Hi Anne
Sorry to hear your husband is having such a bad time. But I am pleased you found your way to the place where we can offer you support of whatever kind you need. Its a shame that he was not able to respond to anti histamines for the rash, but did he respond well to the Revlamid otherwise? My husband is on his third line treatment too,…[Read more]

Eva
You are sooooo lucky, Peters ambition or bucket list is to visit the 'great wall' I would just like to visit China.
I am so envious and your photos are amazing. We once visited schools in Kenya where the children wrote in the sand and they had no paper or pens until they were proficient at the alphabet, we can count ourselves very lucky in…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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,…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

Oh Dear Gay,
Don't worry the RT will start working soon, Peter's dose took about 6 weeks to be effective.
Now he takes 50mg of tramadol and 20mg of mst when he needs it. This is for new fractures and has to wait for his Kyphoplasty for a while.
But he is able to function and drive and work(albeit for 3hrs a day) though he is unable to at the…[Read more]

Hi Tracy,
Welcome to the MM club, lots of people on here with lots of info or advise if you should need it.
I can well understand your shock, no one is able to receive that kind of diagnosis and not have a million questions. As they have no idea what causes mm you can stop beating yourself up that its something you may have been able to…[Read more]