[WhamsterParticipant]

Hi my name is Peter, I was diagnosed with Myeloma on Friday, 26/0713 and I am currently taking dexamethasone in a high dose for four days, prior to starting chemo treatment on Friday 2nd August.
I am 57 and to be honest feeling totally in the dark I think my appointment on 2nd of August is for an assessment where I will probably get more information but at this moment in time next Friday seems a long way away. I just thought I may get some feedback from sufferers who have more experience.
Thanks for any responses in advance.
Whamster.

[eveParticipant]

Hi Peter

Well the dex is definitely keeping you awake:-) .welcome to this site or roller coaster as a lot of us call it.

I take it Friday was the first time you saw consultant,and he wants you to start treatment as soon as possible????.The dex is to give your body a boost before heavy drugs???.
Treatment differs in different places,it's my husband who has Myeloma,when he first saw the consultant he was admitted right away,but he was very ill,this was on a Friday,test done over weekend,discharged Monday,Thursday signed papers, blood test,started treatment on the next Friday.We live in SE Kent.it was a bit of a whirlwind,but that was 2 1/2 years ago!!!:-S

If you do not have an paper information on Myeloma please ring the help line on here Ellen or Maggi can send you some and help you.!!!
Take it one day at a time,try not to rush into anything without information,you are in for a long ride and when this happens,you just want to get on with it!,but it's worth stopping and considering your options,for example,are you in travelling distance of a bigger hospital that may have better trials!!!
Just a thought to be going on with.Eve

[WhamsterParticipant]

Hi eve,
Thanks for your reply, I have been in hospital for nearly two weeks as I was admitted with kidney problems on Monday 15th and was given the diagnosis for Myeloma on Friday 26th. And i was discharged from the renal unit on this date.I am in Leeds which has a very good cancer unit and I do not have my first appointment until Friday 2nd August but it just seems a lot to get my head around and as you can guess I am pretty hyper at the moment, I am on day 3 of steroids of a four day course and I just felt the more people I could speak to the more I might understand the process so thank you for any information, I also have booklets which I am trying to get my head around, seems like they have a lot of contact information which I will use.

Thanks again for your reply.
Peter.

[VickiParticipant]

Hi Peter

Welcome to the forum, this is a great boost. It's informative and also supportive. Before this site I read many and they were very scary, this one is factual.

My pattern Colin was diagnosed aged 56, having had no problems at all other than a bad back. He had a fracture in his vertebrae. He went through treatment of steroids (dex like you), cyclophosmahide and revlimid. Part of the myeloma x1 trial. He was brought into remission and then had a stem cell transplant last November, from which Ihe was to be considered in complete remission :-). So it's doable. The main problem he has is with the fracture in his back, causing real problems!

I hope your kidneys are ok now? Ask away on here Peter, I've spent the last12months doing that and it's helped so much!

Best of luck with your treatment 🙂

Vicki and Colin x

[eveParticipant]

Hi Peter

Well Leeds is good,there must be a Myeloma group,in such a big area. I know all this has hit you like a sledge hammer,but we have all been there so,you have come to the right place.

If I was you I would go into back publications,or the library on this site also look at the video s lots and lots of information there,it takes time to get your head round the medical jargon,but you will!!!
It sounds if you will be either having your first talk with myeloma team and signing papers as all these drugs are controlled drug.until you know what drug you are on,just try to learn as much as possible.

My husband was admitted with AKF so you are not alone,although only 4000 cases are diagnosed a year?,there are different types of myeloma but all treated the same,Slim has AgG bence jones myeloma..
Ask for results of bloods or get a diary from Myeloma UK,Ellen or Maggi can help you there,it helps to know your blood results,as it is an indication of your general health,and you can do little things about it to help yourself.

Any way I am sure people on here will be coming along and giving you a welcome and some sound advice,.Eve

[WhamsterParticipant]

Thanks very much for the information, I will try and get my head around things, I am finding it a very emotional time as of course is my partner Janine who is a lot younger than me (14 years). Goodness only knows what I would be like if the boot was on the other foot.
I think it is going to be a long slow process and unfortunately I am not the best patient( hate hospitals, Im actually diagnosed with white coat syndrome, that should be fun)
I do realise I am being offered the best possible treatment for the condition and I will follow all instructions to the letter and try and take in as much information as I can.
I watched a video on you tube saying no two people are the same when it comes to Myeloma so I understand we can all have different symptoms, the video on the home page for newcomers is very good and quite upbeat about the advances in treatment and I am taking this all on board bit by bit.
Thanks everyone for taking the time to reply with all your advice
Peter.

[johnandjunediamondParticipant]

hi peter, my wife and i are recent also,unfotunatley your world is about to be turned upside down and inside out,but it's good you found the wonderfull folk on here to help guide you. ask your partner to try and take note's for you as to the question's you would like answered,information overload will confuse you and prevent you asking important question's when you see the consultant's. so write it down,eat healthy,and drink plenty,best wishe's june & john

[WhamsterParticipant]

Thanks Johnandjune,
Will try and follow as much advice as I am given, from all sources, it just seems a big help to be able to speak to people who are going through or have gone through the same thing as myself and all this within 3 days of been told I have an illness I had never heard of before. Life has a way of standing up and slapping you in the face just when you thought you were the one in control!!!!

Thanks again for all your replies.
Peter.

[tonyfParticipant]

Hi Peter, welcome to the place none of us want to be at!
Sounds as though you have had an early diagnosis, that's good!
I had a quick diagnosis, before anything really untoward started happening, I was put onto the Myeloma XI drug trial for 5 months, eventually had a stem cell transplant, now 6 months later I am in remission.
It's a difficult journey at times, sometimes one step forward two steps back,
The people on this site are great and will answer any questions you may have.
Get in touch with the folk at Myeloma UK they will furnish you with all sorts of info, try to avoid getting onto to many other web sites, it'll scare the life out of you!
Good luck.
Regards Tony F

[CarolsymonsParticipant]

Peter I am also newly diagnosed should be week 7 of cyclophosphamide, dexamethasone an thalidomide but just out o hospital with chest and kidney infections so have had a week of cancer drugs while antibiotics do their thing. One important thing I have gleaned from this site is that you should be drinking at least 3 litres of water daily, especially as you had kidney involvement. Also I know everyone is different but I had horrendous withdrawal symptoms from the 4 day 40 mg of dex with pain everywhere and to can cramps so beware! Doc now has me on a tapering dose of 10, 5 then 2 tablets which help

Carol

[WhamsterParticipant]

Thank you all for all your insights and advice, I am trying to take all the different info in and I still have not had my first treatment meeting(Friday 2nd) I am on my 3rd day of 40 mg of dex which I was told could be quite a downer so keeping an eye on my emotions.
Going to County Durham tomorrow to see my Mam & Dad face to face, they are both in their 80's so they have taken it hard, but I so need to be with them if only for a few hours.
My wife Janine is looking after me like a gold watch, and god only knows what I would be like without her support and love.
As for the journey ahead I am going to give it all I can to try and bring some control back into my life.
Thanks again for your advice and info.
Peter.

[tomParticipant]

Hi Peter

Well welcome 🙂 its a long and at times a hard road this mm road to remission, but its a doable I had my treatment in 2009 CTD then SCT and I sit here in remission and drug free 🙂

Good Luck on your road and don't forget to listen to your body if it hints at rest then rest

Tom Onwards and Upwards x

[johnandjunediamondParticipant]

dont try and take it all in,it will crash your brain!!….each thing you think of …you come back on here and look for the answer and make a note of it.if you dont find it here get janine to write it down for the doctor to answer,also watch all the myloma tv vid's on here 🙂

[dickbParticipant]

Hi there, now you're part of the club you will be learning so much about MM and so will your partner. It will take time if ever before you come to terms with it and just how nasty it can be. Like everything there are those worse off and those better off than you but we are all in this together.

I assume you will be researching into MM as much as possible and possibly getting information overload, you may also be very tearful and emotional just like we were but please remember you are not alone. There is help and support out there, there are new practices and treatments being developed but above all, a number of people have gone through it and are in remission which means you can as well.

Just take things one step at a time, you will go backwards as well but just keep plugging away and you will get there.

[andygParticipant]

Hi Peter
I would like to add my welcome to you for joining the forum. None of use you choose to be here but here we all are. We're a happy bunch believe it or not though we all have are moments of frustration and disappointment. You will find the group on this forum very supportive and full of suggestions to help you through your MM journey.
No two people's journey or treatments are identical so our journeys are personal we all react differently to the drugs. Some get through with little or no side effects whilst others have bad side effects and have to switch treatment. Some get a great response with initial treatment getting to SCT very quickly other have to battle longer to get there. Some, rare case, like me don't get to SCT at all.
My initial tips to you would be drink plenty of water, as been already mentioned 3litres a day minimum, regularly check your temp, twice a day minimum and ring the hospital for temps above 37.5 and below 36, before you go to see your consultant write down ALL the questions running through you head and write down the answers because you will forget 75% of everything said. Take along someone with you so you can discuss the meeting with them afterwards. They may hear differently the answers to your questions. It's an awful lot to take in.
When you first start treatment you will feel unwell and maybe get some infections, this is normal because the drugs they give you are very strong and not nice :-S this is why monitoring your temp is very important as your immunity will be suppressed and you may need antibiotics.
I hope I haven't frightened you but there is a lot to learn and you need to be aware that you need to look after yourself differently from now on and it is scary at first but as time passes it will get easier.
Oh another thing avoid people with coughs and sneezes – easier said than done but important.
Hmmmm I guess I've rambled on a bit, sorry, I'm on my steroids and I tend to go on a bit when on them.

Anyway way I wish you good luck with your treatment and journey with MM. I hope you get a wonderful Christmas present of a SCT that leads to a long and healthy remission.

Every day is a gift.
Make sure you unwrap it

All the best Andy

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