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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Rocklove's picture
Replies 16
Last reply 1/24/2011 - 10:29pm

Hi All,

I have been struggling with some pain.. not severe but have been taking 600 mg of Ibuprofen 3 times per day  for the last few months and it has kept the pain at bay. I have refused to take anything from the opium family so far as I am still working a full time job and drive. The Nurse had warned me not to drive if I took stronger prescription drugs.

Is there any medication that is milder on the bodies organs that are effective?

I am also struggling with a high creatinine level that started in Sept @ 3.3 after 6 rounds of bio-chemo but has trended down to 1.7 last week.

I am know in my 2nd dose of ipi.

Any suggestions would be appreciated.

Rocky (Stage IV Liver Mets)

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Amy Busby's picture
Replies 6
Last reply 1/24/2011 - 10:20pm

I have no idea what I should go after for my next line of treatment.  I don't seem to be having a response to the ipi.  I am still on the trial for the 10 weeks off period, but my onc and I agreed that I should be looking at alternatives since I'll probably be booted at that time for greater then 25% progression.  I am in alot of pain from my leg mets.  Going up and up on the meds.  Dennis thinks I really need to address that first since I am in so much pain.  But if I do radiation then it pushes me at least 4 weeks out to do any trials.  The one I'm looking at most strongly is the E7080 drug with temador, but there's only one or two spots left.  I have an appt lined up for next week to start all the papers / tests / etc.

Or I could start radiation on the left leg and possibly have hope of walking again like a normal person (wheelchair and walker bound now).

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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Tim--MRF's picture
Replies 12
Last reply 1/24/2011 - 4:16pm

Roche/Genentech/Plexxikon just announced that their BRAF inhibitor that has been so much in the news hit it's primary endpoints in a Phase III study.  They have gathered enough data to show that the drug provides both Progression-Free Survival (PFS) and Overall Survival (OS). 

The best I can tell, here is what we know about this drug:

--it is applicable only to patients who have BRAF V600 mutation, which is about half of all melanoma patients;

--of the patients who have the mutation, about 60% will respond to the drug (vs. 14% who respond to IL-2, for example); and,

--the average duration of response is about 7 months.

This is a major win for patients, but also demonstrates how much more has to be done in this field.  We need to find ways to extend the duration of response (probably through combining this drug with another drug) and also to find more options for patients who do not have the BRAF mutation.  Several early-stage trials are ongoing that address these two needs.

Here is the press release:  http://www.roche.com/media/media_releases/med-cor-2011-01-19.htm

 

Tim--MRF

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chet's picture
Replies 11
Last reply 1/24/2011 - 3:55pm

So I just got done with my first week of high dose IL-2. It was pretty rough but I managed to pull through. I did 9 bags total and wanted to get to 14 but my doctor said it was getting too toxic. She said it was not so much about the quantity but more so about my immune response. The worst part of the whole week were the rigors. The nurses would give me a shot of demerol right when I was starting to feel it coming on but it made me super nauseous to where I vomited a few times but they gave me a shot of phenergan right after to combat that. The third night was the worst for me. My allergies made it difficult for me to breathe that night so they had to give me oxygen. I don't really remember much from that night but the nurse told me I had a heart rate of 190 that night which was like me running a marathon. I'm at home recouping and I go back in on Feb. 7 for my next cycle. I'm not experiencing rashes like a lot of others but I'm peeling a lot along my ears and on my neck. My lips are super cracked and feel gross. I didn't sleep a wink last night. I heard that the IL-2 causes insomnia. Any truth to that? Anyway, how long until my skin goes back to normal? I don't like feeling crusty lol.

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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MSKCC to Test Agenus' Personalized Cancer Vaccine in Combination With Novel Immunomodulatory Agents

LEXINGTON, Mass., Jan. 24, 2011 (GLOBE NEWSWIRE) -- Agenus Inc. (Nasdaq:AGEN) today announced it has entered into a research agreement with Memorial Sloan-Kettering Cancer Center (MSKCC) using Agenus' proprietary cancer vaccine technology.

The collaboration will test Agenus' cancer vaccine in combination with antibodies that are intended to target specific markers on tumor cells, such as CTLA-4 and PDL-1. This group of antibodies represents a new class of immunotherapeutic agents that are thought to have complementary mechanisms of action with cancer vaccines. The studies will be performed in the laboratory of Jedd D. Wolchok, M.D., Ph.D., a leader in the field of cancer immunotherapy. Dr. Wolchok serves as the Associate Director of the Ludwig Center for Cancer Immunotherapy at MSKCC as well as Director of Immunotherapy Clinical Trials.

"Collaborating with MSKCC and Dr. Wolchok's laboratory opens a new chapter in the development of our personalized cancer vaccine portfolio for targeting later stages of this disease," said Garo Armen, Ph.D., CEO of Agenus. "Partnerships with leading institutions are central to Agenus' strategy to bringing life-changing products for cancer patients to market faster."

Agenus' cancer vaccine is designed to expand and specifically program the army of T-cells responsible for killing tumor cells; however, as cancer grows it becomes smarter and increasingly builds an 'immune fortress' that can protect itself from the attack of T-cells. Therefore, combining a product that activates T-cells with an agent that blocks the signal preventing the T-cells from effectively killing the tumor could have highly potent outcomes.  

"Combination immunotherapy in cancer is increasingly becoming a key focus of research, and this collaboration will add to this important and growing knowledge base," said Dr. Wolchok. "Our interest in Agenus' cancer vaccine is that it contains many antigens that are genetically matched with the cancer as the product is derived from the tumor itself."

"In addition to this preclinical research effort, we are looking forward to opportunities to rapidly initiate clinical trials, combining our Prophage series of cancer vaccines with either marketed or investigational agents that work against T-cell down regulation," said Dr. Armen.

Source:http://www.globenewswire.com/newsroom/news.html?d=211612">Personalized Cancer Vaccine in Combination With Novel Immunomodulatory Agents

Vaccine + Anti-CTLA-4 and or PD-1, PD-L1 equals Immune response

Best regards

Jimmy B

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justzack's picture
Replies 8
Last reply 1/24/2011 - 12:49am

I am new to the board, so excuse my posting ettiquette :0)  I had a 1.55 Melnoma, Clarks IV on my right infamammary (under right breast, chest wall).  WLE and SLNB was performed by Dr. Zaeger at Moffitt in Tampa.  Ongoing health issues - unexplained hypertensive crisis', tachycardia, sever skin flushing, facial swelling, massive headches, multiple admissions and ICU stays, unexplained acute renal failure in april 2010.  Last month, I had a case of pneumonia and xray showed possible lung nodules ot right lung and medastinal shift with enlarged heart, thyroid, and liver.  In prior scans in April, no evidence of what is now showing on scans.  Primary Care doc ordered Thoracic Ct Scan.  Impression results:  3 calcified lung nodules that appear to be granulomatas and 3 non-calcified lung nodules, that are not specific.  Recommendation to follow-up with oncologist due to patient history and possible metastasis.  The non-calcified nodules are very small 2-3 mm.  My chief complaints right now are severe back and chest pain, that gets worse when I lie down.  Minimal coughing that produces no sputum.  Weightloss of 22 lbs this month, but still eating ... big girl so not really worried, but just unsually - was on weight watchers for 18 months recently and couldn't lose more than 15 lbs due to major fluid and swelling of face and stomach.  All of this to say ... we are at a loss, we are fearful the NED Badge will no longer be mine to wear.  I have an appointment on Monday, January 28th with Dr. Zaeger at Moffitt, he has read the report, but not seen the films.  He advised his nurse that he wants to see me soon.  The appointment was scheduled for first available, just a week and a half from the date we notified them ... unheard of at Moffitt ;0), but really welcomed.

So my question to all, does anyone have experience with lung mets, how small or big were they, what were your symptoms, what are treatment options, what are biopsy options, anyone diagnosed with pneumonia - but really melanoma lung metastasis ... I hav so many questions, but so glad to have everyone's guidance.

Peace to all --- Missy

He has taught me to say, it is well, t is well with my soul ...

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I hope this okay to post here.  It is not a question, but an interesting radio show/podcast about melanoma which includes an interview with a mom that has stage 4 melanoma.  http://girltalkwithmarlo.com/metastatic-melanoma-skin-cancer

I know the interviewer via twitter, was happy to see someone taking the time to discuss and bring more attention to the topic.

Best wishes to all ~ Pennie

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Anonymous's picture
Anonymous
Replies 20
Last reply 1/23/2011 - 2:30pm

Hi IPI Warrior

 

I read MPIP posts & some IPI warriors have remain stable & unfortuanately some have progressed. Cannot find any post from IPI warriors in REMISSION and NED?????

IPI has got alot of press at ASCO & in the news getting approved by FDA. I read 1 in 3 respond BUT is the response "remission"???

This might be a stupid question but how good is this drug??? Has any reports indicated this drug has brought IPI users into remission??? or has this drug just prolonged progression??? What exactly does "RESPONSE" to this drug mean to the IPI warrior

It wouuld be interesting if IPI warriors posted their disease status since taking IPI.  I wonder the results of IPI users who have finished treatment. Just a thought?? It would be encouraging for IPI users to see some IPI warriors that are NED after taking IPI.

Hope we see  many posts from IPI warriors that are NED!

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carol b's picture
Replies 7
Last reply 1/23/2011 - 11:33am

my pet scans just showed only the tumors we can see and feel..NO mets anwhere eles in my body. THANK GOD FOR THAT

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Nebr78's picture
Replies 5
Last reply 1/22/2011 - 10:32pm

I haven't been here for awhile. I am now taking strong radiation treatments for nearly golf ball size lumps on side of face and chest near armpit..  I just have 2 more treatments left. I am eating pain pills from the lump on side of face. Real sore.  My second Dr. recommended that I not take radiation, but a cancer nurse encouraged me to go see a radiation Dr.    I am now between a rock and hard place.  I don't know whether I should  ever go back to the second Dr. or not.???  I can't take anymore chemo because of serious heart disease.

I don't know what to do if the lumps don't go away. I was sort of waiting for this Ipilimumab chemo but FDA has put approval off another 3 months.

I really don't think they are in too much of a hurry to find a cure.   Big Business

Has anyone ever had big lumps treated with radiation?    Thanks

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2atlascedars's picture
Replies 1
Last reply 1/22/2011 - 9:10pm
Replies by: Janner

I am finally back on my feet after a three-month ordeal that began with an October 26th diagnosis of MM on the sole of my foot. I just stopped needing to use crutches this week, after having been in a wheelchair for 6 weeks following my WLE on November 19th. I had to have a full-thickness skin graft to reconstruct the WLE site, which required nearly 3 weeks in a hospital and surgical rehab center, followed by countless hours of wound care and physical therapy by home health care providers. Also, I could not drive or work until January 3rd, when I was first permitted to use crutches.

I was VERY fortunate to have my SNB results come back negative, particularly since my MM was 3.7 mm deep. I have read so many post of yours on this site which indicate much shallowed depths of MM that had spread to the lymph or cirulatory systems. Since I had no ulceration, I believe I am stage 2A. I will have my first of many 3-month follow-ups with my Melanoma Specialist in February. I was wondering if anyone can offer their advice on what questions I should ask and what tests I should insist to be performed to ensure that I am, and continue to remain, NED.

I feel as though I should know as much about my primary melanoma as possible, such as the genetic profile, so I can stay abreast of the continued advances in targeted treatments. I know I am not truely cured yet, and want to be as prepared as humanly possible to quickly send my melanoma back to the HOLY F----ING HELL that it came from...if it should come back.

Also, I have heard that 8% of patients who had local-only disease go on to have a recurrance (spreading) of their original primary...is this correct? Are there any stats that break this down to more specific stages? (References are greatly appreciated).

Thanks for your help fellow MM Warriors!

Best regard,
Mark from California

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djpayn's picture
Replies 2
Last reply 1/22/2011 - 10:18am
Replies by: EricNJill, Amy Busby

im hoping that someone can give me advice about using fentanyl patches. i have been using one (100mcg/h) for about 6 months now. in the past few weeks,  i have begun to notice that by the second day of wearing the patch, my pain becomes stronger and i have wierd sensations in my legs - almost like restless legs but not quite as severe. i start taking my breakthrough meds on the second day which helps with the pain, but also relieves the sensations in my legs. i hafta take the pills the second and third day of the the patch, but once i change the patch on the 3rd day, i feel fine again.... for abt 2 days.

dont know if anyone has experienced this before but im hoping someone has some advice. i have been on a wide assortment of pain meds in the past 2.5yrs, and feel the patch works best, but am wondering if this will get worse over time. im not opposed to talking with my pain specilist about a med change, i just really dont want to. the patch has been instrumental in makin my pain and life manageable and feels like im back to my old self.

thanks for any help.

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molly's picture
Replies 2
Last reply 1/22/2011 - 10:07am
Replies by: molly, Anonymous

Does anyone know of a board like this for Prostate Cancer?

Thank you so much,

molly

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KatyWI's picture
Replies 6
Last reply 1/22/2011 - 2:10am
Replies by: kylez, jag, KatyWI, NicOz, MaryBZ, Janner

It looks like the cyberknife I had on my brain in November was successful on 3 spots and not so much on the fourth.  After three doses of Ipi, it's swelled up and "looks" like it's growing (though as we know know with ipi you can't really tell initially!).  The plan is to remove the offending brain met in a week.  I'd really like to hear from some of our craniotomy "experts" (John?  Nic?  How many have you guys had between the two of you - twelve or something!  j/k, but I know it's a lot.)  Can I have some advice?

What should I bring to the hospital for "comfort"?  What should I have prepared at home?  I know the doctors will "tell" me, but how long might I *really* expect to be useless/recovering?  Anything else I should know?

Thanks, I appreciate it.

KatyWI

Just keep going!

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