This topic contains 29 replies, has 18 voices, and was last updated by 
eve 11 years, 7 months ago.
Hi Everyone
I have tried putting off this news,and just slipping it in on someone else,s story,but we have finally come to terms with the fact,the Myeloma is back.
When we asked for a BMB it was for our peace of mind,as Slims Myeloma does not show in bloods or urine,as the consultant said it is very unusual,anyway he went for the 100 days BMB and it was 0.00 myeloma cells,then he had another BMB 6 months later and it was 10 percent . We are waiting on full body ex rays plus MRI results.seeing consultant on 12.another BMB in May..
It is starting to manifest it,s self very quickly ,very tired,whole Skelton pain,co ordination ,the myeloma seems to be in a hurry,but this time the experts are not.
When this starts first time round ,you manage to take this Myeloma and adapt as you go along,but when it comes back again specially within 6 months,and you know how hard it is going to be,it is harder coming to terms with the whole process.
My thoughts as a carer for two and a half years.love Eve
Hi Eve and Slim,
This is the first time I have used private messaging on here, wasn't sure how it works as am quite computer phobic, it is quite easy though. Just went in to my own profile and saw the one I sent to you, having now looked there is a box which will show me when you reply to me, will be interesting to see if I am somehow sent message to tell me I have message waiting to be read!!
So sorry to hear Slim's news, this is what I dread and crosses my mind almost daily,especially if I have new ache or pain and last night my husband admitted to me that he thinks like this too but he doesn't say much and only admitted this when I pushed him to tell me!!
I see from here that Jet has had two SCT and is now almost 1 year clear after her second one, so there is still hope after the return of the myeloma.
Love Babs
Dear Eve
I am so sorry that this damn disease has reared it's ugly head again. I know you are a very strong woman and very knowledgeable. You and Slim have been through a very rough time. I don't know what to say to you Eve but my thoughts are with you and Slim and I will pray that there is a treatment for him.
Love Jean xx
Eve and slim,
This is rubbish and there is no getting away from that! I hope that they can whack it into touch as soon as possible!!!! You are both strong and supportive of each other, and us on this damn site, so it's our turn to support you guys 🙂
Thinking of you and let's hope it's a blip!
Vicki and Colin x
Hi Baba and Jean
We have known for a month now,it is just getting you head round it and getting over the disappointment ,we have both picked are selfs up again,plans changed and ready for the next round,stopped feeling sorry for myself,given myself a kick.(and that's just me) .Slim deals with it differently than me.
Selling large Motorhome,anyone interested!!!,had some wonderful times travelling ,but that's another story.
Babs see you on the 12 you have the appointment. Before us,unable to reply as need you to put e mail on profile,only allowed to go through Myeloma Site,but I am on Facebook,Tom and Jean and a few more on there.
Jet had another SCT because age!!!,Slim will not get offered one plus septic pneumonia damaged lungs,lucky to get first one.
Jean I know I keep telling you I will take my scrabble go,but my mind is not in the right place I have been using I Pad for some time,as have had a bad leg plus frozen shoulder,and sitting for a long period at table is painful.it is getting much better after injection in the joint,so I still might beat you yet as you are going to be so knacked looking after Frank. Lol
I am feeling a lot better about the whole thing,just sharing it. We are not looking at it through rosé coloured glasses we both know roughly what might be on offer in the way of treatment which is Revidimide .unless some trial comes up.we do realise you only roughly get half the time again,So when the experts get together and make a decision amongst themselves,that we do not really have a say in,until they tell us what's on offer,we are left guessing.
Hope I do not sound to bitter. Thanks for your kind thoughts Love Eve
Oh Eve and Slim
So sorry to hear this news, Myeloma really is a horrid illness – every story is so very different! I wish you both well. Take care.
Love Ann and Pete
xx
Hi Eve and Slim
I'm so sorry its reared its ugly head so soon for you. Eve, I don't know you of course, but from all of your comments on here, I imagine you to be made of strong stuff, you will cope because you just have to.
I know things are very individual, but if Revlimid is to be the next treatment , my Mum didn't have many side effects.
Look after yourselves
Love Ali x
Hey you two
Hey am real sorry its came back on you Slim I do feel for you both.
As for feeling Sorry for yourself? well you have every right Eve to feel like that, but am sure you will soon turn round and face it head on and you know you have a few big shoulders on here that is more than willing to help you give that MM a shove.
If you are selling your Motorhome take some photo's and put it on Facebook its worth a go:-)
Good Luck to you Both and hope you soon find out what and when Slim will be getting.
Stay Strong
Love Tom Onwards and Upwards xxx
Hi Eve,
Ah, I know many of you on here have much more experienced of myeloma than me, I was just trying to be positive for you and slim but now understand regarding the 2nd SCT.
I am pleased that just sharing this has helped, the support found here is just brilliant.
My thoughts are with both Slim and you,
Love Babs
Dear Eve
It's such a tough journey isn't it? You try so hard to keep optimistic and forward looking then it gets up again and bites you on the bum. I really do feel for you and Slim.
Thinking of you, keep in touch
Love Helen
Thanks again everyone
It is nice to have your best wishers.
Tom sold the van today,exchanged it for a smaller one,which will be easier for me,cost me money,but it will be easier to take out for weekends plus the odd weeks ,the other one was made for staying away for long periods, the last thing I want is for Slim to be stuck in doors ,he really is an out door person. So now it is full speed ahead,having breaks between what ever treatment they decide.
Feels better just making decision in stead of waiting around ,although we only had six months,we went to France,went on a cruise and spent 5 weeks in New Zealand, and we don,t intend to sit and wait for the hard times .
I now know how it feels posting bad news,you feel no one needs t know about failing,because we try to support all the people going through treatment and SCT,so it's not good news when it fails.
Helen and Slim started the same time,but Helen got remission after 1st treatment , and they are both out of remission ,so it does seem hard.
Eve
Hi Helen
Just thinking about you,it's worst second time round.
First time you are just grateful you at last know what is wrong,second time round used up CDT. Plus Velcade ,the options reduced,It is a shock,we thought Slim might get a couple of years,but 10percent in 6 months,that's not a bit in the bum,it's a shark attack.
As I said earlier ,making plans,we are going to make ever day count,and if Slim is kept waiting for hours before he has his treatment,they will have to deal with me,this time I intend to keep a dairy. It started with his full body scan,takes a hour with parking just to get there,after sitting there was told although we had an appointment ,they could not do it,we had to come back the next day !!!.some how after me wanting to know who made a mistake they managed to do it.
This is what I am dreading most of all.
How are you finding the Velcade ,Slim found it easier than CDT. Love Eve
Hi Eve
I've not started any on any more treatment yet, but I had the long discussion about the options available and it will be velcade and possibly a trial which is coming up with velcade and something else, I don't even know what it is called, then second SCT with the hope I will get 2-3 more years!….he said!! . I was a bit shell shocked really. It was worse than the first time….my mind set was that I thought I'd be one of those people who would get 10 years easy! I feel so well it's horrible to think I have to go through it all over again, and now I know what I'm in for!
I'm seriously wondering about work now but can't bear to give up yet, maybe when I know the bmb results in a couple of weeks I'll have a rethink. Suddenly I find there are things I really want to do while I can.
I have it easier than some, I can just nip down the road to the hospital so no great journey for me not like yourselves who have to make a day trip of it. I think it's a good idea to keep a diary of how it goes, I did last time but gave up after SCT…. Wish I'd kept it going really but… There… The road is paved etc
I'm trying very hard to stay positive but it's difficult at the minute as indeed it must be for you and many others in the same boat, anyway, work tomorrow so I must go
Love Helen
Hi Eve & Slim
Sorry to read your news. I did see you'd posted it in another tread before. It's such a shame that Slim didn't get a decent remission out of the SCT especially after the fight he had to go through to get to SCT in the first place. As you say you did cram a lot into the 6 months whilst Slim was free of MM. Hopefully his next course of treatment will hammer the myeloma back into remission and you will traveling the world again.
Every day is a gift
Andy xx
Dear Eve Im so sorry to read about Slims relapse its so hard to watch someone you love suffer but I know from all the kindest and support youve given me that you will get through this blip. A more positive note Revlimid worked well for Michael he had total remission for a good couple of years with little or no side effects and that was without any drug combinations. So onwards and upwards as Tom would say
Much love
Sue x
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