Hi Julian. Sorry that you have had to join the Myeloma club.
Everyone seems to react differently but your symptoms sound very familiar to me. It is really tough whilst you are having the treatment, but for me most of the side effects like swollen ankles and puffy face do wear off in time once you finished. Even doing the basics can be quite challenging.
Looking back it seems funny now, but I was advised to put my feet up to help the swelling in my legs. So I sat in the garden reading a paper and even within half an hour got dreadful sun burn. Self inflicted but I was in agony for a month afterwards. I think the drugs make the skin more photosenstive.
There is plenty of advice available from Myeloma UK eg helpline and booklets if you are worried and of course you should hestitate to go back to your consultant or specialist nurse of you have queries, they are the experts.
Good luck on your Myeloma journey.
David S
Hello Graeme
I was diagnosed at 59 years old and am now 18 months post stem cell and feeling better than ever.
Everyone’s experience seems to be different, but for me it was quite a while before the fatigue started to wear off. I was OK pottering around the house, light house work etc but no stamina. From reading other posts and articles it seems to be that the younger and fitter you are to start with the quicker you recover.
Myeloma UK has a buddy system whereby you can speak to another patient who has been through it – I found that chatting with someone else invaluable before making up my mind. There is also the Myeloma UK helpline and the infoguide on SCT was a really good source of information. I would recommend making contact with one of the local support groups if there is one in your area or attending one of the patient information days where you can talk to others who have been through similar treatment or chat with themedical experts in an informal atmosphere.
Good luck and hope all goes well.
David
Hi Bijou
Sorry to hear that you are having a rough time of it and have joined the Myeloma UK club. Hearing about a diagnosis of Myeloma is a shock to everyone. Late diagnosis seems to be one of the common problems with Myeloma, in my case I was in agony for two months and could barely move, but had been prescribed Ibrupofen and Paracetomal for my back pain by my GP. This was before a physiotherapist suggested a blood test which started my Myeloma journey.
There are lots of helpful leaflets and other information on the Myeloma UK website. Also it might be useful to see if there is a local Myeloma support group in your area, it is always good to speak to other patients, it helps to reduce the sense of isolation.
You will find out that Myeloma is very individual depending on all sorts of factors. My advice is to ask your consultant or specialist nurse lots of quesions if you are worried or unsure.
Hope this helps.
David
Hi, sorry to hear that your dad is having problems with the medication. I would certainly agree with Tony that if you are worried then go and ask the experts, that is what they are there for.
I was on 6 cycles of dexi as part of CTD, 4 lots of 20 ( each 2 mg) three times each cycle – I remember eating them with Cheerios for breakfast. The two main side effects for me were fluid retention everywhere, just like Michelin man, and the muscle weakness your dad had, which combined with spinal damage meant i was fairly immobile for several months, I could just about manage 10 or 20 yards.
The muscle wasting seems to be a viscious circle, the less you do the worse it gets. As soon as you are up walking again, thing start to get better. There are some exercises you can do in a bed or a chair but again I think you need to take expert advice in case you do more harm than good.
I started to see an improvement a week or two after I stopped the CTD but if I am honest it was a couple months before I was able to walk any real distance of a mile or two.
Hope this helps and that you start to see some improvement.
David
Hi Mervyn
Hope you are feeling better soon and coping. I don’t recall anyone say that it is easy, but everyone’s experience seems to be different.
I think patience and common sense are important as well as following the advice of the doctors and nurses. I kept a diary when I was in and have several entires of ` pretty tired’ between days 3 and 10. My neutrophils started to come back strongly on day 10 and was home on Day 16. Expect to feel tired for quite a while afterwards.
It can be mentally exhausting as well as physically demanding, so try and think of some nice things to do when you are well again.
All the best
David
Hello Mervyn
Good luck with your stem cell transplant.
I am now 15 months on from mine which I had in Liverpool and am doing well. I took in a radio with headphones,books and crosswords which kept me busy. You will find that the nursing and support staff are in every couple of hours day and night to keep an eye on things so you won’t get bored. I found that it was very frustrating being hooked up constantly to the drip line trolley especially when showering and going to the loo in a hurry, the wheels always seemed to be pointing the wrong way! I was up and dressed every day but on a couple of days half way through you are likely to feel pretty tired.
The advice to suck ice lollies when having the melphalan worked well for me. Try and do everything you are told by the nursing staff since they know best, particularly where eating and drinking are concerned, often easier said than done. Contrary to what the papers often say I found the food and care to be first class under the circumstances. I was lucky in having a relatively straightforward time and was back home after 16 days – expect to feel tired for a few months afterwards. I was up and about soon afterwards at home but found that the mind was quite often more willing than the body.
Hope this helps. Good luck
David
Hello Emma
It is difficult enough having to deal with myeloma without having to worry about work as well. My experience ( again from a civil service background and as both a manager and employee) has been quite different.Part time working, working from home, flexible hours – nothing has been too much trouble for my employer who has been extremely supportive throughout. Employers need to be flexible when dealing with cases of ill health to distinguish between the genuine and those who play the system. I would suggest that you contact someone senior in HR ( SCS or one grade lower) to explain your situation and discuss your options.This may avoid dealing with rule book based middle managers. They will know what can be done within the system, eg career break, job share etc. It sounds as though the OHA report supports your case. If your are a member of a trade union they can also provide lots of advice and a local rep can attend meetings with you. It may be obvious but it is always a good idea to a record of meetings, emails, discussions and calls in case you need them in the future. Managers have alot of discretion, it is up to them how they choose to exercise it. If you are off work, it also helps to keep in touch with your line manager every few weeks, but they should be doing this anyway.
Hope this helps.
David
Good luck with the treatment.
David
Hello Jan and All
My Myeloma journey and experiences which started two ears ago have been very similar to those reports in the posts above. Perhaps it helps us to know that we are not alone in facing these challenges.
When ones mobility has been severely reduced for several months, unable to get out bed, get dressed etc then any gains are worthwhile and forever appreciated. It was a good 6 -9 months post diagnosis before I gained any sort of mobility ie getting in and out of the car for example.
I would just add that my consultant said that my back muscles would gradually compensate for the spinal damage and for this reason I am never sure just how much exercise we should be doing to make the back muscles work and strengthen. Physiotherapy might be one option but this has never been offered to me post diagnosis. I have found that trying to keep busy around the house and garden, combined with a good dose of common sense have had beneficial effects. Also walking with the aid of Nordic poles has helped the road to recovery.
Hope this helps.
David
Hi
Sorry to hear that your dad had joined the Myeloma club.
His problems sound similar to my experience,but they do say everyone is different. My Myeloma when initially diagnosed was at a pp of 54, this caused spinal lesions and compression at the T7 vertebra causing a loss of about 4 inches in my height. I was in alot of pain ( agony ) for the first six months caused by what I think they called a plasmacytosis tumour pressing on the spinal cord. I was more or less in a wheelchair and couldn’t walk. This was picked up by an MRI scan. 10 sessions of radiotheraphy and the CTD gradually reduced the pain. Two years on and much improved, just returned from holiday in Dublin which at one point I thought I would never do except in my wildest dreams, so there is hope.
Hoping your dad has a speedy return to good health.
David
Hi Leanne
Sorry to hear that your mum is having a rough time at the moment with the treatment. They do say that everyone is different and if in any doubt to consult the experts.
I had a lot of fluid retention whilst on the CTD regime, swollen ankles,legs, tummy and a puffy face. Coincidentally I had my eyesight tested for new reading glasses and the optician said that I had high pressure in my eyeballs. I checked this out with my consultant who said that it was most likely the CTD and once I had finished the course of tablets things did settle down fairly quickly, but it was some months before I felt all the fluid had gone from my system. Although it was difficult for me, due to spinal damage caused by the myeloma, I found that walking did help to get my body back going again.
Hope this helps and that your mum starts to feel better.
David
Hi Val
This is my first post on the Discussion Forum since my diagnosis of Myeloma in March 2013.
I was pretty much wheelchair-bound and immobile for much of 2013 due to a cytoplasma in the T7/T8 spinal vertebra. Like your husband, I had radiotheraphy (at Clatterbridge) which helped reduced the pain and then on to CTD. As you may know there are various treatment plans for CTD, I was on the most aggresive which meant taking 20 dexi tablets on Days 1-4 and Days 12-15 along with a host of other medication.
Lots of side effects including swollen feet, ankles, face and abdomen. This did eventually disappear but in my case it was over 12 months, exercise eg walking seemed to help. The other main side effect was muscle weakness and by the end of Cycle 6 I was pretty worn out. That all said, my pp level came down from a starting level of 54 to about 2.8. I had a Stem Cell Transplant 11 months ago and am in remission.
During the course of all this I lost about 4 inches in height and put the beer belly down to the fact that my insides have been squashed. Am now able to walk a couple of miles and do most jobs around the house with common sense not to do to much. I am very grateful for the treatment and improved quality of life.
Hope this helps.
David
