Dear Dai and Eve
You are both so right, since my relapse I have felt that the elephant has had to be addressed directly, as I feel it walks into the room with me. If people do not say hello to it it and ask it how it is, gets bigger and bigger until I find it sitting on my chest and I have to talk about its feelings and deflate it a bit. What…[Read more]

Dear Eva
Thanks very much for this, it is only by you people ahead of us that we discover the little tips and wrinkles which can alleviate worry and discomfort. I'm very grateful to you
Love Helen

Hi Dai

It's not that long ago I was saying to you,that you were going along one branch of the tree and Slim along another, how wrong could I be, trying t be positive,I could have lost him that first year and here we are 2 1/2 years later ,we did a lot of reminiscing last night,things we use to do !!!! Only out for 1 1/2 hours,he could only…[Read more]

Dear Tom
I do hope you are right, I'm really not relishing starting over on this palaver again, but if it knocks it back then i dont really have an option. Are you fattening yourself up before stem cell collection? I do hope so, it is quite a rigorous procedure.
Emma just use the time with your mum while she is well, it is hard but you have time…[Read more]

Hi Everyone

Tonight Slim and myself went out for a meal, to celebrate our 2nd wedding anniversary ,this one occasion when the elephant should be locked away in the cupboard , 2 years ago getting married in ITU, no honey moon,the first anniversary Matty my grandson died two days before,plus Slim was in hospital waiting SCT. So everything low…[Read more]

Hi Helen

My feelings is hit it hard,Velcade worked for Slim,I would like to see maintenance with Velcade,they know for some it stops working!!!!,Slims on your tail,another BMB on 7 then wait for consultant on 24 for decision !!!

Good luck Helen get the Palmers cocoa butter formula and tell hubby massage every night,just do not tell him…[Read more]

Hi Sandra

Have a look under the side effects section on this site, because there is a recent post under the heading of Zometa flu with 33 contributions relating to this issue which you and your mom should find informative and useful.

On my initial Zometa infusion, I certainly felt ill several days later with increased bone pain, fever and…[Read more]

Hello Elizabeth
Are you ok?
Love Helen

Hi Ann

It is strange, yet comforting, that we all experience so many similar situations with myeloma. My husband also arranged a spread sheet for each cycle of tablets. We now have a graph to monitor my light chain levels! But the most useful gift which I was given by my mom was an A5 pill box in which I could place a week's supply of tablets…[Read more]

HI Paul
I am also on the same regime as you no real side effects except my ankles swell a bit just a bit of fluid retention so not so bad hate the dex though
I am diabetic so it really plays my sugars up but i can cope with that
good luck for the rest of your treatment
Regards Jo

Hi Mavis

I agree we have so many things to be grateful for especially the people who create these wonderful drugs that keep us going thank the Lord
Love Jo x

hI Sandie

sorry I cannot help with the Zometa as I dont have it but some people have reported flu like sysmptoms when they first get it but i think they settle down after a while
Love Jox

hi Sandie

I was the same as your mun resistant to the first two antiB'S the good old IV penicillin some times the old drugs are still best how is your mum doing ok now i hope
Regards jO

Only since my shock diagnosis of myeloma three years ago, I've realised that I have needed to talk about the elephant in the room in order to ensure my partner knows my thoughts about my wishes. However, it's not just one conversation, but an on going series of little discussions and comments

I must admit most of the discussions have come…[Read more]

Hi Sarah

Nice to know you look in and trying to get on with life,how many lambs this year,I bet you are glad to be in the south,those poor animals up north have taken a battering .

Grief does have to be done your own way, its a year on 24 for Matty,seems like yesterday,Slim came out of hospital,as it was all to much,next month it will be…[Read more]

Hi Mandy

It is totally understandable you are feeling anxious with panic attacks.
You have been through a lot of complications as a result of your myeloma treatment and you are now facing more major treatment with your SCT and Kyphoplasty. It is such a shock when you are diagnosed with myeloma, but it is also emotionally hard to go through so…[Read more]

Hi Helen

I'm really sorry to hear your myeloma has relapsed. It's no wonder your emotions are all over the place, it's completely understandable.

I think it was very fortunate your consultant recommended a bmb otherwise any abnormalities of cells would not have been identified so early. At least with you quickly changing your treatment…[Read more]

Afternoon Ann

I would phone up your support myeloma nurse at your hospital to discuss your current treatment. Ask when the cyclophosphamide part of your CTD regime will begin, when you are scheduled to take your second bisphosphonate and at the same time you could ask whether there are going to be other drugs introduced into your cycles such…[Read more]

Hello Mavis
I went to New Zealand and was covered when in remission. That was with world first.
Love Helen

Hi Ann

Good news about your MRI scan results showing damage to only one vertebra. Hopefully you will be able to sleep better when the bones start to heal.

You mention you are on CTD treatment and say you are taking thalidomide and dex steroids, but you do not mention the cyclophosphamide drug which is the initial chemotherapy part of the…[Read more]