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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Anonymous's picture
Replies 1
Last reply 3/18/2011 - 10:15pm
Replies by: LynnLuc

Anyone else concerned that insurance companies might balk at approving the cost of ipi/Yervoy treatments (off trial)  if/when FDA moves forward for approval of it? 

Has anyone had experience continuing with a drug going from trial to mainstream and dealing with insurance approvals, etc? 

Just curious..

Luke 1:37

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gabsound's picture
Replies 2
Last reply 3/18/2011 - 9:43pm
Replies by: LynnLuc, lhaley

The results came back on my PET scan:

"There are extensive changes seen within the right groin and medial right thigh. Single area of increased hypermetabolic activity within the inferior portion of the right thigh incision where there is some thickening seen on the CT. The SUV is as high as 2.0. Suggest direct visualization and possible repeat biopsy and excision is suggested. There is low grade probable post surgcal activity within the right groin with no definite hypermetabolic lesions. The remainder of the PET findings demonstrate no evidence of distant metastatic disease."

My surgeon is the one that gave me the report and he said "that's why I don't do the PET scan this early". He thinks it's all related to the surgery and did not seem worried. I feel relieved, but know of course the scan will need to be repeated later to recheck that area. That part of my leg has been sore, but is less sore now than it was. Tomorrow makes 4 weeks from the date of my WLE and lymph node dissection.

I also saw on a consult report that my Physician friend had that dx is superficial spreading Clark's level IV. Breslows depth 2.35 mm with ulceration present. Regression absent. Lesion now T3bN1M0. Does this make me stage 3b? Assuming PET is really negative?

The PET scan was done 3 weeks post surgery. I still had one of my drains in. That came out yesterday :)  I'm wondering if anyone else had changes in region of surgery and did these resolve?

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Reservoir Dog's picture
Replies 4
Last reply 3/18/2011 - 6:54pm

Hello all!

Patrick here in Dallas making my first post.  I'd like to thank you all for your up-lifting stories of courage and determination.  When I read about what others have gone through & are going through, I came to realize that I am a flipping weenie!!! 

I returned home from the doctor in tears because it appears another Melanoma spot has resurfaced on my face... for the 4th time.  After 3 excessions (maybe a 4th), 10 months of Interferon, coupled w/ radiation on the effected area, my doctor is concerned that it continues to return.   I guess the stories of Blue Nevus melanoma being very agressive... are true! 

My Oncologist said she'd like to put me on Leukine (Sargramostim) in an effort to extend my life.  I'm curious to see if anyone has used Leukine and what the results were???

Thanks in advance and God Bless!

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Replies by: bball, JakeinNY, jag, Carole K

I am 2A, 3.5mm with a high mitosis,and am looking at alternatives does anyone have experiance with IAT in the bahamas, are going to a raw or macrobiotic diet, also looking at Qigong, and ozone /oxygen therapy. Trying to find a path to follow and then enjoy my life. Thanks for any feedback.BBall

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Rydell's picture
Replies 3
Last reply 3/18/2011 - 12:31pm
Replies by: jrami3, KellieSue, lhaley

I am fairly new to this website, I've been viewing posts and replying to some. This website has been so helpful! Thank you all for educating me, comforting me, and giving me hope!

I was diagnosed with Stage 4 Melanoma in January 2011 after a double craniotomy. I have one brain met left and 5 other lesions throughout my body. I received 4 CyberKnife treatments in February and I started Temodar (150mg/day for 6 weeks). I also just found out that I tested positive for the B-RAF mutation. Can anyone tell me their experiences with B-RAF inhibitors?

I met with my neurosurgeon today. The MRI, one month after CyberKnife, shows negative uptake in the areas where my two brain tumors were removed and the tumor that couldn't be removed is stable not growing! I have two more weeks of Temodar then another PET scan to see if that is working. Dr. Carvajal from MSK will tell us what the next step will be in this fight! He's a big advocate of Ipi. Can anyone tell me their experiences with that?

I can't express how helpful this place has been for me, I was scared and searching for someone to talk to that could actually relate. Thank you and I wish all the best to all of you that are battling this beast!

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Simmy from Oz -Melbourne's picture
Replies 6
Last reply 3/17/2011 - 11:20pm

Hi my fellow MPIPers!

I have been on PLX4032 (BRAF) for 7 weeks, and so far fabulous news!!  Im rapt and couldnt have asked for better results :-)  My brain tumour has disappeared... YAY!  And all of my tumours (liver, lungs, skin, everywhere basically) have all shrunk by an average of 70 - 80%  Although I am feeling great emotionally and mentally, I am suffering from the side effects pretty badly.   My entire body has been covered in this rash since week 2, but it is especially bad now on my face.  It looks terrible and the itchiness is unbearable!  Does anybody have any advice? or has anyone experienced this?  I also have aches and pains in all my joints, and terrible pains in my calfs and feet (my feet are blistered and painful to even walk on?)  Im not sure what to do, should I be resting to get better, and keeping my feet up,etc, so that I dont push it all too quickly and end up worse?  Or should I be attempting to do some little exercises and perhaps rehab stuff at the swimming pool? 

Also, Ive just spent the past week in hospital for a bit of a 'spruce up'!  I had a blood transfusion, which my doc sent me in for, by while in there they did a  blood test and discovered that

1. my calcium was too high (only by a little bit).  they gave me something thru IV, then lots of water thru there.  What does all this mean? Someone told me that CAlcium % CAncer go together.. Can someone please explain.... 

2. my potassium was low, so they gave me some of that thru IV too.  Anything I should know here?

ALSO...... PLEASE I hope somebody can help me with this BIG BIG problem of mine....... I CANT STOP WETTING MYSELF WHEN IM SLEEPING.  I WEAR 3 NAPPIES TO BED, HAVE SPECIAL WATERPROOF THINGS DOWN ON THE BED, BUT EVERY MORNING I END UP SATURATED AND HAVE TO CHANGE EVERYTHING......This problem is driving me mental.  My partner sleeps separately now, and nothing helps it, like not drinking at night, etc.  Im on methodone and gabapentin, I think these tabs just 'knock' me out so much, that when Im sleeping, Im just too relaxed to wake up?? But the doctors dont think this could be the reason.  Ive been tested and nothing is seriously wrong??? so im just lost and goin mental!!!  PLEASE CAN ANYONE HELP ME ON THIS ONE???    

God bless you all and hope that many of you have also been experiencinng good news and results, with all these new drugs emerging. 

love always, u are all always in my thoughts,

Simmy from Melbourne, Australia. 

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jrami3's picture
Replies 7
Last reply 3/17/2011 - 7:37pm
Replies by: Janner, jrami3, MichaelFL, Rydell, Anonymous

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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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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