[andygParticipant]

Hi Susie.

Its Dex that needs to be taken with food.  Cyclophosphamide needs lots of water.

I found that cyclophosphamide was worse for side effects than  Dex. It makes you feel sickly for a few days well it did in my case. It also killed my sense of smell and taste and it made concentration very hard. I stopped driving because of it and found reading books next to impossible. Food was very hard eat. I lost a bit of weight but found that eating little and often was the way to go. Spicy food was the only food that I could taste. Everything else tasted metallic.

You have to remember I was on RCD for 22 cycles so I guess the side effects for me gradually built up. I used to take my cyclophosphamide on a Sunday night so that by the next weekend I was feeling okish when my wife was home and we could pop to the pub for a drink. Not that I could drink much!

I didn’t take metroclopramide very often  as it gave me the runs. Though did come in handy a few times when I was bunged up!

I only took Dex 4 days on 3 days off for my first 4 cycles then it was reduced to just days 1-4 of each cycle. I’m not sure if that’s the standard treatment.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Stuart.

I posted a few times and I’ve had no problems with the predictive text.

The only problem I’ve come across is when I press return at the end of a paragraph the first letter doesn’t automatically capitalise on the new line.

Ah it does if I put a space after the full stop! Guess your never too old to learn something new.

Thanks for you help Stuart.

Andy.

[andygParticipant]

Hi Susie.

I found the first few cycles of chemo very bad and I think they made me feel quite ill. Have you been given Omeprazole to take before taking the Dex? It’s to protect you from stomach problems. Also don’t take the Dex on an empty stomach I take mine after eating. Cyclophosphamide needs to be taken with plenty of water.

You’ve probably been told all this but it’s worth repeating.

The Dex effect creeps up on you. Before you know it your eating more, doing more and sleeping less oh and in some cases getting bunged up! Everyone reacts differently some get moon faced others sweat a lot you might find yourself rabbiting on about nothing all the time you’ll get to know as time goes by what it’s doing to you. The post Dex crash will find you irritable and argumentative and possibly tired.

The most important thing is listen to your body if you feel tired rest up. If it’s the middle of the afternoon have a nap if that’s how you feel don’t push it. Check your temperature regularly and if it goes above 37.4 ring the day unit for advice. This is important because your immunitity will be low and infections are dangerous and need to be tackled ASAP.

You’ll be an expert on your treatment in no time.

Good luck.

 

Every day is a gift.

Andy xx

[andygParticipant]

Hi Susie.

I  was on 40mg of  Dex so that was 20 of the little blighters for four days! Fortunately they cover the nausea from the cyclophosomide  for the first week. The down side was the crash after you stop the Dex.

I’m still on 40mg of Dex and take the 20 little blighters every week! Though I’m not missing not taking the cyclophosomide .

I too take Rivaroxaban my consultant swapped me to them after I had injected myself nearly 800 times with tinzaparin.

Its hard at the start but you’ll get used to your regime and how it effects you. If you feel tired or lethargic rest up don’t try and do too much. Listen to your body. Hopefully you get good results and get to remission/SCT  quickly.

Every day is a gift

Andy xx

[andygParticipant]

Hi Andy

The general rule is to stop Zometa 3 months before any dental extractions due to the risk of osteonacrosis of the jaw. Exposed bone is the problem as it dies. I’ve not heard of anyone having a tooth extracted so soon after a Zometa infusion but there is exceptions to every rule. I do know you need a dental exam before SCT so I’m guessing the need for the SCT is greater than the risk of osteonacrosis of the jaw. I’ve managed to get it without any dental work done.

Every day is a gift

Andy

[andygParticipant]

I will do Stuart. It may take a while because I’m not posting as much lately as I used to  but I’ll try and give it some stick over the next few days

Thanks for your help.

Andy

[andygParticipant]

Hi Stuart.

Thats done the trick. I’ve now got the tool bar as per your image.

Andy

[andygParticipant]

Hi Stuart.
Tried it came back and it’s the same. Though strangely I didn’t have to sign in again.
Tried my wife’s full size iPad Air and that’s the same as this one.

Andy

[andygParticipant]

Hi Stuart.
This is my page.

[andygParticipant]

Hi Stuart.
I’m using an iPad mini version one with operating system IOS 7.1.2
Hope this helps
Andy

[andygParticipant]

Hi Stuart
I don’t seem to have that option. Unless I’m missing something.
Any help would be appreciated.

Andy

[andygParticipant]

I use predictive all the time Richard the only time I have any problems is on here. Changing and to bad! Why? Sometimes changing two word at the same time. Maybe it’s just me or the Dex effect lol.

[andygParticipant]

Just had to edit a lot of that last post! Bloody predictive text on here hasn’t improved any. It does make posting a pain sometimes.
Lizzie just checked with the wife and she says the telephone number is on the website.

Every day is a gift

Andy xx

Ps Lizzie phone number is 0845 2 307 155

• This reply was modified 10 years, 2 months ago by  andyg.

[andygParticipant]

Hi Lizzie.
I think I read somewhere that even “healthy” people can have a trace of paraproteins in their blood. So your doing great. Your in remission when your stable and your PPs are very low or not present. So I’d say a couple more blood tests with the same results and you’ll be classed as being in remission. Consultants do seem to be a bit more cautious these days.

The last few years we’ve been using nowicantravel.co.uk for our travel insurance and they’ve been very reasonable. Just got cover for our latest trip to Greece and it cost us £67 for both of us for the week. We deal with them over the phone when the wife wakes up I’ll ask her for the telephone number. Whenever we get insurance quote we do it via the phone rather than websites because the websites are too inflexible and a tick in the wrong box can be costly.
I’m not sure how soon after SCT your allowed to travel as I’ve never had one. I always get my consultants go ahead before I go and she keeps me supplied with some emergency drugs for when I’m away.

Enjoy a long remission and get back to being “normal” again.

Every day is a gift

Andy xx

• This reply was modified 10 years, 2 months ago by  andyg.

[andygParticipant]

Hi Babs.
I’m half way through my 9th cycle now. My PPs are stable for the moment.
It’s my steroid night but I will try and keep this post short and to the point and not ramble on to much! Oops there I go.
The steroids are the main down side of my Pom/Dex. I feel the best since I was diagnosed I’m eating and drinking well. I can actually taste things again. I’m also told I look well too.
I know what you mean about the pain relief when I’ve been hospitalised with back pain the drugs they gave me made me feel like a zombie I wasn’t interested in anything. I now try to limit the pain killers I take and when I need the big hitters I take them for a short a time as possible.

Hi Mavis.

Got a trip to Greece coming up and after that a trip to the lakes is also in the pipeline.
Every day is gift.

Andy xx

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