Hi Jacqui,
Welcome to the site, as others have said you will get some very good advice from people on this site and whatever problem you have they will always be there to help and support you.
Gill x
Hi Sue,
I am sorry you are still suffering after three years this seems an awfully long time. I haven't found out what irritates me yet, I have been keeping a food diary but it is difficult as my stomach is so sore all the time. I wanted to cut out solid food for a few days and see if I was any better but the consultant said I need to put on weight as I lost 3kg in 2 weeks and I had been eating.
I do hope that your results are good news, but in some ways you want them to find something so at least you know that they can make things better.
Good luck on June 5th I will be thinking of you.
Gill x
Hi Eva, Dai and Helen,
Thank you all for you replies, Eva I too had bad diarrhoea and sickness and was in hospital for a month. I came out on the Thursday and was back in for another week on the Friday. I am still being sick and on antisickness tablets although it is now only 3-4 times a week so I am getting there. Like your hospital Helen my hospital doesn't do the neutropaenic diet either. I can only eat some food and this is changing all the time what I can eat today I may not be able to eat tomorrow.
I have decided to try a dairy free diet to see if I am lactose intolerant this is going to be difficult because most of what I have been eating includes dairy.
I am like you Eva, I am only just being able to concentrate on reading and even watching television. I am trying to push myself to walk everyday and do the cooking and chores around the house and I am improving every day but I get very shaky.
Hopefully we will all get well very soon. I cannot wait to have a holiday I had to cancel a cruise last year but my husband has promised me the best holiday as soon as I am well enough.
Thank you so much it is reassuring to know that you are so supportive.
love Gill
Hi Jim,
I agree it is such a shock to find yourself with this dreadful disease but there is hope. I too am recieving treatment at The Christie and was selected for CTD on th X1 trial. The main thing that affected me was the steroids, at the end of my fourth cycle I could not even walk upstairs. My face was so bloated I looked like Moonface out of the Faraway Tree lol. Fortunately the fourth cycle was my last and I have just had my STC harvest. I wish you luck
Gill
Hi Paul,
I have worked all the way through I haven't taken any time off but I have a business to run and staff who have holidays and sickness and school holidays lol. I was also quite lucky as I was being monitored and although I had to start treatment straight away I had minimal bone damage. I am having a week away in October, I can't decide on Cornwall or Edinburgh at the moment, I am thinking Cornwall may be the better options as there is too much walking in city holidays.
I was told it was the dex making my muscles weak, they do seem to be a bit better at the moment and I can make the stairs a bit quicker. I don't get time for exercise in the week with working full time and cooking the evening meal and weekends are always the worst times for me I am not fit for anything on Sundays or Mondays so no chance for walking which I love.
I can put up with all the side effects as long as the treatment works. I have been told that I will be in hospital 3-4 weeks for the SCT but I don't know any more than that. I will be in The Christie in Manchester.
I haven't been too bad with the dexattitude till this week when I am concious that I have been a bit snappy and trying hard to control it.
Good luck with the treatment and return to work.
Gill
Hi Paul,
I hope your treatment is going well and you are started on your 2nd cycle now. Don't worry about not knowing much about this we are all on a learning curve, well I know I am.
I am not sure what type of myeloma I have no one has ever said, although I think it may be Heavy chains as they always talk about the paraprotein levels but i must ask at my next apt. I had mgus then smouldering mm for many years with my pp levels of 9 which I think is a percentage because they said they start treatment at 10%. Unfortunately things changed in between my yearly checkup but it was picked up by my GP and I started treatment in July, I am now on my 4th cycle of treatment on the Myeloma 11 trial I got CDT, my doctor wants to push me to the full 6 cycles which I have worked out finishes on November 11. Going for the SCT but not sure what happens after this treatment. Side effects seem to change all the time, the worst thing for me is the swelling from the steroids and the sore mouth. One day I will have a rash then it will disappear and I will get very swollen legs, they will go down and I will get something else it is so weird but I can put up with all the side effects as long as the end justifys all the problems. The only constant thing is the heavy legs, going upstairs is getting to be a slog, I used to run upstairs now it takes forever.
Good luck with your treatment I notice you said exercise makes you feel better, I must try that. I am still working full time and my office is on the first floor and I am up and downstairs all the time so I guess this is some sort of exercise lol.
Gill
Hi Sally,
Sorry to hear about your dad, hopefully you can help him get through this. I hope my own experience can help you, I had MGUS for a long time before needing treatment which I started 6 weeks ago. I am 60 and work full time which I have continued to do as I have my own business. I have found that since starting treatment I get good days and bad days my bad days seem to be after chemo so Sat Sun and Mon are bad days for me I feel sick and tired but by Tuesday I am OK and on Wednesday, thursday and Friday I fel better than I have felt for years. I find it relatively easy to cope and carry on as normal but as I am only just finishing my second cycle things could change. My only problem at the moment is that my ankles are swelling up, but I will discuss this on Friday when I see the consultant.
I am fortunate as my husband is very supportive if a little over protective and my son lives at home and is a wonderful help too so I have lots of support if I need it.
I think the main problem will be his tiredness so just making sure he is comfortable and can rest when he wants to may be all you need to do at this time. If your dad is like me and feels worse at weekends he may not want people visiting. It is a question of seeing how the treatment affects him. They say to write a diary to see if there is a pattern it makes it easier to plan things.
I agree with Eve you really need to get your mum assessed and as you say he is reluctant to leave her she is after all his wife and he will remember her as she was. It may be that she needs medication or some sort of therapy which could help them both.
I hope things go well for your dad. It is nice that you are thinking about him.
Gill
Hi Ted,
Welcome to the forum, I have only recently joined myself but was in the same position as yourself. I was diagnosed 17 years ago and was having regular checkups at the hospital and like you always felt such a fraud when there were so many sick people in the clinic. Like you I had lots of infections and pains in my ribs and back but while my paraprotein levels went up and down they always stayed below the level requiring treatment. This year however, things changed and I just started to feel so tired and the pain was worse so I went to the GP who did some blood tests and within two days I was back at the hospital being told that it was time to have treatment. I am just finishing my second cycle of treatment and some days I feel better than I have in years and am begining to wonder if I should have had the treatment sooner.
It may be that you may never need to have treatment as smouldering myeloma doesn't necessarily go on to full myeloma.
Good luck and hopefully you can avoid the treatment.
Gill
Hi Lara,
Welcome to the site, I hope by now your father is feeling much better. I am in my second cycle of treatment of CDT so probably the same as your father. I found that the first week was the worst, I think it is our bodies just getting used to the onslaught of all the drugs. The first week we have everything the chemo, steroids and the thalidamide plus all the other drugs and the Zometra (biphosponates drip) that made me ill for a couple of days. I was given anti-sickness tablets to take on chemo days and the day after and they do help, I have also got anti-sickness tablets to take any time I need them so he needs to make sure he has these. I think he will find that he will have good days and bad days. I have found that I feel bad on a Sunday and Monday after I take the chemo on Friday but then I am OK. In fact 4 1/2 weeks into treatment and I will say when I have my good days I feel better than I have for years, my bone pain and tiredness have decreased and I can think clearer. I do get some problems with my eyes not focusing properly, I think that is the steroids but I can cope with that. I have a second Zometra drip and felt fine afterwards, they did say that it would only be the first that makes you ill and they were right.
I hope this helps put your mind at rest, he will start to feel better soon and he will get to know when his good and bad days are and he will be able to plan his days accordingly. I know that I do not arrange meetings at work on Mondays or try and do important jobs, I save those for the rest of the week.
Keep us informed of his progress and don't worry too much he is having the best treatment.
Gill
Hi peggy,
I am so glad you are coping with your medication, as someone else said it is better to be able to control your medication with tablets than having to attend for treatment twice a week. Like you I have just started on the trial but I got the cheap one!! I am just finishing my first cycle and go back on Friday, I find the worst time is for three days after chemo I feel awful but then seem to come round, so by Tuesday I am feeling good, the only real problem for me is food doesn't taste the same and I am constantly nibbling to take away the taste in my mouth (not good for the figure). Glad you have got the hang of injecting yourself, it is better when you can do it yourself.
Keep us posted on how you are doing it is good to hear how other people are it makes you feel less isolated.
Gill
Hi Scott and Dai,
It is good news, you are heading in the right direction and if a full remission is possible that is fantastic news. I have lived with this for many years with no treatment but getting lots of infections, bone pain and tiredness my pp was always around 9 and my pcs were 10% so I lived with it. I cannot imagine ever getting to pp of 0, I am just on my third week of chemo and so far coping OK, I just hope that I have the same strength and humour as you seem to have.
Good luck to you both and Scott do look at cruises because you will still be tired and you can relax a lot in very beautiful surroundings and still see lots of places it is also very romantic I spent my silver wedding on board it was wonderful.
Gill x
Hi Gill,
That is fantastic news, I am sure all the tears are the built up emotions of the past few weeks and the news sinking in but things will get easier. We have to remember we are on the journey now to remission and it will have its ups and downs but we will get there judging by the postings on this site.
I think the tiredness is the worst part, I find some mornings very difficult to get going but I have a business to run and staff to consider so I have to make myself move, more often than not I come round around mid morning but am finding it hard going. I have had to reduce what I do as I cannot think straight sometimes when I get the pain in my head. I have just bought a tens machine I am going to have a play with it tonight I will let you know if it works.
Take good care of yourself
Gill x
Hi Dai,
I hope you got the good news yesterday and are looking a little less like a pin cushion.
Scott I hope you got good news too, I had a wonderful cruise last year to the Far East and I always said I wouldn't do a cruise but we really enjoyed it we saw so many wonderful places and the food on the ship was amazing. I am sure tha you and your wife will enjoy it, I had booked another round the Greek Islands and Turkey in October but I have had to cancel it because of the treament. One tip make sure you get an outside cabin.
Gill
Hi Gillian
Great news about getting out of hospital, its a pity about your plans for the future with the house. I think you just need to take it one day at a time as I am sure that like me every day is different at the moment, some days I feel fine and other days I feel really sick and lethargic other days I get a lot of pain. So sit back and let your sister pamper you. My family including brother and sisters have been wonderful and I am sure yours will be too.
I agree with Bridget keep on keeping on, I will keep on keeping on as long as I can although sometimes it can be difficult I wont let it beat me.
Clara, thanks for you the advice I was taking what they gave me and it didn't work so I e-mailed my myeloma nurse for advice but she didn't reply so I saw my GP. She has said that it is the painkillers causing it because they have codine in, she advised me to take a lower dose on a regular basis I was just taking them now and again and she gave me lactulose and I must say I think it has worked. I think I will try to do without the painkillers if I can and try some other pain relief method. Anyone any ideas.
Gill x
You can be asymptomatic for years I was asymptomatic for 17 years with fluctuating pp levels and was regually monitored all this time. I did get a lot more infections than most people and some pain but I was OK. Unfortunately after all this time the myeloma has kicked in and I have had to start treatment. But there is hope that you may never need treatment and I think I would hold out until you really need it.
Good luck
Gill
