I wish i had more to offer than just my support and encouragement. Hopefully Cliff will see this and have some input on probable causes. you have probably already did this but carefully check all side effects of all the medicine she is taking. Did she have a transplant and has gvhd?

Sorry she has to go through this. Prayers for your mom and you.

Dave J.

Forgive me for not remembering but what exactly were her leg symptoms? I know that my son was constantly asked "any tingling, numbness or swelling?" as part of the "GVHD' check. Same with eyesight issues. Have they discussed GVHD as a possible cause of this? I am frustrated that you and your mother are going through this when she had been going so well. What "day" is she on post transplant? I know you are some distance away but I would definitely ask the doctors to get very aggressive in coming up with some answers, even if it means bringing in an outside consult/second opinion. I know you cant' get her to Sydney or Melbourne but her doctors can call the docs there.

Aussiemum, I went back and found the older posts on this and it seems like - just my take - her doctors are not being very aggressive in managing this. That would be where I'd focus. I know that Keir is asked all the time about numbness and tingling in his legs and eye problems as they are gvhd issues. He gets asked four times a week about these symptoms -twice by his advance practice nurse and twice by his transplant doctor at check ups. I have, obviously, no way of commenting intelligently on what your mom's particular issue could be but from your description she has gone from being able to walk quite well to being unable to walk at all - and that being a HUGE change, her doctors should be aggressively dealing with it. I'd get on them about it asap and push for answers, I know they have done a lot of tests but you are seeing a decline that you definitely don't want to continue so they need (imo) to MOVE to get answers. If they can't find them themselves, can she be gotten somewhere else that is perhaps more state of the art? Or a doctor from St Vincent's or somewhere comparable in Sydney?

thanks Dave and Lori.

At the moment they are ruling everything out it appears, which is great, but whilst this is happening things are getting worse.

Its very hard at times being a carer as such but being on the otherside of the big island.

It appears we have the main doctor stumped, which according to the senior nurse never happens, so mum's exceptional (uhhhhhhhhhhhhhhhhhhhhhh) ....

I know the doctors do what they can, they are looking up worldwide cases to see what it can be.

Every day mum says could it be the drugs, and she will carry on saying it. The cyclosporine has a numbness side effect but they still not ruling that out.

They are saying its not GVHD at the moment. ?

I don't want to interfere and I know their are 100's of other patients to deal with, but the most important one to me is obvious my mum.... the weekend will be here again soon and they will all go home for the weekend and say just sit around for another 2 days!

again sorry for venting !!

Aussiemum,

Please do not ever apologize for venting. Venting is what has kept most of us sane during this horrendous experience.

I too do not have a good handle on what is going on with your mother. With regard to her being bedridden, what exactly is the issue? Is she too weak to stand? Does she have sensation in her feet? Has she been eating and drinking well enough to maintain her body weight and hydration? What medications is she taking (especially prednisone). Being on steroids for a long time can cause steroid myopathy, a weakness especially of the proximal muscle groups, like the hip muscles. Does she have any stamina, or is she just exhausted and weak? Have her eyes been examined by an ophthalmologist to evaluate the retina and lenses. Steroids can also cause changes in the lenses (fluid retention) and ultimately cataracts (although it would be too fast for the latter).

Many of us, including me, developed some neuropathy because of the treatment. Mine is in the front part of my feet and my toes. They always have a numb feeling to some degree. They are better now than at first, when they hurt as well, but I am convinced that I will just have to live with the sensation, which is annoying, but not critical. Sometimes, drugs like high dose Ara-C can have a negative effect on the cerebellum, the part of the brain that has to do with balance, gait, and motor function. Does she have any of those symptoms?

The more you can tell me, the more I will have to work with as I do a literature search to see whether there have been good scientific papers on the subject.

In the meantime, is getting her physical therapy an option? Your Mum needs to get out of bed EVEN IF SHE DOES NOT WANT TO. Your job is to keep her moving as much as you can and be supportive and optimistic.

Let me know some of the details and I will work on it. PLEASE BE POSITIVE!!!

Cliff

Thanks everyone and Cliff for your responses. I will try and get mum to send through a list of her medications to give some sort of idea.

I will also then try and give a better indication on what is going on, or try and answer all the questions.

I guess formost is that whilst she is bedridden it is not cause she wants to or that she does not want to get up and about. She is getting up to go to toilet with the help of two nurses either side.

She also is making sure that she has all the physio that she can get, they are getting her up and about. She is 100% and more aware that she has to be keeping her strength up, and has in no way given up. She is actually very good at doing everything that has been told to her to do over the last 12 months and she follows it with maybe once every so often has a off day (where she will not go for a walk)

WE are always positive, just have down days..... but I always am positive to her over the phone.... you guys unfortunately get my venting sighs and yells.

The other day when she was sitting on the bed back of knees against the bed (so not just hanging on the bed) she said it was like her body just went like jelly and she slipped off the bed, this made her land on her knees quiet hard and now they think she has a fracture in the knee. This again will not stop her and she will make sure the physio is in twice a day if that helps.

She has had a ophthalmologist and just her normal optometrist check her eyes and all appears to be ok, they said there was no signs of anything wrong or advanced on cataracts. She was due for another test yesterday, but she wasn't allowed to go as she would have had to sit up in a chair they were not 100% happy with.

Will get the drug information and any more info I can think of and put it all in one spot :)

xxx

Aussiemum,

You and your Mum have always inspired me! Your Mum is such a fighter and such a compliant patient-it breaks my heart to here about this mystery complication. Your Mum has always been a tenacious walker, conservative germaphobe (I admire this trait) and eternal optimist. I remember when your Mum fought breast cancer in the midst of AML-OMGoodness, how much is enough? It saddens me to know how much she conquered to hear of this bewildering symptom. You are fighters and always optimisitc. Please know you are always in my prayers.

Blessings,

Julie

Aussiemum,

I was encouraged by what you posted. Your Mum will get through this, because she has determination. Get me the information and I will do the best I can to comment. However, I would bet that this is just one big speed bump that she will ultimately navigate and then coast on to better health.

Cliff

OK haven't got all the drugs, have to wait for Dad to get the list and send to me as they were at home (I didn't want to bother her too much)

Yesterday however for all your investigators for me ( if that's even a word ) they think she has Fludarabine toxicity.

Once again this is so rare they don't actually have too much information on it. It also appeared on cases where the patient had lots of other complications therefore they don't have much data.

Apart from this she has no other issues ie blood / heart / liver / kidney

Meetings with Neurologist today. Just hoping they can start her on a plan / drugs to help with repairing the nerve endings before they get any worse and have permanent damage.

Physio, were unable to have the legs moving enough to have her walk today, so everything is now in bed to keep some strength.

xoxo

Aussimum,

Has your Mum had an MRI? I imagine she has had one done, but I cannot recall the result. If she has fludarabine toxicity, there are some characteristic findings on this type of neuroimaging. Some types of this toxicity are reversible, and they all seem to involve the visual system. How is she doing now?

Cliff

Hi Cliff, she has had a couple of MRI's I think she had another yesterday. They have all been "clear"

This morning the neurology department and the BMT doctors are all meeting. Mum was meant to be at the meeting but they don't want to move her. there was another scan done yesterday, so maybe they redid the MRI thinking that they would look for the new findings

This morning the physio could not get her legs to hold her body weight so it was bed physio only.

Will let you know when I have heard back regarding this mornings meeting.

xoxo