168 replies to this topic

[gerry]

Welcome to the forum, how are your side effects going?

[Chrissy_Z]

Hello

 

Its hard to distinguish some of the side effects form the craziness of life right now. I have been undergoing lots of hormonal changes from the abrupt weaning of the kids, plus they bring home illness from daycare. I was having a lot of knee pain but it was decided that was hormonal and its passed now. I have been very tired and cut back my workload a lot. I am struggling to even do the small amount at the office that I am doing now. But again kids? Mental fatigue? The nausea is very bad some days and fine other days after taking the pill. My daughter curls up in bed with me and says "feel better mommy". But I am feeling a lot better overall than I was before starting the Gleevec. No more fainting/dizzy spells. I am so grateful. Not quite back to my normal self but I have hope. 

[kat73]

Welcome, Chrissy - Sounds like garden variety side effects of Gleevec, but having a job and two small kids is the icing on this cake.  Hang in there.  You have a good attitude.  I'll bet your 3 months checkup is going to show a great response.  Have you read Trey's CML blog?  Everything you could possibly need to know is right there (here).  And we're all here.

[gerry]

Hi Chrissy, I remember the first pill I took, climbed into bed and waited for the worst to happen, nothing did and I got up again. I read a bit later that you're not supposed to lay down straight after taking it. Lol. I had nausea off and on, found ginger helped and when it was really bad I had Maxalon to take, though it can make you feel a bit sleepy. Takes a bit to adjust, but talking to others on the forum can really help. Hopefully one day they work out how to cure CML, but in the meantime the TKIs work to keep it at bay for most people.

[steelpony5555]

Hi..my name is Dave from central Texas.  I am retired from Verizon as a cable splicer and was also a volunteer fire fighter for 20 years.  Yes I ride a Harley hence the name..lol...also like to travel and we have a 5th wheel that we use as much as we can......  Was diagnosed last May on my birthday....yeah Happy Birthday to me...lol lol  been on Tasigna since then with multiple side effects that come and go.....nothing I can't handle so far.  so I am at 0.0633 as of my last test Yaaah ....gotta keep on kicking butt.....Dave

[campanula]

Hi Everyone - I am a 58 year-old woman from Washington state.  Just diagnosed in mid-February 2016 at a routine CBC.  Fortunately, my CML was caught early:  WBC=55 on 2/11/16 (FISH 97.3%).  After starting 400mg Imatinib on 2/24/16, WBC=16 on 3/9/16.  I was so relieved!  I don't have too many side effects (mostly fatigue and slight rash), and I like to think they are diminishing.  My next checkup is in mid-April and I will make sure PCR baseline is established then.  Haven't been doing weekly CBCs - just waiting for Imatinib to work, which it is.  Will also be getting a second opinion from a CML specialist in April.  Based on my experience with family, I believe it is always a good idea to get a second opinion. 

Within the past four years I have lost a brother (non-Hodgkin lymphoma) and my father (multiple myeloma), and have been overstressed.  I own a small business, got it through the recession, lived with two teenagers and then launched them, survived my husband's lay-off (fortunately, he's now in a better job), the list goes on...  Plus, I'm aging even as I write this.  I can't help but wonder if somehow this all contributed to my CML.  My brother was told that, in all likelihood, there was a problem with his immune system and I wonder if I have the same "defect," too.  I think it's odd that three out of five members of my immediate family have blood cancers. 

I wanted to thank all of you for your insight and information.  Trey's blog plus the webinars and articles you have shared have been so helpful.  This forum has helped me more than any other source in my crash course on CML.    I can't thank you all enough.

[Gail's]

Welcome campanula although I wish this was a more fun club to join! I too am from WA. Grew up near Hanford. I'm the third in my family with blood cancer too. I do believe my family's problem came from radiation releases in the 40s and 50s.

[campanula]

Gail - your close proximity to Hanford does sound suspicious.  I'm sorry to hear about your family situation  - it's a tough one, for sure.  I am in western Washington.  I have been wracking my brain, trying to think of environmental culprits that my brother, father and I have shared, but I came up blank.  I don't expect that they will figure this out in my lifetime.

[Red Cross Kirk]

Bump - for old time's sake.