18 replies to this topic

[idahobeavers]

i have not been on here for awile,but i just need to talk .i am on 400mg sprycel and my counts are in the danger zone,wbc 2.5 nuets 0.08.i was put on a zpac but i still got the cold. i am scared. i get my blood done every week and gen path monthly and bmb every 3 months. i go to dr mauro dec 13th and my bmt dr also. she is pushing for a bmt to get rid of my mds. last bmb showed no philadelphia and i am in a deep recession in regards to my cml but the mds will not go away. i am scared of the bmt so many have not made it or had serious complications. when i do have it done it will be at OHSU in portland, as i have 2 good drs there. i just need a boost here people thanks for reading

[ritan/]

Is your dose 400mg or 100mg? 400 would be a really high dose. I think 100 is standard dosing.

[idahobeavers]

i am so out of it i meant 80 mg,i take 4, 20s. talk about a blonde moment lol

[Trey]

Did you also really mean ANC is .08 or is it .8 ? 

Your Sprycel dosage is too high for you.  You are PCRU with low blood counts, so should probably be on 20mg per day, not 80mg.  If you really, really meant ANC is .08 then you should be off TKI drugs completely for a while. 

[idahobeavers]

thats what i am thinking also. i think the dose is way too much for me. i contacted my onc at OHSU. hope he gets back to me

[Trey]

Just "if it were me"......I would self-reduce my dosage and not wait for an Onc who doesn't know what they are doing to try to figure it out.  But that's just what I would do.  Not suggesting......

[idahobeavers]

trey i actually have thought about that especially since i am on 20 mg tabs now. if u were to do this what dose would u go down to not saying anyone is suggesting.............

[Trey]

Probably 20mg for a week or so.

You did not answer if your ANC is really .08 -- is it truly that low?  That should prompt a drug break if it is accurate.

[idahobeavers]

wbc.1.8,rbc 2.78,hct 32.2,plt 45, ne 0.8, finally got my copy of my cbc here are the real numbers

[Trey]

So ANC was actually .8 which is not so bad.  Big difference.  Platelets are very low so still would reduce dosage if it were me.

I am still sceptical that you actually have MDS.  Your counts are probably just low due to the drugs, and reduced dosage should help remedy that.  If so, it is not MDS.

[idahobeavers]

wbc.1.8,rbc 2.78,hct 32.2,plt 45, ne 0.8, finally got my copy of my cbc here are the real numbers

ok dr,mauro at ohsu and dr.holtan both say i am in a very deep remission with my cml,but since my counts are stillr eally low it is showing my mds is real. we were all hoping that my mds would go away as i went into remission. but as long as i keep holding my own and dont reguire any transfusions we will just let it ride.eventually i will need a bmt to make the mds go away

[scuba]

Sarah -

Your dose is too high. At 80mg per day (four 20mg. tabs) you are taking four times too much for your sensitivity. As you are in deep remission, Sprycel is likely very effective for you and you probably only need a small dose to keep you there or even bring you to PCRU ("undetected").

Sprycel can severely suppress the normal myeloid cell line. Some people - the lucky few - react very strongly to low dose Sprycel and over-react to the normal higher dose. I suspect your Sprycel sensitivity is similar to my own. I was started on 70mg Srycel and it tanked my myeloid line especially my Neutrophils (went to 0.1 !!). Dr. Cortes (my oncologist) did not wait to drop my dose - and did not drop me gradually. He immediately put me on 20mg. Sprycel after only a few weeks. He knows a great deal about these drugs and he routinely adjusts dose patient by patient. One size does not fit all. I have been taking 20mg. daily for more than a year and I am in deep MMR and close to PCRU (0.006% IS scale PCR). My red blood is still 25% below normal. And I certainly do not have MDS. At least Dr. Cortes has no concern there.

As you are in deep CML remission, you have nothing to lose by cutting your dose back - I would even cut it back to 20mg. per day (taken at night in my case). Chances are your red blood system and white cells will recover while the CML stays low or even continues to decrease. Even on 20mg., my Neutrophils hover around 1.7. Still below normal, but sufficient to live.

Ask your doctors to cut your dose - have them contact Dr. Cortes if they need cover, but cut your dose. In three months you can check if your CML has changed for the better or worse and then you can adjust accordingly.

[Trey]

Sarah,

Let's review the status.  You have low blood counts.  So do most of us.  Big deal.  We just take drugs that cause low blood counts.  And some also have trisomy 8 or monosomy 7.  We do not all have MDS, and it is very unlikely that you do.  Simply reducing your dosage would likely show that your counts can recover on the lower dosage. 

Your Onc (or you) can resolve this issue with a decrease in dosage.  Look at Michael (Scuba) inputs about his low Sprycel dosage.  And I told you what I would do if it were me.  Otherwise it is your choice.  We must be our own health care advocate.  Get a grip on it.

The rest of my rant about "why are Oncs so..................................whatever" is pre-deleted before typing due to the PG audience.  If you have MDS then so do many of the rest of us, BUT WE DON'T. 

Your Onc Dr Holtan is a transplant specialist.  It is no wonder that she talks to you about a transplant.  Next time you make an appointment at OHSU tell them you want to see Dr Druker during your next visit.  Tell Dr Holtan that "No" is not an acceptable answer. 

[idahobeavers]

wowsie guys! man sorry to tip over your boat. i am sorry i posted this. i was trying to get some good imput,not to be told i am a fng idiot. wow and this is why i dont talk too much on here.  I AM SCARED i dont need to be yelled at,told i am stupid or anything else. you both need some chill pills. your nice to alot of people on here but how am i differnt. i do see dr.mauro and he is a expert on cml. i dont just see dr.holtan and i also have 2 other cancer drs. i will see about druker and i did lower my dose.

[Calalily]

Hi Sarah,

Sorry to see you're having a tough time with it all at the moment. I'm afraid I'm not going to be a whole load of help to you as regards the results and what to do as I'm only a newbie but I can sense from your posts especially the one above that you are really scared so didn't want to read and not reply. You don't come across as an idiot at all, in fact you're being very pro-active seeking some advice! I just see one doctor and she has experience treating people with cml. I'm sure I drive her insane with all my questions but I want to learn and know as much as I can to make joint decisions with her about my care. From what I can see from your posts above you are seeing three doctors- is there one in particular that you find you 'trust' or prefer? I just think that for me I would find it very confusing listening to three doctors as they might be giving different advice and confusing the situation. I'm not sure what mds is, maybe you can educate me on that one?! I know sometimes when I read texts or emails I can take them up different to how the person intended me to interpret them. I do believe that Scuba and Trey were trying to help you above and give you there advice from their experience and I think that trey was telling you about the low blood counts so you would see there's lots of people here with the low blood counts and they are doing ok and that a bone marrow doc is going to advocate that where maybe you don't need to worry or go there yet or if at all. I know my doctor wouldn't even entertain it until last resort scenario! I know that's one of the things that i have found hard over the last few weeks is understanding that my bloods are going to be different to the average Joe but that doesn't mean they are bad. I just would LIKE them to be in the normal range so they aren't highlighted on my blood tests results!!!! How are you getting on with the lower dose? I've heard about Dr Mauro and read some of his research and he seems to really know his stuff. How did you find him? Anyway sorry for rambling on here but just wanted to say hello and hope you're doing better.

Best Wishes,

Calalily

[mariebow]

Sarah just my 2 cents from what I see of the replies is that they are in now way putting you down, they are just presenting their take on your question.  You are ultimately your own decision maker, they are just offering theirr advice.  We are all in this ship and no one here in there right mind, would knowingly put anyone else down.  We are all just about going through so many things because we tend to even second guesss our treatment and doctors, even though we mostly believe that we have the most educated and knowledgable doctors, because we have leukemia, and it keeps up wondering,hoping,being sure that the right course of treatment is the the one we are receiving.  This group of people are basically a caring and loving body of people.  this is only my two cents.

[idahobeavers]

mds is mydeoplastic syndrome. i was dxd oct 09,with cml with the philadelphia chromosone. my mds showed up about 2 years ago. some think it is med related. i have been on gleevec,tasigna and now on sprycel. i finally went into a real deep remission according to dr mauro.but now he believes i truly do have mds as my counts are still way low.if i stay where i am i will not need a bmt very soon. i have a bmb  every 3 mos to keep an eye on the mds.i got with dr mauro when i went to ohsu in portland oregon that is also where i see dr holtan. she is a bmt expert. but she is not pushing for the bmt.i also have a oncoligist i see here in coos bay oregon,as it is a 6 hour drive from here to portland. here they do my cbc,gen path and i see them monthly or as needed.so yeah i see alot of drs.but it is how it is. i think i have a good team of drs.they all communicate with each other. dr.mauro takes care of my cml and dr holtan takes care of the mds and the ones here take up the slack. i have fought this for a long time. dr mauro thought my mds was med related but now i am in remission he says i truly do have mds.so we just watch it and there have been alot who have mds that have went on for alot of years before anything had to be done. i pray i am one. as i dont want a bmt unless it is totally needed.

[idahobeavers]

i am not second guessing as i have a great team. tyhey tex and scuba that is. dont like that i am going to a bmt expert they feel she is just pushing for the bmt. which she was at first but no more. as she has said no need for one now. so we just do the bmb every 3 mos and keep an eye on the mds. dr.mauro thought at first it would go away when i got into remission but he now says i really do have mds. i have been doing the bmb every 3 mos now for a year get fish and gen path and my cbc. and they all show the mds.

[idahobeavers]

latest cbc

wbc 2.0 ,rbc 2.82,hemoglobin,11.0,hemacrit 32.2,mcv 114.2,mchc 34.2, rdw 16.9,platelet 46