3 replies to this topic

[scuba]

http://www.news-medi...use-in-CML.aspx

 

As TKI use increases through time, safety profiles are emerging on how treatment should be conducted. It is very important that Oncologists dispensing these drugs LISTEN to their patients, track their side effects and be prepared to lower dose, interrupt dose or switch drugs so that the dangers of TKI use are minimized. An Oncologist insisting on full dose regardless of side effects, especially with the newer TKI's is putting their patients in danger:

 

"However, "some worrisome and unanticipated complications of therapy have recently emerged especially with the new-generation TKIs, such as metabolic abnormalities that may predispose to CVD [cardiovascular disease] and cardiovascular and pulmonary toxicities", she writes."

 

"Noting that many of the complications reported are thought to be influenced by patient characteristics and dependent on the TKI used, Rea therefore concludes: "[I]ndividualized risk assessment integrating both CML and patient characteristics should strongly influence treatment choices and clinical management.""

[Gail's]

If only one could legislate logic and compassion, scuba!

[Tedsey]

So happy I have an appointment next week with a pulminologist.  Ironically, the immedicate care doc I saw said I should just cut to the chase, in her words, "These drugs are too new.  We don't know what the long term effects are.  Make an appt. with a lung specialist, not an internist."  I was shocked that she was so informed.  However, for an obscure disease, CML has made headlines.  I assume most have read about it.

 

There is an audible crackling (honestly, it sounds like velcro being pulled apart slowly) when I breathe.  It is called "rales".  This is not right, but my kids find the sound facinating.  I can only believe that I am on too high of a dose of dasatinib and since I come out with what may be false positives or "noise" at <.001 or <.002, I think it is worth a try to reduce my dose.  But like I said before, the onc wants me on 100mg and and doesn't want to touch the lung thing.   She just wants to treat the CML and the standard says to stay the course with 100mg.  Wish I had a full article to give her from a credible source.  Oh, did I mention I still have pancytopenia?  I am sure a reduced dose would help that too, plus still reduce the BCR-ABL so I can stay alive.

 

I need to stay with her because I don't have time with two little kids to sit all day at a Cancers R Us center.  She is at the only place I know of where I can be in and out.  How silly to sit all day for a blood draw and a feel of my spleen?  Nuts.  I'll rely on other docs for the other pulmonary or caridiac issues.  I would have to anyway.

 

I mean, if I get to live until old age, I have many decades left on these drugs.  This August 30th will be 5 years on straight 100mg Sprycel with no interruptions.  I think this is the point where lung issues commonly start rearing their ugly head.

 

Tedsey

[scuba]

If only one could legislate logic and compassion, scuba!

 

This is why I do my own research and work with my Oncologist in a 'collaborating' fashion. I challenge everything they tell me (in my mind and then in polite conversation). I am doing a lot of cross referencing with other fields related to cell biology and immunology - solid as well as non-solid tumors (Leukemia's). It's been a very interesting education. 

 

TKI's have been a life saver - but only because our immune systems have gotten out of whack relative to the cancer. It's either genetic or induced (environment/deficiency). We're told over and over that CML is not genetic (we're not pre-disposed to it). It's that supposed fact that led me to research everything about factors that induce a cancer (radiation being one of them) and what in our bodies prevents detection and control or eradication. A lot of my research is in regard to T-cells, spleen and lymphatic function and what they do and what we now know is needed for proper function.

 

We're exposed to "toxins" that are carcinogenic (cancer causing) everyday. Our bodies are remarkable in finding, catching and disposing cells gone bad due to these exposures. I believe - others disagree - that we can do things to augment our bodies natural ability to fight cancers - especially CML and that it is possible to put the Genie back in the bottle. Not for everyone unfortunately - but many of us. 

 

So my approach has been to utilize the TKI to get CML under control and then switch off the drug (because of the dangers of these drugs) and test my bodies ability to handle it. So far so good. If CML comes back while in MMR/PCRU - all of the data suggest STRONGLY that I will regain remission easily. The evidence presented was sufficient for me to take the "risk". My risk tolerance is high. 

 

I fear the drug more than I do CML, but that's just me. Others fear CML more and will never stop their TKI unless their doctor tells them to stop. But just look how over the years they (the medical community) change what they (the professionals) believe. 

 

I do feel that the research Oncologists are ahead of the curve (Drs. Druker, Cortes, Talpaz, etc.) - and even they disagree with each other on the significance of the data. Dr. Druker told me, "if it works, great - keep doing it". Dr. Cortes told me the same thing and added that "low" maintenance doses may be ideal (Trey's belief), but if stopping works - then stopping is best (but only with vigilant monitoring).

 

TKI's are dangerous chemicals. They interfere with the body (that's why we have side effects - some severe). But they are a life saver at diagnosis. We need to tread carefully on their use. As experience accumulates, we will learn more about their toxic profile (especially impact on the heart and other organs). So far, Gleevec is looking quite good - but the newer drugs are proving to have some significant problems. I suspect this is why Dr. Cortes lowered my dose from the start (he never started me at full dose; but at 70mg - and then quickly dropped me to 20mg. and not just because of myelosuppression.). I asked him why such a low dose (back a few years ago) and he told me he has seen dramatic results on low dose while avoiding many of the heart/lung issues using Sprycel). Dose is probably the biggest issue and still unknown with these drugs. 

 

I am thankful for TKI's. I am also thankful to be off of it. For now.