Hi all, I am new to all of this and more than a little freaked out. My 29 year old daughter was recently diagnosed with CML after being rushed to the hospital a couple of months ago. After she was released she started on 100 mg of Sprycel. We heard and good things and were thrilled when her numbers began to drop.....but then they didn't stop dropping. Her platletes dropped hard and fast, whereas her white count dropped also her platletes went dangerously low. Sprycel was stopped but everything continued to go lower. Finally it stopped and her platletes started to rise. She went almost a month medication free and now we are trying Sprycel at 80 mg, after a week her platletes have begun to nosedive again, her white count which was good is now rising. We had such high hopes for this medication.
Has this happened to anyone else? What was the outcome? I would appreciate any advice, trying to be positive but honestly scared to death.
Try not too worry too much at this point, what your daughter is going through is quite common, particularly with Sprycel. Sprycel is a very powerful drug that is very good at what it was designed to do. For people who just start out sometimes this can be overwhelming to the system. I'm sure others like Trey and Scuba will weigh in, Scuba has gone through the same thing and can share a lot of information with you about this. Tedsey is another individual on the board I can think of who had this issue.
To put it in perspective try to picture it this way. When your daughter was diagnosed her blood was overrun by leukemia cells. With CML we have an abnormal chromosome that causes our body to keep producing white blood cells. As the blood gets over populated with these white blood cells, the body tries to compensate by dialing back the production of normal healthy cells. This is done to try and maintain some kind of balance in the blood. When you introduce a drug like Sprycel into the mix, it is like dropping a bomb that wipes out the leukemia cells. Now think about the fact I said that a large percentage of the blood had been dominated by leaukemia cells. By wiping them out the counts naturally drop. Now the body has to recognize this and begin to ramp up production of healthy blood cells to compensate and try to get back in balance again. This can take a while, for some people it takes a long while and for some people they go on to live with CML with low counts - a side effect known as myelosuppression.
For many myelosuppression is temporary and eventually the counts recover. Even for those who live with low counts, it makes the journey a bit tougher but it does not really change the long term prognosis, which is still pretty good.
Managing myelosuppression can be done various ways and it depends on your doctor. If your daughter is having this issue it would be good to consult with a CML specialist at a major cancer center if possible. Most oncologists treat CML from a check list, you really need someone who knows about this disease and has experience dealing with this issue. Some approaches call for stopping the drug for a while then restarting at a lower dosage, people do this on again off again sometimes for a while. Some people restart Sprycel on as little as 20mg per day and try to work back up. Switching drugs is an option. Gleevec may not be as hard on the counts. Another option is stim shots that help the body produce more healthy cells.
It stinks when someone has this trouble but as I said for most it is temporary. Know that it is fairly common and in the majority of cases it does not affect a successful long term prognosis.
Best of luck
I'm newly diagnosed (7 mos) and was also started on 100mg of Sprycel once my counts were brought back down to earth with Hydroxurea (sp?). My first month or so was shaky with Sprycel as my counts dropped a lot. My doc ordered a five day break from meds and once I resumed everything smoothed out and has been pretty smooth since. Each case is different and drugs affect each of us in different ways. All of Lucky's advice was very valid.
Wishing your family well....
Sounds like what many of us experienced. You did not say how much her WBC has risen lately, but you want it to come back up a bit. Also, being off the drug for a month you would certainly expect the WBC to rise, which was the reason for stopping anyhow. I don't see anything unusual about your daughter's experience with Sprycel so far from the little you have said. She should adjust to it and do well as most people do.
Thank you all for responding, this is quite a scary thing when you are so unsure of everything. I have been doing research but again when you not sure of what your reading it can be tough. I am so happy that your have responded to me. My daughters doctor did take her off the Sprycel again and now we are waiting 2 weeks for her to do another CBC and switch her to something called Tasigna (I think thats how it sounds). I was very surprised that her doctor refuses to go under 80 mg with the Sprycel when I have seen others on her taking a lower dose. I almost feel like he is not giving it enough time. She did get a minor rash and she said she felt her hair was falling out a bit, but still it just seemed that he was quick to switch the medications. He actually wanted to switch it right away after she had the first problem with it but she insisted on trying it again.
Again, I so appreicate your responses, I can tell how much it helps to be able to go somewhere and ask questions from those invloved in this illness. I think we are all just simply freaking out in our family. Its gonna take some time to get used to but we will support her 100% with whatever she has to do. I hope to someday have enough knowledge to pass along information like you guys did for me, until then I guess I can give support where it is needed on this site.
I wish you all well.
He probably isn't giving Sprycel enough time, but I am not completely surprised he doesn't want to go much lower. Some doctors are not into lower dosage, others are more willing to experiment with it. You have to keep in mind these are pretty new drugs and they are still trying to figure everything out.
Tasigna is a very good drug and she will likely do well with it, although I would not be surprised if she has a similar issue, so be prepared for that and don't feel defeated, this can be worked through and the one good thing about CML is that if you are in chronic phase, there is no immediate danger like there would be with an acute leukemia where everyone drops everything. There is some wiggle room with CML to tweak the treatment and get it right. Going to Tasigna is not a particularly bad decision, although the argument could be made to keep working with Sprycel. Determine if you trust the doctor and if he has sufficient experience treating CML, especially people with low counts. You may ask something like "how many of your other CML patients had this problem, how did you handle it and what was the outcome". You should be able to tell from his response if he knows what he is talking about or just winging it. If you think he is winging it then don't be afraid to seek out another opinion.
Trey - to your point, "work back up to higher dosage after a while" ... that's exactly what I wanted to do when it was found that 20mg. was working for me and keeping me from getting severe myelosuppression. But when I asked Dr. Cortes to increase my dose, he was wary. He said that if my response rate holds (or even improves), then he is more concerned with toxicity at higher doses. Sprycel does have some issues with what it does to bone cells and other cells. It is one of the reasons I still have a fondness for Gleevec. Gleevec has over a dozen years with you, Susan and others that long term use does not seem to be a problem. Sprycel is still pretty new without the 10 years plus available.
Mid 2009 Sprycel (aka Dasatinib) was approved. It had over 2 years of Phase 3 clinic data prior to approval:
Gleevec has a good 10 years of data on Sprycel.
Regarding the bones - there is some data emerging that Sprycel (and other TKI's to a lesser degree) can cause Mesenchymal stem cells (Osteocytes are progenitors) to differentiate into fat. Data is preliminary and appears dose dependent. Also the study was done in-vitro meaning in petri dish. Inside the body who knows what's going on.
Many drugs have unintended consequences. In the case above, it probably takes a very long time for the effect to manifest vs. not taking the TKI and leaving the planet in a couple of years. That is why I follow carefully the TKI cessation studies as well follow people on this forum who have stopped taking a TKI. I do believe there will be a new solution to CML that won't require a daily drug for the rest of our lives. But it is useful to be mindful of the on-going trials for the current crop of TKI's even though they are approved.
regarding your comment “that is why i follow carefully the TKI cessation”
When I went to a CML Specialist, for a second opinion; he said some patients choose to go off TKI for about a year, and most of them go back on something.” I should have asked him why, but in my mind it was pretty clear, that they were looking to see how long they could go off, or where they could plateau and avoid some of the long term side effect or give their body a rest.
I have stayed pretty stable but not enough to venture off Gleevec, that is my hope to either be able to stop the drugs completely, or for a long period of time, or to downgrade to 200 mg.
All drugs/med’s are chemicals and have; short, medium, long term side effects, that is my humble opinion. It’s just a matter of which is the lesser risk, lot of trial and error here. Also I am always mindful of the quality of life as I get older, currently 64 years. I see some cancer patients that are elderly and go thru horrible chemo and suffer terribly, only to shortly die, and knowing the risk were a low chance of recovery, and they still hoped against the odds. I guess nobody want to really die. But either way I am going to see Jesus so I am a winner either way. Again all the above is only my humble opinion.
The onc also said he does not go by guidelines as some onc prefer to adhere strictly to the guideline, like my previous onc (his words). I would venture to guess that if an onc is a CML specialist they would go case by case. The onc did say I was the opposite of most of his patients. He said most want the latest drug out, where I prefer to stay on G.
I keep saying to myself newer doesn’t mean better. After these drugs are only in short trials now, which is understandable, or I wouldn’t have G and who knows how long I will or won’t be on G.
My former onc kept saying we have better drugs then G, and it would be a piece of cake. I am sure glad I went to the LLS post as it clearly is not a piece of cake!!
I should have politely asked her how many of her patients are on the newer TKI’s, and that would have clearly answered my question. I am pretty sure I already know the answer to that one! Not saying she isn’t a good onc for other cancers as she clearly has a lot of patients, I don’t know how she can possibly keep up with all of them, she is the only onc/doc in her practice.
Hi Pam - I completely agree ... newer is not necessarily better.
In my case, I failed Gleevec - or I should say that the dose could not get high enough to have the desired affect without myelosuppression setting in. My dose was lowered to 300mg (Gleevec) and turned out to be useless. My primary Oncologist wanted me to take Neupogen and keep stimulating the bone marrow while I went to a higher dose. It was at that point I sought out Dr. Cortes for a second opinion. Off Gleevec - onto either Sprycel or Tasigna - no stim shots. I made the choice of Sprycel. If Gleevec had worked - who knows?
I am glad that Dr. Cortes experimented with Sprycel and I ended up on one fifth the required dose and still get a deep response (MMR). So I am grateful.
But as you noted - we don't quite know yet what the "other" effects are likely to be of these newer drugs until many years go by.
It is for that reason mostly - that I intend to get off this drug once I can maintain PCRu for a year or so. I may never get to PCRu - which is why I am quite interested in trials where patients are going off their TKI even though they are still detectable (PCR). It's postulated that some of these patients may be able to stay off their TKI and maintain stable PCR levels (no increase).
Scuba, thank for the info.
I have wondered if G doesn’t work anymore what would TKI I would take. The prev onc said Tasigna, but the new onc, (only went to him once) had briefly stated that Sprycel was a completely different drug/chemicals.
I read such horrible things about Sprycel, huge fluid problems. Not that Tasigna is with out side effects, but I think Sprycel scare more.
You take a low dose. Seems like a lot of the newer patients are on high doses and are suffering terribly.
Pam wrote, "Seems like a lot of the newer patients are on high doses and are suffering terribly"
This is why I suggested new patients get an opinion from an expert in the field if they haven't done so. Expert researchers are more willing to "customize" treatment plans based on the unique profile of the patient. Dr. Cortes dropped my dose like a rock from 70mg initially to 20 in one week - no stopping in between stepping down gradually even though I asked him.
If someone is suffering terribly - they should consider working with their doctor to lower their dose and monitor results. It may not work - but is suffering worth it to not try?
Hi Pam South,
You wrote that you think Sprycel scares you more than Tasigna. I have to tell you, I am on 50mg Sprycel and am able to manage the side effects with just 5mg prednisone per day. I am not sure if Sprycel is getting the job done yet, I will get my PCR results next time I see my onc. which is in two weeks. If it is working at 50mg, than for me, Sprycel is the best drug. It truly is an individual thing. I could not manage the side effects at all on Gleevec 300mg and Tasigna 600 mg was just awful for me. If you ever need to change meds please don't rule anything out.
Thanks for the links, I skimmed them tonight but will read them more thoroughly tomorrow. I do think in years from now researchers will be finding that people who took TKIs will be developing problems from these meds. At present we do need to take them, though. It is what it is.
Pin, Happy Belated Birthday!!! We should have celebrated together.
Hi Patty, I'm Pin and I was diagnosed at the same age as your daughter (I just turned 30 last week - hard to believe really!). It is scary, but it can and does get better with time. I think they just need to work out the right medication for her and at the right dosage. Please say hi to your daughter for us, and let her know that she can come on here anytime to say hi or anything - it really is a great place to get support and advice :) Cheers, Pin xxx.
Hi Patty - I went through your daughters current experience almost exactly.
I was started on 70mg Sprycel and my counts dropped to extremely low - Neutrophils mostly (to danger levels) and then I was taken off medication for 3 months until my counts recovered. I was then re-started at 20mg. Sprycel. I wasn't lowered gradually. My dose was lowered all at once in order to find where the myelosuppression kicked in. After 20mg. for a week or so, my counts fell somewhat, but leveled off still in the safe zone. I wanted to have my dose increased from 20mg. to 40mg., but Dr. Cortes wanted to first wait and see what my FISH/PCR response became. I stayed at 20mg. for three months and then was tested for FISH/PCR. It was found that my bone marrow FISH went to zero (that's good) and my PCR dropped a few logs (also good). Since then my counts have recovered more to near normal and I am still on 20mg Sprycel some 10 months later. My CML levels have also dropped during this time and I am officially at MMR (major molecular recovery) which they tell me is a good prognosis. I no longer have weekly blood counts taken and now only have them checked when I have a PCR done (every 3 months).
I am of two minds regarding the cell counts dropping as in your daughters case. What it may mean (and this is according to Dr. Cortes at M.D. Anderson) - is that your daughters blood system is very sensitive to Sprycel. That may be a good thing. It may mean that the CML is getting hit harder than what is normal for the drug to do and causing the big "gap" in her blood with low cells. It takes time for her normal system to get going (see Trey's blog on this topic). Because of this, she may not need high dose Sprycel to get deep response. I'm living proof that low dose can work to get a patient to MMR (or even better). The good news is that with lower dose comes less side affects. I have none that I can feel. So I like 20mg. 20mg is my friend.
My second thinking on cell counts dropping is that the Sprycel affects the normal cell lines also (C-kit pathway) higher up the hematopoiesis chain. Many more cells are knocked out before the body activates alternate pathways. It is a matter of getting the dose right for each patient. More is not necessarily better. You want the correct dose. And unfortunately - the Oncologists have to experiment in order to get it correct. But I have confidence that your daughter will come through just fine. It's unnerving at first, but gets better. Within a year, it is quite possible you will find the right dose, have achieved MMR (or better) and your daughters blood is largely free of CML
Hope this is useful
I too experienced difficulty with my blood counts while on Sprycel. Onc. had me on and off several times, once for about 30 days. Finally I "pushed through" and my counts leveled off. I eventually developed the t315i mutation and failed on Sprycel. Unclear if the trouble early on with maintaining my blood counts was an indicator of the mutation down the road.
I'm just now at my 1st year anniversary of the trial drug Ponatinib from Ariad and I'm responding fairly well although the side effects are much more dramatic than I've experienced on Gleevec or Sprycel.
My thoughts are with you as you struggle to support your daughter. I truly believe it would be more painful for me to watch my son battle CML than its been for me to do so. Try and help your daughter maintain a positive outlook, this has been my most difficult issue. I'm barely hanging on emotionally & mentally even though I'm "responding" to my trial drug.
Time is your most precious gift to your daughter, spend as much time with her as you possibly can.
Good Luck, Wally
Thank you so much for your responses, the information I get from all of you who are actually dealing with this illness and the medications and side effects is priceless. It has given me the inspiration to research even further and I have spoken with my daughter and told her about all your responses and information. She is going to come over on Sunday ( we are going to look at a wedding venue as she just became engaged on valentines day) and read all your emails. We are seriously discussing getting a second opinion and even the possibility of changing doctors. She had received a call from the pharmacist about her change to Tasigna and found the pharmacist surprised that my daughters doctor had not told her about her need for a EKG and to have her eloctrolytes checked. We discussed her last appointment and both of us remember her doctor saying he had never seen the issues she is having so now we are really wondering how many CML patients he has and what his experience with this illness is.....trust me a question I am going to ask on our next appt 3/12. I also am going to ask him to clarify a comment he made that after we left we discussed had confused us both and that was the result of her bone marrow biopsy show the Sprycel was not attacking the CML cells, yet her numbers were decent then but continued to drop, it is very confusing as I guess is should be when one is just beginning to deal with this. That's why I so appreciate this site and all of you, it gives me not only more information but more hope and also the inspiration to push the envelope and not settle for what the doctor says but to push for answers and ask the important questions and to know that if changes have to be made, you make them.
Thank you again, I hope you are all doing well and feeling well and that today and everyday is a good one for you. Please keep in touch.
I don't see the rationale for switching to Tasigna instead of lowering the Sprycel dosage. The Onc is not allowing enough time to adjust to the Sprycel, which can take time. Is the Onc going to have her take full prescription Tasigna? The result could easily be the same low blood counts. Some people just need less drug than others.
Also, she should get copies of every lab test result, and we can help her understand them.
I've been on Gleevec for 9 months (liver toxicity) and Sprycel for 2 1/2 years. In my opinion you are wise to be thinking of another physician. That is not to say that the doctor your daughter has now is not a good one, but he does not sound like he has much experience with or knowledge of CML and the TKI drugs used to treat it. Most doctors don't, this is a relatively rare leukemia.
It is helpful to remember that low counts are generally just a side effect of the drug. It doesn't indicate one way or another if the drug is actually doing it's job. That is information you get from the results of PCR or FISH tests. For most of us that doesn't happen over night so we have to find physicians who are comfortable managing the side effects while giving the drug time to do its job. I don't think your daughter has found that physician yet. If you read some of the other posts from new members you can see that some of them, whether they know it or not, are dealing with the same thing.
What your daughter is experiencing is very common to most of us. I did not have real low counts on Sprycel for some reason, but I did with Gleevec so I know what she is going through. It took 3 years, but my counts are all in the normal range now. The difference is that I have a doctor with lots of experience with CML patients and he didn't panic when these things happened but allowed the drugs the time they needed to do their job and managed the side effects, for me, with short term cessation.
It sounds like you have a handle on the issues and will be a great advocate for your daughter!
Congratulations to your daughter on her engagement, and congrats to you too. My husband & I were engaged a month after dx and I think you know for sure that he's a keeper when he chooses to marry into CML.
My doc is experienced with CML but isn't a CML expert. She openly sources advice from experts and I'm seeing one of these next week - he will act as a consultant on my case. So if I was you I wouldn't be at all shy about getting a second opinion from an expert even if you only see that expert a couple of times. Quite a few people on this board travel long distances to see an expert as required but then go back to their local onc for regular care. Of course this all requires that the local onc doesn't have an over sized ego.
Enjoy wedding planning!
Good morning everyone,
I hope your weekends went well and everyone is doing ok. I spent some time this weekend with Jordyn and she read over all your emails and was so appreciative of the advice and information. We had a talk and have decided to seek a second opinion/or new doctor to work with her dealing with her CML. She has been discouraged with the fact that her present doctor is intent on changing her medications so quickly without really giving Sprycel a chance. She was on it for only a month and then off and then a week and a half and he is done with it. We have contacted the Smilow Cancer Center at Yale New Haven Hospital, which is the biggest hospital I think in Connecticut and are waiting for a call back so she can arrange to meet with the doctor they feel has the best experience with CML. We are keeping our fingers crossed ! We are also considering traveling to NY or Boston where I think I may have found a couple of CML specialist and seeing if we can find a CML specialist to consult with a doctor here in CT. Also we talked about our conversations we've had during appointments with her present doctor and some of the comments he's made do not match things we've read or things you guys have advised. We are starting to think Call Me Lucky is right and he is winging it. I think he is a very good doctor and great manner but we now are starting to think his experience with CML is limited. We see him next Monday and are going to tell him she does not yet want to start the Tasigna and that we first would like a second opinion. Its a awkward thing to do but I feel her health and treatment come first and we need the best possible person to work with her.
I hope everyone had a good day/week ahead.
I live in CT and I travel to NYC to Memorial Sloan Kettering. They have a few CML specialists there, including Dr. Berman who I see. She is conservative but she knows her stuff. She's been working with CML for 30 years and she is a co-author for the NCCN guidelines for treating CML. I know some others on this board who also see Dr. Berman and would recommend her or any of the doctors at MSKCC. I initially saw her for a second opinion and then decided to be transfer to MSKCC for treatment, but she was willing to consult if I wanted to stay with my original doctor. At first it was a pain to go to Sloan but once things settle down it's not a big deal to head into the city once every three months.
You should not feel uncomfortable about asking for another opinion. This is a rare disease and many doctors do not have that much experience with it if they are not working at a major cancer center. Your doctor should not have a problem with this - my original onc told me I was going to go for a second opinion before I even got a chance to ask. If your onc does have a problem with it, then that is just another red flag that maybe this isn't the right doctor. It would be bad enough if he doesn't have enough experience but to have too much of an ego to recognize it, would be dangerous. Remember it is your daughter's life, not his....
Best of luck.
My close relative was diagnosed with CML in July 2012. She was prescribed Gleevec and had her blood tests done every week. After few weeks she was told she had excellent results and blood test was not needed for another month (until September). During this month, she started experiencing various symptoms such as swollen nodes, fever, etc. She also suspects that she caught cold/infection from air conditioning which made things a lot worse. She told doctor about these symptoms but doctor said that despite these symptoms she did not need to have another blood test until September (as agreed previously). She went for a blood test two days ago and was told that her CML has progressed to blast phase, but the doctors said it would hopefully be possible to go back to chronic phase after having other treatment (Chemo) additional to Gleevec. We are very desperate and I would be extremely grateful if anyone who has had similar experience or knows anyone with similar experience could share information with us about treatment/prognosis in a similar situation. We suspect that blast has only started a few days ago so we are desperately hoping that this can go back to chronic phase with a view of further treatment to fight to achieve remission. PLEASE HELP. Thank you very very much. Sharingg