Thanks again for the prompt response. Good to hear your story and the treatment regimen and treated at home…lucky you.

I’ll keep you posted on how I get on, when it starts…but hopefully it won’t quite be yet. I’m still hoping that I stabilise for a while.

Have a good Easter.

Onwards and Upwards

Scott

Do you mind me asking how old you are? Do you still work?

I’m hoping that I can continue to work even with the treatment but I do have a pretty sedentary job.

Where are you treated?

Thanks in advance.

Kind Regards

Scott

So had a recent marginal increase in my light chains. Been to see Doctor today and although he’s not too worried at the moment at the numbers which are approx 102. He did discuss if they increase again that he may want me to go on Kyprolis or Carfilzomib. Apparently I qualify because it’s a biochemical relapse which is essentially a…[Read more]

So had a recent marginal increase in my light chains. Been to see Doctor today and although he’s not overalls worried at the moment at the numbers which are approx 102. He did discuss if they increase again that he may want me to go on Kyprolis or Carfilzomib. Apparently I qualify because it’s a biochemical relapse which is essentially…[Read more]

That’s awesome, well done!

Onwards and Upwards

Kind Regards

Scott

I was 41 when diagnosed with lambda light chain myeloma and after 4 x cycles of CTD, I had an Auto SCT followed by a RIC Allo SCT (donor transplant).

Should you wish to discuss anything about your treatment, I’d be happy to tell you my experiences.

You can email me directly on scott.mckenzie2@btinternet.com and I’d be happy to chat on…[Read more]

I have lambda light chain myeloma. I have had Auto and Ric Allo SCT’s and I’ve been in remission (after 4 cycles of CTD) since approx November 2013. I consider myself to be very lucky and coped extremely well with the treatment I had.

I have since emailed my Doctor so I’ll see what follows, however as you say, they may not be…[Read more]

I have lambda light chain myeloma. I have had Auto and Ric Allo SCT’s and I’ve been n remission (after 4 cycles of CTD) since approx November 2013. I consider myself to be very lucky and coped extremely well with the treatment I had.

I have since emailed my Doctor so I’ll see what follows, however as you say, they may not be…[Read more]

Many thanks. I’m going to give the hospital a call tomorrow and try and get some answers, I have also since found out that light chains can sometimes be elevated because of illness etc. I’e flu or a cold.

I’ll post back when I know some more.

Kind Regards

Scott

It’s been. A while since my last post because luckily I’ve been feeling so well.

I got home from work tonight and I’d received a letter from the Hospital following my last 3 Monthly check up. All seems ok, however my light chains have increased marginally to about 108.

This was a bit of a shock because I’m used to getting letters…[Read more]

It’s been. A while since my last post because luckily I’ve been feeling so well.

I got home from work tonigh and I’d received a letter from the Hospital following my last 3 Monthly check up. All seems ok, however my light chains have increased marginally to about 108.

This was a bit of a shock because I’m used to getting letters…[Read more]

Richard, just read your post on Facebook which was posted yesterday. I know have replied before, but just wanted to reiterate how important good news stories like yours are to the site. Positive stories gives us all hope and this must not be underestimated in anyone’s fight against MM. 12 years, that’s awesome!

All the best, Scott.

I’ve too have had tandem SCT. Auto then Ric Allo within 6 months. If you want to discuss then please email me on scott.mckenzie2@btinternet.com

I’ll then give you my number and we can chat whenever suits you.

Kind Regards

Scott

Great to hear your hubby is doing so well and its great that he can chill out and enjoy life. Good luck on the Holiday, sounds fantastic!

Kind Regards

Scott

Thanks for the reply.

5 years…that’s awesome!

I know there are a few with lengthy remissions and they must be celebrated, if only to give hope and comfort to people who are not that far down the road and are uncertain for the future.

Keep fighting the good fight!

Kind Regards

Scott

Its been a while since I have visited the site but just thought I’d share my thoughts.

Today is 3 years exactly to the day, since being diagnosed at the age of 41 with MM. I wont lie, my world collapsed that day, however my family and friends got me through and for that I feel eternally grateful.

I feel especially lucky because after…[Read more]

Sorry, correction my Allo was done in June 2014 (not 2015 as stated above…typo).

Kind Regards

Scott

My name is Scott and I’ve not been on here for a while. I came on today to see if there was any information on the Immunotherapy treatment mentioned in the news today.

Anyway I digress…I have had both the Auto and Allo (RIC – Reduced Intensity Conditioning). I was diagnosed in Aug 2013 at the age of 41. At the time I had broken…[Read more]

It’s been about 8 weeks since the visual disturbances started to happen, however, it has eased. It’s still not perfect, but better.

I did have a CT scan and that came back clear, so not sure what’s caused it, Specialist thinks it may be stress to do with work…so in short it seems to be getting better.

I was diagnosed in Aug 2013…[Read more]

I know this is a little clichéd, however I have the quote below on my wall in my office at home and look at it every day. I compare this quote with the struggles with treatment pain and worry which we face, but bravely continue on, no matter what myeloma brings.

“Let me tell you something you already know. The world ain’t all su…[Read more]

Thanks for the reply. I’m not sure what it is but I’m having a CT Scan tomorrow, which will hopefully give me an answer on what’s going on, or at least, reassure me, that nothing serious is causing it…either way I’ll know in a few days.

I’ll keep all posted if I get an answer.

Kind Regards

Scott

I’m glad to hear, because I’m booked on the Manchester info day in November. I have booked before but never attended for the fear of finding out too much info that could possibly scare me for the future. However, I thought it best to attend and find out for for myself.

Looking forward to it now.

Kind Regards

Scott

It’s been a while since I have been here but I have had an issue with my vision recently and wonder if anyone else had experienced anything similar?

I have an issue with my eyes, like I’m a little drunk but without having any alcohol. I have no pain, no hearing problems and had an eye and hearing test and everything is fine, yet I…[Read more]

I have read…[Read more]

I’m suprised at how well I feel actually with regards to the Allo, however, I believe its generally well tolerated especially in younger patients (I’m 42) and I think this this is largely due to the RIC (Reduced Intensity Conditioning) regime which I chose to have. Mine is the SEATTLE PROTOCOL and consists of 3 x days of Fludarabine…[Read more]

I too had pain, bad pain before we went away on Holiday and I even visited the Physio a few times hoping that they could cure me of what we thought was ‘muscle pain’! Little did I know then what was to come. It was the worst holiday I will ever have, however if I hadn’t of gone then I may not have been diagnosed as quickly as I could have…[Read more]

I was diagnosed last year (nearly 12 months ago) and I was quite bad from the off with collapsed vertebrae which happened whilst we were on holiday abroad. In this respect, we really didn’t have a choice because they knew something was up. My kids are older and were 15 and 12 at the time and we decided to tell them everything from the…[Read more]

Thanks for the reply. Yes, my Wife and I are part of the Facebook Page for Allogeneic Transplants but I thought I might try my luck on here.

My Mucositis has lasted approx 7 days so far, however, luckily now seems to be subsiding. My Seattle Protocol detailed 4 x small infusions of Methotrexate of which I had 3. They cancelled the last…[Read more]

I am +8 days after RIC Allo, currently being seen as an outpatient, however, have just started with sore, swollen mouth, ulcers etc and apart from a little Nausea and tiredness from the TBI everything else is generally ok.

I just wondered how long it has lasted with other patients? I suppose everyone is different but I’m looking for…[Read more]

That’s great news. A real uplifting story that helps keep others like me going and gives them hope. I was diagnosed at 41 last August, recently had my Auto (Feb) and I’m due my tandem RIC Allo at the beginning of June. Luckily I have a fully matched unrelated donor and I’m hoping everything works out and I don’t get too much GvHD, but…[Read more]

I am doing really well thanks and I’m approx 7 weeks post Auto Transplant now and feeling great! I was quite lucky with my SCT because I didn’t really struggle at all. I had my High Dose Chemo (Melphalan) and then Stem Cells returned to me 24 hrs later (after plenty of IV fluids) and then was sent home again until my counts started to…[Read more]

I went back to MRI on Wednesday and my Neutrophils had risen slightly but not by much, they were up to 0.83. I too had another injection and I have to go back on Monday for another quick review. I feel pretty good though and I have started doing things like walking the dog and I even tidied the garden yesterday and cut the lawn,…[Read more]

I have been ok thanks. I am still a little tired however have started to do more this last few days or so. I too went to MRI on Friday for a check up. My Hemoglobin and Platelets were more or less back to normal however my White Cell count had dropped. My Neutrophils were 3.53 the day I left Hospital 11 days ago however were only 0.79…[Read more]

Thanks for the reply. I never thought of that, maybe it is something to do with the Melphalan. It does ease with painkillers however it’s always there, like a dull ache in my arm / shoulder all the time.

I’m due back at the Hospital on Friday so I’ll speak to them then about it.

Best Wishes

Scott

I have just had an Auto Stem Cell Transplant and I’m recovering at home. I have been home about 5 days now and I’m feeling tired as expected. However, I also have Shoulder Pain. It feels like it’s the joint (right shoulder). I wondered if this could be caused by Zometa? I had an infusion just before I left Hospital which was the first…[Read more]

I got home last night. I spent a total of 10 days in Hospital (1 night after the Chemo – 11th Feb) and then was I treated as an outpatient until being admitted on the 16th Feb. I then spent a further 9 nights in Hospital until coming home yesterday. The first night I was in a private room but when admitted I went on to the ward. Bed…[Read more]

Thanks for the reply, appreciate the support.

Cheers

Scott

I should have gone in today (10th Feb) but had a phone call from the Ward saying that because of lack of beds currently they want to treat me as an ‘outpatient’ for a few days. This is the same situation as your Graham by the sounds of it.

I’m in tomorrow all day for the Melphalan and Fluids and then home and then return on Wednesday…[Read more]

I hope your well at the moment. I too have been spoken to about the ‘Allo’, with the possibility of a cure dangled also, however, you are right the stats are a little scary. A friend of mine who is a little older than me at 47 is having his ‘Allo’ at the moment at Christies and although he was rough for a few days initially he’s feels…[Read more]

It’s been a while since I have been on the forum. I decided to purposely avoid for a while because I was a little fed up with thinking about myeloma constantly, although unfortunately is not that easy and it’s always lurking in the back of mind!

Although seriously, I’m in a good place at the moment and feel really upbeat.

I had my…[Read more]