Hi Tina,

If I recall correctly Patrick had nearly a year on Bendamustin, is that right? 😐

I assume that his Nuetrofils never really came up that much during his Bendamustine treatment and he finally succumbed to infection due to being Neutrophenic and therefore unable to fight for himself and relied totally on the antibiotics.:-|

As…[Read more]

Hi Vicky & Colin,

I think it might be a case of the medics being a little too generous with the GCSF. They wanted to get his bloods flowing and his platelets growing, so GCSF was thought the best way. 😎

Now it seems that all is well with Colin's bloods but the after effects of the injections are hanging on… and you all have to wait…[Read more]

Hi Eve,

I suppose it is similar to any stressful job where you suppress your angst in order to carry on with the job in hand… your body couldn't afford to have these minor but painful problems before and almost the second the stress is lifted they are allowed to play havoc. Normally that occurs when you go on holiday… many women catch…[Read more]

Hi Karen,

It's good to see that you will be going through your SCT at the City Hospital, Nottingham. It is where I and several others here attend (I live 18 miles from the hospital one way and 12 miles from Grantham the other).

The City Hospital has a first class, purpose built Haematology Centre with a Day Case Unit (Where your stem…[Read more]

[quote][i]I know that I have to find my own "normality" but as my kids always said Stephen and I were "joined at the hip" My weaknesses were his strength and vice versa.

He has been dead for 2 months now and I still feel as though part of my body has been ripped away.[/i][/quote]

Hi Gill,

I can empathise with the idea of being 'joined at…[Read more]

Hi Kes,

Hopefully you will have MM for a long, long time (not something you would usually wish a cancer patient). 😉

Like Eva said, you could have MM for 10 years or more… a 5th of your life… it is with you now and it will never go away. There was Kes pre-MM and there is Kes post-MM… the old life has gone and you have to make a new…[Read more]

Hi Keith,

I understand the difficulties about getting on a Pomalidomide trial…. but how come the Bendamustine? It's not licensed… so there must be a trial of sorts.:-0

I have read extensively about both Pomalidomide and Bendamustine and both seem good with a median of 12/18 months and rising (as all new drugs seem to do…Revlimid had…[Read more]

Hi Keith,

I am looking forward to the results and I truly hope that the prognosis is carry on carrying on… with Rev & Dex… even if it means limping along with little change for good or ill, until one of the licensed drugs from America reaches Europe and the UK for licensing here.8-)

If not.. then what?:-0

My consultant was quite…[Read more]

Hi Vicki & Colin

Janet was with me for the Mephalan but then felt a cold coming on which turned into something akin to man flu… either way it meant she could bring in vital supplies to the nurse's station but no further… I didn't want to see anyone else so I set out for my SCT on my own. Janet was declared fit and well the day after my 0.1…[Read more]

Hi Vicki & Colin,

It's good to hear you are out of the bed and sleeping in the chair Colin… hopefully it will be your own chair and your own bed within the next few days or so. 😎 😀 🙂

You need to draw up an action plan for when you get home… who is allowed to visit, where you want to make your base for daytime hours… (I had/have…[Read more]

Hi Jo,

3 years 6 months from your CDT alone… that is impressive.:-D

I have said on here many times that my biggest regret of my treatment was not holding out for my full remission from the CDT treatment. 🙁

My consultant said it was 'a no brainer' to go for my SCT after my CDT but due to my Hickman Line infection which made me…[Read more]

Hi Sue,

I can easily understand and empathise with Michael… I always feel on the edge of a panic attack when Janet leaves me at the hospital. Silly as it sounds but every time she comes in from shopping or when she has been babysitting our two Grandchildren etc. my heart skips a beat… it's ridiculous but I get a warm feeling even when she…[Read more]

I imagine this last year has been very hard indeed… and you still have your husband's cancer to deal with… is he in remission or still on active treatment?

Your Mum did well given her age and not qualifying for a SCT but that is of little comfort when you have to deal with the grief of her passing.

I hope your family manage to pull…[Read more]

Hi Keith,

I have always had rather sensitive gums and have always used the softest bristles available.:-P

I too have had bleeding gums a few times in the past two years or so… but I don't recall if I was on treatment at the time… probably rather than possibly. An extra flurry of mouthwash regimes has cured it every time so I didn't…[Read more]

Hi Kez & Mel,

That sort of pain is both excruciating and very wearing… I know because I had similar pain accompanied by nasty spasms where I felt I could tear phone books in two! But the pain can and will be sorted… by short term high pain relief and a continuation of the lowering of Mel's PP's. 🙂

The pain apart, everything else…[Read more]

Hi Sue,

Thank you.:-)

We can only hope that Michael will respond to the AB's enough to get him home. I have been there enough times to know that the medics can usually find something that will work… and although Michael's position is substantially different these modern AI's are incredibly good.8-)

Every time that I have been in I…[Read more]

Hi Eva,

Thank you for your kind and supportive words.:-)

I am both appreciative and enlightened by your post… here is my position as I understand it.

I am not neutropenic as yet (Neutrofils 1.6 – the lowest in a while with an average of 2.0). I have been concerned by my low HGB (average over the past 4 months about 8.8… but I am…[Read more]

Hi Sue,

It's 1:30am and I came on board for no reason and every reason. Sometimes I just want to stay away and concentrate on my own condition and my own problems… I have enough to be going on with that's for sure.
But then again I also realise that I have made my commitment to this board, in good times and bad, to share, support, ask for…[Read more]

Hi Keith,

Only 20 minutes and 3 attempts by the same person to get my cannula in and then it went in easily and stayed in with no problems… so just a 5 hour day for me. The No. of beds/chairs taken up for transfusions has had its effect on the Day Case Unit and so they have shipped transfusions up to a large side-room off the Burns Unit,…[Read more]