Hi I am a father of a Myeloid Sarcoma patient who is going through her 3rd bout of this disease. We have just been informed that possibly due to her recent chemotherapy 5 weeks ago her vision has been affected to the point where she can only see with a blurred vision. Her MRI scan has shown an inflammation in the back of her head which is where the eyesight messages are processed. Has anyone heard of this before?
2 Likes
Hi @geoffwhite1952.gmail.com and welcome to the forum.
I hope others can share experiences but have copied on the @BloodCancerUK_Nurses as they may be able to help.
It must be really difficult for you all, both for your daughter going through it and you supporting her. 3 bouts as well, really tough.
How are you all doing?
1 Like
Hello there @geoffwhite1952.gmail.com
I am so sorry to hear that your daughter is going through such a challenging time. May I ask whether her Haematology team have said whether this inflammation is temporary that is leading to her reduced vision? This must be so distressing for her, has she been assessed by an Ophthalmologist?
Chemotherapy can lead to vision changes Your eyes and cancer drugs | Treatment for cancer | Cancer Research UK but as you mention this is a possible cause. There can be temporary vision changes due to low platelets and/or infection so it is important to know why this has happened.
May I ask whether your daughter has a Clinical Nurse Specialist that you can both talk to about this?
It is no wonder you are concerned. If it would be useful to talk this through, please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
3 Likes
My wife and I will hopefully know more tomorrow when we visit her at Addenbrookes tomorrow
3 Likes
Oh @geoffwhite1952.gmail.com I am so glad you have found us, welcome.
It must be so difficult for you as parents seeing your daughter go through her 3rd bout of this disease, it must feel never ending.
I hope someone will be able to share their experiences for you.
You have had great responses already.
Please do look after yourselves as well as you obviously are looking after your daughter.
Please do let us know how things are doing with you all
1 Like
Please keep us updated. Be thinking of you tomorrow x
3 Likes
Not much change today her bloods are still low, her temperature is okay, her vision according to her is everything seems dark.
My son Danny is there tomorrow to check he is ok to provide stem cells. Marsha has been told that they are going to give her another scan on her spine and neck regarding the inflammation at the back of her brain??
Thanks for your replies it is much appreciated
2 Likes
Oh @geoffwhite1952.gmail.com
Please do ley us know when you have any updates.
I am wondering how you are doing and feeling.
I hope your son’s tests go well tomorrow, I wonder how he is feeling.
I know that I would be feeling powerless and helpless and it has helped me posting how it really is being me on here.
Be very kind to yourselves.
1 Like
The doctor has cancelled my sons stem cell appointment and my daughter’s Bone Marrow transplant clinic appointment for tomorrow has also been cancelled as at this time we have no idea why??
1 Like
Oh @geoffwhite1952.gmail.com it’s the not knowing that always gets me.
I wonder what the best way of finding out is for you?
How did you find out about both cancellations, I presume your son told you that his appointment had been cancelled?
I am not sure how old Marsha is, and I wonder if you can get any further information from her?
Is Marsha young enough that Addenbrookes would talk to you?
If Marsha has a specialist nurse they can be a good contact.
When are you going to Addenbrookes?
Sorry to fire questions at you, it is in the hope that something gives the an idea of a way forward.
Be kind and look after yourselves in the meantime and please do let us know how you get on.
2 Likes
I’m so sorry to hear this. It must be very frustrating and upsetting for you all. Please keep us updated.
2 Likes