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
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 Paul,
I've not heard of this pace treatment but hope it goes well for you and you can then move on to the next stage. Hope you and your family have a great weekend, weather super. Keep those thoughts positive. Remember mind over matter can work. 🙂
You have been so positive so far and remember there will always be other options I am sure of it!!
Vicki and Colin
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 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 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
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 and Peter
Just wondering how it's going. Colin is on day 11 of cycle 7,second lot of dexamethasone. So far so good…..
Ann I read your last post. I was chuffed that you said I was positive. That's what I try to be, but how hard is that sometimes!!!.still my thoughts and prayers are the same each night. Cure for all and Colin to beat this condition into submission. Hope you are both doing well and keep up the positive thoughts. Mind over matter x:-)
Hi pilgrim,
My partner Colin was diagnosed last october 2011 with mm. It's a real shame you've had no support from your Gp, colins has been brilliant from the start, however once the consultant is in place they are reluctant to offer advice but will listen and be supporting, or should be!
I'm always hesitant to say what is significant or not as I am not a medic, however colins mm seems to be indicated more by light chains than pp. For example his light chains started at 31000, but his pp at 'only' 17. The consultants we see have not gone into the detail of pp vs bence jones, but at the last appointment mentioned that colins Bj was more of an indicator. Not sure if that's good or bad!. His figures are now down to 1.2 for pp and 1300 for light chains.
It's really important to know what you're dealing with as I believe time is always of the essence,early diagnosis and therefore early treatment. Not wanting to tell granny how to suck eggs but although entirely right that you're angry you need to be focussed to get all the information you need; write all of the questions that you want answers to in a formal letter maybe? Are you seeing a consultant? If so they are best. Sorry this might not be much help but best of luck. I'm full of questions every time we go, its the only way. Knowledge is power 😀
Vicki & Colin
Hi Antoinette,
🙁
I believe the standard phrase is welcome to the forum!. My partner Collin who is 55 was diagnosed last October and it was a real bolt out of the blue. I'm sorry that you have been diagnosed with mm. Scared I can understand!!!!. I'm scared for Colin and spend each day worrying. However on a more positive note. When we received all the information about the medication etc and the info about the SCT we were really scared and ovewhelmed. But Colin was determined to do it and we have faced it together- scared but know it's an option for getting better.there have been some difficult time but he is now on cycle 7 and the numbers have all come down thank goodness. the SCT date we don't know yet.there are loads of examples on the forum of people who have had the SCT and are doing very well 🙂
Try not to look too far ahead, tackle each bit in small chunks. Easy for me to say I know. Otherwise it's too hard. Do you think a nurse/counsellor would help for you to talk to?, the best thing is to remember there are lots and lots of new drugs coming on line and different treatments. Also don't read loads of websites. I did that for Colin for months and I've stopped because it scared me witless! This site and forum is great because you can share concerns, thoughts and experiences.
I don't know if the pps would come down naturally.
Take care
Vicki &Colin x
Hi ann and Peter,
Sorry to hear Peter is feeling so rough and you ann in a different way. This forum has helped me loads too (and Colin) as I share all the tit bits and information spotted! That said the mm is still there. I do sympathise with you Ann because there are times when that helpless lonely feeling can wash over you-usually when things are not goin so well!
There will be good days and when they come they are special and you can feel on cloud nine. We went through a spell where we did nothing but focus on mm, Colin was too poorly and shattered!. So was I, with the worry. Then things got a bit better, but it takes some time. We ventured out for a couple of hours for a meal(6pm till 8pm) so that if col felt tired (and he did)we could go home. Then socialising with friends mainly at our home so that if Colin needed a sleep we could work around it. This will come, but I can tell you its wasn't easy, still isn't and still feels very abnormal. Your anxiety and Peter being poorly is similar to Colin but it's very hard to deal with for both of you.
Re the pain. Colin had a pain in his rib, which was there for a while, turned out to be nothing. However colins back low down was very painful. At one point he could hardly walk and fell down a couple of times. That was very upsetting. We were referred to a pain specialist in palliative care. That freaked me out because I thought they only dealt with people who were not going to make it, so I cried there as well!. Anyway it was the best thing that ever happened, they eventually found a combination of drugs that worked. Zomorph tablet twice a day, pregabalin tablet twice a day, paracetamol (8),and morphine oral solution when needed. He does not always need the paracetamol or oral solution but the rest has real led worked for hi. You might want to ask your doctor about that. Also check out if any fractures have occurred, apparently very common and easy to do with this condition.
Try to keep your chin up, this is a very difficult time for you both.a bubble that none of us want to be in. Keep in touch. Try to find something to relax you Ann. I found that baking worked for me. Think I've made every cake, tart and crumble in my cookery books.! A glass of wine is good too. X keep in touch.
Vicki & Colin
Hi dai
My partner Colin was diagnosed in October 2011 and is on cycle 7 of cyclophosphamide dexamethasone and revlimid. His pps have come down from 17 to 1.2 so far and light chains down from 31000 to 1300!. Like everyone Colin gets some good and bad days with dexamethasone. Some random nightmares, some interrupted sleep and more emotional rather than shouting but all the same still finds it difficult.
As his partner I find it very hard some time as I feel helpless and what to make it go away but grateful he's responded so far!
I just wanted to say how inspiring I thought your post was, for me and Colin. It's right what you say, valuing each day and fighting to get this mm thing into submission. I admire your strength and courage. Your words will be a comfort to Gail,me and many others! 🙂
Keep well
Vicki and Colin x
Andy
Good luck with the bmb. When Colin had his first one the nurse held his hand (so you could try that).The second time though it was ok,ish….:-|
We hope you get some joy with your results as it's about time you guys Wight eh condition and we supporters beat this damn things into submission 🙂
Best wishes Vicki and Colin
Hi there,
Sorry you've had to experience this in your family. It is hard but have faith in the medication and the medical teams. They do a great job. The dexamethasone aren't popular. My pattern colin has just finished a 4 day block and he's very relieved, the side effects have made him feel a bit spaced out this time, and flushed in the face. I hope your dads treatment works well and wish him a speedy recovery to normal health
Vicki and Colin x
Hi Ann and Peter
First of all I hope your bone scan went ok today…with regard to the pain Ann, Colin is on some other tablets for his bad back (not connected to mm, this was what prompted a blood test for inflammation! (some inflammation it turned out to be!), so it's hard to say what pain he's in mm related. Colin sleeps a lot but we're not sure if it's the mm or side effects.
With regard to appetite Colin goes in cycles of eating well and then not eating much for a short while. As long as Peter could eat a bit I think that's ok for a while. I get worried if I think col hasn't eaten enough but I have tried to relax a bit if there is the odd day when it's not as good as I'd like (this is where the diary comes in handy so that we can look back at similar times int eh last cycle or two! What about milky drinks, Horlivka, oval tine. Colin also had a spell where he enjoyed a bottle of guiness (better than nothing!)
Re the toilet issue prunes on a regular basis and some fruit in syrup, try that. The consultant also gave Colin some powder sachets (he tells me they taste horrible).Colin has also had terrible hiccups. With regard to the bone protection Colin takes 4 tablets each night even after the 21 day cycle has finished. They are called sodium clodronate (clasteon 400mg).
With regard to the treatments as members have said, it's an individual condition so the treatment must vary a bit!
Sorry you had to cancel your holiday – 12 months ago on 3rd may we were in mexico for two weeks (how life can catch you unawares!). We are too scared to go anywhere before Colin has his SCT as he has had a couple of rigours like outdoors Paul had, that unnerved us bit feel a bit more confident now we know what it is. Good luck to you guys if you can get a holiday. We love to travel too.
I know Peter will look poorly, Colin does sometimes and I hate it, but remember it's the drugs doing their good work to beat MM. Keep your chins up, this is only a blip and all will come good. This Mm keeps you on your toes. For example when I went to work this morning Colin said he felt awful. Then I phoned later in the morning and he felt much better and went to work for a good part of the day 🙂 Just don't know where you are with it.
Take care
Vicki and Colin x
