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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ockelly's picture
Replies 6
Last reply 1/13/2011 - 2:24pm

My husband TJ was dx with Stage 3b MM (amelanotic with unknown primary) in Nov.  We are waiting to hear

if he qualifies for the GSK DERMA clinical trail.  The process is taking much longer than expected.  We plan to 

start Interferon if he does not qualify.  Wondering what the optimal time frame is to start?  I thought I had heard

approx 70 days post dx (or maybe post op??).  He had the node removed on 11/4 and parotidectomy and SLND on 12/2.

Thanks 

Kelly

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himynameiskevin's picture
Replies 8
Last reply 1/12/2011 - 9:51pm

The snowstorms actually have my flights canceled and I'm stuck in the Dallas Airport overnight. It's cold, uncomfortable, a little lonely... but a perfect time to check up and say hello to all of you.

It's been a couple weeks, did my best to enjoy the holidays, focus on the positive and live a life not revolving around this situation. And I've been doing well. I think I recovered great from the "ACT". The papers they gave me said I might be pretty fatigued for a month or so, but after three days home, and finally keeping food down and eating a lot of it... I've felt pretty good. Actually the best I've felt since August probably.  I'm back at work and am doing all the normal things I did before all of this. My weight is back to normal and now if my hair would just grow back, I'd be golden. :)

Anyway, they've got me coming back to the NIH once a month for six months for scans to see what's going on inside of me. Hopefully I can get a couple hours of sleep here on the floor before my plane leaves tomorrow at 7am, and if that flight's not canceled I should make it to DC just in time to catch the shuttle which will get me the the NIH just in time to check in and make my way over to the MRI and CTscan area just in time to fill up on the fruity contrast drinks. mmmmm. It's going to be close. Then Thursday morning I have to do aphresis before the doctors meet with me. Then we talk, and that will be the first of hopefully a few big positive definitive moments. I'm not necessarily overly worried or exited about with they will say, but I am concerned and interested if that makes sense. I know I'm in good hands there and know they're doing what they can to help. Which does a lot to ease the mind. So we'll see how this goes. I'll let you all know. 

Here's to a cold night in a strange airport. Where's the light switch?

Goodnight all. :)

-Kevin
 

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JenM's picture
Replies 4
Last reply 1/12/2011 - 9:39pm
Replies by: BethA in VA, King, Fen, lhaley

Hi all,
Happy New Year to all! Have not been on in a long time...just wanted to give an update. Back in June 2010 found out melanoma spread to my left breast. Shopped around for a treatment either standard or clinical trial. Had decided on clinical trial and as I was getting worked up for that found out that I had 3 lesions in my brain (4mm, 4mm, & 8mm). Pretty devastated to say the least. Had Gamma Knife surgery and started chemo-Cisplatnium, Vinblastine & Temodar. Added on Nexavar several weeks later. Completed 4 cycles of the chemo and could not tolerate anymore-extreme nausea & vomiting. Lost at least 20 pounds...a lot for me..I only started @ about 120. Kept vomiting for weeks and weeks after completing chemo and Nexavar. Had a partial response to the treatment but that lasted for about 2 months Scan in October 2010 showed disease increased again in left breast and right axillary nodes. MRI of brain showed stable lesions. In a lot of pain....3 pain meds-morphine, lyrica and fentanyl patch.

Started to shop around for a clinical trial and settled on GSK BRAF inhibitor at NYU in New York City w/ Dr. Anna Pavlick (love her!) definitely could not do anything too intense like IL2.....was too weak. Began trial drug on Nov.16. PET/CT prior to study showed spread of melanoma to many areas of skeletal system, innumerable pulmonary nodules, left pleural effusion, portoacaval lymph node, metastatic ascites and lesion in spleen. Within 2 weeks was off the morphine and lyrica. Generally just felt better by the end of Nov. In Dec, about 3 weeks into study started to be nauseous and vomit again. Doc got scared and ordered PET/CT from head to toe. My LDH was 1010. She did not like the number and had never seen anyone throw up on the drug ( although had to be reported by other sites b/c vomiting listed in the consent form).

Surprise, surprise....scan result showed interval decrease of disease in left breast and right axillary nodes. Some pulmonary nodules decreased, some stable. Resolution of left pleural effusion. Complete resolution of metastatic ascites. Portoacaval lymph node not seen on this exam. Lesion in spleen was less seen. Some bony lesions did get larger, but some decreased and some remain the same. Overall....a good scan result just 3 weeks in. Also, I have many black cutaneous lesions covering the entire left breast. Majority of lesions are significantly either smaller or the black color of the lesions is less black. Still a lot to get through but looks much better. Nausea & vomiting resolved by adding on Reglan (anti-nausea drug)

So, looks like I'm a responder....but for how long? That's the billion dollar question! Stay tuned....

Oh yeah for those on fentanyl patches or other type of narcotics, please never stop them all at once like I did ( in my defense, my pain doc did not tell me this and should have!). I have been going thru withdrawal symptoms which in a word are AWFUL. Back on the patch just to begin the weaning process. Praying for all of you out there fighting.....keep fighting.

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Gracie's picture
Replies 5
Last reply 1/12/2011 - 4:08pm

 On Dec. 15th, I received my 5th dose, 1st of maintenance, of Ipi or placibo with minimal if any side effects up to this point. On Dec. 23 I woke up with a rash behind my ears.  I stopped using any lotion or perfume and within three days, had a raised, welt- like rash around my neck and shoulders. I use hydrocortizone cream with little relief.  It has not changed in 10 days.  It itches if I touch it.  I can't think of anything that could have caused the rash.  I have appt. with Oncologist on Wed the 5th. Has anyone experienced small welts in the form of a rash due to Ipi treatment?  Is it unusual to have rash around neck and shoulders? 

Gracie, 3b

cancer is in my life, but is NOT my life

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Sherron's picture
Replies 4
Last reply 1/12/2011 - 11:48am
Replies by: Lori C, Sherron, Linda J, JenC

Haven't heard from you in a while...How are things going?

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Anonymous's picture
Replies 3
Last reply 1/11/2011 - 11:15pm
Replies by: JakeinNY, Fen, Janner

Hi,

I'm looking for some reassurance. I am stage 3a, NED 3 years (almost)...I've been experiencing horrible bouts of dizziness lately, so bad that I can't drive at times. My family doc thinks its an inner ear infection (no symptoms of this present) and that I'm experiencing vertigo. I want to trust that is all that it is, but...you know how it is....is this something I should see my oncologist about?

 

Thanks for your responses.

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Becky's picture
Replies 2
Last reply 1/11/2011 - 10:48pm
Replies by: Becky, Janner

Ok so even though its been 18 months, I still pour over my sons pathology report like I may find out something new...probaby the same reason I over-google and read the same articles over and over and over (neurotic mom?).

My question is, what is the difference between surgical pathology and immunohistochemistry ? One looks at the actual tumor and one the slides? Which would be more accurate?

Sons case was so unusual that it was send to 3 pathologists so I am just wondering...

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Kmazz99's picture
Replies 12
Last reply 1/11/2011 - 7:13pm
Replies by: Kmazz99, dian in spokane, lhaley, Anonymous

Hi everyone. Im new here. In Nov of 2008 I was diagnosed with Melanoma (on my abdomen). I'll make the long story short. Had the wide excision and dissection of the inguinal node. Pathology on that was fine. recently had some pains in left breast so I had a diagnostic mammogram. They found no mass etc in the breasts but did find Bilateral Axillary Adenopathy. They requested ultrasounds of those areas. They said the nodes are palpable and large but as of now not certain whats infecting them. Do you think its possible that after these two years of being "ok"...this is back or there is a possibility? I am scared. I am not set for u/s until late next week and with results after that, feels like forever to wait. Just curious if anyone can tell me if theyve had experience with this. That would be quite a spread to both armpits. But I have had issues in my left armpit since about 2 months after surgery in Jan 2009. From a rash that they couldnt diagnose or fix with topicals etc. to now being a non itching patch of discolored skin about 3" by 1" in size. Please help. Karen

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emilypen's picture
Replies 3
Last reply 1/11/2011 - 7:07pm
Replies by: EricNJill, emilypen, Anonymous

Hi All,

My husband is on a trial of GSK MEk and P13k inhibitors and after 4 months he's developed a full body rash ( dermatitus) that is incredibly itchy.

They tried cortisone cream - didn't do much.

Now they have him on oral antibiotics and an antibiotic cream. Wondering if anyone else out has developed the rash and exactly what they're using to deal with it.

Wouldn't be so bad if it wasn't itchy! :-)

thanks in advance.

 

Emily

 

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Here is a link to the Immunotherapy and Vaccines webinar with Dr Jedd W at Sloan Kettering from has last night

http://www.melanomaintl.org/news/Webinarx_Vaccines.html   if anyone wants to watch it

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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JerryfromFauq's picture
Replies 26
Last reply 1/10/2011 - 11:26pm

I made it safely back to Virginia (luckily) and finally got my Oct 1st scan that Dr Call in Colorado played games and delayed.  Dr Weiss (UVA) did his normal workup on 20 December and gave me his normal smile (especially after seeing my horse accident pictures).  He then told me that the radiology report said absolutely no growth in the innumerable tumors and also no new tumors.  Now to follow up with my PCP for lingering items from the accident and to see my dentist extra.  Dentist said that he cannot currently make me a lower plate because my upper and lower jaws do not line up enough for the jaw teeth to mate!  Oh well, I did learn a way to lose weight. 
(Lost 40 pounds, now weigh less than when I was active in the Marine Corps.  Don't don't recommend losing weight this way!

JerryfromFauq Stage IV since March 2007.

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

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Hi,

I'm looking for some reassurance. I am stage 3a, NED 3 years (almost)...I've been experiencing horrible bouts of dizziness lately, so bad that I can't drive at times. My family doc thinks its an inner ear infection (no symptoms of this present) and that I'm experiencing vertigo. I want to trust that is all that it is, but...you know how it is....is this something I should see my oncologist about?

 

Thanks for your responses.

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kinthai82's picture
Replies 1
Last reply 1/10/2011 - 7:45pm
Replies by: kinthai82

 

Happy New Year!

My name is Cynthia Chen. I am a medical student in California and will be graduating in May of 2011. I have long been an advocate of raising awareness, fundraising, and research for melanoma.

I, along with one of my classmates, would like to create a video on melanoma awareness.  We want to recruit several people to put in the video who are either melanoma survivors or friends/family members who have lost someone to melanoma.

We are located in the Orange County and people from Los Angeles, San Bernardino, Riverside counties are welcome! 

If interested, please contact me via this post, email (cynthiaLchen@gmail.com), or call me at 510-717-9782, and I will provide more details.

Thank you for your time! We will win the fight against this awful cancer!

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Amy Busby's picture
Replies 13
Last reply 1/10/2011 - 6:40pm

I've always had a bunch of subq mets, most in the visceral tissues but some you could feel under the surface.  Now I've had a few come up with bruises on the skin above them.  Wow!  Did the appear so fast they "punched" a bruise on my skin?

Weird.

Sure tumors are progressing based on the pain level progression and the new ones I can feel here and there.  Scans tomorrow and meet with ipi onc in San Antonio on the 14th.

Update to follow!  Sorry I have not been around much.  Fatigue is high.  Too much activity each day to fit into my very limited energy reserve.

But I think of you all and pray regularly.

If there are any viable last line options out there, give me a head's up.  I know my LMD makes everything a fight and I don't know how big the guns I'd be able to bring are.

love,

Amy

 

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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vivian's picture
Replies 3
Last reply 1/10/2011 - 11:33am
Replies by: vivian, 2atlascedars, akls

Hello All,

I am relatively new to this forum, but I have spent so much time reading your posts, I feel like you have already helped me enormously.  So here's the deal:  I was diagnosed in early November with amelonic nodular melanoma, Breslow 4.35, Clarke level 5, mitotic rate 9mm, non-brisk lymphocytes. Apparently the melanoma developed very rapidly because two previous biopsies in September were negative for cancer.  The lesion was on the mid left back. It looked like a cyst, not ugly or anything suspicious, but boy did it itch.   In mid-November I had the wide excision and SNB, which was positive for one of two nodes.  Pet/CT were clear and the LND three weeks ago was also 10 of 10 negative for melanoma.  I am counting my blessings, of course, to be 3a and NED, but (and this is the crazy part), four days before the LND, I had an acute appendix and something called a necrotic appendix epiploica.  The lab work on that was clear for "cancer", although I am not sure they specifically looked for melanoma.  Doesn't it seem a little coincidental that a 60 year old woman would have an appendicitis in the middle of all this?  And now, the  two month old scar from the wide excision has started to itch like crazy.  Hmmm...

I know it is probable/possible that neither of these things means anything, but since melanoma is my second cancer (2002 myelodysplastic syndrome, stem cell transplant, total remission), I am really skittish.  Truly, right before the melanoma diagnosis, I had just gotten over thinking every little thing was a return of the MDS.  Of course I will mention the itching to the oncologist, dermatologist and surgeon, but meanwhile, does anyone out there have any stories of  emergency surgeries or itching scars unrelated to melanoma?  (Funny stories always appreciated!) Should I push for further testing?

Thanks, friends!

Vivian

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