[jeff605Participant]

Hallo All. Just had my meeting with one of the consultants at Leicester Royal Infirmary.Quite an important one as it was to decide where we go from a rising paraprotien ( 9 to 25 in 10 weeks). This time, once I showed an interest in my readings the consultant was quite happy to write them down for me and answer questions quite freely. Nice change, whether it was due to it being a Trial clinic with less pressure I don’t know. Jeff

[jeff605Participant]

Further to this a very interesting and hopeful article in Patient Power by Dr. Paul Richardson concerning protozian inhibitors and the very high success rates ( 95% !!! ) being achieved by oral administration in combination with other drugs, as I understand it. As you say Dick, cause for hope There certainly seems to be a lot of work going on with these inhibitors Jeff

[jeff605Participant]

Direct link to this article is :- bbc news bruton’s tyrosine kinase Jeff

[jeff605Participant]

Sorry everyone, it looks like I’ve managed to erase my original post , here goes again !!
A friend sent me this, and I thought it might be of interest :-
Hi Jeff,
Thought you might be interested to see some info on this new drug (Bruton’s Tyrosine Kinase Inhibitors, B.T.K. For short), trialled at Derriford hospital Plymouth and University of Plymouth
Starting in Sept. 2012 by Prof. Simon Rule. Specifically for Leukaemia and Lymphoma (it doesn’t mention Myeloma though), but now the trial has gone world wide,and so far, apparently, it has been almost 100 per cent successful.
Take a look at the BBC news website, look at the news England section, then on the local bit, and key in Plymouth.
Looks promising
Jeff

[jeff605Participant]

Hallo, thanks to both of you for the quick reply, that seems easy enough. Fortunately ( ? ) we live on the borders of two authorities so the travel involved shouldn’t be too far for my friend. His next consultant meeting is very soon so I shall pass on your comments today just in case he has bad news. Thanks again Jeff

[jeff605Participant]

Hi again, What I will do is see if I can get a better idea of any other employees of the company involved such as production workers who have Myeloma, where they worked, etc., and then decide whether to pass the information on or not, will take some time as I shall have to do it on an informal basis- incidentely, I have met other Myeloma suffers at the clinic from Melton who did not work at the company involved Jeff

[jeff605Participant]

Dick, I haven’t checked your calculations and don’t know what criteria you used. I started this thread as interesting, due to the affected group all working in the same place , exposed to the same chemicals, etc, including radio active sources. I am quite aware the chances of determining which, if any, items have caused Myeloma, is remote, if not impossible, especially as what causes Myeloma to strike is supposition at present, as far as I know. However, I still think that this group – and remember there may be more that I don’t know about – is a bit too much of a coincidence. As I said, interesting, even if not much can come from it.I did raise this with one of the consultants, and raised mild interest !! I would add the ethos of the firm involved is such it would never knowingly put the health of it’s workers at risk . Jeff

[jeff605Participant]

Hi, Dick, Yes I do, why? Dusk, I do understand what you are saying, I still think it’s an interesting cluster, though Jeff

[jeff605Participant]

Hallo Jean, many thanks for the information about the diary, I have emailed Myeloma U.K.concerning obtaining a diary, sounds like just what I need. Thanks again, Jeff

[jeff605Participant]

Hallo Graham, just had a thought, when I spent some three years smouldering, the consultants at the LRI quite happily swung the screen around for me to copy the results, or read them out to me. Since I started treatment I think this openness has changed. This might be my imagination,so at my next meeting ( about three weeks ) I shall ask to see the results and let you know what happens. I shall also do some work on finding out just what the figures mean as I admit to being a bit vague about about some of them. Jeff

• This reply was modified 10 years, 8 months ago by  jeff605.

[jeff605Participant]

Hi Andy, thanks for the very informative reply. I usually take one of my three daughters into the consultant’s meeting with me, partly so they can listen and remind me later on as to what was said, and partly so they know what’s going on, as they are all very nervous after losing their mum three weeks after she was diagnosed with unsuspected lung cancer which had spread everywhere. It looks like I shall need to ask some questions and prepare them for possible not nice to hear answers. Let’s hope I can get some meaningful answers from the consultant, as I’ve said elsewhere not easy with this team, although I do trust them to do the best for me, they don’t seem too keen to tell in detail what they are doing without being asked,and I don’t always know what to ask.
Although I try to be upbeat and get on with life, I am , as again I’ve said elsewhere finding this difficult due to my back problem and the mobility problems this causes. I bought a 1932 Hillman Minx last May, sofar have managed about 15 hours work on it and can’t wait to drive it !! If I could get some idea as to life expectancy – difficult with myeloma I know – I could stop worrying about decluttering the house and get on with life !
This is getting into a moan so I’ll stop now. Thanks to all who have helped me come to terms with what’s happened, I think I am much better prepared to face up to the future now.Jeff

[jeff605Participant]

Hi Frances, I started off with a ” bad back ” after putting something in the boot of the car. had it before, so wasn’t too alarmed but it didn’t get better, a nuisance but bearable. THEN one morning got out of the shower, found myself hanging on the radiator in intense pain. Into an ambulance off to hospital for a few days. After an MRI scan ( got another due absolutely dreading it !!) Turned out T11 and T12 were damaged, had some radiotherapy, and have been on morphine, gabapentin and paracetamol ever since. this controls the pain quite well, but I am unable to do very much walking, light gardening or the like for more than 15 mins or so.( I kept the morphine tablets at a level that provided early warnings of overdoing things) I am waiting for a vertobroplasty operation which fixes the damaged vertebra together, and I gather virtually eradicates the pain and weakness.
All I can suggest is enquiring if morphine being prescribed is possible, it certainly helped me.I also found the MacMillan nurse very helpful,it may be worth contacting your local one.Hope my experiance helps, Jeff

[jeff605Participant]

Hallo Eve, thanks for the reply, quite inspired by your husbands story. I’m sorry if my last entry sounded downbeat, probably caused by the effects of the anemia and rather bad news concerning my daughter, who is hospitalised just now. I am actually a lot happier with my understanding of my situation following the last consultant meeting and feeling that I am still under their care, and not now feeling somewhat abandoned. I am still apprehensive of the future as I would think we all are. I think one of the things that ” downs ” me is the physical restrictions I am suffering due to a combination of back problems, sciatica and the general tiredness and lack of energy due to anemia stopping me getting on with hobbies and pastimes, even walking more than a few hundred yards,especially as I actually feel quite well in myself !! I know I have had things pretty easy concerning drug reactions and how I have felt in myself, compared to others, so apologise for going on and sounding sorry for myself – well I am a bit !! Jeff

[jeff605Participant]

Hallo to all. Well here I am, 10 weeks of ” wait and watch ” later. Just had a consultant meeting last Thursday, with a consultant that did listen and answer questions.Not the best of news, p/p has risen from 9 to 15, the consultant explained the team was to discuss and decide on future treatment on Friday, I don’t know the results of this as yet. The other negative results from an earlier meeting two weeks previous was that I am quite anemic, which explains the tiredness, lack of energy, etc.( have decided to stop driving to the hospital 25 miles away as I found I was losing concentration on the way back ) I had an urgent ( 5 days later ) endoscopy which didn’t show significant bleeding, so had a blood transfusion last Friday,
(doesn’t seem to have much effect yet ) with further investigation to follow.
I asked the consultant about being taken off the X1 trial he explained it was to prevent the trial pathway from limiting the options for further drugs. Makes perfect sense, just wish I had been told before, ( when asked reason previously was told that the trial had finished with me !) not knowing caused me worry and more importantly affected my positivity to my future. So, now waiting to see what ” they ” are planning for me. Regarding my back problems, I have been scheduled for an MRI scan. I have had one of these before, and found it quite difficult, I am claustrophobic, and one of the drugs I am taking gives me a very dry mouth, when lying on my back the difficulty in swallowing this causes gives me a lot of distress. Any suggestions in dealing with this gratefully received .
All the best to all, from Jeff

[jeff605Participant]

Hi, don’t like this new site !!
Just found this subject while browsing, reading through it it seems the great majority of subscribers are happy with the NHS hospital they are attending, which is good. Even though I have been complaining about the lack of freely given information by the consultants at the LRI in Leicester, – not on my own I would add – I wouldn’t complain about the actual treatment, the staff or response to problems. There is a team of consultants, you don’t often see the same one twice, they do quite obviously work as a team and discuss ” us ” in team meetings with other disciplines being co – oped as necessary. It is a large hospital, and seems to have between themselves and the other two associated Leic. hospitals most of the scanners, etc. needed. I have tried to find information on such things as survival rates, hospital ratings, etc, but found it difficult to get any information,let alone any meaningful information. I have written this in case anyone has read any of my moans in other entries and put them off LRI.
Best wishes to all, Jeff605

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