Just been diagnosed with Multiple Myeloma.

Hi Paul,

Welcome, I can understand why you are not happy, however please take some reassurance from the fact that there are much worse cancers out there and that unless you have a particularly high risk, poor prognosis version of Myeloma (which I’d be happy to explain another time), then while it is not currently curable it is eminently treatable.  So it is certainly possible to live a relatively long and relatively normal life with only occasional short periods of chemo followed by long periods of drug free remission, especially if you have been diagnosed early and don’t already have too many symptoms such as organ and bone problems.

With regard to the chemo side effects, it very much depends on the drugs involved so it would be helpful to know what treatment they are offering you on the 14^th Jan.   Things change over time but I believe that the current normal NICE approval for first line treatment is still VTD i.e. (V)elcade aka Bortezomib, (T)halidomide and (D)examethasone.   Can you confirm if this is what you are getting?

This is what I'm going to start on VTD Bortezomib (Velcade), Thalidomide and Zoledronic Acid all starting next week lets hope all the side affects are kind to me. Also I'm will be on dexamethasone.

I am pleased to be able to tell you that although these are serious and nasty medications, the traditional picture of spending endless hours in a dingy hospital corridor on a drip being sick does not apply and your hair will not fall out.

These drugs are actually well tolerated and easily administered. Velcade is a subcutaneous injection (into your lower belly in the area around your navel) and although it might take a couple of hours to be prepared by the hospital pharmacy it is administered fairly painlessly in about 10 to 20 seconds.  Thalidomide and Dexamethasone are in the form of pills that are mostly taken at home.

As for side effects, my experience was not bad at all so I hope you find the same:

Dexamethasone is a steroid and tends to make me a bit hyper for a day or so and I find that it does make it a bit difficult to sleep the day you have it but you get used to it.  On the other hand it can be quite enjoyable as it gives me a bit of a lift. 

Thalidomide had no real side effects for me.  It was initially blamed for making me a bit moody and ‘road ragey’ but on reflection I believe that any mood changes were down to the shock of being diagnosed with cancer and the stress of trying to live a normal life and continue to work around the treatments.

Velcade had no immediate side effects for me, however some patients including myself have suffered with gradually occurring Peripheral Neuropathy (nerve damage usually causing some tingling or pain in your feet and hands) which is blamed on Velcade.   This is manageable with painkillers and should be minor and not permanent if you only have a handful of cycles of it.   

Zoledronic acid is a bone strengthener which counters the bone deterioration effects of Myeloma.   It’s an intravenous infusion (a drip) but is quite painless.  It only takes about 20 minutes and is administered maybe once a month.   I’ve never had any side effects from this.

So overall, nothing really terrible there, be prepared to feel a bit under the weather for various minor things and expect your bowels to go a bit haywire but otherwise if all goes well you shouldn’t feel much different to normal.

I hope that helps, it’s all a bit of a shock at first but hopefully you will have the same sort of experience as me and not find any of these drugs too difficult. 

Good luck and do let us know how you get on and feel free to ask if you need any other information.

Regards

Jon

I too have just been diagnosed, with asymptomatic myloma, will be on steroids and chemo tablets, plus blood thinning injections. Start on 29th Jan.

Thanks ever so much Jon I appreciate you taking the time to give me the run down, I will let you know how I get on. But to rub salt into the wound my feet and ankles  have swollen up on antibiotics and I also have a hiatus hernia so not much wrong with me anyway thanks again.

Paul

Hi Paul my wife was diagnosed in mid to late Oct 2020. All because she thought she had pulled a muscle!! During the 3wks it got to get a diagnosis the rear of her torso moved unbearably in a few short weeks so you can imagine the pain. Luckily Macmillan came on board and arranged a bone marrow test. Course then it takes what seemed like weeks where we were on our own worried sick. Then Macmillan invited us in and on the temperature test as the door I was diagnosed with COVID! 
The first Dr said it’s a couple of tablets and an injection in your tummy so I imagined this was done on daycare.

wrong! We were given 20tabs and a box of needles and sent away. Course due to me having COVID no visitors of any kind by lots of Morphine to administer. 
in those dark days I believed that my role was to indirectly poison my wife to death....

Right,move on 2 1/2 months Macmillan are fabulous for us. We have been given lots of financial help and advice.

Course the downside for my wife was sickness,lots. Before during and after taking the drugs and food or in our case ensure drinks. 
but the results are coming bk and look good and morphine had been reduced and her sickness had stopped!! Now eating and although she has lost a lot of weight we hope we are now fighting back.

feel free to ask anything at all...

Greg is my guru on here and picked us up when we were so low.

john

Just wanted to say thanks very much John for your very kind words. I really hope everything is going as well as can be expected for you and Anita. 

Greg

Hi Greg and to others who are viewing, Since we are have the sickness stopped and Anita has now lost her aversion to tablets,(a difficult one when it’s steroids days with 40 to take)! So can’t say we are in a happy place but definitely better. 
because her last 2 bloods and cancer markers were doing well Anita has a bone marrow removal this Monday so that’ll include the worry to hear how that goes.

I know the difference these messages make. I love hearing how others are doing and it’s hard to see what a difference it makes to us.

so we are in a bit snowy Lancashire by the sea....I used to say they’ll carry us out in a bucket when we leave here not knowing what it might have meant to Anita with the bone messing but we laugh about it.

cheers Greg

and love to you all.