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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AlanM's picture
Replies 1
Last reply 10/31/2011 - 3:08pm
Replies by: Anonymous

I was on Prednisone for over a month to control Colitis related to my second infusion of Yervoy. After a hospital stay for intervention to finally put a stop to it, I was slowly tapered off. Then, a little over a week after my final dose the symptoms returned. I was put on medra-pack but as that tapered off , again the symptoms returned and was told on Saturday to use 40mg of prednisone a day. This amount appears to be holding things stable (during my last episode I was up to 100mg before being brought into the hospital!) My question is....has anyone else experienced these sequential bouts with Colitis as are result of ipi? And if so, how long can I expect this to last? I am already about 2 months out from my last infusion......at what point do the side effects wear off?  

Alan

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jax2007gxp's picture
Replies 3
Last reply 10/31/2011 - 1:11pm
Replies by: lhaley, jax2007gxp, Anonymous

It's still a bit too early to call the doc's, so I thought I'd check with anyone out here...the last couple of days I've had what I would consider regular aches and pains associated with "taking it easy" and "lettting the radiation kick mel's butt".  Basically, just the occassional discomfort from moving and such.  Well, overnight I feel like both of my knees have been attacked by arthritis!  I can barely stand up and I am hurting just lying on the couch with my feet elevated.  This is new to me so I don't know if I should try heat or ice....take an OTC (nothing has been prescribed for pain or taken off limits).  Any ideas for relief until I can talk to the doc's office is appreciated!!!

Jacki

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MariaH's picture
Replies 8
Last reply 11/1/2011 - 4:53pm

Dave is getting his Temodar delivered on Tuesday.  He does not want to start it until Friday so that he can wean off the steroids a little more prior to starting it.  He's currently at a 30mg dose of prednisone.  They have given him scripts for Compazine (nausea) and Bactrium (anti-biotic) to prevent pneumonia.

His dosing will be 160mg a day for 42 days, then a week off.  His oncologist is scanning at the end of each round.

Anybody out there have experience with this type of treatment?  Personal experience with side effects would be much appreciated.  Of course, he wants to work during the treatment if possible.  I'm just wondering if that will be realisitic.

Thank you for all your input,

 

Maria

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nickmac56's picture
Replies 7
Last reply 10/31/2011 - 4:10pm

My wife's hydrocephalus is caused by melanoma cells in the spinal fluid accumulating at the base of the brain, and clogging up the pathways the spinal fluid travels. The radiation oncologist described it as snow - a light dusting - but enough to prevent the fluid from draining. Since it's produced in the brain, if you plug up the drain - it's going to expand and press the brain - causing her headaches, nausea and instability. So they want to use whole brain radiation to try to melt that snow away. The radiation onc isn't concerned about the two solid mass tumors right now - they might get handled by the whole brain or she will spot treat them later. She is thinking twenty treatments, daily. Low and slow. In the interim, she is going to talk with the neurosurgeon tomorrow, and discuss a shunt to drain away the excess spinal fluid, thus relieving my wife of the headaches. But where to put that fluid is the question. If it's filled with melanoma cells, probably don't want to dump it in the liver or other part of the body. If it is expelled outside the body there is a risk of infection. So that is a big discussion tomorrow. 

They don't think a lumbar tap is in order as a relief valve because of the chance of a pressure differential and if the brain "drops" as a result that would not be a good thing. 

What is still unknown is how to address spinal fluid cancer. The whole brain radiation will melt away the cancer sitting in the pathways clogging things up. But the free floating cells are an issue. If it can't be handled the same thing will happen again soon - and we only get one shot at whole brain radiation. So what chemo to do and how - continue the intravenous Abraxane or switch chemo and pump it direct into spinal fluid through the shunt or Ommaya reservoir to the ventricles? The evidence is not clear on what choice should be made.

We have a great medical team. The radiation oncologist  - our regular one who we just saw Friday for the brain MRI - came into the office to look at the CT scans and review the Friday MRI in depth with the radiologist  - and called me Sunday afternoon. She's a rock star. Apparently we are getting one of the top neurosurgeons in the Northwest. We already love our oncology team (we had the on call doc this weekend and he was terrific). Unfortunately my wife is in no position to understand or participate in discussions about treatment. So I have to use my best judgment, based on our prior discussions.

Nick

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

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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 Thorocotomy...now "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!!!

Aften

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

http://earlstrieker.blogspot.com/

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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.

Nick

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 improvement...total 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!

So....here'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!

Jacki

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

hello,

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.

~liz~

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