This topic contains 22 replies, has 11 voices, and was last updated by 
DaiCro 12 years, 9 months ago.
Thank you Min and Bridget for your replies. I really appreciate it. I gave Ellen a call today and explained how I felt. She suggested I bring forward my next appointment with the doctor and discuss other options regarding treatment. I do feel like I'm being weak but then again why be a martyr and suffer? I'm also terrified that if I do go down a different treatment route, it might be worse. Sometimes better the devil you know. At least I know this is doing it's job, despite making me spend 90% of my time in bed wishing I'd never started on it. I have to get them to do something though because I just don't think I can go on like this much longer. I never expected it to be easy but not this bad. I expected a bit of sickness, tiredness etc. As it is, I don't go out the house really (unless a Dex day) and I feel I have no quality of life at the moment.
So thank you. You've made me take the first step. I'm waiting for a call from the Clinical Trial nurse now so I can bring my next appointment forward. I will let you know how I get on.
Sharon.
Hi Sharon
You should never have got to this position on the trials,my husband is on myeloma X1 trials CTD.When you go in for blood they ask you how you are,you have to tell them the truth,and ask to see your myeloma nurse who should be there when you see consultant ring her up.
Yes you are having a bad time,and trying to look after two kids plus your home,something has to give!!!!what support do you have!!!relatives friends,even a social worker.Open up and let people help you.Money wise you should be entitled to some help,this could take some of the strain of day to day living.i hope this is of some help.
you can come off trials anytime you want,but i think trials offer you your best chance,It is not easy and things can get on top of you,don,t think you are a wimp,be honest with your team,they are there to get you the best treatment,every one reacts different to the drugs.It will get better and feel that there is light at the end of the tunnel.
Keep posting you have people on here who understand what you are going through and can help you. best wishers Eve
Brilliant Sharon,
Pleased to hear you now have a plan. Do you have help with your children ? I hope your not struggling on your own.
little ones are so exhausting and cant understand why mum is not well.
I can tell you that when my husband was 1st on Thalidomide he too was having a bad time but he started it in August and had a drug holiday in December and January had his harvest in February while he had balloon kyphoplasty on his spine. He went back on it in end of February (last year) and had his stem cell transplant in the May.
The break from the drugs was all he needed to get back to being himself sort of but it gave him the time to regroup and get himself together for the next round.
He went back on it for a few months before his transplant which he coped with really really well.
He is now on it again while waiting for his 2nd transplant. It is a good medication. But it is also very toxic at the outset and it takes a while for your body to get used to it. This time he does not take Dex and he is tolerating it really well.
Good luck with the appointment and imagine your telling the children off for being naughty when you speak to the Dr. It will stop you feeling weak willed, and prevent your giving in, Can you take someone with you when you go to see the Dr, it helps if someone can re-iterate to them how you feel.
Peters Dr always looks to me when he is seeking a response from Peter as he Peter never used to tell the Dr how it is. He like you feels weak as water but goes in there and says 'IM FINE'
I could kick him.
The Dr cannot read your mind so be honest an Good Luck. Keep your chin up we are rooting for You.
Love
Min
Dear Sharon
Just caught up with your post. So sorry you are having such a rotten time with the CTD. Do hope you get an appointment soon and get the help and advice you need.
It's a very hard path you are having to tread so be as kind and forgiving to yourself as you can be, and as others say, make sure you are getting support with the children.
Very best wishes.
Mavis
Hi, just an updade after my meeting with my consultant today. It's a differnt member of the team I see for my reviews and although very nice, he's just not been listening to me and telling me I have no option but to put up with it really. Well my consultant was a little more sympathetic, checked the protocol for the trial and has altered my Dex and Thalidomide doses for my next cycle. I'm also having a weeks break from the Thalidomide for this last week of my 4th cycle.
I'm feeling a little apprehensive about it all as My paraprotein reduction at the end of cycle 3 was only 3 (22-19). It's slowing down now and will plateau soon and I worry the reduction in drugs may have little or no effect. Time will tell I suppose. I have to try it as I just cannot go on the way I have been doing. I need to get a little bit of my life back and my husband needs to see his wife and my kids their mum.
I learned today I have a possible 8 cycles and need to achieve a 90% PP reduction before SCT but if I don't, the computer decides (because I'm on the trial)whether I get Velcade or nothing – straight to SCT. All scary stuff. I don't really like the idea of not getting a low PP before SCT but I suppose others have gone through it.
Anyway, I'm feeling a little more possitive today (that could be the Dex!) but I have some sort of a plan now.
Min, Eve and Mavis, I do have help with the kids (kind of!) My husband gave up work and became my carer when all this started as I just couldn't cope. We're not any worse off finantially, in fact slightly better off really to be honest. Living on one average wage was hard and bills were being filed in the appropriate cabinet (the bin). We're getting there now. He's not the best carer in the world but then I'm not the best patient. I've always been independent and find it difficult not to be now. None of my family have visited me and my Dad and brother have only just recently contacted me. I don't have a lot of family just these two really and that really hurt. Paul's family have been great though. His Mum and Dad have been wonderful and a massive help with Callum 5 and Anya 2. I have a lot to thank them for.
Glad to hear your husband's tolerating the Thalidomide, Min. Much as I like the little lift I get from Dex, I feel the Thalidomide might be easier to cope with on it's own.
Anyway, I'll see how I get on over the next month.
Thank you for your replies and support.
Sharon
Hi Sharon I am so pleased your consultant was more willing to listen to you. It sounds as if the other doctor was sticking rigidly to the trial protocols rather than adjusting doses for your benefit In my experience of trials the overiding factor is what is best for you as a patient and although the protocols are there there is room for changes when necessary. Try not to worry too much about your pp numbers , they can vary from day to day , but your doctors will look at your overall response to treatment. As for the sct try and put it aside for now and take each day as it comes Whilst the sct isnt exactly a picnic and there are some unpleasant side-effects you can get through it and hopefully be home within a few weeks! It will be worth it in the end and hopefully you will get what we all want complete remission or at the very least a very long period of partial remission without needing any treatment. I am glad you have such good support from your in-laws, mine were brilliant too , and I am sure you and your husband will both find a way to adjust to things and he will become more supportive and you will let him! Good luck and keep in touch love Bridget
Hi Sharon,
I can hear what you are saying and I can hear what you are not saying… and it is your silences that I find extraordinarily hurtful and hard to bear.
Your Dad and your brother are your world… your side of the church wedding… and, up to your marriage and nuclear family, your entire support network. Perhaps this is why you are independent and always have been… because you have had to learn to cope for yourself, by yourself.. I don't know your history, and I'm not prying… but it sounds/looks as if their tardiness in coming forward is nothing new to you… and not something you expect or expected to change because of the extraordinary circumstances you find yourself in now.
From my own experiences and from what I have seen and heard on this board, there are some people who just cannot cope with disease and suffering and illness… they are afraid by association… that regardless of the facts, possibilities and probabilities, they might 'catch' it… at the very least it reminds them of their own mortality and they don't want to face that… so they will hide, make excuses and, to all intents and purposes, disappear.
If… if this is the case… and only you will know… then stuff them. Their hesitation, fudging and lack of energy will only cause you pain and drain your positivity… don't let them do that to you… tell them exactly how it is and tell them what you need… then leave it to them to respond… you will soon know which way their wind is going to blow…
Paul's Mum and Dad have made you theirs… they have laid claim to the care and support of Callum and Anya… together with Paul they have made your world theirs and deep respect for doing so IMHO. In a perfect world their contribution would be a top up to your Dad's and your brother's… but that doesn't look like happening – although I hope and wish with all my heart that it would/does.
Yes, you need time to be a wife… and a Mum… and a daughter (to the right people) – you need this because it is too easy to become a patient, a victim, another set of statistics in the clinic.
You sound as if you are all there 🙂 Your independence is admirable… but it also sounds like you have some remarkably caring and loving people around you… your carer for starters… and I wish you all the very best as you chivy the medics into treating you as a person not a unit… just ensure you treat yourself as a human being first as well.
Dai.
Hi Sharon
just caught up with your post I had the same symptoms with thalidpmide
so I stayed on a 100mgs which I managed quite well I went into remmission after four months april 2009 but I kept on with the thalidomide for a further year as after the intial treatment I seemed to cope with it until I got pn so had to stop . I shook at lot at first also the anti B ciproflocin gave me a terrible rash I did have one shot stay in hospital due to the shaking been ok since except for a bought of shingles (ouch) so with a bit of luck you will start to cope better Good Luck
Love Jo x
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