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 9
Last reply 6/10/2011 - 11:22am

Hi, Derek and I are at the hospital getting his blood, ECG, etc completed for the extended use ipi trial in Toronto at PMH.  He has his first injection on Friday. 

We talked with the nurse today and she confirmed that once he starts ipi he will NOT be rescanned until he is competely finished with the 4 treatments. 

That is 3 months away, I am really concerned about this - it seems to me many of you have had scans before the trt is finished and some people have even been taken off the trial because of new mets developing during treatment.  Any comments.

 

Thank-you 

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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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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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Lisa13's picture
Replies 18
Last reply 6/9/2011 - 1:10pm

Well, the results today wern't good news - the nodules in my lungs are melanoma. That being said, my onc. was very optimistic and never for a moment made me feel like I was doomed. I have low bulk disease in my lungs which is growing slowly. I'm going to go into the IL-21 trial versus decarbazine as this is my first line of treatment. Of course if this doesn't work, we are going straight into ipi.  I was so happy he didn't make me feel like I had months to live as he said that stats were old and that there were so many new drugs for melanoma that were prolonging people's lives.  I have no choice other to be positive and focused and pray that one of these treatments will get rid of these nodules.

I would love to hear of other people's stories who've had numerous lung nodules. I must believe that these can shrink and disappear and I know it's been possible for many people.

Lisa

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

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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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Hi All,

Interesting reading in TIME magazine.  Dr Oz on cover talking about his scare with colon cancer and how he was a "lousy patient" - not following instructions pre-test, cancel/resched follow up tests, anxiety over results, telling family and friends...Although it was not mel, still touched on what we go through and put a sense of "normalcy" to us as patients with our fears.

Also in this issue was a brief commentary on one man's journey through "Scanxiety".  Pretty cool how he describes his experience.

 It is available online.  www.time.com

Have a great day!

Laurie

Do not fear tomorrow, God is already there.

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Rendergirl's picture
Replies 17
Last reply 6/12/2011 - 9:31am

When I was first diagnosed a few months ago, my mom and sister didn't want me coming onto this site because they thought I was just scaring myself with other people's horror stories. I fought them on it and continued coming because I can't fight unless I have info, and I got info and more from all of you. I wouldn't have gotten through my past three surgeries withoutt the people here. BUT.... a little part of what they were afraid of was true. Most days are good since I am NED now after my 3rd surgery, but I do have a tumor behind my knee and I have my 4th surgery on that in a few weeks and the chance it might be cancer is scaring me. But like I said, most days are fine. Then there are those days that I read about person after person who's journals I follow are in ICU or in the hospital and not doing good. And someone else posts a tribute video on YouTube... it just hits me like a hammber blow.

How do you keep from freaking out when it seems all the fighting and the tears and the pain is for nothing? When you feel like no matter what happens, this might really kill you? How do you stop from scaring yourself? How do you stop your heart from breaking over everyone else's battles?

Just having a bad day I guess. Honestly, I know I should be so happy, I'm NED. There are so many that are SO worse off. Maybe I'm just too empathic... It just doesn't seem fair. I hate melanoma. No one deserves this.

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ShariC's picture
Replies 17
Last reply 6/8/2011 - 6:06pm

Sorry I've been out.  Remember I had the distended stomach....its Mel.  All over.  "too numerous to count".  Doctor Gonzoles at UCCC said he needed to get the tumor growth under control before Yervoy so he had me do a round of DTIC and Vinplastine and Cistabline.  Did that over the weekend.  Its been a real strange trip.  Honestly at more peace than I thought I would be.  I'm preparing for the worse, my doc is trying everything he can to extend.  He said he's seen worse?!  I don't see how. 

Sorry for such a post...but, I wanted to let you know.  I'll try to update occassionally...hopefully the chemo beats it back a bit and I can get some comfort.  But, it manifested quickly...very quickly...my body just couldn't handle the tumor load its probably had for months..and it just reached a threshold.  Strange.  Strange indeed.  - Love you all - Shari

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/8/2011 - 11:53am
Replies by: Anonymous, Carol Taylor

Hi Carol,

 

I visit MPIP daily and read your posts. I so appreciate your prayers. You give everyone comfort.  I rarely post but I feel compelled to ask for your prayers.

I am having surgery on Thursday & very scared. This is my 3rd surgery in 3 years. I pray that God will guide my surgeons hand & there will be no complications, as well as, obtaining clear margins.

Carol, any prayer you can say for me will be sincerely appreciated.

Thank you for praying for all of us.

Tiffany

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EmilyandMike's picture
Replies 2
Last reply 6/14/2011 - 12:16pm
Replies by: Lauri England, MariaH

 

We have seen all of the “news” about the "new" melanoma drugs at the ASCO conference (not really new news to most of us).  You can see a full list of the melanoma abstracts here: http://abstract.asco.org/CatAbstView_102_121_AA.html

There were a few abstracts about interferon that covered the debate for Stage 3 patients (1 year vs 1 month, 1 month vs observation, long term PegIFN vs observation) and you might be interested to read them... although I am not sure that it clarifies much:

http://abstract.asco.org/AbstView_102_83141.html

EORTC 18991 phase III trial: Long-term adjuvant pegylated interferon-α2b (PEG-IFN) versus observation in resected stage III melanoma: Long-term results at 7.6-years follow-up.

Conclusions:Long-term PEG-IFN therapy in stage III melanoma had a significant and sustained impact on RFS (recurrence free survival), but not on DMFS (distant met free survival) and OS (overall survival). Patients with only microscopic nodal involvement (sentinel node positive) seemed to have a greater benefit of PEG-IFN in terms of RFS, and marginally regarding DMFS and OS. In the smaller subgroup of pts with sentinel node positive and with ulcerated melanoma, the benefit seemed to be the most striking and consistent regarding all endpoints, and was maintained at long term follow-up. These effects have been observed in 2 consecutive EORTC trials (18952 and 18991) involving 2,644 patients.

http://abstract.asco.org/AbstView_102_77947.html

Randomized phase III trial of high-dose interferon alfa-2b (HDI) for 4 weeks induction only in patients with intermediate- and high-risk melanoma (Intergroup trial E 1697)

Conclusions: Adjuvant HDI induction with only 4 weeks therapy neither improved RFS nor OS over observation for patients with intermediate and high-risk melanoma. This trial supports the importance of HDI treatment duration and argues that the approved 1 year Interferon regimen of induction followed by maintenance remains the standard of care for pts with T4N0 or node positive disease.

http://abstract.asco.org/AbstView_102_79446.html

A randomized phase II trial of 1 month versus 1 year of adjuvant high-dose interferon alfa-2b in high-risk acral melanoma patients.
Conclusions: The preliminary results of this study demonstrated no statistically significance were detected in RFS between the 4 weeks and 1 year regimen for all the high-risk population, while a 1-year regimen showed a significant clinical benefit in patients with stage IIIb-IIIc Acral Melanoma or nodal metastases ≥3. Further survival data are needed for long-term follow-up.

http://abstract.asco.org/AbstView_102_80361.html

Intensified high-dose intravenous interferon alpha 2b (IFNa2b) for adjuvant treatment of stage III melanoma: A randomized phase III Italian Melanoma Intergroup (IMI) trial

Conclusions: Our data show that a shorter but more intensive HDI regimen is more feasible and not more toxic than conventional HDI.

http://abstract.asco.org/AbstView_102_80167.html

Health-related quality of life (HRQOL) in the Nordic randomized trial of adjuvant intermediate-dose interferon alfa-2b in high-risk melanoma.
Conclusions: The results of this study revealed significant effects of IFN alfa-2b treatment on HRQOL. The impact on HRQOL is important to consider as part of the decision process on whether or not to use adjuvant Interferon.

Our experience with melanoma: http://emandmichael.wordpress.com/

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Lisa13's picture
Replies 12
Last reply 6/8/2011 - 7:45am

Yesterday I had the follow-up scan to a previous one I had on April 28th.  I'll be finding out what's going on with the nodules on my lungs as well as any other areas in my body. My CT scan was nervewracking considering just before they pumped me full of iodine, they told me they're taking a good look at my liver!  At that moment, I could feel the anxiety flowing through my veins as quickly as the iodine. Thanks buddy for putting that image in my head!

I've had a really bad stomach these past couple of weeks and my acid reflux and hiatal hernia have kicked in big time. Sometimes my hiatal hernia gives me some breathing problems which of course makes me think of this melanoma growing rapidly in my lungs in the past month. I really hope to God that this is a scare or they tell me there is no change and even better, nothing anywhere else. I don't even know if I'm mentally prepared to hear the words (stage 4) yet and they probably wouldn't either until these nodules got big enough to biopsy. I keep trying to remind myself that my blood work 2 weeks ago was normal, so that has to be a good thing.  I also keep reading peoples stories of their scares and lung nodules being nothing or not growing, etc, etc, but then you come on here and there's terrible news which freaks me out even more.

I've had a few break downs today. I look out the window on this beautiful, sunny, hot day reminded of how much I loved these days. But now, I feel I can't even enjoy the summer with my daughter because I'm petrified of being in the sun because it's the reason I'm here. I hate what is happening and I'm so angry that I'm going through this (even though I'm not alone). I want to know my results so badly, but at the same time, I'm terrified.

I will definately need some wine tonite and probably an ativan before my appointment bright and early.

P.S.  I'm so thankful that all these drugs are becoming available and likely a dozen more to follow. 

Lisa

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

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Steve in Detroit's picture
Replies 3
Last reply 6/7/2011 - 9:01pm

My ex wife has stage IV mel and was recently put on PLX 4032. The joint pain associated with taking the drug after a few days was difficult to tolerate even with lower doses. Has anyone else experienced this side effect?  If so, how did you manage the pain and was it long lasting? Any feedback would be much appreciated. Thank you! 

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mom3girlsFL's picture
Replies 14
Last reply 12/1/2011 - 8:34pm

Good Morning,

Had 3mth onc appt yesterday.  Expecting to sched PET scan as we discussed doing every 6mths, last PET was Nov 2010 (clear).  Onc says insurance will not pay for PET unless disease evident (?) and had clear CT of chest, abdomen and pelvis in april 2011.  Long story short - positive node removed last year.  PET showed more. More nodes removed, several w/mel.  Went on interferon after additional node removal.  PET after showed new node.  Had "radical" node removal, several nodes again w/mel.  Off interferon, PET in November 2010 clear, CT chest, abdomen, pelvis clear in April 2011.

Come home and discuss w/hubby.  All is well...until this morning.  Hub wakes me up at 6am says he's been up since 11pm thinking about all this. " Is insurance the only reason not doing PET?  Let's see if we can get one ourselves...Don't you understand what the PET does? I know you had CT, but what about your brain?..." and on, and on, and on...

Please, please don't be mad at hubby.  After I settled with his bombardment I truly understand he is coming from a place of love (although he had an odd way of showing it sometimes).  I told him to call the onc.  Don't know what else to say.  We all deal w/our battles each morning when we decide to think about it all day or go on with the beautiful gift of another day we have.

I hope I am not being ignorant and just assuming if the onc is okay, then I am okay.  On a side bar - this is not my original onc it is a 2nd opinion onc after the 1st onc didn't know what to do after my very first node "lit up" on a PET - at the persistence of my hubby we went to the 2nd onc for our treatment plan.  Basically, my hubby "saved my life" so I do value his opinion.

Thanks for your input.  Hope I didn't get too confusing for you.

Laurie

Do not fear tomorrow, God is already there.

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Hi everyone. Last week I posted that I had been for my routine checkup at a Skin clinic that has been monitoring me for some 6 years.  The GP found two suspicious moles but he said that he would wait and monitor them and see me again in 3 months and if there had been any changes.

I have been Stage IIIB/C? since 2001 wherein I had a superficial spreading melanoma in situ on my right leg.  There was no regression and the tests were done twice.  Nine months later they found melanoma with a moderate mitotic rate in one of my lymph nodes in my right groin with extracapsulary spread.  They say that a thin melanoma shouldn't spread but it is a bit too coincidental given the area.   I  had radiation treatment for four weeks.  5 years later, this skin clinic GP found a Level 4 Desmoplastic melanoma on my left arm which is a rare type and low mitotic rate and tends to recur in the same spot and not often in the lymph nodes.  He referred me onto the PA Hospital in Brisbane which surgically removed a large chunk out of my arm followed by radiation treament.    At a routine visit to the Princess Alexandra Hospital in Brisbane last week I mentioned the two moles that the GP had found.  Anyway the Registrar called in the top boss and he suggested that my GP remove it at the clinic immediately.  My test results came back today and the mole that was removed on my upper back turned out to be a Level 1 superficial spreading melanoma.   I am so grateful that I told the hospital doctors about these moles.

I have a routine appointment with the hospital at the end of the week and the GP is wanting to do further surgery himself to get better margins on the same day.  I know that it is a very thin melanoma but after my experience 11 years ago with a similar melanoma I am extremely anxious and would prefer to have the hospital take over my care and have at least some chest xrays and also  I wish I could have a sentinal node biopsy to check my lymph nodes.  I don't want to have again the wait and see attitude and lose another lymph node basin after suffering lymphoedema in my right leg with the removal of the nodes in my groin and many infections.

I would appreciate any thoughts that anyone may have.  I know this is a thin melanoma but given my history, I am feeling a little concerned about my care.

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