18 replies to this topic

[djm]

When I was first diagnosed back in May, I was put on Gleevec (600mg).  At the 3-month mark, I hadn't quite reached a Zero Fish, I achieved 16%.  At this time I was also dealing with some edema, puffy face and eyes.  So, my onc thought that because of not achieving a zero fish and the fact I was dealing with some edema she felt it would be good to switch to Tasigna.  I have now been on Tasigna (800mg) for one month and as of now the only side effects that I am contending with is:

1. Itchy scalp and face (primarily where I shave)
2. Rash, only on my arms and on the inside of the arm where there is no hair. This rash, if it is a rash, does not itch but I can clearly see a lot of small bumps.  They kind of look like goose bumps, but with no hair.

Now my onc just called me a little while to check up on me and I told her I was still dealing with this rash and that I was going to go get some Benadryl or something to see if that would help.  Instead, she says, "Hold off on that, I'm going to switch you to Sprycel."

So, is the fact that I'm dealing with these (2) side effects reason enough to switch me?  I don't understand why I can't just be treated for the rash.  I feel fine, I don't feel any ill effects.  Could the fact that I have this rash indicate that Tasigna is not working?  From what I have read on this from others taking Tasigna, that would not seem to be the case.

My big worry is that I am now being switched to the final approved drug, excluding Bosutinib.  I mean, it seems to me, that I am going to have to deal with some sort of side effect, regardless of the drug.  So, if I switch to Sprycel and I develop some sort of side effect, what next?  I feel like she is switching me, just to switch me.

I'm more than willing to deal with this rash and itchy scalp from Tasigna. 

DJ

[CMLSurvivor]

If your side effects are not affecting your quality of life and you are having good response then I would say no. You should only switch medication if it is not working and/or the side effects are so bad you are unable to function in your normal day to day life.

[djm]

As of right now, no, my quality of life is unhindered.  So, the question becomes whether or not I am having a good response.  We won't know that till my next 6-month, which is in November.

I'd like to think I could wait until November to see what my PCR/FISH is before making another change in medication.

[Susan61]

Hi DJ:  I have always been on Gleevec 400mg, and I get the puffy eyes and edema, but the Gleevec has done what we wanted it to do.  If you are doing okay, I would stay on the Tasigna. I think your doctor should at least wait till your Nov. PCR test to see what your response is.  I would feel like you do.  There are only so many TKI drugs available right now, and why switch you to the Sprycel right away.  Tell your doctor how you feel about this switch.

Susan

[Happycat]

Sounds to me like you are reading between the lines to figure out why she wants to switch you. I'd call and ask for her reasoning behind it, and let her know of any concerns you have (new side effects). There might be more to her decision than you know, in other words. Hopefully, it's not because she just had lunch with sales rep for sprycel! 

Traci

[Trey]

These are the people on the freeway who switch lanes without signalling and cross over three lanes at one time, only to swerve back through the same three lanes without signalling again.  Your Onc is a bad driver, and needs to be pulled over and given a citation.  Tell her to slow down so she doesn't hurt someone. 

[Marnie]

Trey. . .you crack me up.  I would enjoy your analogy even more if I weren't going to traffic court next month.  I DID stop at that damned stop sign!  I DID!

[KerriD]

I would not change meds again.  I am on Tasigna and several of the side effects I had in the beginning dissapated within a 3 months including rashes.  I have luckily had a good strong response to Tasigna.   I hope you do to.

Kerri

[scuba]

http://www.cancernet...e/10165/2100642

Seems to me all the TKI's basically work. Although the second generation give a deeper response overall - survival and long term prognosis seems to be the same. So, in my mind, one should switch only if the drug they are taking is clearly not working, has unacceptable side affects or you don't like the color of the pill. Other than that - if it's working and counts are dropping, looks like you're on your way and should avoid changing lanes. Most accidents occur during lane changes and can lead to legal action

Side Affects and dose levels seem to be of growing importance as a consideration and not just what is the best drug that gets the fastest response.

[CallMeLucky]

Your doctor is willing to take chances with you in order to achieve an end point that seems very important to her but is not backed up by the experts.

1) She started you on 400 mg of Gleevec and then within a few weeks up'd you to 600mg.  If I remember correctly she said something to the effect of not being conservative when it comes to treatment.  I said it then and I'll say it again now - it is easy for her to be aggressive with treatment when she is not the one on the treatment.

2) At three months the expected milestone is complete hematological response, which you had.  You had a major cytogenetic response but it wasn't good enough for her so she switched you to Tasigna at 800mg.  Note that 800 mg is the higher of the two approved dosage recommendations for Tasigna.  Most people starting out on Tasigna would be put on 600mg.  800 mg is typically for higher risk or individuals that failed another TKI.  If she thinks you failed Gleevec then she is not a very good CML doctor.  If you are high risk then she needs to explain to you why you are high risk so you understand what she is doing.

3) After being on Tasigna for 30 days and not even having any test results back she is looking to switch you to Sprycel due to typical low grade side effects or some other reason that she has not disclosed.  I would be interested to know what dosage of Sprycel she suggests.  I wouldn't be surprised if she opted for 140mg, which is kind of ridiculous.

Your doctor's approach shows a lack of patience and understanding of how CML works.  Her recklessness is not in your best interest.  If I were you I would seek out a second opinion from someone with more experience treating CML patients.  If you do not want to jump that quickly then you should write all of your questions down, get a copy of NCCN guidelines for treating CML, which will show that her approach is not following guidelines, and have a real heart to heart with her about what she is doing and why she feels it is necessary to treat you the way she has.  A response that falls anywhere in the realm of "I just want to obliterate your cancer" should be concerning.

You're not trying on shoes, these are serious drugs with potentially serious side effects.  You appear to be very lucky that you do not have many side effects, I don't see why she feels the need to find the one you do have a problem with.  What is she going to do if you develop a pleural effusion on Sprycel - suggest you go to BMT because she tried every available drug and they didn't work for you?  Ludicrous!

[djm]

Thank You all for your responses.

I am going to be setting up another appointment to see her and discuss this in more detail.  This is too important to wait till I see her again on the 26th for another blood draw. 

This is just so frustrating, especially after having such good progress with blood counts and both my FISH (96% to 16%) and PCR (29.3% to 3.3%), only to be derailed by side-effects.  It doesn't make much sense, to me.

It seems most everyone has to deal with some sort of side effect.  It would seem to me, that treating the side effects would be the way to approach them.  Would it not?  Can these side effects be treated?

Again thanks everyone for your responses, hopefully your own journey through the wasteland that is CML is positive and smooth.

[djm]

To be fair, I did have one blood test done after being on Tasigna for two weeks.  But still, this was just a CMP, and this would not tell whether or not how well I was responding to Tasigna.  Am I right in that?

[CallMeLucky]

The CBC is to make sure your counts don't tank on the new drug and also to check your liver.  What about EKG? I'm curious if they have been. Monitoring you heart since you were put on Tasigna.  They should be.

[djm]

Yea, I had an EKG before I started the Tasigna and another 3 weeks later.  Both were normal.  So, good news on that front.

[djm]

I am going to go the route of getting another opinion.  I'd like to see if I can get in to see Dr. Talpaz with U of M.  Anyone here have experience with getting in to see Dr. Talpaz?

[PhoenixPat]

djm-

http://community.lls...e/139188#139188

[djm]

Well, I have my appointment for U of M. Unfortunately I won't be seeing Dr. Talpaz, as he is dealing with some personal medical issues of his own, but I will be seeing a doctor that he has recommended. He will have recommendations for my case as well.  At least he will be kept in the loop.  Hopefully he gets to feeling better real soon, he is a big name in the realm of CML.  So, in the meantime, I can take some comfort in knowing that come the 18th, I'll know where I stand and how to proceed.