[clarabellParticipant]

Thanks everyone!

Yes so far so good, however Dad has complained today of his feet being very cold but they are hot when touched, perhaps this is a side effect? He's feeling slightly queasy but hopefully the anti sickness pills will help.

He got an appointment in for the hospital for his Radiotherapy on Tuesday, typical I'm away with my work so can't go with him and Mum. From what I've read this will be a planning meeting and I'd really like to attend but flights etc are booked and my work have been good so far. In one way I think sod it, its only work Dads more important but as I need them to flexible with me in the coming months I don't want to upset the applecart by not attending my work.

Dad has a mass of Myeloma on his hip and bottom of his spine and I have read the risks involved and would really like to go to the hospital on Tuesday to find out more info.

Has anyone else had Radiotherapy in these areas and can give me some info? Does this give side effects and how does it go when given CTD at the same time? Don't know how many sessions he needs to have yet I suppose he will find this out on Tuesday.

I'm so glad this forum exists as its such a good way to express feelings and worries and get support.

Love and best wishes to all, Clara xxxx

[clarabellParticipant]

Hi Em,

As someone with a Dad who is newly diagnosed I know how you feel. I welcome you to this site as will all the other members with MM and family members who feel they don't know what to do. You have came to the right place as I have found so much info and support which is so useful when you don't know where to turn. I wish you and your family all the best love clara xxx

[clarabellParticipant]

Hi again only me!

Because i've had to take some flexi hours for my dads appointments I wasn't going to go next week for start of Dads CTD but after reading your post i'm wondering if i should? I hope you don't mind ne asking what age your mum is? My Dad is 62 but a young 62 if that makes sense? However all this info is hard to comprehend and i'm now wondering if i should go next week or do you think if my parents get a pill organiser that would help?

When we attended this week the hospital hadn't checked ct scan results and when i asked for them they told us dad has a mass on his hip which will need radiotherapy for and will now arrange.
My parents are early 60's and not old for their age, i'm early 30's and finding it all a bit too much to take in, do you think i should attened for info on start of CTD? Do you think the more the merrier to take in info? thanks Clara xxx

[clarabellParticipant]

Hi only me!

Glad to hear your mum is a lot chirpier, you also sound more positive too which is great, and i think thats what will get us all through, those who have Myeloma and family members. So glad to have found this site, Kay I will catch up wwith your posts and hope all is going well with you. Sending positive vibes to all, hugs clara x

[clarabellParticipant]

Hi Tanya,

Sorry I am unable to give much advice as I am new also to this site and trying to understand Myeloma, what I will say is there are lots of friendly helpful people who will guide you along. Best Wishes Clara xxx

[clarabellParticipant]

Hope all went well with your Mum today xx

[clarabellParticipant]

Hi Gaye/Min,

Thanks for all the info I think I am going to give Ellen a call. Unfortunately Dad didn't start his CTD today as they felt best to wait another week until his chest is better, I will take your advice Min and perhaps seek another form of antibiotics if required. We have been down to the Royal Free who were most helpful and diagnosed Dads AL, today we were told that our hospital will deal with the Myeloma and Royal Free with the amyloid and they will communicate at relevant times which is good but to date communication has been made via ourselves to the Royal Free as the local hospital seems to be failing to send them info on scans etc, but I guess this is just the usual case of the left and right hand, perhaps in time this will improve as its still early days. xxx

[clarabellParticipant]

Thanks so much only me, I extend a best wishes to you and your mum tomorrow and hope she has a relatively straight forward course of CTD with as little side effects as possible, I will keep up with your journey and hopefully we can offer support to one another as our parents progress with treatment, Clara x

[clarabellParticipant]

Thankd Bridget,

Yes I did mean Thalidomide just not spelling it correctly so many new words to learn however Thalidomide is one I am familiar with but just can't spell it!. Hopefully Dad will get started tomorrow on CTD and I'll keep you posted. Thanks for your help, I think Dad is to get the Parmidronate as I think that was what was mentioned to be given by IV. Thanks again, Clara

[clarabellParticipant]

Hi All,

Angie I hope I'm not gate crashing your thread, it does sound like my Dad and your Mum are at the same stage, My Dad is also due to start CTD on Tuesday, don't know whether this will happen as he has a chest infection. I see your Mum has been on steroids and perhaps my Dad might need some of these also. I do know that we have been told my Dad is to have a Stem Cell transplant in approx 6 months. Already it seems that our journey is to be one with lots of support and adivce from the members of this forum to which we shall be thankful. I will start my own thread and we can keep up with our parents treatment and side effects.

Best wishes to your Mum and family and all other Myeloma forum members xxxx

[clarabellParticipant]

Hi Angie, I'm in the same position, my dad has just been diagnosed so trying to read up and take in as much info as possible, yes i am now googling words and treatments that are completely alien and trying to digest what they mean and what different levels indicate. Its is a lot to try and take in but I'm using this forum and reading posts that does give some hope that all will become clear soon. Best Wishes for you and your family, clara

[clarabellParticipant]

Hi,

On here for the fist time, Dad was told he had AL amyloid 2 weeks ago and had bone marrow biopsy taken 6 weeks ago. Up until today we were told he did not have cancer. On meeting a consultant to start a course on tablet chemo today it was briefly mentioned about myeloma, we were told that we should know this from bone marrow biopsy, news to as as we had never had results, so you can imagine we came away very shocked and unable to take in the info given, hence i have been trying to read up on it via this website tonight. What confuses me is that a neighbour in our street has myeloma and receives treatment intravenously. There was a mention today that dad will most probably have stem cell transplant in 6 months.

Is Myeloma treated differently in patients with AL? Also we don't know what grade/stage of myeloma my dad has. Treatment has been held back for a week as my dad has a cold. I'm surprised it has taken 7 weeks for treatment to start but I am glad that we have a week to look into whether the treatment is correct for him.

We are very confused so any info would be great!

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