[JetParticipant]

I'm amazed how low everyone else's PP figures are compared to mine. All well under 100 and seriously 1.8 must count as negligible!

To be honest, I'm more interested in how I feel on a day to day basis, e.g. with pain, energy and appetite. I just go with the flow when it comes to the medical/clinical aspects, trusting my doctors to lead the way and give me the information I need to make decisions.

However, as you've asked and as I now have some figures, I'll happily share if it's helpful:

4/02/11 (first diagnosed) Paraprotein level: 4309
7/03/11 (4 weeks into treatment): 129.6
That's a 97% reduction. There needs to be at least a 90% reduction to consider SCT, so this seems good to me. They are waiting for a sign of plateauing at a low level before putting me in for the procedure.
My most recent blood test was taken 04/04/11 – results won't be back for a couple of weeks yet.

Jet

[DebsParticipant]

Jet,
I think you might find your figures are your lightchains rather than your paraproteins if you're talking about hundreds and thousands.
Debs

[MinParticipant]

Jet,
I would confirm what Debs has said, you figures must be light chains. Ask you specialist if you have Bence Jones MM. Its a slightly different form of MM. Quite a few people including my husband have it. He went from over 8000 down to just indoor 2000 on his first packet of 25mg Revlamid. Second dose was reduced f to 15 due to low blood neutraphils. There is a negligible amount of paraproteins but they are insignificant and were only mentioned after his SCT. Amounting to about 2.
Even when he was counting 8000 he was feeling great and looking good but the underlying disease was still doing damage, particularly to his kidneys.
Min

[kaychappersParticipant]

Hi everyone
All the conversations about the PP levels have been very interesting for me today. I started with smouldering myeloma 2 years ago at 29 they steadily increased and before Christmas I was told I would need treatment. My PP level was 36, my bmb results increased from 13% to 43%, but it was my anaemia that the consultant was more concerned about. I have had 3 cycles of CTD and now I have plateaued at 23. They expect me to go to 20-22 when I go back in 3 weeks, when I will be radomised for Velcade of sct. I must admit seeing the very low PP I hope I will get velcade. Its so individual and I am learning that more and more on this site. Thank you.
Kay x

[DaiCroParticipant]

Hi Jet,

It would seem that you (and I) have Bence-Jones, light chain myeloma. My pp's have never been a factor but my light chains were 3.500 when I started CTD. I was down to negligible after 2 cycles and 0 after 4. I had to wait for 4 months for my SCT due to shy stem cells but I stayed at 0 from November 09 t0 January 11 (SCT in March 10). My reading was 22 in January, although my consultant didn't tell me but they had crept up to 94 at the end of March. Due to 2 upward readings my consultant has declared remission over and relapse into disease at that meeting. Depending on my next reading on April 27th (Janet's Birthday bless her) my next treatment (Velcade I believe) will start soon after. I have a cold/chill/manflu at the moment but apart from that I still feel as good as anytime since the end of my CTD treatment.

Hopefully Saturday will provide a lot more answers and indicators of and about all things MM. 🙂

Dai.

[PerkymiteParticipant]

Best of luck Dia. 🙂

Kindest Regards

David

[JetParticipant]

Ignore – mistake

[JetParticipant]

Aha!

Thanks to Dai, Debs and Min for clarification. To be honest, all these figures are a bit meaningless to me and I've decided not to get too bogged down with it all. When the consultants/nurses smile and say things are going in the right direction, then I smile too. That's good enough for me for now.

The rest is just a matter of managing my energy, pain and happiness quotient on a day-to-day basis and making the most of it when I feel good, which at the moment is most of the time. Just returned from a very chilled Tai Chi class, so in a very good space.

Not looking forward to the whole SCT thing, but if it puts me in remission for several years, then it'll be worth it.

Feeling happy and hopeful (Dexy day today! :D)
Jet

[clarabellParticipant]

Hi Jet,

I think you are dealing with the info you are given in the right way for you. My dad who has MM leaves all the figures up to my mum and myself to look into and if there is some numbers that will give him a boost on his journey he is happy to hear about them but he doesn't want to be bogged down with anylising numbers he just want to deal with symptoms and progress day to day. However I like others on this forum like to keep a check that the numbers are within a reasonable range eg my dad has PP level 14 and next week we will find out if there has been a reduction to this number.

best wishes clara xxx

[JetParticipant]

Thanks for that snippet, Clara. Very supportive!

I think the experience for patients and those who love them is necessarily very different, so we all do what we need/can to make it work best for each of us/them.

Good luck next week.

Best wishes
Jet

[GillParticipant]

Hi Jet Good luck with your SCT Stephen has had one and is duie to have another later this year. He is not dreading it like he did last time as he found it quite managable. He is dreading being away from home (old softy) but we both hope that it will put him back in remission.

I kept a diary thingy on the old site about his progress while he was in hospital, but unfortunately I did not keep a copy and all the old info has gone. I have mailed the web team to see if any of it can be accessed but have not yet received a reply

Best wishes Gill

[BADGERParticipant]

Good luck dia I hope your next appointment is a positive one we are all cheering for you :-0
Love Jo

[shirleyParticipant]

Hi Gill,has most people have said everyone is differant,when i was diagnosed almost 2yrs ago now,i was so poorly,my paraproteins was at a high of 66.3,when i had my sct i went down to 8.4,then on my 2nd sct which i had in december my paraproteins went down to 2.2,last week i got told my last paraprotein count went undetected,so i'm now in full remission and doing really well. If i was you and not sure whats what then i would ask my doctor,hope you find the answer you were looking for,best wishes Shirley x x x

[DMCParticipant]

Hi Gill, yes ok PP levels can have quite a range. Mine has varied from 42 at its highest to 1.6 at its lowest, just last month. I am now starting SCT for the first time today. will let you know how I go on. Best wishes.
DMC. Dave.

[onlymeParticipant]

Hi been wondering how your Dad is getting on .. As started on our journey together !! My mum is doing really well pp is down to 14 … Awaiting next 3 wkd to see how we get on .. Over halfway on 6 courses if CTD …we've had few episodes where mum has had bad days but on whole time is flying by! X how is your dad coping ? And just as important how are you ?
Lots of love
Only me !!
Xx

[Author]

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