[compass007Participant]

Hi I am a 50 year old male and have just been diagnosed with Mutiple Myeloma it all started some 6-8 months ago when I went to hospital and had to have fluid drained off my right lung, I then had some xrays and a scan where they found a tumour on my right kidney at this point I was told I had cancer that had probably spread to the lung, however after a lung biopsy and various other biopsies and blood tests I was actually told I was clear…..and that the tumour on the kidney was probably a syst…this would be checked again in 4 months, I must admit at this stage I was not convinced and new I had some kind of serious condition…4 months later another scan and blood tests turns out I have MM also some bone lessions on about 2 ribs and the kidney condition is a Bosniak 111, I know also have a plasmo cell tumour behind my right eye. I started Chemo about a week ago, they have started me on Velcade and chemo tablets, Ive had 2 sessions of this so far but the last time I went the wanted to up the chemo to CHOP because of the tumour behind the right eye…Im in good spirits at the moment and no real pain (im sure that will change) ive had no major side effects yet from the chemo but again its early days….I have 50% plasmo cells in my bone marrow so I know its high fully intend to live my life day by day while I can, and I supose like most here take it one day at a time….Would be greatful for any thoughts or advice.

[annlynnParticipant]

well welcome to the site no one really wants to be part of but unfortunately we are . Not much i can say otger than you will come in to contact here with people who. can relate to you all our situations are diffrent. but the same if you see what i mean. we often have diffrent beginning but with the same outcome. MM. i was diagnosed through very bad back pain that was put down to kidney infection a nd all sorts of things untilb broken vertabras were found on closser investigation. six. months. of. chemo then sct diagnosed jan 2014 straight after xmas transplant auggust in remmision now for 16 months feeling. ok most of the time but know its always hovering but. results are improving. constantly with new treatments. so be positive. keep strong. an c.f. if your not sure ask on here there a great bunch someone will know the answer. best wishes. annlynne

[compass007Participant]

Thank-you for your reply I am generally an up beat person and this may sound a bit wierd but after the last 8 months Ive had not really knowing….the diagnosis has given me some sort of relief/closer perhaps not the right words….however I do fully understand the situation and how it can affect one person completely different to another, well I will take it a step at a time and live every day as best I can, will just have to see how things unfold.

Good Luck and Kind Regards

 

[davidainsdaleParticipant]

Hi, sorry to hear that you have been diagnosed with MM. Hope your treatment goes well.

The long delay between onset of symptoms and final diagnosis seems to be very common, 6 months in my case due to back pain and fatigue.

There is plenty of support,information and help available for myeloma patients. The Myeloma nurses on the helpline are really helpful if you have any queries and there may also be a local support group in your area.

I found that talking to other patients who had had similar experiences and treatment to be very beneficial.

Hope this helps.

David S

[andygParticipant]

Hi Leslie,

Welcome to the forum. Taking each day at a time is definitely the way to go. Live in the present because you can’t change yesterday and worrying about tomorrow spoils today. Saw that quote somewhere and it’s very true.

I was like you at diagnosis at last I knew what was going on. It was a relief to know and devastating at the same time. It took eighteen months from first symptom to diagnosis for me.

The first advice I’d give you is keep well hydrated, two to three litres a day everyday mainly clear liquids. Tea, coffee and juices OK in moderation but are no substitute for water etc. Alcohol is permitted but must be supplemented with more hydrating fluids as alcohol is a diuretic as is tea and coffee to a lesser extent. The reason being is myeloma cells can and do bloke kidneys causing ultimately kidney failure. Some people complain they can’t drink water and find it hard to keep up the intake but it’s VITALY important to keep those kidneys flushed. Dehydration caused by not drinking enough water or drinking too many diuretic drinks thickens the blood and can lead to visit to the renal clinic.

Renal failure is the second most dangerous problem for myeloma patients the most dangerous problem is infections. So the second piece of advice is get a digital thermometer and use it regularly and any time you feel a bit “off”. At my unit I have to ring in if my temperature goes above 37.4 for more than a couple of hours and that usually means I get free bed and meals for a few nights on the NHS whilst I’m on intravenous antibiotics. I know it’s not the same protocol at other hospitals but high temperatures should not be ignored by you or the medics. I myself am just recovering from a close call in ICU with pneumonia and my temperature at admission was 37.8 If in doubt about anything ring your specialist nurse or your day unit/ward for advice. Don’t wait it can be a very delay.

Last little bit of advice – for now – don’t google everything for advice because most is out of date and much is just plain wrong! Stick to MyelomaUK website and the American site Myeloma Beacon I find them very useful sources of info. If you’re on Facebook there is several of us from here on a myeloma group on there and it’s a good place to get an urgent question answered though sometimes the advice can be a little misleading. The Facebook group is called  Uk Myeloma Support Group.

Every day is a gift.

Andy

[compass007Participant]

Thanks for your advise very helpful, sorry for the late reply as I am back in hospital now, and typing from an I phone so please excuse grammar and spelling, having an enhanced course of chemo that has gone a little wrong, when I came in the did a central line procedure that went fine and I was to have 2 x 24hrs packs of chemo after the first 24hrs pack the central line breached (quite serious) they rushed an antidote by taxi from another hospital and all seems well at the moment they are going to put a Hickman line in Tuesday and continue the chemo all being well …. I never expected it to be easy and I’m still in very good spirits and what will be will be ….one day at a time…

[mhnevillParticipant]

Hi Compass ( do you have a name?!!)

Just caught up with all your posts. Welcome to the site from me. I’m rather an old stager now at over 5 years post diagnosis and currently in remission though I have lots of problems with bone pain and my kidneys are compromised.

You seem to be remarkably positive in spite of everything. I do find this makes a difference and as Andy says, having the attitude that every day is a gift.

Hope your current spell in hospital puts you right for the rest of your treatment programme.

Very best wishes.

Mavis

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