Hi Maureen
You are right to get a second opinion ,you do not need a stroppy doctor,Slim has always had the cyclophosphamide and Dex combination,you need a hospital that is able to tweek the treatment to suit the person.
Better to get a second opinion in the early days,I would look up to find out more about the hospital and consultant,you do need a Myeloma expert on board!!!
One husband one life,you want the best for him,so do what is necessary ,stand your ground.
Good luck Eve.
Hi Helen
Good to know you are doing fairly ok,may be pomilidomyde will be the one for you!!!
Slim did well using Velcade second time round,knocked to 10 percent on 3 cycles,the platelets and artery blockages were the problems.
Once he realised what was going on,had an impact,but just wanted to get home,did not want it to be this way,but the damage was done !!!
They upped his OxyContin plus gave him Another drug,that resulted in a build up in the body,so had to have an anti dose ,not nice,plus had brain scan,no damage????
At this stage you do not have much choice but to cope,hence this at 0300 .
The realisation that you save the NHS millions of pounds by care in the community,and the package for care at home,has not been thought out properly.
They asked me would I be bringing him back to hospital near the end,and as blunt as I am,I asked why?? To spend 7/9 hours on a trolley and die in A&E,because of the complications involved I am trying to get a few things in place now.
I think they will offer hospice relieve,but do not think he will take it up now he is at home,they gave me no time to approach the subject slowly.
He is in acceptance ,ruling the roost at home,but I would not expect anything else of Slim,he feels if he can control it’s going to be ok.
I can only say to you Helen,just keep that determination going,it will keep you going,holidays,weddings,all thing to enjoy and look forward to.
Why worry about tomorrow and spoil today,love Eve
Fiona
You have had one of the best experts in Prof Morgan,Slim had Faith Davies,but sadly both going to America in July!!
Just sent an E Mail to Sharon thanking the unit for all there support.
Andy was on Revilimid for 22 cycles ,Slim only got 4 cycles as it knocks bloods to nothing,but Andy is the better one to consult.
I think the difference with the Marsden they tweek treatments,for example Slim was given platelets if they fell below 30 were local hospital it was only 10,plus cyclophosphamide was only taken if nuets were above a curtain level and always after blood test !!!
Hi Fiona
Children never say much,and I personally think we do not give them enough credit as often they know what is going on,but do not want to upset mum and dad.
Matty,my grandchild died two years ago and his sister is still going through therapy,it’s not an unmentionable subject,but both siblings have problems on a day to. Day basis.
Looking back on are experience we should have sought a second opinion,I do not know if the results would have been different,we will never know.
I think you should take into consideration the statics Slim has come in the 4/5 year rage,we are 3 1/2 years down the line,he is now on palliative care.
The Myeloma is only 10 percent it’s the damage along the way that has resulted to his situation.
I hope this is helpful to you,and gives you some knowledge and strength for the future ,as Andy says every day is a gift,unwrap it. Love Eve
Hi Fiona
It does sound if Philip is high risk,they use this term when treatment works well,but starts up again as soon as treatment is finished,which does not give you much time free of treatment,
We all hope for remission,and not to be on pills all the time,all of this is a gamble at choosing the right drugs,as you know in Slims case it did not work,looking back you have to keep yourself well informed to know which way to go.
I also think having children plays a big part in your choices,as they have to live with the illness too..
I would get in touch with Jet as she has had her own cells plus a donor cells,worth finding out all the info you can,also Look at the blogs on Myeloma beacon Deb Bones is having some heavy treatment before SCT as she did not get much remission.it might guide you both on making an informed decision .
I just wish I had the knowledge a few years back,I think we would have chosen different things. Good luck Princess Fiona. Love Eve
Hi Helen
I sent an E mail to you!,So my question is are you alright????,or just making the most of this beautiful weather.
Slim has had another spell in hospital,he comes home today!!!at peace with myself,would have liked ,the hospital to forget about ticking so many boxes and consider the patient and carer before they feel the need to send in palliative care team,with out me being there!!!!
These experts need lessons in communication,what happened to the theory of if a patients wants to know they will ask!!!!all of a sudden it’s the patient has to be informed,I wonder if it’s for there benefit or the patients!!!!!puts you off having experts on board,
So I hope you are not going through a blip???
Hi
Myeloma has a major effect on carers,it is wise to know what to expect as the years pass and learn to come to terms with it,as the years go by you do learn to accept and come to terms with your husbands illness,so try not to look to far ahead as nature will take it’s course and as time goes by acceptance and a form of peace follows.
On a more personal note I would not have missed one day of the last 3 1/2 years,I find it very difficult to leave my husbands side and have become very protective of him in every form but this is a personal thing you have to find what ever is best for you, we are all different and as carers we handle things differently.there is no right or wrong way,just do what ever you have to,to keep yourself in good health
It is very early days for you,your husband has problems with his movements!!! As treatment progresses there is a good chance this might improve,in the years we have lived with myeloma,my husband has used a wheelchair when needed but most of the time managed to walk and this is very important excise is a must!!!!
As for your own space be honest with him,tell him,if he likes watching sport on TV plan time out,I found my dog very useful he needed walking twice a day,as Slim improved he came out walking as well,now I have that little space to myself again,so walk the dog when the carers come in.
I hope this helps you on your journey,why worry about tomorrow and spoil today.Eve
Hi Mike
We come from the south east coast,called Deal,you can see France on a clear day.
Slim used to have treatment in Canterbury,but was refused any more treatment at Christmas,Faith Davies agreed to treat him,we usually hit the rush hour going as clinics are in the morning,always the odd accident,it’s M20M26M25.then 8 miles to Sutton ,it depends how long every thing takes,some times we hit it on the way back too.
Slim had his SCT at Kings in London he did not get much remission only 6 months.
It does make a huge difference to newbies,to know that it’s not all doom and gloom,that people are getting years plus many having second SCT,there has been a post on here a man was in his 18th year,if you look at some of the video s there is a woman who has had Myeloma for 20 years,my husband was just one of the unlucky ones,
Good luck Mike I hope you have many Myeloma free years ahead of you. Eve
Hi Jane
Welcome back,you have been through the wars,battling away,so glad you made it,to tell us about it.
Let’s hope this is now your time!!! Go out there and enjoy every minute,the experience does give you a different out look on life.
Ours is being here each year to smell the blue bells,heaven on earth that smell.Eve
Hi Sandra
Just to say welcome
As you know your condition is rarer than Myeloma! I believe 600 cases a year,I would go back in to Related Conditions,you should find a few in there with Amyloids in the heart,they one I am thinking of is an Ozzy who lives with this condition who also travels,so might be worth a search.
Good luck on your journey,my saying is why worry about tomorrow and spoil to day,it’s kept me sane and fairly up beat these last few years on this roller coaster. Eve
Hi Mike and welcome
I think may be what you do not realise is your good news of lasting seven years,if you look at statistics when you are a new MM it’s depressing,and some one like you comes along and says 7 years,you give the newbies so much hope. The waiting room is so small at the Marsden,bit like sardines in a tin,you cannot help but talk or listen !!!!!.
I liked the Marsden very much,it’s worth a 3 hour journey up there.
I would say to you be proud at how much remission you have achieved,give the newbies hope!!?, because it’s hope that keeps you going!let’s hope you have many more years. Eve
Hi Denise and Carol
It’s a sad fact this disease has a massive impact on all family members,most people know there is something wrong but when it’s diagnosed it comes as an awful shock,I think it’s because there are so many different symptoms,either bad backs,or broken bones,there are only 3000 cases a year in this country,then you get the different types of Myeloma,I think there are about6 but some are harder to treat,although the treatment is the same more or less for everyone,
It’s worth getting in touch with Ellen or Maggi on the free number,because there is so much to take in??? It’s a big learning curve,we call it a roller coaster!!!!,so welcome to the Myeloma roller coaster,I never liked them specially this one,but have got use to the ride with all it’s ups and downs.
Make sure your Dad takes things easier,because it’s not a small illness,we are 3 1/2 years into it,it’s a long journey and it effects everyone.
Carol I think everyone is effected by the steroids,and you are right in saying,you as the person going through the treatment,cannot take the carers pain on board, it was so hard to watch Slim changing into someone who had real issues and could not see it was because of the steroids ,but you do find away round it,even if it’s just going for a walk for 5 min..
Welcome Denise,I hope you find this site informative.Eve
Hi James
They like you to be 12 months clear and to have had a good response .nice guide lines is it’s allowed if you have had a good response .
Revilimid they usually use until it stops working.
Pomilidomide is the latest one coming out in trials.
When he says chemo!!! Is he talking just cyclophosphamide ????
You can go into trials on the forum and find out at least what is being offered.Eve
Hi Vicki
Sorry to hear you think it’s coming back,it is a bit of a blow and takes time to get your head round it,but you have to pick yourself up and get on with it.
If I was you I would try to fit a few more holidays in,because you just might go on watch and wait until treatment is needed,so make the most of your time now.
Worrying about tomorrow spoils today.Love Eve
Hi Princess Fiona
Yes lucky to live in a lovely place,we usually take the dog for a walk along the sea front,on a clear day France can be seen.
Hope the children have a lovely time when they come and this beautiful weather holds for the rest of summer.
The hospital visit was not great,4pm appointment got platelets just after 6pm,I think some one must have forgotten to order platelets from London,so nothing has changed locally,next week it’s the Marsden so things should go smoother. The local visit just reinforced why we go to the Royal Marsden .
Cannot complain,beggars can no be choosy,but it’s over now.Eve
