[MariParticipant]

Hi everyone,

I am sorry I have not been around for a while. Steve has been pretty poorly for a while and I have not been coming to the site. I have missed you all and I hope things have been ok for you all.

I am really coming on to speak to you about second Stem cell transplants. Since Steve has his last September his health has been really poor and I just want to warn any of you to think very carefully before having one. Everyone that I know who has had one, Gordon, Stephen, Keith, and now Steve have found that the procedure is so intense that it knocks their health back so much, without giving much in the way of remission.

Just a quick couple of words about what Steve has been through, I dont really want to come here to moan.

He recovered quite well to start with and returned to work in January. He found he was getting breathless on the walk from the station to the office. We put it down to low Hb and thought it would resolve. By February this was getting worse and he was getting chest pain as well. In mid March he was taken to hospital by ambulance with chest pains and ended up with an angiogram for suspected angina. We thought that finally the doctors had found the cause and he could start his recovery. The angiogram showed no problems and he was sent home just before the Easter weekend, still in pain but with no sign of any cure for his ailments.

We realised that the pain was related to eating. He was now in such pain after food that he stopped eating. He was also feeling increasingly breathless and struggled to find any comfort. An endoscopy confirmed that he had an imflammed oesophagus and he was diagnosed with Gastric oesophageal reflux disorder. Not related to myeloma or the SCT at all as far as we could see, just plain bad luck! He was sleeping in a chair downstairs. After six weeks the pain in his chest started to subside as the treatment worked, but he was increasingly breathless and was house bound, barely managing to go from one room to another. He finally collapsed two weeks ago last Monday and was admitted to hospital again, unable to breathe.

He was diagnosed with pnuemonia and subsequently a candida infection of the lungs. He was on oxygen and IV antibiotics and antifungals. His Hb was right down at 74. After a week in hospital his feet and legs swelled up hugely with water retention and it was noticed that his heart was failing. I thought I was going to lose him, but he came home on Wednesday with a sack full of drugs in a very weak state, platelets 49, Hb 90 and paraproteins 16. He had precious little remission and needs to start the next stage of treatment, Revlamid, but his body is not strong enough to take it just yet.

Despite the myeloma he was a fit man before his second transplant, and now his health is broken and he seems so much older than his 56 years having gone through hell in the last six months. I am sorry that this is such s long drawn out post.

Please think very carefully before considering a second stem cell transplant.

Love to you all, Mari xxx

[MariParticipant]

I just want to stress that I am talking about second transplants, I dont want this to put anyone off a first SCT. They are nasty but can give good long treatment free remission giving a wondeful time of normality to so many people living with MM

[eveParticipant]

Hi Mari

So good to hear from you although the news is not good,I have been wondering how things were going.Try not to kick yourself to much Mari,we all can only do are best,Steve is just like the rest of us trying to buy time,with hindsight is a wonderful thing,there is no magic Wand,it works for some and not others.

Steve,s body has taken a lot,I remember Slim when he came out of hospital,and they said they wanted treatment to start the following week,but he did pick up took a long time and lots of damage caused by Pnuemonia and blood clots,its left a weakness in his lungs,but he is still alive. Saying that I have just come home early ,thought a break before next round,and had to take him to doctors,doing my best to keep him out of hospital,chest infection,so started Claxane injections early with new antibiotics ,plus starts Dex tomorrow ready for starting Revidimide next week.

How are you keeping Mari still working hard and juggling your life????

Keep in touch Mari,it will take time to build Steve up,small amounts of food little and often,some people on here have been on Revidimide for a long time,Slim will have the course and if it works will stay on it as maintenance until it stops working,I am trying to be as positive as I can,so now exactly how you feel,but you can only do your best it is hard when you see such a drastic change,you may never get back the man Steve was,but you can enjoy the time you have. Love Eve

[MariParticipant]

Hi Eve,

It sounds as if you and Slim have been through the mill. I am so sorry to hear that. Last time I heard he was recovering from SCT and were off to NZ. I hope you had a good time.

I agree with everything you say, everything looks different with hindsight, but I wrote this to help other people approaching a second transplant.

I am still working, we need the money! But it also helps me keep going. We live close to where I work so i can be on hand if Steve needs me. I am a teacher and it will be summer holidays soon. We are hoping we can go away for a few days. Some sun and relaxation will do him the world of good.

I hope you are looking after yourself and that Slim will feel better soon.

Much love, Mari xxx

[eveParticipant]

Hi Mari

Slim only got 6 months remission after the 100 day BMB,because it no longer shows,he has to have BMB,they will be monitoring the Myeloma every 2 months with Slim having a BMB.
It does not take much working out,None of the treatments Slim had worked,trying to be positive about Revidimide ,but when Slim had Thalidomide ,in the 6 cycles it actually increased to 80 percent in bone marrow.Velcade worked until he stopped using it,but that was also considered a failed drug.

It's hard times at the moment!!?, Love Eve

[MariParticipant]

You are having it tough, hold on Eve, as you say he is still alive and where there is life there is hope.

I hope you are both enjoying this sunshine while it lasts. I have just had an email at work from Steve telling me how he has had a glass of rose in the sun, with his lunch!

Much love, Mari xx

[eveParticipant]

Hi Mari

Just unpacked the Motorhome,bulging with wine,but poor Slim has not enjoyed a drink for 21/2 years,tries mine every now and then,but does not enjoy the taste,have bought some beautiful wines back,filled the wine rack:-) ,but I do like company when enjoying my cheese and wine!!!
If Steve is enjoying his wine it must be getting better,I often think its harder on carers second time round,when they start the first journey,its a learning curve,and you go with the ups and downs,but facing it all over again with knowing all the pit falls is very hard,the only good hing about it is,because Slim went through the mill,I know all the pit falls,and on the plus side,I will make sure Slim spends as little time as possible in hospitals and with the new Motorhome which is smaller we can have lots of time away,with all the comforts of home.
I keep saying summer is round the corner,but France is flooded all river banks are breaking,watched French open could not believe sunshine in Paris,those poor French farmers will be asking for more money soon:-| love Eve

[BADGERParticipant]

Hi Mari

so sorry to hear about Steve it must be such a worry for you both I read a lot about STC and decided to take my chances with the new drugs CDT first which gave me just over three and a half years remission now on Velcade after 5 cycycles now O paraprotiens hoping for a long break again I have read in the US they are moving away from STC dont whats right but food for thought
Regards Jo

[BADGERParticipant]

Hi Eve

Sorry to hear Slim has to go on revlimid if it suits him it should be good there is a lady in my Myeloma group who has been 5 years clear on it she had to fight to get it it the first place Our MP Grant Schapps managed to secure oit for her luckly it on general perscription now I do hope you can use your motor home this summer even if its just in the Uk
Hope you both keep well
Regards Jo x

[MariParticipant]

Hi Jo,

so pleased to hear you are doing so well, long may it continue.

I believe a first SCT can be a wonderful chance for a good remission.

It's a second SCT I am concerned with. After a relapse the body and bone marrow is much weaker and and SCT can be a very difficult thing for the body to cope with.

It is a very personal decision and I know that there is some discussion about the efficacy of SCT compared to the new drugs there are today.

Much love Mari xx

[PerkymiteParticipant]

I was so sorry to read your post Mari, when I read about the pain and suffering people like your Steve are going through I do feel I have been so lucky. It is not easy for anyone with Myeloma, I have had and continue to get my problems but some just get a rougher ride than others. Just following life's pattern I suppose!

I wish Steve all the best of luck and a speedy recovery.

Kindest regards – vasbyte

David

[MariParticipant]

Dear David,

Thank you so much for your good wishes, it means a great deal. We always used to feel blessed because despite the illness Stephen managed to maintain a reasonably good level of fitness and strength. He has declined seriously since the Second SCT. That is why I posted and why I feel so strongly that it is such a fierce treatment that it can knock the body badly and it is so hard to recover, especially second time around when the disease and previous treatment have already taken its toll.

However I am cheered today, by everyones support, I have missed you all, and by a text I have just recieved which tells me that he is having his best day for months, and he is enjoying a coffee in the sunshine, so where there is life there is hope.

I have taken to using a motto in these tough times. It comes from Julian of Norwich, ( a woman, although that makes no difference)

[i]All will be well and all will be well, and all manner of thing will be well.[/i]

Amazing how that has helped me even in the darkest times.

Have a lovely day everyone,

Much love, Mari xx

[VickiParticipant]

Hi Mari and Steve,

So sorry to hear your troubles both…..it sounds awful and this is a useful insight into sct second time round. It must be so sorry for you both. I smiled when you mentioned the email about Steve and wine…..that's my barometer when I know Colin is ok. When he is feeling well ish he has wine, when he doesn't he doesn't if that makes sense, this fatigue is still with us but hopefully things are still ok but he does get very tired……first sct has been bad enough!

The gastric issue…..Colin has also had that pain and we called the hospital, went in once and Gp a second time, they gave his operamazol for gastric and this peptic liquid, which seems to have done the trick. I'm sorry to hear of Stevens health as the last time I remebr your posting Steven had cooked Sunday lunch and I alway use this as an encouragement in my head when Colin isn't do good.

I hope you both get a break away, but where else do we need to be when our uk weather is this good at the moment 🙂

With best wishes and hopes for a better time of it over the next few months 🙂

Vicki and Colin xx

[PerkymiteParticipant]

I use Vasbyte (grit your teeth and Bl++dy well go for it :'-( ) Mari ever since my SA relatives introduced me too the word, when I am in trouble or or pain I use it, in my mind, a lot.

I was told right from the start that I would only get one SCT (70 years) but as it happened I only harvested enough for one. A blessing in disguise who knows!

Got to go going to play World of Tanks with my son and Grandson:-D

Kindest regards – [u][b]VASBYTE[/b][/u]
David

[mhnevillParticipant]

Hi Mari and Steve.

So sorry that Steve's second SCT didn't work. Do hope Revlamid does the business when he gets on it. Don't despair, there are lots more options coming available.

Thank you for your honest sharing. Like Jo I didn't go down the SCT route.

Very best wishes.

Mavis

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