Hi Rebecca,

i am in one piece but as you have said a much smaller one. I am 6’3″ and now weigh 12st 8lbs. I lost a stone through CTD and another through STC.When i left school in 76 i was 13st 7lbs so this is new ground for me. I joked that i have found a new weight loss programme its called the high dose chemo diet,guaranteed to drop 2 dress…[Read more]

Hi all,

Just an update i am no longer an SCT virgin. Home today i have to admit it was very tough on me but hopefully as tom says onwards and upwards. For info i found the sickness and nausea soul destroying and whatever i was prescribed including a permanent driver with combination support failed to stop the overpowering sickness.I was poorly as…[Read more]

Dave,

Have you run over a black cat recently. But on a more serious note based on your latest diagnosis i feel such a fraud with only MM.Good luck going forward with the latest setback.

best regards,

Stanley

Robbo,

Only had a couple of them. Simple injection in the rear and then away they go. Unfortunately the anaesthetic does not go as far as the hip bone. Not the most pleasant experience. Mine have been done by the consultant no option other than described.

Best regards,

Stanley

Hi Bryn,

So sorry you have joined the club. I was devastated to be told earlier this year with bone damage arm,pelvis, spine T5, and 5th rib left side, plus skull. Had large plasmacytoma(tumour) rib 4″x2″x2″. Operated on in march, chemo April,stem cell harvested last week and SCT due next Monday. For me round one is nearly over and iv’e had…[Read more]

Tony,

Many thanks for the kind thoughts for what is to come. Mozobil £4882.77p per injection. Only needed one,theres me thinking of the NHS. Much more expensive elsewhere.

Rebecca,

Thanks for the message.As you have said all this is doable for me and the time has flown,not much more to go now. Mozobil is used in conjunction for poor…[Read more]

Hi all,

Not posted for a while just thought i’d update my journey. Finished 4 cycles CTD no problems really. M spike 0.56 , kappa 104  quite pleased. Bard line in 11 days ago followed by cyc  1200ml plus a load of other stuff. GCSF  and in tonight late for a Mozobil injection before harvest tomorrow morning. Stem cell transplant 11th August. I wa…[Read more]

Hi Wendy,

I started CTD April last course to finish monday flc kappa 4160 down to 119 after course 3 M spike 19.9 down to 0.8. Unlike you i have a plasmacytoma on my rib and lytic lesions elsewhere but treatment for me has been good. I feel better than before starting. Side effects for me have been rash through taking antibotics on myeloma XI…[Read more]

Keith,

So glad you enjoyed your trip abroad. I trust the first of many post SCT.At least Silverstone is not so far for you soon.

Best regards,

Stanley

Hi Craig,

It sounds though your making great progress after 2 courses with regards to FLC reduction. I too was diagnosed at the same time as yourself and am now on course 4 of CTD. I wish you all the best with your ongoing treatment and as Rebecca says you have youth on your side for the future.

Best regards,

Stanley

Rebecca,

Thanks for the reply. I believe there is something in what you are saying and will endeavour to pick up the thread once SCT is over and the 2 months monitoring starts hopefully in remission. I’ve decided to go back to work (from home) June to July and this has helped, where you exercise i emerce myself in work to banish the demons. The…[Read more]

Hi, Rebecca,

I’m have no fears over the  SCT  process as i treat it as a something that needs to happen so will just get on with it. I think i’m more concerned with climbing up the walls waiting for nuets to climb. I decided to leave my consultant alone on the questions and gave a very apathetic approach to the session with the operative word f…[Read more]

Hi all,

Just had bloods from day 59 CTD M spike 0.9 down from 1.8, Kappa 119 down from 398 ratio 17. Had it confirmed last course cycle 4 to complete then SCT. Feeling incredibly well at end of course 3 including energy levels. I do consider myself very fortunate at present due response to the treatment.

Best wishes to all,

Stanley

I’m at the same hospital for SCT. I can see your thinking around peace of mind and will accept my progress is more important than actually knowing at this stage. It’s strange how i signed up for Myeloma 11 and would have had the results as part of the trial but when i decided not to have additional BMB’s as part of the process (6 instead of 4…[Read more]

My fish array has not been done he said it was around cost and still unclear of the benefits. I gave him an uncomfortable time with certain questions including policy statements, karyotyping and current and future guidelines. The BCFH have just issued new guidelines stating every newly diagnosed MM patient should have fish array done as standard.…[Read more]

Hi Rebecca,

Hope you are well,i’m in a very positive place right now but was getting hung up at consultant appointment about lack of cytogenic information. He told me i need to focus elsewhere. Based on the response i would hazard a guess that my chromosomes are not high risk(or am i talking rubbish i normally do).

Best regards,

Stanley

Hi all,

Just had my M spike results after 32 days  original 19.9 down to 1.8. The trial nurse said this puts me at VGPR. The plasmacytoma seems to be rapidly reducing which if it disappears could push me into CR. I am amazed by the progress and am already ready for SCT after one and a half cycles but have to have the minimum 4.

Best regards to…[Read more]

Hi, Ali,

Just got back from seeing my consultant today. Asked a load of questions about my plasmacytoma. He would not recommend radiotherapy at the same time as chemo. He was not concerned at present that it has been hanging off my rib for possibly up to 12 months.He said there would be no permanent degradation of the bone due to the prolonged…[Read more]

Hi Graeme,

It sounds like i am at the same stage as you diagnosed march on second cycle now CTD  raging hiccups week one. Luckily no problem since. I believe i have lesions all over the place skull,back, ribs,upper arm and shin but unlike yourself my mobility is good. I also have a plasmacytoma 4″x 2″x 2″ on the 5th rib. Speaking to my…[Read more]

Hi all,

Just had my results from bloods 32 days into CTD.

Kappa 398 down from 1164 lambda up to 15 ratio down to 26 from 120.

From the original figure of Kappa 4120 and a ratio of 527 that is a 90% reduction. Can anyone comment on these figures based on CTD 32 days in.

Best wishes to all

Stanley