Hi David and Eva
David just to wish you luck with the Revilimid ,,Slims on his forth cycle but only has it every other day 25m,usual regime of CDR but reduced Dex as well.Still do not know if its doing the job,but Slim does seem a little better this month.
Eva entering the unknown!!!!,have you had all usual treatments!!,are you young enough to think of another SCT or are you just weighing the optiona availabil to you?????
Any way good luck for your consultation,hope they can come up with something for you. Love Eve
Hi Mari
Well as they would say up north,yea did him proud girl.
It must have been,a good celebration ,look after yourself Mari,and remember we are there for you.Love Eve
Hi Dai
It's easy done,I constantly remind Slim about his tablets,it's called nagging;-) ,but the minute I do not,he forgets mainly the pain killers,and he pays the price,but as the treatment grinds him down,he is not with it at times,but he will not let me take over his meds.
Saying all that,he seems a little better,compared to the last 3 months,his bloods are at such a low level,but he is not going down hill after the Dex,so that's a bonus,Slim has the problem,they cannot tell how he is doing!!?,8-) so when he is very ill it's such a worry,one time the consultant asked me,why he was so ill,do not think he likes to see patients,who look like deaths door in day clinic,puts people off:-P
I am going to have to have more faith in the consultant,I know Slim is unusual and a bit of a challenge for him,he was of two minds,about treatment,because its knocking his bloods ,on rest week his nuets were 0.3 but picked up by the time bloods were taken to 1.0,if he remains on Revilimid he will automatically go on maintenance until it stops working:-)
I found another trial which is CDP,so there are two trials running,I do not know if you read any blogs on Myeloma Beacon,I have been reading JM blogg,mainly because she is the nearest I can find who is exactly like Slim,.plus it helps to know what's in the pipe line,and I like the way doctors will answer questions on forum,we could do with that on myeloma UK,as some answers cause confusion .
At least with all your experience ,when thing go wrong,you know the reason why. Love Eve
Hi Barry
We live in Kent and attend Canterbury Hospital.,
We ended up going for bloods twice a week,as Slims Platelets never took off but that's another story,his line was kept in for a long time,and had to be flushed once a week.!! In Canterbury,.
I do not know what ward you are in,but one of the wards,has a bigger kitchen and they will do things like cheese on toast,plus if you ask to see the dietician ,she can help,Slim was so bad with the food,but must admit,the kitchen assistant ,kept him supplied with ice cream and milk,you could ask the dietician,for some shots there just a mouthful,but contain 150 cal. He would often ask for something,then when he got it,did not want it,the coffee in the small cafe kept him going.
Hope this helps Eve
Hi Jan
You must be pleased to fit a holiday in if light chains rising,hope you did not worry to much on holiday about them:-(
What will be your next treatment,and how are the family coping with it,wish I could tell you it's a blip,but with them figures ,you know the score,I suppose I should ask ,how are you taking the news!!! But women tend to worry about family.
Also you have done exactly what I did hide the bad news in some ones post!!! Naughty girl,but I do understand why!!!:-S
No scooter yet,I have to be able to fit it in a smart car with a dog!!! No not Slim he sits in the front !! Lol, also I have to be able to lift it in and out,we have more or less decided on a Whispa as the heaviest part is the battery at 11 kilos,so looking for a second hand one,but if we cannot find one will go foe new.
Slim has a full. Body x ray last week,although he has had 2 before he said,he has never had one like this before,my daughter tells me it depends what they asked for!!!,but we know,if its hip replacement,it a no no as Chemo more important.
Any way enough of taking over Vanessa post,sorry Vanessa,hope you feel a little better about things.Love Eve
Hi Barry
Welcome to the site,like you I have never posted on a site before,but I have made up for it over the last 2 1/2 years,my husband was diagnosed in February 2011 ,and I remember feeling a bit of relieve,at least we new what it was after constantly going to the doctors since the previous August !! >:-(
He also had his SCT in Kings,I was impressed with the hospital,but good job Slim was not up to eating food was not impressed,but they there best with what he could drink and eat.:-P
The only thing Slim and I found hard was the 100 days after we're you are still under Kings but 86 miles away,we had a few visits to local A&E plus regular bloods at clinic,so we did feel a little out of things after so much care at Kings,but I am told this is a normal feeling.
Well you have done it,soon as you get the all clear,make sure you enjoy your life,Andy will tell you every day is a gift,so Enjoy.Eve
Hi Jan
So so glad,you could offer advice,you are a natural ,carry on.Eve
Hello Dale and Teena:-)
My name is Eve,and my husbands name is Slim:-P ,and at this present moment this name suits him:-P
I should explain first you should start your own post!!! You have to be logged in,go to newcomers and scroll to end,and start discussion ,this way you will have a lot of people who see it plus you do not take over someone else's post.
Please introduce yourself ask any questions you want,plus let us help you,we are not all doom and gloom!!!:-S I like the way you say Tina soon to be my wife I am told,you have a good one there hold on to her.
We are all on here at different levels ,on different treatments,and we should all be there to help each other,different ages as well,but the one thing that joins use together is Myeloma,a bloody awful cancer,but one that you can buy time,time to enjoy,put your affairs in order,and time to say a long good bye. Anything from 21 years to a couple of months.At this present time I am enjoying an intense time with my husband and hoping to buy as much time as possible.Enjoy Eve
Hi Mandy
Have you. Had any explanation why you are having so many problems with your legs?? Also have you had a look at the Myeloma Beacon site,concerning maintenance,being America they have a lot more imput to questions???
I think you have to do your homework on maintenance,in Slims case it would not have made any difference,as it was back after 6 months.:-(
Good luck Eve
Hi Gill
Well you know what I am like!!!
Slims toy was a Motorhome,we had different ones over 20 years starting with an old VW the last one we bought in August 2010 ,6 months befor Slim was diagnosed,which was a Concorde Carrisma a beautiful van,8 metres 4 1/2 tons ,the dream van.alas not to be used much,we did take it to France when Slim got remission,but it was hard work.
When Slim started his third round of Chemo,I. Suggested we sell it,buy a smaller one that we could use for day outs,weekends,and the odd weeks away,we were both sad to see a lovely van go,but me being very practical looked to the future,:-|
Well we have are new Auto Sleeper,very practical,I can take Slim out for a longer time,because he can lie down,plus fridge allows cold drinks plus bacon butties ,his condition does not allow it to happen very often,but we do have wonderful memories of all the travelling we did.
Now Saint Agur,a bottle of wine watching the sun go down!!!! That's my world!!! And I so miss it. Gill when you get to your French house sit and raise a glass,and enjoy.:-) Eve
Hi Gill
Another first!!!!!make sure you take a photo of it,for memories
If you do not want to take cheddar with you,there is a cheese,think its made on west coast but sold in all Leclerc supermarkets ,look for packed cheese name Ozzy.taste just like cheddar
Don't forget Deep Breaths Eve
Hi Andy
Well I am glad for you!!!
I believe you about the height!!! slim started off 6ft. 1inch Myeloma took him down to 5 ft 8 inches but over a period of time he has gained an inch,we put it down to the Zometa,Slim has been on it from the start,it was reviewed ,but when it came back,it was one a month.
That Dex has a lot to answer for,Slim and I are like passing ships in the night,tried normality ,but it does not work hence this posting at 4 am,learn,t to go with the flow.Love Eve
Hi Dai
This new trial,!!! Wondering if its different than the one I have heard and seen on this site!!!.
If you go into trials on here it tells you all about it,I know about it because someone mentioned it at the hospital, Slims consultant has never mentioned it,but I know he wants to give the Revilimid a good try,although the BMB was patchy!!!!
I suppose because options are being used up fast.
Slim hits rock bottom over 3 weeks,with fatigue unable to do much,bloods are frightening,has a week off ,but it takes that time to recover,then it starts again bloods,plus he is only on Revilimid every other day. When you were on Revilimid what was the dose ????He only gets out with me pushing wheel chair,but he has agreed to have a small scooter.
When I looked on here Canterbury is down for trials,no criteria,but it's Pomilidomyde ,low dose or high dose Dex. Are yours the same.!!! Eve
Hi Steph
Welcom to the site,you are doing the right thing by gaining as much knowledge as you can,and you are all ready having a taste of the side effects that are effecting your Dad, Dextatude 😛 ,not everyone is effected and some only to a small degree,I take it you want to know about all the blips that can happen,just in case!!!:-( , Well some one told me some of them you cannot prepare for,!!! But once you experience them,you will know next!!!.
What you have think about DD might just sail through everything,it does happen,people will come on here and tell you just that,others are the opposite side ,and there journey is different,I would not go there unless it applies to your Dad,,Myeloma does different things to different people,you will find everyone's story different,that's why they call it a roller coaster.
My husband was on Myeloma trials randomised. For CDT,after 6 cycles and a blip,did not work,so on to Velcade.,that is the first hurdle you cross.before SCT.
1. The Dex is a bit of a bummer!!!,always remind Dad he is on Dex so he at least knows were his attitude is coming from.
2. Dex can hide infections,so you have to watch out for that one.
3. Trust your instincts if you feel something is wrong make that call.
4. Keep a monthly chart,will show how things effect him
5. The dreaded diarrhoea or constipation,it can decorate the floor;-) sorry I have a funny sense of humour. Lol
6. Take one day at a time,give your Dad space,make your own space,let him care for himself as much as he can.
7. Claim any money you can,you will need it,plus blue badge,see Mac Millan nurses they can help with paper work..
Be positive and it will keep your Dad positive.Eve
Hi Vanessa
Hope things seem a bit clearer today:-)
If you stop and think about everything that's happened ,which would you say was the worst!!! The Myloma, so this is just a blip in the scheme of things,you do need expert advice so don't despair
This whole thing is very stressful,!! So if you can get help from another source like Mac Millan,accept it,many people on here have had different problems specially with insurance pay outs,for ill health,so tell your husband to stop thinking he is failing you,I know one person on hear,who,s insurance would not pay out,said he was not sick enough.!!!
Mac Millan helped me with a few problems,all done by phone.Love Eve
