For patients in chronic phase (CML) who are resistant to imatinib and possibly other drugs. No transplant requirement.
Locations:
http://www.cancerres...aemia#undefined
Posted 13 June 2016 - 12:59 PM
For patients in chronic phase (CML) who are resistant to imatinib and possibly other drugs. No transplant requirement.
Locations:
http://www.cancerres...aemia#undefined
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
Posted 14 June 2016 - 06:53 PM
Posted 14 June 2016 - 07:24 PM
This is a follow up to the "CML vaccine" studies from about ten years ago. I was part of those initial clinical trials. It seeks to train the patient's own T-cells to recognize and attack leukemia cells by noting that those cells have more WT1 than normal cells. It is a matter of having more WT1, not just having some. In this version of the trial they are bio-engineering the T-cells since the original trials did not attain the desired results. This trial has a reasonable chance of success in some patients. Worth watching.
Posted 14 March 2017 - 06:11 PM
Just curious. Why are these trials not starting on this side of Atlantic? I see a lot of cure based trials happening in France /Europe (Hybrigenics, Immunotherapy, University of Glasgow in forefront of research finding cures for CML etc.).
I feel somehow we are lagging behind in the US despite the being top of the line in the world. Is it by design? There is a lot of incentive to keep drugging us with TKI's until the side effects overwhelm you due to over treatment and of course aging is an other issue that can make this worse. it is more profitable than finding cure? Hardly there is any incentive for big pharma to cure.
I have not seen so many combo trials or LSC based trials in the US compared to Europe. May be I am missing something.
Thoughts???
Posted 14 March 2017 - 07:25 PM
Some of the reason is the other countries have National health care systems. Here in Australia tax payers contribute towards the costs, unfortunately down the track all the baby boomers will have retired and we will have less contributors towards the health care system. UK, France, Canada etc face similar issues, so finding a cure or at least being able to have some be able to stop their meds is the best answer.
Posted 14 March 2017 - 08:27 PM
This research is done partially by The Cell and Gene Therapy Catapult, Guy's Hospital, Great Maze Pond.
Now, I don't know, but any company working at something called "Guy's Hospital" may not work for those who are girls. And they are near "Great Maze Pond" which cannot be a real thing. A pond cannot hold a maze in place long enough for a person to work their way through it. And they are located near London Bridge, which is now in the western US due to a chain saw magnate who brought it here stone by stone and reassembled it, because it was "falling down". So anyone who says the US cannot do great things, they can just eat our chain saw dust.
And anyone who tries to catapult genes might end up with the following:
https://www.youtube.com/watch?v=JQ8jGqdE2iw
It does not end well.....
Edited by Trey, 14 March 2017 - 08:33 PM.
Posted 15 March 2017 - 01:58 AM
Posted 15 March 2017 - 05:13 AM
There are immunotherapy trials ongoing or starting in the US but most require a transplant at this time. I'm sure more trials without that requirement will be in the future.
There are medications being looked at in the US that also target the CML stem cell, none of these are going to be available any time soon though.
As for corporations making money, that is the business they are in, if you were making billions a year on a medication, wouldn't you do everything in your power to make sure that continued? If you were the CEO of a major corporation and you didn't feel that way, I'm sure the board could easily find someone that does.
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
Posted 15 March 2017 - 02:39 PM
Well I do not dispute capitalism. However even if you look at CML as a disease majority of patients are not reaching MMR or CMR after years of treatment. About 10-20% reach these milestones with 1st, 2nd and 3rd generation TKI. However many are struggling with inadequate response or unbearable side effects, comorbidity risks with increasing age and duration of treatment.
While it is certainly better than death sentence before advent of Gleevec it is still a huge struggle for a large section of CML sufferers. I fall in that category.
So I am able to appreciate what they are doing on the other side of atlantic better. It is better to try something rather than to completely give up on 80% of not so ideal responders.
Accelerated and Blast Crisis we cannot even speak of right now.
Posted 16 March 2017 - 11:30 AM
I thought a much greater percentage than that reaches MMR, which is Major Molecular Response or MR3 or 0.1% IS, take your pick of definitions. No more than 10-20% of us reach that, really?
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 16 March 2017 - 06:48 PM
I thought a much greater percentage than that reaches MMR, which is Major Molecular Response or MR3 or 0.1% IS, take your pick of definitions. No more than 10-20% of us reach that, really?
Tyrosine kinase inhibitors (TKI) have changed the natural course of chronic myeloid leukemia (CML). With the advent of second-generation TKI safety and efficacy issues have gained interest. The randomized CML - Study IV was used for a long-term evaluation of imatinib (IM). 1503 patients have received IM, 1379 IM monotherapy. After a median observation of 7.1 years, 965 patients (64%) still received IM. At 10 years, progression-free survival was 82%, overall survival 84%, 59% achieved MR(5), 72% MR(4.5), 81% MR(4), 89% major molecular remission and 92% MR(2) (molecular equivalent to complete cytogenetic remission).
https://www.ncbi.nlm...pubmed/25676422
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Posted 16 March 2017 - 07:20 PM
Yeah, that's what I thought - that's more like it.
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 16 March 2017 - 08:22 PM
The numbers quoted here in that study for IM only. So the percentages are for the baseline of 965 patients who are good with IM. The numbers do not apply for patients who are resistant or intolerable to IM which is again a sizable population of CML patients. The long term side effect profile for 2nd generation and 3rd generation TKIs are not that favorable compared to IM.
My oncologist says IM is the best choice if you happen to be the lucky one for whom it works the best. But then there are many many patients who are intolerant to IM and IM non responders in the CML patient population.
10 year ADR on IM is great without a doubt. We do not have 10 year ADR on Nilotinib or Sprycel as yet. The risk of developing cardio toxicity side effects are way much higher with 2nd generation TKIs compared to IM and that is concerning to many doctors today as much as patients of CML.
We are anyway lucky to have a 10 year conversation with the advent of TKI. We definitely have come a long way without any doubt. 10 years back this thought would be a science fiction.
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