13 replies to this topic

[cam_kris]

Hi Everyone!

My 6 month checkup is on Wed.  I have been waiting for this day that seems like forever.  I know that everything is going to turn out just fine. (I have been telling myself that

for the last 3 months!!)   My blood tests from end of April till last friday

have been great.  I feel good, besides a bit tired, but that is to be expected.

I have to tell you I have never ever been so nervous.  My stomach is in my throat, cant sleep and  I'm actually a bit shaky,  I am terrified that the Tasigna is not working,   I have been on

600mg Tasigna a day since April 18th and have done wonderful on it. 

I guess Im so scared as i believe my dr did this to me, he told me that if it doesnt work, advance measures will be taken.  I have posted this before and had great comments stating he is full of it

and I can try the other two and there is other meds that I can try as well if my numbers dont change.

I just want those numbers down to as normal as I can go.  I do realize that I  wont get the major
molecular response but something close will do for right now!!  Actually if the numbers just go down, i would be happy

I guess I have never been this worried, scared, nervous about anything for years !!!  and know, that is all i am.  hard to adjust too!!

I just wanted to post to get it off my chest. 

Thanks for listening!

Kris

[Pin]

Hi Kris, oh I know - the waiting for tests is so hard. Good luck with your results! It is so likely that they will be much much better than your last one - Tasigna works very well for a lot of people.

Cheers,

Pin.

[TeddyB]

I have my 6 month checkup on Wed as well, 400mg Gleevec for me, so far so good.

Just remember the doctors are there to help you, and if you had a choice to go or not you would still go. (i hope)

Also, you will be just fine, as will hopefully i

There is a very small chance the drugs wont work, but if you had a good initial response then the chances are, it will last, so keep your chin up. At any rate all we can do is take our pills as prescribed, and try to enjoy life as much as possible.

I know how you feel, believe me, but i am actually a bit calmer now than on my 3month checkup, i guess you get a little more used to it over time. I probably wont get much sleep tonight because i am not looking forward to the bmb, but i will at least try.

Teddy

[alexamay09]

Hi Kris - just wanted to offer my support.  Waiting for test results is torture and it never gets any easier whatever the illness.  I am not yet at the 3 month point, but know I will be beside myself with anxiety when the time comes - I've to have a bone marrow aspiration at 3 and 6 months as my first was a complete failure. As a result I have had no confirmation about the stage of my disease - all very frightening.

I am thinking about you - please let us know how you get on.

Alex

xx

[CallMeLucky]

Unfortunately you have a negative doctor who has not helped you in this time.  He has taken your good progress so far and made you to feel that it is not good enough when in fact your response so far has been great.  Sometimes I guess I can understand where these doctors come from, a lot of them don't really get this TKI era.  They are used to patients dying and just accepting that.  Your 3 month results were great and the odds are much more in your favor that things will go well then not go well.  So don't let negative Nelly ruin things for you.  Hear what he has to say and be prepared with questions.  Many oncologists feel they must obliterate the cancer as fast as possible or your treatment is a failure.  This shows a lack of understanding of CML and the ability of TKI drugs to control the disease.  Many oncologists feel if there is any sign of cancer cells then inevitably the cancer will come back.  Fortunately for us there are many people living with CML cells in their body because the TKI drugs keep it under control. For some it does it better than others, but look at the overall survival and progression free rates of CML patients responding well to TKI drugs and you will see that most live their lives.  This is still new to you and the fear early on is understandable.  Try to hang in there, and go into it knowing that some test results are going to be better than others, but you are a long way from being in "trouble".

Good luck

[cam_kris]

Thank you everyone for all your responses!!  I so do appreciate it!!  If my onc is negitive tomorrow that is it, i am moving on and going to find someone that can be happy where i am at with confidence I will continue to make huge progress steps!     Hard enough to stay possitive muchless him thinking

everything is wrong if you havent reach the molecular response.  I so do want to be there too, but if not and my numbers are going down, CELEBRATE!! 

i have made reservations at the nearest casino so no matter what......we are going out...

Thanks again everyone and will let you know how it all goes!

Kris

[cam_kris]

Hi TeddyB

Yes absolutely I would go anyway.  I am determined to get ahead of this disease and keep it in check.  or at least being involved

I pray you too will get great results!!! 

are you being put to sleep for your BMB?  I wont do it if they dont, and i have had two.  My Dr didnt want to put me under, he thinks he has the best technic, well He can use it on everyone else, but not me!

I am a baby and got worse with this crap!

Post back on here and let me know your results ok!?  I will in a couple days, I am going to go celebrate either way. 

Take care and Good Luck!!!

Kris

[TeddyB]

Will do Kris!

Taking a shower now, and driving to the cancer center.

They just give me diazepam(some kind of valium) for the anxiety an hour or so before the bmb, even though being put to sleep sounds nice

Last time they did that, the bmb went just fine, i was much more relaxed, and even though the dr had to "go back inn" to get more marrow cause he didnt get enough the first 2 times, i was perfectly calm the whole time. The first time i had a bmb, was with no chill pill, and that time it was a nightmare, so i will always continue to ask for diazepam before any future bmb.

Actually, i slept 6 hours last night, and i am feeling quite well so far (knock on wood)

I will post my results as soon as i get them.

Best of luck to you too!!!!

[GerryL]

Hi Teddy

Good luck, I had my blood test yesterday and am booked to see my GP to get results on the 17th November.

[TeddyB]

Thanks GerryL.

Went okay i guess, first the nurse missed with the blood draw, then the bmb was pretty horrific as she missed a few times and had to take the "needle" in and out a few times, but she got it in the end. Going for a walk now to loosen up my "ass" a bit

I asked the onc if i had to take the 12month bmb since my 3 month bmb results were almost ccyr, but she said it was mandatory. I tried to talk with her about it, and she agreed, that as long as my 6month bmb was good (which we wont know for a few months) and we saw a decrease in pcr results, then the 12 month bmb might not be necessary, but she said it wasnt really optional, so i probably have to take it anyway. Oh well, its 6 month until the next bmb, so i`ll manage, but it seems here in Norway you have to have bmb`s every 12 months after ccyr until you reach mmr.

TeddyB

[djm]

I think there is some truth to this.  At 3-months, my previous oncologist switched me from Gleevec to Tasigna 800mg.  I had developed some edema and my FISH hadn't reached 0% were the reasons for the change.  Then at about the 4-month mark, she wanted to switch me to Sprycel due to a  rash on the inside of my arms and an itchy scalp.  I sought out Dr. Talpaz at U of M at this point because it didn't make sense to me for the change.  I wasn't able to get Dr. Talpaz as my doctor, unfortunately.  I got a doctor though, that he recommended.  Well,at the end of my visit with my new doc, to help make me feel a little more at ease, he went and talked with Dr. Talpaz.  They both came back in the room, and told me that I was to stay on my current medication, Tasigna. There was no reason to change and the rash wasn't so bad that a change in medication was warranted.  In fact, Dr. Talpaz even said that it was questionable for the change from Gleevec to Tasigna at my 3-month mark, given the response I had.  .Also, a 0% FISH at 3-month is unrealistic, though I suppose, it could be provided a person was caught very very early, maybe?  For me, it was unrealistic.

What I learned from my new doc is that response is paramount.  As long as your FISH/PCR numbers are declining that is about all that matters. 

[CallMeLucky]

There was a study done that showed something like less than 10% FISH at 3 months would a good prognostic indicator for potentially stopping treatment at some point in the future (and yes that is filled with assumptions about assumptions).  I can only assume that the doctors pushing for 0% FISH read this study and extrapolated their own ideas about how things should be done.  I would suggest sticking with what the experts say.

[GerryL]

Hi Teddy,

Made me giggle with your comment about 'going for a walk ...'

My first BMB was done under local, one of the nurses said "breathe through it", I personally found saying ouch a few times helped. My Hematologist no longer did BMBs, but the doctor at the pathology place where I went, was very experienced at doing them, so it wasn't too bad.

A couple of months later I switched doctors and my new doc wanted to do another BMB (4 months into treatment). This was done at a hospital using a drip, I was wide awake but couldn't feel it. The nurse putting the drip in said to me the drugs would stop me having nightmares about the BMB. I thought to myself, since I'd already had one under a local and didn't get nightmares, then it might be a bit late now. Doc told me a few weeks later I was CCyR and that was the last BMB. Mind you I had been hoping for MMR. LOL

[TeddyB]

Hehe, glad to hear you are done with them.

Maybe, just maybe if i get a really good result on this bmb/pcr and the next pcr in 3 months, they wont make me do the 12 month bmb.

But unfortunately i always do what the onc orders, so if he/she tells me to strip down to my ass, and lay on a bench while he or she drills a hole in me, i will probably comply

On second thought, i will only take off my shirt, cause i will want the sternum procedure, as this didnt hurt one bit compared to the hip bone. I think it really comes down to who does the bmb, and not where its done, but the guy who did mine in the sternum really knew his stuff.

Take care GerryL

Teddy