[DaiCroParticipant]

I realised yesterday that while I reported on my hospital stay with infection and the side-effect of my swollen leg, I haven't reported on Cycle 4. So:

I had an extra week's rest off Velcade because of my infection so it fell that I had a consultancy before starting Cycle 4 (usual practice but squeezed in late). My consultant dismissed my swollen leg as 'non Myeoma related' but agreed to reduce my dose once again.:-)

V-Cycle 1: 2.77
V-Cycle 2: 2.77
V-Cycle 3: 2.10
V-Cycle 4: 1.49

… and I can tell the difference big time.:-D

Min has made an excellent point elsethread about the balance between efficacy (of the main drug – in this case Velcade) and the quality of life afforded by the reduced side-effects. Min concluded that it might be better to have lower doses from the outset and fewer side-effects because the present formula of hitting hard with big doses in the beginning only makes the patient's quality of life throughout the Cycles very poor indeed. 😛

My experience has been mixed. I returned a very good result from the first 2 cycles but, although my dose was reduced for Cycle 3 due to my legs and PN in my hands – but the damage had already been done and I felt very, very ill throughout Cycle 3, culminating with a week in hospital with an infection and a HG of 7.3.

So Cycle 4 has started with a dose of 1.49 + the usual dose of Dex, which has remained constant throughout… but… The Dex-effect has been lessened dramatically – inasmuch as my sleeping patterns have been normal… no, better than 'normal', which is usually 'poor'… yes, better, even good…. and I haven't been as 'snappy' or feeling 'hyped'. I haven't even felt 'wiped-out' although my legs have restricted movement and I still get tired very quickly.

So, I have had 3 infusions of 4 – and so far, excellent in terms of side-effects. Thursday will end this Cycle and then a 'rest' of 10 days before 'hopefully' Cycle 5.

My consultant has stated that the treatment may end here, at Cycle 4, if my leg has worsened or even stayed the same but, like her, I am beginning to believe that the leg condition may not be directed Velcade related… that it may be as is has been previously, prone to DVT and needs to be treated with either injections and a compression stocking or even the horrible Warfarin… I have a consultancy on my rest-week Monday (next) so I can discuss that then. My usual consultant will be on holiday so there will be a 10 minute hiatus while the stand-in catches up on my notes, supplemented by my explanations. :-/

My consultant did throw in the possibility of switching to once weekly infusions… which will stretch the Cycles from 3 to 6 weeks… but if necessary then bring it on but… hopefully, if the last Cycle is anything to go by, then this measure might not be needed.:-)

So, up to date with a report back at the week-end and after the consultant's meeting on Monday. If anyone is starting Velcade and is unsure of the processes and procedures I am quite happy to help where I can… especially in regard to what questions to ask when problems, or potential problems, begin to arise. 😎 🙂

Dai.

[mhnevillParticipant]

Hi Dai

It sounds as if quality of life is slightly better for you. Isn't it difficult sometimes to know what is MM and what is down to other factors. Worse when you are older, I can tell you – because then you get "of course, at your age…!"

Do hope reduced level of Velcade does some good and you are able to finish the Course.

Enjoy what life you can – what a blessing you are getting some sleep. Wonder what it is about this combination that has made the dreaded Dex behave itself?!

VERY best wishes.

Mavis

[DaiCroParticipant]

Hi Mavis, thank you for replying and your support. 🙂

I don't know why Dex has suddenly transformed… perhaps it can get on with its job quietly and more efficiently because it hasn't got to fight against the larger doses of Velcade… more harmony, less harassment… perhaps.:-)

I'm concerned with the swelling/discomfort in my left leg but hopefully I will get the medics to sort something out for the interim until I see a consultant on Monday – some Enoxaparin/Heparin injections to take home with me at the very least – to prevent anything nasty occuring over the week-end.:-P

Last infusion of Cycle 4 tomorrow… and if the side-effects stay about the same I will be a very happy bunny indeed. (Touching my wooden desk lightly… but firmly).

Thanks again.

Dai.

[BADGERParticipant]

Hello Dia

glad you are now feeling a bit better lets hope the leg is not a Velcade problem and can be sorted out sinply:-) I have been reading up about the research done in american they have come to the conclusion that a lower dose of Velcade over a little longer period has had the same results but with a lot less side effects I hope our consultants start to take note one size does not fit all:-/ . Had a good holiday in wales NO RAIN came back with a bit of a suntan went up snowdon but only on the train.

Love Jo x 😎

[meeuuParticipant]

Hello there Dai,
That is a pretty detailed account, well done on your attention to detail. My wife, Cecilia, has been on Valcade since last November and she gets an infusion every second Friday (no Dex due to problems with it 2 years ago). Thank goodness she is doing quite nicely now and the dreaded side effects (PN, mouth, nose and eye infections) have practically all gone, just a bit chesty for the first day or so after treatment. Her only problem (which is not a problem when compared to what she went through for thr first 3 years) is the constant tiredness. She spends most of her time in bed and sleeps quite a lot. I think that this has more to do with the MST (morphine). So Dai, take heart, you are doing well and I sure hope that the leg complaint deminishes PDQ.
Best regards,
John

[gina45Participant]

Hi Dai, i hope you are starting to feel well in yourself, i cannot even imagine what you people with mm have to go through each day of your lives. I am a carer and can see what my mum is going through but its still not the same as living with it. Its great to hear your updates you are always so upbeat. So keep your chin up and i hope things are get tbetter for you
Take care
Gina x

[MinParticipant]

I Cant take credit for my thughts Dai, I read it and watched a video from usa that Jet suggested there had to be more consideration for the quality of life whilst treating MM and it also said the results on lower doses of drugs where just as if not more effective than hard heavy doses.
In any event, I am pleased your feeling much more chipper and once you get some answers to the leg pain I am sure you will be even more chipper .
Peters experience of Velcade was good and he went to work daily while on it even though he had DVTs such a shame it stopped working as it showed such promise initialy for him. It didnt stop him getting on with his life apart from tiredness.
Which I have now so must go sleep. While he is wide awake for a change engrossed in CSI. I cant bare it I worked in a CSI office for 14 years and find fault with everything they do. I am sure Sarah feels the same when she watches Holby City my favourate.
Goodnight
Min

[SueMParticipant]

Hiiiiiii Dai,

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2 weeks on CDT,I then went to twice weekly for @ 8 cycles
I hag a good responce to that cycle,and achieved at end a very good partial response with the treatment,bmb neg for plasma cells,pp1.2 and normal freelights

I just started treatment 2 and i'm doing single weekly velcade with 500mg cyclophos weekly and 40m ex per week,i asked for 3 on 1 off that was shown successful in research but consultant wanted 4 on 1 off(propylactics daily acycloveir,penicillenv,fluconazole,lanseprezole)

I started earlier this time pp was only 33 but rising by 30 % each month then i fractured a rib brushing my teeth !!

Next cycle will be "nontherapeutic2 dose of 2 weeks on 1 off to allow me to get away to Wales for 10 days 🙂 then will review what for cycle 3

My first months results are better than i expected ,i realise next month may mot be as thats what this disease is like but i worry a lot about the huge doese given like 1 size fits all and it doesnt.

We have the benefit of the free light test which shows the myeloma activity occuring at the time unlike the pp test that shows what was happening 2-3 weeks ago.

i sent off my blood early because i can and after 6 days in i could see my fre lights had reduced by 50% ,gave me so much peace of mind

Lower doses have proven to be affective i don't know why so many are not offered them??

I'm 20mg 2 days a wek and now will be 10mg dex twice a week as my dex myopathy reoccured last week.

Has this leg had a venogram to see exactly whats causing it?

hugsss Dai

Sleepy Sue 🙂

So the change in dose should make u feel so much more human and also kick the myeloma s but 🙂

[SueMParticipant]

Hiiiiiii Dai,

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2 weeks on CDT,I then went to twice weekly for @ 8 cycles
I hag a good responce to that cycle,and achieved at end a very good partial response with the treatment,bmb neg for plasma cells,pp1.2 and normal freelights

I just started treatment 2 and i'm doing single weekly velcade with 500mg cyclophos weekly and 40m ex per week,i asked for 3 on 1 off that was shown successful in research but consultant wanted 4 on 1 off(propylactics daily acycloveir,penicillenv,fluconazole,lanseprezole)

I started earlier this time pp was only 33 but rising by 30 % each month then i fractured a rib brushing my teeth !!

Next cycle will be "nontherapeutic2 dose of 2 weeks on 1 off to allow me to get away to Wales for 10 days 🙂 then will review what for cycle 3

My first months results are better than i expected ,i realise next month may mot be as thats what this disease is like but i worry a lot about the huge doese given like 1 size fits all and it doesnt.

We have the benefit of the free light test which shows the myeloma activity occuring at the time unlike the pp test that shows what was happening 2-3 weeks ago.

i sent off my blood early because i can and after 6 days in i could see my fre lights had reduced by 50% ,gave me so much peace of mind

Lower doses have proven to be affective i don't know why so many are not offered them??

I'm 20mg 2 days a wek and now will be 10mg dex twice a week as my dex myopathy reoccured last week.

Has this leg had a venogram to see exactly whats causing it?

hugsss Dai

Sleepy Sue 🙂

So the change in dose should make u feel so much more human and also kick the myeloma s but 🙂

[SueMParticipant]

Hiiiiiii Dai,

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2 weeks on CDT,I then went to twice weekly for @ 8 cycles
I hag a good responce to that cycle,and achieved at end a very good partial response with the treatment,bmb neg for plasma cells,pp1.2 and normal freelights

I just started treatment 2 and i'm doing single weekly velcade with 500mg cyclophos weekly and 40m ex per week,i asked for 3 on 1 off that was shown successful in research but consultant wanted 4 on 1 off(propylactics daily acycloveir,penicillenv,fluconazole,lanseprezole)

I started earlier this time pp was only 33 but rising by 30 % each month then i fractured a rib brushing my teeth !!

Next cycle will be "nontherapeutic2 dose of 2 weeks on 1 off to allow me to get away to Wales for 10 days 🙂 then will review what for cycle 3

My first months results are better than i expected ,i realise next month may mot be as thats what this disease is like but i worry a lot about the huge doese given like 1 size fits all and it doesnt.

We have the benefit of the free light test which shows the myeloma activity occuring at the time unlike the pp test that shows what was happening 2-3 weeks ago.

i sent off my blood early because i can and after 6 days in i could see my fre lights had reduced by 50% ,gave me so much peace of mind

Lower doses have proven to be affective i don't know why so many are not offered them??

I'm 20mg 2 days a wek and now will be 10mg dex twice a week as my dex myopathy reoccured last week.

Has this leg had a venogram to see exactly whats causing it?

hugsss Dai

Sleepy Sue 🙂

So the change in dose should make u feel so much more human and also kick the myeloma s but 🙂

[DaiCroParticipant]

Hi Sue,

Thanks for your update, its good to see how others cope with their treatment regimes.:-)

I spent 4.5 hours in the Daycase Unit yesterday – the last 2 hours waiting for the single busy Doctor on call to get back to me on what other treatment to take home with me as well as the 5 day course of blood thinning Enoxoparin injections… I had left a note with my No.'s and was about to leave when he turned up and said 'nothing else'… 2 hours.:-(

At least I had my Velcade… so that's Cycle 4 finished. 😎

I've got to go back in for bloods on Monday… apparently a 5 day course of blood thinners can lower all the blood levels so they want to check… which suits me. My leg has eased… ever so slightly… but it is no so much an 'iron bar' as yesterday… but still a long way from normal. I asked if I should exercise or rest (I could hardly walk yesterday and today is barely better) and he said 'Yes' :-S … I wanted away so I smiled and left. I have decided on rest with a few stretching walks between the bedroom and living room.:-)

The most frustrating part of the day came earlier on where the Doctor had arranged a Vennogram on the leg for 2pm. It was cancelled at 2.10pm… the participating Doctor having to go to another hospital at 2pm…) I got the feeling from the nurses that he could have slipped me in – a buggy was waiting to whisk me away (I was actually strapped in) but his session normaly ends at 2pm so that was that – apparently I will be sent an appointment in the post – despite my 'busy' Doctor saying he wanted it done immediately – the first time I have been felt let down by Nottingham in 2 years. 🙁

My 'busy' Doctor was away from the Daycase and didn't know – which is why I had to hang on until 4.55 before catching him as I decided to leave.

Ah well… at least he did say it wasn't presenting as a typical DVT… although he would have been happier having that confirmed by the scan!:-/

Roll on Monday… with hopefully some easement on the leg in the meantime.:-)

Dai.

[eveParticipant]

Hi Dai
The main thing Dai is you are having the treatment ,the injections,a scan will show how the leg is doing,so try to have agood weekend,massage does help easy the pain,i spend a lot of time on Slims legs,as it help circulation ,so it is worth a try,complains some times that i am heavy handed!!!.:-P
love Eve

[DaiCroParticipant]

Okay – Blog On!

I have my consult on Monday, previous to starting my next cycle of Velcade = Cycle 5. Cycle 4 slipped by almost unnoticed due to the kerfuffle with my left pin but overall it was a very good cycle… by far the best regarding side-effects… its just a matter of seeing if the reduction in strength (Velcade – from 2.1 to 1.49) has actually produced any results in terms of downward shift.

Start of treatment 264 kappa light chains.

Cycle 1 (Velcade 2.79) – no results recorded
Cycle 2 (Velcade 2.79) – 13 kappa light chains
Cycle 3 (Velcade 2.10) – 11 kappa light chains
Cycle 4 (Velcade 1.49) – to be declared

The reduction between Cycles 2 to 3 was due to Peripheral Neuropathy in my hands and an increase in the existing PN in my feet and calves. Cycle 3 was most unpleasant throughout and ended up with a weeks stay in hospital with an unknown infection. A further reduction was made for Cycle 4 and caused no problems – my consultant was adamant that the problems with my leg were not MM related and I concur – after the best part of 3 weeks in bed during Cycle 3 followed by a fourth week in bed in hospital I cannot believe that my legs… and my left leg in particular, were not affected. If my leg had been anywhere near normal – I cannot walk that far even at the best of times… although I do so without the aid of sticks etc. 😎

Anyway… back to the Velcade Blog. My consultant said last time that if my problems continued following Cycle 4 then she might have to stop treatment or possibly reduce it to 1 injection per week… but Cycle 4 was a success regarding quality of life and side-effects… its just a matter of seeing if the strength of the infusion is strong enough to reduce my kappa light chains from their present level of 11.

264 to 13 was miraculous – 13 to 11 was rather measly considering but my consultant said that 18 was the magic marker in terms of what constitutes 'Complete Response' and therefore 13 to 11 was quite good. 😉

So her plan (which I endorse) is for me to see out the 8 Cycles… or continuing for as long as there is a reduction in kappa light chains. For me, as long as it brings it down by 1 or 2 each time I will be very happy. That makes 4 more Cycles… if there is a median of 1.5 reduction each time i will finish my course of Velcade on 5 kappa light chains… but that/this is all supposition. 😛

I could ostensibly reduce my kappa light chains to 0… or they might plateau… in which case I believe my consultant will call it a day. Either way I will then I will be sent out into the world to live a drug free existence until the kappa light chains start growing again. I don't know what others have been told in regard to possible lengths of remission but at the beginning of my treatment my consultant said that once i had achieved CR I could get between 6 months to a year. My first reaction was the thought of 8 Cycles (24 weeks) of unpleasantness for the same amount of relative good health… but I'll take it… and then I'll move on.8-) 🙂

On a personal note – I have wavered this summer under Velcade – negativity has raised its head and it has been very, very easy to give into negative vibes without realising it… but thankfully I have a good group of friends… friends akin to family… right here on this board and they have kept a watchful eye on me and given me food for thought when my mind was tired and hungry for positivity and even a small kick up the backside when I needed it most (thank you Eve) and I now truly feel back on top of my game and ready for whatever, whenever, wherever. As the song says:

'I?m going to drift away, waving at shadows of Angels
I?m going to bippetty bop, to the end of each day
I?m going to shimmy and shape myself feathers of Angel wings
Find myself a hill? run, stretch and then fly away'

But I hope that I am many, many months and many, many air-miles away from having to search for my hill yet. 😎

Dai.

[gina45Participant]

Sounds like its been a long rocky road Dai, i hope that you are feeling ok now and here is to many more years and many more miles 🙂 Gina xx

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