[jeff605Participant]

Hi, Dorothy, left it a bit before bothering you, how was it? Hope it wasn’t too traumatic. I did remember, and thought positive thoughts for4 you. Jeff

[jeff605Participant]

Hi, Dorothy, having recently had a vertobroplasty op, which due to the professionalism and reassuring relaxing manner of the team was much easier to endure than I was expecting, I would say try not to worry too much, easier said than done I know. I am expecting further surgery to deal with spinal cord compression which it seems I am suffering from, so do know how you are feeling. Just to further complicate things I today received an appointment for a SeHCAT test, wasn’t expecting it and don’t know what it’s for, and neither do the team doing it ! Ah well, I’ll just assume that “they” know what they are doing for now, and ask questions next week at the Myeloma clinic.
So, Dorothy, try not to worry, and all the best for the 17th, I’ll be thinking of you. Jeff

[jeff605Participant]

Hi, Maureen, glad your husband is managing ok, it’s good to hear. I don’t know exactly what’s going on with my spine. as far as I know I haven’t got a tumour, it sounds as though it’s more collapsing vertebra causing the problems. I shall find out more when I meet the spinal team, but your husband’s history is reassuring, although I’m sure it hasn’t been easy for him. Thanks for taking the trouble to post your reply, and all the best to both of you. Jeff

[jeff605Participant]

Hi, Tom, thanks for the feedback, one thing less to worry over !! Jeff

[jeff605Participant]

Dorothy, you post is one of the little things that lift one up, thank you for the support and words of wisdom. There has been and are so many bad health things going on in my family that taking each day as it comes along has long been my mantra. Thanks again for the kind thoughts, they help.
Best wishes to all, Jeff

[jeff605Participant]

Hi Susie, I’m on Zometa monthly with no side effects that I know of. I read up on this drug on the internet, the only serious side effect is the ostiochronosis ( ? ) of the jaw, and this is so unlikely in % terms that I decided to go for it, benefits outweighing the risks. Make sure your teeth are in good condition and any work needed is carried out before starting the Zometa, if you need any extractions or such doing you need to come off Zometa for 3 months, a long time to have a toothache !! I wasn’t warned about this before starting Zometa, and dread teeth problems happening. I get occasional leg cramps, hadn’t tied it done to the Dex which is interesting. It’s difficult to explain to someone who’s not going through all this alone exactly how the bad times happen, sometimes I wake up with it, sometimes the littlest thing can set it off, I just get busy doing something, or if it’s in the evening go to bed early !! I try very hard not to feel sorry for myself knowing how much worse others are suffering with their Myeloma, some days it doesn’t work and I feel quite ashamed of myself.
Hope all goes well with the Zometa, regards Jeff

[jeff605Participant]

Really good news Andy, so pleased for you, fingers crossed things keep going, and thanks for all the upbeat and helpful forum posts, all the best for the SCT etc. :Jeff

[jeff605Participant]

Susie, Regarding research about SCT, it was partly on here, talking to the consultants – I see anyone of five at the clinics, some are more helpful and easy to talk to than others – talking to the Myeloma specialist nurse, and one or two fellow Myeloma patients that have had SCTs. The overall impression I formed was that it was a bit too arduous for me, and with other family health problems would have been difficult to manage. As things have turned out over the last eighteen months or so it was definitely the right decision, life hasn’t been to kind to us as a family over this time, I’ve certainly been kept busy ! However, really it’s just a matter of get up and get on with it, as far as I am concerned. I have written before that I have been very fortunate that any side effects have been pretty minor, which has been a real bonus.
I hope things continue to go well for you Susie, I am still amazed that I am here to enjoy perhaps most of all three lovely great grand daughters, they make it all worthwhile.
Best wishes to all Jeff

[jeff605Participant]

Hi, Susie, really good news, so pleased for you. I’m in my 3rd lot of chemo sessions, now on Revlimid and Dex, which seem to be doing the job, p/ps hovering around 4.5 to 7, despite several health upsets. I’m hoping for a further drop now other health problems seem to be settling down. I’m 76, was diagnosed way back in 2009, smouldered for some 3 1/2 years. Although at the time I was pretty fit, I decided after research against SCT, and still think it was the right decision. I’m also on monthly Zometa.
Fingers crossed for you, zero p/ps in sight must be a great feeling. I sympathise with you on going through all the ups and downs on your own, it’s hard at times, isn’t it ?
All the best for the future, Jeff

[jeff605Participant]

Hi Tom, I’ve been on your new regime of Dex on Monday morning, Revlimid each evening for some time. I’ve had side effects from the Dex, feel great Mon and Tuesday, usually overdo things and am not quite so good Wednesday, pretty down and tired Thursday, could hang myself Friday, and slowly pick up over the weekend ready to start again ! Once I realised what was causing it I found I could deal with it.The other side effect which I don’t know what’s causing it, are very heavy sweating in the morning, resulting in change of wet clothes, and being completely whacked out until about lunch time. The only time I was delayed in taking the Dex until late in the afternoon I had a terrible nights sleep. I do make sure my coffee and tea are pretty weak. Hope this helps, Best Wishes, Jeff

[jeff605Participant]

I have quite a loud whistle/ rustling sound more pronounced in left than right ear. It is, I believe a possible side affect of Velcade which I was on for a while. I previously had a slight noise, but then I worked in a canning factory for nearly 30 years. Can be quite annoying at times.
Best Wishes to all, Jeff

[jeff605Participant]

Hi, susie, Some time ago I started a thread on lack of information being given by consultants. It became obvious from the lengthy correspondence on the subject that this was very variable across the country, with some hospitals being worse than others. At Leics. you seemed to have to drag information out of some of the consultants, almost as if it’s non of your business to know ! Things do seem to have improved at Leics. with results being shown and discussed if you want them. But, as you say, Susie, exasperating and frustrating.
Jeff

[jeff605Participant]

Susie, yes that’s correct, no mention of dental care etc. at all. Susie sorry if you have mentioned it already, which hospital do you attend? I go to the Leicester Royal, where I experienced a similar lack of information after an emergency operation resulting in a ileostomy pouch. I woke up with it and was more or less left to adjust to it, and get on with it. Which I have. I have had help with problems since I should say to be fair.
best wishes to all, Jeff

[jeff605Participant]

Hi, all. Well, that’s interesting ! Would have been nice to have been advised about these dental problems and a visit to the dentist prior to starting Zometa many months ago. Still fingers crossed no evident dental problems so far , however 3 months is a long while to have a toothache. Good tip about the mouthwash versus salt though, Andy. Jeff

[jeff605Participant]

Graham, your experience as described in your post is nothing short of disgusting ! I have had the problem of not being sure if the doctor is talking to me or not, but not to the degree you have experienced. It’s such a shame there is this variation in behaviour and treatment by consultants an experience such as yours destroys your trust in them, whereas my recent meetings with a surgeon about reversing a stoma – although I didn’t get the result I was hoping for – couldn’t have been more helpfully, clearly and kindly presented, and my vertobroplasty operation on Monday last was carried out in a caring and dignified manner. ( don’t know just how successful it is my back pain is reduced and I am standing up straight, not sure about walking yet, think it will take some time to build this up).
Knowing just how painful back pain can be I really feel for you Graham , and hope your doctor can sort the drugs, etc, out. Being caught in the middle of consultants and GPs isn’t a good place to be as I know from past experience.
I hope you get relief from your pain soon Graham, and wish you all the best for the future. Long may the MGUS continue, mine lasted 3 1/2 years. Jeff

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