[dickbParticipant]

Hi Stanley, good to know things are going well, know what you mean about colds, my daughter picked up a cold from school and it’s hit me really viciously. The system here in Germany is that I have to see my GP first for initial treatment and then go to the consultant if it gets really bad. So far just feeling washed out, my GP phas prescribed antibiotics and checked me out for Pneumonia, I’m hoping it won’t last too long.

Like you we are trying to make the most of things before the MM raises it’s ugly head again. I’m on Revlimid as a maintenance drug now with 3 monthly blood checks so still doing alright. Make the most of things and enjoy the exercise as I believe it does help to manage the MM. Enjoy Barcelona.

Richard

[rebeccaRParticipant]

Hi Stanley, Glad to hear that life is treating you well and there’s no reason why it shouldn’t continue. I am 2 1/4 yrs post SCT (so will qualify for another one as standard now under NICE) and feel the best ever at the moment. Have finally just (this week) started taking the circumin supplements – same brand as you – did you ever up your dose to 4 a day as it states 2 only and 1 at a time? I take 2 together but wonder about upping to 4? Have your light chains increased since post SCT – mine are still within range but have increased very slowly.

Rebecca

[stanley-1960Participant]

Hi Richard,

Sorry to here of you current nasty cold. Hope its sorted very soon. I intend to carry on with the excersise especially the walks out in the country. I strangely find the solitude good for the mind as much as the excersise. Glad your also making the most of things while your on 3 month bloods.

Hi Rebecca,

So pleased your feeling so well brilliant news. It must be all that tennis lol. Like you hoping to get 2 years for automatic second SCT although new guidelines state consideration should also be given at 18 months. I have not upped the dosage yet but will start tomorrow now you mention it. My light chains decreased for the first 8 months post SCT then started rising over the last year by small ammounts until the last one which the dropped slightly for the first time. Like you my Kappa is still ok with the ratio just out of range by .02 but on the way down. I had my first infection over xmas and i believe that contributed to a slight raise in Kappa (but not out of range).

best regards to you both,

Stanley

 

[stanley-1960Participant]

Hi All,

Just a brief update on my journey. I attended a consultancy this week and was told i have a paraprotein reading of 1.1 slow flow from undetectable for 25 months after SCT. The official line is relapse serological asymptomatic. The reading has come out of knowhere. My light chains are still good and all other bloods are excellent. When i presented in March 2014 PP was 19.9 and kappa light chain was 4120. My consultant has decided to watch and wait for 2 months based on no clinical symptoms.Its all very frustrating considering my general wellbeing.

On the plus side went out golfing afterwards and hit my best round ever 85 gross playing off 26 for a net 59 washed down with several lagers. Aint nowt as strange as life.

best to all,

Stanley

[stanley-1960Participant]

Hi All,

I have just come back from my latest consultancy with more questions about this crazy disease. My relapse from CR with two M spikes ( different clones)  have stayed the same  from suddenly appearing 2 months ago fast flow 1.6 and slow flow 1.1 on the gamma spectrum. No IFE has been done so i am at present unsure if they are the same intact immunoglobin duplicated or a different immunoglobin or the original one with a new one. I believe this is called biclonal myeloma or Oligoclonal reconstitution. My question is has anyone expeienced the same situation so late (25 months) after stem cell transplant with undetectable MSpike.

regards

Stanley

[rebeccaRParticipant]

Hi Stanley, Am sure you have seen this on the Beacon but have copied an extract below. Am sure there have also been discussion on their threads from people with similar developments – also think they class it as MGUS status rather than relapse if all else is good. Glad everything else looks ok.

Different M-Spike After Stem Cell Transplantation Linked To Improved Survival (ASH 2012)
4 Comments By Virginia Li
Published: Jan 16, 2013 1:13 pm; Updated: Jan 16, 2013 3:35 pm

Results of a Canadian retrospective analysis indicate that multiple myeloma patients who develop one or more new monoclonal proteins (M-spikes) after stem cell transplantation may have improved progression-free and overall survival compared to those without a new M-spike.

Myeloma cells overproduce a single type of antibody, known as a monoclonal or M-protein. Different types of myeloma are classified according to the type of M-protein the patient’s myeloma cells produce.

When a patient’s original M-spike disappears and an M-spike of a different monoclonal protein appears, this is known as monoclonal banding. When the original M-spike disappears and several new M-spikes appear simultaneously, this is known as oligoclonal banding.

“Oligoclonal and monoclonal banding are associated with better overall survival and progression-free survival … and are also associated with a better quality of response, with most patients achieving VGPR [a very good partial response] after an autologous stem cell transplant,” said Dr. Victor Hugo Jimenez-Zepeda from the Princess Margaret Hospital in Toronto, Canada, who presented the findings at the American Society of Hematology (ASH) annual meeting in Atlanta last month.

[stanley-1960Participant]

Hi Rebecca,

Did find the article you have quoted and a few more. The problem when reading them is they seem to appear early after transplant and often disappear after 12 months. I had no detectable PP for 25 months and then the 2 m spikes. I now realise you have to add both the flow measurements to get the actual PP 1.6 fast flow + 1.1 slow flow = 2.7 PP reading. The consultant was pleased they stayed the same from 2 months ago and sent me packing for a good xmas. I need to press him to have the IFE done to establish the 2 clones identity. It does seem encouraging that a scond clone has appeared with regards to survival. How are things your end hopefully you are well.

Best regards,

Stanley

[rebeccaRParticipant]

Hi – perhaps yours are just more delayed and will disappear again then? Why don’t you ask on the Beacon for others experience of it occurring much later – I am sure you will get some good feedback. I will be 3 years post SCT at Xmas and had my bloods today so will hear next Wednesday of any change – I have now moved to a 4 monthly check but think will go back to 3 monthly as I feel more comfortable with that. Feel a bit conscious of a 3 year mark and would like to think the longer it is without news the better but am now feeling “tetchy” about it all but guess that’s because I’ve just had bloods done. I am very well, thank you, probably fitter than I’ve ever been – now work 2 days and have 5 off! All good stuff and no niggles but it is difficult not to feel apprehensive of any results that will burst my bubble.

Rebecca

[deanParticipant]

Hi Rebecca

Good luck with the blood test.. it must be a nice thought to look back from where you were 3 years ago. You have done so well. It’s all that fitness you do. I have my Sct next Tuesday depending if a bed is free. You must know that feeling, I don’t mind saying I’m getting down & scared but needs to be done.  My hospital were thinking of a allogeneic soon after as a fish test was not done. Also I am IGA & one doctor said can be aggressive and other not sure.. All guess work. Maybe a fish test doesn’t tell the true picture and time will always tell. So at the moment the allogeneic is on hold to later.. I just need to deal with this Sct at present. At least from diagnoses to Sct it’s all happend in 7 months just this hard bit left…2016 a year i will never forget. just hoping I be able to be ok ish for the girls on Xmas day. In the meantime thanks for all your advise since my diagnosis you have been a great help. Dean

[dickbParticipant]

Hi Dean,

I’ve not been on the site for a while but I had my SCT at about the same time as Rebecca, just about everyone here who made it to SCT managed it and was back home within weeks, it isn’t easy but it is doable. Don’t worry if it is not a great success because there are other options. Mine didn’t really work, the medics were talking about doing a second which I refused, if the first didn’t work than why should the second? I was stable for a year and a bit then the IgG went up so they put me on Revlimid. My IgG is so low I’m classed as having almost total remission, I take only 4mg of Rev a day, I don’t need Dexy or Contrimforte anymore and just have a 3 monthly blood check. So, make the most of the SCT but it’s not the be all and end all of treatment.

Richard

[stanley-1960Participant]

Hi Rebecca,

I know just how you feel when approaching bloods and consultantcy time. The sense of foreboding appears at bloods and continues right up until the dreaded consultant visit. I book mine for 09:00am so as not to prolong the agony on the day. Three years xmas where has the time gone. You are becoming the mrs A * patient, long may it continue. As you know i am on 7 days off and 0 days on regarding work lifestyle balance. I can highly recommend it after getting used to doing whatever i want when i want. I will probably post on the beacon for the first time to see what response i get as you have suggested. My status at present is also interesting as i am classed as relapse from CR. For an official relapse i have to meet the criteria for disease progression which i am a long way off at present.Good luck with your results.

Hi Dean,

Good luck for your impending SCT ,i had mine in 2014 after 4 months of CTD. The Melphalan was a lot tougher than the induction chemo but as most will tell you eminently doable. My mantra before was it has to be done so bring it on. This seemed to put me in a good place prior to the big day. It put me in sCR post 100 day so was well worth it.

Hi Richard,

Great to hear you are doing so well on revlimid.

Best to all,

Stanley

[deanParticipant]

Hi Richard

Thanks for your tips… it’s good to know we have other options and how well your doing. My problem is that I always try and second guess this disease and plan ahead & I no we can’t.  We just have to go with it. I will certainly feel more positive once I get this SCT done and behind me.

Stanley

Thanks for your advise..Yes your approach sounds good, it has to be done.. All this hanging around for a bed to be free is not helping me..All the best and thanks

Regards Dean

[rebeccaRParticipant]

Thanks Stanley – will post if my crown slips.

Dean, good luck, the one piece of advice I give for those going into SCt is, and I say this with confidence due to your age, on average and with luck you’ll be out in around 16 days. I chose 16 days and did a little count down calendar. No matter how crap my day was when I crossed another day off and saw the time steadily diminishing it all seemed so doable. First few days..boredom rules…hard bit…recovering. Let’s face it is just over 2 weeks so no matter how you feel, remember, it is a short period of time. I felt like a prisoner counting the days off but it was so motivational and the real highlight of my day. Use the time to plan your recovery…always have something good to focus on in the future and to help step up your recovery regime. Glad you’re tapping into the Beacon it really is wealth of knowledge. Good luck

Rebecca

[deanParticipant]

Hi Rebecca

Thanks again for the tips. I’ve told my wife to not visit and look after our daughters.. I feel a duty to protect them and only want family to see me on a good day. I’m probably thinking to much in to it again. Yes this site and the Beacon are great. I’ve learnt alot, sometimes I think do I need to get this informed, but then when I meet my Doctors and I always get different views on how to deal with MM, Im pleased I can then ask inportant questions and pin them down more on answers. Specially when they talk about Allo. They still can’t decide when , I have a split decision with the team of Doctor’s .  Half say go early with Allo other half go later.. So its a decision I have to make alone.. Now I’m thinking later and just get my head around this SCT unless the team change there mind and say early .. Trust us to have a rare disease . Will drop a message in to let you know  once I’m home and hopfuly feeling better .  Enjoy xmas with your daughter.  Dean

[rebeccaRParticipant]

Thanks Dean – you’ll be enjoying xmas too also. To be honest, I think Skype, phone etc is as good as visits when you have all the family to consider. I think it will be quite a strain for your wife and it is hard to be the one with the juggling act trying to be there for everyone. I was much happier knowing my daughter was ok and in a normal routine whilst I wasn’t there and often visits are better short when you’re not feeling good. It is, however, up to your wife in the end as perhaps she may need to see you in person to help her cope. The allo is such a difficult decision (especialy when even the experts can’t agree). The biggie for me is we all know the SCT won’t cure us so it is a waiting game for it to return but I think if I could have gone down the allo route I would have convinced myself I was cured and so perhaps mentally the future is easier..but then there are potential side effects etc. oh. it is an endless game of “what ifs” – MM is so tiresome mentally – and that’s putting it mildly. Perhaps it is easier when the decision is taken out of your hands but then that’s equally unfair as it is your life and future. In the end try and put fear and, other family views, aside and go with your gut instinct I think. You are young and strong and so either way you have a good future ahead of you. Always remember that.

Best wishes

Rebecca

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