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.

Expand/ Collapse Topic
 
Replies By
View Topic

When I was researching a cure for my melanoma this would have been a Godsent!

Best wishes to all who are fighting this disease....  Gene

http://www.hindawi.com/search.aspx?startindex=1&field0=9&q0=melanoma

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 8/9/2012 - 8:13pm
Replies by: Janner, Anonymous

Hi

I'm 2 months put from WLE and SLNB for a stage 1 b melanoma on upper arm so tensions are still high.

I went in for my first melanoma skin checkup and Derm was rushed. I pointed out 2 very small brown pigmented "things" that didn't even resemble a mole. I am fair skinned and they looked like a freckle- honestly.

Derm reluctant to take them off saying nothing to worry about but I persisted. Here are the results:

Lt arm: pigmented surface lesion 0.3 cm in greatest dimension. Sections show slight elongation of rete ridges and a proliferation of mildly atypical melanocytes arranged mainly as single cells with rare nests along the dermal epidermal junction. The melanocytes possess lightly pigmented cytoplasm. There is a rare melanocyte noted above the basal cell layer. There is fusion of rete ridges and lamellar fibroplasia. In the dermis isa band- like arrangement of benign nevus cells, scattered melanophages and a mild lymphocytic infiltrate. Histology that of a Dysplastic nevus with unusual features. Conservative re excision of scar recommended.

Left breast: pigmented surface lesion 0.3 mm in greatest dimension. This is a thin shave biopsy which shows elongation of rete ridges and a proliferation of mildly atypical melanocytes with lightly pigmented cytoplasm arranged mainly in a lentiginous pattern along the dermal- epidermal junction with rare nests. There is a rare melanocyte noted above basal cell layer. The epidermis is vocally excoriated and rare necrotic keratinocytes are noted within the superficial epidermis. There is a fusion of rete ridges and lamellar fibroplasia. In the dermis is a rare nest of benign nevus cells scattered melanophages and a mild lymphocytic infiltrate. Histology is that of a dynastic nevus which has been excoriated. Although the rare scatter can be explained by local trauma and special site, it would be prudent to re excise scar with conservative margins.

Now I'm off to plastic surgeon ! What should I do moving forward? I have a few of these very " innocent" looking freckles on my back that do not have elevation and look normal? The Derm didn't want to pursue taking even these ones above off for pathology! Should I be worried a d get a other skin check done before my next scheduled in 3 months? And I sits every "freckle" that looks like the ones on breast and arm be taken off?

Thanks friends,
Francesca

Login or register to post replies.

himynameiskevin's picture
Replies 22
Last reply 8/9/2012 - 8:10pm

Hi this is Brenda writing on behalf of Kevin. Unfortunately I had to check him in to the hospital today. He began having intense pain in the lower part of his head Sunday night, lasting all day Monday. He was already having trouble eating, what with all the stress of waiting for scan results, and the pain made it worse. Unable to sleep or hold any sort of liquid or medication down, we made the choice to go to the E.R ,  we were only there for an hour, they gave him a prescription for pain (Percocet) , told him not to stress, and sent us on our way.

The pain medication didn't help, after numerous calls to his radiation oncologist, we got a call back with the advice to have him admitted. Although his wish was to zap the remaining mets in his head and start IL2 and possibly go back on Zelboraf it looks like we may have to take another route. Because of all the swelling in his brain he is back on a steroid (for now),  with the addition of new mets in his lungs and one in his hip area, the plan now is to do whole brain radiation and follow up with Temodar, with the hopes of some brain stabilization in order to be eligible for some clinical trials (fingers crossed).

Even with this small bump in the road his spirits are still higher than ever. He's a fighter, he's Kevin. And Kevin doesn't give up.

His mpip family has always had a special place in his heart, so i ask all of you to please send Kevin some good vibes.

 

i wish all of you love and healing.

-Brenda.

Login or register to post replies.

Hi: I'm looking for personal accounts of melanoma patients who have had a single brain met removed and who then underwent radiation to minimize odds of recurrence. I had a temporal lobe lesion resected on Sunday; follow-up MRI showed no residual tumor. My choice now is to either go with gamma knife or whole-brain radiation. I'm getting opposing opinion from docs in on my care. My preference is gamma knife--quick and relatively harmless, but want to make sure whole-brain isn't worth the side-effects if it provides significant advantages in reducing recurrence. Let me know if you have experience to speak from or an informed opinion. Thanks.

www.theogler.blogspot.com

Login or register to post replies.

Gene_S's picture
Replies 2
Last reply 8/9/2012 - 7:17pm
Replies by: Gene_S, ToddC

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Kellie-T's picture
Replies 2
Last reply 8/9/2012 - 7:14pm
Replies by: lhaley, Dgentz

Just heading home from Moffitt. Six months on Zelboraf and still NED. My hair that was thinning is coming back curly. Side effects are really stable now. Living life and loving it! Keep fighting!

Life is not by accident. Make every minute count.

Login or register to post replies.

Laurie from maine's picture
Replies 12
Last reply 8/9/2012 - 6:45pm
Replies by: Gene_S, Anonymous, TSchulz, Laurie from maine, NYKaren, Phil S

Hi,

I am in a limbo phase at moment while I wait for a zapped brain met to "calm down".  I will have scans in a month to see how brain is and then have to chose from the "short list" my doctor as suggested. 

His suggestions are IL-2 or TIL. (I am leanings towards IL but I was told if scans show brain involvement on next scans IL will not be an option as it doesnt cross brain barrier)   Doctor  and I will continue to look at PD-1 trials but he is pesssimistic that I would get a seat as there are few trial and brain involvement moves you down the list he thought, but I still will look/hope and apply.  BUT meanwhile have to have another game plan as back up.

I was told it would be very hard to push for a reinduction of IPPI for me as i was a mixed responder with partial growth or some shrinkage in most tumors but real growth in my shoulder tumor.  I was a partial responder (story of my life with melanoma it seems) with BRAF and grew 3 very agressive tumors in my intestines so BRAF scares me as a choice to go back to.  I am going to research BRAF MEK combo but I believe my doctor does not think I qualify for that one? not sure why.

I have just found a new small tumor on my other shoulder and this one is painful - that is new for me most of mine are not painful, it makes me scared that cancer is starting to ramp up on me.  

I would appreciate any thoughts or input from people as I sit in limbo I can do research and come in armed with my own thoughts on plan after I hear my scans results.  I am currently getting radiation on my shoulder to cut it down a little as it is a very large tumor.

 

you are all in my thoughts and prayers-thank you

laurie from maine

Login or register to post replies.

Dgentz's picture
Replies 3
Last reply 8/9/2012 - 4:39pm

Not sure when I last updated, but my IL-2 was not very successful, so on 7/9/12 I started Zelboraf. Dr. Started me on 4 pills a day, increased to 6. Now moving slowly toward the full 8 (adding 4th at night for 5 days then to morning dose). Got BAD sunburn - apparently shade is not safe enough! ;)

Joint pain has been my worst side effect though. Has anyone tried any supplements like Osteo Biflex (glucosamine)?? Advil doesn't seem to be doing much lately.

Login or register to post replies.

sandywebb's picture
Replies 4
Last reply 8/9/2012 - 4:22pm
Replies by: Snickers60, Janner, sandywebb, Anonymous

Well, had my 5yr. scans and I had been NED this whole time. Got results yesterday and they are showing "A slightly irregular noncalcified nodular opacity has developed in the left upper lobe measuring up to 5mm in diameter. The differential diagnosis includes metastatic disease, primary lung neoplasm, or an unusual small focus of rounded pneumonia."  My doc has me scheduled for 3 month re-check scan to check the progress of the nodule to see if there is any change. Needless to say I'm pretty much a basket case right now. Any thoughts on this??

Login or register to post replies.

rrrule32's picture
Replies 4
Last reply 8/9/2012 - 3:42pm

Hello All,

My fiance, Kaitlyn, is 23 years old and has Stage 4 melanoma.  It has moved to her brain.  She starts radiation tomorrow.  They are doing a type of focused radiation, I don't think it's SRS or Gamma Knife or Cyber Knife, but they have this new machine that, as it's giving her whole brain radiation, when it gets to her brain mets, it will stop and dosage will increase.

I'm wondering, people in Kaitlyn's situation, do you have any advice for treatments?  Anything that worked for you?  I'm trying to get our oncologist to give her her last dose of Yervoy.  She had her first 3 doses, and they started working on her body.  Have any of you ever heard of Mannitol?  It's a natural compound that opens up the arteries to the brain and also shrinks the endothelial cells that block foreign agents to the brain.  I'm thinking if Kait were to take Mannitol before receiving any kind of treatment, it would be able to reach the brain.  Anyone else heard of this?  Her oncologist right now doesn't want to give her her last dose of Yervoy because he thinks it could counteract with the radiation.

Anyone ever heard of Hemp Oil from the famous Rick Simpson?  Not hemp seed oil, but hemp oil.

Any advice?  It would be appreciated.

Thank you,

Travis

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2012 - 1:44pm
Replies by: Janner

I had a question about PET scans.  I had a very large skin tag (which all my doctors have said looks fine, hasn't changed in years, etc).  I did have a PET scan right after being diagnosed with Melanoma.  If it were Melanoma - it would have shown up in a PET scan right?  Even though it's on the surface of the skin?  Not sure how that works sometimes.  

I know my original surgical onc asked if I wanted it removed and I said to just leave it but I think when I see my derm in a week or so I'm going to just get it removed.  It seems to be a bit irritated lately (I think between the heat and humidity and Zelboraf).  Oh the joys of melanoma!

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

Login or register to post replies.

NYKaren's picture
Replies 9
Last reply 8/9/2012 - 11:53am

On the positive side, my adrenals seem to be functioning, so I'm off hydrocort.  Just to make sure, I'm going for a stimulation test beginning of Sept., sooner if I don't feel well.  Also, after second infusion of Remicade, my colitis completely disappeared.  As I've said, it's like a miricle drug.

On the other hand, none of my treatments  have stopped the progression.  Radiation results were temporary--side effects are permanent. (bald spot, lack of saliva, can't open mouth wide, etc)  i wouldn't even give them a second thought if it had helped, but, as soon as the radiation was stopped, the mets were on the march again.

Yervoy #1 I got through with minimal side effects--was kept on Budesonide for diarhhea and dealt with fairly severe rash but alas, didn't stop the mel.

Got through every single bag of IL-2 like a champ, was doing so well after second round, I went back for a third.  Guess what--no lasting remission.

Yervoy #2 caused colitis and colitis treatment caused adrenal insufficiency.  Yervoy was March/April, finally back on my feet.

Continual freezing of mets/applying Aldera is of minimal help, some mets do disappear, but others keep spreading.  The met in my ear is getting closer to the drum.  Seeing surgeon at Sloan who has ear experience on 8/28.  (oh the joys of trying to get doctor appt's in August--two docs tried getting me in sooner!)

I have not been eligible for PD-1 trials when there were seats...usually no measurable disease on NON-IRRADIATED skin.  NOW, I'm on my fourth treatment, so that disqualifies me from Merck, and Remicade disqualified me from BMS.

My fourth and latest treatment is Temodar.  If Temodar does nothing, Dr. Wolchok will ramp up to combo chemo.  He told me that there will be other drug companies developing Anti PD-1 drugs, and his hope is to keep me stable until another trial becomes available.  Of course I am BRAF and C-Kit negative.  I am feeling small nodule on my collar bone, will ask surgeon to do a needle-biopsy. 

Dr. W. was thinking down the road about TIL, so he tested my blood, and of course, I don't have the right (something or other) that NIH would want, so another dead end.

I do think that all these treatments might have slowed things down, the glass cannot be half empty, but must remain half-full.

That's my update.  Take care everyone; you're all in my thoughts.

Karen

Don't Stop Believing

Login or register to post replies.

The American Cancer Society is out with its annual report, showing how states are doing in the fight to prevent cancer. The study measured states on seven issues. For the first time, the study ranked states on laws regulating tanning salons. Nationwide, the report finds nearly two thirds of states falling short in the battle against cancer. Only two states, Delaware and Vermont, get high marks.

Read the report: http://cbschicago.files.wordpress.com/2012/08/hdymu-2012-final.pdf 

 

Login or register to post replies.

Lori C's picture
Replies 4
Last reply 8/9/2012 - 7:12am
Replies by: Lori C, lhaley, Jeff's Mom

I wanted to check in and say that I still read the boards and am keeping all of you in my thoughts.  I have not seen any posts from Charlie in a long time and if you are out there, Charlie, I hope you are doing great.   Am praying for HimynameisKevin and all others who are having struggles with this illness.

I have been trying to keep up with melanoma treatment news because I am doing some writing (for school - I'm in DePaul in Chicago) on the US clinical trial system.  If anyone would like to discuss their experiences with the system of locating and participating in clinical trials with me, please email me!  Brennan07@aol.com

I am also writing about Will.  A week ago, I testified in front of the Illinois General Assembly hearing on abuse and neglect of people with disabilities to tell Will's story.  I have written about it on a blog I created for him.  His melanoma fight is a big part of it, and thought some of you might be interested.  Will was an amazing warrior in all his battles.  I miss him constantly.  The blog is JusticeForWill.wordpress.com

Lori

Login or register to post replies.

Pages