Newly diagnosed and looking for feedback on first few days taking tki pills

I am also newly diagnosed and on Day 21 are taking Imatinib. I continue to work three days a week and swim 2,000 metres three times a week. I have on a few occasions felt a little nauseated early morning about 30 minutes after taking Imatinib but this soon clears. Other side effects have been minimal. I have felt mild cramps in my legs on several occasions. I did have an unusual "kidney pain" one evening and went to bed and woke up the next morning feeling fine. I would say, however, that I feel generally subdued (rather than tired) and I have been going to bed one hour earlier.

David, thank you. I may need to slightly refine my timings premised upon your advice. But I am coping better in my third week. Stephen

Thank you.   Day two and sleep seems to be an issue as well.   

Onekayaker

Thank you, Onekayaker. Although I feel quite energised, it's as though I had gone to bed one night three weeks ago and woke up the next day five years older.  That's the best way of describing how I feel.

Everyone reacts differently, in their own unique way. I am on Sprycel, first 100, now 80.  I take the pill every morning at 9am, my iPhone gives the alarm.  If I didn’t have that reminder I would occasionally forget. I prefer the morning because I am usually in the same place, I noticed no change in the hours following the TKI. I know other people have.  I am also a responder slower than a turtle; whether this makes a difference with side effects no one seems to know.

100 mg was harder on me than 80.   Never had headaches or diarrhea.  I did have itchy skin, breakouts on my scalp, red itchy eyes and a lot of fatigue.  Off and on bone pain, but I have osteoarthritis and I cannot be sure what is causing the aches and pains. Sometimes the weather is to blame.

One really annoying side effect is what the TKI has done to my taste sense.  I was a good cook. Now almost everything I make tastes awful. My husband does not agree.  I no longer like beef, or chicken, or shrimp. Oatmeal is heaven as is vanilla ice cream. Fresh garden tomatoes are great, so are bananas.  I cannot deal with a good homemade tomato sauce...which used to be heaven. I am hypersensitive to salt. Lots of things taste rancid. 

Has anyone else had their taste affected?

your reactions might change as time goes by. 

Best wishes, Gitel

Oh I do take it at night with a large glass of water.    I have stayed mainly in my bedroom trying to nap during the day but can't catch a wink.   Been staying away from fatty foods.   My uric acid was up so I am taking a 300mg Allopurinol 1 hour before sprycel then I try to sleep.   Appreciate the feedback 

Onekayaker

Hi Onekayaker -

I'm surprised you were prescribed 100 mg Sprycel at M.D. Anderson. They were pioneers showing 50 mg should be the starting dose. You go up or down from there. I can appreciate that you need to follow your doctor's advice, but my doctor, also at M.D. Anderson, (I am also in Houston) who is a specialist in CML never started me at 100 mg. I take only 20 mg and I am PCRU (undetected). He said Sprycel is very potent and has major impact on the body other than CML. Talk to your doctor about lowering your dose so you can get over the side effects adjustment. You can always increase dose later if necessary. You have plenty of time given where your CML is currently (caught early). Keep in mind that more drug does mean more response. It doesn't work that way. It's a balance between your body naturally fighting CML along with Sprycel. Too much Sprycel and it actually inhibits your body's natural ability to fight the disease (suppression of T-cells). So each patient has to find their sweet spot. Most will do very well at 50 mg and have a worse response going up to 100 mg!

Since you are just starting - it is very important you test your blood counts weekly until your response is stable. One huge side effect of 100 mg Sprycel is myelosuppression. This is when your white blood cell count, platelets or other cell counts drop significantly below normal. Neutrophils, in particular, is the concern mostly. My Neutrophils dropped to dangerous levels in less than a week. I had to stop Sprycel during this time to allow for recovery. My doctor told me that I am very "sensitive" to Sprycel and that could be a good thing. Research shows patients who have a severe reaction to Sprycel in the form of myelosuppression can also have a very deep response to the drug on a very low dose.

I have no side effects that I can feel.

Your goal is to find the right dose that works for you. Lower is better IF lower works. It's that simple.

Track your blood counts - watch your Neutrophils, in particular, and if they fall too low - stop Sprycel, recover and then re-start on a much lower dose.

I was lowered to 20 mg and have never gone up since. I'm looking forward to stopping altogether after my next PCR test to see if I can stay "undetected" without Sprycel.

I found this forum and the former LLS forum to be very useful in the beginning when I was diagnosed for information on the latest research which I studied intently. These forums are more up to date on emerging protocols than most practicing oncologists. I have learned most "doctors" who are not experts in the field can mislead their patients and put them through unnecessary roller coaster with side effect management and proper dosing.

I contribute to the forum to give back what has been so useful to me over the years (diagnosed in 2010). It saddens me when I see patients receive bad advice from doctors who are truly ignorant of what CML management today requires.

The good news for you is that your CML was caught early. You will find over time that the 'thought' that you have cancer will fade away and you will return to a normal life again enjoying what you have always enjoyed. One benefit of CML - if you want to call it that - at least for me is that I took stock of my overall health as a result of my diagnosis. I am in better metabolic shape now than at any time in my life. I reversed heart disease, dropped weight back to my grad school days and have a fasting blood sugar around 78 when it was shooting up to around 110 (my family has diabetes). I no longer eat carbs except on celebration (relish those days). All of this has happened because of CML. So, in a small way - it may have saved my life as strange as that sounds. CML for me was a wake up call.

Make sure your vitamin D level is around 60 ng/ml - get a blood test to make sure. If not - take vitamin D3 supplements to increase it to that level. There is emerging research that vitamin D is vital to immune health. Mine at diagnosis was 17 ng/ml ... I had no defense against CML when it started. Eat more spices especially Curcumin (Turmeric) which have very strong anti-cancer properties (down regulates wild cell division). None of this are cures, just aids in helping your Sprycel do its job. And it is beneficial for other health reasons.

You will not die from CML - ever. It may be a pain in the neck from time to time, but over time it will fade. I focus on my heart health now not CML.

Hi Dawn - Ask your doctor if he/she is aware of the new protocol starting patients on 50 mg Sprycel.

http://www.bloodjournal.org/content/118/21/4440?sso-checked=true

(note the date of the above article: 2011 .... they knew then that 50 mg is effective with less side effects!)

http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e18551

If your doctor is not aware of the emerging research - make him aware of it. And then ask him why you shouldn't start at 50 mg and see how it works. You can always increase the dose.

Also - you have no blasts in the marrow - that is very good. That means you have a lot of time on your side to experiment with dose to get it right.

Watch your blood counts weekly. If they fall too much, you are very sensitive to Sprycel (and that can be a good thing). Your goal is to get to 20 mg daily - if you can. It's sad there are so many patients over prescribed and putting up with unnecessary side effects.

Scuba,

i did send a message to my leukemia doctor about the D3(learned this from your post).  Wanting to wait 30 days before I go on that.   When I joined I allowed people able to email me.   If you are willing pls email me.  I have some questions I would like to ask you 

thanks

Private messaging coming soon ... it's on the list of top priorities (after better spam management!).

David.