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Undetectable in 14 months

Have greatly valued this site since diagnosis in June 2018.  I started treatment - 400 mg Imatinib - on July 5, 2018.  Except for a two week period in August, 2018, where I had to stop taking the drug because of low neutrophils, platelets, etc., I have been on the TKI daily.  I just got the results from my September 9th draw and my BCR-ABL1 is undetectable.  

I want to share this news with the group and hope that it will provide hope for those who are in the early stages of dealing with this terrorist in our bodies.  

I am also undergoing proton beam treatment for prostate cancer, and I pray that the results will be similar.  I have had 8 treatments and have 20 to go.  So far, so good.

Best wishes to all on this site, no matter where you are in your journey!

Great news Rick - hope that the proton beams are as effective as the imatinib.

That's great news Rick!!!Keep going!!!
Best,
Vicky

Thank you so much for the post. I was recently diagnosed and really appreciate you sharing your story. 

Best wishes to you.  Once the shock of learning that you have leukemia abates some, you will find this site to be very helpful.  

I am really really happy for you Rick! Wish you the best!

This is a remarkable results. I am pleased for you since you really have had things rather rough. For my part, my response is slow at 0.45 at 11 months. I am waiting now for my 13 month result.

Hang in there.  Yours WILL come down.  Keep believing!

Hi Rick,

It is good to see that you are progressing so well and that you are in to your proton beam therapy as well.I am going to have my targeted radiation therapy within a few weeks and will discontinue the TKI for a while-please see my recent posting.

Do you have any side effects as I presume that you are still taking the TKI? I am interested to know if they are using any technique to protect your other organs such as colon and urethra using a spacer in the form of gel or whatever.

With best wishes

John

Yes.  I am still on the TKI.  Generally, minimal side effects with the Imatimib, but there are sudden episodes of fatigue, moth sores, etc., but much, much less frequent than in the first 6 or so months.  I used to need a nap every day.  Now, I nap about 2 to 3 afternoons per week.

On the proton, yes I have a spacer to protect the rectum, but the urethra is getting hammered.  Doc says it will weather it.  Today will be my 9th treatment.  

Best,

 

 

 

 

Hi Rick ,

Just curious to know how you are doing on the proton beam therapy and presume that you are still on imatinib as well? How is the urethra bearing up?

I have had my surgical intervention of the insertion of iodine 125 seeds coming up for a month ago but ceased imatinib six weeks ago and expect to be off for at least 3 months.The tamsulosin to shrink/relax the prostate gives me low blood pressure and higher heart beat but I am coping.

Do update me if you have time.

Regards

John

Hi John,

Thanks for checking in.  I finished the proton beam therapy 5+ weeks ago, and the side effects began to escalate the last week.  I am just beginning to feel better and the doc says I am doing great.  Yes.  I am still on Imatinib.  I have had issues with the tamsulosin also.  The second morning after starting to take it I almost fainted.  The doc stopped it and then we resumed after he checked me out.  I stopped my bp medicine and my bp held ok.  I am now on tamulosin every other day and back on 5 mg of lisinopril.  I really want to get off the tamsulosin.  I have struggled to feel well since starting it, but the every other day regimen is helping.  Doc says my prostate will still be inflamed for 3 months post-treatment.  

Not having any of the dreaded ED issues, but, of course, it is still early in the post treatment phase.  My radiology oncologist has assured me that my prostate cancer is pretty much behind me, even though I won't have my psa checked until January.  I hope he is right!  He tells me to pay attention to my CML.  

I hope you can get back on your imatinib and continue the journey healthy and strong.

Stay hopeful!

Rick