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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cwu's picture
Replies 12
Last reply 10/31/2011 - 8:08pm

My father is going to get his third dose of Yervoy next Monday and so far it is so hard to remain hopeful this will work for him.  He has had side effects, some diarrhea, rash, chills, and major itchiness.  One of the reasons that it is so hard to maintain hope is because his lesions are cuteaneous, they are on his skin and we can see them.  Since starting Yervoy, he had a couple of lesions have dried up and fallen off but so far, they seem to multiply and get bigger every day.  They are also starting to move up his upper thigh area.  His leg is imflammed and swollen.  His oncologist warned us that while on the med, his lesions could get worse before they get better but it is so hard to have hope when all we see are lesions getting worse. My father gets depressed because he sees them getting worse.  Sometimes, I wish they were internal instead so we dont see them until the scans.  I try to focus on his ALC #s to keep my hopes up since they have gone from 1.58 to 1.98 after his first dose. I also read and re-read Vermont Donna's postings when I am down since she had cuteaneous lesions and is a complete responder.   

Chau

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Hi, I am new to the forum.  I have Stage 4 melanoma, and I am on my second go round with Yervoy.  I am getting more tumors, but the one causing the most trouble is in my stomach/intestine.  It is next to my aorta and vena cava, and the surgeon says it is risky to take out, but if he doesn't I could have complete blockage.  Has anyone else had this problem?

I am scared and angry.  I have had melanoma for 2 years, and have had so many problems.  I am getting tired of fighting.  The thought of peritonitis from a exploding bowel is not the way I want to go, however.

Thanks!!!

Every day is a miracle.

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Hi, I am new to the forum.  I have Stage 4 melanoma, and I am on my second go round with Yervoy.  I am getting more tumors, but the one causing the most trouble is in my stomach/intestine.  It is next to my aorta and vena cava, and the surgeon says it is risky to take out, but if he doesn't I could have complete blockage.  Has anyone else had this problem?

I am scared and angry.  I have had melanoma for 2 years, and have had so many problems.  I am getting tired of fighting.  The thought of peritonitis from a exploding bowel is not the way I want to go, however.

Thanks!!!

Every day is a miracle.

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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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AlisonC's picture
Replies 10
Last reply 10/31/2011 - 7:07pm
Replies by: mombase, azurliene, jag, lhaley, Anonymous, shellebrownies

Hi MPIP people,

I used to spend a lot of time here ( started trying to have a baby and it was easier to get some mel distance) but had hoped to return later this month to announce 10 years NED (which still might happen if my insurance company stops trying to dodge the scan fee and it goes ahead). Instead, I'm back looking for information on post-surgery options for a good friend and colleague who this week progressed to stage IV with 3 brain mets. He had a large primary (not sure of breslow) removed from his scalp and bilateral neck dissections for micro mets 2 years ago. GM-CSF since. Just this week, 3 small brain mets detected after sudden nausea and pain. No visceral mets according to the PET so they will resect 2 of the mets and do SRS (I believe) on the 3rd.

I'm so out of the loop on adjuvant treatments for stage IV Mel (which I promised myself I would never do....even after 10 years I am not complacent since my own stage III met came 9 years after my primary) so any advice you have on post-surgery options would be very welcome. Any positive outcome stories would also be very welcome I'm sure, to give him some all-important hope.....

Sorry to "take" when I haven't been "giving" on this board much of late.........

AlisonC
NED since 2001

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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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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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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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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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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!!!

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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