Hi Ellen, and thanks for the email and apologies for late response. Andy did call the GP and he was of the view that as the boys had already been here and Andy had not shown any symptoms then there was no need for him to take any antibiotics.
It’s always so difficult to know when to avoid contact with friends and family. Andy has been on lenolidomide for 2 years now and is doing so well we just get on with life as normal.
I’m glad we have this forum. Thank you.
Hi Margaret, my husband Andy was diagnosed 16 years ago with myeloma. 4 years ago he was put on lenolidomide and steroids after a relapse. He got cramp in his hands and just worked them more. Very unfortunately he developed diverticulitis and was rushed into hospital for a colostomy. All treatment for myeloma was stopped and he recovered well, albeit with his ‘stan bag’. Last summer he had another relapse of the disease and is now on lenolidomide 5mg only and is doing really well. He has a monthly infusion of zolodronic acid. He’s 76 and keeps himself fit with regular walking. He does have neuropathy in his feet so has to be careful when getting into a shower.
The consultant suggests that he could be on this treatment long term. Since Andy was diagnosed the research into myeloma has been remarkable and each time he’s relapsed there seems to be some new treatment. Well done MUK.
Pennie
Hello everyone – I have just been catching up on news from everyone. Good news for you Tom! Great!
Well – from us here – Andy has had a rocky few months. He didn't get to the end of his 4th cycle because he was taken into hospital with diverticulitis in October – he had to have an emergency colostomy – so now has ' stoma stan' attached. He is coping well, but a bitter blow after going through the summer. But, all is not that bad! He continued to have monthly blood checks and last week the consultant informed us that there were NO paraproteins and that he doesn't need to go back onto treatment. This hopefully means that he can have a stoma reversal later this year. The diverticulitis was not linked to treatment and was just a very unlucky coincidence.
We were also told about some new treatments that may be available and expect to be discussing everything with the consultant when we go back in 2 months!
Good luck to everyone –
Pennie and Andy.
Hi Nettie – how interesting to read your story! I read it out to Andy and he says the calcium tablets have really helped – in two days! So definitely mention it to your consultant. The week he had off treatment went quite well and managed to keep up his walking and got back into cooking breakfast! Do hope everyone can take heart. Good luck to you.
love Pennie and Andy
Hello everyone. Just thought I would bring you up to date with Andy's news. He is on cycle 4 of rev / dex. and the last month has been calm. He had a couple of days when his temperature went up to 38.4 and we had to go to hospital, but after constant watch over 6 hours and iv antibiotics they sent him home on each occasion. Today he saw the consultant who is pleased with his progress. She has given him some calcium tablets to chew because he has been getting cramp in his hands. I hope this news will keep those of you on this regime confidence in the results.
Best wishes,
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.
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
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.
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.
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.
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!)
Dear Dai and TMC – I welcome your views. My brother – who has prostate cancer – has posted forms to me and told me his neighbour can help filling them all out because that is her job! He has advised that we should get a letter from the consultant, which will make the claim easier to get through the system. Andy has felt quite well today – he cooked supper and made one of his super salads – he won't be beaten, and as I take my lead from him, I won't either!. We realise it is such early days in his treatment and that this will be no easy journey.
Thank you for such thoughful responses.
Love Pennie and Andy
Dear Eve, You are quite right of course! Before yesterday it never crossed either of our minds to see if we could get help from the State – We always considered we would have to look after ourselves. I think it's a generation thing – don't rely on anyone else!
Thank you for your candid message. I am on to it!
Pennie
Hi Vicky and Colin,
Thankyou for the encouraging news on revlimid. We think Andy broke his sternum last week mowing the lawn so he has been in quite a lot of pain. An xray was taken yesterday, although I have no idea what treatment can be given! I am very lucky, he never complains, I just notice the pain twitch, particularly getting out of the chair. But today he walked up and did some shopping to save me stopping on the way home to buy supper! I have been on the Govt website and it seems we may qualify for Attendance Allowance, so I shall download the information. We were told yesterday if the Revlimid works we can expect 2 years, if not, it's plan B and back to other treatments. I thought I could work through this, but after today I know I need to be home more. My employer gave me a big hug this morning which completely broke me up. Then I had to go and get some work done. I am a solicitor so I need to be focussed.
Our consultant has been great, very clear thinking with no 'faff'. We both like that!
Good luck to you both on your myeloma journey – it's a funny old disease!
love Pen and Andy.
Thank you Tom. I know I am going to find this discussion forum of benefit, and I've only been at it 2 days! We have dealt with the last 12 years, "in house". Andy keeps quiet with his worries, not wanting to be a burden. I just want to keep him safe. what a rollercoaster! We are fortunately blessed with wonderful family and friends who are always at the end of the phone. What I am now finding helpful is hearing how others in the same position are coping.
As you say – onwards and upwards! We are both very much glass half full.
love Pennie
