Dear Jill
Many thanks for responding to my query. I was not familiar with the Idarubicin that you are now on. Hopefully it will work well for you and keep things under control. Myeloma is such an individual cancer and seems to cause completely different problems for different people. I had 18 months total remission after a 6 month course of velcade, just having the monthly infusions of zoledronic acid to strengthen the bones and Adcal tablets for calcium and vitamin D. I was also fortunate that I didn’t have any problem with peripheral neuropathy, which seems to be quite a common problem for people on velcade. My consultant recommended regular short walks which seemed to help.
I was very hopeful with the lenalidomide, which some people have apparently been taking successfully for years, but the side effects just kept getting worse.
One other thing I probably should mention is that my blood pressure drops quite dramatically the day after I stop taking 4 days of Dex, so the consultant has advised to lower the dose on a staggered basis, over 3 days, which has helped. If you have any similar problems (feeling faint or actually passing out which I have done a couple of times, then it is worth an ask.
I would be interested to hear how you get on with the new medication.
Best wishes Val
I have another 2 weeks before the next hospital visit, so I will see what the consultant has decided.
I had 3 fractured vertebrae and was in a lot of pain on first diagnosis. I had an allergic reaction to the sedative when they tried to do a vertebroplasty without an anaesthetic, so had to wait for a general anaesthetic. 2 of the fractures had compressed too much to inject the cement, but the third one was ok. All three give me very little pain now, though I do still need local anaesthetic patches (from the GP) on my shoulder blades. For me, the op was worth it, but everyone is different. I haven’t had a brace and the GP suggested very gentle physio for posture, which I haven’t actually needed.
Like one of the other posts, I have lost height, but that is a small price to pay for less pain.
Hope it works out for you.
Hi Regine
I was diagnosed in 2017 aged 69. I was initially treated with velcade for 8 months but decided against stem cell transplant as I was borderline age wise and the consultants were ambivalent about it. I don’t seem to rect well to high doses of chemo and have no regrets about refusing the SCT.
I had 18 months of remission, but unfortunately relapsed earlier this year and am now on Lenalidomide/Dexamethasone plus daily stomach injections for deep vein thrombosis.
I have just asked to have the lenalidomide reduced from 25 mg to 15mg daily, as I was becoming very tired, loss of appetite and loss of muscle tone with the higher dose (after 5 months). I have also had the Dexamethasone reduced as that was causing problems with a sudden drop in blood pressure at the end of the 4 days on, so the consultant suggested I stagger the tablets.
The lenalidomide is a long term treatment at it seems that some people have been on it successfully for several years, which is some comfort.
I hope whatever you decide works well for you. It is a shock to be diagnosed with something like myeloma, which I had certainly never heard of, but it does respond very well to treatment and it seems new drugs are being discovered all the time. Myeloma also provide an info pack for newly diagnosed patients and a personal diary, which can be helpful.
Kind regards and good luck
Val
Hi Paula
The main blood tests are for the indicators of high free light chains and paraproteins, which take about ten days to come back from the labs. I’m not familiar with some of the other tests you mention.
I was first diagnosed in 2017. Fortunately my GP had another patient with myeloma, so recognised the symptoms quickly and I started treatment within 2 weeks at a haematology clinic. As I was nearly 70, I refused the stem cell transplant, as the consultants were a bit ambivalent about the long term benefits. I was on velcade for 8 months and had 18 months of remission before a relapse earlier this year.
Last time I was in considerable pain as I had 3 collapsed vertebrae and several fractured ribs, which eventually healed. I had a vertebroplasty (injection of bone cement for 1 of the vertebrae, but the other 2 had collapsed too much to be able to do that. However they are no longer painful and I have no fresh bone damage this time round.
I am now on long term chemo (lenalidomide) plus steroids and my understanding is that I will be on this indefinitely for as long as it works (some people have been on it for many years!)
Hope you find out just what is going on soon, so at least you know and can plan ahead.
Take care Val
Dear Paula there are definitive blood tests for myeloma, which should give you answers soon.
One of the difficulties is that the illness affects different people in different ways, so it is quite hard to diagnose initially.
Hope it all works out for you.
If it is myeloma, although currently incurable, it does respond very well to treatment.
Best wishes
Val
Dear Pauline
Forgot to mention that Myeloma UK provide an excellent infopack for newly diagnosed patients, also a patient diary that can help keep track of what’s happening.
Hope you’re ok.
Best wishes
Val
Dear Pauline
About the only thing I haven’t had is the pins and needles (peripheral neuropathy) and I think that is because we have a dog and the consultant advised me to keep walking, even for 15 to 20 minutes a day, to improve the circulation in the legs. I don’t know whether that would help with you.
It’s good that you have strong bones, though they may put you onto the Zometa (the bone strengthening infusion) in any case, to make certain that there is no bone damage.
Do keep in touch and good luck with everything.
Best wishes
Val
Hi Pauline
I am also 72 and was diagnosed with myeloma in June 2017, like yourself after a period of being unwell and in increasing pain. I was treated with velcade (plus thalidomide and steroids which caused problems so I only took those for 1 month). After 8 months on velcade I was in remission for 18 months, but unfortunately had a relapse earlier this year, so am now on an indefinite dose of lenalidomide and steroids, which will continue for as long as it works (could be several years!)
The two main indicators for myeloma are high free light chains (mine went up to 6,600) and/or high paraproteins (mine went up to 28. Both of these are identifiable from a fairly straightforward blood test. I had three fractured vertebrae and several fractured ribs initially, which caused a great deal of pain, so I was on slow release morphine for several months, though there has been no new bone damage this time round and the chemo has reduced the indicators considerably.
I would have thought that the MRI scan would have indicated whether there was bone damage from myeloma (a kind of honeycomb effect), but the blood test certainly would be conclusive.
It is scary being diagnosed with something that you have probably never heard of – I know I certainly was! The velcade, if myeloma is confirmed, is a weekly injection and I also had a monthly intravenous drip of zoledronic acid, which is a bone strengthening solution that I am still having monthly. I have total trust both in my GP and the medical team at the hospital, but it is best to clarify anything that is said. Is there a friend or relative that could go with you to the next doctor’s appointment, as it is easy to forget just what was said? If myeloma is confirmed, then you should be put onto the system very quickly and your condition will be closely monitored.
The very best of luck with it all and I hope the treatment is as effective for you as it has been for me.
All the best Val
Hi Annette
Have you started the new course of treatment yet and, if so, how is it going?
Hope it all works out well for you.
I may have some bone damage to my hip, so I have had a series of X rays today. Fingers crossed that it’s nothing too bad.
Best wishes
Val
Hi Annette
From what I have read, the daratumumab has a very good response rate, though the infusion seems to take a few hours to administer, especially for the first couple. I think some people at the clinic I attend have been on it and they are checked every half hour to ensure everything is ok.
The very best of luck with it. I will be interested to hear how you get on. As you say we are lucky that new treatments are becoming more available.
Best wishes
Val
Hi Annette
Thank you for replying so promptly – and with such a fantastic response to the lenalidomide! I’m sorry that it is no longer effective for you and hope the next regime works as well as the first.
I am 71 and rejected the possibility of a SCT in 2017, as the consultants were ambivalent about how I would cope with the very intensive chemo at my age and whether the probably 3 months of being unwell would outweigh perhaps a year extra remission.
I hope I have a similar response as you did. The light chains were very high (6600) and I was very anaemic, but the blood tests are showing that things are moving in the right direction, which means that there is less room for the nasties. I’m not sure of the paraprotein level, but think it was around 17.
I think I have been put on a high dose initially to tackle the MM as quickly as possible, so that I don’t have any more bone damage. I suffered 3 fractured vertebrae and several fractured ribs 2 years ago and had a vertebroplasty for the one vertebra which hadn’t compressed too much. I lost height and I am losing weight at the moment, but eating ok so I’m not too worried.
