Rebecca,
Great to see you in such good spirits. I am in awe of your achievements on one STC wow.The second tennis club and more play 😮 you should be slowing down incredible news so pleased you are still able to do what you clearly enjoy. What you say in your posts about the early days of diagnosis and all the uncertainty it brings is so true. 10 years on and I’m saying what was all the worry about “ Im that bad I wouldn’t burn” as they say😂. Best of luck with those bloods and let me know how you get on. I also hope Richard is doing ok fingers crossed.
All the best,
Stanley
P.s. early post and I’m not even on Dex 🤣🤣
Hi All,
It’s quite a while since I’ve posted on here but would just like to update my story with a big event. It is 10 years today that I had a 4” tumour removed off my fifth rib and a diagnosis of myeloma was given. 2 STC’s later (2014 and 2021) damage to the spine T5 and T11 holes everywhere, cervical stenosis and a more recent basal cell carcenoma. My kappa light chain post second transplant is 30 but my ratio is an excellent 1.39. My status now lenolidonide maintenance 10mg which I tolerate ok. I’m living not existing and have achieved over the last 10 years so much in my professional life and personally have many treasured memories. I continue to eat and drink in moderation (ha ha) and have no intention of stopping just yet. Rebecca and Richard hope you are both doing ok.
All the best,
Stanley
Hi Rebecca,
The harvest process for me was much easier as it was one 4 hours session after mozobil. Due to the poor harvest I felt perfectly normal afterwards where the first time round I felt like I’d been squeezed through a mangle and was in a cold sweat for 24 hours. The harvest itself was so poor I decided to look into stem cell cellularity which explained the decline through age and the estimated percentage left by the time you are 61(30% stem cells 70% fat)so felt a lot better after reading the fascinating article.The transplant mentally was tougher before going in but once I was there just got on with it. A new anti sickness drug was given that lasts for 5 days which helped greatly. Got a line infection which was cleared up very quickly with copious amounts of antibiotics. In hospital for less time 20 days v 28 first time around. The recovery at home was much better and side effects seem less. The decision to go for a second transplant for me was easy. It’s a treatment in the toolbox and if I decided against it they were very clear there would be no other offer further down the line. Not wanting to lose the opportunity I went for it. We are all very different and whatever you choose in the near future I hope it goes well.
Stanley
Hi Richard/Rebecca,
Sorry for the late reply had a very busy few months. Had another harvest not brilliant but been on chemo for a year. Added them to my existing saved stem cells(some were damaged) for a total of 3.5 million. Second transplant in May. To be honest still very tough but it seemed easier than the first. Lost 2 dress sizes again Rebecca on the chemo diet, definitely on to that winner.No paraprotein evident light chains were 27 but on a downward curve. Ratio 1.8 nearly normal. With post 100days still a couple of weeks away and bloods taken weeks ago dare I dream for a stringent response soon. On the 10mg Revlimid maintenance regime with no effects at all. So positive to a return to work(from home first) until jabbed again. Hope you are both ok.
Stanley
Hi Richard,
Sorry to here you have to start a new treatment. Hopefully the daratumumab will sort you out. Like you I look at the website on the very odd occasion for familiar names. I too am on treatment at the moment as the kappa free lights started rising and more bone damage occurred. Currently on month 5 of IRD with the results on a downward curve. The ultimate end for me is the opposite to you as I would like a second SCT with 5 million stem cells still on ice from the first transplant.The consultant said I have no chance at the moment with COVID due to risk but am hopeful things will change. Good luck with the new treatment.
Stanley
Hi Richard,
I asked both my previous consultants of regular skeletal monitoring with regards to my history of bone disease and ran up against a brick wall with the excuse regular exposure to radiation is not good for me. I could have been economical with the truth and said at any stage my back was severely painful and would have gotten one but that’s not the point. I have completed 5 fractions of 4gy’s Per fraction on my back and after being in considerable pain was offered Dex which sorted me out immediately. Will have to wait for 2 weeks now to see how it’s done and whether I need another Roasting.
I am very surprised with the differing responses in Germany and the UK to who is vulnerable and what they must do to shield themselves from this virus. All myeloma patients at whatever stage in the UK must self isolate for a minimum of 12 weeks. Whereas in Germany you are allowed to work in close contact with others. I’m not sure if you have been tested or the elderly residents you are looking after have and to what frequency. Good luck with the problem with your Femur and hope it all gets sorted.
Stay safe,
Stanley
Hi Richard,
Another stem cell was always the plan with my consultant as she says it gives drug free remission. She has promised me at least 3 and a half years based on first time round response. The accord trial could put in the arm for continuous maintenance though with Ninlaro. After and emergency consultancy the other day it seems I have more pressing matters. My vertebrae T11 is half eaten away with a tumour surrounding my spinal chord(no wonder I didn’t want to play golf ha! Ha!). I have been measured for urgent radiotherapy to start any day now.
On the bright side the multi disciplinary team super imposed both CT scans from 6 years ago till now and concluded that no other lesions had occurred anywhere else.
Always end on a positive.
Stay safe,
Stanley
Hi Rebecca,
I got a letter from the kidney unit being asked by a specialist kidney doctor who asked me to isolate for At least 12 weeks. I would have thought it would have been from the haematology team as I have never been involved with the renal unit and kidney function has always been good.
Regards,
Stanley
Hi Rebecca,
The relapse is not the blow I thought it would be as I worried about it coming back for the first 2 years then got on with life. I am philosophical and will have had 6 years before starting a new regime. There is plenty of hope for another long remission based on disease history. How wonderful you are still in remission, you will be setting some kind of record soon truly inspirational.
Stay safe,
Stanley
Hi Rebecca,
Sorry that I failed to respond to our anniversary. Hope all is well your end. Unfortunately I am relapsing this end with light chains rising but paraproteins still low. All other bloods were ok. My consultant has agreed the myeloma Xii accord trial when the time comes and another transplant as I have 5 million stem cells from the first time round. Happy to be on that one as thalidomide worked so well first time round and wanted to give it another go. Just retired again Friday to self isolate for 12 weeks.
Best regards,
Stanley
Hi Richard,
Great to hear you are still going strong. I totally believe what you say its all about attitude. I have never thought why me! Instead my mantra is, it is me so get on with it. I will look forward to hearing from you again in this marathon race we are all in. If posts of this nature by us can show the recently diagnosed patients there is life out there with myeloma then we have done our little bit. Anyway must dash im off to the pub for an afternoon of gambling and drinking And if theres any money left i’ll waste the rest.
All the best
Stanley
Hi Rebecca,
Great to hear you are doing so well and have found the right balance for you. As you have said to me in the past staying in the light is the key. 5 years 3 months post SCT is an incredible achievement, well done you. I look forward to another corrspondence in a years time.
Best regards,
Stanley
Liz its a long time since i have been on the forum and just noticed your post. I am so sorry for your loss and hope time will heal the pain of Kev’s passing.
In my thoughts,
Stanley
Hi All,
I have not been on the site for quite a while due to busy work lifestyle commitments. I would like to share it is 5 years to the day i was diagnosed with a 4″ tumor in my chest, extensive bone damage and kappa freelights well over 4000. I am still treatment free from a stem cell transplant in 2014. Although this disease is so unpredictable i am living my life as normal as possible. I have returned to work and achieved all my ambitions in the last 2 years that were cut short at diagnosis. I eat and drink (to excess) as per pre diagnosis and play golf whenever i can. I continue to stay positive for the future whatever it holds.
Best to all,
Stanley
Maureen,
I am very saddened to hear the news that Ian is no longer with us. You are in my thoughts.
Stanley
