[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 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

[mulberryParticipant]

Hi Sunflowers
In UK SCT is seen as standard treatment for ‘younger’ patients, but that isn’t the case now in USA. There many myeloma experts believe with all the drugs available now to treat myeloma that SCT is unnecessary. SCT has worked for many patients for many years, prior to any of the other treatments, but it isn’t without drawbacks, such as damaging the bone marrow, which also have long term consequences.
The risk/reward balance is changing, certainly in USA, and in UK NICE & the NHS havenot been slow in approving these same drugs in recent years.
The consultant in Nottingham will have been an expert in SCT specifically. He or she will have been looking at your best interests when saying that SCT is too risky for you. It may be a few years ago that he or she would have drawn that line differently, but now with currently available drugs, you are likely to live longer & better without SCT.
I think I’m right in saying that most UK myeloma patients don’t have SCT, often because patients are considered too old, but sometimes because of other medical complications.
It must have taken the wind out of your sails, to be told No to SCT when you expected to hear dates.
Myeloma seems to do that to many of us, throwing curved balls of one sort or another, which is very unsettling and increases our sense of powerlessness.
A number of people in the myeloma group I go to have not had SCT, one because of a previous stroke. I hope someone comes on here who specifically can answer the questions you posed.
Best wishes for your new treatment plan.

[mulberryParticipant]

Hi Hoffgrad

Firstly this forum is for anyone who has, or thinks they may have, any of the monoclonal gammopathies, from MGUS through to myeloma to plasma cell leukaemia.

Many of us have had to argue for initial testing, these diseases are not well known by GPs, who will typically only come across one or two cases in their careers, so it’s not uncommon for people to have repeated GP appointments before being referred to haematology. Many of us have had to become quite assertive and have had to be self advocates.

It is possible for MGUS to precede other conditions, including chronic lymphocytic leukaemia (which might tie in with the night sweats which are less characteristic of myeloma) and Waldenstroms Macroglobulinemia which is a type of lymphoma (which would tie in with IgM involvement, which is rare in myeloma).

Any results outside normal limits are by definition “not normal” and should be followed up. However I hope its reassuring that active disease usually involves levels very significantly outside normal levels.

Although it should not be necessary, some people have resorted to having an initial private haematology appointment if they feel they are getting nowhere with their GP. If you need subsequent treatment, patients can slot back into NHS.

[mulberryParticipant]

Good morning Cloudspotter, it’s good that you now have some answers and a plan for treatment is being devised.
I was anaemic and had low vitamin B12 levels when I was being tested for myeloma.
I benefitted from cyanobalamin for the B12, I had this as a series of injections initially, then 3 monthly injections, then no treatment, but now have it prescribed in tablet form. For me, without any supplementation it gradually goes down under the minimum ideal level, although this took about 9 months to happen. I find B12 gives me ” the feel good factor” so it’s definitely worth having if your levels are depleted.
In terms of the anaemia, I was treated with iron initially, until my cancer diagnosis. It seems that iron supplementation isn’t a good idea if you have an active cancer (malignant cells will readily use the iron). For me the anaemia was an intrinsic part of the disease, ie anaemia of chronic disease, rather than low iron levels. The anaemia lessened as a result of treatment of the blood cancer.
I hope this is helpful, & best wishes with your treatment.

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