I do hope that you settle into the new drug regime and that it works to bring your PP readings down. Sympathise about the effect of the steroids. One thing I found though, is that it really helped my joint pain.

I waited to reply as I was seeing my Consultant today. My PP has just gone up by 1 to 10 in three months so no treatment…[Read more]

Welcome to this site. I am sure you will find it helpful. I certainly did in the early years of my diagnosis in 2010. You asked about staging of the disease. One thing I have learnt is, it doesn’t really matter. This is a very individual disease and everyone reacts differently to the treatment. I am so sorry your dad is r…[Read more]

Thank you for taking the time to reply to my post. It is good to know that others are cheerfully coping with the Google’s this horrible MM throws at us.

I was diagnosed with Oesteonecrosis. I have to say that on this occasion the NHS has been marvellous to me. In less than a fortnight from my visit to the Dentist, I was s…[Read more]

I have found your posts very helpful. I have been on Zometa from about 2012 – four weekly until three cycles ago when I ask my Consultant if I could come off. I had read it stays in the system and was finding the logistics of getting to hospital for the infusions more and more difficult. I had one break of three months so I…[Read more]

A happy and peaceful Christmas.

We are so fortunate to still be here aren’t we. I always feel so grateful to all who took part in earlier Trials and to all the researchers.

I am still just on Zometa infusions. Wanted to come off them, but Dr agreed to 8 weekly instead of 4 weekly. He said this w…[Read more]

First you have to know about a Myeloma, a doctor might only see it once in his life time,so GP seldom pick it up, usually it’s discovered…[Read more]

Just wanted to say it isn’t the end if you aren’t able to have a SCT. It is nearly 7 years since I was diagnosed. I had CDT and the went into resession. My paraprotein is now gradually rising, but it is good for me to know there are so many new drugs on the market now. Options are improving all the time.
I have a monthly Zometa infusion for…[Read more]

Ian’s strap line about “using every day” is written at the top of my diary.

Helen and Andy, I do hope the…[Read more]

Don’t know if anyone answered your points so in case they didn’t here goes! Yes you should keep having regular infusions of Zometa. It kept me MM free for three years before I had to come off because of problems with my kidneys. Since coming off I have had much more pain and my PP has begun to rise.

As for X-rays and scan, some…[Read more]

You can tell a lot of us “old stagers” are not on here often these days in that no one has replied to you!

Great that you are still getting treatment that is allowing your new normal to continue! Do hope you get to Greece and have a great time. Just imagine, four years ago these drugs weren’t in existence. As you say “every day is a…[Read more]

The bit in your post I am replying to is the question about infusions. I feel rather an expert on this subject. I had about four years of four weekly Zometa infusions to prevent further bone damage. I was only taken off when I began to have kidney problems.
All I can say is, since I finished infusions my pain has steadily increased…[Read more]

I decide to come back and tell you,why you should grab life by the throat and enjoy evey minute you have,I will not be replying to any answers,!!

I was diagnosed with Bladder Cancer in June of this year,although it’s very…[Read more]

I’m hardly on site these days but wanted to say that I hope your holidays have built you up. No reason why your protein level shouldn’t stabilise. After all this is an unpredictable disease. I do hope so.

Enjoy every day and the summer here, while it lasts!

Love

Mavis

I am hardly on Site now as apart from you and Andy there don’t seem to be many names I recognise.

Congratulations on your fifth anniversary. It’s strange isn’t it to arrive at a point you didn’t think you would arrive at. I am now well into my sixth year post diagnosis so feel grateful I have survived so lon. Didn’t think I would…[Read more]

I came home 2 weeks ago,after nearly 4 months away,enjoyed the travelling and the weather was very good,I nearly gave up in the first month as I found it very lonely,never realised couples in General Don,t speak to single women on their own!! A real eye opener,but after a month I did get use to it and began to realise I liked my own…[Read more]

After my operation and radiotherapy for a plasmacytoma I had a year without any treatment except tablets for bone strengthening. I then had a bad period and had six lots of CDT. I then had three years of nothing else but bone strengthening infusions. These only dis continued because my kidney function was deteriorating.

I used to be…[Read more]

Strikes me we could do with starting some new posts as this one just goes on and on!

Just wanted to tell Helen and Andy I was thinking of them!

And best wishes to all using this post!

Mavis X

Great news. I read somewhere that the longer your remission, the longer your remission will be!! Do trust yours lasts and lasts.

Do enjoy every day you are given.

Very best wishes.

Mavis

A bit late to respond to your post, but I don’t come on so often now. Wonder how your Dad is getting on? It’s quite possible he is in the ” wait and see” phase which can be even if he has bone lesions. Treatment is all based around readings of the blood tests. Do you have any readings for your Dad?

Hope all is as well as can be…[Read more]

Just caught up with all your posts. Welcome to the site from me. I’m rather an old stager now at over 5 years post diagnosis and currently in remission though I have lots of problems with bone pain and my kidneys are compromised.

You seem to be remarkably positive in spite of everything. I do find this…[Read more]

Have just read your post. Like you I haven’t been on so often lately. So sorry to hear about your daughter. Even though not totally unexpected, never the less it must have been a real body blow.

Time will no doubt help, but will never take away the fact that she is no longer here to be loved and to show love. Do you have any faith…[Read more]

Time to grieve is not something that we decide,it’s not something that you can just decide to do,it comes in so many different forms,to me it’s a bit of an ambush,one minute ok next the tears slip down my cheeks.

The house to you has been important ,but it’s not your love or your memories,just 4 walls and a roof,your love of your mum…[Read more]

I was interested in your post. Welcome to the Forum.

Sorry, I have nothing to offer on the question you ask, but wonder if you think coin God zometa and relapsing are linked?

I had my final zometa in May after well over three years of four weekly infusions. This was because my kidney function was deteriorating. Glad to say, in…[Read more]

I am out on my lonesome for Christmas,I don,t want my girls to start thinking who,s going to have mum,they have threatened me with forcing me to have a micro chip,so they can keep track of me..
Laying ghost to rest!!! Cannot go to…[Read more]

I am so sorry for your loss,before a consent form is signed the doctor has to explain all the risk involved,you tend to be bombarded with information ,so in the light of this I would say it was explained and because of the amount of info you have to listen too,it’s been said but not regested. I do think information like this should be…[Read more]

Andy good to know you are much much better,when that drinking arm starts working,then I know you are fine, I hope you are helping Tom,by drinking his measure,he looks good,even though he is in a hospital bed,bet he has the nurses in stitches.

Helen no one ever gives up hope!! I look on it as an acceptance,that the miracle cure…[Read more]

Well except for Jean and Fiona we are widows,!!
And we all know it catches up with us at sometime,we are watching Tom going through his second SCT,and Wendy a SCT from a babies cord,so it must give a lot of hope for people treading in our footsteps.

Gill may I recommend Way Up to you,it’s not for everyone,and it does have a Facebook way…[Read more]

Fiona I find it easier just to let my mind flow,never rewrite anything again,so you get me as I think,plus my terrible grammar and spelling,but it’s the true version, warts and all as they say.
I do look in to UK Myeloma more mainly because it’s easier to follow,also having faces on there helps,you have beautiful…[Read more]

I have only just read the sad news of Colin’s death. I don’t tend to be on as often now.

Colin certainly faught a good fight against this dreadful disease. I am glad he is at last at peace.

Do hope good memories are helping as the numbness of the early days wears off.

All love.

Mavis x

So glad that things have turned the corner for you and Ian. Who would have thought it when Ian was so poorly and distressed in the early day after diagnosis.

Here’s to the future.

Best wishes.

Mavis

Thank you! If my previous post help you in any way,I am glad,it’s an awful situation,medically and with the present politics concerning Cancer drugs,they have no understanding of the mental anxiety that patients and family suffer.

We always tried to lock the myeloma away,in every sense of the word,Slims attitude was why worry about tomorrow…[Read more]

Strange ,although we are Facebook friends,we keep Myeloma locked away ,its the way it should be!!!, I really enjoy the scrabble as well,I would take more games on with you,but will be heading for France soon!! But I do envy your cruises,it’s so nice to see you are making the most of your time,long may it last.

Thanks for the news on…[Read more]

Just for the record Tom is just starting his second SCT, .
He has grabbed life by the throat,and making the most of it,holidays family and his lovely wife living life to the full. Tom has one thing on his mind on ward and upward!!!!!!

It’s a pity Jet and…[Read more]

I do hope your journey,s are long and the best you can make of them,Liz it’s best to escape the roller coaster as we all know it’s going to pass your way again,and Myeloma should not become normality,but in the end it’s the only thing you know.

Thank you both again,Stanley,Slim was always proud of me, but he is more likely to come back…[Read more]

I have just looked into your profile as no picture! And see how much you are now helping other people, I know I was too blunt at times! But you seemed to be able to get the message across very well, this is the way it should be,helping each other on this journey,then leaving that road and going on a different one.

It makes all of us…[Read more]

I have come along way in the last 5 years, 4 years of Slims illness and 1 year on my own,it’s a big learning curve,and I still look in on cyber friends,see how Tom or Andy plus a few others if they don,t post on the Facebook site UK Myeloma ,I worry. So Myeloma never really leaves my world although Slim has gone.

I just wanted to…[Read more]

Many of you won,t know me,as you will be newbies! But the old crowd will,the reason I am writing this,is that Slim always worried how I would manage once he died.

I have decided to let you know what has happened to me,I lost Slim one year ago on the 27 of August and I suppose it’s reflection time,although not a day goes by without…[Read more]

I can feel your frustration with you. As Andy has said this is a complex disease and each one of us is very different. I can say though, having read posts on here for five years, that having “only” a partial remission doesn’t seem to determine the progress of the disease. Some people don’t seem to achieve full remission even after a…[Read more]

Sorry no one has replied to you post. This should bring it to the top of the List again.

Glad that you are getting the pain under control. As I understand it, the law allows those to drive, if on controlled drugs, provided the drugs are properly prescribed and you are fit to drive.

I must admit, I find my car my lifeline.

Good luch…[Read more]

I realise I am answering the wrong thread, but hopefully you’ll receive it!

I’m sorry you are both finding Pomalidomide so difficult. I can see where you are though, in a catch 22. It is important isn’t it to get as much quality of life as possible. It’s a shame that your body doesn’t eventually tolerate the drugs with less…[Read more]

Thanks for your response. Does the OxyContin make you sleepy? I shall certainly discuss it as a possibility with the Pain Nurse. I did have it earlier. Can’t remember why I changed!

Best wishes to you.

Mavis

So glad Ian is the right side of his SCT in spite of set backs. I do hope you have some very good years ahead of you.

Love to you both.

Mavis x