Hi Babs
my husband had his SCT,on X1 trials,then was randomised for no treatment,at first,with the knowledge of no treatment follow up,it felt very strange,but now we are looking at it as a bonus after 2 years of constant treatment,he attends hospital once every 2 months for Zometa,and at the moment consultant once every 2 months,this gives us a good break,and if we want to go away,they are flexable with the appointments,so for us it has worked out well,it just remains to be seen,what the future holds.
As for damage to the bone structure,Zometa will only do so much,we just accept with so much damage to the bones,medication is a must,i consider its not a big thing,when you look at the big picture,and anything that helps with the bone pain is a must.Eve
Hi Maureen
I would not base your knowledge of one department on were you should have treatment,your husband ,s treatment for spinal work,might be different from the cancer unit,some have just designated wards and some are better than others.
My husband had a choice of 3 local hospitals for treatment,we chose the one first attended as he had been in there for 3 days and it was excellent,but he had a nother spell in hospital with pneumonia and after ITU went to a general ward,as they said although caused by MM it was not directly related,it was awful and since then on two occasions I have stood my ground in A&E,and fought to get him a bed on the main unit,not easy.
So do look at the hospital from all aspect.The treatment and consultants are the same in the area,its the care that you should be looking at,specialised wards are very important. Eve
Hi Peggy
Sounds if you have had a bit of a do,do not rush getting out if you are not right you will only find yourself back in,in no time.
As for the comb over have a word with a nurse,see if they can find scissors ,must have them in a hospital,they did in my day.
Best of luck hope things start picking up for you.Eve
hi Heather
it is a bit mind blowing when you join this club,lots of information to take in,it,s a learning curve,try not to worry ,you will in time learn all the jargon,and will become an expert on your husbands condition.
my advise is get in touch with Ellen she can put you in touch with someone who you can talk on the phone so you do not feel so alone.
Velcade is a good treatment and it is having good results,my husband had it as second line treatment,then SCT and is in remission,we met people in there 80 on Velcade all doing well and keeping the Myeloma controlled.
We have just got back from NZ,so there is life after being diagnosed with Myeloma.
Make sure your husband drinks plenty of fluid,as much as possible report all symptoms,get a note book and make notes,it all helps. Eve
Hi. Chris
Just read you. Post with great interest,my husband is not in your position concerning SCT second time round so unable to comment,just storing info for future ,as we all know MM will find you.
I can say I think Velcade is a not as harsh as CTD,but y ou do spend more time at the hospital ,I would like to see Velcade given as a maintenance drug,but it is only on trials for second line treatment,I think if I am right,if the drug does not reduce the myeloma by 50 percent the NHS does not have to pay for it !!!
So although the drug is effective its costly and again money raises its ugly head, buying time against cost,there is some figures out on the myeloma x1 trials,concerning people who have had it as a second line treatment after CTD failed,and its all good news.
So I can understand the experts view just Velcade or Velcade then SCT. Nice to hear from someone who has had 9 years.i hope trials will be considered for Velcade as a maintenance drug,we will have to keep our eyes turned to America,as we usually follow them. Regards Eve
Hi Sue
I just cannot believe this is happening to you.i do not think it is different we're every you live.
You should have a package sought end by now it can be different depending on your needs.were is you local surgery,in this get in touch with the district nurse,she should be able to sit down with both of you,and decide what you want.
Hospic,s are very good respite is good,they can offer you so much,they can arrange a team to come in for an hour to give you a break,if its what you want.
The palliative care team,is excellent ,people think its just about dying,it's not they are doctors there that are experts at controlling pain,by contacting them you are not moving on to the next stage you are organising care and pain relief,it is so important the last memories should not be about how much pain or induced sleep your husband was in,go and visit your nearest hospic just pop in or ring them,there is no need to be afraid of the unknown.
Please pick up that phone.Eve
Hi Sue
I would agree with |Tin,I know you feel how an earth are you going to cope,but you will find that inner strength.
I have 2 friends who have both lost there husbands last year,one to Myeloma and one to lung Cancer,both stayed at home and both had different deaths.
Both the wives coped and have no regrets,I wish I could say I was there for them,but Slim was having his SCT and the other one was so quick,its the fear of the unknown that is scaring you.When the time comes,you will step up,but be firm if you want,Michael at home and thats what he wants,push the district nurse.
You are mourning now,so do not be afraid of your feelings,the thing people want is that there partner is in no pain,so be firm. Love Eve
Hi Trish
Yes it is wonderful that first holiday,after SCT,as you say you just could not believe this would be possible after Myeloma,so just go out there and grab a slice of life.
we are just back from NZ,blood test Zometa then consultant,and with a little bit of luck off to France in our motor home,then home for 1 st march as my daughter won a holiday to the Bahamas for 2 people.so kids need Nana.
I may not have Slim back as he was,but what I have is special,but he can be a grumpy old man still,cannot let his head get to big. Love Eve
Hello Dai
It is nice to hear you are doing well,with this new treatment,I just want to wish you well and to let you know although Slim has moved to remission,you are never very far away from our thoughts,I know the last few months have been hard for you, I wish you a good 2013with not many hiccups. Love Eve and Slim
Hi Tom,
With baited breath and anticipation,now I know why you drink vodka,you cannot smell it,( only joking ),it is the reflection time that hurts,that,s why it is so nice that Tina can reflect and enjoy the memory.
This is what is good about this site,people understand what you are going through plus the feelings which do come to the fore,even with remission,I do not think the person with myeloma or the carer ever goes back to being,the person they were before,but everyone expects you to be that person before Myeloma,and me as a person expected to go back.So as you say Tom there is only one way Onward and Upward.
I like your onesie Tom who bought it for you,who ever it was has a great sense of humour.Love Eve
Hi Tina and Tom,
Happy New year to you both,this New Year seemed very strange to me,as We were going backwards in time on our journey home from NZ,and a;ways at new year your mind goes back to the last year,and you cannot help but ponder and reflect about the good and bad of the year,and wonder what the future year will hold.
the year 2011 which was bad for us,my thought were it cannot get any worst,but as usual,I was so wrong,we lost Matty,the good was that Slim had remission plus SCT,so again bad and good,plus hospital visits have been reduced to every 2 months.So another plus.
I find myself looking for the good,in every bad thing that happens,wish i could be like you Tom and just keep looking upwards.
Tina it so lovely to hear you being so positive,although you lost your husband,and so nice you can find enjoyment eating cold ice cream on the beach,I can just see you smiling as you look at your garden and reflect what Patrick would have been doing,if his life had not been cut short,and its good to know you can look back smiling although you have lost him,that must be the good,in such an awful situation .Love Eve
Hi Gill
I am in NZ,one daughter in Turk and Caicos island,Ruth lost Matty is this Christmas is hard for all are family but we might not be allot get her,but Matty is never far away,so no matter were you spend Christmas,there will always be that feeling of absence .
Gill you have your grandchildren to keep you going,so promise yourself,you will never ever spend another Christmas like this,even if you just go on holiday,.
We all have to cope the best way we can,and I believe you are a strong person,get over this Christmas and make yourself some promises.love Eve
Hi jean
Symptoms are palpertations,but have to be very low,drugs are awful to take,so stuff him with bananas plus apricots,make sure he eats at least two a day,that a potassium aby way.if he starts to feel unwell it's a bit like starting a heart attack,it is important that it is corrected,why not go and collect physcription.
Have a good Christmas jean love eve
Hi Keith
Alarm bells start ringing at under 20,Slims went to 17, need platelets below 20' your blood is low to,so I see a transfusion coming,give you some strength for Christmas ,it,s worth it Keith,try to have a good Christmas .love eve
Wishing you all a happy Christmas ,and for those who are going through a bad time,I hope things improve,my thoughts are also with the people who have lost loved ones,and people who are near the end of there journey .
New Year. Will for me a journey going back home,leaving NZ at 23.59pm so we will pass many countries welcoming in the new year arriving back in UK on New Year's Day.
My. Best wishers to you all,love Eve
