You are here

Update.

This is the update I posted on Facebook... it’s dumbed down obviously for my friends and family that are not living with CML  I’m having a hard time today  

 

The good news. My blood counts are coming up a little. They are still very low and I can’t start any chemo until they are up high enough. Which could take a while. My bone marrow looked good. And I have reached HHR.
But ... Even tho the blood counts are coming up a little as soon as I start a chemo they will immediately be negatively effected. My bone marrow looked good because I was on a tki recently, but now not being on one will make cancer itself start making bad marrow again. Even though I have reached HHR, not being on a tki will make the bcrabl go up.

My doctor has reached out to Dr Druker. The man who has headed the treatment of CML. This is huge. Scary, but huge. My doctor is reaching out to a team of people because he doesn’t have answers. He said in his 25 years he has not seen anyone respond (or not respond) like this. I will also have the team at Mayo look at everything in hopes they can give me more answers. We are still waiting on a mutation test that will confirm why my body can not take these medications.

With out these mediations I will need a bone marrow transplant. With out these medications, my body will start shutting down. With out the transplant, I will die.

We are starting to prepare my body by getting healthy for a transplant. There is a tiny bit of hope we are holding onto that the mutation testing will show that maybe a chemo will work. That maybe something other than a transplant will work. But failing 3 chemotherapies already is just not a good sign nor is good for the cancer itself. This is a rare cancer and I’m responding rarely.

We should know more this week about the mutation testing. Mayo will also hopefully have more answers. There is so much to take in. This is devastating.... just devastating. My husband and I are extremely scared and sad.

I’m going to go lay in bed and cry and be sad for a while. Thank you for all the thoughts and prayers. They are appreciated.

Hi Sarah,

It's good to hear that you got a little bit of good news from your biopsy.  I'm hoping that Dr. Druker and the folks at Mayo can help with some insight and that you can get some normalcy back soon!

I'm wondering if a 20mg dose of Sprycel might get you on the right track, once you're cleared to start taking a TKI again.  It's water under the bridge, but I wonder if the Hydrea you took early on set you back.  I remember thinking it was strange that you were taking it when you were first diagnosed.

I'm praying that you only get good reports from now on!

Kirk

Edited post / update.

The reasoning for the ultrasound of the spleen is because it has to be a certain size for some new medications they want to start. They want to start a medication to help my bone marrow to produce more white blood cells and another medication to help my body produce platelets.
Then when my body is strong enough they are going to try ONE more chemo. It will be a high dose at first. We will will once opportunity to lower it if my body reacts poorly to it.

And the transplant team out of Sioux Falls will also be contacting me to start getting the samples they need to see if someone can’t be my bone marrow match.

Pray... pray as much and as hard as you can that the one last mediations works.

I have such a long road ahead of me. New medications. New side affects.

I also have my appointment with mayo to see what they want to do and I have to compare the two options and decide which one is going to be best for me.

You and Jason have been on my thoughts and I have shared your story with a prayer group I meet up with (because you asked for prayer).  I know it is hard and at times seems hopeless.  I wish I could say I know exactly how you feel but I do not.  I am not responding ideally but everyone has a different story to tell and some struggle more than others.  Please be hopeful and keep in mind that there is a lot of new developments continually with this disease.  Like you said it is possible that a mutation can be identified and targeted.  I have no doubt that you will receive the best treatment possible in the coming weeks.  Please keep us posted and keep fighting.       

Best of luck and prayers to you.

 

Stephanie