[susannahParticipant]

Hi Just thought Id update you on Michael, he was admitted to hospital today, I rang the trial team at 9 am this morning as he had a temp of 39 and was shaking, they told us to report to the day centre which we did. After a very long day they found him a bed at 6pm i returned home at 8.30 this evening Michael is neutrpenic and has an infection somewhere? which is very worrying as this was said just over 2 years ago and he developed bacterial meningitis, He should be having his second cycle of Bendamustine next Friday, but it doesnt look as if it will be going ahead now so we will have to wait and see what happens next

Take care
Sue

[gina45Participant]

Hi Susannah, im sorry Michael is in hospital, my mum ended up in there weeks back with an infection. Hopefully they will be able to sort it out. At least he is in safe hands.Please let us know how he is doing and keep us updated, i will be thinking of you both
Take care
Gina xx

[eveParticipant]

Hi Susannah
I have been following you post,but as you are head of my husband ,have not posted,posting now just to say even though you don,t know me,I am wishing you all the best and hope you have Michael home soon.Eve

[mhnevillParticipant]

Hi Susannah

just to say that I hope Michael shakes off this infection and can resume the Trial soon.

Look after yourself. I know how much regular Hospital visiting took out of my husband.

Best wishes to you both.

Mavis

[MinParticipant]

Dear Susanah,
A very worrying time for you, and tiring too.
I hope Michael is back in his home with you very soon and feeling much better.
Love Min

[TinaParticipant]

Hi Sue,

I am thinking of you and Michael and know how you both must be feeling. Please don't despair IV antibiotics work wonders and together with a bit of luck Michael will be home soon.
Sending you strength and hugs.

Tina XX

[susannahParticipant]

Hi All Thank you allfor your kind replys. Michael still in hospital but the antibiotics seem to be working, they seem to think its because they caught the infection in its early stages. After a chest x ray the problem seems to be with a shadow on one of his lungs.

Thanks again
Sue x

[TinaParticipant]

Hi Sue,

Brilliant!!

Yes, the key is recognising the symptoms of an infection and getting to hospital as soon as you can. Unfortunately this may happen again with low neutrophils but best to be prepared.

All my best wishes

Tina X

[susannahParticipant]

Hi Sorry havent posted for a while but Michael only came out of hospital yesterday Hes been really poorly there still unsure why but his blood pressure has been dangerously low 70/54. The infection seems to be under control but there keeping a close eye on him. The trial has stopped for the moment to see if his bloods recover still neutropenic and his platletts are very low , hes already had 2 units of blood, so its a matter of wait and see.

I just wanted to add how sad i feel in reading about Gaye passing away,
the site seems all bad news at the moment,I find it hard to read some of the posts, everyone seems to be having such a bad time and I feel as though i should have more to offer, but I can feel myself getting lower and lower

Enough

God Bless you All
Sue

[brochoParticipant]

Hi Sue really good to hear Michael is home at last and they have got that infection under control You must be sp pleased to have him home but I bet you are exhausted , no wonder you feel low after having the worry of Michael being ill and hospital visiting him. I hope that you can both relax a little now and please try and make some time for yourself it must be so demanding watching your husband being poorly and putting all your energy into helping him feel better but you are just as important!! Does Michael have GCSF injections to help keep his platelet and neutraphil levels up, I have weekly injections as my neuts and platelets were very low and they have kept me on Revlimid Take care and love to you both Bridget x

[susannahParticipant]

Hi Bridget hope you are keeping well. Just back from the hospital Michael still cant have the Bendamustine as his platelets and neutraphils are
still very low, he cannot have anything to help him , platelets or GCSF injections as this is a condition of the trial. The worrying thing is how long do they wait, and what next. So we now have to wait until next Friday to try again

Take Care
Sue x

[TinaParticipant]

Hi Sue

Glad to hear Michael is back home but sorry to hear you his treatment may be compromised due to the low neuts and platelets. I believe the management of platelets will be a priority over anything else even if the trial cannot continue. Can't Michael have Bendamustine outside of the trial due to his curent circumstances? Patrick also had low counts but the consultant pressed on with the Bendamustine with good results.
There is still Pomalidomide and other trials coming up so try not to worry too much, enjoy each day together and stay positive

Look after yourself

Tina XX

[MinParticipant]

High Susanah
How dare they put Michael at risk because of a trial. If he needs platelets or neutraphils he needs them Full stop.
At what point will they intervene?
I believe the Dr's oath is First do no harm. I think you would do well to remind them of it.
Just as a matter of interest is it a condition of the trial that he has his Bendamustine every week or month or just when his blood results say he is well enough to have it?
Peter has had some unconventional treatment and he is having the suport of blood products to help him. I am not sure that reliance on them is the way forward but for now it is essential for his wellbeing.
He is having 2bags of blood tommorow though its not due until Monday but they decided that he would have a better weekend if he got it on Sturday instead.
Now that is thoughtful and for a change.
I hope your bearing up too as I know how worrying it is right now. Regards to Michael
MIn

[eveParticipant]

Hi Min
As you know Slims on clinical trials,and must admit some good some bad has come out of it.I do not think it is wholly for are well being.
First you have to ask yourself does the consultant feel so strongly that this medication is the best he can give: the answer should be yes
Second Is the consultant just interested in advancing his own cv.

The reason I ask this I know someone who goes private ,under the same consultant who backed these trials.
the medication given to this person is Velcade with the usual cd and zometa.
under trials you have to follow a route ctd or crd velcade is second line.

Therefore the consultant must feel Velcade offers the best chance,
but what choice do you have a consultant can not back the trials,and be pushing for Velcade to be used as first options.
I believe Cameron made a speech about cancer patients having the right to cancer drugs,i think he forgot to tell NICE.From what I have found out Velcade is used in Europe as first line. Eve

[susannahParticipant]

Hi All The Bendamustine is given two weeks on two weeks off, but he takes Thalidomide everyday, he has only had 1 cycle 2 has been stopped until his bloods recover with no medical intervention, once they recover he starts cycle 2. His consultant has told us if he has platelets the trial stops.

It seems to be Velcade and Revlimid all over again ( which we had to fight for as he was refused first time round) I know Bendamustine is used in other parts of the country, so why cant Michael have it without the trial.
This is what we need to ask next Friday if there is no change in his bloods

Hi Min hope Peter is feeling a little better

Take Care All

Suex

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