18 replies to this topic

[Kawigirl]

Hey y'all,

New to ALL of this, even the forum type discussion board.  Here is my story in a nutshell:

I am a 32 year old female, married with 2 kids (5.5 yrs and 2yrs) both boys.  I am a very active and healthy girl even though I'm stuck at a desk all day .  I workout at least 5 days a week and ran my first 1/2 marathon on February 5,2012.  I am prone to upper respiratory infections and after my 4th in 13 months the PA at my Dr's office thought it would be a good idea to do a physical (god bless that woman).  Then BAM, high WBC counts but not off the charts like i've seen others report (35,500).  Same day, STAT more blood work and by 4:00 in the afternoon on April 10th my husband and I were back in the Dr's office with words like Cancer and Leukemia being thrown around.  Two days later I went for a "consult" with a hematologist at my Dr's recommendation, more blood work, WBC's up near 40K now and next thing I know he is busting through my hip for a bone marrow biopsy (which I am sure y'all will echo "i wouldn't have my worst enemy go through that").  Anyway, fast forward a week or so and I have a confirmed PH+ CML diagnosis and started Gleevec 9 days ago.  So far I feel alright, but it is like waiting for a volcano to errupt...or not!  I have had a few headaches and the horror of a 7 lb weight gain in less than a week (probably water weight, but still), woke up one morning and could barely open my mouth because my jaw hurt so badly....but really not much to complain about except the obvious adjusting, shock, worry, etc.  I am still exercising 5 - 6 days a week but I have backed off a little on the intensity and have dropped the weight a bit in conditioning...oh, and I'll wait a little bit before I head out for my next 1/2 marathon which I PROMISE with be the LLS sponsored event

Like I said, I'm healthy, I eat good and exercise, yadda yadda....so this was an earth shaking shock for my husband and I and also for the rest of our extended family.  Here are some of my questions for those who know exactly what I am going through:

1. Anyone else out there with a similar demographic to me?  How has life changed for you, if at all?
2. Those with Side Effects, How long after starting Gleevec did you experience your side effects? 
3. How stringent should I be regarding the potential for garlic to interract with Gleevec?
4. Citrus, Green Tea, Garlic....what else should be avoided on Gleevec?
5. How often does your DR check your WBC counts to evaluate the effectiveness of the drug therapy?

Thanks for listening and thank you for your feedback. 

[Lizzybee]

The first few months are scary and intense. But the good news is that most people respond very well to the CML meds and after awhile you will stop waiting for the other shoe to drop.

I am on Tasigna, so my side effects are different.  They started about a week or so after I started taking T, but they did subside somewhat after about 6 months.  One of the most important things is to take good care of your skin because TKIs inhibit the growth of fast growing cells, so you may sunburn more easily than before and heal more slowly.  I don't limit citrus other than grapefruit, but I don't eat it too close to my medication time.  I eat grapefruit occasionally, but not as often as before.  With Tasigna, grapefruit is the main food to watch out for, so maybe someone on G can post more about the garlic and green tea.

I initially got checked weekly, then every other week, then monthly, then every six weeks.  For the first time, I am waiting three months from April to July.  I was diagnosed 6/30 last year, so I'm at 10 months now.  My wbc were 317k, I was hospitalized with fevers and for a blood transfusion 2 days after diagnosis, and I had to take six weeks off from work to recuperate.  So possibly my onc was checking my bloodwork more often than he would someone who was diagnosed earlier on.

How has my life changed?  My kids are older than yours, 18, 15, and 10.  So I am not chasing toddlers any more.  But I am still tired a lot and getting a lot of sleep doesn't necessarily make it better.  My fatigue levels are better since diagnosis, but I think most people's fatigue levels are worse after diagnosis because it's a side effect of the TKI's.  I was severely anemic when diagnosed, so I was already suffering from fatigue.  With my oldest starting college this year, I thought I'd return to working fulltime this year, but that is not an option.  I work about 75% of fulltime, and I am at my limit.  On one hand, I am trying to take more time to take care of myself and foster friendships; on the other hand, I have to be careful not to over schedule myself so that I can get enough rest.

I have a blog if you'd like to read it. http://www.myleukemi...ey.blogspot.com

[cousineg]

HI,

       If you've just been diagnosed , I suggest you to meet Carolyn Blasdel .

             

       I suppose that you love painting. Take a break of reading medical topics and

       go to that link: CMLer's portofolio

               

       But If you like more music, then go to:

          The march toward healing

          Too much angels in heaven!

          The battle for healing

          Dia international de la LMC (Spanish music)

                     

       If you like sports then go to Sports with CML

                              

Welcome to the group,

                                  Gilles

[Susan61]

Hi:  Glad you joined us.  Not exactly a club you want to join, but you will find a bunch of great knowledgeable people to help you through any questions you might have.  Try not to overwhelm yourself with too much information in the beginning.  You will learn everything really quick, and its not that hard. 

     I  was diagnosed in 1998, and I also am on Gleevec since 2000.  We did not have Gleevec or any of the other TKI drugs back in 1998, so your off to a good start already.  Try not to let the side effects bother you.  They get less as you are on the Gleevec longer in most cases.   Also,know that CML is so treatable.  People hear you have Leukemia, and its Oh My Gosh!  You said your very active, and I hope you can keep it up.  If you have days where you do not feel up to it, then rest if your body is telling you to take a break.  I get fatigue, leg cramps, eye edema, and weight gain.  Everyone is different in what side effects they get, so don't think you will get what everyone else gets.

   In the beginning I  had to get a BMB every 3 months, but the protocol has changed a lot through the years. Every doctor treats in his way.  I am at the point now, where I only do blood tests.  I do not want to confuse you with all the different stages of how you get to this point.  I am sure your doctor will discuss all this with you. 

  Just ask questions as you go, and you will get a lot of answers.  I would not worry about the Garlic.  I use it in cooking or I have eaten Garlic Bread.  The only thing they told me to avoid was Grapefruit and Tylenol.  I also heard about the Green Tea, but I am not a Green Tea Drinker so that did not bother me.

  I hope we all get to know you, and hopefully be a help to you as you go along.  There is always someone on here at all different times of the day.  Just post anytime, and you will get a quick answer.

[0vercast]

1.  Anyone else out there with a similar demographic to me?  How has life changed for you, if at all?

•  White male, 29 years, dx 2 months ago.  Also active and healthy.  Life hasn't changed a whole lot for me, but I do find that I must maintain a normal sleep schedule or else I get tired.  For many years, I used to keep a rather unhealthy sleep schedule (4-5 hours/night plus occasional naps) and still had loads of energy, but not anymore.  Now I need my 7-8 hours or else I'm tired the next day.  I'll make sure to go to sleep at a proper time even if I'm not tired, which is normally the case.

2.  Those with Side Effects, How long after starting Gleevec did you experience your side effects?

•  I don't have any side effects at the moment, other than mild constipation.  When I started treatment, I was taking 600mg of Gleevec and 4000mg of Hydrea.  I experienced weight loss, mild nausea due to drinking large amounts of water (1 week), 80-90% loss of taste (1 months), hair and nail growth slow to a crawl (1 month), occasion shooting, ice cold bone pains in my hips and lower back (2 weeks), insomnia (1 month), edema around the eyes in the morning (few times), nightmares/strange dreams (1 month), minor foot and hand cramps (2 weeks), and itchiness around the ribcage, armpits, and elbows (2 weeks), and the worst of all was severe constipation that only repeated 3-pill doses of Ducolax could fix (6 weeks).  Now I just take 400mg of Gleevec everyday, and that's it.

   I personally feel that many of my side effects were due to stress and lack of sleep, and not the medicine.  Once I relaxed and stopped dwelling on leukemia, and accepted that this lousy hand of cards I had been dealt almost certainly wasn't going to cost me my life, they all went away.  Except for the constipation, but that's going away now, too.  It could be a coincidence, but I don't think it was, at least not entirely.  What would this effect be called?  It's kind of like a placebo effect.

3.  How stringent should I be regarding the potential for garlic to interract with Gleevec? / 4.  Citrus, Green Tea, Garlic....what else should be avoided on Gleevec?

•  News to me.  I love garlic, and I drink tea almost everyday.  Green, red, white, and black.  My understanding is that grapefruit is the only thing that I must avoid.  My paperwork on Gleevec from Triessent specialty pharmacy doesn't mention anything but grapefruit, which interferes with the body's ability to uptake Imatinib.  I treat it like I'm allergic to grapefruit, which is fine by me.  I like fresh grapefruit w/ dark honey, but I can live w/o it.

5.  How often does your DR check your WBC counts to evaluate the effectiveness of the drug therapy?

•  For the three weeks until I had settled into hematologic remission, they were taking blood every second or third day.  I had a track mark like a heroin junkie.  This was because I was taking large doses of Gleevec and Hydrea and my numbers weren't dropping as fast as they should have.  Then I had two over the next 5 weeks, and now I'm in a routine where I give blood once a month.  Won't be long until it's only once every three months.

Hope that helps, Joe

[pamsouth]

Kawigirl,

is Kawigirl, a name from hawaiian?  Cool bike pic.  Do you do bike stunts?  I admire that  ""you work out 5 days a week and ran your first 1/2 marathon on February 5,2012." and with two young children, family, job and all.  Wow you are one busy gal.  Keep up as much exercise that you can, it will pay down the road.

Really sorry to hear you were diagnosed with CML, sounds like you are doing are the right things to stay health. A real bummer, I guess cancer is no repsector of persons.

I am not in the "similar demographic to me"  with age, small children and work.  I was diagnosed with CML IN 2005 at the age of 57 years old and am still on Gleevec.  It's been a roller coaster ride with the emotions and all.  But its been almost 7 years now.  I think my combination of health issues would be a lot different because of my age.  I think with age any chemical drugs are harder on you.  Then you never know what is the AGE, CML, & TKI, or the combination, that cause other health issues, especially when your counts get low.

Anyhow there will be other who are newly diagnosed and your age with a family.

God bless and hopefully there will be a cure!!

PamSouth

[Happycat]

Welcome, and sorry you had a reason to join us.

As far as the demographics go, I've got a decade or so on you, married mom with 3 girls, 11, 9 and 9. I'm not chasing little ones, but we are heavily into soccer now, so spend a lot of time on practices and games. Then there's the after school activities, etc. it's a different kind of busy which much to my chagrin takes more of "my time", meaning I am lucky to get any time to exercise anymore. Enjoy it while you can!

Life hasn't changed all that much, or rather, the CML hasn't changed it that much. My kids growing up and stretching their wings has had a far greater impact on my life than the CML.  Once you get over the first 6 months or so and things settle down, the CML becomes more of an annoyance.

Side effects, thus far at just over a year on G, not too bad. You learn to deal with those, too. I got the constipation, seriously annoying weight gain, occasional joint pain, muscle cramps and spasms, and occasional fatigue. But it's only been a year, so I suppose one or two could get worse or I might get a new one. Most of the side effects are at the annoyance stage now as I've learned how to handle/control them. I'm interested to see how the muscle spasms go this summer. I wonder if heat and dehydration makes it worse in the summer.

Huh?  I can't have garlic?  Never heard that one. I was told to watch the grapefruit and Tylenol, and for me personally, the ibuprofen - I was practically mainlining it pre diagnosis for neck pain.

My schedule went something like 1 wk, then 2 wks, then 1 mo, then 2 mo, then at some point 4 mos, etc. how quickly you go to longer time between appts depends on what your bloodwork looks like. And how comfortable your onc is about it.

HTH

Traci

[Pin]

Hi Kawigirl,

Welcome to the group It is really scary in the beginning but it does get easier with time and everyone here is so supportive and helpful.

You sound a lot like me, except that I haven't had any children yet...I'm a 30yr old female and I am also very active/have been healthy up until this point, do sports or running 5 days a week, and also work at a desk! I also had a lot of respiratory infections/colds etc before being diagnosed, but interestingly in the last year since taking Gleevec I've only had one cold and it was extremely mild (yippee!). Not sure if anyone else has had a similar experience, but for me being diagnosed has helped dramatically with that particular problem! Life has changed, definitely - but in some aspects not for the worse. I do tend to stress a lot over everything, but I did that before diagnosis so now I just have somewhere more important to channel my worry as opposed to thinking about things that don't matter at all. I can still play sports, which for me is a huge bonus.

With side effects, mine come and go quite dramatically after 10 months in - I believe this is common with a lot of people that have had them. My cramping was not too bad in the beginning but has recently gotten a lot worse. I am trying ways to treat it (magnesium, calcium etc.) with some success. I have a lot of other side effects - but it's a boring list, mostly problems that you can live with so I don't want to bore you with them! I don't know anything about the garlic issue, as everyone has said I'm pretty sure garlic is ok, maybe supplements aren't? Not sure, but check with your doctor before taking any supplements anyway. With most things I just try to avoid having them around taking my Gleevec (i.e., I take my calcium at night, and Gleevec in the morning) just to be safe.

In the beginning I had blood tests every day, then every second day, then third day...then weekly, fortnightly, 6 weekly, and now 3-monthly. Usually, they will monitor it fairly closely in the beginning to make sure that you are tolerating the drug ok, and to watch your cell counts.

Anyway, it is nice to meet you - hope you are doing well and hope to see you on again soon

Cheers,

Pin.

[Kawigirl]

Hi Lizzybee,

Thank you so much for your reply, i am finding that this is a fantastic group and appreciate you sharing your information. 

[Kawigirl]

Hi Susan61,

OMG, BMB every 3 months....that sounds like hell.  I hate that you had to go through that and am so grateful for the progression in the treatment of CML.  It seems like they are learning so much, so quickly no that they have id'd the Philladelphia gene component of the diagnosis.

Anyway, thank you so much for the words of wisdom and for your support. 

[Kawigirl]

Hi Pamsouth,

HAHA, Hawaiian...no; my dirtbike is a Kawasaki so that is where the Kawigirl comes from...and no, i don't do stunts...I just ride...we prefer trail riding and some track riding (like on TV) but nothing too crazy, my motto is to "respect the bike and don't break anything"

Thank you for your reply and for your support.  I am so thankful that I have a group that can relate on a totally different level.  Family, especially my husband, are wonderful...but having people who are going through the same thing is just different, and I thank you for that.

have a wonderful day.

Kawigirl

[Kawigirl]

Hi happy cat,

Yep, you are definately a busy mom too....thank you so much for you support and reply. 

[Kawigirl]

Hey Pin,

Hooray, someone like me!!!  I am so thankful for ALL the replies to my very first post.  I have already received so much support and helpful advise and am learning so much.  Basically all of us have the same diagnosis, but that is pretty much the only constant....everyone's experience is different, and knowing that up front is very helpful.

I obviously know that cancer does not discriminate, but it is nice (maybe not the best expression of feeling for our situation), but it is nice to know that there are other women, my age, doing what I do, dealing with a CML diagnosis.  It is tough, for everyone, but comforting in some way to know that I am not alone.

I made notes regarding your treatment of cramps with magnesium and calcium...great advise, thank you.  Very nice to meet you too, and thanks again for posting.

Kawigirl

[Kawigirl]

Hi Joe,

New to this whole CML deal too, huh?  Crazy whirlwind for you as well, I am sure.  Thank you for posting, it helps tremendously to know that I am not alone in these feelings or this fight.  I am going for a 2nd opinion at Moffitt in Tampa in 3 weeks (Dr's are good where I live, but better at Moffitt) I will be sure to talk in detail about the garlic and tea situation because, like you, these are pretty much staples in my daily diet.

Anyway, thanks for the reply.  hollar if you need anything.

Kawigirl

[NotJack?]

Hey Kawigirl,

Wouldn't worry too much about garlic.  Just because we have to avoid too much sun doesn't mean we should avoid garlic and any wood resembling a stake.  I have had a optimal response so far  (8 mos), and have eaten garlic nearly every day.  Take care,  Jack

[Rissa]

Welcome Kawigirl!  I haven't heard about avoiding garlic.  I cook with it a lot.  One of the hematologists I met with said that if you don't eat grapefruit then why bother starting.  I haven't had any since I started gleevec, but I'm not opposed to it.  And I don't think the novartis website says anything about it.  You are supposed to avoid tylenol and St. John's Wort.  Funny thing is, my primary onc tells me to take tylenol.  Maybe he's just not caught up on the literature.   

[GerryL]

Just on the grapefruit - Grapefruit can be an "inhibitor" of the CYP3A4 enzyme in the liver. It means that the grapefruit can slow down the metabolism of the Gleevec out of the body. So if you're particularly prone to side effects, you don't want the Gleevec hanging around any longer then it needs to. I think you also need to be drinking a few glasses of it as well.

The herb St John's Wort is an "inducer" so the Gleevec my leave the body earlier than it should. http://www.liferaftg...g_interact.html

I drink a couple of cups of green tea a day and have had no issues with Gleevec. Garlic is possibly only an issue if you eat a lot of it - using it in your cooking is not an issue.

[GerryL]

Hi Rissa,

My first Hematologist said it was okay to take the occasional Tylenol as my liver function is good.

[pamsouth]

Kawigirl. 

Wow the Moffitt, I hear lots of good things about the Moffitt.  I have a brother-in-law lives in Orlando, he was diagnosed with Osteo Sarcoma in 2006 and that is where he goes every 3 month.  Odd he is an air force retiree, military guy, always been a health nut, and the least of all people you would suspect of coming down with cancer.  let see he is 75 years, so he would have been 69 years old. He came back to Indiana so his daughter could help him as my sister is not in good health.  He did have his knee taken off or replace and several inches of the muscles cut off, also he had the most chemo you could give anyone, because they said he was in good health..  When he went back to Florida, about a year 1/2 it showed back up so he surgery on one lung, then a couple of years later it showed up on his other lung so anther. surgery.  He doesn't take any medicine.  Lots and lots of herbs and vitamins and he doesn't eat meat any more.

We used to have a home just west of Orlando in Davenport.  If we ever move back to Florida that is where I would go the Moffitt.

PamSouth

PamSouth