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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Anonymous's picture
Anonymous
Replies 9
Last reply 9/2/2013 - 8:07am
Replies by: Tina D, Anonymous, Mat, JerryfromFauq, Janner

Hello,

For about a week, I have a pain in my posteriolateral part of the hip, which started suddenly one day and doesn't go away. It is not constantand and I feel it when walking or twisting my leg: it goes away with sitting or lying down. I am Stage 1B, 9 years post-diagnosis. I have a herniated disk but never had before such symptoms in the hip. Did someone experienced something similar?  I am scared and will appreciate any help. Thanks.

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Roxy1453's picture
Replies 6
Last reply 9/1/2013 - 3:28pm

Well....!! It's NOT melanoma! I can't believe this last week! I have been through hell and now I'm back!

Results say, mild interstitial chronic inflammation and fibrosis. Increased intraalveolar macrophages. Whatever that means!?

I go back to "talk" to the Dr next Fri.

I am so happy! Thanks for all of your thoughts and prayers. I will never give up!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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shelbug66's picture
Replies 3
Last reply 9/1/2013 - 11:04am

Brief history (I have completed a profile): Nodular melanoma in October of 2010, WLE and SNB (negative for spread).  Staged 1B.

In October of 2012, I was preparing for a complete hysterectomy, and because of the issues I was having, a CT scan was ordered, which did not show any abnormalities on my liver or lungs.  Forward to last week (August 2013), after having appendicitis symptoms, a CT scan was done which ruled out appendicits, however it found a small nodule on my liver and some type of scarring in the lower lobe of my right lung.  I did have pneumonia in that lung earlier this year, so I'm not getting to excited about that.  The liver nodule has me somewhat concerned.  It was small enough the radiologist was unable to 'characterize' it, but suggested it could be a cyst.  The doctor (who is a general practitioner) that I had to see doesn't seem concerned, but did suggest I should have another scan in 6 months to see if there are any changes.

I did meet with an oncologist after my melanoma diagnosis as a precaution, but only see my dermatologist on a regular basis now.  I'm wondering if I am being paranoid, or should I contact the oncologist about the results of this CT scan?

Shelley

Just keep swimming...Just keep swimming!!!!

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Replies by: Tina D, Jim M., Anonymous

 

Hi all, I hope everyone is doing well and in good spirits.

Quick question to everyone as my web searches have been fruitless and I've pestered my doctors to no end....

A quick refresher: Stage 1a melanoma (.82mm, no mitosis, no ulceration, Clark IV). Had SLNB on right groin with three nodes given the all clear. This occurred in early Feb. 13.

Now, the question: Since mid April both of my armpits have had a constant ache. Not a pain, just an ache. The best way to describe it is to think of holding a tennis ball under your arms. I've been to my derm and my oncologist, both of which said it isn't anything. I had an ultrasound that looked fine as well. There is nothing palpable, etc.

Has anyone else experienced this? Could this be a result of my WLE and my fluid being rerouted? I've never been one to worry about illness, but since my dx, I've become a hypochondriac. Should I keep pushing for more tests?

I had a CT scan in March when I visited MD Anderson and all was clear (expect for a 6mm nodule in my groin which they assume is an inflamed node from my surgery). Should I ask MD for another CT scan? A Pet CT?

Thanks for any input.

-Nick

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Replies by: Tina D, GAngel

Haven't updated in awhile, but we are back in TX and had my appointment with Dr. Papa this morning. Scans looked good. The spot on my liver is responding well. Smaller with less uptake on the PET.  I have been having issues with diarrhea for a few weeks now. Went to TX 6/13 and  he added Yervoy. I was already having some diarrhea then I assumed from the Zelboraf. Had Yervoy 7/3/13. Put in hospital 7/26/13 for increased diarrhea. turned out to be cdiff. Cleared all that up, but diarrhea still persists. Been on steriods since 8/1/13.  This trip he also decided not to continue Yervoy due to this.  Will have a colonoscopy to make sure it is not colitis. If not colitis, I can stop the steriods. Overall I feel blessed and optimistic that all is going well.

 

Becky

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Pink's picture
Replies 5
Last reply 8/31/2013 - 5:39pm
Replies by: Tina D, Pink, BrianP, casagrayson

After 6 years I have mets in my leg. I just had a Pet and brain MRI which were negative. I am seeing Dr. Zager at Moffitt on Monday to see my optinns. What treatments recommended at this point

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Owl's picture
Replies 3
Last reply 8/31/2013 - 5:30pm
Replies by: Tina D, bkinman, POW

Hello everybody,

my husband had scans last week and everything looks good. We are so happy! There are still some lymph nodes enhanced but nothing has increased in size and there is nothing new. He is on Zelboraf now almost  8 months, crossing the median. Side effects are still manageable though he's had a rough time with pain (joint pain and skin sensibility). Doctors recommend to stay on Z. The other option would be a break, wait for progression and enter one of the Anti-PD1 vs. Chemo trials that have also reached Germany. I think we are not really ready for it yet because Z is working so well. But we have this option in mind and will again discuss it with the doctors.

All the best, Jenny

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bj63's picture
Replies 3
Last reply 8/31/2013 - 5:28pm
Replies by: Tina D, bj63, Richard_K

Just returned from the oncologist a little while ago.  I'm in my 10th month on Zelboraf and appear to still be responding to the drug.  The tumor activity appears to have remained dormant since my scan in February and all my blood work looks normal.

For now I appear to have adjusted to the drug pretty well.  I still have the sun sensitivity and have lost most of my body hair.  Though some has started growing back, it is very sparse whereas I used to be a fairly furry critter.  I still get some random aches and pains that appear to be related to the Zelboraf but they've become fewer.

So, for now at least, thing seem to be going well.  Sometimes no news is the best news of all.

bj63

Sometimes no news is the best news!

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SBeattie's picture
Replies 14
Last reply 8/31/2013 - 5:24pm

Been reading the board since initial sx. 9/2011...scalp. breslow 2.38; no ulceration, clean nodes...2a...but mitotic rate of 10...ouch...WLE...local recurrence 2/2012...WLE, again clean nodes other side...6 wks radiation..BRAF negative...last Mon. scans (10 months from previous, can't undo that tho) showed spot in apaex, rt. lung...2.2cm by 1.2 cm...schehduled for resection this week...but I need/want systemic therapy...am in excellent health otherwise...is that an oxymoron?! anyway...followed by  oncologist, not melanoma specialist...have asked her to of course, contact a specialist...she's spoken to Dr. g Linnete (?sp) in St. Louis...is he the best specialist there? (I'm close to st. louis)...should I really get to MD Anderson...wish I could get into the ACT trial at NIH, but I assume that involves ALOT of travel...of course so would MD...but can txs be given 'from a distance'? Are there airline specials for travel? and I guess insurance doesn't cover if it's 'out of neetwork'  I understand I at least need ipi ... but would like to get a hold of nivolumab combo!!! Anyway, any input appreciated...you all are SO VERY helpful...and THANK Y OU so very very much...I've asked alot of questions!!!

SB

Sally

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NYKaren's picture
Replies 8
Last reply 8/31/2013 - 5:09pm

Hi everyone,
I just came back from the onc and all is good. I am having a pretty remarkable response to the Trafilnar, my ear, all my scalp mets, etc. are clearing up nicely. My blood work is good.
The brain mets are having the pretty standard effect, anger, etc. and I really didn't have a clue about where I was (my husband was driving) until he drove right up to the door. I know the office is going to be looking into some kind of neuro-psychologist who might help me navigate things better. My work won't clear me for at least 2 more weeks, but I know that's a good thing.
Karen

Don't Stop Believing

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Lisa - Aust's picture
Replies 12
Last reply 8/31/2013 - 5:03pm

Hi Everyone,
I visit often and luckily haven't had to post much - but unfort I have some questions! My husband Craig has been on Zelboraf for 2.5 years (complete response) - but we found out today that one of the lymph nodes he had at the beginning of the z trial has started growing again. The onc discussed merck anti PD1 as his next option. I am just looking for some info about it - stories, side effects, results etc - would love to hear from anyone experiencing it :)
Thanks so much
Lisa

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POW's picture
Replies 16
Last reply 8/31/2013 - 1:47pm
Replies by: JerryfromFauq, Anonymous, Bubbles, BrianP, becky15, nancyg, NYKaren, Cooper, POW

I want to thank JerryFromFauq for bringing this paper to our attention earlier today. I think this paper is so important that I decided to post the link again, this time using a headline in ALL CAPS!!

 The official title of the paper is mind-numbing, but the short name is "Melanoma Therapy Sequencing" which about says it all. You can read the abstract and get the full text for free at: http://www.nature.com/nrclinonc/journal/vaop/ncurrent/full/nrclinonc.2013.153.html

"Melanoma Therapy Sequencing" talks about which treatment option should be used first, second, third, etc when treating melanoma. Different treatments and different sequences of treatments are recommended depending on the patient's melanoma stage, health and mutation status. It was written by an expert panel of 30 nationally known melanoma oncologists (Kaufman, Hodi, Pavlik, Sosman, etc.) from 23 of the most prominent melanoma specialty clinics in the country including Rush, Dana Farber, Moffitt, John Wayne, etc. The expert panel only talks about treatments that are currently FDA approved (they do not recommend anti-PD1, for example) but they do often recommend clinical trials which, of course, would include anti-PD1.  

The paper is written in fairly plain English (as medical papers go) and it contains several very clear and understandable figures that summarize their recommendations. In line with our general recommendation that everyone is their own best healthcare advocate, I suggest that everyone struggling with making melanoma treatment decisions read this paper.

IMPORTANT-- It is important to note that your oncologist might not agree with these treatments or sequence of treatments for your particular case. If you read the paper, you will see that most of the time this expert panel was NOT UNANIMOUS about the recommendations. What they published was a majority opinion and they often balance that by describing why some of their colleagues disagreed. Sort of like the Supreme Court publishing both majority and minority opinions about important cases. I actually found it helpful to read both the pros and the cons. But be aware that if your doctor does not agree with these recommendations, he or she may be perfectly correct. Confusing for us, I know, but that's real life. 

 

Key words: immunotheray, IL-2, interferon, PEG, ipilimumab, vemurafenib, trametinib, dabrafenib, chemotherapy, brain mets, BRAF,  KIT, Yervoy, Zelboraf, Mekinist, clinical trials, sequence.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/31/2013 - 1:27pm
Replies by: Anonymous, cltml, Bubbles

My husband (32 years old)  was diagnosed in 2011 with Stage 3C Melanoma.  Primary tumor in leg, traveled to two lymph nodes.   After radiation and interferon treatment, he was in NED status for a year.   Then a tumor showed up on top of his head in May of this year, it was completely removed with clean margins, and at the beginning of this month was considered in NED status.

Last week his leg that he originally had surgery on was inflamed more than normal, he is use to it being swollen due to having complete lymph node removal, but he stated experiencing increased numbness that by the end of the week was having difficulty walking.  MRI results came back, and he now has a solitary brain tumor.    He JUST had an MRI and PET Scan, how on earth can this stupid disease just come back so quickly?

I knew it was going to continue to be a long hard journey when he advanced to stage 4, but I thought we had some time before it came back.  We are meeting with surgeon next week, and hopefully he will have it removed before the end of the week. 

I’ve been driving myself crazy with Google Searching on Melanoma Brain Mets, and I’m not finding much of any information on others having a single brain met.  I see that the fewer, the better the prognosis, but the prognosis overall is still not good

Anyone have any information on this?  What should we expect from here?  We haven’t seen the doctor since prior to MRI,  they called us with results (less than 24 hours from scan)  to give results and change a steroid medication to hopefully help reduce  swelling to help him walk, right now he has very little muscle control of his leg, and continues to get worse.

Radiation? Chemo?  Clinical Trial? 

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Replies by: JerryfromFauq, wpneuma

I have completed the 4 weeks of IV interferon, radiation of right leg, and am starting the self injections in a week. Does anyone have any advise as to the best time of day to administer? I want and need to work so I hope to minimize side effects.

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MonicaD's picture
Replies 25
Last reply 8/30/2013 - 2:33pm

Hi there,

After my SNB came back positive, I had surgery to remove the rest of my inguinal/groin nodes last week (Oct 18th).  I'm really worried about the prospect of lymphedema now and would love to hear from other people who have had this surgery and what your experience has been and how you've dealt with it.  I was a very active person before and I plan to be again but worry how lymphedema is going to affect my ability to hike, bike, run, etc.  So far, I still have my drain in and it's removing a lot of fluid, which feels good so I plan on requesting to keep it in as long as they'll let me.  I'm still very much in the early phase of healing so when I'm sitting or lying down, I keep my leg elevated and also try to do some gentle massage on my leg.  Is there anything else I can be doing?  What can I expect later in terms of swelling and ability to be active? 

Thanks for any info you can give me!

Monica :)

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