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.
As you say Mariposa, we have all been through this terrifying route of discovery.
These weeks ahead will seem an eternity, until you know the details of what you are facing.
Despite everything, myeloma is actually pretty slow growing, so you have time on your side for your doctors to investigate all likely aspects and complications of myeloma and associated conditions, to work out exactly what is going on, and to assess whether treatment is advisable now.
The scans should show any bone lesions, 80 % of us have lesions at diagnosis, and will show whether they require additional treatment.
The bone marrow biopsy is not pleasant, but is better if the performing doctor leaves the local anaesthetic for 5 minutes or so to work. If the doctor is reluctant to do this, I ask for gas and air. I don’t know why this isn’t offered, as it makes the whole procedure much more bearable.
The results are really useful, although to us patients they can be alarming. Some myeloma patients have over 90% myeloma cells in their bone marrow (how we function like that I don’t know). The biopsy should also check which proteins are evident on myeloma cells- most of us have quite a variety present, of a wide possible range. This ‘FISH’ tests gives drs information about the starting point of our myeloma, and the degree of ‘risk’ (statistical treatability).
Do let us know how you get on.
Jane p
Hi Linda
I had my velcade dose reduced twice during induction as I was experiencing ongoing numbness in my toes. Complete feeling returned, and my feet have been fine since I stopped taking velcade at the end of induction.
Hope it’s the same for you.
Good luck with harvesting- painless luckily!
Jane
Hi Jo
I have been taking lenalidomide as maintenance since I had my SCT. I don’t have high risk genetics, but it makes sense to keep myeloma at bay for as long as possible. I won’t be able to use lenalidomide later, but there are already new drugs available on NHS since I started lenalidomide maintenance over 3 years ago, and I’m hoping that there will be even more effective treatments available by the time I need them.
Maintenance does extend progression free survival (myeloma XI trial results) and although overall survival differences are pretty difficult to assess in these days of so many different treatments and changing protocols, I personally feel it has benefited me psychologically to have maintenance; I have done all I can to keep the beast at bay. I am surprised that your husband’s doctor sounds like he is sitting on the fence. Have you thought about getting a second opinion?
Best wishes, Jane.
