[tonyfParticipant]

Hi Chrissie, funny how you get conflicting advice from all sorts of areas, I was told definitely not to drink green tea! So who is right? Wish I knew.
Still life goes on!
Regards
Tony F

[tonyfParticipant]

Nothing more to say Don, I wish you all the best for the future.
Regards
Tony F

[tonyfParticipant]

Evening Wendy, I was 67 when I was diagnosed with light chain myeloma, returned from a holiday in the Far East with a chest infection which my doc diagnosed as pneumonia. That was cleared and had several more infections, loads blood tests and three months later was diagnosed with myeloma. No bone pain, kidney function ok. Was/ am on the myeloma XI drug trial. Had a stem cell transplant and am now not on any drugs. As I am on the drugs trial still I attend clinic every three months. I am just coming up to my 70th birthday and although my pp levels did not disappear completely I feel great, get away on holidays, including long haul! Do admit to feeling tired occasionally and can fall asleep at the drop of a hat, but hey that’s perhaps age!
Whatever the future brings for you, and whatever treatment is given it is all doable.
I’m sure that you were advised not to get onto the internet, I would stay with this site, any questions, worries and anxieties can be answered from here.
Best of luck for the future.
Regards
Tony F

[tonyfParticipant]

All the best with your MRI scans, I fell asleep while I was having mine! Haha
Regards
Tony F

[tonyfParticipant]

Good evening, so sorry that you have to be part of this group.
You have every right to be concerned, this disease is a bugger and effects us all differently. I hope that the following will give you and your dad some encouragement,I am 70 in August, was diagnosed with myeloma in early 2012. Was put onto the myeloma XI drugs trial, that lasted for 5/6 months, in early 2013 I had a stem cell transplant. The summer of that year we went on holiday to Spain, have had more than a few UK holidays and have been to San Fransisco and Hawaii. So don’t think that life comes to a jarring halt, it doesnt!
The various treatments can be harsh and some of the after effects are difficult but believe me they are doable. I am sure that others on this site will tell you their own stories but be assured we are on your side and all of us will give advice and encouragement.
Many of us tend to disregard many of the other sites, much of their info is outdated and rather scary.
Wish your dad all the best, tell him to remain strong, and I bet that in the nearness of time you will be taking him to his favourite place in the world.
Regards
Tony F

[tonyfParticipant]

Hi Karen, sorry for interrupting your conversations. Almost from the start of my treatment, 2 plus years ago, I have been having my bloods taken by the nurse at my doctors surgery, about 2 weeks before my clinic appointment.
As I am on the myeloma XI trial I have bloods taken at the clinic before seeing the consultant.
Don’t you just love feeling like a pin cushion!
Odd how treatments vary from area to area.
Regards
Tony F

[tonyfParticipant]

Sorry that you have to be welcomed to this site. I was / am on the myeloma XI trials. I was diagnosed in 2012. Had 5 months of drugs, had a couple of infections with hospital stays. Had the stem cell transplant in early February 2013. Opted for no maintenance drugs, remain on the trial and have a check up every three months. Para protein are at 2.6. Feel very good, get tired occasionally, but have been on holidays at home and abroad and long haul to USA, live life as much as possible and do as much as my body allows me to do. It’s my 70th birthday in August, looking forward to many more years!
It is a scary journey, there will be pit falls along the way, but you can both do it.
The folk on this site are great and can encourage and advise on any variation of this disease and it’s treatment.
Best of luck to you both.
Regards
Tony F

[tonyfParticipant]

Hi, in answer to your query ref SCT? My pp level prior to SCT was 44, after SCT it was at 1.9. Stayed that way and has slowly gone up to 2.9. I am not on any medication, and have had one bout of infection since SCT. I am 70 in August, had SCT 18 months ago, feel and look good. Went to USA and Hawaii recently, had several UK holidays! get a bit tired occasionally! but am ok. I visit specialist every 3 months, next appointment August. So wait and see what’s going on!
I can’t answer re mephalan, never had that!
If I had to make the decision to have SCT now I would say yes Nd go for it.
All the best.
Tony F

[tonyfParticipant]

Hi Susie, I can see why you are concerned. I am no expert but I would have thought that a pp level of 36 would trigger some form of treatment. I was diagnosed with myeloma with a pp reading of 44, my chemo treatment started, followed by a stem cell transplant. My last pp reading 15 months after stem cell transplant was 2.2 having risen from 1.9. At present I am not taking any medication and see a specialist every 3 months. I am worried about the small rise in my pp’s, my consultant is not at all concerned, same as yours. So maybe the answer is not to worry, same goes for you, if all of your other readings are ok go for the check ups and rely on the consultant.
Best of luck
Tony F

[tonyfParticipant]

Evening Izzie, it takes me a while to get going in the morning, I usually have to stretch etc it is a bit of an effort getting downstairs. Usually sit for a while, have several large cups tea, sometimes take two paracetamol, but then take the dog out for an hour or two across country!
Since diagnosis just over two years ago I have been on penidronate infusion, once a month and daily adcal tablets. I think that at my next clinic appointment I will be taken off the penidronate.
Tregards
Tony F

[tonyfParticipant]

Evening, I too came out in a severe rash with allupurinol, I was taken off it immediately and not given a substitute, mind you I didn’t have any kidney problems. However thinking back at each check up they did look at kidney function, so presumably if there was a problem I would have been given an alternative.
Regards
Tony F

[tonyfParticipant]

Well done Ellen, congratulations to you and the whole team, really well deserved.
Regards
Tony F

[tonyfParticipant]

Hi, don’t wish to insult anyone but would hazard a guess the gentleman was late 60’s early 70. The young lady would be mid 70,s, hope I am not insulting anyone. Both spoke about the airbase and how it was guarded by armed guards! The gent talked about the pet food factory. I also noted that Radon is present in the ground around Melton, but then Radon seems to be in many parts of the UK.
I wonder if the university would think about following this up! I will talk to different people at my next clinic visit.
Hope everyone is doing ok, and enjoying this fine weather spell.
Regards
Tony F

[tonyfParticipant]

Just read the BBC pages, I think ibrutinib is a drug designed to fight leukaemia evidently will be in use in Wales by end of the year. Don’t know what the implications are for myeloma.
Regards
Tony F

[tonyfParticipant]

Just to add to this thread, I attended a day clinic today for a penidronate infusion at the Leicester Royal Infirmary. As one does I got talking to other patients, there were two folk who have lived all of their lives in Melton Mowbray and both have myeloma. Neither have spoken to anyone and were unaware of the high myeloma incidence in Melton.
Regards
Tony F

[Author]

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