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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youngann's picture
Replies 9
Last reply 11/1/2016 - 5:16pm

I'll be having my 4th Ipi infusion this coming Wednesday and, today, I had my second set of CT scans. I'll be seing my oncologist on 11/17 so probably won't know the results until then.

Fingers, toes and everything else crossed in the hopes of good clear scans.

Ann

 

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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miaka618's picture
Replies 2
Last reply 11/1/2016 - 8:04am
Replies by: miaka618, youngann

I posted a while ago about insurance problems with my adjuvant treatment. I am happy to report that everything has been resolved and I no longer owe a quarter of a million dollars. :-D 

My aunt did get a second opinion on her moles and everything came back negative on that. 

Even though I only had one dose of ipi, I did develop issues with my pituitary gland approximately a month and a half after the treatment, so now that insurance is back in order, my treatment is still on hold to see if my pituitary will bounce back. Oh well. The wait continues. I get to have another scan soon so let's hope it comes back clear! 

I'm glad I found you guys. This site is a treasure trove of life experiences, and I may have been more worried about the headaches I was having if I hadn't read about so many other people experiencing the same thing with the ipi side effects on the pituitary. I wanted to say thank you to that. On that note, I may have to find a different local oncologist. She didn't believe me when I told her it might be my pituitary gland when I came in for the headaches. She didn't even do any blood tests to check hormone levels. She scheduled an MRI for 3 weeks later, and only after I was urged to go to the ER for the MRI by my specialist out in Madison did I finally get some relief. I'm telling you, those headaches were no joke. There was no way I could wait another 3 weeks. I'm feeling pretty good right now. Tomorrow I get to go for a drive to see how my hormones doing. I'm glad the weather is still nice. :-)

April 

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bruski1959's picture
Replies 7
Last reply 11/1/2016 - 12:50am

Jackie had her 1st two Yervoy dosages on 3 week schedule, but started having intestinal side effects 10 days ago. For the first few days Immodium and clear liquids/bland diet seemed to be tolerable. Then nausea kicked in, and Jackie started dehydrating rapidly. A trip to the ER was necessary to rehdryate Jackie with IV fludis and anti-nausea meds via her port. Also, her potassium level was low, so she had some IV potassium. Got her stabilized and back home 5 hours later. Then she was put on high dose steroids to combat the now more frequent intestinal side effects. Jackie has had trouble resting and has had some confusion too. She was advised to take Benadryl in addition to strong sleep aid to help her rest. The Yervoy intestinal side effects subsided, but the side effects of the steroids have been troubling. Tomorrow at Jackie's oncology appointment we expect the steroids to start to be tapered off.

On another note, a friend of ours daughter has taken two Yervoy doses, and had to discontinue the Yervoy due to the side effects, and has remained on high dose steroids and bland diet. But the Yervoy has stimulated her immune system enough to shrink the melanoma tumors in her liver.

Not sure what the plan is yet, but for now Jackie's 3rd Yervoy dose originally scheduled for March 16th has been postponed. Will see what the oncologist recommends and what Jackie wants to do. She hasn't been herself at all these last 10 days, and I think it would be hard for her to make any decisions tomorrow. I think we will need to let her taper off the steroids a bit, get caught up on some rest, do her weekly blood tests, and take it from there.

We finally got the Explanation of Beneifts for the first Yervoy treatment. The charge was $36,000, the negotiated rate was a little over $22,000. Since Jackie has already met her deductible and 2012 annual maximum out of pocket, our cost was $0!

Appreciate any feedback anybody has on their experiences with Yervoy side effects, steroids side effects, stopping Yervoy treatment after 2 doses, and continuing on with 3rd Yervoy treatment.

These last 10 days have been challenging, to say the least.

Thanks,
Bruce and Jacie

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snow white's picture
Replies 11
Last reply 10/31/2016 - 9:56pm

Hi everyone,

Good news: Dad finally got to come home from the Rehab Hospital on Friday.  He is doing well, walking on his own (slowly) doing small sets of stairs, bathing etc.  Its going to take some time before he gets all of his strength back, but I have faith that he will.  He will be having therapy at home to help with this.

He had all 82 staples taken out of his head on Friday.  On Monday 10/31 he will have a port o cath placed, then on Tuesday 11/1 he has his first dose of NIVO. Finally!!!!  I am hoping that it isn't to much time in between the Gamma Knife and first dose of NIVO for the benefit of the absopal effect. We shall see.

I will update to let you know how the first dose goes.  Fingers and toes crossed that it goes well.

:)

xo

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/31/2016 - 7:23pm
Replies by: Anonymous, Janner, Cathy M

I had a quick question about melanoma.  My husband developed a tiny mark maybe 2-3mm on the bridge of his nose around 2010. It came after a trip to the beach. It is dark brown and looks like a zigzag if that makes sense.  He has been to the dermatologist and they never mentioned it.  I asked him to get the spot removed and he won't.  The spot has not changed or grown since 2010 but just looks weird to me because of the zigzag shape.   If this was something sinister would it have grown or changed  over the last 6 years? Thank you 

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SOLE's picture
Replies 15
Last reply 10/31/2016 - 5:33pm

I am asking for your guidance please.

And also, for all of you who might read this and think: "Sole is so negative man, he just lets melanoma poison his life and he surely wants to die or something", please dont comment. For now.

I just came back from yet another depressing meeting with onco surgeon and hemaro oncologist. Suffice it to say that except pembro in Quebec and the braf and mek inhibitors and maybe two ro three more (less effective?) drugs, there wont be much more medicine available if/when I progress to stage 4.

Apparently, the nivo/ipi combo was just approved by Health Canada yesterday. But it is up to every province to administer their health funds and in Quebec, we will not ever be able to afford such a thing. It is simply too expensive for our society to spend a million bucks on a patient. I'm afraid my sand box has suddenly gotten very small.

So here is my question to you canadian friends (Ed are you there?): adjuvant therapy for stage 3 aside, what is available in your part of the country for stage 4? Do you have access to ipi? We'll have to see which province agrees to reimburse the combo but I am faced, yet again with more difficult choices.

As for my decision about interferon or c'inical trials and therefore CLND, it will depend if my low aggregate patelet condition can get through or not with the two administrators of those trials.

I will find out sometime soon next week I presume

If there is a richer province, I might have to consider moving if I can and leave all behind me if/when I progress.

On the other hand, some of you have survived despite all the new drugs available today. But I feel very helpless at the moment, contemplating the possibility of not being able to possibly survive this.

My apologies to everyone who gets offended by my attitude. It is not my intention. My melanoma picture has just drastically changed.

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/31/2016 - 4:43pm
Replies by: Tim--MRF, Anonymous

I have had like a purple like stain under my toe since at least July. I didn't do anything about it because I thought it was a bruise from too tight shoes.  But when it didn't go away I googled it. 

I am worried about amelanotic melanoma. I went to the doctor asap. But it has taken 15 days just to get to the point of scheduling a biopsy.   The derm bearly looked at it and wanted a biospy.  It really isn't brown or black but more like purple / red. 

It is about 6mm at its longest point. It is shaped like a triangle but not 100% asymetrical... but about 90% asymentrical.  I don't think it has moved or changed at all in the 6 month period.  It does not look like it has grown with the nail but I admit I haven't been looking.  I have been taking photos since I discovred it and I can't see anything changing.

I am having a hard time with the doctors. I can't seem to get them to give me an appointment that is reasonable. My derm said I shouldn't have the biopsy any later than this Wednesday but they want to do it the third week of November. 

My derm is kind of siding with them. But I feel like that is a month and a half and I honestly have no idea when this started. I just wans't paying attention in the winter to my feet. 

Anyone know how long it takes for melenoma to spread? What would be considered getting it early? I have no pain or itchiness. Nail is in good shape.  My best guess is that this is related to this winter when I started wearing shoes that were too large and my foot kept sliding around possibly banging on the toe. 

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Bruce Davis's picture
Replies 1
Last reply 10/31/2016 - 12:03pm
Replies by: SOLE

Just felt I had to share my experience as I read a simular one about a year ago or so that gave me inspiration. I've had it easier than a lot of stage 4 people. Interleukin 2 wasn't much fun and either was the "6 months to a year " to live diagnosis from 3 sets of Oncologists in 2011. No primary location was ever found. A nodule appeared in the left arm pit after "leaning" on crutches for 6 weeks following a hip resurfacing.The 6 cm nodule along with the remaining lymph nodes were removed and radiation followed.About 2 months later nodules presented in the lungs. The largest being 5 cm. Being BRAF+ I started Zelboraf in September of 2011. After a few months the CT scan showed the nodules shrinking. After 4 years and 9 months of Zelboraf, the Oncologist let me stop taking it. A 3 month follow-up CT scan showed no progression of disease. The CT images might be mimicking small nodules but could represent scar tissue. I heard the protocol now is to stop Zelboraf after 2 years.

Being off the Zelboraf for 3 months most of the side effects are gone and I'm getting back to normal. I realize melanoma could resurface at any time, but I'm very thankful for every day! Hope this information helps.

Bruce

 

Presently it's "Don't give up."

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Anonymous's picture
Replies 1
Last reply 10/30/2016 - 2:00pm
Replies by: youngann

Hello, i just joined this forum. i used my actual name as the username to log in.   I would like to use a nickname to post however.  (not aninymous).

Is this possible ?  or are my only choices "anonymou"s or" username"?

if my posts force username, then can i log/sign in again under another user name?

 

thanks much

 

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storymonkey's picture
Replies 1
Last reply 10/30/2016 - 11:01am
Replies by: Ed Williams

hi all,

i do not see any posts on this forum about using bovine lactoferrin as an adjuvant. there are a number of papers showing indications of efficacy. i'm wondering if anyone has used it and what kind (e.g., apolactoferrin or the semi-iron-saturated kind).

studies seem to suggest that completely iron-saturated lactoferrin is best but that seems impossible to find on the consumer level. 

the kind that is in stores is bovine apo-lactoferrin (0% iron saturated) and seems more useful for infections than immune modulation according to some of the articles i found. this is one: https://www.ncbi.nlm.nih.gov/pubmed/18268518

anyways, just wanted to get this lactoferrin thing started.

btw, this is a big issue for me currently as my HMO only pays for Interferon for IIIa stage and i'm not thrilled about interferon with it's side-effects - especially since it may not actually work all that well in terms of overall survival.

thanks,

kevin

 

 

 

 

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Jango's picture
Replies 3
Last reply 10/29/2016 - 10:34pm
Replies by: debwray, Jango

Oops ! Posted before I finished. Anybody know how to edit a post ? So we are awaiting a diagnosis and in the meantime my father was in a hospital that had no oncology. I was continually disheartened by the doctors who basically kept giving my dad a grim diagnosis. He will be referred to a proper oncologist once the diagnosis is confirmed. When I was reading the discharge papers they referred to my fathers spots as masses ? How big does a spot have to be to be considered a mass ? Or is this just the terminology they use for all spots of cancer ? Has anyone here had numerous spots that were treatable ? This has to be the most incredibly stressful time waiting for diagnosis and hopefully a treatment plan. Thanks in advance !!!

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totaroswest's picture
Replies 2
Last reply 10/29/2016 - 8:10pm
Replies by: stotesbery, landlover

My husband was diagnosed in August with brain metastases. He was given steroids to reduce the swelling.  He had a ct scan done that showed some nodes in lungs and a suspicious something on his kidney. After 2 months of recovery from brain surgery he had a pet scan done and nothing lit up. The nodes in lungs and kidney are still there but they did not light up. Also initially they could not tell if the brain tumor they removed was melanoma or something else. So they sent it to Cleveland Clinic and they finally determined it was melanoma.The doctor said that when you take steroids it changes the tumor so it is hard to tell what it is. What do you all make of this?

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/29/2016 - 8:04pm

Did your surgeon remove all nodes that lit up during the lymph node mapping prior to surgery? I had my mapping done just before surgery and out of the 5 that lit if he only took 2....I'm having a hard time understanding why he wouldn't have just taken all 5?? 

 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 10/29/2016 - 5:43pm

I am a 43 year old female from Indiana who is new to this website.  I was diagnosed with melanoma on the right side of my neck near my clavicle in May 2008.  The melanoma was surgically removed in June 2008.  Since the melanoma was in very early stages, all margins were clear, and no lymph nodes were affected, it was determined by my doctor that no chemo or radiation was needed.  I have been faithful about going to my dermatologist to have yearly full body checks, blood work, and chest x-ray.  My last exam and tests were in July of this year, and once again, I was given a clean bill of health.

About a month ago, I started having some swelling on the left side of my neck and pain in the clavicle.  I went to my GP who recommended I have a chest x-ray and blood work done (even though I had just had these tests done 4 months ago).  I went for both tests and results were good.  She then scheduled me for an sonogram on the left side of my neck and chest.  Results showed no abnormalities.  My doctor wanted to run one more test so last Monday I went for a neck CT with contrast (my doctor wanted both the neck and chest scanned, but my insurance would only approve the neck).  I got the results yesterday.  Once again, nothing was found on the left side of the neck or chest where I'm having pain and swelling, but the CT scan did show 2 noncalcified pulmonary nodules (6mm and 7mm) on the top apex of my RIGHT lung.  I am now scheduled for another CT scan this coming Wed. Nov. 2 on the neck and chest.  My doctor said she is not overly concerned because 90% of lung nodules are benign, not to mention my blood work was good, but with my history of melanoma, she wants to investigate this further. 

Needless to say, I am very worried.  My paternal grandfather and my dad both died of lung cancer.  Last month, I quit smoking after 20 years (cold turkey), but now am worried it might be too late.  I've talked to my husband, mom, sister, and best friend, and they have all been very loving, encouraging, and supportive, but I just can't stop thinking this isn't going to turn out good. 

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Jango's picture
Replies 2
Last reply 10/29/2016 - 5:22pm
Replies by: Jango, debwray

Hi all, I have posted a few times on this board about my father and every time you give the most wonderful information and support. My dad was hospitalized about three weeks ago due to extreme fatigue and lack of appetite. On a ct scan they saw a mass in the abdomen as well as several spots in the abdomen and one on the lungs. They are assuming it is melanoma, as he had stage 1 three years ago and was considered cured. I am quickly finding out what a sneaky bastard mm is. He was discharged from the hospital yesterday and is much better in terms of strength and vitality and appetite. Though he need s a walker. A month ago he was perfectly fit ! He still does not have a diagnosis as they did two unsuccessful biopsies and were only able to get a sample the other day. Now we wait. 

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