Eye problems.

Hi John,

It is good to hear from you again although I am so sorry to read about Anita losing her sight. This disease can be so cruel sometimes and I am really sorry that this has happened. I do know that the “multiple” bit of multiple myeloma does refer to the disease being able to affect multiple parts of the body but I have not heard about it affecting eyes in this way before. 

I have bumped your post to the top to see if anyone else will notice it and be able to offer any more advice. For the time being, I just wanted to say that I am really sorry that this has happened.

Greg

Hi Gregg, hope your managing well and life is good for you and your family.

yes the eye thing was totally unexpected. Anita noticed a sharp deterioration in her left eye.

so off to the optician who told us she would have to be seen asap at the eye clinic. She described it as an eye stroke.

but afters scans etc etc at the clinic they said they were sorry but the sight was past saving. What they would do is start 7 weekly injections in her eye and monitor it as pressure develops that may cause her to lose the eye itself.

they said the plasma in the blood  vessels around the eye are through the myeloma.

took us a couple of days for it to hit us and start to think that Anita has been scored as free from myeloma in the blood & marrow and continues on the course.

then you put 2&2 together and realise it could hit her anywhere.

so contacted the “Trials Team” who said they would look into it straight away and also speak to the Dr who deals with it.

that was Monday and not a word back from them!!

not sure if to the layperson they know what an implementation this has on the patient.

we went to bed that night crying but now Anita is alive and initially that’s what matters today.

Cheers john

Hi John,

Sorry that you have not heard anything back from the trials team. I often find that one of the most frustrating things when you can’t get hold of someone but I hope you hear back soon as it is really important that the specialists can give you some advice as to what has happened and if there is anything else you can do to help things going forward. I’m sorry that I can’t offer any more practical advice on this, I only hope that the myeloma continues to stay in its box for a very long time and that you don’t have any other bad news as a result of it.

Greg

Hi gregg, you’ve been there forever us from the start which is 9mths now. I’ve got so much strength from your words during this time.

well, it’s our monthly bloods, see the Dr than a infusion day this Wednesday.

then yesterday morning the Retina Clinic rang asking anita to attend the clinic urgently at 8-30 this Wednesday so, scary as that maybe we will have more questions to put to Macmillan Ward.

many thanks 

john