[mhnevillParticipant]

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 fighting their own fight so hard they haven’t the emotional energy to post, or ii. They are in a goo dish place and don’t always want to engage with MM issues apart from there own. I find myself in this second category from time to time, then a post will draw me back in!

I am grateful to you regular contributors of the moment who are so vital, especially to new comers.

I was glad to read Helen’s posts but couldn’t find the thread to reply.

Sorry to userp your post, John. Hopefully you will be able to help others when you are further down the road.

Blessings to all.

Mavis

[mhnevillParticipant]

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

[mhnevillParticipant]

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, than some who did. I continue to have monthly Zometa infusions for my bones.

I suppose it just goes to prove that MM is a very individual disease.

Best wishes to you in your decision making.

Mavis

[mhnevillParticipant]

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

[mhnevillParticipant]

Hi Val

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

Love.

Mavis x

[mhnevillParticipant]

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

[mhnevillParticipant]

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

[mhnevillParticipant]

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, on the Help Line, tomorrow. They are bang up to date with all info and are very friendly.

I do hope they give you a proper diagnosis soon if only so you know what you are dealing with.

One good thing is that the outlook for the treatment of Myeloma is progressing in leaps and bounds.

By the way, there is an under 50s Strand to this Site. Not that I’ve been on it. Too old!

Keep in touch you will find lots of support on here.

Best wishes.

Mavis

[mhnevillParticipant]

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

[mhnevillParticipant]

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 rate of the increase rather than just the figures they take into account.

I didn’t have a SCT but am doing well over 4 years post diagnosis. I am just on 70. I had six rounds of CDT and since then have had four weekly infusions of ZOMETA for bone strengthening.

Best wishes to your Mum. Do keep asking questions. everyone on here would say knowledge is power.

Mavis x

[mhnevillParticipant]

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 Paraprotein down to undetectable. I now just have a four weekly infusion of ZOMETA to strengthen my bones.

I guess treatment will rather depend how your Dad’s Myeloma presents itself I.e. Whether by bone problems or fatigue and infections. Everyone is different.

I would just say, be hopeful, there is life after a Myeloma diagnosis and things are moving forward at quite a pace.

Very best wishes to you and your Dad.

Mavis

[mhnevillParticipant]

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 last week and he agrees with me that the infusions have no doubt had an anti myeloma effect on me as well as keeping breaks at bay.

I am just coming up to my 70th which I didn’t expect to see when I was diagnosed in 2010.

All best wishes to you.

Love Mavis x

[mhnevillParticipant]

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 experience the same recovery. CDT isn’t a walk in the park and has lots of strange side effects. Loosing the taste for many foods was another I had, plus shingles. Watch out for that. However after 6 cycles My PP was undetectable and has remained so for over two years and counting, so worth it!

All best wishes.

Mavis

[mhnevillParticipant]

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

[mhnevillParticipant]

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

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