Hi Jared

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]

Hi Maureen

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]

Hi john

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

Hi Mervyn

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]

Dear Jeff

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

Hi Val

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

Love.

Mavis x

Hi Helen

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

Hi Karen

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

Hi Eva

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]

Hi Andy

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

Hi Katie

Sorry your mum has had to join this elite club! However, as everyone says, don’t panic. Myeloma isn’t a walk in the park, but nor is it the immediate death threat it used to be.

Your asked about para protein levels before treatment. I know 30 is bandied around as the marker for the start of treatment, but my Consultant said it is the…[Read more]

Hi

Welcome to the Forum from me too. The diagnosis of MM is hard as most of us had never heard of it and the fact that there is no “cure” is disconcerting.

I am just on 70, having been diagnosed over four years ago. I have always taken the line of having as little treatment as possible. After a year I had six rounds of CDT which brought my…[Read more]

Hi Susie

I’m glad for you that the end of your treatment is in sight and, who knows, you may yet reach undetectable PP by the end.

I am now nearly three years post CDT and still doing well, apart from bone pain. I am so glad I didn’t go down the SCt route. I have had no maintenance drugs, just four weekly ZOMETA infusions. I saw my Consultant…[Read more]

Hi Peter

I didn’t actually loose my voice when I was on CDT, but I certainly noticed a difference. My voice got scratcher and not as powerful. Something I really noticed because I use my voice in preaching and was worried it wouldn’t improve. However, the good news is, it gradually retuned to normal when I finished treatment.

Do hope you…[Read more]

Hi Skinner

So sorry to hear how things have progressed so quickly for your Dad. I just hope you can have some peaceful days this Christmas to leave you with some good memories.

Love and prayers.

Mavis

Hi Skinner

Sorry your Dad has been diagnosed with Myeloma. It would probably better if you start a new thread on “newcomers” so you get more responses.

Take a deep breathe. There is life after diagnosis. I am four years post diagnosis and counting.

Very best wishes to you and your Dad.

Mavis

Hi Helen

Apart from serious mobility problems I am doing well. Still in remission though keeping my fingers crossed for my Consultant appointment in December when PP results will be available.

I’m with Andy about “quality of life” issues. I remember dear Dia saying once, that he regretted his SCT as it had only bought him ten months remission…[Read more]

Dear Rosie

So sorry to hear of Chris’s death. So tragic it came so quickly and leaving your son so young.

I will pray that you are given the strength to cope at this aweful time.

Much love.

Mavis x

Hi Helen

I’m glad you have popped in again, but so sorry to hear about your Dad. However it is great news that you have actually retired! I do hope and pray it is a long retirement in spite of MM. So glad you have your daughter’s wedding to look forward to.

Go well with the treatment.

Lot of love.

Mavis xxxx

Hi K

Your Paraprotein isn’t too high so you may not start on treatment yet.

You should ask if your blood counts are normal as these affect your ability to ward off infection. Also if there are any problems with your kidneys.

MUK has a free treatment diary that gives good information about blood results. You can get one by ringing the Help…[Read more]