This topic contains 37 replies, has 14 voices, and was last updated by 
penniechapman 11 years, 8 months ago.
Hi Liz and Kev,
Andy broke his arm in February using a chainsaw to cut wood for next winter! He had to have it pinned and then had radiotherapy – at his last xray it was 90per cent healed. They haven't mentioned radiotherapy on his sternum, but then again the xray wasn't presented to the consultant before we left hospital. He has another appointment on tuesday to see how the first week has gone, so hopefully the xray results will be available!
Andy has been better today. He went to see his GP who has given him some encouragement. The pain is being controlled with co-codamol, and I think the dex has kicked in – he's chatty!
When he was first diagnosed 12 years ago, we were told we had about 5 years. Then he had his first stemcell and he was well for another 5 years, in 2008 he had his second transplant after a course of velcade. The velcade really knocked him about – he had a mini stroke (TIA) which was very frightening, but since then he has been in really good form until this last bout. We are still getting our heads round this latest news.
love Pen and Chaps (also known as Andy!)
Hi Pennie & Andy
Your journey quite closely mirrors my own, diagnosed 12 years ago, CVAMP and SCT, 7 years remission then Velcade and 2nd SCT and 3 years remission.
I also will be starting Revlimid & Dex next week and the future seems very uncertain and scary. However I am only 53 and my wife is 42.
We are also endeavoring to change our lifestyle by trying to sell our business in order that we may make best use of the remaining years.
We will follow your progress with interest and share our own over the coming months.
Best Wishes
John & Rita
Dear John and Rita,
Hope you by now have got through week 1 on revlimid and dex – and good luck. We are into week 3. Unfortunately what we thought was a broken / fractured sternum turned out to be a very bad chest infection which caused him so much pain. The consultant had prescribed Oramorph on tuesday but it didn't touch the pain, in fact Andy got worse. On Thurs morning I contacted the haematology dept and they told me to take him straight in. I made the call at 7am, it took till 8.30 to get him out of bed, washed and dressed, by then he felt so bad when he came downstairs I rang an ambulance and he was taken in by them. Turns out the pain was from the chest infection. After 2 days IV antibiotics and fluids he is home and feeling better with no chest pain. What a 'todo'. He was told not to continue with Rev for a week. We see dr again on Tuesday and expect him to re-start the course. He was coping with it, but think the chest infection was already building up and his immune system dipped. We had been on holiday to France and flew home at the end of June, it was after that he became unwell, so perhaps he got a bug from the plane ! not unheard of.
Others of you will be pleased to know that our Att Allowance tome is posted!
On another note we had a fantastic family Olimpix on Saturday 21st July and raised £211 for Myeloma UK! My sister in law has sent some info and photos off and they may well end up on the website, so watch out forthem! The weather was great after all that rain!.
Best wishes to you
Pennie and Andy.
Hello pennie and 'batter boy',
I have read your posts with interest. I can't be of great help to you, but you have both been a help to us.
My partner Colin was diagnosed in October 2011, age 55 and has now following treatment awaiting an SCT sometime in the next month. When he was diagnosed we were so concerned about the prognosis we had read about on the internet that we felt it was absolutely the end. So it is so good to hear that myeloma can be lived with….and you have both dealt with it for so long. How is your quality of life if you don't mind me asking, are you able to do most things?
This mm thing is to be beaten !
Regards
Vicki and Colin x
Hi All
Just coming to the end of my first week of treatment, the first 4 days were okay, day 5 had pamidronate on drip at hospital and that night was running a high temperature all night and almost called the hospital. Next day the temperature was down but the first day off the dex hit me for six and I felt very fatigued and was unable to function at all. Today I feel a little better but still feeling pretty weird and very tired.
Didn't think I'd ever find myself looking forward to dex days.
Must admit I am pretty disappointed to be feeling so bad as we run our own busy seaside Fish & Chip Restaurant and I could be doing without being ill at the moment (very inconvenient)
I was wondering how everyone else is tolerating these powerful drugs and if anyone has found that the doses need reducing so as not to cause too much disturbance to quality of life. (I just need to be able to work 12 hours a day)Just sort of half joking.
For the record I take 25mg Revlimid 3 weeks on 1 week off.
40mg Dex 4 days on 4 days off and again one week off at the end of the month
Omepraxole 20mg same days as Dex
Clexane 40mgs every day
Pamidronate on IV monthly.
Cheers All
John
Hi All
Penny watch out for the Dex as it can hide infections,its no fun if it gets serious.As for AA there has been a big discussion in the new comers section,might be worth a read.
John I am amazed you are working at all,with that combination of drugs,but if need must you always find away,when you are self employed you cannot afford to be sick:-P
Good luck John. Eve
Hi John
I had revlimid last year with dex and cyclophos as induction and now rev alone as maintenance, I worked all through the first lot but it got more difficult as time went on as it has a cumulative effect, and I was so tired i was really glad to stop for the sct! Latterly it has caused great trouble with my guts so I had a 3 week break and if it starts again I'm going to have to have the dose reduced, which is ok apparently, but I'm back to work again, tired of course but it's all ok. Good luck with it.
Love Helen
Hello everyone, Been a bit of a busy couple of weeks and don't know where the time has gone.
Just to straighten things – it's Andy who has MM, not me. He is on 10mg revlimid and 20mg dex – on 21 day cycle. He had the one hiccup with the chest infection which required him to go into hospital,and is now on a week's break.
He gets very tired and his blood pressure has dropped, but he now has sugar in his drinks and doesn't get dressed until mid-morning. He is 'coping' and won't be beaten. We have a wonderful family and neighbours call in to check on him when I am at work. On that note I am going to go freelance – which will be much better. We sent off the Att. Allowance application – having spent two hours on it with the help of my brother and his friend who works for the local authoroity. We have also had a supporting letter from the consultant. I will let you all know how we get on, but don't expect any response before 8 weeks – but if we get it will be back dated to 3rd August.
Andy has always been very positive. His attitude has helped me cope too – it's so difficult seeing those we love go through all the treatments.
Dear Batterboy – do hope you manage to get through these first weeks, your doses are quite high compared to Andy's. I expect you have discussed these with your doctor. We keep a diary and takeit with us to consultations – keeps us focussed and we don't miss telling them anything.
Good luck and love to you all
Pennie and Andy.
Hi Pennie and Andy
It is nice to hear you are sounding a bit more positive.Do not forget any problems with AA appeal,I hate to say it but things are going to get worse before they get better,sometimes the chemo takes so much out of you.
I had to replace white carpets with laminated flooring,I will let you guess why.:-|
The more chemo and infections you have the longer it takes to recover,plus age factor.:-S
Pennnie I know a lot of people on here use a small recording device,they only cost about £25 it helps with remembering the conversation.
On a more personal note,I think you have done the right thing work wise,this time you have together is important,but make sure you leave space for yourself,this is my biggest down fall,I am not very good at doing this,and in turn I get very tired plus,short tempered,it does not help when you are dealing with someone who is changing before your eyes. Eve
I am glad you managed the herculean task of getting that pesky form filled out, Penny!
It sounds as if both of you have a great positive attitude which I am sure will help keep you going.
Eve mentioned the mini recording device lots of us use so we can "listen again" after a consultation to reinforce our memory for what was said, so I thought I'd post a pic of the one I have and a link to the place I got mine.
[img]http://www.gizoo.co.uk/Images/Products/USBDigitalVoiceRecorder/hero.jpg[/img]
http://www.gizoo.co.uk/Products/USBDigitalVoiceRecorder.htm
Small and easy to use, and just needs plugging into a USB port to download and listen to it.
Love
Eliz
XX
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P.S. I just noticed the current model on sale has a 4G memory – mine only has 2G
As well as recording with it, you can use it as a normal memory stick so transfer/save files onto.
Hello everyone, Just thought I would share with you that Andy was successful with the application for attendance allowance! He is to get the higher rate which works out at £309 per month and means I can go down to 4 days work. We can't believe how quickly the decision was made, but have to put it down to the incredible help we had from my brother and his neighbour who is works for the LA and helps people fill in the forms! So do not be disheartened. She asked the most simple questions which brought out things we had not even thought of – like Andy not being able to have a bath because he can't get out, so he needs help. Getting in and out of bed at night for the loo. A letter from GP and consultant helped as did sending a copy of his prescriptions. I am aware that this allowance is only available to those aged 65 and over, but if it does apply to you – get help filling in the form! The decision was made within 3 weeks.
On another note Andy is back on Rev and Dex, the second round of treatment. He is on day three of dex and is chatting for England! so obviously he needs to take it first thing in the morning. We have the next appt in two weeks to monitor him, then hopefully monthly.We hope you all have a peaceful weekend and look forward to reading more from you. Andy and Pennie.
Hi Pennie and Andy
Well done on the "Win" and getting the AA am sure you would prefer it wasn't needed but am pleased you have it.
He he and am sure you will be better if Andy took dex in the morning 😀
Have a great week end (my young bride and i are babysitting on sat cant wait)
Love Tom "Onwards and Upwards" xxxx
Comngratulations on getting that attendance allowance!!
I am sure it will help make things a little easier for you both.
Love
Eliz
XX
X
Hello everyone, and particularly Vicki and Colin – hang on in there. MM can be lived with. When Andy was first diagnosed we were all a bit doom and gloom, but we steadily learned to deal with the monthly blood tests – and the unit was very supportive. When he went in for his first STC they didn't make it sound frightening, taking it step by step so we weren't so scared about it. Of course Andy's attitude has been the thing that has helped so much. He is very positive and practical. We kept life very much as normal, work, holidays, living with it and not being beaten by it. We both wish you well. Now we have joined this site it is really helpful to know how everyone is getting on. What comes through is the sense of humour and fun! I think we should all go and help you Batterboy in your fish and chip shop!!
best wishes to everyone, Pennie and Andy
Dear all, Just thought I would give you update on Andy. He saw consultant today. It has been confirmed that Andy has a broken sternum and fractures to ribs and collar bone – probably all caused from cutting logs in February which also broke his R arm! However, the amazing news is that his paraprotein levels have dropped remarkably. The dr seems to think this could be due to the radiotherapy treatment he had on his arm to help it heal. But whatever it was it is excellent news! He is on week 3 of second round of Rev/Dex and not having too many side effects. He gets very tired and sleeps a lot, but over the last couple of days has felt quite well and we even went and retrieved the logs which caused the initial problem! They are now stacked ready for 2013 burning! It seems this Rev/Dex is having a very positive effect, so to those of you embarking on this treatment we hope this will give you a boost and help you. Best wishes to you all, Pennie and Andy.
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