This topic contains 25 replies, has 15 voices, and was last updated by 
tmc 12 years, 3 months ago.
Hi all.
Time to report back from my question time with my consultant. First of all I've got to thank Dai as we used a lot of his suggestions.
Steph asked the questions and noted the answers.
The headlines of the meeting were that I have the bog standard version multiple myeloma. Unfortunately my reaction to the treatment todate is far from standard and as far as my consultant is concerned I'm unique in her experience! My MM has proven resistant to every treatment administered so far. So SCT is not a possibility at this time and a auto sct may never be possible. Both my siblings proved not to be a match. Whilst we were there she called Prof Jackson at Newcastle RVI, with whom she had be liaising with about my case. He made a suggestion of adding cyclophosphamide to my Rev/Dex regime. He's also agreed to see me in his clinic. Which is good news as he's a national expert in the MM field.
My consultant has told us my MM is in the refractory stage.
So everything considered there wasn't any good news other than I'm stable at the moment and my regular blood test was ok.
The fight goes on.
Andy and Steph
Hi Andy and Steph
How do you feel about it all!!!! has it answered some questions.!!! Do you feel that everyone is trying there best for you!!!.I think over all you must be pleased even if you are unique.
Well you might not see it at this moment,but you have made the big boys sit up and take notice,
You have your answers and you know were you stand,and now you have the top man on your side,am I correct in saying refractory is used in the sense of waiting to see what going to happen next,stable but see if it goes up or down!!!!
I hope you mind is in a state of ease as I started the ball rolling,not my intention just could not understand treatments and time limits.Eve
Dear Andy and Steph,
A tough meeting for you both I bet but I am sure you are glad you have asked these questions and it's good to know your Doc's are taking things seriously and doing their best for you.
Hold on and stay strong, I have met a chap who had refractory MM and is now 12 years on and is still holding his own.
I hope you are still feeling well,
Love Mari x
Hi Andy
Well I'll see you in the waiting room at the Freeman then, Tuesday mornings. I had Rev, Dex and cyclophos for my induction therapy, hope it works for you.
Love Helen
Hi Andy/Steph,
the answers you got seem to have raised a few more questions in themselves and that can't be a bad thing in itself.
Although the Consultant says she has never come across this before I'm sure it can't be totally unique and someone somewhere will have seen it before. One thing is for sure you've got the best brains on the case in Prof Jackson. I have the same MM as yourself but in the main I've responded to the treatments very well but of course as we all know we are all very different in ourselves and MM is an individual disease that has to be tackled in lots of different ways in all kinds of patients. It's all about finding the right combination of drugs which will be why he wants to add Cyclophosphamide to the party so lets hope it works for you. Am I right in saying that your BMB was ok as I remember you having yours same day as I did and mine showed 35% MM activity although my PP's at the time had doubled from 5.68-10.98 and went on to 29.98 at the start of the latest treatment. The Consultant was more concerned at the activity in the Bone Marrow and less about the PP's although it is an early signal that something may be going wrong. I have to say it is a puzzler but as I've already said you have the best minds on it and I do hope they can crack it for you.
Take care both of you and do keep us all up to speed with the latest news.
All the best mate…Keith&Sue.
Hi Eve, Mari and Helen.
It was a tough consult but on reflection a good one. There wasn't much about my condition she revealed that we didn't already suspect but it was good? to have our suspicions confirmed. Now we know what we are up against and can channel our energies to the fight. It will be good to have a second opinion and some new input. Refractory is the stage after the remitting relapsing stage – I think. The main thing at the moment is to keep my pp's stable or reducing. I am at the moment feeling ok if it wasn't for my back and the way the drugs make me feel sometimes I wouldn't know I had this dreaded disease. Oh nearly forgot whilst trawling the Internet I came across a report on cases like mine where the drugs struggled to have an effect and the report said it could be down to genetics. I mentioned this to my consultant and she seemed to agree but said it wasn't something generally tested for in the UK but suggested I raise it with Prof Jackson. We'll see you for a coffee Helen if I get a Tuesday morning appointment.
All the best
Andy & Steph
Hi Keith & Sue.
My original BMB showed my marrow was packed with MM but my last one showed I had little bone marrow left! In the little holes where it was supposed to reside but around the outside there was MM cells. So even though there was less bad cells I didn't have many good cells. The one question i didnt ask was which was the more important indicator PP's or BMB I suspect it would be BMB. Guess I should start another question list 😉 My last MRI showed no further bone damage or lesions. Which is good. I'm looking forward to seeing Prof Jackson and getting his input and suggestions.
All the best.
Andy & Steph
Hi Andy
Myeloma clinic, always a Tuesday, multi disciplinary, ask as you get to the desk to see Prof Jackson, be prepared to wait a long time sometimes. Parking is horrible, get dropped at the door by someone athletic enough to walk back over the site when they eventually find a space. Coffee shop is ok though let us know when you go.
Love Helen
Hi And
Sorry things aren't moving on treatment wise. We will all keep our fingers crossed that the professor can come up with something.
One thing occurs to me. You say you are still having back pain. Have you seen the pain specialist? Maybe you need a higher daily dose of morphine. Here they take the line that you shouldn't have pain and will work towards that. Sometimes, I think, that can get lost in the battle over PP numbers and the like.
We will keep rooting for you. Hold onto what Marie says about 12 years! We all need to hear those good news stories.
Best wishes to you and Steph.
Mavis x
Hi Andy and steph,
Just catching up. We bit the bullet and went away to Cornwall for two days, weather rubbish but good to get away.
At least you know where you are with the mm now, and it sounds like you have the top man on your case. Mavis is right re the back pain, it took ages to get the right does for Colin, they sent us to the palliative care team, which freaked us out to begin with, however they did the trick and his back pain is well under control.
I really hope the top man can get your pps to move so that you can go for SCT.
All the best Vickii and Colin x
Hi Andy sorry seem to have missed this post :-S
You seem to be doing Ok M8 I do hope the Prof can help in some way
Tom "Onwards and Upwards" x
Keep going Andy, I just have this feeling that you are going to crack it my friend.
Kindest regards – Vasbyte
David
Dear Andy and Steph
sorry the meds are not working for you lets hope the new regime works and you will get a bit of relief fingers crossed for you
Love Jo x
Hi Andy
Its good that you are getting referred to the top man. My understanding is that the bone marrow biopsy is the determining factor in relation to myeloma. Unbeknown to me until quite recently I was genetically tested (I dont know when) and found to have two chromosomal abnormalities which affect my prognosis, monosomy 13 which is considered to be a poor prognostic marker and translocation 11/14 which is considered to be a good one (however the bad outweighs the good). My consultant says that my treatment would have been the same regardless and that they dont know enough about what these abnormalities mean which is why they dont routinely tell patients. So I guess I am saying that the genetic side is still quite a new area in Myeloma. When I proved to be allergic to Thalidomide they put me on PAD (Velcade, Doxurubicin and Dex) which is considered to be quite an aggressive treatment, you could ask the prof about that.
Good luck with the meeting
Wendy
Hi Andy
Sorry your having such a poor time of it. Letes hope that your meeting goes well with Dr Jackson.
Just a suggestions but I bought a back support belt (only the cheap 6.99 version) from ebay which has helped me a great deal. It has little magnets for the small of your back but I´m really not sure what they are there for. Anyway, it certainly has eased my constant backache and I haven´t had to take any oromorph since I started wearing it. Anyway, at that price it might be worth a go.
Best of luck over the coming weeks and fingers crossed that they find the right treatment for you – at least you know you have the best on your case now.
Love Carol xxxx
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