Hi Jan

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]

Dear Jennifer,

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]

Hi Jan and Michael

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]

Hi Jan and others

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]

Hi Helen,
Thanks for the information. I’m glad that Thalidomide is working so well for you like it did for me. At the moment my PP is settling around 10 so thankfully no recommendations for treatment yet. Have also persuaded them to let me reduce the Zometa infusions to eight weekly. I just don’t want to be tied to hospital appointments I’d…[Read more]

Hi Helen
Happy New Year to you too. I was exhausted after Christmas having done two big services with help of crutches and perching stool!
Our lives have been made doubly difficult because Gordon isn’t at all well with heart failure and hand and shoulder pain which we have eventually found out is a boney spur putting pressure on a nerve in his n…[Read more]

Hi Ceri
Keep fighting for your mum. It’s the last thing you can do for her. Have you thought of involving the hospital Social Worker?
Lots of love.
Mavis xx

Dear Clover
I am so sorry to hear that this awful disease has taken your dear Dad after he gave it such a mighty battle.
I know it must be even more poignant to loose him at this time of year which is supposed to herald hope.
May you find comfort in many happy memories. Death never has the last word, love does.
Love to you and your family.
Mavis x

Hi Helen, Andy and everyone else out there!

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]

Hi

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]

I just signed into page after a very long time. I think, like others, sometimes it just seems important to keep your head down and just keep plodding on! However, I do often wonder how you all are as after all we are the old staters now.

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]

Hi Cheryl

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]

Hi Andy

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]

Hi Cheryl

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]

Hi Andy

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

Hi Maureen
Keep hopeful. Do hope news for Ian is better than you fear when you go back to hospital.
Love.
Mavis

Hi Helen

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]

Hi Averil

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]

Hi Folks

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

Hi Phil

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