My apologies if this has already been posted. If you have a few extra minutes you might enjoy this talk from one of my favorite doctors. He did fumble his ending, he meant to say sunrise not sunset.
https://player.vimeo...9?wmode=transpa
Posted 10 February 2017 - 11:57 AM
My apologies if this has already been posted. If you have a few extra minutes you might enjoy this talk from one of my favorite doctors. He did fumble his ending, he meant to say sunrise not sunset.
https://player.vimeo...9?wmode=transpa
Kirk
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
Posted 10 February 2017 - 12:42 PM
Nice Kirk, thank you.
Mike
Posted 10 February 2017 - 01:41 PM
Wow, talk about a feel-good speech! He zeroed in exactly where my thinking (and feelings) are. I'm so glad Dr. Druker was born!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 10 February 2017 - 02:15 PM
Posted 10 February 2017 - 03:12 PM
Sounds like Mr. Scuba's immune system beliefs might have some official support!
Cells are biochemical machines. The 9 and 22 chromosome are so tightly packed right at region q34 on chromosome 9 and region q11 on chromosome 22 that it is any wonder that there isn't more CML in the general population! Bcr-abl oncogene is so easy to form. The reason so few get CML is because their immune system destroys the flaw. This is normal. One bcr-abl cell does not create CML. It takes a lot more than one.
We experience many such translocations. They occur all of the time. Most are benign. But bcr-abl is not. It requires an immune response to check. It's any wonder we evolved at all. But the fact remains that when a cell goes screwy, there are immune system checks in place. The mighty T-cell (NK killer cells in particular) identify aberrant cancer cells and kill them. Do they kill them all? Probably not necessary as long as the immune response is working. Only when a sufficient number of cells expressing an increasing amount of unique protein does the body respond. The mechanism is not unlike how we get a sneezing attack (histamine) when pollen is in the air. It takes a certain amount of pollen to trigger. Some people trigger lower than others (hay fever sufferers). Some don't trigger at all.
I have long believed bcr-abl oncogene forms all of the time (naturally (spontaneous) and with inducement (radiation, other forces)) in the human population. It's obvious to me why this particular translocation occurs given how the two chromosomes are packed in the cell. The number of cells produced naturally like this are so low that they would never show up on a PCR test. In other people, enough cells may get going that they might show up on a PCR test but not progress. But for some of us - those who can't control the bcr-abl translocation, we proceed to cancer.
Getting our immune system to once again or for the first time recognize bcr-abl and delete it or control it is the pathway to "cure". In the same way a mumps vaccine prevents mumps - even if the mumps virus shows up again and again in our body, the vaccine has activated our immune system to recognize Mumps when it sees it. An activated immune system against bcr-abl will confer lasting, if not lifelong, immunity against CML.
This is why I don't believe that killing all of the CML cells, stem cells included and then removing the drug which led to CML cell eradication will lead to a cure. A spontaneous re-creation of bcr-abl can easily occur. It would be a new disease. In the absense of a TKI-like drug, CML will re-start. Only an immune "fix" will enable sentry against CML.
Immunotherapy is an exciting area of research right now.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Posted 10 February 2017 - 04:29 PM
Posted 10 February 2017 - 07:17 PM
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 10 February 2017 - 09:00 PM
I can't open this...I have a Macbook pro....is it on utube does anyone know? Thanks Red Cross Kirk
Try this link, maybe it will work for you: https://vimeo.com/200932359
Kirk
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
Posted 11 February 2017 - 10:24 AM
Posted 12 February 2017 - 01:32 AM
Thanks for posting. Very interesting.
Posted 14 February 2017 - 04:21 PM
Sounds like Mr. Scuba's immune system beliefs might have some official support!
While the side effects of the TKIs kind of stink, I think I have been healthier while taking them. I can only recall having one cold since being diagnosed in 2013.
Posted 14 February 2017 - 04:58 PM
Interesting that you say that, because I've felt the same way. I haven't had any antibiotics since before diagnosis, and it used to be at least twice a year prior to that.While the side effects of the TKIs kind of stink, I think I have been healthier while taking them. I can only recall having one cold since being diagnosed in 2013.
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