[tmcParticipant]

Hi Ann and Pete
What is CDT? An hour a month on a bone stregnthening drip? I think that may be what my husband had Pamidronate they also called it bone glue! After a few treatments we were allowed to take the bottle home attached to his arm and after it had dripped through remove it ourselves. It made for a better day as time at home is better than the hospital. Maybe you will be allowed to do the same.
Sad you had the dreaded MM join you and your family it really is a life changing diagnosis.
I usually write on the careers site so maybe Ann will join us there.
Love Teresa.

[foxy555Participant]

Thanks Tom

You are always here for everyone

Good wishes

Pete

[RobertmauriceParticipant]

Hi Ann. I was diagnosed with myeloma last October with the same symptom of upper back pain, nothing else. I have always been very fit, but ,funnily enough the diagnosis did not come as a shock and did not cause me any distress. Right from the start my consultant told me that after induction treatment (Revlamid And Cyclophosomde and Dexomephasone) I would probably have a stem cell transplant. I received 4 cycles induction treatment after which my paraprotein level fell to zero. I dont remember what it started out at but after 2 cycles it was 37, after the 3rd down to 11. I have just been attending Sheffield Hallamshire Hospital for the first stage of the Stem Cell Transplantation, the collection of stem cells. And now I must wait a few weeks for the High Dose Therapy (Melphalan) and the return of my stem cells. This is quite likely what your husband will get, if he is otherwise fit. I am 67 and towards the upper age range for this. Throughout the last 6 months the worst side effect was sleeplessness, just 2 hours a night for 4 months. This was the effect of the steroids. However it did not prevent me leading a normal life. Since February I have felt as fit as ever. I really hope and pray that your husband will be as positive as I have been able to be.
RobertB

[andygParticipant]

Hi Teresa
CDT is usually the first line treatment of MM – well it was for me – and is cyclophosphamide, dexamethasone and thalidomide.
Hope your coping ok.

Love Andy xx

[tmcParticipant]

Hi Andy
not quite sure how I have managed to be so un informed on these terms but thanks for the explanation.Peter is on C. D. and Velcade and Revlimid may be added on Tue to keep his pain manageable.Hope you have recovered from your hospital stay.
Love Teresa

[foxy555Participant]

Hi Tom

Its Ann (Pete's wife), sorry to trouble you. Pete picked up tablets today (were not ready yesterday for him). We have spent the last hour sorting them out. He has got 6 lots to take plus aspirin, is this right? Really confused as on Dexamthasone and Cyclophospamide,the instructions say 10 tablets weekly!! Does Pete just decide how he takes them, ie 2 a day and 2 days free. Would have rang hospital pharmacy but obviously closed at week-ends and we want to get moving tomorrow with the medication.

Any advice would be most helpful, just a bit frightened at the moment!

[foxy555Participant]

Hi everyone

Originally posted this to Tom,but just incase he is away, would really appreciate any comments.

Pete picked up tablets today (were not ready yesterday for him). We have spent the last hour sorting them out. He has got 6 lots to take plus aspirin, is this right? Really confused as on Dexamthasone and Cyclophospamide,the instructions say 10 tablets weekly!! Does Pete just decide how he takes them, ie 2 a day and 2 days free. Would have rang hospital pharmacy but obviously closed at week-ends and we want to get moving tomorrow with the medication.

Any advice would be most helpful, just a bit frightened at the moment!

Many thanks

regards

Ann

[AliParticipant]

Hi Ann,

Sorry I cant help with a specific answer. My Mum was given a spreadsheet with all the different medication and on which day to take each in the cycle. Could you phone the Haematology ward at your hospital?. Just an idea….

Mum had 50+ tablets to take on some days and found it hard going, but at least she drank her quota of water before midday.

Try not to worry, I hope all goes well with the treatment.

Ali x

[HelenParticipant]

Hi Ann
I suggest you ring haematology ward and ask for a talk through for each medicine from one of the nurses or on call doctors. The doses can be started at different levels and then increased as time goes on in some places, so we might all have had different starting doses. For example I took 40 mg dex daily on days 1-4 and12-15 of 28 days and the cyclophosphamide 500mg on days 1 and 8 of 28 days and Revlimid daily for 21of 28 days. There are other patterns and it will depend on the dosage dispensed. You need this to be accurate as you might only have a weeks supply of tablets whereas I was given 4 weeks at a time, so what I have described was specific to me and I had a lot of contacts numbers for problems I might encounter. Don't be afraid to contact the hospital, these drugs are very powerful and need to be taken correctly to be effective. In my case I was in complete remission after 3 months and have remained there, at 0 for the last year. Good luck with it and let us know how you get on.
Love Helen

[tomParticipant]

Hi Ann

I have been trying to attach a copy of my drug regime so as you could look at it but it wont let me?? but as has been said phone hospital up it should be open 24/7 as they need to dispense Meds all the time 🙂

Good Luck

[wendyduffieldParticipant]

Hi Ann and Pete
ditto what Helen said, its really important that you know what to take on what day in the cycle and I am surprised that this wasnt explained to you or you werent given a chart by the haematology unit. I personally wouldnt take anything until you have this explained to you by the haemtology ward or your support nurse when they are open on Monday, oh hell just realised Monday is a bank holiday so try to get to speak to a doctor on the ward today, there is always a duty doctor there.

Hope you get it sorted out

Wendy

[PerkymiteParticipant]

Hi Ann, Just got back from my week in Spain so I am just catching up.

Helen is right the dosage is individual to all of us. Ring ward 9 at Musgrove they will, I am sure, help you.

Kindest regards – Vasbyte

David

[foxy555Participant]

Thanks everyone, just rang ward 9 at Musgrove and they answered my queries.

Best wishes

Pete

[tomParticipant]

Hi Pete

Am pleased you got it sorted out 😀

Tom

[foxy555Participant]

Hello all

Hope you don't mind me bothering you again, but I do have a question!

Pete started CDT last Saturday, fine for 2 days, his upper back pain actually eased, but after bone drip (pamidronate)on Tuesday, he has felt quite rough! He then got a terrible pain in his left shoulder. still not gone away.

He was told about side effects and we were ready for that, but last night he woke up with bad pains in the front of his ribs, quite scary because he also needed to take a spray of Nitrolingual (given to him in the event of chest pains). It did ease him and he went back to sleep. We went for a walk this afternoon, and OMG, my fit husband was out of breath! He has to go for a full MRI scan on Tuesday and so hopefully we shall know more.

I know this illness is individual, but I think he looks ill. albeit he is a really tough cookie!! and I really am confused and very sad at the moment

Ann
xx

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