21 replies to this topic

[Dom]

Hi everyone,

I'm usually satisfied to hear my once say that the results look good, or tat they are down and trending down. But lately, because of this group, I've been collecting hard numbers on my pcr's.

So ...

In July 2014 -- 3.18
In October 2014 -- 0.91
In January 2015 -- 0.22
In May 2015 -- 0.12

These measures are for something called b2a2; my measures for b3a2 and e1a2 have always been 0.0.

I have no idea what these abbreviations mean. Apparently, b2a2 is the same as bcr-abl, and the other ones are also possible transcriptions of the 9-22 chromosome. Can someone explain what this means? What are the other transcriptions? Also, the numbers, are they percentages? Is it that in May 2015, .12% of the drawn blood showed the bcr-abl gene.

Also, my onc said that the destiny trials seem to be showing that if a patient achieves 0.0 in the first 18 months, and maintains 0.0 for two years, it will be safe to stop therapy.

[Trey]

That is close to MMR (.1% and "International Scale averaged" 3 log reduction) in less than a year.  If the first PCR was at diagnosis that is a good response overall.  It may not look as steep because your first PCR was not nearly as high as most start with.

 

TKI cessation success predictions are not so simple as your Onc has suggested.  There is less certainty about the variables.

 

You can read about b2a2 here (but b2a2 and b3a2 are just the names for the two most prevalent Philadelphia Chromosomes based on the point they break off the chromosome)

 

http://community.lls...ia-an-overview/

[Dom]

Trey, thanks for the link. Very helpful.

I was diagnosed in February 2014 from the pre-op of a cath / stent procedure. My bma was done in March because I was on blood thinners, and I started gleevec in late April because of complications with my insurance. I'm sure I've had blood tests since at least April, but I'm not sure why my on-line records begin in July and not earlier. I assume my first pcr was a good bit higher than the July score of 3.18.

So those numbers are percentages. Of what? Is it 3.18% of the blood drawn showed the bcr-abl gene?

[gerry]

Is the doc indicating TKI cessation success or indicating that Dom can safely have a go at stopping.

 

I remember reading a review of the Twister trials, the predication is around 5% of CMLers being able to stop, but that is due to the low level of people who achieve 2 years PCRU on gleevec. The second generation drugs should bring that percentage up.

 

Anyways, congratulations Dom on how you're going.

[Dom]

Gerry, he certainly doesn't think I can stop now. He believes that the current trials will produce a marker of some sort, perhaps a goal that has to be reached, which will allow one to stop. He thinks that will happen within the next two years of research.

[gerry]

Hi Dom,

I figured he wasn't talking about stopping now.   I was just talking semantics with Trey.

 

Would be good if they can determine the factors for stopping, at the moment they still talk about low sokal score contributing to success, but though I met this criteria, from what I remember Chris and Joel both had enlarged spleens. And though we don't hear from Joel, I figure he is still negative and past the two years of being off Gleevec.

 

I had my heart set on stopping in October 2013, but my doc made me wait another month, not sure what he was waiting for, since October was the two year PCRU. I guess I had to wait for him to be truely ready. lol

[Dom]

I guess I don't know your story, Gerry? Did you in fact stop in 2013? If so, Kudos!

[gerry]

Took my last Gleevec tablet on 19/11/2013.

 

Energy is finally getting back to normal after 18 months. I've just had my blood test done last week, will get the results in a couple of weeks, hopefully another negative.

[Dom]

Good for you! I'm hoping you get a low too!

I have to say, I get no side effects from gleevec at all. I pulled a leg muscle three weeks ago, and I'm still using a cane, and that was just from twisting the wrong way, but my onc said neither gleevec nor cml could be the culprit. I want off of gleevec because I'm going on private insurance soon, and well ... $$$$$$

[gerry]

Hi Dom,

 

I found just stretching could do damage, still carry an injury in my calf and thigh muscle from the Gleevec. Recovery from injuries seems to take longer as well when you're on Gleevec. I went down to 300mg Gleevec after a year of PCRU and noticed the difference.  

 

Side effects got worse for me as time went on, though I doubt they were as bad as it is for some of the CMLers. I just didn't want to be on the Gleevec any longer than I needed to be. That was also why I dropped to 300mg as soon as my doc was okay with it.

 

Totally understand why you would want to come off the drug, I'm not sure how I would have gone if Australia didn't have subsidised health care.

 

I'll keep my fingers crossed that your numbers continue to fall.

[CallMeLucky]

Doesn't seem like your onc knows a whole lot about cml. Muscle problems are absolutely a side effect of Gleevec. This is documented and most who have been on it will corroborate . The only ones who seem to refute this are oncologists who've never taken the drug.
He also shouldn't be setting your expectations for stopping treatment at any point. The odds are you will do very well as most of do and maybe at some point you will be able to consider stopping treatment , but unless your dr has a crystal ball he should not be making claims like that, at best he's guessing.

[Gail's]

My onc has denied gleevec being responsible for nausea, dizziness and fatigue (all known side effects) but told me muscle aches and strains are well known to be a side effect of it.

[Billie Murawski]

When I was on Gleevac I had terrible muscle spasms in my legs once I started taking Magnesium they completely went away. I'm on Sprycel now, I don't get any spasms, but about the last four months I get a lot of joint and muscle pains, usually after I'm up a couple hours and moving around it gets a lot better. Right now I'm having a terrible time with headaches and some of them are migrains "I know the difference" I just had a bad one that lasted 3 days. I can only take tylonal but I don't want to take to much. Onc and Cardio doc said no alleve. I guess I should have checked with them before I bought it. My new glasses are ready so maybe that will help my head. I've been staying off the computer and not playing any video games, So I figure I'll be cured by Friday. I don't want to go off Sprycel

[Dom]

Just to defend my oncologist ...

He didn't really say that I will be able to cease gleevec, he just said that there are multiple lines of research that, in my life-time, will change the protocol for treating cml, and I might be a candidate for cessation.

Concerning the muscle tear, he weighed the options. On the one hand, I'm 63, spent years doing moderate to hard biking tours, and I twisted my leg while standing in the shower. On the other hand, gleevec causes muscles and joint pain. He went with the first option. He's quick to point out that my monstrous acid reflux is a side effect.

Btw, the tear is healing, but not as quickly as I would like.

[Gail's]

Billie, glad you're back and hope your head is better today. Dom, I get it. Oncs are people too. I find it funny that my doc works so hard at dismissing gleevec as a cause of almost anything but didn't even ask me about whether my muscle aches could be related to overuse. Which they weren't. I'm doing magnesium and the aces are better. Hope your injury picks up the pace and heals soon.

[Trey]

Dom,

Make sure you are taking mineral supplements and eating foods high in minerals.

[Dom]

Gail and Trey, I appreciate your advice. Can I get some specifics? What kind of mineral supplement do you recommend? Foods? This leg problem is getting me down. I don't know what I'd do if I can't go on another bike tour, or take long walks in the park.

[Trey]

A good multi with minerals would work.  You need calcium, potassium, magnesium, phosphorous, and other trace minerals. Cheese is a good source of these minerals.

[scuba]

Just to defend my oncologist ...

He didn't really say that I will be able to cease gleevec, he just said that there are multiple lines of research that, in my life-time, will change the protocol for treating cml, and I might be a candidate for cessation.

Concerning the muscle tear, he weighed the options. On the one hand, I'm 63, spent years doing moderate to hard biking tours, and I twisted my leg while standing in the shower. On the other hand, gleevec causes muscles and joint pain. He went with the first option. He's quick to point out that my monstrous acid reflux is a side effect.

Btw, the tear is healing, but not as quickly as I would like.

 

Dom,

 

I developed the muscle pain when I started Gleevec back in the day. I was told to take Magnesium (Citrate or Taurate) as TKI's cause the body to use up more Magnesium than normal. My muscle ache disappeared within a week. I haven't had it since (after years taking a TKI). 400mg per day did the trick for me. I don't take a TKI anymore, but I still continue the Magnesium. 

[AllTheseYears]

My onc has denied gleevec being responsible for nausea, dizziness and fatigue (all known side effects) but told me muscle aches and strains are well known to be a side effect of it.

Gail, I think your doctor should take a minute to read the list of side effects that are attached to the bottle of Gleevec (or just go online). Nausea and fatigue are fairly common side effects.  Dizziness and muscle aches are also on the list. I can truly say, as one who has taken Gleevec for 13-plus years, all of the above ARE side effects of Gleevec.  Side effects can vary person to person.  I personally find it difficult to know what to label as a side effect of Gleevec or to call another illness (say a cold).  Over the years of my therapy, I've learn to ignore what anyone tells me is or is not a side effect.  If I'm convinced something else is going on, I press for an answer.  I can't forget that it took soooo long to get a CML diagnosis because doctors attributed my symptoms to various other causes without much research —  rather than to actually listen to me.