[carryanneParticipant]

hi all ,my name is carryann . im a 65 years young grandmother of three. diagnoised with mulitble myeloma just before christmas. started first cycle CDT 21 standard route. any advice would be much appriciated. any tips , when do side effects kick in ! I'm on this for 6 mths.

[EvaParticipant]

Dear Carryanne,
First of all welcome to the site – and I'm sorry that you're ill. It's good though that you are receiving treatment.

The medication affects everyone differently so we can't predict exactly how you will react. Most people feel tired and need to rest a lot.

– The C in CDT is Cyclophosphamide and it can make you feel as if you have an upset stomach. You will be given other things to take that will help with that, so you might not notice that at all.

– The D stands for Dexamethasone which is a steroid. On the days you take it, you may feel full of energy and your mind might be racing, and you might even talk more! It could be more difficult to fall asleep. These meds are taken in cycles, so there will be a period when you do not take the steroid. During this time, some people feel more tired.

– The T stands for Thalidomide. This can make you feel sleepy a couple of hours after you've taken it. Some people feel a bit dizzy.

You mentioned you will go on six cycles of CDT. The meds are more likely to affect you the longer you are on them. Of course, that includes doing you good, and fighting the myeloma! When I got to my third cycle I really noticed that I was becoming more tired. It's important to tell your doctor about all your side effects so that they can adjust doses if necessary and also give you other meds to help you feel better.

When you have had CDT for a few months, you might start to lose some hair. This can be a normal response to the treatment. The hair comes back again at a later time.

Some people are lucky and don't have many side-effects from CDT. Feel free to write in to this site as well as talking to your doctor. There is a nurse called Ellen who can be phoned. Her job includes talking to patients who are on treatments and would like to know a bit more about what is happening. She is very helpful and she welcomes calls from patients with myeloma. Her number is 0800 9803322 and the calls are free.

Good luck with your treatment,
Eva

[BADGERParticipant]

Hello Carryanne

so sorry you have had to join I was diagnose jan 2009 and had CDT this gave me 3yrs 6mths remission I did not have a stem cell as my kidneys were badly damaged CDT was ok for me a few numb toes but no pain the only down side was from the DEX a bit hyper and not much sleep while taking it I was 61 and 1/2 when i diagnosed it was a terrible shock as i expect it was for you one i have not truly got over but there are so many new treatments now so hope for the future

Keep well
Love Jo x

[VickiParticipant]

Hi carryann.

Welcome to the forum. My partner Colin was diagnosed in October 2011 and had an sct in November 2012. The key thing I would say is to stay positive, ask as many questions as you need to, be particular about taking your meds and recording how you feel and what you eat. We tracked this consistently so when we went to see the consultant we could tell them and also ask about anything of signficance, as its so easy to forget during the cycle.

Best of luck and good luck to you

Vicki and Colin x

[tomParticipant]

Hey Carryanne

Pull up a chair and get those Cosesy Slippers on as its great in here 😀
Am sorry you had to come on in but you will (like I did) find it a great help with your treatment and Moods as you travel the road to remission.

Some dont get any side effects to speak of and just sail through it 😀 , take one day at a time and rest when your body tells you to rest.

Where are you being treated Carryanne as some on here might be going to same hospital.

Stay well

Love Tom "Onwards and Upwards" xx

[carryanneParticipant]

Hi Eva,thankyou very much for your imformation,it was very helpful,reading everyone's post,I feel such an idiot,It must be because I am new to all this,you all seem to be P.h.Ds and me starting on O level HA ha.
I had never heard of Myeloma,untill diagnosed just before Christmas,It was such a shock,20 months ago I had breast cancer,and had a mastectomy,all was going well,so I thought,then this come's along,It looks as though I have a lot to learn about this Myeloma.
What type of questions do I ask,when I go and see consultant?? I am usually a positive person,and the sort that say's come on carryanne pick yourself up and get on with it,I am sure I will when I find out about this horrible thing a bit more.
I start the second dose of cyclophosphamide on Monday,still early I know for side effects,you have all welcomed me to the club,didn't want to join, but looking at all the letters, what a lovely bunch of people you all are.:-) I am one of these silver surfers,but getting there.
thanks eva once again and hope to here from you soon.
carryanne 🙂

[VickiParticipant]

Hi carryann

Hope you are feeling ok. You really have been through the mill. I found that making notes throughout the cycle prompted questions to ask the consultant, for example if Colin felt very sick, couldn't sleep in the night, got emotional or grumpy on the dex, went dizzy or had cramp in his hands. Usually asked things like is that normal, what does that mean, why do we do that. They normally told us Colin's scores in terms of blood so we'd ask about what they meant, was that good or bad, what happens next etc. we'd normally look for some reassurance as well. To be honest I tended to be the question master because I was so scared for him I was like a coiled spring and would blast out all of these questions.

It helped to,read around this condition as well because whilst sometimes. Little knowledge can be a dangerous thing I felt that we could,understand some of the terminology. Colin and I are experts lol, on infections, we were at the hospital at least once a month ha ha 🙂

Take care

Vicki and Colin x

[EvaParticipant]

Dear Carryanne,
I've had to travel from Scotland to London for a new phase of my treatment. I'll be keeping a low profile as I'm using someone else's laptop. I'm certainly thinking of you,
Eva

[carryanneParticipant]

Dear Eva,
Hope all goes well with you,I will certainly be thinking of you and when the treatment is all over hope to hear from you,god bless
carryanne.

[carryanneParticipant]

Dear Jo
Many thanks for a nice welcome to the club,which I would not have joined by choice,as all the lovely people on this forum would think the same.I think like all the positive people that are on here you have to make the best of It.
I hope the CDT will be as effective for me as It was for you.I to dont get much sleep on DEX,last night only two hours.My feet are puffy and leg is a bit swollen,but dont know if I should ring up about It,as going up to hospital early next week to have a bone Infusion,and to see the consultant.The Infusion Is (PamIdromate) and is going to be monthly,I think thats the word I can't read his writing.
Hope you are keeping well,and hope to hear from you soon,not too good on computer as yet but getting there,so please all bare with me.
I will be thinking of you Jo,
God Bless
Carryanne 🙂

[carryanneParticipant]

Dear Vicki and Colin,
Thankyou very much for welcoming me to the club,there are such nice people in here.Many thanks for your advice on keeping records of all what is happening to me,and writing the questions to ask the consultant.I found that very helpful,my lovely hubby of 47 years went,and got me two diaries to put every thing down.Like you Vicki he helps with the questions,not yet up with the technical details eg,light chains that i keep reading of,blood counts,etc.et.,but learning.

I hope Colin is doing well,he seems to be a tough cookie to me,with going through SCT.I keep reading how hard that can be.One of my consultants spoke about SCT for me,when I have been on CDT treatment for 6 months,If all goes well he said I can go down that path as my kidneys are in good condition,as yet!!!though I think with my past history that could be doubtful.

I would like some advice about do's and dont's regarding Infections as Colin seems to be the expert on this.We have our grand children 5 days a week,when mums and dads are at work, cheap childminders ha ha We take to school,pick up at 3pm,cook their tea,help with home work.Then they are picked up at 5-30pm,It keeps us active,hope I can still do It,as time goes on,what do you two think,with this MYELOMA.

Hope all goes well with Colin,keep being a tiger Vicki,be thinking of you both.

God Bless
carryanne 🙂

[carryanneParticipant]

Hello Tom,
Many thanks for the welcome Tom,you are wrght in saying that there are a lot of friendly people in the club,which I wish I had not had to join,but i am in so will try to make the best of it.

I have been on the treatment of CDT for 2 weeks,not been too bad as yet,but feel low when I come off the DEX.,but I feel as though I could climb Mount Everest when on,not getting much sleep.

I read on one of your post you have grandchildren,I am worried about infections,we have our 3 grandchildren 5 days a week.We take to school,pick up at 3pm,cook tea,and help with homework.Then they are collected at 5-30pm.by their mums and dads (cheap childminders ha ha):-) keeps us busy.How do you cope with their colds etc etc?? My consultant at the Churchill Oxford,said to me its ok to be in the same room,but don't let them get to close.What do you think Tom?? as we are very active grandparents,full hands on.

Hope you are keeping well,did you have SCT.and what treatment are you on?? look forward to hearing from you,thanks again for the welcome.

God Bless
carryanne 🙂

[PeterJamesParticipant]

Hi Carryane
Oops , Just realised my post to you is up a few postings , should have replied to your last post !
Peter

[PeterJamesParticipant]

Hi Carryanne
I was diagnosed MM end May last year , went onto CDT , six x three week cycles , had little or no problems ,loved the steroids , got rid of all my spinal pains , became Rambo with attitude , then on a downer for 24 hours after each four days of steroids
We have two children , now middle aged & five grand kids , the two eldest we regularly feed
But your immune system is down for part of each three week cycle then towards the end of the three weeks bubbles up again, then you start over again
We were told infections were not good for me & the family were told if you have any sort of cough cold etc , keep away , a good sneeze can propel germs up to three metres
The went into Christie for SCT on 17th Jan , for the first 10/12 days I was In a dark unpleasant place, then became neutropenic
Ie , no cells in bone marrow so open to any infection , visitors wore aprons , gloves & masks , then I bubbled up & within two days my neuts were 3.7 , extremely good result , I found tea helped my mouth ulcers although I could not eat any solid food , lived on soup & ice cream
Came home after sixteen days , very weak , minus some but not all my hair !
Just slowly getting back on solid food , mainly due to my wife's efforts
Had my first review on Fri & told I was I star pupil @ 70 ! Bloods very good & bone marrow about back to normal
Through all this anyone with germs are banned & I will be on a tight leash until the end of April
Was all this worth it , absolutely !
You have to be ruthlessly single minded to succeed , your determination will drag your body through it, you have to be a tough old b—- r
Don't be put off , do the SCT
All the best
Peter

[LouiseAParticipant]

Hello Peter,

So glad to hear that the SCT went as well as expected and that you are continuing to get better. Well done you!

Dad goes to have his stems cells collected tomorrow at Leeds. He's a bit nervous – more about needing the loo while it's all going on! Transplant is provisionally booked on the 5th March. Fingers crossed those cells will come freely.

All the best,

Louise

[Author]

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