6 replies to this topic

[Chris1579]

Hello, All,

It has been a little bit since I have been on this site; I hope everyone is doing well!

I just picked up my Dad's 3 month post Tasgnia FISH result -

Type of signals                    # of cells (%)

1R, 1G, 1F, 1A                    33 (16.5%)

R, 1G, 1F, 2A                        15 (7.5%)

2R, 2G                                   152 (76.0%)

Total                                        200

WBC     6.2

HGB     11.4 L

HCT     35.2 L

PLT     210

RBC     4.13 L

MCV     85.2   

MCH     27.6

MCHC     32.4

RDW     15.8 H

MPV     10.5

NEUT#     4.2

LYMPH#     1.4

MOM#     .04

EOS#     0.3

BASO#     0.0

EARLY GRN#     0.0

It is my opinion, that we are taught to never question a doctor or the treatment plan the doctor says to follow, they are the doctor and you should do exactly as they say - in my Dad's case, he is 74 years old - they are looking to take him to a 0% or total remission (which I know is the goal with everyone) - he currently is on 300 mg of Tasgnia which he started taking March 19, 2012 (some may remember it was a battle to even get him to start taking the med) - he has had some side effects but all in all is doing well - about every 3 days he has, what I call a bad day, since this latest FISH the doctor has ordered him to double the does (600 mg per day)- I should mention here that he has been having some blood pressure issues with his blood pressure dropping to a very low level (110/60 even lower sometimes) - he even had slurred speech about a week and half ago while I was one the phone with him - he did not know the next day he was slurring - after the major "run-around" from all the docs assistants and nurses I am told it could have been a TKI (mini stroke) and that his blood pressure med may need to be reduced or changed - call his primary care, blah, blah, blah.  They went on to say he must up the dose - that 300 mg is not considered a treatment dose - ok than why is he showing good results, not perfect, but good (at 74 Dad says good is good) not 0% but still good - one of the questions is, is 0% a realistic goal without him having to give up his quality of life, something HE does not want to give up (in otherwords, having nothing BUT bad days).  The good days make the bad day tolerable.  What do you guys think about doubling the dose of the Tasgina?  What do you think about the 3 month FISH result?  Is total remission a realistic goal at 74 without giving up quality of life?  Keep in mind he has been on the drug for 3 months - his cells were 90% leukemic now they are about 16.5% leukemic, sure seems like good progress for 300 mg per day in such a short amount of time - should we give this a little more time?

As always I appreciate and value everyone's opinion and knowledge on the subject!

God Bless

XO

Christa

[hannibellemo]

Hi, Christa,

Good to hear from you and to know your dad is taking his medication!

Depends on what they mean by 0% - if they are talking 0% FISH or CCyR then that is good and the minimum  benchmark all of us hope to reach. If they are talking 0% PCR on the International scale then I'd be skeptical. It's not necessary to remain progression free and the majority of people never reach it.

It used to be that 200 mg. of Tasigna twice a day was the starting dose but they've lowered that to 150 mg twice a day for newly diagnosed and the 400 mg. daily is reserved for resistant disease. I would question the 600 mg. but it may be acceptable.

I can't tell where his FISH is with all of those percentages you've listed, but if it's 76% they could have gone either way, given him another 3 months or raise the TKI - looks like they chose to raise the dosage. The next step if this doesn't lower the FISH would be to switch to another drug.

If your Dad had a mini stroke, that is sometimes referred to as a TIA (transient ischemic attack) TKI is the drug we take for our CML

Keep us informed and good luck!

Pat

[CallMeLucky]

A few things to consider.  First is that looking at it as doubling up may not be appropriate - the fact is he is on half dose now, so "doubling up" gets him to the regular dose of 600 mg per day (300 BID).  There is a call for 400 mg once a day in cases of side effects.  For hard cases they go as much as 800 mg per day (400 mg BID)

I'm not saying he should be on full dose, but it helps to keep context.  Next is that 0% FISH is not a full remission.  The closest thing to a full remission is CMR which is a negative PCR.  A negative FISH is only about a 2 log reduction on PCR.  Reaching a negative FISH is an important goal.  Reaching a negative PCR is a lot more debatable with regard to how important it is. 

In your dad's case I think it is more about the fact that they want to get him on the "standard" dose then it is about his progress.  His progress is great and anyone who says otherwise needs to read the NCCN guidelines and then explain why they don't apply to your dad.  Your dad has had a Major Cytogenic Response at 3 months.  The milestone for three months is complete hematological response so he is ahead of the game.  According to NCCN guidelines, there would be no reason to change treatment until 12mo with no further improvement.  Of course that is just the guidelines.

In your case it seems you could go either way and make a good case for both options.  Keeping him where he is, he is responding well is a valid argument.  On the other hand they hold big trials for this stuff and they have determined that 600 mg is the best dosage, so if he can tolerate it, then you can make the case it is better to be on the standard dosage than a lower dosage unless there is a specific reason.

it's a tough call, I forget who your dad's doctor is, but you can always go for a second opinion.  Although I think most doctors are going to say he should go up to standard dose and see if he can tolerate it and if he can't then they will lower him again.  If it were me, I would bring a copy of the NCCN guidelines with me and make the case to go up to 400mg once per day, which is an approved treatment plan, and say let's evaluate again in three months.  make sure he can tolerate the 400mg once per day and see if he makes more progress on his FISH.  That would seem to be the best compromise.

[Trey]

This is where many Oncs fail -- they try to stuff every patient into the same mold.  Your Dad at age 76 should be allowed to stay on a dose that makes good progress, even if it is not speedy.  Even then, he has made very good progress so far, going from 96% FISH to 24% FISH.  And especially since the higher dosage is hard on him, the lower dosage should be seriously considered.  Quality of life is an important issue and should be considered, but some Oncs refuse to do so. 

[janne]

Christa,

These replies are all terrific in regard to your particular situation with your father's progress. One thing to be aware of is that , most hospitals, clinics etc generally support the patient's rights(or at least they post it on their wall so you can see it) when seeking medical care. This is one of many of your rights as a patient: 

• The patient has the right to participate in the development and
  implementation of his or her plan of care.

In my opinion, that does not mean saying 'yes' to everything.

We wish your father well and do keep us informed.

Janne 

[GerryL]

Hi Christa,

Just on a side note with the BP - I came off my Blood Pressure medication after I started Gleevec, it bought my blood pressure down. Tasigna is possibly doing the same thing with your dad.

[Chris1579]

Thank you so much guys and gals - this information was most valuable!