andyg replied to the topic WOW guess who got a "paraprotein not detected"? in the forum General 10 years, 10 months ago
That’s great news David.
Let’s hope it stays that way for a long time.
Every days a gift
Andy
andyg replied to the topic Swollen right Leg in the forum General 10 years, 10 months ago
Hi David.
Glad they’re on top of your DVT at last. As been pointed out its a well known side effect of Revlimid and all the Thalidomide based drugs. I’ve been on anti coagulants since diagnosis. Must of injected myself over 700 times. I’m now on Rivaroxaban so at least I’m not stabbing myself any more.
Every day is a gift.
Made more pleasant not…[Read more]
tonyf replied to the topic Final cycle, if all goes well, what are the options? in the forum Newcomers 10 years, 10 months ago
Hi both john b and carol.
Like both of you I was/am on the myeloma X1 trials.
Today is my one year SCT anniversary! Looking back some of it was a little troublesome, it took a few weeks before I was out and about, walking the dog etc. a year on my pps are at 1.9 I only visit the clinic very three months and opted for no mantainance drugs, so am…[Read more]
tonyf replied to the topic Face Mask in the forum Off topic 10 years, 10 months ago
A kiddies dressing up face mask!
Maybe you lost something in the translation! can’t wait to hear what you were given.
Tony F
tonyf started the topic Leicester Royal Infirmary in the forum Off topic 10 years, 10 months ago
Since diagnosis two and half years ago I have been treated at the LRI. Had my SCT and all treatment there.
Had my three monthly appointment at the clinic today and the whole system has changed, LRI now have a purpose built department for myeloma patients, wonderful, much more relaxed. They are in the process of totally refurbishing the day ward,…[Read more]
tonyf replied to the topic Buddy's wanted – Stem cell harvest – Dec 2013 in the forum Treatment 10 years, 10 months ago
Well done on the SCT. That’s the rough bit over and finished. I hope the following gives you some encouragement ( not that you need it!)
Tomorrow is my one year anniversary since my SCT, I am on the myeloma X1 trial, but I opted for no maintenance drugs. I visit the clinic every three months and today was the day! Since the SCT my pp has always…[Read more]
andyg replied to the topic New treatment starts today. in the forum Treatment 10 years, 10 months ago
Hi Elaine
I’ll look out for Bathams next time I’m shopping! Who am I kidding shopping lol. Though I will keep my eyes peeled for it and try it.
I’ve just had a stay in hospital and I’ve been taken off Pomalidomide till I recover from whatever was ailing me. I only had 3 of the little devils to take to finish my first cycle but a temperature 38.6…[Read more]
andyg started the topic Whoops! in the forum Treatment 10 years, 10 months ago
Hi everyone.
Just a little health update. I had a little trip that wasn’t planned last Wednesday. Steph says to me whilst watching tv “do you feel ok?” I said ” yes. Why?” ” you look a little flushed!” Out came the thermometer and it showed I had a temperature of 38.6! How did that creep up on me I don’t know! Anyway that was at 19:45 a phone and…[Read more]
andyg replied to the topic The guesswork that is myeloma treatment at present in the forum General 10 years, 10 months ago
Welcome to the horrible world of myeloma Dusk.
As someone who has not been on “great” myeloma journey I’m going to through my thoughts in the ring.
First at diagnosis aged 53 I was told myeloma is a very treatable but incurable disease. I was started on the usual CDT with the view of SCT a few months later.
Now to cut a longish story short I’m…[Read more]
andyg replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 10 months ago
Good luck today Tom as you set out on the next stage of your journey. I hope everything goes to plan and you are drug free again soon.
Don’t forget to keep on taking your vodka.
Every day is a gift
No matter the weather.
Andy xx
andyg replied to the topic New treatment starts today. in the forum Treatment 10 years, 10 months ago
Hi Liz.
My wife is from Grantham and has a house in Nottingham. So we go there quite often. Yes we go to the Nottingham beer festival when I’m fit enough it was a very wet visit in October.
I’m on my third week of my first cycle and as yet no major problems with side effects. Got the usual Dex effects – sleeplessness and moodiness
Every day is…[Read more]
andyg replied to the topic general update in the forum General 10 years, 10 months ago
Hi David.
The new site is having a lot of teething troubles. Stuart the web master is looking into them. He has a discussion page on the off topic forum and I know he is looking into the editing issue.
I get a cough and hiccups when I take my Dex I always have. I have to be careful when I drink as it sets me off hiccuping. I sometimes seem to…[Read more]
andyg replied to the topic New treatment starts today. in the forum Treatment 10 years, 10 months ago
Hiya David.
I hope your doing well with your treatments. I’m trying to catch up on everyone because it’s been difficult to get onto the forums lately.
The regime I’m on now is Pomalidomide for 21 days then 7 days off. With Dex taken on days 1,8,15&22. I have to go in for blood tests every week for 8 weeks to make sure I’m coping with the Pom and…[Read more]
andyg replied to the topic New treatment starts today. in the forum Treatment 10 years, 10 months ago
Hi All.
Thanks for all your good wishes.
I’ve finished my first week of Pomalidomide and yet have no complaints – well except for the usual Dex effect! My bloods were ok Friday but it’s too early to start counting my chickens yet.
It’s strange even though Revlimid had run it’s course I have been feeling the best I have these past 8 months since…[Read more]
andyg replied to the topic Pneumonia – but better now! in the forum General 10 years, 10 months ago
Hi Tina
Sorry read you were unwell over the holiday period. Good to know it was only a short stay in hospital.
I hope you have a good 2014
Every day is a gift
Live it to the full
Andy xx
andyg replied to the topic Switching the mind off in the forum General 10 years, 10 months ago
Hi Harmony
First off you could smoulder for years yet so try not and jump the gun. It’s easy to say but hard to do but you’ve got to live in the present not the future. As Eve says worrying about tomorrow spoils today.
I have no experience of counselling though my wife went and found it very helpful.
I was diagnosed in oct 2011 told MM was very…[Read more]
andyg replied to the topic New member in the forum Newcomers 10 years, 10 months ago
Hi Sarah
I was told to avoid certain foods too. I even think there’s a list on the MyelomaUK site of foods to avoid. As you say it’s pretty much the same advice given to pregnant women. Ie no live foods no unwashed or unpeeled fruit and veg and sea food is best avoided. The advice is given because we MMers have low immunities and a stomach bug is…[Read more]
andyg replied to the topic New look website in the forum Off topic 10 years, 10 months ago
Hi Stuart.
Mine is the same operating system as Liz’s.
Andy.
andyg replied to the topic New look website in the forum Off topic 10 years, 10 months ago
Hi Jean
The edit button is to the left of the reply button – oh it’s not there now!
Hmmm maybe you only have a limited time to edit posts on a iPad.
Time to dust down the laptop again?
Andy x
andyg replied to the topic New look website in the forum Off topic 10 years, 10 months ago
Hi Stuart.
Me again 😉
I’ve just done a post posted it and when I reread it I spotted a mistake and when I tried to edit it I found the whole post disappeared in the edit box when I tried to edit it!
Andy