I'd been on Sprycel for about 3 months and having palpitations when I decided to see my cardiologist to figure out if it was anxiety (been having a lot of it lately) or something else. My cardiologist told me that the palpitations were probably the result of the medication but wanted me to wear a holter and have an echo. Wellll - as an 'incidental finding' to the echo - he found PAH. Told me it wasn't HIGH high - borderline high - but to tell my Oncologist. I did, he stopped the Sprycel and the PAH resolved. As a result they have reduced my dose to 80mg (Im on a study). My question is - is Sprycel the type of medication that no matter the dose, once you take it the PAH will return or can the PAH be dose dependant? Im kind of worried about this because while I was told it was borderline high - I dont want to tax my heart/lungs TOO bad. I've only got one!
Side affects associated with Sprycel, such as PAH (& Pleural Effusion) can be dose dependent. But usually the dose has to be greatly reduced for the side affect to disappear. In your case, you are experimenting with a 20% reduction to see if the PAH stays resolved. That is not that much of a drop. If PAH returns, I would not give up on Sprycel - just lower the dose again (from 80 to 60 or to 40) after a drug break to test the threshold.
The good news is that Sprycel can be very effective at doses as low as 20mg. In your case, you may just need a little tweaking to find the right balance. What is your PCR/FISH level currently? There is a good chance that the reduced dose of Sprycel will work for you.
I take 20mg. Sprycel. I have no side affects (that I can feel). And I was brought into MMR at this dose (3 log drop in PCR). I did have a repeat PCR taken just a few days ago, however when my last PCR level showed an uptick well within the margin of error for the test. The re-test is to check to see if I have an upward trend developing or if it was an anomaly. M.D. Anderson has me on some sort of watch list given my low dose.
Low dose Sprycel is proving to be very effective at managing CML and at the same time minimizing side affects. Hopefully your PAH is dose dependent and the lower dose will work.
Yeah. I was worried about that 20% reduction But like I said - Im on a study (at M.D. Anderson) and I remember someone else commenting awhile ago that they dont go below 80mg while you are on it. I guess that's what it means to be on a study - maybe they are going to watch and see at what dose (if any) the PAH stops. I restart my 80mg this weekend and I have another appt in August so it's not too long back on before we find out if/how high the PAH returns. Im supposed to see Pulmonary while I'm there.
My PCR in May was less than 0.01 and that was being on 100mg of Sprycel for 3 months. I would LOVE to be on the dose you are - but dont know how to go about that since I'm on the study (with Dr Cortes btw )
Thank you for the reply!!
Jean - So Dr. Cortes is your Oncologist also. He has you on 80mg. and he put me on 20mg. He didn't hesitate. He went straight from 70mg. to 20mg in my case. He is championing lower dose Sprycel when side affects are an issue. Mine was myelosuppression.
My PCR is an order of magnitude higher than yours (0.1). I suspect that is due in part to the lower dose I am on. Dr. Cortes is testing if I can get to CMR on this dose even though it takes longer. There was a time when they were more concerned about how long the drop in PCR takes (to reach key PCR milestones), but he told me that trend is more important. As long as you keep dropping and can reach MMR (with zero FISH), that is what he wants to see. Also - and this is important - he mentioned that once at MMR, if you stay there and don't change, that is still o.k. There is a high degree of correlation between MMR and no CML progression.
Personally - I want to achieve CMR and would be willing to increase my dose to get there. I have a suspicion, however, that I will be on this drug for a very long time if not for a lifetime.
(note: I do take Curcumin and that may or may not have an augmenting effect on the low dose Sprycel (i.e. makes lower dose more effective). We just don't know until they do scientific studies specific to CML.)
Thanks Pat - I've been traveling of late - getting ready to head out again in a few days and meant to check-in.
I do keep up with the happening's here when I can. I've enjoyed Trey's just "go away" lines to the interlopers. And I did get a kick out of the Spam that has been showing up. I noted Gary's ("Lucky") return to PCRU - I envy him. I have a few more log's to go to get there (if ever).
But mostly - I have been waiting for the six weeks to go by since my last significant post here and the re-test following my somewhat surprising uptick in PCR (within margin of error, but still a bummer for me to have happen). So now the countdown begins since I had my PCR sample taken last Tuesday. Some time next week I will know the results and I'll post them here. I have increased my dose of Curcumin during these last six weeks. I do admit to positive side benefits with Curcumin that I can recommend. But my main goal is to get to PCRU so I can do the experiment I want (i.e. go off Sprycel and see if I can stay off). I know many of you are interested in me trying that. But I can't do it unless and until I get six months of straight PCRU. Dr. Cortes is willing to have me try that as well (including the Curcumin).
I do want to be an inspiration to those who are suffering side affects at Sprycel levels greater than 70mg. There is hope that low dose Sprycel can be as effective (although take a bit longer) at getting you to MMR or even CMR and help you avoid side affects. If I can, in fact, get to PCRU (CMR) - that will be a major accomplishment to have done so on only 20mg. Sprycel. I have zero side affects with 20mg. Sprycel. None. So apart from the fact I take this white little pill every night - I don't feel like a Leukemia patient.
In the mean time, I feel great - sample new Cabernet's whenever I can and have discovered a nice Macondo that I may enjoy more often. I still chase my wife and thank God I still can do what I know how to do when I catch her. At least I can still catch her.
I will keep you posted.
Hey Scuba: I was thinking about you also, and was going to post to see if anyone has heard from you. Then I saw you posting, and others had the same concern and thoughts about you.
So glad your still doing so well, and it does sound like your enjoying life which is what we are supposed to do.
Keep us updated when you have time.
It's great hearing from you, and I'm so glad you're doing so well. Since you have been studying Sprycel so much maybe you can answer a question for me. I started on S 18 months ago, 100mg a day. My onc kept telling me my rbc count was going down every month, I think he was getting concerned but decided to wait a couple months. That was probably last summer. In August he called me and said my iron level was too low it was 3 and it was supposed to be 20 so he ordered iron infusions for me 1x a week for 5 weeks. After my 4th infusion I had an allergic reaction to the venofar ( the infusion stuff) so he stopped the infusions but my iron level and rbc did go up to a safe range, and he had me take 100mg S one day and 50mg the next alternating. But after that reaction I developed a high blood pressure problem. So the infusions jump started my iron level, but I had to go on bp medicine, which knocked me on my arse. I'm on my 4th bp med now and it also makes me so tired,and my bp is still higher than it should be. I'm dodging my pcp right now. God why can't I make a long story short? Anyway in March I asked my onc about going down to 50mg of S a day,he said wait a month and have the full bw panel done genetic phil chrom, etc. I waited a month, got the bw done, and got a call to stay on my same dose and have the same bw done again in another month. So a month ago I saw oncs asst. she said my iron level was down to 8 again and I needed to take iron pills (3 x a day) that's almost a toxic amount. I'm taking 2 a day right now but I don't plan on taking them much longer, they make me so sick. But my onc did reduce my S to 50mg a day so I'm really happy about that.
Have you read anything about Sprycel, anemia, low iron, and high blood pressure? I've always been slightly anemic but not bad, I always had perfect, or low bp. Do you think my reduced dose could help with all these problems? Are they Sprycel related? I have a vascular disease, and I have to take plavix,lipitor,& aspirin daily, and I also have to take 80 mg of protonix a day for barets dis.That's a lifetime deal, I'm tired of pills and I'm tired of being so tired. In your opinion or anybody elses, do you think the Sprycel reduction will help, and I can stop iron pills, and bp medicine? Thank You Billie
Hi Billie -
I absolutely believe the Sprycel reduction will help. Sprycel can induce arterial hypertension. It is the body's natural reaction to the drug. It is what causes Pleural effusion, headaches, PAH and related "pressure" problems. If you think about what the body is doing in reaction to the drug - the induced high pressure leads the body to want to get rid of the fluid to drop pressure. How do we get rid of fluid? - your kidneys, lungs, skin. Even when I take my 20mg. Sprycel, I can measure a blood pressure increase. If I have wine with the Sprycel, the pressure increase is really pronounced (about an hour afterwards). It fades fairly quickly also - but it is noticeable. When I exercise - especially aerobically - I don't get the pressure increase (somthing for you to consider). Also - I take Curcumin and fish oil (Omega 3). Both are very good at helping fight high blood pressure. Curcumin is a Cox-2 inhibitor just like aspirin. It works in a similar way to help reduce inflammation (the major source of high arterial pressure).
By reducing Sprycel, you reduce the affect and likely help in the Pressure area. If you have naturally high blood pressure due to lifestyle, then you have to do other things to help reduce it. The doctors want to give you drugs, I believe in lots of water (counter intuitive, but it works to reduce salt) and exercise.
On the red blood counts and anemia. I too have low blood counts since taking sprycel. I am borderline normal on the low end and that is the main reason Dr. Cortes has me at 20mg. Lowering your Sprycel dose to 50 mg. should help your red blood counts. Now...I am not a doctor, so what I say next should be considered with that in mind: I personally do not like taking drugs- period. Food is where nutrition can best be found. So if you have low Iron - why not try and indulge with high iron foods? The best source of iron is beef. Eating more meat (especially high grade lean meat) will definitely help your iron levels. Alternately you can eat a lot more beans - also a high source of iron. Do you eat meat 3 times or more a week?
Remember the old western movies - a bunch of strong guys hanging out around the fire eating what? They were always eating beans and meat. And these guys were tough, strong and had lots of energy to rustle up cows and ride into town to get drunk. They ate their beans and meat and had plenty of iron in their blood. And Popeye - heck he ate Spinach to get his Iron (Spinach is also a good source of iron) and look at how he turned out. It's always a good idea to eat something like broccoli or spinach with meat. It helps in the digestion to have the fiber present. (Broccoli is also high in relative iron and good for you in other ways as well).
A lower dose Sprycel should help in the myelosuppression area (low red blood) as well as in the pressure area (hypertension).
Studies are great especially with providing the meds however PAH is a very serious side effect. gleevec is now being studied as a treatment for late stage PAH. You might want to Google PAH as my sister has it and has to lug an O2 tank every where she goes. Only cure is a lung transplant., there are other TKIs you can take for CML. Everybody is different and everyone responds to the 3 of them in their own way. You might need to switch to one of the other TKIs.
Thanks for a very informative, easy to understand, definition of PAH. Also the health tips on nutrition along with Curcumin and Omega 3 to help raise our iron levels.
Saw my primary doc last Wednesday 6/27/12. We had an interesting conversion regarding; CML, TKI, LABS, Drug companies. Her husband is one of the pathologist at a hospital several miles from my home. She is going to have him check, into my previous labs last year at Gen Path (N.J. as there was such confusion won’t go into that) and the last two new labs at I.U. She is one smart cookie, wish she were an oncologist. She is probably about 55 years and has been around the medical field and drug companies for along time, so she knows how it all works. Along with her husband the pathologist, they make a dynamic duel. She did agree that guideline are for a wide general population which must be tweaked to each individual. No one size fits all. If things don’t work out with my new onc, she has helped give me some ideas for a back up plan. I know we like going to the best CML specialist, but at this point I am finding that my primary doc is looking at the big picture, after knowing me and my history, pretty well since 2000, I am depending on her to guide me from here. Well, lets just say she has a lot of common sense, with a lot of experience!! I guess if I were to some it up got to have team work, but I need to trust somebody to help me steer the bus, and that would be the primary, at least I feel that way today.
I am thanking the good Lord He put in the hands of a good primary doctor I can trust.
PS. I forgot to mention (in 2005) when my labs came up that indicated something was wrong. The lab called primary doc and said my platelets were only one thousand. My Doc called her husband the pathologist to check on my labs the platelets were actually one million and two week later over two million. The lab people didn’t know how to read the zeros, I guess. I have often wondered if my platelets were out of control not only because of CML but my husband and I, had been taking swimming lesson, trying to get in shape. I think I read somewhere that exercise can raise your platelets. Not sure I would have to look it up again. In 2005 I was googling platelets, as my white cells were just a little high, not much, so I thought I had some kind of thrombosis or something. Funny thing the oncologist pretty much knew what I had even before the BMB. He left shortly after that, I like him.
Thank you so much for getting back to me. My goal is to get off as much medicine as I can. Last winter my hair was falling out like crazy, (thank God I had thick hair to begin with). I started taking b12 again when I was in Fla. it helped some, now that I'm taking the iron pills, it has stopped falling out and is getting thicker. I had all the classic symptoms of low iron, I just didn't know it. I got on the internet and got a list of iron rich foods. I'm even cooking some foods with my iron skillet, I read that cooking tomato soup or chile in an iron skillet is good for bringing my iron level up, the combination of tomatoes and the iron is good for low iron. Go figure,I always thought food tasted better when I made my meals in the iron skillet. I'm trying to eat iron rich foods, but since I went on that bp med last fall, I have no appetite. The iron pills nauseate me,combine that with all my other meds and I'm always nauseated. Uggg so hopefully I can get off the iron and bp meds, And hopefully I can eat again. Ron buys me a lot of different high vit. & mineral drinks. Yogert, fruit etc. I'm trying my best,but I literally have to gag food down sometimes. Then I have to keep it down. I've never been much of an eater. My mom had the same problem, getting food in us once a day is an accomplishment! It's a nervous thing I guess. Hopefully I'll get off iron, and bpmeds, I'm really anxious to hear the results of my bw next week. I want to be able to raise hell again,( or a little bit of heck at least). I'm having a bit of a problem digesting meat,and I love a good steak,and a good burger. I'm eating liver and onions when we go out, Yeah I really like it. I eat beets,broccoli,beans,peanuts,when I can. So hopefully I'll get straighened out soon. I can't try your cuecumber(I can't pronounce that) because of the plavix,aspirin,&lipitor I take. I told you I'm only running on half a tank of gas(one carotid artery) for 4 years now so I'm not even going to try anything else. But I really thank you ,because I figured the Sprycel really had an effect on me, and now with a lower dose, hopefully things will balance out.
It's really weird for me right now, because when I was first dx, the first thing on my mind was OMG I have cancer. I don't remember how long that lasted,probably 3 years until I found this site. Now I get up and my first thought is (oh shit I have to start taking all these pills again) I don't even think of my cml.. Keep traveling, and enjoying your life, sincerely Billie
As with most drug side effects, the impact is usually reversible when the drug is removed or even reduced. So it does not mean it will be a long term issue.
The FDA has provided information about a potential relationship between Sprycel and PAH: