Hi David
Just want to wish you good luck for your journey with velcade.
Every day is a gift
Andy
Hi Jean.
I was told when I was diagnosed that although the delay in starting my treatment wasn't ideal it shouldn't effect my treatment or outcome. I had 18 months of back pain before I was diagnosed so how long I'd had MM before that is anyone's guess.
It's a good idea to take your list of questions with you and write down the answers given to each of them because if your anything like me you'll come out the consult and promptly forget everything that's been said. I know some actually record the meeting on a small digital recorder.
As to what questions to ask I would make sure you get phone numbers. Day case unit and ward – we have 24/7 access here so if I have any problems however minor I can ring in for advice. MM is no respecter of office hours.
Good luck on Thursday
Every day is a gift
Andy x
Hi Eve.
Slim does seem to be having a rollercoaster of a ride with his rotten mm. Hopefully he won't need to start treatment again soon. Though I can understand the thought – it's back let's get treatment started again straight away. The trouble is with limited drug options the longer you can put off treatment the longer those limited drugs have a chance to keep us in the game.
Says the man who rattled through nearly all the drug options in six months!
Keep battling away for Slim Eve, I know you will, and good luck with the next Bmb.
Every day is a gift
Andy xx
Hi Tom
It's good to know your temp is under control and the antibiotics are doing their job. It won't be long before your raising a glass or two of vodka in celebration. I'm sure Eve and I will join you with a little tipple of our own 😛
Every day is a gift
Andy – cheers
Hi all.
First of all can I thank you everyone for their support and good wishes. It's new terrority for me to have some good news 😀 not sure how to handle it lol. Though weirdly it has put more pressure on the next blood tests. Usually I can forget about them till nearer the time but this time I'm more conscious of them and hoping the last result wasn't a blip 😐 I'm very aware one swallow doesn't make a summer.
I think us MM'ers are a cautious lot. Don't get me wrong I'm very very happy at the moment and I am feeling the best I have done since diagnosis. We had a few drinks to celebrate over the weekend and I will have a few more when the effects of the latest dose of cyclophosphamide has worn off. Cheers 😉
On a more serious note I'm not sure what it means to my chances of a SCT my consultant hadn't totally ruled it out. Though as I understand it I am still unlikely to get to one. The reason given the last time we discussed it was that my bone marrow is too battered from all the drugs I've taken. The last Bmb showed I didn't have a lot of bone marrow at all. So to get to SCT I need to get my PP's right down and for them to stay very low without drugs for a longish period to give my bone marrow a chance to recover. Still you never know – I never thought I'd get my PP's this low. I'll have to wait till my next consult May 3rd to see what my consultant thinks and what plans she has for me.
So for now I'll keep taking the drugs, have a few drinks and look forward to our week in Greece next month all with my fingers crossed and my feet planted firmly on the ground.
Once again thanks everyone for your support and encouragement it means a lot.
As Tom says "onwards and upwards" or is that "I'll have another vodka"?
Good luck everyone.
Every day is a gift
Andy & Steph xx
Yeah – Tom is back. Watchout for those nasties >:-( hope you have a speedy recovery and can get back to the vodka! Soon 😀 Cheers.
Onwards and upwards
Every day is a gift
Andy
Hi Sue.
I'm sure you will find the ideal spot for Michaels ashes and you will be at peace with it. You mentioning the cricket ground brought back memories of scattering my Dads ashes several years ago. Funnily enough when we as a family were discussing where to scatter his ashes Scarborough was a strong candidate. Eventually we all came to the conclusion his ashes should scattered round a tree at the local bowling club, with their permission, where he spent most summer evenings and weekends. He is now close to his family and at his favourite place.
Love Andy xxx
Hi Gill.
What a fantastic photograph.
I'm sure it will provide you with plenty of smiles and quite a few tears in future but what a marvellous keepsake it will be.
Love Andy xxx
Hi Dai.
I've been on Zometa since October 2011 and I have it once every 4 weeks. It has two actions, I'm led to believe, one as a bone strengthener and another that it has been shown to work against Myeloma as well.
I haven't been through SCT so maybe my regime maybe a little different but I haven't been told I will be coming off Zometa though I still have 6 months to go to the 2 year mark.
I have read reports that question whether it should be stopped at two years or carried on. I think the jury is still out on that one at the moment so I guess it's all down to each individual consultant or hospitals policy. As always with myeloma everyones journey is different.
Every day is a gift
Andy
Hi Vicki and Eve.
I also use an iPad, the mini version in my case, and I find it a lot easier to post now 😉 mind you I was using an iPhone previously 😀
Hi Helen.
The sun does lift the spirits and I think the last trip we had to Greece gave me a real boost and I'm sure it gave me a new outlook to life.
Hi Jill.
I take my Revlamid at night because I find, like Thalidomide, it helps me get off to sleep – except for the Dex days :-/
Vicki I must confess I pinched my "new" mantra from a support group meeting.
Helen now that the weather has improved slightly we'll have to arrange to meet up for a coffee and a good old chin wag.
Every day is a gift
Andy xx
Hi.
Sorry I can't help with your concerns over doxorubicin in your mothers PAD regime. I can't recall anyone posting a problem with it either. The difference between liposomial Dox and ordinary Dox is that in liposomial Dox it is wrapped in a fatty covering to allow it to stay in the bloodstream longer and hence have more exposure to the myeloma and is kinder to healthy cells.
Now the velcade component is known for its side effects with PN being top of the list of complaints. It has now been licensed to be given sub-cut which is said to reduce the chances of PN. I only had two cycles of PAD unfortunately it didn't work for me.
A second opinion may help set your mind at rest though may not alter the recommended treatment path. I know my consultant doesn't treat me in isolation and she regularly discusses my treatment options with others. Including Prof Jackson who is a big supporter of MyelomaUK.
A phone call to Ellen at MyelomaUK will help and maybe set your mind at rest.
Every day is a gift
Andy x
Hi Richard.
Sorry I can't help with your HGV medical question. Since I've been on treatment for MM I have been reluctant to drive firstly because of my back it made it very uncomfortable and I doubted my ability to brake hard in an emergency. Then when my back improved so I was confident I could drive I found that I couldn't concentrate for very long whilst driving and I put this down to chemo brain. So now though I can legally drive I restrict myself to short journeys. So driving is another burden for my wife to shoulder.
Every day is a gift
Andy
Hi Rebecca.
I was told when I was diagnosed in Oct 2011 aged 51 that due my age, classed as young 😀 , and due to being fit, I ran marathons, I was lucky because they could attack my MM aggressively and get me to SCT quickly. Well here I am 18 months later after having everything but the kitchen sink thrown at my MM with my PP's still hovering around the 20's. SCT has now being almost ruled out for me. AutoSCT because my bone marrow is too battered to produce the required cells and AlloSct due to no suitable donor found to match me. I was referred onto Prof. Jackson, a national expert, and he said I had an aggressive form of MM and even if I did get to SCT the outcome may not be good. So I'm stuck with the drugs and I've been through most of them and they haven't been very successful.
I have bad bone damage to my spine with an op due in June. Having said all that I am feeling ok probably as good as any time since diagnosis and have been on my latest regime a year – RCD that is.
Now that's my tale of woe but I'm not typical I don't know of many on this site who have been so resistant to treatment as I have been. Everyone's journey is different some fly through to SCT but unfortunately quickly relapse others get to SCT and have fantastic results and long remissions. Everything to do with MM is a lottery though it seems the vast majority do manage to get to SCT. Some people manage quite well without SCT too.
My conclusion after a long Dex fuelled ramble is the younger and fitter you are the more aggressively they can attack the myeloma and hopefully eradicate it. This all depends though on the damage been done before diagnosis.
Newbies reading this post I must stress as far as I know I'm very untypical and although myeloma is at present not classed as curable it is very treatable and treatment is getting better all the time with new and better drugs.
All the best in your journey with MM Rebecca.
Every days a gift
Andy xx
Hi Dai.
Keith is married to a lovely woman. They're always together when I see them at the hospital for treatment or at the support group. I don't know if they have children.
Regarding his posts we've all been there when we are feeling a bit under the weather and can't be bothered posting. I myself don't post much now not because I'm not well it just doesn't feel right sometimes to tell my story of woe and little response to treatment. Especially to people just starting their journeys though I do read the posts nearly every day.
I'm sure everyone on the forum will be wishing Keith a speedy recovery and a return to the forum.
Every days a gift
Andy
Hi Tina.
I was at the day case unit Friday, Keith and I go to North Tees, and I asked about him. Of course they couldn't tell me anything about his condition but they let me know he was on the ward. As you may know he has been in and out of hospital since new year and regularly at the day case unt. I've recently gone from weekly visits to monthly visits so don't bump into him as often.
Everydays a gift
Andy xx
