Just wanted update you on my progress. 0.015 now down to 0.0025,.Doctor is very pleased and so am I!Hopefully the downward trend will continue and I told Doc was taking Tumeric and Magnesium and it’s because of this Forum that I knew about the 50mg Sprycel being more effective than 100mg.My question is this.What do I need to get to and for how long before I can lower dose to 20mg? Thank you.
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0.0025 2nd month on 50 mg Sprycel
Tanya - Told you so! Told you that you would get down there with Sprycel, and I'm very happy to be gloating for you. If you are not having any side effects worth worrying about, stay at 50 mg for awhile. Otherwise, I think you could ask to reduce to 20 mg after 3 more PCRs with double zeros to the right.
Hi Tanya, that's a fantastic result you must be so pleased.So glad you stuck with it ,I have to say you sound happy with no negative comments .Wish I knew what my latest results are ,my Doc still hasn't sent me a letter and it's 6 weeks ago ,they don't seem to realise it's an anxious wait do they .Good Luck for downward future results ,best wishes ,Denise.
You could lower your dose to 20 mg now. Any PCR level below 0.01% is indistinguishable from "undetected". You are in a good place.
I was put on 20 mg when I was at 50% PCR. It just matters what level works for you. In the case of sprycel, lower dose which works is the correct dose. Some people do require more. It seems from your report that you are likely to do very well on 20 mg which will help you avoid side effects.
Great news!
Yes, I'm on 20 mg. I still have some minimal residual pleural fluid, so I'm trying to stay on the minimum of Sprycel. Have passed a year of 0.006% IS on 20 mg. But I still think you should stay at 50 mg - if you have no important side effects - for a little while longer, despite Scuba's enthusiasm. You'll get there!
I recommend 20 mg instead of 50 mg because data strongly suggests that higher dose dasatinib suppresses normal immune system (). In particular, dasatinib is documented to impact Tregs and NK cells negatively.
http://www.bloodjournal.org/content/111/8/4415?sso-checked=true
https://www.spandidos-publications.com/ol/14/2/1363?text=fulltext
https://onlinelibrary.wiley.com/doi/pdf/10.1002/ijc.25121
"The decreased immune
responses caused by Dasatinib may be associated with
observed increased infections and formation of skin cancer in
Dasatinib-treated patients.15"
I don't suggest lowering dose lightly. It can seem counter-intuitive, since we are often taught more is more effective. But that is simply not the case when it comes to dasatinib. If 20 mg leads to PCR trending downward - then 50 mg will not necessarily speed up remission and could, in fact, decrease impact due to immune suppression. We know that our immune systems are vital to cancer surveillance. This is why I suggest prudent dose experimenting with doctor's oversight to find the best and "lowest" drug dose that works for each patient.
More drug does not lead to better results. It can actually have the opposite effect. Just like increasing vitamin D beyond 80-90 ng/ml starts to have a negative result in health status. There is an ideal sweet spot for dasatinib (unique to each patient) where CML destruction COMBINED with immune system surveillance is maximized. Increasing dose seems to have no effect on increasing CML destruction once a minimum threshold level is applied, but does lower immune surveillance. Key is to find out what works best. For most average patients, 50 - 70 mg is emerging as the compromise drug trial dose. But that is average over many patients. If 20 works better - then 20 is the correct dose, not 50. As you and I have both benefited.
(personal side note: I have never been able to tan well once I started TKI's (Gleevec/sprycel) UNTIL I dropped my sprycel dose to 20 mg. Once I did that, I can now tan. Also - I do wonder it 10 mg would work also, but there is no data for 10 mg. If 10 mg were available - I would try it - and see if I keep my PCRU status. And if it worked - imagine that my Tregs are even less effective so when I do try cessation I am better conditioned for success. Just a thought).
Wow,thanks for all that Scuba.I am not game to lower dose yet,will do 50 for another month and if result as good or better,will suggest 20mg.Can you spilt 50mg tabs and do it that way?We had great difficulty getting 50 mg script through Medicare so don’t want rock the boat too much!Hope my hair starts improve soon and good to hear about the tanning thing!Will keep y’all informed as to how things play out...Tanya
My doctor and I chose to go from 100 to 70, to 50, and then to 20 in roughly 12-15 months. its worked nicely for me.
Perhaps we could have gone faster, or been more aggressive with the size of the cuts but I had a very busy year with the arrival of twins so didn’t want to do anything too drastic too soon so played things, seemingly, a little more safe. Last thing we needed with new babies was me losing MMR.
my latest cut to 20 has been gong for a few months now, and despite one blip all seems to be pretty good. I’m on a 6 weekly PCR routine to keep a close check on things though.
Thanks for that,David,did you physically cut the Sprycel yourself?Think will see what next bloods are as am on antibiotics now plus pain relief for this weird lump I have just found in my groin(hope it’s nothing),and will see if can lower dose then.Hope your enjoying your twins and that’s awesome you’re down to 20 mg!
Scuba...What CML specialist do you go to? I am wanting to ask my doctor about lowering my 50mg to 20mg. I have head and neck pain for almost 5 months now. I have been on 50mg for a year and 3 months now (since diagnosis) I also tried the sprycel and ventoclax trial for 7 weeks but my organs began to hurt and I was so sick I laid in bed for almost a month. I went off the trial and now have been undetectable since 9 months. I get it checked every three months.
I know him. I met with Dr. Kantarjian. But left when they he wouldn’t respond to my questions. How long have you had cml? Why were you reduced to 20mg? And how soon after diagnosis? How long have you been on 20mg? I did they trial at MD Anderson. I’m just worried that my CML will come back at a lower dose so soon into my treatment. I’m hoping for TFR in two more years
Scuba,
I would like to talk more with you about 10mg. My Mayo onc brought it up at my appointment with him last week. We were discussing switching to bosutinib in September. I would love to get rid of my pleural effusion so I can get rid of the indwelling catheter. The catheter is not as much of a problem as dealing with Edgepark, the medical supply company that supplies the vacuum bottles!
Because I react so positively to 20 mg. of Sprycel he wondered if 10 mg (20 every other day) would do the trick. My drainage amount is slowly reducing and my PCR, like kat's, remains detectible but unquantifiable. Of course, at that low dosage, onc's worry is about mutations. But I'm not sure if that really is a worry if my response remains low. But how low does it need to remain? His specialty is plasma cell cancers, so he is going to hook me up with the myeloid group when I go back in September to explore this further.
I know you must have an opinion. 😉
Sorry, Tanya, for hijacking your thread! Congratulations on your excellent response!
Pat
My doctor told me taking sprycel every day is preferred over every other day due to its fast metabolism. Taking 20 mg every other day is not the same as 10 mg per day. To achieve half the dose, one would have to take 1/2 the dose every day (around the same time of day). I thought about cutting 20 mg spyrcel tablets in half, but unfortunately, they tend to crumble and actual dose becomes unknown. I hope BMS will manufacture a 10 mg version.
I do have this thought. If you are truly in remission and don't really need Sprycel (but don't know that yet), taking 20 mg every other day may very well enable your residual pleural effusion to resolve while at the same time keeping CML from rising suddenly. There is a chance you will maintain your current PCR status (or even go "undetected"). In this way, you are easing into a TFR test. If taking 20 mg every other day doesn't change anything in terms of PCR, next stop is TFR! Taking 20 mg every other day is not the same as taking none at all. There is certainly some action against CML if CML is not in remission.
If you do find your PCR starting to rise, you can return to your current protocol. Data shows that anyone who loses remission following a cessation or dose reduction test regains response when returning to their prior dose. So the risk in trying is near zero. I have a strong suspicion you will succeed.
Yes, Tanya, you can cut the 50's in half with a pill cutter box from the pharmacist. Good luck with the mystery lump. I had an enlarged gland under my jawline and was scared to bits (thinking of lymphoma, natch), they did a biopsy and it was nothing.
Pat - I can tell that you're trying like crazy to not go to bosulif, which I totally understand. There's a blog I follow and its author just went to bosulif because of repeated pleural effusions, and she's having the WORST time. Early days, and she's optimistic and all that, but still. Confirmed my worst fears. Yet, there are several regular posters on this and the US site who love their bosulif. I am fascinated by your latest experiment with 20 mg every other day! Hope it works and you can get off the catheter.
kat73, is it that obvious?! 😂 I had such a horrible time with Sprycel the first 6 months that the thought of going through that again with yet another TKI ten years later is so depressing!
I know I'm not a candidate for TFR, my counts begin to increase very quickly anytime I have had to stop Sprycel. They also go back down just as quickly upon resumption. I've been sitting on the fence now for over 6 months, I must decide to jump one way or the other, soon! 😛
Pat
(apologies for thread hijacking ... )
Pat,
I am trying to find the research I read some time back regarding leukemic stem cell pool (LSC) and CML treatment free remission. What I recall is for those who fail TFR despite having excellent response ("undetected" during treatment), these patients likely have a high number of quiescent LSC's. The idea is LSC's have to be induces out of quiescence and divide so that a TKI can kill them, thereby reducing their number. Over time, they become so few that TFR can take hold.
Recent conversation on this forum highlighted selenium as a potential added support to attack LSC's.
http://grantome.com/grant/NIH/R01-CA162665-02
It might be worth considering adding selenium to your diet at a high normal dose, but below toxic levels to test if this helps you succeed.
"Selenium is a naturally occurring mineral required for good health. It is obtained from food, and the recommended dietary allowance is 55 μg/d for persons 14 years or older, with a tolerable upper intake limit of 400 μg/d.1,2 The amount of selenium available in a diverse diet with meat, grains, vegetables, and nuts is typically sufficient to negate the necessity for supplementation.3 Selenium toxicity can occur with acute or chronic ingestion of excess selenium. Symptoms of selenium toxicity include nausea; vomiting; nail discoloration, brittleness, and loss; hair loss; fatigue; irritability; and foul breath odor (often described as “garlic breath”).1,2,4–6" from (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3225252/)
What I am doing is taking a 200 ug/d supplement daily on days I do not eat any Brazil nuts. On days I do not supplement, I eat two to four Brazil nuts. In this way I am mixing inorganic with organic based selenium. Only the supplement is an exact dose where Brazil nuts are natural and dose likely varies. Staying below six nuts is probably wise.
In addition, I have been fasting from time to time (coaxes blood stem cells to divide upon re-feeding) along with eating shiitake mushrooms (AHCC attacks leukemia), vitamin D3 and Curcumin.
I look forward to my second TFR attempt hoping that the above has diminished my LSC pool to oblivion leading to a functional cure.
It's all about the stem cells.
I'm thankful to this forum regarding selenium. There is a lot of information out there I had no idea existed. Yet again, no clinical trials, because selenium is free and can't be patented. So no financial incentive for pharma companies to do a true test in a robust clinical trial setting.
Just be sure not to overdose on selenium - more is not better.