Mothas replied to the topic Post – PAD did your bone pain return? in the forum Treatment 11 years, 6 months ago
Always heading vertically Tom, always.
Mothas replied to the topic Post – PAD did your bone pain return? in the forum Treatment 11 years, 6 months ago
@Eva
thanks Eva, I suspect (and fingers crossed) that coming off dex is the thing behind this. I've also started taking a bit more strenuous exercise. I'll have a clearer idea tomorrow after seeing the onc.
Thanks to everyone who's replied it has eased some of the anxiety.
t.
Mothas replied to the topic Post – PAD did your bone pain return? in the forum Treatment 11 years, 6 months ago
Thanks Michele most helpful and congrats on your remission. Looking good and long may it continue.
Mothas replied to the topic Post – PAD did your bone pain return? in the forum Treatment 11 years, 6 months ago
Megan thanks for the reply that's really helpful.
My pain, well it's more discomfort than anything and is less than prior to the treatment, I was just getting that horrible paranoia that it meant that PAD might not have worked.
I think also that Dex can mask pain and discomfort and when you get off it, the discomfort can re-emerge.
thanks…[Read more]
Mothas started the topic Post – PAD did your bone pain return?. in the forum Treatment 11 years, 6 months ago
I finished my PAD treatment 2 or 3 weeks back, and since then have noticed the creeping return of bone discomfort in a few places.
During treatment my bone pain pretty much disappeared, has anyone else experienced something similar?
I'm seeing my consultant tomorrow and it looks like I'll need some scans to have a look to see what's going…[Read more]
Mothas replied to the topic Keith Hindmarch in the forum End of Life and Grief 11 years, 6 months ago
Thank you for passing on this sad news.
My thoughts are with his family, friends and loved ones.
I never met Keith but he always contributed thoughtful, supportive, informative posts to the community and will be missed.
Tom
Mothas replied to the topic Velcade side effects? in the forum Side-effects 11 years, 6 months ago
Hi Paul, I was on PAD so I had adriamycin in place of cyclophos.
I had a bit of a dry nose on occasion with velcade and when I blew it I sometimes snotted out a bit of blood.
I also got eye infections.
I would talk to one of the specialists or nurses on this site.
Mothas replied to the topic Lightly chained to the Roller Coaster Ride in the forum General 11 years, 6 months ago
Helen, the relapse sucks.
Of course you're all over the place.
As far as treatment is concerned I think the consensus in the UK is to go in hard and early as possible. I'm showing nothing in my bloods, urine or BM but they're basically giving me the full bazooka.
big hug from me too.
tom
Mothas replied to the topic Anxiety in the forum Side-effects 11 years, 6 months ago
Mandy can only agree with the others. You've already shown immense strength and fortitude to get as far as you have done. Most people in their lives never have to face the kinds of things that we as MM patients do.
Hang in there
all my best
tom
Mothas replied to the topic Keith Hindmarch in the forum General 11 years, 6 months ago
ellen thanks for the update, our thoughts are with keith and sue as they face this most difficult of times.
Mothas replied to the topic Stem Cell transplant, given go-ahead in the forum Treatment 11 years, 6 months ago
Dai, yes I remember the posts, stickies at the top would make it so much easier to find stuff. Setting up the stickies should be easy enough. Digging out all the old posts might be a bit of a job, but if everyone responsible for the original posts took on the job for theirs it wouldn't take long.
Mothas replied to the topic Stem Cell transplant, given go-ahead in the forum Treatment 11 years, 6 months ago
Charlotte thanks for the reply, glad to hear all is well with you and fingers crossed it remains so for many years to come.
Mothas replied to the topic Signposts and Sounding Boards in the forum General 11 years, 6 months ago
An important post.
If we aren't going to push for change, nobody will do it for us. In particular speedier access to new drugs that are coming on line. Our illness is time critical as we all know.
Mothas replied to the topic Stem Cell transplant, given go-ahead in the forum Treatment 11 years, 6 months ago
Thanks Tom, I'm heading vertically as suggested 🙂
Mothas replied to the topic Stem Cell transplant, given go-ahead in the forum Treatment 11 years, 6 months ago
I want to thank everyone for taking the time to respond.
I'm definitely going for it. I realise that there are other options but on weight of evidence I think this gives me the best opportunity for sticking around for a bit longer!
If anyone out there has had SCT at UCLH I'd really appreciate some insights into what it was like. I've been…[Read more]
Mothas started the topic Stem Cell transplant, given go-ahead. in the forum Treatment 11 years, 6 months ago
Went to see my specialist at UCLH today expecting to be given another round of PAD but they've decided to let me go straight to the SCT. Gulp. Scared and excited all at the same time.
They couldn't see any benefit of giving me a 4th cycle of PAD. I've not shown any myeloma in my bloods, urine nor bone marrow. I had an MRI scan in Feb after my…[Read more]
Mothas replied to the topic My Velcade Journey in the forum Treatment 11 years, 6 months ago
Hi Joanne,
yup apparently it can make your eyes itchy and when you rub them you can transfer bacteria to them. I got two styes, one in each eye. At least it was symmetrical!
I had antibiotics to clear them up which sort of worked although I've still got a little bit of an infection.
They didn't stop the treatment though.
Mothas replied to the topic One year on (A long year) in the forum Newcomers 11 years, 6 months ago
Thanks for that Paul, I'm hoping to have my SCT within a couple of months.
Mothas replied to the topic Zometa 'flu' in the forum Side-effects 11 years, 6 months ago
Dai sorry to hear you're having a rough old time of it.
I read up on Zometa when I heard I was having it, and the flu symptoms are listed.
My experience of the staff who have given me the infusions is the same as yours though, very few seem aware of it. I think it's a fairly common side effect.
Mothas replied to the topic Zometa 'flu' in the forum Side-effects 11 years, 6 months ago
Thanks to everyone who has replied to the thread.
I've had around 12 infusions of zometa now and only had 'flu' after the first.
Interesting to see people's different infusion regimes, mine is once a month and will be for 2 years.
thanks to all.
tom