53 replies to this topic

[jjg]

My specialist didn't want it going to them it was sent direct to me. I didn't want it coming to me because I'm moving soon and also our current mail box is infested with snails who eat all the snail mail - if they're still hungry after eating the mail they eat snail bate for desert . So it goes to my parents so I can't remember if it was registered as they would have picked it up.

[GerryL]

Time frame can take a few weeks between letting your doc know that you're on you're last repeat. The government don't like for you to order the new script too far ahead. The bit I find interesting is that it has to go through this approval process every six months.

The other thing is you can't change chemists too easily as it comes in at full price on their books and then it is balanced out when we pick it up. If we need to go on Sprycel it is about $8000, not sure what our subsidized cost would be, but that would be a pretty big expense for the chemist initially.

[hannibellemo]

Hi, Xuan Nam,

Like PIN I had no side effects from hydroxyurea or the allpurinol. As far as that goes, I really had no side effects from Gleevec except muscle cramps and the occasional GI issue. Unfortunately, about 8 months in I developed a fairly rare side effect in that my liver did not tolerate Gleevec and my liver enzymes indicated there was a very strong chance of severe liver damage so I was switched to Sprycel.

I have a question for you. I find that my tolerance for heat and humidity is very low (I've never in my life liked humidity). Have you found that to be true? Your country, compared to my state, is very humid and I assume you have a certain tolerance for it. Have you found that that has changed since you've been dxed?

Here is a previous discussion for you to look at since you are interested in learning more about us http://community.lls.org/thread/10441. Please feel free to add your information to it so we can learn more about you, too.

Thanks!

Pat

[Tedsey]

Gerry,

Maybe Trey or Traci (happicat) can better explain this, or a pharmacist, but I heard that calcium supliments may inhibit the absorbtion of Gleevec.  I would check that out (but if you have been doing this since dx, since you are MMR, clearly it is OK for you).  I stopped taking calcium suppliments because of this (I still take a multi, but it doesn't have much calcium).

Teds  

[Tedsey]

Sorry Gerry if you are on another drug.  I cannot keep everyone's TKI straight.  I have not heard anything about how it binds to Sprycel or Tasigna. 

[CallMeLucky]

Hi saiyogo,

Your diagnosis sounds very similar to mine.  I had very similar counts.  Went in for physical, blood work came back with WBC in 35K range.  My doctor also wanted to repeat the test to double check.  Came back in 40's.  By the time I got to Hematologist, I was in the 60 range.  Started Gleevec with Allopurinol for a week or two and then went to just Gleevec 400mg per day.  This was exactly 1 year ago.  Today I am in complete remission.  I continue to take Gleevec daily.  I have some side effects, mostly some fatigue and muscle aches in legs.  As time goes on they seem to be diminishing.  This past week I traveled for work, was very busy the entire week.  Just flew home last night, got a few hours sleep and then got up this morning packed up the family in the car and headed out for weekend trip for our holiday weekend.  My point in telling you this is that life has pretty much gotten back to normal and you should expect that life will get back to normal for you.  Most people do very well on Gleevec and achieve stable response that will let them live with minimal disease for many many years.

I understand if waiting for the drug is making you a little anxious, but I wouldn't worry about it.  CML is a slow moving disease, it would likely take many months even a year or two for it to progress to an accelerated phase.  I think your doctor is spot on when he says you are stable and waiting a few weeks for the drug should not be a concern.  It sounds like you caught it early and that is good.  Hang in there, it is scariest at the beginning....

[GerryL]

Hi Teds,

Yes was aware that calcium had the potential to inhibit the uptake of Gleevec but it is okay to take it at least 3 hours away from taking the Gleevec. I take my Gleevec at breakfast, then a calcium supplement at lunchtime and one again at nighttime with my other supplements. It's funny that Gleevec also impacts the body's reabsorbtion of calcuim - so the two kinda work against each other.

Do you take vitamin C to help your body absorb iron better?

Gerry

[Pin]

Hiya, thanks for the info about the scripts and chemists - I will make sure I call them in advance (I got mine on Friday, finally - the ash cloud must be gone!).

Is it ok to have milk with Gleevec? For some reason, milk has always settled my stomach so I like having a hot chocolate afterwards but now I'm worried about the calcium interferring...or is it only if it is a supplement?

[GerryL]

I have mine with breakfast cereal - either porridge or a heavy duty muesli and always with milk and have achieved MMR fairly quickly. I used to take all my supplements then, but just moved them to the evening to be sure. Enjoy your chocolate milk.

Just with your Glivec, you'll probably need to order ahead when you are ready to get your next repeat, it is not something they like to keep on hand. I usually ring mine when I have a 6 left just to give them time to get it in. It is usually available from the chemist about in about 2 or 3 days. But have a chat with your chemist about it.

[jjg]

I worried about the milk too so I just save it for later - probably completely unnecessary.

My chemist at the university where I work orders it in for me. If I put my script in before 10am it is there by 4:30. My first script was filled at the hospital pharmacy and they actually had $6000 of drug (30x400mg + 60x200mg) sitting on the shelf - wow - it's only 20min from my work so its nice to know I could get glivec quickly if my local pharmacy couldn't deliver. Despite all this I'm so paramoid I still get my scrip filled 5-6 days before I run out.

[saiyogo]

Hi everyone,

It's day 10 of my CML life I've just returned from the hospital. I want to give everyone a little update.

After 10 days of 1.5g hydroxyurea and allopurino, today's results are as follows:

WBC: 26k (from 47k 1 week earlier)

RBC: 5.1k (no change)

PLT: 510k (no change)

Because I also had Basedow syndrome since 2004 and received medication for 3 year (but they said I was off the disease a long time ago), so they did an ultrasound of the thydroid and some blood test but told me that the result was normal.

After that I have a change of dose to 1g hydroxyurea/day (so it is 2 tablets instead of 3 perday), and have another appoinment on Friday.

I told the doctor all the side effects that I've been experiencing: loss of appetite (luckiliy it is beginning to improve), trouble sleeping, fatigue and some mosquito-like node on my skin (although some may be real mosquitos, our country have a lot of them). She said it is common and told me to stay hydrated and active and exercise more.

My application for GIPAP (Gleevec donation program) is finally done (that's a lot of paper work) and all my file was scanned for the Norvatis and the Max Foundation in the US to approve. I hope they will give me the med soon.

And thank you everyone for your support, now I know quite a lot about CML (in fact I can't concentrate on anything but that), my mother actually said that I had to stop researching to calm my nerve

[GerryL]

Tell your mum everyone is like that in the beginning.

Just make sure you're only looking at current information, there is a lot of out dated info on the web, which can be quite scary.

[Tedsey]

Gerry,

I used to take extra vita C.  But I have become lazy about it.  I take a multi with vitamin C daily though.  Trey said vita C also helps new cell generation, which I desperately need.  Still pretty myelosuppressed 19 months post dx.  Do you know if calcium levels in your blood have anything to do with getting enough calcium?

Teds 

[Tedsey]

Within a year, you will not be researching so much.  Researching lot after diagnosis seems to be something most of us do.  I think it is just our attempt to control what we cannot.  But keeping yourself knowledgeable is a very good.  And like Gerry said, watch out for very out-dated articles on CML.  Some believe that any information over 2 years may be too old.

Teds

[saiyogo]

Hi everyone,

So after 2 weeks on Hydrea, my WBC is now 16k (26k one week before) and I will start taking Glivec from today (which is a lot sooner than expected, thank God). I hope that it will be kind to me.

One thing that had me worry is the fact that my platelet count has raise a little too high: 628k as of this morning (it is 519k one week before). My doctor got me some meds immediately for this condition (I will add the name of the med later, I do not have them with me know ) but my questions are:

- Is it normal to have a high platelet count (even after 2 weeks on Hydrea), as other patients I know have normal or low count?

- Will Gleevec do something to help me with it?

- I know that high platelet count poses some risk of stroke and blood clotting and I have to be careful in my everyday life. Do you have any advices or warnings for me? (Yesterday I was in good condition so I do some basketball and table tennis with my friends, had a good sweat but my doctor scolded me for that when I told her. Had I know about the platelet count I wouldn't have been so reckless. But luckily nothing happened)

My next appoinment will be after 2 weeks, I hope everything will go well.

On a side note, I received my banchelor degree this week (a "high distinction" one ), declined the offer to be an audit assistance in PricewaterhouseCooper (the company that paid for my regular check up) and applied for a teaching position in my university. This is the first major desicion I take after receiving CML, and it really is a hard one.

Xuân Nam.

[Pin]

Hi Xuân Nam,

That's great news about your white cell count, it's almost normal before you've even started Gleevec, which is great.

My platelets went higher on Hydrea as well. When they first measured my platelets they couldn't even do it because they were all "clumped" together - after a few days of Hydrea they were measured at around 450k, and during Hydrea treatment they went up to about 500k or so, so quite similar to you. After starting Gleevec though, they became normal very quickly - I'm not sure about the relationship between platelets and how Gleevec works, maybe someone else will have some more information for you - but it definitely seemed to have a quick effect for me.

I would listen to what your doctors say though - my doctor asked me to take it easy (e.g., not play any sports) for a couple of weeks when starting Gleevec, just to be safe and to work out what sorts of effects it might have for me.

Congratulations on your degree! What will you be teaching? I did some tutoring in statistics last year and I had a great time doing it.

Cheers,

Pin.

[CallMeLucky]

Sounds like everything is going the way it should.  Try not to worry about the platelets too much.  Take it slow for a little bit and let Gleevec do its thing.  Gleevec should bring the platelets back to normal relatively quickly.  We have had people on here with higher platelets and they are ok.

Congratulations on your degree, there will be many more accomplishments for you in life, despite CML.  Enjoy what you have achieved.

Let us know how you do on Gleevec.

[saiyogo]

Hey Pin, do you take extra med for your platelet condition?

My doctor put me on:

- 25 mg Vercyte (Pipobroman) = 1 tablet/day for the next 15 days.

- 100 mg Aspegic = 1 bag/day for the next 10 days.

These meds were not covered by my health insurrance so I had to pay for it myself.

By the way, I am on my way to become a Microeconomics teacher in my University (Vietnam National Economics University). But I will be a long time until I can actually standing in front of a class ha ha.

[Pin]

Heya, no I didn't take anything extra for the high platelets. Most of the time when I phoned for my blood test results they forgot to tell me what they were at so I assumed that they weren't high enough for it to be a serious problem.

Aspegic I think is like asprin - I assume to thin the blood a bit.

Not sure about the other drug - but it may just be precautionary so your platelets don't go any higher whilst they are getting you started on Gleevec - I would imagine that the platelet count would drop with Gleevec treatment though - but I am only going off my own experience so hopefully someone else can offer some more solid advice...?

Also, that's great about the teaching!

[Tedsey]

Xuan Nam,

You should find that with Gleevec, your platelets (PLT) will go down pretty quickly.  Your platelets may even bottom out (get very low) and then go back up.  That is what happens to many people.  To lower your platelets now and keep your from clotting, your doctor probably gave you heparin or wafarin (but wafarin, also known as Coumadin, does not go well with Gleevec).  Your PLT count can be controlled, so I would not worry too much about a stroke at this time, but it is possible.  I was given heparin while I was in the hospital for diagnosis.  My PLT count went way down and stays low 19 months after diagnosis.

Glad you are feeling well enough to do sports.  But follow your doctor's orders at this time.  Many people feel fine on Gleevec and it works well for most people diagnosed with CML.

It is no wonder you received your bachelor's with high destinction.  You come across as well-educated and well-spoken.  Congratulations!

Good luck with your future career!

Tedsey