Hi Dai,
I shall follow your progress with interest as I am shortly to embark on the same treatment. After 36 rounds of Revlimid, the cancer is on the rise and my consultant has applied to the CDF for funding for Pomalidomide for me. I shall be the first person in my area to receive it so everyone is very excited, me included!
If it is half as effective as it's claimed to be, and gives me the same quality of life that I have enjoyed for almost three years while I've been on Revlimid, then I shall be more than happy.
Good luck with your treatment. May many more of us get the chance to use this new drug.
Jen
Tina, I haven't suffered from a rash while taking Revlimid but I did have a very bad one when I took Thalidomide and had to stop taking it. (It also affected my vocal cords and made my nose and mouth go numb but that's another story!) Hopefully, your body will adjust to Rev after your break.
Jen.
Hi Sue,
You don't say what dose of Revlimid and Dex you are on. I've been on Rev/dex for 28 months and in the first month found the recommended dose way too strong. Rev was dropped at my request to 15mg pd and dex to 20mg x first 4 days of cycle (I later dropped this to 10mg x 4days as it makes me feel very dizzy and shaky)
I also refused to take the other catch-all drugs that my consultant wanted to dish out. So apart from a daily low-dose aspirin, that's it. With so many powerful drugs whizzing around your system there is bound to be a conflict so do be very carefull and choosy about what you take. And as has already been stated, read the information included in the packets. It can be a big help.
Try not to get too despondent. The treatment does work and I've enjoyed an excellent quality of life since I've been on it.
Jen
Hi Jill,
Sorry to disagree with your mum's doctors but Revlimid does cause diarrhoea even if it isn't listed on the side-effects sheet (hmm, must check that!) I suffer from it periodically, especially after I finish a cycle, and I know that the Revlimid is the cause as I don't take anything else apart from Dex and a low-dose aspirin. (I'm on cycle 27 so I do have some experience of it!)
Get some Immodium from the chemist for your mum – I always keep the instant tablets in my bag just in case. That will sort it out.
Good to hear that it's working well for her, so do encourage her to keep on taking it. There's always something available to sort out any minor side-effects.
Jen
Hi Dai!
I was diagnised with MM at roughly the same time as you but my experiences are a million miles away from yours. After months of severe back pain, which I assumed was due to doing too much gardening etc following the death of my husband a few months previously, I was whizzed into hospital and underwent a full set of tests. Two weeks later I was informed that I had MM and treatment was commenced.
I live in the north west and cannot fault the care and consideration I've been shown on every level. I do get down at times, especially when I'm in pain as I have a lot of bone damage, but the treatment I've received has enabled me to live a near-normal life and that is something I am truly grateful for.
It's appalling that you had to go through such a terrible time at the start of your treatment. Here's hoping that it all goes right for you – and us all – from now on.
Jen
Hi Lorry,
Feeling spaced out while on chemo is pretty normal. It's also par for the course when you're taking steroids (you're probably having both – lucky you!)
Sadly, I don't have a cure for the feeling but it should get easier as your body adjusts to the various drugs, although Dex-head is something that still affects me and I've been taking it, on and off, for over four years.
It's worse when I stop taking the Dex (I take it for the first 4 days of my treatment)and the following couple of days, when I stop, I feel as if I can't do joined-up thinking. I try to ensure that it happens at the weekend when I don't need to drive.
A lot of these drugs mess with your head so don't feel that you are alone. We've all been there and lived to tell the tale. And moan!
Best of luck,
Jen.
Dai,
I have one rule: I don't take any meds that may be unnecessary. This means that I don't take any of the handful of pills doctors love to prescribe on a "just in case" basis.
I went through the list of meds when I started on Revlimid two years ago and told my consultant what I was willing to take and what I wasn't. I just take Dex for 4 days at the start of each cycle plus Revlimid and a low-dose aspirin. That's it. I won't take any prophylactic drugs as they often cause nasty side effects.
You should definitely have a word with your consultant and voice your concerns. Taking a cocktail of drugs which may conflict with one another is asking for trouble and let's face it, we have enough to contend with without making matters any worse.
Hope you are feeling loads better very soon,
Jen.
So sorry to hear that the SCT failed after a relatively short time. I had Velcade plus dex about 3+ years ago and it was extremely effective. I had 6 cycles and it's effects, post treatment, lasted 14 months. I felt a bit tired when I was on it and I did need a blood transfusion at one point but otherwise it was fine. I hope it works well for you too.
I believe Pomalyst (Pomalidomide) has just been passed by the FDA. Let's hope it isn't too long before it's available here as it will be another line of treatment for us all.
Jen
Hi Nettie,
So glad the oil is working for you too. It makes such a difference to how we feel if our hair is looking good, doesn't it?
Jen
I'd recommend L'Oreal Extraordinary Oil. It's a light flower oil, not at all greasy, which you apply to either wet or dry hair. I rub a couple of drops between my palms and apply it to my hair before I dry it. Another tip is to lower the heat on your hair dryer to a medium setting.If it's too hot then it will make your hair drier than ever.
After 20 months of Rev and Dex my hair was becoming very dry and brittle but the oil has restored its life. It costs about £10 a bottle from the styling section at Boots and is worth every penny.
Hope it works for you too,
Jen.
Hi Gill,
I've been having monthly infusions of Zometa for the past four years via the NHS and I've been told that I will continue to have them for as long as is necessary. Cost has never been mentioned so I had no idea that Zometa was more expensive than anything else. Research has shown that Zometa works better for people with mm than other bisphosphonates so don't let them fob you off with a cheaper alternative.
I have no idea if you can switch to NHS care after being a private patient but I would certainly enquire about doing so. After all, you and your husband will have paid the necessary contributions so why shouldn't he receive the help he needs.
Best of luck,
Jen
Hi Keith.
I have to admire your fortitude if you are managing to take all that Dex! I refused point blank to take 40mg of Dex for 4 days each month at the start of my treatment as I know what it does to me. I took 20mg x 4 days and recently have dropped it to 10mg x 4 days. How long is this regime of yours going on for? It seems very harsh to me.
Jen
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.
Hi Debs,
I have been taking Revlimid for 10 months and soon discovered that I couldn't tolerate the 25mg dose mainly because of the horrendous aches and muscle cramps. (It also made me extremely breathless and caused cardiac arrhythmia.) Once the dosage was lowered to 15mg my symptoms improved dramatically. It may be worth discussing taking a lower dose when you next see your consultant.
Good luck.
Jen.
Hi Angelina! What a rotten time your are both having. From my own experiences I would say the drugs are to blame for the nightmares. I had horrible nightmares when I was first diagnosed and taking a cocktail of drugs. They were so bad that I was afraid to go to sleep, in fact. They stopped as soon as I managed to get off all the painkillers etc.
I have never found that doctors are particulary good with drugs. They tend to over-prescribe and don't understand that certain combinations create various unpleasant side-effects. My advice, for what it's worth, is to have a word with the hospital pharmacist. He or she is the expert and I've found them only too ready to help.
Hope life settles down soon for you both,
Jen.
