[jeff605Participant]

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 usually recovering from doing too much on days 2/3 !! Terry, I stopped drinking fairly heavily when I started Chemo and went to zero alcohol, and still had the side effects from Dex, so perhaps you can rule that out. Hope this helps, my pp had stabilised at 9 and I’m on a wait and watch and have my consultant meeting on Thursday, so am a bit nervous waiting to see what has happened. Good Luck Terry and best wishes for the future, Jeff ( bad news is, not bothered about drinking, lost the taste for it !!!)

• This reply was modified 10 years, 9 months ago by  jeff605.

[jeff605Participant]

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 treatment if I think any of these are wandering in the wrong direction I have no idea.I really just try to have faith in the ” experts ” and trust them to do the best for me.Am I wrong in taking this attitude? I have expressed in the past on the forum that I feel that information is not voluntarily given by the consultants, although they will give me result readings on particular items, and answer questions if I ask. The ” randomness” of this disease makes it so easy to become depressed and continue to fight to maintain a positive attitude, I am at present struggling to do so after my last consultant meeting, where I had news that wasn’t that bad but that I wasn’t expecting and was badly presented to me. Ahh well, I’ll just carry on day by day and get on with it ( Really compared to some of you out there I’ve not had it so bad) Best wishes to all Jeff

• This reply was modified 10 years, 9 months ago by  jeff605.

[jeff605Participant]

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 increase my morphine which I am already on for back pain caused by Myeloma affecting it. This has eased it but not completely ” outed ” it. So I should certainly see your GP at least to get some relief as the pain certainly needs at the least some management. Sorry I can’t be more helpful.Jeff605

[jeff605Participant]

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

[jeff605Participant]

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

[jeff605Participant]

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 the occasions I have needed extra help and advice. The day ward staff always do their best to provide a quick sympathetic service, with help to provide mutually convenient appointments, etc.As I’ve said I’ve not seen the new ward, etc yet. Looking back over my posts I’ve realised my main concern has been lack of feedback from consultants, perhaps I just want to know too much,or need to ask more questions, so perhaps the fault is mine.Jeff605

[jeff605Participant]

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 after appointment time, sometimes over 2 hours late. ( I don’t mind this I understand there are some people much iller than I have been, some of these requiring far longer with the consultant than I do so far) This a also a very busy clinic. I haven’t seen the refurbished ward yet, will be doing so in a few days.
The staff at all levels are excellent, the one area I – and I am not alone in thinking this – am not happy with is the consultants seeming not to give in depth information easily. Admittedly we probably don’t ask enough questions during the consultancy, but it it a high stress time.For example, I was told I was in semi – remission, with no explaination as to what this meant for me.
Can’t say much about the football, wrong shaped ball !!

[jeff605Participant]

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 she has Myeloma or not, we jog each others memories and recall what was said. I didn’t have any questions going into the meeting as things were going well, as I said previously, what happened threw me completely.
Sorry to hear you had serious PN, I have minor PN in my fingers and toes, wearing off in my fingers since stopping treatment, but not in my feet yet. Fortunately as said, only minor discomfort.
Regards, I hope all goes well with your treatment Jeff

[jeff605Participant]

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 clinic appointment and put it out of my mind inbetween appointments as much as I could, and got on with life.Once I get my back sorted out I should be able to get back to my hobbies and think about holiday ideas. I shall however, still try to get answers to the items mentioned in this discussion that are worrying me regarding my being taken off the trial, etc.
Thanks once more for the help and support. Jeff

[jeff605Participant]

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 told me. Might I add you put it in much the way my late wife would have !
Although at present I am a bit restricted physically due to Myeloma affecting my spine, I am waiting to be called for a vertobroplasty operation ( this involves injecting a resin around the damaged area of my spine ), when this is done I shall take your advice and take a holiday.
It is all a bit scary, but I take the attitude of taking one day at a time, and try not to worry too much between consultant visits.
Thanks once more, and best wishes to you and your husband, Jeff

[jeff605Participant]

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

[jeff605Participant]

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, I think I was so suprised by what I was being told I went blank ! Talking to a friend of mine how has been fighting mleloma for some eight years, we agreed the one thing the consultants at Leicester aren’t good at is telling you in detail what is happening and why. You seem to have to drag the information out of them. The one thing remarked upon is the very good response I initially had to the chemotherapy, what significance this has I don’t know.Thanks again Mavis, best wishes Jeff

[jeff605Participant]

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 courses of VCD, and randomisation onto maintenance. It may be that I should trust my team to know best, however the way it has happened makes me wonder if there is something else behind it, such as me being inelegible for Velcade. As you said, Megan, you feel vunerable enough from the changes anyway, without any additional worries.One of the major problems with Myeloma is the indiviual way it affects us, no one can say when this or that will happen, so I don’t know if this decision is good news or bad.Anyway, I shall continue taking life one day at a time, and at least hopefully enjoy getting my sense of taste back!! Thanks again, Jeff

[jeff605Participant]

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 the reply, Jeff

[jeff605Participant]

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

[Author]

Posts