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hello,
very new to forums and never heard of myeloma until last Monday, what a huge shock.
hubby has been suffering with back and chest pain for a very long time, GP treated him for gout ,
Anyway, he has several fractures of his spine and last Sunday his sternum fractured and that’s when we ended up in A&E and the ball got rolling.
Due to start VTD treatment on Friday although has had a 4 day course of steroids.
We had the CT scans send to Cardiff and Stanmore, and unfortunately Cardiff cant help with any repair but we are still waiting on Stanmore, this has devastated him, as he is very “misshaped! and stooped and finds difficulty walking,cant lie down and in great pain ,.
this from a man who has worked all his life (62) outdoors, can anyone offer any moral support or tips.
he has been measured for a back brace (will this help )
Also has anyone come across a “sternum” that has fractured.
we are keeping positive, but would love a hand to hold over the fractures
Kind regards
Ann
My husband was diagnosed on march the 1 st after a MRI scan showed a break in his l3 vertabre which led to blood test which led to diagnosis .started vtd treatment on march the 3rd and what a difference these drugs and the morphine tablets he is now on have made he is walking now and now can put his own shoes and socks on again ( unable to do this since November) he has now finished his vtd and tomorrow we go in to the hospital for his stem cell collection ready for transplant end of June/July . I must say he has had a new MRI done and the consultant said no treatment is needed for the break . Is it the complete rest he has had since November or is it the vtd treatment I honestly do not know I am no consultant but I only witnessed the less pain he now shows on his face and the amount of morphine he now takes was taking 16/18 per day now on about 6 on a bad day hang in there stay positive it’s the best way to be ! My husband is 52 and generally a fit person who has worked on the building industry since leaving school hope the vtd treatment is as good for your husband sending the bestest whiches to you both x
Hello,
thank you so much for the post and the encouragement, I have printed your reply and will take into hospital to show him tomorrow this will really give him a boost.
Thank you so much, for taking the time to care I will sleep a little better tonight.
Hope you have a successful day tomorrow, and to you also the very best of wishes.
Thank you again
Ann x
Thank you Ann hope once your husband start with vtd you and he see a difference and he has some comfort it’s a tough journey (as I’m told) but together like us you will get through it hope you can rest and sleep tonight and stay positive behind every good man is a very strong woman and you are strong and you will cope and together you will be stronger x Annmarie x
Thank you for your encouragement, and yes we woman are very strong when we get the “bit between our teeth “.
Hope you had a good day yesterday, your 1st email really bucked hubby up, the shoes and socks made him laugh and he said that will be his target also, little steps that will get us through. It will be a tough journey and we will like you get through it together.
thanks and best wishes again, please could you keep us up to speed on your progress if you don’t mind.
positive thoughts
Ann x
Hi Ann , long and tough day testerday
collection of stem cells but very successful they managed to get enough for 2 transplants so that was good to hear but unknown to me he doesn’t say much due to the injections for the whole week b/4 he did suffer lower back pain , flu symptoms and fatigue but apparently it’s a good sign as it means the body is suppose to be like that ready for the collection process now it’s a matter of when he has the transplant but now ATM no drugs just relax and get over what’s happened to his body the last few months ready for the next stage good luck to you both hope treatment goes well remain positive ask me anything you want I don’t mind at all x Annmarie
hi, my husband has just been diagnosed 3 days ago, after suffering increasing back pain since January. Just in that awful period waiting for the ball to start rolling. Would welcome any support or advice please, I am so scared, can’t eat or sleep.
Hello,
my husband was diagnosed on the 22nd May, after his sternum fractured and he was admitted to A&E, he already had a “unexplained spinal fracture ” that our GP was treating with strong painkillers.
Once the ball got rolling ie ct scan bone marrow biopsy the team have acted very quickly.
Hubby is 62 normally very fit and active, he has lost height and has a stoop and strange body posture (he says he looks like a hobbit ).
Last weekend started 4 days worth of steroids, and his starting his chemo tomorrow on a treatment called VTD or is it VDT.
On Friday he had a spinal brace fitted and WOW what a difference his head if off his chest he can breathe better and feels more normal. They have his pain under control (still in hospital) .
He is now very positive and I am as well, we know the situation but as a complete novice to myeloma, never heard of it before 22nd, I contacted the Myeloma phone line and ONLY read the facts on the Myeloma uk.
Two lovely ladies contacted me by the forum and gave me great strength to “eat and sleep “, once you get over the shock and anger it is a relief (hubbys words ) to know what is wrong with you, get it treated and get on with it.
The myeloma “gang” all seem very positive, very welcoming and very helpful, my advice is ring the help line, they where just what I needed, sent out information and understood.
we are just at the start of this journey, like you, so will wish you all the best wishes, positive thoughts and the advise from the forum ladies was stay strong, it is a tough road that we will travel together.
Hope this may have helped.
kindest regards
Ann x
hy derbeyshirelass. i agree with your husband i feel like a hobbit too lol would love to be more uptight is the spinal brace removable ?? annlynn
Hello,
The spinal brace in Terry’s case is only removed when he is in bed.
it was made for him at the hospital, it is like a turtle shell around his front and back ,from just under the armpit area to his hips.(hard plastic type ) a head rest at the back with 2 steel type rods that fit at the front that then go up to a chin rest that keeps his head up.
We saw the consultant today who had not seen him in his “Iron man outfit” and he was well impressed with how his posture had improved while in the brace. But more importantly it has made My “Hobbit ” feel very much more normal.
terry had his 1st chemo today and keeps telling the Myeloma cells, its their turn for a good kicking, see how they like it.!!!!!!!!!
Hope this helps, good luck
kind regards
Ann
sounds good love anything that helps keep strong hang on in both of you kick cancer back xxxannlynn
Hi derbyshirelass, you are in my neck of the woods (Yorkshire)…thank you for your kind positive words, we have got our first appointment on 16th June, so hopefully things will get moving after that and we won’t feel so isolated as we do now….too much thinking is not a good thing is it?
best wishes to you and your husband, please keep in touch.
Hello,
Born and bred in Derbyshire but moved to Carmarthenshire Wales 13 years ago and run a smallholding.
Good news on your appointment, please keep in touch, I agree this Myeloma at first makes you feel very isolated no one has heard of it and you think why me/us with this rare nasty little beasty, But when you comes to terms with it ( and it is still early days for us and you,) and get all the info and stuff from your consultant or the myeloma info line who posted us details in order as and when you want them ie “newly diagnosed”. We came to accept that we don’t want it but we have it, so lets give it a run for its money, and see how it likes to be on the receiving end of some powerful drugs and treatments. ( silly I know but it works for us ).
saw terry in hospital this afternoon, and so far so good, no side effects at all from the chemo yesterday, still eating like a horse. roast pork lunch, and cheese and biscuits for pudding.
He will start with the thalidomide tonight and high dose steroids in the morning so fingers crossed.
Try and keep busy and not to much thinking only positive thoughts, as it wont be long before the ball gets rolling and the fight back begins and as our consultant said it is treatable and you can get a good many years that are good years and new treatments and clinical trails are always coming along .
so the best wishes and the very best of GOOD LUCK for next week, only 10 days to go.
kind regards
Ann x
Hello Ann, Thank you so much for replying, it really does mean so much. My husbands pain is sort of under control, but his mobility is very bad, has not been downstairs for 4 days, as he feels too wobbly to tackle our very steep narrow stairs.
He finds it almost impossible to sit down in comfort, so he either stands with a stick, perches, or lays down, I do hope this improves for him when his treatment begins. I must contact the hospital in the morning as I think I will need an ambulance to get him to his appointment, there is no way he will be able to get into my car, and certainly don’t want to start pushing and pulling on the already fragile bones!
His name is Steve by the way, and he is 59. He is from a large family, eldest of six, his parents are still going strong too! I have an amazing network of friends, so we have a lot of lovely supportive people around us.
Ironically we were both thinking of retiring next year, then WHAM…..best laid plans eh? But like you say we don’t want it, but we have it, so it is what it is!
Well, it is 11.40pm, guess I will go to bed and try and get some rest.
Hugs to you and yours.
Julia
x
Hello Julia,
Sorry for the delay, wild weather here in west wales and we lost the internet ( not that rare ).
Hope Steve is feeling a little better now that the pain is under control.For the 1st time in months terry described his pain as MILD when nurses asked him today, he has at last got a really effective pain management plan in place and he isn’t topping up with Oramof.
This myeloma is a strange beast, Terry cant lie down that is one of the reasons he is still in Hospital because they have the right beds, the consultants have been unable to get a MRI scan yet because of this problem, but are doing a great job with getting on with it anyway. I am sure that once Steve starts his treatment you will both feel better and see rapid improvements.
Terry is 62 and his parents are still going strong also next week the are celebrating their 70th wedding anniversary, we also have amazing friends who ring and offer support it means a great deal at times like this, because it can seem a very lonely place to be. Life is very strange with both of you thinking of retiring next year, this WHAM will give you the push you need to say YES we will do it when Steve is well on the road to recovery because if one thing that this WHAM shows/tells us is life is for living and lets do it and enjoy it and not worry about the what ifs, because Myeloma is hell of a wake up call that nobody sees coming. When Terrys sternum fractured on the 21st May, we had just accepted an offer on our smallholding as we wanted to have a last shot at running a small farm while we were both young enough (I wont say fit enough because terry has not been fit for a long while.) So we have pulled the plug on the sale , and have come to terms with what we have is more than enough work as I am finding now that its down to just me, so when Terry comes home we can really enjoy what we have and like you and Steve take things a bit easier and enjoy life, it might not be the life we had planned, but heck plans change and there is still plenty that we can all enjoy.
Terry had 2nd chemo treatment today , so every one pulling all the stops out and we remain positive.
Love and hugs to you both, and you will find it easier to rest when you get the ball rolling and the treatment starts, please keep in touch.
love Ann x
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