Hello Alan and Dave
Welcome to the site.
Dave pp levels at 6,it just might be a blip,Jo on here had food poisoning and her levels went up,only to go down again when she was better,its going to be a hard 6 weeks waiting for next blood test.As to new treatments as Gill said lots in the pipe line,
Alan there are lots of people who had SCT on here its worth reading old post,but everyone will tell you,everyone has a different experience my husband is waiting on test to see if he can have SCT and is undecided about the whole process.Let us know how you get on.Eve
Hi Tina
No,no break,if your on intensive pathway,if you have bad side effects they can reduce dose,4 days of dex is very full on.If you have problems please mention them .At least you will only go to hospital for bloods,tablets and Zometa,if you hospital is well organised should be able to do it in 1 trip.
Try not to worry everything will fall in to place,there are a number of questions you could ask
one is what type of mm have I got
which side of trial are you on CDT or CDR
ask for bloods and results of any scans you will soon learn how to read them
keeping copies allows you to see any changers,then if you are not happy you can take it up with staff.
Get books from hospital if not forth coming ring Myeloma uk.
You will soon pick up the medical jargon.Best Wishers Eve
Hi Everyone
Come on Tom admit it right arm pain,how many pints do you have to lift until pain starts!!!LOL
Slims pain started in his back when x,ray came back had an old brake plus new brakes,told would heal in 3 months,6 months down the line diagnosed with MM.
Only went to doctor,s because I nagged him!!!!
My advice is go to your own doctor,quick visit for bone x,ray lesions on bones will show,but saying that Slim has no pain from shoulder lesions or head lesions only brakes and ribs.
18 months down the line he cannot manage with out strong pain killers,although he has Zometa his body has lost 5inches and can no longer stand with out some form of pain.but he is much better than he was.Eve
Hi Min
I feel like Gill,but I am also very proud of you,you have picked yourself up and started to find a new life,as David says we all know what the future has in store,but you are just showing it can be done.
I cannot find you on facebook Min,I would like to keep in touch,I will all ways be grateful for all your help with Slim,you kept me going in those dark days,and I have never been able to repay your kindness.
Have a good life and live it to the full Love Eve
Hi Tom,
I am so pleased for you.I hope we are not going to loose you,now your fighting fit and officially stamped to be first class condition.:-(
We need more people like you on this site,to tell us the good side,it gives a lot of people hope,so don,t think about loosing us,still cannot find you or your breakfast on FB,or Mins.
Love Eve
Hi Tina
My husband was on the myeloma X1 trials had 6 cycles of CDT with a few hiccups in between,It is a 3 week cycle of tablets which you will take home with you nurses will go over all the tablets with you,there will be extra tablets to stop you feeling sick plus others.You need to write out a chart or get a dairy from Ellen its a must for keeping up with your tablets at one time Slim was taking 45 tablets in one day, must keep your water in take up as well to flush your kidneys.
I kept a chart for weight blood pressure and temp. only once a week or if he felt ill,helps to get a patten so you know if things are going wrong.
Do not be surprised if the Dex makes you hypo take it in the morning.
I think the main thing with chemo,is you do not know what to expect,so if you are ill with another illness you just think your body is reacting to the chemo,this is not always the case,so make sure you keep the hospital informed and do not hesitate to stand your ground if you feel ill.
my husband was seen by a doctor,then a few days later I took him to A&E only to be told he was OK and sent home,rushed into hospital 2 days later with septic pneumonia 10 days ITU 12 days on ward,you soon learn to stand up for yourself,when you have a little hiccup.
Listen to your body.
Lots people do not have any problems and sail through treatment,even carry on working through it all ,lets hope this will be you,but being forewarned might just help you,Eve
Hi Bridget
Sorry to hear your having a hard time,i can understand you not wanting to go back another day for treatment,but all that time at hospital must have left you exhausted:-S lets hope it works.Eve
Hi Everyone
Thanks for the info Ellen,I know this is a complicated complaint,but hope you understand how lack of knowledge does not help the patient.
Good luck Dai with your bottle,!!!
Hi Min no holiday yet,as have had a number of hospital appointments,hoping to fit a cruise in before May,looking good.
Min believe it or not if Peter is like Slim,he went off wine and G&T over14 months ago and has tried it since but taste wise,hates it!!! more for me
So do not feel guilty about Peter,I think we just do are best at the time.
We wait on Kings in London for 2 days of test as out patient,only 85 miles to London,then we have to sit down and consider all the facts and limitations SCT may bring,I know we tend to hear more SCT that have failed,
but when you hear Jets failed after 2 months!! it does make you wonder about someone who has serious bone damage and added complications,although they tell me,it does not effect the outcome of SCT.!!!!So we wait.
Slims now under Kings and if no complications except for Zometa we will not see consultant for 3 months.So doing my best to put some meat on Slim,Down to 10st so need to build him up.
There has been an article in the Daily mail treatment verses no treatment but having some quality of life,which has provoked some questions for or against.So all these thoughts are going on,.
I am so glad to see you are coping with all these first,its hard but life does go on and I am sure Peter would want you to enjoy your life to the full Love Eve
Hi Jill
My husband has just finished a course of Velcade which he found ok,except for the hospital visits at your mums age they will only do it once a week,but first it,s blood then velcade and it can be combined with her Zometa so one less hospital visit. It does depend on what hospital you attend some can do the whole process under 2 hrs.some take all day,not very good if you are a sick person,i have yet to understand why my hospital takes all day.:-(
Injection takes less than 5 seconds if it,s subcut,I would push for that,the rest is time making it up,and checking blood,only side effects Slim had was infection in scrotum but your mum will not have to worry there LOL and he suffers with twitchy legs massage helps. Hope this helps.Eve
Hi Dai
Min is right about less liquid needs to be day before 24 hr bottle.!!!!
If I am correct Dai you have Kappa Light Chain like Slim,so bloods do not detect it and urine is the marker,so as Min says how do they know you have it back,have you had a MRI scan or BMB,if its showing in light chain test it has to be going through the kidneys surely.sorry if it sounds stupid:-P
When we went to Kings for talk about SCT,I was surprised that they do not consider BMB as honest marker as cells can bunch together,so if bloods are good and urine not showing correct reading,may be MRI scan as Bridget has is the way forward.When you get conflicting information from experts,it does make you wonder:-/ Love Eve
Hi Tom
At least your eating breakfast even if I cannot see it,explains those cheeky choppers,nice to see a healthy face,Slim loves his breakfast,scrambled egg and smoked salmon on toast this morning,trying to wean him off bacon sausage and fried bread,needs to put on weight but needs good weight,it,s not working as the minute I reduce fat intake he looses weight.:-(
Now you know why he has a name like Slim 🙂
Hope your feeling better and fighting fit .Love Eve
Hi Ros
I would agree with Mavis,mums have to have very broad shoulders your the one person she can hurt,and you would still forgive her time to toughen up lady she is no longer a child and is responsible for her own actions.
There comes a time when people cross a line,get on with your life Ros,Michael would want you to be happy.
What this about breakfast and Toms face book????
Springs nearly here,so you might find it easier getting out and about.Love Eve
Hi Nikki
Your Auntie maggie seems to be one tough cookie to not realise she had a broken jaw, lesions are often there in advanced myeloma they should respond to treatment sounds if Maggie is on CTD which which is first line treatment.
The issue seems more to do with your aunties lung situation,swelling when people are bed ridden is usually fluid which quickly goes once up and about,the danger seems more in lack of mobility,so they should try to get her moving as much as possibly ,it often looks worst if someone has been very active,If your aunt has no children,take the lead and insist on speaking to who ever it is in charge of your Maggie this is not the time to sit back.
They will stop treatment if other issues arrive,this will be there first priority ,then get Maggie on her feet,before she starts treatment again.
I am sorry I cannot reassure you,your auntie is in the best place at this present time,but there is no reason why the family cannot be kept informed.
My advice would be be there as much as possible food and fluid given as much as possible,and keep her spirit up. Eve
Hi Pilgrim
Well lets start as we mean to go on,plasma cells,every person has up to 5% in there bone marrow,this is normal,I wish that my husband had that.
Who needs a left arm,any person that does not have the use of one.
I hope you are breaking open the champagne as I type,or may I suggest walking a mile in some ones shoes who has a disability
It tends to put every thing in perspective
I wish you well on your pilgrimage and I hope you find what you are looking for Pilgrim.
This is from a carer who has a grandson who does not have use of any arms or legs,and is a carer to a husband who has stage 3 Myeloma.
Hi Bridget
Sorry to hear your news,lets hope they can treat the area with Radiotherapy again,lets hope you can go on one of the new trials coming out.
Hope you are enjoying your new computer,and enjoying your days .Eve
