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Hello! I’m Ian, I live in Essex UK, and I’m new here. I was diagnosed with MGUS a little over a year ago, so sort of ready for Multiple Myeloma but didn’t expect it to get this far in a year. But it has.
Now I’ve introduced myself, I’ll go and have a look around, read a few things.
Back later.
A little more about where I’m at. I was diagnosed with MGUS last summer after unusual back pain in the thoracic area – my GP ordered bloods and the results sent me to a haeomatologist who did a CT scan (and an aborted MRI which I couldn’t tolerate without sedation).
That led to 6-monthly monitoring leading to combination of raised paraproteins and free light chains combined with a 6cm “osteolytic lesion” impacting on my left hip and acute pain in the left groin – which may well have been a “pathological fracture”. Another scan showed evidence of more (thankfully smaller) lesions in pelvis, lower and upper spine, and one rib. So Multiple Myeloma diagnosis confirmed early September, and treatment plan developed quickly – radiotherapy to reduce the hip lesion and get some mobility back – my walking had got really bad even with two crutches – followed by VTD chemo (not started yet) and then a transplant. I’m 70 (male), which I thought might put me out of range for a transplant, but the haematologist said “But you’re a fit seventy!”
The good news is that although the lesions have developed quickly, the blood numbers – FBC, calcium, immunoglobulins, paraproteins, free light chains, liver, renal, the lot – are all good and within normal ranges. Hence the decision to put off chemo (apart from a couple of hits of dexamethasone (steroid) until after the radiotherapy. Results so far are promising – paraproteins and FLCs are down, and the left hip is quite a way back towards normal – I no longer need even one stick around the house but still rely on aids outside. OTOH, a few days after the final session I think I can feel the start of the expected wave of post-radiotherapy bone pain starting to arrive. Hope it won’t last too long…
So now in a slightly nervous state as the first round of chemo approaches in ten days time. Just no way of telling how that will go in advance, so got to be prepared for all the things I’ve been reading about. But overall, the main thing is this – the care I’ve had from my GP, then from the NHS at our local hospital, then transferring to private (I’ve been paying out for “Comprehensive Cancer Cover” for years, will probably never get a better chance to use it!) has all been excellent. Couldn’t have hoped for better. So I know there will be trials to come, for me and for my wife, but we’re both approaching them in as positive a way as we can. Right now, I’d just like a couple of nights of good sleep after all that dexamethasone…
I hope your treatment is going well. Keep positive that you’ll be a lot better in a years time- I wish I’d known that!
The real benefit of your private health cover will be immediate access to lenalidomide maintenance after SCT, those of us on NHS have to wait to find out whether this treatment will be approved for us in October 2020! That and not having to spend hours waiting for consultations!
For those who are lucky, SCT is not as bad as we are prepared for- have plenty of ice during the melphalan infusion to stop mouth mucositis, and you may, like me, get away with only a few (3) days of real discomfort.
mulberry, thanks for the encouraging reply. Yes, getting lenalidomide was one of the reasons for taking the private road.
The post-radiotherapy “bone pain” has definitely arrived – what I didn’t expect was the amount of soft tissue pain that would accompany it, which has knocked my walking halfway back to its worst. But that’s starting to improve again and the worst of that stage seems to be over. Now just a week to go until the chemo starts…
I am a 75 yr old male and since May of this year have been receiving treatment for Myeloma. I am now on my third different regime of treatment. The first included thalidomide and left me with periripheral neuropathy. Too high a dose of thalidomide and nobody told me I could argue the dose. Eventually the clinical nurse specialist stopped the thalidomide.
In August I statrted my 2nd regime of cyclophosphamide taken with dexamethazone at home. This didn’t work for either. In September I had 2/3 weeks off treatment and have now commenced with 25mg of lenalidomide taken at home in capsule form. Review is due next week.
Reading comments about having lenalidomide private makes me wonder if I have had to go the two other routes before they will bear the cost of the lenalidomide.
Lenalidomide is available on the NHS as 3rd line treatment, & now as 2nd line treatment- but not as maintenance, even though the UK myeloma X1 trial demonstrated that it improved remission times for those patients who have had SCT. For standard risk patients, remission is an average of 58 months rather than 30 months without maintenance. Overall survival is improved too.
Thank you Mulberry.
I received my 2nd dose of lenaliomode yesterday and a comment from the consultant which indicated I might be on for years.
Roger
Ah Roger, lenalidomide is available on NHS as ongoing treatment for those for whom a stem cell transplant is not suitable . Hopefully you will be on it for years!
I certainly hope so Mulberry because I am not too keen on STC as I know of two sufferers who did not do too well and had complications arising.
To Ian,
I had not heard of radiotherapy as a treatment for MM. I hope it is working for you. There are two of us in this house with cancer, my wife has a a blood cancer called Polycythemia Vera and is on daily chemo taken at home. My daughter is 10 years post lymphoma but it never ocured to us to take out insurance. I think that is very far sighted of you to do that. Well done.
Roger
I may have been a little unclear. The radiotherapy I had was not a treatment for MM itself. It was aimed at reducing the impact a myeloma-related problem in my left hip had on my walking (reduced to a slow and painful hobble on two crutches). It was a 6cm osteolytic lesion and associated “extra-medullary mass” impacting on the left acetabulum (pelvic surface of hip joint). That was, as far as one can tell, the result of the MM in my bone marrow messing up the chemical factors that control the balance between bone-building osteoblasts and bone-destroying osteoclast cells in the bone itself. The destroyers were winning…
After the radiotherapy aimed at that lesion, (and also after 3 courses of 20mg dexamethasone and generous painkillers) my walking has improved greatly. Almost entirely pain-free, I get around the house without needing a stick, and I cope well outside with two sticks or a walker. Have today been on a walk in a local country park over rough muddy tracks and uphill in a way that would have been completely impossible a few weeks ago (using a Trionic Walker 12 – not cheap but worth every penny!)
Because my blood numbers were pretty good, we took the decision to attack the walking problem (steroids and radio) before starting chemotherapy (VTD, began earlier this week, no problems as yet apart from the usual dex-related sleeplessness). The steroids knocked my PP level down from mid-30s to 16, which helped the decision to delay the chemo and try to improve the walking first. Hope that clears that one up.
As for the health insurance, my wife and I have had it for many years and regularly switched providers in search of better deals. A few years ago we ended up with a broker who found us some promising deals and strongly recommended AXA PPP with their Comprehensive Cancer Cover, which he said was “best available”. I’m glad I took his advice, even though I’m expecting to see a “modest” increase in my premium next year. Or possibly rather more…
Hi folks, I find it so interesting reading how other people,s response to treatment differs, I was diagnosed with mm in November 2017, the local oncology/haematology dept where brilliant, as I am not the best of patients, my chemo journey compared to what others describe was a piece of cake, dexomethasone however it’s spelt another drug cycotropic something or other and velcade injections, ongoing zometa and later immuglobin infusions later, the velcade did make my fingerpads slightly numb and the Dex gave me insomnia but only on the night after I took it, I’ve had about 18 months with low counts but now the paraprotines are now starting to rise, which is a little disappointing, unfortunately copd prevents me from having the stem cell treatment, but all is not lost as I seem or my body seems to respond well to treatment, just have to wait and see if the raised count is just a blip, apparently my counts do seem to go up and down, anyone else have this occurrence?. Might I ask, does anyone still travel abroad during or after second line treatment, I seem to struggle to find reasonable travel insurance after first line treatment.
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