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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dawn dion's picture
Replies 12
Last reply 5/3/2011 - 7:01pm

So after a very loooong day at Moffitt ( I know I don't have to tell anyone how that goes)  and a day and a half of just flat out to busy to think, I finally have time to sit down and post about my scans on Thursday.   I had my first set of scans since starting the GSK BRAF/MEK trial -  while I am not NED yet :(  there was a 20+% shrinkage :) !   I WILL TAKE IT!   It made me very happy.    Thank you to all of you who posted your thoughts about my scanxiety, said prayers and gave me a patron saint to pray to (Mike :) ) - It helped me tremendously - especially when I was  sitting and waiting for her to come in and discuss the results.  Felt like I was two seconds from a massive heart attack - and she wonders why I have days when I need a anxiety pill.  Just wanted to share the news and again Thanks to everyone. 

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

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/2/2011 - 10:40am
Replies by: premedy, Lori C, EricNJill, FormerCaregiver, Anonymous

Hi Jill,

 

How are you & Eric doing???  You are in my prayers. Hang tough! God willing, it will get better for you both.

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EmilyandMike's picture
Replies 4
Last reply 4/30/2011 - 5:36pm
Replies by: Tim--MRF, mommydog, Napa K

I was just wondering if anyone was attending the May 4 event in San Francisco.  My husband and I will be attending.- I look forward to meeting you if you are.    

http://www.melanoma.org/get-involved/wings-hope-san-francisco

Thanks

Emily

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

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rbruce's picture
Replies 13
Last reply 9/28/2011 - 11:38am

Diagnosed with Melanoma in March.  PET/CT showed tiny tumors in my lungs so now I'm stage 4.  Testing showed that i have the Wild Type mutation NRAS Q61.  Before testing UCSF was talking about the new inhibitors for BRAF that are showing great success, but not for NRAS Q61 mutation.  This week I visited Dr. Steven O'Day at the Angeles Clinic in Los Angeles who suggested Ipilimumab and then Dr. Daud at UCSF the next day who is suggesting Carboplatin and Taxol in conjunction with Axitinib (A UCSF clinical trial).  Any thoughts, experiences, suggestions, ideas would be most welcome as I have to make a decision soon.  Thank you so much!    Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Sherron's picture
Replies 3
Last reply 5/3/2011 - 10:11am
Replies by: Barb, Sherron

I will be walking the Melanoma Walk in memory of  myJim next Saturday, May 7th, 2011 at Bachman Lake in Dallas, Texas.  My daughter-in-law, Krissi, who has superficial spreading melanoma will be walking with me.   This is for Jim, and all of the Melanoma Warriors currently fighting their fight and all the Angels watching us.  Small contributions are welcome... it is under AIM...It might be under my name Sherron Clevenger.  I need to earn $50.00 to walk, or it maybe under Jim Clevenger...not sure about that....just sure that I am doing this!!

Take Care,

Sherron Clevenger, wife to Jim FOREVER

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Anonymous's picture
Anonymous
Replies 13
Last reply 5/4/2011 - 3:06am
May the remainder of her journey be as peaceful and pain free as possible.
 
From her Facebook page 13 hours ago:

Hello everyone. It's Amy's sister, Julie. Quick update...Amy has taken a turn for the worse. The past two days have been pretty rough on her. We want to thank everyone for their continued prayers. Visits are still welcome please just call and schedule with Heather, myself, or Dennis first. We love you all.

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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Napa K's picture
Replies 6
Last reply 5/18/2011 - 3:37am

I visit often, and rarely post but would very much appreciate insight and feedback.  I am (as of later this morning) an 8 year survivor of stage IV melanoma.  Early on I was treated with bio chemo + 2 years of IL2 pulse maintenance and managed to remain disease free until 2009.  Since then I have been waging war against a relapse that has once again reared it's ugly head.  I have had surgeries and did 10 months of PLX and the question is "now what".  My relapse is very localized at this point with one deep lesion, high in my axilla, nearly at my neck level and thus far, my disease has behaved in a fairly slow growing pattern.  The lesion is judged to be resectable but tricky and I recently had surgery in that area. Of course the other obvious option is Ipi. The only hiccup with this is that I have had a tremendously difficult time with every systemic treatment thus far (chemo, IL2, PLX).  If there is a side effect, it seems to manage to find me and in great proportions and the thought of going down this road again scares the ----out of me.  That said, if any of you out there have experiences that were rough with bio chemo/IL2 but have been easier with Ipi, I could REALLY stand to hear from you right now!  I am a mom of two (9/10) that has missed the last two summers and we are all in desperate need of a few months with strong mom back in action and able to participate in a long planned and much needed family  trip.  In my best guess, this will not be the case if Ipi is our choice.  Please share any good Ipi experiences you may have and any other insight. Thanks much and be well!

Hope is the most powerful drug

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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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shellebrownies's picture
Replies 5
Last reply 4/29/2011 - 11:24am

Hey all,

Is it normal to take a month or more to get a proper staging and treatment plan? The waiting and lack of knowledge is driving Don and I insane! He has had the melanoma diagnosis since the 1st and we probably won't have an answer on his stage until at least May 6th. 

Why this drives me insane: Dr. Ibrahim told us at our appointment 2 weeks ago that because Don's mel was found to be extracapsular, it put him at a higher risk of reoccurrence. She also said she had some concerns about how quickly everything blew up under his arm and thought that might indicate a more aggressive form of cancer. YET... she scheduled the repeat PET scan 2 weeks later and our next appointment with her for 3 weeks later! When I questioned her about that, she said Don would have to have time to heal from the surgery before treatment could be administered anyway.

The original PET scan he had done on the 7th appeared to have a hot spot in the right shoulder that it was believed indicated more infected lymph nodes as well as an area of suspected activity on the left side of his neck. They are having him repeat to find out if the neck area lit up was an anomaly (like a sore throat or something) or not.

I understand that it is extremely important for them to know Stage IV vs. Stage III, but does it really need to take this long? Meanwhile, Don has had no treatment all this time and that makes me very nervous that he'll end up Stage IV just from all their waiting to start treatment!

Help me not to freak out, please. Thanks!

 

Michelle

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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o2bcheri's picture
Replies 9
Last reply 5/4/2011 - 11:23am

Hi everyone...

it is so strange... I came here because my best friend ever found that his melanoma had spread to one lymph gland after 2 yrs....

he is so busy.. and I come on here every day to learn as much as i can to help my friend..

then... yesterday.. my brother called.. and told me he has some sort of lesion on his arm.. the derm did not like the look of it and made appt

to take a "plug" and have it tested... my brother had had basal cell in the past.. and he seems to think that is what it is again.. but.. i am worried..

he said it is crusty and itches.. and the word "plug" scared me as i have heard that word here associated with biopsies of suspected melanomas..

does anyone know if taking the plug means the dr thinks its melanoma rather than a basal cell carcinoma.. i have said nothing to brother as he

is nervous already... of course i told him that basal cell is not life threatening.. and to relax...

question two is...

has anyone here tried the alkaline diet??? changing the PH of the body to alkaline rather than acid???? i have read a lot about cancer not being

able to live in an alkaline environment.. and clearly... this would be most effective if started BEFORE the cancer takes hold.. or even grows at

all..

have any of you heard of this.. or tried changing your PH.???

would like some feedback on this... my best friend is doing it.. drinking alkaline water.. macro biotic food..no drinking.. no smoking.. etc etc..

i am hoping that this is a good plan of action.. or am i just being pollyanna???

 

thank you all for being you.. i have gotten involved and care so much about you all..

prayers for each and every one of you.. each night.. and always in my thoughts..

 

thanks.. michele 

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Jim in Denver's picture
Replies 8
Last reply 4/30/2011 - 4:37pm

How long after beginning to take a MEK Inhibitor should it take before results are seen (is there is any effect)?  I am taking Eisai 6201 at The Angeles Clinic, and have conpleted one cycle (6 infusions over 3 weeks, with this week off).  Tumors have increased in number and size.  Scans willl be both CT and MRI.  The Doc mentioned the possibility of doing early scans.  Should I wait for the schduled scans at 8 weeks or ask for early scans?

Also, any information about the BRAF trials for non 600E tumors and Brain mets (2 seperate trials)?  My Doc says I would be eligible for these but that they are not open yet - maybe in a few months.  Not sure if that is accurate, so feedback is appreciated.

Best wishes to all.

Jim

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Shelly in Switzerland's picture
Replies 4
Last reply 4/29/2011 - 2:11am
Replies by: Kim K, Phil S, Cate, lhaley

I have been so out of it for the past month.  bedridden, throwing up, double vision, siatica nerve in bsck snd neck with seizures.... 

Anxious for changes!  This week everyday there have been imptovments.  Today I sat at the dinner table with my family!  a major triumph!

MRI showed radiation it has shrunk the 2 large tumors. No new growth on the chest tumors from before.   Now we wait for a month and see if more it dies, ince I am seeing healthy improvements now.   (Last 4 days I have seen improvements with my left side!)

 Today has been another successful day!  Whoa!  A trip in the car to the doctors appt, sat at the dinner table for the first time in a month with my family; and George, Dad, and Lisa, along with our friend Alwyn helping interpret a tour of the Lukas Klinik and a Hospic im Parc facility in Arlesheim (all just trying to learn about options… but after today’s news not necessary for awhile.

 Today’s’ plan is that we will wait one month, stay on the Braf, reduce steroids, start the Linac (STS radiation), wait for more shrinking… then try the Iplimumab ( Yervoy).  Lots of investigation still to do...

 

 

  

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flynn's picture
Replies 1
Last reply 4/28/2011 - 4:57pm
Replies by: Anonymous

Has anyone heard of this place in the Bahamas? Any takes on it?

http://immunemedicine.com         - here's what they say..

"At the Immune Augmentative Therapy Centre we have been working to find the best therapies available to restore your immune function since 1977. Lawrence Burton Ph.D. opened the IAT Clinic in Freeport after his many years of successful research therapy in the USA on the immune systems of hundreds of terminally ill cancer clients".

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jag's picture
Replies 14
Last reply 5/3/2011 - 9:03am

CT of Chest Abdomen Pelvis all Clear

MRI all clear

I feel like a little kid again getting excited by numbers going up!

Hang in there and Fight Fight Fight!

Insert Generic Inspirational Motto Here

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/29/2011 - 10:11am
Replies by: King

Well this past Tuesday Brent started his new MEk trial at MD Anderson.  He was on  GSK Mek for 14 months and started to progress.  So after a mistake in the insurance approval, and not getting the right information about B-12 and folic acid prior to starting the trial, he finally started.  He is on MEK/Alimta combo trial.  Alimta is a drug approved for lung cancer that they are combining.  He feels well today but is sleeping more than usual.

Sharon and Brent (stage IV)

2007 Melanoma under toe nail and lymph  nodes in groin

2009 Stage IV in lungs

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