Hi Angelina,
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 great stories and memories which I'm sure John will also like to read.
Wishing you both all the best Clara xoxoxox
Hi Christin & Meike,
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 before, this forum is great for getting info and support. My Dad had what he was told was sciatica and only after him being diagnosed with MM and us asking questions did they discover in his CT scan that there was a mass on his hip, he was given radiotherapy and that has helped with the pain.
He is on CTD and due to finish his last cycle in August, he sleeps most of the time and is very weak but having said that his Paraproein levels have came down so we are very positive that he will reach remission and get back to a "normal" life in the coming months. I am keeping everything crossed for you and know how very difficult it is in the beginning, wishing you all well on your journey and will pop by to see how David is progressing, Clara xxxxx
Hi Angelina,
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 and a little on his kidneys. He is now onto 3rd cycle of CTD and goes into hospital every few weeks to get the bone drip. They have suggested he might be suitable for SCT but at the moment he is opposed to having a transplant as it seems so vigorous and he's not sure if he'd cope with the high dose of chemo, something to think about though. Can I ask if John had SCT or has he had 3 years remission after CTD alone?
I am so sorry to hear MM has reared its ugly head will John go back on a course of CTD? They have told my Dad there are no assurances how long after treatment MM will stay at bay I just hope that he gets another 3 years like John before having to go through this horrible cycle of chemo and like wise I hope John will kick MM's behind again!
I really would like to stay in touch. This site is a god send to pop in and out of for support and advice, we don't know any one with AA or MM and had never heard of it so it is difficult to explain to people what these things are without fully knowing yourself. There are few people on here with both so it would be good to keep in touch.
Sending you my thanks love and best wishes to you and John
Clarabell xxxxx
Hi Everyone,
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 well Dads levels dropped from 17 to 8.7 after 2 courses of CTD they delayed his 3rd cycle due to him being poorly for a couple of weeks and being constipated for 9 days but he is now back on track, not managing work now he's had 3 weeks off but determined he will get back asap bless him, Consultant said that they would consider him for SCT and gave us some info to take away, does seem alot to go through but if it means longer between the PP levels increasing he is up for it even tough its a few months down the line.He has looked at claiming some benefits but does't think he falls into the catagory of receiving them so hasn't completed the forms, I think this is a way of keeping him going that he will get back to work soon!
It has been quite stressful but I think we are all getting to terms with the understanding of treatment, timings and hospital visits, wishing you and your Mum all the best and keep in touch, love n hugs Clarabell xxxx
Hi Gill,
I don't have much to say other than I am thinking of you and Stephen, love to you both xxxxx
Hi Jet,
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 deal with symptoms and progress day to day. However I like others on this forum like to keep a check that the numbers are within a reasonable range eg my dad has PP level 14 and next week we will find out if there has been a reduction to this number.
best wishes clara xxx
Hi Eve,
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 linked but if we mention one of the other symptoms another hospital is looking at we are told that is "on the back burner" which is totaly not the case. I share in your frustration that everything takes soo long and considering we have emails/scanners etc they should all be upto speed with the various elements of my Dads condition.
Sorry to rant but it does feel good to let of some steam!
Best Wishes Clara xxxx
Hi Tracey,
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 syndrome as I was sure I had came across that before and low and behold after checking my Dads assesment from the Royal Free to our local hospital which we were given a copy of it said he had nephrotic syndrome and CKD stage 2. I presume that this isn't severe as no one has picked up on it but I will mention it at our hospital appointment next week when he goes for his MM review.
Like yourself I read about a skeletal survey and mentioned it to Dads consultant who said "oh have you not had one? i'll send you for one now" They use this as a marker for measuring your bones. It might be helpful to ask for a CT scan just to give you peace of mind. My Dad had one and they didn't check the results until I questioned it and they then seen that he had a mass on his hip, which had been put down as sciatica!
Dad has been told he can have an odd drink and now has a guiness or a glass of red wine which doesn't hinder him any! So enjoy a refreshment at your wedding next month,
Best Wishes Clara xxxx
Hi Bluebird,
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 much support here.I hope you will get the answers you so greatly need.
Sending you and your family much love and hugs Clara xxx
Hi Mark,
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 months down the line I am still on a learning curve. I find that I get as much info as I can on behalf of my parents, I don't always tell them everything I find out as its best for my Dad to deal with it day to day but I can call his nurse and discuss any worries I might have and this is a great help.
Keep us updated, sending best wishes to you and your family,
Clara x
Hi Tracey,
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 0.11
Not fully understanding what the differences mean we called the Royal Free but couldn't get to speak to our contact there. Obviously the Lambda has really decreased but Kappa and ratio has increased.
Like you my Dad is only 1 week into his second lot of CTD. He has amyloid on his nerve ends, mouth and a small amount on his kidneys, we are going in May as part of the Achemy study, there was no mention of SCT at our initial visit but this may have been due to the fact that Dads haematologist had failed to notify the Royal Free or us that he had MM at the time of our visit. Dads haematologist has mentioned SCT but I believe this is for the MM. Dads bone marrow results are at the same range as yourself at 20-30%. We do find that our local hospital only look at the MM and don't look at the amyloid which is frustrating as they are linked.
Have you had a CT scan? Dads showed a mass on his hip and he has just had 5 days of RT to keep it contained.
He also has fluid retention and is finding it really difficult to get the 3 litres of fluid down his neck every day and is also finding the Dex a nightmare!
I am interested in your description of IGA Myeloma ( I googled it!) and wasn't aware there were different types, I'm going to ask at Dads hospital appointment next week which type my Dad has. Unforunately minimum information is given unless we ask at our local hospital.
I don't know about you but my Dad seems to struggle with the fact that he can't keep up socially the way he used to (everyone calls him Peter Pan) he only manages out for 1-2 hours at the weekend where he would be out for the duration usually. Hopefully the CTD is having the right effect or next month he'll be put onto something else and then he can try and gain some normality in life again.
I'll keep up with your posts and will update in May after visiting the RFree again. I really do wish the best as its difficult dealing with MM with out having Amyloid and nephrotic syndrome thrown in!
Keep in touch through your journey and good luck
Love Clara xxxxxxxx
Thats wonderful news Shirley, no wonder your smiling like a cheshire cat! Its great to hear such positive news, love Clara xxx
Hi Tracey,
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 been refered to the Royal Free in London for your amyloidosis? We went there in January and they are fantastic, we are going again mid May. I haven't found anyone on this site yet that has both these conditions and what impact they have on each other and how they are treated in relation to one another. I do know that my Dad will have to attend the Royal Free every 6 months ongoing but as he is part of a trial we are going back after 3 months. This forum is excellent for support along the way, best wishes Clara xx
Thanks everyone, Dad has the hospital tomorrow they are going to give him some diuretics which should help, he has been putting cream on which has helped, thank you min! He's really struggling with the anti blood clot injection he has to take everyday, its very painful and he has a good pain threshold so its bothering him. Hopefully they can help with that tomorrow too.
Love n best wishes to all Clara xxx
Thanks Bridget,
Thats given me some peace of mind, I'll give the nurse a call tomorrow,
Cheers clara xxxx
