[DaiCroParticipant]

Hi Scott,

Welcome to the forum, I truly wish you were not here… but you are so we had best make the most of it.:-)

Before you know it you will be welcoming other new MM'rs, offering advice and relaying your experiences of all things medical & domestic connected to this bloody awful disease.:-( But you will generally find more smiles than grimaces on here. 😀

You have contracted MM at an exciting time in terms of treatment development and understanding of how the disease works… at the present MM is categorised as a terminal disease… to be categorised as a chronic disease you have to have more patients reaching their 10 year survival rate than not… and we are getting very close to that mark (especially in the USA, the leading light in developments, pharmaceuticals and treatment programmes – we are generally 1 year to 18 months behind.8-) 😛 😎

Good luck with the CDT… let's hope it gets you primed for your Stem Cell Transplant (SCT) and then a long remission. Keep things in perspective, set your goals and get your mantra… there are a few of us who hold fast to our mantras and spread them around a bit.:-)

David (Perkymite) [b]'Vasbyte'[/b] (South African, meaning [b]'Bite Hard!'[/b]
Tom [b]'Upwards & Onwards' [/b](and our resident voice of good cheer and Vodka).
And me, Dai [b]'Whatever It Takes'.[/b]

Use any or all of them (I do) or find something that suits you down to the ground.8-)

Welcome… and remember to ask anything you want… embarrassment is null and void around here.;-)

Dai.

[janwParticipant]

Hi Scott,

You have certainly had a very eventful three months leading up to the time of your diagnosis with myeloma. Unfortunately with this cancer, it appears to take many months of visiting doctors and specialists before the final diagnosis of myeloma. I should think you are extremely relieved to find out what was causing your back pain, but totally overwhelmed following your unexpected diagnosis of cancer and the amount of drugs which you have to take during your cycles of treatment.

It does get less emotional once you have had time find out more information about the cancer, gradually accept and adjust to the situation, go through the treatment and hopefully start a long period of remission. However, as the patient I think we tend under estimate the stress on our partners, children, relatives and friends. My husband found it difficult to support and care for me whilst going through treatment, when at the same time he had to take on most of the household chores, deal with family issues and go to work on a full time basis. As other forum members have advised, you do need to talk to each other and help each other through this stage of your lives.

My two sons were about to complete their AS and A level exams when I was diagnosed with myeloma in March 2010, aged 52 and undergoing 4 cycles of CDT from April to July. Both my husband and myself thought they were handling the situation well, but it took us ages to realise both suffered with their studies and exams due to their inability to concentrate or focus on their revision in April/May whilst worrying about my health. With hindsight, I wish I had discussed my cancer earlier with their teachers at school in order that they could be aware of the family issues and put into place regular monitoring/support to identify any difficulties with their academic progress and/or any behavioural issues.

The side effects of CDT can start to kick in after a few cycles, but remember the majority are short lived and will disappear once you have completed treatment. Just listen to your body and rest,relax or sleep more if you feel you need to take things easy.

Regards Jan

[willjames2Participant]

Dai,

Thanks for the post and the encouragement. Your right, in time hopefully I will be offering advice however at the moment I know very little about Myeloma so feel like I can't contribute as of yet.

I need to get onto my 'Mantra' as I'm sure it will help me going forward. I'll get back to you when it's decided.

Regards

Scott 🙂

[willjames2Participant]

Jan,

Thanks for the post. We have discussed with our Kids Teachers and they have assured us they will look out for any behaviour that is out of the ordinary. Both are good kids so we shouldn't have any issues however you never know how it will affect them longer term. They have been great so far however I still look well so the only issue they see is my lack of mobility caused by my bad back.

The info on the possible future side effects is useful and I wondered myself when they may kick in.

Regards

Scott:-)

[lezastarkeyParticipant]

Hi there

new to this forum but here goes…

my husband Phil was diagnosed with MM just over a week ago. His symptoms seem to mirror yours. He is a firefighter and broke a run last year. Suffered infections he could not shake off to. He also sneezed and thought he pulled his shoulder out and has physio etc.

He is on steroids at the moment and starts his chemo on 28/2/14 and opting for TEAMM trial to.

Emotions are all over the place but having read various comments on this forum I for one am feeling more positive 🙂

take care

Leza

[robkarenParticipant]

Hi all

just been reading throught these posts having been dignosed 2 days ago, ( forgive spellings etc, started steriods today got mushy brain syndrome lol) Im 48 have had type 2 diabeties for 2 years (no problems tho, untill started on steriods)
got 3 collapsed vertebrea starting with back pain 3 months ago, early management on anti inflams, diazepam and tramadol worked well,, christmas day pain has increased steady since then, ussual waste of time trips to A&E (should know better spent 20 years as paramedic)

not to sure what to say how to feel etc wife keeping evrything together as they always seem to do,

have a 15 year old kid learning difficulties,/ autistic, struggling to get him to understand the illness treatments and prognisis, so if anyone can point me the right direction for help with this will be very gratefull..

sorry for the rant,,, posts will get more coherant

thanks Rob & Karen

[eaglesham23Participant]

Hello,

 

I am 48 years old and was diagnosed with Myeloma in February. I am on my second cycle of treatment and am finding it very difficult. I am constantly dizzy and get frequent headaches. The hospital say it is a result of the steroids have cut the number I take but I don’t feel it has made any difference. I do not know if this is normal or if this is what I should expect but I find it very challenging and difficult. Any advice or suggestions would be greatly appreciated.

[rebeccaRParticipant]

Hi, Sorry you Have joined us and no-one has responded to you yet – I think you may be better posting your queries in either Newcomers or Treatment – to be fair I think few people look/post under this category much – particularly if treatment related as age tends to be irrelevant. Would be helpful to say what treatment plan you are on etc as you’ll find lots of people who will share their experiences on specific treatments and give you the heads up on what to expect in further cycles. I was only on dex once a week 40mg and did find that the body adjusted better to it after time (or I had?) but I only had the ususual insomnia/hyperness and quite weepy after it. If you search for steroids under treatment you should get some idea on how it affected others and perhaps it affects people differently also dependant on what other drugs they are on? I was diagnosed at 51yrs in 11m2012 and still struggle to come to terms with it and how it turns your life upside down even tho’ to the “outside” world I have managed to live my life as near as (before) normal as possible. I have just had my SCT at Xmas and feel I am totally back to normal now (played 12 hours tennis last week!) look so well and no-one would suspect what I’ve been through but still mentally it dominates my life even tho’ I am living my life “as normal” now. Good luck and please try reposting as people on the same treatment plan as you will generously share their experiences and this knowledge will help.
Stay strong, Rebecca

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