[tonyfParticipant]

Best of luck with your stem cell transplant, had mine in early February, this year, feel great now! Best of luck.
Regards Tony F

[tonyfParticipant]

May just bump into you on the 6th June, my appointment is 11.15, same day.
I agree with you about the day clinic seems to be chaos at times, but he staff are great, first name terms these days!
Regards Tony F

[tonyfParticipant]

I must have moved into your room as you moved out, can't remember the 'cell' number but I had white cups!
My next clinic is June 6th at 11.45 then upstairs for my monthly penidronate infusion.
Might just see you there.
You are right about Dave, very good and very thorough.
Regards Tony F

[tonyfParticipant]

Nice to meet you, you seem to have gone through the mill. What dates in January 2013 were you having your SCT? The reason I ask…..I was in the same transplant unit as you from January 29th, we could have been neighbours! We live in Leicestershire and I attend the various clinics at the Royal. I was diagnosed in March 2012, went onto the Myeloma XI trial. All drug treatment stopped in October, aborted attempt to harvest stem cells in early December, due to an infection. Successfull harvest in January, transplant early February. Last visit to clinic and I am in partial remission, not taking any maintenance drugs at the moment, waiting to see what happens at next visit to clinic. I assume that you know Dave and Cass the trials nurses and Jenny Rodgers, along with Drs Chapman and Barton.
May see you there sometime. Those who contribute on this site are very friendly and knowledgeable, most questions get a god response.
Regards Tony F

[tonyfParticipant]

Sorry that you are here, but welcome to the site. Myeloma seems to affect everyone differently and everyone has a different tale to tell. But whatever the problem or question I am sure that you will find someone to answer it here.
Regards Tony F

[tonyfParticipant]

I am so sorry to hear your sad news Hawkeye, love to you and your family at this sad time.
Tony F

[tonyfParticipant]

I am 68 years age, diagnosed in march 2012 , immediately went onto myeloma XI trial, had my SCT this February, had my three month appointment last Thursday. All the blood counts were good, my para protein read 2.2, so am considered to be in partial remission. At the clinic I had a long conversation with the trials nurse about revlimid and veronistat, he was not keen on me going onto the maintenance drugs, reading what you have discovered I now understand why he was not keen. So at the moment I am not taking any maintenance drugs at all.
During my discussion he hinted that some patients who are on the maintenance drugs seem more prone to infections and therefor hospital stays as well as fatigue and tummy troubles.
Hope I have made the right decision and I hope your mum makes the right decision to suit her.
Regards
Tony F

[tonyfParticipant]

So sorry to read about your mum, strange how mm treats everyone differently. I am also being treated at the Leicester Royal Infirmary, I have found them to be very thorough and caring. I am sure that they will do their level best for your mum.
Hope it goes well for her tomorrow.
Regards Tony F

[tonyfParticipant]

Good luck with your SCT, the worst part about the harvest is having to lay still for 5 hours! As for the rest of the journey I am sure that you will take it in your stride, all of us react in a different way to the treatment, but you know the unpleasantness only lasts for a short while and hopefully the outcome is worth while and it leads to a long remission. Good luck keep us posted with your progress.
Regards Tony F

[tonyfParticipant]

Hi, it was 3 months ago that I had the stem cell transplant, my 3 month check up is on 9th May, so should know more then. Fingers crossed!
Good luck with yours, hope its as trouble free as mine was, I'll be thinking of you both, stay calm.
Regards. Tony F

[tonyfParticipant]

Hi, we have a very lively border collie, I think that it is the dog that has kept me going through the whole process. As Tom said don't get overwhelmed by cleaning everything, just be sensible, I carry on just as I used to with dog, just wash my hands after stroking him, like me he's very confused by everything. I've gone back to walking him everyday across our local fields,good for me and he loves it!
Still sleeping in separate rooms simply because I get quite restless, sleep well but move about a lot.
Try not to stress too much, I'm sure it will all be fine.
Regards Tony F

[tonyfParticipant]

Evening Stanstan, next appointment with the haematology specialist is on 9th May. Not sure what they will tell me, I wonder if its too soon after the stem cell transplant, that was done on 2nd February. It is good not being on any medication!
Regards Tony F

[tonyfParticipant]

Good luck with the SCT, had mine at the beginning of February, was in hospital for about 3weeks. Had a rough time for a week, but after that wanted to get out of isolation.Very strange getting home, my wife made sure that all surfaces were cleaned, separate towels, separate bedroom etc very little contact with people for a few weeks. Appetite was very good, ate just about anything going, carried on drinking as much as i could. After a month started driving and walking the dog out in the countryside around where we live. Still get tired occasionally, had one appointment at the clinic but its too soon to know if all was a success, not on any medication at the moment, guess that it will take a while yet. Why is there such a long wait?
Regards and good luck with the SCT.
Tony F

[tonyfParticipant]

Hi Jackie. Thanks for your reply. Yes I am attending the Leicester Royal Infirmary, currently under the Bone Marrow Unit but expect to be referred back to the haematology unit very soon. The group meets at Helen Webb House. Have you been there, they offer al sorts of services for both the patient and the carer. And yes one of the nurses is Jenny Rogers. Though my contacts have been two male nurses, Dave & Cass, they have been controlling the Myeloma X1 drugs trial that I have been on, but I do know Jenny. Small world eh! Really hope that your mums treatment can restart sooner rather than later. I'm sure that our paths will cross at sometime. Stay strong for your mums sake, hope it all goes well. Tony

[tonyfParticipant]

Hello Jackie, so sorry to read about your mum. I was diagnosed about a year ago with myeloma, I went through a drugs trial and over the past month have just completed a stem cell transplant. It will be about 3 months before we know if the stem cell transplant has been successful or not, so fingers crossed. I can only tell you of my experience, Like your mum i have remained positive throughout the whole time, I have had great support from my wife and family and have nothing but praise for the NHS, from the nursing staff, the specialists, the doctors, support people. You say your mum is strong and is going to fight it all the way, good for her, may she do it with a smile on her face, and with no complaints. Some of the treatments are really quite unpleasant but you know the side effects only last for a short while, and hopefully the benefits out way the hardships. Here in Leicestershire we have a cancer support group, who offer help and advice for both patients,family and care. I am sure there will be the same type of group in your area, give them a try! I also found Myeloma UK useful, they can answer a lot of the questions that will no doubt come to mind. Go along to one of their info days, I found the local day really useful. I hope your mum keeps her inner strength, tell her to keep smiling, it will help you both. Hope the treatment goes well.
Regards Tony Farquharson

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