[quote][b]Fingers crossed the end is not as near as first thought. Stephen is hoping he will be able to drive again for at least a while.[/quote][/b]
I read and reread your post because something hit me but I wasn't sure what (if I was Janet I'd sneak up on me and have a go with a frozen Hailbut from time to time).
But I found it… not so much the finger's crossed bit, although I'll join you in that gesture… but in Stephen hoping… whether it is to drive… go to France or just getting out and about again… it is the very act of hoping… of feeling able to temporarily rise above MM and say 'that would be good to do'.
Perhaps fittingly for a couple of Francophiles like yourselves (shamefully I have never been to France) I am reminded of a quote by a French bloke called ~François Duc de La Rochefoucauld:
[b]'Hope, deceitful as it is, serves at least to lead us to the end of our lives by an agreeable route.'[/b]
And I truly hope that Stephen's, my own and many more on this board find such agreeable routes to our ends.
Much love.
Dai.
Hi John,
I attend the City Hospital in Nottingham and I too am currently on Rev & Dex (about to start Cycle 7 next week). I live in Aslockton, equidistant between Nottingham and Grantham, so not so very far from Mablethorpe. I used to play semi-pro in folk, folk-rock and MOR bands, duos and solo… although MM has slowed me down in many ways and the PN in my hands has ended my 'hot hands' pretensions.;-)
But if I am well and if I am able I would love to do a few spots during the afternoon – fitting in and around any other entertainers you might find. I would enjoy doing a few sets of Paul Simon/Lindisfarne/Johhny Cash/Country/Folk Pop to help entertain the mass crowds as they strorm the doors of your shop.8-)
If I can be of any help please bear me in mind.:-)
Dai.
Hi Keith,
I believe that the Dex does cause temporary diabetes… the signs are easier to spot for me because Janet has type 2 diabetes. I asked my lead nurse about it a few months ago and she confirmed the temporary effect… but…
I realise that I am nowhere near qualified to question your medics but the reaction I got from my consultant (although she quickly covered it up) when I mentioned the dex dosage that a friend of mine on the same treatment was on was eye boggling.:-0
Your high dosage for the first four cycles seems preposterously high. I know how much I struggle on just 40mg of Dex once a week (DexDay as I write) and my consultant will drop the dosage as soon as my Light Chains reach a steady level. I cannot begin to imagine what my quality of life would be like on your dosage… I am strong and I can tough it out but at those levels? I believe I would looking for a compromise.:-(
What I don't understand is your medics thinking behind such dosages… if it is proven then why haven't the rest of British Haematology come on board? If it is experimental then that should be explained… with the option of higher or (standard) lower doses.:-|
Please stay active if you are able… your posts are always intelligent and informative and what you might see as moans and groans are to others confirmations or eye openers. Of course, sometimes you might just need to let fly and that's fine and dandy… if you can't occasionally show your soft underbelly here then where else is safe enough?:-)
Chin up.;-)
Dai.
🙂 😀 😎 😀 🙂
Carry On Regardless
I hope this extends 'the end' to 'the far end'… growing old disgracefully, huffing and puffing, heave and pull as you get in and out of the Jag… your relief is palpable, I can feel it from here.:-D
Much, much love.8-)
Dai.
Thanks Tom… and thanks indeed to Jo who put me on the right path. I have had H.Pylori myself in the past but didn't even consider that possibility.8-)
So… 3 separate samples off to the lab and we had our meeting with my GP on Wednesday am. He said that the tests take 48 hours from receipt to process a result… after looking closely at Giardia Lamblia he was pretty sure that my complaint was in that ball park and that the tests, while aimed specifically at Giardia, would pick up up on most kinds of parasitic involvement.:-|
That being the case he said that if I was in agreement he was willing to prescribe Flagyl (metronidazole) now. I was in agreement and Janet was mightily relieved.8-)
Now on my second day of Flagyl (3 times a day for 5 days) everything seems to be moving along nicely. I am feeling nauseous (the favourite side-effect along with a metallic taste which I have managed to avoid) but I am willing to put up with that as long as the drug works… and it seems to be doing that. My motions are returning to normal, my cramps and gripes are lessening and generally I feel I have reached a corner and I just need to go round it and put some distance between me and the bug.;-)
I still feel very weak… the act of going to the WC, washing my hands, admiring my new goatee and returning to bed leaves me breathless and washed out… but I am sure that will ease once the bug has been eliminated. This is my rest week from Revlimid and today should have been my DexDay but I felt so nauseous when I woke that I decided to leave it until tomorrow. 😐
I have my consult on Monday next and all being well (apart from being ill with a stomach parasite I feel Okay) I will start Cycle 7… hopefully feeling fit enough to start enjoying what is left of the Summer.:-D 😎 🙂
Dai.
My appointment with my GP resulted in a mutual agreement to test for a bug (Giardia Lamblia) an intestinal parasite that causes the exact symptoms I have noted). 😎
I had tried to be prescient by taking in a sample… but the test requires 3 stool samples from 3 different visits to the WC. So home we went with an appointment to see the doctor Wednesday am. I completed the 3rd sample mid-morning and Janet rushed the samples into the surgery… only to find that the first sample from the previous day had only just departed to the lab… which meant the other 2 samples won't go off until Wednesday am.:-/
In the meantime I felt as ill as I ever have since diagnosis… barely managing to make it to the en-suite and back to the bed. I felt absolutely washed out and in continual pain and discomfort. Janet (bless her) had watched over me all evening and several times during the night… she asked for another appointment for yesterday (granted for 5:30pm) because she felt that I desperately needed something to alleviate my pain and discomfort. When she got home I had her cancel the appointment… I know that I have to wait for the test results and hopefully the treatment which works extremely quickly by all accounts. I will attend tomorrow and hopefully the results will be in from the first sample… my GP was very reluctant to give the treatment blind and I agree. As soon as he has a clue he will prescribe. Apparently the tests can identify several types of parasites, so hopefully we will know better soon.:-P
My discomfort has eased today and the pain is localised. It was batten down the hatches times… the Olympics on iPlayer on my laptop… plenty of liquids, my fan on blast and the window open… I just wanted to be left alone (excluding Janetxxx) – no phone calls or visitors, just a huddle in my bed with my earphones and iPlayer.>:-(
I have been seen by several doctors over the past 12 weeks (since the first symptoms showed… with approximately 2 weeks of the 12 free of the complaint). Each time I have seen a doctor I have meticulously listed my symptoms but not one of them thought to test for a parasite. Jo suggested the possibility to me on this thread… so I looked it up on medicne.net, wrote down the particular bug that seemed to fit closest to my symptoms (about 95%) listed all of the symptoms and presented it to my GP. He was very interested straight away and kick started the tests… he also asked if he could keep my list for research purposes.8-)
So hopefully we can nail this now… I'm still not very good but at least I can function.:-)
Thanks to all… especially Jo xxx.:-)
Dai.
Hi Eve,
I hope that by the time you read this Slim will be line free. I remember feeling whole and physically released after my Hickman Line came out.:-)
Who knows perhaps this freedom will boost his system and bring his platelets up to scratch?
I have had an awfully uncomfortable weekend… I rang in with a temperature of 38.65 on Saturday and after consulting a doctor the bleep Nurse told me to keep an eye on my temperature and to come in to the Day Case if it was still a problem on Monday. I was told to take paracetamol and drink lots but that was it. I was flabbergasted.:-(
So I have had to live with stomach gripes and cramps, excessive wind, extremely uncomfortable visits to the toilet and temperatures that have been swinging from normal to fever with no rhyme or reason.
It's the same complaint I had for the last 2 cycles and after looking up the symptoms I am convinced that I have a parasite called Giardia Lamblia… which can be treated with a drug called Flagyl (metronidazole). I have an appointment with my GP, the same one who was thorough and brilliant the first time round and I am going to discuss the options with him.8-)
The hospital passed the buck on Saturday… at that temperature they should have had me in for examination but I can only surmise that they didn't have any beds… I am not impressed.:-S
Dai.
Hi Gill,
I am so, so sorry that Stephen is having such a rough time with these brain lesions. I have my fingers crossed that the 'Wizard' can pinpoint the main culprits, easing Stephen's pain and hopefully alleviating his double vision.
Are they offering any treatments or maintenance? Has your consultant actually said that Stephen has entered the end of life procedures? If so are you considering Hospice care or do you intend for Stephen to stay at home?
I hope that there is at least one more shot at treatment available… it sounds as if your care team are examining all the options and your consultant sounds like a star.
My thoughts are with you both… as they have so often been.
Regards and much love:-)
Dai.
Woke up this am feeling very good… then out of nowhere, at 1210.pm my temperature shot up to 38.2.:-P
Of course it's the weekend… :-S
I'm fighting it in my usual way… Movicol, plenty of liquids and a couple of paracetamol… but the paracetamol has only managed to 'hold' the temperature, whereas it usully breaks tit. The decision to 'call in' by 5pm.:-(
Its in the gut again… and I had been doing so well since Wednesday.;-)
Dai.
😀 Armchair rowing, swimming and cycling… this week and a whole range of Armchair athletics from tomorrow onwards… its a good way to keep fit.:-D 😎
Dai.
Hi Wendy,
I am currently on Rev & Dex and my readings since starting treatment have read:
300-225-125-212-175-128-200… i was slightly concerned with the last reading but my consultant's response was 'not to panic' as the yo-yoing might well see a reduction on the next test.;-)
I appreciate yours is a different kettle of fish but at my last relapse started in November and was confirmed in January. I went from 0 to 64 – 64 – to approx: 140 – 140ish to 190 before relapse was confirmed. I had a break as I tried and just failed to get on a Carfilzomib trial and started my Rev & Dex treatment in March at the above 300 mark.:-|
So while 10 to 22 is a definite upward movement (more because it has crept out of the 'normal' range) it is still only a shift of 12 light chains… which might be worrying if we were talking about PP's… but we both know that light chains can be talked in cricket scores and still show no effect on the patient.:-)
I hope your mind is settled for the better sooner rather than later.8-)
Dai.
Theresa,
I had no idea that you had lost Peter and was glibly answering your posts in ignorance of your loss. I am so very sorry to hear that you have lost your Peter… There is very little that I can say other than my thoughts are with you and you too Judy, at this time. I hope that you find support and love enough from your respective families to help you through these early days of loss and grief.
Dai.
Tom, Mavis, Tina , Liz and all,
Thank you for your support.:-)
Well it really does seem that the problem has sorted itself out…. At least for now but I am a believer in self healing and perhaps my tactical use of paracetamol and my usual regime of eating little (although my appetite has been more than fine) and drinking fluids for Wales has given my body the chance to boot out the bug of its own accord.
If it does return I will go straight in… But I am hopeful. I am still feeling a tad fragile but it is 'DexDay tm' today and that should boost the system nicely.:-D
Thank you all for your support… It was getting to me with so many off days but I am being positive and looking forward to a healthy Olympics and the rest of the Summer in full bloom.8-)
Dai.
Hi Vicki,
The South West seems to have funding problems in certain areas. I would love to know what their funding criterias are. It is interesting that your consultant says that Periaxafor is 'not available' in the South West…That can only be due to funding decisions and not because of availability… It means that it is not an option due to cost. :-/
David (Perkymite) had similar problems but was successful on his second attempt and look at him now! So I truly hope that plan 'A' part 2 works for Colin and for Chris… and that plan 'B' doesn't become an option… But if it were me I think I would be pressing for answers to the question 'What if?' just in case. 'Crossing that bridge when we come to it' needs to be clarified in my humble opinion… Surely they must have reached that point before and therefore they will know what the options are. If they have never reached that point before then it is positive news… Meaning they have excellent second phase results. Let's hope that is the case. 🙂
I wish you well… I know it is not that easy to face up to or hold down a consultant when you are under such pressure.:-|
Regards 🙂
Dai.
Hi Andy,
At least events are moving upwards and onwards, to coin Tom's phrase. I cannot see Prof Jackson not coming up with a positive action plan and your PP's dropping is a very positive stsrting point.
I wish you the very best for your appointment. You deserve a good break, a break that leads to the next step… then hopefully it will be all systems go. 😎
Dai.
