At my clinic appointment on the 1st August, I found out that my kappa light chains had risen quite considerably from 54 to 195mg/litre (up to 19 is normal). So it seems that the increased dose of Velcade that I referred to in my last post Upping the Ante had no effect.
The new, young and pleasant doctor I saw who has replaced the lead myeloma specialist, Dr Gibbs, who sadly (probably not for him!) went back to Australia wasn’t quite sure what to do next although it was clear that I would coming off trial. He asked me to attend clinic the following Wednesday to allow him time to speak with his colleagues about the best way forward. I appreciated the fact that he did not try to hide his inexperience.
I spent a rather wet weekend staying near Penrith in Cumbria with some friends. I was pretty anxious and gloomy about what is effectively a second relapse, my anxiety and fears exacerbated by steroid withdrawal. However the gentle beauty of the Eden Valley, the moody majestic peaks of the Lakes, even in the pouring rain, combined with the company of good friends helped take my mind off my situation.
On Wednesday I saw the same Doctor again. He suggested that I had one cycle of PAD which is a more intensive treatment regime and lasts 21 days, the aim of which would be to knock the light chains down to closer to normal range. After completion of the cycle I will have a bone marrow biopsy to assess the percentage of abnormal plasma cells in my bone marrow and if less than 10%, I will be having my second autologous stem cell transplant probably around mid to late September. The party is over!
I have had the PAD regime before, two cycles in fact during my induction treatment prior to my first transplant. It includes Velcade, a very high pulse of Dexamethasone each week and a standard chemotherapy agent called Doxurubicin. There is the possibility that my disease has already become resistant to Velcade but it is at a much higher dose on the PAD regime and works synergistically with Doxurubicin so fingers crossed, it is a tough regime but bearable if only for one cycle.
I am now on Day 15 of the cycle and have finished the treatments in the day unit but what is left this last week is the worst for me, the dreaded steroids. I’ve already described in my post Dexamathasone just how awful I find them. I have been on a very low dose over the last 6 months (just 16mg a week) and found the effects minimal . The first week of this new regime I was on 160mg!! Not so bad the days on, apart from sleepless nights, but the crash from Friday to Sunday is unbearable.
It’s not going to be a pleasant or easy next few months but at least it is a plan, the absence of which I have struggled with over the last 6 months or so. I knew that Velcade wouldn’t last forever and that I would be having a second stem cell transplant, it was just a question of when. I would have liked more control over the timing and to have avoided the need for further chemotherapy but it is virtually impossible to have any control over the course of this disease. I suppose I could have chosen to have had the transplant when I had reached complete remission after 5 cycles at the end of November but I decided with my consultant to continue on the trial on a lower dose and extend the cycle to a five weekly one. I guess this was a bit of an experiment for him as velcade as maintenance therapy is quite new and untested. My quality of life was pretty good and as I have learnt there is no rush to proceed to the next treatment/procedure as none of them are curative. If something is working with minimal side effects then why stop it? The downside is living with a very stressful level of uncertainty, having to waiting for results at end of each cycle to determine if I should start another cycle but I was learning to live with it.
I started this new regime exactly 12 months to the day after starting treatment following relapse when my light chains were 6000mg/litre and I was becoming quite ill with myeloma again. I’m in a different place now, both mentally and physically. It will also be just over three years since my first transplant on 1 September 2011. There seem to be numerous coincidences date wise in my journey with myeloma, I think they exist for all of us but perhaps they are more firmly implanted in my memory. There are significant ones that I will probably never forget such as the date of diagnosis, date of transplant, date of starting a new treatment, date of relapse as well as anniversaries of the same. And of course I have had to become fanatical about writing down on my calendar, dates and appointments for clinic and treatment, having attended hospital over 100 times this past 12 months for treatment!
I thought when I started treatment a year ago that my life would be curtailed by the effects of the treatment but after a tough first few cycles I have enjoyed pretty good quality of life. I’ve been able to carry on working, play tennis, take part in a triathlon, go on hikes and of course holidays of which there have been many! In essence I’ve had the outward veneer of a “normal” life but beneath the surface is my cancer world, with its endless hospital appointments, tests, fatigue, stress and infections. I find it hard to integrate the two worlds, part of me doesn’t want to (and hasn’t really had to) but as I move closer towards a second transplant I don’t think I will have much choice.
I went for a lovely walk yesterday below Kinder in the Peak District, the heather on the moors was abundant and beautiful with a fragrant aroma of honey, the leaves have started to fall and the sun was mellow and low. The school holidays are coming to an end and autumn is almost here. Approaching my transplant and the next stage of my journey feels like going back to school after the summer holidays. New uniform, new classes, teachers, a little more grown up, apprehension mingled with curiosity about what lies ahead.
17 responses to “The Party’s Over”
Beautifully written, Wendy. And that photo of the moors is gorgeous. x
Thanks Jet, what about the photo of me with the red nose, moon face and silly cut out reindeer antlers, is that not gorgeous too??
Absolutely! But I didn’t think it needed stating, so obvious it was. x
We’ve not met for a while Wendy but I’ve read all your posts with interest, admiring your courage. Still admiring it in view of your latest post. Chin up Hun. Amazing progress so far, and as you say, fab holidays. Many hugs Hun. Xxx
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Hi Lulu, good to hear from you, hope you are doing well. With regard to keeping my chin up, I don’t do that except for cosmetic reasons LOL (read my post keep your chin up
I am so sorry to learn of your recent labs. Please ask your oncologist about switching to Revlimid. When the pt becomes resistant to Velcade, Revlimid (a descendent of thalidomide) can be a good option. I realize, of course, all patients are different and have many variables. Revlimid is a good option and is widely used in the U.S. My 70 year old husband has MM; he is on Revlimid — 10 milligrams — and is responding well. (It’s sometimes used in conjunction with Velcade and/or Dex). At this time, he is using it alone. Start out with 10 milligrams. If it doesn’t bring KLC down, increase the dosage to 15. If that doesn’t work, maybe go up to 25. My thoughts and prayers are with you. You write beautifully. There’s still an arsenal of “weapons” out there. We have to find the right one. With much affection for you and this difficult journey.#
Thank you Pam for your comments and advice. My medical team want to keep Revlimid in the bag for later so hoping the PAD regime followed by a second transplant works. Hope your husband continues to do well.
Incredibly beautiful descriptions at the beginning and end of the post. Thanks for keeping us informed Wendy, you are one courageous warrior. R x
Thank you Rhiannon for your lovely comment
Wendy, I’ve followed your posts for some time, lurking in the background. I felt compelled to leave a comment simply because your writing style is so fabulous. I just wish, for you, it applied to something less shitty. I wish you lots of luck and send positive thoughts. Btw, I saw Simon Gibbs when he was at the Amyloidosis Centre in the Royal Free before moving up your way. I can certainly understand your sadness in him moving back to Australia! Tracey x
Thank you Tracey for your comments and compliment on my writing. I hope to start writing about things less “shitty” at some point soon although sometimes it is the shitty stuff that inspires the writing!
Again, thanks for all the details of what has become an involved treatment regimen. I am aghast at the steroid dose! I hope things unravel in a positive way and that you qualify for another transplant.
I agree with others above who praise your writing. Well done Wendy.
Thanks John, I hope you’re doing ok on your current treatment and as you know I love your writing!
Thanks for blogging your experiences. It is hard to imagine what my journey will be, but at least I can get an understanding of yours and can assimilate and appreciate what you are going through.
Wendy – all those years soliciting when you could’ve been writing! Going to phone you now x
Oh Wendy I don`t know what to say. Those of us with so called `normal` lives can`t even begin to imagine what you & fellow sufferers go through. You still manage to live your life, go to amazing places & write what must be the toughest blogs. You`re brave & strong & absolutely amazing the way you carry on through it all but I do know that when things are very tough & you`re at your lowest, the days are very very long. Please know that I am always thinking of you everyday & praying that modern science will bring a new drug to help you without all those horrible side effects.
On a lighter note – I didn`t know you`d been out `soliciting`!!! You kept that quiet! I think your friend mean`t all those years as a solicitor. I made that mistake in a school essay (obvs years ago!) & my teacher pointed out that perhaps I didn`t want to go out `soliciting` for a living.
I wish you well always.
Lots of love Pat xxx
Hi Pat, this is quite an old post so it’s a little out of date with regard to my current situation, my most recent post was “and finally some good news”