10 replies to this topic

[snowboots]

After a healthy, no symptom, routine blood test on Jan. 22 my white blood cell count was at 90000. After a consult with a hematologist/oncologist, two more CBC's and a bone marrow biopsy to confirm, I was definitively diagnosed with CML on March 3. Thanks for Trey's insight on this forum I was armed with an argument against taking Hydroxyuea, but it wasn't necessary. My doctor put me on Gleevec 400 straight away. After more than a week of wrangling between the doc, the insurance company, and Walgreen's Specialty Pharmacy, I now have it in hand - well, some of it. They still only sent a 16 day supply instead of 30 after all the argument and approval. I guess they think they know more than the doctor. Nothing more frustrating than being told you will die without this drug and then the pharm arguing about it. How ironic that you can walk into a pharmacy and get a prescription filled for Oxycodone in 5 minutes.

Instructions from my doc - take it for a week and then come in for another blood count. Whatever the outcome you will be on this drug "for the rest of your life". A concept I have not completely accepted yet.

No mention of side effects or what might constitute and emergency reaction. No nutritional guidance, what to eat, or what to avoid. When I brought up vitamins or alkaline diets it was "pooh-poohed" as "not proven to have any effect". I have always tried to be my own health advocate. I am hoping that starting out feeling perfectly healthy will serve me well. After not taking so much as an aspirin for a headache, the thought of being on any drug forever is just so daunting. I have a wonderful local health food store with on-staff nutritionists who are willing to work with me - a great stress vitamin, and milk thistle tea for upset stomach if I need it. At the risk of sounding like a whiner, medical experience be damned. I don't think any doctor can fully appreciate the trauma of going through this unless they have experienced it themselves. That is why I am depending on you guys to help with some of the obstacles I may face on this journey.

Thanks for letting me vent today. I truly feel like this IS the first day of the rest of my life.

So, here goes. Down the hatch...

[Risen]

Hi Snowboots, I know how you're feeling. I'm on Day 3 of my Gleevec and haven't noticed really any side effects yet, but we'll see how that goes.

 

You'll find alot of help on these forums, as I'm sure you've already seen. They are very knowledgeable and seemingly go out of their way to explain things, it's really helpful and many times they've taken a weight off my shoulders. I was on Hydrea for the first few weeks, I started with a WBC of 300,000, on the 12th(?) of last month. As of Monday, I'm down to 87,000.

I know what you mean about it being daunting about having to take a medication for the rest of your life, but just think, It could be how it was back in the day where we only have about 5 years after Dx. Always look on the bright side of things, I've come to terms with it that way, joking about it every once in a while helps too! You gain a dark sense of humor, or atleast I did, well.. It elevated mine Lol.

 

It gets better, it really does. Hang in there, before you know it you'll be tired and sharting a bunch, from what I hear atleast. 

[snowboots]

Thanks Risen - I am glad to see that you are through the Hydrea and starting the Gleevec. Yes, this forum has already helped me so much. I'm still trying to pick up on all the abbreviations - FISH, PCR, BCR-ABL, etc.. We will learn as we go I guess. Thanks for responding - it's good to know we're in this together!

[gerry]

Hi snowboots,

Know how you feel, I had no sypmtoms others than a slightly raised Bashophil count. Took six months to get diagnosed from that.

I like to take a supplement, but tried to take most things away from the Gleevec. Watch the milk thistle as it assists with liver function and though it is a supplement, you don't need the Gleevec being processed too quickly out of your system. My pharmacist recommended staying away from anything that impacted liver function. I also started taking a probiotic, plus calcium and magenesium supplements.

 

When I took the initial dose, I lay down in bed, bucket beside me and waited, after 5 minutes nothing happened so got up and did something. Side effects will vary from person to person, level of side effects will vary from person to person. Some get hit with stuff straight away. I found things came and went, whilst muscle and joint issues gradually got worse.

 

On the positive side, they are working on new drugs all the time, they are running various trials in places and hopefully sooner rather than later they come up with a cure.

[snowboots]

What time of day do you guys take your Gleevec? Is any time of day better than another?

Thanks for the heads-up on the milk-thistle.

[Marnie]

I've also heard that you should avoid milk thistle. 

 

When I was on Gleevec, I took it at 7:00 p.m. with my dinner.  I tried splitting the dose to see if that helped with g.i. issues, but it did not, and I found  that the 1-time p.m. dose worked best for me.  I tried morning, but that was not good, as then I had to make too many dashes to the bathroom.  Sleeping on Gleevec worked great.  Be sure to eat it with a meal.

 

The directions are to avoid grapefruit, but many of us ignore that.  Blood oranges and other citrus typically have the same effect as grapefruit. 

 

I felt the same way as you do about a daily medication.  I rarely take pills.  However, I have gotten used to my 7:00 dose (of Sprycel, now), and it isn't traumatic.

 

Good luck!

Marnie

[Billie Murawski]

Hi Snowboots and Risen,

I so glad you finally got started on your meds you may or may not have side-effects but at least you have started your treatment and you can watch those numbers go down to zero! We are all here for you so whine,vent,ask any question forget modesty we have pretty much discussed EVERYTHING!

[gerry]

I wound up taking the Gleevec in the morning, used to get fluid retention at night and wind up feeling like I couldn't swallow in the middle of the night. Switched to morning due to this, fluid retention used to hit in the afternoon though as my work involves sitting at a desk for most of the day. But I felt better with puffy ankles then a closed throat. lol

 

Reason they tell you to avoid grapefruit is it can make the Gleevec hang around in your liver for longer which for some might increase your side effects. So if you don't suffer too much from side effects, feel free to munch on as many grapefruit as you feel like.

 

 

[Gail's]

Welcome to the group. Unfortunately you are here like the rest of us finding help with cml. I switched my gleevec from dinner to bedtime. It helped while I was having a lot of nausea. Fortunately most of the nausea is gone. A few other side effects I'm working thru but I'm also grateful that we have a longer life span with the TKI. I'm lately spending a lot of time figuring out if/when I can retire. I was already burned out at my job. Now this gives me a different perspective on how I want to spend my remaining years.

I hope you learn and enjoy this site as much as I have!

[carrie]

Snowboots,

 

I take my Gleevec right before going to bed, because after waking up at 5:00 a.m. and teaching all day, I am usually very tired, and I fall right alseep, so I do not feel the nausea.

 

The side effects vary from person to person. There is a topic called, "Side effect "fun"-what you got?" where people have listed their side effects to the different TKI's.

 

Yes, the rest of your life does seem like a very long time. I have been on Gleevec for 8 years now. Sometimes I just don't want to take it, but I remind myself that I am lucky to have an oral pill that keeps me alive. I am glad I do not have to do I.V. Chemotherapy.

 

This forum board is such a blessing. I have learned so much from people here. Way more than my doctor has time to explain.

 

You will spend lots of time in the beginning researching and reading. I don't read as much anymore. I just do bloodwork every 3 months and watch my PCR numbers.

 

Welcome, and don't worry about asking anything here.

Carrie

[chriskuo]

When I was having GI issues after starting Gleevec, I took the pill while eating oatmeal for breakfast. Whether as a result or coincidentally, my GI issues dropped dramatically.

My wife insists I eat almost entirely natural foos vs processed foods and that seems to help. If the TKI causes fluid retention, it is particularly important to watch sodium intake.