25 replies to this topic

[Johnmontoya923]

Hello everybody,

Just like some of you, I was recently Dx. with CML. My whole life changed in matter of hours after doing a blood work up. My symptoms were bruising with large bumps on my skin. My wife works @ the hospital where we did my blood work, so she had access to my results right away. She called crying and I knew something was wrong and had an idea about what she was about to say. So I held my breath while she cryed and then she began telling that most likely I have cancer. My white blood count was over 359000. We didn't know what kind at that time, we just knew something wasn't right. The lab results said that I had cancer cells floating in my blood and spreading. We had a call from a oncologist soon affter all that, they said we needed to go in right away, and the next thing we knew, I was laying on a table with my ass hanging out and getting a thick needle drilled in my bones. I cryed and cryed really loud while I held my wifes hand, she too was crying with me so much that a nurse had to come in and console her. I will never forget that moment. Next I was given a high dose of oral chemo- therapy to bring my WBC down. It worked, but as some of you guys know, there were some side effects that came along with it. I was bed ridden for two week, fever, mouth sores, N/V, ect....... I then was switched to sprycel, I think i had a worse reaction to sprycel than the Hydrea that I was on. I felt my head wanting to explode, vomiting all night with major night sweats plus more.....

Talk about wanting to die, I really did at that moment. I saw myself blowing my head with my 9mm, but I could not do it. Leaving my wife and kids was not an option, I love them so so much! We are now a closer family from all that has happened. Its really strange how things work out. I still have side effects from the sprycel, but everybody says it should get better as days go by. I dont understand how i can take chemo the rest of my life, when that damn bag says," Caution Chemo therapy Agents, with a Bio Hazard sign on it. It doen't make any sense to me, I have issues taking it every night. My only worry now is my caregiver, who, is my wife. She is the strong hold of the family, she struggles with many things. We laugh and say things like," she is going to write a book on how she survived Autism, down-syndrome and leukemia. Yes, its true, my son has Autism, my daughter down-syndrome and I, Leukemia. Wow! Lots on her plate. Does anyone have words of wisdom for my wife?

[Trey]

Here is something both of you should read:

http://community.lls.org/thread/2600

The "chemo bag" thing is caused by lawyers with no sense.  It is not even accurate.  Our CML TKI drugs are NOT chemo. 

For most of us, life returns to relative normal over time.  She will come to view the down-syndrome and autism as more of a concern than your issue after a  year or so.  Her book will end happily.

[ChrisC]

Hey John & wife,

Hang in there: it does get better! And better. And better! Okay, you're right, maybe that's not a big help right now, but as Trey says, for most of us it really gets better. Plus, we learn to live with some things we can't change, and we grow stronger and wiser, and maybe grow a thicker skin when needed. (Folks don't always know how to respond to us with our new health situations, and some less-than-wonderful things sometimes get said out of ignorance. Forgive them, maybe see them again later. Or not! You are fine.)

Everything is overwhelming right now, everything you feel is valid, but do believe that it will pass, and that some sense of normal life will return, with some limitations perhaps, perhaps faster than you can imagine.

FWIW, I started out with a higher WBC (459K) than yours, and within 11 months — first seven months not happily, on-and-off Gleevec, then after four months on Sprycel tests showed the CML was undetectable! Sprycel works amazingly for me, though it's not for everyone, and there are other medicines now to try. 

Others here have been living well with CML for many years: you'll hear from them soon.

The first year is so challenging as you both adjust: physically for you, as the CML gets blasted, and emotionally of course for all of you. But with the targeted therapy available to treat CML these days, you can have a normal life expectancy, so keep your plans and faith in the future intact, just a little on-hold for now.

Read Trey's link above, it will help you get the information that will assist you in facing the first months of treatment, then help you understand your ongoing treatment, and the steps of achieving good results.

At your own pace, ask questions as you go, plus do searches here by key words too, and you may soon enjoy getting used to being part of our world CML family. We joke, we gripe, we whine on occasion, we share, we learn, we lurk without posting: everything is here, for everyone, in every situation and mood. Welcome, you are among the folks that will always understand everything you are going through!

ChrisC

[tiouki]

Hello John,

Last august I was in the exact same situation, WBC about 400k, extremely tired etc...

After 3 months of sprycel, I had not any symptom, having a perfect 22 years old life. Side effects (nausea, headaches) are usually quite transient (first weeks), I recommend taking the drug at dinner time.

This disease is EXTREMELY WELL treated now, very different than most cancers, and the drug is not a "real" chemo as Trey said.

Hang on there, the rule with CML basically is "After diagnosis it only gets better"
I promise you will be much better in a few weeks/months

Regards

Pierre

[Johnmontoya923]

Hello All,

This is Johns wife, Charlene. Thank you so much for responding! You brought tears to Johns eyes and mine. John has been struggling so much and there is only so much I can do and say. His response is always 'you don't know what I am going through' and he is right. But I helped him find this page and now he can hear from people that do know what he is going through! It has already helped so much!

I have been telling him a lot of what you said, especially that sprycel is not a true chemo. He is really hung up on taking'chemo' his whole life. I keep telling him this is a very targeted drug and it is a TKI NOT chemo. Thank you for reiterating what I have told him.

We have been through denial (john stopped taking the sprycel, decided he was going to treat it naturally. After 2 weeks his count was back up to 116. He had to go back on the hydrea to bring it down now he is taking the sprycel), We are in the anger/depression phase now. And I say 'We' because I am going through it with him, I hold him when he crys and I am the target when he is angry.

John is very excited to have found this page. I told him when he is sad at midnight, he can jump on and read what others are goiing through and know he is not alone.

I would expect to see a lot of John (and myself). I may start my own account so I can jump in with the caregivers!

Thank you all again!

Charlene Montoya

[rct]

All respect to everyone here, but if you were having the problems some people have with these TKIs you would be calling it an actual, real, honest to gawd chemo.  It does a disservice to everyone when those that are taking it and doing just great call it not a "real chemo".  I certainly hope none of you doing well on these drugs ever suddenly need to do something about your work hours or are about to lose your job or something, and you are reminded that it isn't a "real chemo".

It is. It is really hard for lots of the not many people taking them.  Statistically speaking, the people on the innnernetz are generally feeling well enough to do this you might notice.  There are a whole lot more people in this little group of people than are on here, and they aren't doing so skippity great.  6, 7, 8 years from now, you might be rethinking whether it is "real chemo" or not.

rct

[TeddyB]

One of my children had Hydrocephalus (Water in the brain) in 2009, which led to learning/physical disabilities etc, might even lead to autism, but we still dont know that yet. My soon to be wife had a breakdown last year and was hospitalized for a week with what the doctors though were heart issues. So i can definitely relate to your situation as we also have had our fair share of crap these last years.

Im 36 years old, and was dx`d in April this year with a high wbc of 270k and was started with Gleevec.

Ive only been on the TKI`s 3,5 months, but the side effects are starting to loosen up already, i hope they will do the same for you.

As everyone has said earlier, things will get better over time, it has for me already, especially the last few weeks both physically and mentally.

Some are stuck with more side effects than others, but the general trend is that they will loosen up, so hang in there, and come here when you need to talk.

As for the ones arguing if this is a real chemo or not, i dont have an opinion on that, but in general, TKI`s like Sprycel, Tasigna, Gleevec etc, has less side effects than "traditional" chemo, but unfortunately a few(luckily not many) people don`t tolerate the drugs well. If the you have long term problems with sprycel, there are always a few other drugs to try which might reduce the side effects, and even a few more drugs to try if you join a clinical trial. If we are lucky they might even find a cure some day so we can stop TKI therapy, and if we are really lucky like some people here, we can go off the TKI`s and still keep our cancer in check. So keep your hopes up!

Best wishes from Norway.

[Trey]

It is disheartening that your wife struggles with the low blood counts, and that is a real problem partly caused by the drug.  But that does not make it chemo.  I will just reiterate that you do not hear Dr Druker, Dr Shah, Dr Goldman, Dr Talpaz or any of the most notable CML experts call these CML drugs "chemotherapy".  Dr Druker's bio makes a point to clearly distinguish Gleevec from chemotherapy:

"He began treating patients in a community cancer clinic half a day a week—an  experience that cemented his desire to develop targeted drugs to attack cancer cells without the harmful side effects of chemotherapy."

http://www.hhmi.org/...druker_bio.html

(See  para 3)

If someone says the "broader" use of the term would apply to TKIs, then it would also apply to aspirin and every drug that is not a naturally occurring substance.  But if Dr Druker refuses to call TKI drugs "chemotherapy" then so shall I.

[rct]

Really?  "disheartening"?  Is that what you tell the insurance companies? Your employer?  Believe me, and I hope none of you ever do, but should any of you ever actually need to actually start dealing with problems with this stuff, you will entirely resent any reference to it being "...just like diabetes", and "...not real chemo" like people like to say. 

It's a real problem, it's a real problem that nobody wants to actually say is caused by the drug.  Know why?  Because then it actually IS real chemo, because there are two kinds of people outside of this room that use the drugs it takes to keep yer counts up, and they are people with hepatitis and chemo patients.

I'm sure if my wife was doing 200 a day and having no side effects and life was a dance, she'd be calling it not "real chemo" too.  She isn't.  Many aren't.  Many are at Drukers office all the way from the east coast because 200 a day doesn't do it for them.  Many have been at it way longer than a couple months.  It's insulting and it's dissappointing to say the least to see the very people that take it minimizing it like that.  Especially when they just started!  Not a CLUE what this stuff is like for the long term, not a CLUE what they are going to feel like when they age a hundred years in the next five!

You do a disservice to everyone that has to take these drugs when you minimize it.  Period.  And I sincerely hope NONE of you ever has to fill out disability papers and explain why the "not real chemo" is causing you to be unable to work for a living anymore.

rct

[ChrisC]

rct, we are all hurting to hear of the ongoing struggle you and your wife and, as you say, many others are dealing with daily. By nature, we all see life through our own glasses, and with no disrespect to anyone else's experience, we can forget the heartaches and the joys of those we don't hear from very often. I do hope that hearing of the miracles some of us are experiencing and sharing uplifts, rather than crushes, you and others. My sympathies if that has been your experience.  It is always good to hear from you! I think perhaps it could be useful for you, and those others who share similar experiences, to post and receive feedback, as it might benefit us all, and especially help others to not feel so alone in their challenges with CML. Sorry if you feel forgotten.  I can relate to your point about applying for disability: after three years I was finally approved earlier this year. Fatigue was and is my beast, and while I had hoped that it would disappear when I went off Sprycel, it is a daily challenge to not give in to it. No fork lift has arrived to drive me around, it's all on me to rebuild my strength and improve what I can at my age.   All the best,  ChrisC

[mariebow]

  The first time that I called to my see if my mail pharmacy cura scripts, would cover Tasigna, I talked to them and was transferred to the pharmacy department, the pharmacist told me that the tasigna was chemo, well it was like someone had punched me in my chest, because my hematologist said that I would not have to have the chemotherapy and radiation, just a pill to kill the leukemic cells, and I hear some saying that it is not chemo.  I am confused.

[CallMeLucky]

John and Charlene,

I don't want to get hung up on the chemo vs not chemo because it is not all that relevant to where you are right at this moment.  I respect what both camps are saying, but to keep focus this is your thread about your recent diagnosis and as such I would like to focus on what you are going through at the moment.

I understand where you are, for context, I was diagnosed 2 years ago at the age of 37, I have two children now 6 and 8.  I went in for a typical physical and found out I had CML.  It was shocking and hard to deal with.  My wife also struggled with it.  For some, the CML treatment is harder than it is for others.  Age and other health issues play a lot into that.  For some they are just more sensitive to the drugs then others and have a harder time with side effects and to keep it real the reality is that for a few the drugs do not work.  Thankfully that number is small and there are more option today for treating CML then there has ever been.  There are three approved drugs, two others coming to market soon and others in pipelines.  If you have to get cancer, this is a very treatable form and to that end some might consider you lucky compared to other potential diagnoses.  That does not sit well with many, so let's just say it is  different for you then it will be for anyone else, each person has their own path to follow with this disease.  Everyone approaches it differently.

So like anything else there are those who do well and those who don't, most do ok and get by.  I work full time, I take care of my family, take vacations, etc.  I also tend to get sick more frequently with colds and stuff like that and it lasts longer.  I'm fatigued and I get some muscle pain and skin issues like sun sensitivity etc.  All of it is manageable, would life be better without it? sure, but I can handle it and most people can handle it, you will likely be able to handle it.

For many the mental fight with CML is harder than the physical fight.  There is a good chance that over time you will feel much better than you do now, probably not 100% the way you used to, I would say I'm about 80% most days.

I enjoy things in life and I have learned that life continues to go on.  My wife and I have dealt with a considerable amount of tragedy over the last two years, sadly right now CML is the least tragic thing in my life.  This past Jan my wife's father was diagnosed out of the blue with a Stage 4 Brain tumor.  No TKI drugs for him, no magic bullets, no second chances, he is currently in hospice and we expect him to pass any day now.  If that is not bad enough, this past March my wife's younger brother unexpectedly died at the age of 35.  I don't know how my wife gets out of bed in the morning, but she does and surprisingly she even smiles once in a while.

Make no mistake, life will not stop for you, you will learn to get along with your baggage and deal with it because that is what we do, it isn't fun, but it is better than the alternative.  Life is worth living so we fight to keep going.  Know that the feelings you are going through are normal, we have been there.  I would suggest seeking out a good trauma counselor for a period of time, doesn't have to be forever, but you have experienced a trauma and it should be treated as such.  The way you saw your life and your place in the world has been disrupted, you are much more aware of your mortality which is now front and center in your mind.  That will take some time to get used to.

This has been long enough so I will wrap it up, we can keep talking on other threads.  Some things to keep in mind with regard to statistics and how things will work out for you compared to someone else - I copied this off someone's thread in regard to their wife who has AML

"Cancer is a very personalized disease.  A friend of mine who is a cancer researcher gave me some advice early on. Going into this process and recognizing the dismal prognosis for my wife, he told me that you will see lots of statistics that aggregate data on a lot of people.  He told me not to pay attention to any of the statistics.  Your genes, your cancer, and your situation is unique to you and is therefore different than the cancer of others.  As an individual, you really have only two statistics, 0% and 100%. You have to go for the 100%."

Lastly I want to leave you with one last thought for when you are frustrated about taking your pill.  It is normal to feel it is a burden, this "poison" we have to put in our bodies.  Try not to see it that way and when you do I want you to visualize this

Think about yourself being in a dark room at night, you look up at the door and death enters, it is clear why he is there.  You look over at your wife and children who are asleep and you look to death for compassion, you ask for more time.  Death considers your request and hands you a pill.  The deal is you must take this pill every day that you want to live, it will not make you feel well, but you will be alive.  You will wake up in the morning next to your wife and lay down with her at night to go to sleep.  You will sit at the table with your children during dinner and help them with their homework.  You will love, laugh, and face other hardships in your life, but you will live in spite of this illness.

Given the choice what do you do?  I chose to take the pill and I suspect you will too.

Don't bother looking backwards, you will miss the things coming your way.....

All the best getting through this tough time, know that you can do this and we are here for you when you need some support.

[CallMeLucky]

To me it doesn't matter what they call it, I would take it if they called it "Dog Cr*p", all that matters to me is if it works and keeps me alive. 

[rct]

ChrisC wrote:
rct, we are all hurting to hear of the ongoing struggle you and your wife and, as you say, many others are dealing with daily. By nature, we all see life through our own glasses, and with no disrespect to anyone else's experience, we can forget the heartaches and the joys of those we don't hear from very often. I do hope that hearing of the miracles some of us are experiencing and sharing uplifts, rather than crushes, you and others. My sympathies if that has been your experience.  It is always good to hear from you! 

I really appreciate those kind words, Chris. 

Nobody has to hurt for us, or for the literally 10x the number of people in here that aren't in here probably because they feel too like crap to be goofing off on the internet.  Nobody has to remember that there are those less frequent participants.  None of the experiences of others is crushing at all, and we've been at it far too long to gain any hope unless that hope is prescribed by whatever Ace Onc Team we are seeing at the moment, because we have been at it long enough to know that each and every individual is entirely different.  Cancer, and yes, unfortunately, this actually is blood cancer, it treats each and every person differently.

ChrisC wrote:
I think perhaps it could be useful for you, and those others who share similar experiences, to post and receive feedback, as it might benefit us all, and especially help others to not feel so alone in their challenges with CML. Sorry if you feel forgotten.

I think I restrain myself pretty well here.  I think there are legions of new peoples that have come along and been told how just freshy fresh everything is going to be.  I refrain from telling people that two, three months is not having this thing licked and get back to me in 5 years.  I do my best not to poop on anyones parades, and I think I do well. 

I do not feel forgotten at all, that isn't the point.  The point is only that while I am not pooping on parades, those that are doing fan TAS tic, at one half to one third of the dose others are doing, those that seem untouched by what can be pretty debilitating side effects, those that don't have any problems with work and life and getting on with whatever it was they were doing when they were diagnosed, those folks need not shoot the rest of the CML patients in the back by minimizing and dismissing the seriousness and significance of this particular blood cancer, and what these drugs can and do do to people.

ChrisC wrote:
  I can relate to your point about applying for disability: after three years I was finally approved earlier this year. Fatigue was and is my beast, and while I had hoped that it would disappear when I went off Sprycel, it is a daily challenge to not give in to it. No fork lift has arrived to drive me around, it's all on me to rebuild my strength and improve what I can at my age.   All the best,  ChrisC

I am glad you got through the paperwork.  We pay our entire lives, 82% of us will never receive a dime of disability that we've spent our careers paying, and the few that need it are given nothing but a hard time about it, nothing but more of exactly the bee ess they don't need at this time in their lives and god forbid they actually need some help.  Remember Kareem Jabarr and "...like diabetes...".  Matt Lauer really helped thousands of CML patients with that, it's probably still echoing in the minds of thousands of state workers tasked with culling the disability apps and determining who gets what.

That's all.  This is the absolute last place on earth I would expect not only to not ever hear the words "not real chemo", but even further to get argument from a CML patient about it.  This might be a lark for a few, but I would bet, based on our visits to hospitals on the east coast and as far away as Oregon, that number for whom it is a lark is very small.

I think of each and every one of you every day, I really do, and I hope whatever good is happening for each of you continues.

rct

[scuba]

RCT - How is your wife? Which TKI is she taking and how much? Have her blood levels returned to near normal? and her PCR/FISH are trending down? I know she had myelosuppression.

[rct]

Scuba you are Michael I believe!  She is...fine.  What are people with CML?  All of you know, you aren't the same as you were, and with each passing month, year, you are even more different. 

She is still 400 Gleevec.  No, her counts have not recovered, not in...4 years now.  PCR has only had brief forays up from U, so we are always pleased with that number at least.  We have gotten out to a month or 5 weeks without Neupogen, but have ended up using it.  Last one was about 5 weeks, ANC was down to 400, so she shot a half a stick because of some public things we had to do, don't want to get whatever SARs the kids are toting about!  Leaving soon for Yellowstone for a couple weeks, so trying to get some walking in and get some stamina up.  Probably shoot one before we go.  We've actually had a delivery at Yellowstone, so we would like to avoid that again!

For new folks reading this, it is important to note that prior to her counts tanking, she was pretty much a model response as far as cancer goes for two years plus.  Was not great with the side effects at all, but good response and while they were low, her counts were acceptable most of the time.  Out of nowhere suddenly started dropping anc and wbc.

You are still on very low dose Sprcel?  And hows the counts?  And the curcumin, I see you occasionally about that, not much from you of late.

Is good to hear you though, is good to hear all of  you!

rct

[CallMeLucky]

Hey RCT,

I am curious about something and I hope you don't mind me asking, I am not trying to pry or question the choices you and your wife have made, but I would like to ask the question.  I know she has struggled with the counts for sometime now.  Why doesn't your wife try a different drug?  I know there is a chance it will not be different, but given the fact this appears to severely impact her quality of life, it seems like it would be worth trying.  I suppose I would be scared to do it for fear of counts dropping even lower with what are seen as more powerful drugs.  But it seems like the specialists you see would be willing to give a try with a low dose of one of the newer drugs and see if it helps.  I'm sure these conversations have been had and I would just like to know the line of reasoning if you don't mind me asking.  As you stated, things can turn on you over time so I like to understand what others have gone through.

Thanks

[Johnmontoya923]

Call Me Lucky,

Thank you so so much for your kind words of wisdom. You brought tears to both of us. Thanks again! and Blessing to All!

[rct]

She's tried both.  Didn't make either one two weeks and was shooting neupogen again.  All, including Druker, agree that if we know the response with Gleevec, and we know what we have to do, and we know we would do the same with the others, why not stay with Gleevec until never hopefully needing to change drugs because of PCR.  The side effects of neupogen don't change, and they are not good at all.  Best to stay with what we know works until it doesn't work, that's what we've come up with.

We don't rule it out though.  Will probably be averaging 4 - 5 weeks between shots by the end of this year, and that is a good thing compared to once a week only a couple years ago.  If it gets out to 6 weeks - 2 months next year I think we would stop thinking about trying anything else, but continue hoping this doesn't get worse.

I think one thing people don't stop to think about is that just because you already have CML doesn't mean you don't have or couldn't develop MDS or MMS or any of the other marrow related problems.  It also doesn't mean that the grower won't give you problems, because it can and often does, in fact, it is specifically not indicated for treatment of leukemias because it causes...leukemia.  Awesome, ehy?

We've driven to Portland from southern New Jersey.  We've had as many heads scratched as we can get, nobody really has an answer.  PCRu, but crappy counts might just be a success, and Druker himself alluded to it being an acceptable outcome.  It still isn't a good spot to ever be in, no matter who approves!

rct

[Johnmontoya923]

Teddy,

Thank you for your response, it really helps to hear that Im not the only one going through this, but I also do wish that none of us had to go through it too. Thanks!

Blessing to all.

Jon