Feeling worried

[cartwheels]

Now those of you who know me will realise I never let anything get to me not even when I got dx or started treatment . But 5 weeks ago I had a turn whilst out and fainted had a in the side of my head and then went down went to AE and after around 5 hours I got seen and had a ECG test and they found nothing . I went away had a day off work as I felt weak and thought no more of it , but the headaches have continued and pain around the jaw ,eat went to the doctor's and dentist the doctors could see nothing wrong with my ear the dentist did mention it could be stress related due to grinding my teeth which I do and has made a appointment to go to the oral clinic at the hospital which I'm still waiting for but as the headaches have continued i saw my GP who has now ordered more bloods and a CT scan which I'm pleased about but it's the waiting I have lost weight but that might be down to the worry of it all I'm carrying on as normal work wise etc hopefully all this will be over something stupid but at the back of my mind I keep thinking maybe progression or something similar up until 5 weeks ago I was fine been on ibrutinib 2 years and bloods all great just need the services to hurry up

[maggiesgrandmom]

Hi Cartwheels, Could this be a delayed side effect of Ibrutinib? At 22 weeks on Ibrutinib I had so many cardiac symptoms but one weird thing was that I had terrible word recall. I couldn't finish sentences. Of course it all got better after I went off the Ibrutinib. I hope you get some answers.

[Panz]

I am just going to relay what happened to me. I had been having headaches which I just don’t normally have plus I was having some light headedness.....well one day I went outside to pick up the paper and promptly fainted which I never had done....I don’t really know how long I was out but when I came to I was laying on the pavers in a good size pool of blood, at first I could move but I was finally able to feel my head and discovered that was where the blood was coming from and it was bleeding hard...I was soon able to crawl up the front steps and managed to open the slider and yelled for my husband to quickly bring some bath towels as I was in trouble....thank goodness he only faints at the sight of his own blood. But I nearly lost him due to the volume he saw. My platelets were rather low and I knew with head wounds and the low platelets I would not get the bleed stopped. I sent him in for two more bath towels and we headed into the ER. I was able to get to my feet and I told him to get a large garbage bag and I took the 3 blood soaked bath towels with us. I had my head wrapped in a large beach towel.

We weren’t too far from the hospital. They worked for four hours to get the bleeding under control so they could see the injury. They did a CAT and ran labs and an EKG they found nothing. They finally released me and I had my husband take me to my Hematologist/Oncologist and she ran a complete iron work up and found my iron % of saturation was the lowest she had seen in ages and I promptly got my first iron infusion with a second one soon after. Yes the platelets were at 70 where they had been for sometime and we knew that but my hemoglobin was not low, however, my iron storage was very flat. I continued with iron infusions for about six months and I have been good ever since.

So I would strongly suggest they do a total iron work up on the iron storages. Good luck!

[studebaker]

So sorry for your loss and your anger is understandable. It is emotionally draining disease with ups and downs and a lot of uncertainty and fear. My doctor was certain my CLL/SLL mutated and seems relieved when biopsy comes back and there is no mutations. I am going for another biopsy in July and the toll these take on me and my family is huge.

I understand that it is equally difficult for families to live under the cloud of what is surprise the next appointment will bring.

Your brother was too young and possibly more should have been done for him.

Is it possible for you to discuss this with his doctor so you can find out?

All the best to you and your family

Studebaker 🇨🇦

[virdieblue]

Keep us updated. You'll be in out thoughts-