[ivanwarwickParticipant]

I'm 52 and have found out 4 days ago I got Myeloma. I believe I'm still in shock, the problem is I feel fine at the moment the only symptoms I have are swollen legs and tiredness / lack of energy. I have broke the news to my partner, daughter 23, son 20, mum and sister which was a very difficult thing to do. I have cried along with them all, we are a close family. I'm not sure what to expect next, I'm going to see the doctor in a couple of days to ask some questions, I have a long list ready. I suppose I feel so good at the moment I cant imagine that I'm going to get very sick soon. I am scared and worried for my family I don't want to be a burden on them.

[ElizellenParticipant]

I am so sorry you have had to join our group of MM warriors, Ivan.

Welcome to the best place on the www to find accurate information and interact with others with similar problems.

Hopefully as you have been diagnosed before you have suffered any bone problems you will be treated in time to stop any degeneration such as for some of us was the first signs of this wretched disease.

We have many members here who have been able to lead a fairly active life post-diagnosis, so I hope you remain relatively healthy and active for many years to come.

Luv
Eliz
XX
X

[BADGERParticipant]

Hello Ivan

so sorry you have had to join this group,you will be in shock and it will take a while to come to terms with it I dont think anyone truly does, as for crying I also have a close family we all did a lot of that.
This site is so valuable for help and information and the Myeloma uk help line is brilliant there is always a professional person on the line to talk you through your problems keep in touch and let us know how you get on
Love Jo;-)

[HelenParticipant]

Dear Ivan
I was diagnosed in February and also was fairly fit, bit anaemic and tired so the shock was overwhelming, even checked that it was my name on all the sample tubes! I've been at work all through the induction chemo, some good days some bad days and everything in-between, I'm off sick now as i head off for my stem cell transplant next month and while I know that will be a tough stage I can say that I feel better now than I have done for about 5 years.
List of questions is good idea and this site is lovely, I only discovered it about a week ago when I was looking for info on side effects and have had sensible and caring advice

Helen

[ivanwarwickParticipant]

Thanks for all your reply?s its much appreciated, it?s good to know that I?m not alone. I?m going to the doctors tomorrow with the list of questions and my partner Cathy is coming with me, I think 4 ears are better than 2 in this instance. Like you Helen I?m thinking they may have the wrong name on the test tubes. I went into hospital for tests about a week ago and they did the bone marrow biopsy which is where they were able to give me the diagnoses. I came out of the hospital with three tablets Furosemide for the liquid dispersion, Simvastatin for the cloistral and Ramipril they told me was to reduce the production of protein, however the advice slip within only talks about reducing blood pressure and heart issues etc.
Helen you said that you have been better now than you have done for about 5 years. Does that mean you were actually slowly going downhill these past 5 years and the treatment has given you back your energy levels?
I thank you all so much for the welcome
Regards
Ivan

[brochoParticipant]

Hi Ivan sorry you have had to join our merry little band but you will find lots of help and support on here even if it is only to have a rant at myeloma and all it brings with it!! You are wise to take your partner in for your consultation , in the beginning there is so much that will be new to you, I often used to ask my husband what had been said regarding one thing or another The good news is it does get easier as your treatment gets underway and the initial shock wears off. I remember only too well feeling that life was going to be awful and full of life or death moments , dashing to hospital every five minutes !!The reality is nowhere near as dramatic thanks to the developments in treatment and all the new drugsplus careful monitoring , any changes are picked up early and treament can begin before any major damage is done As Eliz has said there is every chance you will fit and active for many yearsto come! Of course there are times when treatment can make you feel weak and lousy , the trick is to learn to listen to your body and if you are shattered then rest, there is rarely any chore that cant be put off for another day Good luck and remember there are lots of lovely people on here who are right with you best wishes Bridget

[MinParticipant]

Hi Ivan,
Welcome to the exclusive little mm club.
I am married to mm sufferer. I recognise the names of your interim medication. Ferusemide will give you back your previously slim legs.LOL provided you drink plenty of liquids. Statin will bring your cholesterol down . It goes up because your kidneys are leaking protein and for some reason this causes high cholesterol. I remember the Dr telling us why but forget now what he said. Finally the Ramipril the extra water in your swollen legs causes high blood pressure, so we were told and he topped that lot off with warfarin to ensure the fat legs didn't give him dvt's
YOu don't mention any MM drugs. is this because they have decided not to treat it yet? or do you have to wait and go back to a clinic for blood results. Light chain results in some hospitals can take a week to ten days as they send them away to Birmingham.
Many people are found early and not treated directly for the mm until there are more symptoms .
I imagine all of this is mind blowing, but in a very short time you will become familiar with the terms and the symptoms. You will roughly understand the terms relating to counts…. blood counts para proteins etc.
Life will change somewhat but it will carry on with different set of priorities.
Read the old posts on here and some of the info leaflets and before you know it you will be and old hand.
Most people who have MM are diagnosed late, and most people reflect that they have been tired for some time but thought it was old age or extra work making them tired. With the benefit of hindsight and the newly acquired knowledge they realize that they have been smouldering for a while and undiagnosed. Its an insidious disease if left unchecked and early diagnosis prevents further damage.
Enough of the learning lecture for now and sorry to go on but good luck on the journey
Min

[eveParticipant]

Hi Ivan
Just picked up on your post,welcome to the journey,may i say it is a massive learning curve,try just to take one day at a time:-)
I cannot add much more than has been said except to say,thing will get a lot better,this site will help to give you insight,and advice there are people ahead of you on this journey.
3000 people in uk a year and 20000 people world wide every year. It is a rarer cancer,but there are world trials going on at this moment Myeloma X1 is the latest.My husband is on this one.If you have a chance I would consider it.:-D
Good Luck ,Eve

[HelenParticipant]

Hi Ivan
Hope you got on ok today, not too shell shocked with all the information thrown at you.
In reply to the energy question, I feel as though I have more energy though I'm only just starting to try and get fitter again since all the induction therapy stopped.
I thought i was slowing down with arthritis or the menopause, hot sweats, joint pain, dry skin, anaemia, tired, not wanting to do anything, irritable and achey all the time, up 4 or 5 times a night to pee, not sleeping properly in between and getting even more tired. I now see how difficult it is to tease out the disease from such non descript symptoms but i'm definitely much improved, I can wake in the morning after only being up once of twice and get up feeling that I don't need another hour in bed, so I hope it stays like this for a long time. At the moment I'm just siezing every opportunity to do things.
I too am in the myeloma xi trial and hope it is the best plan for me, give it thought if you get offered it.
Helen

[ElizellenParticipant]

Hi again, Ivan.
Wishing you all the best for today's appointment!

One thing I have bought that really helps when I go to see various doctors is a small digital voice recorder, no bigger than a memory stick which records everything said and can be downloaded onto a computer or IPod etc for later confirmation of all the words used and plans for future treatment.

Too late for today I know but the company I bought from ship within a day or so and have them on sale at present
http://www.gizoo.co.uk/Products/PCGaming/PCGadgets/USBDigitalVoiceRecorder.htm

[img]http://www.gizoo.co.uk/Images/Products/USBDigitalVoiceRecorder/Additional/sm-3-usbvoicerecorder.jpg[/img]

[scott9Participant]

Hi Ivan

Sorry to get your bad news. It brought back memories of last Sept when I got my diagnosis. I'd never even heard of myeloma at that stage. As everyone has said though, you soon become an expert on all the terminology. I've just finished my course of treatment. I have opted out of the stem cell transplant as my kidneys are wrecked and the mortality rate is higher. It also sounds horrible and I've put up with enough over the last 9 months. Quality of life is important and I want to enjoy the rest of the summer as best as I can.

Good luck for your journey.

Scott

[mhnevillParticipant]

Hello Ivan

Just caught your post. Sorry about the diagnosis. Do hope you have had a good hospital visit today and felt comfortable with the Consultant.

If they said you should just "wait and see" with regular check ups, don't feel they are fobbing you off. For some folk this is the way ahead and the months without drastic treatment are to be valued.

On the other hand, as others have said, if you are advised to go down the treatment route straight away there are plenty of folk on the site to give you advice and support.

Very best wishes to you and all the family as you all adjust to this thing called MM being in your midst.

Mavis

[ivanwarwickParticipant]

It was a 3 hour consultancy where we talked about everything on my list and she was so impressed by my health that she asked if I wanted to start treatment right away as I was in good condition to fight it. So guess what I'm about to start treatment in a couple of hours for now. I have all the tablets and injections to start my chemotherapy in one big bag. Its a simple process I take 10 cyclophosphamide chemo tablets at once along with a 4 day course of steroids and a thalidomide tablet. I was surprised about the thalidomide, I thought it was dangerous to unborn babies, I know it once was given as a drug for morning sickness and had disastrous results. You are probably all used to this drug but I was surprised. The chemo drug is only 10 mild tablets today and then another 10 in a weeks time and another 10 in another week etc. I go back in 4 weeks for tests to see how things are going. If all goes well I will continue for 6 months on this chemo and then intend to do a steam-cell harvest and transplant. I also have to inject myself with a small needle into the stomach to prevent blood clots. Its 5.50 in the morning Cathy and I have been up a while reading all about these drugs before I actually start. I am so nervous but I want to thank Mavis, Scott, Elizellen, Helen, Eve, Min, Brocho and Badger you have made this a lot easier for me.
Ivan

[tomParticipant]

Hi Ivan
Sorry am late in replying but a warm welcome to this great band of folk, but sorry you had to join 🙁

Good Luck on your treatment I also (in feb 2009) started my treatment CDT and that was starting with about 50 pills a day 🙁 but i done it with the stem cell harvest and the stem cell transplan in december 2009 and her I am back at work (still light duties though) doing 40 hours a week 🙂 put my weight back on (with a vengance lol)

My Advice will be the same as others rest and sleep when your body tells you, dont fight it with the Gosh I need to get the garden done honest that will wait 🙂 and one day at a time.

Good Luck

Tom "Onwards and Upwards" 🙂

[eveParticipant]

Hi Ivan
Eve again,your on ctd,remember to take DEX in the morning,and Thalidomide last thing of a night ,but I am sure they warned you about that!!! some people get mood swings on DEX someone coined the phase Dexattude,the wife will get use to it:-P
It will not take long to adjust to everything,a chart is helpful some hospitals supply them or like us make your own,remember not to rub your injection site as you will bruise,any worries you can use this site for answers.some one is always ahead of you,and you in your turn will be able to help someone behind you.:-)
keep in touch Eve

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