[DaiCroParticipant]

Hi David,

The radiotherapy in 18 months or so is not such a long shot as it first seems.

Say you get 12 to 18 months from the Velcade (it's usually a pre-cursor to a 2nd SCT but gives you a fair remission on its own merits) by that time, as you get ready for the next step to Revlimid (and Dex of course) the newly licensed drug therapies from the US of A – Kyprolis (Carfilzomib) and Pomalyst (Pomalidomide) should both be up and running as available treatments, both running with Revlimid and Dex. Early indications look really good and 18 to 24 months look like being the median.:-)

So there could be 3 years on offer (perhaps more as further results come in from trials and early treatments – I wouldn't be surprised at 36 months from the combinations) which I think would put MM as the safer bet to run with as the main treatment, with the radiotherapy to keep the prostrate at bay. Who knows what else might be being prepared or even licensed in those 3 years? 😀

I'm still hoping to get a shot at Kyprolis (I missed the trial by 7 days:-P)… it was licensed last June so it can't be far off being licensed in Europe and the UK… I hope!

Regards and best wishes for whatever course you choose.8-)

Dai.

[teds31Participant]

1st Mothas, I see what you mean, Diverticulitis is treatable with antibiotics but the thing is Diverticular disease which is when the inner bowel wall pushes through the outer wall is permanent
and the only treatment is to cut out the offending bit.
Dia, You seem to have the worst of both worlds and it shows that one problem can have an effect on others and treatment for each one requires different dept talking to each other which I'm not as yet sure they do.Ted.

[PerkymiteParticipant]

You are right Ted about communication. I noted that, if a little surprised, the Haematologist consultant asked me what went on at the radiotherapy consultation. I had expected him to know! He did not disagree with the course I had taken but on the other hand he did not say he agreed, which is slightly odd looking back on it. I think I will bring it up at my next consultation, but it might not be with him. At the Beacon Centre Taunton Somerset we see a random selection of consultants, it could be anyone of 5 (I think) people. Sometimes, it can be a little disconcerting to see them hastily reading the notes the last one left. Again, sometimes, I get the feeling I am not so much being cared for as passed along a chain.

Kindest regards ? Vasbyte

David

[teds31Participant]

I'm at St.James at Leeds, and we also have a huge cancer dept ,there are always several docs there and it seems just chance which one you get, they are very nice to talk to and I have asked several people whether they all know what the others do and it seems that it just depends on who it is and how busy they are. At the moment with all the problems I have with different consultants I just wonder if one dept talks to others.Ted.
[b]Just carry on regardless[/b].

[teds31Participant]

Hi All Hope you don't mind me coming back to this topic, but I have been back to the MM clinic today and all seems well so far. The information I managed to get regarding the immune system and other treatments such as operations, they said that the immune system is effected by the MM though it does vary according to the severity of the MM and the treatment you are having as treatment can lower your immunity, not just to operations but to all infections.
In my case I did find out that though my PP level is stable at around 14 as it has been for years, my Light Chains are on an upward trend :-S . The strange part of all this is that they have started to use a different scale to measure the level of the Light Chains and they now don't know if its increasing or not until they get a further reading in 8 weeks time to compare. Now does that sound strange or is it just me. Ted.

[eveParticipant]

Hi Ted

It is not strange,it sounds if they are checking your Kappa Light chains,they send a blood sample off takes a while for results to come back,then I'm a few months they will do the same again,this gives them extra knowledge to see how the Myeloma is advancing,it is just another marker to manage the stage of Myeloma.

Hope that explains it you can ask for a copy!!! The doctor can point out the important numbers.Eve

[teds31Participant]

Hi Eve what I meant was the scale used to measure the light chains has been changed. My light chains changed from 500 to about 900, which made them think things were happening, then the Lab changed the scales they use to measure the light chains, and the next reading was 200, I was quite happy with that until they said the scales had changed and they are now waiting for the next reading in 8 weeks to see if the light chains have gone up on the new scale. This is Leeds I don't know if all Labs have changed or not. Ted

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