33 replies to this topic

[scuba]

M,

 

If you want to say "it's not the fall that gets you, it's the sudden stop", then I understand your meaning.  Otherwise, I do not.  But it is a technical issue, not a substantive one.

 

My interest is your well being.  If it were me, I would not jump into stopping the TKI so soon.  I say keep the bass-turds on the run.

 

 

Trey,

 

I like Bass ... don't much like Turds. So ... 50 - 50 eh?

 

I fully understand where you are coming from. I just have a feeling that I can keep CML at bay without a TKI on a six week to six week basis for a while with a chance that it will go 3 months to 3 months and then longer. I won't know until I try.

 

I have a few weeks left before I have to make the decision. I may chicken out, but right now, I'm goin' for it.

[scuba]

I stopped treatment 6 weeks after reaching PCRU (~4.5 log reduction) when we tried for a pregnancy. But for my age we would have waited much longer. As expected I relapsed straight away. Also as expected I regained response although it took over a year to get back to where I was. If your ultimate aim is to live without treatment the best odds recommend that you sit tight for a while longer. It's a boring thing to do. 

 

Normally to get from a theory to a human trial is a long drawn out process (& for good reason). It is kind of exhilarating to be able to just "see what happens". However, a trial of n=1, particularly where the n=1 has had such an unusual response to treatment, is not going to change the way CML is treated any time soon. So what ever you do is all about you. If you do stop we'll all wish you well and be interested to see what happens, but you should forget the excitement and do what is best for you.

 

N=1 ... that's a great way of looking at it. I'm just reporting here what I am doing ... not a suggestion for others to follow.

 

But if I had listened to my first Oncologist, I would be on 140 mg. Gleevec with Stim shots in between.

[Trey]

JJG,

 

You are definitely an n=1.  Michael is an n=0.  Just sayin'

[scuba]

JJG,

 

You are definitely an n=1.  Michael is an n=0.  Just sayin'

 

Yep - PCR = 0. Spot on.

[Marnie]

Add this to your data bank if you want. . .after not quite 2 months off of Sprycel because of pleural effusion, my PCR numbers went from undetectible to .18.

 

Restarted my Sprycel 5 minutes ago at 50 mg and glad to be back on.  I seem to be one of those people who is not able to achieve a deep response.  On Gleevec, I didn't get anywhere, and on Sprycel, I have trouble maintaining a balance between low level/undetectable and pleural effusion.  It's a delicate balance.

 

Marnie

[scuba]

Hi Marnie - I suspect the same will be true for me, but I have to try. As you noted, after 8 weeks you went to 0.18 still near MMR. No doubt re-starting Sprycel will take you back down again. I will only go six weeks without Sprycel and see how high my level rises. Hopefully it won't rise at all.

 

For what it's worth - the reason I take Curcumin is so I can achieve a great response while taking a very low dose of Sprycel. I am able to achieve this response on only 20mg Sprycel. I strongly believe taking Curcumin for me augments Sprycel's effectiveness (enhances) as it is documented to have done in other cancers (http://www.ncbi.nlm....pubmed/21774804).

[August1]

Congratulations, Scuba.

Great to hear. 

[Damerault]

Can I go back to the statement; " I had a massive eye bleed."? Have other's experienced this while on TKI drugs or with a low PLT Count? I did and when I went to the ER they told me it was just a coincidence even though I never had one before. My Hematologist also agreed this was a coincidence. I disagree and was very interested to see this noted here. 

[Melanie]

Congrats Scuba on reaching such a milestone on your terms. You know your body best and it's been interesting to follow your plans and progress. It shows that the "standard" treatment can be modified with success if the response is suboptimal or cytopenias become an issue.

Antilogical,
"My hem/onc indicates that they've been evaluating patient responses to meds, and they've learned that a deep and stable response may be just as beneficial as a complete response. A patient whose CML is detectable but stable will not succumb to the disease any sooner than a patient that is PCR-U."

My hem/onc told me this same thing and that it's now being recommended that if you are stable and still have low PH + and PCR at 1% or lower, they now stay the course with existing treatment. This is for slow responders only, who have tried multiple TKI's and have finally been stable and able to stay on a TKI for at least 18 months. I think this is good news for us slow responders! More food for thought on what level of disease is tolerable without progressing into accelerated or blast phase.

[Trey]

Damerault,

 

Curcumin (aka tumeric) is a "blood thinner" of sorts.  Pat seems to think the massive eye bleed she had was likely related to her starting curcumin.  I would say that is very likely.  Both TKI drugs and curcumin together can result in decreased clotting ability.  The following article says curcumin "stops platelets from clumping together to form blood clots."

Turmeric | University of Maryland Medical Center http://umm.edu/healt...c#ixzz3EAzPaIaB
University of Maryland Medical Center

 

If anyone wants to read what one of the biggest researcher cheerleaders for curcumin says, here is a link:

http://www.curcumin...._Solid_Gold.pdf

 

I would note that the above reference says that most research is done using curcumin injection, but most people who use it medicinally take it orally.  Michael may even use it aborally, but I cannot confirm.  (Thanks again to Tedsey for teaching me that word aborally, which mean "other than oral", so it goes in another orifice).  Anyhoo, where was I?  Right, I was saying that taking curcumin orally results in a different molecular structure than if injected, since digestion changes the properties significantly.  It is also very difficult to get the active ingredient (whatever that might be -- no one knows) into the white blood cells, which is the only place it can work for CML, if indeed it works at all. 

[scuba]

Damerault,

 

Curcumin (aka tumeric) is a "blood thinner" of sorts.  Pat seems to think the massive eye bleed she had was likely related to her starting curcumin.  I would say that is very likely.  Both TKI drugs and curcumin together can result in decreased clotting ability.  The following article says curcumin "stops platelets from clumping together to form blood clots."

Turmeric | University of Maryland Medical Center http://umm.edu/healt...c#ixzz3EAzPaIaB
University of Maryland Medical Center

 

If anyone wants to read what one of the biggest researcher cheerleaders for curcumin says, here is a link:

http://www.curcumin...._Solid_Gold.pdf

 

I would note that the above reference says that most research is done using curcumin injection, but most people who use it medicinally take it orally.  Michael may even use it aborally, but I cannot confirm.  (Thanks again to Tedsey for teaching me that word aborally, which mean "other than oral", so it goes in another orifice).  Anyhoo, where was I?  Right, I was saying that taking curcumin orally results in a different molecular structure than if injected, since digestion changes the properties significantly.  It is also very difficult to get the active ingredient (whatever that might be -- no one knows) into the white blood cells, which is the only place it can work for CML, if indeed it works at all. 

 

I disagree with this on so many levels - where to begin ... 

 

Trey refers to studies of Curcumin "in vitro" which literally means in the glass or outside the body. In vitro studies are interesting but not conclusive for Clinical work. What is important is "in vivo"  studies which translates literally into "within the living" as in - inside the body:

 

Milacic V, Banerjee S, Landis-Piwowar KR, Sarkar FH, Majumdar AP, Dou QP. Curcumin inhibits the proteasome activity in human colon cancer cells in vitro and in vivo. Cancer Res. 2008 Sep 15;68(18):7283-92.

 

Many Curcumin studies have been done "in vivo" with clinical significant results. The key is absorption. Which is why I take 8 grams of the stuff. The 3 metabolites are clinically significant. As far as getting into white blood cells - it is the plasma concentration that is important - significant to down regulate the CML function causing apoptosis.(http://www.aacrmeeti...2005/1/1208-c).

 

It is precisely the impact on CML white blood cells that is encouraging about Curcumin.

 

No matter - Trey doesn't believe. So he doesn't take it. I do - and have achieved "undetected" with only 20 mg Sprycel with zero side affects (that I feel). A non-scientific test comes in 5 weeks. Maybe it's a placebo effect. That's o.k. with me.

[Darlene_Jack]

Scuba, I am new to CML and this site. So much information. I am interested in your journey of how you got to this point. I was on Sprycel for a year. Recently developed pulmonary hypertension. I have to get cardiac clearance before I can start a new TKI. Possibly Gleevec or Tasignia. I'm 42 and already exhausted. Mentally I'm tired already. I'm thankful to have found his site. I feel I now have people that understand the daily battle. I'm hoping it gives me the strength to battle daily.

[scuba]

Hi Darlene,

 

We all had the "new to CML" start and know exactly what you are going through. A great place to start is to read Trey's blog on CML:

 

http://treyscml.blogspot.com/

 

Trey may comment on additional information he may have as well.

 

Pulmonary hypertension is a significant problem with Sprycel. Adjustment to dose or a different TKI may work. What is your current status in terms of PCR and cell counts?

[nia.435]

Congratulations Scuba!  Its a great milestone, considering your journey.

 

Vanessa