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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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.


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

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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 what point do the side effects wear off?  


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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!!!


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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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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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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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trojansurvivor's picture
Replies 17
Last reply 10/30/2011 - 5:01pm

I am an 8 year Melanoma stage 4 survivor, and have been in the drug trial for Yervoy for the last 6 years, and have had clear scans for 3 years.  I originally was diagnosed with stage 4 in late 2002, with tumors in my lung, spleen, liver and spine.  I had bio-chemo therapy,(dacarbazine, cisplatin, IL-2, and interferon).and went into remission for about a year, including a monthly maintenance program of low dose IL-2. After about a year, I started to have soft tissue tumors appear in my groin and upper thigh area, and had about 5 surgeries for tumor removal.  After 6 more small soft tissue tumors appeared, I began the ipilimumab trial. My only side effect was a skin rash on my stomach and back of my legs that disappeared in a couple of months. My tumors began to decrease in size dramatically, with most disappearing within a year.I had a second infusion treatment 2 years after the first treatment.  One tumor, however, began to grow larger and about 3 years ago was surgically removed.  For the last 6 years, no new tumors have appeared, and I have had clear scans for the last 3 years.  

This drug was a god sned for me and saved my life !!!

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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 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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jag's picture
Replies 14
Last reply 10/29/2011 - 7:59pm

40th MRI

All clear :)
New business going well,
wife is preggers,
I am a lucky man.

Feel guilty that things are going as well as they are honestly.

Insert Generic Inspirational Motto Here

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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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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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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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