[sarahlouiseParticipant]

Hi all, well my mum who is 65 was diagnosed with myeloma about 6 months ago, and on Monday was told by her consultant that he thinks it may be time to start her treatment. She has got to have blood tests over the next fortnight, consultants are having a case meeting to discuss her and then back on 4th April to be told yes or no not yet. They have given her lots of information on side effects etc and she is terrified, scared and has no idea what to expect, she thinks her life as she knows it is over. I wasn't able to go with my mum and dad on Monday so only know what they were able to take in and pass on. Would be extremely grateful for any straight forward honest advice or info, really want to know how long she will be having chemo for and what happens once the course is complete.

Sorry for such a long ramble!!
Sarah.

[brochoParticipant]

Hi Sarah its always scary to be told you need to start treatment and at first all the information on side-effects etc is just too much to handle .Please tell your mum to take it one step at a time , life will be different and sometimes its a struggle but it does get better as you get used to the treatments and find what works best for you Its difficult to guess what course someone elses treament path may be as it is a very individual illness . The doctors will come up with a plan to meet your mums needs specifically In a lot of cases it starts with a 2 or 3 month course of 3 drugs , one will be a chemo drug such as cyclophosphamide and usually the steroid Dexamethasone is given with it , but your mums doctors will give her all the info A couple of things are likely at this stage it can be very tiring , your sense of taste may alter and the steroids can make sleeping difficult and also you can be very touchy and a grump!Just remember its the drugs and not your mum if she is grouchy and it goes away when you arent on steroids!Depending on your mums health and fitness she may have a stem cell transplant afterwards which gives a good chance of a longish remission Its quite a simple procedure and you can get info packs from this site to explain it all Some people only need a short spell in hospital for this and others may need longer , ther is a period of time where you need to build up your fitness and immune levels afterwards which means you cant always be as active as you would like , but its worth it to be free of major treatment for as long as possible .I dont know if any of this helps but can I suggest you give the nurses on this site a call , they are brilliant at giving clear accurate info and advice Another person you could contact is your mums myeloma specialist nurse who will be happy to reassure you . Try to take it one step at a time and if you need support there are lots of lovely people on here for you , not just patients but carers and children too Best wishes Bridget

[michelleakitt29Participant]

Hi Sarah,
As Bridget says it can be very scary. My mum was diagnosed in July 2009, She was 63, she is now 65, She was in a really bad way at diagnosis and has given us some real scares, She is now doing as well as can be expected, she has a huge amount of bone damage, but she never lets it get her down…..(think they call it bury your head in the sand syndrome lol)Your Mum will be fine Im sure, try to stay positive, I know from experience this is not always possible. The guys and Gals on here have been great, I have had so much support and I will forever be in their debt. There is a lot of great help and support and advise from the members on here, always someone that can help and make you feel like you can deal with the situation. I found it a great help to talk to the specialist nurse and also the professor who Mum is under, I have never felt like I have asked a dumb question, Myeloma is a really hard diagnosis to get your head around, as everyones journey is different. I wish your mum well, and my advise would be to chat to the specialist nurses, who will be able to explain treatments etc to you. Don't go searching the web it can be even more scarey, use this site and the tools available. There is always the specialist nurse on here too.
with love michelle x x

[sarahlouiseParticipant]

Thankyou both for your very kind words and advice. Just waiting for April now to see what happens. Fingers crossed. xx

[ElizellenParticipant]

Hi Sarah
I am sorry to hear your Mum has been diagnosed but glad you have found this great meeting place on the web to discuss things with other carers and patients.

Anything you have problems with or questions or your Mum you want to ask just go ahead and post and someone will be along with a reply I am sure.

One thing that might be useful to get for her is a Myeloma Diary.
http://www.myeloma.org.uk/fundraising/fundraising-news/500-patient-diaries-sent-out-since-launch/

I have only recently found out about them and got mine but wish I had had it from the word go last year.

Eliz
XX
X

[sarahlouiseParticipant]

Hello,

Today was "D Day" (as we have been calling it) to find out if it was time to start mums chemo. I am so pleased that the answer was NO!! I know its only a "no" for now and the time will come, as her consultant said she is sitting on a ticking time bomb but at the minute everything is stable. It has really given us all, especially mum the boost she needed. Long may the bomb tick.

Sarah. xx

[jennycParticipant]

Hi Iam new to. I am 61 and diagnosed in june this year. Very scary. I am on the drugs now and finding them not to bad. Lots of side affects but coping. Have had 4 momths so far. Need 6 months before remission the stem cell transplant. Bit worried about that but sure someone will will talk me through it. Not very much support down this part of the country. No one to talk to much. Have a great partner thank goodness.Greatfull for any replyies of support. Jenny

[brochoParticipant]

Hi Jenny welcome to the club!! Iam glad you are coping with treatment so far, just remember to be kind to yourself and take it easy when your body needs it any chores will wait for another day Whereabouts do you live? You say there is not much support did you mean there are no support groups? Hopefully there will be one you can get to so you dont feel so alone, if not this site is the best support going There are so many of us at different stages plus carers , partners and children , all glad to offer support Stem cell transplants are tough but so worth going through when there is a chance you will get a long period of remission, keep that goal in mind to help you through it If you have questions about the transplant you will get lots of help on here Good luck I hope your treatment continues to go well Best wishes Bridget

[tomParticipant]

Hi Jenny

Welcome to our (now your) site and social club?

Good Luck on your treatment and forthcomming Transplant:-D I had mine December 2009 😀 and doing great8-)

Its a challenge each day trying to fight what you used to do? to now what you can do, listen to your body and when it tells you to rest (and it will) then rest.

Love

Tom "Onwards and Upwards" xx

[mhnevillParticipant]

Hi Jenny

Welcome from me too! In view of the fact that you haven't had any support you seem to be be doing very well and keeping in good spirits. As Bridget say, keep your eyes on the goal of a long full remission. You will get there.

I am interested as to how you got diagnosed. Were there health complications and what was your para protein reading and what have they got down to now?

There are lots of very brave folk on here who are willing to share their experieinces and tips re SCT.

All very best wishes to you and fix your mind on a very long future – MM isn't an immediate death threat; which I thought at the beginning.

Mavis

[jennycParticipant]

Hi Mavis. Thanks for your reply. I did think it was a death threat at first. As time goes by i realise its up to me. I am a Coeliac and had a blood test where they found i had a blood disorder. I was lucky as i dont have blood tests very often. Iam on my 4th course of treatment and am told i will need 6 before i have the stem cell transplant. Must say i am not looking forward to it but no its for the best. Is remission guarrenteed.?
Get quite a few bad days but can only be expected. My partner is very supportive as is my children. They are suffering quite a bit as we dont know what to expect. Still we will learn together as time goes on. Jenny

[tomParticipant]

Hi Jenny

Am sure you will sail through the SCT, wont lie to you though its not a walk in the park (but pretty close) we are all different in our response to the different treatments for the MM, But as I had a SCT in Dec 2009 and am now still in remission I would go through it all again if need be:-)

Am Pleased you have good family support as it helps a great deal

Love and Hugs (()))

Tom "Onwards and Upwards" xxx

[GillParticipant]

A welcome from me too. My husband had his first SCT in 2008. He was one of the lucky ones in that, apart from the loo trot on a regulat basis, he got through it unscathed.

The neutropenic (sp) diet did not cause a problem as he did lose his appetite and even the special menu in Kings College Hospital was foul. Great staff, wonderful treatment but foul food. Well you cannot have everything.

When he came home I did wrap him in cotton wool a bit. Visitors were told "If you have a sniffle. Stay away" The first time we went out we went to a local restaurant for lunch. They have a huge area at the back of the restaurant that isn't used during the lunch period but we are quite regular customers and they were happy to let us sit there away from other diners who may have had some terrible lurgy.

Stephen was half way through his Skate in black butter with chips when I realised he was EATING THE SALAD GARNISH!!! "You'r not supposed to eat that" I said the reply was "OH bu**er that I am really enjoying it" He was fine.

Good luck with your SCT I hope all goes well and you get a long remission.

Kind Regards Gill

[eveParticipant]

Hi Sarah and Jenny
Just popped in to say welcome to the club.As you can see there are lots of people and carers who are ahead of you on this journey.

My advice to you is take it a day at a time,it,s a long journey both of you are on as patient and carer,so my advice to you both,is it,s a journey were some people do well and get of the bus early,or it,s like my husband and myself still waiting to see if he gets remission.

Sarah you do not say were you are have you looked at forum to see the nearest help group,our,s is 65 miles away ,so no support that way,thats why I rely on this site so much,for information,help,and to be able to express my fears or joyful moments,and I rely on Bridget Tom,david Min and many others to keep me from loosing the plot,they can often put things into perspective and make you laugh.
Good luck on your journey Eve

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