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#1 Chris1579

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Posted 24 February 2012 - 09:33 PM

Hello, All,

My Dad is 74, a very young 74, and last Friday we found out he has CML - I posted on another site and Jack (again - many thanks Jack!) sent me a link to this site along with Trey's Blog - which is AMAZING!  They have prescribed Tasigna - Dad has put the script on hold; the entire CML can really make your head spin, so much information to understand - this has been caught very early - white count at 23 - BMB does show the Philly Chromosome - he is concerned about the side effects, quality of life, feels like is just a dollar bill sign etc. etc.  He was doctoring at Henry Ford Hospital then we took him to U of M in Ann Arbor, MI for a second opinion - at U of M he is doctoring with a Dr. Talpaz - from what I have read he is one of the doctors that helped develop the original med to the market - Gleevec - and started at MD Anderson, he is suppose to be one of the best - can anyone confirm this??  As suggested in Trey's blog - we have asked for all his results to be sent so we can look at them - it just seems the doctors come in tell you you are confirmed to have CML and you need to get on the meds NOW - not much discussion on what specifically the test results should - so I am not sure he had a FISH test or the result, what the PCR test showed or even what the BMB showed except that it did have the Philly in it, no blast cell that he briefly meantioned and that it was in the very early stage - oh and that his white blood cell cont was 23 -  I have asked forall the results to be sent so we can see for our own eyes - you know they just want you to "trust" them - they are the doctor.

The entire insurance thing is another head spinning event - my Dad, because of his age has Medicare with a supplemental gap insurance through Blue Cross Blue Shield - Medicare will only pay a very small amount and Blue Cross pays some (something about being in the donut or the hole - no joke)  my sister has been dealing with the insurance part and she has come to the conclusion that it will cost my Dad some $10,500.00 out of his pocket per year - as the med ordered is $90,000.00 per year (because there is no generic)- my Dad has been financially responsible his entire life so he is not a candidate for any type of assistance.

I see that Penn State may have stumbled onto a cure with the fish oil - not sure the funding will go through if there is no money to be made - any thoughts here as my Dad has went and got himself some fish oil and is hopeful of not taking anything but that - my sister plans to call Penn State -

Lastly, I could not help but notice when reading through the other blog that the Gleevec is starting to not work on a lot of people - any thoughts why this would be??

Any and all information that anyone can provide would be greatly appreciated!  God Bless!



#2 GerryL

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Posted 24 February 2012 - 09:54 PM

Hi Christa,

Welcome to the site - CML becomes a bit less scary when you have other people to talk to who are going through similar things to what your dad is going through. I'm on Gleevec, so won't comment too much on Tasigna, other than to say for a lot of people the side effects of Gleevec are one of the main reasons people swap to Tasigna or Sprycel. Also the docs in the States (I'm from Australia) are more likely to start people on the second generation TKIs - Tasigna or Sprycle as these work a lot faster on the CML than the Gleevec.

You might like to mention to your dad that I was taking a fish oil supplement and still wound up getting CML. I still take fish oil along with the Gleevec. What Penn State may eventually produce won't be what you can currently buy in the way of a fish oil supplement. Happycat (Traci) might like to comment on what Penn State would be doing with the fish oil as in refining it and stripping out the bits they don't require.

I'll leave it to others to talk to you about insurance as our medical system is somewhat different to the States.



#3 hannibellemo

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Posted 24 February 2012 - 09:57 PM

Christa,

Wow, your head must be spinning, too! Dr. Talpaz is one of the very best specialist so your dad went to the right place. It is a whirlwind ride when first diagnosed but your dad really should start taking his tasigna. On the one hand, although he was caught in the very early stages it is amazing how quickly the wbc can rise in count. He doesn't want to start having spleen involvement, etc. The fact that he was caught early means he can start his medication early and head off any complications. On the other hand this is a chronic condition, not that it will never worsen, without treatment, it will, but he does have some time to absorb all he has learned.

Unfortunately, there is no magic cure in fish oil, yet. They're a long way off  from proving anything but there are a lot of things under investigation - so, just have him take his fish oil along with his tasigna.

The medicare bit is very frightening for many of us who are approaching that age. I wonder if I will ever be able to retire, insurance has become such an important part of my life.

Trey will be better able to answer your question about Gleevec, many people are still doing fantastic on it but there does appear to be a percentage (40 or so comes to mind) who will, over the course of their treatment, move on to the 2nd generation TKIs. It's still a good place to start though and unless there is a specific reason against it your dad might argue in favor of Gleevec if only for the economics of it.

Good luck to you all. I'm glad you found this site and I hope your Dad does well with whatever treatment he chooses.

Pat


Pat

 

"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>


#4 Trey

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Posted 24 February 2012 - 10:11 PM

Except for the cost issue, the best thing to do is to take one of the three TKI drugs (of which Tasigna is one).  It is good the CML was caught early.  So the most likely scenario is that he takes a TKI drug and all is well.  There will be some side effects, but nothing compared to letting the CML advance and get out of control.  That is not something he wants to allow to happen.  The fish oil thing is not the same as what you can buy in the store.  So forget that.  The compound must be further enhanced.  But even then it is untested and most of these things do not work as expected.  Mice are mice, and are not humans.

Dr Talpaz is one of the best.  But this case seems fairly much standard, so Dr T will just tell him to take the drug and see what happens for a few months.

He should take the TKI drug and have regular monitoring.



#5 Judy2

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Posted 24 February 2012 - 10:16 PM

Hi Christa,

I am so sorry your dad has CML but I am glad you found this site. It is great that his CML has been caught early on but he does need to take his med so that his WBC does not go  higher and his CML does not progress. Some people react well to Tasigna, others may not, I think it is really trial and error. In regards to the cost of medication, your dad should contact Novartis, the manufacturer of Tasigna and they will hook him up with a co-pay organization called HealthWell that will help him pay for his meds. Actually, he can call HealthWell directly at 1-800-861-0048. HealthWell helps people who have insurance and cannot afford the co-pays. I hope this ws helpful.

Judy



#6 deborah53

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Posted 24 February 2012 - 10:18 PM

Hi Christa,

I was diagnosed in September of 2011 and my oncologist put me on Tasigna right away. It was a shock to discover the cost of the medication, and taking that in while trying to accept a blood cancer diagnosis can be very overwhelming. I also was very concerned about the financial burden I was placing on my family. I am not old enough for Medicare, but at the time was on my husband's insurance and our deductible was $4000 and out of pocket $11,900. What saved us was that Novartis (They make Tasigna) offers a co-pay assistance program, and last fall they covered the first 3 months of out of pocket costs completely, and then after that  cover up to $150/month in co-pay assistance. Your father may want to ask if this program is still available. I am not sure if it applies to Medicare recipients. It is a tough thing to deal with!!

As for the Univ. of Michigan- I was seen by Dr. Harry Erba and cannot say enough positive things about his expertise. I also hear that Dr. Talpaz is amazing- so your father is in excellent hands. Good luck with all of this- it does become easier to accept over time.

Deb



#7 Chris1579

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Posted 24 February 2012 - 11:19 PM

WOW - thank you so much for all the very helpful and useful information!  Yes it is very overwhelming - makes your head spin but it is great to find such a supportive group.  Now if I could just get my Dad to use a computer he could connect direct - LOL 

Dad had one additional question, after I read your posts back -  Dr. T wants to put my Dad on 1 pill per day for 3 months than move him to 2 pills per day again the T - why move to 2 pills per day if 1 pill works?  Any thoughts??

Again, many thanks and God Bless



#8 Judy2

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Posted 24 February 2012 - 11:27 PM

Hi Christa,

I'm thinking your dad's onc wants to start him out slowly on the med so  his body may have a better chance of adjusting to the side effects. Others on this board, though, will be able to answer that better than me. One more thing regarding HealthWell, you should call them soon as they tend to run out of  money as the year goes on.

Judy



#9 pammartin

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Posted 25 February 2012 - 08:46 AM

Hi Christa,

I don't have any additional information to add, everyone is so great about welcoming new people and providing excellent information.  Please let us know how everything is going and don't forget to take care of yourself.  Your dad is receiving the best of care, don't forget to take care of you!  Welcome.

Pam



#10 NotJack?

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Posted 25 February 2012 - 09:29 AM

Hey Christa,

Glad you found us over here.  There is a lot to take in.  I am slowly getting up to speed by following the postings here. Also, if you have a specific question, you can search the archives for previous discussions, although be careful about how old the information is as everything drastically changed for the better for us after Gleevec in 2001. If you find something that you find useful from the archives, or elsewhere, please link it for others.  I am guilty of not searching the archives as much as I should for answers, but everyone here is very helpful about linking and directing me to good info. There are always new folks joining up, so you are helping them out by reposting good info.

Remember that this is a relatively slow cancer in the chronic phase, and the drugs generally work.  Trey doesn't see the need for the CML expert, unless your general oncologist finds that your bloodwork finds an anomaly, and I am sure that he is right!  Still, I find comfort in having my "hired gun" look at my numbers, and see me at "key" times -- every 3 mo or so, until a year from dx.  There have been differences in the recommendations from them, and it is nice for me to hear both of their reasons for the difference.  They are both supportive of which way I go, realizing that there many roads to recovery (within the context of finding a TKI that works for you).  I am just coming up on my 6 mo visit.  Did the Novartis site help?  The state of Michigan may have a insurance supplement that may help,  and the Feds have a program for "uninsurables" who have insurance, but whose insurance doesn't cover the drug enough.  Minnesota had a law passed in the "90's by Martin Sabo, that directed that if an insurance company wanted to practice in the state, they had to cover uninsurables at no more that 125% the cost of a "normal" client.  Perhaps Michigan had a similar program.  This is totally funded by the insurance companies, they even take turns administering the program. 

The nice thing about a hired gun, is that they are more familiar with the standard protocol.  My general oncologist saw no need for certain tests that my specialist found to be definitely necessary.  It was up to me to make the call.   Nice to have you here, tell your father to hang in there,  the fog of info tends to lift over time. That is when I go back to Trey's blog to get another shot of information.  (Thanks Trey!!)  I retain a little more each time.  Take care, Jack


Jack


#11 Trey

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Posted 25 February 2012 - 10:40 AM

The standard Tasigna dosage is 300mg twice per day.  Since your dad is starting with a lower level of leukemic cells than most of us started with, Dr Talpaz may think once per day (either 300 or 400mg) might work fine for his case.  It is possible that he may also be considering the cost issue in this case.  It is interesting to hear that Dr Talpaz would start someone at half dosage.  That will be interesting to watch the results and speed of response.  Many of us would like to see more personalized dosage considered for these drugs.



#12 Happycat

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Posted 25 February 2012 - 12:47 PM

Hi, Christa,

Sorry to hear about your dad, but it sounds like they caught it nice and early, so hopefully his road will be an easy one.  Have you tried discussing the final situation with the doctor/hospital?  I would think they would also have information about insurance copay help.  I'm on gleevec, not tasigna, and I'm not sure why Dr. T wouldn't start your dad on that if he wanted to try it.  I don't think there's a huge difference in cost (might be, I don't know), but gleevec will go generic in a few years, so price will drop then.  I think that's not until 2015, though.  I can't speak to the difference in side effects, having only been on one of them.  Others here have been on 2 or 3 and can give you a better idea of pros and cons. 

Regarding the fish oil, it wasn't the fish oil that showed the activity against leukemia.  It was a synthetic derivative, meaning they started with a compound in the fish oil and changed its chemical composition ever so slightly to enhance the anti-leukemic effect.  Thus, taking fish oil itself is unlikely to have as much of an impact.  It might have some slight activity, but not as much as the derivative.  Also, if I remember correctly, the derivative was only tested in mice, and mouse tests can have significantly different results from human tests.  (Rats are actually better human models for drugs - what does that say about us, lol??)  Regardless, this is a very early report in the drug development scheme, it's really more at the proof of concept or lead development stage, meaning this could be a good 10 years away from an effective treatment. 

HTH,

Traci



#13 Chris1579

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Posted 25 February 2012 - 05:17 PM

Again many thanks for the support and information!  I stand corrected Dr. T is putting Dad on a half dose which would be 150 mg pill in the morning and 150 mg pill at night - not one pill per day I thought -

I read the additional posts to Dad and yup, a few more questions came up - the timing of the taking the T - don't eat one hour before and 2 hours after - how does this work?  Any experience on a schedule that works well - Dad lives alone and his memory is well - not so good - and the dx with CML has really put him into a fog so any help or suggestions would be greatly appreciated.

Also, I read magnesium is a supplement you should take when taking T - not with the T - but a couple hours after - are there additional supplements that he should consider taking?

Lastly, as I expressed he has put his script on hold - he is starting to come to terms with the fact it would be better to take a half of a dose now than let it progress - question is at what point is your WBC considered super high, in other words, what about him just having his WBC monitored and if it continues to go up then he goes on the meds (for the record, this is NOT my suggestion but another family members suggestion) - thoughts here?

Jack - the Norvartis site was no help - my Dad has been financially responsible his entire life and did a good job saving - every place my sister has called takes that in account and so he has really no chance of receiving any assistance - he is pretty angry about it and I can't say I blame him.  He also worries about next year with the changes in the health care system - I told him not to worry about next year just deal with the here and now - for now - Again, many thanks for your help!

God Bless!

Christa



#14 Judy2

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Posted 25 February 2012 - 06:00 PM

Hi Christa,

You might want to contact HealthWell regarding financial assistance. They take into consideration your income but I'm not sure they figure in your assets.

I was on Tasigna for a short period of time. I took it first thing in the morning and didn't eat for one hour after that and took it 2 hours after dinner and didn't snack for one hour after that. When my step-father was ill I was in charge of his medicine. I got him a pill box, would set it up for him at the beginning of each week and would check it daily to make sure he took  his meds. I don't know how far  you live from your dad but perhaps if you can't get over to  his house you could call him in the morning and  night and make sure he has taken his medication. If you think the eating schedule is too much  you could ask his onc. about Sprycel or Gleevec instead of Tasigna as  you can take both of these meds with food. Also, Christa,  your father should start taking his meds and not wait for  his CML to progress. I don't know what his WBC was when he was dx but it is not a  "wait and see what happens" kind of disease. My WBC was 81,000 when I was dx and about 7 months after I was dx (my WBC was normal then) I was off meds for 3 weeks while I was switching meds and oncs and my WBC went up to 50,000. I think there is also a chance of getting mutations if you don't treat the CML , I'm not sure about that, others on this board will know more than I.  Please let your dad know that we all know how he feels, we all wish we didn't have to take meds but there really is no other choice. Please let your dad know that we are all in his corner.

Judy



#15 deborah53

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Posted 25 February 2012 - 06:02 PM

Hi Christa,

I am sorry to hear that the Novartis site was not helpful-- and I can totally understand your father's reluctance to pay out that kind of money every month. It caused me an incredible amount of stress as well, and that was even though I did receive at least some assistance for the first 3 months. Now that the initial assistance is over, I am still out of pocket the full yearly amount my insurance allows- $6000, not small change!! I did look into the program I was on for the first 3 mos, and unfortunately it is not applicable to those on Medicare. What a shame!

As for the question of waiting and watching the WBC count-I would be very surprised if Dr. Talpaz would agree to this. The WBC count is only a very small part of the overall CML picture. The key to successful management is to get the bone marrow stem cells which eventually mature into WBCs under control, and the only way to truly know if there is good control is with PCR results. Early and deep responses with low PCR results (less than 10% on the International scale) within the first 3 months are correlated with much better overall problem free survival. I would not advise taking risks with this, and please have your father ask whether it is worth the chance.

As for timing with Tasigna- it is a total pain, but what I have found works best is to eat breakfast reasonably early- then fast for 2 hrs, and take T late am, then lunch one hour later. So... no snacking from about  9am to noon. Then I take my evening pill at bedtime- just wait till 2 hours at least after dinner. It usually works pretty close to 11am and 11pm. It is the no snacking at all for that period of time before and after the medication that can be hard- and even more so on holidays and when there is a party going on!!

On another note- I cannot tell you what a difference it made to my outlook and care, by going to the UofMich and seeing an expert. My local oncologist, who has an excellent reputation  made so many decisions that were counter to the national CML guidelines, and consequently my PCR at 3 months was not what it should have been. The dosing of the TKI drugs can be tricky and I feel strongly from my experience that it is better to have an expert's guidance until everything levels off and you are on a stable dose. Even now at 5 months from diagnosis, I am on only 450mg, and if the side effects stay manageable, I will move up to full dose- 600mg next month.

I wish you and your father all the best- good luck with everything.

Deb



#16 NotJack?

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Posted 25 February 2012 - 07:40 PM

Hi Christa,

Most people take the first pill as soon as they get up, then you only have to futz around in the evening.  You are supposed to have 12 hours between, but Dr Druker said that based on the half life of the drug, that it should be fine anytime from 8 to 14 hours between doses.  (the quote is within this forum somewhere) (I think that if you put Dr Druker into the search box you will be directed to the quote)   I try to stick as close to the 12 hour interval as I can, but it is nice to know that there is some leeway.  Some times I wake up in the middle of the night, and if it has been longer than 8 hours since my last dose, I take my morning dose then.  Then when I wake up I can have my coffee right when I get up, rather than having to wait an hour.  The dose packets make it fairly easy to monitor the doses.  Another of us prefers a 10 o'clock pill time.  Then you aren't hitting any traditional feeding times.  Don't know anything about magnesium, I just take a multivitamin.  Regarding the Novartis site, in September, they had a three month free deal.  It had nothing to do with income,  it was a promotion that both of my oncologists offered me.  I would ask both Dr's for the Tasigna trial offer and see if you can't get hooked up.  I did not have to submit any financial data to receive this promotion.  This would give you time to look at all of the options available to you. 

Lets see, what else.  Get the cancer center to contact the Novartis rep directly--Dr Talpaz if possible (or his secretary--the rep will know them well).  If you have trouble there, I may be able to hook you up with the rep from MN.

This for profit health care really sucks if you actually need to use it.  We need national health insurance at the very least.  The government admin cost is around 3% for the VA,  the insurance companies admin is over 30% with a good share of that going toward denying care to people that need it.  I had health insurance, BCBS, but they denied me coverage for TKI drugs.  Actually they had them covered -- they just had a 100% copay.  People that I know of that chose not to have health insurance had their entire bill paid by taxpayers when they got cancer.  Sorry, I digress. 

You have to call these people incessantly until you get the three month starter pack.  The sooner that you are on the drugs the better.  But he might as well get his baseline EKG done, if he hasn't already, and his allopurinol and anti nausea drugs in hand.  I never needed mine, but I was told that they come in handy.  Sorry to rant, I guess that I needed to get that off my chest -- I am going out to play hockey now, that usually calms me down.  Take care,  Jack 


Jack


#17 Trey

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Posted 25 February 2012 - 09:58 PM

The issue of waiting to start a TKI drug until the WBC gets "high" is not prudent.  The sooner he starts, the earlier the leukemia gets under control, and the less likely it will get out of control. 

For CML there is no "watch and wait" treatment.  That only applies to some other less deadly leukemias.  CML is deadly if left alone.

There is one true fact for treating CML: Get on the drug.  Stay on the drug.  The drug saves your life.



#18 Chris1579

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Posted 25 February 2012 - 10:40 PM

Thanks to you all - your support and information is SO helpful I can't even put in words how much - and I usually have plenty to say - LOL  It has really been helping my Dad - I have been reading each and every post to him -  it helps him to hear what others that have the CML, have to say.

Dr. Talpaz did hook us up with the 3 months "free" of Tasigna - but  Blue Cross was NO help and said we had to talk to the manufacturer as long has they offered a "discount"  than you move to the donut - hole thing (I would like to know the idiot that came up with the donut-hole thing) - we talked to my Dad's accountant and he will not be a candidate for assistance, he is retired but  he has some rental income on top of his S.S. so this will make him a non-candidate - so providing that Blue Cross and Norvastis are not telling us some BS it looks like around $10,500.00 out of pocket for Dad - I think this is a driving force behind him putting the script on hold - besides it REALLY  is so much to get your mind around (the CML is bad enough but now the money issue, good grief) - not to mention he is mad because he has had Blue Cross his entire life, paid in - his entire life - now he needs to use the insurance at age 74 and guess what...well I can't use the language that my Dad used, but you get the general idea - I get it, I don't like it, but I get it

Few more questions for you guys - sorry - does anyone have a hard time sleeping, even with being real tired?  Has anyone had any memory problems - my Dad's memory is like gone, not sure if this is shock, old age or part of the CML?

Lastly, my Dad really doesn't "feel" sick just real tired but yet can't sleep so he is SO WORRIED (which could be why he isn't sleeping -LOL)  about the side effects of Tasigna - I have read about the rash, dry skin and scalp burning - is that like the worst of it?  I know it is different from person to person - but since he really doesn't feel sick yet because it has been caught so early - He is worried that the med will make him sick - any thoughts in this department?  Also, what did you do for your side effects, if anything.

My heart goes out to all of you and your loved ones -  God Bless



#19 Judy2

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Posted 25 February 2012 - 11:09 PM

Hi Christa,

The money issue is a real stresser but unfortunately if your father doesn't take his med. all the money in the world will not be of any good to him. Christa, I would call HealthWell, I don't know what your father's rental income is and I can't remember what HealthWell's income cap is but it is worth a phone call. The worst they can say is he doesn't qualify. People complain of brain fog while on some of the TKIs, I never had it before I was on med but everyone is different. As for sleeping I slept all the time except when on high doses of steroids, again everyone is different. I was only on Tasigna for a very short period of time, I had a very bad rash with swelling so others who are on Tasigna will be able to answer the side effect question better than me. I will tell you, though, that a lot of the side effects ease up over time. If you are able to get some of your father's numbers, such as WBC count, PCR results and number of +PH chromosomes and post them Trey and others will be able to help you understand your fathers condition better. Christa, your father is very lucky to have a daughter like you and don't forget to take care of yourself!!!

Judy



#20 NotJack?

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Posted 25 February 2012 - 11:44 PM

Christa,

His lack of sleep is probably more the $ stress.  For me the financial stress even trumped the cancer stress!  I was looking at over $100,000 in drugs a year,  and my lovely BCBS would cover some of the bloodwork and office visits for 10,000 a year in  premiums and out of pocket.  Now my total outlay after all is said and done is between 10K and 11k.  It is what it is.  I got my passport ready to go to Canada or France, while I was trying to resolve the insurance - just in case.  I get your dad's pain.  But at some point, you have to give up on the being upset, concentrate on the treatment, and lower your stress level.  It sounds as if he can afford the 10.5K this year.  He can always look at alternatives down the road, but right now he seems to be in a place where he can breathe. 

The Tasigna seems to be different for everybody.  I had a little rash, lost a bit of hair, had/have some bone and joint pain,  oh, and some headaches.  But, this stuff is keeping me alive, and I am still able to play hockey with my son, help him through college, teach, and help out my friends when they need it.  The side effects are manageable for me without more drugs.  I hope that your dad starts treatment soon, that is the important thing.  If he is on half the usual dose he already has 6 months in hand.  I wish you, your sister, and your dad strength and perseverance, this first month is a lot to take in! 


Jack





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