[lynnesParticipant]

At my consultant appointment a month ago I described my mood swings and the Dex dose was halved to 20mg.  I was told that the 40mg dose could not be tolerated for too long by many patients.  Since then I still have low mood swings two days after taking them, but not as bad as before.  I also try to get out of the house on a Monday to stop myself sitting feeling sorry for myself.  I discovered at today’s consultant appointment that my flabby arms were also a side effect of the steroids (loss of muscle tone) and not a sudden onset of bat wings!   Am starting my fourth VTD cycle next Friday – told that I have a further two after that.

[lynnesParticipant]

I am on VTD regime (40 mg dexamethasone once weekly on a Friday).  Come Sunday evening and all day Monday I would become depressed, crying, inconsolable and wondering if any of this was worth it.  I have just had my second monthly consult since starting chemo and mentioned this and the Dex dose was immediately halved.  I was told that not many people could tolerate the 40 mg steroid dose for more than a few weeks and I had been dutifully taking them for two months!  Double check what dose steroids your dad is on – they are a very nasty mood manipulator.  I am now waiting to see if the reduced dose reduces my black moods.

Lynne

[lynnesParticipant]

Many thanks for your reply Sue.  My hearing loss began after I was prescribed Ramipril for slightly raised BP.  I learned that this too is an ototoxic drug but nobody would accept that it had caused my hearing loss (rather I was quite loopy).  To add insult to injury my BP is only ever raised when confronted with a BP monitor – over 24 hours at home it was slightly raised but not of concern.  I had grommets inserted and the hearing in my right ear improved but I am still virtually completely deaf in my left ear so an SCT won’t make much difference there but I dread losing more hearing in my right.  I bought “invisible” hearing aids which can be adjusted so hopefully this might prove useful post SCT.  Reading through your post again it looks like it has taken about 6 months to recover hearing but how are you in general?

[lynnesParticipant]

It’s good to read your experiences with Dexamethasone.  I have a Velcade injection once a week and take 40mg of Dex that same evening.  This gives me a boost on a Saturday and I can go shopping – slowly but nevertheless I have more energy than the rest of the week.  However, by Sunday/Monday I am in a really dark place which I gradually return from just in time to start the whole cycle again.  It is good to know that sanity returns when Dex is discontinued.

[lynnesParticipant]

I received my first Zometa infusion just before starting VTD treatment.  I received a 15 minutes infusion at 5 p.m. on 8th May, went to work as usual on the morning of 9th but had to leave for home at lunchtime with severe shaking, bloodless fingers and profuse sweating.  Was in bed for two days alternating with high fever, shivering, sweating, delusional – dreadful time.  When I could get out of bed I could not raise my arms and my calf muscles felt as if I had run a marathon.  I was not warned of side-effects and went on for my first Velcade injection on 12th May.  I was loath to have a second Zometa infusion but received advice via posts on this forum that a longer infusion time could help, along with drinking plenty of fluids before, during and after the infusion.  Reluctantly I agreed to another try and this time the infusion was for 30 minutes and I also received a saline flush afterwards.  The side effects were minimal this time, although my limbs felt a lot heavier than my new “normal”.  I am not sure of the benefits – is there anyone that could explain them to me.

[lynnesParticipant]

I suffered from inexplicable hearing loss (left ear) long before I was diagnosed with myeloma.  I am currently on VTD hoping to go into remission and then go ahead with a STC.  I already have hearing aids which I don’t wear unless I am going out but it looks like I might get them adjusted post transplant.  I would be interested to know if there is anyone out there who suffered hearing loss before learning they had myeloma?

[lynnesParticipant]

Have just finished my first cycle.  Have slight tremor in my left hand but both hands and feet give the feeling of slight pins and needles.  My feet burn after Velcade.  I am feeling slightly more energetic but must remind myself to slow down as I become very breathless – it is difficult to get the right balance.  My legs are still feeling heavy but I seem to have come out of my depression, which was pretty bad for the first week and a half.  My appetite seems to have improved too.

[lynnesParticipant]

Thank you for responding David. I think if I ask for a longer infusion time and drink plenty of water all the way through it might be less traumatic. I seriously did not want to have a second infusion knowing how the first affected me.

[lynnesParticipant]

Thanks for your reply Maggie.  I had heard that the infusion time could make a big difference.  Mine was for 15 minutes but actually took a little less time.  I will seek advice next week when I see consultant for the first time since my treatment started.

[lynnesParticipant]

I am into my third week of VTD and to be honest am not sure what is going on with my body.  I do have very slight tremors in my hands but not constantly.  I can only describe my legs as feeling “heavy”.  I get quite breathless but feel better coming into my third week than I did during the first, when I seemed to spend most of my time resting on my bed with no energy to do anything else.   I was advised by the chemo nurse to just go with the flow and I followed that advice with no qualms.  I am hoping that things stay this positive – apart from the moodiness everyone tells me I am displaying – moi?

[lynnesParticipant]

I will watch response to this post with interest as I am due to discuss my treatment options at the end of this week.

[lynnesParticipant]

Thank you Annette.  I thought I had read on one of your posts that you lived in The Netherlands.   I am not sure of the availability of Revlimid in the UK but have arranged for a second opinion over here next week with a leading myeloma specialist to try to get my head around all the options.  At the moment I feel as if I am an onlooker, that this is someone else’s nightmare and that I will wake up soon!
Best wishes
Lynne

[lynnesParticipant]

Thank you both for taking the time to reassure me.  I am not confident enough to do anything other than I am told at this frightening time, although I am trying to gather as much information as I can.  The more I know the less scared I might be!

Annette, is Revlimid easily prescribed in the UK?  Reading up on it, it seems that it is prescribed when other treatments have been tried?

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