Hi Maureen
I have been mixing a huge heap of blueberries into gluten free porridge – it is delicious! I also take manuka honey, particularly if I'm feeling a bit run down. One thing that does concern me and I think that 'young' Tom may have alluded to this previously, is the potential danger for myeloma patients to over stimulatie the immune system by the use of supplements. However, you would have thought that simply eating foods, rather than taking pills and capsules, there shouldn't be a problem.
Best wishes
Tx
Many thanks for the links Dawn – I will certainly have a good look at these. I am familiar with Ben Goldacre, but haven't read anything of his. Now, if only we had a separate area to store all these useful links…….;-)
I did try the Budwig diet 'muesli', but decided it wasn't for me. Whilst on the face of it, it tasted fine, I couldn't get past the fact that I had just churned up a load of oil with cottage cheese and that in itself made me feel quite nauseous – bleuurrgh!!
Best wishes
Tx
Hi Eve
Apologies if i have got the wrong end of the stick. but you seem to be implying that as someone younger, I exist on ready meals and packets and am unaware of good nutrition. In fact, I base many of my meals on a 'traditional meat and two veg' and like you, cook most meals from scratch. I also ensure that we get our quota of vegetables and fruit every day. I don't need a booklet to tell me this. When I said that my daughter would eat better than I did, I meant it in the context of trying, where possible to eat more organically, where cost allows us to. Additionally, I do not allow her to drink fizzy drinks and certainly not 'diet' drinks. I grew up in the 70s and 80s. We ate well as a family ie. meals cooked from scratch. However, it was also the era where the 'diet and exercise' industry boomed. It was all about eating 'low fat meals'' and there were low calorie replacements to do this. Diet drinks, artificial sweetners, low fat food options became commonplace. As a young girl with a propensity to enjoy food a little too much, I began to rely on these to help control my weight. However, aspartame is evil and addictive. At work, I relied on diet coke to get me through the day in the way that others used coffee and tea. Many low calorie options today use aspartame. For example, low calorie 'no added sugar' squash. I do not buy these. Low fat options simply include more sugars and chemicals. I now buy full fat versions and use sparingly, for example, butter. This is what I meant in ensuring my daughter eats better than I did.
I would also find such a section useful! I read lots of scientific stuff that gets posted on the Myeloma Beacon as I feel it gives me an advantage when discussing issues with consultants. Also, I find the sharing of all the 'alternative' and self help information useful and interesting, even when I'm not necessarily convinced by particular aspects. Keeping such an area separate would provide people with a choice on whether to read it and hopefully discourage any potential negative comments and criticisms, which I personally, do not find helpful. Tx
Hi Mary
Definitely ask for sedation next time. I had a fairly traumatic first BMB at my local hospital – at a time when everything was bewildering. I think my doctor caught some nerves as it felt how I would imagine a series of electric shocks from my hip to my toes might! Even worse, I was in a room just off a packed waiting room. I don't think I'm a wimp, but I was pretty vocal in my pain. To my horror, as I walked out afterwards,I just knew from people's faces that everyone had just heard what had gone on.
My second BMB was at UCH. Yes, I was there from 10am until 3pm and had to wait around a lot, but the difference was startling. Minimal pain, which you forget about as you immediately fall asleep afterwards. It was a weird sensation – like having drunk several glasses of wine in quick succession. I am convinced I was awake the whole time, but my husband and the nurses are adamant that I was asleep for around 45 minutes immediately after it was finished!
Tracey x
Hi Vanessa
I really feel for you both – what a shitty thing to happen. Firstly, As Dai rightly points out, you should check out the ' redundancy' situation. Everyone with cancer is automatically considered as having a disability for the purposes of employment law. It is illegal to discriminate against the disabled in the workplace.
Secondly, I have BUPA cover as part of my job package (I have been signed off work since diagnosis in 2011). I've had chemo and stem cell harvest, but no SCT. I have monthly clinics at my local hospital, but also have consultations at UCH and the National Amyloidosis Centre at the Royal Free. All ths has been on the NHS. I have not used my private cover. I have mentioned on more than one occasion that I have private cover, but each time have been told that it would make no difference to my treatment and I don't believe it has so I'm happy to stick with the NHS.
Good luck!
Tracey
Hi Michele
Very interesting story about blueberries. I knew they had antioxidant properties, but this is something else! I'm not a big fan of blueberries, but I will certainly be eating them now – thanks for the heads-up!!
Tracey x
Hi Dawn
This is a subject that interests me greatly and i certainly don't think you are clutching at straws. My feeling is that cancer Is greatly increasing among 'younger' patients and I truly believe that environmental factors and diet are a contributory factor. Multiple myeloma, i believe, is an umbrella term for many subsets of a blood cancer, some of which may have occurred because an individual has, through external factors including diet made themselves more vulnerable.
Fortunately, I've not had to experience hospital food so far, but I've not been offered any nutritional advice whatsoever. When I was diagnosed in February 2011and started treatment, I went gluten free. For the last year, I've taken green tea supplements. One medic who I greatly respect, is James Berenson. I read an interview given by him in which he said if there was one piece of dietary advice he could give it would be to avoid aspartame and saccharine. I used to drink a ridiculous amount of diet coke and have taken artificial sweeteners in my tea for so many, many years. I have switched to Stevia sweeteners and have only the occasional diet coke. I also read a while back, in an Italian study that those patients who eat meat and drink alcohol, tend to do better. How fortunate that I am a huge carnivore and adore white wine!!!! 🙂
James Berenson, in a recent column also mentioned the Budwig diet. He basically said that it was definitely worth giving it a go to the extent of having cottage cheese, flaxseed oil and berries for lunch. I know there's more to it than that, but I'm giving it a go for my lunch from next week.
i reckon there's nothing to lose in trying alternative dietary strategies in conjunction with enjoying a little of what you fancy – I think it gives us some control. This also coincides with me looking at buying and eating more organic food. For me, it's a win-win situation. I have a 7 year old daughter. I want her to eat better than her mummy did.
T x
Hi Carol
I can understand your disappointment, but as everyone says, 3 weeks isn't long. I think they usually assess at the end of 3 cycles as to whether a change in drug regime is warranted. Like you I have Iga lambda light chain myeloma. I had 6 cycles of CTD ie thalidomide and achieved a complete response after 2 cycles. I have now been in complete response for 2 years and 3 months with no further treatment since CTD ended, save monthly zometa.
Best wishes
Tracey
.
Hi Clare
I have decided not to have a SCT just yet. I have been in Complete response to CTD for 2 years now – no PPs and light chains in normal range. I do have some stem cells on ice, but I was only able to harvest enough for one transplant.
Good luck to you and your mum whatever happens.
Tracey
Hi Rebecca
I was diagnosed just over 2 years ago, aged 42. My consultant recently told me that 'generally' as 'with all cancers', the younger you are, the more aggressive it tends to be. In my case, I had 6 cycles of CTD and achieved a complete response early on and have remained so ever since. I've had my stem cells harvested, but I am waiting to relapse before considering an SCT. I have the added complication of Amyloidosis, which can make an SCT more tricky and I have relied on this factor to push back on an SCT when I was told a year ago that 'the myeloma clone should be making a reappearance about now''.
I had to get very assertive, though. I didn't have a cytogenetic test on diagnosis, but was given one AFTER treatment when I had a second BMB. That came out normal and therefore, they were unable to get a result for any abnormal chromosomes, but of course, that doesn't mean I don't have any.
Tracey x
Hi Jacqui
I don't post much on here. But, I'm on my own tonight and have had a glass or two of wine and in my maudlin moments, often look on the site. Having done so tonight, I came across your post. I too have IgA myeloma. Actually, I have IgA lambda light chain myeloma. I also have Amyloidosis. Because of the Amyloidosis, SCT was not appropriate for me immediately after my frontline treatment because of potential problems to my kidneys.
I was diagnosed in February 2011 at the age of 42 and underwent 6 cycles of CTD. I was fortunate to achieve a complete response after only 2 cycles and have remained in remission since May 2011. I have recently had a stem cell harvest and am pencilled in for transplant in November.
I am under the care of my local haematologist, the National Amyloidosis Centre at the Royal Free and UCH. Nobody has ever told me that IgA type is more aggressive. I have been told that generally, my initial frontline treatment has an average remission of 12 months. I was told by my UCH consultant that the myeloma clone should be making a reappearance about now ( I finished my treatment in August 2011). My local haematologist has said that, in common with other cancers, myeloma in younger patients tends to be more aggressive than in older patients. However, he has never referred specifically to IgA and although he too said I may relapse now, he also said I may not!
I do look on the US Myeloma Beacon site and the impression I have gained over the last 18 months is that it is true that IgA was once thought to be more aggressive. However, nowadays, physicians are saying that's not strictly true. It's actually
down to the cytogenetics involved. However, statistically, I think that those with IgA do tend to feature more than other types to have the high risk chromosomal abnormalities but I don't think it necessarily follows that if you are IgA, you have a more aggressive subtype – at least that's what I'm hoping!
Good luck with the trial!
Tracey
*plerixafor* – sorry for the typo!
Hi Michele
I went gluten free when I started CTD in March 2011. I have myeloma and Amyloidosis, which affects my kidneys. Before I was diagnosed when I thought I had just a kidney problem, I had read how a gluten free diet could help. After being diagnosed with myeloma, I googled 'myeloma' and 'gluten' and found some articles which link the possibly of myeloma, in some cases, being an extreme form of gluten intolerance. 'Margaret's corner' a well known blog has also picked up on this. I have never mentioned my diet change to any of my doctors in case they think I some kind of quack. I already knew I had a wheat 'intolerance' so I decided to go gluten free the day I started chemo as I had nothing to lose.
I achieved a complete response after 2 cycles and have remained in remission ever since. Because of the amyloid, it was decided that an SCT was not appropriate at that time, but I have now been pencilled in for November. I have had a stem cell collection, but collected enough for only one transplant – I asked not to have the chemo priming and got by on just GCSF injections and one dose of pleriflexor.
I started taking green tea supplements about 2 months ago ( the tea is vile! ). I did buy some curcumin supplements, but have chickened out of taking them as I found out after buying them that they are not good if you have gallbladder problems and I do have some gallstones.
Who knows if going gluten free has made a difference, but I intend to stick with it. My consultant is now pushing me to move to transplant as soon as possible as he says now is the time my myeloma should be making a return, but I have to say, I'm not keen if I am still in remission at that time!
Tracey x
