What next???

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RE: What next???

by IdaDome on Thu Jan 19, 2012 05:03 AM

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Susan,

That's great that you have done so well with your SCT.  I hope you continue to improve and feel well.

I had an auto SCT in 2007 -- about a year after I was diagnosed.  My results were not so good and we were barely able to get enough stem cells for the one transplant after 6 rounds of pheresis.  So a second transplant is not really an option.

My other treatments have been:  thalidomide; Revlimid; Rev/Vel/Dex;  auto SCT;  hyper C-VAD; rev/vel/dex/cytoxan; pomalidomide/dex/biaxin; along with some other combinations of these drugs.  The most successful treatment for me was the Rev/Vel/Dex combo.

I would like to try the pom combined with velcade or carfilzomib as it would be comparable to the Rev/Vel/Dex but with the newer drugs.  I just don't think anyone is doing that.

Thanks for your thoughts.  I'll let everyone know how my most recent testing and my appointments go.

Janet 

RE: What next???

by Liz99 on Tue Jan 24, 2012 02:09 AM

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Dear Janet,

I was just catching up on all your news.  I do hope that you are able to find something new to try.  Wouldn't it be great if you could just write your own plan?  I hope you can find something that will work so you can stay in Idaho and commute like before.  

I am thinking of you and wishing you the very best.

Take care,

Liz

RE: What next???

by artsyamerican on Tue Jan 24, 2012 04:47 AM

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Dear Janet,

You are an inspiration to all of us! Keep up the good fight my dear and best wishes in your upcoming travels!

Hugs,

Amy

RE: What next???

by SueUK on Tue Jan 24, 2012 11:26 PM

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Dear Janet

What nasty news ,in your last few cycles :(

In your list of what youve tried I didnt see Bendamustine? or Arsenic/VITC

We have trials ongoing here at moment in England.

Im doing my second treatment now of vel/cyclo phos and dex im 7 1/2 cycles in now pp only dropped this treatment from 28 g/l (uk units ) to currently 10gl, plateued at 20.3 from august to october but consultant finally agree to up dose of vel to 1.3 mg m2 I had only tolerated the 1.0 mg and this time we did weekly vel on 5 week cycle in 2010 (first treatment ) we did 1.omg twice week ,3 weeks cycle.

After inc dose to 1.3 even though i only tolerated 2 doses my pp droppped from 20.3 or 16? to 12 g/l :) so i believe its not just the drug type dose etc comes into it too,just a thought?

I'm now hopefully switching the cyclophosphamide(cytoxan ) to thalidomide 50 mg daily as only dropped from12g/l to 10 and only allowed 8 cycles of velcade here i think?

In Jan 2010 my first treatment programme ,I managed 12 dayd thal/dex/cyclo and pp dropped from 60g/l by about 20 ! I then swithced to vcd and got a very good partial response pp 1.2 gl after finishing at 7 cycles ,no plasma cells in bmb this time pps been so much slower coming down

Crossing fingers for us both :)

best wishes

Sue

RE: What next???

by IdaDome on Wed Jan 25, 2012 07:48 PM

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I've met with the specialist at MD Anderson and he agreed that it is time to change.  They have a couple of new trials (mostly Stage 1) - combinations with carfilzomib/ panibinostat; ARQ; or ARRY/carfilzomib.  I've not had carfilzomib yet.  I was trying to remember bendmustine when I was talking with him but couldn't remember the name.

I still need to meet with the folks in NYC - that's scheduled for this coming Monday to get their input. 

To start any of the new trials, I have to be off all treatment for at least 3 weeks.  And at that point, it looks like I will have to relocate for at least a couple months to see if the treatment works.  He said there is a fair chance that I wouldn't be able to go back home.

I discussed the idea of an allo SCT - not something that I want to do, and he basically agreed.  Neither of my brothers match, they did find an unrelated donor but he said their experience has been really poor.  He said if we could get the myeloma back down under control, it might be an option.

Their test results were pretty much consistent with the last results I got from NYC and back home so everybody seems to be in agreement there.

I've had velcade with cytoxan and that did not work for me. So my options are pretty limited.

I'll let you know what I hear next week.  Thanks again for all the good thoughts and words.

Janet

RE: What next???

by Guitarnut on Wed Jan 25, 2012 08:11 PM

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Hi Janet,

I've been following this threade from the sidelines and I just wanted say I'm sorry you've been thrown this curve ball. However, don't lose hope. You are an inspiration to all of us because I'm sure that there are many of us like me that just check in and read without making many posts.

I wish you all the best and I will be praying for your on all fronts that you face. Keep your chin up!!

Scott

RE: What next???

by IdaDome on Thu Jan 26, 2012 07:57 PM

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Scott,

Thanks for the good words.  I was diagnosed in July 2006 and have made it beyond the time that any of my drs. anticipated.  I've been told several times to "get my affairs in order" and yet I am still here.  The drs. and nurses often tell me they are amazed.

So for those who feel hopeless, know that there is hope and take advantage of all the resources we have available to fight this disease.

I with everyone the best.

Janet

RE: What next???

by Hophop4 on Thu Mar 08, 2012 03:40 PM

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Janet,

We haven't heard from you in a while.  I hope you are doing ok.  Are you still in the trial or have you switched to something else?  Thinking of you.

Hop

RE: What next???

by Liz99 on Sun Mar 11, 2012 12:43 AM

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Dear Janet,

I hope and pray you are doing ok and that you found a new treatment.  Please let us know if you decide to go ahead with the allo or what you decide. We are all pulling for you.

Love ya,

Liz

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