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#1 Calalily

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Posted 11 November 2012 - 05:22 PM

Hello,

I'm brand new to all this. I've being diagnosed with CML post bone marrow biopsy. I'm 30. Finding it all rather daunting at the moment but have found this forum and Trey's blog a great source of info so far! I'm just wondering if you can help me re the drugs. At the moment my options are Gleevac or Tasigna. My thing is that I know people have been on Gleevac for years so it's been proven to give good results and people are surviving well on this drug but reading between the lines there are various side effects . While Tasigna seems to provide quicker results i'm worried about the long term outcome on Tasigna because it's so new and again the side effects. I'm actually seriously stressing about how I will cope on the drugs- my tummy is dodgy at the best of times! Also I would take paracetemol/ ibuprofen for headaches etc and will I be able to continue to take these when necessary. Hoping when i get started on the medications, i'll calm down a bit! I really dread the bone marrow tests too- they are nasty!!!

Thanks folks and best wishes,

Calalily



#2 cam_kris

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Posted 11 November 2012 - 05:54 PM

Hi Calalily!

I am so sorry to hear that were dx with CML but glad you found this site.  I was dx back in March and this website has indeed helped me in many ways.  You will get lots of your questions answered here by people that have / are going through the very same thing as you are

Between the two drugs was a huge choice for me too.  at the end of the day, I took Tasigna.  I found out that Tasigna has less side effects then the rest with a faster results.  I asked the Dr when I was tryng to decide what would he do it it was his wife and without hesitation he responded Tasgina.  I am happy I did make this choice but you will have many that say Gleevac works just if not better then Tasigna.  But at the end of the day it is your choice. I cannot comment on Gleevac but there are many on here that can.

I can tell you from my experence I only had a rash.  it was a rash that i let get out of hand, i thought it was just an itchy spot that turned into an entire body rash but I didnt realize that was one of the side effects.  I didnt do my homework. I did call my Onc  and he gave me some meds that took it away very quick. So that is only thing that I have had.  So I feel very fortunate.

I take Aleve or Tyelnol for any kind of headache or pain.  and has worked just fine. 

As far as the bone marrow biopsy,  the first one I had i was put to sleep (that was the Onc Idea)  the one at 6 months I insisted to be put a sleep.  I was scared to death and felt I have enough to deal with that i dont need that extra stress.  Its a piece of cake going that route. I have heard horror storys on it and the,n i have heard that it wasnt that bad.  I wasnt going to chance it at all ! I hate pain!!

going back to Tasigna my blood counts were all normal in 2 weeks. When I say normal, my wbc was 201.7 and two weeks later it was 7.2 with everything else pretty much in check.  I really felt like a winner for sure!!  I too do not know of the long term of Tasigna, but I wanted the newest and latest pill to get the fastest results.  and I was really scared of being sick all the time.  Now saying this I didnt know for sure i wasnt going to get sick but the chances were very good that i wouldnt. and has turned out good.

I wish you the very very best, this site has calmed me down answered my questions and helped me understand lots. 

Take care!

Kris



#3 Trey

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Posted 11 November 2012 - 07:29 PM

There is no right or wrong answer as to which drug to start out with unless a person has high risk factors, then Tasigna or Sprycel should be used from the beginning.  But assuming a person is diagnosed in early to mid chronic phase with no high risk factors (ask the Onc if there are any) then Gleevec is entirely acceptable as a starting drug.  Stomach issues will likely occur with either drug, but may be less with Tasigna (cannot promise that -- we are all different).  Tasigna may be harder on blood counts and cause them to be too low, especially for women as noted from my observations here. 

As for pain relievers, Tylenol (paracetemol) is too hard on the liver in combination with TKI drugs and Motrin (ibuprofen) has shown some drug interference in some studies, so I would avoid both.  I personally would use Aleve (naproxen) instead. 



#4 Calalily

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Posted 12 November 2012 - 03:46 PM

Kris and Trey, thank you so much for your help. Good to hear you have been responding well to treatment Kris and that your onc was able to help you out with meds for the rash. You did really well getting the blood counts back to normal so quickly- hopefully I'll be the same!  You are lucky you get sedation for the biopsy- I begged for sedation but they will only do the procedure with local anaesthetic where I go due to cutbacks and staff shortages. I would happily let them name their price just to be put asleep for it! I've never heard of Aleve before so I must look into that in my local pharmacy- they're going to be my new buddies!  Going back tomorrow to see my consultant so hopefully that'll go well and i'll have a plan in place. My WBC were 26 last time and my platelets were 496 so not too bad I think and it seems like this has been caught pretty early.

Best wishes,

Calalily



#5 Susan61

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Posted 13 November 2012 - 09:55 PM

Hi:  I have not been on here lately, due to other problems I am going through.  I can only tell you that I have only been on Gleevec, and I started taking it in Oct. of 2000.  I was diagnosed with CML in 1998, so I hope that makes you feel a little better about how this disease can be treated successfully.   Every drug has side effects of some kind, but you have to find what works best for you.  You could start on the Gleevec, and at least know if it does not work for you that you have other choices.  I had no choice but Gleevec back in 2000.  CML is very treatable.  As soon as people hear the word LEUKEMIA,  they go into a panic. Like Trey said stay off Tylenol, as you are advised that Gleevec with Tylenol can do extreme damage to the liver.  I myself am not allowed to take Tylenol or Ibuprofen, and have had an allergic reaction to Naprosyn so that leaves out ALeve for me too.

    Let me welcome you to the group, and you will meet a lot of great people here.  You can get answers to almost anything you want at anytime.

   I am also having computer problems for weeks now, and sometimes I cannot get on here.  I will try to keep up with whats going on if I can.



#6 luvmybees24

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Posted 13 November 2012 - 10:29 PM

I was diagnosed in November 2012 so it has been a year for me. In 6 months I had a MMR and in 9 months I had a CCyR. I have been on Tasigna this whole time. My numbers are all normal and my BCR-ABL tests are 0%. The only side effect I have with Tasigna is that I bloat a lot more during my period. I gain and lose 15 lbs a month now. It's NO fun but it's livable. Other than that, I live a completely normal life. I take Tylenol and Aleve. No doctors ever told me to avoid Tylenol....

Laura.



#7 Marnie

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Posted 13 November 2012 - 11:18 PM

Hey, Susan. . .sorry to hear you are going through some stuff.  Best wishes to you.

Marnie



#8 sarahboxley

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Posted 14 November 2012 - 02:42 PM

Hello,

I was just diagnosed on August 31st, and I am 31 years old, so I think we were faced with similar decisions about which drug to take. (this is my first post, but it struck me how similar our situations are) Obviously I am still very early in my treatment process, but I will tell you my experience so far. My onc specializes in treating younger patients with cancer, and he really agonized over which drug to recommend. In the end, we decided together to take Gleevec 800mg (400mg twice a day). We were most comfortable with Gleevec's long term safety data because of my age, but I was ok with trying the higher dose to try and get to MMR as soon as possible.

So far, so good. I achieved a normal WBC at 12 days. I did experience some nausea and upset stomach, but it literally only lasted for 4-5 days, and it was mild. The only small problem I have experienced was a pretty large amount of joint/muscle pain after I stopped taking allipurinol, so I stopped taking the Gleevec for 4 days. The onc thinks my body went into a pseudo-gout attack because I went from 300mg of allipurinol to nothing. I am back on the medicine now with no side effects.

This first year is certainly full of emotional swings so far! I am thrilled with my response so far, but I am already dreading my PCR and bmb at 3months (December 12th!!). I just want to know and hate the waiting! I wish you the best of luck!!

Sarah



#9 mikefromillinois

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Posted 14 November 2012 - 03:41 PM

Hello Calalily,

For what it's worth this was just posted today on the National CML Society Facebook page:

http://www.youtube.c...&feature=relmfu

Myself, I'm 16 months into CML treatment.and have been on Sprycel from the beginning.

Wishing you a great response to whatever drug you decide upon, continued good health, and many happy days...

Mike



#10 Trey

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Posted 15 November 2012 - 06:19 PM

Sarah,

Very few Oncs would start with 800mg (max dosage) Gleevec.  The hazard is driving the blood counts too low, which often causes frequent drug holidays.  This often will yield a less desirable outcome than standard 400mg dosage on a steady daily intake without breaks.  Some can do fine on 800mg but they are probably rare.  It is usually better to see what 400mg does, then adjust as needed.  I couldn't take 600mg Gleevec for very long when I asked to take higher dosage after a couple months on 400mg.  I would suggest keeping a very close eye on the WBC, RBC, and platelets and be prepared to drop to lower dosage at the first sign of any myelosuppression (low counts).  Starting on 800mg is not a "wrong" approach, but it is unusual.  I would add that is often harder for women to take the high dosage, although there are certainly exceptions.



#11 sarahboxley

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Posted 15 November 2012 - 09:48 PM

Trey,

Thanks for your information. That is definitely something that we discussed when I made the decision to go for the 800mg dose. So far my counts have stayed in the normal range, but we are keeping a close eye on my WBC & RBC because both are borderline. My onc is at a major university hospital, and he readily admitted that this is an unusual approach. So I totally understand and agree with what you are saying - and it is good to hear the reinforcement of what I have been told and read!

I neglected to mention that I actually reduced to 600mg recently, and I have been holding there for approximately 2 weeks. (Accidental omission, not holding out on anyone!) After my pseudo-gout attack (also highly unusual, from what I have been told), we decided to try the lower dose for a few weeks and see what my counts look like and to see if any of the painful joints and limbs resurface. So far I don't have any side effects at 600mg where I did have some muscle soreness at 800mg. I go next week for another CBC, so I am extremely interested to see what it looks like.

Question for you since you are obviously very knowledgeable - what kind of results should I expect at my 3 month bmb and PCR? I am pretty anxious about it already, and it is a month away!

Thanks again,

Sarah



#12 Trey

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Posted 16 November 2012 - 11:32 AM

Good to hear you reduced to 600mg already.  That seemed predicable.  I would not try to go back to 800mg if I were in your position.  Further reduction to 400mg may also be a good idea.  Most of us have low counts after a couple months, so below normal is not a real problem.  The issue is to try to avoid "way below normal".

Regarding the pseudo-gout issue, it is important to take Allopurinol until the WBC is below about 20K to help eliminate the large amount of lactic acid from the massive numbers of dead leukemic cells.  I would also blame to 800mg dosage for that.  I think it is too much, too fast. 

Your WBC so far shows a response to the drug, but actual BMB/FISH/PCR results will vary per individual.  You should be pleased with the results so far. 



#13 Marathon

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Posted 18 November 2012 - 03:00 AM

WOW !!!

It did me well to read that Susan 61 post. We are all different but with CML diagnosed in 1998 and sharing experiences here.

You've made my day !!!

M



#14 Calalily

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Posted 18 November 2012 - 05:25 PM

Apologies for my delay in coming back to this topic. Wow I've been shocked in a really positive way by the level of support and information on here. Thank you so much to everyone who gave me advice above. I had some ivf treatment last week to freeze some embryos (with approval of consultant) so these past few weeks have been crazy shifting from cml to ivf and now back to cml! 

Susan, so nice to hear that you have been doing so well on the medication. It really helps to hear that 14 years on, you're doing well and long may that continue for you! I think it's so reassuring for people like me that are just diagnosed to hear stories from people who have adjusted well. You're so right- when I've mentioned leukemia some of my friends and family have openly cried and I'm the one reassuring them that it's going to be fine!

Laura, I'm really hoping I am doing as well as you in a year! You must be delighted that you've been responding so well and that the Tasigna seems to have agreed with your body pretty well. I feel for you with the bloating around the period though, it's bad enough having the period!

Sarah, I couldn't believe when I saw your post- we're so similar in age and not too long since your diagnosis too. I'm so happy that the Gleevac is working well for you and that sounds really good that your consultant is working with younger patients and you are able to make joint decisions. I'm back to see my consultant this week and hoping they will give me some guidance on the drugs as it's a big decision to try and make. In fairness my consultant does seem lovely and I'm sure she'll help me out in the decision making.  My big thing is that my husband and I really really wanted to have children, it had always been in my long term plan! I understand that is not going to happen for a good while now but I'm not giving up on that dream for the future. I know it's horrible thinking about the bone marrow biopsy, I reckon mine will be in the next 3 months anyway. I know they're important to see how we are responding to the treatment but wouldn't ya think there's an easier way!! I'm going to try my best not to worry about it until nearer the time- easier said than done for sure! I hope you get on well with yours in December.

Mike, thanks a million for that link! My laptop doesn't know what's going on with all the activity over the last few weeks. I'm one of those people who wants to know everything so I'm researching researching and researching! That's great that the Sprycel is working well for you. My consultant doesn't use that one initially anyway but from looking on the forum it seems to be very good also.

Wishing everyone continued health and happiness. This forum is invaluable! :-)



#15 sarahboxley

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Posted 02 December 2012 - 10:00 PM

I am so glad for you that you were able to go through IVF before starting treatment. We are fortunate to have our 2 year old little guy, but we are also making plans for a surrogate with eggs from me (to be harvested post molecular response) or with a donor egg. I wish you all the best, both with your hope to have a family and with your CML!

Have you been able to make a decision yet on your medication? I have my 3 month bone marrow biopsy Dec 12th, so please keep your fingers crossed. I have been doing well on the 600mg of Gleevec - no side effects and my bloodwork is all within normal range. My WBC started at 71k and is now 4.4k. Modern medicine is truly amazing, and it gives me so much hope for people our age!

I was reluctant to join the forum, but even just reading all of the posts and information makes me feel so much more positive and optimistic about my future with this disease. Best of luck! Please keep me posted on your journey!



#16 sharcare

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Posted 03 December 2012 - 08:48 PM

Is Tasigna and Sprycel the same thing?



#17 GerryL

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Posted 03 December 2012 - 10:47 PM

They are both second generation TKIs - Gleevec being first generation.

From Trey's Blog

Regarding Sprycel and Tasigna. Generally, and over-simplifying the issue, Tasigna is a stronger form of Gleevec in that it works like Gleevec, but binds tighter. Sprycel works very differently, and shuts down BCR-ABL in both active and inactive configurations, unlike the other two that only work on the inactive form of BCR-ABL. Tasigna is approved for Chronic and Accelerated phases, but not Blast phase. Sprycel is approved for all 3 phases.

http://treyscml.blogspot.com.au/



#18 sharcare

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Posted 04 December 2012 - 01:10 PM

Thanks Gerry.  It is still taking me time to wrap my head around all the dif.. drugs and appreviations!



#19 GerryL

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Posted 04 December 2012 - 07:59 PM

Trey's blog is good place to start. It takes a while to get your head around things, but don't forget you can ask about anything here. I probably need to find out a bit more about Tasigna as I may switch to it next time I see my doc.






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