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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melanomafighter's picture
Replies 16
Last reply 12/14/2010 - 12:15am

I just wanted to let you know those of you who doubt Interferron there is hope.  I had my first scan since my LND and interferron injections and it was negative.  I was told I took well to the interferron and my bloodwork and weight was back to normal...keep in mind I did not complete the year program I only did the high dose and three weeks of the low self injections  Thought I would share the good news with you all  .Good luck to each of you  NED for the first time since diagnosis.

Remember what's important and make everyday count

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Carmon in NM's picture
Replies 3
Last reply 12/13/2010 - 8:09pm
Replies by: Lori C, lhaley, King

On Wednesday I'm scheduled for a full body CT and brain MRI to see if I am responding to the carboplatin/taxol/temodar Phase II trial I'm on. For such a long time (nearly two years) I didn't even think about scans but after brain mets in June followed by an adrenal tumor found in September, I find I am definitely thinking about this one. It isn't with the terror I had during that first year but flashes of anxiety are definitely popping up.

Plus, my oncologist, who I absolutely have loved and had total faith in, announced she is leaving UNM to take a wonderful position in the northeast in February.. She has assured me that all of her patients will be assigned to top oncologists and that she will leave them with a complete treatment plan. I trust her in this too and she has been such a caring doctor that I can only wish her the best - she deserves a life too!

The second infusion was much harder than the first one. I was hit really hard on the third day, no serious nausea, just extreme body and nerve pain. Also, the oral temodar caused me to faint one night resulting in a dislocated rib. I was so mad! It wasn't bad enough that I felt so horrible, then I couldn't breathe either! I actualy questioned my resolve to get through six cycles but just like the first time, on day eight it all passed and my usual optimism set in and I knew I can get through seven really hard days if it means defeating this beastie.

I find that about all I can manage to eat on days three through seven is broth and soft foods. It isn't that it makes me sick but that I have no appetite at all so I stick to nourishing things that I can easily get down. But boy, when day eight gets here, my appetite comes back with a vengence and I eat everything I can for the next three weeks to try to maintain my weight. Guilt free eating!

So if the scans show no new tumors and stable or reduced disease, I'm on for four more rounds. The next one on Dec 20th which means just like Thanksgiving, I'll be feeling the worst right through the holidays. But hey...I feel that I'm not doing this just for myself, I'm doing it for my husband, my family and all of the friends who have been there for me every day while my husband works out of state. The friend who rushed me to the hospital and saved my life when an undiagnosed brain tumor began bleeding into my brain. And the ones who have showed up every day to feed our horses and take care of outside chores when I've been too sick to.

I know this will sound impossible to newly diagnosed people, or those still in the first years of fear, but in many ways this disease has been an incredible gift by bringing me closer to the people I love and of learning to live fully in each moment with humor and joy. For everone else out there waiting for results, struggling to get through treatments, or caring for loved ones who are facing those things, I wish you peace and joy through the holidays and beyond! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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sharmon's picture
Replies 11
Last reply 12/13/2010 - 4:44pm
Replies by: Jim in Denver, sharmon, Anonymous

Hi everyone,

Brents scans this past last week, after 9 months, where mixed.  Some measured a tiny bit larger than 2 months ago, but not as big as the baseline scan from February.  His doctor did not take him off the trial, for which he was grateful,  saying there is not significant growth.  Yesterday he is telling me he has some strange (discomfort in the lung area near where the growth was measured to be the most).  He will be scanned again in February. 

We are looking into the plan B for the next treatment.  He was retested for a whole list of mutations and is negative.  The NRAS and GNAQ results are still not available.  He was Braf negative when he went on the trial.  The arm  of that  trial he started in Feb. was for solid tumors and he did not have to be  Braf positive to begin treatment.

He feels fantastic,  great appetite, high energy, and no real pain to speak of.  His breathing is good also. 

We know that CT scans can show different things at different times and are not perfect.  This could account for the difference from this scan to last.

We also know that most trials require that you not have previous treatment with inhibiitors.  I am aware that it is not going to be easy to move onto the next treatment and want to have some options in mind aheard of the game.

Anyone out there who has failed  a MEK inhibitor and has moved on to another trial?  Your input and feedback would be greatly appreciated.

God Bless you all.

Sharon and Brent

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dian in spokane's picture
Replies 9
Last reply 12/13/2010 - 8:18am

Done! I am done! It seemed like the wait to get my first shot in this trial was endless, but the 6 months of actual treatment has flown by.

Today I got my last shot, and went into the trial record books as a success, or at least not a failure<g> It's only been the last couple of shots that had a reaction before I left the hospital (I have to stay for the first hour) Today, as expected, my skin reaction was much more pronounced. If things go as expected I'll have my worst swelling so far, and I''ve been warned to watch for systemic reactions. But I am just a few blocks from the hospital, so I am not too concerned about that..only about the swelling to come. I am icing my thigh and have cozy clothes and no demands.

We are staying overnight here, then driving back to las vegas tomorrow and I don't have to fly again till monday, so hopefully by then the swelling will be down.

We've made quite the trip out of this LAST trip down here. We flew into Las Vegas to have a couple of nights of Hannukah with bob's dad ( I need to update the off topic board on Joe!) then drove down here on tuesday. This last visit included a skin test, which we did on Wednesday morning. This is a simple thing, a tiny injection just under the skin on the arm. then they mark it and 'read' it 48 hours later. So we did that and had all afternoon Wednesday and all day Thursday to hang out at the beach! We are staying on the Balboa Penninsula, and we've had a dandy time escaping the 2 feet of sloggy, refrozen snow in Spokane.

Along with the skin test on Wed., they drew blood. About 3 or 4 vials in my blood just stopped flowing, and so I got jabbed a few more times before they had success getting a vein for the OTHER 4 vials. yikes!

Today was my last visit to the Hoag. The rest of my followup will be done via phone calls and emails. And my doc will be sharing scan reports and labs on a certain schedule..every 6 months I think. My next scans aren't scheduled till March, unless my local Oncologist decides to move them up to January. I see him next week.

I will keep my fingers crossed that this vaccine has been effective for me. I remained NED a long time (11 months) while my cell line was growing, so I'll never know, if I stay NED, if it is because of the vaccine, or if I would have stayed NED anyway. But I am constantly reminding myself that it's been over 2 yrs now since I moved to stage IV, and 19 months now that I've been NED. It's a fabulous thing to be thankful for.

Dian

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/12/2010 - 7:35pm
Replies by: Sharyn, Anonymous

It has been awhile since Sharyn has posted. I am worried. Anyone know how Sharyn is doing????

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/12/2010 - 4:02pm
Replies by: Anonymous, Janner

I had an odd mole on my finger in my teens.  It always caught my eye.  It eventually disappeared.  I've had early stage melanoma.  Should I worry that that mole, years ago, was a melanoma that regressed?  Or is it normal to have moles regress in teens/early twenties?

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tri_girl's picture
Replies 4
Last reply 12/12/2010 - 11:47am

I had a CT scan after almost 3 years of clean scans and there is a spot on my liver.  I had a PET scan done last week  and waiting for the results...and very worried.  Any one had liver surgery?

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Anonymous's picture
Replies 1
Last reply 12/12/2010 - 11:34am

http://www.clinicaltrials.gov/ct2/show/NCT01248936?term=ml25597&rank=1

 

Patients must have the BRAF V600E mutation, failed prior systemic treatment and no symptomatic brain mets.

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EmilyandMike's picture
Replies 1
Last reply 12/11/2010 - 7:46pm
Replies by: Lori C

Hello everyone:

I recently found a fundraising link for Tom McLaughlin who was featured in the NY Times article on melanoma clinical trials back in September. The story of Tom and his cousin was so sad.  I wanted to thank him for doing the interview and exposing the treatment of melanoma patients in these trials.  His mother sent me a link to the video below and it it a good one to share. Perhaps MRF has some suggestions on what we can do as individuals to make sure clinical trial rules are clearer and more fair.  These trials are the only real option for most people with advanced melanoma and because melanoma isnt like most cancers the clinical trials should reflect this!  And it really pisses me off that there arent more trial options for stage 2/3 which would logically seem to be the best time to do treatment - BEFORE it spreads.  Melanoma is so unfair but these clinical trials should not be.

Video from Nov

http://www.bakersfieldnow.com/news/investigations/106491678.html?tab=video

NY Times article from Sept

http://www.nytimes.com/2010/09/19/health/research/19trial.html

Fundraiser for Tom

http://www.raiseitnow.com/4254/thomas-struggle-with-melanoma/

 

Thanks for listening - felt like venting

Emily

wife of Mike, stage 3a

www.emandmichael.com

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

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Anonymous's picture
Anonymous
Replies 0

 

Hi Linda,

Happy to see you post. I have been wondering how Cass is doing. She is in my prayers and I always think about her.

Any update on Cass would be great, we all care about her.

Tell Cass Jan sends her love & hugs.

 

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scots's picture
Replies 7
Last reply 12/10/2010 - 11:54pm

I finshed the HD interferon on Monday.   That was a tough 4 weeks.   I still feel almost as bad as I did while takeing the HD.    I'm getting ready to start the 11 month low dose regiment which I'm not looking forward too.  Hopefully the LD will not be as bad as the HD.

 

Scot

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lhaley's picture
Replies 15
Last reply 12/10/2010 - 10:35pm

2 months ago I had surgery for 2 different sites.  Today I had PET/CT scan.  This time they found a tumor in the right lung, actually 2 tumors. One was stable from previous scans (didn't know I had any before!!) . The other doubled in size but is still small. .6 x .7 cm.   Too small to biopsy, too small for trials. In 3 months they will rescan and make decisions. 

We looked back at previous scans and in retrospect it could be seen as a spec in Sept. of 09. I guess the good news is that it's slow growing.  Meanwhile I got back the testing on the tumor that was removed and I am B-raf positive.

My history is a bit unique. For those of you who don't know I was originally diagonsed in 79' with my first recurrance in 06. Since then I've had 1 recurrance in breast, 2 in bladder, 1 in lymph node under clavicle, 1 in lymph node in arm and now this. Because my immune system has slowed everything down, my mel specialist is leaning towards immunitherapy at this point to give my system a boost.  I guess dicisions are being made in 3 months.

Sure wish I could have been happy dancing tonight.

Linda

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Vermont_Donna's picture
Replies 3
Last reply 12/10/2010 - 5:27pm
Replies by: Fen, ValinMtl, lhaley

Hi,

Got the wound vac yesterday....need to have the dressings changed M-W-F.My leg already feels better with this "negative suction". I also was seen bythe hyperbaric oxygen chamber treatment doctor...I am a good candidate for this too...can do both. The new chamber has a clear top so you can see out and you can watch a movie. The old one has a solid top and you can only listen to a book on tape...that would be ok with me too, but being able to see out for me would be good. Plus I would need some ativan!

I am going to see another oncology surgeon at DHMC who is from MD Anderson...see what he might think about my course of treatment, what other suggestions since, amputation seems to be so popular among my docs. (Not me).

I have found three new melanoma spots on my leg, so am feeling discouraged. Thank God I am doing Ipi! I am going to see a naturopath for some different ideas and see what I can blend in to what I am doing.

Thanks for listening everyone!

Vermont_Donna

stage 3a

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Everymoment's picture
Replies 9
Last reply 12/9/2010 - 10:35pm

Hi guys,
So I have had four primaries and I feel like I am just waiting for something to go wrong. One cell had to have gone through. Why is it that a 9 year old has to have melanoma in her brain and I am still here? I wait each and every day to feel a swollen lymph node......it should be happening to me...I had vulvar melanoma .... I just don't get this disease.....will it wait until I'm happy and I have my first kid to strike !!!!! When!!!! I'm ANGRY that this has taken over my life....I actually think about whether I will make it through a Phd program if I start...Errrr.
Everymoment

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Lori C's picture
Replies 1
Last reply 12/9/2010 - 9:51pm
Replies by: washoegal

I am continuing to read this board and praying for all of you fighting this disease.  I am having a rough time since losing Will, as I had no idea what it was like to lose someone as a caregiver.

Before Will got so ill last April, we had just begun  working on a film project about his life - we'd hoped melanoma would be a bump in the road.  It turned out to be a wall that we could never quite get past.   Will quickly became too sick to continue with the project.  I had already written a number of articles about him and his remarkable spirit and courage and life, and am trying to continue work, this time on a book. 

I am trying to capture and describe the emotional pain of this illness and finding myself at a loss.  If anyone on this board would be able and willing  to contribute their thoughts on this subject, I am asking you to please email  me at Brennan07 at aol.com 

No one's name or identifying information will be used unless you specifically ask that I do so, in which case I'd be happy to oblige.  This board was my support during Will's fight.  Will, though, was quite isolated except for me, until someone from this board read about him and offered to talk to him.   As I've mentioned, he was a person with a disability (labeled mildly cognitively impaired, a label I thought was very inaccurate - he'd had what was likely a prenatal stroke and suffered a series of misdiagnoses and educational malpractice experiences).  For months, I tried to find him support through various organizations - all the likely suspects, and then some.  I could not.  I could not find support groups or a therapist who would take him on.  The person from this board (and if you are reading this, I can never, ever thank you enough)  was the only other person with melanoma he'd ever met, and was an immense blessing.  But the emotional toll of this disease was devasting on both Will and me.  I want to make sure I write about it with the respect and accuracy it deserves.

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