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 sizes. Do you think i’m on to a winner.I will take it steady as you have advised but itchy feet has started already wanting to walk to the paper shop this morning. My wife went mad and i am confined to barracks. I did empty the dishwasher before she got up ha! ha! Sickness like yourself is still with me but am managing it with tablets.
my best regards,
Stanley
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 soon as the melphalan was put in so had no rest bite before it really started.It is certainly doable as others have said and my experience overall in comparing it with the previous 4 months of CTD which actually improved my overall health is one of i knew something a little more difficult was coming.
All the best to all,
Stanley
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 excellent advice from people on the site especially Rebecca. As she would say you have age on your side and should sail through it. I feel in a very different place from 5 months ago due partially to gleaning advice and inspiration from members of this forum.I had bone pain back ribs and arm which got worse with the first week of chemo (a sign is’s working) then after that the situation improved that much that i probably felt the best for several years.
Best regards
Stanley
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 harvesters.It assists in moving the stem cells from the bone into the blood stream. Prior to going to stem cell harvest CD34 count should be a minimum of 10 with GCSF alone. Mine was 11 with my specialist SCT nurse insisting on 15. Under NHS guidelines she made the decision to go for Mozobil based on borderline CD34 count and low WBC 0.8. Had injection 23:00hrs for harvest next morning 09:00hrs. Had double dose of GCSF 08:00hrs before harvest. CD34 count went up prior to harvest to 97 and WBC up to 9.2. Amazing change makes Mozobil worth the money. The final result was one 6hr session and 10 million harvested. The interesting thing about this is as said it is believed to clean up the harvest (myeloma beacon article and trial)not sure how.Unfortunately this will not be approved if GCSF works well at present.As far as going for the transplant with a FLC of 104. The last blood were a week before consultancy and the opinion was the benefit of further sessions of CTD would be not be required as the hospital one off session of 1200ml given by the new line put in the day before(equal to 3 x 21 day regimes) would sort the last FLC reading out.
Hope you and Tony are well,
Stanley
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 was wondering if anyone had any thoughts on the use of mozobil. Research suggest that in conjunction with GCSF it reduces the chance of harvesting abnormal proteins and myeloma cells( whats left).
Best regards to all
Stanley
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 trial and bowel issues from the Thalidomide ( taking docusate and movicol) for regularity. I have my bloods Thursday for consultancy next Monday and am hoping for further reduction in both readings before SCT mid July. The only other problem i personally have had is with the dex sending my sugar reading off the scale as i am a diabetic (tablets only) but refused insulin for the short period of time while on treatment. Good luck with your courses and i hope it goes well for you.
Best regards,
Stanley
nley
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 biggest problem i am trying to wrestle with is the ammount of time we have as what direction to take. Do i call it a day on work and enjoy what time i have left or carry on working only to find it was time wasted when relapse comes as it surely will. With your explanation of poor cytogenic patient 9 years remission anything can happen. As i have said previously when the mgus diagnosis came in 2005 i adopted a totally different approach and have had 9 years not worrying at all to which i am very grateful. This unfortunately is a very different scenario. Maybe i need to pick up the same approach and just treat it with the same distain,it worked last time. I like youself would not consider councilling as i am not your conventional normal human being and am not adverse to psycobabble. If i gauge myself on how i feel at the moment i would say i am better than i have been for the last couple of years,horray for the chemo. So mabye i need take a leaf out of your outlook and move on.
Best regards,
Stanley
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 from me being whatever. I seem to have all the bases covered apart from the most important one we all face prognosis. When will the relapse happen. How long is a piece of string. It’s impossible for us all to plan ahead. He offered me support based on my response to the session to which i asked will they have the one answer i need. He said no to which i replied whats the point then. I do feel a sense of guilt with my greed for more especially when everyone on this site has to deal with the proverbial ticking time bomb.
Hope you are well,
Stanley
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 normally done) the consultant decided not to fish array my sample. I believe at present it is not standard or required under NICE to have it routinely done.
Best regards,
Stanley
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. He stated his mate had been instrumental in the document and he still stated he would rather buy essential drugs for the patients than carry out the test. I looked up the cost £892 average, cheapest £400 and the most expensive £1500. I also asked him about the karyotyping to see if any abnormalities were seen after they were paired up but he was very evasive. He asked me why was it so important to know to which i stated if i have poor cytogenics i can then decide the direction i would like to go. If i have good cytogenics i could possible plan my life a little based on the results.As you have said i believe fish array and individual treatment plans are the way forward as the disease is so varied but this at the moment is not shared by my consultant.He even suggested if i was that bothered i could always pay for the test to be carried out privately. It seems he is under pressure to manage his departments budget and justify his spend.
Stanley
