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]

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’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]

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]

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 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

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

Welcome to the Site as an active member. I’m sure Ellen is right about no having your husband’s particular kind of plasmacytoma. I was diagnosed because of a plasmacytoma which was compressing my spinal cord. It was successfully removed by surgery and metal support put in my spine.

I do hope they decide on a regime of treatment for…[Read more]

Glad to hear you are back on track after the holiday. There is always that elephant in the room isn’t ther which we all try to avoid! I’m amazed how many lots of Pom you have had already. Can it be like a maintenance drug? Just keep knocking the MM back day at a time.

Hi glam Helen

Was wondering how you were getting on with your…[Read more]

I don’t think there has been a post on bone pain for a while so I am asking for advice.

Bone pain is becoming very debilitating for me now and is severely restricting my life. The worse pain is in my shoulder where I had lesions, and my back where the discs have deteriorated.

I am currently taking paracetamol, trampoline and…[Read more]

Does anyone know how high your creative levels are likely to be befor you get into renal failure? I an increasingly worried about my kidney function.

Best wishes to all.

Mavis

I am now 70! Was diagnosed nearly five years ago. Had one lot Of treatment CDT, four years ago and have been in remission since. I didn’t want a SCT for same reason as your mum. I have monthly ZOMETA and meds for bone pain, but don’t regret not pushing for SCT as not everyone gets a long remission.

Best wishes to you and your mum.

Mavis

So glad you are still getting to Greece and enjoying the beer in spite of everything. My advice to everyone on here would be “do it while you can.” I am not up to travelling to Luxembourg to see my daughter and family at the moment, but have pencilled in a visit for September as something to aim for. We can’t give up, can we.

Hope…[Read more]

Persistent infections do seem to be part of the MM package. Although in remission I get frequent bouts of cellulitis. However, have you thought of talking to one of the MUK nurses to ask what they think about a second opinion?

Best wishes.

Mavis

Welcome to the site you never wanted to join. As you read you will find that there is a great amount of research going on into a cure for MM. Treatment options have mushroomed since I was diagnosed nearly Five years ago so stay positive.

Apart from this Site the American site Myeloma Beacon is very good.

There is a Project called…[Read more]

Sorry to hear about your Dad’s pain. Has he seen the pain nurse? I find the palliative care nurse the most helpful person to help with my pain. She explained to me that we often need a mixture of pain killers. I am currently on paracetamol, Tramadol and ibruprofen. It just about keeps the pain manageable, but initially I was on oxycodine,…[Read more]

Welcome to the Site. Sorry to hear your SCT didn’t work for you. I think you would find Jetblack Living Blog really helpful as Jet has gone through a donner transplant and writes very helpfully about it. She is also in a similar age group to you. She doesn’t often post on here, but you can find her via your search engine. Although I…[Read more]

You have had a hard time. I do hope and pray all goes well with Ian’s SCT and brings the longed for long remission. Do let us know how things are going.

No, I haven’t heard anything from Jo. I have wondered what has happened to her. I used to value her sensitive posts.

I think folk disappear from here for two reasons: I. They are…[Read more]

Like Andy I haven’t had SCT and I am in remission following six lots of CDT. Everyone is different. I feel you have to weigh up quality of life against gains. I am in my fifth year post diagnosis.

Best wishes in your decision making.

Mavis

I just caught up with your post. You didn’t say what age you are. I was 65 at diagnosis, had a plasmacytoma removed from my spine then radiotherapy. 18 moths later I went on CDT and after six lots was in complete remission. I am now in my fifth year post diagnose. I didn’t have a SCT and seem to have done as well, if not better,…[Read more]

So sorry you have lost your Dad, and so soon after diagnosis.

Do be kind to yourself. It does take time to accept the reality of loss and then begin to gradually come to terms with your loss.

Love and best wishes.

Mavis

Just picked this up. Do hope Peter is back home and on the mend.

Love.

Mavis x

Good to hear from you again and to hear wedding went so well. Do try and find something else to look forward to!

Good luck with all your deliberating. I do hope that, like for Andy, they are able to pull something out of the bag for you. Aren’t there ant trials coming up for relapsed patients?

Love and best wishes.

Mavis xxx

Just wanted to send best wishes. Let us know how you get on. There’s still lots in the tool box to knock it back for you.

Love

Mavis

Sorry to have to welcome you to this site, if you know what I mean!

I’m not great on the intricate blood results, but must say, I can understand you suspecting Myeloma when I read your other symptoms and because your Dad had blood cancer. Was that Myeloma? It would be very helpful to you to have a word with one of the Specialist Nurses,…[Read more]

Just caught up with your good news. I can’t tell you how happy I am for you, and that after all this time they seem to have found something that works for you. Long may it continue.

You are so supportive of everyone else you deserve a break. And, YES, every day is a gift!

Best wishes.

Mavis