You are here

PCR Increase

Categories:

Hello Everyone,

My most recent PCR test came back at an increase from 0.005 to 0.034. I moved from 50 mg of Sprycel to 40 mg in November when I received the 0.005 result. I deal with numerous side effects on Sprycel. Irregular Heartbeat, Occasionally short of breath, Fatigue in my legs mostly that doesn't persist all day. I can be fairly active without issues. I take Metropolol (beta blocker), Linsinopril (Blood Pressure) to help with side effects of Sprycel. I take Magnesium, K2D3, Curcumin Tumeric and B12 regularly. I also have to take Pain Meds(Norco) regularly to help with pain and fatigue. I have desires to make it to 20 mg of Sprycel in hopes of getting rid of some side effects. I have had a couple of blips in my results the previous very minimal .016 to .022. I know that I have responded quite well to the medication thus far. I am 17 months post diagnosis.

My concern here is the uptick was quite a bit bigger although it doesn't seem to be winning any races as my last result was 4 months ago. I like most am extremely anxious about upticks. I do not have a great attitude about my illness it can be quite crippling at times. I am hoping that someone can offer me some advice for dealing with these situations. I am 35 with 3 girls and my wife to try to care for. I am still learning to be a father and husband and I mostly try to work hard to provide for my family. Our lifestyle has me as the only one making money. It is a tremendous responsibility that weighs heavily on me. Adding this illness has made things very difficult, and I often want to run away from my responsibilities. I can get quite selfish during these emotional times. My wife expressed that she has a difficult time discussing my CML as she is very anxious herself. I am hoping my results turn around on my earlier than usual PCR 48 days after my previous. We will see. My doctor doesn't seem overly concerned but is taking action in ordering labs earlier. I just need someone or a group to talk to. I do not have anyone to talk to that understands my circumstances. Please offer anything. Also could someone explain to me if this is considered a log increase?

Thank you
Shawn J

Hi

Increases or blips as some call them are common not nice at all but can be normal. There is a fantastic facebook group chronic myeloid leukemia uk lots of chats and sharing of experiences it really helps. Always someone about on it to talk to.

I hope this helps.

When I went from Sprycel 50 to Sprycel 20 my BCR/ABL when from 0.0243 to 0.0793 in a couple months.  My doctors were not concerned, and my numbers dropped for the next test, and now after a full year on 20 I'm the lowest I have been.  

I hear you on the burden this all places on our lives.  I support myself and an elderly dependent parent.  I need to be able to work and function, and sometimes that has been very hard.  Hard enough to make our way in life when we are healthy.  Little by little I've been able to normalize more, but still a full work week leaves me with little else to offer the world.  And when things are not going well it can be hard to believe I can take care of my responsibilities, myself, and my mother.  

Thank you for the replies.

Mamodei, I have read a large number of your post and we seem to be fighting similar battles. I have dealt with many of the same side effects. It has been discouraging to drop doses as fast as me and still deal with a large amount of side effects. I know I could probably eat better, exercise more etc, but it can be really tough to get out of the hole you feel like your in. I take car of myself much better than I used to. At the end of the day I am grateful for these crazy drugs but they can wear you down really quickly. I do hope I see a downturn in my results but I can only wait.

I am unfortunately not a Facebook user and try to stay away from most Social Media outlets as the breed resentment in me. I will try to find something local.

Thanks
ShawnJ

All,

I am happy to say my latest PCR result is .007. My doctor was really happy with the result and we have decided to try an alternating 20/40 mg of Sprycel. We also discussed my last result which was .039, he wasnt concerned with it and expressed he sees this occur more often then you would think.

We are going to start tackling my side effects now to see if I can get rid of the daily pain and fatigue.

Thanks to everyone and your kind words. This site has literally held me together at times.

Shawn J