Thanks fie your good wishes, yes we live in Lanarkshire in Scotland. Dad is going to have his stem cells harvested and then make a decision on whether to go ahead with SCT once all his results are in x

Thank you for your kind reply on my post. I am looking through the forum and I am sorry to hear MM has reared it's ugly head again for Slim and yourself. As I'm sure you are aware there is plenty of support on here for you both.

Sending you kind wishes and support,

Clara x

My Dad also suffers with PN, there is info from a Professor on Myeloma Uk Tv (look at bottom of the page). Has your mum tried Capsaicin cream or Vicks on the soles of her feet? Capsaicin cream is only available on prescription here. Perhaps you could get this in Iran.

Best Wishes
Clara

I've not been on much lately but have been reading through posts catching up on how everyone is doing and see there are many new faces in the forum. For everyone who has helped me in the past I want to say a huge thank you and for those who are new I would like to give some info,

1 year ago my dad was diagnosed this amyloidosis…[Read more]

Can anyone tell me if its usual for free light chains to increase after CTD has finished? My Dad was given a complete response to Amyloidosis and MM 6 weeks ago and FLC and PP levels had platued. His bloods are sent down to the Royal Free in London as they look after his AA (Amyloid) and they send a report of the levels by post to…[Read more]

So glad to hear your great news, Clara x

Hope you get out of hospital soon, my dad was diagnosed in January and had Radiotherapy which has helped with pain, he has a mass of myeloma at the bottom of his spine and hip. He is on CTD and other than tiredness is doing ok. We're all rooting for you on here and here to help!

Gill re:constipation, make sure you take all the…[Read more]

Loving your new profile pic it suits you! My Dad is being considered for SCT so I am finding it great picking up all the comments on your question. He has been told its not something to go into lightly as the blast of chemo is likely to make him quite ill for a week, however he is 62 so they are having a meeting to discuss. So far he…[Read more]

I haven't been on the forum for a while so I am upset to hear John isn't doing so well. I am sending you love and big hugs and strength to you both, you were so kind responding to my previous posts about Ameloiyd. I think your memory book is fantastic idea and your kids will treasure it, you your family and friends can compile some…[Read more]

I just wanted to pop by and wish you and your Dad/Husband strength in the coming months, it sounds like you are a close family and that will get you by. Asking questions as time goes on and when you understand more about MM will come in time, its such a maze of terminoligys(spelling?) that none of us have came across…[Read more]

Thank you so much for your post,

You are right in a way we are now getting to grips with AA and MM, as with John my Dad posts bloods down to the Royal Free every month and so far the levels are coming down nicely and at a good rate, we will be going back down in August again for 6 month scan. Dads AA is on his tongue, nerves…[Read more]

David can I just say your info on getting fluid down is working a treat for my Dad who is now pouring pints of water at said times instead of continually pouring smaller glasses time after time and he is now finding it easier to drink so much so thanks for the tip!

Only Me! Good to hear from you and that your Mum is doing so…[Read more]

I don't have much to say other than I am thinking of you and Stephen, love to you both xxxxx

I think you are dealing with the info you are given in the right way for you. My dad who has MM leaves all the figures up to my mum and myself to look into and if there is some numbers that will give him a boost on his journey he is happy to hear about them but he doesn't want to be bogged down with anylising numbers he just want to…[Read more]

Glad you have had a moan, it then allows the rest of us to follow suit and let you know you are not alone! My Dad is being looked after by 3 different hospitals which don't communicate they all just deal with the part of him that they specialise in, they don't look at him as a whole person which is very frustrating as all conditions are…[Read more]

Thats great news about the reduction in your light chains, it certainly is encouraging and makes the side effects of CTD worth it to see them reducing in such high numbers. My Dad got his appointment in for August 10th/11th at the royal free so we cross paths!
It is great to share info, after reading your post i googled nephrotic…[Read more]

I don't know what I can say to take away your sorrow, having lost a brother who was aged 34 I can sympathise some what but to have lost 2 brothers in less than a year must be heartbreaking. My Dad has Myeloma and has had symptoms for approx 2 years before being diagnosed I can understand your anger and your grief. You will find…[Read more]

Great to hear you are going to be raising money for Myeloma UK this will give you something positive to focus on.

My Dad was diagnosed in January and it was a major shock as he has always been fit and well. You will find great support on this site and great info on treatment, side effects etc. There is so much info to take in and 2…[Read more]

Thanks for your post back, my Dad is 62. Today we received the first of his results which read as follows 18/1/11 results from our visit to the Royal Free, CTD was delayed due to a chest infection.

18/1/11 Kappa 13.1 Lambda 502.0 Ratio 0.03
27/1/11 Kappa 11.6 Lambda 485.0 Ratio 0.02
22/3/11 Kappa 15.1 Lambda 137.0 Ratio…[Read more]

Swollen Ankles
Mood swings (due to the Dex I believe)
Feeling…[Read more]

My Dad is on his 2nd lot of CTD for MM, he doesn't have any intolerences so I can't help with your connection there however my Dad was diagnosed with amyloidosis in January and MM in February so I can understand somewhat the minefield you have to go through and I send my best wishes to you on your journey.

Can I ask if you have…[Read more]

Thats given me some peace of mind, I'll give the nurse a call tomorrow,

Cheers clara xxxx

I was wondering if its a common side effect on CDT to have swollen lower legs?

My Dad is on week 2 of CDT and today you can't even see his ankle bones, he has a slight rash on his face too.

Of course he has only told us about his swollen legs at this time of night when we can't call the nurse to ask if its normal.

Any…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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

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…[Read more]

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…[Read more]

I have already been welcomed when on other threads and thought I'd start my own. My Dad was diagnosed with AL Amyloid 2 weeks ago in London. They hadn't had all test results and we were told AL wasn't cancer but treated in the same way with CTD. We went this week to our local hospital to discuss CTD with the plan to start treatment…[Read more]

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…[Read more]

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…[Read more]