30 replies to this topic

[JPD]

DX October 13, started proper dosage of meds Jan 14

 

January 15: .53%

April 15:       .78%

July 15:      1.1%

 

 

So it seems I have certainly plateaued. God, I hope that's all it is.

 

Onc said he doesn't think I'm losing response, but "obviously we'd like to get a deeper result".  The control numbers (total number of ABL cells or something like that was quite low).  My BCR-ABL numbers were lower than ever. but because of the low control numbers the % actually went up.  Do I have that right?

 

Soooo, he's gonna up my Tasigna to 400mg x2/day.  Of course, I JUST got my scrip reordered and have to wait a month before getting the upped dosage. 

 

Should I get another FISH test?  Should I look into another Med? Should I try, by whatever means, to get the upper dosage now, or is it okay for me to wait a month?

 

God damn, Turtle bullshit....

[Lucas]

Hey, jpd, i'm sorry. If i were you i'll check all the possible interactions - food, meds - and take my medicine at the same time everyday. Try to have another pcr within one, one and a half month to follow the trend. Oh, i think there's no problem start taking the higher dose now. Good luck!!!

[JPD]

Hey, jpd, i'm sorry. If i were you i'll check all the possible interactions - food, meds - and take my medicine at the same time everyday. Try to have another pcr within one, one and a half month to follow the trend. Oh, i think there's no problem start taking the higher dose now. Good luck!!!

Don't think I can get the meds (easily) because of the insurance cost - they just filled the order.  Both my Oncs know all the meds Im taking (Wellbutrin & Prozac) and there is no interaction.  I don't take antacids, nor do I drink grapefruit juice.  I think Im doing everything Im supposed to be doing. 

[Frogiegirl]

Come on platue! !!!!!!! I'm sure same thing would of happened to me had I not upped my dose. .72 then .83 upped my dose then pcru....you got this.

[Trey]

JPD,

 

Here is a little tutorial about your Onc saying your total ABL was very low.  The reason this is significant is a PCR does not count leukemic cells, but rather breaks apart all WBCs in the sample and counts the bits of BCR-ABL and also counts a control gene.  For CML the control gene is usually ABL.  So the BCR-ABL is counted, and also the total ABL is counted.  Then the BCR-ABL is compared to total ABL in the sample to arrive at a ratio and then a percentage.  The total ABL comes from two sources, 1) ABL inside the BCR-ABL, and 2) free ABL in the sample.  Free ABL is non-leukemic, while BCR-ABL is leukemic.  To have a low PCR the free ABL must be very high in relation to the ABL found in BCR-ABL.  As an example, if the only ABL in the sample were in the BCR-ABL, the PCR ratio would be 1:1 which is 100%.  But if there is only 1 BCR-ABL for every 100 total ABL, that means about 99% of the ABL is non-leukemic, so the PCR is low.  Free ABL can be influenced by several issues, which accounts for part of the high error rate in PCR test results. 

 

What this means is that the PCR percentage may not be decreasing as rapidly as the overall leukemic cell count is decreasing.  That is because the free ABL is influenced by many factors.  Some suggest that the PCR should not use ABL as the control gene.  GUS would probably be better.  Here is an example of the PCRs of one of our members (TeddyB) with PCRs done using both ABL and GUS as control genes for the same samples (a very interesting approach):

http://community.lls...58-pcr-results/

 

Although it is not necessary, since he pointed out the low total ABL issue you could ask your Onc to do a PCR with a different control gene.  Or you could just wait and see what the next PCR shows.  These things even out over time.  But it also shows why PCRs are not as precise as we would like them to be. 

[Frogiegirl]

JPD I im'd you. Check it please

[JPD]

Trey, thanks for that info. I've never heard of their being another control gene. My Onc doesn't seem that worried. I asked him about another FISH test and he said he didn't think that was neccesary, only if I wanted piece of mind. Would you suggest that?

I've pretty much resigned myself to having it take the higher dosage and I'm confident it will work IF I can handle the meds.

[rcase13]

Hmmm more Tasigna...so you can expect more hair loss... More itchyness or is that just me?

I'll be crossing fingers and toes for you. Best of luck to you.

Good news is, if your like me there isn't much hair too lose so not a big f'ing deal!!

[CallMeLucky]

Nothing more upsetting than seeing the numbers going up. Obviously you want them going down but you are in a good place we just want better. Processing and absorption of these drugs varies for everyone so 400mg may be all it takes. I do great on 100mg of Sprycel but despite most people seem to do well on lower dose as soon as I lowered my dose my numbers started jumping . Go with the higher dose and see what happens. The rx is frustrating with waiting another month but hat is the good thing about cml in chronic phase, it does move slow and you have time to make adjustments.
I won't go all homeopathic on you but I will suggest if you are not taking vitamin D supplement that you should try. I'm taking about 6000 iu per day. I know my vitamin D runs low and it is my opinion both from what I have read and what I have seen in my experience that Vitamin D seems to play a good supporting roll in fighting this.

Good luck!

[JPD]

Thanks everyone! People without CML have no idea how weirdly lonely this disease is - that makes this place that much more of a blessing.

[scuba]

Nothing more upsetting than seeing the numbers going up. Obviously you want them going down but you are in a good place we just want better. Processing and absorption of these drugs varies for everyone so 400mg may be all it takes. I do great on 100mg of Sprycel but despite most people seem to do well on lower dose as soon as I lowered my dose my numbers started jumping . Go with the higher dose and see what happens. The rx is frustrating with waiting another month but hat is the good thing about cml in chronic phase, it does move slow and you have time to make adjustments.
I won't go all homeopathic on you but I will suggest if you are not taking vitamin D supplement that you should try. I'm taking about 6000 iu per day. I know my vitamin D runs low and it is my opinion both from what I have read and what I have seen in my experience that Vitamin D seems to play a good supporting roll in fighting this.

Good luck!

 

Gary - Ditto on the vitamin D (don't mention this to Trey). Just be sure to measure your D level periodically so you don't go above 80ng/ml. 60-80 is a good place to be.

 

And - you probably noticed your mood and "anxiety" improving as well. Low vitamin D is bad for mental health:

 

http://www.ncbi.nlm....les/PMC2908269/

 

So - vitamin D is important for a lot of reasons. I personally believe it is helping me maintain remission without Sprycel. I have been Sprycel free since February. Unbelievable how good I feel now - and sharp (Trey will disagree on that too!). 

 

I take about 5,000 IU's per day now that is summer and I am running at noon (no sunscreen). I have a tan that was impossible when I was taking Gleevec and then Sprycel - no sunburns. My current D level (tested a month ago) is at 66 ng/ml. If it goes below 60, I'll up my dose for a short time.

 

Disclaimer: 

No delusions on CML cure with vitamin D (or anything else). A TKI is the only proven way to manage CML especially in chronic phase. I choose not to take a TKI at this time in the belief I may be able to remain PCRU/MMR without one, but I monitor PCR monthly (soon bi-monthly). Should PCR take a jump up - I am back on Sprycel (low dose 20mg). It is my hope that my approach is working for me. It is also possible I am just lucky and CML is in check, quiescent or just lazy and nothing I am doing is why I am PCRU/MMR. 

[JPD]

Hi, JPD, Just curious, what time of day do you take your meds, do you take any supplements?

10 am and 10 pm pretty much.  I have started taking a multi and a Vit D supplement (Kroger brand gummies, should probably get better ones, lol).

 

I don't take my meds exactly 12 hours apart as my Onc said anywhere around 10-14 hours apart is okay.  Just trying to keep the Tasigna levels from getting too high (givin me the QT Death Blues)

[JPD]

I will ask for my Vit-D to be tested when I go back into doctor (which Ill be doing as soon as I start on the 200mg pills). 

 

I'm also gonna get my Testosterone checked (as my smooth as a newborn seal hairless body has made me sexy as hell, need to make sure I can take full advantage)  

[scuba]

I don't know if it's helping but from time to time I take a quercetin supplement, my 1 year results will be avail in late august, I am hoping to end my plateau as well

 

I'm doing the same thing - taking a quercetin supplement from time to time. But I am also eating a lot of food that has Quercetin in it.

 

http://www.quercetin...view/food-chart

 

Maybe there's something to the "apple a day - keeps the doctor away".

[acl]

DX October 13, started proper dosage of meds Jan 14

 

January 15: .53%

April 15:       .78%

July 15:      1.1%

 

 

So it seems I have certainly plateaued. God, I hope that's all it is.

 

Onc said he doesn't think I'm losing response, but "obviously we'd like to get a deeper result".  The control numbers (total number of ABL cells or something like that was quite low).  My BCR-ABL numbers were lower than ever. but because of the low control numbers the % actually went up.  Do I have that right?

 

Soooo, he's gonna up my Tasigna to 400mg x2/day.  Of course, I JUST got my scrip reordered and have to wait a month before getting the upped dosage. 

 

Should I get another FISH test?  Should I look into another Med? Should I try, by whatever means, to get the upper dosage now, or is it okay for me to wait a month?

 

God damn, Turtle bullshit....

JPD, I am sorry that you have reached a plateau. I myself have reached a plauteau also. Right now I am taking 400 mg. Imatinib daily. I was wondering if the 300 mg. that I was taking after I plauteaed was helping any?

[soundoff]

Thanks everyone! People without CML have no idea how weirdly lonely this disease is - that makes this place that much more of a blessing.

Agreed

[JPD]

I'm doing the same thing - taking a quercetin supplement from time to time. But I am also eating a lot of food that has Quercetin in it.

 

http://www.quercetin...view/food-chart

 

Maybe there's something to the "apple a day - keeps the doctor away".

What is Quercetin supposed to do?

[scuba]

What is Quercetin supposed to do?

 

http://www.bloodjour...so-checked=true

 

http://www.ncbi.nlm....pubmed/25293876

 

http://www.ncbi.nlm....pubmed/21902895

 

Trey disclaimer: Quercetin is not a cure anymore than TKI's are not a cure. Quercetin "may" assist the body in attacking CML. Just another quiver in the arsenal against this malignancy. Full disclosure: I take quercetin from time to time every week, but stress that food rich in quercetin is best. Apples have a lot of quercetin.

[mdszj]

Hopefully that includes applesauce - I hate apple skin and never eat apples for that reason.

[scuba]

Hopefully that includes applesauce - I hate apple skin and never eat apples for that reason.

 

Apple skin is where Quercetin is concentrated. The skin is the best part!