[HelenParticipant]

Hi Emma
2 things, if mouthwash stings ,and is her tongue very red? with white patches? If so I'd very tactfully suggest your mum has mouth swabs taken, could be thrush, very common on high dose dex, then she needs correct treatment . Soon or she wont feel like drinking if her mouth gets too sore. Try not to get too het up about the ward, it's not haematology so will be alien for the ward staff not knowing the routine with the drugs , or the side effects. Ask to speak to the haematology specialist nurse and get her on side. It's hard to sit on the sidelines when your loved one is suffering. Keep in touch
Love Helen

[HelenParticipant]

Dear Emma
Good to hear your mum is not confined to bed, that wouldn't be easy to endure. I hope you don't have too far to travel to visit her and that the weather stays kind to you. Love Helen

[HelenParticipant]

Hi Wendy
I have my fingers and everything else crossed that all is ok, like you any little pain is a worry, I don't know what is serious any more! Let us know how you get on, hope it is nothing major.
Love Helen

[HelenParticipant]

Dear Dai
I can't really contribute anything to this thread – other than I am reading it with interest. However, as I've not spoken to you for a while I just thought I'd say hello, offer the usual seasonal greetings, hope your treatment plan goes well, is there a tentative start date? …….and send you a photo of my half decorated christmas tree – a virtual Christmas card if you like!
Love Helen

[HelenParticipant]

Dear Emma
It is an anxious time, and yes you do have some of these procedures done, not knowing what the outcome will be. However the risks of not doing anything can sometimes be worse than the treatment. The important thing is to be sure that the choice your mum makes is one that she is comfortable with. I really hope tomorrow goes ok, keep in touch.
Love Helen

[HelenParticipant]

Hello Tom
If you look in the patient services section of the site , in the bottom left corner is a section called clinical trial tracker which will tell you what is available now in the UK in the way of current trials in your geographical area, and Amelie has recently reopened a long discussion in the general section about trials, under the heading Johns second SCT, worth a read I think.
I am now 16 months post SCT and have been on Revlimid 25 mg both as induction treatment and maintenance as part of the Myeloma xi trial. I had a very slow recovery from the graft but am in complete remission, back to work full time and hope to be regaling you all to the point of boredom of my travel plans. It is very important that you find as much information as possible at this stage and that you make the right choices for yourself.
I would enquire about all NHS options before going down any 'private' route as this could be shockingly expensive, and sometimes once you start on the private path getting back into NHS can be a bit fragmentary. One thing I do think about this condition is that you need to be able to fully trust your medical advisors, so ask as many questions, write them down and ask again if necessary so that you fully understand what is going to happen.
Love Helen

[HelenParticipant]

Dear Emma
This really is tough for you all and I hope your mum is able to make the right decision for her, whenever and what ever they decide. I' d get prepared for Monday, pen and paper and every question you can think of written down in advance. You need to know what risks there are involved in each option, no surgery yet might mean higher risk of more blood clots for example, high mm levels in the bone might mean difficult or impossible surgery. I presume your mum is on an orthopaedic ward? Does her haematologist know she is in? Will she need radiotherapy to her hip? And has there been a multidisciplinary meeting about her options? I know these all sound very worrying and I don't want to frighten you but the situation is very complex, I used to work as an orthopaedic ward sister and I'd be wanting as much information as possible. You may not want so much but do have an advance plan that you and your mum can use on Monday.
Love Helen

[HelenParticipant]

Dear Jean
My word that's a bolt from the blue, do they plan to get him in for transplant before Christmas too, or just do the collection? Better book into someone else's house for Christmas lunch I think, it's going to be very busy. Keep us posted on the progress
Love Helen

[HelenParticipant]

Better pack the snow shoes Ted, and the thermals it's nippy up here.
Love Helen

[HelenParticipant]

Hi Ted, happy to help, better get to grips with your high fluid intake now, I'm still finding it a bit tedious to drink as much as they advise.
Love Helen

[HelenParticipant]

Many happy returns to all the stem cells! Tom , that's a heck of a lot of cards;-)
Love Helen

[HelenParticipant]

Hi Ali
What a good photo, your mum and dad look really happy together.:-)
Love Helen

[HelenParticipant]

Hi Ted
The abnormal paraprotein in myeloma is usually found as a whole molecule – like a Y shape, for example igA igG igM. But some people only have small whole pp levels but produce large numbers of small sections of the pp, these are called light chains or Bence Jones proteins and are usually found in the urine. With the new free lite tests you can pick up light chain numbers in blood now. Light chains have a nasty habit of being small enough to collect in and cause dammage to the kidneys, so a close eye is kept on the levels.
Hope yours don't go any higher. Love Helen

[HelenParticipant]

Dear Dai
It is good to hear you are feeling a bit better and back to getting out again, despite the weather. Whilst not flooded, we have just switched our ground floor electrics back on again having had a blackout last Tuesday, some wire under the floor was no doubt sitting in a puddle. I hope the bloods are no worse on Monday and you get to continue with the Revlimid.
Love Helen

[HelenParticipant]

Hi Sarah
I've had infection after infection since my SCT , I've been on 3 lots of A/Bs since august and the idea of giving me immunoglobulin was raised about 6 weeks ago. But a decision not to give me immunoglobulin was made based on the fact that the whooping cough testing showed i was producing lots of good antibodies against the infection, my neutrophils were around 1.3 and my light chains look a normal ratio. Sounds as though Henrys are lower. I'm still working full time but I do wonder if I'm overdoing it a bit, but its hard not to try moving on to do normal stuff again. I think you just have to take Henry's lead here but do ask if there is any chance he might have some other chest infection which is taking a long time to resolve. Whooping cough in adults doesn't sound the same, you don't have the characteristic whoop – all it seems like is a fluctuating chest infection which at times makes it difficult to breathe a bit. I've been at work all the time I've had it as the health protection agency felt I was over the infectious stage before anyone recognised it. But it does leave you low at times.
Hope he gets better soon
Love Helen

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