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 Trials have worked for you after you have move on from Pom……..
I am approaching seven years since diagnosis. My PP levels are now gradually rising again, but have only reached 5. I asked what next treatment would be if they began to rise sharply and the Dr. Replied that he wouldn’t like to say as there are so many new drugs being tried.
I continue on four weekly something infusions. For me this is the wonder drug. I has a nasty fall while staying at my daughter’s in Luxembourg. They have oceans of ceramic tiles. I needed three solid ambulance men to get me up, but no broken bones. It is a miracle because five years ago my Consultant was extremely worried about the state of my bones.
Aren’t we all lucky to be alive. Yes, quality of life isn’t always great, but we are able to achieve some of our goals.
Maureen, I do hope things go well for Ian. I think he is brave going for a second SCT.
Love and blessings to you all.
Mavis x
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 Consultants are more thorough than others. I usually have to badger to get them others get them routinely.
All best wishes.
Mavis
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 gift”.
I had a bit of a shock at my last Consultant visit. A different Doctor as per usual. An hour and a half late in, the last ten minutes because, according to the nurse, he was reading my notes!
I go in and he says your pp level has gone up slightly again. I say “again” I thought it was still not showing last time. He said it had been 2 then and was now 4, but don’t worry as you don’t need any treatment yet. I said my surprise was that I hadn’t been told of the rise last time. His bald reply “well you know there is no cure!” Not the NHS’s finest moment for bedside manor. I sometimes think I know more about this than the Junior Doctors.
Anyway, that’s me. Hopefully only a very slow rise. I shall ask to speak to the Specialist Nurse next time I go. My bone pain has been much worse since I had to come off Zometa infusions. I am wondering if rise in PPs is also related to this.
As Consultant said rightly, I did know it would return, but let’s face it, we all hope to beat the odds. You certainly are.
Do take care. I need to hear from time to time that you are still battling on.
Love.
Mavis x
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 and now my pp level is slowly reoccurring having been undetectable for over three years. I have always felt that, for me, the implied bonus of anti myeloma factor to the infusions was at play.
Going every four weeks did seem an inconvenience, but it was certainly worth while. I’d advise anyone to accept it gratefully.
Best wishes.
Mavis
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 when I read early Info Sheets.
I feel very grateful to still be here and still in remission, but I am really suffering with bone pain and with internal soreness which I think is caused by the Gabapentin I take for the pain.
We still can’t think of going away, but we are both going to work at getting as fit as we can now the nicer weather has come.
Let’s aim for ten year hurdle and prove the gloomy pundits wrong.
Lots of love.
Mavis xxxx
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 on six monthly Consultant appointments. Now on two to three monthly visits.
The key is don’t worry if you feel well and if you are at hospital every four weeks you can always raise ant worries then.
Go well!
Best wishes.
Mavis
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
Hi Alex
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 expected.
Best wishes.
Mavis
Hi Compass ( do you have a name?!!)
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 makes a difference and as Andy says, having the attitude that every day is a gift.
Hope your current spell in hospital puts you right for the rest of your treatment programme.
Very best wishes.
Mavis
Hi Geoff
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 to help you through? I take comfort in believing that death isn’t the end and that we are gathered into he endless love of God.
Glad your own results continue to improve. Hope you manage to store up some good memories in this additional time you have been given.
Best wishes.
Mavis
Hi Bob
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 November my pp still showed as undetectable.
I am five year post diagnosis and had cdt over three and a half years ago.
Of course, remission is always the elephant in the room. I have thought, if/when I relapse I might have a conversation about trying CDT again, perhaps ar lower doses.
These decisions are so difficult aren’t they, but isn’t it encouraging there are so many more choices even from when I was diagnosed.
I have lost so many friends on this Site that it is good to hear from someone who is a survivor.
All best wishes.
Mavis
Dear Vicky
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
