223 replies to this topic

[Happycat]

Barb,

Sounds like you've had a bit of a rough start with your Gleevec.  I'm glad your husband came back to help you in the beginning.  Are any of your kids nearby?  Hopefully, it will get better soon.  I started feeling a lot better after the first 6 wks or so, but I wasn't quite as bad as you.  I just had a lot of aches and pains, no nausea.  I don't think I've ever had anything taste different - not yet at least.

I know what you mean about the diagnosis being a wild week!  They first thought I had acute leukemia, so rushed me down to the hospital in Boston, tons of doctors trooping through the room, etc.  Turned out to be CML, so I got lucky there, considering the alternatives.

What did you do at BASF?  I'm a chemist, so have an interest in the company.

Wow, 12 grandkids and 6 greatgrandkids!  You are a prolific bunch!  Christmas and birthdays must put you in the poor house!  I'm sure once you are through this bad patch, you will be able to travel and enjoy your family.

Come here any time to get stuff off your chest.  It's a great forum for that.  Nice, friendly, helpful people.

Thanks for sharing,

Traci

[Lolaboo]

Name:  Lolaboo (Lisa)

Location:  Joplin MO

Occupation:  Retired after 20 years as Air Force hospital administrator

Age:  47

Marital/Family Status:  Single, only "child" is a miniature schnauzer named Lola

Hobbies:  Reading, Stained Glass, travel

CML DX and status:  Diagnosed on May 22, 2011.  I have just had my second bc after starting Gleevec 400mg and my WBC is 13.4  Almost there!!

CML stories/tips:  Really too early in the game to have any stories/tips but thank you all for letting me learn from all of you!  Lisa

[Marnie]

Hey, Lisa. . .

I've thought about taking up stained glass for a few years now.  I've heard that it's a pretty expensive hobby.  What kind of projects have you done?

Marnie

[JJR]

1) Jim

2) Northern California

3) Psychologist, yes working full time

4) 40

5) Married, two girls, ages 5 and 7

6) biking, photography

7) Dx'd 3/09, suboptimal responder, on 2nd TKI, partial CyR

8) Funny story, during one of my regular weekly to biweekly blood tests, a nurse on loan from another facility made the comment, "at least you don't have leukemia, that would be awful" when trying to reassure me about my blood draw.  She obviously didn't know how many I get nor my CML diagnosis.  I stated, "actually I do," and she turned bright red and tried to muddle her way through an apology!  CML tip-be your own expert, don't rely on your doctors for everything, advocate for yourself, follow the NCCN guidelines, at some point consider seeking/paying for a 2nd opinion appt. w/ an expert if you can afford it, if not, have your doctor email and expert or email yourself to have someone else review your case.  CML treatment offers a lot of promise but a lot of us still suffer and our lives are under constant threat. If you have children, cherish every moment!  If you can, give back to LLS and keep supporting research!!!

-Jim

[Happycat]

Hi, Lisa!  Too bad you had to join us, but glad you found us!

I loved doing stain glass, but haven't done it in years since we had kids.  Small children and sharp pieces of glass generally don't go well together!  Not sure if I'll ever find the time again, either - at least not until they go to college.

Do you do it on your own, or do you participate in a class setting?  I always needed the help of an expert for the more complicated things like learning how to hold the pieces together when soldering a 3-D piece like a lamp shade. 

And, Marnie, yes it can be expensive, especially if you want some of the more "art" style glass.  But tons of fun and a great way to make some unique gifts for people.

Traci

[Happycat]

Jim,

Oh my goodness, but that nurse must have been EMBARASSED!  You'd think she would know better not to stick her foot in it, too.

Thanks for the reminder to donate to LLS, too.  I tried to donate online, but had problems getting past that stupid "type the word you see below" screen.  I need to go try it again.

Thanks for sharing,

Traci

[JJR]

Traci,

Hey, if you want to donate through my Team in Training site, let me know and I will send you my link!!!  I have a few months more where people can donate through me.  Thanks for the fun exercise in getting to know everyone!!

Jim

[Marnie]

Mark. . .I'm wondering why your doc seems to be so adamant about staying with Gleevec, when the side-effects are having such a negative affect on your life.  My doc was completely open to having me change, even before my numbers went up a lot.  After my PCR flattened out and started rising, I freaked out a bit and was the one that initiated the change in meds.  The doc wanted to wait another 3 months for one more PCR test, but was very willing to write me a scrip for Sprycel when I pushed for it.  He wanted me to try Tasigna, since he has other patients on it, but again, I pushed for Sprycel.  I feel a lot better with pretty much no side effects.  I did have my first hand cramp last week. . .but on Gleevec I was having them 3-4 times a day. My numbers have dropped significantly and I feel a zillion times better than I did.  (Although I've been battling a cough for a month now. . .hopefully it's not Sprycel related).

Maybe you should put on your supersuit and a cape and head back to the doc's office to have a good discussion about the pros/cons of staying on G and the pros/cons of trying something else.  Anyone who shows up looking like a super-hero has got to have some clout with the doc!

P.S.  That's weird. . .your post disappeared.  Did you use your power of invisibility or something??

[lthouse612]

Hey Marnie... yeah.. I don't know what happened there either...   From what my NP is telling me they want to try and max out Gleevec before switching because once they burn that bridge there's no going back to it... I can't say for sure but I'm "pretty sure" I wouldn't want to go back to it! lol  That is unless the side affects become worse with switching.  I can still sense they have my best interests at heart and I think if I pushed hard enough they would support my decision to change.  I think I'm more scared not knowing what will come along with switching meds... I hate change especially if it's for the worse.  But then again... it could be better and from what I hear Sprycel and Tasigna are a bit better as far as side affects go.  Everyone is different I know but again... I HATE NOT KNOWING! 

So the lastest tests show my numbers finally coming back down and so here we are backing down on my gleevec dosage.  Cramps in my hands are not as frequent so I'm grateful for that.  Hope all is well your way!  Take it easy!

Mark

[Pin]

1)  Name: Pinichio

2)  Location: Australia

3)  Occupation: Research student

4)  Age: 29 years

5)   Marital/Family situation: Engaged

6)  Favorite hobbies? I like playing sports - mainly soccer, watching good tv shows (my favourite right now is Game of Thrones), movies, and eating nice food.

7)  CML diagnosed when?  How is it  going? I was diagnosed 4 weeks ago from a routine blood test. Actually, I had been asking that I get a blood test for some time, my doctor didn't order me one each year like you are supposed to - he always seemed to think that I was "fine", "you're young, stop worrying" etc. I showed him, I guess...Anyway, so I had a white cell count of 157k at diagnosis, high-ish platelets of 500 and something, and a slightly enlarged liver and spleen, nobody ever told me what my liver function was at diagnosis but apparently it is back to normal now. I had been feeling weird for at least 6 months, but in hindsight it was probably more like 1.5 years. Basically, I was starting to feel progressively more tired during soccer games, and I just couldn't seem to do as much on the field as I used to - I really thought I was just getting old or stressed, or a combination of the two. Other weird things that happened were that I ate a lot of chocolate at Easter and barely put on any weight (again, I just thought - how lucky, it must be due to my stressful lifestyle...), and I started developing strange new fungal type infections on my stomach and legs (again, just thought - hmm, my immune system must be down due to the "stress"), and also I couldn't stand warm temperatures at all - they made me very cranky and emotional, plus I had a few nasty (about 4) colds in one year - but again, it's just the stress, right? That was about it though, really. And I explained away all of those things due to extreme stress (this studying has been the most difficult time of my life - apart from now!).

So after all that, they diagnosed me after spending a night in hospital and having a BMB/BMA. My initial % of BCR-ABL is 38%, but I'm still not sure exactly which test this was from (my next question for my hemotologist!). And that was that. I had 2 weeks of hydroxyrea treatment as I was waiting on government approval to get my Gleevec, which slowly lowered my count to 125k in two weeks. And then after 11 days of treatment on Gleevec, my blood counts were back to normal. I now have 2 weeks to wait in between blood tests and am now stressing about my next PCR test and what it will show...

8)  Any  funny CML stories or great CML tips you'd like to share? My best tip would be to join a forum. It's been a lifeline for me - just being able to connect with people who are experiencing something similar is so comforting. Thanks for listening!

[lala]

Hi....I had to reread your hobbies......you sound like my three kids who are 20, 23, and 26.......I think they would have listed he same exact list....how funny! My 26 year old son is a foodie, for sure!  He lives in Washington, D.C. And when we were visiting in June, he took us to dinner at The Oval Room....a wonderful restaurant almost across the street from our White House.  Very good food and very cool to walk in front of the White House after dark.  Welcome to our CML club........it has helped me a million times!  Diagnosed in 2006----- found this site just last August!  It sure is a great resource....full of great helpers!  . All the best, Lala

[Pin]

Thanks so much lala

I googled the oval room and the food sounds delicious! I love to try new desserts and some of those look very yummy!

[Happycat]

Pin,

Wow, that was weird.  Got the email with your answers, but couldn't find your post on screen at all.  Only found it by clicking the link in the email.  How strange!

So what are you doing in grad school?  (I assume it's grad school, don't know the Aussie equivalent.)  What kind of research?

When is the big wedding day?  Any time soon?

Interesting that your BMB/BMA was 38% Ph+ with 157K WBC.  In fact, I'm rather jealous.  Mine was 99.5% with just 43K WBC.  But I'm glad you kept on your doctor to get a blood test.  I found I had to do the same with mine, because of the weird bruising and then the rather large hematoma I got.  Initially he wanted to pooh-pooh it a bit, but I was insistent that something wasn't right.  Little did I know, eh? I just thought I was overdoing the ibuprofen - big joke on me!

Thanks for sharing,

Traci

[saiyogo]

Hi Pin,

It's nice that you are into "Game of Thrones", as I am a fan too. Let's have fun sometimes talking about the series ) Have you ever tried to read the book, it is really interesting. I've spending my summer reading these books and was in the middle of "A Storm of Swords" (the third book) when I was diagnosed (Jun 24th). After that I took a 2 week break from my reading (because of CML of course) but now I have returned to my reading (yes, life is back to normal I think so). And the fifth book is out yesterday which is all the better.

Xuan Nam.

[Pin]

Traci - that is weird?! Sometimes the site does weird things to me too...Yeah, it would be the equivalent of grad school. I am doing a PhD looking at methods of encouraging people to seek help for mental health problems - I'm so close to finishing now! I can see the finish line (it's a little further off in the distance now, but it's still there!). We were planning on getting married after I finished studying. I'm not sure now though, I feel like my life is on hold until I get a steady result with treatment - is that silly?

That is interesting about the percentages - I still don't know what test mine was from (bone marrow or PCR??) but I'll find out soon I hope. I had weird bruising too! I forgot to mention this before now because I had forgotten - I burst a blood vessel on the back of my thigh from sitting down in a chair all day - it bruised like I have never seen a bruise before - the doctor at the time seemed to think it was normal but I thought it was very weird - but now it makes more sense, maybe cos my blood was so clogged up. Yuck. Also, is that a picture of your cat? Very cute

Xuan Nam - The show is great isn't it! I have also been reading it too! I was most of the way through A Clash of Kings when I was diagnosed. I am now reading A Storm of Swords but I haven't been reading much lately, I've been falling asleep before I get to it...My partner has just started the latest book which came out yesterday in Australia - He was very excited, it has been a while between books! Happy reading!

Pin.

[saiyogo]

1)  Name: Fullname is Ph?m Xuân Nam, but you can just call me Nam.

2)  Location: Hanoi, Vietnam.

3)  Occupation: just finished university. My original plan (before diagnosed) was to spend a year as an auditor for some experience and then go abroad to study for a master degree (my aim is at ANU in Canberra), having spent the first half of the year learning English (I got an 8.0 in the IELTS test ), it is lucky for me because I can talk with you guys comfortably (a few years ago I barely spoke any English at all). After CML, my plan now is to have a teaching position in my school, which is a more stable and less demanding job so I can have more energy to deal with the disease.

4)  Age: born in April 1989 so I am a little more than 22 year old at the moment. I guess I am one of the youngest members of our club

5)  Marital/Family situation: Single, actually I've never ever had a "real" girlfriend yet, but I hope things will change in the future

6)  Favorite hobbies: Books (I read all kind of them, favorite genres include: fantasy, financial and economics (that's my major)...), Music (Rock \m/ I play the guitar), Movies (just watched the new X-Men movie yesterday and I love it very much) and TV Series (House M.D, Games of Thrones, How I met your mother and some Vietnamese shows too), Sports (Gym, Soccer, Pingpong), Backpacking with friends....

7)  CML diagnosed when: Diagnosed on June 24th 2011. I told my story in my thread but I will have a recap here. Basically, I got a position in PWC and they send my to do a health check up. I was seemingly completely health beforehand. They did a complete blood count to find out that my wbc is a little too high:34k. It was actually very lucky for me because generally in Vietnam, people don't do routine check up (the last time I had a blood count before dx was five or six years ago)

The next few days I go to the National Hematology Institute of my country and after the BMA I got the dx. I took Hydrea for two weeks and then started Gleevec on July 8th. After six days I feel pretty normal, no recognizable side effect at the moment but I know there is still a long road ahead.

8)  Any funny CML stories or great CML tips you'd like to share? Not a tip yet, but here's the funny story: In our country Vietnam, Korean Dramas are very popular (their actors and actresses are very attractive I have to admit), and one of the most frequently used ways to give a series a tragic ending (and take the audience tears) happened like that: at the end of the series, just when everybody thing the main characters will be happy together, one of them will suddenly has a nosebleed and then diagnosed with leukemia and here comes the tragic ending. That's the way almost everybody in my country get to know the term "leukemia", so they always assume it with a very quick and sudden dead. So when some of my close friends heard about my condition, they got very worried about me. So ironically, it is me (with all the knowledge acquired in here and other places) who have to comfort them and assure them that I will still have a very long and normal life (yes I am hopeful)

[Sassylpn]

Hi Billie, I read your post to Country Girl, it sure helped me too.

I was diagnosed with CML 5 years ago and have been on Gleevec since then. I have reached complete remission, but the side effects from it were finally taking their toll. I was getting eye hemorrhages on top of extreme fatigue etc. So with my Dr. suggestion we tried Tasigna and it was nice to get my life back but I ended up with Pancreatitis and had to stop the Tasigna and resume the Gleevec. I cried. So remained on the Gleevec for another month, and last Wednesday I started Sprycel. So far so good, but I have been having headaches, off and on. More like a sinus, band around the head, not terrible headaches, but I thought, gosh if I have to have that I don't know. So to read your post that it is a temporary thing is so helpful. I also have the feeling tired and just yuck, Like you have the flu or something, so how helpful to read your post, thank you. Even us who have had it awhile can learn new things.

I have to have the weekly blood tests and ekg's for awhile.

I used to read another blog, and commented once to someone who was recently diagnosed and was scared, to hang in there, that it was scary but so much hope and help out there. That you will probably die from something else than Leukemia. There is so much help out there and positive thinking is the main thing you have to keep and to have a sense of humor. I had one person just blast me for giving this guy false hope. WHAT? They were evidently not in a good place themselves, I have met a few that figured it was all doom and gloom, and it isn't.

I do have to admit I was scared to try Sprycel, something new with it's own set of nasty side effects, if I have problems with that I would have to resume Gleevec, and I really don't want to go back to the side effects I was having. I think it is great if you can take something and have no side effects. I know a lot have said they went on Sprycel with no side effects, and I am hopeful, but was wondering with the whole headache, feeling like crap thing, to know it is temporary is so nice to hear.

Some of the best things to do is go on sites like this and see what other's have had to go through and what worked for them, and the information we can all share with each other, what better support?

Thanks and take care

Linda

[lala]

Hi....I told you about The Oval Room, that my 26 year old son liked, and now I see the book my 20 year old son is reading:  Clash of Kings!  Funny!  are you sure we aren't related!!!!!!  Lala. 

[lala]

Hi....your English is great!!!!!  You were ssooooo lucky to get the blood test done.  good decision to stick with teaching......my husband worked for PW right out of college, and the hours were ridiculous.  I liked your girlfriend comment, very sweet!    My son is reading the same series you are.....they are long books......lots and lots of pages!!  .   His favorite series is The Wheel of Time by Robert Jordan.  I think he has read each book in the entire series ten times each!  I think he gets so busy reading them, he forgets to go to his college classes!  We live near Chicago and he goes to college in Kansas.  They are known for their basketball team.......he is a huge fan!  My other son  was an Econ major ----he is 26.  I swear his brain always thinks in numbers....are you that way??? . This is a  great group of people....again, welcome to the club.  Keep on making big plans for yourself because you have many, many years ahead of you!  Best of luck, Lala