81 replies to this topic

[BethG]

I figured I should start my own thread now that we have moved to this new board.

Brief background: 44yo female, diagnosed CML June '08. Started Gleevec, had great response until March '09. Moved to Sprycel, no response at all. Additional genetic testing showed the T315i mutation. Currently on hydroxyurea until we figure out new plan. Doctors have referred me for a Bone Marrow Transplant. Currently trying to look at other trials/options to make sure I make the best next step for myself. I am being treated at Stanford.

Good news is that my work has been absolutely amazing! Beyond amazing. In fact, one of my co-workers has a friend who is involved with a bone marrow registry sign-up group and my office had a donor drive for me yesterday...almost the entire office signed up (including my chiropractor, who treats most of my co-workers). A few weren't able to due to age or traveling, but what an amazing experience. Honestly, it was overwhelming.

I meet with the BMT team on Monday for an initial evaluation. I figure I need to be moving forward on multiple fronts right now.

Thanks everyone for your advice, input, support, etc. It makes me feel not so alone.

Beth

[ChrisC]

Beth, we're following your trek through this time of change for you, having good thoughts for your treatment and well being. Great that your office is so very supportive! If you'd like to meet sometime locally (I live in Redwood City), let me know: yaycc@att.net  Chris

[Trey]

Beth,

Here is some good reading.  There is still reason for optimism about your future.  There are options available.  Get back on the horse that threw you.

http://bloodjournal.hematologylibrary.org/cgi/reprint/112/1/53

http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/CML/index.html

[BethG]

Thanks Trey, I will read through these articles (BTW--irony of all ironies--I'm a rider! The last time my horse threw me I broke my back! lol)

[SheilaW]

What exactly causes this mutation???  Is it something you had from the beginning but did not know or developed along the way?  How many people have this?  Is it more common now or has this mutation just developed lately?  Trey...these are probably questions for you.

Beth...I am following your story with interest and compassion.  We are all in this thing together.  Best wishes and keep us posted please!!

Sheila

[Trey]

The causes of the kinase mutations are not completely understood.  Some think they are there from the beginning, and just show up over the first year or so, and this seems to be the prevailing viewpoint from what I can tell.  As the drugs kill off the non-mutated leukemic cells, only the kinase mutated ones remain.  That is supposedly why most mutations show up within the first year, or else they normally do not occur at all.  This seems to be the case for most of the folks on this Board who have mutations.  So that would mean they do not really "develop" at all, but are simply there from the beginning, or at least the basis of the mutation is there, but takes some time to show up.

Others think that taking a low dosage of drugs might be able to cause mutations.  I asked Dr Druker and Dr Shah about this during an L&LS Education Seminar.  The answer was that they think this is possible, so a low dosage would not be recommended.  But my own personal view is that low dosage mutations do not seem to occur based on observation of folks on this Board and other study of the issue.  But that is not very scientific, so I do not know the right answer.

Most mutations can be overcome by either Sprycel or Tasigna, with a couple exceptions.  Unfortunately, Beth has one of the exceptions.  The odds of having a resistant mutation is low (well under 10%), but that is small consolation to someone who has one.  But several developmental drugs show promise.

I am very interested in this subject of kinase mutations since I would like to use a long term low dosage of Gleevec, since I have been PCRU for 3 years.  I do not see the point of 400mg daily for long term use, and would prefer to drop to 200mg.  But I am just expressing my personal wishes for more information on this issue so dosage options can be more flexible.

So I think there is just not enough information on this issue.  But generally, if a mutation does not occur in the first year, it will likely not show up at all.

[SheilaW]

Should we all be tested for this mutation when we are first dx or sometime in the first year?  It makes me feel very uneasy since I myself am only 7 months in. I wonder???  Is this the same thing that Dawn and Charmaine from our boards had happen?

[BethG]

Thanks everyone! In Dawn's case, I would guess she had the same mutation. I don't remember, and I don't want to go back through her blog right now...hits too close to home for me personally!

I have done a lot of reading and research over the weekend (thank you Trey for the links you sent) and I "get it" why my docs are pushing transplant so hard. The statistics are absolutely in favor of doing it sooner rather than later. That is not to say I'm going to stop researching and not get a second opinion--I will do all of those things.

I will say, however, that (at least for now) I have my head around my situation and I'm feeling at peace and ready to be in the ring fighting with all my might. I love being in the "head space" I'm in right now!

This afternoon I have my first appointment with the transplant team. First, I meet with the social worker and then with the doctor afterwards. My parents and sister are coming with me today, which will be great.

Anyways, enjoy your Monday everyone and thank you for all of your support and wisdom, it helps more than you can possibly know.

Beth

[CaroleL]

I had a 'BCR/ABL1 Kinase Domain Mutation Analysis' done in January of this year.  The report states "No BCR-ABL kinase domain mutations detected",  Does this mean I am 'out of the woods' for this concern, or could a mutation be detected at another time  I see my onc on Thursday of this week, and due to my slowing response recently with Gleevec, I want to be well equipped with questions.  I definitely intend to ask to increase my G dosage, however I expect to be met with resistance since my WBC continues to drop (currently 2.2 & Neuts 1.39).  I also would not be surprised if he suggests a change to Sprycel as that has been mentioned in the past.  Thanks, all.   Carole

[Trey]

Most CML experts would tell you that the quicker and deeper the response to Gleevec, the less chance for mutation.

I also like to remind folks that 95% will do well on CML drugs.  Also, there are now several options for those who get the T315i mutation, whereas just a couple years ago there was only one option -- transplant.

I asked the family about Dawn's case, but did not receive a response, which I can understand the family would like to move on, or maybe they did not know.  Her blog did not reveal the cause of the aggressive course of her disease, so I don't know if she had the T315i.  But it seemed that the chemo she received put her CML into a rage, and also damaged her organs.  Her situation was very unusual because her CML was so aggressive, and it was also very sad to watch through her blog.

http://www.goshdawnit.com/

[BethG]

Thought I'd give a quick update. Had a great meeting with the BMT folks yesterday and we've started the typing process to find a donor. The team is recommending a marrow donation, so my poor donor will have a bit more discomfort.

Met with my hematologist today and unfortunately, I seem to have moved into the accelerated phase, which changes the timing of everything (i.e., makes transplant more urgent).

So, fingers crossed everyone that a donor can be found for me quickly. If not, I will be referred out for a cord transplant (they don't do those at Stanford)...

I have lots to do and sort out and keep on keeping on! I am in the battle and I will win, it will just be like climbing Everest without oxygen...

Beth

[hannibellemo]

Good luck, Beth, I'm rooting for you and sending all sorts of positive thoughts your way! Your attitude is so fantastic I'm in awe!

Pat

[SheilaW]

Beth....you got to be kidding...how do they know you are in accelerated phase?  You must be thinking that everything is going WAY too fast!!!  You are taking this very well and have an awesome attitude and outlook.  Keep it up!!!

I have lots of questions but am going to count on you to keep us posted...

Thinking of you,

Sheila

[kendavies]

Trey,

I would be very interested if you contemplate any follow-up action to your speculation about the possibility of dosage reduction from 400mg to 200mg of Gleevac for long term use.

Is this something your onc considers at all feasible or is there just not enough information to yet make such a decision.

It's certainly something on my "side-effects moderating" wish list for daughter Suzie if she can attain and sustain PCRU. (We're currently awaiting her 9 month PCR reading).

Ken Davies.

[BethG]

Hi everyone,

Just a quick update. Fortunately, doubling the hydrea has done the trick and most of my counts are back to normal--and I'm feeling great. It is still a little weird to think that I look so great and feel so great and can be so sick at the same time!

My insurance has approved the transplant, so we are officially on the hunt for a donor. I should have a general idea of how challenging this will be in the next couple of days.

I am also working on getting a second opinion at UCSF. I've faxed my records over and I'm trying to get in with Dr. Shah. I figure a sanity check is a good thing right now. It would be great to find a "hail Mary" option....I'm realistic about the probability, but it never hurts to dream a little!

I'm still working and trying to get myself organized for the next few months. Went to the dentist and the dermatologist to make sure all systems are A-okay. I bought a laptop, onto which I am dowloading all my favorite CDs, and my very generous and thoughtful co-workers bought me a Kindle, along with a generous gift certificate to buy books.

Anyways, I promise to read the other threads soon and catch up on how everyone is doing. I love that our quiet little CML board has become so incredibly active since the move to the new system!

Beth

[hannibellemo]

Beth, I think of you everyday and wish you well!

[helenet]

Wow-- I have not checked "our" website in a while.  I am glad that you are feeling better and your spirits are so up.  I have faith that this will work out for you.  Please keep us posted-- I will be praying for you!

[SheilaW]

Beth...you sound so organized and ready to battle!!!  Good for you!!  So glad the medicine has given you more time to find a donor...as always..keep us posted!!!

[BethG]

Hah, hah...at least I appear organized! Had a total meltdown at work yesterday because I hadn't been able to go run an errand..lol. I e-mailed our VP of Admin and was like, I need to stop working, I'm not doing anything right, etc. etc. etc. After she talked me down from the ceiling, I went to my dental cleaning appt., went home, and chilled and I'm much better today! lol..

I'm busily dowloading every CD I own into iTunes, so I have a selection of music...

Onward, one step at a time!

[BethG]

Another quick update...I should hear tomorrow if they have found a donor. I spoke with the BMT doc's nurse yesterday and she thought there were some matches, but didn't have any details and she didn't want to give me bad data. I also have an appt. with Dr. Shah at USCF on May 13 for a second opinion.

The hydrea is doing its job, and my bloodwork is stable. My WBC and RBC were a bit low this week (probably explains why I'm a little tired), but the other blood bits are holding steady--which is a good thing.

That's all for now...been catching up with everyone's posts and wishing all my fellow CMLers well...