3 replies to this topic

[Ludwigh]

Hello everyone. Well its been a while.So many new faces. I read the forum almost daily, to keep up on how everyone is doing. Some history: Failed on Gleevac after about 12 months. Painful loss of response, never progressed, platelets started to go up. Mutation found, I think it was e355g (355 something). Started sprycel. Had MMR within 4 months. PCRU around 7 months, sustained (Just coming up on sustained PCRU for two years this month)  Last PCR was in mid August, still PCRU.

Since Starting Sprycel my side effects though not consistant have been significant.Various bouts of bone pain, Head pressure, hip pressure, spine pressure, burning bone pain in my shoulder blades and hips (often times requiring Hydrocodone). Early on I had this odd tingling warm painful sensation along the back of my hips. Lasted a few days or weeks can't remember. Then several months ago I had a similar sensation deep in my left leg, burning tingling and well felt. Starting at the beginning of this month I had the same sensation in my right leg. Well this month has been rough with bone pain, headpressure, sickness. The deep burning tingling almost needlelike sensation in my right leg has been quite severe. Doesn't bother me so much when I walk but when I set and diffintley when I am laying in bed, it is quite rough. So much so I can't sleep. Hydrocodone pretty much eliminates it but I don't like the hangover feeling I get after words. Has anyone else had this? Worried me so much I moved up my CBC and PCR. CBC shows everything normal. Still waiting on the PCR.

I guess like every CML'r, anything new and bad I think the worst. 4 year cancerversary coming up this Thanksgiving.

Terence in Colorado

[Tedsey]

Dear Terence,

I am sorry you are having a tough time.  Every once in a while, I get a neuropathy sort of pain (similar to what you mention in limbs).  I call it that because it mirrors what my 86 yr old mother in law suffers from occasionally.  So much for my youth.  I am already suffering a disease and pains of one advanced in years...oh well.  Anyway, I have bone pain in my hips and rib cage.  It is usually just annoying, but sometimes it can really hurt, esp. when I am physically active.  It all just goes away in a relatively short time. 

Have you been checked for sciatica?  The pain in your right leg like sounds similar.  A good friend of mine had it.  I am so happy to year you are doing so well on Sprycel, especially after failing Gleevec.  I also failed Gleevec, but after 9 months, (it was difficult for my body to tolerate, didn't get CCR and the PCR didn't move).  I have done much better on Sprycel.  I have not gotten the awesome response you have (my PCR has not moved for 9 months and I am still only CCR and just hoping to keep it).

Congrats on 4 successful years with no progression!  This Thanksgiving I also have an anniversary.  I am going on 3 years.  It is always a bittersweet time of year.  Thanksgiving used to be my favorite holiday.  However, it has been replaced by Halloween (if you can't beat 'em, join 'em----just kidding, it is more fun with my kids with no feelings of sadness attached to the holiday---anyway, I always liked to be spooked, but I tell you, the CML dx was enough to last a lifetime---it was terrifying, and it happened on Thanksgiving).

I hope this pain issue is resolved and I wish you well,

Tedsey 

[Ludwigh]

Thank you, Tedsey for your response. Glad to hear you are stable. I wish I could say that with a PCRU the desease is less on the mind. Maybe when not side effects are present. But I think about it daily, when I have bone pain episodes I am some pretty dark places. Anything new comes up the fear and terror comes flooding back, at least for me. I was 28 when I was first diagnosed. I feel like I am about 50 now (32 actually) Memory not as great as it was. Mornings are rough. Don't have the stamina or energy I used to. After work I go home and sleep for about 1 to two hours. I guess that the norm for us.  Neurapathy is not something I got alot until I got this. Will have to see if its a perminant thing. Hope not!

Used to really look forward to this time of year as well, sort of a struggle now at times,

Well any way hope your Holidays are light and un-eventful,

Terry

[acb]

Have you had your potassium levels checked? I know sprycel has caused me to have low potassium (and I think all the TKIs may do this). I used to have similar troubles until I started taking a potassium supplement. My doctor prescribed mine but you can buy one at any place that sells vitamins. I still have some pain but nothing as severe as before taking potassium. If I forget to take it, I notice a lot more pain.