Dear Nicola,
You must feel desperately cheated that your Dad has not had the chance to fight his way through the available treatments… and your Dad will be feeling the same. I am sure that there are many of us here who know that there were times of touch and go for us… but we got the chance to move on.
Even at this seemingly late stage I will hope and pray that something turns in his favour.
Much love to you and all of yours.. especially your Dad.
Dai.
The very best of luck Andy… it sounds like a determined blast from the medics to get those pp's down a bit more… enough to set a plateau for your SCT (20 ish?).8-)
Although your pp's are resisting the treatments they are not moving either… so it sounds like a stand off. I am sure this rather drastic set too will do the job… and you are in the right place under close scrutiny so side-effects etcetera should be spotted and alleviated as they go along.:-)
I have had nearly everything on your list… but not all at the same time.:-D 😉 😛
Regards
Dai.
Hi Amelie,
They don't collect stem cells for a specific number of transplants… 2 is usually the maximum and that is determined by how may cells get harvested.
They usually hope for approx. 5 million = 2.5 per transplant. I, for instance struggled over 5 days on the harvesting machines, including two late night dashes back into the hospital for very expensive pleraxifor injections to help the cells off the walls of the bone… we managed 2.i million in total.. the professor said he would have gone ahead with 1.8 m at a push. I know some people have harvested 10 million cells over a couple of days and I believe that they will put as many as they can back during the 2nd STC.:-)
Thalidomide is something of a wonder drug… frontline or maintenance… despite the bad press during the late 60's early 70's when it was given to pregnant women and caused many problems with defective births. It will be used to maintain John's pp's.. hopefully getting them to zero or at least a steady and acceptable plateau before starting his 2nd SCT. I had it as part of my frontline treatment CDT and it worked well for me then.8-)
Let's hope thalidomide works quickly and John gets his transplant date fixed real soon.:-)
Regards
dai.
Many commiserations on that score Tina.. that's how I started… but they failed to diagnose MM at the time and blasted the tumour with several high doses of radiotherapy over a six day period (A double dose on the Saturday, Sunday to rest and then single high doses Monday to Friday inclusive).
It did the job.. but fried nearly every stem cell in my body in the process.:-0
I hope that your pain relief regimen stands you in good stead until April 11th… hang on in there and let loose on here if it starts to get bad.:-D
Dai.
Hi Amelie,
I am glad that John is going to receive his 2nd SCT. They will use Velcade because it has a good chance of getting him to the right level but its effects last far less than Revlimid, which is a long term therapy (rather than a short term knock back). Revlimid will more than likely be John's next treatment… but the good news is that by that time Carfilzomib could well be licensed in Europe and that knocks back while allowing Rev & Dex to maintain…. so good news for anyone who can hang on in there for a couple of years or so.
It is highly unlikely that John will receive a 3rd SCT… but who knows… there are quite a few of us here who only harvested enough for 1 SCT and the medics don't seem to be considering donor cells as an option for people over a certain age (ie late 50's +).
I wish John well… let him get through his Velcade (which is now done subcutaneously – much easier with far less side-effects) – and then his SCT… and leave what come next until much later. 🙂
Dai.
Hi Keith,
I trained on the early Macs (very basic computing skills) circa 1990/92 and fell in ove with them but settled for a PC at home.
My big dilemma came in 1998…. when I finally went for a custom built Gateway PC… which was a wonderfully easy to use machine, over a Mac. I finally switched to Macs (desktop and laptop in 2006 and I have never looked back.
So easy to use without hardly any of the crash/burn/hack/worm problems of the PC. I love my Macs. Yes, they are more expensive but my, oh my, are they worth every single penny. IMHO.:-) 😎
Dai.
Hi Helen,
That's alright then.;-)
On my second week, with my second Dexday yesterday… so feeling tired but not much sleep.:-/
My shoulder is improving slowly, so I am hoping that that is the Rev doing its work 😎 . I have also felt a little sore in the areas of my ribs where pain was recurring, so once again I hope that that is the medicine doing its job.
I go back in to the Daycase Unit for a bloods check-up (white cells and Neutros next Monday)… so its 'finger's crossed' that they haven't dropped too much.
Much love
Dai.
Hi Mavis,
I just checked in and looked up and down this thread a few times because I know I answered earlier… ???
Still, it's either in the ether or otherwise I binned instead of sending… its 'Dexday' TM, so nothing would surprise me.;-)
CDT was not exactly pleasant… putting chemo-chemicals into your body and asking them to seek and destroy has to have some side-effects… but nothing half as bad as I imagined.
I had a mild nausea problem at the beginning but that was soon sorted by even more tablets… I felt fatigued all of the time and hyper half of the time (yes, with 'DEX' TM this seeming anomaly can easily be achieved) 🙂
I had 4 cycles in total but was almost in remission after 3. (1 Cycle = 3 weeks active + 1 week rest) I thought that CDT was a miracle treatment… bringing me down to 0 (zero, zilch, nought, nawt, nothing) from 3,500 kappa light-chains (yes, I was in a really serious, grown up mess when I was finally diagnosed).8-)
I hope it does the same for you and that it holds MM at bay and you in a happy state of remission for a long, long time to come.:-D
Much love
Dai.
Hi Nicola,
Velcade worked brilliantly for me… I had six infusions but nearly all the good work was done in the first 2 or 3 cycles… including bringing my kappa light chains (Bence Jones Myeloma) to 0 and deleting a secondary tumour on my sternum on the way.
The downside was that as soon as they took me off the treatment my myeloma started rising again… slowly but ever so surely… and now I am on Revlimid. I went into official remission at the beginning of October… my light chains started showing by mid-November and I was declared relapsed on January 9th. I had a delay in starting Rev & Dex due to the (failed) chance of getting on a trial… so I eventually started this treatment last Monday (27th February), giving me a total remission of almost 5 months.
But I paid the price for delaying the start of treatment with new disease in my left shoulder and some moans and groans for some old familiar places.:-/
I imagine your Dad will be on the same treatment as me… if so we can compare notes. Rev & Dex show good results… if you take to it. At the beginning your white cells and your neutrofils are monitored over the first couple of months as the treatment can knock them for six. You are given anti-biotics in that time, as a preventative measure and if there are any issues the Revlimid can be reduced… but head up and thumbs up for a clear passage into the Rev & Dex relationship (my consultant says that most people find a manageable level after 3 cycles (3 months… with 3 weeks of nightly Rev followed by a week's rest per cycle – the Dexamethasone taken once a week (20 a time to start with) once a week for ever and ever (hopefully).:-)
I was brave and asked my consultant if Rev & Dex had a median, an average… and to my surprise she said yes. Apparently the median is getting better as they accrue new data (Revlimid being relatively new) but the current median is 30 months… which sounds pretty good to me and I'd take that offer if it was guaranteed.:-)
Of course medians include shorter and longer periods (I met a woman at the April 2011 Nottingham InfoDAY who had been on Rev & Dex for nearly 6 years… and she had not had a good journey up until then) but 30 months seems very good to me personally. I am very hopeful for trials drugs like Carfilzomib and it is my aim to get settled on Rev & Dex and hold on in there until Carfilzomib gets licensed and ready for my use… as well as all the other magical and mysterious other drugs and therapies out there in the twilight.8-)
As our irrepressible Tom says, 'Onwards & Upwards'… keep your Dad positive, ask him to visualise the drug working and get him to see himself sitting in a sunny park watching the world go by… feeling relatively fit and healthy.. its August 2014 and the Rev & Dex is still doing its job… visualise that every time he pops his pills… visualise, believe, savour and carry on.:-D
With best regards 🙂
Dai.
Hi Chris,
I'm glad to see that your pp's are dropping steadily… the more i see and hear about mm the more convinced I am in the 'sure but steady' aspect of treatment and response. In America the medics seem to follow the 'little but often' approach and they are getting much, much better results than us… + they are also not slaves to the magic and mystery surrounding stem cell transplants.. usually treating the patient according to what might work best for them… and not act as slaves to the equivalent of NICE (our funding bodies which also dictate our treatments).
I must admit that the drugs in the pipeline, coupled with the 'less is more' approach, fill me with the hope that MM will soon be downgraded to 'Chronic' from 'Terminal'… perhaps a little too late for the likes of me but you are young and fit and full of vim and vigour… so 10 years + should be a reasonable target the way things are going.
I do hope so and I wish you all the best for the wedding and all your joys to come.:-)
DAI.
Hi Mavis,
My consultant hasn't ordered any new scans etc., saying that while it might be a coincidence, where myeloma is a factor she doesn't believe in coincidences. Remembering that this is not in isolation… I do have other, older areas that have flared up at this time, specifically in my ribs.
I go back next Monday (week tomorrow) for my first bloods reviews (Rev can play havoc with white cells and neutrofils so they keep an eye on them over the first couple of months) if my shoulder is any worse, or even still the same, I will ask my specialist nurse (doing the review) for further investigation. My consultant did say that if it is new disease then the Rev should see to it… so I have got to give it a chance.;-)
Dai.
Hi Tom,
I was due to start Rev & Dex on January 9th but I was (easily) persuaded to hold off on the chance of getting on an active trial for Carfilzomib (of which I have heard nothing but praise). To qualify I had to have 0.5% myeloma present in my urine.. which I didn't manage to achieve over 3 x 24hour urine collection tests conducted over the following 7 weeks… and now they have closed all entrance to the trial.
On January 9th my kappa light chains (Bence Jones MM) were only at 120… so very low and no active disease showing but over the following 7 weeks I started getting rib aches and other 'flags' that my disease was getting active. My shoulder started hurting a couple of weeks ago and I reported it.. but we were so close that we decided to hold off. Off course, just my luck, the trial closed and I have active disease.. which means the Rev & Dex have to start work straight away, damping down current problems, instead of just keeping them quiet like they are meant to. Revlimid is a therapy, not a chemotherapy, so it might well do the job but it means having to get my mm straight first… whereas if I had started Rev & Dex in January there is an excellent chance that the new disease would never have formed.
We took the chance… we failed and now I have got to pay the price for a while. Hopefully it will settle down soon and we can form a relationship that lasts long enough for Carfilzomib to become an alternative. Only a couple of years or so.:-S
Ho Hum.;-)
Dai.
I'm having a rough few days at the beginning of my Revlimid & Dexamethasone regime… not helped by a 'frozen shoulder' which in truth is a new area of mm. So, while I am feeling a bit sorry for myself I know that a couple of decent nights sleep, a bit of pain management and upkeep of my liquids will soon have me feeling much better.
The liquids (and controlling the No.2's through poo juices) are essentials for MM'ers… they are the first indicators that something is wrong and should never, ever, be dismissed lightly, or even as a nuisance.
I don't feel like drinking at the moment, it is a bit of a chore but if I don't I will end up in hospital because I have learned that dehydration is inevitably followed by infection.
Drink up, keep a bottle of water at hand, topped up often and ask a loved one/carer to remind you.. and soon you will be balanced and balanced means better.
Trust me on this.:-)
Dai.
Hi lovely Bridget,
Like Tom I would love to be near you right now to give you a hug because of the news being so bleak… but we, and especially you, can still be hopeful of some success with a previous treatment… CDT or something similar. or perhaps they might offer you a trial.. pomolamide (sp) or something of that ilk.
I assume that the 4 week break to your next clinic is for your doctors to consider their/your options. Lets hope they come up with something that might slow things down for a while until something more suitable or longer term comes along… we all look for that. 🙂
You have been a rock to and for so many of us on this board… its time for you to lean on us for a while… especially the next few weeks.
Much love xxx
Dai & Janet.
Hi Gemma,
I would like to extend a very warm welcome (usually our welcomes are guarded with a 'sorry you have to be here' message. But although your experiences are full and empathetic in nature I still understand that were ultimately achieved through the care and eventual loss of your Dad… but here you are and, as said, you are more than welcome.:-)
I have recently (as of last Monday) started on Rev & Dex having missed out on a trial for Carfilzomib by a matter of a week or so) … I only raised enough Stem Cells for one STC so its been:
CDT – STC – Velcade and now Rev & Dex for me… the SCT failed after 10 months and the Velcade after 6 weeks (but due to the trial qualifiers etcetera the actual remission lasted 5 months in total. So for me the therapies have failed but the good news is that I have responded to all my treatments extremely quickly and extremely well… so Rev & Dex being therapies (rather than chemotherapies) I hope to respond and cope with the treatment to at least its median… we will see.:-D
There are some wonderful people here… a fine mix of patients and carers that, together with others like yourself, (usually active in our newly created 'End Of Life & Grief' section) we have a warm and close group of MM travellers.
Regards:-)
Dai.
