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…[Read more]

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.…[Read more]

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…[Read more]

Hi, Terry, just somehow deleted my reply, so here goes again. When I was taking Dex in 4 day slots, I had really bad days when I stopped taking Dex, the first day off very down and listless, the next day really black, then a slow recovery over a couple of days. When I took Dex, first day nothing really, then days 2/3 take on the world ! Day 4…[Read more]

Hi, I attend L.R.I. and always get a copy of the consultant’s letter to my G.P., which contains the results,sometimes all, sometimes some ( haemoglobin,neutrofils,platelets,MCV,CRP,eGFR paraprotein, -some of which I recognise, some I haven’t a clue as to what they are – and a brief resume of our meeting.As to what influence I could have on…[Read more]

Hello debgill, this pain sounds similar to the one I’ve been getting for about a fortnight, very painful and as you say stops you in your tracks and has put me on a walking stick. I went to see my GP, who is very good, he didn’t think it was anything to do with Myeloma ( neither did my consultant when I saw her last Thursday). He told me to…[Read more]

I used a firm called Insure Blue, haven’t got their number to hand but can find it if you need it. They were the only company I tried that had a good knowledge of what Myeloma was, what the stages from smoldering through stages 1 to three. Perhaps not the cheapest, but reasonable. If you need the number let me know Jeff

Just read this post David, how fantastic !!! You must feel over the moon, I’m crossing everything that it stays there for along, long time Jeff605

Hi Tony, thanks for the interest. No, I don’t feel I have had or am having a rough time from the LRI I was also on the X1 trial, was taken off it at the same time I was taken off Chemotherapy, once more with no real reason given. I don’t feel I have any major problems with LRI, the X1 team have provided excellent support, both “day to day” and on…[Read more]

Hallo, interesting post, I’ve just posted on the General area, querying whether there is any grading of hospitals regarding Myeloma for excellency, etc, and where to find it if there is. I have been attending LRI for nearly 4 1/2 years, 3 1/2 as smouldering,and over 9 months active.During this time I have rarely been seen less than 1 1/2 hours…[Read more]

Hi, yes I do get a copy of my doctor’s letter, this does let me follow trends in my blood results, and as you said a ( usually ) rather brief resume of what took place at the consultation.Be interesting to see what it says this time. I usually have one of my daughters in the room with me, usually the one who is under investigation to establish if…[Read more]

Hi, thanks to all of you who have helped me understand and to a degree come to terms with my situation. From what you have said it’s going to very much be a wait and see what’s happening scenario, and keeping my fingers crossed. I will treat this in the same way I dealt with the Myeloma when it was smoldering, I went from clinic appointment to…[Read more]

Eve Prokop, Eve for some reason as I’m having problems answering you message, so I am doing so here. Thank you for the reply, I appreciate you taking the time. I am not going the SCT route, due to my age ( 75 ). I found the information you have given me very useful, and much as I have come to expect, and really, what the consultant should have…[Read more]

Just to inject a bit of humour – although having been on the X1 trial since last june it’s only two weeks ago I discovered it’s actually the eleven trial, not the x1 trial ! How stupid is that!Jeff

Hi, Mavis, thanks for the very positive reply. I haven’t as yet had a reply to my email to the consultant, in this I have asked questions concerning what the decision to take me off treatment means to me with regard to remission, what happens if my readings get worse, and why I was taken off the trial – all things I should have asked at the time,…[Read more]

Megan, thanks for the reply. Although I do have an appointment booked for six weeks time, when I shall have blood tests done, I think I shall write to the consultant, as I am still concerned that I have been taken off the x1 trial without fulfilling the ” rules ” as stated in the write-up for the Less Invasive Pathway, for such things as number of…[Read more]

Thanks Andy,I’m one of those people who like to know what’s going on and what to expect, and what adjustments I can expect to have to make in my lifestyle, and so ask questions . I have kept the Zomorth morphine dose low so it’s on the borderline of hurting, I find this stops me overdoing things as it soon lets me know if I do ! Thanks again for…[Read more]

Hi, Andy, thanks for that.It about follows what I’ve found out, I’m not going the SCT route due to age, but have started Velcade with CD, so we’ll see what happens. Were you on painkillers for your back, and were you able to stop thse after the op.? Jeff