Hi Helen
That's my first week of my latest cycle complete so I'm over the ups and downs of Dex though I've just taken my latest cyclophosphamide tablets 😛
Glad to see everyone enjoying the sunny weather we brought back from Greece with us 😎 Yep I'm taking credit for the good weather lol.
I haven't heard anything from the hospital about the op yet – I thought I would of by now – hopefully a letter will be in the post this week. I'm not looking forward to it as it means an overnight stay in hospital. I've managed to avoid doing that for over a year now and I'm not keen to renew the acquaintance with hospital food.
I'm glad you and velcade seem to be getting along ok and hopefully it'll do the business for you and you get everything back under control again. I must say I find it hard to believe you are still managing to work! What a trooper. I find it very tiring just doing the garden a little at a time. Hmmm what I should say is I find it tiring supervising Steph doing the garden.
I will have to chat to Steph about popping up your way for a coffee soon it would probably be a weekend if that's ok with you.
Take care Helen
Every day is a gift
Love Andy & Steph xx
Hi Richard
There's an info sheet on plasmapheresis on the web site just stick it in the the search box if you can't find it.
Every day is a gift
Andy
Hi Christine.
Sorry I'm a bit tardy in answering your post but I've been trying to have a break from thinking about MM – some hope!
Anyway my PPs are stable at the moment around the 17 – 20 mark, fingers crossed for my latest results, and my consultant is reasonably happy if they stay around the level. I did have very high plasma content at one stage I can't remember the figure now but it was very high. After I tried DTPace I had a Bmb and that showed I had very little bone marrow left though the myeloma plasma was still present. I haven't had a Bmb for over a year now so I'm not sure how my bone marrow is getting on though I haven't had any new symptoms either.
When I saw the Prof. at Newcastle he was happy to leave me on my current regime and had no need to see me again until something changes. The Prof did mention trials that could be tried in the the future and also mentioned Carfilzomib and stated that was only available on a compassionate access scheme at that time. My understanding is that it's a strict entry process to get on to the scheme – they'll want good results so I don't know who it'll be available to. But I'll face that hurdle when I get to it.
There's lots of new drugs coming available in the USA and showing promise in trials hopefully the EU and British regulatory bodies don't hold up their availability to long over here though I won't hold my breath.
Work wise I haven't been there for two years now due to quite severe spinal damage and drug side effects – I keep expecting the knock on the door telling me they are finishing me. I don't receive any wages though I do still receive holiday pay which comes in handy.
Training your brain to live for today is hard after all your always told to work, save and plan for the future!
Wishing you all the best and hoping they find the magic bullet for Chris.
Every day is a gift
Andy & Steph xxx
PS Vicki and Colin we did have a great time thanks – busy planning our next trip err trips whilst waiting pensively for the latest PP's results.
Hi David.
I had a great time in Greece didn't do to much just sat by the pool reading, relaxing and having the occasional beer – 😎 in the sun. I didn't come back with any infections this time so that was a relief.
We're planning on going back again in September and maybe fitting a little trip to Belgium before then. Oh and got a few days booked in the lakes in October. All subject to my health being ok.
Strangely I found it hard to keep to my drug regime whilst away but I did manage to take then all but maybe sometimes a bit late. Took my drugs and syringes in my hand luggage, so I could keep my beady eye on them so they didn't get lost, and also a couple of letters from my consultant 1 to get me through passport control 2 a note for a doctor if I needed treatment. Oh my consultant also prescribed me some additional "just in case" drugs my bag did rattle a bit 😀
David I hope that velcade does the trick and you can get the passport out and flash it around the world.
Helen you made me blush! Me a star? Reminds me of my footy days lol I wasn't a star then either 🙁
Every day is a gift
Andy
Hi Tom
I've been on cyclophosphamide for over a year now and I guess I'm used to feeling crappy for a few days. My neutrophils very rarely manage to get above 1.0 so I'm neutropenic most of the time my last reading was 0.8 but as Dai often says "whatever it takes"
Good luck with your harvest and I hope you have a very successful SCT.
Every day is a gift
Andy
Hi Helen.
Welcome back to the joys of Dex!
I've been busy catching up on the posts tonight as I've tried to ignore MM the past couple of weeks – don't think I quite managed but I did try.
We had a great time relaxing in the the sun for a week in Greece and I managed to get back without bringing any bugs with me this time – a result! After last years trip. Spent last week recharging my batteries hopefully for another trip somewhere sometime.
I was back to earth with a bump Thursday with blood tests, zometa infusion and a carrier bag full of drugs for cycle 16. Friday saw me at a pre-admission clinic re me back op. then we went down to Nottingham for the weekend the help Steph's dad celebrate his 80th. I start my cycles on Sundays so I'm having my first Dex night.
I can't remember to much about my velcade experience, I was on PAD, I only had 2 cycles if I remember correctly with no response. I had it in the olden days when you received the velcade by infusion. I can't remember how long my appointments took but because I was on PAD I had a Hickman line in and that needed cleaning and I also needed my doxorubicin bottle to be fitted so that passed the time. I do remember the seats were comfortable in the chemo day unit and we had a conservatory to wait in and we had a plentiful supply of free tea, coffee, juice and even free water!
I think the size of the chemo day unit and hospital will have a lot to do with the waiting times. Our hospitals day case unit is small and the chemo day unit is not too much bigger so I think maybe its a bit more of a personal service and you don't get shifted to a waiting room whilst waiting for blood tests. You get to chat to people because your next to the same group of people whilst your there. My monthly zometa and blood tests usually takes about 90mins – 2 hours if a consult is thrown in.
That's my Dex fuelled ramble done for the night I'll check this post in the morning to see if it makes sense.
Whoops almost forgot we're both wishing you well Helen with your velcade experience and hope it works well and you don't get any of the dreaded PN side effects.
Every day is a gift
Andy & Steph xxx
Hiya Pauline & Marc.
Welcome to the forum, sorry that you've had to join, you'll find lots of advice and support here.
A brief history of my case – I'm 54 and was diagnosed Oct 2011 after approximately 18 months of back pain. I was told I probably had MM 3 days before our wedding! At the first meeting with my consultant I was informed the MM was very treatable but not curable. However my case has turned out to be reluctant to conform with the norm. I went through all the standard and not so standard treatments with little or no success which ruled out me having a Auto Sct (self) I was put forward for a Allo Sct (donor) but no suitable match was found. I'm now on RCD and have for 14 months which is keeping my paraproteins steady – 20 months total up to now of strong drugs! Having said all that I'm feeling at my best now since diagnosis. Got an appointment for some back surgery winging its way to me at this moment I hope.
My case is rare may even be very rare as I've not come across many with similar histories as mine either here or at the local support group. Everyone's treatment response is different and their journey to Sct is different some get there quickly some take a bit more time to get there and me? guess I'm a bit different 😉 everyone's journey is different.
We've just returned from a holiday in Greece and we had a great time so normal things are possible once you settle down and get used to living with MM as you Pauline will hopefully of experienced getting used to living with MS.
Your both at the start of the MM journey which is frightening, scarey and often feels very lonely. Here you'll find advice and support no matter how trivial you think the question ask it here and you'll get a reply – well several replies. If you want to shout and scream this is the place to do it we will all try to help if we can or point you in the right direction to find the help you need be it medical, emotional or financial.
I wish you both well on your individual journeys and hope to have your company on this forum for a long time.
Every day is a gift
Andy xx
Hi all.
I sometimes struggle to get the required fluid through me :-0 it's hard drinking water with all those drugs affecting your taste buds. Tea, coffee and juices help but I find that beer 😛 works well for me when my drug regime allows – hic, cheers and yamas. 😎
Every day is a gift.
A sober Andy.
Hi Dai and Chris
Dai is right I've been through most the standard and some not so standard treatments to no avail. My PP's stubbornly remained in the mid 30's. The criteria I was given at the start of treatment, when my PP's were 50, to get to SCT was at least a 50% reduction in PP levels. So that would of put me in the lower 20's bracket. Anyway that wasn't achieved and by the time I got to see the Prof in Newcastle autoSCT had been ruled out due to the amount of chemo I'd had, 12 months worth, damaging my bone marrow to much. At one stage I had very little bone marrow left. I was then put forward for an alloSCT as a matter of urgency by the Prof and a match was found but deemed not "good enough" for me to survive the process. So here I am 20 months post diagnosis still taking toxic drugs, I'm on cycle 15 of RCD, not knowing what will kill me first the drugs or MM, my PP's are hovering around the 20 mark and my Neuts are steady 0.9 – 1.0 so I'm borderline Neutropenic all the time.
Having said all that I'm feeling at my best since diagnosis and I'm presently by the pool in Greece just about to enjoy a cold beer. We've learnt to make the best of now and not to worry about tomorrow. Who knows what the future holds. Till then I'll keep taking the drugs with crossed fingers and we'll enjoy life the best we can.
Mine isn't a typical case but there again everyone's journey is individual all we have in common is we have to learn to live with MM as best we can and people do live with MM for a long time.
Best of luck with Chris's treatment and don't give up hope.
Right it's time for that beer – Yamas
Every day is a gift
Andy & Steph xx
Hi Eve
Just thought I'd do a little update whilst I lounge in the sun by the pool 😛
I'm in cycle 15 of RCD now although it hasn't banished the MM it has controlled it for now. Thalidomide didn't work for me, well nothing worked for me, but Revlamid has dampened it down so there's no reason that it shouldn't have the same effect for Slim. Though as usual with this awful disease everyone's response is different.
Every day is a gift
Andy xx
I had the pleasure of meeting Keith regularly, either at the day case unit or the local support group, and he was everything and more the person who posted here. He was bloody minded in his approach to MM he wanted to and did tackle it head on. He wasn't afraid to try new treatments or drugs but he knew the ultimately the damned MM would prevail. Although Steph and I only knew Keith and Sue for a little over 18 months I'd like to think we became friends rather then just fellow travellers on the MM journey and I'm sure everyone on this forum who read Keith's posts, received his advice or just had a general chat would share that sentiment.
I'll miss him, Steph will miss him, this forum will miss him but most of all Sue will miss him. Sue is a lovely lady she always has a ready smile even when things weren't going well. Lovely to talk to very down to earth. Sue, and I hope she doesn't mind me mentioning this, has her own problems and only manages to get about with a pair of walking sticks. My heart goes out to Sue at this moment of grief and it reminds me that ultimately all carers will have to go through this grief and my heart goes out to them too. I do hope Sue gets the support she deserves and is able in the future to move on and get back her ready smile.
I did want to post earlier but couldn't find the words to convey my feeling about Keith's passing, not sure I've managed it now, but with the mixture of Dex and a bit of alcohol I've given my best shot.
I will be attending Keith's funeral if everything goes ok and I would like to go not only to pay my and Steph's respects but to represent the admiration, respect and love that this board had for Keith. I hope I have all your agreement that I can represent you all. I know it will be ok but I don't want to be presumptuous.
Keith – you met it head on and showed us how to tackle MM and as Dai says "refused to let this damned disease define you" it's all over for you now but your legacy will live on. REST IN PEACE.
Sue – my heart is breaking for you I do hope in this sad sad time you can begin to fill the void the Keith has left and get some comfort from the many people Keith helped and inspired.
Lots of love Andy & Steph.
Every day is a gift
Onwards and upwards
But most of all love and respect.
XXXXXX
Hi Ann.
Welcome to the forum sorry that you've had to join us.
I was diagnosed after 18 months of back pain. It first presented itself whilst training for the London marathon 2010 I was finally diagnosed Oct 2011 – 3 days before our wedding.
We returned from a short honeymoon to our first meeting with our consultant to be told myeloma is not cure able but is very treatable. Unfortunately my myeloma has been very reluctant to play ball and I have been through all the standard treatments with little or no success. I've now been on RCD for over a year and thankfully it is having some success in damping down the myeloma.
I also have extensive spine damage and have lost 3 inches in height I am scheduled to have an operation, kyphoplasty, on my back in June.
Good luck with your journey with this awful disease you will soon learn that everyone's journey is different.
You will find this forum very friendly with lots of very useful advice and many shoulders to cry on if you ever feel the need.
Once again good luck.
Every day is a gift
Andy & Steph xx
Hi Helen.
Oh the joys of MM. As you say it's a roller coaster of a ride this journey of ours. There are reasons to be optimistic – plateau, few plasma cells etc. as for the back pain hopefully that's just a consequence of over use. Neutrophils 1.0 that's the norm for me.
You say you feel great at the moment well to me that's a good indicator that the MM is not back with a vengeance and hopefully the Revlamid will keep you on that plateau for some time to come.
Waiting for test results is always a worry but unfortunately there's not much that can be done about that.
Every day is a gift
Love Andy xx
Hi Ian
I'm on RCD. Revlamid is taken orally for 21 day then 7 days off. I don't get many side effects from the Revlamid but it can make you tired and depress your neutrophils. My main problem is with the cyclophosphamide side effects which are nausea for 2-3 days after taking it. It can also depress your neutrophils mine hover between 0.8 and 1.1 mostly with the occasional foray either side.
You may get Revlamid on it's own and hopefully the side effects will be minimal.
Good luck at Birmingham.
Every day is a gift
Andy
Hi Vicki & Colin.
Sorry to read that Colin was back at the hospital yesterday. I do hope his fatigue is down to him doing too much too soon. I can't believe he went back to work so soon after his SCT. I can't imagine my returning to work at all at this moment. Everyone's needs and journey are different I know but I think one constant is the tiredness.
The trouble with MM is you never forget about it no matter how hard you try. I know Steph is always watching me for signs of trouble. Even a change in mood will trigger questions and a temperature check. Every cough or sneeze every unfinished meal leads to more questions. It's best to be vigilant though hopefully given time you become used to being paranoid.
Take care Vicki and keep your eyes peeled and ensure Colin get plenty of rest even if he thinks he doesn't need it.
Every day is a gift
Andy & Steph xx
