What next???

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What next???

by IdaDome on Thu Jan 12, 2012 10:21 AM

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I'm in the middle of cycle 8 of the pomalidomide, biaxin and dex. clilical trial.  Numbers are going back up - 1000 (mg/L October), 1500 (mg/L in November) and, now, over 5000 mg/L iin January.  I'll do testing again next week to see if it has dropped any. 

I see the dr. again the end of January and I'm guessing that I will be put out of the trial. Don't think they have other options to offer.  I'm also hoping to see the specialist and MD Anderson again to see if he has suggestions.

So I guess I gained 6-7 months from this treatment but I struggled each month with the dex.  Now I don't know what is next.  Any suggestions out there?  I've tried most of the basics

Hope you all had a good holiday and are looking forward to a wonderful 2012.

Janet (In Idaho)   Kappa light chain MM 

RE: What next???

by JuJuBean on Thu Jan 12, 2012 01:30 PM

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Lord, Janet I sure hope there is another path. I've gone off my Vel/Dex until after my dialysis access (whatever it may be...2-8 weeks) and will be off the Rev next week. I pray for both our sakes that there is something else. I also have Kappa LC with depositions to the kidneys.

We can pray for each other. St Crystotom said "wherever two or more or gathered in His name, He is in the midst of them". I believe this with all my heart and soul.

If that fails:  do the Willie Nelson thing "I laugh when I can and I deal with the rest".

Luck and Love and cyber hugs, JuJu

RE: What next???

by UTboy1 on Thu Jan 12, 2012 10:34 PM

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I'm sorry Janet, that is tough news.  Will your insurance company allow you to go to Arkansas and participate in their Natural Born Killer Cell infusion trial?  I believe you're exactly the type of patient they're enrolling.  I also believe they're very excited about their success to-date.

Dr. Tricot was a major investigator while head of the research department in Arkansas.  He and I have talked about Natural Born Killer Cells and their use for treatment.  I know he personally is positive on the idea.

I hope you find some answers and direction somewhere

Bestest to you

Doug

RE: What next???

by Hophop4 on Thu Jan 12, 2012 11:11 PM

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Janet,

Sorry to hear this trial is not working for you as you had hoped.  I hope you find something else soon.  I should be heading over to MDA in March for my annual testing so if you are down here around that time let me know maybe we can meet up.

At the health club that I belong to there is a guy that comes in and uses the pool.  He has Multiple Myeloma and goes to MDA.  He has been in a trial for more than a year now and they got him in remission.  He says it is called ARI 500 I think but I tried searching it and can't find any info on it.  Has anyone heard of this?  They want him to have a SCT but because he lives alone and does not have a caretaker they won't let him do it.  He says they will keep him on this as long as it is working for him. 

Hop

RE: What next???

by TJW60 on Thu Jan 12, 2012 11:46 PM

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Hey Janet.....

I know you have to be disappointed with the trial results so far....I'm encouraged from the replies from Doug and Hop about Little Rock and MDA.  There are more options out there so you have to just keep on keepin on!

You're on my prayer list along with JuJu we can create some serious positive energy for you......

take care

Terry 

RE: What next???

by Windymoose50 on Fri Jan 13, 2012 08:30 PM

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Janet,

I am so sorry this has gotten so difficlt, I would check into what Doug and Hop are talking about... Sounds awesome.. Good Luck and God Bless... Gayle

RE: What next???

by IdaDome on Sat Jan 14, 2012 01:09 AM

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Hop,

Yes, I have heard about the ARI 500 trial.  I chose this other because it is an oral med and has allowed me to continue to live in Idaho and work as I can.  At least it has given me 6-7 months.  The ARI 500 trial would require a move to Texas for at least as long as it took to see if it is working.  Now may be the time for that type of decision.

I'm scheduled to meet with the specialist at MDA Jan 24 and then to NYC Jan. 30.  I'll redo my testing next week and see if the numbers have come down at all.  Then we'll decide whether to continue with this trial or look for something else.

Thanks for all the good wishes.  I'll let you know how things come along.

Janet

 

RE: What next???

by rnrunner26 on Tue Jan 17, 2012 02:56 AM

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Hi Janet,

I hope things improve for you. I am not familiar with the other trials mentioned, but I have been very happy with my Hem/Onc at Mayo Clinic in Jacksonville. I am fortunate to live here in Jax so I dont have to travel, and am finally doing better after my SCT in December. Blood counts are normal now, and I am on no medications (other than antibiotics) at this time.  I started out on Rev/Dex for 3 months prior to my harvest and transplant. Whatever treatment you decide to go with, I hope things work out well for you!

Susan

RE: What next???

by DebJr on Tue Jan 17, 2012 08:36 PM

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Dear Janet in Idaho,

I'm very sorry to hear this news, but glad to see you are visiting other places for more possibilities. I think it's important to keep on trekking. Which place are you going to in New York? I am based in NYC, so if you have any questions about anything, please feel free to ask.

Wishing you the best of luck,

Deb Jr.

RE: What next???

by IdaDome on Thu Jan 19, 2012 04:54 AM

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Deb Jr.

Thanks for the offer.  I'll keep you in mind if anything comes up.

I go to Weill Cornell - they were located in the NY Presbyterian facility but have just moved to a new location about 4 blocks away.  This will be my first time at this new office.  It is on the East River just north of the Queensborough Bridge.  They have a nice walking trail along the river.

I stay at the Helmsley Medical Tower which is part of the clinic with hotel rooms on a number of floors and apartments for students on the rest.  All rooms are kitchenettes.  It's reasonable for NYC at about $250 per night but at least they don't charge the hotel taxes.  I'm not sure why.

I usually try to get in and out of NYC as quickly as possible.  This time I fly in on Sunday, see the dr. on Monday and fly out on Tuesday.  (It's the best I can do with my long flights.)  So I don't usually have time to do much sightseeing. 

Janet

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