[hikernickParticipant]

Hi, Nick here.

Diagnosed in June – initially hoped it would just be MGUS, but that soon escalated – smouldering between then and October, started CDT on 25th October, so on my 3rd cycle at the moment. Guess I’ll be in for SCT some time between Feb and April if I respond well (I’m 56).

Not much else to say really, look forward to reading more of the forum and getting to know you all.

Cheers

Looks like this forum doesn’t have signatures, so for one time only, here’s a link to my treatment blog:

http://chemodiary.wordpress.com/

• This topic was modified 10 years, 11 months ago by  hikernick.

[mhnevillParticipant]

Hi Nick

Just wanted to pop in and welcome you to the a Forum – sorry you have had to join us! Sorry you progressed to MM so quickly. How did you get diagnosed?

I just hope you do as well on CDT as I did. After six regimes I have now been in remission since summer 2012. Of my own choice I have not gone down the route of SCT. I am 68 years. I wish you well with all your treatments.

Best wishes.

Mavis

[hikernickParticipant]

Thanks for the welcome, Mavis. What made you decide against SCT – was it the high intensity chemo?

I’m not sure how long I could expect to stay stable after just the CDT – my paraprotein levels were shooting up before I started on the chemo – around 3 per month. When it got to 31 the decision was taken out of my hands, more or less.

I was diagnosed by chance, from a routine blood test for gout (the blog explains the background).

Nick

[CarolsymonsParticipant]

Hi Nick
I only managed 3 weeks of remission after CDT and have just had the high dose chemo (etoposide) and will be starting injections tonight for stem cell mobilisation. Transplant early January. So far so good, but side effects from the chemo will continue over the next few weeks.

Carol

[HarmonyParticipant]

Hi Nick,
This forum provides you with great support and reassurance. I was diagnosed with smouldering MM on 7th October and am so determined to pretend that things are okay that I use a pseudonym because then I can be 2 people- the pre-cancerous person that I was before diagnosis and the post-cancerous person who doesn’t understand where all this has come from. I hope that you respond well to your treatment.

[hikernickParticipant]

I’m hoping so too, Harmony. Stinks, doesn’t it! 🙁

[HelenRParticipant]

Welcome to Nick and all those of you I haven’t yet ‘met’ before!
Sorry you’re joining us but you’re not alone – there are a whole bunch of us here living this weird existence, although some like me only write from time to time. I had treatment last year and have enjoyed a good year this year in remission.
Helen

[VickiParticipant]

Hi nick

Welcome to the forum. My Larner Colin was diagnosed age 56, no interim just straight into mm. One back bone fracture which was amazing given the level of his light chains (31000) and pps were 17. It was a real shocker! Luckily no kidney damage. Colinnhad 7 cycles of revlimid, cyclophosmahide and dexamethasone. It was tough as he had lots of infections……we were at the hospital every month! He elected for sct( we had to have 3 goes to get the stem cells out and thankfully just got the 2 million required! He has been in remission since November 2012 and we are hoping and praying for much more. We were scared about all of the treatment as it all sounded daunting on the leaflets, however some how we got through it.

Good luck to you and your treatment. Hopefully you can sail through with a long long remission 🙂

Vicki and Colin xx

[hikernickParticipant]

Good luck to Colin, sounds like he has had a tough time but is in a good place now. Unfortunately I’m still learning the terminology, no idea what my light chains value is or even what pps is, but hopefully not something I need to worry about or they would have told me? What do I need to ask….?

SCT has been presented to me not exactly as a fait accompli, but a pretty certain next step. Interesting to read others saying they have “opted” one way or the other – what factors is the decision typically based on?

Thanks

Nick

[FrancesParticipant]

My smouldering mm has just started fizzing away so it looks like chemo in the new year for me. I’ve been told I’m too old for SCT – I am just 70, and until this thing hit me was in very good shape. Have others been told this? Is there any point in arguing with my haematologist’s decision? I know the nice long remissions result from STCs.
Good to hear about you, Nick, and good to read your treatment blog, which I shall study with great interest when the nasty stuff starts happening to me.

[CarolsymonsParticipant]

Hi Frances

I have met a 69 year old man who has just had his second transplant (he had 8 year’s remission from the first) so if you are healthy otherwise and feel you want a transplant i would recommend you get a second opinion. Is your haematologist a myeloma specialist?

Carol

[jmsmythParticipant]

Hi Frances

My husband had STC IN March this year and turnd 70 in April. Consultant told us that they don’t usually do SCT at 70 but she said that Frank was fit and healthy (!!!!!). He had heart and lung tests and all was ok. I think it depends on your fitness. There are quiet a few people on the forum who decided against SCT and are doing ok. I hope things work out for you

Jean

[teds31Participant]

Hi Nick, I cant help you much but it might be a good idea if you knew what “Light chains and Paraprotien” was there are several good leaflets that you can download from the Publications on this site, very helpful if you want to know more or want other people to understand. Ted

[hikernickParticipant]

Ah, thanks Ted. You’ll notice I didn’t say I don’t know what Light Chains are, just that I don’t know what my figures are – not quite the same thing. In fact I’m not sure if they’re being measured or not (Edit: from reading the leaflet on the test available here, I’m pretty sure they’re not, but also that it’s not so relevant for me anyway with my high paraprotein levels).

From your post I infer you think “pps” means paraprotein? In which case I’m OK, I know those figures (still awaiting the most recent one).

Cheers

Nick

 

• This reply was modified 10 years, 11 months ago by  hikernick.

[mhnevillParticipant]

Hi Nick

Sorry, I haven’t been on for a few days.

I decided not to press for SCT partly because of other health issues, but mainly because as there is no guarentee as to how long a remission it would buy, I didn’t want to spend precious months feeling so rotten for an unspecified gain. Also there are a new arsenal of drugs coming on stream so I have chosen to put my faith in them! HOWEVER, I’m sure I would have made a different decision if younger and fitter.

Like Ted has said, it does pay to learn as much as you can so you can be an active participant in your treatment programme.

Do have a good Christmas in spite of MM, it is one way of showing it who is boss!

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