KeithH17 started the topic Info-Day Newcastle. in the forum General 13 years, 1 month ago
Hi Guys,interested to know who's going to the Newcastle Info-Day?
I'll be there doing one of the patient experience talks which should be fun
Had to pass on last year's event as I had relapsed and was back on the treatment treadmill.
I see there are a few of you out there complaining of aches and pains,well you can add me to that list.
I ache…[Read more]
KeithH17 replied to the topic FAILED SCT I THINK!!!! in the forum Treatment 13 years, 3 months ago
Hi Kay,sorry to hear your PP's are on the rise after SCT.
I had my second SCT in Aug 2011 and my PP's at the last count 2wks ago were 2.9 although like you I ache in most places.
Shoulders,neck,upper and lower back,in particular my right hip area is very stiff and aches most of the time but I guess that's MM for you.
I do hope your scan is ok…[Read more]
KeithH17 replied to the topic The future looks Great for us….(N.I.C.E. permitting !) in the forum General 13 years, 3 months ago
Yes this is very interesting stuff.
When I hear things like 7-10 years or more survival it's music to my ears.
I guess after 4yrs and 2 transplants I see myself as still only halfway down the road and then there's always more treatments coming along so who really knows,future advances could even stretch it to 15-20yrs.
So here's to a very…[Read more]
KeithH17 replied to the topic Chest Infection in the forum Side-effects 13 years, 4 months ago
Thank's Min,David and Dai for your posts.
I must admit Dai your experience seems to be a mirror image of my own.
I also have a facial itch,in particular around my neck.
If I had known that by having both Jabs at the same time there could be a risk of this happening I would never have gone through with it.
I am now going into the sixth week and…[Read more]
KeithH17 started the topic Chest Infection. in the forum Side-effects 13 years, 4 months ago
Hi guys,for the last 4,weeks I have had Flu like symptoms which have eased off a little but I still have this rasping cough.
I saw the Hospital doctor and he gave me some antibiotics but that was only for the infection but the real problem was down to a virus.
My wife has also been down with it but her immune system is obviously alot better than…[Read more]
KeithH17 replied to the topic WELL THE DEVIL IS BACK in the forum Treatment 13 years, 5 months ago
Hi Jo I've only just seen your post and very sorry to hear of your relapse.
As you say 2yrs 8mths is'nt at all a bad remission,mine was 4mths less.
Still it is disappointing when you find yourself back to square one.
Like me I know you will face up to the ogre head on and once again beat it into submission.
Take care Jo and do keep us up…[Read more]
KeithH17 replied to the topic Itchy Scalp/face/neck in the forum Side-effects 13 years, 5 months ago
Hi Debs and thanx for your reply.
This is really getting me down at the moment.
I can't stop scratching particulary at night when in bed.
Sue think's she's on a water bed going up and down LOL.
I've tried all sorts of creams and was given Chlorphenamine tablets at my last consultation but my skin is alive as if it was crawling with ants.
At…[Read more]
KeithH17 replied to the topic New and need advice on Myeloma XI in the forum Newcomers 13 years, 5 months ago
Hi Jim and good luck with your treatment.
Whatever you do don't become complacent where MM is concerned as it has a habit of coming back to bite you.
I was diagnosed in Nov 2007 had my first sct in May 2008 and now 3 months post 2nd transplant.
I had VAD the first time of which I had 4 cycles and Velcade 2nd time of which there were 8 cycles in…[Read more]
KeithH17 replied to the topic bad news 🙁 in the forum General 13 years, 5 months ago
Hello Gina,I echo what's already been said with regards to your mum.
Have you asked for a second opinion?
Saying that there is nothing more they can do must be the hardest thing to have to accept and it may be worth seeking further advice?
Maybe there is'nt anything that can be done but it's worth a try.
Take care and my prayers are with you…[Read more]
KeithH17 replied to the topic Painful Bones in the forum Side-effects 13 years, 5 months ago
Hi Debs can you tell me what's mean't by "very good partial remission" and how the Hospital can decide between that and complete remission?
Is it because your PP's are still showing albeit at a low level,mine are 2.00 g/l and still falling.
I did make Zero after my first sct and they stayed that way for 2yrs.
In other words is the criteria for…[Read more]
KeithH17 started the topic 3 Months Post SCT. in the forum Related conditions 13 years, 5 months ago
Hello eveyone,had my latest check-up on Thursday and all is well.
PP's are down from 2.55 g/l to 2.00 gl and the rest of the bloods are also fine and going to plan,my next check will be Jan 2012.
The only problem I have is itchy skin which I've been given Chlorphenamine tablets which I'll take along with the various creams and lotions I'm using…[Read more]
KeithH17 replied to the topic "Subcute" in the forum General 13 years, 5 months ago
Hi John pleased to hear that Cecilia managed to get her Velcade via the Subcute route.
My veins collapse very easily and have always been a problem,and that's when they manage to find them.
During my recent treatment I ended up with phlebetic areas on my right arm where the veins had simply given up and it's very painful.
This way of…[Read more]
KeithH17 replied to the topic London Infoday in the forum General 13 years, 6 months ago
Hi Debs hope you enjoy the London info meeting and that you learn alot from it.
I went to it in 2008 after my first sct and stayed a couple of nights at the White House Hotel which is just around the corner from the RCOP where the meeting was being held.
My passion is Photography and I took some shots around London but it rained most of the time…[Read more]
KeithH17 started the topic Qutenza (PN relief)?. in the forum General 13 years, 6 months ago
Thought I'd post this for all PN sufferers.
I read it on the health page of the "Daily Mail" on 16th Oct.
It states that Qutenza which is a chemical derived from Chilli paste and is given as a patch on the skin has been used successfully to treat the pain caused by Neuropathy.
It has a high capsaicin content which stimulates the nerves and…[Read more]
KeithH17 replied to the topic Itchy Scalp/face/neck in the forum Side-effects 13 years, 6 months ago
Hi Debs and thank's for your reply.
Was your transplant an allo because I've never heard of GVHD been an issue with Auto sct's?
I had a very similar experience after my first sct and it cleared up after about 5wks.
Maybe it could be a reaction to blood and platelet transfusions, these being foreign bodies but I don't honestly know.
Take care…[Read more]
KeithH17 replied to the topic Itchy Scalp/face/neck in the forum Side-effects 13 years, 6 months ago
As a footnote to the above post I also have very itchy/dry eyes.
Has anyone else heard of this?
Keith.
KeithH17 started the topic Itchy Scalp/face/neck. in the forum Side-effects 13 years, 6 months ago
This is another note on the itch debate.
I am post 8wks sct and started to itch around the neck which has now spread to my face and scalp.
I remember something similar after my first sct 3yrs ago which also affected my back,shoulders and chest in other words allover and lasted for around 5wks.
It's driving me absolutely mad and keeps me awake…[Read more]
KeithH17 replied to the topic Peter in the forum General 13 years, 7 months ago
Dearest Min,I've only just read your post and I'm so sorry.
I just don't know what to say other than my thoughts are with you.
God Bless you…Keith.
KeithH17 replied to the topic Swollen Arm in the forum Side-effects 13 years, 7 months ago
Thank-you for your replies,I had a Hickman line for my first sct with no problems putting in but lots of difficulties getting blood samples out of it and then it became infected towards the end and had to be cut out.
They always have trouble getting blood samples out of me,one problem being MM makes the blood thicken which does'nt help…[Read more]
KeithH17 started the topic Swollen Arm. in the forum Side-effects 13 years, 7 months ago
Hi everybody,7,weeks post sct and doing ok apart from my right arm which is swollen due to the Melphalan infusion.
The right wrist has a lump which is scar tissue and there are 4 other lumps along the inside of my arm all of which feel quite sore to touch.
I asked the doctor about this and he said the Melphalan must have leaked out and burnt the…[Read more]