[CatlynParticipant]

Hi everyone
Its been a while since I last posted as had terrible trouble getting Internet(a battle between Sky & BT but thats another story).Husband Pete was diagnosed with myeloma November 2011,and after five months on Thalidomide and four months on Velcade has been told he is now ready for stem cell transplant.He has his Cyclophosphamide on Sept.10th with harvesting the week after and then transplant in October(fingers crossed)
Have now managed to catch up with most of the posts and see there are quite a few people who have had or are due to have this too.
I feel a bit stupid now as Pete was due for this last Easter but because he plateaued on Thalidomide it has take a bit longer. We had felt quite optimistic then but now things are moving next week we feel really nervous and apprehensive about it all.At least we know there is light at the end of the tunnel especially when I think of Eve and Slim(what wonderful news).
I have also read Ali's and Vicki's posts which have been so helpful too as well as everyone else. Hope I havent rattled on too much.
Take care. Love Lyn.

[VickiParticipant]

Hi lyn,

We can really sympathise with you and the timescales, and now getting close becoming nervous…….we are, but Colin with mm is less likely to admit that than me! It really is a roller coaster of what happens next. Last we Colin had his cyclopriming. At first they thought his blood count was too low so may not be able to do it, upset about that….then ok so happy, then he's unwell when having it done, upset about that, then fluids of boards hes well again! It was an up and down experience.

Tomorrow we are going to Bristol to have a second try at harvest…..I'm really nervous tonight. The only saving grace is that we are closer to SCT if it works, and boy am I nervous about that! It's a bitter sweet thing, wanting to get it done but scared about what to go through.

Will keep you posted and hope all goes well for you guys. By the way Colin was diagnosed in October 2011 so about the same time as your husband.

Colin and Vicki x

[CatlynParticipant]

Hi Vicki,
Thanks so much for replying to our post. Its nice to know that we are not alone in experiencing these anxieties and all the ups and downs that this mm slings at us.
Fingers,toes and anything else will be crossed for Colin and yourself tomorrow at Bristol. You both deserve this to go right and I am sure it will.I too feel its a rollercoaster but when your on it your heart wants you to get off but your head says come on this is the breakthrough we are looking for and the chance to live life again and do all those things you want to do.
Please keep us posted and we will both be thinking of you guys tomorrow.
Lyn and Pete x

[AliParticipant]

Hi Lyn

My Mum was also diagnosed last November (11.11.11 appt time 11.10am) will not forget that date in a hurry 🙁

You have not rattled on….thats what we are here for.

I think we all feel the same re SCT, its scary stuff, but then when you read things like Eves post you know its got to be worth it in the long run.

Keep in touch

Ali xx

[CatlynParticipant]

Hi Ali
Thanks so much for your support.Hope Mum is gaining strength after her SCT and is feeling like doing more. What a date of diagnosis! Petes was 5th November so Guy Fawkes is a date we wont forget.
I will keep in touch. Please continue to post and let us know how Mum and yourself are doing.
Lyn xx

[jmsmythParticipant]

Hi All

Frank is due (all things going well) for SCTin the new year. I went to a meeting last week on SCT and to be truthful at the time I was sorry that I went. I felt i got more info from the forum and in a more encouraging way. The one thing I did get out of it was, there was a man who had a SCT 3 years ago and told us what it was like – it scared the life out of me but he must have seen the look on my face as he looked directly at me and said " you want to ask me was it worth it and would I puit myself through it again – IN A HEARTBEAT ". I spoke to him afterwards and he reassured me that although it was tough it was worth it.

My very best wishes to,you all
Love Jean x

[MicheleParticipant]

Hi Lyn

Your husband Pete is entering territory that I was in last December!

The only advice that I can give is; take each procedure a step at a time. The initial priming and run up to harvesting as one, harvesting as the second and the SCT as the third. 🙂

The day Pete goes in to have the chemo. infusion will no doubt be a long, boring, tiring one. He'll receive lots of infusions through the day. I was there for about 9 hours altogether.
I took my knitting in which helped me occupy the time but was a bit awkward having pipes attached to one arm!

When I came home that evening I was exhausted and unfortunately was sick 5 times in the next 30 hours.

The GCSF injections to stimulate the new stem-cells are no problem and the bone pain he'll experience isn't very nice but is to be seen as a good sign. It means the injections are working and stem-cells will be pouring into his bloodstream. 🙂

Let us know how he gets on with the first step, and don't forget that book!!!

[tomParticipant]

Hi Lyn and Pete

Trust me you two the light is at the end of the tunnel I had my SCT in December 09 not a good month even if i did miss Santa ha ha, but it was well worth it.:-D

Would I do it again No problems as it has made me fit (ish) and in remission and drug free in a couple of years still down the line 😎
Just take one day at a time and rest when your body tells you (that info was for Pete and You as Partners often forget they need rest also)

Love Tom "Onwards and Upwards" xx

[CatlynParticipant]

Hi Jean
I really hope things will work out well for Frank and that he will get his SCT in the New Year. I can only imagine your face when that man was describing his experience!
The lovely people on the forum seem to give you all the info you need. They tell it like it is but give you hope and encouragement as well.
I will continue to post as it is making me feel better about hubbie Pete next week and also hope that I will in turn be able to offer advice and hope to those people following on behind.
Love Lyn & Petexx

[jmsmythParticipant]

Thanks Lynn will follow your posts with interest. Will have everything crossed for Pete in October. Best wishes to you both
Love Jean x

[CatlynParticipant]

Hi Michelle

Thanks so much for your reply. I will take your good advice and take each step at a time. My knitting is pretty awful but I will certainly take a very large book!!!
I will let you know how we get on next week.Hope things are going well for you and you get a really, really long remission.
Best wishes Lynx

[CatlynParticipant]

Hi there Tom,
Your encouragement was much appreciated by Pete and myself.You have done amazingly well and I hope it will continue for many, many years to come.

I think Pete worries that its such a big thing to go through but knowing that you are a couple of years post SCT and still smiling has made us both feel better.
Love Lynx

[tomParticipant]

Hi Lyn and Pete

Your More than welcome, but bare in mind its not a walk in the park but it is "Paine Free" cept having the GCSF Injections and the BMB and I put the rest down to "Just Stuff" its a doable and as I said I would go through it all again 😎

If you need any more info ask away I aint shy 😉

Love Tom "Onwards and Upwards" xx

[jackspratParticipant]

Hello Catlyn

My name is Jacqui and I am almost 4 months post SCT.

A bit of history :- I was diagnosed in November 2011 aged 51.

Following surgery to fix a lesion in my right femur which was picked up on diagnosis of MM, I started on CTD. 3 cycles of treatment resulted in 0 detectable paraprotein. I then had one more cycle until end of April and then went on to have my SCT on May 18th.

Ok, so the SCT was challenging but if you know what to expect then you can reason with it a little and take comfort in the knowledge that the scary bits are normal, and most importantly, they will go. As you are the carer I would say to you that I could not have managed if it wasn't for my ever so patient and caring husband. Even though a lot of the time i didn't have the energy to look at him let alone talk, I needed him with me and he sat there for hours. Poor thing must have been so bored.

Now less than 4 months on it seems like a distant dream I am still in CR with no detectable PP and I started back at work yesterday (albeit on reduced hours).I feel really good and feel as though I have my own body back without any gremlins from drugs. Just a few aches and pains but nothing that is too troublesome at all. In fact I am not even taking any pain relief.

I hope this helps in some way to get to grips with what to expect but please feel free to ask more detailed questions if you feel the need.

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