Hi Dai,
I went on the 5th of March to Newcastle one, and had been invited to give a talk from a carers perspective( I hate the term carer I call myself a worrier cos I worry about him) To the 80 guests who attended. I was terrified!
It was an excellent day and well worth attending. The morning is given over to talks by health professionals,…[Read more]

Poor Lamb,
That means your left to do the house training for the poo pee.
I hope you can get him something to help him feel well soon. These toxic drugs are archaic, if only they could find something kinder to treat the dreaded beast, not Steven Gill, but MM.
Sadly because it is doing combat with a belligerent host it needs to come out…[Read more]

Now Gill
You have me thinking that I might have to try that, being newly retired. Hee Hee
MIn

Hi Shirls
Really pleased its all going so well. so I imagine you will be having an additional Birthday now, for the new you! You deserve some fun now but stay out of the big market when you come to Newcastle.
All the best for the new phase of your life and long may it last
luvmin

Ann Its possible that they will also give him GCSF injections rather than an transplant as they will force his body to produce extra new immature cells to replace the ones killed with the melphalan. The body makes its own but help is useful.
min

Hi Nigel,
When Peter was on velcade, his bloods were done in house so to speakThe machine and equipment were in the day ward. (State of the art new hospital) and depending on the results depended on what dose if any he got on any given day. He had days when he got half a dose and other days when his platelets were too low for any velcade at all.…[Read more]

Hi Tracey.
Im the one who's husband had/has the nephrotic syndrome before diagnosis with MM. I was concerned to read of fluid restrictions in your post, as Peter has had to drink more than the average in order to get the light chains out of the kidneys. Its the light chains that alters the glomular filtration rate and stops them working making…[Read more]

A young lady to be very proud of Gill.
I think she deserves a very special hug from her Pop
LuvMIn

Jean have a wonderful time on your holiday, don't worry…… if Frank is not exhausted he must be reasonably well.
Peter used to use diazepam for muscular pain too so hope it makes him comfortable enough to enjoy his holidays. He sounds like a very determined chap and as long as he feels well, don't panic. Enjoy and come back and tell us how…[Read more]

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]