[tw744Participant]

Hi John

That sounds like a lovely breakfast menu! The patient information leaflets for Velcade and Lenalidomide don’t seem to contain any diet restrictions, though the MUK Velcade treatment guide does advise not having green tea Bortezomib MUK.

You might find this CRUK webpage useful Food and drink to avoid during cancer treatment. Other fruits I’ve had proscribed at different times in the past (but I can’t remember what I was having in the way of treatment at the time) are cranberries, pomegranates, lychees and star fruit.

It seems that there should still be plenty to choose from in the morning!

All best
Tim

[tw744Participant]

Hi John

I’m glad to hear you’ve got started on your treatment. Your description of the ins and outs of arranging local treatment in Thailand makes one realise once again how lucky we are over here with the NHS.

With regard to your query about paraproteins/light chains, there is a useful explanation on this site in the ‘Ask the Nurse’ section Ask the Nurse – Paraproteins and free light chains. Around 20% of myeloma patients do not secrete a paraprotein and so disease progress has to be monitored using the light chains only – your doctor will be able to tell you if this applies in your case. As you say, light chains are assessed using Nephelometry and there is another method called Turbidimetry.

Good luck with the VRD – let us know how it’s going.

All best
Tim

[tw744Participant]

Hi David,

Just wondering how you are faring now that you’ve got your treatment under way. Two weeks in, it’s a bit early for getting used to the routine but hopefully you are feeling a bit more settled and the side-effects (if any) are tolerable.

All best
Tim

[tw744Participant]

Hi David
I’m Tim, another forum volunteer. There’s a lot of encouragement and good advice in the previous posts.
I was diagnosed at the age of 43 and still remember the initial shock and feeling of loss of control of events. It takes a while to adjust and I wish you luck with the treatment – don’t be surprised if the Dex makes you a bit hyper and irritable!
22 years on I’ve just applied for my state pension so don’t lose hope.

[tw744Participant]

Hello sachbarnes
Glad to hear that your Dad has got through his transplant and is back home.
As others have said, his consultant will advise on when it is appropriate for him as an individual to be revaccinated.
Talking generally one should be able to have the covid jab at least 2 months after an ‘auto’ (own cells) transplant and 3-6 months after an ‘allo’ (donor cells) transplant, according to both Blood Cancer UK and Anthony Nolan, bearing in mind that these are not myeloma specific charities. In its COVID-19 Vaccine FAQs Myeloma UK states that ‘Re-vaccination should be considered 2-6 months following HDT-SCT’. Link to faqs

• This reply was modified 2 years, 7 months ago by  tw744.

[tw744Participant]

Hi Pottersgirl
I believe the guidance is that those of us who have had three primary doses plus a booster (4th dose) should be eligible for the spring booster provided at least three months have elapsed since that last dose. I had my 4th dose in February so will have to wait until May.

[tw744Participant]

Hi Rich
When I said ‘the system works’, maybe I should have just said it worked for me but hopefully others will have a similar experience in terms of speedy response, though what if any treatment follows will be an individual thing.
My symptoms were very similar to what you describe but if they’ve gone now that’s good, and as it’s a week since the brief contact you describe I’d have thought you’re in the clear. One more LFT?
After the antibody treatment on Friday afternoon (I didn’t get any of the antivirals) I had a bit of a temperature and chills that evening, but that and the other symptoms settled down overnight and I’ve not felt too bad since apart from feeling monumentally tired. In addition my ‘T line’ on the lateral flow took longer to appear today (yesterday it was solid vibrant red before the liquid had got to the end of the window!) so things look like they are going in the right direction though it may be a few days yet before I post consecutive negatives and can resume the myeloma treatment.
All best, Tim

[tw744Participant]

Hi All, yet another Peer Volunteer here!
Just thought I’d add my experience, having gone down with Covid last Tuesday: I did a routine lateral flow test that morning prior to heading up to London for my myeloma treatment. When it came up positive I called the hospital, who obviously said ‘don’t come’ and registered the LFT result online, before posting off the PCR test that they sent us.
That evening I got an email from the NHS telling me to expect a call within 24hrs to be triaged for Covid treatment – this must have been triggered by my registering the lateral flow result as my PCR was still on its way to the lab. Got the call the following morning and after a few questions the nurse(?) confirmed that I would be referred for assessment by a doctor. That same evening (Wednesday) a consultant from my local hospital called and went through my history and current meds after which he arranged for me to have the antibody treatment sotrovimab over at the other hospital in our Trust. I didn’t hear anything until yesterday morning when the unit called and I had the infusion in the afternoon. Waiting on the doormat when I got home was a replacement PCR kit. So the system works!

• This reply was modified 2 years, 7 months ago by  tw744.

[tw744Participant]

Hi Satellite, I’m one of the Peer Volunteers for Myeloma UK and a myeloma patient.
I’m really sorry to hear how delayed your investigations are and the stress this is causing you. I can remember when I was going through the process and how difficult a time it was even with shorter waiting times.
Of course it’s entirely possible that your eventual diagnosis may turn out to be unrelated to myeloma, but if it is we’re here to support you and there is a wealth of good information here on the Myeloma UK website. I’m sure you’re already aware that some Google search results go back a long way and may no longer be relevant or accurate.
I presume that your GP is aware of your referral? They should certainly recognise how hard this is for you and may be able to offer some relief from the anxiety and sleep issues it is causing.
Please do update us as to how you’re getting on.

[tw744Participant]

Hi Frances
Sorry, I meant to copy you in on my reply to ptlelec, particularly the bit about Cholestyramine. It certainly helped me with the Revlimid induced stomach problems.

[tw744Participant]

Hi ptlelec
Revlimid has been NICE approved on the NHS since 2009, but initially it had more restrictions on who could have it in terms of previous treatments etc. Over the years these restrictions have been relaxed and in 2019 it became available as a first line therapy. MUK news
After 9 cycles of CRD (Cyclophosphamide/Revlimid/Dex), I took Revlimid (Lenalidomide) on its own as maintenance for over 90 cycles before starting to relapse. I’ve been on other lines of treatment since.
During this time I had the tiredness and tummy trouble you describe. Revlimid is the next generation of Thalidomide and has some of it’s sedative qualities and most people get tired to some degree when taking it. However after a couple of years of almost constant jippy tummy my consultant put me onto some stuff called Cholestyramine (Questran), which calmed things down dramatically. Revlimid can cause malabsorption of bile acids and this irritates the bowels – Cholestyramine neutralises the acids, relieving the symptoms.
Maybe worth asking your doctor about this at your next meeting?
Unfortunately side effects come with the good effects of most treatments – whether or not to put up with them is a personal decision.

• This reply was modified 2 years, 8 months ago by  tw744.

[tw744Participant]

Hi John, I’m one of the Peer Volunteers for Myeloma UK and have been a myeloma patient for a number of years.
I’ve been treated at a number of different hospitals and one thing I’ve noticed is that blood results (all parameters) will vary slightly between labs, so that trends are only really identifiable if the data all come from the same place. So although your Hb is certainly out of range, the variation in the numbers you quote could be accounted for by the tests being done in different locations.
I have had some private treatment at the same place as Rosary – the care was excellent but I can’t comment on cost as it was covered by insurance.

[tw744Participant]

Hi Frances, I’m one of the Peer Volunteers for Myeloma UK and a myeloma patient.
I noticed your post and although it’s from a while back I thought I’d reply as I was on Revlimid for 8 years and recognise those symptoms! Are you still taking it?

[tw744Participant]

Hi, I’m one of the Peer Volunteers for Myeloma UK and a myeloma patient.
It’s a while since you posted your question and you have probably already found your answer elsewhere, but yes your assumption is correct.
I would guess that the reason that a normal k/l ratio is not in the CR definition is that those remaining plasma cells, although below 5%, may be doing enough to put the ratio out of normal range.

[tw744Participant]

Hi Tomt, I’m one of the Peer Volunteers for Myeloma UK and a myeloma patient.

It’s a while since you posted your question but I think I can give you an answer. I have chronic dry eyes as a side effect of a donor stem cell transplant and as a result have regular visits to the opthalmology department as well as the haematologists. They have often given me drops containing hyaluronic acid (also sometimes called sodium hyaluronate) – it naturally occurs in the eyes and joints so I wouldn’t think that it could have any effect on your suspected MGUS.

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