[tonyfParticipant]

Hiya Jan, funny, so many households are similar. We’ve decided that health issues will take priority. At the moment,our number 2 son has recently had a foot operation, so he’s on crutches, his son, age 3 gets every cold imaginable, brother in law has smoldering waldenstroms! daughter is having her first baby early march, but has sticky blood so is injecting herself daily, and me, I’ve just had a few days at the hotel Leicester Royal Infirmary, unknown infection, oh and a second SCT coming up soon.
I don’t know how my wife copes, but she does, usually with a smile.
Im surprised she hasn’t hit the wine bottle yet!
Keep smiling through.
Tony F

[tonyfParticipant]

Jules, you seem to be going through a lot of emotions at the moment, no one in our situation should have to do that!
Why not contact Macmillan, they are very sympathetic and very capable of giving good sound advice, particularly how to access financial support and carer support.In the past we have found them to be very helpful.
Wish you all the best.
Tony F

[tonyfParticipant]

Evening Mojo, I was 68 when I had my SCT. I live in Leicestershire and attend the Royal Infirmary. I was in hospital for three weeks during the SCT, Returning home was very strange and unnerving, guess I was institutionalised! My wife is my carer, and although I am very active and do as much as I can for myself I did find that I was reliant upon my wife. I could shower and wash etc but was pretty helpless at everything else. I didn’t g out for ages and visitors were not really encouraged. Appetite was non existent, but did drink lots!
The consultant did not want to see me for 100 days, unless there was a problem. I guess it was 6/8 weeks before I ventured out and started walking the dog and getting my life back, once I overcame the initial shock there was no stopping me. In the early days I did sleep a lot during the day.
Not sure what to suggest to you, I guess it’s a question of wait and see how your husband is managing.
Hope it goes well for you both.
Regards
Tony F

[tonyfParticipant]

Welcome back Andy, you’ve certainly been through the mill, did not realise how seriously ill you really were.
Hope you continue to improve, take it one day at a time, you will get there.
Thinking of you, best of luck.
Tony F

[tonyfParticipant]

Hi Simon, yes, I found that I had dry skin on face around ears etc tried all sorts creams, but Boots no7 for men worked really well. A good hand cream for hands and forearms and a good body lotion for elsewhere!
Hope this helps.
Tony F

[tonyfParticipant]

Hiya Peter, I tend to agree with Annette, listen to the haematologist. I was diagnosed at 67, had a stem cell transplant at 68. Had 26 months completely free of drugs, travelled to USA, Hawaii, Spain, Greece and over the UK. Lived life as one should! my pp’s were at 9 when I relapsed. My age now 71. I have just started on velcade, dexamethasone and thalidomide plus an assortment of additional drugs to counter infections and other problems that may occur. Pp,s have dropped to 4.5. The intention is to get the pp,s down to zero then onto a second stem cell transplant using my cells taken and stored from the first SCT.
My consultant says that the second SCT may or may not give such a long remission, they don’t know, as everyone’s reaction differs. If I relapse again there are further treatments available with more coming, my consultant reckons that she will still be seeing me when I hit 85 years age ( she’s obviously younger than me)
I’m sure your kidney consultant was trying to be helpful but I would talk to haematology. Does your hospital have a myeloma specialist nurse, a long talk with her/him would help. Also talk to the myeloma UK nurse over the phone and get as much literature from them as possible. Don’t know where you live but you will find a myeloma support group close by.
Best of luck with your journey.
Regards
Tony F

[tonyfParticipant]

Vicky, so sorry to hear your sad news, our thoughts are with you and your family at this time.
Tony F

[tonyfParticipant]

Hi lej13, sorry to read that your dad is having problems with his treatment. I am on velcade, dexamethasone and thalidomide, I wonder if the pins and needles could be neuropathy, in which case you do need to talk to the consultant and have the dosage changed or the drugs changed for something which dad finds more acceptable. First thing Monday I would phone the myeloma nurse and talk it through with them.
Hope you can sort the problems out quickly and that your dad can get back to managing his life.
Hope the above helps
Regards
Tony F

[tonyfParticipant]

Hi, yes seems a permanent problem. Not really a hoarse voice more strained, still odd.
Had an appointment with consultant today, she feels that the voice problem is the Dex! discussed feeling wiped out, not the drugs, seems that I have an infection, so have 5 days of antibiotics.
Regards
Tony F

[tonyfParticipant]

I’m on velcade, dex and thalidomide, two weeks on, one week off, and I have the same voice probs. This is my week off drugs and I am absolutely wiped out.
Reckon dex has a lot to answer for!
Regards
Tony F

[tonyfParticipant]

I think that you should be receiving a copy of the consultants letter as a matter of course. Mine normally take about 12/14 days after appointment to arrive, always have done.
Don’t be paranoid, you’ve got enough to worry about!
Hope you can sort it out.
Regards
Tony F

[tonyfParticipant]

Hey, congratulations you two. What took you so long Colin?
Best of luck.

[tonyfParticipant]

Hiya Vinni, looks like you had a great birthday bash, your mates look as though they enjoyed themselves as well. Hope the weekend took your mind off things!
Well done on raising £400 that’s really good, you’ve got some very generous family and mates.
See you soon
Tony F

[tonyfParticipant]

Hi Brian, following my SCT I was on antibiotics for three months. Then I was stopped. I opted not to go on maintenance drugs and was completely free of drugs for about 26/27 months.
just to cheer you up a bit has your consultant told you that after SCT you will have to have your baby injections again! I never thought about that but the chemo prior to SCT wipes out all immunity.
Wishing you best of luck, hope all goes well.
Regards
Tony F

[tonyfParticipant]

Vicki, I am so so sorry to read your post, as Helen said I think that we all dread hearing what you have both been told. I truly hope that you can get Colin home to familiar surroundings. My thoughts and prayers to you both.
Regards
Tony F

[Author]

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