Hello, I am brand new here so I hope I'm posting the right way. My husband was diagnosed with CML last July at 34 years old. We've had some ups and downs with his treatment so far. He started on a high dose of Sprycel but it was lowered because his platelets and hemoglobin were so low. After his dose was lowered, his PCR test showed levels that deemed him a "failure" according the the drug literature. I'm sure I'm not wording that properly. I also don't like the word failure. I think his PCR was 19% at six months but I'd have to check again to say for sure. Before treatment his PCR was 68%. His hemoglobin and platelets continued to decline. His doctor decided to switch medications to Bosulif, not so much because of his PCR but because she said she was looking at "trends" in his blood work. I guess she was seeing evidence that he was intolerant to Sprycel? Anyway, he has been on Bosulif for about three weeks now and it's been pretty rough. His lab tests actually showed some small improvements last week. His platelets and hemoglobin went up for the first time since he started treatment, so we take that as a good sign. Unfortunately, the past week he has had some serious nausea and diarrhea side effects. He's had diarrhea since he started taking Bosulif, but the nausea is new. It starts a few hours after he takes his pill (with lunch) and he is sick all evening. He has been unable to eat the past two nights. I am extremely worried about him. Does anyone else have any experience with nausea and diarrhea while taking Bosulif? Will it get better with time? Is this just an adjustment period to the new medication? Are there any remedies he can take to ease his stomach issues? He is trying to be tough about it. I know it's because he wants this medication to be the right fix, as do I. But this nausea and diarrhea is extreme. Is there anything I can do for him? Any advice is very much appreciated.
Bosulif Side Effects
Posted 04 March 2014 - 10:14 PM
These are some rough side effects. Bosulif is rather new so few here take it unless they have failed the other drugs. We had high hopes it would have reduced side effects, but that did not materialize.
The diarrhea is expected. The nausea is more rare, and it can be a serious detriment to treatment as it significantly reduces quality of life. Side effects are worst during the first couple months, then they will level out and the patient will then know which will be their continual companions. But the first couple/few months can be tough to get through on a new drug. Encouragement regarding this initial "getting used to the drug" period is important because we all face it to one degree or another. After several months it would be time to look for another drug. I am somewhat surprised the Onc went with Bosulif. It is the drug most like Sprycel. Personally I would have preferred Tasigna in his case. But he should stick with this for at least 3 months if he can make it through.
We each react and respond to the drugs differently. His "failure" on Sprycel could be a couple issues. Some cannot take enough dosage due to frequent breaks required by the low blood counts. Some Oncs will conclude that is failure when the PCR does not get to a certain level by a specific point in time. But often it is the Onc's failure to recognize that many patients would do better over the longer term by taking LESS drug rather than more. When low blood counts cause continuous interruptions, then taking such high doses becomes counter-productive. I don't know if that is his case, but it certainly happens. Otherwise some patients do not do well on a specific drug and must keep trying to find one that works. The "best" drug is often the one that the patient can stick with without breaks, which provides for continual even if slow downward trends in leukemic counts, and also allows a good quality of life. That is true success. Many Oncs would do well to recognize that. Sometimes there are issues that interfere with the drug working properly, such as Kinase mutations. Did the Onc check for any kinase mutations? There is a special test for that which might be a good idea in his case. Some drugs work better than others for such issues.
There is no magic answer. If he can tough it out to see if the side effects subside, and the leukemic counts decline, and the good counts rise, then all will be well over time. If he needs to switch again, and he might, then ask about Tasigna. Each drug has its own unique ways of working, and we each do better or worse on them.
Experiment with which foods help him feel better. Maybe eat way less at one sitting but more often and small amounts during the day. Don't drink too much liquid, even though the docs tell us to do that. It makes diarrhea worse and does not help digestion, so may increase nausea. Again, no magic answers. But if we told you there were magic answers, you would be in the wrong place.
Welcome. Hope all goes better soon. Generally we all find a path that works. Some have a tougher time than others. But the drugs do work for 95% of us.
Posted 05 March 2014 - 12:02 AM
Ah yes, awful side effect of Bosulif. I am going into my 3rd month on Bosulif. Nausea started with first dose. It took me a month to figure out how long it took for it to hit after I took the pill and now that I take it with evening meal or snack between then and bed, I sleep through the worst of it. I think not moving around also helps. I do believe the nausea is getting less and less. At the worst my Onc gave me a nausea med they give to chemo therapy patients. Benadryl sometimes cuts a little of the nausea but then it makes you sleepy. She also said take immodium for diarrhea. I only had that a couple of times. I think keeping a diary of what you eat and how bad the nausea is helps find out if certain foods make it worse. My PCR was 47% a month before I started and I would imagine over 60% in Jan. I have first PCR on Bosutinib first of April and fully expect it to be way down. I also have had regular blood tests every 2 weeks and they have been normal, but then, that has never been a problem for be in the 8 yrs since diagnosis. Only poor response and side effects has made me change.
I agree with Trey, I don't know why his Onc didn't try Tasigna. I had to stop because it gave me diabetes. Also agree with Trey that it takes about 3 months to level out and know what side effects are not going to go away and are they worth sticking with that drug.
So hoping your husband get relief soon.
Posted 05 March 2014 - 09:19 AM
Hi! I also had a similar rocky start with 100mg dasatinb. I am 28, otherwise healthy, so I got diagnosed fairly late. I only went to the doctor when my spleen was already huge, and the first blood test showed wbc about 300k. I guess the leukemia cells had time to displace much of the healthy ones, so when you start the tki counts can go quite low as it takes time for the healthy cells to repopulate. My platelets dipped to 19 in 4 weeks and I had to have a 3 week break. I had 2 more breaks after this, but these were just due to my onc being overly cautious, I could have lived with PLT in the 40-60 range. Long story short, I had the dose lowered to 50mg, and at 9 months had mixed results (FISH 8%, PCR 20%). Instead of switching, we decided to increase dose, now 70mg, soon 100mg I hope, as the low counts have improved significantly over time. I am convinced 100mg will also be perfectly safe now. Really hoping by month 12 this will pay off.
As I don't know the exact numbers it's hard to comment, but often, as Trey said, (and my new onc also thinks along these lines), cytopenias are better managed by slowly building up to maximum tolerated dose instead of frequent interruptions. The official instruction on the 'back of the bottle' for managing cytopenias are overly cautious , probably to avoid lawsuits. Because of this, I can't stress enough the need to find a doctor with extensive experience with tki's.
Anyway, since you have already switched, it may be worth toughing it out to see if the side effect subside.
Is he on full dose of bosutinib now and platelets stable/increasing? Was he in Chronic phase at diagnosis?
Remember it's still early days, and you have 3 other drugs as backup, and I wouldn't rule out returning to sprycel either at some point, at least based on the above. Best wishes!
Posted 05 March 2014 - 03:08 PM
Thanks so much for your response. I agree about needing encouragement right now and we appreciate yours. He did have a test done for the mutation you mentioned, which he did not have. I wondered about switching medications so soon. It seems like the switch happened quick. He never took any breaks from taking Sprycel. Just a lowered dose a couple of months in to treatment. In hindsight, I would have liked for him to stay on Sprycel a little bit longer since his PCR was declining. But that's neither here nor there now. Good to know that an adjustment period is normal. We are hoping that the nausea will get better.
Posted 05 March 2014 - 03:13 PM
Thank you so much Susan! I know he will tough it out, but I worry about him. I like your advice of taking the pill at night so you sleep through some of the nausea. His nausea is definitely related to the timing of when he takes the pill. I was wondering if a Zofran prescription would help. We'll have to ask his doctor about that. Benadryl might be a good fix, too. Especially if he's dealing with the nausea at night. Thanks so much for your input.
Posted 05 March 2014 - 03:23 PM
Hi johnny99! Your diagnosis sounds almost exactly like my husbands. He never went to the doctor- was always really healthy. His enlarged spleen is what tipped him off that something wasn't right. We just had our first baby in April, so we thought his fatigue was just due to having a three month old. Anyway, his wbc was 356k at diagnosis. And he mowed the lawn that same day He is in chronic phase. HIs platelets and rbc dipped super low and then never recovered. His doctor told us she was looking at trends in his blood work and made the decision that Sprycel wasn't the right medication and put him on Bosulif. I think it's been closer to a month now on Bosulif and the nausea started about a week ago with a vengeance. We are really hoping it will calm down with some time. He is on a full dose of bosutinib. His last blood test showed a slight increase in rbc and platelets, which is what the doc was worried about. We'll know more when he has his next lab next week. Anyway, thanks so much for your response. I think talking to his doctor about working up to a higher dose of whatever medication he is taking is worth talking about. Especially since he didn't have hardly any side effects on Sprycel.
Posted 05 March 2014 - 03:23 PM
Was there any reason why he was put on Tasigna or Gleevac first?
Posted 05 March 2014 - 03:46 PM
Mariebow, no reason that I know of. I actually have the same question after doing a little research. I wonder why he didn't start off on Gleevec since it seems most people do.
Posted 05 March 2014 - 04:56 PM
I don't know where you live, small urban, large urban, rural, etc. but one thing I've learned over the 5 years I've been diagnosed is that CML is a fairly rare cancer and not all doctors, including many hemotology oncologists, have much experience treating it. Have you already had, or have you considered a second opinion from an experienced CML doc? 6 months is an awfully short time to determine a drug is not working, especially since he had a hard time staying on it and especially since this is not a disease that requires immediate decisions 95% of the time.
Quality of life is very important, especially since your husband is so young! You said he started on a "high dose" of Sprycel. Normal starting dose is 100mg/day. If you are diagnosed in a later phase they might start someone at 140mg. but that wouldn't apply in your husband's case. So I was wondering how high was his starting dose?
The more you can learn about CML, its treatment, responses, etc. and help your husband learn the better off you will be and the more you will be able to participate in the health care decisions.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 05 March 2014 - 07:34 PM
I think Gleevec soon will be become Generic and is probably the cheaper of all the drugs. Don't know if that has anything to do with his doctor's dicisions. I believe Bosuif came out in Sept 2012. So it is fairly new and probably very expensive drug, fresh out of the gate. The drug salepeople probably like to push the newer drugs on the oncologist, to get more patients, for more data, and they are probably more expensive. I really wouldn't like going on the newer drugs, until they have been out a few years, unless there is a good reason. It's been awhile since I looked up Bosulif, but I think it was stuidied on 547 patients for different lenghts of time and not sure how many of them were just CML patients. Anyhow you might want to read up on Bosulif.
I have been on Gleevec since 2005. Tried Sprycel put didn't like the side effects, so went back to Gleevec at a lower dose.
Posted 17 March 2014 - 11:02 AM
After Gleevec stopped working (BCR/ABL rising) after about seven years on that TKI, and after two short, but failed attempts at using Sprycel and Tasigna, I started using Bosulif in December. At first, I was on a full 500 mg tablet dose per day. But, a side effect not talked about here - pustules developing on my head, ears and face - forced me to cut back on my dose. I am now taking 300 mg per day (3 100 mg tablets taken at same time in evening with dinner), and while that unpleasant side effect has been somewhat reduced, it still results in some unwanted pustules. Right now, I have one on my top lip and a couple on my face. These things don't go away in a few days, either. They linger (I had two removed from my forehead by the dermatologist). Anyway, I can deal with the occasional diarrhea, which I still have, but it is more infrequent over time. However, these pustules are really an unwanted side effect for me. Neither the oncologist nor the dermatologist has any recommendations on treatment of these pustules either (other than surgically removing them, but I can't have that done again and again - they do leave scars). Anyway, thanks for listening.
Posted 17 March 2014 - 02:51 PM
Wayne, Just out of curiosity, how much did your bcr/abl rise on Gleevec before you switched? Regards, Frank
Posted 18 March 2014 - 09:09 PM
I'm sorry to hear about your skin side effects, Wayne. I don't know if there is any connection but my husband was having terrible skin problems right before he was diagnosed. He had gone to see three or four different dermatologists to try and figure out what was going on. Some said psoriasis, some said eczema. He would get blisters on his hands and feet that would eventually crack and ooze. It was pretty nasty stuff. Right before his diagnosis, his skin problems started spreading to his elbows and knees. I remember seeing him one night with a rash everywhere and the severe issues with his hands and feet and thinking something wasn't right. Hindsight! Anyway, after he started initial treatment with hydrea (before his exact diagnosis) the rash went away. We think there has to be some connection although it's just a guess. I think we were told it could have had something to do with his body being clogged up with all the cancer cells (liver, spleen). Like I said, we don't know if there was a connection but it's hard not to look at everything that was going on before diagnosis and draw conclusions. I hope you find some relief. My husband is still having bouts of crazy nausea and diarrhea although he does have an occasional day without where he is okay. That's promising. Here's to hoping everything settles down for both of you
Posted 18 March 2014 - 09:21 PM
Hi Pat! Thanks for you response. I have been thinking about a second opinion here lately. We live in a small urban area. We both think very highly of the doctor my husband is currently seeing but with something as serious as cml, I know that a second opinion couldn't hurt. But I'm not sure where to go for a second opinion. There is one other cancer clinic in town. The oncologist he sees now has six or so patients with cml that she is treating. This may sound naive, but is that considered having experience treating cml? I'm asking because I really don't know. My husband started on a 100mg dose of Sprycel but it was lowered to 80mg because of anemia and low platelets. Then at his six month pcr test he was switched to Bosulif. That was about a month and a half ago.
Posted 01 May 2014 - 04:45 PM
I thought I'd add an update here in case anyone is googling for info on Bosulif. The nausea and diarrhea got so bad a few weeks after I originally posted that my husband returned to the doctor and was put on Bentyl. From what I understand, it is a medication for IBS. The nausea/diarrhea stopped right away and he was feeling really good for a couple of weeks. We thought that was the fix! Then, the nausea returned. And then the diarrhea, too. He was really sick a couple of weeks ago. He felt terrible and looked really sick, too. It was the first time I've seen him look bad since all of this started last July. Not like himself. He had some bloodwork done to make sure it wasn't anemia that was making him feel so bad and found out his liver enzymes were elevated (one was 909, one was 249 but I can't remember which was which- bilirubin was normal). He was told to stop taking his medication (this was last Tuesday) and come in a week later for more bloodwork. We just went back to the doctor this afternoon but are waiting to hear what his liver enzymes are from labs today. If his liver recovers in under four weeks, doctor says he will start back on Bosulif on 400 mg dose. If his liver doesn't recover that fast, well... I don't know what will happen. I am hoping we will catch a break soon and get some good news for once.
Posted 01 May 2014 - 08:37 PM
If it were me, I would switch to Tasigna. Those Bosulif side effects are just too debilitating. Bosulif is such a disappointment. The drug maker had an opportunity to make a low side effects CML drug which was greatly needed but instead decided to make a drug that might potentially work for multiple cancers (long list of cellular process inhibitions) and screwed it all up. My personal opinion is that Bosulif should only be a last resort drug.
Posted 02 May 2014 - 06:00 PM
AT, so sorry that your husband is having such a difficult time on Bosulif. The liver issues are one of the side effects that need monitoring. I've been on Bosulif since it was approved in November of 2012. It was my last resort TKI, mainly due to cytopenias, like your husbands. It proved to be gentler on my counts than any of the other TKI's, although I've not tried Ponotinib, which my doctor believes would be harder on my counts. I've never experienced the nausea, but do have the diarrhea, that I can control by what I eat.
The advice to start on lower dosages and gradually increase them is very sound advice in my experience. In the beginning my Dr always started me on the TKI at full dosage and then when I kept having low count issues, we learned that lower dosage and then build up was the best. As Trey says, the "best" drug is often the one that the patient can stick with without breaks, which provides for continual even if slow downward trends in leukemic counts, and also allows a good quality of life. If being able to stick with a drug means at a lower dose, then that's better than the alternatives. I started on 400 mg of Bosulif, ended up going down to 200, but now I'm back to 400. Quality of life is better and my numbers are stable. Also, I take my dosage at dinner time. That's proved to work best for me.
Hope your husband does well soon! And Tasigna was a good TKI for me as well, as far as side effects, until my counts wouldn't tolerate any dosage.
Wayne - So sorry about the skin issues! Just recently, I've developed some very itchy patches ... hoping it's all dry weather related and not the Bosulif. Time will tell. Good luck to you and I hope they go away for you!
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
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