Just to add to what Andy has said, my PP level since SCT January last year stabilised at 24, I have not had any treatment since. They have only just started to go up but my Kappa light chains are well within limits, heamoglobin, lucozydes and platelets are all well within normal range. On this basis I will go back next momth for another blood test…[Read more]

Hi Jan.

Paraprotein levels are only a part of the picture as far as Myeloma is concerned. As your husband is smouldering at PPs of 26 there’s no need for treatment. Some people live with higher PP levels with no problems and some people have very low PPs and have lots of problems. As you will come across Myeloma is a very individual disease.

The…[Read more]

Hi Robert

Sorry to hear you also had the flu virus. I hope you recover speedily, although I must admit that it’s taken me a good four weeks to feel my energy levels returning. Hopefully, you will not see your light chains increasing, because you have some time for your immune system to recover before your next appointment in June. However at…[Read more]

Hi Robert
I hope your b12 injections are continuing to work for you.

As expected my light chains increased by over 300 due to the flu virus. Hopefully in the next 8 weeks they might decrease in time for my next hospital visit. I asked my consultant again about measuring my b12 levels, but was told that this was not routinely available when my…[Read more]

Hi Janet
I still wear bed socks throughout the day and during the winter months at night in order to help with my cold feet. My SCT was in 2010. My concentration took around 18 months to resume to almost to normal, with my memory loss taking around two years to recover. I remember trying to pay for some items on my debit card in a shop about…[Read more]

Some good responses here, I guess the message is not to let this myeloma get to you!
I am helping to reform the Myeloma Support Group in the Leicestershire/Rutland area, thats keeping me on my toes!
Enjoy Easter everyone, easy on the chocolate.
Regards
tony F

Just a thought, for many of us, post diagnosis, our lives change so much. We don’t work as much if at all, we don’t carry out everyday mental tasks that we use to because we are physically unwell and we tend to do as we are told by the medical experts rather than question them. After all, in normal life if someone told us to do something that was…[Read more]

I thought that it was just me getting older but yes I find it hard to concentrate for any length of time. Have been reading the same book now for weeks! I find reading short articles and stuff on the iPad, ie news etc ok, and my auto SCT was over two years ago.
Get cold feet in bed, but not during the day.
Regards
Tony F

Hi, I know exactly how your husband feels about not being interested in food. I weighed about 11 stone prior to being diagnosed with myeloma in 2010, but the weight just fell off whilst I was going through chemotherapy and following a SCT, with my weight reduced to 6 stone. My body looked a mess and finding clothes to fit was difficult. Most…[Read more]

Hi David,

I hope your new treatment works well. I’ve read such good reports on the Myeloma Beacon site about Daratumumab. My consultant in Birmingham is also quite excited about this new drug, which is supposed to have a good response rate and well tolerated, but only available in the UK on the clinical trial which you are undertaking. If you…[Read more]

I remember when my father died in 2001 that I wasn’t there, neither were my two sisters. My mother was there and my brother, we know that he died painfully – he’d had a stroke and finally died from pneumonia. I don’t regret not being there. It was not easy for my mother and if I were there I would have walked away. This to me is normal as we as…[Read more]

Morning Susie, I was diagnosed three years ago, went onto the myeloma XI trial, had a stem cell transplant two years ago but chose not to go on any maintenance. So after transplant my pp’s were just below 2 after 26 months they are at 6. I had just one setback over the 26 months with food poisoning but other than that no drugs other than three…[Read more]

Live in Leicester if you consider that city only to pleased to be involved.
tony.farquharson@btinternet.com

That was meant to read Leicester Royal Infirmary.

No, no, at the royal it is a 6/7 roomed isolation unit, you have to buzz to get in, they don’t encourage too many visitors at the start of treatment, even later only two, my wife had to remove shoes and outdoor coat etc before coming into my room, and had to wash hands thoroughly. You don’t get any of the coming and going that you get in a normal…[Read more]

I was in isolation for three weeks, before going in I downloaded some good books to Kindle, took my iPad with me. There was a radio and TV in the room, so daytime TV got a temporary new viewer!
When I returned home we were careful with surfaces i.e. loo, door handles etc etc. I seemed to sleep a lot, didn’t eat much for a while, after about 6…[Read more]

Leicester Royal Infirmary send me a letter after each consultation, briefly outlining the subjects that we discussed, if any treatments were recommended but most importantly all the blood readings.
In the myeloma diary page 15 there is a chart showing the normal blood readings, so its easy to compare.
Why don’t all hospitals do this. It certainly…[Read more]

Jeff.

I was on Velcade 18 months ago prior to my SCT and didn’t have any rashes. Since then, over the last month or so I have been getting pain and a rash on my feet and also very dry skin on my Scalp. I discussed both with my consultant who has ruled out any link with MM or it being a dormant side effect of the Velcade. However, having discussed…[Read more]

Hi Robert

I can really understand why you are so pleased with your blood test results. Your drop in paraprotein level is excellent. Fingers crossed, your next results will be just as good. The B12 injections have certainly managed to raise your B12 levels. Are further injections going to be necessary to maintain your B12 levels, or was the…[Read more]

Maureen, the very best of luck to Ian, oh and to you, you are the carer, and at times I think that the carer needs more support than the patient.
You know from past postings that a SCT is not a walk in the park, but it can and is doable, I am sure that Ian will cope with all that is thrown at him.
Good luck Ian
Regards
Tony F