28 replies to this topic

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Hello,

 

I was just diagnosed with CML in January.  I had one complaint or another for over a year but my GP always explained it away and never did a CBC.  Finally I made appointments with specialist but never made it to them because I was so miserable.  I went to the URGENT Care and it was there that I found out that my spleen was huge and my white count was 211.

 

I am currently on Hydrea waiting to be for assistance so that I can be switched to Gleevec.  

 

So hello everyone I am so happy this site is here.  I usually try to find answers on my own or wait to ask the doctor but it is always nice to have someone in the same boat to talk to.

 

I know that I am blessed to be alive and that even though I have CML I know it could be a lot worse.

 

Take care everyone.  

 

M

[klf2013]

WELCOME! I had a similar scenario as yours. 6 months of fatigue, amongst other things that were explained away. MD only did a hgb at my first visit...which was low. Put me on Iron...case solved....continued to feel poorly, with increased pressure in the abdomen....insisited on a CBC...and what do you know....a WBC of 74!! I am curious as to why your physician is putting you on Gleevec instead of Sprycel?  I was told when i was diagnosed a year ago, that new thought process is to move right to Sprycel....ANyone else have any insight? Trey?

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Thank you!

 

WOW crazy.  I wonder what goes through the MD's minds.  I was really annoyed by how I was handled so glad I had the sense to take steps of my own I do wish I had not waited so long.

 

My Onco has never mentioned anything else but Gleevec.  Hmmm

[klf2013]

If there is one thing I have learned....research your ONC and make sure they are upto date on current CML info. This a whole new disease since TKI's came around. Gleevec was the first generation of TKI's. Many GP's still think that is the only treatment. The reality is there are second, third and fourth generation TKI's. GLeevec comes with it's own set of challenges, they all do, but from my experience...Sprycel seems to be less of those. ANyone else??? 

[hannibellemo]

Gleevec seems to be well tolerated by most and it is still effective. Should you not tolerate it, or should you not respond or lose response, the other TKIs are waiting in the wings.

With the anticipation of generic Gleevec in the near future it will be easier on the wallet, too. For many, I should say most of us, that is very important.

Just because it is first generation doesn't mean it has been relegated to the back seat.

I started on G but developed liver toxicity 9 months in. I was switched to 100mg Sprycel and I was not one of the ones who found it easier on the body, but after several months I did adjust. That was in 2009.

Welcome, mrsdeejay, looking forward to a long acquaintance with you!

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Thank you Pat me too and thanks for the info.  I will keep you posted on my journey with Gleevec once I get started on it.

[mlk210]

Welcome Mrsdeejay4life! sorry you have to join us, but this forum is very helpful and friendly!

 

I've wondered the same thing klf2013. If I should have been started on Gleevec and then if it didn't work gone to second generations. But I started on Sprycel 100mg so I'll just keep on going I guess!

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Hello mlk210 looks like talking to a group of nice people would be the bright side.

 

I am now curious about Sprycel I am going to research it.  I don't understand enough to know why one over the other I just hope I get started soon.  If I remember I will ask my Onco tomorrow why one over the other.

[jmoorhou]

Can anyone tell me is hair loss noticeable on Sprycel?

[pammartin]

I had significant hair loss on Sprycel. I did not lose all my hair, but large bald spots, especially on the left side of my head. That was also the worst area for hot spots and rashes. I finally put inch guard on clippers and cut it all off. It wasn't as noticable, and I felt better. It grew in pretty much the same as before after a time, only thing I noticed was my hair used to have a great natural curl, now it is fairly straight.

[pammartin]

Hi M, welcome! You have found a great place. I am sorry about your diagnosis, but the group is an awesome place for information, support, and often a good laugh. Nice to meet you.
Pam

[klf2013]

I had hair thinning for the first 6 months on Sprycel, then it just stopped. When I say thinning, I mean the shower wall looked like a person when I was done!  I have been on a year now, and my hair is back to itself...just dry.

[mlk210]

I had hair loss as well on Sprycel, but i also had to contend with thyroid issues too. So, it may been the combination of both. It wasn't noticeable to others, but to me and my hairdresser it was. I'm with KLF2013, it was stuck all over my shower. It did stop and seems less lately. I'm right at 6 months.

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Hi Pam thanks!  I'm happy you all are here.  Maybe someday I can help someone on here.  

[Melanie]

Hello M! Sorry you had to find this group, but glad you did! The people are just wonderful and full of support and sound advice. As others have said, be your own advocate and when there's a doubt, just ask. Get copies of all your medical records and test and read Trey's blogs on CML.
As to which TKI, I hesitate to recommend one over the other. They're all good and it's wonderful that there are options in case difficulties come along. The best one is the one that works for you with the least side effects and it's not the same for everyone.
Best to you on your new journey and may you be feeling better soon!
Melanie

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Hello Melanie thank you!

[Billie Murawski]

Hi mrsdj4l,

I was dx in aug 2007. I was on Gleevac 3 years my onc finally switched me to Sprycel in 2010 because I had a lot of gi problems. When I got my first order of Sprycel the instructions said that I had to have been on Gleevac first before I could have Sprycel. Money talks! Welcome to the club nobody wants to join, But thank God these wonderful people are here. We've all been where you are now but I guarantee you will feel much better soon, just reading the posts and talking to everybody else.     Billie

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Hello Billie thank you. I am kind if anxious about the Gleevec I just want to know how well I will tolerate it. Hopefully I will be able to get started on it this week.

This is a great forum thanks tir being here.

Marguerite

[Gail's]

Hi and welcome here. It's a good place to be.

Gleevec is generally the first place oncs go because it is effective for many and has been on the market long enough for more research. What I'm noticing as I read multiple posts is that everyone experiences at least some side effects to all of the TKIs. It's also good to know that the cost of gleevec may reduce over time with the patent soon to expire. Although I'm not a huge fan of insurance or pharmaceutical companies, I try to be cost conscience. Especially in view of how many people live in states that don't have laws yet requiring insurers not to gouge people with high co pays for oral anti cancer agents. I also feel sick for people on Medicare who have to pay thousands per month until their Part D prescription coverage kicks in.

No matter what TKI you're on, be hopeful that it will kick CMLs butt for you!! And know that if you do have intolerance to the side effects another TKI might work better for you. Don't want to sound preachy here. You have a perfect right to feel how you feel about your process in getting diagnosed and starting treatment. The emotional roller coaster can be pretty rough but this group really gets it, have been through it, and are a wonderful support to me. Hang in there!

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Thank you Gail. The whole cost factor really amazes me but I'm not surprised. If it is going to save my life it is worth the struggle. I do have insurance and I live in Ohio I don't know anything anout the laws for meds here.

I do have a question if anyone can answer I keep forgetting to ask my onc. They told me to avoid any type if blunt trauma to my body (not the exact wording) I wanted to know exactly why. I ask because I was in 2 auto accidents last year and the second one I hit my shoulder in the door and a huge bruise came uo in the back of my shoulder. I had physical therapy but it still bothers me. I am curious what effect the cml may have had on my injury I hope this me makes sense.

Anyway thanks again Gail!

M