Hi Maureen,
Hope your holiday was a welcome break from the myeloma bubble. How is Ian coping on pom? Sorry for the late response due to project managing the refurbishment of my eldest daughters first house (very exciting). I have booked another golfing holiday with the lads to Spain in May and will be in Ireland in August( best man at a mates wedding). I thought i was a bit too old for that type of thing but hey ho. As you say there are other options for Ian with the second SCT a possibility along with the trial you mentioned. As you say FLC’s can fluctuate based on viruses and infections. I hope you are well and coping as the carer and its good to see you are picking up a fair bit of information on the disease.
All the best to you and Ian,
Stanley
Hi Rebecca,
Good to hear from you hope everything is well your end. As you say MM is so complex and we are all so different with regards to our journey. With the dissapointment of the appearance of 2 x paraproteins 5 months ago i now find one has stayed rock solid and the other is dropping. So its more golf, cycling and walking on the menu for me. Talking of time flying its actually 31 months since i had my SCT. Within the Myeloma bubble i am currently on an upwards curve with potential pitfalls pushed back to the rear.
all the very best
Stanley
Hi All,
Update on the journey. I have just come back from my latest consultancy and the mist has cleared a little over the sudden appearance of 2 paraprotiens. My Doc says after SCT he see’s second paraprotiens in around 10% of patients normally associated with reconstitution of the immune system in the first 12 months after transplant. He stated he had not seen an appearance so late 25 months in my case and could not confirm if it was due to reconstitution. Both paraproteins are the same iGg kappa which would indicate that the second (lower non dominant paraprotein) could potentially be secondary MGUS and not biclonal.As for the results the dominant one stayed the same 1.6 for the third time and the lower non dominant dropped slightly to 1.0. The facinating element is he confirmed if the second lower paraprotein is secondary MGUS their is no test to confirm benign of cancerous status at any stage including full replase. On a more positive note he did say he had seen paraproteins of my type completely dissapear as quickly as they had appeared.
best regards,
Stanley
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
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
Hi Maureen,
Sorry to hear of Ian’s relapse but glad your are happy with the way forward on Pomalidomide. I hope this brings Ian back to a position for a possible second SCT.
All the best to you both,
Stanley
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
Hi Andy,
Thanks for the reply. Had the most fantastic time. Stayed out in the sun too much, played golf too much, drank far too much, enjoyed great company too much, spent too much, deprived myself of sleep too much, punished my body too much, but through all that i diddnt think about mm too much ( well not at all really). You were so right about the theraputic nature of getting away.
best regards,
Stanley
Hi Andy,
Great to see you on your travels again and enjoying the odd beverage. Decided to take a leaf out of your book and off to Gran Canaria today for a golfing holiday with the lads. We may also take in a few trips to the local drinking establishments. Well it would be rude not to really. Hopefully your PP’s are on the way down.
Best regards,
Stanley
Hi Maureen,
Not been on for a bit. Please pass on my best to Ian and hope treatment is a long way off.
Stanley
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
Hi susie,
wouldnt paste the quote but here is the article link.
http://www.myelomabeacon.com/forum/zometa-infusions-t3180-10.html
Best regards,
Stanley
Hi Susie,
I have just had my 30th monthly Zometa today. The side effects for me as David says is the 36 hour flu afterwards this lasts for 12 hours where i feel like iv’e been kicked by a mule. For me its a small inconvenience for the benefits. I have quite a lot of bone damage and the transformation has allowed me to play golf 3 times a week, road cycle 30 miles 2 times a week and walk long distances without pain or discomfort. The interesting thing is the profession in the uk are divided on the anti myeloma properties of Zometa. Below is a quote from myeloma beacon MRC myeloma ix trial 2013
<span style=”font-family: Arial, Helvetica; font-size: 12px; -webkit-text-size-adjust: auto; background-color: #ebeadd;”>”The results of this trial showed that targeting the bone with Zometa as part of treatment significantly improved survival of patients with myeloma. These results show that preventing and treating myeloma bone disease has beneficial effects beyond just controlling bone pain and preventing fractures; it also increases survival” </span>
This survey mirrors an earlier 2010 trial covering 2000 patients. My consultant was going to stop Zometa after 24 months as per hospital protocol. I strongly stated that whatever my current results i wanted to carry on with the Zometa. He had a change of heart and i continue to have the monthly infusions indefinately. For me personally the side effects and additional risk of ONJ are outweighed by the obvious benefits to my bones and the possibility of the anti myeloma properties of the drug.
Good luck with your decision.
Stanley
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
Hi,
When i was sent home from SCT on a Friday i spiked a temperature over the weekend. Phone the ward on The Monday and was admitted immediately. The were VERY unhappy i waited. I was given intravenous antibiotics for 4 days and finally released. With the immune system so low on release the risk is not worth taking. If and when i might be in that position again i would definitely not hesitate next time.
Best of luck,
Stanley
