Hey Merek,

Sorry to hear about the news. Really sorry.

But the pomalidomide definitely looks promising from what I'm reading. Looks like you have maybe a 1/3 chance of responding to it (based on the data in the paper I'm reading where 30% of patients who did not respond to revlimid responded to pomalidomide) - that is very good odds IMO.

Fingers crossed you get stuck in the treatment group!

As Dom said, now's the time to ask for any favours

Merek -

That's great you got into the drug trial. So very happy for you that you made it in. Pomalidomide looks like a very promising drug. There's so much hope with it. Fingers crossed that you get put on it!

You are 3000 miles from Toronto? Jeez that's far! But Toronto sounds like a blast. When does the Toronto study start?

I know it would suck to be sick for 3 months at a time, but is it possible to just keep doing the stem cell treatment every 9 months?

I've been following the thread for a while and I'm pulling for you.

If only this was a option.... I asked.

With Multiple myeloma you are trying kill part of your immune system(plasma cells) and your immune system gets better/faster each time it faces a issue. So usually each time you try a drug or stem cell transplant the cancer comes back sooner. Normal is you only get half as long or less the second stem cell transplant(Sct). I would do it for 9 months, but not 3-4.

However there are two kinds of SCTs - auto with your own stem cellls and allo with sibling/match. Auto sct are safer, faster recovery and no host vs graft issues(rejection) Our last shot may one day be a allo transplant. My brother is being tested now. But death rates are 20-60% depending on factors. 5 year survivial is no better, but there is a tiny(2-4%) chance of full cure. Yes. A tiny precentage suffer endlesslly and then at the last second steal a miracle and then get to hope the host vs graft doesn't get them.

Toronto trial is over but may restart. The great thing about it was it targeted my 14'4 translocation version of myeloma with a special drug. 14'4 is very aggresive and only 15 % of multiple myeloma cases. So mostly we are the high risk guys that die and ruin the of other study results. The bad news is trial results were not great and currently I have not been able to get much for details. Apparently they have not published yet.

At the time it looked like it might the only trial I could get in. And we have a friend that lives there with a spare room. Now she is the only friend that makes my gf jealous ...so if i went, you might not be the only one with relationship stress.:

I don't know what a 14'4 translocation means but is sounds very scientific-y

You need to see if you can call one of the principle investigators and find out what the results were. Tell them you don't have time to wait for the published results.

You could stay in the spare room at her house without sleeping with her

Merek,

Make the best of each day you are given. And that goes for the rest of us as well. I hope and pray that the pain does not become overbearing.

On the 14,4 translocations I think we need Kalvs to explain. All in know is it something to do with genes and this version is bad.

On Toronto girl. The plan was to have her resist my magnetic appeal. But jealousy is not based on sex, it is based on fear of attraction. And add in her husband only being home 10 days a month.... deal with this if the probablem pops up

A translocation is where a part of one chromosome of your DNA is moved to (translocated) another chromosome. In cancer, this can have a few different outcomes:

1. Genes which are normally pretty silent are "switched on" or "turned up" because they are now associated with another gene which is quite active.

2. Genes which are normally active are now silent, because of similar reasons to 1.

3. You get a fusion between 2 different genes which results in a "fusion protein" being made by the cancer cells. Fusion proteins can have very different functions from the normal functions of the parent proteins, and usually send signals to the cells to "divide and conquer".

These are normally designated according to the chromosomes that are involved with a t(x;y) where t = translocation, x = chromosome 1 and y = chromosome 2.

In MM, about 15% of patients have the t(4;14) translocation, which results from part of chromosome 4 being stuck onto chromosome 14. The result of this translocation is a gene, called FGFR3, is "turned up" and produces it's protein, fibroblast growth factor receptor 3 (FGFR3). FGFR3 is a protein which sends signals to cells to not undergo apoptosis (programmed cell death), and to divide and proliferate, which means we call it a "pro-survival" protein. Apoptosis is a vital process that all kinds of our cells undergo, and when it is abnormally turned off, as is the case here, cancer can arise, as the cells just do not die, and continue to divide and grow abnormally.

Merek - a couple things.

Thanks for telling me about PvZ. Try Temple Run.

You're truly an awesome guy even though you make me feel like crap (I kid). But I do feel bad that for the most part I am somewhat a miserable person. I think of someone like you who loves life and is being dealt some total crap. It's inspiring me to appreciate life more.

I wish you the best and am proud to know someone like you. No I don't really know you know you just feel lucky I found this thread.

Merek
The depression isn't totally done with me yet I've been aiight but in 3 weeks this is like the only thread on 2p2 I've cared to update. My ootiots are starting ti think im defecting. Lol .
So I got an interesting bucket list question for you. With all the drugs they got you taking have you ever thought of running the table of all the illicit drugs out there? Like yanno snort an 8 ball, Shoot up , smoke crack. Its childish obv but on the been there done that you can atleast see what all the fuss is ...ain't like its gonna kill ya...
Glad you got approved fir an expensive sugar pill. . Again im not going to tell you sorry and ****, but keep trying to kick life in the teeth for as long as they let you that's for sure.
Ps if you make it down to the states or close like the falls area let me know id make a road trip
Pps while were at it..Niagara falls...you...barrel...GO

I have 17 years of platelet destruction problems. A devilish injection regimen occasionally causes obscenely high counts. When that happens I tell all the nurses we're reconvening the chainsaw juggling club. You quickly find out if they've plugged in their sense of humor that day.

So gents, shall we convene...

What I find fascinating about cancer is that one would think that it's a great idea: Cells grow and don't die. One of those things were the intuition is quite wrong.

Thanks Kalvs for the translocation explanation. I had been looking for that type of clear and simple explanation on the net. explanations are 4,000 words typically and have 75 other words I don't know the meaning of.

Killla - how long for the drugs to work when you first had the organ pulled? Or is it more a cocktail that has different parts taking longer or shorter to be normalish? Are things normal at home, work?

Bed time - after 5 days in the hospital I am a bit tired. But that story, a different day.

"instant" might be a strong word but basically once I take it it seeks out the thyroid cells and since Im radioactive with in 15 mins of taking the pills I got imagine , so over the 3 days it basically just kills em off. It was just 2 pills and thats it. Now I am just regulated on syntehic thyroid meds and ****, those take a few weeks to regulate properly

Hi Merek, I don't usually post in the lounge but came across this thread today. You sound like a truly amazing person with a fantastic attitude. I wish you all the best. Same to you killa.

For Chemo and Transplant paients there is one big rule. If you get a fever over 38 degrees celsius or 100 F....GO to the hospitial. NOW! It means you have a infection and with a depressed immune system this is major. By major, I mean you can die.

For those that have read this long thread, you will know I tend to use my brain and not follow rules. HOWEVER, with a fever or being sick in general you tend to not think things through.....

Got a fever on Feb 12th? Refused to go the hospital. "all they ever do is stab me 5 times for blood work, make me hang out for 3-4 hours and give me antibiotics and send me home". Let's see how I feel tommorow? The one difference, it felt like I was getting a cold. What my feverish brain missed is pneumonia. For long term chemo paients this is the number 1 killer. Lung stuff is bad.

So the 13th, still being a idiot, I refused my gfs attempts to get me to go to emerg. Went to see my doc instead. Who sent me to emerg and said you are in the hospital as least a few day as you have pneumonia. Damn......

5 days in hospital, IV antibiotics, share a room with 2 guys on oxygen, and a world class snoring machine. Took 3 days for my brain to unfog enough to curse myself. Got out after 5 days.

Since then. Last two days was down in Vancouver to see the Hemotoligist(blood cancer expert) and see if we can get on a experimental drug. That seems a go and we are down next week for tests and samples.

So what does a drug trial really mean????? It mean you have crashed and burned on all the regular chemos and this is all that is left....

And what does that mean?????? Six months to 3 years! Then I am toast. Six months if nothing works, 3 years if this trial and one or two other things work for a while. Anything over three years is likely a fever/drug induced hallucination.

There is a Tipping point. If your health or blood counts get too bad, they won't give you chemo. And if you don't get chemo, your blood counts will eventually get worse as your plasma cells crowd out the other blood cells. To get on this trial I need my Platelets to get above 75. Currently they are closer to 50.

Come on platelets, damn it, get moving upward. Merek, stop working so hard and rest for awhile. And listen to your gf

Are you now off the antibiotics?

Five more days of antibiotics. Icky tasting ones.....

and yes I will listen to gf more. Fever = Hospital

I agree....go platelets. At least they can zoom up fast, not like red blood cells that are slow to go up ... slow to go down. Platelets can go 70 to 100 to 50 when I am on chemo in a week.

Go Platelets Go! Go Platelets Go!

Haven't you learned by now that the GF is always right?

Keep kicking arse Merek.

One of these trials will be the golden ticket - let's hope it's this one.

and if all else fails, see Quorthon's av...

But seriously, I'm (and I'm sure we all are) rooting for you Merek. This thread seriously makes me want to hug my gf.

All the best to both Merek and his platelets.

Yes, this. And listen to the GF from now on.

Long time reader of this thread.

I'm worried of having no update on Merek. What's happening with you strong man?