[ed-209Participant]

Thanks, and thanks Pat that is reassuring, we all thought, I think most people do think that the syringe driver is pretty much immediate death, and when you still have your mind in full function it must be quite a horrid thing to be told.
Shall keep you posted, she is in the Renal unit at QA and shall see Dr Jenner on Tuesday if the lord allows her to still be with us, she told me she think she may have had a heart attack last night, and I do know women can have heart attacks in there sleep and not even no about.

But shall let you know how it all goes. Hopefully better news on Tuesday.

Peace and Love all.

[ed-209Participant]

She is still alive, they were talking about putting a Syringe Driver into her.

Is a funny story, she sees Dr Jenner now and he seems really good and has arranged for her to have kidney dialysis, well the GP phones today and said she needs a syringe driver it is all really confusing as I thought a syringe driver was given at the end of life but Dr Jenner has sorted out this dialysis so one day things are up and the next they are back down.

No one really knows what is going on, hopefully she lasts until her next appointment with the Myeloma Doctor.

I think the NHS is in trouble, with communication mainly, seems like a lot of people do there own thing and no one is accountable.

But thanks for sharing, shall also share progress as it goes on.

[ed-209Participant]

Hi, I am not sure what the results of the bone marrow test were, but she left the hospital 2 weeks ago and was told she had 2-7 days left, she is still here but the chemo has stopped, the hospice has been round with palliative care and they are giving her a little blood from time to time and steroids.

I think it was a little negligence by Winchester hospital but I guess we will never know, as they did not monitor the kidneys and the chemo and the myeloma that was pretty far gone when diagnosed has damage the kidney beyond repair maybe, yet they did not offer dialysis or anything.

I believe the kidney function is currently as low as 3%

She has been very cold and shaky.

[ed-209Participant]

She went to Winchester and then Basingstoke, never got a chance to speak with Dr Jenner,

The hospital said the type of Myeloma she has they only see maybe once every 2 years.

[ed-209Participant]

Hi thanks for the updates and good news,

I will update on her progress, she was transferred to Basingstoke hospital as Southampton is full but will go down there when a bed space is free.

Her Kidneys are currently at 10% even though the Myeloma is coming down and the doctors are saying she will be in hospital to at least Christmas, they do however say that she should get a remission.

Has anyone else spent so much time in Hospital? 4 Months seems along time, but I guess if she gets the remission it will be worth it, also does anyone know how low the Kidneys can go, a few days ago they were at 12 and after the round of aggressive chemo they have gone down a little, which might be down to the drugs.

Thanks Stu

[ed-209Participant]

Hi, what hospital is this in please?

I had a similar issue like this at Winchester.

[ed-209Participant]

Hi thanks for all the replies,

She finishes her first cycle of chemotherapy on Friday and the current hospital she is in have said there is nothing further they can do to improve the kidneys so she is being transferred to Southampton for a more aggressive round of chemotherapy. The current hospital has no specialists in the field of Myeloma and they basically conference call this guy from Southampton when they are stumpped. So hopefully it will be a case of which I have read in previous posts and threads that when the Plasma count comes down the kidneys improve, and apparently the cheamo she is on now has brought down the cancer cells a little.

The treatment they have been doing on her kidneys seems a little of a little however, they took her away from the gout drug that was part of round one and had her on a drip and told her to drink plenty of water. Yesterday they gave her a pint of fresh blood which has made them make the decision today that the hospital can not do any more and to Southampton she goes.

Is such a shame as she is so house proud and has such a beautiful garden, hope she gets to see it again. I am sure it is not end games yet, but currently is bad news after bad news, maybe this is all part of the journey, you know a month ago no one was even talking about cancer and in the last 3 weeks it seems to be getting worse.

Sorry to be bringing some negative views onto the message board, I guess it helps to vent and all the messages have been supportive, everyone is truly amazing and beautiful people.

Stu

[ed-209Participant]

I have some more information just in, she has been classed as High Risk and is going to Southampton Hospital for some more aggressive treatment, they also said they will be giving her some palliative pain relief, it sounds really really bleak, she is shocked and upset but is remaining strong and still hoping for a remission.

[ed-209Participant]

Thanks for all the replies,

She has been getting a bag of water put into her blood everyday and the weekly chemo has doubled up to twice a week. I think this is now her first full week in hospital with no real idea of when and if she will be getting out, but considering the condition she seems to be in good health, is however making a note about a very painful spine while in bed.

Thanks for the information, and yes it is acute kidney.

[ed-209Participant]

Hi thanks for the reply, I think the weekly one was bortezomib every Friday, however since she has been admitted to hospital this has become every Friday and Tuesday.

[ed-209Participant]

Hi thanks for the reply, she has Acute Kidney Injury and they want to keep her in hospital for 4-5 days, not sure if that time scale is normal or not.

Thanks for your reply, it is great support.

[ed-209Participant]

Hi thanks, the doctor thinks it could be a drug for gout that they are giving her, and she has a acute kidney injury, so I guess fairly serious doubled down with the Myeloma.

And also she is getting more drugs but goes into the hospital to get them administered, they are just the ones I know the names of.

[ed-209Participant]

I believe it is heavy chain,

She is on

Dexamethasone
Thaildomide
CO-Trimoxzole
Aciclovir
Clexane
Metoclopramide
Levofloxacin
AdCal
Allopurinol

Yes you are right about Kidneys, She was kept at Hospital last night and is in again tonight, was only diagnosed 2 weeks ago, hopefully she is not going to be one of the unlucky ones.
I have no idea about life expectancy as doctors say nothing, she is confused and maybe in a slight denial only wanting to hear the good news. As she is only 56, so pretty young in my opinion compared to what I hear from this illness.

Thanks for your message, and hopefully I will get some good news today.

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