This topic contains 22 replies, has 11 voices, and was last updated by 
DaiCro 13 years, 3 months ago.
Dear All,
I am Pat's daughter Jane, she was diagnosed in January with MM and is just completing 4 mth of 6mth CTD treatment. What a gruelling schedule it is for anyone let alone a 78 year old lady who lives alone. I am very proud of her but also so sorry that she like all of you have this horrible condition to live with. Not so long ago she loved walking dancing and playing bowls now she has lost her confidence in her ability to do any activity and in her looks-she has lost some height and has a hunch back. She's had it all, swollen legs, rashes, falls, constipation and exteme fatigue and drowsiness yet continues her treatment religiously-I think she's still got that dogged spirit and fortunately glimmers of that sense of humour so important still show occasionally. This site is wonderful, you are lovely people with stories like me you never expected to live through, its so true how sharing these experiences do help, as Mum says she just thought it was her going through this nightmare.
I suppose my question is Mum finds thalidomide quite a difficult one to take apart from the connexion with its past history in the 50s and 60s she was so familiar with it makes her feel very strange-disorientated and sometimes see things that aren't there!. She has also fallen a few times (not badly and no breaks fortunately) after taking it. She has tried different times from 6pm to about 10pm to find out what suits her best but we wondered if anyone else has any tips. The problem with Mum as well is that she gets anxious and panic attacks so id very reluctant to lie down and sleep and very often sleeps sitting in her chair.-I know we have tried everything including Reiki to prevent her anxiety. And of course she is so drowsy and tired a common complaint I know-how do others cope with this? Sorry to ramble on but this is my first foray onto your site and I have so many things to say-next time will be much shorter. Mum can use the computer but again has lost her concentration for it so I will pass all info on. I know she would actually like to speak to people but will not attend a group. All very best wishes to everyone.
Hello Jane
I took thalidomide as part of the CDT regime I found that if I took it last thing at night and the steriods first thing in the morning I managed to sleep most nights I am afraid constipation seems to be a common theme with any of the treatments I found prunes and figs helped but some times had to resort to movicol which can be given to her by the doctor i also lost my confidence it took me 3or4 months to get that back strange it had never happened to me before, give mum my best wishes
Love Jo
Hi Jane and welcome,
Im a carer for Peter who is currently taking Thalidomide for the second time after break for a transplant and velcade and revlamide. It worked wonderfully the 1st time he was on it as a 1st line treatment along with dex.At that time it was discovered that he had crushed vertebrae too causing the hunched back or kyphosis as it proper name. He was given strong painkillers prior to being given Thalidomide and he was seeing things too, talking to dead people and not making a lot of sense.
Don't worry its most likely not the thalidomide that is causing it, it most probably is the pain killers for her hunch back… Im assuming she is on pain killers. IF not then I am absolutely incorrect. and I apologise for being so forward. Try and get Mum some that are not so strong or take less of them if she can cope with the pain and the things she is seeing should go away. But do not withdraw them without consultation as its dangerous.
Thalidomide is fine as long as your not pregnant!!!!!LOL it does what its meant to do, but some people cannot tolerate it. Best time to take it is late evening when she gets in to bed as it helps to sleep it off and may prevent a fall as it makes you drousy.
Make sure if she is on Dex that is taken 1st thing in the morning. sleeping …. Well Peter is doing nothing but sleep at the moment, anywhere anytime. Its the result of poor blood content due to the Thalid working its wonders. Is your mum on a high dose? perhaps she could get it reduced for a while or take it alternate days? Ask the nurse specialist to find out if its possible. Just because your on this drug does not mean life has to stop as you know it, but for a while its certainly on hold until it gets the disease under control.
Constipation needs medication, don't let it go without something to help as Thalid does bung you up, as does the morphine or pain killers she may be on?
Drop by and let us know how she is, and you too. Carers need a hand too occasionally. Even if its just to cheer you up!
Love MIn
Hello Min
How you can think to write so much in one go is marvellous I am glad to see it looks like the thalid is starting to work for Peter lets hope he gets a good long term result this time 🙂
Love Jo x
Hi Jane,
Welcome to our small but very supportive world. I truly wish you were not here and I hope that your Mum can get through her CDT without too much more side-effects… it does work marvels and when she is though the other side she will know that it was worth it.
As I said, I truly wish you were not here… but as you are and re: your concerns… well… what Min said.:-)
Dai.
Hi Pat and Jane
Min and jo ,s advice is good,just want to add it is important to drink a lot of fluid as you need to clear kidneys,to be honest your mum seems to be doing ever so well,it must be hard living on her own,if i am correct the nurse on this site can put your mum in touch with some one with same condition,ask Ellain ?
Might be worth going to an Info day look on dates to see if any are were you live.Keep in touch, eve
Hello Jo,
It comes from having been a policewoman and writing statements! Old habits die hard.
As for Peter he is sleeping a lot, as eve suggests probably has acid reflux. Feels like sh*** lost loads of weight. Weak as a kitten …. Cant interest him in most food due to the indigestion thing, although he is hungry. He had no adverse side affects apart from hair loss from his last melphalan. On this occasion he has got them all with a vengeance( result being this is like the first time for him) to date his hair is intact!!! cant remember when it falls out but by the time it does he will be really depressed as he hated it the last twice it happened.
I am just so pleased I am no longer working as I would not be able to cope again.
Thanks Min
Hi Min
I have acid reflux it can be awful i take a small dose of omisaprol daily which seem to hold it in check if i do get it srange as it will seem all i want to eat when i get it is heinz tomato soup i seem to be able to tolerate that.
As for hair loss my husband lost his naturally he hated at first but now he is ok with it his brother who is 11 years younger is even balder must run in the family Love to Peter
love Jo x
Hi Jane and Pat welcome to our little world Jane your mum sounds like a real trooper !! Sorry I cant help with the Thalidomide question but constipation is a common side-effect wuth all myeloma treatments I was unable to concentrate on anything for more than a few minutes in the early days but it has improved as time has gone on Take care and I look forward to hearing from you both love Bridget x
Hello Jane your mum and my husband (age 72) seem to be going through the same thing. David had smouldering MM for over a year but in March was told it was active and started chemo. He started cdt in March and is just completing his 4th cycle but we will probably go on to 6 cycles.
I cant seem to manage to start a discussion on this site and wanted to know if anyone is going through the same thing. Its so isolating on your own! Generally he has managed well but on 2 occasions he has had infections and needed antibiotics that is scary. The rest of the time hes not too bad although hes like hes on batteries with dex! He copes with the constipation with movicol which works fine. Has your Mums paraproteins gone down? We found that they went up when he had an infection. Has anyone else found that? Good wishes to you and your Mum in coping with this difficult disease Ann x
I think your mum
Is doing really well. I started on thalidomide in January but was unable to complete the first cycle due to an horrendous skin rash. I also felt fAint so they reduced the dose. I remember the feeling of being in a black hole and very tired. I started a second cycle after the skin rash cleared but had to stop
Again due to nerve damage. In spite of my intolerance to it and only having 1.5 cycles it worked a treat.I would ring your mum's support nurse to report any side effects.
I too live on my own and don't have a particular carer. I was extremely anxious about my diagnosis and my treatment and could not even concentrate enough to cope with taking all the medication. Imhad some counseling at a local cancer support centre and my gp prescribed me mild anti depressants'as I was also going through relationship breakdown. Your mum may not need or want to take anti depressants but i am sure there will be support in her area. She can also talk to
A myeloma uk peer member which I found useful too. As time goes on I have coped better with my treatment but it sounds like your mum is doing pretty well with all the side effects she is experiencing.
All the best to your mum and you.
Wendy
Hi Jane,
Your Mum sounds very like mine who started CTD treatment three years ago when she was 79. She found the first few months quite tough and the thalidomide dose was lowered as it was initially too high and made her very drowsy and confused. I know what you mean about the history as my Mum actually took thalidomide for a while when she was pregnant back in the 1950's! But it does the trick in reducing the paraproteins even on the reduced dose. She took it at night but has never been a very good sleeper, in fact she has taken sleeping tablets for years although she stopped these while on CTD. I agree that it is a difficult regime for an elderly person on their own and I had to help with making a medicine chart and reminding her to drink plenty etc, she ended up having 9 months of treatment. She has been in plateau since it finished and now at 82 is really reasonably healthy with good kidney function and PP under control. It does knock the stuffing out of them though, she is much less active than she was and feels less able to do things but I have managed to get her to go to a day centre a couple of times a week and various other activities, we also have a local hospice who have her on their books and send a visitor to see her each week. Not sure where you are but this might be another way to help your Mum although it sounds like she is doing OK – I agree it is very impressive that they keep on following doctors orders when I am sure I would have given up like a wimp long ago!
Keep in touch, it is good to hear about how things progress and ask away if you have any questions.
All the best to you both,
Jill
Hi, I'm not that familiar with this site since it all changed and not sure if this is the right place to add my post but it is relevant to Thalidomide.
I'm on the Myeloma XI Trial and got "picked" for Thalidomide as part of my chemotherapy before my SCT. I'd been asymptomatic for 4 years but my PP levels had crept up to 59 and I was anaemic along with an MRI showing I had spine damage/thin bones and a few other problems so they decided it was treatment time. So now I'm on my 4th cycle of CDT and not doing too well on it at all. I've had several short stays in hospital since I started and typing this is taking every last bit of energy I have left. I had a very nasty skin rash so they withdrew the cotrimoxazole I was taking. I've had the red face since, but not the lumps. Thalidomide seems to be the thing causing me the problems it seems. I take 100mg at night. This was meant to go to 200mg for cycle 2 but I felt I couldn't tolerate it so I was kept on the same dose. At first I felt like I wasn't here. I woke up one morning and actually thought I'd died which was quite upsetting. My whole body vibrates but this has recently gone to my face mainly. I feel dizzy faint and lifeless – I basically don't have a life any more until my Dex days then it starts over again. I spend the majority of my time crying in bed. Not ideal with a 5yr old and a 2yr old. It's this feeling faint and lifeless thing that's getting to me just now. I'm just not able to funcion. I go for my review every 3 weeks and tell the doctor just how bad things have been for me but he doesn't seem too concerned. I rang the nurse today for my PP result and told her but as it's doing it's job, they just don't seem keen to alter anything.
Has anyone else experienced this on Thalidomide? Does anyone know what my options are with regards to changing treatment? I know that's a question for my doctor next time but I've no idea whatsoever what other treatments there are. Yes, it's doing the job but frankly I don't think I can take any more. You know you've reached breaking point when you start having suicidal thoughts.
If anyone can offer anything on the subject I'd be grateful.
Thanks, Sharon.
Hi Sharon
Hang on in there, first things first, Im sorry your having such a dreadful experience on Thalidomide. It is not a pleasant drug for anyone, and the knowledge that it is being used to fight cancer is mindblowing.
Sharon I do think you need some help from someone who can talk you through this and suggest tommorow you ring the freephone helpline on here and speak to Ellen.
She is a lovely lady who will point you in the right direction for the help you need. Your nurse specialist can also put you in touch with a Macmillan nurse, who can help you deal with the 'dark' feelings your experiencing.
Perfectly understandable feelings but you cannot deal with them on your own, Macmillan nurses are trained to help all concerned to live with this diagnosis and the side effects of the treatment, perhaps she can tell you how to approach your consultant to get a drug holiday for a while. Lots of people find the regime too punishing while dealing with the symptoms of MM too.
I personally think the dugs for the bone damage may be responsible for some of your problems. My husband used to see and talk to dead people when he was put on them.
There are other options for you, but velcade for instance means twice weekly visits to a day ward and wainting around for 'an age' to be given the jab. For some people it is more intolerable than thalidomide.
As you are on a 'trial' I would have thought the 'trail' staff should me monitoring you more frequently and as you are on a trial I believe the option is there to end the trial at any time..
I really dont know the answer but I do know Ellen… on the helpline . I have spoken to her several times when I have been in despair, and met her on an info day and I just know she will do everything she can to help you.
Please give her a call.
I hope very much she can help you out of the dark hole this darned awful disease sends all its sufferers. dont imagine you are alone as there are many people feeling or have felt, just as you do. Help is our there but you have to ask for it. dont be afraid to ask. If we can help you we will and someone on here will be able to to tell you how they felt just as you do now.
Wish I could give you a big hug to make it better:-)
Love MIn
Dear SHARON I was in tears reading your post , how awful to have to put up withose side-effects and even worse nobody is listening to you . You are not being unreasonable to want some quality of life whilst on treatment especially as your family is so young . I think if I were in your shoes I would bluntly refuse to take any more Thalidomide , even if you have to go through all the side-effects again and the effect on your family There must be another drug they can try . I think the most worrying aspect is that neither your doctor or specialist nurse is listening to you and how awful life is for you at the moment Try and get an earlier appointment and lay it all out for them , Ithink sometimes we minimise how bad side-effects are (without realising that is what we are doing) for fear of being seen a wimp , which you most definitely are not! .I hope they take notice of your feelings this time but if not perhaps it may be time to question the suitability of this doctor and consider changing to another hospital , if that is a possibility Please post again and let us know how you are , there are so many people on here happy to support you even if it is just to have a rant , dont be too brave and bottle things up !! I hope life gets better for you very soon lots of love Bridget x
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