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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

I had six courses of Velcade, Dai, and they lasted me 14 months before I had to start the latest round of treatment. I was very reluctant to go on Revlimid and asked to have Velcade again on the principle of "better-the-devil-you-know". However, after a horrible first month this has been so much easier, ie. no twice weekly trips to the hospital…[Read more]

Dai, the very first report I read about Velcade being administered subcu was headed "Not to be released to the British Press". (I'm not sure if it was on the link I sent you some while back.) That says it all, doesn't it?
However, it's really worrying when specialists haven't even heard about the latest research. Surely if we can find out what's…[Read more]

Hi Dai,
I mentioned the use of velcade subcutaneously a couple of months ago. There was a report of a paper given at the ASH conference stating that it was almost as effective used subcu as it is when given intravenously, and that the side effects were greatly reduced. I do have a link to the article but each time I try to add it to a post on…[Read more]

Hi Bridget,
Just wanted to know if you are still feeling better than you were. I am about a month behind you in terms of treatment (on second week of second mth of Revlimid +Dex)so it is interesting to compare how it has been affecting us.

I feel tons better since the dosage was dropped to 15mg and even think I have cracked – well, partially!…[Read more]

Debs, I had 6 courses of Velcade. I couldn't have the very final dose as the soles of my feet went numb so they decided not to give it to me. My feet did recover, well, back to what they were before, anyway, so it wasn't a problem. And I felt great after all the gunk had got out of my system!

With you having such young children then obviously…[Read more]

Hi Bridget. It's good to hear that you are feeling better too. I had my first "normal" sort of a day yesterday since I started the Revlimid – dog-walking, working, then gardening – and it was so great to be able to get on with life. Although I am still a bit achy the pain has dropped back to its more usual level and is bearable. Onwards and…[Read more]

Hi Debs,
I just wanted to say that I found Velcade very effective. It batted down my pps from 46 to 3 – way lower than CDT ever got them. I also tolerated it well and was able to live a "normal" life if you factor in the twice weekly visits to the hospital.

Of course there were a few glitches but nothing major and they were sorted out without…[Read more]