Re: Eye infections and SCT -

[Guest guest]

- I hope you get to go home and enjoy a normal life. The work that was done in London is remarkable, I wonder if we could get that attention in the US. You kept saying a "this consult" and a "that consult", I fear here it would be like pulling teeth. It sounds like you made a wise choice of dealing with this in the UK.

This new development with the eye is a bit scary, but you seem to have it well in hand, and, hopefully, that too shall pass.

You both deserve a break and I wish it for you.

Please do keep us informed.

In a message dated 2/12/2010 4:36:21 P.M. Eastern Standard Time, naturalway@... writes:

Hello everyone,

My wife had developed spots on the retina which they thought were fungal spots and also had floaters in the left eye.

The opthalmology consult asked for by Prof Mackinnon led to the doctor performing a vitrectomy which removed the floaters and he injected an anti fungal into the eye.

All seemed to be going well, and last monday in the weekly clinic, Prof Mackinnon saw her and said she was doing well and we could go home as planned on the 19th of Feb. He said she now needs to be under the care of a BMT doctor in India for any problems, and we should contact him in case we had any problem so he could liase with the doctor in India.

we have to come back in June when they will do a chimera test and then decide on whether the lymphocytes from her sister need to be given or not at that time.

Today the blood tests showed HB down to 8.2 so they decided to top it up with 3 units of blood.

Neutrophils had come down to an ANC of .80 last week so they gave GCSF bi weekly and its all come to normal.

All other tests are normal. They have now put her onto low dose pencillin and acyclovir.

The chest specialist has said she should continue colomycin nebulisation for the bronchiectis and the cardiologist said the left ventricle has recovered but she should continue ramipril for another 3 months.

But then there is always the unexpected in life !

Life is never uneventful.

The retina surgeon wanted to see her twice a week and when we went on Tuesday to see him, he found she could not read the letters in the eye exam. On examining the eye he then found a new patch had come up on the retina which was causing the vision to be obscured in the left eye.

A scan was done of the retina with a dye to see if there was any inflamation and it was OK.

He asked her to go to another colleague of his for a second opinion.

All tests of the fluid taken from the eye during the vitrectomy have been negative. They had put her onto IV and then oral antifungal voricanazole for two weeks just in case it was a fungal infection.

But now the new patch on the retina does not seem to have any reason- it is not infected, they feel it may be a condition of the immune system reacting but no one seems to know.

An examination yesterday 4 days after the patch was discovered shows it hasnt increased and there is no inflamation

Both he and the other doctor he had asked for a second opinion say we should watch and wait.

They suggested maybe she could take medicine for CMV but Prof Mackinnon vetoed the idea said the medicine for CMV was strong and would create unnecessary side effects and in all the blood tests till now she was CMV negative and also the fluid from the eye was CMV negative and it was pointless giving the CMV medication just like that.

The other doctors on the team had said the same, said CMV retinitis is a clear condition and this did not conform to that pattern.

So all in all no one knows what has caused it .

Just have to wait and see.

Anyway we are now preparing to go home to Delhi next week and will then see a retina expert in Delhi on the 22nd when we get there. The doctor here has sent him his report and we are carrying the eye scans with us.

Any one had a similar condition?

Any suggestions on what it could be?

Best wishes and good health to all.

from DelhiWife diagnosed with CLL in 1997 at age 44,Fish del 13q, unmutated, Zap 70 positive2001 : Chlorambucil partial remmission2002 : RF 6 cycle . Acheived CR. Relapsed 2004.Feb 2008 - Oct 2008 : RFCcycle 1,2 FC, cycle 4 to 6 RFC cycle 7 Rituximab , cycle 8 RituximabRelapsed March 2009 - lymph nodes in abdomen, axilla and neck .Diagnosed now as Non Hodgekins Lymphoma - CLL / SLLAIHA in May 2009, resolved with prednisolone .Remission after Ofatumumab 8 cycles 2000 mg given 13th August to 8th October5th Nov 2009 Mini SCT at Royal Free in London under Prof Mackinnon, donor is sister - matched in 2002Post transplant day +100 :doing well dispite the hiccups! preparing to go home.