20 replies to this topic

[MLMZZ55]

I FOUND OUT ONE MONTH AGO THAT I HAVE CML.  I HAVE NOT BEEN WILLING TO ACCEPT WHAT THE DR.'S HAVE TOLD ME.  I HAVE HAD A BONE MARROW BIOPOSY AND  THEY HAVE MADE IT VERY CLEAR THAT I DO HAVE CML.   I HATE TO TAKE PILLS AND I DO NOT WANT TO HAVE TO TAKE PILLS FOR THE REST OF MY LIFE.  MY DR. IS NOT WILLING TO EVEN DISCUSS A BONE MARROW TRANSPLANT SO I AM TRYING TO FIND  SOMEONE WHO WILL AT LEAST TALK TO ME ABOUT A BMT.   THE PILLS WILL ONLY NURSE THE DISEASE.  THE BMT IS THE ONLY CURE.  I DO NOT HAVE ANY CHILDREN AND I AM NOT MARRIED.  I AM 62 YRS. OLD.   I HAVE BOUNCED BACK AND FORTH WITH WANTING TO DIE OR TRYING TO ACCEPT THIS.  I WOULD LIKE TO FIND SOMEONE WHO I CAN TALK TO TO HELP ME COPE WITH THIS CRAPPY HAND THAT I HAVE BEEN DEALT !  CAN ANYONE HELP ME?   THANK YOU

MARY LOU

[hannibellemo]

Hi, Mary Lou,

I'm sorry you have had this devastating diagnosis and that you are taking it so hard! It takes a while to come to grips with reality but the reality is that a BMT is not necessarily a cure, you may develop GVHD (graft vs host disease) where your body tries to reject the engrafted immune system with what can be some very frightening and life threatening side effects.  You may still have BCR-ABL in your blood after the transplant and still have to take a daily pill. Not to mention the chemo and radiation to prepare your body for BMT. The transplant may also just fail, where you will be left with no immune system at all. There are very good reasons why a BMT is a last ditch effort for this disease. But don't take my word for it, there is a Bone Marrow Transplant discussion board on this site. Ask them about it.

The pills will give you your best chance at a normal life. Yes, you may experience some side effects but for the most part those can be managed. Unfortunately, this is not a disease that will allow you to stick your head in the sand. If you do nothing you will eventually die. The pills do way more than just "nurse" the disease they reduce the cancer in your blood.

If you want a visualization of how well they work, check out the "Living With..." list and compare the number of discussions on "Living with CML"' compared to any other "Living With... " There are over 3,000 discussions vs 571, the next highest on one of the other "Living With..." boards. That's because these pills work and we stay alive.

There are others on here who may speak more eloquently and perhaps, kindly, and yes, you got dealt a rotten hand but our hand is pretty darn good compared to others. Your life can continue to be damn good if you just let it!

Pat

PS All caps are very difficult to read could you turn off your caps lock, please.

[mikefromillinois]

Hi Mary Lou,

I'm 60 and I was diagnosed with CML last summer.  It is a wild ride the first couple months adjusting to everything (physically & mentally), but things settle down eventually.  In the GREAT majority of cases people with CML will live out a normal life span and NOT die from CML.  It is VERY manageable with meds.  I take one pill every morning and that's it.  My side effects are minimal and really a minor price to pay for good health.  You can expect to have a lot of blood drawn the first few months, but once your "blood levels" normalize as the meds do their work you can expect only quarterly doctor visits.  My lifestyle is exactly the same now as it was before my diagnosis.  The first few months I worried about things all the time...now it's as if I have to remind myself that I have leukemia.

Please take advantage of the information on this discussion board and visit regularly.  Some of our "residents" here are more CML experts than many of the docs out there.  Ask questions, share your experiences, and educate yourself on the disease.  As you learn more you will realize that CML isn't as scary as it seems to you right now.

I have always said that there are few people on this earth who do not benefit from a therapeutic relationship with someone they trust - whether it be a family member, friend, therapist, clergy person, or someone else.  If you ever feel overwhelmed please talk with someone with whom you are comfortable with.  There are also many support groups out there for people in our boat.

By the way, nowadays, according to the CML experts, BMT's are really a last resort.  The stat I seem to remember is about 95% of folks can be treated without one.  (Don't quote me on that...my memory isn't as sharp as it used to be!)

A good friend of mine, who developed heart problems and diabetes at age 50, recently told me how lucky I was.  He knew that all my life I was healthy and NEVER went to the doctor.  He suggested that but not for my CML I never would have went to the doctor and eventually I would have gotten sick or died from something (like a heart problem) that had gone undetected.  He said that now I am forced to see a doctor regularly which for someone 60 y-o is a GOOD thing from a preventative standpoint.

Anyway, hang in there and welcome!

Wishing you good health and many happy days...

Mike

[GerryL]

Hi Mary Lou,

I think all of us felt we got dealt a "crappy hand" in the beginning, particularly the women who are of child bearing age and want to have children. I can't talk to you about the BMT process and the complications that brings with it, but there is another forum for BMT where you should be able to find information. As for wanting to die, though the end comes fairly quickly (within a couple of years), from what I understand it is quite painful towards the end. The problem will be once you get to the stage there is no going back.

I'm in my mid 40s and was diagnosed 18 months ago and take my Gleevec every day. For me I believe they are getting close to finding a cure and I want to be alive for when that happens. There are some irritating side effects from the drug, but it doesn't stop me from getting on with my life and doing things that I want to do.

I'm not sure if I've been of any help to you, but we do have a couple of people on here who are going through the BMT process due to the TKI not working for them and they may be of more assistance regarding a BMT.

Take Care

Gerry

[Susan61]

Hi Mary Lou:  Pat explained it all so very well to you.  Only 4 weeks into the disease, and most likely you are reading everything you can get your  hands on like all of us did.  There has to be a reason why your doctor is saying he will not even discuss a BMT with you.  I was 52 years old when I was diagnosed, and I am now 64.  That was in 1998.  All the doctors wanted to push me into a BMT in the beginning, until I saw one old doctor who worked with CML for many years.  He told me not to even consider it.  He said I do not think you will make it, and if you can try this pill that has been an amazing breakthrough why don't you go that route first to see if it works.  Well it did work.

     We have so many people on here taking different TKI drugs because Gleevec was the first one, and that is the one I am still on all these years.  Later on when they knew how to treat CML, newer drugs came out.

    I would get started on whatever TKI he wants you to take, and then join in here with us to let us get you through the process until you understand how it all works.  CML is not the death sentence it was years ago.  Just ask us anything you want to.  Like I said its only 4 weeks, and try not to absorb too much information at once or it will just get you so confused.

    Welcome to the group if you want to join in.

Susan

[Trey]

Here is some information to consider about bone marrow transplants (BMT):

http://community.lls.org/docs/DOC-1375

It is simple, really.  The drugs will almost certainly allow you to live a relatively normal life.  There is not much else worth saying about the subject.

[luvmybees24]

Mary Lou,

I was diagnosed in November 2011. I am 35 years old. After 4 months on Tasigna my only side effects are slightly thinning hair and a little dry skin. My CML is in a major molecular response which is awesome. I am doing VERY well. These pills are amazing. Give them a chance, you CAN live a normal life on them. To me a bone marrow transplant would be a last ditch effort. It's pretty brutal on your body and there is no guarentee you will survive it. I think you have a much better chance on the pills. Good luck to you and believe me, I understand how scary it is to find out you have CML...BUT you are lucky to be alive during a time where there are drugs available to control the disease. Everyone told me in the beginning "if you had to get anything, CML was the cancer to get" and it's true. I'd rather have this than any other form of cancer, honestly.

Laura.

[clemsoncash1]

Just a quick note, I am 10 months post SCT for CML (ALL blast crisis) and transplant protocols now tell you to stay on TKIs post transplant, and I am on at least 15 other pills a day, so I would not recommend the transplant as a way of avoiding pills.

[NotJack?]

Hi Marylou,

The reason that no one will give you a BMT is because a good doctor will not amputate your arm if you have an infected finger,  they will give you antibiotics.  There are people who need BMT's, and for someone who doesn't to take a place away from someone who does is not humane or compassionate.  Read the blog below for good, current, information (thanks again Trey).  A lot of the info on the web is outdated and wrong.  I assume that your purported choice of treatment is fostered by bad information of ignorance.  As said by my friends before, we are here to remedy that and help you through this, as others have helped us on here when we needed good facts and support.  That said, here is the "tough love" part:

It would be extremely unwise to pursue your course of action.  To be given a chance at a long life, and to throw it away is insane.  If you want to think about this uneducated and unrecommended (listen to the docs) course of action,  it is your life.  The vast majority of us here have chosen to watch our children grow up,  read, enjoy time with friends, enjoy music and theater, embrace life, and see what the next sunrise brings.  You should start the drugs and see if they are as bad as you think.  Then, if you want to die instead of taking a drug daily, have at it.  I do not mean to be unsympathetic, just matter of fact.  I respect the people, some of them on this site, who have offered themselves up for clinical trials. Some of these have succeeded, and some have failed, but their sacrifice and love of life has gifted we who have CML to have a targeted therapy that gives us the opportunity for a normal lifespan.  I am 56, play hockey and rugby,  am learning guitar and jazz piano,  am putting the finishing touches on my pottery studio, and am tutoring refugee children from Myanmar in math and reading.  This is what I choose to do with this gift from strangers (I won't blame them for still having to work).  Here is hoping that you make a choice that you will not regret, and I wish you all the best, Jack    Good info:  http://treyscml.blogspot.com/

[CallMeLucky]

I support your desire to learn more about the transplant process.  Unfortunately, what you will find is that it is not the "cure" you are thinking it is.  Assuming you can find a suitable donor, you will have a very difficult road ahead of you.  The transplant itself is very risky.  They will destroy your entire immune system with chemo and radiation in order to replace it with the donor immune system.  During this time you will be defenseless against every germ out there.  If you get an infection it could easily kill you.  Once you get past the initial transplant you will have to begin taking immune suppressing drugs, lots of steroids and other types of drugs.  The main thing you have to watch out for is something called graph vs. host disease.  GVHD is when the donor immune system turns on the body.  If you think about what you have heard and read about organ transplant, one of the biggest issues is that the body does not accept the new organ and rejects it.  GVHD is the opposite, you have put a new immune system in the body, it doesn't recognize any of the organs or tissues and it turns on them.  This can vary from minor and annoying to unbelievably problematic, to terminal.  GVHD can make CML look like a walk in the park.

Other factors to consider are that CML occurs very high up in the chain of stem cells in the body and quite often the transplant is not successful in curing CML and the patient relapses.  So you could go through 2 years of hell, have chronic GVHD and still have CML.  The "cure" is not guaranteed, in fact it isn't all that likely.  As was mentioned in another post, protocol now is to keep CML patients on TKI drugs post transplant to try and mitigate the chance of relapse.

Many people do survive the transplant and some are cured but I don't think anyone comes away from it without paying a price in one way or another.  You got dealt a lousy card, plain and simple.  I think you would be hard pressed to find someone who went through a SCT who wouldn't tell you to only do it as a last option.

No one likes being sick, I'm 39 years old, have two little kids to support, the last thing I want is a chronic health problem.  Unfortunately it is not my choice.  So I take my pills and my disease is well under control.  I have some side effects, but I still work full time, spend time with my family and pretty much everything I did before I got CML.

CML used to be a death sentence, today it is a manageable chronic disease.  Take your time to deal with the trauma of the diagnosis, learn as much as you need to learn and then make your decision.  Just remember, once you go to transplant, there is no turning back.

[hannibellemo]

Thanks for weighing in! You can say it better than anyone of us can!

Hope things are going well for you!

Pat

[susantheresa]

Hell there and welcome.  I usually try and offer support, however, at this time, I think that your heart is ruling your head and it is so difficult to make rash choices when your are so confused.

I was diagnosed with cml inMarch of 2004. I immediatly was placed on Gleevac because at that time, G was the only available drug. NO Tasigna, no Spyracel. Just Gleevac, or Interfon. Thats it. 8 month's into my therepy, Gleevac was failing me.  I DONOT like to talk about this because I NEVER want anyone to think because it failed me, it will fail others.  It just happened that way.  In 2004, they were in CLINICL TRIALS, testing AMN103 and BMS247.  Guess what.  They are NOW< TASIGNA AND SPYRACEL.  I was offered those drugs because they were showing tremendous progress in helping Gleevac resistant patients have a complete cytogenic, molocular and hemotologic response, Hopeing that I could help myself and othes I tried to enroll in the trial, Guess what?  I was too late. I couldn't enroll because the time had expiredd by only 3 days.  They have very strict protocols for clinical trials. Because I progressed rather quickly to a Blast crisis and I pretty much heard death at my door, Transplant WAS MY ONLY OPTION.. I wished that Gleevac didn't fail me and that I had the opportunity to try Spyracel and Tasigna because the knowledge that the complication from the transplant could kill me as opposed to taking my pill everyday looked better to me.  I didn't have that choice.  I never wished that I ws dead, only prayed that whatever gods will for me was that he (God) showed me how to have grace and dignity and strenght and I bartered with him, telling him everyday that i will be strong, just please don't leave me. 

The process was grueling, Chemo every 6 hours round the clock for 6 day's.  No immune system, Grave vs Host disease of the eyes, skin and mouth.  Steroids, anti-rejection drugs, 12 pills a day for almost 2 years. I developed aan infection and lost my hearing permmanantly in my left ear, never for it to come back.  so what, there is too much noise in the world anyway.And, after all of that a relapse.  Had to do it again, 6 month's later. DLI. Frozen stem cells, donor lymphacyte infusions. They worked fevirshly on me, and I stayed strong.  Full of faith and hope.  It all worked out for me because April 27 of this year, I will be 7 years post transplant.  There is so much more but I hope youcatch my drift.  I left my job after, work part time as a Waitress at this cute little breakfast nook here at the beach.  I forgot how lucky I am to live at the beach, I volunteer my timehelping others at Gildas club, support the LLS as a first connections volunteer, fundraise at light the night, and when I go to visit my Brother who lives miles from my Hospital I go on to the Transplant floor and visit patientsinhopes that i can be of serice to them.  I dream now in technicolor, not black and white.  I have hopes and dreams still and I SIT IN GRATITUDE EVERYDAY. The cchoice wasn't mine not to take that pill everyday.  My body didn't let me have that option.  Take thatpill.  Be gratful it is out there for you and the others on this site. Hold onto your hopes and dreams because when you have to sign that living will and advance dirrective at admission time, you will wish that you had that pill. I still have in my medicine cabinet that bottle of Gleevac with 1 pill in it so that evertime I open the cabinet, I look at it and NEVER FORGET that pill saved my life, even if it was for a short time.  I wish you the very very best on your journey.  Remember we make plans ans sometimes God laughs.  His will, not our's be done.  Blessings Susan M

[CherylLynn]

Mary Lou

I am 14 months post transplant for CML blast crisis...getting this diagnosis sent my world spinning back in Nov 09...I so wanted to be one of the "lucky ones" who would do well on the medication - but alas I was not - I went to transplant in Jan 2011 - without a fully matched donor doing a trial protocol because there was no donor on the registry to match my strange DNA...I have been very lucky in that I have had very little problems - except a bout of cold sores that lasted 7 months...if you asked me today if I would do this again - I'm sure I would say yes - because I have been in remission now for 14 months - HOWEVER - with that being said - it is a long and hard journey...I was 45 at the time of transplant...and it took a huge toll on my body...I had a feeding tube and lost 45 lbs including alot of my muscle strength...for many months afterwards I could not get in or out of the shower on my own - part of the reason they are not suggesting BMT for you is because the TKI meds work very well for the majority of people...the other reason I believe has to do with your age...I do not know your health background - but at my transplant center (Hamilton, Ontario) - they do not transplant anyone over the age of 60 - fully myleoablative transplants are not usually done on patients over 55 and reduced intensity transplants often end up in failure because they are often not strong enough to kill of the leukemia...

I know that the prospect of taking a pill everyday for the rest of your life seems daunting but having a BMT might just end your life pre-maturely - I was very lucky to have made it through with little to no gvhd...but had I been able to stay on the meds and done well I would have...

Cheryl

[Susan61]

Thank you for sharing:  May you continue to do well in your post transplant treatment.

[Susan61]

H:  First let me say that I am so glad your doing well all this time, and we need someone like you to explain what its like to go through this whole process.  Someone who has gone through it all is the best spokesperson you could have.

I hope this helped Mary Lou and many others trying to decide which way to go.

Susan

[tiouki]

hello Mary lou,

Sorry to hear that you got this bad news.

I am 22 and I am taking a pill every day for 6 months now.

I have no side effects my life is totally normal.

I think transplant is a bad option for you, CML is very well treated with the pills the side effects are limited AND manageable. BMT is hard AND risky.

Good luck!

Pierre

[markmendonca]

hi mary i like you and everyone with cml here have gone or is going throw hard times at frist my name is mark i am from boston mass. i have been on meds for 6 months .. { tasigna } there are so manny great people here. smart really  smart people . i will give u my number to call i hope they don't take it off , its hard for us we need to talk on the phone .. this is for anyone that wants to talk ..

Message was edited by: Abena-   For the patient's safety, the phone number was removed.  You may send him a private message to obtain his phone number in a more private setting.

[markmendonca]

thats great jack well done i hope u r doing well we need to talk on the phone agine soon be well my friend...

[Teresabourgeois]

You have the right to yell and type in all CAPS!  I remember feeling the same one yr ago when I was DX.  These boards are a great place to educated yourself.  I don't always type but just come here to read.  I'm 50 and have other crappy autoimmune diseases too.  However, hearing the words YOU HAVE LEUKEMIA will forever change your life.  My thoughts and prayers are with you.  Time helps with coping and excepting this strange rare leukemia.  Who would have thought this would happen?? 

[Melanie]

I understand where you're coming from. I was dx in May of 2011 and have been through all 3 of the TKI drugs so my onc sent me to the Mayo Clinic for a transplant consult. Turns out no sibling was a good match, but there is a possible good donor in the registery. I was lured to do a BMT because I wasn't tolerant to the drugs and because of the possible "cure". I've always been healthy, except for the CML critters in my blood, and I do have a mutation, but not a bad one, so I felt the transplant might be a good fit. Did a lot of research and then the transplant director told me the mortality rate is 15% for my age (57), and if I was his wife, he would try doing another round of the drug therapy again and again before resulting to a BMT. That was all my husband and I really needed to hear and so now we're starting over with Tasigna. We're determined to find a drug that will work for me...We'll stay the course, keep reading through this board for information, push through the side effects and the myeloid depression, until there's absolutely NO other alternative.  A transplant will be the very last option. When the director of transplants at the Mayo Clinic tells you that he would not put a loved one through a transplant, it makes you reconsider your options. Hope this helps.  Melanie