Hi everyone .I will be starting Sprycel and my onc. said to see him 30 days after I start the med. Should I be going this long without having any blood work done? Thanks, you guys.
Posted 01 December 2011 - 03:19 PM
Hi everyone .I will be starting Sprycel and my onc. said to see him 30 days after I start the med. Should I be going this long without having any blood work done? Thanks, you guys.
Posted 01 December 2011 - 03:21 PM
I saw my onc on a weekly basis for the first three months, then every other week for the three months, then we went to every month for the next three months, now I am at every 3 months.
Blood tests were done at each of them.
Posted 01 December 2011 - 03:34 PM
Thanks, Caroline. I have been seeing my onc. for 6 months. First I was on Gleevec for 5 months, that did not work on a molecular level, I was then on Tasigna but could not tolerate the side effects so now I will be starting Sprycel. Does it make a difference that I am already 6 months into my dx or when starting any new med. should you be seen more frequently?
Posted 01 December 2011 - 03:35 PM
Hey there Judy, Glad you are getting started on another TKI!! I believe this one will work well for you!! I am not sure about the one month appt. but perhaps others that have switched TKI's in the past can fill you in on that. It might be that it would take that long to see much of a difference in labs but if you notice any worrisome side effects don't wait that long to call the onc. Wishing you the very best!! Hugs, Skittles
Posted 01 December 2011 - 03:40 PM
Thanks Skittles. I will call you soon, today is a bad day.
Posted 01 December 2011 - 03:50 PM
Awww...Judy don't have a bad day all alone. Call anytime! (((Cyber Hug))) Skittles
Posted 01 December 2011 - 04:12 PM
To be prudent you should have more frequent blood tests when starting a new TKI drug in case your counts drop drastically or you have issues with liver, which is rare, but does happen. This does not require a trip to oncologist, you can go through your PCP or have onc call in a standing CBC to local Quest lab or something like that. I would go the first week, then every other week for a month, then at that point go to monthly and then every three months. Interestingly, the NCCN guidelines do not have a standard for CBC testing, so it is up to the doctor. I would rather be safe then sorry.
Posted 01 December 2011 - 04:26 PM
Thanks, CallmeLucky. I sort of felt like my onc. brushed me off or maybe he's just overtired.
Posted 01 December 2011 - 05:22 PM
You should have weekly CBC until your counts are stable. When starting Sprycel it is more normal than not to see a drop in blood counts. If the counts get below a safe level, you could have your treatment interupted to allow the counts to rebound. Depending on what level they started you at, an experienced CML oncologist will lower your dose quickly to keep your counts from getting too low. It is best to stay on therapy at lower dose than to interrupt high dose therapy.
I am on 20mg. Spyrcel. I have been uninterupted since May of this year. And as a result have achieved very close to Major Molecular Remission (MMR). But only because I could keep taking the drug without stopping due to low counts.
Weekly CBC until steady. I now have monthly CBC.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Posted 01 December 2011 - 06:40 PM
Thanks Scuba. My oncs office is going to call me re: forms I need to fill out to get Sprycel. When they call I'll ask my nurse if I misunderstood my onc. regarding when I should come back for blood tests(my way of being tactful). Now I'm really beginning to wonder about the hospital I'm at. Since my onc. told me to call to make an appointment for 30 days after I start the med. and I probably won't even get the med for another 2 weeks I don't have an appoinment there at all. My PCR is 55%. I feel adrift. Think it's time for a 2nd opinion?
Posted 01 December 2011 - 09:57 PM
I just plugged Sprycel in under the search option and found posts where people talk about having EKGs while on this med. Is that the norm while on Sprycel? My onc. never mentioned that to me. Thanks in advance.
Posted 01 December 2011 - 10:10 PM
Just to throw in another wrinkle you should have a baseline ekg before you start Sprycel. My Mayo hem/onc also had me get a baseline chest xray. I don't know your history but 5 months on Gleevec probably was not enough time to expect a big molecular response. You definitely need weekly blood work for a month or so.
What is it with your onc? He only gives you 5 months to respond to G then puts you on a much stronger drug without appearing to know anything about it. I'd say your concerns are justified. Sorry, I'm not being tactful but some oncs just tick me off.
If it makes you feel better my FISH at 4 mos. was 72%, but at 8 mos. it was 4% so you see what I mean when I say your onc might have jumped the gun. Unfortunately, G didn't like my liver so I switched to Sprycel at that 8 mo. mark.
Sorry, that PCR should have been FISH.
Message was edited by: Pat Otto
"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 01 December 2011 - 10:30 PM
Thank you, Pat. I am so glad your PCR improved, that does give me hope...and thank you for telling me like it is, I needed that. The thing with Gleevec was that I was only on 200mg. because I have major kidney problems (I was in renal failure last Feb. and again in June). I tried to go up to 300mg. but had too many side effects as Gleevec sits in the kidneys. Do you have continuing EKGs on Sprycel?
Posted 01 December 2011 - 11:35 PM
Hi judy2, I can see why you need to change to another drug if you are only taking 200 mg of Gleevec that would be hard to get a good response and if the Gleevec is causing kidney problems that would be even more of a reason to change. You really need a good CML specialist!!
I was diagnosed in 2005, so long ago. I was on hydroxe for about a month in that my platelets were over 2 million, (taking 3 times normal dose, not fun) my white cells were only 21, 000, but my granulytes were off so the cancer doctor had a good idea what it was even before the BMB. Also I did not take the Gleevec for about a month because I was waiting until I could get into see a doctor about doing a trial of 400mg vs 800 mg of Gleevec. I chose not to do the trial as most patients are put on the 800 mg and also I would have had to spent a lot of time at the hospital and I didn't want my life to be consumed by CM, although that first year that is pretty much all I thought about. My CBC got low very quickly, remember I had taken large doses of hydroxrea for a month before Gleevec to bring down the platelets & waiting to see if I wanted to do the clinical trial on Gleevec. I can't remember what my exact number were back in 2005, but had to go into the hospital because my white cells were down to 1.7 I think. Also my blood pressure had dropped extremely low. I don't think I ever would let them do that to me again. Kind of scary to think not only my white cells but most all my counts were very low and blood pressure, too. Had to live in isolation for awhile and make sure food was well cooked and beverage sterile, no fresh salads. No fountain drinks, etc. Went off Gleevec for awhile then started out with a low dose then worked back up to 400 mg. My CBC are still near perfect, liver and kidneys good.
In the old days drugs were tested I believe for about 10 years before they became a patient. Now some of these cancer drugs clinical trial are much shorter. To my knowledge Gleevec went into trial in 1997 and became a patent in 2001 (so that would be 4 years) and the patent will expire in July 2015 and become generic. I don't know how long Tasigna or Sprycel were in trial. I believe Tasigna became a patent 2007. Anyhow I would hate to change even to a newer drug. Although one of the experts at IU Simon Cancer Center Indy Indiana, said most patients are the opposite of me, they just want the latest and newest. However, I believe if one is doing well on gleevec with a good response and can tolerate it well, there is more data or history on the drug. Example, recently, I believe it was Trey reported that Gleevec study showed a potential of osteoporosis, bone loss. I guess Gleevec inhibits phosphates in the body, and proper levels of phosphates are needed for the body to maintain bone density. What my point is, or something to ponder on, the longer a drug has been out or the more data, the more they can learn of some of these long term side effects. I know we have all these labs, but I think sometimes some serious side effects cold perhaps become deadly or irreversible, like QT. I know they like to push the newer drugs but I don't think that always means they are better. Unless you really have a good onc on top of things and they change your drugs for a valid reason, that is the only way I would change for Gleevec, not just because someone said newer, better. According to doctor at IU Simon Cancer these drugs are different chemicals and I don't know for sure which drugs are better for which mutations one might have. So there is a lot to consider. I for one would not want to change unless I went to the best team of specialist in the CML field and did a through review of all the test.
That is why I went for a second opinion at the #1 cancer center in Indiana. A whole different attitude when you are dealing with the top specialist. I don't take changing med's lightly. I have read on some post where people had went to other drugs and had other issues, sort of a trade off and then went back to the original drug and had a different set of issues. I think most patients feel the side effects last only a few months. However I often wonder what about the long term side effects. You know how you hear these things on TV where a drug has been out for many years and they pull it off the shelf because they found out it was causing such and such. It is really important to go to a specialist group. I think it would be better to go to a group of specialist, I like to call them the think tank, and hospital that does their own labs with in a 48 hour time frame, them sending them out of state.
I really have not done much research for the last few years, until my doctor started pushing me to change to Tasigna, then I started doing my own research. You are your best advocate.
Posted 02 December 2011 - 12:41 AM
Judy,Judy,Judy, Don't cry get a steak out of the freezer and pound the hell out of it with a meat tenderizer cook it for supper tomorrow and I guarantee that will be the tenderist steak you ever cooked. I did that one time and killed my formica countertop. I did get in a bit of trouble over that but I was mad!
I swear some of these oncs get their medcal lisence from sears or k-mart. I had my first onc for 3 weeks, He was horrible he dx me gave me a bmb and a bma a script for Gleevac and told me to come back in a week I took the med and was so sick and when I went back in a week I told him how sick I was he said G doesn't make you sick it was my nerves did bw and told me to go home and listen to classical music.And come back in 2 weeks. Before the two weeks was up I caught pneumonia and was admitted to the hospital. He showed up 2 days later and said what are you doing here? I told him I had a temp of 103 and called my gp and she said go to the er.Of course it was a Saturday. When he came in on Monday he was getting ready to go on Vacation so he had another Onc covering for him (which was the original onc I was supposed to see in the first place but I guess he had to go to a conference or something) he was wonderful and when I told him everything and he looked over all my test results I begged him to take over my case. Which he did I truly believe he saved my life I understood nothing about cml but I think I heard my wbc was 2,000 I was in the Hospital 5 days when he released me he took me off Gleevac for a week I kept having bw every few days for a while then every 2 weeks for quite a while and probably about 5 months after dx I only had to have bw once a month and I had to see him every 3 months. Occasionally he would order bw more often. I had awful gi issues on G finally last year he took me off G for 5 heavenly weeks and then I started on Sprycel and I think I had bw every week for a couple weeks then every 2 weeks for a while then finally once a month which I still have to do now and I still have to see him or his nurse every 3 months but every 6 months now I have to see him. But except for some problems with low iron and anemia I have had no other problems with my cml. But he monitors my bw very closely which I think your onc should do also especially since you have had problems with your other tkis. Theres nothing worse than people who put your doctor down because of some bull they heard. We put our lives and our families lives in their hands everyday. And we don't want to hear bad things about them. But now you're in a totally different league. You have cancer and you have problems with the tkis not just the big D or nausea you have to be monitored closely because of more serious issues. And all of us who have responded to you have said the same thing you have to talk to someone else about this. After my experience with my first onc. I lost a lot of respect for the medical profession. All doctors used to intimidate me not anymore, Remember they are working for you. So suck it up and get some guts and tell this onc you want to know why he isn't monitoring you more closely let him think you are not and idiot there is a lot of info on these boards. Use that knowledge. I know it's hard especially when dealing with cancer but cml is treatable and probably curable soon. And you're terrified but there are thousands of us out there if you read the no of views,not everyone puts up a post but you can see how many people read our board. And they are all cml survivors or their family. And we refuse to lose a member of our family because of an incompetant onc.
And I'm in a really pissy mood because of what these morons put our family through. When it is totally uncalled for. You are going to be just fine but just seeing what you and Pam are going through right now just makes my blood boil. Because it is totaly uncalled for. Love Billie
ps my mouth has gotten me on cnn,a3local tv stations and all local radio stations plus our daily newspaper and they want more,they call me. I'm Irish can't help myself. Just to clarify the record I have never been arrested yet. Just fired as a volunteer at a Senior Citizen Center & they keyed my car! Because I scrubbed down the entire dining room and kitchen because there was a terrible flu epidemic going around. But I didn't ask permission first. I did it after everybody left. The director was still there and she thought it was a good idea. So I couldn't call bingo no more. I am not a bossy person I'm a wimp
Posted 02 December 2011 - 01:29 AM
Billie M. Appreciate you telling it like it is. I remember those first months, just like you, going to the doc, and all you hear it is just anxiety, etc, etc, Just blowing you off, sort of made me feel like I was going crazy. I don't think a lot of the doc's write or log the whole story, just what they want. Family didn't want to deal with it, felt like I was out there alone. I finally got up some guts and a couple of months after diagnosed flew from Indiana to MdAnderson Tx for 4 days of test. Got an education there. I think it shocked a few doctors and my family. I just got tired of nobody hearing me an feeling intimated and sick and fighting with the insurance and all.
Thanks for your input. It is hard to get gutsy when you are first diagnosed, confused scared, don't know what to say, what is going to happen, intimated, sick, dealing with bills, insurance, etc.
Like you I have gotten a whole lot thicker skin.
Posted 02 December 2011 - 02:41 AM
Hi Pam, You must be like me drag around all day then can't sleep at night? Or maybe it's the time zone I'm est. I'm probably the oldest one on this board I prefer mature but what the hell I'm old. I got cml when I was supposed to at an older age. And to have all these young people being dx is breaking my heart. And to have them being treated by these arrogant a--holes is really getting to me. These are kids younger than mine going through this nightmare with babies of their own.
Being told they have cancer but don't worry about it take a pill a day get bw once a month and I'll see you next month. It infuriates me. And why is this happening?I've had cml over 4 years and I'm doing okay. My biggest problem is fatigue. I have had a lot of time to think about it and I just keep wondering,not wondering knowing why nobody can tell me that nuclear plant explosion last year or that oil spill or every time we fill up our gas tanks isn't affecting us. I was in Florida 2 years ago and another space shuttle was launched I was hundreds of miles away on Sanibel and we could see that black smoke as clear as if we were standing at nasa.And we could see it for at least 15 minutes then the haze set in for about another hour can you imagine how many innocent people were affected by just that one launch? I apologize I'm not usually a down person but I am so stupid when it comes to computers and another little girl named Missy sent me a private letter asking me how to post a question about cancer and I'm trying so hard to help her but so far we haven't been able to touch base. I have my e-mail address posted so anybody can e-mail me I should have been more careful about posting private info but I was to naieve and when I got this new computer someone hacked into my facebook account and asked the singer Susan Boyle for money because I had cml and my meds were $26,000 every 3 months plus they asked for money for the breast cancer society.I don't like or use these social networks only this one but my son-in-law downloads pictures of my grandsons on it. He can't be bothered sending them to me but he'll post them on facebook.Grrrr.
It was really nice hearing from you I hope you are doing okay. Feel free to e-mail me anytime my memorys shot but if I'm right it hasn't been long since your dx .We'll teach these young,uns how to kick butt. I have a feeling we have a lot in common. Sincerely Billie
Message was edited by: Billie Murawski Dear Pam I just reread your post you have more seniority than me I am so glad you told Judy the cold hard facts. I guess the best way we can help these kids is to let them know that their only option is not the closest onc. I got lucky but if anyone gets stuck with a moron call the lls. No matter what your circumstances are they will help you And by following the board they can see that they don't have to put up with all this crap.
Posted 02 December 2011 - 08:10 AM
I was on Gleevec 400 mg for 22 months and then switched to Sprycel 100 mg, 3 months ago. For me the side effects are much less on Sprycel, and being able to take with or without a meal is a bonus. From what I understand, it is important to have a EKG prior to starting Sprycel to establish a baseline. Then have another EKG within a couple weeks to see if drug is affecting your heart. I then saw my Onc month later for blood work. Now I will see him in 3 months as he is ok with the blood work results. Judy, it never hurts getting second opinion, I did and changed to the current Onc, and I know it was the right thing to do! Good luck, and all the best, Jeff
Posted 02 December 2011 - 02:30 PM
Thank you Billie, Pam and everyone. Everyone on this board has been so wonderful to me. Billie, you are soooo funny. I did go the freezer, didn't have a steak, had a shoulder lamb chop, pounded it, not quite the same thing. I am going to get a 2nd opinion. The funny thing is my onc. is at a major hospital and has many cml patients. Oh well, I guess nobody said this would be smooth sailing. Thanks again.
Posted 02 December 2011 - 02:38 PM
Thanks Jeff. I am so glad you are having good results with the Sprycel and have less side effects. It gives me hope.
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