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.
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.
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.
Hi Cloudspotter
In myeloma terms, at 70 you are ‘average’ age for diagnosis, so if you do end up requiring treatment, please don’t feel that you are fundamentally unlikely to cope with it, respond to it or benefit from it. (I don’t mean to suggest that your age makes it more likely MGUS will develop into full blown myeloma).
It’s not surprising that you would be worried about triggering worse neuropathy than you are already experiencing, but being aware of it,will benefit you as if you do have any loss of sensation, drug quantities can be reduced. I had drug reductions twice (so to half dose) during induction after some loss of sensation. My myeloma was nevertheless got under control, and I have not suffered permanent neuropathy.
Here’s hoping that you stabilise again with MGUS so you don’t need to try out treatment.
Best wishes
Jane
So pleased that you have MGUS rather than anything else! There is an excellent chance that it’ll remain permanently ‘under the radar’ , I hope so. Jane
Here’s hoping for a steady reduction in your myeloma Dave, I remember it being quite a relief when I started treatment too.
The good thing about phase 3 trials as you are on is that the drug combination has already been tested out in phase 1 & 2 trials, is known to work effectively and the hope is that it’ll be significantly more effective than the current standard care. Now, a few years into treatment, I would/will gladly take up an opportunity to be in a trial, but that’s the benefit of being in the system.
If you get any side effects, do report them. Many of us are reluctant to do so, fearing drug reduction will mean treatment is less effective. However this isn’t the case.
I had one drug reduced twice during induction (not one you are on) but still ended up with a Complete Response & without the lasting damage I could have had.
I also had both a dramatic rise in my liver enzymes & a sudden and alarming skin rash from lenalidomide (Revlimid) & my doctor gave me a short break at the end of the cycle. The rash gradually disappeared and I’m still on lenalidomide (now as maintenance) 4 years later without any recurrence of either.
It’s quite common to get GI issues from the lenalidomide too, especially either diarrhoea or constipation (sorry if this is too much info!), treatment can be given to help either.
Hopefully you’ll sail through this, let us know how you find the trial.
Jane
Good afternoon Robert
Unfortunately I think your question might get overlooked on the forum as it appears within an unrelated thread.
It may be helpful to post it again as a new question. You can do this by clicking on the heading ‘Treatment’, as you did, but then scrolling down the page, where you will see a new question option.
I hope that you get some helpful responses.
Best wishes
Jane
It’s good to hear that you are safely over the SCT hurdle ac and I hope that it leads to a long period of stability when you can put myeloma to one side and fully enjoy life again.
By the way the side effects of the maintenance drug lenalidomide tend to be minimal compared to the induction drug cocktail, and there is evidence of the significant improvement in ‘remission’ times it can give us patients.
Sending you best wishes, Jane.
Obviously we’re not doctors, and myeloma is multi faceted, so all the results need to be looked at in the round.
However smouldering myeloma can have paraprotein levels of up to 30g/l, so 9g/l looks hopeful of a less worrying result than full blown myeloma. The bone marrow biopsy should tell what percentage of cells are myeloma cells . These percentages often sound alarming, but as long as you don’t have over 60% myeloma cells in your bone marrow, you will not necessarily need treatment. The results will also show which proteins are on the surface of myeloma cells & whether you have certain chromosomal changes. This information will be useful as a baseline, whether or not you need treatment at the moment.
Best wishes for tomorrow.
Ree2112, please don’t ever feel that you are boring others. The forum is here to help anyone with myeloma and everyone affected by the disease to cope with it. It helps others to see the breadth of ‘typical’ experience of myeloma, & to look back over the forum at strategies others have used to overcome these hurdles the disease throws at us. We all know that myeloma earns it’s “multiple” prefix in many ways, including the physical, physiological & psychological hurdles we are faced with from time to time.
The SCT looms so large during induction treatment it’s not surprising that you feel a bit lost now it’s not happening straight away. It’s yet another way that myeloma has taken control away from you- even your work plans.
Believe it or not though, things do get better once the myeloma is stable.
I’m sorry to hear this Lottie, but I know other myeloma patients who have had the experience of going to harvest and finding no stem cells. It’s not that uncommon which is why blood tests are done several times during the process. Usually after a recovery period, stem cells are found second time around. I haven’t heard of having a successful day 1 harvest then nothing day 2, but there are so many uniquenesses about
myeloma patient experience, I’m not surprised this could happen.
Usually patients feel pretty well between end of treatment and harvest, I hope the silver lining is a few weeks of feeling ‘normal’.
Best wishes for Round Two.
Hi Marie,
I’m sorry that you have had this stressful news.
Exactly your scenario happened to a friend from my support group, who then had to go through another treatment package. My friend eventually had the SCT earlier this summer, this time immediately after the end of the last cycle without the delay that usually occurs.
I can imagine the yo yo ing of emotions that you’ve had, having psyched yourself up for SCT only to have to go back into induction treatment, and the worry of “what if” again.
I hope you sail through the additional cycles of treatment.
Jane
Hi Marie
When you mentioned what went on in the medical physics department kidney tests, I realised that I had had them. So many tests, they become a bit of a blur.
Hope the results are ok.
Some patients have managed to get precise test results out of their teams by asking them to fill in the Myeloma UK patient diary, or by having copies of the updates sent to the GP.
Jane
Welcome to the forum Dave and to the friendly company of myeloma patients and loved ones, an exclusive club no-one ever considered joining….
Getting this diagnosis shocks to the core, and takes time to assimilate. Initially it preoccupies every waking moment, but gradually that subsides and it becomes just one facet of life. One day you’ll realise that you haven’t thought about it for a few minutes, and eventually that’ll turn into hours.
When I was diagnosed (like you with little in the way of symptoms) and was told that it was “incurable but treatable” I only really heard the “incurable” bit, and believed that I was on a gradual downhill slope. That really is far from the truth for most of us, especially those diagnosed before multiple symptoms. There has never been a better time to be diagnosed with myeloma, novel treatments are being approved several times a year at the moment. Living with myeloma is like being in a steeplechase, long periods of stability and near normal life, with occasional difficult hurdles, either caused by treatment or illness. For example I’ve now had 3 years virtually normal life after a year of life turned upside down with treatment.
It’s difficult being asked to take part in a trial early on in your experience of myeloma. If you do a search, there was a previous thread about the RADAR trial.
BTW be forewarned that Dex is not called the dreaded Dex for no reason. It can easily turn night into day, give you up until now unknown ability to spend money online (one of my friends bought a sports car on impulse)and it can turn the most mild partners into volatile, bad tempered beasts. If it affects you in any of these ways, let your Dr know, sometimes doses need adjusting. Don’t suffer in silence.
Best wishes, Jane
Ree2112 I’m glad to hear that you’re having your kidneys tested, even though I don’t know what that test will entail! Your new doctor sounds through and it can only help to have a complete review of all aspects of your myeloma now. Although I’m very happy with my consultant, I had a new, young doctor for a few months and he organised a scan and a few tests as he noticed I’d not had them for a time, I guess he’d had more time to read through my notes.
Good luck for tomorrow.
