[keeponsmilingParticipant]

It's meant to just say hi all….not hi all-american!!! Predictive text :-S

[keeponsmilingParticipant]

*the upside is dad's kidneys are better* not the increase in chemo…. Obviously!!!! :-0 x

[keeponsmilingParticipant]

Fantastic news! Can't think of a better reason for a few sherberts! X

[keeponsmilingParticipant]

Oh i've got myself confused! :-S thank you Eve + Tom from newcomers forum and Dai from the general forum. My Dad is 69 and called Michael by the way. I'm one of 4 kids (can I still say that at 32!?) So he is well looked after/badgered! hugs to everyone. X

[keeponsmilingParticipant]

Hi Dai + Tom, thank you for your replies, dad is on velcade/dex and something else which begins with c! His full scan didn't show anything more than thinning around the thoracic region. Not sure how quickly things change? Second cycle is next week 🙁 Dai what is Zometa? jen x

[keeponsmilingParticipant]

Sorry I have posted in 2 places, didn't think first one had worked blimin' phone! :-S

[keeponsmilingParticipant]

Evening all, dad has just finished cycle 1 of 6 🙂 Pleased we are 1 down but bit sad as today was the worst i've seen him look, very tired and really thin 🙁 He also said his back hurt but he thought he'd slept funny but by 5pm this eve it still hurt and he couldn't manage to pick up my 19 month old little boy (although he is a bruiser!), so i've said to mum if its still bad tomorrow to maybe call the hospital? Also, just out of interest when and how will they be able to tell if dad's treatment is working? This is all so hard. My thoughts are with you all. I can feel a storm brewing here in very windy Eastbourne. X

[keeponsmilingParticipant]

Hi there, thank you for your replies. My Dad is being treated in Eastbourne District General in East Sussex, they have been brilliant. Dai you were right, a quick injection and we were off! It was good to have bben with him, because although he acts the clown sometimes, I think he was genuinely nervous today and sometimes they tell him things and he gets confused. Dad is doing really well, main thing is tiredness but at the moment not much else to report. Does the treatment build up and progressively make you feel worse, or would dad have started to feel bad already? The Dr said that his kidney function has improved too, so that is a great weight off. He did say that dad's light chain results have come back as 3,750. What does that mean? I get so frustrated with myself as I wish I could absorb and understand more, but this stuff is really difficult to get to grips with!!! Jen x

[keeponsmilingParticipant]

Good evening,
Thank you all so much for your lovely supportive replies. Dad is now home from hospital and is on day 9 of his first cycle of chemo. He is on the VCD chemo. He is feeling tired but not too bad at the moment. We met with dad's consultant and a specialist nurse who he will see at the day unit, he was very nice and went through things with us. They said that dad's bump was nothing to worry about, just a cyst (phew!!). The consultant gave us tons of information and no doubt I will have to ask him some of the things again. Eve, I did ask about staging but you are exactly right, they said they don't stage, he just said that he had high bone marrow content, 80%, I'm no doctor but that sounds like alot. He has lightchains too and they are waiting for a final result from Birmingham, but he is expecting that to be extremely high. They will monitor his kidneys closely as they were extremely bad when he was admitted. His skeletal xray didn't show any lesions, which I am beyond grateful for, but he has thinning of the bones around the thorax rib area, dad will be taking the drug to strengthen his bones but he can't start that at the moment as he required some dental treatment, which he has to have first.

We weren't aware that the hospital told dad back in 2008 that he had suspected MGUS. Dad has a pacemaker and before it was fitted he was back and forward with heart problems, I think he didn't really take in the severity of the situation at the time and for some unknown reason, no one has mentioned it since. I know we will need to find out what happened with that but at the moment it is all too much to comprehend so we are just dealing with one thing at a time. We have some issues with dad's memory so we have decided that dad will always be accompanied for medical appointments.

They have said that dad is ok to drive, how does/has everyone coped with that during chemo?

I think about this dreadful disease all the time and what the future holds, I have decided jnot to think further than the week I am in, although that is hard. I hope everyone else is ok, I am so grateful to hear views and advice no matter how hard it is to hear.

Thanks again, Jen x

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