[jeff605Participant]

Hi Capeltor, thank you for taking the trouble to reply, I am so sorry to hear of the loss of your husband. What you say is very interesting,I have noticed of late that I seem to be drinking more than previously, which is another sign of possible diabetes I have been told.I shall call in at Lloyds Chemists and get myself checked. Steroid induced diabetes is a new one to me and I am sure to others on the site, so thanks again for the information Best wishes, Jeff

[jeff605Participant]

Hi Val, although Myeloma , according to my consultant, isn’t hereditory, my middle daughter has been found to be MGUS. So my advice would be to get them checked.After all it’s not an arduous test, just blood test, and if the worst happens, early diagnosis is best. Best wishes, Jeff

[jeff605Participant]

Hi, I don’t know if this will work, it’s an every day scene for most of us oldies !!I laughed at this until I realised that this is exactly what I do. Now, finally, somebody has made a movie of it!
Age activated Attention Disorders
No, cant attach it, try looking for it search `
BorehamwoodCamCorderClub
Films we’ve made
Age activated Attention Disorder

“This is definitely not funny nor amusing. If
I was you I would simply ignore it completely,
it is however honest and honesty is the best policy. Although,
when you view it you may well feel offended but relieved
you are normal and dementia has not yet got a real grip.”
Looks like a normal day to me?????

Just 2 minutes and 56 seconds of video.
Just a bit of light hearted diversion, hope you enjoy it !! Jeff

• This reply was modified 9 years, 6 months ago by  jeff605.

[jeff605Participant]

Hi, the amount of pain seems to vary from person to person, like Tony I had mine at the Leics Royal, ( twice) with gas and air, and have had worse at the dentists. Whether it depends on the operator or bone density I don’t know. Anyway I hope yours is not too traumatic, I’d sooner have a BMB than a MRI!! Jeff

[jeff605Participant]

Hi, so sorry to hear of the way you are being treated, and the lack of help being offered. When I was put onto treatment Macmillan contacted me if I remember correctly, and arranged such things as benefits, alterations in the house, blue badge. Can I suggest you contact them to see if they can help. As Dusk said, whenever I have been on antibiotics the chemotherapy was stopped until I was clear of the infection – usually chest infections. I hope you manage to get some help at what is such a stressful time for you and your father. I understand only too well the rapid change from being an active person to an very much slowed down old man, it is a very disturbing thing to live with, and is no doubt causing your father distress. Jeff

[jeff605Participant]

Hi All, just reading the latest Myeloma UK magazine article on ” Myeloma and Cognition” Three things causing short term memory loss etc, Chemotherapy, anaemia, and pain killers. Well that’s three out of three for me haven’t had SCT, but am 76, plus well stressed. No wonder I can’t remember what I went into the kitchen for, or who did what in the book I’m reading !! As for films, same problems, plus added one of missing bits due to falling asleep now and then. Sound familiar? Never mind, pps slowly falling despite a couple of infections stopping chemo for three weeks, down to 3.7 now, so who cares about the above problems, or the rotten cold I’ve caught? I don’t !!!
Best wishes to all, Jeff

[jeff605Participant]

Hi,Richard, well,it certainly could be stress, I have been a bit pushed of late. Its most peculiar though, very fine almost like paint overspray, even showing on my nails, so perhaps it’s of fungal origin. Being as usual with everything medical its shown up on a Friday, I’ll just have to keep an eye on it over the weekend .At least up to now it’s not itchy or painful Thanks for the interest, hope your problem is clearing up Jeff

[jeff605Participant]

It looks as though this was a bug of some sort went to bed very early Wed night woke up at about 2:30 soaking wet through with sweat changed everything and started feeling better very quickly and am now back to whats normal for me. Makes a change from waking up wet through with a burst stoma bag !!
Just getting in the shower this morning and noticed a scaley sort of rash creeping up both feet from toes to past my ankles. Not irritating, bit strange looking though. I’ll peruse the drug info, and have as look on tinternet, but does anyone have any idea as what can be causing it ?
Wishing you all well, Jeff

[jeff605Participant]

Hi, all. Tom, I hope all is going well. I am now on my 11th course of Revlimid and Dex, up to now it has been as above. However, the last few days I have been getting more and more exhausted, falling asleep very easily and seem to wake up freezing cold although the heating is on. Today, I had to have a sleep this morning – not unusual – I spent an hour this afternoon sitting down in the garage doing a couple of jobs, had to go in at 3 I was so tired, and went straight to sleep, woken up by the phone, and then went back to sleep until about 6:20 ! This completely whacked out is new, I am wondering if it’s a side effect that has crept up on me. Has anyone else suffered from this ?
Best wishes to all Jeff

[jeff605Participant]

Hallo all, Well Andy and Dorothy, saw a really pleasant consultant, a Mr.Gabbar, at the Leics Royal yesterday ( after the usual 30 minutes plus to get into the car park – are all hospital car parks like this ? ) He gave me a good interrogation as to how I was feeling and coping, followed by an physical inspection, and pronounced that I was borderline, didn’t urgently need the operation, and really it was up to me how much pain I was in and was I happy to live with it. So I’m going to see what happens over the next couple of months. I intend to do a bit more exercise and activity, which Mr. Gabbar said is the best thing to do. So we will see . At least I will be able to concentrate on getting my daughter- the one with brain damage – settled.
Thanks for the help and advice – he was most impressed with the questions, Dorothy.
Dorothy, I hope you are still recovering ok, take things slowly and try not to overdo things, not easy for those of us who like to get on with it, I know. I really appreciate your help and kindness.
Andy, the consultant did warn me of things to watch for and to take action immediately if I get any signs of them, all to do with spinal cord compression.
All the best to you all, Jeff

[jeff605Participant]

Great news Stanley, long may it last Congrats, Jeff

[jeff605Participant]

Hallo Susie, I hope things are going well, and the side effects are easing up, they must be very draining and ” downing ” As I’ve mentioned before, mine have been very light sofar, and reading of the struggles of others makes me really appreciate this. How you cope with it all on your own I don’t know. I have my three daughters all living nearby ( although the middle one is still in hospital recovering from a serious brainbleed ) and are very supportive, but it’s not the same as having your other half there with you.
Dorothy, thanks for the kind thoughts, they mean a lot. I hope you don’t mind but I have sent you a private message to discuss your operation, I thought you might prefer that rather than doing so in the open forum AS usual, best wishes to all in the struggle against this horrible Myeloma. Jeff

[jeff605Participant]

Hi, Dorothy, How are you following the back op. now? I hope things have settled down a bit and you are more comfortable. I find it very difficult to rest and take things easy, I like to be up and doing. However, looking at the results from the dreaded M.R.I. scan, I think I might have to. The list in the copy of the doctor’s letter was scary, moderately severe cervical stenosis, T11,T12 vertebral collapse, and compression of spinal cord due to angulation, ligamentum flavum thickening ( want some of that to put in my gravy ! ) and facet joint degenerative changes Wow !! Good news no myeloma related lesions. So, have an appointment with the spinal specialist next Tuesday, but from a remark the myeloma consultant made when I last saw her it sounds like an operation is on the cards. This disease seems to specialise in throwing one thing after another at you, doesn’t it? Just got good news that I am in partial remission with p/p at 4, and now this. Ah, well, just get on with it , I suppose.
Dorothy and Susie, Hope you both are feeling better , and best wishes to all, Jeff

[jeff605Participant]

Hi, interesting that you are getting short of breath, I was playing with my old car at the weekend and noticed that I was getting very puffed if I bent down. Are you on Dex ? This causes a very definite cycle with a couple of very down days every week, once I worked out what was causing it I found I could deal with it. Unfortunately I can’t walk very far to help work through it, but I do find keeping gently busy helps. Jeff

[jeff605Participant]

Tom, I’m on my 10th cycle of Revlimid and Dex, which is working well – that’s a dangerous thing to say with Myeloma – and have had very little problems. Mainly tiredness and an unpleasant sweating in the morning which takes me until about 11.30 to 12.00 to recover from, this was very bad initially. So hopefully you will settle down after a short while . I hope so. Best wishes and regards to all Jeff
( one thing I have noticed, I am having a lot of trouble both on my laptop and phone hitting the right keys, not sure if this is an effect from a drug or not )

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