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.

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I am curious if anybody has participated in these trials at NIH?  Dave could not qualify at this time for the TIL and TBI trial due to the surgery being too risky to harvest the tumor.  If he progresses and there is disease that is resectable, then he could.  These were two other options presented to us if his tumor shows either of these expressions.

Any info would be greatly appreciated!!

Maria

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Julie in SoCal's picture
Replies 1
Last reply 8/2/2011 - 11:10pm
Replies by: mombase

Dear Friends,

I'm just posting to say hey and that I'm now 3 years NED.  There were days I didn't think I'd get this far, but thanks to God's care and good doctors, I'm in mainland Southeast Asia (mostly Thailand & Cambodia) doing dissertation research. Whowuddathunkit!?!

I don't post often but as often as I can I read and try and keep up with you all on this board-- saddened to hear of a warrior's passing and rejoicing with each clear scan.  You all have been a great source of information and realistic encouragement to me!  I'm grateful!

Here's wishing NED to you all!

Blessings

Julie in So Cal

3A, primary on back of hand,

SNB, LND, HD INF, 11 mos  GM-CSF.

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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I know it has been a few days, but I just wanted to mention that Rocky Lovelace has left us. He was know here to some as "RockLove".

You can find his obit here:

http://www.legacy.com/obituaries/sptimes/obituary.aspx?n=earl-m-lovelace-rocky&pid=152810956

http://www.tributes.com/show/Earl-Lovelace-92008463

May he rest well and fly free.

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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StevenK's picture
Replies 3
Last reply 8/2/2011 - 9:12pm
Replies by: Jydnew, StevenK, Janner

My new dermatologist had my path slides reread by "his" guy, whom he trusts and there were a couple of changes. My depth grew from .60 to .66 and my mitotic rate got more specific from >1 to 4. The mitotic rate really scares me and makes it more likely that I'm going to go forward with an SND. I meet with my new surgical onc next week. It's been such a difficult and stressful road trying to get an SNB since my first surgical onc stopped returning my calls and I've had to find a new one. Probably, since two months have passed already since my WLE, it makes sense to get a PET scan first. If cancer is in my nodes, it's had 2 months to grow. That will be one of the questions I ask my new surgeon.

I guess the high mitotic rate means I'm more likely to experience a recurrance. Do those happen on the skin mainly or is it likely to be internal? It was nodular melanoma, the new path detrermined, so I was very lucky to catch it when it was still so shallow. I wish I had been given the SNB choice back when I had my WLE. I feel nervous and unsettled. Every few hours I check my lymph nodes, but so far they remain normal. Can't wait until I'm finally past all the initial staging stuff.

Steve

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AlanM's picture
Replies 9
Last reply 8/2/2011 - 8:33pm

I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression. Has anyone here used Yervoy in a similar situation?  Given the possibile side-effects of Yervoy, I am weighing the options of only using Yervoy IF something else presents vs using it now and taking the risk of an immune system run amok.... Any thoughts?

Alan

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JerryfromFauq's picture
Replies 8
Last reply 8/2/2011 - 3:46pm
Replies by: JerryfromFauq, Anonymous, Teodora, Becky, MichaelFL

Many times recipes have been exchanged on this board.  Many pople, as well as Rox has provided many tasty ones.  Please folks, let's change the subject to ones that many of us are more comfortable with. 

I'm me, not a statistic. Praying to not be one for years yet.

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boot2aboot's picture
Replies 20
Last reply 8/2/2011 - 2:17pm

wanted to update everyone on what is going on

i have fast growing mel that spread to lungs and liver since i was initially diagnosed stage 3c in april...found out i am braf + for V600e...and venfenib is not offered here yet...

i am doing 2nd round of cvd (cisplatin, decarbazine and vinblastin) which is kicking the shit out of me...i get rescanned on the 15th of august and on the 16th, my records and i are going to tampa to moffitt to interview for braf/mek trial there...i did finally find and talk to an onc here in uh-oh (ohio) about yervoy and they seem to want to hold off until my status for trial...when i mean chemo is kicking the shit out of me is 

a. i think it is affecting my heart

b. definitely affecting hair loss, bowels and energy

c. i hate this shit

d. i have a 'gut ' feeling it isn't working...just instinct, but i trust my instincts more than oncs here

e.i am scared

f. i feel these oncs don't want to do anything with me (feel this lump here, or there) and go by scans and blood tests alone and don't care about side effects...

g. i don't want to research this crap very much any longer.

boots

don't back up, don't back down

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mbaelaporte's picture
Replies 21
Last reply 8/2/2011 - 1:39pm

I'm new here and want to thank you all for your participation

 

I am five weeks plus into PLX - B Raf trial and from the get go have had very impressive results regarding reduction in tumor size & evidence - tumors very obvious to eye & touch.  My first scans will be in about three weeks since beginning trial and I will post radiology reports.

 

Realizing how new this therapy is and how few patients are involved  with so few oncologists I'm hoping to share / study info on side effects and experiences  with a broader base than even my caregivers might maintain.

 

As I've said tumor reduction has been nothing short of miraculous

other effects:  sensitive warm scalp;

                          a couple bouts of excruciating skin burning pain chin/ears to eye brows ( three days in row about three 

                          weeks ago lasting about 30 minutes per episode ) not sure how much was medication driven or    photo 

                          sensitivity (increased w/ medication) but I had been vigilant in prevention of exposure;

                          increase in actinic keratosis lesions and ones present when trial began more amplified - both my 

                          oncologist & dermotologist who works w/ her think it fine to treat these lesions thinking they are 

                          probably considering combo liquid nitrogen & efudex - Anyone have lesions treated while on B Raf

                          drugs??

                          also just now experiencing very sensitive feelings on the bottom of my feet

 

am most interested in your experiences or information you have garnered

all the best to you, Salud john

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Ray from NYC's picture
Replies 6
Last reply 8/2/2011 - 10:10am

Hi all,

I have a close family member who is Stage IV melanoma, and I have some questions about Yervoy and its side effects.  Any feedback would be appreciated.  Thank you very much!

1.  Is it good to get side effects, particularly diarrhea?  And is it better to get them quickly?  I understand the side effects can be difficult to deal with and even dangerous, but do they mean that there is a better chance the ipi is working?  If so, could you point me to info/data/studies/reports on this? 

2.  If you get diarrhea and then are given a corticosteroid (prednisone) to counter-act those effects, does the prednisone act to partially/completely reduce the efficacy of the ipi? 

3.  Can the ipi and/or prednisone be a reasonable explanation for unexplained and very sharp and debilitating hip pain in one hip?  (This one hip also has an artificial replacement.)   A team of doctors (oncologists, surgeons, hip experts) have ruled out the patient's melanoma as the cause.  Tests run for this include X-Rays, MRI, bone scan.

(Any cites to news or journal articles, etc., would be appreciated.)

Thank you very much!  From reading the posts here, this is a wonderful community, and I wish everyone the best.

Ray

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Nebr78's picture
Replies 7
Last reply 8/2/2011 - 8:19am

Now that I have stopped anymore chemo and am ready for hospice when I need it, it seems as if  my Cancer Dr. don't care much about my condition at all.  Of course he don't make as much money this way and not administrating chemo.  I apologize for being a bit bitter, but I am afraid all this cancer treatment, etc. is done just for the money.  Research sure isn't coming up with  anything.  I am going to donate my body to a Medical School so lets hope they can learn something from it. Heart Disease for over 40 yrs. and Melanome for 7-8 should provide something interesting.

 

 

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lvitelli's picture
Replies 15
Last reply 8/2/2011 - 1:01am
Replies by: JerryfromFauq, lvitelli, washoegal, nicoli, Janner, Anonymous

I was recently diagnosed with Stage IIIA melanoma. I had a lymph node mapping the same time the melamona was removed from my left forearm. A microscopic cluster of melanoma was found in my sentinel node. That node and two others were removed. I still have my remaining lymph nodes under my left forearm. At this time, we do not know if there is any cancer in those remaining nodes. My doctor does not recommend surgery. In her opinion, the chances of melonoma outweigh the risks and negative effects of the surgery. Her recommendation is an ultra sound on the under arm every four months and a PET scan every six months. I've had one of each and so far, so good. I'm  just not sure what to do. She feels very confident in this treatment. I believe in her but have to wonder if I should do everything possible to make sure the cancer isn't there and doesn't return. I've adjusted my diet to eliminate the so-called bad foods while drastically increase the "good" foods. I drink green juices, eat lots of garlic, onions, kale, etc. I take an immune boosting multi viatamin along with D and C and drink three cups of green tea a day. Wondering if there is anyone out there with a similar situation? Anyone that had the surgery not knowing if there was any cancer in the remaining lymph nodes and the effects being felt now. I am very positive and optimistic but also want to do whatever I can to watch my beautiful 4 year old grow up.

Thank you

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bball's picture
Replies 3
Last reply 8/1/2011 - 9:42pm

what is normal protocal for ct scans in first year 2a. also having pains in my upper abdoman but had clear ct scan 5mos ago . any input?

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Cynthia C's picture
Replies 3
Last reply 8/1/2011 - 7:24pm

Just a little note to let you know how much I respect you and care about you. Thank you for sharing your lives with us. The bond you share is unshakable, inseparable and unstoppable. I believe you will meet again. May God protect you and guide you on the journey yet to come, keep you warm and safe in the shelter of his arms forever.

Cynthia C

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TracyLee's picture
Replies 7
Last reply 8/1/2011 - 7:03pm

Hi y'all,

Fourth and final ipi transfusion today. The consensus is that I'm not responding, I'm praying I'm a late response.

I must brag on my team. I was supposed to have my treatment yesterday afternoon. Hospital called and said I needed to re-schedule to 4 p.m. today. They couldn't obtain the drugs sooner.

Now, our transfusion center is open from 8 a.m. - 5 p.m. This process takes around 2.5 - 3 hours. So I knew 4 p.m. was too late to start. But...my doctor and his assistant volunteered to stay with me until I was done. I call that caring above and beyond the call of duty.

Next week up to U of Penn to start BRAF+ expanded access trial. Prayerfully I respond to ipi/BRAF. My neck is very distorted, although I'm able to hide most of it with my hair. Plus I had fluid in my lungs and had to be drained this past Wednesday.

Praying for a comfortable, and responsive, weekend to all the warriors and caregivers, on this board.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Lisa13's picture
Replies 12
Last reply 8/1/2011 - 3:54pm

I've been thinking about all these "stat numbers" for ipi and all other drugs in clinical trials. These results are from a large group of people from different ages, health status, sex, etc.  My question is, have any of these studies been broken down (mainly in Stage 4 patients) in terms of M1a, b, c, LCD levels, health etc?  I think any of the results would be very different if they were broken down in these groups since some people with Stage 4 are healthier and have controlled disease over others.  Take for example, the TIL program at NCI. My oncologist mentioned that even though the results are good from this trial, Rosenberg is very selective in who is accepted in the program and it's mainly people who are healthy, so these people would generally do better under these circumstances, or so you would think. 

Going into an ipi trial myself, I look at all the numbers from previous trials and wonder what everyone's predicament was at the time. With IL-2 - they claim that 6% have a complete, durable response - were these people younger, healthier, less disease, etc??  As I'm fighting this beast, I dwell too much on the numbers and look for the odds that something will work and it drives me crazy!  I'm going to try very hard to go into this ipi trial and just hope for the best and not dwell too much on the numbers.

Lisa - Stage 4

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

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