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.

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Hi all,

Just wondering if anyone has experienced pain in/around tumour sites as th tumours are shrinking?

My husband is on Mek/PI3k trial that we know has worked ( over 15% shrinkage so far). He recently had to stop taking the drugs so a side effect could clear up and when he started back on the drugs about a week into treatment he started to get aches and pain in the areas the cancer has invaded.

This happened when he first started the drugs months ago and then gradually tapered off as everything shrunk or stopped growing.

Part of us thinks it's all good, the part of us is of course scared.... but i thought i'd reach out and see if anyone else had similar experiences?

 

thanks,

Em

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NicOz's picture
Replies 19
Last reply 2/16/2011 - 12:34am

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Well, I’ve decided it’s time to clear up what are some obvious misconceptions about me. Obviously it's going to be long as I have to spell it out carefully so as not to be further misunderstood :P

Many have made the assumption that I am anti-alternative therapy. I guess that depends on what one defines as ‘alternative therapy’. It seems to be anything that doesn’t involve convention treatment according to the definition of most. Apparently I have  a very different idea, though I'm sure I'm not the lone ranger... maybe.

Personally, I do not believe that alternative therapy includes supplements. Tumeric. Vit D. Astragalus and the like. In fact, the only thing that can concern me at times with regard to supplements is when people do not check that they are contraindicated for a medication they may be taking. For example- astragalus should not be taken when one is required to use decadron. The reason I KNOW this is because I took the time to look into it... which I would NOT have done, had I not been taking a supplement in which astragalus were included. (And you know me- I wouldn’t be taking astragalus if there wasn’t some evidence it actually DOES have an effect on the immune system, so it is also not the case that anything which could be considered a “natural” remedy is immediately discounted by me)

Meditation, yoga, massage. Nothing alternative there as far as I can see. People all over the world (and without cancer) practice these things because it makes them feel better. Alternative? Hardly. No, I don’t do those things. Not because I think them alternative, but because while some people obviously enjoy them, I don’t. Hair cuts make me feel good, though, and lots of people have those frequently, but I wouldn’t say I’m being alternative because I do.

Macrobiotic diets? Exercise? Drinking WATER. Juicing their own vege’s? People without cancer do that too, because of the health benefits. Once again? NOT alternative. The suggest that it IS, I find incredibly strange. I drink water *gasp* AND juice my own vege’s too- doesn’t make me alternative. It doesn’t make doing those things alternative therapies, though.

Clinics and therapies which claim to treat cancer without any evidence, and many of these have been around for many years so would have been proven one way or the other if the practitioners were interested in providing proof for their therapies- alternative therapy, IMO. Particularly when they are based on cellular knowledge from 50 years ago, and yet are still remaining providing the same tired old claims about the same tired old therapies, and using testimonials with no scientific evidence to support their claims. Some of these have been shown to be worse for the patient (QOL or physically) than doing nothing, so that is why I get somewhat irritated when they are suggested (particularly by people who haven’t undergone the regimen themselves). If I weren’t concerned they may not actually harm some patients, I’d say “knock yourselves out and spend all the money you want”. Trust me on that.

One other thing I am sceptical about, are claims re: “mets” (usually the lung) which have not been biopsied, and the resulting claims that someone’s lifestyle change has “cured them”. I cannot count the amount of times people have posted concerning lung modules, sure that it’s their melanoma progressing, only to find it has been discovered/confirmed to an infection, or scar tissue from a previous infection. So without a histological diagnosis, a ‘lung nodule’ which goes away or remains stable is not necessary something that has been ‘cured’. And that is not my personal opinion. That is a fact.

And lastly, the assumption that people make that it is a lifestyle change or supplement that is the reason they have not progressed. I find that somewhat assumptive, particularly when their lack of progression is well inside the norm for all patients in the same situation, and more particularly when people have undergone surgery and/or used conventional medicine to reach NED status. It confuses me as to how someone has come to the conclusion that THEY are the reason they have not progressed, but it’s far from the first time in my life that I’ve been confused. And I guess what I find frustrating relates to other people who are at a different point in their disease can be made to feel like they are to blame for having a different result, rather than mel being to blame like it deserves to be, and I don’t think people take this into consideration enough.

So please, stop with the mental shortcuts. You’re doing yourselves a disservice by throwing everything that doesn’t involve a medication requiring a prescription under the umbrella of “alternative”, and assuming anyone who takes issue with certain things I have mentioned, as being critical and closed minded.

Hopefully this is clear enough to be understood. I know I’m from Australia and I have brain tumours, but really... there are times when I wonder if I speak a language from an entirely different planet, not merely a different country when I see how easily misunderstood what I say can be completely misinterpreted.

So that is my position on this particular issue. Believe it or don't. Attack it or don't. Take it on board, or don't. Either way, I've said what I wanted to say and that's all that really matter to me. But from now on there is no excuse for make assumptions about my belief system, and that's really all I care about :)

Nic (in a VERY zen state since surgery and planning on remaining that way) Hope everyone else is feeling as good!)

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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jenniperry's picture
Replies 11
Last reply 2/15/2011 - 1:03pm

It's so strange to sit and watch the progression of this disease.  He has continued to decline and is now on oxygen.  He has fluid in his left lung and is starting to have secretions.  Thought we had the nausea and vomiting under control until this morning when it started back only 1 hour after phenergan.  He is on so many medicines for all his symptoms.  He has been up and down the last week.  I never thought he would make it to this week by how he looked last week, but he continues to surprise me.  He was able to get up and spend time with me on my birthday and was up and doing some things on his "list" yesterday.  His eyes are looking glassy and his face is thin. His kidneys are hurting him and his urine is very dark and not much being produced. It's like an emotional roller coaster.  He's up then way down.  I just feel like I don't know how much more I can take.  I'm trying so hard to just cherish every minute he's awake, but find myself constantly looking for clues of how much time he has.  I just don't want to see him suffer and waste away.  Praying for mercy.

Cherish every day you have.

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mimi0201's picture
Replies 2
Last reply 2/13/2011 - 9:51pm
Replies by: Anonymous, Jerry from Cape Cod

     Could someone help clarify the process of obtaining IPI?  What does "compassionate use" mean to us?  FDA approval is going to be prolonged once again according to our oncologist, another 3-4 months, he believes.  I've found a compasionate use trial, but one of it's criteria is that you must not be eligilbe for any other IPI trial.  Can any oncologist get it for compassionate use? I'm confused, the clock is ticking and meanwhile we have disease progression.

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JoanR's picture
Replies 4
Last reply 2/17/2011 - 8:56am
Replies by: Sharyn, Anonymous, Janner

If you are reading this Sharyn, please know we are all thinking about you and hoping your surgery went well.   If Jim is reading this, perhaps you can let us know about Sharyn's condition, and also the address of the hospital where Sharyn is if in fact she will have a long stay..Cheers Joan

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carol b's picture
Replies 8
Last reply 2/13/2011 - 10:08pm

i was wandering if anyone has any good anti depression drug. something that makes you happy...im on clanasapam 1 mg and it aint working and all it does it make me sleepy. i want to know are there any happy pills out there??

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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dawn dion's picture
Replies 5
Last reply 2/12/2011 - 7:30pm
Replies by: lhaley, carol b, Anonymous, KatyWI

Wow talking about this stuff seems so Weird!!!   Like I should be talking about someone else.  In Jan 2010 I went to my Dr. and asked to have this spot removed from my  left arm.  It had been there forever and for whatever reason it was starting to make me nervous.   She told me to wait six months.  Well 4 1/2 months into the six  it ulcerated.  I knew this couldn't be good.    Had it removed told stage 3 melenoma had a trace amount in the sentinel node and had the remaining lymph nodes under my left arm removed.   Told 30% chance it would ever return and went on ipiluminad (sp)   The whole time I was doing the drug I was told this is what you want to be doing - great  results with this drug.  Three months after I started the trial guess what I am now Stage IV.      I have two beautiful girls and I am scared out of my mind. 

 My Dr. called me the other night and said great news you tested positive for the gene change so now we can move on to the next trial.   Does anyone out there have anything good to say about this.  Because right now I am feeling like a guinea pig.   I read melenoma girls story and I swear it was like reading my own, with the exception of being told that interferon would do me no good and to go with the trial - I feel like I have been failed so many times by my Drs that I don't know what to do or think next. 

I know there are sooooo many of you out there in the same boat - but I feel really alone and scared beyond anything I have ever felt before - Every time I look at my girls all I can do is cry because I feel like I am failing my family.   I was recently told to get off my a** and stop feeling sorry for myself.  In time i know I will but for right now I am feeling very sad in Florida.

 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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I'll hang around in the melanoma section of chat for a bit in case you want to talk.

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lost's picture
Replies 11
Last reply 2/15/2011 - 3:14pm

I was just recently diagnosed...literally hasn't been but a couple of weeks. They say I have stage iv with tumors on my colon, lung, spine, spinal cord, and on my brain. So far I haven't really been given anything towards my next step, just that it will most likely involve surgery, radiation, and chemo.  I'm so in the dark about this and how to deal with this for myself and my family and kids. Can anyone point me in a direction?

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EricNJill's picture
Replies 31
Last reply 5/17/2012 - 10:21am

I can't even explain to you in words how I am feeling tonight.  After so many FAILED treatments in the last two years, we've finally found one that looks like it is working.  Nothing even stopped progression before.  When we found out the cancer spread to Eric's brain on November 2nd, I was devastated.  It was one week before we were supposed to start a BRAF treatment in Nashville.  Well God had another plan in store for us...we got the last opening in a BRAF/MEK trial in Nashville and we feel so blessed by these changes in just 2 WEEKS! 

I hope that no one is offended by this graphic pictures, but I had to share...

 

 

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Jan in OC's picture
Replies 8
Last reply 2/13/2011 - 6:35pm
Replies by: Jan in OC, Anonymous, KatyWI, Rocco

Sooo....when my husband broke his humerus bone in his right shoulder, the ER put an "immobilizer" on him.  Everywhere the elastic touched his skin, he broke out with nasty rash and hugh blisters!  Our PCP and Onc consulted and finally decided that the IPI infusion "assisted" his body's severe contact allergic reaction.  Unfortunately, they had to give him steroids, which the ONC said would decrease the effectiveness of the IPI :(  

Doc said the steroids will make him grouchy.  "too late, he's already there"!!!  I have been wearing my "nurse jackie uniform" all week. 

We go to the Orthopedic doc on Monday to check his arm swelling (lymphadema is not helping)!  On Wednesday, we go to UCLA for his second IPI infusion. RadOnc called me today and scheduled his brain MRI and mask simulation on Wed, 2/23, then SRS can be scheduled (maybe the week after, can't wait). I hope there is still only one small tumor.  In between all of that, we will be getting treatment for the blistering and broken arm.  Keeps us busy and out of trouble!

Took the paperwork to the lawyer this morning for our bankruptcy and will have to move somewhere new by spring, probably out of state because SoCal is just too expensive to live on our reduced income.  Damn bank won't give an inch.  Gotta get packed with help from the one armed man!   Will have to find a place to live (rent), new docs and treatment close to wherever we go, so many things to worry about.  Just trying to think of it as a fresh start. yeah.....

What a freaking crazy time we are having!!

Jan, wife to Dirk

laughter is the best medicine

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mkummerle's picture
Replies 6
Last reply 2/11/2011 - 11:01pm

Diagnosed Stage IV March '09.  Bone Mets to spine several tumors throughout body and lyphnodes.   Tried Interferon for nine months, GMC-SF for four months, Interleukin II,  Temodar and Ipilimamub.  Negative for BRAF.  All have been failed treatments.  Next line of therapy will be standard Chemo with Carboplatin and Taxol.  I'm  feeling like nothings going to get me a response.  Feeling like it's not worth it to start next treatment only to be set up for failure again.  I'm about ready to just let it take its course.  Just venting, thats what this board is for!   Thanks all!

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dafad777's picture
Replies 10
Last reply 2/12/2011 - 2:57pm

I was wondering when i go see the melanoma specilist if anyone knows if he would recomend slnb or should i say something about it.only because of what i've read said when they go back in for re-incision sometimes they do the slnb.no one did one on my daughter and they went back in and took 5mm more off her ear.and she has not had an xray,a cat scan,pet scan nothing.i think she should have already had something.her first surgery was oct 26th.2010.

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Melanoma Mom's picture
Replies 8
Last reply 2/12/2011 - 7:29am

I think we should all E-mail this "doctor" and set him straight, as I have already done. His information on Melanoma is so incorrect and ridiculous, it made me want to scream and laugh at the same time! What a fool. He actually states that using sunscreen has increased the cases of melanoma!

http://www.rocklintoday.com/news/templates/chiropractic.asp?articleid=96...

 

Join me in encouraging him to either remove or correct his article.

drdozier@surewest.net

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Angela C's picture
Replies 4
Last reply 2/11/2011 - 7:16pm

Hey everyone.

I just had my first cycle of IL2 in January. My second week in the hospital was the week of the 24th. After each round, I have been experiencing a strange sensation in my head. I would describe it as a medicine head feeling. I just feel kind if out if it. I am kind of light headed and dizzy. It us a hard sensation to describe.

I had this after the first week and the doctors seemed surprised by it and not sure what to make of it. I was originally attributing it to the anti anxiety meds I had taken, but those have been out of my system for a week and a half now and this feeling is still here.

I gave a check up with the doctor on Turs and we'll definitely be talking about it. I just wondered if anyone else had experienced something similar.

I can't help but have the thought cross my mind that I could have a brain metastasis causing these symptoms. But, I'm trying not to freak out.

Anybody have a similar experience??

Be kind, for everyone is fighting a great battle. -Plato

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