In hindsight for me i wish id been a bitt fitter post asct then i would have pushed harder about the nasty leg pain and pushed even more than i tried for a post sct bmb to see whole picture,slim has you to do…[Read more]

Eve mine showed increased uptake in my shoulders and clavicle area ( i have rheumatoid there) and they could tell the difference on pet from the more than 5.6cm lesion in femur where i get pain and the mega uptake there so they are not being accurate… keep pushing i had to change consultant and so glad as ive crashed now…[Read more]

What wonderful ,superb long awaited news ,hurreh.
If it keeps working you may be able to stay on rev a few years = as good if not better than transplant and without the tranplant nasties

wishing you all the luck and wishes of next time good results too 🙂

best wishes
Sue

I had asct similar time to Slim I think (May 2012)
I changed consultant in Feb as my old was was saying come back in 3 months despite nasty inc bone pain,He had finally booked mri but……. new consultant spoke to radiologist and they decided i needed PET scan as i had had lesions in arms and femurs before and PET would show whats…[Read more]

Im a wimp and still 7months after sct I need to sleep in day most days or just rest especially after a busy day and when i sleep im deep deep sleeping like body really…[Read more]

What works for one doesnt for another happy dex times,unforgettable

best wishes
Sue

best wishes
Sue

I only know from my asct my platelets went down to 1… I had numerous platelet infusions.
I think their magic number was 10 and below=platelets given and i was allowed home when above 10 under that i was too big a bleed risk.

The spleen can sponge up platelets reducing the circulating ones ,if theres liver problemsare your…[Read more]

How long did you get from first sct? also how do you manage to get the Thal,were you part of a trial.
I havent found maintenance availiable unless trials here.
I had my asct in May and despite good bloods i have increasing bone pain in lesion areas from…[Read more]

Will cross my fingers here too.

Hope tests go fine and you get a good date for the SCT

Christmas in hospital just check full in hospital services as often less drs etc and pharmacy being less open.

You may need your son more after the transplant when your at home?

I was harvested 2 years before i had my transplant they…[Read more]

Is she any happier now shes made the decision?
I'm pleased she made a decision she wanted not what she thought she ought to do

Maintenance is common in USA but sadly not here unless part of the myeloma trial.You could call lovely Ellen at myeloma uk helpline she can find out if any maintenance trials for people not having…[Read more]

It will get easier ,I'm six months post asct and finally feeling more human .
I was in for a month and didnt have an easy ride and was shocked how i felt after it.

It was very frustrating and tough but i just tried to think this is part of it and accept it ,hoping i would be like others and feel normal again.

I slept a lot and…[Read more]

Thats a difficult one as all seem to react differently to it?
Many seem quite bright have a few rough days during it then are typing progress while recovering in hospital.

If you search here sct or asct you will find posts some blogged during the experience.

I had mine May 3 rd this year and its only the past 3 weeks i had any…[Read more]

I have had a lot of bone pain(plasmacytomas and rib fractures) and tried various meds,morph tablets then mst,oromorph but pain remained nasty so I contacted my macmillen nurse ,who…[Read more]

Two thoughts ,he may need a longer course of antibiotics? the lungs have so many pockets that if some infected muck is left it will just regrow in a week or so.
Do his lungs feel tight at all or does he find it easy to cough up? I woud suggest askin about an atrovent inhaler as this would open his lung tubes and help him keep lungs…[Read more]

I would guess your ? enlarged prostate isnt helping with the frequent UTIS
I think /hope you will get less after your prostate is improved.

I understood that we were high risk for non encapsulated bacteria ie the ones that love the lungs ,my immunologist told me this many years ago when i was just a MGUSER .

I had an ungrowable…[Read more]

I think i was good until? 6 days after melph then felt crap ,but was monitored extremely well with my bumpy times.
I too sucked ice 2 hrs pre melph and 2 hrs after ,ice was fine but my mainly soggy lemon ones tasted awful but i just munched on ,i had…[Read more]

I think the "standard" is to give cyclphosphomide then gcsf injs but I know Dr Cooke at QE Birmingham didnt give these when i last saw him .

I looked up to see how likly i was to predict ease of harvest and decided against the cyclo from my consultant.I didnt want chemo affecting my stem cells pre harvest,some say it does an extra…[Read more]

Sue

Thats awful,times like this i feel so helpless.. sending you strength and my thoughts i can understand he feels need to delay asct.
I go in tomorrow for my first ,melp on weds i delayed till first relapse
sending a mega tight cyber hold

love Suexxxxxx

Well it depends how they do it ,my hospital gave a cannula in each arm one takes blood out then it passes through a machine scoops out the cells then back in to body in the other arm so i had 0 movement had to keep both arms straight for hours !! others have a hickman line or similar and would be able to move i think.

Just take them…[Read more]

After trying numerous analgesic I started matrifen patches 12.5mcg/hour(fentanyl)
I had tried to get a longer lasting analgisia to maintain the level in blood and be more consistant.
I also managed to have a tooth absess the same day I started it ! so have had…[Read more]

I would love to know too how you managed to obtain a year please
Im in cycle7 of what i thought maximum allowed care of NICE was 8 cycles only ,my paraprotein plateaued and has since regained a few 20% drops but is still 10 g/l
I can't tolerate the full 1/3mg dose for each week but need to decide if worth trying for all 1.3 doses…[Read more]

I would love to know too how you managed to obtain a year please
Im in cycle7 of what i thought maximum allowed care of NICE was 8 cycles only ,my paraprotein plateaued and has since regained a few 20% drops but is still 10 g/l
I can't tolerate the full 1/3mg dose for each week but need to decide if worth trying for all 1.3 doses…[Read more]

Thanks for your response that is appauling .

When I had my first treatment ,lasted 12 days on cdt..then had 7 cycles of Velcade , cyclophosphamide,dex ,I chose this i was offered VAD and pushed for VCD/CYBOR-D as it had shown to be more effective than VAD and i was in a mess from CDT and VCD and more tolerable than VAD ,my old…[Read more]

Thanks for doing this for us 🙂

I don't know if these are relevant but these are a few of my questions

1/ when and how can we get fish genetic testing from bmb more universally done ,rather than if you are at a forward thinking hospital ie the marsden?
(we are so far behind america who are already making treatment plans more…[Read more]

keep taking the thinners and takecare shaving 🙂

Sue

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2…[Read more]

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2…[Read more]

Sorry youre back on treatment 🙁 how long was your remission post sct?

I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2…[Read more]