Hello Eve

Wow, Slim sounds like a real fighter and I am so pleased that things are going well for him at the moment. it is amazing how much the human body can take isn't it. I would imagine the chemical compound of our loved ones is pretty mind blowing at the moment!.

Mum was initially very sick with the Clexane however the anti sickness…[Read more]

Hi Dai

Thanks for the reply and so sorry to hear that you have been through it as well. How did you find being on the Warfarin? I pressume that mum will be moved onto this shortly. She goes to see her consultant on Wednesday next week so hopefully we will find out then if they plan to take her off the revlamid. I hope not as it appears to…[Read more]

Thank you Eve and I am sorry to hear that Slim has suffered from clots as well. Do you mind if I ask if the cause was Revlimid? and also is there anything that mum could be doing at home to ensure she is treating the clots in the most appropriate way? The doctor has said that she will have to inject herself with 40mg of clexane in the morning…[Read more]

Many Thanks Jet and I am so pleased and inspired to hear that you are doing so well. Long may it continue

Best Wishes

Helen

Hi both,

Thanks so much for the replies. They were really useful. May I ask how long it took to get over the SCT after you left hospital?

Thanks and keep smiling

Helen

Hi All,

Glad to hear that you are all doing so well post SCT. I was wondering if I could ask a bit of a random question. My mum is currently on her 4th cycle of treatment (she is on the Revlamid Trials drug) and will eventually have a STC. My dad would really like to buy her a lap top for Christmas so that she doesnt feel so isolated when in…[Read more]

Hi Helen and Eve,

Hope you are both well. Helen are you still heading in on the 16th for your SCT? Hope they managed to find you a bed.

Mum is not very good at the moment. She has to go into hospital today becuase her liver function test was of concern to the Doctor. They have taken her off all meds while they find out what is up with…[Read more]

Thanks Bridgette. I must keep reminding myself that the medication is strong stuff and may take mums body a while to adjust to. It seems crazy that she is taking so much of the stuff as she has always been very anti medication. It is such a shame that she has had this 'blip' following the good news that her PP level reduced to 5.5 after the…[Read more]

Hi Bridget,

Hope you had a good weekend. I am afraid I have another question for you. Mum has had two blood tests; one on Friday and one today (Monday). Each time the liver function result has been 'of concern' to the doctors. They had told her to stop taking all medication and want her to go to see them tomorrow to have further tests and a…[Read more]

Bridget, you were not rambling at all. Wow, you are so brave. You sound like you have really been through it over the past few years but so glad that you are finding life to be a little more normal now.

It is so frustrating as mum and dad retired together about a year and half ago and they were looking forward to it so much. Now they are…[Read more]

Morning Min. Really glad to hear that your husband is on good form and long may it continue. I will mention to dad about serving mums food up on a tea plate. Mum decides what she wants for dinner at about lunch time on each day however, when it is presented to her, she often cant face it.

Hi Bridget. Lovely to meet you. I have read many of…[Read more]

Thanks so much min. I will ensure mum calls the trials nurse in the morning.meanwhile I have told her to keep the fluids up.I think she is reluctant to take any more pills. I wish there was something to increase her appetite. My dad cooks delicious meals bu she just can't face it when it is put in front of her 🙁 How is your husband at the…[Read more]

Hi all. I am Helen and my mum started the RCD trial a couple of months ago. I must admit it is comforting to read all of your posts allows me to pass reassuring information onto mum. I think you are all so brave and positive and that is half the battle with fighting this disease. Mum went to see the consultant last Wednesday and her pp level has…[Read more]

Hi Helen

Really glad to hear that you responded so well to treatment. I hope so much that mum is the same.

She had her radiotherapy today and I think that it has hit her pretty hard as she seems to be in more pain now and went straight home to bed. The radiologists have said that her pain may get worse before it gets better so I hope…[Read more]

Hi Helen

Fingers crossed for the 15th. I will be thinking of you and sending lots of positive thoughts as I do with my mum every day.

Your symptoms sound very similar to mums. She has had the croaky voice, is very tired (especially after about 5pm ish and constipation. She has been taking a packet mix of something to help with the…[Read more]

Hi Helen.

Thanks so much for the reply. I am sorry to hear that you have been through a tough time of late but pleased to hear that you are on track now to recieve your SCT. Have you got an appointment booked yet? I wish you all the best and please let me know how you get on. I will be thinking of you.
Mum has been diagnosed now for two…[Read more]

Hi again folks.

Mum has come out in a rash on top of her arms and on her tummy. She finished the first cycle of the RCD trial last week. These things always seem to happen at the weekend when no trials nurses are working 🙁 Is this rash that she is experiencing common and do you think that we should be contacting A&E? Thanks all xx

Thanks for your reply Mike, I must admit that the whole thing is a bit of a massive learning curve hence all the questions!! Mum took her second lot of 20 a day tablets for four days last week. To be honest, when she is on them, she seems much brighter and like you, very hyper!! After the four days she seems to be incredibly tired and no way…[Read more]

Me again. Just spoken to dad and he said mum has been confused today and has slept all day pretty much. Is this normal? Thanks in advance
Helen x