My CML: Episode 2 - week 1 on Sprycel

Vlog of my first week of taking sprycel - the ups and the downs!

[@contrabandjoe7974]

An Sprycel veteran here... Been on this medication since May, 2011. approaching 8 years.. I would be happy to answer any questions if you have any.....

[@mycmlexperience9311]

Thank you! Wow, 8 years....amazing. Good to hear that you've been on them for so long - must be working!

[@josueangeles89]

ContraBand Joe hello Sr I was recently diagnosed with CML and my dr wants to proscribe me sprycel. What symptoms did you have when you started? Thank you.

[@contrabandjoe7974]

@@josueangeles89 the first symptom I had was a constant headache. It lasted about 10 days. My hematologist said it was due to the Sprycel (TKI) killing off the bad white blood cells. Also had pretty intense fatigue and some night sweats. Fatigue is due to anemia as your white and red blood cells restore to normal. Night sweats caused by this also. All in all, the symptoms are manageable and go away within 10-14 days (if the meds are working and they will!). Only longterm symptom is fatigue but that subsides as well and is manageable.

[@josueangeles89]

ContraBand Joe what dosage did you start on and are you still on that dosage

[@josueangeles89]

ContraBand Joe and thank you so much for replying so fast. I’m pretty scared.

[@magnumcipher4971]

3 years of Sprycel here for ALL Leukemia. Bone and joint pain are the major side effects I experience. That and wired skin issues, rashes and bumps.

[@HarleyYaya20]

I am waiting for UPS to deliver my Sprycel. I was told to wean off my Lexapro because of a reaction of the 2. It's supposed to cause a heart arythmia and possible sudden death. 😮 I can't even start the sprycel until I do. Prayers up for all! ❤

[@vikaskumarinbox]

I have gone through your experience, and want to talk to you, I also used spyrcell. It's good to continue with regular Yoga 🧘‍♀️

[@ZeroChance21]

I start mine tomorrow. I'm nervous

[@hongkongirv3424]

Just started 3 weeks ago and my biggest issue is the morning headaches when waking up and tightness in the chest. My wbc count has dropped from 50 down to 16 -- Im juicing raw vegetables and have eliminated all sugars, carbohydrates and taking Vitamin D2 1.25mg which requires a prescription

[@mycmlexperience9311]

It sounds like it's working quite well for you so far! After about 5 weeks, my abc had dropped from about 54 to around 4, which was amazing! I had to get taken off though because I developed a blood clot near my heart. That's gone now, so the Doc has put me back on Sprycel as of yesterday.....here we go again. Have you found that changing your diet has helped with the side effects? Good luck!

[@user-pu4eg9cq9m]

You're still early in this. I too was taken off of it for a week because my platelet levels were lower than normal. Good luck and from my experience the side effects come and go.

[@abumansur2004]

how are you,im also cml patient,, from 2020, taking nilotinib fil.

[@leathermanfamily50]

Just started today very tired.

[@user-zj7vs4rt2l]

How are you doing now??

[@user-pu4eg9cq9m]

Hows it going now. I've been on the meds since beginning of December. I had problems when I started. Actually had to go off the pills for 8 days. Been back on them for awhile. My legs get swollen but no real side effects anymore. Keep us updated

[@mycmlexperience9311]

It's been up and down for me, recently better! I hope that you haven't had any serious side effects recently. I've just moved countries so seeing a new specialist on Friday...hoping for good news!

[@user-pu4eg9cq9m]

@@mycmlexperience9311 I got home from work yesterday and noticed I have a rash on both my legs. I'm sure this is a side effect.

[@user-pu4eg9cq9m]

@@mycmlexperience9311 Hopefully you're doing well.

[@contrabandjoe7974]

@@user-pu4eg9cq9m Rash is very common.. I've had it off & on since day one of this disease (8 years)... Not much you can do other than lotions, moisturizers etc.. Nothing to worry about. I had one large breakout a few years ago and went to a dermatologist. He did a biopsy that was negative, but did cost me $1000 dollars because he sent it to a specialist since I have CML...

[@user-pu4eg9cq9m]

@@contrabandjoe7974 My doctor's nurse practitioner wants me to come in this afternoon. I'm so sick of being sick. This is cancer number 2 for me. I had testicular cancer about 10 years ago. Had 2 operations and 4 months of chemotherapy.

[@davidgalvan7082]

Can I take the pill at bedtime

[@ashinautiyal2339]

Ma'am please can u talk to me.

[@Senovia3728]

Cannabis oil with THC IS A CURE. WE NEED CURES, NOT TREATMENTS.

[@tanveerahmed-ck3md]

Snow123 THC ?

[@royalpathania960]

Snow123 THC?