Hi Eve
Sorry to hear you've had such rubbish treatment. You moan away, especially if it helps! 😀
My biggest moan was waiting for the flippin' drugs from the hospital pharmacy. First I was told 45 mins to 1 hour wait, which is fairly standard, on hard uncomfortable benches, with back pain, fatigue and already tired from blood test and meeting consultant.
Went back an hour later to be told it would be a further half an hour. This continued two more times before I blew my top and stormed out. Went off to have a pub lunch and came back later, giving a manager a bit of a mouthful, not so much about the wait, but about the poor communication. I intended to write a stinking letter, but decided I had better things to do with my time.
I ended up spending the whole blasted day caught up with hospital stuff… not what you want/need when you feel rubbish and you've only got 10-15 years left to live!
But, I did speak to the specialist nurse about it and it was much better this last visit, when we could collect it the next day and it was ready when I arrived.
Hope your experience improves too.
Jet
Ignore – mistake
Good luck with the Revlimid, Mike. I've found it's not a particularly nice drug in terms of side effects, but it is the NEW thing and the reaction I got from my nurse when I was randomised for Revlimid was very positive. And it seems to be working well for me!
It seems that they're basically trialing it at the first stage of treatment to prove it works better than Thalidomide, whereas it is/was being used successfully at a later stage.
Hi Kay
Your post made me laugh out loud. Thanks! It reminded me of my first days on the drugs.
When I was first diagnosed, they immediately put me on Dex before any of the other drugs… I guess because I hadn't yet been told about or agreed to the trial.
Like you, I was totally hyper. Unlike you, I was in hospital without proper internet access and no real history of internet shopping, so I guess I was safe from an urge for wild spending. I did have that same sense of crazed creative ideas… My goodness, what I wasn't going to do… I would get a dog, possibly a puppy or even two… because I didn't have to work any more. I would extend my house and make a ceramic studio in my garden, where I would make ceramic art (something I've wanted to do for some time), I would never have to work again, I had all sorts of (now forgotten) creative ideas of what I would make… It was actually a very exciting few days.
I'm so glad you love everything you bought. Makes me wish I'd gone ahead and booked the architect and builders. LOL!
Hi Dai
I will be there on Sat, with a friend. I am very fortunate in that I live a brief 5 mins away from the Village hotel, so if it does get too much in terms of information overload, or fatigue, I can just nip home. I doubt I will though.
I'm being treated at Nottingham City Hospital, so know the two doctors and both nurses (just not met the Prof yet) who are presenting – makes it feel more like going to see friends… well, kinda! 😀
Look forward to meeting you and Janet and hope you're feeling strong and healthy-ish on the day.
Jet
I'm amazed how low everyone else's PP figures are compared to mine. All well under 100 and seriously 1.8 must count as negligible!
To be honest, I'm more interested in how I feel on a day to day basis, e.g. with pain, energy and appetite. I just go with the flow when it comes to the medical/clinical aspects, trusting my doctors to lead the way and give me the information I need to make decisions.
However, as you've asked and as I now have some figures, I'll happily share if it's helpful:
4/02/11 (first diagnosed) Paraprotein level: 4309
7/03/11 (4 weeks into treatment): 129.6
That's a 97% reduction. There needs to be at least a 90% reduction to consider SCT, so this seems good to me. They are waiting for a sign of plateauing at a low level before putting me in for the procedure.
My most recent blood test was taken 04/04/11 – results won't be back for a couple of weeks yet.
Jet
Hi Eve
Yes, it does seem to be such an individual disease. and dosage decided based on blood and kidney results. I don't think my Dex or chemo drugs are different to "the norm". But for Revlimid, I have been told that my dose is lower due to my current (poor but improving!!!!!) kidney function.
I currently take 15mg Revlimid every other day, but once my kidney function improves, this will go to a daily dose of 10mg, which may then increase to 15 or 20mg daily. Of course, I may not get to a higher dose if my paraprotein counts reach the low plateau they're hoping for in the next few months, when they will put me forward for a stem cell transplant.
Please could anyone responding to the original questions about Dex, reply to the original post, as we seem to have gone a little off on a tangent here.
Thanks!
Jet
So sorry you have such a bad experience, Bridget.
I also have taste problems, which is possibly the most distressing of all side effects and the worst effect on my "quality of life", but I put it down to the Revlimid, not the Dex. Hmmm…
Hi Mark
I am 49 and was diagnosed on 4 Feb this year. I don't have any tumours, but do have kidney failure. I think they probably caught it quite early. I'd had back pains, loss of appetite and fatigue for about 6 months, but no idea it was anything too serious. As everyone else has said, MM is known for being a very individual condition, so one person's experience is just that. Don't put too much weight on to other's experiences. Do ask lots of questions of your father's consultant/specialist nurse. They're there to support you as well as your dad.
However, to add to the positive thinking, I was told I could expect about 10-15 years. And, a friend's mother who is 71 had a stem cell transplant for MM about 8 years ago and is still in remission. So, for me, although it is life-shortening, it feels like a substantial length of time to "play with" and I feel very positive and keen to make the most of life.
Good luck to you and your father!
Jet
Hi Gaye
I've never written to any of my doctors, apart from a note to my GP asking her to complete a form for me, but I always call my GP and consultants by their first names. It makes me feel like we're in this together, like they're my friends who just happen to have a medical degree. Like Jo says, it just confirms they're human… and maybe even encourages them to be so.
Keep it up, I say! x
Hi Sandra
When I was first being told about the disease and treatment, including stem cell transplant, my girlfriend asked about donor transplant… like you, more out of curiosity than anything.
We were told that the risk of rejection of a donor transplant means that they rarely take that route, especially as they generally get a good outcome from autologous transplants. We were also told that a sibling is likely to be a 1 in 4 match and the testing is a very straightforward blood test.
I am 49, so quite a young patient for MM. I will have SCT this summer, all being well and providing I remain healthy, if I relapse in a few years, then I could potentially have a further self-SCT and possibly only then… maybe 10 or more years away, they might consider a donor transplant.
It does seem to be a rare thing to do… which I trust is for good medical reasons. I trust my medical team, and the self-transplants seem mostly successful, so I'm not giving it any weight at all at this point.
I'm being treated at Nottingham City Hospital Centre for Clinical Haematology, under Dr Cathy Williams/Dr Jenny Byrne. So far, I'm well-impressed and feel they are very clear, competent, supportive and human.
Hi Amanda
In response to your concerns, I would say, like everyone above, that this condition is so individual, no one will have the same experience as your mum, but I thought I'd add my own experience as a counter to your mum's. I'll leave it to you to decide which you prefer. But I do understand your sense of impotence. Like others, I would also say enjoy it while you can. The treatment has a lot of side-effects which are not necessarily pleasant.
I was diagnosed in Feb this year. I was in hospital due to dangerously high calcium levels causing a high level of kidney failure, so was already having treatment. I had a CT scan on Weds, then a bone marrow biopsy on the Fri. Two hours later they came to give me the diagnosis of MM and within a couple of hours, I was given 40mg of Dexamethasone, very powerful steroids. I was warned that "they might make me a little hyper"… OMG! I was bouncing off the walls… AND trying to deal with the diagnosis! The steroids made me insomniac, so I was bouncing around a sleepy hospital ward in the early hours with no one to speak to and all this crazy stuff going on in my head. The next day I had two visitors who couldn't get a word in edgewise as I couldn't stop talking. It was all very weird, but maybe protected me from sinking into immediate depression…? Who knows?
By the way, while MM is considered "incurable" but treatable, you could say the same about LIFE! A friend of mine's mother is in her eighth year of remission following a stem cell transplant, which gives me, and I hope you and your sister and mother, great hope.
Jet
That's a bit rubbish, Gaye!
Funny, isn't it, that doctors concern themselves about patient compliance… taking tablets at the right times, right days, right amounts… understandable with the strange variations of when and how much we each take of all the different sweeties… Too bad the pharmacy compliance isn't better, eh?
On a similar note, I had a teeny weeny mini panic earlier today, thinking I'd missed taking my second dose of chemotherapy, but I was looking at the wrong date on my sheet and it was actually today that I needed to take them. Job done! LOL!
I suspect if I had missed the day, it wouldn't have been such a big deal. And I dare say, it won't make a huge difference to you, starting a day later than expected. I do wonder how they come up with the spacing of when to take the different pills.
I have a 4-week cycle, taking Revlimid every other day for 3 weeks, although this may increase to daily once my kidney function improves. I take Dexamethasone on days 1-4 and 12-15 and chemotherapy on Day 1 and Day 8. I then get a week off the heavy drugs. Phew!!!!
When I started treatment, I was given what feels like very informed advice from my specialist nurse…
Dex early and Revlimid late.
Dex makes me hyper and insomniac, even taking it early morning, but it's an interesting time… I get to think, read or catch up on emails and blog posting. Not having a job, kids or any other responsibilities, I don't mind. It's just part of the whole experience.
Revlimid makes me very tired, often needing a mid-afternoon/early evening nap and usually retiring to bed around 9pm. I sleep like a minor death – totally out… deep, deep sleep without dreams.
It's funny that we keep swapping our tales and keep reminding ourselves how individual this condition is… not to mention the huge variations of medication.
Hi Nigel
Just a quick response to your post… not that any of us can ever really answer each other's questions…
I was diagnosed on 4 Feb this year and am in treatment – on the Myeloma XI clinical trial, taking Revlimid, Chemo and Dexamethasone and en route to a probable stem cell transplant later this year.
A couple of weeks ago, a friend visited who told me that her partner's mother has MM. She is 71 and received a stem cell transplant, from which she is in remission eight years later. Clearly, I found this very encouraging and I just wanted to share that with you.
Like you, I have a lot of faith in my Haematology team and so far intend to continue with their advice/direction.
Good luck with your decision and your continuing quality of life.
Jet
