[ChrispParticipant]

Hello Everyone
Am new to this site – though am already grateful for your support through reading previous messages.
My husband was diagnosed a couple of months ago and started CDT a week ago. Am wondering what strategies anyone has for dealing with the effects of the dex? I love that it makes him feel better and he has less pain. He even manages to cope with the sleep disturbance. It's when he stops taking it.
Grateful for any suggestions
Chris

[BADGERParticipant]

Hello Chris
sorry you have had to join us here it must be a very difficult time for you and your husband dont be upset if your husband gets really grumpy and depressed this is the DEX talking I found it very difficult to handle I took mine in the mornig with yogurt which made it easier to swallow I took the last dose of Thalidomide before I went to bed at least this helped me to have about four hours sleep I have had MM since 2009 did not get any bone damage but it gave me renal failure CDT worked quite well for me I could not have a stem cell treatment due to the renal damage upto now I have had three years partial remission:-)
Good Luck Love Jo

[jmsmythParticipant]

Hi Chris

Sorry you have had to join us, but there is great bunch of people here. My husband started CDT yesterday after smouldering for nearly 6 years. He has to take Dex for 4 days – this is second day and I,m wondering how long it takes the side effects to take in. Frank has 2 lesions on his ribs and is going to see radio therapy consultant on Wednesday to see if they can be zapped. Is your husband going to have SCT? Frank will if all goes well. I hope your hubby goes through it with little trouble.

Take care love Jean x

Hi Jo how are you. Hope keeping the best. We have starts on this CDT journey and I have to say its scaring the life out of me.

Keep well love Jean xh

[PerkymiteParticipant]

Hi Chris Welcome(?).

CDT is a very personal experience in that most people seem to have different reactions to the drugs. I got very short tempered, which is most unlike me because I do not normally have a temper at all, and I could not sleep the night I took Dex. These two things seem to be quite common in most people we used to call it ?dexattitude?. If he gets dexattitude bad remember it is not him but the drugs, keep that in your mind at all times.

I used to stock up on videos and recordings and put my ear phones on and watch films all night or play on computer. Other than that I cannot remember anything significant happening during my CDT treatment, which was in August 2009. I have had an SCT, Dec 2010, and am in partial remission my PPs are hovering around 2.4. I have the bog standard G myeloma.

Kindest regards ? vasbyte

David

[ChrispParticipant]

Thank you all for making me feel welcome and for your advice.

Unfortunately, my husband was diagnosed late and has already had radiotherapy for a collapsed vertebra. He has had several short courses of dex already and was hoping to get onto myeloma XI, but it would have meant retesting everything and the consent process would have delayed treatment further.

Am just glad he is having some treatment.

Chris

[EvaParticipant]

Hi – I've been on CDT in the past, and had problems with dex withdrawal. It's because the adrenal gland closes down and needs to start working again.
My onc suggested that I could taper the dex off more gradually – in other words the last day's dose could be divided over a couple or even three days to make the landing a bit gentler.
Another option(if your consultant agrees), might be to try a slightly lower dose of dex and check if the treatment is still successful.
Best,
Eva

[andygParticipant]

Hi Chris
Welcome to the forum that we would all rather we had never needed. You will find that we are all a friendly bunch and some a gold mind of information. Ask any questions you like and you will get honest and frank answers you will also get lots and lots of support. No two peoples journey along the MM road are the same we all react differently to the drugs but hopefully not too badly. I hope your husband sails through his treatment and has a great outcome.
I personally think it can be as hard and sometimes harder to be a carer in the battle against MM.
Wishing you both good luck.

Take care
Andy xx

[VickiParticipant]

Hello chris

My partner Colin was diagnosed in October 2011. He is also taking dexamethasone. Overall he is not too bad with this but like the others have said sometimes gets a bit grumpy (usual! So what's the difference ?). to be honest I just ignore it. He too has a disrupted sleep pattern and he gets up and reads for a bit, watches tv and the can come back to bed and sleep.I try to categorise the tablets as our friends (odd?) but that's because they are the tools to make the job complete and beat mm. It's not easy chris that's for sure but it will be worth it in the end x

Vicki

[ChrispParticipant]

Thank you all – it is so encouraging to hear your experiences. It can get a bit lonely in mm world!

I don't mind that Nick gets grumpy on the dex, he normally has the patience of a saint, though it was a bit of a shock to start with. Thanks Eve for suggesting dividing the final dose. Will ask the consultant about that at next clinic. The sleep disturbance just means he gets up and does some work, or watches tv. He seems to catch up again courtesy of the thalidomide.

The only thing that made him really ill was the IV bisphosphonates and that only lasted 24 hours.

Thanks again – hope you all have a great long weekend (and it stops raining so I can mow the grass)

Chris x

[PerkymiteParticipant]

That is interesting about the IV bisphosphonates.

I take Loron, two tablets every day and have been taking them since Aug 2009. I have had no reaction or side effects from them at all.

From reading the posts over the years I can only remember a couple of other people mentioning they take Loron, I wonder why they proscribe different bisphosphonates, I assume they all do the same job – which I understand is to counteract the affect of MM on your bones!

Kindest regards – vasbyte

David

[ChrispParticipant]

Hello David

My understanding is that the IV bisphosphonates are heavy duty and they are used where there is more damage, as they are taken up by the cells that break down bones more quickly.

The oral ones seem to be favoured for prevention, they do the same job, but with less side effects. They are used for treating osteoporosis as well as mm.

I think Nick might have been feeling unwell the day he had the treatment anyway – we'll soon see, as he has to go back for another lot next month. Great view from the haemoatology ward at the Royal Liverpool!

BW
Chris x

[PerkymiteParticipant]

Hi Chris, Yes, that would fit in. My first skeletal survey showed no other lesions other than the flipping great Tumour eating my neck.

Kindest regards – vasbyte

David

[BADGERParticipant]

hello Jean
Nice to hear from you I am doing ok at the moment the next breath holding moment is in july when they check my para's the next app in June is just to check Hb levels etc to see if I need any blood. How is Frank doing are they giving him anything for the ribs although I expect the dex will help a bit although it will not help with the bad moods did you get to spain or was that all cancelled
Lots of love Jo x

[jmsmythParticipant]

Hi Jo

Glad that you are having a bit of a break from appointments and doing well. Do you live close to the hospital? We are fortunate that it inly takes about 20 minutes to get there. So if we have a long wait we just come home.

Frank has been on lots of medication, injection and Dex – tomorrow last day for Dex till Friday. Not sure if side effects takes time to manifest themselves, but his mood has been great, the only effects so far are water tastes terrible and he is getting hiccups all the time! We are off to Radio therapy on Wednesday to see if they will zap the two lesions. I was a bit cross at the hospital as the registrar told us that the lesions were small only, 3mm. But when we saw consultant she said the info was wrong the lesions are 3cm! So will see on Wednesday.

Yea got away to Spain for 10 days so glad we did as it will be some time till we get away again. Hope you are enjoying the long weekend. Pity about the weather. I have come out in support of Frank and off the alcohol!!!! Least said about that the better.
Take care and keep well Jo
Love Jean x

[ChrispParticipant]

Hello David

The neck thing is Nick's major problem too. Waiting to see whether he needs surgery to stabilise where the fracture happened. I'm guessing he isn't the only one who found out he had mm by getting out of bed and breaking his neck!

Still didn't stop him going to work that day though…

He is getting very bored with the collar he has been wearing for the past two months. Loves it when I wash the padding because it comes off for a couple of hours.

Chris x

[Author]

Posts