[SarahJaneParticipant]

Hi, rubbish news this week, my MRI showed I have a tumour on a vertabrae and I have had to start treatment straightaway. At least it explains the back pain and I am greatfull for the support from Stoke Mandeville where I will get all my treatment.

I decided to go on the Myeloma XI trial – and got RCD. Although I had a few days just on DEX (I'm on the high dose) and this morning took the first concoction of chemo/anti-everything drugs.

I am staying positive – but the bit that scares me is the side effects and the way I react to the drugs – I can see how it affects people differently, so I am going into the unknown now.

I work full time, have a very suportive husband and 10 yr old, so we are on a steep learning curve with such a fast diagnosis.

I would love to from hear anyone who is:
In a similar condition
Is on the Myeloma XI trial/or finished and how they got on?
Any tips for the side effects
Good Dex days, and do the bad Dex days get better?
Do the side effects get better with time or worse?
Will I be able to work – at 43 I am not quite ready to retire – and the mortgage needs paying 🙂

Feel like a bit of a zombie today – and I already suffered from dizziness before diagnosis 🙁

Thank you for reading and any support you may have.

Sarah Jane
x

[eveParticipant]

Hi Sarah Jane

It,s all a bit mind blowing at first,and naturally you are worried about your child.Try to take one day at a time,and get help to sought out your problems,the easiest way to do it,is contact the Mac Millan Nurses.

They can help you with all forms,get things in place now because you will not feel like doing it later,blue badge,and forms to claim money,do not wait until you cannot manage.

I can only say,you will get through this,because you have no choice,you have a child to bring up,and this will be your strength.

My husband is on the trials CDT,Velcade,then SCT and remission,a few blips on the way,this started 2 years ago,and it has taken this time to get are lives back,so do not expect a quick fix.One day at a time,listen to your body,learn all you can and come on here and ask questions.

The people on this forum can help you,the drugs you are taking effect people differently ,you might be lucky and have few side effects and sail through the treatment,lots do.Good Luck Eve

[tomParticipant]

Hi Sara Jane

A warm welcome and I would like to wish you well on your road to remission. I hope the road is a smotth one ? I felt mine was smooth after reading some posts on here later on? or is it that the mind can blank things out?? nope I had a easy run thats for sure.

Stay Strong and stay well and follow what your body tells you, I know it will be hard with having a young 10 year old, but get as much help as you can and even if you think you can manage take that help anyways.

Ask away I am all done after CTD them SCT in 2009 and doing good 😀 , as for work ? I was on sick for one year and went back on light dutie's.

Love Tom "Onwards and Upwards" xxxx

[HelenParticipant]

Dear Sarah
Sorry you had to join. I'm on myeloma xi trial, 20 months now, we stay on it to relapse if possible and there are lots of us out here. I've been back at work a few months now, I'm still angry, upset and feel cheated out of my old life but I've gradually moved on. As for side effects, we're all so different, read some of the old posts as background, might give clues to how you feel. The drugs are harsh but you need tough remedies for tough diseases. Try and listen to your body, rest when you can, sleep can be difficult but rest helps. I worked all through the initial chemo and then had a year off after transplant. Now back full time as a nurse. As you say, got to pay the mortgage somehow.
Love Helen

[VickiParticipant]

Hi sarah jane,

My partner Colin is on mx1 trial. He had revlimid,dex and cyclophosmahide. He had 7cycles and pps and light chains came down to virtually nil. He did have some ups and downs, and we did spend a few occasions at the hospital with temperatures. However overall the medication did the trick and he is waiting for an SCT now. I cant say it. Wasn't scary with the side effects listed, but we knew this was the best option for Colin, and they have to record side effects even if it only happens to one person,we are told 🙂 Colin did feel tired a lot, bit dizzy,and a bit sick, wasn't sick though. Colin worked on and off;his employer let's him do work from home and then go to work when he is able. We did a HR plan for them to consider and they agreed it.

Colins bone marrow took quite a hammering so overtime it did take him a while to recover after each cycle, however frustrating he kept responding, re the dex Colin could get quite emotional sometimes, tears usually. But that soon passed

With the best of luck to you, and sorry you have to take all this stuff, but it does work 🙂

Vicki and Colin x

[mhnevillParticipant]

Hi Sarah Jane

Welcome from me. I am not on a Trial, but have just has basic CDT, but wanted to write and say that I didn't have any bad response to Dex so obviously some of us get lucky. I have had other problems, but that's MM for you!

All best wishes as you adjust to this progressive diagnosis – hope the drugs do the trick for you as for so many others.

Love.

Mavis

[DebsParticipant]

Hi Sarah Jane

I am quite close to you as I live in High Wycombe!

I was diagnosed in 2009 with SMM and then progressed to treatment about a year later (although I now get treated at the Marsden in Surrey). I also was put onto the Myeloma XI trial in November 2010 and got revlimid first time. It worked for me for 4 weeks and then I plateau'd and went onto velcade for 4 cycles. Then I had a SCT in July 2011.

I found on revlimid for me (and I know this isn't the case for everyone) I didn't suffer too badly….my taste went up the spout and I had times of being tired, but generally I was ok….even th Dex didn't affect me like it does others. Generally I just piled the pounds on. I found the velcade much harder and that would wipe me out for days at a time, but I did learn when and how it affected me. I kept working while I was on revlimid (and also have 2 kids now aged 6 & 8) but stopped on velcade before the side effects kicked in, as I wanted a bit of time at home before my transplant. I'm not sure I could have managed work unless they'd been very flexible with me.

I think the main thing is to learn to listen to your body…if you feel tired – REST! Don't think you're invincible! And I agree with what the others have said about getting a blue badge now. You sort of have to answer it saying how hard things are on your worst day. I could have managed just about without it before transplant, but in the aftermath of it, it was invaluable to have.

I am so pleased that you have a supportive husband though…it makes such a BIG difference though!! Mine is fantastic and he has got me through the last couple of years.

Good luck and happy to answer any other questions you have 🙂

Debs x

[angeParticipant]

Hi Sarah Jane

So sorry to hear your news. I will be thinking of you and your family and wish you all the very best with your treatment. I am sure there will be lots of support, help and advice here for you. I am still under 'watch and wait' and am attending the Cardiff info day with my husband and son soon.

Take care

Andrea
xx

[docmikeParticipant]

hi sarah ,
I am very sorry to hear your news ,altho your back pain in retrospect was unfortunately significant after all.It confirms to me that a MRI of the spine at least should be part of the workup of smm and also performed on annual basis as part of the surveillance programme .Hope tx goes well .Are you having radiotherapy to the spinal lesion ? altho if you are still working I assume your pain relief is adequate?
best wishes Mike

[eveParticipant]

Hi Sarah
They will not use radiotherapy on your spine unless you have compression of the spine and cannot bear the pain,chemo will do the job just as well.

Just concentrate on your tablet regime,it helps to do a board with the days and times you have to take them,as it is easy to forget what day you are on,some hospitals provide a chart worth asking.Learn what side effects to expect then it will not seem scary,take your Dex in the morning as you will find you get a bit hypo.Rest when you can.Eve

[keznmelParticipant]

Hi Sarah Jane..

It is my partner Melvin who has MM. He is 39 years old and like you had SMM and then one day went to the hospital to find PP levels had increased and he started Myeloma XI and also is on RCD.

Melvin is at the end of cycle 2 and I think he has coped quite well so far. Unfortunately he isn't working due to his L3/L4 vertebrae completely collapsing causing spinal cord compression. He is waiting for the MM to regress and then hopefully will have an operation to stabilize the spine. Melvin was diagnosed after back pain and found out it was bone damage to the vertebrae also but then went on to have 30 sessions of radiotherapy …..the SMM for 12 months which brings us to now.

Melvin seems to have his better days while on Dex and then about the 2nd day of not taking them, I notice him changing. He is more tired, irritable and quite low in mood. I'm not sure if anyone else has experienced that. As he has only been on them a short time, I can't say if the side effects get better in time. Oh..one other thing he complains of is leg pain and in the sternum…although Melvin does have a lot of bone damage so we never know if it's due to the Chemo or the MM. Unfortunately Melv isn't working at the moment but we did ask the Dr's about working through treatment. What they advised was to find the pattern during the cycle…work out what days you feel most well (maybe the days while taking Dex) and work those days and when you feel down, take the days as rest. I know that all sounds easier said than done but your work force have to comply. Your Dr should write to your company with your permission and explain things. I know they did for Melvin.

Besides accepting the cancer itself, I honestly believe that the financial worries are what make you lose sleep – I know that's how it has been for me. Have you applied for DLA? There are 'some' help out there but as I've found out ..there isn't any help with mortgage payments which is the most concerning factor.

I do hope that this finds you having a well day….remember to listen to your body and take baby steps. Your body is going through a massive trauma and needs to rest..although I know that doesn't help you when the bills come through the door. Try and get as much advise from a benefits officers as you can.

Take care for now Love Kerry x x x

[PeterJamesParticipant]

Hi Kerry
I am half way through my final 6 th cycle of CTD
I take dex , for four days at 40mg/ day twice per three week cycle
They make me very hyper, get rid of all my arthritic bits, so I do my jobs on these four days
But the day after I stop dex, I become very weak , arms & legs particularly don't want to work , lots of leg pains
As time has gone on theses downs seem to have got worse, not to surprising with all the poison going in this last 16 weeks
The down bit lasts about 48 hrs. Then I bubble back up
Although a lot older , i do not want to give up work , so I work on the good days, also would not want to let this menace get the better of me
Peter

[keznmelParticipant]

Hi Peter…

You explained just how Melvin is. He said if it wasn't for the inability to work or resume normal activities due to the spinal cord compression, he would be able to live quite a 'normal' life while on the Dex. However – he suffers such a come down when he stops…like you, he feels so tired, almost lifeless. Only waking to eat most of the time. Then after a few days, he is alive again. The Nurses did prepare us for this but it's still tough.

It's great to hear you sounding so strong with so much fight Peter! Good for you! Melvin would love to work, drive, walk the dog…just usual things but he just can't. That for me is so sad to see and I know frustrates him more than the diagnosis itself.

You keep going strong and take care of yourself.

Best wishes Kerry x

[SarahJaneParticipant]

Thank you so much for all your replies, all interesting to read. I know everyone is different but it helps to know how people cope with everything.
I am now on day 14 of my first cycle. I have never taken so many pills :0

Chemo tablets OK, taken with anti-sickness.
Revlimid – dizzy/foggy head, night sweats, awake at 4pm – not helped by all the fluid you have to drink.
And the infamous Dex – Day 1/2/3 OK ish, Day 4 bit spacy, withdrawal days – bit unbalanced.
Bonefos – making my mouth tingle
Plus anti-digestion, anti-viral, anti-biotic, aspirin
Cant wait for my week of no tablets! apart form the anti-life ones.

Very anxious and not sure if the tablets are making this worse, but I have been referred for councelling which I hope will help. Already suffered from dizziness prior to diagnosis – so I think this has just been made worse.

Work have been supportive and let me do some half days last week, they now also have my DEX diary so can work round me. I just feel like my confidence has been knocked and need to feel more calm and less jumpy – but in time I hope this will happen.

Sarah Jane

[angeParticipant]

Hi Sarah Jane

Hope you are still coping with your treatment. I sent you a little private message, so hope I did that properly! Take care

Andrea xx

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