- Видео 4
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My CML Experience
Добавлен 13 окт 2018
My CML: Episode 4 - Tips for dealing with fatigue (and depression?)
Fatigue is a b****! Unfortunately it's something a lot of cancer sufferers have to deal with. Here are my tips for managing it based on my own experience with sprycel - what are yours??
Просмотров: 1 699
Видео
My CML: Episode 3 - a break from Sprycel
Просмотров 2,9 тыс.5 лет назад
Due to getting a blood clot near my chest, my docs took me off of Sprycel for 1 fabulous month!
My CML: Episode 2 - week 1 on Sprycel
Просмотров 2,9 тыс.6 лет назад
Vlog of my first week of taking sprycel - the ups and the downs!
My CML: Episode 1 - Diagnosis!
Просмотров 1,1 тыс.6 лет назад
Finding out I have Chronic Myeloid Leukaemia. Initial reaction and treatment plan
I am CML patient I take dasatinib 100 mg per day since December 2021 My BCR-ABL( RT PCR) 0.00 % with 1.5 year My location Jajpur, Rajasthan, india
Thank you. It's been a few years & I hope you're well. Appreciate this so much - you precisely describe my own sprycel experience. the fatigue - ouff. Interactions are draining - even with close friends. I'm a team lead of software developers, so need to juggle tasks/projects & lead meetings. Some days have had debilitating brain-fog. just keep going; bills need to get paid. Usually go to bed immediately after work. Used to be self-conscious of my big appetites. That's gone & find I really miss those old pleasures now. Doc lowered my dose from 100 to 70 to address the brain-fog which has helped a bit. Then, unrelated... baseball-sized mass found at base if spine - docs think unrelated to leukemia. Months of testing - PET, MRI, CT - still 'indeterminate etiology'. Starting to wonder if universe sending signs that it's near time to wrap this game up. 🙂 But thank you for this - it so helps to have the experience validated - it's not just my imagination.
I know this video is from 5 years ago, but I would love to hear an update. I was recently diagnosed with CML and I am on my first month of Sprycel. I found your videos helpful, just to hear from another person with CML etc. I know you haven't kept the channel active, but if you could just drop a message with how things are now for you and if you are still on the medicine, I would love to know as I am very early on this same journey. Also it would just be a relief to know that all is ok 5 years on (if that is the case). I am hoping that is the case!
But I want to quit it bad. Just the eating part pisses me off.
Since 2017, when I was diagnosed, I’ve been on Tasigna. Been under the number for 4 years with few side effects.
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.
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! ❤
First day on sprycell, coming from using Gleevec the past 10 years until it stopped working.I really hope this new drug doesn’t alter my life too much😢.
What ever became of this patients case?
SALAM SISTER HOW R U I AM PATIENT CML IN 2011 AND I AM USE IMATINIB100MG NAVID 🇵🇰🇵🇰🇵🇰
SALAM SISTER HOW R U I AM PATIENT CML IN 2011 AND I AM USE IMATINIB100MG NAVID 🇵🇰🇵🇰🇵🇰
How is ur health now
@@Moni4u ALLAH KA SUKAR HAI HOW ARE YOU ?
@@Moni4u SALAM HOW ARE YOU
Allah ki hifazat main thik hu 1 month pehle moje cml howa hain
@@Moni4u KAHAN S TREATMENT KARWA RARY HO AUR MEDICINE KON SI KHA RARY HO
SALAM SISTER HOW R U I AM USE IMATINIB 100MG TEST ABL BCR Navid 🇵🇰🇵🇰🇵🇰
how are you,im also cml patient,, from 2020, taking nilotinib fil.
Ma'am please can u talk to me.
Thank you for posting. I start Sprycel next week if insurance approves it.
I start mine tomorrow. I'm nervous
I am taking dasatinib 100 mg from 20 days I am suffering with huge stamock acid can u give me any information
How are you doing now??
Hi I hope you will be fine, I want to talk to you
Hi It's good to heard about experience. I like you living enthusiasm Good 👍 Do plz reply on vikaskumarinbox@gmail.com
I have gone through your experience, and want to talk to you, I also used spyrcell. It's good to continue with regular Yoga 🧘♀️
Are you still taking sprycl?
Just started today very tired.
how are you
I have been on dasatinib for 18 months. I basically flatlined at 0.3% at the 6 month mark and made no progress for the past year, so we're going to try nilotinib.
Same for me. How did nilotinib work out for you?
Hi, I've just been on imatinib again and can't handle the side effects very similar to how you have been. I'm now possibly going on sprycel. How are you doing now? Hope your ok x
The side effects on imatinib were very bad I do a lot of heavy lifting labor and it took me a long time to get them to change me to spycel , the side effects are better but I still have a lot of trouble in the heat and the fatigue is still rough
Do you use any special cream for the rash on your skin ?
Can I take the pill at bedtime
praying for your recovery!
looking great! so healthy. i hope you're still ok.
I want it medicines .how can I purchase .I am from India. but I am so poor I can't purchase medicine please give me some information for this. how can I purchased this medicine
Hey, I just got diagnosed with CML in December . I just started this drug. I was going to start filming my journey. Maybe we should all and start a little community on RUclips. I'm going to subscribe.
Thanks for the update! Can't wait for the next! I'm on week 3.
You're going to be ok. I'm 9 months in and I'm at complete molecular response. No sign of cancer in my blood. Just keep taking the medication everyday and on time!! Good luck
i have been on sprycel for 4 years now and still going through fatiqe they just put me on a differnt chemo med and thats been about three months now do you have a hard time paying for it they keep sending me sprycel if you need it unopened bottles
I’m going through testing for cml now. I’m so scared to be honest. Most what I come across online shows this cancer as being fine but when you actually see people comment on it who are battling it it’s not all bright colors and happiness. It’s a daily sickness battle. And it’s never going away. I just pray to God I’m gonna be okay. And I just want to say thanks so much for your videos definitely gave me some more insight on this cancer and the drugs. Wishing you the best 🙏🏻❤️
I've been on the medication since November 30 of 2018. I just had a check up yesterday and I'm at complete molecular response. That means they can't find any BCR-ABL genes in my blood. I know its scary as hell, but you're gonna be ok. Just keep taking the medication on time and every day.
Hi Steph. How did your test come out? If you don’t mind me asking
In my experience, you’ll live a good life. Had it since 2017. Just an adjustment. Cost is the biggest worry.
Cannabis oil with thc is a cure to many diseases & illnesses.
Dangerous chemotherapy drug.
Based on what you are saying that??
Depression does suck. I just try to stay busy as much as I can, but when I'm in bed late at night it bugs me. Never really got fatigue from it. I go to work mostly 8 hours 5 days a week. Sometimes overtime. After I get home from work I eat dinner than go to the gym 3 to 4 times a week. All I can say is stay positive. 👍
Cannabis oil with THC IS A CURE. WE NEED CURES, NOT TREATMENTS.
Snow123 THC ?
Snow123 THC?
Hydroxyurea shouldnt be prescribed to leukemia patients anyways. I wrote a letter to the state medical board. Doctor had prescribed Hydroxyurea to me. I sent an attachment & when my meds were once mailed, HYDOXYUREA WASNT IN THE BAG. MY FAM KEPT PUSHIN ME TO TAKE THE POISON ( THEY TRUST THE WHITE COATS 100%). I COULDNT TAKE IT.
I HAVE CML & WOULD NEVER TAKE SPRYCEL OR HYDROXYUREA. CANT CURE A DISEASE WITH POISON.
I work a 9 hour shift but I can't make it through the entire straight shift. I have to break it down and take the laptop home, fortunately my employer allows that. It's been about 4 months on Sprycel for me. I used to cook so much but now I don't even have motivation to do it due to the fatigue, so it's double damaging to not eat healthy for sure. I did get hospitalized though from going almost neutropenic. The doc took me off my 100 mg sprycel for just a few days and starting it back up makes me remember how bad the shortness of breath is.
That sounds really tough. I hope that your body does better on it after having a short break - that happened for me anyway. Is there any support you can get for things like cooking?
@@mycmlexperience9311 Thanks. I always hoped for shortness of breath to chill out but it never did (yet). When I did start the med though, I used to have 16 hours straight of headaches every time I took it but that lasted for a month so hopefully things do get better. I am fortune that my family lives a block away, so they've been spoiling me with taking care of my dogs for me (but who could resist huskies, anyway?) while I try to get my shit together. The food thing is a hit or miss because my appetite really did go haywire.
I've been on it since the end of November. It takes awhile for your body to adjust. I still get side effects. Bone and joint pain mostly. I like most people I've read about was taken off the meds for a little(8 days).
I'm about to start this med so thanks you much for your videos!
Good luck! I hope you do well with them
Don't be shocked if you have trouble with it at first. I've been on it since November 2018. The side effects are now starting to get better. I still have joint and bone pain from time to time. You'll do fine just give it some time.
You ever get the "sweet syndrome?"
I’m happy to find this. Everything else online about CML makes it sound like sunshine and rainbows if you just take this pill every day. It doesn’t show what it’s like for those of us that struggle through it.
True - I guess because the treatment is so much better than it used to be people tend to gloss over the not so positive aspects!
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.....
Thank you! Wow, 8 years....amazing. Good to hear that you've been on them for so long - must be working!
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.
@@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.
ContraBand Joe what dosage did you start on and are you still on that dosage
ContraBand Joe and thank you so much for replying so fast. I’m pretty scared.
Oh shit I just commented on your second video.
I came off because my platelet levels were lower than normal. But after 8 days I went back on. I like you got colds and had the flu. I was sick once a month. My heart rate was really high for hours after I took the pills too. This time it's just my legs that get swollen. A little joint pain but nothing really bad. Keep up updated
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
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!
@@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.
@@mycmlexperience9311 Hopefully you're doing well.
@@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...
@@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.
Hi. Hope all is going well with you. I've been living with cml since 97 or so. I've been on Sprycel for at least 6 or more yrs now. I took myself off of it for like 3 weeks once (would not recommend). Just felt like I needed a break. I can't lie I felt great as well. Didn't even realize how good I could feel without sprycel until I took that break. So I get it when you said, you got used to your new normal. It's just one of those things you have to experience to understand.
Hello I have a question how do you feel you stomach ? Like uncomfortable?
Hi sorry for being so late to respond. I haven’t had any stomach issues at all. Now I do have (every once in a while) slight constipation. Sometimes slight diarrhea. Very manageable though.
Oh I forgot to mention. I take my dose of sprycel just before bed also. That way if I do get an upset stomach, or anything like that. I just sleep through it.
I was diagnosed 20.november with cml 1.stage
What dosage are you taking I'm on 300 ml of tasigna
SALAM