72 replies to this topic

[JPD]

Risen,

Hang in there.  You are gonna be okay.  I dont know anything about the Hydrea - is that to help flush the dead cells?

 

These drugs are a PAIN IN THE ASS sometimes (especially what you are on... literally *shart* a pain in the ass) and, yeah, it sucks llama dick having cancer - but the meds are miraculous and you'll be mostly normal really soon.

 

Stay strong.

[Billie Murawski]

I woke up today feeling terrible. I dunno if I'm getting sick or what. I went back to bed around noon, I just woke up at about 4.

I feel really hot, achey, and weak, with a side of stomach pain. Anybody know what I should take?

 

I'm still on the Hydrea, so I don't know if it's related to that, they said my Gleevec was approved, now they're saying we're going to have to pay $2000 for some reason.

 

I'm honestly getting worried.

When I was dx a social worker contacted my ins co. and straightened everything out. Call your pcp or onc if you don't feel better soon. Try to keep yourself calm I know it's hard but trust us it will all work out. We have all gone through the hassle. It's a shame you have to wait all this time to get your treatment started. Of course it has to be Friday, but Monday your mom will get more info about the cost of your meds, theres a lot of help out there. There are so many viruses going around it could be anything but I don't know what to tell you about the pain in your side except have your mom call the doc if it doesn't get better.

[hannibellemo]

Evidently, your onc didn't prepare you and your family for how expensive these medications are. I remember my onc at Mayo using those words several times. Of course, I didn't find out just how expensive they were until I went to fill my Rx. 

 

There is help for co-pay, deductible and out-of-pocket expenses through Novartis and other resources. Most cancer centers have the "navigator(s)" that have already been mentioned and/or social workers who can help lead you through insurance issues.

 

We've all had experience in one way or another with this but your best guidance will be with the cancer center who will know your situation better than we do.

 

LLS also has resources.  http://community.lls...new-applicants/

 

Good luck and let us know how you are doing.

[Susan61]

Hi Risen:  I am a oldie on this board, and have not been on lately.  I have to catch up with all the goings on, but listen to these people who have been living with CML for awhile like me.  I might have missed a few of the posts, but basically what TKI drug were you put on.  I have been on Gleevec since Oct. of 2000, and I am still here.  I will not say that its easy.  I still get side effects  all the time.  I get those hand cramps still to this day.  As you go along, and your getting use to it all, some of the side effects will lessen.

     Later on after you are on your TKI for awhile, they will do a simple blood test to monitor your progress.  I just  had my PCR test which is what they call it, and I am almost 14 years undetected which means they cannot see any cancer cells in the blood.

     I do not want to complicate everything for you, so just do whatever your doctor is advising.

    I was on Hydrea for 6 months before I went onto the Gleevec.  None of these TKI drugs were available when I was diagnosed, and that is why I was on Hydrea for so long.  They were trying to figure out what to do with me.

    I just thought if I shared my journey with CML with you that you could see its so very treatable!!!!

   Just ask any questions, at anytime.  I have to try to get on here more often.

Susan

[PhilB]

I dont know anything about the Hydrea - is that to help flush the dead cells?

 

If the TKI drugs are a bunch of trained assassins, shooting the bad guys and hunting down their bosses, Hydrea is more like an artillery barrage that's killing lots of enemy footsoldiers but can't touch the leaders hidden in their bunkers.  One school of thought is to use it to bomb the enemy hordes before you send in the TKI specialists.  The other school is that the specialists do a perfectly good job even against the initial hordes and that if you use artillery you risk collateral damage.  I know that Trey is very firmly in the latter camp.

[Risen]

Just wanted to check in, I guess.

 

Had my BMB yesterday, it wasn't fun. I took a nap afterwards and woke up really sore. I'm feeling alright today though.

[gerry]

Glad you've got through it without too much difficulty, I was usually sore for a day or two after.

[Billie Murawski]

I'm so glad that is over for you. It's no fun but that is the only way to get a true dx and for your docs to come up with a proper treatment plan for you.

 PhilBs analogy is on spot, see you don't have cml, you're turning into a video game. He does have a way with words. I'm sure Trey will have a response soon. I'm sure you've noticed we're not all doom and gloom cml is a serious disease and we take it very seriously, but you have to have a sense of humor and be able to laugh at yourself. Every now and then you'll get a good belly laugh from one of the members, and by all means join in. In my case I'm rather shy and introverted but I do have a small chuckle on occasion.

                                                                                                                                           Billie

[Billie Murawski]

Just wanted to check in, I guess.

 

Had my BMB yesterday, it wasn't fun. I took a nap afterwards and woke up really sore. I'm feeling alright today though.

Risen check in anytime all the time, thank you for filling us in.

[Billie Murawski]

Hi Risen:  I am a oldie on this board, and have not been on lately.  I have to catch up with all the goings on, but listen to these people who have been living with CML for awhile like me.  I might have missed a few of the posts, but basically what TKI drug were you put on.  I have been on Gleevec since Oct. of 2000, and I am still here.  I will not say that its easy.  I still get side effects  all the time.  I get those hand cramps still to this day.  As you go along, and your getting use to it all, some of the side effects will lessen.

     Later on after you are on your TKI for awhile, they will do a simple blood test to monitor your progress.  I just  had my PCR test which is what they call it, and I am almost 14 years undetected which means they cannot see any cancer cells in the blood.

     I do not want to complicate everything for you, so just do whatever your doctor is advising.

    I was on Hydrea for 6 months before I went onto the Gleevec.  None of these TKI drugs were available when I was diagnosed, and that is why I was on Hydrea for so long.  They were trying to figure out what to do with me.

    I just thought if I shared my journey with CML with you that you could see its so very treatable!!!!

   Just ask any questions, at anytime.  I have to try to get on here more often.

Susan

Susan it's so good to hear from you, I hope you and Gary are doing okay. I imagine this winter has been really hard on both of you at least we're on the downside now.  Take care Billie

[pammartin]

I'm so glad that is over for you. It's no fun but that is the only way to get a true dx and for your docs to come up with a proper treatment plan for you.
 PhilBs analogy is on spot, see you don't have cml, you're turning into a video game. He does have a way with words. I'm sure Trey will have a response soon. I'm sure you've noticed we're not all doom and gloom cml is a serious disease and we take it very seriously, but you have to have a sense of humor and be able to laugh at yourself. Every now and then you'll get a good belly laugh from one of the members, and by all means join in. In my case I'm rather shy and introverted but I do have a small chuckle on occasion.
                                                                                                                                           Billie

Shy and introverted? I am still choking on my beverage.

[Risen]

Okay guys.

 

Need some advice.

I REALLY need a job. Having my own money and something to do would really help keep my mind off of things. Walmart's hiring for Part-Time, and I'm considering putting in an application. I start my Gleevec sometime this week and I'm afraid I'd get the job and not be able to do it, and I don't want other employers looking back at me missing a bunch of days and quitting if it came down to it. Should I hold off for the first few months of Gleevec or what?

[IGotCML]

Okay guys.

 

Need some advice.

I REALLY need a job. Having my own money and something to do would really help keep my mind off of things. Walmart's hiring for Part-Time, and I'm considering putting in an application. I start my Gleevec sometime this week and I'm afraid I'd get the job and not be able to do it, and I don't want other employers looking back at me missing a bunch of days and quitting if it came down to it. Should I hold off for the first few months of Gleevec or what?

 

Here is my 2 cents.  I agree with you that having money and work would help with the mental aspects of your recent diagnosis. You are going to have side effects from the Gleevec and you have a very high white blood cell count, so it is likely that the side effects will be stronger the first 2-3 months while Gleevec is destroying the extra white cells.  You may want to see how you handle the side effects first before you commit to a new job, even if it is part time.

[Marnie]

I didn't have much in the way of side effects from Gleevec that affected me at work, except for the need to have access to a bathroom at the drop of a hat.   Certainly there was fatigue, but I just pushed through it and it didn't change what I was able to do.  Everyone responds differently to their medications, however, so you will need to see how Gleevec affects you.  I would guess that you'll be just fine, but you won't know until you've been on TKIs for a little while.

 

Good luck.

[hannibellemo]

The only times I've missed work due to CML was during the initial diagnosis. Gleevec wasn't an issue for me in that respect (I was 58 at the time). I wanted to miss with Sprycel, but I just kept the door to my office closed...a lot! You really won't know until you get into it and see how you do on Gleevec. If it isn't crucial that you get a job right this minute it seems reasonable to hold off for a bit.

[Risen]

Will do, thanks guys.

I start tomorrow so I should be able to figure out what do by the end of the week.

I had another question, as I forgot to ask my doctor. Since my Gleevec comes in the mail tomorrow should I take my Hydrea In the morning? I only have enough for tonight's dosage, and then enough for in the morning if I should take it still.

[Marnie]

You should contact your oncologist to see what he/she wants you to do.  I would assume that once you start Gleevec he/she would want you to stop Hydrea. 

 

You are paying (a lot) for your oncologists' expertise, so don't be afraid to ask for information.  He/she should have been more clear about what to do with your medications.

 

Marnie

[hannibellemo]

I wouldn't take the last dose of Hydrea, it's not necessary, nasty stuff.  Remember to take the Gleevec with food, don't take it right before you go to bed - at least not in the beginning. Prepare for some kind of muscle cramping, learn never to stretch before getting out of bed! 

 

Hopefully, you will never even know you are taking it! But...if you should, let us know, most of us have had some kind of side effect with all of our TKIs and we can give some suggestions that may help!

 

It's sort of like having lots of parents and grandparents on this board. You have to decide if that is a good thing or a bad thing! 

[Risen]

Gotcha, I'm surprised Trey didn't come over here freaking out about the Hydrea, Lol.

Just got it from the UPS guy, Gunna eat breakfast momentarily and take my first dose, wish me luck.

 

What mg's are you guys taking? Mines 400.

 

Also, did anybody notice how many views this thread has? Jeez. 

[Risen]

Okay, I just got a call from my mom. I got the results back from my bloodwork, my WBC was 260,000 on Feb 16. As of Yesterday it's 87,000. On a scale of 1-10 how good of response is that? lol