That is good news Andy. I have always marveled at your pp readings balanced against the things you do. 11.25 is not too bad and for you it is a bl888y miracle. I bet you go lower at the next treatment. I think your totally committed, with that touch of devil may care, attitude certainly helps you live with Myeloma.
all the very best – think = LOWER, lower, lower, lower, lower, lower.
“Just make sure you open the parcel.”
kindest regards – vasbyte
David
I think all forums go through phases. The change over of forum format was a little traumatic some people just gave up posting I think. It will come back.
Kindest regards to all – vasbyte
David
I have had the taste problem since 2009. I found I could only really taste strong tasting food. I developed a passion for Peanut butter and raw Spanish onion sandwiches!
I have now moved onto Revlimid and surprisingly went into remission after the 2 cycle, I have now done 9 cycles.
My poison of choice has always been Guinness which I stopped drinking in 2010. Three weeks ago, whilst visiting my daughter my grandson offered me a Guinness and I thought I would give it a go and low and behold I found I could taste it just like the old days. Was I a happy bunny – you bet.
Kindest regards – vasbyte
David
Best of luck for huby’s cement job and SCT.
The SCT can be a bit dauntin but it is well worth the effort in my opinion. I did not get into remission from it, pps only went to 2.9, but they stayed that way for a number of years.
kindest regards – vasbyte
David
Hi Maureen, cannot help you there I did only 3 cycles of Velcade and got pulled off it, I had PN bad.
However the good news is I went onto Revlimid and at my last consultation, Friday last, I was told that “On Paper (i.e. my blood reading) I am perfectly normal now.
Kindest regards – vasbyte
David
Sorry to disagree with you Eve but AA is not a right. You have to establish with the issuing authority that you have a need for it. This is done by filing a very complicated and detailed form. The best people to fill this form out for you is a Macmillan adviser.
Sorry you have had to join us David but take the advice and get in touch with Macmillan. They will sort you out. A word of advice when you fill out the form pick your worst days not your best days, the fact that you feel great the day you do the form is immaterial it is how you might feel later on that counts.
If you have a partner/Mrs and you need help in dressing or things like that you can get Carers Allowance the difference between the two is Careers Allowance (about £20 a week) is TAXABLE, so if your wife works it is not really worth the effort.
Best of luck
Vasbyte
David
Hi Rosie,
I was interested in your comment that “he has been on Revlimid for 2 years now”. My understanding is that the MHS gets Revlimid free after 16 or is it 18 cycles of treatment. Is this the case with Jeff he would have done 24 cycles in 2 years. And, as a matter of interest has he reached Good Remission on it or just a low PP reading?
I am on my 6th cycle as present and have reached good remission.
Kindest regards – Vasbyte
David
Hi Michellew, Slightly confused 2% of all newly diagnosed cases of cancer? Does that mean 98% of all cancers are other cancers? If that is the case then Myeloma is surely a rare cancer, which is what I have always understood. Approximately 4,000 pepole being diagnosed a year is the standard figure I believe.
What about the other long time theory that it is more common in the coloured population, people of African descent, than European white. Why I wonder?
Kindest regards – vasbyte
David
I was going to post ant then I read everybody’s efforts and thought they have covered it all.
However, my penny worth is:
Definitely buy the folding walking stick. Myeloma attacks the bone and failing over and breaking a shoulder bone is really not an option you want to live with.
Definitely drink the water, I was told 3 litres a day, and it does seem a lot, but you quickly get used to it. I buy 6 x 500 ml bottles and then fill them up from the tap. I also add Robinson Barley squash to help. They are left of the side where my wife/carerer can check I am drinking it. I had my check up last Friday and after nearly 5 years with this decease my liver and kidneys are clear, and I have to admit to being a heavy drinker in my time, so that is real good.
Definitely Listen to your body – do not be a hero, it will hurt you if you do. My son and Granddaughter came up to visit me yesterday but I felt tired towards the middle of the afternoon and went for a kip in my chair, if I tire I generally zonk out for an hour. I woke and we all carried on as if I had been there all the time.
Definitely tell everybody and talk openly about it. You are not at fault here. Be honest tell them you have got a cancer which is incurable at the present time, anybody could get it, do not feel guilty and DO NOT look for reasons why you have it. You will not find any answers. Do not blame yourself or your life style.
Definitely do not bother with Web site’s offering all sorts of magic cures for Myeloma on the internet. If eating two slices of cucumber and drinking half a glass of red wine a day could cure myeloma we would not be on Myeloma UK web site would we. There are several good sites such a Macmillan stick to them.
Definitely take the medicine, all of it, you are given, and take it how you are instructed to do so. Avoid taking advice from “quakes” who always know best and always want to give out advice with no real knowledge of what they are talking about.
Definitely Give yourself worth = plan your day. Do not allow yourself to sit in your favorite chair watching telly. I have a written list of jobs or things I am going to do, my wife adds to it if she want something done. I get up in the morning and I do at least one if not more, depending what they are and how strong I am that day. They could be anything; feed the camellias, build a raised flower bed, replace the bike shed roof etc…etc… I feel it adds meaning to my life and I get great pleasure crossing them through.
Definitely do fight becoming dependent. Myeloma affects us all differently so what you can do is down to you. But do not just allow yourself to become dependent fight it. I ask my wife/carer if there is any I can do for her I can make tea or coffee, Hoover the front room, I have just hung some washing out. I make my wife’s sandwiches for work (she only works two days a week).
Definitely plan your life. Do not accept that you are about to die and therefore nothing is worth planning. You have some life left could be as much as 10 years of even more, ensure you enjoy it. I appreciate you must act within your means but “you cannot take it with you”. My wife and I have a trip planned for London on the 19th to 22nd May. We are visiting the National Archives ( I am doing the Family Tree) Tuesday , we then move on to our hotel in London where on Wednesday we are going to go; up the Shard, visit the national Portrait gallery and finally end the day in Soho in a Sing-along Pub (roll out the barrel and all that), Thursday we are around the shops in London etc… finishing the day with dinner with my Sister. I might well be in a wheelchair but it does not matter. We already have on the drawing board another trip to Snowdonia Wales and West Scotland, whether finance or the old body allows it we will see but that does not stop us planning.
Here endeth the lesson!
Kindest regards – vasbyte
David
p.s. For Tom, coffin finished photos will be posted in “off Topic” shortly
Hi Rosie, I have been on this site since 2009 and I have not heard of “myelomatous deposits”. Sorry, I realise that is not much help to you. That just may mean that they, whatever they are, are generally referred to as something else! You do not say whether any treatment was recommended which would give a clue to what myelomatous deposits are.
At a guess I would think they are groups of myeloma cells that the MRI has picked up. My understanding is that a Myeloma sufferer have them all over his/her body and unless they become a nuisance, when they get zapped by RT, they are left alone. Just a guess mind and some knowledgeable person will come along and correct me, I am sure, if I am off the beam.
One word of warning you can still develop myeloma tumors even in remission.
Kindest regards – vasbyte
David
Aha. But I have the answer.
Many years ago, I was being recruited for a job. The recruiting company put me up in a very 10 star swanky cottage hotel, in Wales. This was around 1980 and the wine list started at £60 a bottle! Two guys discussing buying Oil Wells sat discretely over the room from us. We had a wonderful dinner but the wife got hiccups. The wine waiter noticed and came back with wine glass which contained a small amount of light brown liquid. He had a beer mat on top of the glass.
His instructions to my good lady were to lift the beer mat and drink the liquid immediately in one swallow, you must not sniff or in hail just throw the liquid back quick as you could.
It cured the hiccups immediately – the liquid, oho, it was brown vinegar.
Kindest regard – vasbyte
David
Well you guys are really going through the mill – I feel like a fake when I have my few problems. However, I know what you mean about the difference in treatment. Andy’s is excellent through to Slim who is wasting every-bodies time you would think.
Recently I had a pain in the leg my wife dialed 111 and we were asked to go to hospital to see the 111 doctor (they have a separate section), distinctly got the impression they were the second string! The Doctor examined me and took my temperature and declared I had a temperature and she was sending me to MAU (Medical Assessment Unit). Point here is I had just taken my temperature and it was normal (her thermometer was up the creek as was most of the rest of her kit). I think the hospital had given her all the second hand kit!
At MAU I was clearly treated as a time waster and made to wait, I ended up sleeping in the waiting room by putting some chairs together. Eventually, about 2 in the morning, I saw a Doctor and was sent home to await a Scan that day. The scan showed a DVT behind my knee big attitude change from everybody lots of apologies for last night etc..etc…
The irony of all this is if the 111 Doctor’s thermometer had not been faulty I would have been sent home without any treatment!!
Kindest regards – vasbyte
David
Hi Tina, have your friends had Myeloma? Listen to your body Tina it is its opinion that counts.
What does the Consultants say about your Back Pain?
Kindest regards – vasbyte
David
Hi Sindy, Welcome(?) to the Myeloma site.
You will find all the information you could ever want to know about Myeloma here and added into the mix you can talk to other suffers about their experiences so do not be shy if you have a question Ask.
Kindest regards – vasbyte
David
Hi Mich, Welcome (?) to our very exclusive club!
You sound as if you have got off to a flyer with treatment, well done, and a Specialist Consultant to boot. it all augers well for you I think.
I was diagnosed in July 2009 when I broke my neck getting out of bed! Myeloma had eaten my 4th vertebrae, my head is now held up with some great internal scaffolding, if you imagine a church steeple with scaffolding you will get the idea.
My reason for posting is that having been fighting this decease for 5 years and never getting into remission, I started on a drug called Revlimide and low and behold I am now in “good remission” my Consultant’s words not mine. So your journey may get a bit sticky some times but never, never give up!
kindest regards – vasbyte
David