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
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 chest infection soon clears so you can concentrate on fighting the dreaded MM.
All the best.
Andy
And Kev remember Tom's advice "the young ladies know best" 😉
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 find its better than been stuck with needles every week for blood tests and infusions. I have mine taped up so it just doesn't dangle though it is still a bit of a nuisance.
Hoping everyone coming up for their SCT has a successful and speedy recovery and a lengthy remission.
All the best
Andy
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 agree that helps. I'm looking forward to seeing Prof. Jackson and hearing his input.
Today I saw a consultant radiologist and I will be receiving some radiotherapy on my lower back – sacrum – next week hopefully. Which is quick work since my consultant only put the request through Friday afternoon!
Thanks once again friends for your support – it really does help.
Bring it on!
Andy
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 important indicator PP's or BMB I suspect it would be BMB. Guess I should start another question list 😉 My last MRI showed no further bone damage or lesions. Which is good. I'm looking forward to seeing Prof Jackson and getting his input and suggestions.
All the best.
Andy & Steph
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. Refractory is the stage after the remitting relapsing stage – I think. The main thing at the moment is to keep my pp's stable or reducing. I am at the moment feeling ok if it wasn't for my back and the way the drugs make me feel sometimes I wouldn't know I had this dreaded disease. Oh nearly forgot whilst trawling the Internet I came across a report on cases like mine where the drugs struggled to have an effect and the report said it could be down to genetics. I mentioned this to my consultant and she seemed to agree but said it wasn't something generally tested for in the UK but suggested I raise it with Prof Jackson. We'll see you for a coffee Helen if I get a Tuesday morning appointment.
All the best
Andy & Steph
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
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
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 😀
Pass my congratulations on to your son-in-law for his achievement I do like a drop of porter.
My PP levels are still proving very stubborn and are at last test 40 🙁 going to have a meeting with my consultant hopefully Friday to ask some scary – for me – questions.
I hope Peter is doing ok with his meds and staying strong.
We wish you both well and think of you both always.
Take care.
Lots of love Andy & Steph xxx
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 to avoid the "how long" question maybe it's time we found out – that's if they have an idea!
Keith I agree with you I should be playing a more active role in my treatment but not sure if I have enough information or insight – yet!
Vicki and Colin I admire the way you have tackled this horrible disease head on. I hope my strength holds up whilst I ask my questions – hopefully my wife will help 😉
Mari my PP's have never managed to get below 35. I started at 50 and was told a minimum reduction for SCT was 50%. I do have a brother and sister and they have been tested for matches – my brother wasn't a match still awaiting my sisters result. I will have to ask about trials.
Eve yes you have set the ball rolling and I thank you for that. It's about time I knew everything coming my way and how we can fight it. I'm waiting for a call to confirm my meeting with my consultant Friday. She's off till Thursday – doesn't she know there's a war with MM going on? 😀
Tom you always make me smile and give me a lift. I'll make it my aim that at least the Dr and my wife leave the consultation smiling.
Once again thank you all for your input and advice for a shy 😉 and slightly scared Andy on the road to enlightenment.
Any more suggestions would be gratefully received.
The fight goes on
Andy
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 suffering at least 18 months of back pain! My treatment to date hasn't been too successful my paraprotein levels have remained stubbornly high – around the 40 mark. So SCT is still a distant objective for me at the moment. That's my rant over 😉
Please use the forum as a sounding board – rant, rave, scream, ask questions and hopefully laugh too. You'll always get a reply and some support and you'll help others who don't post but just read the forum.
You'll soon find we're not members of this forum but friends 🙂
I hope everything goes well for you and your mum.
Take care and fight on
Andy
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
Andy
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
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 or they may reduce the dosage – either way we wish you well
Andy & Steph xx
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 wasn't a match still waiting on my sisters test.
Obviously a PP count near 0 as possible is the goal but a low 20's would be a start.
Eve I have been having similar thoughts recently – however once my PPs moved they have never been below 35 and have be stubbornly staying in the 35 – 41 range. I'm not sure if I'm falling foul of the NICE (good acronym) rules as I've not been on trails! I did have a BMB a few weeks ago after cycle 1 of Rev/Dex and nearly all my marrow had been wipe out though there was still Myeloma cells present. Guess I need a long chat with my consultant. I know at the moment I feel ok the only trouble I'm having is with my back – my last MRI showed no further damage and I think I don't get to many side effects.
Anyway the battle continues.
Take care all
Andy
