[marion1Participant]

My husband has just been diagnosed with myeloma he has been asked to go on the trial where they replace the thalidomide with lenalidomide he is unsure what to do as they side effects seems to be worse on the latter has any one been on this trial and what side effects have they had on lenalidomide I would be grateful for any offerings.

[PerkymiteParticipant]

Sorry I cannot help. I am sure I have heard mention of Myeloma XI trial before so perhaps someone might have some infor on it.

Kindest regards
David

[DebsParticipant]

Hi Marion,

I'm currently on the Myeloma XI trial and got the revlimid (lenalidomide)branch of it. It seems like the side effects are different for everyone but I have to say that I have had minimal side effects in the grand scheme of things. Tiredness, tenderness and some breathlessness and awful tastes seem to have been the worst for me (oh and a bit of bruising but not much). BUT I think I'm probably about to go onto the velcade branch of the trial as I have stopped responding to the revlimid so perhaps a lack of side effects isn't such a good thing!!!

I think everyones views are different, but mine was that it would have been great if it had worked for me! Revlimid is meant to be a really good drug so all in all, to be offered it early seemed quite lucky to me. Now I'm just a bit gutted it hasn't worked.

All the best to you and your husband.
Debs

[eveParticipant]

Hi Marion My partner started on trials today he was allocated to ctd group.Have found the last couple of weeks mind blowing.So much to take in and so many visits to hospital.Then coming to terms with illness and how it will effect future life.It is early days for us,the amount of tablets is mind blowing.CTD drugs then pain releave plus tablets for kidneys.Have you any good ideas how to do an easy chart,?

[BADGERParticipant]

hello Eve

I had CDT so I can relate to the problems also had kidney damage so have had to take drugs for that I found that taking the DEX in the morning and the thalidamide at night I was not awake all night which seems to happen with DEX if witha glass of milk helps the dex down I know some people take it with yogurt I took all my other tablets with food except the cyclophosamide which has to be taken on an empty stomach coming to terms with the illness was really the worst for me better now but still have down days I have had it for two years now getting on with things much better we are going on holiday in two weeks to the canaries so you can get on with life after treatment

Kind Regards Jo

[marion1Participant]

Hi Debs

Thanks for your reply my husband has entered for the trial and will hear next week what group he will be on Thanks for your help and all the best to your. Marion

[PerkymiteParticipant]

Hi Eve, I assume you are referring to a chart to ensure you take your pills in the correct order and time. I use a Pill wallet I purchased in Boots, it only does one week but I find that is ok. Every Monday I pop all my pills into their little slots for use that week. I find it a great help, I have a terrible memory and sometimes I did not know whether I had taken a pill or not. With this system you just check your wallet to find out what ones you have taken.

Hope this helps
Kindest regards
David

[eveParticipant]

hi david

Have two boxes for pills,My partner insist on doing his own pills,but there are so many,some days its 45 pills other days as little as25.Plus pills from our own doctor.We have agreed that I check them as sometimes he can be confused becuase of condition.there has to be an easy way of doing this.

I hope someone can tell me of an easier way.At the moment i have two charts

regards eve

[brochoParticipant]

Hi David I make a chart when I begin a new course of meds Just straightforward boxes but I leave room so I can tick off when I have taken them , the charts the pharmacy gave me didnt have space for this .I keep meaning to get a pill organiser but havent so far The other day I was told that these organisers are not safe to use with toxic chemo drugs such as Velcade and Revlimid , apparently you should leave them in their packaging until you take them . love Bridget x

[GillParticipant]

Hi Eve

I do hope your husband's treatment goes well. When my husband was on his first cycle of CDT I designed a chart based on "publisher's" calendar. Changed to weeks and days rather than months

I have tried to attach an example and a template here but the system keeps telling me that they have an "invalid extension"

I managed to email to myself so could try to email it to you if you want

Kind regards Gill

[PerkymiteParticipant]

Thanks for the heads up Bridget on whether the pill boxes are suitable for Revlimid etc… I will check that with the Pharmacist if/when I get to that stage.

Thanks also for the offer of the Publisher chart Gill, however I am just no good with charts and tick boxes. I take the pill forget to tick the box then cannot remember whether I took the pill and get into a right mess. Setting them out in the pill wallet on a Monday is the simplest for me. Yes, the Forum does not accept Publisher files I have tried it before.

Eve, 45 pills A DAY, PLUS pills from your doc, that is awesome, the maximum I am on at present is weekends when I take 9 a day, 4 from the hospital and 5 from my Doc

Kindest regards

David

[eveParticipant]

To gill and also dave.

Thanks for info on publishers calender I will try that.
The pills are something 10 cyclo 1st 8th 15 day 20 dex run for 4dayd thalid 2 everday,plus sickness pills.that is just from hospital the rest comes from doctor.We have been told that they have put him on the intensive pathway.This is from a man that never took a pill until he was sixty,never even had so much as a headache ,he was walking around with 4 compression fractures.I feel so angry that my doctor did not listen to me 6 months ago.

[eveParticipant]

HI jo

Interested about going on holiday,how do you manage insurance wise? We have been told once my partner gets use to drugs we can go off in motorhome,but he is on morphine ,and only 10 days supplied at a time,so France looks out although for us France is nearer than most counties,and I am happy to drive in France.The customs might have somthing to say about controlled drugs in van. regard eve

[JetParticipant]

Hi Marion

I am also on the Myeloma XI trial on the RCD treatment.

When my girlfriend and I read the list of Very Common, Common, Uncommon, and Rare side effects on the patient information leaflet, all I could do was burst out laughing… I mean it covers just about every possible symptom ever!

The best bit was at the end of the VERY long list… "… and low calcium consequently leading to changes in kidney function, heart beat, seizures, and sometimes death. If any of the side effects get serious… please tell your doctor."
"Hi doctor, I'm just calling because I have a serious case of death!"

Sorry if my sense of humour is a bit on the dark side, but what else can one do?!

I have been taking it now for one cycle and really this has been the worst drug of the three for me. No problems with Dex at all, but with the Revlimid, I have dry mouth and skin, especially my lips chapping; shaking/trembling internally; severe clamp-like headaches; dizziness; runny nose; a bitter taste in my mouth which affects my appetite as everything tastes bitter/wrong; and tingling under the skin, mostly in my hands, feet and around my mouth and nose? a bit like being constantly very mildly electrocuted, or the feeling when a dentist?s anaesthetic is wearing off. To me it feels like when you shake a bottle of pop and it just waits there fizzing before you take the top off.

Having said that, it does seem to be getting better already. I reckon my body is adapting to it. And on the very positive side, my blood tests are already showing a noticeable improvement. My specialist nurse keeps reassuring me that the first 8 weeks (2 cycles of treatment) are the worst and it will get better. I got very miserable in the first couple of weeks.

I don't know if this is any help at all and I can't compare it to Thalidomide as I've not tried anything else, but while it's not been nice, I'm okay and glad it seems to be working. And the week off at the end of each 4 weeks feels great!

As we are all seeing, this disease is so person-specific that everyone will have a different experience, and I'm sure your husband will make the right decision for him.

I didn't know about keeping Revlimid in its packaging till you use it, so I put it in my drug box… Not gonna worry about that one.

[MinParticipant]

Hi Eve at the outset of his diagnosis Peter was on a similar quantity of tablets, due to chronic kidney failure, actually called nephrotic syndrome. In addition to all that he had had a heart bypass when he was 52 due to a congenital defect. The massive doses of morphine too for the crushed vertebrae meant he had to have two pill boxes and I had to make a chart out to take to GP. (you know what its like in a big practice never see or hear the same Dr twice.)
The dosages were changing weekly depending on responses to various drugs it was a nightmare. Watching my previously strong bloke shaking/trembling uncontrollably as he sorted out his boxes was heartbreaking.
He is much better now and on his third lot of medication for mm. So only one tablet a day and one at night. (not counting the 4 days dreaded dex) The only serious side effect of the current one Revlamid is bowel problems. But controllable.
Min

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