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Perkymite 11 years, 4 months ago.
Hello Ann and Pete. My name is Clare, and my mum was diagnosed with myeloma in October 2012. She has just finished 6 cycles of CTD, and has been offered a referral for SCT at Barts. Does anybody have any experience of Barts?and is this treatment as terrifying as it sounds? we are all a bit scared..she has responded well to the CTD, with her pp level coming down steadily from 33.5 to 5. any advice is gratefully recieved.. thank you. x
Hello Clare
Sorry to hear about your mom. In a nutshell, my husband Pete aged 57 was diagnosed in April 2012 and returned to work 2 weeks ago! He had 7 months of CDT and then had the stem cell transplant in February 2013.
Yes it was a long road and the 23 days in hospital was not very nice, but eh, he got there!!!! Each patient has their own journey! Pete had a terrible throat, had to go on morphine, could'nt even swallow his own saliva and lost 24lbs in weight. Others suffer from sickness and diahoria plus various other ailments.
Your mom will be fine, she will be in and out of hospital before you know it! We live in Somerset and so know nothing about St Barts, but can only add that the treatment Pete received was second to none.
Why don't you start a new thread and you will get additional advice.
Take care
Ann and Pete
x
Hi Clare, with a good response like your mum has had I think it would be worth having the SCT. I had it over four years ago and felt it consolidated the chemo treatment and gave me a better chance of a good remission. I have been apart from a monthly infusion of primidrinate (bone strengthner), treatment free for over four years and lead a relatively normal life. I take morphine for back and rib pain, this works well, my husband reckons I'm a cheep date as two drinks and I'm buckled. Don't left your mum be put off by the horror stories of a transplant , it's tough but each journey is different and there is lots to help you through the bad bits. I found the recover the worst as it was slow and boring. If I can help let me know. Good luck to you both
Linda
Morning Jan, can't sleep tonight so have been on the site and read your story with interest . Mine is very similar in that I have vertebrae trouble , only two, and trouble with painful ribs . I take oxynorm and that really does help. I had a SCT four and a half years ago after six cycles of treatment and all is well at the moment. It's a tough journey but there are so many people with worse illnesses than this. We have to stay positive and enjoy everything around us. I work in a school office and am lucky to be back at work after a year off. I don't do as much at wrk, home or in terms of sport but I am determined to enjoy what I can.
All the best with your journey and your future health.
Linda
Hello Sandra, I too had shingles during my fight with MM. Not nice as you say. It comes about because your system s low, it's very common in cancer patients apparently.
Hello Ann , have been reading your story with interest. Sorry you've had a rough time. Good news that not too many vertebrae are damaged. I have only two affected but that's enough, also have rib and hip pain for which I take oxynorm (morphine). With regard to support, do you have a group near by? I do, it's a great help. We meet four times a year and discuss all aspects of M M. I also have great support from my haematology team at my local hospital in Perth Scotland. I get an infusion of bone strengthener every month and the team are like friends now. I can and do ask them anything that worries me. I have been in remission for over four years.
Good luck with your future health
Linda
Hi Linda
It's really good to hear from other myeloma patients who have been in remission for a long period of time and who have been able to maintain a good quality of life after undergoing chemotherapy and SCT. It's great news you were able to resume,maintain and enjoy your employment for so many years without any problems with your bone pain. On the positive side, research and developments in myeloma treatment have been able to slowly increase the average life expectancy, offering patients greater hope of living longer with this incurable cancer.
I feel very lucky that my treatment has been able to give me a period of remission to spend more time with my family and enjoy more years together. Although I would like to have more energy and less bone pain to be able to undertake more activities during the day, I have learnt to compromise and accept what my body is capable of undertaking on a day to day basis. Dealing with the complex emotional issues of cancer can be challenging and stressful, but we all try our best to develop coping strategies and enjoy our lives as much as possible.
I hope you are not too tired from being awake during the early hours.
Jan x
Jan x
Hello Linda
Thanks for your message.
How much morphine do you take for your back pain? I have cut down on a lot of my medication since the consultant upped my Thalidomide to two tablets per day, I am starting to feel more like my old self, but I do feel very tired sometimes, like yesterday I just laid on the sofa and slept. As for support I do not know of any around here, I do not even know who to contact for help if I need it, maybe my fault as I did not take in all the information in when I first saw the consultant.
Well done for being in remission for four years, I hope I make it that far, I just want to spend as much time with my family as possible. My husband had cancer last year and we were looking forward to having a nice holiday together this year but it looks like we will have to wait.
Ann
xx
Hi Ann, good to hear that your pain relief has gotten less. I take 20 mgs of OxyContin at night and 15mgs in the morning, I then have 5mgs of breakthrough which I can take at anytime. If I started to need a lot of breakthrough then the GP would up my daily doses. I still get tired easily but nothing like when I was having my treatment.
Glad to hear your husband has come through his cancer. Remind me how long it was since you were diagnosed.
It's a pity your not able for your holiday yet, maybe a wee weekend would suffice until you feel stronger. we had to cancel a special cruise we had planned for our silver wedding anniversary as it landed right in the middle of my treatment. My consultant said I could go had he would hold the stem cell process but I didn't fancy going on holiday bald, tired and with my Hickman line still in so we cancelled it and managed a wee family party instead.
With regards to support I go to a support group in Perth which is great, if you call or email Meyloma UK they would be able to tell you where your nearest group is. If there is not one nearby call Ellen again at myeloma UK she is full of useful information and is very supportive.
How do you get in with thalidomide, I've never had it. All I have to do is have a monthly infusion of bisphosphonate which I I'm fine with. The staff at my clinic are just great and let discuss any worries or concerns.
Will stop wittering on now but if you have any questions I can help with please do ask, happy to listen and help.
Linda
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On 8 May 2013, at 00:26, noreply@myeloma.org.uk wrote:
Dear Lindawinton
ann1955 has posted to a discussion you're monitoring:
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RE: New
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Hello Linda
Thanks for your message.
How much morphine do you take for your back pain? I have cut down on a lot of my medication since the consultant upped my Thalidomide to two tablets per day, I am starting to feel more like my old self, but I do feel very tired sometimes, like yesterday I just laid on the sofa and slept. As for support I do not know of any around here, I do not even know who to contact for help if I need it, maybe my fault as I did not take in all the information in when I first saw the consultant.
Well done for being in remission for four years, I hope I make it that far, I just want to spend as much time with my family as possible. My husband had cancer last year and we were looking forward to having a nice holiday together this year but it looks like we will have to wait.
Ann
xx
Evening Jan,
Thanks for your reply. Have caught up with my sleep now. Made a big mistake at school today and played a bit of netball with the staff and kids, they were short and I didn't want to let them down so I did the centre passes only and have spent the night in a lot of pain. I should know by now not to do such things but when you feel fine you forget about the cancer and think you will be fine. How wrong I am.
What pain killers do you take for your vertebrae. I am currently on 20 mgs of OxyContin at night and 15 mgs in the morning and that usually sees me through. The hardest things to do are around the house, hanging out and bringing in washing is hard pealing potatoes is torture, lifting and pouring pots -anything which involves having my arms outstretched causes me pain.
On the plus side I have so far had a good response to my treatment and long may that last. I was 44when I was diagnosed and my children were 16 and 20. They and my husband are what's kept me going. Megan who is 21 now is due to get married next year and it so special to be here to be part of it all. Our son Martin has just moved into a flat with his girlfriend and again is great to be here to see them happy.
Do you find you have to give in to your tiredness much. I can happily sleep 12 hours then be napping an hour after I've got up. I'm much better if I have something to do like work or socialise.
Look forward to hearing from you.
Linda
How do find your energy
Hello Linda,
You were brave taking part in a netball match! I haven't played netball since primary school, although I remember playing goal attack for many years and thoroughly enjoying the game. My youngest son is almost 21 and he is studying sport and coaching at uni because he wants to become a PE teacher. His main sports are football, hockey, swimming and cricket. Taking him to sports activities since he was five, I've had to learnt a lot about the rules of many sporting activities, but I still can't explain the offside rule in football!
I'm completely unfit since the myeloma. My energy levels have slowly improved since my SCT in September 2010, but they haven't returned to a very good level. Like you, I sleep a good 12 hours per night and become tired very easily. I'm OK if I don't carry out many activities during the day! My consultant gave me two pieces of advice after my SCT, which were to drink as much water as possible during the day and not to lift items over 2lb in weight. I can understand the weight issue because of putting too much strain on the bones, but I also find I cannot lift/move any heavy objects without suffering bone pain. This is why I've avoided vacuuming, food shopping (it's now done online), or carrying wet washing – it goes in the tumble dryer. I've learnt to adapt and unfortunately my hubby has to carry out more household chores since the diagnosis.
I take fentanyl 50 mcg pain patches which last for three days and at least they offer continuous pain relief. I supplement these with tramadol 50 mg tables x 8 per day, which I have managed to reduce to 4 per day. I've tried to reduce the fentanyl on occasions to 25 mcg per day, but it wasn't successful. Fentanyl is apparently much stronger than oxycontin.
I think you are coping really well being able to work full time. How do you cope with any heavy lifting at work such as moving the stationery supplies or getting involved with setting up tables/chairs for events at school?
Jan x
Morning Jan,
I was interested to hear about your pain medication, I like you don't do hoovering or at least not much, I can manage a quick run round the lounge but can't do the whole house or lift the Hoover upstairs because of pain, Mike does a lot for me. I still do shopping but prefer where possible someone to come with me as I can't push,steer a shopping trolley or carry the shopping, if I go myself I have to buy a little at a time and use the basket trolleys usually reserved for the elderly. I often end up doing too much and have to come home for a rest and some backup pain killers.
I will need to stick to my role of referee and not play netball as I am suffering today but hey ho I should have known better.
I only work on Mondays Wednesdays and Fridays which is perfect as I always I'm one day away from a rest. Y work have been very supportive throughout my illness, I had a full year off with six months full pay and six months on half pay. When I return I could only do a few hours per day then gradually over a period of four months built that up to three days. Before being ill I ran the school office on my own working 4 days per week (it just a wee special needs school) but it was full on. When off the school made my job full time but I didn't want that on my return so they allowed me part time. Now I just answer the phones, coordinate meetings, deal with visitors, I don't do anything that requires concentration as the morphine and my lack of confidence don't allow it. Not the same job by any means but I'm happy to be able to be able to lead a semi normal life.
I've heard of the need to drink plenty fluid especially if your kidneys are affected, so far I've not had any kidney problems only bone pain. I can't lift much but I am guilty of doing a little bit more than I should and then pay for it later.
Do you attend a support group of any kind? I do and find it very supportive. I'm off to an info day next Saturday, I've not been before so looking forward to hearing about new medications, trials, and chatting with others in the same boat.
Will go for now, take care
Linda.
Evening Linda
I was diagnosed in Feb this year. I still feel I have a lot to learn. I am going to ask the consultant if I can go on a mini cruise for about 5 days , as I said in my last message after my husband having cancer last year and me this year, it has taken its toll. We both need a break and a 5 day cruise would be nice, just to have some nice time together, even if I may spend it sleeping ha!
I have looked for a support group, they are both about an hour away, I may try and get to one of them.
I get on ok with Thalidomide, but I do notice that my hands are a bit shaky now that it has been upped to two tablets , but I guess that is the least of my worries when you know what is ahead.
Thanks for the offer to contact you if I need any advice
Have a good Evening
Ann
Xx:-)
Hi Ann, good to hear from you,
A wee cruise sounds good. If you both feel well enough you should go for it.its such a benefit to do things that are normal. You may find your not as able to do as much as you may previously have done, but just to be away and spend quality time together I'm sure would be lovely. We had to cancel our 2 week med cruise which we had booked for our 25th wedding anniversary. I had booked it in March for the following Oct but it was just too big a trip, I had just finished by six sessions of chemo and was due to have my cell harvest done and I just didn't feel fit enough. Since recovering we have had some great holidays to Egypt, Tenerife, London, Spain twice, Portugal. We are determined not to let mm rule our lives. That said, the bone pain and the changes we made with regards to what I now can't do is a constant reminder that mm is very much part of our lives .
I'm going to a Myeloma information day next weekend, haven't been to one before so looking forward to hearing what the experts have to say.
How did your family cope with your diagnosis? My children were 20 and 16 at the time and once over the shock and tears were very good and never doubted I would make a good recovery. I'm so thankful to both them and my husband they are what keeps me going. Unfortunately Mike now has to do a lot more round the house but never complains.
It's late now will stop talking and catch up another time.
Enjoy your break.
Linda
Evening Linda
I think I am going to attend the info day in Bournmouth which is next month. As I am not working at present I have plenty of time to sit here and think about everything. I wish that for at least a day I would not have to think about MM. Not only do we have to deal with MM, it is also the bone pain and all that goes with that, I find it takes up every second of your thoughts. Even when I go out I watch where I am walking in case I trip , I wish I could flick a switch so at least I could have a few hours of not thinking about MM, it takes over your life.
You asked me how my family took it……well I guess they took it ok, as I mentioned somewhere in a post before my husband had cancer last year, so I think they just accepted it, I have not told my sons that MM is not curable ( not sure if that is a good thing). Like Mike, my husband has to do a lot more around the house, but he never moans about it, I do feel guilty about it as I normally get on and do things myself, but now I have to ask.
Take care
Ann
xx
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