Maureen,

I am very saddened to hear the news that Ian is no longer with us. You are in my thoughts.

Stanley

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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 i…[Read more]

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…[Read more]

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…[Read more]

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,…[Read more]

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…[Read more]

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…[Read more]

Hi Maureen,

Great to hear Ian had a lovely day and those FLC’s are still check. Copenhagen and Bermuda sounds fantastic.

Best wishes to you both,

Stanley

Hi All,

Just thought i would update my current situation. Its now over 2 years since my emergency surgery to remove a 4″ plasmacytoma from my chest and 19 months since SCT. All my readings were normal at recent consultancy with the news that i am being moved from 2 monthly consultations to 3 monthly. In the 19 months since SCT i have had 2…[Read more]

Hi Lyns,

I had auto stem cell in August 2014. While in hospital i has a rash covering the upper torso only including scalp and arms. When i went home this got worse especially on the back ,neck and scalp (rear). The discription of the rash would be maculopapular (dry small red flat spots with raised lumps). Essentially it felt like hundreds of…[Read more]

Hi Andy,

Great to see you progressing and on the mend after the very tough time lately. Every time you mention the demon drink it brings a smile to my face. Im moderating my consumption at the moment but have a big trip coming up where my constitution will be severely tested. As i always say to my mates this ain’t no dress rehearsal. I look…[Read more]