[tomParticipant]

Hi Pete

Well you know how good we are and how good YOUR Forum is, so use it and us for advice to have a moan and or a winge as am sure that you and Ann will want to use it to the max, dont worry about saying/asking a Q you think might be silly (av done it loads and loads Lol)

Good Luck for Tues as for Full X Ray I had no bone damage? hoping you are same.

I know what you say about not doing your hobby I aint been fishing since i started treatment in 09 🙁 but hey ho am fit and well.

Keep fit and keep well and good luck in your journey with MM

Tom "Onwards and Upwards"

[OutdoorsPaulParticipant]

Hi Pete/Ann
I was diagnosed with Myeloma last Aug which started with back pain (which i still get).I am 40 so one of the younger end on the site.Just completed 4 cycles of PADS and getting ready for Stem cell transplant (SCT)in early June.If you have any questions about your Myeloma ask you're medical team,and of course this site and the people who are on it are great and always supportive and happy to share experiences.
take care paul

[foxy555Participant]

Hi Paul

Really appreciate your reply, can I ask if your back pain is upper or lower and do you experience rib pain?
Regards

Pete

[foxy555Participant]

Hi Debs, thank you, how are you doing at the moment? Still feel this illness is 'wide open'. No one seems to have the same symptons!! They still donot know if Pete's upper back pain is connected to the illness. Can you help with my worries??

Kind regards and best wishes

Ann
xx

[foxy555Participant]

Hi Ted, thanks for your reply. May I ask a stupid question? Docs said to Pete that if myeloma has'nt spread to bones, no treatment necessary!! Why can't they 'nip it in the bud now' -why wait for it too spread and how does it develope, we are both so confused, we have read all the literature etc etc Just don't understand?

Kind regards

Ann and Pete
x

[AliParticipant]

Hi Ann and Pete

Im sorry you have to join the club, but im sure you will find lots of answers on this site.

My mum was diagnosed Nov 2011 at 57. The shock and worry is still very fresh and raw, but day by day it seems to be getting easier. Her initial treatment was really not as bad as we expected (it makes me laugh when I say we, its not like ive been taking the pills – though as a family we all share the emotional side of it) next step is a stem cell transplant.

I have felt the need to find out every detail about this awful disease, where mum prefers to know as little as possible and says whatever it takes…

Take care, both of you

Alison x

[OutdoorsPaulParticipant]

Hi Pete
Glad you now active on the web site.When first diagnosed I had a tumor in lower neck/top of back area which was treated with radiotherapy so far successfully. medical team were worried it would cause compression on spinal cord and loose mobility.As i say this has not happened and it has been treated.
MM also causes bone damage to which I have several vertebrae which have been partly nibbled away and this is in the upper area of my back.I am fortunate at the moment that paracetamol takes the niggling pain away.
Dont have much Rib pain thoe have a few which are weaker,I have found that when near time for my monthly Zometa injection (bone strengthening)there is a slight increase in bone aches.
I do find that when cooking which i enjoy and outdoor activities i can get back ache which annoys the hell out of me!
hope that helps
cheers Paul

[scott9Participant]

Hi Pete

Just saw this thread of comments. Your situation mirrors mine. I was 57 when I got this in 2010. Like you I had bad back pain and had to stop playing golf for 5 months. I was diagnosed in Sept 2010. I'm now on maintenance therapy and going OK so don't worry as there is still a lot of life to live.

Stay strong

Scott

[tishwishParticipant]

Hi
My husband was diagnosed on 31st May last year ( my birthday ) after been ill for 5 months. He first became ill in January with severe back pain, after many visits to the doctors with the pain and other problems, chest infections, pnuemonia, pleurisy, but he was always told that he had a muscle spasm, he was finally sent for an xray. This showed he had a crushed vertebrea, the doctor then referred him to a consultant neurologist. He was not happy with the xray and said it was inconclusive but he put him into a back brace, which he then wore for the next 4 months.Am mri was done and again this showed an inconclusive result and the consultant said that he would admit him to hospital for investigations and if the vertebrea was crushed he would have a procedure called a verboplasty. Peter entered hospital on the 23rd May to have surgery the next day, this was cancelled each day until it finally happened on the Thursday and Peter had 3 crushed verebrea's cemented. Immediately the doctor was concerned with the softness of Peter's bones in his spinal area. Unbe-known to us they were already exploring the myeloma, as it had shown up in a blood test whcih was taken on his admission day to hospital.We were finally given the myeloma diagnosis on Monday 31st May. No blood test had ever been taken by his own GP.Peter then became extremely ill on the Tuesday, his body was suffering terribly from a calcium overdose, from the bone degrading, this also affected his kidneys and put him into renal failure.This was a very difficult time for us as a family, Peter didnt even recognise his own daughter and son.
The next day a consultant haematologist from the Oncology unit came and spoke to us about the disease and his treatment for myeloma started immediatly and Peter was then transferred to a specialist hospital.He has now been through a CDT course and a SCT and is making a good recovery.

Trish xxx

[teds31Participant]

Hi Ann and Pete, Sorry I didnt reply been a bit off colour this last week, not to do with MM. The reason they dont treat Smoldering MM is that the treatments can be pretty bad and if there is no or not much degeneration then ypou could go for years (as I have) without much of a problem. There has been some research into giving treatment before the actual symptoms occur but I think they mostly say leave it until some thing happens. I go every 3months to clinic and several times I have complained of pain and they always give me a scan and so far nothing has shown ,the last time (3months ago) I had a full skeliton X-ray, so I think they are probably doing the best thing,I think the best way to go is to keep up regular appointments and ask questions and complain if you have any symptoms at
all.All the best and keep us posted. Ted.

[andygParticipant]

Hiya Ann and Pete.
Welcome to the forum, none of us want to be here, but it's a friendly, supportive and informative forum.
Sorry for the delay in welcoming you but I was in hospital last week and have only just recovered.
I was diagnosed with mm oct 2011 after approx. 18 months of back trouble.
If you have any questions ask away, either of you, you'll almost certainly receive an answer or an educated guess. If you really get stuck there's the myeloma helpline.
Take care – both of you
Andy

[LyndaParticipant]

Hi Ann
A very warm late welcome to you and to Pete.It must have been quite a shock to you both and you probably feel like the rug has been pulled out from under your feet.There is an awful lot to take in but take each day at a time. As others say this is the best site to go on with so much support. You will have lots of new things to take in but you do gradually get into a routine with the medications and appointments.
My hubbie (also called Pete) was diagnosed November 2011 after suffering with lower back pain and also pain just under ribs.Has been on CTD for a few months but now on Velcade with the hope of SCT in a couple of months.
Good luck with the x-rays and appointments. Both of you keep your chins up.
At least you guys now know you are not on your own with this and the people on this site are brilliant and supportive.
Love Lyndax

[foxy555Participant]

Hi all

Got skeletal xray results today. Has confirmed small holes in the bones, commence CTD on Thursday. We did'nt really take alot in at the consultation, but know that this is in the form of 3 types of tablets – plus aspirin to avoid clotting!!! – taken daily for about six months. Doctor also said I would need to spend an hour a month on a drip to strengthen the bones. All I want at the moment is relief from the pain in my back and a good night's sleep. After 6 months they mentioned a stem cell transplant. Alot to take in today, but will read back at all your postings and perhaps all the terminology will make more sense. Not a nice day, but thanks to you all – this site has been so good for us both. Will keep in touch, let you know how the 'pill popping' is going.

Take care all of you.

Best wishes

Pete

xx

[HelenParticipant]

Hi Pete
Good luck with all the tablets, there is lots on here about the tablets, spreadsheets, yoghurt to mix them with, and of course when you are wide awake at 3am because of the dexamethasone, there is often someone here to talk to. 🙂
Love
Helen

[tomParticipant]

Hi Pete

Well am sorry you had to start your treatment 🙁 to start with I will say listen to your body? yes it was only a couple of days ago you could run burn the candle at both ends and lift more than the other bloke at work BUT to be honest your treatment will take it out of you (but you will get through it) rest when your body tells you and do the bits when you can.
I started my CDT in Feb 2009 SCT in December 2009 and am now drug free and in remission, I did it by rolling with the punches (so to speak)

Its a Long Haul the road to remission but trust me its well worth the trip.
Keep strong and stay fit 😎

Tom "Onwards and Upwards" x

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