14 replies to this topic

[jwife]

my husband was diagnosed with CML june 10 2011 was put on Tasigna...went into major moleculer response...then put on Sprycel and his last BCR ABL test had a tiny spike and this recent BCR ABL test had another spike...so now doc is testing him to see if he is resisting the drug...has this happened to anyone else...the doc said that this can happen sometimes...the good thing is that there is 3 new drugs out on the market for CML and said not to worry...but me,being a wife, is concerned

[CallMeLucky]

If he reached MMR on Tasigna why did they switch to Sprycel?

What is his history of PCR results?

Did they do FISH test?  What were result history?

What phase when diagnosed?

[jwife]

hi call me lucky, thanks for replying

my husband had to stop tasigna because he had every side effect on the sheet ...which the doc said was rare...so he had to be taken off of it and we went to sloan kettering and saw dr ellen berman and she said the same ...that is why he is on sprycel

his pcr test was good...thats the bcr abl right?

the fish test i have to look into that not sure of it and will have to ask the doctor about it

and we do not know what phase when diagnosed he never had a bone marrow biopsy...the doc at sloan said he should have had one immediately when diagnosed...when we went to sloan he already was in MMR so it did not make sense to do one at that point....but so far he never had one...right now we are just waiting to see if he is resistant to the drug and if he is we are going back to sloan kettering for sure!!!

thanks again

[Trey]

The PCR test is not as accurate as we would like it to be, so it tends to go in a "wavy" pattern on the way down.  So unless he has a significant increase that is verified by a second test showing the same thing, you can relax again (as much as a wife can).

[jwife]

dear trey, thanks for your response...i just hope on monday when he sees his doc that he is not resisting the drug and thanks for the info on the pcr tests...i appreciate that

thanks again

sincerely,

jwife

[beverly]

I think like some diets work for others so does Sprycel or any of the other drugs out there. I just had 1 litter of fluid taped off my left lung 1/3 was collapsed.Never had this issue before never even felt sick just fatigued prior to Sept 14th diagnoses of last year.

Try to relax that's what I am doing if I don't like the outcome I will switch doctors again for a 3rd opinion. Try to stay positive for him. ((HUG))

[jwife]

hi beverly,

thanks for your words of encouragement...i agree if i am not happy with the results..i will go back to sloan kettering and get the right answer....sending hugs back to you

sincerely,

lori

[CallMeLucky]

Berman is a very good Dr, she can be a little dismissive about side effects if you are doing well, but if you are having any difficulty at all with the disease she is someone who's hands you can feel confident putting your life in.

[jwife]

dear call me lucky,

thanks for the info...we like dr. berman and agree that if we run into any problems...she is the one to call....have a nice day

sincerely,

lori

[beverly]

Hi Jwife. I had 1 litter of fluid sucked out of my back stat a couple weeks ago and now it is back. They want to set me up with a 2nd tap when my back still hurts from the last one. Sprycel and Drs are killing me not the CML. I wasn't even sick.. I have been on 100mg Spry since last Oct. Stopping today as my Oncologist 2 weeks ago told me not to stop and there are other things that can be done. She acted like I was being a pain. Hello? It is my body in pain and I have to pay the pills and hospital procedures not them. I feel like a Guinea pig and hate it. I have a new old Dr I am returning to in Gainesville Fl she works with ShandsHospital. All records are just a button push away and she can set it all up for me.  They have a cancer center pulmonary and I feel my body will be in better hands there as I also worked there and they have state of the art facilities. So Firing 2 internists in Ocala FL and probably my 2nd Oncologist. When it comes to painful mistakes that we pay for I don't have the patience anymore.

Good luck I

[jwife]

Dear Beverly,

wow...so sorry you are having so many problems and glad that you are seeing new doctors....i have good news...thank God....my husbands recent bloodwork showed he was in MMR...we are so happy...my husband never had any bad side effects from the Sprycel..thank God for that  but he had every side effect on Tasigna...i realize that everyone is different and certain meds work for certain people...i am sure they will find the right one for you...good luck

sincerely,

jwife

[beverly]

Wonderful! Like a diet they don't all work for the same people. Watch his lungs and rashes though. My fluid is back. I wasn't ill until I took Sprycel now this note from my DR. today.

I want to just let it dissipate as others have done.

Beverly

Dr Warman is a good doctor

Besides she's also a Pulm doctor

I did talk to her Friday and she says the effusion is back

Unilateral effusions in this situation is worrisome for lung cancer

We can change your cml drug but we still need to make sure this is not lung cancer

So go get the pleural tap she recommends

Also we need to see you this week after tap

So call or email the scheduling gals to make an appointment to come in

30 min visit

You will end up short of breath in ER if you don't get rid of the fluid in the lung

Rama

[beverly]

Wonderful! Like a diet they don't all work for the same people. Watch his lungs and rashes though. My fluid is back. I wasn't ill until I took Sprycel now this note from my DR. today.

I want to just let it dissipate as others have done.

Beverly

Dr Warman is a good doctor

Besides she's also a Pulm doctor

I did talk to her Friday and she says the effusion is back

Unilateral effusions in this situation is worrisome for lung cancer

We can change your cml drug but we still need to make sure this is not lung cancer

So go get the pleural tap she recommends

Also we need to see you this week after tap

So call or email the scheduling gals to make an appointment to come in

30 min visit

You will end up short of breath in ER if you don't get rid of the fluid in the lung

Rama

[beverly]

Note from my doc today watchout on Sprycell I wasn't even ill before I took it last Oct.

Beverly

Dr Warman is a good doctor

Besides she's also a Pulm doctor

I did talk to her Friday and she says the effusion is back

Unilateral effusions in this situation is worrisome for lung cancer

We can change your cml drug but we still need to make sure this is not lung cancer

So go get the pleural tap she recommends

Also we need to see you this week after tap

So call or email the scheduling gals to make an appointment to come in

30 min visit

You will end up short of breath in ER if you don't get rid of the fluid in the lung

Rama

[jwife]

dear Beverly,

thanks for the heads up and will keep an eye on his lungs and rashes...i wish you all the best...you are in my prayers

sincerely,

jwife