Skin Liver GVHD low platelets

[Guest guest]

Hello Everyone,

I havent posted for quite some time as I have been over my head with many

problems that came up about my wife Neenos health over the past few months.

She seems to be running the gamut of all that could happen after the SCT! Hope

this is the last of it now.

Advice and inputs from those who have had similar problems will be very welcome.

Thank you Gretchen for your posts of concern about her, but I havent even had

time to read the list posts every day.

Our son is coming to Delhi to get married . His wife is a lovely chinese girl, a

phd from MIT, and her parents are also coming from China for the Indian wedding

we are having in early December.

So we are all out preparing for the wedding, besides being occupied in running

to doctors every now and then. So life is very exciting at the moment!

Since my last post, she has been given high dose DLI, which has led to GVHD of

the skin and liver. Before that came up, she developed inflamation in the left

eye that had problems before and lost all the vision in that eye. Besides that

her platelets seem to be falling every now and then and have never really

recovered ever since she developed AIHA again in August..

Our previous two visits to London were a disaster as far as getting the DLI is

concerned as in May she was on steroids for the Skin condition so the DLI could

not be given.

They tested her for MRD and found the CLL had increased in the blood and the

Chimerism test showed that it was still mixed

They planned to give a higher dose of the DLI but could not give it because she

was on steroids, apparently pyrednisolone negates the effect of the DLI So we

were told to go back and get off the steroids and come back.

She had developed Bullous wells cellulitis on her arms and legs and eosinophils

were 38%

Prof Mackinnon said she could take anything that did not contain steroids so we

came back to our Ayurvedic physician who gave her some herbs that controlled it.

We went back in August after stopping the steroids and she developed AIHA, and

the platelets fell to around 40,000. The doctors started her off on high dose

prednisolone and Rituximab, she had the first two doses in London and came back

and finished the next two doses back in Delhi - its much cheaper here!

Any way as they say third time lucky! ?

We went back to London on the 28th August after finishing her couse of Rituximab

and Prednisolone in Delhi

When we arrived there, she developed a fever and her left eye had a swelling.

The eye specialist in London said the eye had developed cataract which was

pressing on it and they could not see the infection inside so she should be

operated as soon as possible. Her platelets also suddenly fell to 28,000. She

was admitted in the Royal Free and the doctors put her onto the usual Meropenum

which sorted out the fever in a few days and then she was given the DLI on

Tuesday the 7th at the Royal Free in London

The doctor who administered it said they were giving a high dose as her CLL had

increased in the blood. .So she said that she may expect some GVHD as a result

of the dose.

At the Royal Free, it was a great coincidence to meet another ! He was in

the Outpatients room when we went there and asked if I was Singh, and said

he had read all my mails!

Such a small world!

We came back to Delhi and had the cataract operated here, the doctors were

very careful and fixed it up so that a retinal surgeon could be present along

with the surgeon for the cataract during the operation as they were concerned

that there may be complications during the surgery. They were worried that as

the eye was inflamed, and the previous vitrectomy of that eye could lead to

problems during the operation.

Fortunatley it went off well and the only thing they said they were sorry

they could do nothing about sight in the eye the sight as the retina had

atrophied after the retinal infection and now the optic nerve seemed to have

been affected.

She was put on a whole gamut of eye drops and the eye has healed though there is

no sight.

Well as she says at least it looks normal ! And she has the other eye to see

with!

Then everything was going well, but 6 weeks after the DLI she developed acute

skin GVHD .

In addition the liver fuction started getting worse .

The doctor here said they would try and control it with local steroid creams and

discussed it with Prof Mackinnon, but it kept increasing and eventually went to

what she said was Grade 3 covering most of the skin.

Apparently some GVHD is supposed ot be good, but she said she needs to be

carefully monitored.

Fortunately the doctor here is a haemotologist who worked at the Royal Marsden

and also worked with Prof Catovsky and is very experienced. Luckilly for us she

has located back to India and to Delhi .

But she said it was strange that the platelets keep falling every now and then.

In London they said it could not be ITP as when she was given platelets the

counts increased and then gradually started falling again after some time.

Finally after a few days the GVHD skin got worse, the doctor was monitoring it

almost daily and said if the skin startes breaking we should immediately come in

to hospital.

The liver enzymes also started increasing along with the bilirubin .

Eventually she was started off on IV methyl prednisolone for 3 days.

It immediatley put a stop to the skin getting worse and the liver function

started getting better.

Now the IV has been changed to oral prednisolone and is being reduced by 20 mg

every 3 days .They want to taper off as soon as possible so that the Graft

versus Leukemia effect can also happen.

Now the platelets have also suddenly dropped to 20,000

She has been advised daily monitoring and if they fall more then will give a

platelet infusion.

She has had 3 infusions of platelets now since end of August.

So thats about all for now.

Any one who has gone through any part of the above reactions, please do let us

know what happenned and what was done.

Best wishes and good health to all.

from Delhi

Wife diagnosed with CLL in 1997 at age 44,

Fish del 13q, unmutated, Zap 70 positive

2001 : Chlorambucil partial remmission

2002 : RF 6 cycle . Acheived CR.

Relapsed 2004.

Feb 2008 - Oct 2008 : RFC

cycle 1,2 FC, cycle 4 to 6 RFC cycle 7 Rituximab , cycle 8 Rituximab

Relapsed March 2009 - lymph nodes in abdomen, axilla and neck .

Diagnosis changed to Non Hodgekins Lymphoma - CLL / SLL

Previously it was only CLL.

AIHA in May 2009, resolved with prednisolone .

Remission after Ofatumumab 8 cycles of 2000 mg given 13th August to 8th

October

5th Nov 2009 Mini SCT from sister at Royal Free in London under Prof Mackinnon.

August 2010 AIHA treated with prednisolone and Rituximab

7th Sep 2010 High dose DLI given.

1st Nov 2010 developed skin and liver GVHD . Now on prednisolone