[stanley-1960Participant]

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

[stanley-1960Participant]

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

[tonyfParticipant]

Evening Stanley, yes I also was given Mozobil, ( check out the price per shot, you will certainly be getting your money’s worth from the NHS! ) as my stem cell harvest was over two days I had two injections.
Best of luck with the transplant on August 11th, hope that it all goes well, during and after.
Keep us posted on your progress.
Regards
Tony F

[rebeccaRParticipant]

Hi Stanley, good luck with the harvesting = how times fly eh?…not researched mozibil as I only had a few GCSF but am interested as I have/had poor cytogenics – can you only get this as part of a trial? (which I didn’t meet the criteria) but I like to keep abreast in the lucky(?) event that I may qualify for a second one in the future – and aim to be much more on the ball this time. Is your kappa the lowest they think they could get it pre SCT or are they working on the assumption mozibil will do just as well as trying to reduce the kappa further? I know in the US they try very hard to reduce to the very lowest they can pre SCT which is a little different to the Uk. Any way, sounds like you’re in good hands and fit and well enough to breeze through it.

Rebecca

[stanley-1960Participant]

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

 

[stanley-1960Participant]

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

[rebeccaRParticipant]

Hi Stanley, good to hear your still in one piece tho’ no doubt a bit slimmer! The memory of it all goes very quickly but reading your post reminded me of how dire constant nausea is – I hated the mornings when they made me move out of bed to make it as any little movement seemed to trigger off sickness – nausea never went at all. Don’t know how common this is but I had really really bad sickness (and the rest) some 2 weeks after being home which floored me again. But now your home concentrate on recovery and moving as much as you can – altho people say listen to your body – which you must – I also feel pushing yourself a little bit more each day helps you quickly regain fitness levels. it doesn’t have to be much at first as just pottering about the house is a big step after being in hospital doing nothing. I know when you first come home you feel fragile and somewhat vulnerable so it is easy to not do as much as perhaps you could – especially with all the fuss and special attention you get! – but the sooner you set your sights on fitness and recovery the sooner you’ll be over all this. Just make sure that each week you are moving forward and set goals (nothing major) to monitor progress. I found when I came home I walked like a very elderly person. very slowly, and it even took a lot of effort to pick up the pace back to a “normal” pace. Your body has taken a real battering so be kind to yourself but not too kind. (I say this in the knowledge that when I had my bad sickness again at home I could barely lift my head to drink water let alone go and get a glass of it but when I was about to be sick I instinctively dashed to the bathroom like a greyhound out of a trap- so I could move and do things if I wanted to badly enough but I think I was mentally drained. When I realised what I was doing we resorted to tough love and I banned everyone from fetching and carrying and low and behold I could do it myself – the point is just moving about, up and down stairs etc is all exercise/movement in the grand scheme of things and every little counts when you want to recover quickly). I only say this as I know you are young enough to want to get your fitness back quickly. Best of luck,

Rebecca

[stanley-1960Participant]

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

[rebeccaRParticipant]

Ha ha – yes some vain people will try anything – but it doesn’t do much for the hair. Walking outside sounds fabulously healthy but entering a shop ? maybe meeting strangers/germs! and hope you wasn’t thinking of buying a paper and touching dirty germy money?! hasn’t your wife took it all off you yet as it’s not good for you? Walking outside is good for measuring distance tho’.Think the people on my Close thought I was a lost soul as I liked small circular routes to begin with and in case I felt funny – but probably just looked funny.

[stanley-1960Participant]

Hi all,

This disease is a real bummer. Tough SCT 20 days home Friday, temperature 38.1 Monday night back in at NHS pleasure. Seems like a little more solitary  for me. It is here to test us ah! Well! Enough ramblings from me.

best wishes to all,

Stanley

[stanley-1960Participant]

Hello to all,

Just an update on my journey. Went to see the consultant today +77 days SCT FLC Kappa 12.21 lambda 7.33 ratio 1.66. My initial kappa reading pre treatment was 4120 with a ratio of 527. I am awaiting PP but he said based on FLC  it should be very favourable (pre cyc infusion and SCT 0.54). If my plasmacytoma has gone(due pet scan in 3 weeks) and BMB shows the same progress with plasma cells (started with 10%) could i dare to dream of sCR. On a more negative note still got a rash on torso,arms and back of neck( like itching heat lumps). At the moment a small price to pay.

Best wishes to all,

Stanley

[stanley-1960Participant]

Hello again to all,

Final chapter of my first treatment journey. I have just had 100 day post SCT results. No detectible PP, normal FLC, zero clonal plasma cells in bone marrow and my 4″ x 2″ x 2″ plasmacytoma on the fifth rib has completely gone via pet scan. This has put me in sCR as defined by current criteria. My consultant described this as good as it gets. I am very grateful and consider myself very fortunate in what is a very unpredictable condition. I have been randomised to the placebo arm of Revlimid maintenance. After reading  extensively on the pro’s and con’s i am not too disappointed as i had a difficult decision to make if i was randomised to receive it. I would like to take this opportunity to thank everyone who has took the time to respond to my posts in what was a very difficult period post diagnosis, especially Rebecca who encouragement and  sound advice has proved a real tonic.

Best wishes to all,

Stanley

[rebeccaRParticipant]

Hi Stanley – Congratulations looks like Xmas has come early for you. Fantastic results – top of the class – believe its only 5% who manage SCR so you’ve passed your most important exam with flying colours! With a Stringent CR I am sure you can lock this away and get on with life with a bit more of a spring in your step. Great news hope you’ve had the champers on ice. “Do not anticipate trouble or worry about what may never happen. Now keep in the sunlight” (Benjamin Franklin). Please remember each one of us has a unique disease and no-one really knows what will happen – read someone has been in remission for 22 years from one treatment so go follow that Mr A*!

Rebecca

[stanley-1960Participant]

Hi Rebecca,

Again thanks for the kind words. I’m determined to lock this away until 6 months post test and if i’m in the same situation i’ll be an even happier bunny. With no drugs for the near future i may partake in more than a few glasses of champers. The positive advice on remissions of others including the 22 year remission is one hell of a target to aim for. Taking a leaf out of your book we should all dare to dream wherever we are. It is so individual.

I hope you are well.

Stanley

[stanley-1960Participant]

Hi to all,

I would be interested in comments from other post SCT patients around the subject of shingles. I have just been diagnosed just short of 6 months post.I have read online that 50% of all SCT patients will get shingles in the first 12 months post SCT with the majority of the others within the first 3 years.

Best regards to all,

Stanley

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