Gemcitabine treatment failure.

It became obvious to me a few weeks back that the Gemcitabine chemo was probably not working.
The enlarged nodes in my groin that initially shrunk with the first cycle had become a lot larger and my blood counts were failing to rally.

Today Sarah and I met with Dr Alwyn D'Souza and discussed where to from here.
He didn't pull any punches. If it were anyone else he would tell them it's time to give up.
His quandary is he knows that I'm not ready to give up and that puts him in the unenviable position of trying to find something that just might give me the window of remission I'm hoping for.

Things are pretty bad at the moment, the Gem has knocked me around quite a lot with the side effect of lung inflammation making me feel some nights that I'm climbing Mount Everest without Oxygen. (and that's with oxygen!) I do find myself pondering my situation in the wee small hours of the night and my fighting spirit tells me not to give up yet. There will come a time, as I explained to Alwyn, that I may well decide that enough is enough. I'm not at that point yet. He said a lot of patients would have by now.

I have a CT scan next Friday, that will confirm what we already know but will also help us re-stage and get a clearer picture of tumour mass etc. Then in about three weeks we will meet again and hopefully he will have come up with a novel treatment plan. If not and he decides he has done all he can. I'll look at other options. As I say we are not ready to give in just yet. There's a plan in my head of what the next year will bring and I'm focusing on that. It involves more quality time with Sarah, more sunny days soaking up the sun's rays at Foxton and more time appreciating all that I have and have had.

However just to prove I'm not in denial I have asked for a referral to the local hospice. Both for support for myself and to a greater extent Sarah.

The only good news to come out of today was that we are stopping the Gem chemo treatment. So short term I should start to feel slightly better, however the blood transfusions will continue.
In answer to a question about how long the transfusions could go on for in light of the fact that my bone marrow is shot. Alwyn said "for as long as you're alive" apparently they can't deny a patient that kind of support. I suppose that's one good thing.

Till later ..Ron

Ok so it's been a while..

I guess if I needed an excuse for not posting and keeping people up to date with my progress it would be that I'm just so darn fatigued.

I'm heading towards the end of cycle two of the Gemcitabine chemo, I had the second session on Wednesday last week and now have no more till next Wednesday.

I've been suffering horribly from lung problems and fatigue. If I stand up I become incredibly breathless and my heart rate becomes very rapid. Sometimes I feel like I'm on the verge of passing out. I've just re-read my blog from early 2009 and I had the same symptoms then, so I guess I shouldn't be too concerned. Perhaps I was expecting an easier ride this time round. Maybe it's just my memory, it blocks out such things and I find myself thinking everything was a breeze in the past.

Sarah and I went to the Cottage in Foxton Beach last weekend for a break. The weather was perfect and I soaked up the suns rays in the courtyard for a few hours. I'm sure I could actually feel the energy flowing into my body. Was very therapeutic.

Sunny Spring day at the Cottage, Foxton Beach.

 

I'm more than a little concerned about my lung function. It's pretty bad and I find that It's a lot more comfortable if I leave the oxygen connected as much as possible. The exception being when we have to drive anywhere like into hospital or up to Foxton. Once there it's straight back on otherwise I feel like I'm slowly suffocating. Coughing leaves me fighting for air. It's a horrible feeling and I have to admit it bothers me quite a lot.

 

Blood counts are still being chased with transfusions of both platelets and haemablobin (via whole blood) every Monday, Wednesday and Friday.

 

My weight is still pathetic at 61kg and refuses to rise much above that. Maybe once the chemo is finished? How long that will be is anyone's guess!

I see Dr D'Souza on Friday for an update, I'm hoping he has a new plan. I'll let you know..

 

..Ron