11 replies to this topic

[will080500]

Hi,

 

My husband was diagnosed with cml in April 2010.  He was on Gleevec for about 6 months but side effects were bad so they switched him to Tasigna 300mg twice a day, which is still on.   In April his PCR was 0.031 and in June went up to 0.156.  Had a bone marrow biopsy done and that looked good.  We just switched to this oncologist in January and she freaked us out the last appointment when he gave us results and said he might be a candidate for bone marrow transplant but she said she will consult with MD Anderson (hospital is affiliated with them.)  We go back to her next week and get next set of blood results and see what MD Anderson said. 

 

Just wanted to see if anyone had any thoughts.

 

Thanks!

 

Wendy

 

[Marnie]

Seems a bit early to be seriously thinking about transplant. 

[Trey]

My thought is this:  His new Onc does not know what she is doing, and you should dump her -- fast.

 

Your husband is still nearly MMR (3 log reduction) which is considered an "optimal" desired response.  There is no way any Onc in their right mind should mention transplant in his situation.  Only a loss of CCyR (approx 1.0% PCR) would be a cause for real concern, but even then a change in drugs should be the response.  The PCR could be re-accomplished soon, or he could wait for the next cycle. 

 

If the Onc mentions transplant, ask her what basis she is using for that assessment.  If she says it is due to a nearly 1 log increase in PCR, tell her that 1 log increase issue only applies if a simultaneous loss of CCyR occurs, and it does NOT apply at low level PCR numbers.

[will080500]

Thanks Trey!

 

We will go to next appointment and see what she has to say but have been researching some other doctors in our area.

 

  It was a very confusing appointment and I am not sure if she meant now he could be a candidate for a transplant or maybe in the future she said he's very young(46), but I did not like the fact it mentioned at all at this point!

 

 

Thanks again!

 

Wendy

[Melanie]

Hi Wendy,

Just want to add that the information she gets back from MD Anderson will likely be the same as Trey's. As long as he is still Ccyr, they will probably suggest the wait and see approach on his next PCR test, which can fluctuate quite a bit depending on the lab. They are not transplant happy at MD Anderson and have a lot more experience to pull from for their treatment plans.

Just a side note on something that might help in remembering exactly what the doctor says, especially when you're discussing less than optimal test results .... I record the whole appointment discussion on my phone. If you have that option on your phone, it may help you later when you're trying to remember exactly what was said and processing the information. I just turn it on when the doctor walks in and leave it in my lap. It's been a big help for me and my foggy brain.

Take care and I hope this is just a little bump in your husband's journey that turns out to be nothing to worry about.

[will080500]

Thanks for the tip  I will definitely do that with my phone!

[Marnie]

That's a great idea.  I usually take notes, but the phone idea is even better.  Do you let the doc know that you're recording the conversation?  I would think that legally you would need to.

[Pin]

I asked my doctor at my first appointment if I could record it, just so I could be reminded of what was said later but she was not interested at all. I didn't think I could do it without her consent, so I just had to take notes...I'm sure it would have saved me a lot of stress if she'd let me, I'm good at twisting things that were said into more than they are!

[JPD]

Pin - holy cripes.  My onc offers to record all my appointments - with his tape recorder no less.  I would just tell your doctor that you ARE going to tape them.  If they resist that, Id suggest get another doc.

[Pin]

That's nice of them - she didn't flat out say no, she just looked at me weird and said she didn't think I needed to, and that it wasn't necessary. Kind of discouraging, I wasn't going to argue on my first visit. She's a nice doctor generally though. I guess maybe it's intimidating to be recorded, just in case you get something wrong?

[Antilogical]

I just had my own little mini scare with a rising PCR.  It's been holding at 0.002% on 300mg Gleevec for a year. My latest PCR showed 0.0248% and I nearly flipped - until I noticed something new.  The lab just switched to reporting in the IS standard.  The corresponding old calculation is 0.003485% - up, but not really so significant.  WHEW!  It pays to read and re-read.

[Melanie]

The first time I recorded the appointment, I didn't say anything about it...just practiced beforehand on how to do it without making it a big deal. Felt like I was being sneaky so at the next appointment, I simply told them I was recording it so I could remember what had been said. (foggy brain). No one complained and had one nurse practioner say it was a great idea. I know the doctors record their own notes for their records, but you typically can't get access to those immediately like you can on your phone. It's been very helpful to me.

If you or your doctor aren't comfortable with recording the appointment, then ask for a copy of the doctor's notes on your husband's medical record. Takes longer, but at least you'll have all the information and not have to rely on your memory for every detail. Those notes are very informative and interesting to read sometimes.

Hope this helps...Melanie