[HarmonyParticipant]

Hi Brian,

I have now been smouldering for a year and like you when I was first diagnosed I was searching to take control and feel that I am doing something positive to help myself. I’m under ‘Watch and Wait’ just like you – my next appointment is on Monday. I was 40 when I was diagnosed. Every 4 months I see my consultant and around this time the nightmares and anxiety kick in. Overall now, I get on with life and try to create happy moments but underneath, I am quite angry and bitter but also defiant- I defy this thing and carry on with life.

I now take 2 tablespoons of aloe vera daily, one selenium supplement every other day, drink green tea 2 or 3 times daily, have linseed and sunflower seeds every morning -and the truth is I don’t know if it’s making a damn bit of difference but I’m trying. I have 2 young children so I have an obligation to give everything a try.

We must pack up our troubles in our old kit bags and carry on!

[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

 

 

 

 

 

 

[cartdawParticipant]

hi brian  my name is dawn I think iv mentioned earlier that I was diagnosed with smouldering myloma in april im 57. I am with what appears to be a very good team of haematologists at chesterfield royal. and appear to be quite knowledgeable re myloma.   I asked multi-vits and they said it wouldn’t hurt re iron count and well=being etc. but water is the one that seems to be mentioned all the time for kidney function. I would be interested if anyone has any proven alternative therapy at this stage.     I notice that some people don’t appear very happy with their consultant but I think all hospitals share knowledge re all their myloma patients via video link with other hospitals. asking advice re treatments etc.  I know chesterfield does.

[cartdawParticipant]

hi chrissie, im dawn. I too become anxious around hospital visits and I have to be seen every 8 weeks as although im smouldering my abnormal cell count from my bone biopsy was high. 70%.  although im well with no effects so far.  I would be interested how you get on with the aloe vera etc.  will try anything.  i feel im living my life in 8 week blocks although im trying to be positive and just getting on with it.

[cartdawParticipant]

hi its dawn. does anyone else feel tired with smouldering myloma although my iron  blood count is normal i feel extremely tired.  I work two twelve hour shifts per week as a midwife so busy but more tired than usual.

[HarmonyParticipant]

Hi Dawn,

I do feel tired at times but as a working mum, I’ve felt tired since my kids were born. I find it hard to know if it’s the myeloma causing me tiredness or simply the pace of life! Your life sounds busy too so it is hard to know for certain, isn’t it?

Living in 8 or 16 week blocks is so cruel, isn’t it? Just before the appointment, I always feel vulnerable and fragile.

Aloe vera tastes vile but like you said, I’ll try anything – I’d probably drink my own pee if someone said that it could kill myeloma cells! What’s encouraging is that I read in the recent myeloma uk mag that a japanese study has found that green t (if you’re not receiving treatment) kills myeloma cells.

[tonyfParticipant]

Hi all, please don’t take green tea, read the recent issue of the myeloma news. It has an article about green tea and turmeric.
Regards
Tony F

[robert0439Participant]

Morning Tony,

Can you post a copy of the article?

Regards,

Robert

[HarmonyParticipant]

Hi Tony,

I read the article and as far as I understand, green tea only needs to b.e avoided if the myeloma is active and treatment is being received. There is no harm in drinking it if you are smouldering- indeed, there could be a lot of good since the Japanese study found that it kills myeloma cells

[tonyfParticipant]

Robert the article is in the autumn issue of myeloma maters.
Regards
Tony F

[alicenorthParticipant]

Hi Helen
I’ve just read your post about your diagnosis of asymptomatic myeloma rather than MGUS. I’m not a doctor, but If your paraprotein level is 8g/l rather than d/l, I’m struggling to understand why you are not MGUS, in view of your other blood results. Have you asked for a second opinion? Maybe talk to your GP about it?

Best wishes
Alice

[Anonymous]

Hi Alice,

thanks for for the reply I will be getting a second opinion . I have emailed myeloma nurse and our local group in Leeds both have been so helpful. As I have finally got my xray results back and they are all clear but that is only thanks to our GP who accessed the hospital website as I had then done on 22 October and they sent me an appointment letter on 24 October to come and see them to discuss results on the 12 November another three weeks away. My family and I could take no more worrying as this has now been going on since last week in August the consultant at Dewsbury does one test then seems to wait then does another test I wondered if funding was an issue not patient care. It has been the most horrible experience to get to this point and the way they have spoken to us so matter of fact and had no time for us in the appointments has been strange. So I am going to see a new consultant in Leeds who hopefully will now put my mind at ease over what I have and how we move forward.

i must say this forum is absolutely fantastic I love how everyone tells it as it is, which is what you need to know so you can face it.

Helen

[Anonymous]

Hi everyone, saw Professor Gorden Cook last Tuesday in Leeds and he was a lovely kind patient man who explained exactly where I am and why I am asympotmatic and not MGUS, the reason is ..although all blood tests results are good and no CRAB symptoms it’s due to flow crytometry in my bone marrow, so the good news is only 2%plasma cells but of those 2% …92% are myeloma cells due to CD56+/CD19-  but that’s not at 95% yet…hope I havent confused you all, but taking aside the fact we have an illness we would much rather we didn’t have ..it is really marvellous the technology that is now in place to try and work out best treatment for each one of us.

I am now going to been seen at a different hospital with a new consultant someone who understands myeloma and doesn’t terrify the living day lights out of me and my family like the one in Dewsbury .. My opening words to Professor Cook were “please tell me I won’t die before Xmas ” he looked alittle taken aback but that was how she had made me feel I hope someone is able to take time to show her the error of her ways . No one should feel like that ever.

 

hope everyone has a happy weekend hugs helen

[ellenModerator]

Good afternoon Tony, thank you for your contributions to this forum.

Can I clarify that the article in Myeloma Matters – Autumn 2014 states that Green Tea should only be avoided when on treatment with Velcade as it may interfere with the way it works.

All the best

Ellen

• This reply was modified 9 years, 6 months ago by  ellen.

[docmikeParticipant]

hi helen
I think your posts explaining why you have smouldering mm and not mgus illustrates the complexity of myeloma and why there is understandble confusion in establishing the criteria of each diagnosis ‘modern technology (flow cytometry) however is starting to fill in the gaps in the knowledge of the above .Unfortunately the complexity makes it difficult?impossible to explain in one outpatient visit.But clearly you had bad experience which left you with a negative impression rather than that not all smoulderers progress(sometimes despite adverse criteria) and after 10 years the risk falls to mgus risks .better treatments, longer survival .young patients do better and I beleive a cure is on the horizon (and I v been loking at the medical literature on MM for 6 years )
I hope you continue to smoulder forever .
Mike

• This reply was modified 9 years, 6 months ago by  docmike.

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