[veggieperrinParticipant]

Hi all,
On my first cycle at the moment and have made a conscious effort to improve my diet which has always been good but with reduced appetite I have been grazing on the wrong things a bit.
Wanted to promote this book that I found at the library, very informative and with good recipes.

‘The Living Well With Cancer Cookbook: An Essential Guide to Nutrition, Lifestyle and Health’ Fran Warde and Catherine Zabilowicz

Good luck everyone
Dave

[Anonymous]

Hi Dave, thank you for the book recommendation..a very positive thing to do is try and eat well. I hope your first treatment is going as ok as it can.. I’m a newcomer myself and should be starting my first cycle soon of VCD. I think I’m still classed as Smouldering myeloma ( freelight chains Lambda ) and this is to be a pre-emptive strike against it!! I do seem to have other issues so whether I have some other underlying aspect of the disease..who knows. It’s a bit scary but good to be able to share and help one another.. BFN Dee X.

[veggieperrinParticipant]

Good luck with the treatment Dee, just had my 4th Velcade and the side effects havn’t been two bad except I’ve developed leaking odema in my lower legs which is a real pain.
They think I need to get more protein but I’m seeing Renal tomorrow so hopefully will get it sorted.
best wishes
Dave

[Anonymous]

Hi, Dave(and dee)
I have just joined the forum today, I have finished my first line of treatment after six months and am in plateau and recovering physically and emotionally from it all.
As regards diet, while on chemo I focused on smaller meals more often as the steroids played havoc with my innards as each cycle progressed, my priority was keeping my weight up as I was quite thin at the point of diagnosis. I did find going easy on the sugar helped quite a lot as it’s a bad as salt for me in causing odema. My myeloma took my kidneys out and I’m on permanent dialysis which is most inconvenient to say the least !!!
Any questions to someone who has come out the other side with sense of humour intact welcome.
Best wishes
Cassidy

[Anonymous]

Hi there Cassidy and hopefully Dave can see this too.. Just read this before turning in and your sense of humour has put a smile on my face! Hope the treatment has done the trick Cassidy at least the side effects should be abating. Dave no doubt will be in the thick of it! Me too soon I expect but still waiting to start treatment. I’m in a limbo really but just got to be patient. So how long since your diagnosis Cassidy? Mine is probs still classed as Smouldering but they are looking for underlying Amyeloid also. Sending a smile and positive thoughts to you both..Dee.

[Anonymous]

Hi dee,
I am 9 months post diagnosis and have recovered from the shock of it all and am at peace with the situation.
Smouldering myeloma is a very annoying element of myeloma as you are either put on watch and wait or watch and worry! As I like to call it, or you have to start treatment when you don’t actually feel ill, it’s a all a massive pain in the rear end dont you think!
However the good news is the treatments are the best they have ever been and new therapies are being developed all the time so there is lots of hope for the future.
the biggest problem is getting diagnosed early on, so you are ahead of the game and hopefully this will mean you dodge the bullet of the worst aspects of what myeloma can do.
So good luck with the treatment if and when it starts and I am here to answer any questions you might have, and to keep your spirits up if things get tough, a sense of humour is compulsory where myeloma is concerned.
Best wishes
Cassidy

[Anonymous]

..thank you your reply is just what I wanted to hear and I’ll keep in touch if I may. I too am sort of at peace with it all ( hard work getting to this though ) something has grown in my spirit/psyche to balance the anguish/pain.Do you mind me asking what type of Myeloma you have? At first I refused to find anything about it but then realised that knowledge was power and I needed to know what it was all about..no good burying one’s head in the sand, though I can understand this.Speak again..hope you feel ok..Dee.

[Anonymous]

Hi dee,
I have a type of myeloma that circulates in the peripheral blood, it has not caused me any bone damage but has a penchant for some of your internal organs, hence the damage to my kidneys. If I tell you what it is called you will probably google it and I will probably never hear from you again as it doesn’t make for pretty reading, I have found in the past that fellow myeloma patients see me as their worst nightmare and run a mile when they find out about my form of the disease, it’s sad but understandable, but I’m not a very good liar, so I’ve got primary plasma cell leukemia myeloma, I don’t feel sorry for myself and have a good quality of life and just want to be excepted as a normal myeloma patient.
I am a let’s face things head on type of person, I made a conscious decision to research the disease, it was very upsetting at the time but I don’t regret it as I feel I would have just ruminated on it otherwise. Also if you are going to be your best advocate for your treatment you need to be reasonably well informed. I have personally found the relationship with my haematologist quite perfunctory and have felt isolated at times. This is why I am reaching out to fellow patients at the beginning of their journey because I feel there is a gap in the system for support that needs to be filled, and just want to do my little bit to help.
So please keep in touch and don’t be put off by my situation as all myeloma patients are unique and my disease is so rare you’ve got more chance of winning the lottery than geting it yourself !
Best wishes
Cassidy

[Anonymous]

I have heard of it Cassidy but do not know anything about it. I agree we need to know our stuff if we are indeed our own advocates…I’ve toughened up as I think you have by the sounds of it and you have a great attitude. My Haemotologist is very good..everyone has only good to say about him so I’m lucky. I will know a little more soon I hope when I get the results of my CT scan..it’s good to talk to someone you know you’re not going to frighten! 🙂..BFN Dee.

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