17 replies to this topic

[thatguy]

I'm almost 30 years old, and going on 14 months since diag and starting gleevec 400mg. I've been on Tasigna for a total of 4 months, 2 of which at 800mg. Had .663% at 12 mo, and negative bmb suggesting ccyr. Now at 13 months, .789%. I've had no severe side effects with Tasigna yet, and my doc is insisting on Bosulif now. I have no other co-morbidity or condition....I've been sent for sct evaluation (considering my age and response to Gleevec I've been told) and 3 10/10 registry matches were found. I'm torn because of burning through meds, and risking loss of these unrelated sct candidates, as well as possible development of health conditions from tki use over time and increasing age reducing good prognosis stats.

Isn't ccyr at 12 mo, great? I have a baby boy coming and a 2 year old girl, I really want to raise and protect.


Honestly, is this treatment plan proper?

Thanks

[gerry]

CCyR at 12 months is very good. It is the major milestone, why is your doc wanting to change things? I figure the other question might be is how much experience does he have with CML?

[thatguy]

That's what I'm saying... everything I've read from medical studies and journals is contrary to what these doctors are seemingly seeking. ..the realistic side of me says "they're the doctors" but the skeptical and terrified one is asking who to trust my life with.

[gerry]

Not sure how easy it is for you to get a second opinion. I switched docs at around the 5 month mark, my original doc was competent, but I wasn't entirely sure about him. My current doc was actually trained by my first doc. I feel more comfortable with current doc and have been able to participate in the decisions about my treatment.
You need to find a doc that you are comfortable with, you are going to be together for a long time. Second guessing your doc isn't good for your head space. ;-)

[r06ue1]

I would NOT even bother with SCT unless you are in one of the more aggressive stages.  Your numbers are still the same (both within the margin of error for the testing) and a drug change is completely up to you but unnecessary.  If you want to switch drugs, I would look at Sprycel or Tasigna first before Bosulif, you will probably get better results but it sounds like you just hit the plateau and your numbers will go down again eventually.

[thatguy]

Not sure how easy it is for you to get a second opinion. I switched docs at around the 5 month mark, my original doc was competent, but I wasn't entirely sure about him. My current doc was actually trained by my first doc. I feel more comfortable with current doc and have been able to participate in the decisions about my treatment.
You need to find a doc that you are comfortable with, you are going to be together for a long time. Second guessing your doc isn't good for your head space. ;-)

Thank you.

[thatguy]

I would NOT even bother with SCT unless you are in one of the more aggressive stages. Your numbers are still the same (both within the margin of error for the testing) and a drug change is completely up to you but unnecessary. If you want to switch drugs, I would look at Sprycel or Tasigna first before Bosulif, you will probably get better results but it sounds like you just hit the plateau and your numbers will go down again eventually.

Yeah I've been on Tasigna for 4 months, high dose, 2 of those... I mean, it's very possible that I, in fact should be responding faster on the high dose...I'm nervous, I don't like the direction that I'm heading

[scuba]

SCT ??#)($%*&_)#*(@   are you kidding me! That's malpractice to be suggesting that at your stage. 

 

You ARE CCyR .... which means no CML cells that they can see (especially in the bone marrow). Your PCR is below 1.0%. And you did all of this in 12 months when many ... many patients take up to two years to get there.

 

You are one of those patients whos e FEW CML cells are transcribing a lot more RNA (hence the current PCR numbers). This will die down over time - but you need time. You can switch drugs if you want - Sprycel would be a good choice in order to attack the higher order cells (which are likely pumping out the bcr-abl protein), but as long as you are below 1.0% you are fine to keep going. 

 

SCT ??? are they mad.

 

One other thing ... what makes CML truly dangerous is the presence of blast cells. Blast cells are what kill when they proliferate. If you have few to zero blast cells (bone marrow or peripheral blood) then you are even in better shape. It's normal to have a few blast cells, but even better to have none (blast cell production is normal, just that they differentiate quickly so typically don't show up).

 

What did your bone marrow test show? Trilineage hematopoiesis? 

 

SCT #*$)#*_)@(*#)@(*#%_)*   - not even close.

[garfonzo]

Those numbers look ok to me, thatguy. Error margins and plateaus are normal. Many of us take longer. Look at my results in my signature. I did eventually switch from Tasigna to Sprycel after 2 years and that did the trick, reaching MMR a year later. Like scuba said you having a good response so far to the drugs. I too was very disappointed when my % didn't drop like a rock but my quality of life is no different now than if it had dropped quickly.

[Trey]

Just looks like another case of Tasigna response plateau at the 12 - 18 month point.  We see that a lot.  PCR stays flat for a while then drops after that with no changes.  No change necessary except maybe the Onc. 

[thatguy]

SCT ??#)($%*&_)#*(@ are you kidding me! That's malpractice to be suggesting that at your stage.

You ARE CCyR .... which means no CML cells that they can see (especially in the bone marrow). Your PCR is below 1.0%. And you did all of this in 12 months when many ... many patients take up to two years to get there.

You are one of those patients whos e FEW CML cells are transcribing a lot more RNA (hence the current PCR numbers). This will die down over time - but you need time. You can switch drugs if you want - Sprycel would be a good choice in order to attack the higher order cells (which are likely pumping out the bcr-abl protein), but as long as you are below 1.0% you are fine to keep going.

SCT ??? are they mad.

One other thing ... what makes CML truly dangerous is the presence of blast cells. Blast cells are what kill when they proliferate. If you have few to zero blast cells (bone marrow or peripheral blood) then you are even in better shape. It's normal to have a few blast cells, but even better to have none (blast cell production is normal, just that they differentiate quickly so typically don't show up).

What did your bone marrow test show? Trilineage hematopoiesis?

SCT #*$)#*_)@(*#)@(*#%_)* - not even close.

Yes, that is what I have Trilineage hematopoiesis- no idea what that means though.

If I recall correctly, at diagnosis my bmb showed 2% blasts in both marrow and p. blood. Following that, in my routine labs, no blasts have been counted in p.blood. Most recent bmb was either 1% or "less than 1%" I forget.

Thank you!

[thatguy]

Those numbers look ok to me, thatguy. Error margins and plateaus are normal. Many of us take longer. Look at my results in my signature. I did eventually switch from Tasigna to Sprycel after 2 years and that did the trick, reaching MMR a year later. Like scuba said you having a good response so far to the drugs. I too was very disappointed when my % didn't drop like a rock but my quality of life is no different now than if it had dropped quickly.

Thank you sir, I hope my path follows suit. I really would rather try (if I'm resistant to high-dose Tasigna) Sprycel, rather than go third line.

[thatguy]

Just looks like another case of Tasigna response plateau at the 12 - 18 month point. We see that a lot. PCR stays flat for a while then drops after that with no changes. No change necessary except maybe the Onc.

This could still be considered a plateau even though the drug is relatively recent, and dose has been increased? I thought they occurred after longer term use?

As to my doc -
I know several have suggested that, including yourself previously Trey. My insurance is contracted with 4 hema-cologists in Vegas, and this is who diagnosed me, and is actually the top or one of the top rated in the city.

[r06ue1]

If they are talking about a SCT (not great odds of survival) and they are the best Vegas has to offer, i would be moving out of that city very soon or looking to take a trip every three months to see a real Oncologist.

[thatguy]

If they are talking about a SCT (not great odds of survival) and they are the best Vegas has to offer, i would be moving out of that city very soon or looking to take a trip every three months to see a real Oncologist.

 

I hear you...

[thatguy]

Yes, that is what I have Trilineage hematopoiesis- no idea what that means though.

If I recall correctly, at diagnosis my bmb showed 2% blasts in both marrow and p. blood. Following that, in my routine labs, no blasts have been counted in p.blood. Most recent bmb was either 1% or "less than 1%" I forget.

Thank you!

 

 

Just looked back, my most recent Marrow showed 1% blasts.

[scuba]

No blasts in peripheral blood is normal as is less than 5% blasts (often it can be zero blasts) in the bone marrow.

 

This is important and just re-confirms that your CML is very much under control and your prognosis is excellent. More to the point - you will die of something else, not CML. As time goes by you will realize that point.

 

Regarding blasts .... blast cells are immature blood cells of the myeloid blood line and differentiate into the different blood cell myeloid types. Trilineage hematopoiesis means your bone marrow is manufacturing red blood cells, white blood cells and platelets in a normal fashion (the three blood lines).

 

Your "normal" bone marrow cell machinery if functioning as expected. When technicians look under the microscope at your bone marrow sample they see all of the normal cell precursors in proper balance making blood (trilineage hematopoiesis).  Normal blast cells don't last long. They form and differentiate quickly - but only if they can ... In CML and other leukemias, blast cells tend to not differentiate and begin accumulating which is why they show up under the microscope. It is the blast cell accumulation that kills in leukemia (CML in particular). CML blast cells (blast cells that have the bcr-abl gene) have difficulty differentiating (not zero otherwise CML would be even more deadly than it was prior to TKI's). Getting CML blast cells to differentiate was part of the problem in treating CML. As long as blast cells were under control, CML was considered chronic. As blast cells accumulate - the chronic phase of CML transforms into accelerated and then into blast crisis phase. 

 

https://www.verywell...t-cells-2252175

 

Blast cells are normal precursors to our blood and are necessary - they just don't last long so are not seen in large numbers or at all. 

 

Blast cells (normal AND leukemic) have vitamin D receptors in abundance. They need vitamin D in order to differentiate. Vitamin D acts like a hormone which signals blast cells to continue their cell differentiating process to make other cells. Having high normal amounts of vitamin D can help prevent blast cell accumulation. Often low vitamin D status (i.e. < 20ng/ml) confers higher blast cells in bone marrow.

 

In my own case, I have always had blast cells present in my bone marrow (and around diagnosis in my peripheral blood). At diagnosis my blast cell percentage was near 10% (very bad). During initial treatment, blast cells disappeared from my peripheral blood and fell to 3-4% in bone marrow where it remained ... UNTIL .... I started to increase my vitamin D levels. Once my vitamin D level rose (it was 17 ng/ml when first tested), blast cells in my bone marrow disappeared. My last series of bone marrow tests showed zero percent blast cell count ever since I increased my vitamin D level (I keep it over 60 and less than 80 ng/ml).

 

I strongly believe in the importance of high adequate levels of vitamin D for healthy bone marrow function - and a check on CML blast cells. When I try my cessation attempts (i.e. stopping Sprycel), I have confidence I won't suddenly transform into blast crisis.

 

Vitamin D is no cure of course, just another tool in the toolbox to fight CML (and cancer in general) and maintain a healthy body.

[thatguy]

Thanks for that very thorough explanation Scuba. I just went and dug through my lab results and can't find anywhere that vitamin D was measured. I had observed your opinion a few weeks ago and bought some vitamin D supplement, and attempted to start a regimen, however it continually and predictably brought on migraines. The weirdest thing. I used to take a multi vitamin prior to Tasigna, but that too, I felt brought on headaches... maybe these increase absorption levels? Maybe that's what I need to be doing. ..lol

Thanks again though for taking that time from your day.