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Replies by: mombase, Anonymous, FormerCaregiver, JerryfromFauq

An abstract of one of the presentations at

8th International Congress of The Society for Melanoma Research
November 9–11, 2011

The Pennsylvania State University College of Medicine, Hershey, PA,

PLX4032, clinically known as vemurafenib, is a V600EBRAF selective
inhibitor. It is effective in patients containing V600EBRAF protein,
leading to an ~80% partial or complete anti-tumor response rate
during the first 2 month treatment cycle. An average regression
period of 2–18 and 6.2 months progression-free survival is observed
but all patients eventually relapse developing drug resistant invasive
disease. Recurrence can be caused by secondary BRAF mutations,
alternate pathways of MAPK reactivation, or activation of compensating
alternative survival pathways. The mechanisms promoting
disease recurrence to BRAF targeting agents are an extremely
important area of research for the clinical management of melanoma,
which remains to be completely unraveled and the epigenetic
contribution to this process in unknown. Once the mechanisms are
completely elucidated, this information would be useful for designing
better approaches to prevent resistance and disease recurrence.

This study demonstrates that an acquired more invasive resistant phenotype
can occur following treatment with BRAF inhibitors by increasing
methyl transferases activity to promote epigenetic silencing of genes
regulating this process.

Vemurafenib treatment led to promoter
methylation and silencing of the invasion suppressor CD82 in
melanoma cells. Lack of CD82 in turn increased the invasive potential
of the cells, promoting migration through vessel and capillary walls,
thereby aiding development of metastases. Invasive metastatic
disease mediated by silencing of CD82 could be reversed using
5-aza-2¢-deoxycytidine (5AzaC), clinically known as decitabine, which
then decreased the invasive phenotype mediated by these agents.
These observations suggest that combining BRAF targeting with DNA
demethylating agents might be one clinically effective approach to
overcome the development of resistant invasive melanoma following
treatment with agents such as vemurafenib.

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Kosta's picture
Replies 6
Last reply 10/31/2011 - 7:13pm
Replies by: Kosta, FormerCaregiver, dearfoam, Anonymous

Hello everybody,

I have to say that this is one great place for support and information. First time posting and would like to share our experience with Dad's melanoma.
My father is 82 years old.  First biopsy came from a suspicious mole  on his right shoulder blade. Initial biopsy was done overseas (Greece) and I decided to get on the next flight out and bring him to NY. Thank God I did. Initial results in Greece showed 1.5mm on the primary tumor thickness. The same film brought to NYU was diagnosed as 6mm. immediately our Doctors at NYU called for PET/CT followed with lympadenectomy on May 24th The plan was to also start radiation therapy a couple of weeks later over the area  of the surgery to prevent any metastasis. A week after radiation therapy started my father started complaining about lower back pain. A few days later it was almost impossible to get him on the radiation table even though he was on oxycontin.

By late June and after an MRI that showed metastasis to his spine. His higher dose of oxycontin (12h) and oxycodone (4h) had caused changes in his persona. For example, lethargic and sleepy and even going to the rest room was a huge task (severe constipation) and frequency in urination. We decided to go for a second opinion/consult with Dr. Francis Arena in Long Island. Dr. Arena wasted no time to communicate with Dr. Ott at NYU and both agreed it was necessary to start radiation therapy on his back to relieve the pain. After ten sessions and because of time constraints with the start of the clinical trial of Zelboraf that we had matched we had great success with in controlling his pain and getting completely off oxycontin by the time we started Zelboraf.

Two and a half cycles of Zelboraf nd with minor adverse reactions we were scheduled for PET/CT and MRI of the spine. The results? Devastating. new mets and old mets had grown. We were told that Zelboraf had stopped working. I don't know if he had ever reacted to it. We stopped Zelboraf two weeks ago and were told by NYU to start on temodar. I again called Dr Arena and requested another consult because my father by now was ready to throw in the towel and requesting to bring him back to Greece for his last days. I know it’s his wish but I can not give up hope yet. Dr. Arena also build on our hopes and my father is ready to start on his first infusion of Yervoy Wednesday Nov. 2nd. We are looking and praying for some positive developments because we are back on oxycontin and the pain under his right arm is excruciating. I hate seeing anybody in pain but I can't express my pain seeing my DAD in this condition.


Love and Hope to all of you and yours...Kosta








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jaredmiller16's picture
Replies 5
Last reply 10/31/2011 - 2:34am

I am leaving for Afghanistan soon and was wondering if I could ask you a few questions that I have. My last derm appt really bothered me.


As some may know, I had a mother pass away from melanoma (stage I to stage 4 case) a few years ago and I recently have been diagnosed with stage I melanoma.

I recently went back to the derm to have another mole check up before I leave for Afghanistan.

He was not available, but had a PA check me out. She wanted to remove 10 moles. That seemed like a lot, especially since I know most of these have not changed. Don't get me wrong, they look weird, but all my moles do. I asked her if this was preventative care because I was leaving the country for a year and she said "no." She feels that is important in my case to remove not only melanoma, but moles that could be melanoma. How do you feel about this? I am VERY good about checking my moles, I know I missed the actual melanoma, but it was one of the few moles that I cannot check as easy, but most of the moles she wants to remove are in places I can monitor. But am I making a mistake?

She asked about a pink patch a skin I had on my back. I told her I had a mole removed (shave biopsy) in that very place exactly a year ago. The derm was not suspicious of melanoma, but the mole itself was huge (raised, and 7MMx7MM) and it was in a place where it would rub against my gear. Therefore, he took it off. Came back normal. The red patch is within that place where the mole was. When I told her this, she quickly dismissed it, but now, after reading all the info packets she gave me, I am worried this could be a case of amelanotic melanoma. In the info packet, it stated to remove any sore that has not healed. That was my first shave biopsy, should some places still be red after a year?

Lastly, I talked to her about preventing a recurrence like my mom. She said there is nothing I can do, but talk to my doctor about taking an asprin a day. Recent studies have shown that this could prevent melanoma. Is there anyone doing this? Sounds odd?

I would love to know your thoughts. Jared

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nickmac56's picture
Replies 8
Last reply 10/30/2011 - 11:12pm
Replies by: jag, nickmac56, deardad, NYKaren, CarolA, jax2007gxp, Gene_S, Anonymous

Melanoma presents in nasty and unpredictable ways. Yesterday my wife had severe headache and it couldn't be controlled through pain meds, especially when she became nauseous. When you are multi-symptomatic and have multiple areas of cancer involvement and treatment its really hard to figure out cause and effect. Eventually I got her to ER, where a CT scan revealed overly large ventricles due to excess spinal fluid - water on the brain. After a horrible pain filled evening she's now resting and the pain is under control through IV drip.

So our Sunday now turns to how to relieve the pressure (lumbar tap?), what is causing it (cancer cells in spinal fluid, one of her new tumors?), and how to address (different chemo, direct chemo to spinal fluid, shunt to drain fluid). Difficult issues the neurosurgeon, neurologist and oncologist will tackle. Its complicated by her low blood counts from chemo.

An ugly turn of events.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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LynnLuc's picture
Replies 7
Last reply 11/1/2011 - 6:02am

Tomorrow I will got to Moffitt for the first derm appointment since a year before I was diagnosed as stage 4...the last "outside" melanoma was removed in 2000. I am also getting an ultrasound to check out a cyst on my adrenals which they feel is probably "nothing" and related to the Anti PD-1...which also blew out my thyroid...oh well such small price to pay to be NED.

I go Dec 14 for my 4th booster  of Anti-PD-1 ,scans and see Dr Weber.-Lynn  angel

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

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deardad's picture
Replies 3
Last reply 10/30/2011 - 2:53pm

Hi just want ask you all for your opinion.

Recently my dad saw his neurosurgeon who told him that his latest MRI (after 4 months) was clear (hooray). He also asked if dad was going to have radiation. Apparently the neurosurgeon and the oncologist work independent of each other so he was not aware that my dad was on vemurafenib. When on a trial can you have WBR? Does anyone think it's worth considering? Do we have any evidence that vermurafenib crosses the blood brain barrier?

 I know that we are in a good place at the moment and I am so grateful, I just want dad to have access to something more durable while the disease is at bay (so to speak). I don't think you can move onto anything else until the disease progresses.

Thanks in advance

Nahmi from Melbourne

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azurliene's picture
Replies 6
Last reply 10/29/2011 - 11:05pm

My dad was just diagnosed w/ Melanoma that has metastized to the brain. Long story short, they cannot find Melanoma in any other part of his body. He had two tumors in his brain, one was removed 2 weeks ago via craniotomy revealing that it was in fact metastized melanoma. The dilemma right now is how to best deal with the remaining (known) tumor. It is approx 2.5x3...we are meeting with a series of Drs and his neurosurgeon this week, but it seems the options are a 2nd craniotomy followed by Gamma Knife and/or WBR or WBR (they want to shrink before GK?) and then Gamma Knife in place of the craniotomy.

This tumor is on the RT side, near a blood vessel - the neurosurgeon feels he can remove but of course stated the risks again. This being said he feels surgery 1st would be the best route. (his recovery from the first one was amazing) The radiation docs on the other hand say why risk the surgery risks when you could just do WBR and Gamma Knife. They are reviewing together with a tumor board before giving us their final recommendation, but in the meantime I am researching like crazy and would love to hear opinions if anyone has been in a similar dilemma.

I hate the risks of surgery and there is a chance they would not be able to get all of the tumor with it being adjacent to a blood vessel, but I just want it out and I guess my concern with going the gamma knife/WBR route is if the tumor didn't take to the radiation, we would be left with less time, scar tissue making a craniotomy more difficult and  the chance of the tumor (or another) growing.

Help! Thoughts? Also, we are at Barnes Jewish Hospital ST. Louis/Siteman but would love to hear recommendations re: hospitals best for melanoma in the bran too...

Thanks for any help - I really appreciate it!!!


Also, I created this blog for my dad in case you want more details re: his case...

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nickmac56's picture
Replies 4
Last reply 10/29/2011 - 7:44pm
Replies by: NYKaren, Fen, King, mombase

it's kind of funny how you can get so used to bad news, that something like two small brain tumors is kind of a relief. The scans tody showed that all 7 previously treated tumors are melting - but there were two new ones. It could have been much worse - like a whole bunch of them and then we'd have the whole brain radiation discussion. But "only" two. "Scan and zap" said my wife - so yes, next week she has Cyberknife on them. Ain't technology grand?

So it seems that nothwitsstanding active CNS disease - the brain part is being controlled. That just leaves the uncontrolled spinal involvement  - so at least we can concentrate our efforts.


Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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ValinMtl's picture
Replies 4
Last reply 10/31/2011 - 6:26am
Replies by: MariaH, momof2kids, NYKaren, King

I go back to NIH next Tuesday for another visit after the TIL treatment with TBI which was done in mid-August.  My first visit held wonderful results for me at the end of September but I am dreading this one.  The first time around I had a tremendous amount of volume (length x wides for each lesion tallied together = 62% .

I still have the weight loss from TBI which is not surprising...currrently lost 30% and still not able to hold much down but that is not the worry.  I see an significant increase in visual growth...many many under the skin and grey plus several 'black' spots.  I'm very very worried.  Has anybody heard of increase like this ...if anybody has thoughts on this I would be gratefully appreciative.  I have tried ipi (partial) now TIL...doesn't look like there is too much else out there.  Val

Live Laugh Love Nothing is worth more than this day!

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jax2007gxp's picture
Replies 5
Last reply 10/29/2011 - 1:36am

Hey all....thanks for all of the positive thoughts, feedback, and discussion from my earlier thread.  So here's the latest....the mel is all over the place...brain mets, lung mets, liver mets, spleen mets, spinal bone mets (waiting to get path on fluid but we are hopeful), tumor in chest, and lymph nodes in left groin and abdomen are suspect.  The good news...because I was so DILIGENT and refused to IGNORE what I knew wasn't right in my body, much of the mets is very small  (1-2mm).  From what I can tell, this is definitely a better place to start treatment from than months down the road!'s the plan....(fyi - I was just released from hospital 10/27)

10/28 - Met with WBR clinic near home...starting 10 treatments WBR today...they are even scheduling a special appt for me tomorrow (sat) to get my second dose in quickly

Once we complete the WBR, Gamma Knife will be employed at Hoag Memorial in Long Beach with Dr. Lindskey and Dr. Kuo.  They anticipate having 2 -3 tumors left to attack post-WBR (remember most of the 8-11 brain mets are <2mm currently).

In the meantime, med onc is still working on the chemo solution which is still leaning toward Yervoy as soon as I recover from radiation.  The doctors I am working with (Dr. S, Dr. J, and Dr. F) do not seem to be afraid to refer me out to a clinical trial they believe would be beneficial.  The major concern we have briefly discussed is a lack of caregiver if I leave So Cal (except if I go to Indianapolis).

In answer to some personal questions which have been batted around about me....I am a 40-year old female with limited family support beyond my 74 year-old father in So Cal and a 55 year-old sister in Indy.  I have spent my life being generally healthy and active, hiking 10-15 miles a week as recently as a few weeks before my July 2011 recurrence.  The one theme I continue to hear from my team is about my ATTITUDE!  I am going to kick the crap out of thisbastard!  I have lived a wonderful life and will continue to do so for some time to come.  I have been blessed with the people in my life, the experiences I have been afforded, and more than anything my own sense of personal awareness, responsibility and spirituality.

I appreciate all of you being out there in cyberland and I hope I can offer you similar hope as I progress in this journey!


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lizzykittycat's picture
Replies 5
Last reply 10/31/2011 - 4:28am
Replies by: JerryfromFauq, Jim M., Gene_S, Anonymous


i was wondering if anyone has paired any homeopathy with their conventional melanoma treatment?  i am currently seeing a homeopath and taking about 14 remedies daily.  with my 3a diagnosis, i decided to try and arm myself in ANY way possible.

also... does anyone have any suggestions for good books that i could consult as far as dealing with a melanoma diagnosis?

thanks in advance.


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Lisa13's picture
Replies 4
Last reply 10/29/2011 - 12:12am

A few days ago, the left side of my neck seemed slightly puffy and felt stiff from my jaw all the way down. It all went away and then I went to my surgical oncologist today and she said the left side of my neck felt fuller and there is a slight lymph node that is swollen. She said it was hard to know what it was because of treatment and could be an inflammatory response, but she's not that familiar with ipi.  She also said it would be odd for it to be melanoma because of where my cancer is and something about lymph node basins.  I told her melanoma could spread anywhere and she said this particular spot would be strange (she's a melanoma surgical oncologist).

Anyway, I don't know what to make out of any of this and have scans on Monday. Does anybody know if inflammation is possible with Yervoy?  After my 4th infusion (2 weeks ago), everything went wild a few days after - massive itching, upset stomach which was relieved by immodium and now this weirdness in my neck area.  My bloodwork was great 2 weeks ago, so I really don't know what to even imagine right now.  Maybe I'm having glandular reactions or something like that?  Or, maybe it's the sinus problems I've been experiencing- sinus pain, congestion, that it could be related to.


Many impossible things have been accomplished for those who refuse to quit

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NYKaren's picture
Replies 10
Last reply 11/2/2011 - 2:37am


Hi everyone,

I had brain MRI (all is fine) and CT of chest, abdomen & pelvis.  PET is scheduled for Monday a.m.

I requested copy of CT results and I'm a little worried:

Lungs:    Subcentimeter nodule at the right lung base is stable.  No new pulmonary nodules have developed.  Huh?

Pleura/Pericardium:  Stable posterior pleural thickening. Thoracic Nodes:  Stable 0.7 x 0.6 cm left cupraclavicular node.  Subcentimeter nodes are unchanged.  No developing adenopathy. 

As mentioned, I am having PET on Monday followed by visit w/Wolchuk on Thursday, I'm just trying to avoid being a nervous wreck all weekend.


Have a good one,


Don't Stop Believing

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nickmac56's picture
Replies 3
Last reply 10/29/2011 - 10:52pm
Replies by: BethA, o2bcheri, mombase

After discussing the pros and cons of a spinal tap for further diagnosis my wife decided to go with the docs recommendation and not do it. Even if the tap confirmed the melanoma was in there, it would not alter the treatment protcol she is on - which is a last gasp effort anyway. The chemo she is on, Abraxane, is one he really wants to have given a good shot at slowing or halting the melanoma overall. As it is, her blood counts were down yesterday, so she was only able to get a 1/2 a dose. The idea of doing a direct port into her spinal fluid (Ommaya reservoir) was discussed but quickly dropped.

She's doing relativley well on the Abraxane; fatigue and unsteadiness being the main side effects. Of course she wanted to know if the 1/2 dose would affect her hair loss - the doc wasn't too sure it would (i.e., he thinks it will still occur on schedule). 

What this all means for her symptoms is that we stay focused on treating the pain as best we can, while hoping the chemo has some effect. Her arm and shoulder pain are being well managed by the gabapentin (nerve pain reduction med) and increased steroids. Her lower back has really started hurting quite a bit more over the last several days. Unfortunately where she indicates it hurts, is in an area she has had tomotherapy radiation, and there can be no further treatment there. So it's pointless to scan to see if it's more cancer. He said it's possible the radiation is still working and could reduce the spinal tumors there - I think that's unlikely as it has been six week since the conclusion of the tomotherapy. So he's upped the dose of gabapantin and added another anti-inflammatory and pain med. We are still in the pre-morphine zone, so that's good, but if the chemo doesn't work that is where we are headed.

To top a lousy week off, today she has a brain MRI and we meet with radiation oncologist to discuss results and game plan. 


Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Harry in Fair Oaks's picture
Replies 8
Last reply 10/28/2011 - 3:09pm

I'm well into the 6th month of the GSK BRAF/MEK study, taking the highest dosages of the 2 drug combo.  I'm happy to report that, as of the scans I had on Monday, all mets have either shrunk to sub-clinical size (i.e. cannot be imaged by MRI or CT) or (in the case of a couple of bone mets) seem stable.  The bone mets may actually be non-viable, but the damage they previously caused will probably always show on the scans.

Very few side effects to report - most went away after the 1st few weeks.  Apparently the BRAF/MEK combo results in fewer patient complaints than the BRAF alone.  And according to staff at the Angeles Clinic, so far they have not seen the dreaded acquired resistance to the combo inhibitors (that has been a problem with BRAF alone).

Best wishes,


Too ugly to die!

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