11 replies to this topic

[ArtTeacher]

Friends, we need some advice.  My husband was diagnosed with CML last July.  He was initially treated with Sprycel, but was taken off due to less than optimal pcr results and also issues with anemia and low platelets.  His pcr result was 12 at 6 months on Sprycel.  He was switched to Bosulif.  I posted a discussion previously about his issues with terrible GI side effects.  About a month or so ago, he was taken off of Bosulif due to elevated liver enzymes.  When he was told to stop taking his meds, his liver enzymes were 909 and 240-something (ALT and whatever the other one is- can never remember which is which).  We found out later that his liver enzymes were elevated enough to stop taking his meds the month before, only no one notified us or maybe no one noticed?!  How does that happen?  We are not very happy about that.  He was extremely sick right before he was told to stop taking Bosulif and we can only guess if maybe that was due to his liver being so taxed.  He was off meds for three weeks until his liver enzymes recovered enough to start back on Bosulif at a lower dose (400 mg).  For the last two weeks he's been back on the lower dose with very minimal side effects.  We were really hopeful things had settled down and he could achieve that elusive pcr result we have been hoping for.  He went for blood work this week and bad news.  His liver enzymes are elevated again- the high one was 606, so they went up quick this time.  So it's off Bosulif now and on to another option.  I'm not exactly sure which one, Gleevec or Tasigna are the only ones left, right?

We are feeling really discouraged.  Nothing has gone as we have hoped it would.  The more I read about (and I'm trying not to consult Dr. Google too often) the more I am realizing that we may have started out treatment the wrong way.  Why didn't we start on Gleevec?  Also, he never had a bone marrow biopsy.  He was diagnosed through a genetic test, I believe?  He was tested for evidence of the Ph+ chromosome and his doctor diagnosed CML through that test. His white count at the time of diagnosis was 356k.   We would really like to seek a second opinion, particularly from a doctor who has a lot experience in treating CML.  We live in a smaller city and there are only a couple of options for cancer clinics.  We would be willing to travel somewhere else to have someone look over all his information and tell us that we are on the right track.  We live in between Charlotte and Atlanta.  How do we go about setting up an appointment with someone?  And with who?   Do we ask his current doctor for a referral?  Will insurance cover second opinions?  Should we ask for a bone marrow biopsy even though he has been on two different tki's for the past year?  He is really not excited about the possibility of a bmb.

Ah, I am up way too late worrying.  And this is a totally random question- Has anyone gone to one of those Team Ph+ CML Game Day summits?  There is one in Charlotte next weekend and we are not too far away.  Kareem Abdul-Jabbar is a speaker- put on by Novartis pharmaceuticals.  Just wondering if it would be worth our time to go. 

Thanks so much for any advice.    I really appreciate the support.

[GerryL]

Hi Art Teacher,

I can't offer much help with docs as I'm from Australia and we have a different medical system. By the sound of it you need to find youself a new doc. I'm not sure why your doc didn't do a BMB when Sprycel wasn't working. A biopsy is usually okay for most of us, so your husband shouldn't worry too much about one.

There is also Ponatnib as a third option.

You'll be getting more help from others. Just want to wish you and your husband well.

[chriskuo]

Went to a program like you are talking about with Kareem.  It was called something else so maybe the format will be slightly different.

It tends to be relatively basic.  It won't answer your specific issues, but it should give you the foundation you need to confidently pursue a second opinion (which I think most insurance plans should cover).  You definitely need to see a big city specialist.

[hannibellemo]

I'm sorry your husband is having such a difficult time. It would be good to get a second opinion. Since it is not just Ph+ that is an issue with CML it is an NCCN guideline that a BMB/A be done for dx, not just for CML diagnosis but for other problems in the bone marrow and other chromosomal issues that could determine treatment.

According to Trey, "Bosulif has a profile similar to Sprycel" (my assumption follows) and since your husband had so many side effects with Sprycel it seems logical to me that Bosulif might not have been the best 2nd choice. I also had liver issues, but on Gleevec. At 9 months my ALT went up to 1300+ and AST was up to 700+. After a break of 7 months they recovered and I was switched to Sprycel 100mg. I had a very difficult time acclimating to Sprycel but after 4-5 months things improved tremendously. I then developed a pleural effusion after 2.5 years and was off Sprycel for about 3 months for that to resolve and I've been on Sprycel 50mg. for the last two years and doing great (knock wood).

I tell you this to emphasize that things aren't always smooth sailing for many of us but we can perservere. Your husband has options and I would pursue a different doc with CML experience to help him over this rough patch.

The networking opportunities at this forum might be greater than what you would gain listening to KAJ. Meeting other people with CML and talking to them about their experiences and your husband's experience would hold the most value to me.

Good luck to you both!

Pat

[Trey]

A Specialist would be a reasonable idea, but since his issues are mainly intolerance to drugs (mainly liver reaction) it might be more worthwhile to get your current Onc to experiment with low dosage drugs.  That is what a Specialist would do, but it might take longer that way.  With all the drug breaks his treatment of the CML is not making much progress, so time is important.  If it were me I would forget the Bosulif and go back to low dose Spycel, re-starting at about 20mg and working up as needed, or else start Tasigna at half dose.  So he needs to get on any drug he can stick with, even if low dosage.  The Sprycel may already be approved by the insurance, so that may be a quick re-start of a drug, otherwise half dose Tasigna is also a good way to go.  Pat mentioned above that Sprycel and Bosulif have similar profiles (true) but since the issue here is side effects that may not be the main issue in this case.  But Pat is a good student anyway, and she may turn out to be correct, which would mean low dose Tasigna would be a better approach.

I would also ask the Onc to do a BMB, which is what a Specialist would require anyway. 

Others can see more information about his issues with Bosulif at your previous post:

http://community.lls.org/thread/20179

[winespritzer]

Dear ArtTeacher,

When I was first diagnosed on 1/14/14, I talked to LLS. While LLS cannot recommend a specific specialist near where you live, they can give you sources to find a doctor near Charlotte or Atlanta. Both of those cities have great universities and hospitals so I am certain you will find some comforting expertise. 

I had a second opinion at Memorial Sloan Kettering and chose in the end to stay with my small town hematologist- oncologist, mostly because the 2nd opinion gave me the exact same protocol, although with more heads up regarding Sprycel's toxicity.. I also knew that should something not feel right down the road, I can go return to Sloan Kettering.

I didn't know if my ins would pay for the 2nd opinion but decided my health was on the line and I'd worry about the $$$ later.  Not even sure right now if the ins has covered it. Not all the bills have come in.

I was supposed to be driving south the day Kareem would be on hand in Charlotte so I registered. I wanted to attend simply to learn more about CML.  This new vocabulary is daunting, to say the least.  Alas, I cannot attend.

However, this site - Trey, Gerry, Hanni, Marathon et al)  and my LLS support group serve as my scaffolds.  LLS also found me a peer person who has walked me through her experiences on Gleevac and Sprycel.

Good luck and hope you find the other doctor by week's end, also that you can finesse your way into getting an appointment.  I used everything I had ever learned in my decades of teaching recalcitrant students!

If anything the 2nd doctor can back up the work of the current one.

Winespritzer

[Melanie]

Hello Art Teacher,

So sorry your husband is having such difficulties. As far as second opinions, most insurance companies will cover them and it's already been mentioned about how to find a specialist in your area. The second opinion would be good for reassurance if nothing else, although in my experience when asking for a second opinion consultation, you get far more time and attention.  in that setting, you usually have a list of questions and the answers make a little more sense because you're a little better educated about the disease at that point, rather than the state of mind you find yourself in at the beginning of this journey. I highly recommend a second opinion and your existing doctor should welcome that approach. My local onc was more than gracious and asked his opinion on who I should go to and sent all my medical records to the specialist. Make sure you have a copy of your records with you so the specialist has some history to use. It could be that both doctors will work together to get the best treatment for your husband. That's what happened in my case and it's worked out well.

The question about Sprycel and Bosulif being so similar so why go from one to the other is interesting. It's thought that the side effects of Bosulif are not as severe as Sprycel, but the liver has always been the biggest issue with Bosulif so I'm concerned that your doctor continues with it. I agree with Trey that lower dosage of any TKI  that your husband can stay on is the best approach.  It takes time and experience to find the right fit, so maybe that would be where the specialist would help the most. Maybe having enough experience with patients that have sub optimal responses to the different TKI's would be an advantage.  That's what my local onc thought and it proved to be right.

Hope you get the answers and help you need. There's a lot of people on this board that have had less than optimal response to these drugs, but have found ways to become stable and generally have a good quality of life. They all helped me as I was going through all kinds of issues and they still do. Sometimes it just takes time and trying different options.  I pray your husband finds his soon. Take care and let us know how he's doing.

[RayT]

RE: Novartis Game Day with Kareem:

I went to the presentation in Boston several weeks ago.  It's FREE, good food (breakfast and lunch) and provided excellent information in easy to understand terms about CML and the current Tx's. There is a panel discussion that gives you a chance to ask questions from a doctor, nutritionist and social worker.  I was glad I attended but wouldn't recommend that anyone spend major $$ or put off other important commitments to attend.

[johnny99]

Hello ArtTeacher!

I couldn't agree more with Trey. If it were me I would push for low dose sprycel or tasignia and work up to maximum tolerated dose. The initial 12% pcr on sprycel at 6months was not great, but it was a response, most likely explained by the lowered dose / pauses. As I have found out, not being on full dose means (on average) a slower response. This is logical. There is a reason they decided 100mg is the standard.

Where his platelets and ANC able to tolerate 50mg? My old onc was overly cautious in this regard, but as longs as PLT>40k and not decreasing no drug break is needed. A specialist may have the confidence/experience to make the right calls. I was as low as 19k and had no bleeding or bruising.

Also before I start anything new I would request a baseline BMB (karyotyping and morphology) and PCR to be able to tell how effective the new course of action is.

Also, do see a specialist. It will give you you a peace of mind, you will be in safe hands. After all, this is cancer, why take unnecessary risks?

All the best!

John

[ArtTeacher]

I meant to get back on here and reply earlier, but I'm not sure where this week went to.  It flew by!  I just wanted to say thank you to everyone who chimed in with advice.  My husband has an appointment to check his liver counts next week, so I think we are going to talk to his oncologist about seeing a specialist and possibly getting a bmb.  I'm interested to see what the next plan of action is- whether he will try Sprycel again or move to Tasigna.

Also, we have decided to go to the CML summit tomorrow.  We think it will be good to go, not just for the speakers but to possibly meet other people with CML.  And we want to go to IKEA.  Don't have one of those where we live

[ArtTeacher]

Thanks for your reply, John.  He was lowered to an 80 mg dose but his platelets and hemoglobin continued to decrease.  I guess that was the issue, that his counts consistently decreased.  His doctor told him she was looking at trends in his bloodworm and that was the reasoning for switching to Bosulif.  She told us that she chose Bosulif because it was supposed to have less incidence of anemia and issues with platelets.  If only his liver could take it!

[ArtTeacher]

Thank you!  I hadn't thought to contact local LLS for information on a specialist but that is something we will definitely do.  We have decided to go to the CML Summit tomorrow.  I'll report back on how it went!