Hi Eve yes hindsights great but my brother said some years ago it comes later sadley so all you can do is what seems best at that time.

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]

Dear Eve and Helen

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]

Dear Andy

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

Hi Eve

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]

It will improve the Melphalans affect last a while .
Sleep when you need to ,your body is weak just make sure you walk about everyso often to prevent clots and ch infection etc.

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]

I would include calcium(kidney function) in that and creatinine(kidney function) ,beta 2 microglobulin (if increasing may be first sign things are on turn) ,and free light chains( pp have a long half life so the test ist as up to date the current whats happening free lights show what happening maybe ages before pp rise and some become non…[Read more]

Hi Stevo,
It isnt auto absorbed it has to be broken down in the stomach,absorbed into bloodstream.I took it 30 mins ish after sleeping tablets then for me i could get to sleep 🙂

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

best wishes
Sue

Hi Stevo,can only half raise mine as i did enjoy the supercharged brain dex effect ,i suddenly organised lots i'd never sorted like a mega spring clean but the zombie crash feeling is not nice.
My family always knew my dex days as i talked for england 😀
I took mine before bed but still had disrupted sleep

best wishes
Sue

Hi Keith.

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]

Val what wonderful news 🙂 4 years in remission after secondsct.
Thanks for sharing

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]

Hi Peggy

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]

Dear Sarah

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]

Hi Tina,

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]

Hi Sarah

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]

Sorry to hear this.
No its not always like that,I was diagnosed mm in 2009 april and touch wood have had no hospital stays except May for my stem cell transplant.

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]

Hi Sarah

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]

David.

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]

Hi Vicki
I'm so happy,cells stored and now sct.
I hope it goes as smoothly as it can 🙂

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]

Hi Peggy,

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]

hugsssss Dai,why did it take them so long to diagnose? didnt they send stool samples???!!
Im running on 50% 4 months post sct !wish i was as strong as the men seem to be post sct?? lol so im only reading bits of our forum past months
I hope you will soon be feeling your better self 🙂 Drink lots and rest and smile ur made of strong stuff 😀

Sue