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Non-Detectable (0.000%) and potential cure for CML

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Received my test results yesterday evening and finally hit ND (0.000%) after 3 years and 9 months. 

Results of all tests since diagnosis:  

I want to highlight two area in the above chart, the first is in italics from 03/05/2018 through 06/05/2018.  There was a slight bump up during this period and then a large drop (MMR to CMR) afterwards, the reason for this may have been due to an experiment my doctor and I tried.  I stopped taking the experimental medication after the drop to CMR (due to side effects) and stayed stable at CMR for the next two testing cycles. 

The next change is underlined in the chart above dated 12/03/2018 through 06/10/2019.  After the 12/03 test I decided to go back to trying the experimental medication once again and did so for about two months during that window and the result was Non-Detectable.  A few notes about this six month time period: 

-  My daughter was put in preschool during this time and was always getting sick which of course resulted in me becoming sick.  I missed a lot of doses of medicine during those sick periods and also missed my dose the night before my blood test (forgot).  I would say that overall, I likely missed about 20 doses during that time. 

- I took the experimental medication around the March and April time frames and stopped taking it once again due to the side effects.  

Drug Details

Medication:  Misoprostol
Dose:  200 mcg
Availability:  Prescription only (yes, it is and has been widely available for some time)

Details of when and how much I was taking and the side effects: 

03/05/2018 through 06/05/2018 (began in February, ended in April)

1 times daily, 4 x 200 mcg at the same time as taking Imatinib dose (nightly, before bed).  

12/03/2018 through 06/10/2019 (began in March, ended in April)
1 times daily, 8 x 200 mcg at the same time as taking Imatinib dose (nightly, before bed). 

The typical dosage is to take one 200 mcg tablet (if you can call it that) every four hours.  This is the standard dosage for people with ulcer problems.  This medication is also used for abortions (in a higher does, which happens to be 1600 mcg which I was taking later on).  Since I was not taking the medicine for ulcers, I decided to take the four doses (later eight) all at the same time as my Imatinib to increase the chance of it working.  

Side effects: 

Serious bouts of diarrhea (far more serious than with Imatinib).  I eventually stopped taking it on nights before I had to work the next day and only took the Misoprostol if I knew I was going to be home the next day. 

Bouts of dizziness.  I am not 100% certain this was from the Misoprostol or the blood pressure medication I was also taking at the same time.  The blood pressure medication (Losartan - HCTZ 50-12.5 mg) does have an interaction with Imatinib and I stopped taking it around the same time as I stopped taking the Misoprostol.  I intend to take the Misoprostol again in the future and will update with any results. 

So why Misoprostol?  

It all began almost two years ago when I stumbled on an article (https://www.news-medical.net/news/20170926/Existing-drugs-may-be-able-to...) which made mention of two drugs which were currently available possibly being used to cure CML by eradicating the CML stem cells.  I investigated the two medications and found Misoprostol to be the safer of the two.  I inquired the possibility of testing this out with my Oncologist and he prescribed three months worth of the medication to me.  

https://www.ncbi.nlm.nih.gov/pubmed/28844837
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5678929/

Now, there is no guarantee that this works, maybe my test results were just pure chance, maybe not, but after having been stuck at MMR for such a long time and reaching CMR (and DMR) after taking the Misoprostol, well, a sample size of one is not going to cut it so thought the best course of action would be to share these results with others.  I do not know if your doctor will be as willing to try this as mine was and prescribe a medication used to treat ulcers to treat your CML but I would hope that they might.  

I am going to continue to take my medication and try the Misoprostol from time to time.  I will also be looking to try TFR to see if this truly did work or not but likely will not attempt it until September or later.  

Edit:  The table feature does not work so had to create an image, store it on my blog and link it here.  If you cannot view the image, let me know.

Ro6ue1 - Fantastic!

I applaud your tenacity and experimentation. I was not familiar with Misoprostol and now I am.

Although what you did is not "statistical" in a clinical trial sense - I have a strong suspicion you are on to something.

I wonder - given that your doctor helped you on this - if you and he would write a paper for publication so that the greater community can try this approach even in the absence of a formal clinical trial. Clinical trials are expensive. There would be no value to a pharmaceutical company in conducting one. But patients and their doctors might be able to amass data leading to anecdotal success.

I am already PCRU (for over two years) - when I try TFR - if it fails, I will resume my drug, but this time adding misoprostol to the program. Could work!

Bravo on your effort!

I had the same experience on Misoprostol!  

After developing mutation Phe311Leu, discovered December 2018, I had to change to something other than Gleevec. My PCR in Nov. 2018 was 32% (IS).  I got very scared, especially because my doc didnt know what to do. 

I found the research on Misoprostol. He would not prescribe it so I purchased it without a prescription on line and started it with Sprycel in just before March 2019. By April 10, 2019, I got to PCR .05432 (IS).  I posted about this experience on this support group. 

I took Misoprostol another round in May, 2019 with Sprycel (although I had to take a break from Sprycel due to bone marrow suppression. 

 

Today I got my next PCR and I am now .0134 (IS).  

I am out of Misoprostol, and the pharmacy I was using now wants a prescription. 

I am looking for a doctor who is willing to prescribe Misoprostol.  Would you be willing to tell me who you see???   

Either way on that, This is SO EXCITING! 

I nearly fell over when I read your post.  If you look on this forum, you will find mine from April. So PLEASED to meet you, who ever you are! 

 

BTW, I wrote to Howard Xue with my results and he was so appreciative to hear!!  The same for Prabhu and Paulson (at Penn State, who also researched Misoprostol).  They would love to hear from you too!  πŸ’•β˜ΊοΈ

Thanks Scuba and good luck on TFR!  I will ask my doctor about the documenting it, he seems pretty conservative (except for the prescription), won't let me stop or lower my dosage so will likely go back to my expert that I started with at some point who was on board with either of those.  I'm not sure if he would be interested in writing one but can at least ask.  I once told one of my oncologists that there may be a link between high triglycerides and CML.  Before I was diagnosed, for two years my triglycerides had been rising, after diagnosis and lower CML numbers, they returned to normal.  He was not interested in writing about it though, might ask some other experts.  

Hi Sarah, just read your post, great news on your reduction and so fast!  With so many combinations of things you were trying, who knows which worked, maybe all three did.  I will look into the fish oil and Sodium Selenite too.  So happy to know I'm not the only one that has tried this, I'm guessing that quite a few have globally after the research was released.  I'm also happy that the researchers are not angry, I was not sure if they would be since we are kind of piggybacking on their research and they are not benefiting (financially) from it.  I'm sure Big Pharma won't be pleased if this does get out and it does in fact work.  Until we get more data (two sets so far look great!) then we won't know for certain. 

Did you have any adverse affects from taking the Misoprostol?  What was your dose and how many times per day?

I hesitate to give out my doctors name without his permission, I was actually concerned about even asking him for the prescription, wasn't sure if I might get him into some trouble or not but he did not seem too concerned.  Interestingly, Misoprostol is also sold at pet stores for dogs (still need the prescription) but that may be another route (black market, dark net, being the other). 

I'll write to the researchers also and let them know my results.  So glad that they are not angry!  

The researchers will be delighted to hear from you.  No sweat about the doc’s name - at all! - I completely understand. My source for Misoprostol now wants a prescription but I found another source for now. I also am not sure how much was due to the fish oil with Selenium vs Misoprostol, but WOW when I saw your numbers on Misoprostol, I’m re-envigorated on that.  In fact, I have copied your chart and results, planning to approach my doc for another plea!!  He might just listen now, with your results. 

I took mine in smaller doses spaced out through the day. But I plan now to do my next round in large doses once per day as I’m aware that is how they did it with murine animals... and your results have blown my mind. !!  

I consider you a kindred spirit of the deepest magnitude. πŸ’•

Here is my dose chart: 

2/25/19   8 grams EPA only Fish Oil per day plus 2 Tbs Sodium Selenite, divided into two dosages per day. I continued this through 3/10/19. (Edit: I took 2 Tbs Sodium Selenite twice per day, 4 in total). 

3/11/19   800 mcg Misoprostol (divided into four dosages throughout the day). Then increased Misoprostol as follows: 

3/12/19 1200

3/13/19 1400

3/14/19 1800

3/15/19 2000 daily through 3/17/19. This was intense dose so I dropped back to: 

3/18/19 1600 daily, and continued this dose through 3/25/19. Then stopped Misoprostol and went back to: 

3/26/19 The above Fish Oil and Selenium every day through to 4/10/19 when my PCR test was done 

4/10/19 PCR .0532

I have to work full time to keep my health insurance so I divided Misoprostol up throughout the day. I still had diarrhea but I luckily made it to the bathroom!  LOL.  I had nausea the first time I upped my dose to the 2000 level but I plowed through and didnt have it again. 

Howard Xue said he thought it was the combination. Prabhu asked what form of Sodium Selenite I was taking. Penn State is studying the Selenium now, after their latest research. 

 

This is fascinating!  I may ask my doctor about trying this.

How did you decide what dose of misoprostol to take?  Did it have any correlation to the dosage given during the murine model experiments?

I'm wondering about the timing of the doses also.  I think I read somewhere that dasatinib is very dependent on stomach acid for proper absorption.  Since misoprostol inhibits the secretion of gastric acid and has a 20 to 40 minute half-life, it seems like it might be a good idea to take it at a different time of day than the TKI.

Does the misoprostol require a TKI to do its work against CML stem cells or is it a totally separate pharmacodynamic process?

 

Kirk

Hi Kirk, 

Yes this is fascinating!! I can share my two cents and look forward to what ro6ue1 will add. 

Per the murine models Misoprostol works with or without TKI, and in fact superior to TKI alone, but best results were the two together. 

Misoprostol is ProstaglandinE1 (PGE1) derived from EPA Fish Oil. PGE1 is endogenously manufactured in healthy bone marrow, but that process is hampered in patients with CML. There are pathways they are still detailing to nail down precisely what goes wrong. In the meantime when they injected CML mice directly with PGE1, the leukemia stem cells were killed, (bypassing the need for their bone marrow to make PGE1).

PROBLEM is, Misoprostol’s “injectable” analogue “Alprostadil” (aka Caverject) should NOT be injected in human males who have leukemia!!!!  This is because men with leukemia are prone to priapism (prolonged, painful, irreducible erection) while Alprostadil is used to treat erectile dysfuction by injection (directly it into the penis shaft for a two hour erection). So accordingly the Alprostadil insert advises against use if you have leukemia. (They are assuming injection into the penis, however). This gets complicated to unpack. :/ 

Misoprostol, on the other hand, causes abortion in pregnant females and is used to initiate labor in a full term pregnancy if labor is stalling. So women should take care with Misoprostol, never use if pregnant, could become pregnant or breastfeeding. 

You can see why Human trials could be complicated to get through the FDA approval process. (Not to mention the obvious major profit loss factor).

BUT WAIT, Misoprostol is taken safely by both men and women by mouth to treat stomach ulcers!  It’s taken all the time!  It coats the stomach, providing a lining in between stomach contents and stomach acid. So (as you mentioned) I take Misoprostol at least 2 hours before or after Dasatinib since Dasatinib works best in stomach acid. 

The thing I want to do differently though is take the full dose all at once instead of smaller portions through the day. The mice were dosed once per day, full dose. Here is a quote in the patent, on dosage (FYI):

”In the experiments described herein, the amount of .DELTA..sup.12-PGJ.sub.3 used to eradicate LSCs was calculated to be 0.6 micrograms/day/gram mouse for 7 days. Generally, the dose is in mg/Kg subject/day=ug/g subject/day. In a typical embodiment, a dose in the range of about 0.025 to about 0.05 mg/Kg/day is administered. Such a dose is typically administered once a day for a few weeks.”

(You can find conversion tables online if you want to work out the mouse:human ratio using these variables).

BUT REMEMBER, this (above quote) dosage is for injection. So I just took the usual maximum dose for a human female pursuing abortion (1600 mcg) and I increased that to what I could manage during a work day by dividing it into small doses. But I think it needs a major impact all at once every 24 hours over many days. I seem to recall in one experiment mice were injected for 18 days.

That all being said, it was later discovered (Penn State) that Sodium Selenite restores the endogenous production of PGE1 inside the bone marrow by “jump starting” the tumor suppressors back into normal functioning. If that works you of course do not need to ingest the PGE1 because your body produces it again, on its own. 

I will try and post a study on the Sodium Selenite here. Oh but before I forget, (you will see in the study) NSAIDS interfere with the Selenium. So I only take CBD oil or Curcumin for pain and inflammation. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102641/

How much sodium selenite do you take per day? (dose)

I notice this article is from 2014.  What have they been doing about this since, research-wise?

Hi Scuba,

I posted my dose chart earlier in this thread, in a reply to ro6ue1. Let me know if you can’t find it and I will reconstruct.

I took a quite high dose, but also with the Fish Oil, for two weeks then stopped, switched to Misoprostol for two weeks then switched back. After all, Misoprostol *is fish oil* dehydrated, concentrated and compounded into tablets.

Here below I will try and post a link to their research on Fish Oil, in case of interest. 

(Edit: The link was corrupted when I tried to post. But here is the title if you want to Google the study): 

Chemopreventive Effects of Dietary Eicosapentaenoic Acid Supplementation in Experimental Myeloid Leukemia

Hi Kat73,

You can find info on latest research at Penn State web site. I wrote to Dr Prabhu who told me (in February) they are in the process of revising their application to FDA for clinical trials on Selenium. I am not going to hold my breath on that. The Fish Oil (Misoprostol) has been know since 2011. Someone brought it up on this forum in 2012. If you search “Prabhu” on this very site you will find the historic thread with Prabhu’s email address which is how I first contacted him. His research with Fish Oil led him to the selenium. I assume the human trials are stalled because the powers that be do not want a cure found. Think of the profit loss!!!  Pessimistic, I know... But maybe that’s just me. 

Important to note: The fish oil used was EPA-only Omega 3. At high dosages take care to ensure it is not tainted with mercury.

Eat Brazil nuts?

https://www.berkeleywellness.com/healthy-eating/food/article/brazil-nuts...

Been eating a few of these most days over the last few years. Wonder if this is why I went 'undetected' during this time? Could be I guess. Sure beats taking Misoprostol and heading to the bathroom ... and missing by 10 seconds.

You might be right!!  πŸ‘πŸ»

I did additional research on selenium and brazil nuts and found this:

https://www.ncbi.nlm.nih.gov/pubmed/8072875

I knew brazil nuts are good for you in low quantities (too much can lead to toxic results) and began eating a few nuts (two - four) per day a few years ago. I have no idea whether this is helping, but based on what you all reported .... can't hurt and might just be 'protective' of TFR.

I am gaining confidence that when I stop sprycel (next year), I believe that selenium might just help keep CML in check.

Could it really be this simple?

Oh, this (on Brazil nuts) is a really good find! Thanks for sharing!!  In fact after I ordered my sodium selenite (while waiting delivery), I went to my local food coop and got Brazil nuts!  So who knows, maybe that works just as well. 

The reason I went with Sodium Selenite ultimately was the reference made in one of their papers. I found the quote here for you: 

“Interestingly, treatment of these splenocytes containing LSCs with various forms of organoselenium compounds, such as MSA, Se-Met, and p-XSC, showed differences in the ability of these selenocompounds to target LSCs (Fig. 2B). Although not as effective as inorganic selenite, MSA was relatively more effective than Se-Met and p-XSC to cause apoptosis of LSCs. Taken together, these findings demonstrate that the ability of selenium to target LSCs for apoptosis is dependent on the form and dose of selenium.”

I don’t know which form of Selenium is in the Brazil nut. Sodium Selenite was the inorganic type they used here and is allegedly more bio-available. I’ll try to attach a link to the paper.  Look at Figure 2 (B) comparing Sodium Selenite performance to the other types. Also there are photos comparing spleen sizes with and without the selenite. Figure 4(F) compares performance of Prostaglandin (top bar) to various Selenite dosages and also with or without different NSAIDS (which inhibit). Figure 4(G) shows impact on Blast Crisis. 

Either way it looks like selenium is a good idea, just seems the selenite is superior. 

http://cancerres.aacrjournals.org/content/74/14/3890.full-text.pdf

 

It's all very interesting ...

Of note, however,

Research is from 2014 and five years later we don't hear much about it.

The effect is observed in mice. As one of the researchers at M.D. Anderson told me. We have cured cancer !! ...... in mice.

Applying mouse models to humans is a roll of the dice sometimes.

Nevertheless, biology is biology and there is likely anecdotal evidence people who eat brazil nuts tend not to get leukemia because of the mechanisms outlined in this paper.

It would be interesting to learn if there is a correlation between people who eat brazil nuts and incidence of leukemia.

(additional info on Selenium ... like vitamin D, more is not better. Need to get the proper amount: https://ods.od.nih.gov/factsheets/Selenium-Consumer/)

 

Scuba,

I hear ya, and yet mice were well good enough for testing the TKIs and we embrace the result. So maybe less a roll of the dice on this one (?). 

Anyway, the research on selenium (and fish oil and Misoprostol) predates 2014 by decades and continues today at robust levels. That (one) paper I linked happens to offer the most detailed info comparing “types if selenium” (your question) which is why I linked it (and impressive spleen photos) but is not by far the last. Don’t forget, also, dosage of selenium is key for CML. Problem is, any (and every) potential cure poses immediate intolerable threat of profit loss in the *hundreds of billions per year* and the FDA (approving agency for all human studies) is in the right pockets to prevent such travesty. 

As far as “adequate selenium” goes, that seems to tip the scales on kick-starting  pioglitazone (Metformin) which mysteriously sometimes cures and sometimes doesn’t. That’s another whole area; If you are interested in those papers, I can provide links. But this whole pursuit is exhausting to undertake given the mountain of skepticism that wins out in the end. 😞 (sigh!). 

Which is why it’s so exhilarating to find kindred spirts on this path. And for that reason, I’m grateful just to be permitted to share. Thank you.

Sarah,

If you have any problems with sharing links on this page then please send the URL/s to cmlsupportgroup@gmail.com and we will try to help.

To all: Regarding sharing email addresses of doctors and/or members of this forum - please get permission from the individuals concerned and send that to our email address so we can privately share with those who would like the contact info. This is because our website, and therefore this forum, is accessible to anyone globally.

Thanks to all of you for sharing these very interesting combinations. BTW, I take selenium daily at a dose of 200mcg, there is some research that indicates this protects against breast cancer.

I will share all this info with the researchers who are currently finalising the TASTER trial (research and protocol developed by Prof. Tessa Holyoake and her team at Glasgow).  Prof. Holyoake died unexpectedly last year, but her research into LSCs in CML carries on. TASTER is now led by Prof, Mhairi Copland and although the trial has been delayed, it will hopefully open in the UK in August this year. The protocol will combine TKIs with other drugs with the aim of effecting better responses and deeper MRs in the minority of patients who are unable to achieve ELNet treatment goals with TKI therapy alone and have progressed or are in danger of progression, to later stages of CML.

Sandy 

How did you decide what dose of misoprostol to take?  Did it have any correlation to the dosage given during the murine model experiments?  

For myself, I decided to try the standard dose at first, just all at once instead of spreading it out throughout the day.  In some of the research papers I read on the combination, they were giving it to mice at the same time as the Imatinib.  I went to the higher dose later on since it was a known safe dose for pregnant women (looking to abort).  

I'm wondering about the timing of the doses also.  

I thought about the timing also, thinking that my stomach wouldn't have the acid to digest the Imatinib; never had an issue.  If you can I recommend taking the Misoprostol one hour after taking your TKI, that way your stomach has had time to digest it and the one hour difference shouldn't make any difference in how effective the combination is.  
 

Does the misoprostol require a TKI to do its work against CML stem cells or is it a totally separate pharmacodynamic process?  

This one I'm not sure of, maybe?  I wouldn't recommend only taking the Misoprostol since it may only affect the stem cells and not their progeny and the best test results were when used in combination.  

Regarding Brazil nuts and selenium keep in mind that it may contain different amount of selenium depending on place of origin.

Selenium chart

https://honey-guide.com/2012/11/19/brazil-nuts-and-selenium/

 

Hello Scuba,

Did you take any multivitamins during the treatment of Misoprostol and the TKI ?

I am currently on Bosulif 300mg daily.  I was also taking multivitamin (twice/day) to help with QT/electrolites problems that maybe caused by Bosulif.

I started the Misoprostol 4 days ago (200 mcg x 4x/day) but I was afraid to continue the multivitamin, as I don't want anything to interact with Misoprostol. But it has been 4 days since I resumed on the Bosulif and I am starting to feel again the flapping in my chest. I am wondering if you used any multivitamins or supplements during your treatment?

Also, since you have reach ND, what do you do next ? Do you keep taking the Misoprostol ?

Thank you,

Hi Mayita,

I do not take Misoprostol - you probably meant this for another of our forum writers.

Regarding multivitamins - I do not take a multi-vitamin. They are useless. They do not have the correct combination of vitamins that belong together let alone in sufficient dose. I take specific vitamins for deficiency food is unable to satisfy. This includes vitamin D and K2 (two of the most important ones). Minerals such as magnesium are another hard to get from food alone nutrient. I am taking 200mcg selenium based on what was disclosed in this thread! Very interested if selenium can be the breakthrough in killing cancer stem cells.

I remain "undetected" while taking 20 mg dasatinib (sprycel). Soon to test treatment free.

Did you take any multivitamins while on Misoprostol ?

At what point did you increased the dosage from 800mcg to 1600mcg daily ?

Thank you

No multivitamins but I do take vitamin D3 (2,000 iu) most days.  

 

I also take a few other supplements:  

 

Hawthorne Berry (good for heart)

Dandelion Root (both picked and in store bought form, good for fighting cancer and digestive support)

 

As for when I switched, it was sometime during the first attempt, maybe after a month.  Been taking either 800 or 1,600 ever since (mostly the 1,600).  

 

Going to be seeing my old oncologist in September, he was open to stopping the medication once I hit ND after two years.  I think he will be open to me stopping to see if I am actually cured once I inform him of the Misoprostol success and Science behind it.  

 

Ok. I just got my August 13 PCR result: .0083

June 14 was .0134

I was on 20mg Sprycel and for 14 consecutive days between these tests I took 1600 mg Misoprostol all in one dose at 6:30am. I took my 20 mg Sprycel at 8pm every night.  

It’s another huge drop. Almost Undetectable now. The lab test is only sensitized to .0069

Yay!!  

 

Seems to really be working, almost a full log drop.  Wish more people could contribute to the experiment to see if this is actually curative.  

 

I scheduled an appointment for next month with my original Oncologist so will see if he is up for allowing me to stop my medication and see if this really does work.  

ro6ue1,

I am also beginning to flirt with taking flight into this without a TKI to see what happens. 

I just analyzed all my notes. It’s been for me an average of a 1-log reduction per month on Sprycel progressing with dose reduction.  Here is my outline: 

Started 32% PCR

Month #1  100 mg  (Then a 6 week break);

Month #2    80 mg  (Then a 4 week break);

Month #3    50 mg x 2 weeks then split to 25.

Month #4    20 mg

Ending PCR is .0083 achieved between Jan and mid- August 2019. 

Has anyone ever had a 1-log average reduction per month on any TKI alone?  That is my question now. 

 

Sarah:

On day 53 of treatment (later 2016) with 600 mg Tasigna, my PCR was 5.8% IS and 30 days later it was .10%, so that was a log reduction of nearly 1.75.

I have had the general experience of achieving a better PCR on a reduced dose of Sprycel after breaks for pleural effusions.  I have always chalked it up to a phenomenon, but I can see that research is beginning to get around to looking at this.  I'm at MR4+ on 20 mg and am so tempted to "test" the "theory" by stopping and restarting or taking one every other day, just to see if I could nudge things into undetected.  Unsupportive oncologist, however!  My personal experience has been that the CML comes back really fast during a break.  Sarah, did that happen to you?

No, my PCR did not increase during breaks from Sprycel (one was 6 week break, another was 4 weeks).  It rather kept going down.  However, I was taking the adjunctive substances we are discussing on this thread throughout my breaks. 

I do believe lower is better with Sprycel. At least it is for me. 

Wow that is a huge reduction all at once.  Do you mind sharing some about your history since then?  

3 months after the .10% = .006%; 

Starting in June of 2017 = have bounced between <.003% and undetected with most recent in June 2019 being undetected.

I have been on 150 mg/day Tasigna (1/4 of starting dose) since September 2017 due to a number of unusual side effects.

I am one of the lucky ones who had rapid and deep response and have been able to maintain that on low dose so far.

 

So, let's serve up the pasta tossed with fish oil and topped with mucho white dairy, ground Brazil nuts and flavored heavily with turmeric - party time!!  I'll eat it every day if it works.  Die, you stem cells.  Come on, University of Pennsylvania!

(Lest anyone misconstrue, I'm being lighthearted here.  And serious! wink)

So got my latest results.  

 

0.015 (Major NCN) 0.006 (International Scale)

 

Why the increase?  

 

I took my medicine 2 to 3 times a week as a test.  I wanted to know if the CML was gone, apparently it was not.  Doc wasn't concerned, he did state that I should take my medicine 80% of the time to prevent a mutation.  

 

So back on daily dose, going to continue to take the Misoprostol when possible.  I'll be sticking to daily medicine with Misoprostol to get back to non-detectable and stay there for two years then try TFR.  

 

I believe that the dosage of Misoprostol is not enough to eradicate all CML stem cells (I do not recommend going any higher).  Also, the life of the drug in the body is far too short of a period of time (something like 30 minutes) to traverse the entire body and hit every LSC.  In my opinion, this makes it very difficult, it not impossible, for the drug to completely eradicate all LSC's.  This doesn't mean that there is no benefit and that it is not possible, in the small sample size we have it has been shown to reduce the leukemic burden quite rapidly, each time I was plateaued (first MMR, then CMR) and took the drug I was able to reach the next level.  Doctor also seemed to be on board with the use of Misoprostol for the apparent benefit.  

 

Don't give up hope for a cure, I know of two trials either started or starting soon to cure CML.

Hi ro6ue1,

Where you taking both the Tasigna and Misoprostol 2 to 3 times/week ? What dosage were you doing on Misoprostol? What dosage will you be doing now?

I will have my PCR test in 2 weeks.

Thank you,

Your experiments with misoprostol are of interest. Going back to full-time dosing of a TKI was prudent.  But I would posit that your ND was a one-off and that you have just gone back to where you solidly were, which is - make no mistake! - virtually the same as undetectable.  This happened to me and I thought all my troubles were over; I had reached the Land of Undetectable at last.  Nah.  Next two years' worth were all the same:  two zeros to the right.  One brief shining moment!  But what that taught me was that Undetectable should be no one's Holy Grail.  I would posit that no matter what you had done - taken your pills every day, 3 X week, 2 X weeks, cut them in half, whatever - you would be right where you are.