[EttaParticipant]

Hi Jim and welcome,

Sorry about the delay, been a bit hectic this past couple of weeks!

My wife got diagnosed late August and she too is on the XI trial on CDT up in Preston. The levels are coming down every time we get checked (just starting the third cycle this week), so that's good. As everyone has said its pretty individual as to how people react so try and keep your chin up and do what feels right for yourself. Don't try to overdo things and drink plenty of fluids to protect your kidneys, something Etta hates but I keep badgering her :-).

Good luck with things.
Craig

[EttaParticipant]

Hi Sarah and Henry,

My wife Etta is going through the same thing at the moment but she's a few cycles behind you (just starting her third). She's finding it a bit hard going on the CDT treatment though as its leaving her very weak and she's sleeping lots.

They've told us to expect 6 cycles before the SCT so I'll be keeping an eye on your posts to see how Henry is coping and what to expect.

As the others have said, keep your chin up and if you feel like exploding just do it, you'll feel better for it afterwards!

Love
Craig

[EttaParticipant]

Thanks Eve and Bridget.

We've not had any contact with the Macmillan nurses yet, something that the district nurse was going to chase up for us. It's good to know that they are there to help sorting out the financial side for us as that's a worry at the moment.

We've been relying heavily on family and me taking days off at the moment but I lost it the other day when after 3 days nobody had got back to us, so I went on a non stop phone marathon. Got some practical help with with bath steps, shower seats etc, and finally kicked the backside of social services to come out to discuss help with care. I noticed they seemed to buck their ideas up when I mentioned the fact if we got no help I'd have to consider giving up work full time!

I will try to find out what's happening about the Macmillan nurse referral later on today then I can look into getting anything she is entitled too. I think I'm getting past the "too proud" stage now and going for the "sod it everyone else gets it" stage 🙂

Thanks again for the info, will keep you posted.
Craig

[EttaParticipant]

Good morning all,

Just to give an update. After being bed bound for 2 weeks (we had to get the doctor out who said she was just exhausted with not sleeping, so she gave her some sleeping tablets) we went to see our consultant today.

Good news the count is down from 1176 to 200. Over the bleeding moon! Doc was very pleased, a bit concerned with the lack of sleep so they're hanging fire on the Zometa in case that was the problem. Prescribed her some knockout pills for bedtime (she's snoring like a good one so they must be working) and carrying on with the treatment.

I just wanted to say thanks again for all the words of encouragement and to share the good news. Early days yet, but hey 🙂

Looked into getting some support today too, just things to make it easier for her, and hopefully to get some help for me too as I'm running out of holidays. Work have been great so far but there's only so much time I can take off, so now we need to see what assistance we can get when I'm not here.

I'll keep you posted, and chin up everyone!

Craig

[EttaParticipant]

Me again (and yes Debs it's Craig),

Well I think she's finally past the flu stage, it's been a yucky week for her feeling very drained and tired but not able to sleep. She says she feels very "shaky" inside, just managing catnaps throughout the day.

On the plus side towards the weekend she's been sleeping better, but only when I'm next to her (must be a comfort thing i suppose) but I'm going through books fast!

Many thanks for the well wishes and support from everyone. We're giving the trawling the Internet a miss as, like many of you have pointed out, you find a lot more info out from here.

Terry, thanks for the tip at 1/2 speed I will mention it next time we go.

Jo, Etta is 54, I'm sure she wouldn't mind me telling you 🙂

Anyway, it's pill taking time so just going sorting out her meds.
Thanks again everyone and keep well.

Craig

[EttaParticipant]

Hubby here….

We rang the helpline the hospital gave us this morning and they told us it sounds like she has mild flu symptoms from the Zometa and they will check back with us tomorrow morning to see how she's doing.

Thanks everyone for the advice, I think she's just a bit reluctant to let others fuss over her, but I keep telling her she's going to have good days and bad and that's what the helpline is for, to set her mind at ease!

On another note, is it normal for the consultant to [b]not[/b] tell you what stage she's at? When we asked (we'd read the Macmillan booklet about it when we found out) he just said he's not concerned about stages just about treating her. While that sounds good, you still get that nagging doubt in the back of your head that they're not telling you something for a reason.

Anyway, thanks again.

[EttaParticipant]

Thanks for the replies!

Eve: I'm on the CDT (tablet form). Got a whole heap of tablets to take some days, but only 8 on the none chemo and steroid days, plus the daily injection (which I was really nervous about doing but I'm getting there slowly).

Didn't get any of the anti-sickness ones (they're in my little red book) but she just said see how you go first so that will be a phone call this morning!

Mhnevill: Thanks, it might be just me with the Zometo I do tend to have strong reactions to tablets (even paracetamol make me dizzy!), hope yours goes OK for you.

Gill: LOL I've been trying to keep away from the internet, so many sites all at opposites so was glad when I came across this one dedicated to Myeloma. I had a trawl through some things first before joining and it looks good.

I'll let you all know how I get on 🙂
Etta

[Author]

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