11 replies to this topic

[Frogiegirl]

I am newly diagnosed with CML and was curious why BMT's are not done more often?? I just figure if its the only cure why are we paying for this pricey TKI's and not going for the BMT's??  I am on tasigna 300mg twice a day and the cash price is over 10k a month. I'm lucky to have insurance but wonder why we don't go for more BMT's, Tasigna is a second generation drug and I worry there is not enough data on tasigna to know long term how it effects your organs. If over the years it causes damage then the BMT is off the table? I hate sounding Nieve I understand that they are tricky and finding a match can be very difficult( I just got put in the registry to find an unrelated donor) None of this is easy on the body we are constantly at war with CML but I am one who would rather go for a cure then be on a pill for the rest of my life waiting for the next blood test to come back not in my favor! maybe I'll change my mind someday, but am very thankful there is a TKI in pill form for the battle against this ugly cancer. were extremely lucky to have a cancer that can be treated with the TKI's its just hard not to think of being cured:)

[GerryL]

I'm not going to comment too much on BMTs as people like Tex from the BMT forum are more knowledgeable. But my doc who does a lot of BMTs commented to me that I probably wouldn't like the cure - as in a BMT.

If you're looking to have a BMT than you'll need to find out as much info as you can, so a visit to the BMT forum on this site is a place to start.

[pamsouth]

Frogie,  That is exactly what I said when I was diagnosed in 2005 at age 57 years old.  Actually I flew from Indiana to MDAnderson Tx.  They sent kits for Transplant to my 4 siblings.  Two matches my oldesnt sister who is now 77 years old and in bad shape and my youngest brother was a match he died last year at the age of 61 years with congestive heart failure.

My daughter who was a nurse in ICU for newborns, was totally against the transplant as she read up on all the things that could go wrong.  Lots of horror stories.  But I didn't want to be on these TKI's for long because I was getting older and knew the longer I was on these drugs the more toxicity damage they would do to my organs.  I will be 66 years 1/1/14 and my kidneys are failing and had about with my heart a couple of years ago, liver slighly elevated high iron levels, low on vitimins.   You won't get a doc to admit to their tki drug causing kidney desease.... 

Anyhow I knew I would have to travel and stay in TX no one here in Indiana was going to do any transplant with a donor.  In retrospect my son-in-law is a GI doctor here and I think he talked to all the doctors I went to, to discourage the transplant.  My daughter was very busy raising three children and it takes about a year after transplant to recoup, or you need a full time caretaker, and she was much to busy.  All though she did not say that.  But we had taken care of my mother three year before she died and my daughter filled in for us when we took vacations and she knew it was going to be a lot of work and a lot of things could go wrong.

Also I believe I would be much more valuable to the drug makers and doctors on a TKI for the remainder of my life than a transplant. 

If had been a few years younger I would definitly went for the transplant.  These TKI are no picnic and long term toxcity sure to come.  The TKI are rushed thru and pushed thru and approved by FDA.  Not much Data, We are the guinea pigs.  And I am told to shut up and be greatful.

t

[Trey]

It is a risk vs. rewards equation.  The risk with the TKI drugs is small, and the probability of success is high.  With BMT, the risk is relatively much higher, and a cure is not always delivered since there are relapses due to difficulty of killing off all CML stem cells.  A BMT for CML is often less successful than for other leukemias since the stem cells for CML are at a higher level in the blood-making chain than for other leukemias, so they are harder to kill.

Overall, TKIs work so well for the vast majority of people that anything else does not make sense except as a last resort.

[Frogiegirl]

Pamsouth, I am so sorry to hear of your brothers passing and your sisters health decline. Life sure does throw us some curve balls. I keep getting this feeling that the BMT is the way to go for me. I know it wont be easy and lots could go wrong, but ill never be this young again and perhaps be strong enough to endure the process?? I meant with the BMT team at the huntsman cancer institute where I am currently being treated and they told me they have a 85-90% success rate and are good at what they do. I have two boys 9 and 4 and I feel I will never be this young and strong again. Some would argue that perhaps those are not neccesarily what pulls you through, but once the damage has been done and the TKI's no longer work for you what choices are you left with. They told me they do a rigorous test on all your organs to make sure you are able to endure the BMT.......so my point being I don't want to wait ten years only to find out the TKI"S did my organs in. besides I think Novartis is ridiculous to think the average person can afford their drugs! haven't they made enough. I know the company does good things but squashing the little people who have no choice but to sucum to paying for their meds to live is ridiculous. Sorry little ranting going on.......

[CallMeLucky]

You are assuming that post transplant you will be healthy again.  Transplants are very difficult on the body and often people live with side effects from the transplant worse than  TKI drug.  Read up on graph vs host disease.  Many protocols now call for TKI drug post transplant.

Transplant is not a guaranteed cure.  A transplant is a last option and I think you would be challenged to find a responsible dr who would agree to transplant you if you are responding to TKI drugs.  5 yr survival with TKI is over 90%.  Most people who do well on the drug can expect to live their natural life span.  A transplant is no where near those odds.

It's hard at first and TKI is not always easy but you will learn to accept it.  A transplant should be your last option when all else has failed.  Hope you never get to that point.

[Tom1278]

A BMT is a procedure with many, many more risks than TKIs.  I'm relatively young to have CML (diagnosed at 33, now 35), and I'd frankly never consider a BMT unless I failed all the TKIs and had no option.

Also, one of the the reasons my docs put me on Gleevec vs. a second generation TKI is that there is much more long-term safety data on Gleevec vs. the other drugs.  Since I could potentially be on Gleevec for 50+ years, this was an important consideration.

[Frogiegirl]

Hi Tom, And callmelucky I too am young(eeer) 31 And I guess I am just chomping at the bit for a cure. I have a getter done personality and should probably better inform myself. I had the consult with the transplant doctor and his team and they did go over the graph vs. Host issues and it definitely has its risks. I'm kindof confused as to why my doc put me on the 2nd generation drug, but at diagnosis I was told I had 70% of the philidelphia chromosome and was nearing accelerated phase. The first doctor I saw wanted to start me on gleevec right away. but I chose to be treated by the more" world renowned" doctor which I can see may have been a mistake??? Its really hard to say. I also wanted one more child and this has definitely put a damper on things. I  keep thinking "why am I digging this financial hole for my family" with the high cost of the TKI despite the fact that I have excellent insurance. meeting your deductible right off the bat is going to be  challenging. Four weeks after my diagnosis I was also diagnosed with severe R.A which my doctor said not to worry about treating until I am symptomatic.....which to me is funny because I am always hurting so how the heck will I know when that will be????  I really appreciate you taking the time to respond to my questions , even if in your mind your going "who is this dumb girl"

[Tom1278]

If you were close to accelerated phase, then the 2nd generation drug was probably your best option.  I was 97% Ph+ cells at diagnosis, but only 2% blasts, so I was in chronic phase.  I also had no symptoms and no spleen enlargement, so my disease was caught relatively early.  (Disease phase is mostly determined by % blasts, not % Ph+ cells.)  Many people are near 100% Ph+ cells at diagnosis.

[Frogiegirl]

Tom, that's very interesting they said I had no blasts?? All of this is so new:(  I hope I didn't misunderstand them, which I guess is easy to do when you are told you have cancer. to me CML was just three letters of the alphabet. Now its the only thing on my mind. I hope I can live a relatively normal life span. My mom is devastated as we already lost my big brother years ago in a car accident. She really cannot outlive another one of her children:(

[CallMeLucky]

Phase is driven by blast percentage, not PH+ chromosome percentage, as was stated in other post, typical to be 100% PH+ at diagnosis.  Sorry if you are getting some mixed or confusing data it is a lot to take in.  If they said you had little to no blasts then you were in chronic phase, which is good.  Ask the doctor for confirmation of stage at diagnosis, if they say "nearing accelerated" ask for an explanation of what specific factors made you "nearing" it.

As for second generation drug, many studies are showing that frontline use of second gen TKi is better for long term.  No one knows for sure what these drugs will do, each person responds differently.  One of the things that you will have to come to terms with is that you have a significant illness, so the ship has already sailed to an extent.  Your job now is to choose the best treatment that will give you the best quality of life for the longest amount of time.  It is projected that people can live greater than 30+ years on TKI drugs, and no reason to believe if you were doing well for 30 years something would suddenly change.  You are playing for the long game there are no quick results with CML.  TKI drug offers you best chance at survival with the best quality of life.  BMT has all kids of side effects and as I mentioned before to think that you would just suck it up and get through a BMT and then be perfectly fine is unrealistic.  That doesn't make you dumb in any way, we all though this way.  You will learn more about BMT and you will see it is not the preferred option. 

As for cost, 1 ten TKI drug isn't much cheaper, yes Gleevec will go generic soon and cost will be lower, but nothing says you can't change later if you want to.  I also fretted about the cost but like you had decent insurance.  I was always thinking what would I do if I lost my insurance, and then I realized that was silly.  Right now I have insurance and my treatment is going well, I will worry about not having insurance should that day come.

[tazdad08]

I too have that question. I do understand that it can be a hard and risky procedure. But, I also KNOW that the two years that I have been on these drugs are taking a toll on my body