23 replies to this topic

[Floa7]

My son went to the doc this morning. He has been undedectable for 2 years. I asked her about stopping his Sprycel or reducing his dosage. She said it was better to stop the Sprycel then to reduce it. He could build up a resistance to the Sprycel.

I have 8 more months to go for my 2 year mark of undedectable and I am on Tasigna for now.

[scuba]

"She said it was better to stop the Sprycel then to reduce it. He could build up a resistance to the Sprycel."

 

She should have her license revoked. Truly incompetent. Find another doctor.

[Trey]

The TKI drug resistance issue has been abandoned by all serious CML Specialists and most regular Oncs.  But some have not yet learned this.  Too bad, it is a harmful myth.

[MarCap73]

My son went to the doc this morning. He has been undedectable for 2 years. I asked her about stopping his Sprycel or reducing his dosage. She said it was better to stop the Sprycel then to reduce it. He could build up a resistance to the Sprycel.

I have 8 more months to go for my 2 year mark of undedectable and I am on Tasigna for now.

 

This is a bit off topic but the first I have heard of of a parent-child both having CML.  

 

All the reading I have done says that there is little, to no evidence of the hereditary passing of CML.  Have any of you long term posters, Trey, Scuba, etc. seen other posters with multiple family members? Parent-child, siblings, etc?

[rcase13]

Unless they were both exposed to the same environmental condition that caused it. 9/11 comes to mind as well as radiation sources.

[r06ue1]

As my Oncologist told me when I mentioned to him about Audrey (RIP); "Better have them check the water".  

 

Benzene has completely polluted our environment, it is everywhere, from car exhaust and gasoline/diesel fumes (or even getting the liquid on your skin) to our water and our food/beverages.  Do a search on Benzene in soft drinks as just one example.  

 

If they use well water, which many people do in rural areas, it could be in their water supply.  Water filters generally filter out the Benzene in water.

[Floa7]

The TKI drug resistance issue has been abandoned by all serious CML Specialists and most regular Oncs.  But some have not yet learned this.  Too bad, it is a harmful myth.

Both of us had to stop the Gleevec, it stopped working. Possibly the word was not resistance that she used. This brain fog we get on these Chemo pills..... When I typed that it took me 10 minutes to come with resistance.

 

And for both of us to have CML, two other neighbors were diagnosed within 6 months of us. We are all on well water and had the big flood of 2008 Also their is lots of industrial factories close to us. We got CML in 2012. I have 8 more months to go undetected for my 2 years

[r06ue1]

Sounds like a big lawsuit to me but that is just my opinion.

[rcase13]

In that case I would say for sure it is the water. A lawsuit needs to happen. It is the only way to find and stop the company that is causing the problem.

I too am on well water but we had it tested and no contamination was present.

[MarCap73]

And for both of us to have CML, two other neighbors were diagnosed within 6 months of us. We are all on well water and had the big flood of 2008 Also their is lots of industrial factories close to us. We got CML in 2012. I have 8 more months to go undetected for my 2 years

 

Wow.  Definitely sounds like an environmental factor.  Way too many people to be coincidental.  That's definitely a cancer cluster.

 

I hope that you continue to see good progress!  

[Floa7]

The TKI drug resistance issue has been abandoned by all serious CML Specialists and most regular Oncs.  But some have not yet learned this.  Too bad, it is a harmful myth.

Once tolerance or resistance has developed to a drug, doctors may increase the dose or use a different drug.

 

That is what my onco did used a different drug Tasigna. The gleevec stopped working, I was RESISTANT to the Gleevec. After a 1 1/2 years going down to 0.002, It rose to 8.0 The Gleevec stopped working.

[rcase13]

Yeah I guess I don't understand. Many people stopped Gleevec because they became resistant to it. What causes that resistance or is their another term to explain it?

[Floa7]

Well Scuba or Trey you don't seem to have an answer for us

[Buzzm1]

My son went to the doc this morning. He has been undedectable for 2 years. I asked her about stopping his Sprycel or reducing his dosage. She said it was better to stop the Sprycel then to reduce it. He could build up a resistance to the Sprycel.

This discussion began when your apparently uninformed oncologist suggested that your son could develop a resistance to Sprycel due to dosage reduction.  

[gerry]

If I was your son, I would probably have a go at cessation. But as there seems a possibility of something else going on in your environment, in that the two of you wound up with CML, I would want close monitoring.
As to a lower dose causing resistance, I'm not too sure about that. I was on 300 mg Gleevec for a year prior to stopping and have now been off a TKI for over two and a half years and (touch wood) still remain negative for CML.
I don't doubt the potential of CML to become resistant to a TKI.

[thatguy]

Once tolerance or resistance has developed to a drug, doctors may increase the dose or use a different drug.

That is what my onco did used a different drug Tasigna. The gleevec stopped working, I was RESISTANT to the Gleevec. After a 1 1/2 years going down to 0.002, It rose to 8.0 The Gleevec stopped working.

I believe what Trey was referring to was resistance occurring from lowering dosage, not that resistance doesn't occur for any other reason, because it does obviously, and he's mentioned it more times on here in some fashion, than we've probably logged on.

[rcase13]

I understand that dosage amount may not cause resistance. But what does cause resistance? I guess erratic adherence?

[thatguy]

I understand that dosage amount may not cause resistance. But what does cause resistance? I guess erratic adherence?

My opinion: (based on reading and no training or professional research)- yes, spotty adherence, absorption, physiological traits of the bonding points, disease' ability to adapt, and dietary habits, supplements and other medications....(somebody's welcome to correct me on phrasing or any of that)...that said, it would be contradictory, to then say lowering dose COULDN'T cause resistance, because several of those items' premise for causing resistance relates to the amount of drug making its way to the blood stream and then to its target site, and then being potent enough to be effective in its intended purpose.

If these cells are living, which they are, it would make complete sense in this layman's mind, that routinely subjecting these cells to an environment, (our blood) that isn't necessarily "hospitable", but not toxic (saturated with tki) , could allow or provoke the diseased entities to adapt/mutate to obtain survival.

Those of us concerned or passing blame for the disease toward benzene and radiation exposure, might embrace this idea more, as this would likely be how the disease initiated. Repeat exposures- although not enough or potent enough to kill us immediately, were enough to cause a mutation, and the disease..


Eh.

Possibly those with lower disease amounts within their bodies, are successful on lowering dosage, because the ratio remains correct of drug:disease. If someone with more leukemia stem cells or more active ones, reduced dosage, it might not "keep up" ? I don't know. So once at pcru or very, very low, the disease amount is lessened, and likely to a point that the drug:disease ratio can be sustained fine with a lower dose, but it is pretty much a guess what that "safe dose" is.


So me, with my paranoia and logic, (and slower initial response) will elect to stay on a recommended dose of a tki, so long as it's safe, viable and attainable, without argument.

[r06ue1]

Definitely have your water checked, if it is contaminated, it could lead to other types of blood cancers.  Water filters are supposed to filter out Benzene so if you don't have them, might want to pick some up.  

 

If you do a search on Benzene in well water, you will find tons of articles about contaminated well water.  Also, fracking has lead to many well water sources becoming contaminated with Benzene.

[rcase13]

I'm with thatguy... LOL I will stick to what they give me.