[mulberryParticipant]

Ps I’ve always been convinced that my myeloma had very suddenly flared up as I’d been on a very active holiday only 6 weeks before my initial diagnostic tests.

My lambda light chains were not as high as yours, but I’ve had contact with patients with light chains in 10s of 1000s.

I hope you get your results soon.
Jane

[mulberryParticipant]

Welcome Happybee

I was in a fairly similar position to you almost 5 years ago.
I incidentally had a blood test which found that I had hypothyroidism, but some of the other results were odd. Further tests showed that I had paraproteins and high lambda light chains.

I did not have bone lesions and was unaware of any symptom of myeloma. Tests revealed some minimal kidney damage and a degree of anaemia.

As my myeloma progressed over a few months, whilst these tests were being carried out and whilst I got a second opinion, my thyroid caused increasing problems. Eventually I had half of my thyroid removed and was diagnosed with Hashimotos, autoimmune thyroid disease. Although I’ve not been able to find much in the literature, I believe that for me the inflammatory processes involved in myeloma triggered the worsening Hashimotos, or vice versa.
There is a higher than expected association between autoimmune diseases and myeloma, although no specific autoimmune disease particularly, eg MS, as far as I am aware.

My bone marrow biopsy revealed that I had over 60% myeloma cells in my bone marrow, which is a myeloma defining event and meant that I needed to start treatment. I was diagnosed with IgG lambda myeloma. I have immunoparesis where my non involved immunoglobulins (igA & igM) are low. (I see you have immunoparesis too- at the moment- sometimes this normalises after treatment.)

It is always terrifying to be being tested for myeloma and I hope you get your definitive results soon. As all patients have non-identical presentations of the disease, it often takes a consideration of all the test results, especially the bone marrow biopsy, to determine whether a patient needs to be treated immediately or whether the disease is Smoldering, in which case ‘watch and wait’ is safe.

As I said, I needed to start treatment and had 5 cycles of induction therapy then a stem cell transplant, which has been followed by 4 years so far of pretty normal life without apparent myeloma, “remission”. And once I had had a Complete Response to the myeloma treatment, and my thyroid surgery, I’ve had no further problems with my thyroid.

With best wishes.

[mulberryParticipant]

Currently newly diagnosed myeloma patients are being given 4 drug induction therapy by NHS, which is world class therapy, and changes to the NICE protocol have improved 2nd line treatment options over the past few years. Although NHS patients are not yet given CAR-T therapy, the issues holding it back seem likely to be resolved within months. I feel reasonably confident as a patient that I will get access to world class therapies. I know we patients have excellent advocates in Myeloma UK, arguing our corner to have new drugs approved and agreed.
This does not seem a bad time to return to the UK for treatment.
Despite the pressures that the NHS is under, my experience as a cancer patient has been really positive, especially my treatment by my haematology team.
Personally I would look to move to somewhere within reasonable travelling distance of a regional hospital. Bigger hospitals have more expertise and experience treating this rare cancer and are more likely to have opportunities to get access to drugs trials in the future. You could do worse than look for a consultant, then decide where to live accordingly!
I hope your move back to UK is straightforward, you find somewhere nice to live and that your grandson responds well to his stem cell transplant.

[mulberryParticipant]

Hi Graham

We all feel totally absorbed by the shock of diagnosis for some time, the first thing we’ve thought about in the morning and the last thing at night. But it doesn’t go on like this. One day you’ll find yourself absorbed in something else for a while, and that will mark the point of gradual assimilation of myeloma into your life . Your life will be pretty dominated by myeloma while you are on induction treatment & transplant if you have one, but afterwards Myeloma very much is backstage. And this bit can go on for many years, and is more likely to do so for your generation of myeloma patients with a 4 pronged attack on the myeloma.

The start of treatment is like leaping into the sea off a ledge, the intrepidation is enormous, but you will soon find yourself swimming….

Despite having 4 anti cancer drugs, and others, you shouldn’t experience severe side effects since the drugs are all targeted at myeloma cells, doing little collateral damage to other cells. I didn’t have immediate side effects from my induction drugs, but when I was diagnosed daratumumab wasn’t available, so one less than you, and that one occasionally initially causes immediate side effects of various sorts so you will be ‘kept an eye on’ after the daratumumab and will be at the hospital some time today, eventually emerging with an enormous carrier bag full of drugs, and a confusing list of when to take them!

You will soon be on familiar terms with the nurses (& receptionists) in the day unit, I missed mine when I no longer needed to see them!
With best wishes,
Jane

[mulberryParticipant]

It knocks the wind out of the sails when relapse occurs, especially during induction when you expect the next hurdle to be stem cell transplant. It’s not that unusual to have to have a second line during induction. I’m hoping CAR-T and BiTES will be approved & available in UK soon and that they may offer longer term solutions for us all, but especially for those with the more tricky myelomas.

[mulberryParticipant]

Welcome to the forum MrI am positive, (good name).
I take part in the Rudy study (long term study of rare diseases, all myeloma patients encouraged to join), and as part of this have had periodic COVID testing.
According to this I have antibodies not only from the (now 6) inoculations and boosters, but also from infection. This must have been absolutely asymptomatic, as I have not been ill at all (until I caught a cold after I got the test results back) I was dismissing this, but mentioned it to my consultant who said it’s far more likely that I was asymptomatic than the results were false.

[mulberryParticipant]

It isn’t inevitable that there are side effects from filgrastim, although some patients have some. (I didn’t have any at all). I think that your father should contact his myeloma nurse or another member of his team, his side effects really sound difficult to tolerate, and as he has said, this should be a period, after harvest, when he feels pretty well.

[mulberryParticipant]

With the latest myeloma drugs available to patients in the USA, some specialists there are advising certain myeloma patients not to have SCT, or certainly not to immediately if they have had Complete Responses to induction therapy. I believe that High Risk patients are usually advised to have SCT or tandem transplants (a second 3 months later). Not all the latest Myeloma drugs are available (yet) in the UK and the NICE guidance is to follow induction therapy with SCT if patients do not have other conditions which would make it too risky.
It does feel counter intuitive to have a SCT if you have had a Complete Response to induction, but currently we have no way of knowing HOW deep the complete response is, and SCT is likely to produce a longer period of inactive disease. Although we have to be told all the things that can possibly go wrong with SCT, and few people have NO side effects, most people tolerate it without major complications, and many go on to have second transplants later.

[mulberryParticipant]

Hi Kim,
You could ask your consultant if having MRD testing is a possibility. If you are MRD negative, (so no trace of myeloma in your bone marrow), it may be relatively safe- or absolutely safe- to come off maintenance. If you are MRD positive, you may prefer to remain on maintenance.
Jane

[mulberryParticipant]

I have been discussing with my consultant the relative merits and risks of continuing maintenance in the long term. I’ve now been on lenalidomide maintenance for 3 1/2 years, albeit on a lower dose than standard (5mg rather than 10mg because of low WBC counts).
Trials have shown a risk of further cancers after lenalidomide maintenance. (I don’t think any studies have been done into thalidomide maintenance as it’s not usually given).
However theyeloma XI trial (of 2042 patients) showed a very significant lengthening of ‘remission ‘ from an average of 28 months with no maintenance to 50 months with lenalidomide maintenance. Although the full effect on overall survival is still not known ( for the brilliant reason that so many patients in all arms of the trial are still alive) it’s now clear that those receiving maintenance are more likely to be in the survivors group, so the research team are now concluding that there are overall survival benefits.
There are patients who probably don’t need maintenance, after all there are a few UK patients who were diagnosed two decades ago, long before the current drug options. However until minimal residual disease is measured in clinical practice, our doctors cannot know what our relative benefits or risks of continuing long term maintenance are. Minimal Residual Disease , MRD, is the tiny number of myeloma cells that remain in the bone marrow, even in patients who appear to have had a Complete Response, so have no paraproteins and normal light chains. MRD tests look for less than 1 myeloma cell in 100,000 bone marrow cells. Although this seems a tiny measurement, it seems to be significant- if we are minimal residual disease positive, it’s a stepping stone towards relapse.
I am told that there are no definitive answers yet, but Myeloma XI trial (which closed to patients in 2017) will go on giving us and our doctors statistics and information which will benefit us for years to come.

[mulberryParticipant]

Hi Lottie
What a stressful period you’ve been through, at a time when many of us feel pretty well & healthy. Hopefully that part is well and truly over now.
Many of us end up with a longer gap between harvest and transplant than initially planned, often because of bed availability. There can be quite a gap between end of induction and the transplant without intermediate treatment, (for example I had 42 days with only one dose of cyclophosphamide in this period). Normally it doesn’t really matter if myeloma levels creep up a little, as the melphalan will cause apoptosis and kill it off. However I have heard of a few patients where their myeloma has really taken advantage of delays to reactivate with a vengeance, so your drs approach seems to me to be a helpful “belt and braces” cautious approach to avoid you having yet more stress.
Although it wouldn’t be nice to miss Christmas, it will be nice for you to start the New Year in recovery and able to put all this treatment behind you. I hope that you have a date soon.
Jane

[mulberryParticipant]

Hi Susieq, welcome to the forum, and I hope that your husband is soon ready to be discharged.
You don’t say whether your husband had any prior dependencies before having his SCT, but I’m assuming that he was reasonably fit prior to the transplant (to be considered as suitable for it).
If this is the case my experience is likely to be reasonably relevant.
I was very tired for the first 30 days after SCT and slept alot of the time. I would have found meal preparation difficult and relied on my husband to cook and clean, but I did not need help with personal tasks such as showering or dressing. In these early days I stayed in the bedroom as I slept much of the time. I could eat, but my taste buds were odd and I ate small quantities frequently rather than large meals. I often fancied simple things, not necessarily things I normally ate.
I felt noticeably better by day 35 and was able to resume meal preparation, household tasks and could tolerate increasing exercise until about day 80 when I was desperate to get away on holiday (which we were advised shouldn’t happen until day 100)
Most patients don’t require personal care by the time they are discharged from hospital, but if it seems to you that your husband will, talk to his team that are treating him, and request that a plan is put into place before your husband is discharged. When a myeloma friend was discharged recently (with mobility issues) a care package was put in place with carers going into her home several times a day for the first few weeks.
I hope your husband’s recovery is straightforward, and you can soon get back to enjoying a good quality of life.
Jane
PS your post has tagged on the end of another one, which may mean that it isn’t seen by some forum members.
In future can I suggest that you start your own thread within whichever category you feel best fits.

• This reply was modified 2 years, 7 months ago by  tony642.

[mulberryParticipant]

I hope you have a mild dose, sorry it has spoilt your holiday.

[mulberryParticipant]

Hi Louise, my life as I knew it felt like it had vanished 4 1/2 years ago, it was a very scary time. I wish I’d realised that I even had a chance of feeling as well as I do, I often say I feel like a fraudulent patient now.

[mulberryParticipant]

Hi Louise
We all know & understand the fear factor you are experiencing right now, you are in the right place to get help, although you’ll need more information from the other tests you’re going through.
As others have said, it is very positive that your electrophoresis test did not show a monoclonal spike, it does for the majority of us.
You asked about raised beta 1 and beta 2 globulins. These are 2 of 4 types of globulins made in your liver by your immune system. The beta type has 2 peaks, beta 1, made up of something called transferrin, and beta 2 made up of IgA, IgM & sometimes IgG. These Ig s are very familiar to myeloma patients as most of our cancers are either IgG or IgA (rarely any of the others). I know a little about raised beta levels since I had raised beta 2 levels at diagnosis in 2018. However although raised beta1 & beta2’levels might be found with myeloma, they can also be found in diabetics, so your diabetes may explain this? Also it can be found with a variety of other conditions such as Cushing’s disease, iron deficiency anaemia, kidney disease, and, as I had, hypothyroidism.
I hope this helps, and your results turn out to be caused by something more benign!
Jane

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