Hi David
Revlamid and Velcade are manufactured by two different pharmaceutical companies
Revlamid is like thalidomide you take it in tablet form. for 21 days then a week off. Velcade you get in an injection at hospital twice a week for 3 weeks then a week off.
Not everyone is able to tolerate one or the other, but velcade means your are 'tied' to the hospital and cannot make any plans as it intrudes on your life so much there is a commitment to spending at least a half day twice a week on a day ward waiting for blood test s and the jab to be prepared by the pharmacy for you. It quite tying and each have there own side effects. Both incidentally are accompanied by the lovely Dex!
Its Revlamid that becomes a maintenance therapy and you stay on it for whatever length of time it works for you. One man on here has been using it for over three years.
Love Min
Hi NIgel,
I understand that the funding for velcade is quite complex and if like my husband you do not respond to the velcade then the manufacturers pay for it not the NHS.
I believe that this was the reason he had to have his 4th cycle even though prior to the fourth cycle he was not responding. So essentially by completing the 4th cycle the NHS gets to claim the entire cost back from the pharmaceutical company because it was not effective.
I believe for those people who do respond after they do respond well following the 4th cycle the company provides the rest of the cycles for free. Or something like that! I only know that myeloma Uk helped to get the deal going to ensure that patients in the uk got access to front line drugs
If I got this wrong it was as I remember it at an Info day earlier this month in Newcastle. The main speaker there was Professor Jackson who you will see a lot of on this site in video format. Well worth a watch, very up to date
Min
Jean
I strongly suggest you contact the help line and get a take two pack. It is for you to give to your GP in order that they can better understand MM it is produced by Myeloma UK and if it does nothing else it will help another poor should who might not get diagnosed until much later because GPs rarely see a case of mm therefore cannot diagnose it.
Hope the G&T calmed you down
luvMIn
Poor Nigel
I think you just have to give in to the lethargy and fatigue until you hit a day when its not there. No good fighting against it and no good worrying as that does not help.
Give yourself the time to heal and it will pay dividends. Like the new photo by the way.
Min
Dai
Im so sorry to hear your news. I /we know all too well how bad you feel. Peter only got 5 months of remission which is nothing and classed officially as a failure of SCT. Following which he had 4 cycles of velcade which induced DVTs in him, accompanied by pulmonary embolisms so beware of breathlessness on velcade to make matters worse it stopped working after the 3rd cycle
Peter was at over 2000 before he started velcade and was feeling and looking absolutely better than ever! It was a real let down to go onto medication again and see him laid so low with it.
He also has bence jones (light chains) and following velcade went up to over 8thousand. believe it or not he still felt well, compared to now!
He was told there is likely no chance of a second sct as less than a year is classed as a failure even though he has the lovely harvest waiting to be used. It was suggested that a sibling donor might be more successful but more dangerous too.
Right now we are waiting to find out how the 3rd cycle of Revlamid pans out before making any plans. Once again Im sorry your finding yourself feeling gutted, but once the decision to start medication starts you will put it all behind you
Best wishes Min
Dear Jean,
I think you have to play the little woman and ask him to do it for you! Even if its just to make an appointment for when your return, then you wont need worry the whole time;
Peters persistant pain in his side was his myeloma returning and we ignored just like Frank. Its a shame they don't flag up pains in a side as a mm warning that something is not right.
What about getting [b]him[/b] to ring Ellen on the helpline?
That way its someone who is totally switched on about MM but not involved with his care. She can give him advise that he can ignore if he choses or she may be able to sway him to seek help.
I would say if I had a holiday booked I would go off on it, as it may be some time before you get another one, and a week wont really make much difference to the outcome.
Peter used to say I know my own body and I know I don't have cancer.. he said it even up to his diagnosis. He was in denial until his transplant failed, constantly believing the Dr had got it all wrong.
Men,…………… cant live with them; cant live without them!!!!!!!
It will come right eventually Jean, hope its nothing more than a scare.
Take Care
Min
I wouldn't worry Gaye,
My sons next door neighbour is a Dr, and she like everyone else these days is just a person with extra special skills that she has worked hard to get.
She thinks my son is special because he is a captain on a MN ship. He can do things she cant and vice versa in there own field.
When it comes down to it we are all just people with our own specialities and some are very clever and some not so.
Im off outdoors to play in the garden in the sun whilst its shining have a nice day
Love
Min8-)
Hi Jen,
Peter has just started the 3rd cycle of Revlamid and mornings are 'achey' still but I think once the dex has stopped he will pick up again. The dreaded dex brings its own very unique side effects which seem to amplify everything.
I know now that once the effects of dex wear off he copes better with the Revlamid, his dose had been reduced and is back up to 25mg and must admit today he looks grey so hope the next few days are better.
I think that bone pane is worse when the drugs are hitting home and doing the thing there meant to. How annoying to have to feel so awful in the hope of feeling well.
Wouldn't it be good if you had a see thru bit and could see that the drugs are working then at least you would know it was worth all the discomfort.
Hope your over the worst of the initiation of Revlamid soon.
Min
Hi Edo,
I would not be too concerned about the free light chains. I read your posts again, did he have just once cycle of Revlimid before going off on holiday with no further Revlamid until his return? Is this why he had the velcade added to the Revlamid? My husbands light chains were at over 8thousand when it was decided to put him on Revlamid, By the time he actualy got it, two weeks later the Doc reckoned that they were likely to have been at 10thousand when he started. Yet he looked well!
I think once they get him turned around from his depression he will pick up again. some people chose to bury there head in the sand and only when they hit a big blip does it sink in that they are not as infallible as they thought they were. Almost like 'I will show them they are wrong with there diagnosis! ' It is possibly sinking in now that the Dr's were right. The hospital can provide complan, and other powdered and liquid varieties of proteins; Its probable that the nursing staff don't have time to oversee him 'eating ' his meals and its well documented that older people suffer badly from poor nutrition whilst in hospital.
Bring this up with his Dr and ask them to ensure he is eating properly and being helped if necessary.
I used to and still do worry about the numbers of free light chains but lots of people can live in synergy with high numbers which sound massive. My husband was at 5k when diagnosed and I thought 8k would kill him; but he looked and felt well? The velcade made him look and feel ill!
Yes Keith we got good news today, HGB13.3 wbc 4014 plts171 neut still low at 1.67 but double last months. More important a 75% reduction on light chain numbers. Anyone know what MONO is? or does it matter?
I hope your lower dose helps you to cope with the damn treatment, Peters lower dose of Revlamid last time has been beneficial as he is more like himself again. Cantankerous argumentative and not sleeping about 15hrs in 24
Waited so long for good news its like winning the pools!
He had spasms like yours and got some quinine of Dr which got him over it.
Min
Had a clinic today 1st one in 4 weeks so finally got the results of the four weeks after 1st packet..
Peters light chains had dropped almost 75% in the 1st month. They are now down to 1918.from over 8000. the neutrophils are still low, but his dosage has gone back up to 25mg after the last lot going down to 15mg.
The bad side effects of sickness and diarrhoea leg pains and cramps have now calmed down, generally he is looking well, rather than the grey colour he was at this stage on Velcade. We have to ring up on Friday for more up to date light chain results following which we had the OK to go on holiday and the Dr is going to give him some kind of human anti bodies before we go to keep him well.
Bridget, the week off meds made him achy and sniffy, unable to sleep without the Revlimid to help, but otherwise a big improvement, and looking better going forward. Don't want to count chickens before they hatch but, I am quietly confident now.
Luv MIn
Im sorry your having a tough time Keith, that velcade is just so toxic. Get yourself some good wholesome foods and fruits to counteract the toxicity and drink drink drink drink. to washout the chemo.
Swollen baggy eyes was the first sign of Peters MM which attacked his kidneys 1st
My hubby likes water but just gets sick of it, so I get him fizzy water in bottles, flavoured water in bottles cans of 7up. One of those water filter jugs, soda water, and finally tonic water. In fact he is awash with water, and hasn't had a drink(alcohol) for ages and ages, soda water is good for kidneys but don't overdo it.
Hot flushes well,l we women of a certain age know all about them LOL but they help to keep the heating bills down HE hee. Seriously though, I hope you pick up soon and that the reduced dosage makes life with velcade more bearable, cool showers will help and looser clothing; more importantly are the numbers going your way on it?
Keep your chin up mate
MIn
HI and welcome too,
I think the longer your Mum can put off treatment the better for her, the medication for this condition can be quite toxic and the side effects are not always good. But everyone is different
If your mum is fit and well, and enjoying life then putting off medication is the best thing.
Because once she is on the treadmill of treatment for her condition it cannot be predicted how she will respond to it; she may find that getting herself fit and strong enough to cope with what can be a strenuous course of treatment, will make her better able to cope with it when it does start.
A large percentage of MM sufferers do not get diagnosed soon and are usually run down by the time treatment is started. I hope it is a very long time for her before she has to commence any kind of treatment so she can enjoy her life without the constraints of catching infections whilst on medication.
Good Luck to you all
Min
Happy Hic
Hi Gill
One of my girls I was trying to call her by her sex….. Bit*h and it was deemed inappropriate language!lol was a devil to house train and I do sympathise, now the weather is getting better at least you will be able to leave the door open for her!
MIn
