[robert0439Participant]

Hello Sajida. Oddly, I sent a message into the NHS admin group only yesterday, as I too as a MM sufferer for several years now also wanted to see my results, as I need to track my kappa light chain numbers.

Any blood test that are prescribed and taken at my local GP surgery, are always visible on the NHS App however, any blood tests that are prescribed and taken at my local hospital are never seen on the App!

I’m still waiting for a response back but am hoping for the best.

Kind regards, Robert

[robert0439Participant]

Hi. I can only relate to when I had my SCT in 2018. I had a load of chemotherapy prior to the SCT which knocked me back somewhat to say the least. The harvesting of my stem cells was not an issue to me.

After my 2 weeks in Nottingham City hospital, I was discharged and went home. I was given a bag of prescription drugs to which I had no will or enthusiasm to sort. I was wiped out totally and spent a lot of the first month sleeping as I had no energy. My wife fortunately took over and sorted everything for me. Without her I would not be around so respectfully, you will need all the post SCT support that you can get.

I was informed by other post SCT patients that it would take me around 12 months before I could say I was back to “normal” so to speak. They were correct on this point.

Anyway, good luck and I know that having the SCT is the very best thing you can do.

Kind regards,
Robery

[robert0439Participant]

Hello Rafael. As Lottie has said, sorry to hear about your diagnosis. For me, I was diagnosed with smouldering Myeloma one year after I had retired in 2013. I was going strong until 2018 when my Paraprotein levels increased dramatically so it was time for my stem cell transplant.

I had several years to do some research on this as I knew sooner or later it would happen. Anyway, I had my SCT in 2018. Again, just like Lottie I had masses of chemotherapy to prepare myself for the actual SCT which I had in Nottingham City Hospital where I was in isolation for 14 days.

Apart from feeling tired and pretty fatigued, I had no real major issues with the chemotherapy. No sickness at all so I consider myself very lucky. Again, I was lucky as I has retired a few years prior, so did not have to worry about work etc. prior to the SCT, I had my stem cells harvested which was basically, like having dialysis where it was blood out, harvest the cells and then blood back in. It was a 4 day process where I spent around 4 hours each day on the machine.

To make life easier I had a Hickman Line fitted where this was used to take blood out to test and also to put drugs into me. A simple procedure to fit this done under a local anaesthetic.

Here we are 6 years later and I’m living life as full as I can. I’m on a mixture of daily drugs to keep my Paraprotein levels low and also, my kappa light chains under control and my Myeloma, is kappa light chain related.

It’s not an easy journey however, I would not have done anything different with hindsight.

You are in the best of hands with the NHS. They have done and continue to do the very best for me, and I cannot thank them enough. I will forever be in awe for what they have done and I go out of my way to tell them this each time I have a follow up with them following my monthly blood test.

Wishing you all the best Rafael. ❤️

[robert0439Participant]

Hello Keith. So sorry to hear your about your diagnosis and the position you are in. Facing this on your own can be a challenge however, all is not lost as there are groups out there to share your burden. If you need financial help, then apply for “Carers Allowance” as this none mean tested and is helpful if you need this.

Don’t be afraid to speak with the MacMillan Centre at your local hospital as they will update you on all the latest support that is out there. They were very good with me when I was first diagnosed some 11 years ago.

Kind regards and wishing you all the very best. Robert ❤️

[robert0439Participant]

Hi. I too worry somewhat as my mother in law passed away with multiple myeloma and I gave it too. My wife and I have two sons and although nothing is ssid about this disease being more transferable to children if there is myeloma on both sides of the family, they do have blood tests every 6 months. This way, if there do show signs, then it will be caught early.

Regards,
Robert

[robert0439Participant]

Good Morning,
Although I was much older at 62, I too was diagnosed with smouldering myeloma, where following the same procedure that you will be having, “smouldered” for around 5 years before I had a SCT in Nottingham.

The bone marrow extraction is quite uncomfortable but a necessary procedure as they can then tell a lot from it and decide what to do next.

My myeloma issue is that I produce Paraprotein which others don’t. Saying this, I’m now 71 and in pretty good health as I’m being managed on a regimen of IRD. Two types of oral chemotherapy and steroids.

Since I was diagnosed there has been an enormous amount of progress on myeloma and over the next few years, I know there will be more to come. The good news for yourself is that you are only 40 and your myeloma had been caught at a very early stage.

If anything like me, you will be in good hands under the NHS as I am being looked after by the Royal Derby Hospital. I cannot fault the treatment I have been given and continue to be looked after by them.

Anyway, take care of yourself and think positive as much as you can, as this really helped and continues to help me.

Kind regards,
Robert

[robert0439Participant]

Hi and good morning. Go for the SCT as although it takes around 9 months to recover from it – well, it did me anyway it gave me 5 years of remission with no medication at all. I’m now just on a maintenance dose so all on all, pretty good under the circumstances. So, in a nutshell, go for it. Wishing you well and sending you my very best wishes for the New Year.

Kind regards,
Robert

[robert0439Participant]

Morning to everyone. After nearly 5 years post stem cell transplant in Nottingham City Hospital, my remission has come to an end. My Paraprotein levels have started to increase exponentially and so the hospital is starting me on a new chemotherapy regimen.

I will be taking “IRD” which is Ixazomid, Revlamid and Dexamethasone together with some support drugs which are anti biotic, anti fungal and anti sickness. All in all, I’m really being looked after by our beloved NHS.

My question is, “Is there anyone out there in a similar position, as I would like to hear how they are managing?”

Stay well everyone and my best wishes to all.

Regards, Robert

[robert0439Participant]

Hi,
I had a total of 23 infusions and missed the final infusion due to Covid. I had no real issues at all except on some occasions, I had a slight headache and felt tired. Nothing as far as I am concerned for your husband to be worried about. Wish him good look from me.

Regards,
Robert

[robert0439Participant]

Hi there. The good new indeed is that you have been caught early and you will realise with time that this is the best thing – under the circumstances that is.

I too was caught early and was “smouldering” for 3 years before I actually started any treatment as my Paraprotein levels had started to increase to a level where they through it prudent to start.

I won’t sugar coat it as the treatment and then the stem cell transplant, followed by recovery is debilitating. The good news is that you are young, fit and have 3 children to spur you on. It does take 12 – 18 months out of your life but for me, it has worked great, as 3 years after the SCT I am in full remission and enjoying life to the full – well under Covid as much as anyone can, but feeling positive and looking forward to summer.

Dig in deep, pull out all the stops, have your family around you so you can share the down times, but also share the good times – and there will indeed be good times.

You will be in the wonderful hands of the NHS, so you could not be in a better place. They will all have your interests at heart, so take my very best wishes and run with them and I know you will have the success that I have had in kicking Myeloma into touch.

Kind regards,
Robert

[robert0439Participant]

Only yesterday I had my shot of Covid vaccine and this morning I only have a little discomfort in my arm. Bring on the second dose ASAP. I’m 3 years post SCT, on no medication and in full remission. My Paraprotein levels are zero so I am a very happy man. Best wishes to you and everyone else. 😀😀😀

[robert0439Participant]

Hi Julie,
It’s clear to see from David’s comments that your dad is far from alone with his PN.

To answer your questions, I take “Natural Factors” Theracurmin which I buy online from “Health Monthly” and then 30Mg Duloxetine Mylan but you can get this in different strengths. The Duloxetine is a prescription drug issued to me by my GP.

Anyway, hope this helps and the very best of luck to your dad.

Regards,
Robert

[robert0439Participant]

Hi and Good Morning,
Sorry to hear that your Dad is suffering as he is.

I have been and still am to some extent, in the same boat so to speak. I am nearly 3 years on since I had my SCT and feeling better than ever as I am still in full remission with no sign of my paraproteins coming back.

My main issue however, is peripheral neuropathy which was in my hands but has now subsided however, I still get this in my feet and lower limbs. This is a known and common side effect from the Velcade. I too tried all the drugs that you have mentioned but to no avail. I now take Duloxetine in a morning and at night. It has not cured it by far, but does take the edge off things and enables me to walk and have a bit better life than always struggling with the pain.

I also have an injection of B12 every 12 weeks given to me at my local surgery buy also take a bunch of general vitamins which I believe also help me, but nothing is proven here so maybe this is just the placebo effect but they don’t do me any harm so I continue to take them which includes Theracurmin.

Sorry I don’t have an answer to your Dad’s problems but this is just to let him know that he is not alone as many others are suffering the same issue. With some people it does get better with the passing of time so just tell him to hang on in there and continue to speak with his medical team, as new drugs are coming onto the market all the time.

Kind regards,
Robert

[robert0439Participant]

Morning Matthew,
Basically, it depends on your ability to walk. If your Myeloma is affecting you in this way then it goes towards you being eligible for a Blue Badge. Having Myeloma alone is not a blank cheque in getting one. Hope this helps.

Regards,
Robert

[robert0439Participant]

Hi Becki,
Sorry to hear that your father has been diagnosed with MM and also in the manner which he was informed, which was not very tactful to say the least. Where is bedside manner which should have been there?

May I ask what test did he have for him to be diagnosed with MM?

You also say that he has brittle bone issues. Again, may I ask what tests he has had to determine this?

Once the scan has been completed and the results obtained, then I would push to get to see the consultant as soon as you can.

Kind regards,
Robert

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