[briananParticipant]

Hi

Many thanks to those who replied – they have certainly increased my understanding.

All the best

Brian

 

[briananParticipant]

Hi Peter

Many thanks for the link. SCT or no SCT? – a very difficult question! My feelings at the moment are that if an individual is in good health, then SCT (even though it is something of a ‘sledgehammer’) is marginally the better way to go.

Brian

[briananParticipant]

Hi Peter

Many thanks for the info. concerning the Mayo clinic study. It sounds encouraging!

I would be very grateful if you would send me web link.

Brian

 

[briananParticipant]

Hi Annette

Many thanks for your reply. Let’s hope your success with your treatment continues for many years!

I have discussed Revlimid with a number of people and it almost seems like a ‘wonder drug’. It’s a great pity that the NHS seems to be restricting its use for some new MM sufferers in some circumstances.

A basic question: on the weeks when you take Revlimid, do you take just one 7.5mg tablet?

I hesitate to ask a lady her age! I am a mature MM sufferer of 69; are you similarly mature or much younger?

Brian

 

[briananParticipant]

Hi Peter

<span style=”color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 12px; line-height: 16.08px; background-color: #f6f7f9;”>Many thanks for your thoughtful reply – it is very helpful. I saw my excellent consultant yesterday and we had a good discussion about the options. I am going to have a further round of chemo. so that enables me to put off the decision for a while and to do some further research. Although I am in reasonable health, I am 69 and therefore SCT may not be an option for me in the future. I do wonder about the accuracy/relevance of the often quoted statistics about the increased remission times that SCT can provide – particularly now that better drugs to support maintenance etc. have become available. (The ‘Catch 22’ of course is that the best drugs may not be available under the NHS.)</span>

By the way, I put the same question on the Myeloma UK Facebook page and received a number of replies.

All the best

Brian

[briananParticipant]

Hi all

The developing discussion on supplements is very interesting!  In the past I’ve never really believed in them but now seems a good time to start!  My view is that they are very unlikely to do any harm and they might just be of benefit.

I am taking a vitamin B12 supplement – I was told that the level of this vitamin in my blood was low but apparently not so low that I needed any treatment from my doctor. I am also taking a multivitamin supplement and I am going to start taking a Calcium + Vitamin D supplement.

I have a daily drink of Actimel – a yoghurt type liquid that you can buy in supermarkets. In addition to providing vitamins, the manufacturer claims that it will support the  ‘normal function of the immune system’.  (As I understand it, problems with the immune system can be the trigger for our condition to get started.)

I will certainly think about tumeric, aloe vera etc. – as mentioned by Helen and Chrissie.

The problem is that there are very many possible supplements and in practice there’s a limit to how many you could take. My consultant was rather dismissive of supplements in general but there does seem to be evidence that they can be effective.  I believe  taking supplements is certainly worth pursuing.  Google is good for getting a reasonably balanced view on the possible effectiveness of any supplement.

I would be very interested to know whether anyone’s doctor has specifically recommended any particular supplements.

Finally, I think it’s important to use a reputable source for any supplements; I use Boots where possible.

All the best

Brian

 

 

 

 

 

 

[briananParticipant]

Hi Cartdaw

I’m in a very similar position to you – although I’m ten years older .  I’ve recently had my second infusion of Bisphophanates and have experienced no side effects – so far.

I am now arranging to see another consultant who I believe can advise me on other possible treatments and trials.

Best of luck to you!

Brian

 

 

• This reply was modified 10 years, 1 month ago by  brianan.

[briananParticipant]

Hi

Many thanks to Karen, Andy and Mike for their very helpful replies. I feel that I am getting a better perspective on the condition and that has given me at least a glimmer of hope about the future!

I am very keen to investigate treatments that may/can be useful at the smouldering stage.  If I discover anything useful, I’ll start a new topic on the subject.

All the best

Brian

 

[briananParticipant]

Hi Jean

Many thanks for your encouraging reply.  I very much appreciate finding out about the experiences of others in my position.

Best wishes to you and Frank.

Brian

[briananParticipant]

Hi Robert and Martin

Many thanks for your replies and best wishes. It looks like we are in the same position – lots of tests but no symptoms for the moment. (Did not enjoy the bone marrow test!)

My haematologist recommended the infusions because they can – apparently – reduce the possibility of future bone damage.  I was not too keen on the idea (having read about possible side effects etc.) but, as I said, the first infusion went smoothly with no obvious side effects – so far!

I get the impression that there are lots of possible treatments – depending on the stage that the myeloma has reached.   I also suspect that different consultants have different opinions on what is best.  There is certainly a lot of useful information online. I probably will talk to another consultant, in London.

I’ll report back here on anything useful that I discover.

All the best

Brian

 

 

 

 

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