[CAZ1Participant]

Hi everyone-again like most I'm new to this and out of my comfort zone. I have been living with the underlying myeloma for 2 years since being diagnosed with a single plasmacytoma in my spine treated with radiotherapy and steroids.I have been monitored by a superb consultant at Torbay who knows me and my body response pretty well by now.My family and I have been getting on with enjoying life and not thinking too much about what I had and I knew was in the background-until I suddenly slipped and shattered my tibial plateau in May needing surgery and weeks in plaster or with a leg brace. I have slowly got back to walking without crutches or a stick (lots of self imposed physio and support) and have just come back from seeing our newest grandson in New Zealand to be told that the myeloma has become active and now I need chemo starting next week. I will be using oral CTD plus Pamidronate IV for the osteoporosis. Has anyone any good ideas/tips for diet to improve appetite or to support the treatment. I 'should' know as a health professional for many years but that doesn't help sometimes! Also have friends who have had other forms of cancer but not myeloma so would welcome the support from you all.

[tomParticipant]

Hi Caz

Sorry you had to join us 🙁 but we are a great bunch of folk 😀

I was on CDT in 2009 then followed by a SCT in Dec 09 and still doing great 😎 Good to hear you have a great Consultant that always helps.

Good Luck in your Journey with us.

Love

Tom "Onwards and Upwards" xx

[mhnevillParticipant]

Hi Caz

Sorry you have had to join this "merry" band. I was interested to hear of your journey thus far as I also was diagnosed following a plasmacytoma and RT. Was the break the thing that heralded your MM progression? Had your paraprotein levels jumped up? I am currently having zometa monthly (starting last month) before that I was on bonefos tablets for my bones, apart from that I am just being monitored.

I do hope that your new CDT treatment puts you into a full remission quickly. How great that you were able to make the trip to NZ.

All very best wishes.

Mavis

[PerkymiteParticipant]

Hi Caz, Support you will get in the bucket load from this bunch of real nice people. You have no doubt explored the site and found lots of good UP TO DATE information, be wary of the information on the WWB.

I was diagnosed July 2009, I broke my neck getting out of bed. They found a whopping great tumour had eaten my 4th vertebrae, my head is held up with titanium rods, a bit like scaffolding around a steeple but internally. Radiotherapy dealt with the tumour. My Consultant informed me that she had looked at my medical history and that I had had Myeloma for two years, it had just not been picked up!! I had my SCT in Dec 09 and I have been going strong ever since. Paraprotien 2.1 at last count (Sep 11).

I wish you the best of luck.

Kindest regards ? Vasbyte

David

[HelenParticipant]

Hi Caz
Welcome
Re diet- as good as possible seems the best, if you feel like eating, some do some don't. On the dexamethasone days you may find you can't stop eating! You don't say if you are heading for SCT! If you are you need to keep as fit as possible as it can be a bit of an ordeal and you may need all your reserves.
I found myself listening to my body a lot, a bit like when you are pregnant, sometimes you crave the stuff you really need.
Helen

[brochoParticipant]

Hi Caz and welcometo club none of us wanted to join. I was diagnosed 5 years ago and I have had the full range of treatment so far! On being diagnosed I had to have spinal reconstruction as 3 vertebrae were destroyed This was followed by CDT and SCT , which gave me 18 months partial remissionWhen I relapsed with a new tumour on my spine I went on the Myeloma X Trial which was not a walk in the park unfortunately ! Since then I have been on Velcade which only worked for a few months before another tumour appeared Then it was Revlimid again it only worked for a short while before yet another tumour came along , this one was the most painful but thankfully radiotherapy has got rid of it . I am about to start Bendamustine next week and hopefully this will be effective for longer! The issue of keeping your appetite is fairly common and I find it difficult too but I have learnt to eat small amounts rather than a big meal and not to get too stressed over it Dex is the problem for me as soon as I start on it my taste is affected, on the other hand being on Dex for such a long time has meant a weight gain too Sorry but I cant think of any useful tips at present , I will come back when my little brain is working!! I am sure you will get lots of responses from others too . Take care and good luck Bridget

[CAZ1Participant]

Thanks for all the lovely replies. We're not sure of the progression-whether the breaking my leg caused my free light chains to double or vica versa. I was told that with my initial diagnosis of the plasmacytoms at T4 that I had probably had it for 2 years before it had started causing symptoms-I was threatened with the scaffolding but luckily didn't need. The only problem i have at present is that i cannot exercise as before my leg break but will persevere with walking (can't get into my local swimmimg pool due to stupid design of steps).
Seeing my specialist nurse this afternoon and having bone marrow 'done' so will know more about treatment and the future from that.
My family's war cry is the Haka (maori war chant that the All Blacks sing before matches) so we'll all be doing that together!!
I've learnt to keep optimistic and to share the journey rather than keeping it secret helps enormously—but it does take courage
Thank you my new friends

[BADGERParticipant]

Hello Caz

welcome to the group sorry you have had to join but you will find so many new friends here ready to give you help and advise and dont forget Myeloma uk's help line they are so good. The eating bit is difficult I ate only what I fancied that way I at least ate something as a child when not well it was always lemonade and Hienz tomato soup and that does the trick now when nothing else temps me. I had CDT and premidrinate but not had a SCT as major renal failure I was diagnosed in Jan 2009 but looking back I think I had it for at least 18 months before diagnosis as odd thing kept going wrong like colds that lasted for weeks not days and was very short of energy tired all the time I put it down to age at the time I was 60
Try to keep well
Love Jo

[GillParticipant]

Sorry you had to join us but welcome. There is not a great deal that I can add to the advice you have had from others. Eat when you can and eat everything you fancy.

HEY Pig out sometimes 🙂

Gill xx

PS what does HAKA mean in English

[HelenParticipant]

Hi Caz
Is your family from New Zealand?
Helen

[eveParticipant]

Hi Caz
Just to say welcome,envy your trip to nz,we should have being going this year have a daughter in Mapua.We will get there again was my husband gets remission.8-)

Once you know how much damage to bones there is,you will soon learn to adjust your strength will come back just takes a long time,some people sail through treatment other people have problems,infections and side effects,nothing you cannot get through.
Listen to your body,watch for all the signs of illness and do not be afraid to phone hospital no matter what time it is.I found that the hardest call,feel you are wasting peoples time
Post on here and people can help and support you.:-)

I wish you a good journey Eve

[CAZ1Participant]

Hi Eve
We are lucky to have a daughter in Hamilton and it was a special occasion (always to NZ).I hope you get to Mapua as planned.
Sorry haven't replied earlier but have just started my CTD and coming to terms with the numbers of lyctic lesions in my spine/ head. Thanks for all your helpful advice. I have cards and emergency numbers everywhere-but it is still all daunting.
I am continuing to do normal family things but just more tired. We'll get through it- have to, am planning the next NZ trip!
Carol

[CAZ1Participant]

Hi Helen,
We're not from NZ, just had a daughter who fell in love with the country and met her husband there!
Carol

[CAZ1Participant]

I've just realised what SCT is – and yes that is planned after 4 cycles of CTD ( it's surprising how quickly the acronyms creep in! ) and providing that I have a good response. Sounds as thought that is when all the hardwork starts -so a long way to go!

HAKA means challenge! This is what myeloma is !!
Caro

[HelenParticipant]

Hi Caro
My sister is in whangaparoa near Aukland I always planned to go but never got. I'm just 10 weeks post SCT and beginning to get some energy back. One thing I am planning is my trip to NZ next year i hope.
Helen

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