Hi Ann and Pete,
Wishing you the very best of luck withe whole Harvest Procedure.:-)
I had five days in the chair, with 2 Pleriaxafor injections to help the stem cells out. I achieved 1.2 million which gave me enough for my single SCT. Here's hoping your journey is much easier.;-)
Dai.
Hi Andy,
The slim chance of an auto SCT is quite good given the previous answers. 😉
Cycle 10 is good, you may well go to and past the median for Revlimid which currently stands at 30 months/cycles… I really hope you do. 🙂
Dai.
From my laptop in Room 2, Fletcher ward, City Hospital, Nottingham. 🙁
Hi Terry.
I start Bendamustine next Monday but Scott and Keith have already started treatment and may well be better informed about the treatment.:-)
I have had 2 DVT's in the past couple of years… Left Leg in the Summer of 2011 and the Right Leg in the Summer of 2012. Both swelled up like 'Tree Trunks' and both took several week to come down to something near normaI.:-(
I developed a tumour in the centre of my chest but the medics were sure it was MM related and that the treatment I was about to start (Velcade) would cope with it… which it did.:-)
I'll keep you posted re: the Bendamustine treatment but as stated above, Scott and Keith are ahead of us both and they might chip in as soon as they read this thread.:-)
All the best and I think your car restoration project is wonderful.8-)
Dai.
Hi Peter,
It's good to see you posting here… we met over lunch at the Nottingham INFOday a good couple of years ago… I am an advocate of less is more and I have followed Dr Berenson for about the same amount of time… you may well have put me onto him, or at least the reportage from the US MM conferences.
I also believe that our medics are sometimes too quick to pull us off treatment if little or nothing is showing. I listened to a Doctor at one of the US conferences saying that quite often treatments will start showing their efficacy after several cycles… whereas NICE puts short time-frame limits on results.
My SCT recovery was good and I was feeling excellent when I first started showing signs of relapse after 10 months… with only enough Stem Cells for one transplant. The American medics have shown me enough evidence to believe that dedicated MM medicines, used properly, can give decent remissions, with a far better quality of life than the bludgeon of the SCT procedure.
I don't see enough evidence of UK/European medics fighting for newly licensed medicines from the US, perhaps they do but I don't see or hear of it… in reply to a question on the new drugs my consultant said that they were 'a good way off yet' and that the scraps that we are offered (my words) are better than 'holding your breath' and waiting for UK/European licensing.
I would rather have less and have the medicines increased in dosage if there is no movement, rather than starting heavy, suffering side-effects and then having the medicines reduced… as we do now.
Regards
Dai.
Hi Charlie,
I had my only PE following extensive radiotherapy a month or so after being diagnosed with Secondary Bone Cancer – Primary Unknown (it took another year and a move from Pembrokeshire to Nottingham before I was properly diagnosed – long story).
My frontline treatment was CDT (Cyclophosphamide/Dexamethasone/Thalidomide) – so although I had a PE history, they didn't hesitate to give me Thalidomide. I have had 2 DVT's (Left & Right Legs) since then but no further PE's and I am on permanent Clexane (blood thinner).
It seems that I am about to start on Bendamustine in the near future, with daily Thalidomide and weekly Dex. I will raise the question of Thalidomide/PE but they are usually on the ball at Nottingham and they haven't indicated any possible problems (the only question about compatibility raised was Thalidomide & PN (Peripheral Neuropathy) but even that was covered by the possibility of dosage reduction if the problem occurred).
You say you have had a PE. What treatment (if any) were you on at the time?
Regards
Dai.
Hi jean,
I have been following the thread and one point in particular… the untimely and shocking death of our good friend Paul. 🙁
Paul's death was truly shocking … he was young, fit and seemingly doing very well in his recovery following his SCT. Because of his relative youth and fitness perhaps we thought him invulnerable to infection… but he had MM, the same as the rest of us. 😐
Paul had been out for a 5 mile walk in the morning before he fell ill. His Neutrofils must have been pretty low before the infection took hold and despite his seeming strength and fitness and the amount and strength of the antibiotics given to him… he was unable to fight off the infection and death followed.
I have wondered if he was doing too much. He was doing so well, feeling so good, recovering quickly… let's think about it.
We have our SCT's, we spend several weeks re-learning to eat, walk and move about the house. Then we start to feel better… in so many ways… and we start feeling secure in our state of being… that we are finally disease free… for now and perhaps, hopefully, with a following wind, for many years. Consults and bloods are encouraging and we grow more confident in our bodies and our abilities to lead a 'normal' life… but it has been said so often here… the rate of recovery following a SCT can cause false optimism. Some people return to work… far too early. Others take on journey's or activities that take too much out of them.
A common factor in people with MM is the rate of recovery, not just from the major points of MM like our SCT's but from every day activities… like small jobs around the house or trips to the shops. That is why some of us encourage others to take their time in recovery… and when they feel ready to rejoin the world… take another couple of months to prepare for it. 😉
I feel like such a killjoy when I tell people about to take on their SCT's that it can take up to 12 months to fully recover. That doesn't mean living like a Nun or a Monk… being a recluse from the world and its activities… but that it is well worth the extra time in recovery, taking it easy, building up strength and stamina so that they can fully enjoy the remission that follows… without the hiccoughs of knock-backs and infections associated with overdoing things while still in recovery. 😛
A SCT is a major event… your immune system is deliberately destroyed… then you are given your own Stem Cells back which have to stick to your bone marrow and start growing. Like a computer your system is literally shut down and rebooted… but unlike a computer, which has a hard drive to give instant recovery to files and applications, your system has to start rebuilding its files and applications byte by byte, taking weeks and months to fully recover.
Paul was desperately unlucky… and there seems to be no rhyme or reason why some have remissions that last years and others who nay manage a few months. But to give yourself the best chance it is advisable to take recovery from the SCT very slowly with minimum risk.
I am sure that Frank will take on the SCT with the necessary precautions and the just as necessary positive outlook for a full recovery and the years of life to follow. 😎
Take it easy… but take it. 🙂
Dai.
Thank you Sussanah and Tina,
I am going to phone Sarah, my specialist MM Nurse to ask about a PICC Line because getting a Cannula fitted is a major operation with me. I know you have mentioned this before Tina… I believe I asked about the procedure during my Velcade treatment but they said something about 'not doing them in Nottingham' or suchlike) but I will press a little harder this time. 🙂 😎
Thanks for your support. it is much appreciated.:-D
Dai.
Hi Liz, Tom & Jo,:-)
The fact that they have told me that they have applied for funding for Bendamustine makes me feel sure that it will be granted. After that it's a matter of waiting for dates for the start of treatment. 😐
I am a little bit wary of the daily Thalidomide because, apparently, that was the drug responsible for my Peripheral Neuropathy during my frontline CDT treatment… but my new consultant told me that they will keep an eye on my PN levels and will reduce it if necessary. 🙂
The disappointment in finishing Revlimid is wrapped up in future treatments… Kyprolis (Carfilzomib) is licensed in the USA and will come here within the year (ish) and it works with Revlimid… Kyprolis reducing the Light Chains while Revlimid does its job. Revlimid has a median of 30 months (I got 10 months and everyone else I know has had roughly the same). With Kyrolis that median is extended much further… so there was my hope. I don't know the median of Bendamustine… its such a new drug… but it may give me long enough to see the licensing of Kyprolis (and other new drugs from the USA)… so I will be staying as positive as possible and wait and see where Bendamustine takes me. 😎
I will wait to hear from Scott and Keith and see how they are getting on with it, plus any tips for handling any side-effects. 😎
'Whatever It Takes'…
Dai.
H Sarah,
i've been there and had that sort of 'care' Each at my own 'City' hospital and at the Queen's Medical Centre, it has occurred at the 'initial Assessment Units', where they diagnose your problem before moving you to the 'specialist' ward.
The staff are usually overwhelmed, under-trained and have not got a chance of understanding the specifics of so many conditions and diseases… they are basically a waste of time.
i have found that it is worth dropping in a note to the hospitals PALS desk (patient Liaison).
Perhaps Henry also needs a couple of weeks away from work, resting at home… it's worth considering.
Regards,
Dai.
Thank you all very much indeed. 🙂
Janet joined me in my cough come dribble-sniff and treated herself with proprietary medicines, while i stuck to the AB's and Vick. 😎
The good news is that we are both much better and the dribble-sniffs and cold-coughs both seem to be receding nicely… and best of all the A/B's seem to have the C: Diff under control as well… ether that or my immune system has kicked it not submission – either way not a sign since Wednesday – so finger's crossed. 😎 😀
Beginning to feel better, beginning to feel good. 🙂 😉
Thank goodness! :-0
Dai.
Thank you kindly Tom and Jo. 😀
Coughs and dribbles receding and C: Diff seems in control. 🙂
Glad you liked it Jo… I'll dig out another couple but I don't want to be a nuisance. 😉
Much love to you both.
Dai.
Hi Vicki & Colin.
Great news… roll on Monday! Colin's bloods are remarkable for this juncture: 😎
[b]Haemoglobin up to 12.7 (13 is the lower end of normal)[/b]
[i]Thanks to my dicky Romany inherited blood 12.4 is the highest I have ever been in my life… even when I was playing County Hockey. Again C: Diff has had my HGB hovering between 8.8 & 8.0 – resulting in 2 lots of blood recently [/i]
[b]Platelets, up from 41 to 90 (about half way to normal)[/b]
[i]My platelets were down to 48 at the height of my C: Diff but they are normally in the 120/160 range.[/i]
[b]Total White cell count 3.4 (3.6 is lower end of normal)[/b]
[i]My white cells have been a bit low (2.6) during the C: Diff reign but usual they stick around 4.4 range.[/i]
[b]Neutrophils 1.9 (anything above 1 Ok, but apparently normal range is between 1.8 to 7.5)[/b]
[i]Again my Nuetro's have been C: Diffed into submission – around 1.6, whereas usually they stick around the 2.8 mark.[/i]
So Colin's bloods are already looking very healthy, which should held him enormously during the early stages of recovery. 😎
Good luck and my best regards to you both 😀
Dai.
Hi Carol,
I have followed this thread closely and was very interested to learn about PAD and other such treatments… so I'll restrict myself to saying that I am sorry you relapsed, glad that the treatment they chose for you seems to be going well and a personal wish that you will soon be in remission, maintenance backed or no and feeling as healthy and fit as it is possible to be at this time. 😎 😀
Loving regards 🙂
Dai.
Hi Tina,
I recommend Wrigley's EXTRA. I don't use chewing gum that often but I do find the EXTRA very, very, good at freshening my breath.:-D
Good luck with it… but I would ask your local pharmacist for advice too!8-) 🙂
Regards
Dai.
Did Slim get on your nerves with 'Are we nearly there yet?'. :-0
Take it easy for a couple of days, enjoy those views and chill… i am sure that won't be an effort. Have a great time you two… meeting with family, exploring the Island, being plain old, ordinary tourists. 😎
Lets all wish Slim the best of health for the next few weeks and may you both return rejigged, looking healthy and feeling fine. 😀
Much love 🙂
Dai.
