Velcade gave me complete remission!
I’m half way through my seventh cycle of Velcade and Dexamathasone and the time from the start of treatment in August seems to have whizzed by. In some ways I am surprised by how normal life has been. I have had an excellent response to treatment, my kappa light chains are now in normal range and I am in complete remission. The plan is to strengthen that response with another couple of cycles followed by a stem cell transplant (from my own stem cells) and then possibly a donor stem cell transplant a few months later. I try not to think too far ahead to these procedures, as the latter especially is not without considerable risks.
I am fortunate that apart from the awful dex, (see my post, Dexamethasone, the good the bad and the ugly) the side effects of the treatment have been fairly minimal and I’ve tolerated it well without all the numerous infections and issues I had on my initial chemotherapy. Managing to work, rest and play including trips to Palma, Cornwall, London to see the ATP world tour mens tennis finals. I also went to Barcelona and Girona a couple of weeks ago where I took these photos of the sparkly Christmas decorations and the stunning Sagrada Familia by Gaudi. I was disappointed to see that it still hasn’t been finished though! I’ve also started playing tennis again after recovering from a painful and debilitating nerve compression problem in my neck (which I am pleased to say turned out to be nothing to do with myeloma). Oh and I’ve also started running again mostly on dex days! In fact the outward appearance of my life is so “normal” that I think people forget I am on chemotherapy!
For the past few years this time of year has been associated with bad things happening in my life. It was just before Christmas in December 2010 that I was diagnosed with myeloma, I described how that was in my post The Nightmare before Christmas. And this time last year I found out that my light chains had risen out of normal range which turned out to be the start of an upward trend signifying relapse and a turbulent and stressful 2013 at times. I’m hoping this Christmas on my 7th cycle will be completely uneventful, with the only thing hanging over me caused by over indulgence!
It is three years today since I was diagnosed with myeloma so today is a milestone of sorts. According to the most recent UK stats for survival from Cancer Research UK (http://www.cancerresearch.uk.org/cancer-info/cancerstats/types/myeloma/survival/multiple-myeloma-survival-statistics)
I am one of the 72.3% of women with myeloma that have survived more than a year. Will I be one of the 37.1% who survive 5 years (the five-year relative survival rates for myeloma are among the lowest of the 21 most common cancers in England) or the 14.9% that survive 10 years? Who knows? I hope so and I know there have been further improvements in overall survival rates since this study due to the newer and better treatments but realistically there is a very strong possibility that I won’t make my 60th birthday or even my 55th. Of course I feel sad about that but on the upside, at least I won’t have the stress of planning how to celebrate it! However there will be the pressure of trying to make the most of the birthdays I am around for as as well as the dilemma of how to live a significantly shortened life.
The milestones like birthdays, number of years post diagnosis, stem cell transplant anniversaries etc are great but counting the milestones as simply the passage of time is meaningless. It is about how we spend the time between each milestone that matters. I can’t very well live every day as if it is my last but want to make sure that I spend as much of my precious time as possible doing things I enjoy, being with people I love and care about and having fun. So no pressure then! The counter balance to this is accepting the times when I am feeling down, fatigued, ill, horrible, anti social etc etc are not a waste of my precious time and that I don’t have to do anything for the sake of “making the most of whatever life I have left”.
I love the lyrics to this song by Leonard Cohen, (A Thousand Kisses Deep). I don’t know what they mean to him but to me they sum up my experience of living with myeloma, the periods of remission, relapse and dealing with a reduced like expectancy.
The ponies run, the girls are young,
The odds are there to beat.
You win a while, and then it’s done –
Your little winning streak.
And summoned now to deal
With your invincible defeat,
You live your life as if it’s real,
A Thousand Kisses Deep.
I’m turning tricks, I’m getting fixed,
I’m back on Boogie Street.
You lose your grip, and then you slip
Into the Masterpiece.
And maybe I had miles to drive,
And promises to keep:
You ditch it all to stay alive,
A Thousand Kisses Deep.
11 responses to “And on the sixth cycle …..”
I’m so pleased you to hear you are in remission again! You ve had a lot of sickness this year but also done so much… I realise again when I read your posts how much your account of living with a life shortening illness informs the nature of a well-lived life for everyone. I think it’s brilliant how you stare down the statistics and questions of illness, and wellness and allow your readers , well me, at any rate to question meaning and values. Congratulations on your 3 year survival!
Have a happy holiday, keep the posts coming.
Lots of love
Hi Prue, thanks for your reply, I really appreciate your comments and am glad that my posts provide a useful perspective to a ‘normal’ person such as yourself, well perhaps normal is not quite the right word but someone who hopefully isn’t living with a life shortening illness!
Sending you love down under!
Another great post, Wendy, complex feelings brilliantly expressed. So glad you’re in remission again – I’d better start practising my tennis – and congratulations on 3 years (so far) surviving this b**t**d illness. Have a good Xmas and look forward to seeing you when you’re back. xx
Thanks Poddy, look forward to playing tennis with you in 2014 xx
MerryChristmas Wendy. Once again you expressed the dilemma of living positively while being very realistic. You continue to inspire me and keep me grounded in the present. Having had a autologous stem cell transplant I can honestly say it was both worth it but not a walk in the park.I am 3 year post transplant and just now beginning to see my light chains slowly rise. I recently added some more supplements recommendedby a Naturopathic Oncologist, to my regime,…..just to see if they keep my light chains from escalating………a little experiment so to speak. My onc and G P fully support me.
Best of luck and congratulations on your 3yrs survival Wendy!
Thanks, I hope the supplement experiment works, there is no harm in trying, all the best for 2014
I hope you don’t mind me re-quoting the survival stats you found. As you know, we share the same questions, doubts, fears, hopes, about survival. Thanks for the link to the research website. Makes you take stock, eh? And the Leonard Cohen song is perfect! Jet x
No problem, yes isn’t the Leonard Cohen poem perfect, wonder what it means to the maestro!
Hi Wendy I was at mums over christmas so wasn`t able to read your blog until now. I`m so glad that you`ve been feeling (mostly) well during this course of treatment and that you are in complete remission. You certainly do live life to the full (a credit to your amazing strength of character) and long may it continue. I do hope that 2014 will be a very good year for you with only good news. If I could be granted one wish – it would be so.
Don`t overdo it with the running & tennis, save some energy for tonights celebrations! We will be back in Clacton again with mum & will raise a glass to you.
Lots of love
Thanks Pat and happy new year!
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