After my last PCR I was at a 4.14 log reduction, and my latest was a 3.43. Of course this now has me concerned about my next PCR in three months. If I was to drop below MMR, what have others done in this situation, changed medication or increased the dose of your current med? I'm currently on 300mg twice a day of Tasigna.any other comments regarding my PCR result would be appreciated.
Posted 09 September 2013 - 03:35 PM
I just saw your post and had a similar question that I posted last week but no response. I Was dx last November and did well until my August numbers, which went up slightly. Also, feeling really wiped out lately. Do people wait for the next three months or are there less expensive tests that can be run to see if things are getting back to normal. So far, I have not missed a day of work but it is getting harder to drag myself to the office. Thanks for any advice.
Posted 09 September 2013 - 03:54 PM
Hokleman I have really been having problems with bad fatigue, especially after getting my grandkids up to school, I try to get to bed a little early, but his fatigue I cannot seem to shake it.
Posted 09 September 2013 - 04:51 PM
Mariebow, Thanks for the response. I was just doing well for the first 9 months after dx and thought i was on my merry way. I guess this is not how the disease works. Also, not sure if I should be concerned about some minor changes in my recent tests. Appreciate your response.
Posted 09 September 2013 - 06:10 PM
How often are you having your CBC tests? I have always had my BCR-ABL tests at 3-month intervals regardless of BCR-ABL ups and downs.
The key thing is that your CBC counts stay in range in the intervals.
Posted 09 September 2013 - 08:39 PM
Hokieman Sep 6, 2013 1:25 PM
I am also getting tested every three months.
I am 59, male in reasonably good health
November 2012 BCR_ABL was detected at 16.045% at diagnosis
February 2013 BCR-ABL was detected at 0.8328%
May 2013 BCR_ABL was detected at 0.3558% (was feeling really good)
August 2013 BCR-ABLE was detected at 0.5519% - it increased in three months!!
Lately, I've felt more run dow but don't know if it is CML in general or the increase in BCR-ABL.
Should I be concerned?
Posted 10 September 2013 - 06:54 AM
Badger and Hokieman
In both your cases your PCR results are essentially the same, while technically your numbers "went up" in reality your results are flat and neith of you had a status change.
PCR is very nerve wrecking, it is also volatile and swings are expected. I know it is hard but you have to watch for drastic changes or upward trends. Drastic being greater than 1 log increase. Neither of you had that, you are the "noise" range. Annoying and unsettling but at this point nothing to worry about.
Try to relax and forget about it until next test. That is the true way to survive CML by not letting it eat away at you every moment.
Posted 10 September 2013 - 12:18 PM
I appreciate your taking time to respond. Altough ancious, I feel much better after reading your response. I guess I've been lucky myself so far myself but was surprised not to continue to show significant progress after my last test. I guess I'm officially on the roller coaster that CML has to offer. All best.
Posted 10 September 2013 - 01:53 PM
I get my CBC done quarterly at the same time they draw blood for PCR testing. My CBC results have not really changed significantly over the last three months. Just frustrated I'm feeling so tired lately. I honestly felt better six months after disagnosis than at nine months. I guess I was naive in my expectations.
Posted 10 September 2013 - 09:33 PM
Your original post went into an L&LS black hole. So we did not see it, or we would have responded. Here it is under a place called "L&LS" -- wherever that is.
Anyway, your PCR is doing what many of us see. The good news is that it is now quite low. But often there is a leveling out (plateau). Your plateau is at a low level, and the difference is statistically insignificant, so all is well. No need to worry.
Posted 10 September 2013 - 11:55 PM
re "should you be worried"
I have to believe that your oncologist would answer that question for you surely he/she is knowledgeable enough to be able to !
I think I read you've only been sick 9 month? did you start off on gleevec or what? our oncologist tells us tasigna is the "go to" drug b/c it showed better results in getting to 0 on your pcr sooner but Mark started on gleevec (there wasnt tasigna or sprycel then) & he got undetectable within a few months. I dont think you should be worried, I think its still very early in the game for you and if one drug doesnt bring it down then another one will. that will ease your mind when you get better results on your blood tests but as far as the side effects I saw him go thru many within the 1st yr then it sort of narrowed down to 2 or 3 with fatigue being the #1 complaint all along.
Posted 11 September 2013 - 12:21 AM
AMEN TO THAT~~~ >>One of you commented that the dr. only looks at whether or not the disease is under control; they make you feel like you should be happy b/c you're alive . I feel they should be way more helpful , concerned and proactive in trying to find out how a patient can achieve not only remission but a good quality of life.<<
Boy don't they make you feel ungrateful, while they are make a wad of money off they drugs and we suffer for years mentally and physically. They keep saying things like you should be more positive, oh how lucky you are. I think they are crazy and should try it themselves. I think the researchers, drug companies and the government, don't want us to have a cure and we should be so lucky!!!
Posted 15 September 2013 - 08:40 PM
I was lucky and felt so good after 7-8 months of treatment when I was diagnosed last November; however, I've really struggled with fatigue the last six weeks. I still get to the gym at least 5 times a week and push myself. I feel better for a few hours but then the fatigue sets in again. Is this permanent or just a cycle I'm going through right now???? So far, I've not missed a day of work but I'm already dreading going to work tomorrow. Yiks..Just needed to whine awhile. I'm sure this will pass too!
Posted 15 September 2013 - 10:41 PM
Which drug do you take? As far as working out all the time, I remb. the 1st thing the oncl. told Mark is to "pace yourself". He, like you, works out, etc but has adapted the levels & amt & what he could tolerate the best. Do you swim?
I feel bad for you re your fatigue is really getting to you. As I shared before, its Marks main issue after 7+ yrs. From my perspective as spouse its truly like a roller coaster. He worked F/T up until a month ago, it finally took its toll. He was having more episodes of fatigue . He (we) have never found the answer to that issue. If you could lighten your load give yourself some time, even try a differnt one of the drugs.
Can you adjust your work schedule for awhile until you get to feeling better? there is something called Family Medical Leave Act basically you get up to 6 wks of unpaid leave & keep your job. Maybe you could cut back your hours for a few months and see if it helps.
Posted 16 September 2013 - 05:55 AM
For me, it's up and down - but what I've found is if I push myself really hard, then I REALLY feel it a few hours afterward and it will slow down the rest of my day considerably. My recommendation is that you ease up just a bit on the gym routine and save some fuel for your workday - maybe try 3x/week for a little bit.
The fatigue is a very common side effect from treatment. Also, take a look at the Red Blood Cell count and Hemoglobin levels on your CBC. Both of those levels were running pretty low for me at dx -- I was dx just a couple of hours after running a 5K road race and remember being sooo short of breath throughout the race -- and although I've recovered nicely over the past couple of years, they still run just a bit below the normal range. I'm sure that contributes to the fatigue, especially after a hard workout. It's all part of the "new normal".
Also -- what's your cardio routine at the gym? Rigorous cardio has been my personal fatigue-masker since I started on Gleevec 400mg 2-1/2 years ago. I'm a lifelong runner who converted to road cycling earlier this year and it really does wonders for fighting the fatigue -- assuming I don't overdo it. But, like you, I have a tendency to push things very hard on the road and I definitely feel the impact a few hours afterward, so when needed, I just scale back my weekly mileage and speed & strike a balance when my body tells me to. Work obviously needs to be a priority, so just try scaling back a little bit and see if that helps.
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Posted 16 September 2013 - 01:01 PM
Thank everyone for their response. I appreciate it very much.
Surprisingly, I woke up this morning feeling rested and much better. I just hope it continues. My office day generally gets started at 7:15 a.m. and goes til 6 or so in the evening.
Dan, I usually do 4 miles on the treadmill at 14 minute speed, 7.5 incline, some weights and another mile in between sets. I probably have been overdoing it for my age and diagnosis so I plan cut back and see how I feel. Actually, I was so tired yesterday that I did not darken the gym door so maybe getting up today and feeling more rested was a sign to cut back.
Appreciate any feedback and ideas. Since this is the first year of my journey with CML, I am feeling my way about what I can or should do
Posted 16 September 2013 - 07:28 PM
Wow, that's definitely a rigorous workout - I'm impressed. I hope I can be in great shape like that when I'm 59! :-)
Dan - Atlanta, GA
CML CP Diagnosed March 2011
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