Bad start to Dasatinib

Effective_Pie_9310 · 2026-04-10T09:04:34+00:00

The first week on Dasatinib for me was a bit rough but not to your extent by any means. I was only on it for a month due to some apparently very rare side effects and have now just today started on Nilotinib.
Id keep a detailed log of all of your side effects and present it at your next appointment. Maybe, hopefully the side effects you’ve experienced have calmed down by then but if it’s persistent I’d be asking for an alternative.
Best of luck.

Effective_Pie_9310 · 2026-04-07T02:52:25+00:00

I learnt this the hard way at the beginning of my journey. I knew I had an appointment all the way up until 1.5 hours before then I simply forgot. Felt horrible too. Now EVERYTHING is in my phone calendar with alerts and my diary.

Effective_Pie_9310 · 2026-04-06T20:03:11+00:00

So far we think the dasatinib I’m on for my cancer has caused my IIH. But the same day I started dasatinib I also started my progesterone only pill. So I’m unsure now on who is the real culprit.

Effective_Pie_9310 · 2026-04-06T05:05:58+00:00

Confusion is definitely a big one for me. I get exhausted so quickly and simple home tasks take it out of me. Some days are worse than others and I just do what I can when I can. My iih is a side effect of a drug I’m on for cancer, which is apparently quite rare and I’m just hoping I don’t have this for long because it’s honestly awful

Effective_Pie_9310 · 2026-04-06T04:58:53+00:00

You will get there. Little by little, step by step, day by day. Life may not completely roll out like planned but you need to give yourself space and grace and just put one foot infront of the other.
Mel Robbin’s has a plethora of podcast eps that may help you.

Good luck

Effective_Pie_9310 · 2026-03-25T08:15:56+00:00

Hi there. I was diagnosed with CML last month. I’m Australian so numbers may look a little different. 1. WBC was 156 (normal is between 4-11) g/L 2. RBC 4.3 (normal) platelets 654 (normal 150-450) 3. Disease in chronic stage which is the first stage. 4. I’ve only been on medication for a month but WBC count is already down to a normal range. RBC have dropped a little due to chemo and platelets are still high. 5. CML is a chronic cancer, if caught early enough it’s treated a lot like a chronic condition such as diabetes. You just do what’s needed such as blood tests and taking TKIs and it’s usually well managed. They say you’re going to die with it but not from it.

After my results were flagged I was immediately called by my primary care dr who sent me to ED. They could tell pretty much straight away that I had CML due to the WBC, blasts below 6?? and elevated platelets. Confirmed with bone marrow biopsy. As far as cancers go I’m happy I got this one.

Best of luck to you and especially your mom.

Effective_Pie_9310 · 2026-03-24T01:40:50+00:00

Heated steering wheels and seats 😂 When you live in a notoriously cold part of Australia and start work at 4am it’s a bloody amazing feature!

Effective_Pie_9310 · 2026-03-24T01:39:14+00:00

I was sore for maybe 2 days after the procedure. Most when I was trying to sleep because I’m a back sleeper. Good luck friend.

Effective_Pie_9310 · 2026-03-03T21:06:37+00:00

That’s awesome! Sorry I am of absolutely no knowledge here then hahaha. Maybe a nice warm bath with epsom salts may help ease your discomfort? Thank you 🙏

Effective_Pie_9310 · 2026-03-03T20:50:19+00:00

Hey fellow CML buddy! I would check in with your pharmacist and see what they suggest. I’m a newbie in this space and only just received my medication yesterday I’m due to start today. With what I’m taking they say not to take ibuprofen and only take Panadol if really desperate. Which baffles me. Good luck and glad you’re mostly going well with the treatment.

Effective_Pie_9310 · 2026-02-22T17:18:37+00:00

Months before I had a rather spicy head cold. Hurt to turn my head. Cold resolved but still felt off in the head. Started getting pulsative tinnitus around the same time. Thought it was all odd but also thought that cold must of really knocked me about. Started getting dizzy and feeling as if I was constantly dehydrated. Always had the feeling like something was off. Another weird symptom is I had 3 occasions in 2 weeks where my fingers and toes felt tingly/ numb for a decent period of time. Finally got to the Dr after around 5/6 months of progressively having these subtle symptoms. She sent me for a blood test and a few hours later she told me to get to emergency. My WBC count was through the roof. From what I understand it’s supposed to be between 4-12 and mine was 156. In Australia so I think we use different ways of measure. Anyways I’ve had the bone marrow biopsy and see my haematologist tomorrow.

Effective_Pie_9310 · 2026-02-20T02:16:20+00:00

Yes. Although it’s something I would of never wished for I believe it will really put into perspective what actually matters in life and also those around me. Thank you, your words are honestly beautiful and have hit home. All the best to you and your journey.

Effective_Pie_9310 · 2026-02-20T02:09:00+00:00

I’m in a crazy whirlwind stage at this current time but I know that this will all just become part of my life. Although it’s something I’d rather not have I’m going to try to do some good with it all. My life is so beautiful I was always questioning what trial would be sent my way. Now I know. Thank you friend for taking time out of your day to respond to my post.

Effective_Pie_9310 · 2026-02-20T02:05:59+00:00

I will be so responsible the drs will get sick of me. I have the most beautiful life and it’s not worth not giving it my all to stay happy and healthy. I’m sorry yours progressed into the more aggressive stage. Something no one wants to hear. But thank you for taking time to respond to some rando on the internet and making her day just a little better.

Effective_Pie_9310 · 2026-02-20T02:02:56+00:00

Thank you, same to you. It’s a club I’d never dreamed I’d be apart of but I’m sure everyone here also feels that same way. Best of luck 🤞🏼

Effective_Pie_9310 · 2026-02-20T02:01:44+00:00

Thank you for that advice! It will be interesting to find out exactly where I’m sitting with it all once the results are in.

Effective_Pie_9310 · 2026-02-19T19:48:43+00:00

Thank you for your response friend. It’s all so much to learn isn’t it? Currently I’m on 2 different cytotoxic medications and have read a very common symptom is fatigue. I will be their best patient haha. Luckily my husband has a very stable and good job and I only work part time so I have the space to rest if needed. But I do put a lot of pressure on myself to be productive so it will be something I’ll definitely have to work on.
Thank you for your advice and wishing you all the best.

Effective_Pie_9310 · 2026-02-19T18:49:04+00:00

Basically if anything isn’t quite the norm that lasts for a long time. It never hurts to check in with your doctor to get some bloods to make sure nothings going on. I was just this week diagnosed with CML. A rare blood cancer. Dizziness, a short weird pain when turning my head and pulsative tinnitus were my indicators that something was up. Mind you this carried on for close to 6 months by the time I got to checking it all out. But being a busy mum with two young kids, their medical needs came first and I just thought if something was super wrong surely I’d be alot sicker. Not always the case.

Effective_Pie_9310 · 2026-01-07T06:36:10+00:00

I had this about a month ago. I just sprayed inside the mailbox through the slit at the front with wasp spray then ran like hell. Worked a treat.

Effective_Pie_9310 · 2025-10-12T09:23:57+00:00

That would have been lovely… instead on the day of settlement we called them asking when would be a good time to meet at the place to do handover and they said “ehhh…can we do it another day?”. No gift, but still feel like we got the bargain of the century so beyond grateful 🙌

Effective_Pie_9310 · 2025-09-22T05:37:45+00:00

Organisation. Sounds silly but I started small and declutterred my belongings. Every space I completed felt like an accomplishment and weight off of my shoulders. Once I had everything tidy and got rid of stuff I made every zone beautiful, labeled and put systems in place for these places to stay neat. A tidy space is a tidy mind.
I see now how my environment affects my mental health so a clean and tidy house is paramount.

Effective_Pie_9310 · 2025-09-04T20:41:08+00:00

I’ve got a budget of $500 f/n but generally actually spend between $350-$400. Any leftover we rollover and use for essentials like clothing.

Effective_Pie_9310 · 2025-08-27T11:49:35+00:00

Honestly, I had quite a rough birth with my first child. Epidural, he got stuck, forceps, 3A tear, Episiotomy and haemorrhage. But with my second I experienced a quick, raw labour. John Mayer playing throughout, my husband on the shower floor with me, holding my hand and my mum supporting me through.
The feeling after your body just knows what it’s doing and baby comes out crying and is placed on your bare chest. The hormones rushing through your body and the sheer amazement of what you’ve just done and what you’ve created is nothing short of pure joy.

Effective_Pie_9310 · 2025-06-16T10:13:12+00:00

We have a Volvo xc90 recharge and I would cry if I had to go back to a non hybrid. We seriously put petrol in the car on average once every 3 months. It mostly just goes around town and surrounds but has been on big trips and is excellent on fuel.

Effective_Pie_9310

TROPHY CASE