I took my first dose on 1/3/11. I also took an baseline PET/CAT and MRI on that day. At 28 days another CAT Scan showed the lesions had lost 1/2 of their volume.  Day before yesterday I took my second CAT under the E7080 protocal.  I think I am one of the first people to get this second scan.  I am very pleased to say that the SCAN showed that the size of the metstisis in my lungs have not increased since the second scan and there appear to be several fewer lesions, even though I had missed 4 weeks of the treatment.

I started with 24 meg  for 28 days and had my first CAT Scan  It showed the lesions had decreased but I  had to quit because the side effects I was experiencing were so bad that I could not endure them.   At that time I took my second CAT scan I went off the drug for 14 days and within 3 days I was starting to clear up some serious symptoms.  Wen I  resumed the medication at 20 meg  I was begining to repeat the symptoms within 3 days.  I was taken off for 10 days and at a third 4 week period went back on at a dosage of 14 meg.  While it has not been pleasant I can live with this dosage and the side effects I am experiencing.  These are mostly fatigue and unsteadiness.  I an experiencing muscIe and joint pain in my extremities.  My appetite remains this time.

I know that University of Colorado at Aurora is sponsoring E7080 trials.  I would like to make contact with people from this site and the other brave souls around the US who are involved with these tests.  I hope you all are experience the positive results I have had.

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Nebr78's picture
Replies 9
Last reply 6/11/2011 - 10:29am

Well, I opened my big fat mouth when it would have better to keep it shut.  I am the guy that has a friend that knew 2-3 persons that went to Mexico and came back supposedly cured.  (I got some emails that were quite disagreeable with my statement, quite disagreeable.  Thats ok.

My friend has reported to me they found a tumor on the neck of one of them.   They biospied it and he has  Mr. M. on his thyroid.   Friend said the guy spent $30,000 for what.

I apologize for maybe upsetting some people.  Of course it don't hurt to stir the pot once in a while.

The United States is not curing many people either.  I have 8 more radiation shots on the melanoma that has entered my spine.  Don't know how much chemo I have left.  I still can't help think there should have been a cure found by now, or at least  a treatment that will slow any and all Melanoma down promptly.  I  am having a bit of trouble getting a copy of my previous 2 ct-scans, one 6 wks. ago and the other maybe 9 months ago.  I want pictures of them.

I wish I could post the image that was made for me of the last scan.  And the  answer as to why in the h__they didn't start this radiation sooner. (Maybe someone sent them to Mexico????????) It is a darn good picture of the mass, spine, and aorta.    Thankyou

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KellieSue's picture
Replies 10
Last reply 6/11/2011 - 9:53am

Hi all!

Doing good on B-raf. Latest scans show stable disease. I'll take it! Feeling good with minimal side effects! Have been busy lately. Gone to NYC to visit my sisters, went to Vegas earlier in the year with friends. Now getting ready to enjoy the summer with the kiddo's.

Today was my 3 year anniversary of  progressing to Stage IV! It's been a busy 3 years of surgeries and reoccurances and just some shitty times but I feel very grateful to be doing so well now! I can't thank everyone enough on here! You've all really saved me from going crazy many times!

Kellie(from Iowa) Stage IV on B-raf

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Lisa13's picture
Replies 7
Last reply 6/11/2011 - 8:01am

Now that I've been diagnosed with Stage 4 (tiny lung mets - largest one measuring 11mm) I'm starting to wonder if our approach here is aggressive enough. My onc. has suggested decarbazine or the IL-21 trial versus decarbazine. If neither of these work, then Yervoy.  That being said, is this agressive enough considering it's still small and contained?  It seems in the U.S., they pump you full of IL-2 and biochemotherapy which seems to knock the cancer out and keep alot of people cancer free or stable for years.  We don't offer these cocktails here for whatever reason. Perhaps it's required to do a first line of treatment here in Canada (chemo) which does work on some people. Keep in mind, I've had no treatment since being diagnosed Stage 3 in January. Also keep in mind that I had a very deep tumour.  I'm starting to think that I may need to be agressive at this stage and leave my family for treatment in the U.S. (I'm in Toronto). Thoughts???

Lisa

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

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MichaelFL's picture
Replies 5
Last reply 6/11/2011 - 7:04am

Good afternoon everyone.

I would like to point out that IL-2 and IL-21 are not the same. Interleukin-21 is a protein that in humans is encoded by the IL21 gene and is a experimental drug which is currently in clinical trials.

IL-21 was approved for clinical trials in metastatic melanoma and renal cell carcinoma patients. It was shown to be safe for administration with flu-like symptoms as side effects. Dose-limiting toxicities included low lymphocyte, neutrophil, and thrombocyte count as well as hepatotoxicity. According to the Response Evaluation Criteria in Solid Tumors (RECIST) response scale, 2 out of 47 MM patients and 4 out of 19 RCC patients showed complete and partial responses, respectively. In addition, there was an increase of peforin, granzyme B, IFN-Y, and CXCR3 mRNA in peripheral NK cells and CD8+ T-cells. This suggested that IL-21 enhances the CD8+ effector functions thus leading to anti-tumor response. IL-21 proceeded to Phase 2 clinical trials where it was administered alone or coupled with drugs as sorafinib and rituximab.

Here is the trial:

http://clinicaltrials.gov/ct2/show/NCT01152788?term=il-21+melanoma&recr=Open&rank=1

There is also a phase II trial, but it is not recruiting patients at this time.

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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dian in spokane's picture
Replies 26
Last reply 6/11/2011 - 6:41am

Nothing makes me angrier than when I hear someone say that their doctors told them they have just a few months to live. Even if things are grim, there's no predicting death! Over the years here, I've seen so many miracles happen that it almost makes me believe in God.

But when asked for advice from the newly diagnosed....it's the same advice I want to give. Get your shit together.

Sometimes, I scare people off, saying things so bluntly. We all only have ONE day to live. today. this one, all of us, not just cancer patients, and all of us should be ready for death...as ready as we can be.

It's a hard place to find oneself, because as patients, and as caregivers, we want to have the MOST positive attitude ever. And it's hard to keep that great attitude while actively planning for your death. People think that they need to banish any thought of death in order to ...I don't know...send ONLY the positive into the universe. Like if they even THINK that death might be imminent, that will influence the cosmos and send death streaking toward them. But.. it's not magic. A positive attitude will help you, in all regards, but if you take an hour off to see a lawyer and write your will, it's not going to break the magic-positive-web you have built. And..if you do it, then you can stop thinking about it! And no matter how positive you are..you ARE thinking about it sometimes. Maybe it's even keeping you awake at night. 

Realistically, we all should have done this way before we got this crappy diagnosis. Hardly anyone thinks of writing a will when they are 25 and can't imagine death. BUT..we should. it's just a damn legal thing, and we should have it done.

So..if you are a patient, do your spouse a favor, and just bite the damn bullet and plan your death! No matter how it might seem like it, it is NOT like you are accepting that death is around the corner, it's just doing what's right. Because guess what, every time you go under general anesthetic you could die. any of us. Not to mention the more serious risks involved in almost every treatment out there.So..even if you are 19 yrs old, if you are a patient, put your affairs in order. Let people know what you want to have happen after you die. Or at the very least....make a will. Don't let superstition stop you. And don't make your spouse have to bring it up. And for God's sake, don't leave them fumbling, after your death, soaked in grief, trying to figure you out how to get into your bank account.

And..while you are at it, make sure that spouse of yours makes a will too. Because here's something else you might not think of. YOU might not be the one to die first! Remember that 'we only have one day' that goes for your healthy spouse too. And the last thing you need as a patient is to be in the middle of some ghastly months long treatment and suddenly need to plan the funeral of your wife.

Making these plans is not an admission of defeat. Making these plans will NOT hurry death along. Making these plans will just make things easier for you in the long run, and give you the chance to face all of the challenges you have without having this worry in the back of your mind about what will happen if the worst does come true.

Sometimes I also talk to caregivers, instead of patients. Sometimes that's a wife, who's spent most of her adult life raising toddlers and who suddenly finds herself with a critically ill husband, an uncertain future, and a world of fear.

Slap me, but here's what I want to tell them: Get a job.

True, it's hard to hold down a job when you already have 3 kids to raise and now a sick husband that needs your help. But if things go bad, that husband is going to be in recovery from some treatment and/or surgery. Even if he's lucky enough to pull through and recover and do GREAT and you have a long and happy life, there's going to be a time when he's not able to earn money.So on top of all the fear, pain and horror of melanoma, you are going to have short income. Worst case, you'll lose your insurance and things will go from bad to wretched.

So if it's possible, get a job. or go back to school. Find a way to think, in your mind, what you will do if you are suddenly a single parent. plan for your future. take charge.

I also talk to a lot of caregivers who are the primary earner....so I'm not suggesting that getting a job will solve everything, or even anything. You caregivers with full time jobs know how hard it is. You still have to find time to be with your spouse, organize care, deal with doctors...hell..sometimes QUITTING your job is what you want to do.

I'm in that camp that feels like it is harder to be a caregiver than a patient, so you all have my deepest empathy. Some of you are out there spending ALL of your time thinking of your spouse. But you have to think of yourself too, and what the future holds for you. So spend a little time doing that.

Visualize growing old and happy together. But spend a little time planning out the alternatives too.

dian in spokane

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Hi All

I have a question - something that Traci Lee posted about the other day and it has had me wondering ever since.

I posted a reply to MichealFL in her post but it probably got lost in all of threads.

Traci was talking about nodes getting worse on IPI and Micheal said something about them getting worse before they get better.   Next paragraph is the question I posted.:

Micheal you just said something that I have often wondered about.    I was on ipi and a month after I started had a new met. I was Stage 3 adjuvent care when I did the IPI.  My question has always been - How do they know the ip wasn't working?  I have never gotten a satisfactory answer to that, especially when they told me that the met was probabaly already there when I started IPI but to small to be seen on the CT scan.    The other thing you just said was "don't get the flu or a sinus infection" - I did get sick during that time frame - all of the glands in my neck where swollen, and I have never in my entire life, even when I was a kid, had swollen glands. I remember thinking while I was sick I hope this isn't a sign of something worse to come.  What if anything does that have to do with it? 

Anyway just something I have been thinking about - I am past IPI and on to BRAF/MEK now but it is always stuck in my head.    If anyone wants to chime in I'd appreciate it.

Hugs and Smiles

Dawn

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

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Damien Fairbanks's picture
Replies 9
Last reply 6/11/2011 - 4:17am

I dont know whether anyone will remember my sister Simone Fairbanks, she wrote on this board occasionally, Simone passed away on the 23rd May after a very brave fight.She was 35.

Simone was using the trial drug;Plx. It was working extremely well for 4 months with  a 70% reduction of tumors until the cancer came back suddenly. Simone was courageous until the cancer had taken contol. As a brother this journey with Simone has been horrible but also beautiful as i got to know my sister better then i have ever known her. Our whole family was with Simone when she died.We are so sad but we know now that the pain and suffering is over for her.I just thought that she would want me to leave this message to let everyone know that your support with replies really helped her knowing that it wasnt just her fighting this terrible disease. We will never forget Simone..

 

Damien Fairbanks.Loving brother and carer

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Joan C's picture
Replies 18
Last reply 6/10/2011 - 10:13pm

This has probably been posted before, but I just saw it.  A very very good video warning teens of melanoma, check it out:

 

http://www.thatvideosite.com/video/dear_16yearold_me

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TracyLee's picture
Replies 2
Last reply 6/10/2011 - 9:33pm
Replies by: Vermont_Donna, nicoli

Hi y'all,

Second Ipi dose on Thursday.

Wondering from those who've already done the entire 4 doses of Ipi, IF you had side effects....when did they begin? I understand we are all individuals, may react differently, etc etc. I'm just trying to figure out if I should take off Friday, or was it a slow/gradual with symptoms, or did they begin very suddenly?

Time to posse up! :)

TracyLee

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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NYKaren's picture
Replies 6
Last reply 6/10/2011 - 7:15pm

Hi everyone,

As I've mentioned, I'm on Yervoy, 2nd infusion scheduled for June 16th.  Starting last Friday, I started having diarrhea, but it was usually controlled with Imodium, and I thought it was too early for side effects.

On Wednesday, it was really bad, so I called Dr. Wolchuk.  He immediately put me on Entocort EC, a steroid that works in the gut.  Immediately after taking it, I felt better.  I called Dr. W. to report in today, and he said to stay on it and report back Monday.  I still have a small amount of discomfort in the abdominal area, but that's about it.  He also said that if I have to remain on the Entocort, I can still have my next infusion.  WHEW, I was really worried about that.

Apparently, diarrhea is one side effect that can start early and one that they need to monitor closely.  (I guess they have to monitor them all closely.)

Just thought I'd share my experience in case it helps someone else.

Take care,

Karen

Don't Stop Believing

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guyrossi's picture
Replies 1
Last reply 6/10/2011 - 5:48pm
Replies by: Sherron

Yesterday I found out that the mole on my back was a malignant melanoma.  I knew nothing about this disease until I spent the last 5 hours reading and researching.  Based on the pathology report the doctor told me that it is very unlikely that the cancer has spread.  However,  he wants me to come back on July 11th to take some more flesh from the orginal site of the mole. 

Does this sound like the prudent thing to do? Or should more be done?  I did mention to him that I have been achey and tired and have notices some soreness under my arms and inside my legs.  After what I have read today it sound like this could be more serious. 

Any feedback would be appreciated.

"I can do all things through Christ who Strengthens me."

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Rocco's picture
Replies 11
Last reply 6/10/2011 - 1:55pm

Scan results yesterday.  CT of chest/adb/pelvis and brain MRI both clean!  Scanxiety was pretty bad this time around, so greatly appreciated everyone's kind thoughts, good vibes and prayers.   Will be scanned again late August. 

Was told in order to stay on the Compassionate Use Trial protocol (10MG/KG) that I would need to stay on the 3 month scan schedule.  So in case I had reoccurance I would get the10MG instead of the 3MG dose.  Need to confirm with my Onc on this, as I saw a newbie (to me) Dr. yesterday.... need to weigh pros and cons of this approach.

Also asked to resign my trial paperwork as they added 2 more "rare" potential side effects for ipi/Yervoy - since I last resigned in March!   Reviewing now and will post what those new side effects are under separate posting in case folks are interested. 

Rocco - IV since  2005, THX2MDX / Ipi

Luke 1:37

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Sherron's picture
Replies 12
Last reply 6/10/2011 - 1:26pm

My computer is down at home, so cannot get into facebook....Just worrying about Eric & Jill.

Take Care,

Sherron, wife to Jim FOREVER

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