[SalParticipant]

Hello!

I’m trying to gather information about the relative benefits and drawbacks of dexamethasone and prednisolone. My husband is currently at the end of his 4th cycle of Velcade, cyclophosphamide and prednisolone. He is on prednisolone because he had a severe psychotic reaction to dexamethasone last year and was hospitalised for nearly 2 weeks as a result. It was truly horrendous as he did all sorts of things that were totally out of character and dangerous, and the psychosis developed with no warning.

His paraprotein and light chains at the end of the 2nd cycle showed little improvement and tomorrow we’ll get the results from the end of the 3rd cycle. His consultant has already started talking about a change to dex, and my husband says (not surprisingly) no. I’m concerned that he needs the most effective treatment for the myeloma but at the same time, we can’t risk the psychosis. He has been given antipsychotics as a preventative measure and has tolerated the chemo very well.

He was on 40mg of dex daily for 2 weeks before the psychosis developed previously. He had no prior mental health problems.

It is very difficult to get information about the risks associated with steroids and whether, in substituting prednisolone, the chemo regime is less likely to be effective. I don’t want him to dismiss a change to dex, but at the same time, neither of us can deal with another psychosis.

Has anyone found any information about this or experienced anything similar?

I’d appreciate any advice.

Thanks,

Sarah

[eveParticipant]

Hi Sarah

I cannot help but question the amount given of Dex ????

My husband is on his fourth treatment in three years,each time with Dex,and the days he has taken it are varied,example:he is at present on Velcade one injection a week,he takes 40 ml two days running!!!,when he had two injections a week he had four days of 40 which was changed to 20mg,so it is easy to reduce the dose!!!!, but 40mg of Dex daily for 2 weeks!!!!,did you ask Why????? Never never heard of that amount every day for 14 days.Eve

[SalParticipant]

Thanks for your reply, Eve,

The dex waa given last year before M was diagnosed. He had spinal cord compression and it was the first thing the spinal surgeons started him on before his first major surgery. The plasmacytoma that had caused the compression and destruction of a vertebra in his neck wasn’t diagnosed till he was in hospital with the psychosis. initial biopsy results suggested we might be lookimg at spinal TB.  Apparently dex is often given with spinal cord compression. We had no idea it had caused the psychosis till he’d been in hospital about a week. You can imagine that my mind was going off in all directions: brain tumour, cerebral haemorrhage … all sorts!

At that stage, nearly a year ago, we hadn’t even heard of myeloma and had no idea about any of the drugs. Thanks to this site and helpful advice, I’m a lot better informed now and ask questions about everything. Comes in handy when he’s nearly been given the wrong chemo drugs! The myeloma was only diagnosed this January, although we were told last May that there was a high chance that it would develop.

It’s reassuring to know that the normal dex isn’t so high, though.

I hope Slim is coping with the Velcade. M seems to tolerate it pretty well, but that’s no good if we find out tomorrow that it’s not making much different to the PP!

Best wishes,

Sarah

[eveParticipant]

Hi Sarah

Well all that is good to know!!!!

The worst thing I can think of that Slim did in the early days of Dex,is he got an idea to put everything behind the wardrobe,and I said no,when I went out I came back to an empty cupboard and it was all behind the wardrobes!!!!!,I do not let Slim drive on any treatment!!! Apart from that argumentative and stubborn ,I can cope with that by doing a dairy and pointing out its Dex time!!!!
Plus as time has gone on his body has adjusted,Slim was psychosis in ITU very frightening for him,but I put it down to the combination of drugs.

If they feel the Dex would help,why not try a reduced dose building up!!!! Eve

[bandityogaParticipant]

Hi Sarah

My husband went loopy on dex too but he also had sepsis due to the wound in his back after an operation for spinal cord compression. He is now on velcade given once a week and 20.gm of dex for 2 days a week and coping well so far.

Hope this helps.

Maureen

[HelenRParticipant]

Hi sarah,

When I first had Dex in hospital I had some hallucinatory dreams etc, quite scary. I was wary of then having to take it again, but they did flag up to me that it may have been the particular combination of drugs and other issues I had at the time: I shouldn’t assume I would have the same effect again.

I had 40mg for 4 day blocks, for 4 weeks in a row at first and then just the first 4 days of each 21 day cycle: that was the protocol on the trial. I had insomnia, appetite, weight gain, and definitely mental effects (very busy head, very up on Dex days but down two days later). Nothing scary though, bit love-hate as I really liked the up days!

I’m now on VTD with 20mg of dex each day of velcade and day after: day 1,2,4,5,8,9,11,12. Kind of annoying as it dominates two weeks, I’d actually prefer the 4×40! I don’t notice the side effects are less, though maybe I’ve forgotten. The insomnia is annoying, especially, though sleeping pills help.

I agree with Eve, I’ve NEVER heard of two weeks continuous 40mg. Particularly a new patient first diagnosed!! Nightmare.

Dex is meant to be the most effective single anti-myeloma agent… I don’t know about prednisone. But then again, it’s often a combo that works so maybe it’s the V and C that aren’t doing it for him. Still, I see the value in trying Dex, introducing it carefully, etc.

[HelenRParticipant]

Sorry my ipad was being weird so I had to send without finishing and saying bye!
Good luck… I hope results start to pick up.

Helen

[keithmtParticipant]

I had nothing like the awful reaction to Dex that you’ve described here (thank God) but I did have 5 days of non-stop hiccups during my first cycle. They reduced the dose and that that reduced the hiccups but I always get them to some degree, as I did last night.

My only reason for mentioning my trivial reaction is that I asked my consultant what the purpose of steroids actually was. He said that there’s not a clear answer to that except they know that the steroids make all the other drugs work that much harder. For that reason, he really didn’t want to stop them all together if I could manage.

Cheers

Keith

[eveParticipant]

Hi Keith

Quick one!!

Get some chlorpromazine tablets from your GP,they stop the hiccups, Eve

[SalParticipant]

Thank you Eve, Maureen, Helen and Keith,

Your responses helped me to have a preparatory discussion with my husband before his appointment today, which , I think, helped him to make his decisions today. Unfortunately the PP has not shifted after 3 cycles. The light chains are down a bit but not as much as the consultant expected/hoped. We had a long discussion about alternatives and the decision was to change from prednisolone to dex, at 20mg for two days – Velcade day and the day after. M is taking antipsychotics and we will be on the lookout for any peculiar behaviour. Hopefully things will be ok.  We really can’t go through last year’s experience again.

M’s consultant is going to take his case to the myeloma MDT team and talk to a colleague in another hospital to take some soundings about whether we should be looking at changing the regime.

There are some positives: the disease is stable , not progressing, and M is not feeling too bad, apart from mobility difficulties & being slightly neutropenic.

Thanks again for your help. It makes a difference to feel more informed.

Sarah

[duskParticipant]

Hi Sal

The CVP regime is one that showed up well in phase 1/2 trials it seems. But it is clearly not a standard regime as is CTD.

As with most combinations of drugs for treatment there are no hard and fast rules and the consultant may make decisions based on a range of factors. In some places only two drug regimes are given (not usually in the UK) and in otyers a three drug tregime. I do not think anyone really knows which works better entirely as the trials to assess this have not as far as I am aware been undertaken.

Dusk

 

[bandityogaParticipant]

Hi Sarah

My husband is on the same regime. Had 2nd velcade injection yesterday and on day 2 of steroids. A bit more emotional and talkative but otherwise well. Don’t know if this is reducing his light chains yet.

Can I ask if M is getting physio to help with his mobility? Ian had physio when he basin the local community hospital and then the reach team came to the house. He couldn’t walk at first but progressed from a zimmer to sticks.

Glad I can be of some help as we also had a horrendous year when Ian was diagnosed.

Stay positive.

Maureen x

[SalParticipant]

Thanks Maureen,

It is so encouraging to hear of Ian’s progress. I’m really pleased to hear he is coping with the chemo. M has been having physio. He was referred after his second spinal op in order to strengthen his neck muscles enough to stop him needing to wear the neck brace. His neck is doing really well and he gave up wearing the brace just after Christmas – when his myeloma was diagnosed! Unfortunately since then the physio has been stop-start. He has had one appointment. The next one was cancelled and rescheduled for about 3 weeks later and then that one was cancelled and rescheduled for next week. At his last appointment the physio (who has since left) suggested a referral to the hydrotherapy pool, and when we checked with M’s consultant he thought that was a good idea.

We asked again today about any further help from the orthopaedic team but apparently they have said vertebroplasty isn’t an option for his lumbar spine fracture. No reason given. We might go for a second opinion on that when he gets through the chemo, and ask to be referred to the hospital where he had his previous surgery – or we might even just pursue the appointment that hasn’t come, where he was supposed to be discharged by the spinal consultant following his neck surgery, and talk to him about it.

M is mobile to the degree that he can walk a short distance – e.g. from the hospital car park to the haematology/oncology department, but his ability does vary. He’s applying for a blue badge (after much nagging from me). We know he qualifies as he has a letter saying so, but I think it’s hard for him to accept that he is less mobile at 44 than many friends and family in their 70s.

I think we are both pretty positive but I have the occasional wobble & he internalises!

Let’s hope this velcade regime does lots of PP and light-chain zapping for both Ian and M!

Sarah

[HelenRParticipant]

Hi Sarah,

Glad it was helpful and thanks for letting us know. I hope the Dex makes the difference. It’s true that even ‘no rise’ is better than the way it’d be shooting up if he wasn’t on it, so maybe it’s zapping some of the clones but not all of them and another thing in the mix may help that. I hope so.

I know you’ve heard this before but myeloma really is so individual, so what works for one person is also very personalised, I always think it’s like finding the right shaped spanner for your myeloma – and sometimes it takes a few tries, but sadly they don’t know enough to get it right first time yet always. Essentially it’s lots of sub-diseases they haven’t quite worked out yet. I had PAD first time round, and all my light chains vanished after one cycle. I know several others who had PAD, all under 50 like me, fit and healthy otherwise, so in that sense similar – but with a total range of response, in terms of speed and ultimate end ponit. From rapid drop like me, to slow and steady drop followed by SCT, to slight drop then plateau and had to try a different treatment which then worked better, to didn’t work at all but then another treatment did. And some of the people I met with the longest remissions (still in remission now) had a failed treatment first, then a second one which worked, then SCT and all good. My response was great but didn’t last so long, although I’m hoping the SCT will help next time around. So in some ways it just doesn’t feel like we have the same disease, we all have our own personal one of the Heinz 57 varieties, with some things in common and some not.

So it’s good to keep positive and see what works in practice, even though it must be very demoralising hearing the lack of effect for now – still worth trying the adjustment before moving on if necessary. Trials just record average treatment effect, overall percentages of response and median remission length etc, but that doesn’t necessarily tell you what will work best for you, if you are an outlier in some way genetically. Sometimes it’s just a case of suck it and see!

Maureen, it’s so great to hear that Ian is so much more mobile than last year when he was stuck in hospital for so long and when he was first out and it was tough. Really nice always to read your posts and see you getting out and about!

Helen

[blueant107Participant]

Hi all,
seems I’ve been lucky on the dex front. My reactions have been sleepless ness going dizzy in supermarkets and bad flatulence. Initially the co phosphates sent me dool alley and the tramadol make me confused a little. My main reaction has been sweating badly.
I just got my date to go and see the consultant and move onto the sct part of this.
Its a hard slog as people dont realise the energy drain that just happens anywhere and anytime with this daren’t go to the pictures as when the lights go down my eyelids seem tooas well.
Hope everyone hassuccess this forum has given me so much information thanks.
regards
Anthony

[Author]

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