Hi Ruth
It sounds as if you are having a proper full, non urgent assessment of your monoclonal paraproteins.
It has long been known that some people have a pre cancerous condition called MGUS Monoclonal Gammopathy of Unknown Significance and live perfectly long and healthy lives without it progressing. A long term study of the whole population over age 40 in Iceland (called IStopMM) is demonstrating that this is more common than previously realised, as it is only found incidentally.
However it’s now believed that everyone diagnosed with multiple myeloma, or it’s immediate precursor form Smouldering Myeloma, will have had MGUS first. And it is possible to develop Chronic lymphocytic leukaemia (CLL) rather than myeloma from MGUS.
This is a period of significant improvement in treatment for myeloma, so there is sometimes a risk/benefit assessment to be made about when to start treatment. In any case, only 1% of MGUS patients a year reach levels of Monoclonal Gammopathy that are going to cause end organ damage and therefore require treatment.
Currently you will be being assessed to see if you have any significant “CRAB” features, that is high Calcium in your blood, Renal (kidney) damage, significant levels of Anaemia or Bone lesions.
Any of these are significant findings, but only bone lesions actually trigger treatment unless either you have a high paraprotein level (with IgG this is over 30g/l) (some people have different immunoglobulins causing problems or no paraproteins but light chains). If you have a fairly high level of paraproteins this should or could also trigger a Bone Marrow biopsy being done to estimate the total infiltration in your bone marrow. A figure of 60% or greater of myeloma cells in your bone marrow would trigger a diagnosis of active myeloma.
The beta 2 microglobulin level is used in staging myeloma, and is often raised, but at your level doesn’t seem exceptional to me as another patient.
I would really warn you against Google searches at this stage. So much information especially about prognosis is seriously out of date. Reliable information can be found on the Myeloma UK website, Healthtree Myeloma (a US site set up by a patient) and International Myeloma Foundation. Best in terms of NHS treatments is if course the Myeloma UK site.
The myeloma patient who started our local support group has now entered her 20th year of living with myeloma, and although this isn’t yet usual, with the latest treatments becoming available, it will become more common.
Best wishes
Jane
I’m glad to hear that your second dose of zometa was easier, and that you are getting your pain checked out.
Many people with myeloma (& associated conditions) have to become quite assertive over what they want from their doctors. A good Dr will explain why something is not necessary, if it is not. It is important that you ‘go with your gut feeling’, you are your best advocate.
There is an American woman living in Italy called Margaret who has written a health blog about living with Smoldering Myeloma for nearly 20 years that you may find interesting. It is called Margaret’s Corner and you should be able to find it by doing an internet search.
Welcome to the group Phil and to the wider Myeloma community.
It’s always a profound shock getting this diagnosis, but most of us go on to have lives well worth living, and with new treatments being approved regularly the prognosis for each of us is better than it ever has been.
You are statistically average age for diagnosis, so hopefully you will have a long life with this disease. I feel it’s like a steeplechase, long periods where everything is straightforward, but occasional hurdles to cross, of one sort or another.
Treatment can initially make patients feel worse, & it’s important to report any even small side effects like peripheral neuropathy, but many of us can get back to a pretty normal life, recognisably the one we had before.
When I started treatment I assumed the preoccupation with myeloma, the toll treatment was taking physically and mentally, was the new normal, would more or less go on forever.
However once the myeloma levels had stabilized and my induction treatment (& in my case SCT) were over, I returned pretty much to my old life, and it stayed this way for over 4 years.
My advice to your father would be to expect myeloma & treatment to take over his life for around a year from diagnosis, but to look forward to a long life beyond that when myeloma will be in the background rather than centre stage.
Very inspiring experience, not just for those newly diagnosed but for the rest of us who haven’t responded as well as we had hoped.
Thank you for posting.
Jane
I think it’s inevitable that we all are very aware of how we feel, aches and pains can’t be dismissed in the way that they were prior to diagnosis. I wasn’t aware that I had anything wrong when I was diagnosed with active MM. I’ve certainly sought medical advice about bone pain quickly since, rather than waiting to see whether it gets better/worse, and have ended up having two scans over the past few years, which showed arthritic changes/disc compression rather than myeloma (thank goodness). My Dr & the hospital haven’t suggested that I’m a hypochondriac, nor that I’m setting the bar for getting medical opinion too low, so it seems they prefer to over test, than risk missing disease progression.
best wishes
Jane
Hopefully that’s what it is. I had a Morton’s neuroma which is a similar foot problem diagnosed last year, nothing to do with myeloma. Mine responded to an injection and is fine now, the only problem was waiting for the treatment. I hope your husband’s problem is resolved. I’d always raise other medical issues with the myeloma team, we don’t necessarily know that symptoms are not myeloma related.
Best wishes
Jane
Welcome to the forum.
I’m sorry to hear that you have to live with the worry of a Smoldering Myeloma diagnosis, especially at such a young age.
I hope that you continue to smolder, without it ever progressing to active myeloma.
The more myeloma is tested for, the more people are found to be living normal, healthy lives with asymptomatic MGUS and Smoldering Myeloma. The evidence for this is being seen in Iceland’s IStopMM study, testing all willing adults over 40.
Although everyone with active myeloma will have had, (whether they knew it or not) MGUS then Smoldering Myeloma, not everyone progresses to having blood cancer. I hope that proves to be the case for you.
One of the most damaging things that myeloma does is to disrupt the normal cycle of bone resorption and bone replacement (osteoclasts and osteoblasts) which leads to bone lesions in 80% of myeloma patients.
Zometa is a bisphosphonate, not an anti myeloma drug, but it strengthens bones, in effect disrupting the disruptive cycle.
Zometa remains in the bone (to some extent) for up to 10 years. It will offer your bones a good degree of protection from myeloma related damage. It’s not a totally benign drug, & some patients have suffered a nasty osteonecrosis of the jaw, where the jaw bone flakes pieces off, which then emerge through the gum. However most of the affected myeloma patients have had many more doses over a much longer period, than patients diagnosed in recent years will ever have. (Now that this association is understood).
I found it helpful to drink plenty of water before and after having zometa as the infusion gave me a (short term) metallic taste in my mouth.
Best wishes
Hi Grandmat. I think this is something your husband should talk to his Dr or myeloma nurse about. You have raised his problem on a thread about pins and needles in the feet, which suggests he may, or you think he may?, have peripheral neuropathy.
It is important that this is ruled in or out by the team treating your husband.
When I started getting loss of feeling and pins and needles in my feet, which happened twice during my treatment, my Dr reduced my myeloma drug (Velcade) on two occasions. In my case I was lucky that my peripheral neuropathy cleared up quickly. I know other patients with peripheral neuropathy where recovery has been gradual over a long period.
Menthol cooling cream, chilli heating cream, compression socks and revitive type stimulating foot machines have all helped members of our local support group who have peripheral neuropathy.
If your husband hasn’t got neuropathy, he’s clearly got a problem that equally seriously needs to be addressed. I’ve found my myeloma Dr has been good at signposting me or referring me to the right person when I’ve had an issue which isn’t related to myeloma.
I don’t think myeloma patients are being paranoid or hypochondriacal when we worry that pain may indicate return of active myeloma.
There are 2 types of relapse. Biochemical relapse is the more common, which is identified by blood results, but it’s also possible to have biological relapse, evidenced by CRAB features, most frequently new bone lesions/pain.
Personally I’ve had scans on 3 occasions during my ‘remission’. My consultant hasn’t made me feel unreasonable wanting them, although nothing myeloma related was found. The final one turned out to be at the point just before blood tests revealed my relapse, so actually it was really useful to have had the scan.
I wouldn’t feel properly reassured by a nurse saying blood tests are ok therefore you can’t be relapsing. I hope your Dr is as pragmatic as mine and arranges testing.
We patients HAVE to listen to our bodies.
I hope your dad starts recovering. It’s clearly a very worrying time for you. Many of us are initially very poorly, fortunately most of us pull through. I hope your father has had his MRI now so the extent of his bone issue is known so that a treatment plan & effective pain management can be put in place.
I’m sorry that your mother is having such a terrible time with myeloma bagpuss.
Is she being treated at one of the regional (bigger) hospitals? If not it may be worth asking for a second opinion to be sought.
DRT is a combination treatment given to older, frailer myeloma patients (Daratumumab, lenalidomide & steroid), however there are side effects. What trial treatment was your mum on? If she couldn’t tolerate those side effects, her team presumably believe she wouldn’t tolerate DRT side effects.
It would be helpful for you to know her team’s reasoning so that you understand, this may possibly include that your mother’s myeloma is slow progressing, if it is.
That’s a good reduction of paraproteins in one cycle morwenna, I was told 30% is excellent.
The total reduction is likely to reduce each cycle, but the aim is to get to zero paraproteins, or as near as possible to that, before SCT. I think usually is under 3 or so, but there are exceptions.
Hi Jmorris, I haven’t had Dara yet, (due to start as second line treatment next week) but I believe it’s normal to have reactions especially to the first treatment. When I had Velcade as induction I had a significant skin reaction at the site of the injections, so I ended up with a line of fading red circles that lasted (what I remember as) months.
Welcome to the forum zozo0921
It’s always totally traumatic when a family member is diagnosed with myeloma, and many patients have serious health complications when they are diagnosed. Fortunately for most of us, our health improves as our myeloma levels reduce during treatment.
Mobility problems are common as 80% of us have bone lesions at diagnosis, often in the spine. Although the bones never return to normal, gradually the lesions scar over and pain either goes away, significantly reduces, or a successful pain management is put in place.
One of my friends was in a wheelchair for 6 months after diagnosis. She has since been digging an allotment, gardening, leading a walking group. For the past 18 years she has been very active.
Keep hopeful for your father.
Best wishes, Jane
