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 his fighting 🙂 which must be hard on you.
Maybe if my leg had been looked at properly earlier it could have been radiated and treaded drug wise after if needed to keep me at bay,this is what my new consultant hoped would happen but my bloods were so good except pp in fbc and i was new patient he was like 5 months past my view 🙂
You can quote me to your drs as a real person who pet scan was needed to see what was happening in that bone and how i have fallen off cliff my gps words sooo fast
Yes i am a trained nurse retired with back injury was a ward sister but had the precurser mgus when daughter born nearly 12 years ago so had been watched 3 monthly always from then and when i saw changes i started learning a bit of myeloma but had building blocks from mgus.
I contact imf in america rarely o get facts im too tired to search,Judy and debbie are lovely and will always email a dr to check their opinion if needed so helped my relief knowing i could hope for + 50 platelets after infussion which i got 🙂 so that was lovely I always think 2 heads better than 1 then you confirm your view often.
Zopiclone 1-2 3/4 hour pre bed is a great sleeping tablet i have used when bone pain and night sweats so bad the body does so much healing in sleep also ask for his vit d lvl blood test many cancers are low one study showed ? 70% myelomics are and low d doesnt help pain i had stopped taking during my sct post time bit before lvls were very low.
in america patients often have bi yearly pet scans to se complete picture of activity ,push about the pain and u know bmb good at mo but you need to know cause of pain as good analgesia may mean myeloma lesions that could be helped and you both deserve quality of life 🙂
hope havent missed anything im dopey hyper dexed but pain sooo much better after 2 days dex 20,10mg (lower to prevent myeopathy)
Have you checked out the other haemos there by word of mouth or myeloma uk it may be ? you feel like me maybe a considered change is needed mine was finally going to mri but same hosp changed one spoke to radio and they said pet needed as had had radio etc on femurs so wouldnt get accurate picture
hugs and best wishes
Sue
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 soooo fast maybe ?? if they had listened last year i could have seen it coming who knows ? I was and am on 50 mcg patches and pre radio needed oromorph maybe 2times a day but i was ignored then in dec ,see u in 3 months not a month then this happens hmm
Dear Helen
I do not want to hog eves post 😀 but was so touched by your response,week on platelets dramatic drop on report went to 11 and hb from 14 to 9.9 in maybe 1 month ……..neut dropped never do that mone haha.. to 1.7 but back week after on right way at 2.2
bmb aspirate looked at no report yet but aspirate an incredib;e 90-955 [plasma cells so had platelets monday and platelet responce 67.000 (you can expext 50.000 if 1 unit taken and works) Back Fri for bloods prob need platelets again.Started on high dex as per cdt regime but bit lower dose as have had dex myeopathy in past im mega sensitive woman 🙂
Clinic next Tues if bmb showing benefit from dex via bloods the add Revlimid 🙂
msg so appreciated HELEN 🙂
love to all esp Eve and Helen and Eva
xxx
Sue
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 active.
My pp reappeared in J an at 4g/l 🙁 Had pet in feb showing very hot spot in rt femur 5,2cm and a few other unusuals by end of Feb PP up again and up to 23.6 early march and 30.3 end of march despite 4 shots of radio 🙁
Ive had the nasty lurgy and whether thats had affect on my platelets i was stunned to find they had suddenly dropped to 25 ! 2 weeks ago so its bmb tomorrow and start treatment Tues ,Rev and dex if platelets good enough,strangely hb,wbc are fine just saying as im shocked how fast things went wrong from untraceable pp in Dec
Good luck to you and Slim
thinking of you both
SueM
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 needed it.
For first 4-5 months i think it was like i had an internal timer 2 hours up then eyes heavy and just had to return to bed,very frustrating but asct does take a massive toll on the body.
If your eyes are also dry? then may be related to sjorgrens syndrome,mine hasnt been as happy since transplant and im having tiny flairs of what was controlled rheumatoid arthritis.
Just keep sipping ,i wonder if aloe vera juice watered down my help mouth restore faster?
I was told that even with tiny meals i ate try to get bits of protein in ie eggs are good to help the body recover after its poisoning
feel better soon
Sue
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 secretors)
Mavis i get new forms at end of appointment and have bloods done 2 weeks pre next one they are always ready when i have the appointment,pp test should be ready in 7 days then time for Haemo to get results.
Keith I'm so wishing your marrow boosts soon
best wishes
Sue
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 liver blood tests good?
Plse take it easy as your platelets are very low do not bump things,cough gently and shave carefully etc which I'm sure you already know.
Willing your bone marrow to behave and boost up a bit
best wishes
Sue
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 before so feel low dose Thal may get these if NHS would prescribe
best wishes for another 4years clear
Sue
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 only did the tests just before transplant
all the best
Sue
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 SCT
How many cycles od CTD has she had?I realise shes feeling worn out but if she can have the max cycles or have it prolonged to get her best response then she will get the deepest response she can and hopefully have far more "normal time without drugs ie a longer remission.
Many recommend that say 8 cycles are allowed if at 6 cycle person shows complete response or has stayed same they should do another 2 cycles to deepen the response,some drs here seem to think levels ok at say level 6 and stop but thats not whats written as to how it should be done.
Do you know what her paraprotein level was at start and what it is now?
If shes having side affects they may agree to reduce dosage and continue? Thalidomide does make many very dopey and this increases with dose ,I only managed 2 weeks on it as my cognitive skills when dreadful but velcade suited me
Also do you have a macmillen nurse? they are supportive for both you and your Mum and can liase with hospital etc if needed
hugs to you I helped my Mum when she had breast cancer and its hard having your views and theirs differing and wishing to have a magic wand
Is she harvesting her cells just in case she changes her mind in the future(they can be frozen for 10 years)
If was me i would be happier to have them frozen in case i changed my mind she needent have cyclophos prime (consultant mark cooke at qe Birmingham does use it for 1)
http://bloodjournal.hematologylibrary.org/content/114/27/5436.long
maybe useful info goes through all the steps including what to do if patient not having sct(you could show dr the relevant part?)
best wishes PS I didnt have SCT after first treatment had no maintenance and got 12 months before needing next treatment the average response/remission from sct is 12 months to 18mths
Sue
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 still need a day nap ,but made sure i walked downstairs once a day and moved my limbs ,sat up in bed at times to prevent complications.
I didnt have the energy or brain lol to post 3 weeks after mine so youre stronger than me 🙂
Your stomach will have shrunk if you didnt eat much in hospital and i found i had an oversensitivity to chemicals so ate grapefruit segs,fresh cherries and grapes and finally eggs with a little bacon and cheese and tomato sandwiches over the coming months.
Keep trying to smile and doing what youre doing .
Protein foods are important to help your bone marrow recuperate so try adding a little of those if you can .
Wishing you feeling better and stronger thoughts
take care
Sue
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 form of stamina ! I still need to sleep in the day but I had had a year of treatment pre mine so was already worn out and im a single mum of daughter of 11.
I was in hospital a month …. but im still in remission ,i delayed transplant until relapse and got only 11 months off treatment,so think the transplant will seem better if i get a decent remission from it.
The side affects of stem cell transplant ,sore mouth(mucositis)I only got 1 small sore but sucked ice pre the melphalan and after,fever /infection,diarrhoea for some weeks,nausea and vomiting(theyre great o giving anti sickness meds but I had "morning sickness" could not keep anything down and smells were amplified 100%!,fatigue/weakness
I hate putting the negatives …….. but its a hard time for some like me but others manage fine .
don't know if ive helped or hindered just wanted you to see my negative and the hopefully positive ones that others will post .
some people have blogged their day by day accounts whilst undergoing asct ,try google
best wishes
Sue
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 visited and suggested morphine patches ,I had been given these before by consultant but hadnt managed the dose,turns out he put me on 50 !
She worked out how much oromorph daily and tabs i was on and worked out my correct dose and sorted with GP for my prescription.
I still have bone pain but rarely a nasty bone pain day
Is he drinking enough as flank pain can be kidneys but probably is back related (i have prolapsed disk not from mm)
I hope you both get some relax ,comfort home time very soon
best wishes ps great news on the nice PP drop
Suem
