[helenpageukParticipant]

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 constipation however this seems to have the opposite affect. It is unfortunate that it is an all or nothing situation.

Mum also has the 'dex highs' and seems almost hyper for the 4 days on dex and then extremely tired when she stops. I know that mum had a bit of an issue with taking so many tablets at first, especially as she is usually so anti tablets and is usually 'fit as a fiddle'. I suggested that she put the 20 tablets into a yoghurt after advice from a friend who's mum also has Myeloma.

Mum has her radiotherapy session tomorrow and then has to go for her first consultation with the consultant on Wednesday to find out if the first cycle of chemo has had any affect. Do you mind me asking how many cycles it took until your paraprotein level reduced?

Mum is 64 and I am 29. I also have a 28 year old brother. I must admit that the diagnosis was a huge shock to us all. I dealt with the news by reading up as much on the disease as possible so I know what to expect and can be there for mum and try and understand what she is feeling by going on sites like this one and reassuring her that she is not alone.

My brother did not take the news too well at first and was extremely quiet at first. He is a very 'closed book' however after lots of chats and reassurance, he seems to be a lot more positive. If ever your children fancy a chat I can let you have my personal e mail address if that helps. Sometimes it is good to talk to someone who is in the same position.

Anyway, keep going and remember that there is light at the end of the tunnel.

Best Wishes

Helen

[helenpageukParticipant]

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 months and has just completed her first cycle. She has to go in for an appointment with the consultant on Wednesday to see if the drugs have taken affect at all yet. Fingers crossed that it will be good news.
She called the trials nurse this morning about the rash and they said that it was fairly common with chemo.
Mum is having radiotherapy tomorrow morning so hopefully that should help to relieve pain in her ribs and back.

All the best wishes for you Helen. Do keep in touch

Helen x

[helenpageukParticipant]

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

[helenpageukParticipant]

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 near as bright. I am guessing that this means that she is still in the first cycle? She has had two blood tests since the start and she has to go to see the specialist and trial nurses on the 27th so fingers crossed the pp level will have decreased. They will decide then what the next stage will be.

I went with mum and dad to the hospital yesterday for her first and only dose of radiotherapy. The oncology department was pretty scary to be honest and really 'brought it home' to me, exactly what we are dealing with. It was also very frustrating as she had driven to Cheltenham (about 25 miles from home) only to find that the machine had broken! She has another appointment booked in for next Tuesday so fingers crossed that the radiotherapy will help to reduce the pain in her lower back and rib area. Have you had the radiotheraoy at all and did you find it worked for you?

How are you finding the RCD trial? I do hope that your body has responded positively.

Thanks again for replying. It really does help me. I make sure I pass on all the info to mum as she is not keen on joining the forum.

Take care

Helen

[helenpageukParticipant]

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

[helenpageukParticipant]

Hi all (hi again Tom)

My name is Helen.

My mum has recently been diagnosed with Myeloma and has been put on the RCD trial and has just completed her second cycle of the 20 tablets in the morning. She has been doing great and is incredibly positive however today she has had her first bad day. She has had severe diarrhea today and is incredibly tired all the time.I have just spoken to her on the phone and her voice sounded very croaky. Is this normal? I figured that her body may be recovering from the sheer amount of medication that she has taken over the last 4 days??

Take care all.

Helen

[helenpageukParticipant]

Thanks Tom, that's really useful. I am so glad that I found this website. My Fiance, brother and sister in law are currently raising lots of money for Myeloma UK to make sure that it continues with the amazing work that they currently do.
I am glad to hear that you are doing well. That is amazing that you are only on the Zometa 🙂 I am really pleased for you. May I ask how the stem cell transplant was? I have read bits and bobs about it and it doesn't sound too great.
Mum goes to hospital this Wednesday for her first check up. I think she is taking lots of questions to ask with her. I know that since the Zometa infusion, she is generally a lot more achey and I think she would like to ask the Doctor questions about that. She also was woken last night with a terrible pain on the right hand side of her body which she described as a similar feeling to the worst case of indigestion she has ever had.
She is taking 10mg of Morphine in the morning and 10mg on the evening to help with the pain from her back and rib area and then liquid morphine about twice in the day. She says that it is not really having an effect yet so I think she may ask the doctor about increasing the dose. I think she is generally fairly concerned about the amount of medication that she is putting into her body and the effect that it will have on her insides. She starts her 20 pills in the morning again tomorrow.

Anyway, it is Sunday night and I am sure that you don't want to hear me rambling on any more. Sooo glad to have found this website though. From past experience, I am a firm believer that it is better to talk to people who understand what you are going through so I am so grateful for all of your replies.

Take Care

Helen

[helenpageukParticipant]

Thanks Eve. Mum has text me this morning to say that her aches and pains seem to have subsided and her temperature has returned to normal 🙂 I will go on other sites to ask my questions in future.

Thank you

Helen

[helenpageukParticipant]

Me again. Mum just got back from a&e as her temperature went up to 38.2. The dr advised that she should do this. They have just advised her to take paracetamol and drink lots. Did the zometa cause you to have a temperature?Sorry to keep asking so many questions! Best wishes Helen

[helenpageukParticipant]

Thanks so much Tom and good to hear that the symptoms are short lived. All the best for tomorrow. Are you on the same trial as mum? If so how are you finding it? Best wishes Helen

[helenpageukParticipant]

Hi there everyone.
My mum (64) was diagnosed with Myeloma 3 weeks ago and has just started on the myeloma XI trial. She has been picked for the RCD trial.
She had her first lot of Zometa yesterday and unfortunately, today she is experiencing aches on her joints all over her body. Is this normal and how long will it last?

Thanks in advance

Helen

[Author]

Posts