[KeithH17Participant]

Hi,
six days into treatment and feeling very tired. I have a general numbness throughout my body and this morning I found it very difficult standing up without passing out. Started to feel sick so had to lie down which helped things settle a little. Is this going to be it from now on I wonder? Maybe when my body becomes more accustomed to the Revlimid then things will improve? Here's hoping.

Keith.

[VickiParticipant]

Hi Keith,

I have asked Colin how he was on revlimid. He had 7 cycles of it along with dex and cyclphosmhide. The first cycle he was very very tired and spent a couple of days in bed at one point. He went though peaks and troughs of having energy and being able to go to work on and off, but then completely wiped out by six thirty at night. There seemed to be an underlying tiredness all the time, but inter dispersed with a lot of reasonable activity. There were days when Colin was really chirpy and could do quite a bit. I don't thInk he was at the passing out level but he was wobbly and shaky at times, not all the time though. Worst thing for him was that it really did it's job! If that makes sense. It whacked his immune system down each months much that he normally felt worse at the end of the cycle, not at the beginning. For Colin it was more the dex.

Am sure it will settle down once you get acclimatised. By the way thanks again for your information in SCT,it does mean a lot.

Good luck

Vicki

[tomParticipant]

Hi Keith

Now I remember Phil Kelly had a problem with passing out? not sure if Phil was on same treatment?? but I would phone your Contact Nurse.

Hope your soon sorted

Tom "Onwards and Upwards"

[KeithH17Participant]

Thank's Vicki/Tom
Didn't quite hit the deck Tom but it was a close run thing. If I hadn't got back on the bed I'd have been out cold.
I have also developed a pain in my lower back which seems to come and go.
I've met Phil a couple of times and wondered how he was doing,I think he relapsed around the same time as me first time around. This tiredness thing is the worst ever but according to the Nurse it's something I just have to live with.

Keith.

[andygParticipant]

Hi Keith
Sorry your struggling with the Rev/Dex. I find I have half a day to do what I want to do then I get tired around 1pm and have to sit in front of the tv and fall asleep during the afternoon film. I haven't at any time felt like passing out though! Hopefully it is something that will pass.
You may improve as you become use to the drugs or they may reduce the dosage – either way we wish you well
Andy & Steph xx

[JentayParticipant]

Hi Keith, I'm on my 17th month of Rev and Dex and assure you that it does get easier as your body adjusts to the drugs. I assume you are having regular BP checks as Revlimid can affect your blood pressure (low BP can cause you to pass out)If not, ask your nurse if she will check it for you.

I can't remember suffering from excessive fatigue during my first month's treatment but I did have terrible muscle pain and felt most unwell. I was on 25mg of Rev so I asked my consultant if we could lower the dose and have been on 15mg ever since. That seems to suit me better.

Make sure you take your Rev last thing at night too so that you get a good sleep. There's no point feeling sleepy during the day when you want to get out and about! I feel fine (apart from the usual aches and pains caused by the damage to my spine)I work, look after my grandchildren, and go on holiday as often as possible. Long may the Revlimid work, is all I can say.

Hope it works as well for you too.
Jen.

[KeithH17Participant]

Thank's Andy and Jen for your replies,apart from the one incident Sunday morning I've not since had the passing out feeling but I get a constant feeling of wanting to pass water through the night which interrupts my sleep.
I take Rev early morning so maybe the idea of late at night might be the answer to my sleeping problem.
These drugs are scrambling my mind and I can't think straight. I'm in a permanent state of confusion with no power to reason,what's going on here? Go for bloods Tuesday Zometa Wednesday then see Doc Thursday. It will be interesting to see if the PP's are falling.

Take care all…Keith.

[DaiCroParticipant]

Hi Keith,

I am on week 3 of Cycle 5 Rev & Dex. I take my Dex on a Tuesday and like Andy I have the morning to myself and then pretend I'm a broccoli for the rest of the day, vegging out in front of the TV or computer.;-)

I sweat… profusely. On my second cycle I had to go in for some interim bloods… on a Tuesday. The phlebotomist thought I was having a heart attack and several people hovered near me in concern. I changed my shirt/'T' Shirt four times while in the clinic and I won a 'look like a beetroot' competition hands down. It was at this time, with my consultant on holiday, that I demanded an X-Ray on my shoulder… it was granted with the registrar who granted my wish looking terrified to come near me because I looked so red and bloated and ill. My two fractures were discovered but the staff in the radiology dept., insisted that I have a wheelchair to take me back through the hospital to my car.:-S

I jest… but the descriptions are spot on. I stay that way until approx: 11pm when I suddenly dry up and return to near normal. The Rev is more long term but each cycle finds me a little better and a litle less tired.. but even so, any exertion leaves me tired and sweaty and needing an hour or so's rest and recuperation. Hopefully that too will get beter the longer I am on the treatment.:-)

Look at the positives Keith:

[quote]I'm on my 17th month of Rev and Dex and assure you that it does get easier as your body adjusts to the drugs[/quote]

Keep on taking the tablets and follow Jen.8-) 😀

Dai.

[KeithH17Participant]

Thank's Dai,
What dosage of Rev/Dex are you on? I have started at Rev 25g/40g Dex 4 days on/off.
Will taking the Rev at night really make a difference to the fatigue issue?
I am also suffering from abdominal cramps although my bowel movement is ok.
As for sweating well yeah I get a bit of that too. If only this blooming weather would improve,can't remember the last time I saw some blue in the sky,oh yes I can when we flew to Jersey 2 weeks ago LOL.

Good health to all.

Keith.

[andygParticipant]

Hi Keith
I take my Rev just before bed. Can't remember if I was told to or I just assumed that was the right time because that's when I was told to take my thalidomide when I was on it. It may of been in the Rev box paperwork along with the side effects – I sometimes read them when I'm bored 😉

Hope everything turns out well this week
Andy

[DaiCroParticipant]

Hi Keith,

Further to Andy's reply I too take Rev at night but not quite so late. I recall being told to take Dex in the morning and Rev at night. As it happens I take my meds en bloc… circa 8am and 8pm. I too am on 25mg Rev and 40mg Dex but my Dex are taken once a week and my nominated day is today (Tuesdays).

Sweating for 12/16 hours is the worst side-effect as posted earlier and apart from general fatigue (slowly getting better each cycle) and my mantra 'Rev & Dex & Me In Perfect Harmony' is slowly forming into a universal truth. I do feel in harmony… as long as I understand my limitations and the need to allow the meds to do their thing.:-D

I find taking my meds around 8pm allows them to settle into the system by the time I need to sleep. Of course I have to make allowances for Dex but paradoxically although I take my Dex on a Tuesday it is normally later in the week (Fridays/Saturdays) that I get the full 'Dexeffect' TM.

I'm learning to create a nighttime routine that I try to stick to… like avoiding TV and computer activity after 11pm in favour of reading (though I do allow Kindle). It seems to be working… along with a small flask of Horlicks to be taken if needed… I always take it.;-)

Like Andy I too read the instructions and side-effects if I feel inclined to a light horror story… I always find myself hoping that my consultant and my hospital pharmacist know what hey are giving me and the relationship between the drugs… because according to the individual drugs side-effects charts I am risking life and limb in mixing some of them together.:-) :-0

Que Sera.

Dai.

[KeithH17Participant]

Cheers Dai,
Been to the Hospital today for blood tests and told the nurse about the fatigue and now extreme diarrhoea and abdominal pain which is keeping me awake. Was told if I have any other bouts then I have to take a sample to the Hospital on Thursday when I go for my Zometa injection. Bloods haven't changed very much apart from PP's which have gone from 22.40-29.66 in the space of a month. This reading was before the start of Revlimid so it will be interesting to see the next reading taken after the start of treatment.

Keith.

[HelenParticipant]

Hi Keith
I've had no end of fatigue and disrupted gut since being on Revlimid. Now I'm having a break after the latest bout to see if it settles down. I will still go back on it if I can even though I think the side effects are quite tricky to manage.
Love Helen

[PhilKellyParticipant]

Hi Keith, sorry to hear you have hit the rocks again. I did get passing out symptoms on Velcade and it turned out to be nerve damage caused by the Velcade in my parasympathetic nervouse system…. that affects your blood pressure response to things like standing up. It is known as Postural hypotension… basically your body doesn't react quick enough to standing up and your brain doesn't get enough oxygen. Revlimid could potentially be causing the same problem! Important that you get it checked out before the nerve damage is potentially irreversible. It is an easy test; you need to do your blood pressure lying down, then sitting then immediately after standing… a sudden drop on standing indicates postural hypotension. I ended up in hospital and and on some wierd blood pressure rasing drugs and surgical stockings on before I could get upright again. My team had to consult with the geriatric team to get the drug dosing right! This ia a pretty rare symptom, but don't be fobbed off…. it may just be that your team (like mine) haven't seen it before.

I am doing ok by the way Keith… second SCT last August, and continuing slow recovery from then, but all key indicators are ok!

[DaiCroParticipant]

Hi Keith,

I meant to come back to your earlier post and Helen has just reminded me but I too sometimes get stomach cramps which are a signal to head west… it can get quite uncomfortable before it gets sorted but I don't just get the cramps in isolation.:-|

Dai.

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