This topic contains 140 replies, has 26 voices, and was last updated by 
dee4894 11 years, 5 months ago.
Hi David
Funny you should mention the high incidence. I thought. That when I saw several on here, including us from the west country!By the way, took your advice and got out and about in the forest of Dean and Cotswolds. Again not too far from us. We enjoyed it. Getting braver and who knows might gather farther afield…..
Best of wishes and health
Vicki and Colin x
Hi Ann
How are things?
Just read that Pete takes cd every Sat all in one go. As you say everyone's dose is different even though it's the same med. My husband takes his CD for 4 days then a rest for 4 days then starts up again.Only 10 pills at a time though. So I guess they try and treat the individual not just a common treatment for all, so that is encouraging.
We have just been through a load of tests scans etc and now they are adding methadone to the mix, let's see if that gives any interesting side effects hopefully not as bad as dex!!
Your sister's friend hopefully hasn't been diagnosed with MM.?
Hi Vikki and Colin my sister is just moving to the forest of Dean I haven't been there but have been to Deddington in the Cotswolds(?) where she lives now. It is so pretty.
There are all sorts of new trials out there and one at the moment waiting for FDA approval sounds really good so let's hope they all come along and we get MM to be a chronic just like diabetes can live with tha.
Take care LOve Teresa
Hi Teresa
Not too bad, but dreading Tuesday, Pete goes back to the Hermatology Clinic for his first appointment since starting the medication. He will start week 4 of the first cycle this coming Saturday. Also he will hear the results of the MRI, I keep thinking, please don't find anything else!!! Don't really know what to expect. Just a quick question! – I read alot about the side effects of DEX and you mentioned them again in your post, is it the sleeping issue? Pete has had a few side effects, but I must admit he sleeps really well, albeit he has to go to bed early.
Have also noticed over the last couple of weeks, that once Pete takes all his pills on a Saturday, he gets a lift and the pain does ease a little, but as the week progresses, ie tonight and Friday, he starts feeling pain in different zones in his back and ribs (Well it had already started, he is feeling rough tonight.) The discomfort certainly likes travelling around his body!!! We shall have alot of questions to ask on Tuesday!!!
Take care both of you
Best wishes
Love
Ann
My sister's friend is still undergoing tests – very strange that they have not come up with an official diagnosis in all this times, lets hope it is not the dreaded MM.
Ann, write down your questions now. When you get there they will all be forgotten!
Dex affects people differently, myself I could not sleep the night I took it; I would stay up all night watching videos(I use earphones ? so as not to wake the wife), answering or putting questions on this website and/or playing on my computer. I also felt I had more energy for a short burst 24 hours ish.
Best of luck for the appointment.
Kindest regards ? Vasabyte
David
Hi Vicki
Yes another week!! – Cannot believe Pete is only just finishing week 3 of his first cycle – it feels like an eternity already and I do realise that he has got an awful long road ahead! (Colin is on his 7th cycle) – it does get better does'nt it????- I think I know the answer to that one!
One question though, you say Colin is on his 2nd lot of Dex, did'nt he take it from the beginning??. As I posted to Teresa, alot is said about side effects from this drug, but as Pete takes the whole dosage once a week, I am interested to know more.
Pete sees the consultant again on Tuesday (monthly check?) and he gets the results of the MRI as well.(Pete as usual is not saying much about it)- I don't know what to expect. Does Colin have to see his consultant on a regular basis? Pete feels quite rough again tonight, the pain has moved again, it certainly likes to travel!!!
Will let you go, hope you are enjoying this glorious weather! Pity we have to work!
Take care
Love
Ann
x
Hi Teresa,
Cotswolds are picture box lovely. The forest of Dean is more rustic as it was mining community (now long gone). She'll love it. Beautiful here at the moment. The good weather can lift the spirits.
I agree if they could just find that drugs to control this condition, like diabetes that would be great.Col is on day 15 of his cycle and thankfully last day of dex tomorrow. He mainly gets a bit low and wakes up for an hour or so each night when on them. Not bad and he definitely takes it on the chin.
Plenty to enjoy in the FoD, best wishes
Vicki &Colin x
Thank you so much David
As usual, you are so very helpful and thoughtful!
Best wishes
Love
Ann
x
Hi Ann,
Good to hear from you. It is amazing how time flies. On the one hand it seems an age and on the other, a lifetime (even more so for Colin!),
Colin dex cycle is 4 days worth at the beginning of the cycle (20 tablets each day) and then something like day 12 for 4 days (same amounts). Colin sees the consultant once a month and has blood tests each week. David is right by the wat, write the questions down otherwise you'll forget. If you're anything like me I get nervous before the appointments so I need anything to help!
Sorry peters feeling rough. Colin was really out of sorts yesterday and then up with the lark for work today….left before me! Unpredictable for sure. Like all the others not keen on the dex but side effects not bad so far. He does sleep well too.
Enjoying the weather too.remember to look after you too. Although me a fine one talk talk (rubbish at it)!,
Take care and good luck with your appointments
Vicki & Colin x
Hi Ann
Yes Dex affects everyone differently I just wish I had known at the begining of our MM journey what i know now.
The weekly Dex didn't agree with Peter he took too long to recover from it so the 4 days on off are better for him. He also gets very energized and red in the face and very assertive boardering on rude then can't remember anything he has said. Driving is a nightmare as he shouts at everyone, but he trys really hard to keep it together as he only found out how bad he was when the nurse told him a little while ago!! not 8 years ago when we started all this.
Peter also has travelling pain, ribs back hips but this is normal I think?
I am sure they will soon have him on a treatment tailor made just for him and he will have a nice long remmission and by then you will be used to this new life style and just not worry so much there isn't always a reason for everything it just is and forget it and enjoy the day.
Hi Vikki
I am looking forward to seeing the Forest of Dean one day when my sister has moved and settled in I love the Cotswolds Deddington nr Banbury where she is now.
Have a good week Ann and Vikki Take care of yourselves try really hard not too think too far ahead all will work out
Love Teresa
Hi Theresa and Ann,
Fantastic weather today. Not bad for the uk. It's been a really hard day today. Colin finished his steroids yesterday. He slept all last night and for most of today. Got up for about 5hours in total. Ate not too bad but he said he felt totally wiped out and we both had a few tears and I know he was thinking about what he would normally do in this weather;bounding around, giving the garden a good going over etc. I think it upset him and I felt sad for him and for me because it's hard to see. He looked so forlorn today. I've worked my socks off pruning, planting, cutting etc because I can't sit down for long. Not sure where I'm going with this……suppose I'm just worried. 🙁
Hope you guys have had a better time of it. At this moment I wish I could wave magic wand and make things ok. Stopping the negativity now. Positives are cycle 7 nearly finished. Colin and I have a catch phrase 'failure not an option'. As Tom would say onwards and upwards.
Enjoy your weekend all x
Vicki & Colin
Hi Vicki and Teresa
We did'nt have a good day yesterday either!! Pete really felt rough, the pain is still going around his body, each day, different spot!! He is now suffering with chest pains (has got a spray for under his tongue) but has to see a cardiologist next week! I hope to god it is connected to myleoma and not something else!!! He was in bed at 4pm yesterday (on such a beautiful afternoon and bless him, he just loves the sun so much), he looked so grey and was in so much pain – I was so scared!!!
Today he is so much brighter, we had friends round for lunch and he did have a few glasses of wine, every day is so different!!!
Vicki, like you, I did the gardening today, Pete could'nt even attempt it (not that he did it when it was well anyway, always off golfing !!!(LOL).
Teresa – Hope you and Peter have enjoyed your week-end. Pete also gets bad tempered at times, more so now!!
Will post again after Tuesday. Pete's first review after starting medication and MRI results, feel sick even thinking about it, but I appreciate that both of you have been through this so many times.
Take care both of you!
Ann
xx
Ann, very best of luck for Tuesday. Remember to write the questions down!. Colin hasn't been much better today, although we did go to my mums for a short while, which is an improvement. Let's hope he's better tomorrow.
Echo what you say about each day being different, hope it all goes well for you both
Vicki & Colin x
Hi
Best wishes for Tuesday
I hope Colin and Pete have had a better day today but each day different so just accept.
My husband Peter also had pain in the sternum,/chest issues after his SCT and he has been seeing a cardiologist ever since. Just a regurgetation valve problem but they don't want the heart to swell so he is on heart meds and asprin but only a yearly check up so nothing serious to worry about. Just another side efrfect? There are so many, but every little different thing has to be checked out.
It must be gardening season! the warm weather brings us all out. I also was planting out but my son cuts the grass and my husband as sick as he is sat on a chair and filled the pots with earth, that was it then back to the sofa for the rest of the day. So all the little joys are worth enjoying like visiting mum and having friends to lunch.
It is very hard to see someone change so dramatically in front of you and look so sick and old and forlorn as you say but things do get better and letting your feelings burst forth relievs the pressure
Take care
Love Teresa
Hi Vicki, Teresa and all
Pete went for his consultation today. Still confused!! but at least the news was a bit more encouraging. The MRI showed up a mass of myeloma on his spine (we actually saw the scan). This finally confirms the cause of the back and rib pain. The consultant was confident that with radiotherapy (Pete goes back tomorrow for a pre-assessment and treatment will start next week) – that they can relieve the pain. Great news!! I am really impressed that they are moving so quickly They have now introduced a new word to us – 'light chain myleoma'. The consultant was also confident that his chest pains are associated to myeloma and NOT his heart, and so again, another sigh of relief!
I hope you are all ok, best wishes
Take care
Love Ann
xx
Hi Ann & Peter,
Glad all went well today! Thought about you both. I have heard of light chain myeloma. Colins pp level was lower but his light chains were much higher. No one has said what sort of mm that col has but last month the consultant mentioned that he seemed to 'spurt' more light chains than pp's. Don't know what that means in detail.
So glad for you guys. Colin had a dose of radiotherapy before he started his main treatment cycles. They were v good at explaining and gave some meds to stop any potential sickness or upset tummy (he needed neither thankfully), he said he felt very tired for a while after. Onwards and upwards.
Colin is much better today comparatively so let's hope its good for all of us x:-)
Vicki and Colinx
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