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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Melanoma Mom's picture
Replies 12
Last reply 3/17/2011 - 4:12pm

"Unremarkable PET CT examination from vertex to the skull through the lower extremities. No malignancy detected."

Oh yeah, we're doin' the cancer-free happy dance! The PET scan for our son was clear and while we are still waiting for the CT results, I am going with the assumption that it will be more great news.  Bloodwork is also perfect and hardly shows any effects from the continued Interferon therapy. Next up: routine check-up at Dana-Farber in April, as we haven't been there since December.

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Wendi Lynn's picture
Replies 11
Last reply 3/17/2011 - 3:51pm

Hi All!

Anyone else out there sick of answering the question "how do you feel" or some version of that??  I love that these people care enough to ask, but I'm tired of answering.  On top of which, when I tell someone how I really feel they have nothing to say or couldn't even begin to know what hell this is.  Even with my husband....he will ask me throughout the day how I'm feeling and I just say fine, because I don't want to sound like a complainer. 

My other gripe is I have done everything I can to pretend that I'm fine around my family when I'd really rather stay in bed and sleep all day or even take a leave of absence from work just to not have to do anything for awhile.  (I'm on month 3 of LD Interferon).  But I fear that my husband, who is so accustomed to us being on the go all the time, would think that I'm giving up - which I would never do.  This, of course, is my fault because I have been holding up the last 4 months just "fine". 

I think that's why I love this place so much.  I can read about how others are feeling, what they are experiencing and learn about what I'm feeling or experiencing.  So, for that, thank you!  Although I may not post often, I check the board daily and feel as though I know some of you.  I cry with you and happy dance with you and bite my nails during anxious moments with you.  And I know that you can relate to what I'm saying, sadly enough, but thats why I consider this place so special. 

Thanks for listening!  Keep on fighting!

Wendi

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As the FDA comes closer to reaching a decision on the investigational drug, Ipilimumab (will be called Yervoy), the MRF will likely receive requests from newspaper or television reporters to speak with patients who have either been on the treatment or whose treatment decisions might be affected by the FDA’s decision.  If you have taken this drug or may consider this treatment if it comes to market, and you are willing to share your story, please take a moment to fill out the following survey: http://www.surveymonkey.com/s/DRLM2K3

Your participation in this survey will help our PR firm find patients who are willing to assist them as they begin media outreach efforts in advance of the FDA’s decision on Yervoy. 

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himynameiskevin's picture
Replies 13
Last reply 3/17/2011 - 10:34am

Well' I'm here again for my monthly scans. Flew in last night. I've got about an hour before my brain MRI and CTscan, so thought I'd come up to the library and say hello. Not much new to update on. Still just working a bit, staying busy and enjoying the free time. Still optimistic... but a little anxious about these results, we'll see what they reveal. I talk to the doctors tomorrow and hopefully fly home soon after that. If I get some good news, I'll let you all know soon as I can. I hope everyone is doing ok. I'll talk to you soon.

(fingers crossed)
-Kevin

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Ali's picture
Replies 2
Last reply 3/17/2011 - 6:17am
Replies by: FormerCaregiver, KatyWI

I was stage IIIb 4 years ago.  Did 9 months of interferon.  I had one in transit met removed from my leg and they found another in my thigh during a PET scan.  Biopsy confirmed melanoma.  ILI and ILP have been ruled out as possibilites because the tumor is too high up in the thigh.  I have seen many Dr.s, and the surgeons here are recommending the OncoVex trial.  I am a little worried about getting the GM-CSF arm.  Any thoughts on that?  It seems like from what I read some people have the tumor taken out and then get the GM-CSF injections, but is it normal too to take them with a tumor that has not been excised? 

I am 32 with three kids, my treatment goal is a cure. I would do whatever it takes.

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steelergirl's picture
Replies 3
Last reply 3/16/2011 - 10:39pm

I had a PET/Ct scan on Monday, March 7.  Nodules in my left lung popped up on the PET scan.  I have to have lymph nodes removed from under my left arm.  A biopsy will be done.  I will know more after i see the surgeon on the 25th of this month.  I will see my oncologist again after the biopsy.

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LynnLuc's picture
Replies 7
Last reply 3/16/2011 - 10:35pm

March 15...I had my first appointment at 7 AM and the last one at 6:45 PM and left Moffitt at 730 PM...arrived back home at 10 PM...it was a very long day of fast food, apheresis, scans and such!

I didn’t get to see my doc today but I am sure he will contact me with the scan results in the next day or two...he is awesome like that! I usually always get the scan results on the same day...but considering how late everything ran I couldn’t expect it yesterday.

March 16...dragging my butt to work...I still don’t have the energy or concentration I used to have so it is difficult to get myself back in gear.

 I am anxiously waiting on my scan results...really wished I could have seen the doc yesterday...but oh well...It was my choice to have all the appointments on one day so I wouldn’t miss so much work. And Dr Weber doesn’t do clinic on Tuesdays…

 Yes!! Got an e-mail from my favorite oncologist….

 "Mrs. L; MRI negative, the CTs were stable and show no obvious evidence of disease. Congrats! See you in 12 weeks. Jeff W. "

Speechless!..What can I say?? March 26 will be one year NED.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Replies by: Rydell

This is a good article on Ipi

http://www.internalmedicinenews.com/news/oncology-hematology/single-arti...

An excerpt from the article:

 

When chemotherapy works in advanced melanoma, it works quickly: A scan obtained after 6-8 weeks of therapy will show stability or shrinkage. That sort of response can also be seen with ipilimumab – but in addition, two novel patterns of response have been observed. One involves an initial increase in total tumor volume at the beginning of therapy, followed by delayed onset of stabilization or shrinkage.

Even more strikingly, some patients develop entirely new sites of metastatic disease when ipilimumab is started, with stabilization or shrinkage of both the new lesions and the baseline lesions coming several months later, according to Dr. Carvajal.

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

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FormerCaregiver's picture
Replies 8
Last reply 3/16/2011 - 8:26pm

Could it be that long-term stage IV survivors have something in common? I
think that it would be interesting to see how many have had GM-CSF
(Leukine) at any time.

From what I have read, Leukine tends to change the nature of melanoma in
some patients. One study has found that "... the recurrence is changed, in
that they are solitary, and allow for surgical excision".

It would be great to get some opinions on this. So what do you think?

Frank
(PS: NED means no evidence of disease).

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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MaryD's picture
Replies 18
Last reply 3/16/2011 - 8:21pm

I feel very fortunate to say that my latest CT scan was still clear - 2 1/2 years after the last reucrrence.   In January, it was my 10 year anniversary since the start of my journey with melanoma.   Since that time I've had 5 recurrences including the lung met in 2007 when I joined the Stage IV club.

Treatments have included 1 year of interferon, vaccine trial, radiation on the arm, Ipi, and in 2009, a 6 month course of pulsed IL-2. 

I have been very blessed to not only live with this disease with a decent quality of life, but also to have met amazing patients and health care professionals  who have touched my life.

I volunteer at a local Children's Hospital and for the past year I have have been visiting a little 2 year old girl with neuroblastoma.   She has been hospitalized for 2 years, been through everything imaginable , and yet perseveres every day.   She is a daily reminder of how precious life is and what it means to fight for it.

Know that there is hope!

Best wishes to all ..

Mary

 

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I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

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Well' I'm here again for my monthly scans. Flew in last night. I've got about an hour before my brain MRI and CTscan, so thought I'd come up to the library and say hello. Not much new to update on. Still just working a bit, staying busy and enjoying the free time. Still optimistic... but a little anxious about these results, we'll see what they reveal. I talk to the doctors tomorrow and hopefully fly home soon after that. If I get some good news, I'll let you all know soon as I can. I hope everyone is doing ok. I'll talk to you soon.

(fingers crossed)
-Kevin

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LynnLuc's picture
Replies 1
Last reply 3/16/2011 - 11:46am
Replies by: KellieSue

Well I had my latest scans on Friday...The news was not good. There is a new mass on my right lung that is pressing on my trachea. This causes me much pain, shortness of breath and coughing.

I was on a Braf-Mek inhibitor clinical trial, however, I was having terrible side effects, mainly daily fevers. I was immediately taken off this trial Friday. Then given 2 blood transfusions since my hemoglobin continues to be very low.

Now we have 2 options....We wait 28 days to start Ipiluminab "Ipi" or if the pain increase they may have to radiate the tumor sooner.
The other option, if approved, is much more complex. Tomorrow the doctors will meet to discuss my developments and see if surgery is at all possible. If so, they will harvest some of the tumor and make an injection and give it to me along with IL-2 and chemo. This will definitely be the tougher route. 

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mom3girlsFL's picture
Replies 2
Last reply 3/16/2011 - 10:15am
Replies by: Lisa13, RMcLegal

Does the amout of nodes involved affect the progression and prognosis?  I've had two groin surgeries - 1st 9/11 nodes were melanoma and 2nd 4/5 were melanoma.  I had a clear PET in nov 2010 after discovering the recurrence in september (PET) while on interferon.  Guess I'm just working myself into a frenzy before my oncology appt on Monday and knowing another scan is around the corner!

Thanks for your help. Laurie

Do not fear tomorrow, God is already there.

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