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Reason for transplant

I have so many people asking a lot of the same questions. So I just want to give you guys my story...
I was diagnosed with CML on 8/22/18. (Over a year ago)
I was first given hydroxera to help quickly reduce my 364,000 wbc count along with reducing my spleen size. I was very very sick when I was first diagnosed. I didn’t know I was sick or what I had until an emergency room visit reveal I had leukemia.
My first BMB and meeting with a hematologist confirmed it was CML.
I was hospitalized and given chemo. I had a few different leukocytapheresis treatments. I was given steroids, pain medications, and a lot of other things. The first time I was hospitalized was kind of a blur.
I got out of the hospital and got sick again. My platelets had dropped so low along with all my other counts I had to stop all medications and get back into the hospital. I had tons of platelet and blood transfusions. The hydroxera had knocked down all my healthy cells leaving me with no immune system and inability to be on any chemo.

I was released from the hospital once my counts came up and stayed at a normalish number. I was finally able to start gleevec. I was on gleevec 400 and that was to toxic for me. Again I repeated my blood counts failing. I had to stop the tki. Now my bcrabl had responded and it was reacting positively to the tki but I couldn’t take it with out it knocking everything else down. So they lowered gleevec and I got to start 100 once all my numbers came back up. But even on 100 it still knocked my numbers to the ground.
Now that I had stopped and started 2x my bcrabl had gone back up.

We switched to sprycel. Repeat. Knocked my blood counts down had to stop.

In the process of all of this since I started over a year ago I have had WEEKLY (if not more) blood draws. 4 bone marrow biopsies.

I have been on and off tasigna for 3x now. It was working to the extent of knocking my bcrabl down but it was also knocking my platelets and blood counts down. Now, the tasigna is not making enough progress in knocking the bcrabl down and my platelets are starting to go down again as well. I am also currently on a medication to help my bone marrow produce healthy cells and it’s not wanting to work. This is buying my time until the transplant. It’s not a long term option. This is only temporary to get me to the next step.

I have been to Mayo Clinic. I’ve seen my original doctor since day 1. My doctor has sent my case to several other doctors including Dr Druker. They have all come to this conclusion. A transplant is my best option to be able to come out on the other side of this and live a somewhat normal life. It’s been over a year and the only thing we have managed to do is get my spleen size under control.

The cancer is now getting more aggressive and it is important to do the transplant before I go into accelerated or blast phase. It’s not unheard of for someone to respond the way I am. But it’s rare. Extremely rare to have all the adverse effects that I have had. And my body can’t keep up with the hell its been through.

I just got married 2 months before I was diagnosed. I have an almost 10 year old daughter. I am 28 years old. I want my life back. I might die trying to get it back but Atleast I’m giving it my ALL.

I don’t have any other choice.

Wow. Your story should make all of us who have had good responses to our TKIs even more grateful that we are doing so well. This has been really tough for you, and we all send our love and support.

I assume in among all the biopsies they have done mutation testing, to conform the chromosomal change you have experienced. Other than that all I can ask that you and your husband keep us in touch with what's happening. There are a lot of us out here rooting for for you.

 

Thank you for the update and giving us the details of your battle. It really does sound as if you have given your all to this and while TKI’s are amazing drugs, there obviously are cases where they do not work out. 

From the experts you mention it seems as though some of the top people have looked over your case. Do you know if your BMBs showed any further mutations or chromosomal abnormalities (in addition to the usual 9:22 translocation)?

Whilst personally I didn’t actually get to the stage of transplant, I did get to a point where I was told I would need one and a donor had been found so I have a small insight into the stresses you must be going through. The decision was changed for me at the appointment I was going to discuss transplant dates. It’s an extremely difficult time and I can only imagine how hard you are finding things, and also your family too.

The information I did take away from it all was that a transplant is a potential cure and whilst not without any risk, they have very good success rates these days especially in younger people. If it is seen as your best hope for getting better then I am sure you are willing to take it head on. You have the full support of this community here and I for one would like to hear how you get on. Please keep us updated. I’m wishing you all the best from this side of the Atlantic. 

You must be an incredibly strong person!  I wish you all the luck in the world for the transplant to be successful and that you and you family get your lives back!  

What is your blast count currently?

Do you know your blood vitamin D level?

This is my first post on the forum but I am struck by how similar your story is to mine, so if I can offer any advice I will happily do so.

I was diagnosed in November 2016 at age 23. I was started on Imatinib then switched to Dasatinib, then Nilotinib, then Bosutinib, and finally Ponatinib (on clinical trial). For me, the problem was neutrophils - on each of the TKIs, my neutrophils fell (below 0.5) and on Ponatinib I also had very low platelets (below 10). Each time, my doses were reduced, treatment was start/stopped to let counts recover and I had to do regular G-CSF injections to boost neutrophils. 

My BCR-ABL results did tend to move downwards with the TKIs (my 'best' result was with Bosutinib with BCR-ABL of 11%) but I could never get anywhere near MMR because my treatment always had to be stopped/reduced which let the BCR-ABL creep up again. I was utterly terrified at the thought of having a transplant, but after a while I realised that I had no option.

Long story short, I had a reduced intensity allogeneic stem cell transplant in May this year. I am doing really well post-transplant and will be starting back at work next month.

I hope this brings you some comfort, even just to know that you are not alone in responding this way to TKIs. I often felt like I was the only person who couldn't find a TKI that worked for me.

I am rooting for you and wishing you the very best. 

Heather

Praying for you and I second what other members have already said that a silver lining is that a transplant is the only known cure. Very stressful and I cannot relate but sympathize with you.

I will only add that you want your counts as low as possible before proceeding to transplant (I know obvious statement) so have you given any thought to very low dose Ponatinib? Even experimentally low dose. I recently (4 weeks ago) had a friend with CML go to ER with nosebleeds and found to have progressed. Transplant was discussed but after similar chemo regimes to yours was put on Ponatinib. He is back at work as of this last Tuesday. I know every case is different but low dose might help in prep towards transplant.

Hoping and praying all the best for you and your family.

I have had mutation testing and have came up negative. 
We will def keep in touch. I do have a Facebook page and caring bridge set up as well :) 

Life is so unfair.  I have been so fortunate to have had a fast and deep response to Tasigna, but had to reduce my dose 3 times (currently on 150 mg/day once per day) because of bizarre side effects, none of which were as bad as yours. I assume you have tried lower doses of Tasigna and Sprycel

God bless and good luck with the transplant.  I have a feeling you will come through it quite well and never have to think about a lifetime of taking tki's :).