Hi Jo,
Sounds like you had a good time, even if some of it was through your grandson's eyes. I have only visited the IOW once, for a three day stay when my then Brother-in-Law was a prison officer at one of the high security prisons. I said in 1978 that I would definitely go back because what I saw of the Island was very attractive… but alas I never did. Still, there's time yet and plenty.;-)
The weather is breezy but sunny here in rural South Nottinghamshire, hope it is the same or better for you.:-)
Dai.
Ouch!!!! 4 hours??? I'd be writing a horror story, never mind a letter. Slim's veins must be akin to optic fibres. When is he due to have it out? At least that shouldbe much easier. If it looks like being a rough job I'd ask for a sedative at the very least.>:-(
I had mine (badly as itturned out) fitted by a radiologist Doctor whohad the benefit of a full x-ray machine and monitor to guide the line to the right place… sounds like Slim got the thin straw to me Eve.:-/
Here's hoping the exit strategy is better that the entry.:-P
Dai.
Great news Mari, Stephen has done well to get to 2.1m… exactly the same as me. Due to my extended week on the harvester my Hickman Line fitting had to be moved but they had already booked me in for my Mephalan for the following Wednesday (presuming my HL had been fitted on the previous Friday).:-P
So I had to have my Mephalan and rinse through a cannula in the back of my hand… which was not ideal and I spent some time talking to Hughie through the big white telephone in the bathroom. The nurse said that that would not have occurred if I had had a Hickman Line… but it was an experience I suppose.;-)
Good luck to Stephen for the Trio of events on consecutive days… none of them are traumatic… even the HL fitting is painless, if a little rough with pulls and tugs but nothing to write home about.:-)
I hope that you both enjoy your break… relax and chill, all I am sure will be well.8-)
Dai.
Come wind and rain, blow and drench,
Drizzle and fan the leaves on the trees
For I am well and well enough
To take whatever you bring with ease
But Summer is here despite your trials
And look the sun has found a space
That I may walk my garden path
Enjoying the warmth from Sol's bright face
Hi Eve,
All's well here and it looks like 'summer is acumin in'. I hope that Slim is improving with each day… Slow but sure and that you are staring to breathe a little easier as you see him improve. 🙂
I hope that you are finding a little time for yourself… You have had to cope with so much recently and you deserve a break… In both senses of the word.:-)
Regards
Dai.
Hi Amelie,
When Calgene were granted their European licence the 7% risk was not known… that evidence was gathered during the first couple of years in use. The European licencees then asked for further evidence/trials from Calgene who decided instead to withdraw Revlimid as a partner drug and maintenance drug to concentrate on its values as a stand alone treatment (with the ubiquitous Dex of course). 😉
I think this makes sense. It coud be that Rev has conflict issues while working with an active chemotherapy and they may well carry out research in that field. I am not sure if there have been any issues as a maintenance drug but once again they withdrew Rev from that sector to concentrate on the main event.:-)
Once you reach the Revlimid treatment stage you know that it is the last big hope for a relatively long break from Myeloma. 2% to 7% is a very small risk when the median for the treatment is currently 30 months (2.5 years) and expanding all the time as data comes in from around the world for a relatively new drug.
Carfilzomib (to be traded as Kyprolis) has now been officially licensed by the USA F&DA (Food & Drug Agency) so it should be with us within the year. Kyprolis acts in the same way as Velcade, actively capping and killing Myeloma cells. It is being trialled around the world with Revlimid and Dexamethasone and that may be its role… bringing the Myeloma right down to allow Revlimid a strong base for extending our life spans… or it may be used as a stand alone. The current world trial, the 'Aspire' trial, should throw up some interesting results and it is my hope to continue on Rev & Dex until Kyprolis is licenced here.:-)
I believe in Revlimid and my concerns are with staying compatible with the drug rather than picking up a secondary cancer. If I should then so be it but in the meantime Revlimid will do for me big time.8-)
Dai.
I asked my consultant about Curcumin last year, just as I was about to start my Velcade treatment. Unlike her she gave a big sigh and placed her hands on her desk. Not verbatim but this is the gist of her reply:
'I am sure that there are a number of supplements and vitamins that will help Myeloma patients with their general health… but they should be treated as such and not as a solution or curative for Myeloma per se. Please look at those supplements and vitamins that might boost your energy levels by all means but don't introduce anything in to the mix during treatment… after, fine but not while you are going through treatment. They may be of help but they are just as likely to either conflict or interfere with Velcade etcetera.'
It seems that she gets many such enquiries… I know that she is not against examining alternative medicines but it seems that certain strong supplements, such as Curcumin are looked at more as curative that supplementary and that seems to disturb her slightly when patients are taking on on very strong treatment.
My 2p worth of experience.:-)
Da.
Back to the Day Case Unit for blood tests and check up. Eveerything's back to normal in the stomach and bowels, my HGB remains at 9.0 (10.1 on Monday, 9.0on Wednesday) but it should start to pick up now that I am returning to normal. The good news is that my Neutrofils are improving (1.5 on Monday, 2.3 on Wednesday and 3.5 today) todays 3.5 is the highest they have been for months, so I'm happy with that and I am hoping it is an indicator for my Light Chains. 😎 😀
Feeling good going into the weekend, even if I do have Big Ers type rosy cheeks.:-P
Dai.
Hi Stephen,
Unfortunately it looks like I lost my bet which was for Tuesday 17th and your first show was actually Monday 16th with that 0.03. Still, I'm happy to lose because it got you home a day earlier. Your readings will go from strength to strength each day now but please take it very easy for the first few weeks at home.
Surrounded by familiar things and familiar people it is tempting to try what you might perceive to be ordinary things but always think twice says the voice of experience who ended up cream-crackered by the smallest of tasks.;-)
But you are home and the SCT procedure is done and dusted… and that is all that matters for now.8-)
Dai.
Hi Amelie,
John may get quite a good remission from his SCT and after that there is Velcade, if he hasn't already had it, Revlimid and the a number of now trialled but by then licensed shorter term treatments which will take him into end of life procedures… but that could be years to come. 😎
Reconcile yourself to the fact that MM is terminal but John could have along time yet and instead of sleepless nights think of the ways in which you can support him and make his time more loving and creative. Be brave and make yourself central to his life.:-)
Dai.
Hi Keith,
You are of course completely right… all MMers deserve the right to be treated equally but we know for certain that that is most definitely not the case. It is not a deliberate course of action, I know that. It is, in most cases a result of an unfair post-code lottery. Those authorities with higher funding tend to produce hospitals with either dedicated haematology units or hospitals with excellent haematology medics. Those with poor funding tend to produce hospitals with limited facilities and fewer haematology medics with no MM specialists. Some of us are highly fortunate to live in authorities with either dedicated units or a mix of local hospitals for lesser treatments and area hospitals for the more important stuff. Some of us have such facilities on our doorsteps and others have to travel great distances.
Personally there was no choice as far as I was concerned… I wanted to live, so I moved from my much loved West Wales to Nottingham, which has some of the best medics and best facilities in Europe. But that's me. I miss Fishguard desperately but I know what I needed to do so I did it.
Hi All,
As for Revlimid, the manufacturing company pulled the plug on Revlimid as a frontline and maintenance treatment in Europe because of the 2nd cancer queries and the call for further trials. Of primary importance to me is does it work and what is the median? The risk factors are of secondary importance, because I am pretty sure that the initial trials could not have produced anything of great risk otherwise it would never have been sanctioned.
Celgene has done the right thing as far as I am concerned. By only providing Revlimid as a 'Stand Alone' treatment (yes, I appreciate that the ubiquitous but proven Dexamethasone is its partner… so it is not truly alone)… but it has no other major partners such as a chemotherapy or Thalidomide etcetera.
As Rev & Dex as a primary treatment is easier to monitor and provide data. 2% is the average chance of secondary cancers across the board… Revlimid has shown up to 7% in all its guises… so let's see what it shows on its own. I do not consider 7% a prohibitive risk any way, not when it could provide me with the chance of a relatively long break from the ravages of MM. It should be remembered that when you get to this stage the other currently available treatments are relatively short term options… with the next step after them end of life procedures. So a 7% chance of a secondary cancer against a current median of 30 months (and expanding) is an absolute no brainer.
Dai.
Brilliant.
I am glad you are out and at home. As Woody Guthrie said:
[b]'Take it easy but take it'.[/b]
Now… for the important Q. When did you first achieve 0.1 or more? I placed a considerable bet with myself that it would be Tuesday the 17th.
I hope I am right because I will treat myself with my winnings 😀 but either way I am so glad that you are now officially on the road to recovery and I hope that your remission is both long and happy.8-)
Dai.
[quote]'I may look ok but inside I'm dying'[/quote]
Thanks Andy… I suppose we all have felt like saying that at one stage or another… but because I believe in the law of attraction… i.e. we get what we think… these days I prefer to think:
'I may look ok but I have a terminal disease… but a terminal that is several stations down the line.' 🙂
I am now at station No. 4 with station No. 5 a long way down the track… that's what I have to keep thinking and believing… I believe that is the only way to think. 😎
Hi Keith,
I have no doubt whatsoever that it is the Dex that is making you feel as you do and not the Rev. I have no idea why your consultant is throwing so much at you and I am in no way saying that he/she is wrong… I am no medic… but I do know that my dose of 40mg, once per week, is the maximum that my consultant would consider for me… to be adjusted when my light chains come down and stay down.
[i][b]Quality of life is so important to us MMers and our treatment should not reduce that significantly, either to hammer the disease or for the sake of experimentation. For me you seriously need to ask if this extraordinary high dosage has worked befo[/i]re.[/b]
The American way seems to be 'less is more'… a concept that my studying of MM leads me to concur with. If your quality of life continues to be so affected after Cycle 2 I would seriously consider asking/demanding a reduction. But please don't consider any action until you have looked into Dex doses generally and specifically… mine is a gut reaction based on how my dose of Dex affects me… and I am looking forward to the day when mine is reduced because I know my quality of life will improve greatly when it occurs. 😎
Dai.
Hi Mari & Ali,
As someone who spent 5 days on the harvester plus 2 midnight returns to the hospital for Plerixafor injections my sympathy levels are muted. I was more than happy to spend the time on the machine and the midnight flits, even though I was tired and each trip was a 40 mile round journey. I don't mean to sound harsh but my mantra was 'Whatever It Takes' and if it takes 4 or 5 days to ensure that I can secure my SCT then so be it. A lot of boredom and patience now for a chance of a few extra years life seems a fair trade to me.
All the very best of good fortune and if it is of any comfort my Professor said he would of carried out my SCT at 800,000 (I finally achieved 2.1M).
Hi Ali,
Your husband sounds the very kind of close family your Mum needs… and she is proving to be an independent and very brave person indeed. I agree totally with Eve too… the carer is under just as much pressure having to watch and respond… so take care of yourself as well.
Dai.
Hi Eve,
Last winter Janet had two colds, one with a cough that seemed to last an age but I didn't catch either of them. I don't understand why I didn't catch her colds but I am grateful that I didn't.
My stomach bug is/was just that… our Grandson, who stayed with us last Friday has been off colour these past few days, complaining of stomach ache and, unlike him, he has been off his food. Janet had an upset stomach on Monday and felt off colour for a couple of days but is better now. Pre-MM I most likely would have felt the same as Alfie and Janet but now a minor bug has turned into a 15 day ordeal, needing 2 different kinds of anti-biotics to bring it under control. MM amplifies minor conditions and needs intervention by way of anti-biotics or other medications where normally a couple of paracetamol and a days rest will do the trick.
[quote]So are you are ill because markers reflect illness or can the markers not show illness,but you can see someone is ill.[/quote]
I believe both can be true. Yesterday I looked good and hot and very bothered apart I felt good.but the thermometer told a different story. I have days when I feel and look really out of sorts… with no temperature or bodily function issues present. Sometimes MM can catch up with you and give you a bit of a kick but as often as not it is the medication that is meant to salve and protect that causes these off days.
There have been 3 or 4 occasions over the past few years when I have forgotten to take my medication, for instance I made Janet breakfast in bed a couple of weeks ago and I sat on the edge of the bed and ate my breakfast as we talked of this and that. We agreed to get up and go to Grantham to view some sale items… so I finished breakfast and got dressed and out we went. I broke my routine and missed my medication ritual. I realised my error when I started with severe flu-like symptoms around about 1pm. Previous medication misses helped me recognise the symptoms and it being too late to amend the error I had to bite hard and wait for the next round of medication. It made me realise once again the importance of regular medication routines but the nasty reaction was nothing to do with my MM.
Generally I don't look ill… generally I am not ill. I suffer from a disease that destroys my bone marrow, decimates my immune system and makes my skeleton look like a rusty, pockmarked chassis.. but with good bodywork that disguises the underlying problems. But the degenerative issues only occur outside treatment.
Most of my bone damage occurred over the winter and spring of 2008/9 when my Wales based consultant decided against any treatment. Once it caught hold MM decimated my body. If MM had been diagnosed in that year I would now be like a lot of people on this site with few structural issues and able to travel without fear with few mobility issues. I still find his attitude and care deplorable and unforgivable… but this is here and this is now and I feel good.
Dai.
Thank you Mari.
II suppose I am used to seeing it bustling and busy but now it was 5:30pm and the Haematology Day Case Unit was eerily quiet. I was sitting in the waiting area near to the main entrance, waiting for Janet to pick me up, when someone came out of the lift. It was my consultant, head down looking lost in her thoughts. She looked up as she passed me, did a double take and stopped.:-)
I explained about my temperature and the stomach bug and she concluded our conversation by saying that I looked well. I didn't say but my bloods were better than on Monday when we had had our consultation and, like it so often is, if you didn't know I had MM you would have thought that I was quite normal. And that's almost the truth. I told her that if it wasn't for my current infection and feeling slightly hot and bothered, I was feeling good. As a matter of fact I told her that apart from my infection and I felt fantastic. 🙂
A strange word to use but its true.
It's all relative of course. Pre MM when I was the landlord of a pub/restaurant and developing my audiobooks of Welsh folktales I was busy from dawn 'til dusk. I enjoyed being busy and although a few visits to a gym wouldn't have gone amiss, I was, to all extents and purposes, quite fit. Now I only look the part. 😉
I suppose I now base my levels of fitness and wellbeing on how I felt pre-frontline treatment. I tend not to think of pre-MM… not a conscious act but an acceptance of a new world… the world of MM. Following that criteria I did/do feel fantastic within my own parameters. 😎
My mobility is limited due to my extensive bone damage. My orthopaedic surgeon recently showed me a map of my body; not a pretty sight.:-0 Apart from my two existing fractures he pointed out another one (which wasn't bothering me) and several areas where my bone marrow was almost non-existent. He said, quite cheerily, that due to either weight bearing functions or quantity of use, that these areas could fracture very easily and at any time. He made Janet laugh by saying that if he was fifteen years younger when he was a registrar (and not the head of orthopaedic surgery for the Nottingham area hospitals) he would love to put me under and go for it. He said that there was nothing wrong with my skeleton that a dozen pins couldn't cure.:-D
So, I can't walk very far… but I do so unaided. There is very little I can't do that I either want or need to do. I can go out shopping and visiting with Janet and I almost always drive. I can dead-head my roses and cut back selected plants and bushes. I have to have management strategies when I do go out but these are accepted by us both and they work. 😀
So given bones and best practice, staying with boundaries and applying management strategies… I do feel fantastic. Not relatively fantastic… but new world, new rules fantastic.:-)
And that will do for me. 😎
Dai.
