10 replies to this topic

[janner25]

Just a quick question.  Last week when I was feeling horrible, I stopped taking my tasigna for 2 1/2 days...then started back up.  I think I mentally needed a break.  Dx: October 2010...no additional tests besides CBCs done so far (but all are normal).  I go to the hematologist tomorrow for 3 month check up.

Anyone had experience doing that - and what impacts ifany did it have?  I was dx in chronic phase...counts were low, etc.

Thanks 

[Susan61]

Hi:  You mention that you are newly diagnosed, and your doing good with your numbers etc. on Tasigna.  I hope you know you should never take a break from your medications without doctors orders.  You said your Hematologist.  I hope you are seeing a good Oncologist who is familiar with CML treatment.  That is so important.  I am on Gleevec since Oct. of 2000, and have never taken a break from my medication.  I can remember feeling so lousy in the beginning of treatment, but I just kept doing what I had to do.

     Does sound like your doing well on the Tasigna.  Just always ask your doctors advice on anything you question. May you continue to do well.

[PaulB]

I'm on Tasigna too and I took a break for 2 weeks, but mine was on my Oncologist's orders.  Mine counts did stay the same, but I agree with Susan.  Unless your Doctor tells ya to take a break, keep taking it and just plug thru the bad times.

[jrsboo]

Dear Janner,

Yes, I too am concerned that you may only be seeing a hemotologist.  This was your second posting that referenced a Dr. that is not an oncologist.  Are you seeing an Oncologist that is well versed in CML?

As you may remember, we are twinsies, having been diagnosed almost the same moment.  Did you not have a bone marrow biopsy?  I had CBC' s, then a BCR ABL test called a FSH test then the Bone Marrow, all within 4 days of each other.  After that, I have been having CBC's done every week or two weeks.  I just graduated from 2 weeks to 4 weeks, unless something new pops up.  And I just had my 3 month FSH test.  My Bone Marrow is coming up in 2 months. 

All of this testing is being done by my Oncologist.   My regular physician wants to be in the loop, but is not ordering any tests or taking care of any side effects.  All being done at the cancer center, even down to the dentist I saw for the oral lesions I seem to get all the time.

I just want you to have the best care possible!!!!  This seems very important as you are on one of the newer drugs, and some hemotologists may not be as up to date with all the information that an oncologist may have.

Caroline

[jrsboo]

Oops, forgot to reply about stopping the meds.

DON'T DO IT!!!!  Your body is still full of cancer cells.  Just because your blood counts look normal, that is not an indicator of how many cancer cells you still have.  You have to stay on the TKI's for a while until they can get all the cancer cells turned off.  Dr. Oehler explained it so much better than I can.

The only time I didn't take my pill was when I forgot one night.  I just went upstairs to bed without thinking.  But I have been super vigilant about taking them at the same time every day.   I am on Sprycel and I know that it is easier to take then Tasigna, no food rules.

It gets better.  It has to.  Humans are remarkably adaptive.  That is how we have been able to populate the entire planet.  Your body will get used to the drugs, but it can only do so if you maintain the correct level amount.  By going up and down with the drugs you aren't letting your body adjust. 

And it makes it so much worse. 

Dr. Oehler asked me to switch when I was taking the drug to in the morning because I was having so much trouble sleeping due to hot feet.  Yes, I know, silly side effect, but very annoying!  I had been doing really well up until the switch.  I had energy back, I was going to work a couple of days a week.  Switched it to morning?  BAM!  Slept for 4 days.  Could not function during the day at all.  I even managed to come to a complete halt while trying to get up from the couch and go to bed.  Could not move my feet.  Poor husband had to practically carry me up the stairs and help put me to bed.

I went back to taking it at night.  But even then, I am having some trouble acclimating back to being awake during the day. 

I know it sucks.  But you have to keep doing it.  If it were one of your kids, you would be standing over them with pills in hand!  Telling them to take their pill, no questions asked.

Fondly,

Caroline

[janner25]

Thanks everyone!  He is a hematologist / oncologist and I believe is very versed in CML as is his practice.  They see over 60 CML patients as a practice - and I know one of my friend's father sees my doctor for CML and is doing well after 10 years.

Caroline - I was dx through the wbc and the bcr-abl test by pcr.  No test on the bone marrow yet.  He said that will be 6 months from dx (so 3 months from now).  I have on my list of questions when I'll be getting the bcr-abl test done again...

I know I was crazy to stop the meds...but between getting sick - AGAIN (this time with bronchitis) - and just my overall feeling of horrible - I don't know....but I won't do it again.

My mom (who died 6 years ago in April) saw a hematologist / oncologist (not for cancer but for an immune problem)...anyway - my Mom's doctor called me yesterday because my aunt told her what was happening with me and the CML and she gave me some food for thought of questions to ask the doctor today - particluarly about dosing / medication choice.  She said that everyone reacts differently to all the medications and maybe the dosage / medication may not be right for me if I'm still feeling the way I am after 3 months.  I read her my counts over the phone - and obviously she hasn't seen me in 6 years...but nice to have another doctor's opinion (without going in the office) and will ask the question.  The worst they can say is - nope - stay on it.  I guess I'll know more after my appointment this morning!

Keeping my head up .....

thanks again!

[jrsboo]

Yay!  I was worried for naught!!!!

I hope you have a better day, and all that nasty bronchitis is gonzo!

[janner25]

So I'm back from the doctor...

WBC: 8.2 (last month 7.5)

Hemaglobin: 12.2 (last month 11.9)

Platlets: 216 (last month 343)

Asked my list of questions and pretty much the answers are were all with a wait and see...doctor is hoping the side effects will start to go away in the next 3 months...at my next appt in 3 months, I will get the BMB and PCR at the same time.  Expects me to be in cyogentic remission at that point.  If at the next appointment, the side effects don't go away, then we will discuss other treatment options.  So...as I said...wait and see.

[Susan61]

Hi:  You seem to feel very confident with your doctor and his experience, but I have a question.  My CML was found through a routine yearly exam and blood work, and I worked for the Oncologist who  found my CML.  I was fortunate in that it was found so quick.  When he saw my increased WBC, the first thing he did was a BMB and biopsy of the spleen.  He wanted all that for his baseline so he could see what was going on, and it immediately came back CML

I continued to do BMB every 3 months, and no PCR test until I was in a cytogentic remission.

     I am going back to 1998 when I was diagnosed, but I can see the Oncologists are doing things so differently.

    I would like to hear from someone else who has been treated with just blood work and PCR's instead of the BMB first., and those who got the BMB as first line of treatment when diagnosed.

[janner25]

I actually asked him about frequency of BMB and PCRs..he said he now does BMB at 6 months because since the PCR showed that I have PH+, no point in doing the BMB - and need to give time for the meds to work.  As I'm in cytogenic remission at that time, he will just do PCRs unless the PCR numbers creep up.

Does anyone else do things this way?  

[CallMeLucky]

My first appt after my PCP called me and said "go see a hema/onc, I think you have leukemia", they did a BMB, FISH, and PCR to establish baselines.  For the Cytogenetics, they also did bone marrow slides.  That was done at the local hospital.  They then shipped me off to Sloan Kettering with my results package for a second opinion.  After the consultation I made the decision to be treated at Sloan, so they ran another FISH/PCR to establish their own baseline.  My doctor kind of wanted to do another BMB, and I would have let her, but when I said she would have to do the other side because I am still very sore from the last one, she looked at the everything I brought and said "you know what, I'm ok with the BMB from the other hospital, I'm not going to put you through that again".  I had another FISH/PCR at 3 months, then a FISH/PCR/BMB at six months.  My understanding is I will have another FISH/PCR at 9 months and hopefully nothing going wrong another FISH/PCR/BMB at 12 mo.  At that point if I am MMR I think they will go to just doing PCRs