[VickiParticipant]

Hi all,

Vicki here. We went to see the consultant today expecting cols blood counts to be up and starting the next cycle of treatment ( no paraprotein left but last reading 850 light chains). We were really shocked when she said that his bloods had not returned to above 1 (still 0.54) so they were stopping treatment for 4-6 weeks and going for SCT now!. We were gobsmacked. Next thing was we need to do a bone marrow aspirate 🙁 . That was done and then we had a call tonight to say that it needs to be done again as the sample wasn't great……

Anyway we are now a bit worried about the SCT following the description of the first week post high dose therapy. Our consultant made it sound like a living hell,even allowing for the worse case scenario. We were also surprised at the 1-5percent don't make it rate. It's made us doubt a little bit about whether to do SCT. Did any of you that have had one have these thoughts too. How long did the horrible bits last. Are you that have had it done, glad you did. What are the options if you don't go for SCT ? We haven't seen the special nurse yet so we can ask all these questions but it's good to hear it from those that have been there! 🙂
perhaps these doubts will go away once we get our heads around it……
Vicki and Colin x

[tomParticipant]

Hi Vicky and Colin

Wow what a rush now?

Well to answer one of your Q's I had my SCT in dec 2009 yes it was hard but and this I mean if it fails would I do it again Too true I would 😀 yes its hard yes its a long time in the "Getting Better" Dept but well well worth it 😎 because I sit here now two years and six months down the line in remission and taking NO drugs and feeling Pretty Normal 😀 .

I wont ever be as fit as i was pre MM but I have it and will make the most of what I can do.

I have to admit it scared me some what but not as much as leaving the hospital after my SCT (day 16) knowing that it was Just I and my Young Bride at home, No Consultan/Dr nor Nurse :-S and that scared the hell out of me.

As for me I would get my head around it and if needed would do the same again 😎

All the best with it all

Love and Hugs
Tom "Onwards and Upwards" xx

[VickiParticipant]

Tom,

Thanks so much:-) , positive as ever. Thanks for the positive, honest thoughts. Glad to hear things are going so well,enjoy your weekend, even if the weathers rubbish. Good excuse for some good hearty food and a couple of glasses of the red stuff……or vodka for you I seem to recall from your previous posts.?

Thanks for the good wishes, I'm sure there will be more posts soon!!!:-)

Vicki and Colin x

[tomParticipant]

Hi you two

Your more than welcome I and Elaine(the young bride) knows all too well how bad BUT how good its been for me, and as for the "Red Stufff" yep am partial to that its good for the MM 😀 and yes the Vodka is even Better for the MM 😎 drink too much and you forget you have it Lol.

Keep strong and live life with a smile

Love and Hugs

Tom "Onwards and Upwards" xxx

[DebsParticipant]

Hi there

I'm not surprised that you're nervous, but hopefully we can all help to relieve that a bit!

Firstly, my consultant said that the % is more like under 1% and that is the case with most hospital procedures that are of significance.

I had my SCT a year ago, and Tom is right, it isn't nice,but you get over it…it's a bit like labour! They're sort of right that in that first week as a patient, you don't really want to do anything at all except for sleep and get over the side-effects. But then, it is an upward route normally. So long as Colin takes it easy and doesn't overdo things too soon, he'll build up each day. I reckon I am now at least at 95% of where I was a year ago so yes I would do it again. A tip now, is for him to focus on how much he improves each day!!

There are lots of posts on here which give advice for the SCT to make it a little easier

Hope the red wine is going down well! 😉

Take care
Debs x

[AndySParticipant]

Hi Vicky and Colin,

I had my STC last Autumn and with the harvesting and all the other mucking about involved, it is a lot of effort for everyone involved. I spent a total of 7 days as an in-patient (N&N try to get you home as much as they can). Yes, it is quite hard and uncomfortable, they are after all filling you up with some pretty strong stuff, but you will come through it, the neutrophils will come back and you will feel better. And Better. And Better. I only realised after how ill I'd been for so long when I was able to do things I'd not even thought about doing for ages.

My STC journey ran into the buffers after 4 months, but that's just me and this mysterious,individual disease.

Based on my experience, would I recommend other to go for it? Yes without doubt. Most people get a good remission far longer than mine and feeling 35 again without drugs and all that it entails is priceless.

I hope that it all goes well for you. Stay positive. Think about the good times to come and the the sore mouth and bum will soon be put in their place.

Best wishes,
Andy

[eveParticipant]

Hi you two
I can only say take the chance you have been given,Slim and I were very unsure,one because his own consultant thought Slim had to much damage to his lungs.So at the end of the day it had to be Slims choice,I would never have forgiven myself if I pushed him,and he died.

He has now had his SCT,and he said it was not as bad as he thought!!!!!,at the moment he is saying never again,but doesn,t every woman say that when she has a baby.Am I wrong to compare it!!!!!!!

If it works it will buy Slim double the time,I thought I nearly lost him last year,and I can only tell you,this year has been terribly hard,but I would not have missed it for one minute.I value every minute I have left with Slim.Love Eve

[HelenParticipant]

Hi Vicki
SCT is straightforward for some and difficult for others, mine was a long hard road and I thought that I'd never feel better. But 10 months later I'm ok and I'd do it again if I thought it would buy more time. I did get very fed up with all the fussing and tended to growl at anyone who was only trying to help, or was worried about me. After the high dose chemo you get about 4-5 days feeling quite reasonable but tired then about 7-10 days feeling very grim, then in my case it was just very slow recovery from sct and additional sepsis. The only thing Colin really needs to do in those few bad days is to drink lots and sleep lots. It's about enduring the time. It is hard for partners and families to watch as there is nothing they can do to help make it better, and when they visit I don't suppose we are very pleasant or communicative. I certainly didn't want many visitors around to witness my sudden dashes to the loo or throw up! You'd be amazed at how insensitive some people were!!!:-/
It will be ok, but everyone is different and it's not predictable as to how he will be.
Just keep asking the questions as you think of them
Love Helen

[GillParticipant]

Hi Vicki

Stephen had 2 SCTs the first gave him 16 months. He sailed through it and felt quite guilty that others seemed to suffer. His second failed and he then was sorry that he had "wasted" some of the time he had left by being in hospital and feeling a bit weak. Hindsight is a wonderful thing:-| Obviously if the second SCT had worked he would have thought it was worth every minute.

I know of some people that have obtained remission for years and others, like Stephen, that don't get that long. The choice has to be Colin's

This is such an individual and unusual cancer that it seems nobody can predict how a person will respond. I do know that some have felt bloody aweful during SCT and others (like Stephen) just can't eat, feel grotty and poo a great deal. (gentle baby wipes for the bum is the order of the day:-)

I wish you the very best of luck in whatever road that Colin takes. Do keep in touch and let us know how it goes.

Much love from Gill xxx

[VickiParticipant]

Hi Andy,debs,helen, gill,eve,

Thanks very much for your positive responses and honest comments. Its so good to hear that it made a difference. I can tell that it is very much on colins mind at the minute. I am sure we will go over this a lot in the next few weeks. I have shared your positive thoughts with him and he appreciates it greatly. We will see what the next few weeks brings.

Helen, I read you have gone for the blonde look, I did share that with Colin, but that didn't seem an option for him lol!

Sometimes this seems like a crappy situation and I've almost shattered myself with worry about the induction treatment! Still seems that was the walk in the park bit ha ha!

Will keep in touch when we know whats happening!thanks again. And good luck with slims recovery eve.
🙂 🙂

Vicki and Colin

[tomParticipant]

Hi Vicky and Colin

Well I see as normal you have had some great and honest answers 😀

Just to add a little bit more The treatment I went through from start to this day was for me "Pain Free" except when I was having the growth injections I had pain in my rib cage and that was intermittent for I think four days.

And Like Helen said around the 7/10 day well I was asleep for nearly all that Lol.

Love to you Both and am sure when Colin reads these great honest posts it will make you both feel better.

Tom "Onwards and Upwards" xx

[VickiParticipant]

Tom and all

Thanks so much. He has read these posts and I think it has helped. He was actually singing in the bathroom! , not a good sound LOL, but it's nice to hear him sounding a bit happy.

I can t tell you have much this is helping both of us. Stephen has also done some brilliant posts re harvest etc and we will reply to him too x

Vicki and Colin x

[DaiCroParticipant]

Hi Vicki,

I am in Tom's school… it is hard and at times unpleasant but ultimately it is worth it.8-)

I only got enough Stem Cells for one SCT and it relapsed after 10 months… we had a prognosis of 3 to 5 years after doing so well on CDT (from a very tenuous starting point of 3,500 Kappa Light Chains to full remission in 4 Cycles) but unfortunately it wasn't to be. :-/

My SCT was draining… I found it extremely hard to maintain any sort of appetite and just as hard to force myself to take on fluids (I really intended to but my intake and urine was measured and so I ended up with a fluids drip as a constant companion for the best part of 10 days). My wife caught a stinker of a cold and so I had no visitors for 2 weeks but in truth I was glad of that.

The thing is I was rock bottom physically, completely drained of energy, with no appetite and having physical difficulty drinking… but I wasn't in pain… I didn't feel ill as such… just empty and lifeless… like a cardboard cutout of my former self. I was literally waiting for my system to reboot – which is exactly what a SCT does to your system… and in the meantime I just had to get through each day with as much good grace as I could muster.

Having free TV, Radio & internet access, plus my mobile phone, meant that I could stay in contact with the outside world… although, in truth, I wasn't very communicative beyond blogs to this forum and phone calls to my wife and children.

But it passed… with no more than a couple of days with a slightly sore throat and a few days (2 or 3) where the runs became a very interesting companion…

Would I do it again for just 10 months remission (of which at least 6 were recovery)? Too damn right I would.;-)

No, the whole SCT process is most unpleasant… but not half as bad as its press.:-)

Dai.

[VickiParticipant]

Hello Dai,

Thanks so much for this very informative and detailed post. Considering we knew SCT was the next stage it has certainly shaken us up over the last couple of days and colin seems to be having some peaks and troughs of nerves. I'm not sure what I feel like. It is so helpful to have contact with someone like you because not only have you 'been there',but also seems to have a wealth of knowledge about up coming drugs. Any chance they can think of the miracle cure injection in the next 6 weeks? 🙂

Sorry about the spelling, but this drug carfliblomib, if this is authorised do you know if that would involve large doses of chemo and what other drugs would need to be taken with it. Just thinking ahead just in case!

Dai I'm sorry your SCT remission was only the 10 months, and the worry is always a lot to go through for that short time, however treatments seem to be improving all the time. Everyone's posts have helped me in any case. Thanks for taking the time out to explain your experience. Hope you keep well 🙂

Vicki and Colin.

[DaiCroParticipant]

Hi Vicky,

You have to remember that those of us who offer advice here do so with all the benefits of experience. We are looking back and recalling what it was like for us… we recall the procedures and the side-effects, and the processes… but we rarely tell of how we felt at the time… mainly because our fears and apprehensions have been replaced by the realities of the experience and its outcomes.:-)

I felt just as nervous as Colin… perhaps more, perhaps slightly less… but something very similar for sure. Two years down the line and you and Colin will be as familiar with all the jargon and the ins and outs of different processes and procedures as anyone… at the moment you are caught up in a fast moving world of treatment, with little time to take stock and develop an interest in the wider world of MM.:-|

That time will come… but for now you are both trying to cope after your own fashions… both facing up to your fears and your hopes… some spoken, some not… some put to the back of your mind or beyond to be confronted another day… perhaps never… for now It doesn't matter.:-)

My mantra was 'Whatever It Takes'. I developed my mantra as a strong staff of positivity which I used alternatively to lean upon or beat down a path when negativity raised its head.

I was scared… MM is a scary disease… I was scared like I used to be scared of the dark… there were so many imponderables… so many uncertainties… words, medical phrases and terminology surrounding MM and its processes and procedures. I was scared of not understanding what to expect.. especially when we got home from a consultation and Janet and I would have different understandings of what was said or what was going to happen next. We have all been there or thereabouts Vicky.;-)

By the time I went in for my SCT I was apprehensive… no… more than that… I was still scared… but I wasn't frightened. I made sure that I had a full understanding of the whole SCT process… from the Mephalan and the iced lollies to the full proceedings of the day I got to go home. I had wonderful tutors in Gill & Stephen who wrote a comprehensive and very human account of Stephen's experience of his SCT a few months before mine. (Gill might be able to bump up their blog – its well worth reading). 😎

Being scared is Okay, its human, its normal and to be expected… but there is no need to be frightened… we who are ahead of you are here to offer advices and answer queries… there is absolutely no need to be ignorant of the process… if you are unsure, ask… and believe me there is no such thing a a silly question… sometimes they are the important bits.:-D

Step by step, take it easy and slow and while we cannot answer or advise on purely medical questions we can cover the experiential matters of every process and procedure related to Myeloma's treatment.

Regards

Dai.

[Author]

Posts