andyg replied to the topic New Need to talk in the forum Carers 12 years, 4 months ago
Hi Teresa.
We over here would love some of your excess sun. Though I think the temperatures you are having to endure are not good. Apparently there is no immediate end to our damp and soggy weather in sight 🙁
I'm sorry to hear about Peter being in pain I hope they find the right meds to get him pain free ASAP.
I know when my back was…[Read more]
andyg replied to the topic Start stem cell in the forum Treatment 12 years, 4 months ago
Hi Etta.
I hope everything goes well with your collection and you get enough stem cells with your femoral line.
All the best
Andy x
andyg replied to the topic Update on kev's treatment in the forum Treatment 12 years, 4 months ago
Hi Liz & Kev
I think all us male MM suffers should follow Tom's advice because he is doing so well. Onwards and upwards eh Tom 😉
Backs are a major problem with MM and its good that Kev is getting a MRI ASAP. I've lost aprrox 3 inches in height due to damage to my spine and by the end of the day I'm struggling to stand upright.
I hope the…[Read more]
andyg replied to the topic Colin the sequel SCT in the forum Treatment 12 years, 4 months ago
Hi Vicki & Colin
I'm glad your hospital visit went well.
I imagine you must be looking forward to the SCT with mixed emotions as you say there will be ups and downs. Hopefully it will pass without any problems and you are soon looking back wondering what all the fuss was about.
Mari I've had my Hickman line fitted for a few months now and…[Read more]
andyg replied to the topic The Answers in the forum General 12 years, 4 months ago
Hi All.
Thanks for all your messages of support and encouragement. After a weekend of contemplation I am now back to my "normal" ? self 😉 I must admit I was a bit down with the outcome of Fridays meeting but I have moved on from there and now know a bit more of the battle ahead. I'm going to maintain a positive attitude because I think we all…[Read more]
andyg replied to the topic The Answers in the forum General 12 years, 4 months ago
Hi Keith & Sue.
My original BMB showed my marrow was packed with MM but my last one showed I had little bone marrow left! In the little holes where it was supposed to reside but around the outside there was MM cells. So even though there was less bad cells I didn't have many good cells. The one question i didnt ask was which was the more…[Read more]
andyg replied to the topic The Answers in the forum General 12 years, 4 months ago
Hi Eve, Mari and Helen.
It was a tough consult but on reflection a good one. There wasn't much about my condition she revealed that we didn't already suspect but it was good? to have our suspicions confirmed. Now we know what we are up against and can channel our energies to the fight. It will be good to have a second opinion and some new input.…[Read more]
andyg started the topic The Answers. in the forum General 12 years, 4 months ago
Hi all.
Time to report back from my question time with my consultant. First of all I've got to thank Dai as we used a lot of his suggestions.
Steph asked the questions and noted the answers.
The headlines of the meeting were that I have the bog standard version multiple myeloma. Unfortunately my reaction to the treatment todate is far from…[Read more]
andyg replied to the topic Of Carfilzomib… in the forum General 12 years, 4 months ago
Hi Dai
I don't know if you use twitter but after a bit of hunting you can find some very useful links to reports from the US on there. I find it very useful. I now follow several posters from the US and get the latest news from over there.
Andy
andyg replied to the topic Running an Ultra-Marathon for Myeloma… in the forum General 12 years, 4 months ago
Hi Alix
Good luck with your run and money raising. I used to run ordinary marathons before Myeloma damaged my back. I regret to say I only once ran for charity which I now regret. If only we could turn back time.
Once again good luck with the run and training – the hardest part! – and thanks for supporting Myeloma UK.
All the best
Andy
andyg started the topic A must read – in my opinion. in the forum General 12 years, 4 months ago
Hi everyone please read this article I think it's very good.
http://www.huffingtonpost.com/mobileweb/jeff-tomczek/cancer-advice_b_1628266.html
Pass it on to friends and loved ones I think it will help understand more. I know it's not Myeloma specific but to me applies to everyone dealing with cancer.
Take care
Andy
andyg replied to the topic New Need to talk in the forum Carers 12 years, 4 months ago
Hi Teresa
We had a great time in the lakes thanks. The weather was a bit wet but hey without the rain they'd be no lakes 😉 unfortunately my back was causing me a bit of trouble so we didn't get to walk far but the change of scenery did us a world of good. We've booked again for early September hopefully the sun will have turned up by then…[Read more]
andyg replied to the topic Question time in the forum General 12 years, 4 months ago
Hi All.
Many thanks for taking time out with all your suggestions.
Dai thank you for your thoughts and advice I found them very helpful and insightful and will base my meeting around your advice. I really like your posts and how much thought you must put into them I find them very informative and helpful.
David I think I have been trying…[Read more]
andyg started the topic Question time. in the forum General 12 years, 4 months ago
Hi all
I'm at the day unit Friday for my usual blood tests. I'm hoping to see my consultant too ask some questions. With my paraproteins staying stubbornly in the 35 – 40 range. I would like some input from my experienced and not so experienced friends on the questions I should be asking. I know I should of propably asked questions earlier but…[Read more]
andyg replied to the topic Hello My Name Is Alethea in the forum Newcomers 12 years, 4 months ago
Welcome to the forum Alethea.
None of us want to be here but here we are. You will find us a friendly bunch – sometimes funny sometimes sad but always supportive. We are all at different stages of this dreadful disease and everyone's journey and treatment is different. It's a very individual disease.
I myself was diagnosed October 2011 after…[Read more]
andyg replied to the topic Tiredness /Fatigue in the forum Treatment 12 years, 4 months ago
Hi Keith
I take my Rev just before bed. Can't remember if I was told to or I just assumed that was the right time because that's when I was told to take my thalidomide when I was on it. It may of been in the Rev box paperwork along with the side effects – I sometimes read them when I'm bored 😉
Hope everything turns out well this week…
andyg replied to the topic Hickman Line in the forum Treatment 12 years, 5 months ago
Hi Ali
When I had my Hickman line fitted it took approximately 30 mins start to finish. The longest part was waiting for a x-ray afterwards to unsure it was in the correct place. Mine was fitted at the day unit.
Andy
andyg replied to the topic Tiredness /Fatigue in the forum Treatment 12 years, 5 months ago
Hi Keith
Sorry your struggling with the Rev/Dex. I find I have half a day to do what I want to do then I get tired around 1pm and have to sit in front of the tv and fall asleep during the afternoon film. I haven't at any time felt like passing out though! Hopefully it is something that will pass.
You may improve as you become use to the drugs…[Read more]
andyg replied to the topic Back home in the forum General 12 years, 5 months ago
Hi all
Many thanks for all the replies 🙂
Dai when I was first diagnosed my PPs where 50 and I was told I had to achieve at least a 50% reduction before I would be considered for SCT. Wether that is still the case I will check when I next see my consultant. They have already tested my brother and sister for matches for a Allo SCT my brother…[Read more]
andyg started the topic Back home. in the forum General 12 years, 5 months ago
Hi everyone.
Just returned from our first trip away since diagnosed with MM in October. We had a lovely 3 night stay in the lake district. The weather wasn't the best but without some rain there would be no lakes 😉 We didn't venture too far as my back was not too good – but with some pain killers and a few beers we managed to have a good time.…[Read more]