Hi, I was diagnosed last month. The diagnosis was SMM but the doctor is starting a treatment with Zometa (zoledronic acid). Do anyone has had that type of treatment?
I read that SMM should not be watched and no treated but I am confused why the treatment? Is it because I am high risk? Any help!!
Many thanks
Thank you everyone for your helpful replies to my post about IRd treatment.
Thank you @bernard for the advice on managing dex and for explaining that the high dose at the beginning of treatment can be lowered if all is going to plan.I agree with you that the thought of being on permanent chemo has been a shock for me too. I was never offered maintenance treatment between transplants so I have been fortunate to have two blocks of drug-free years, apart from Zoledronic acid infusions. That’s great you’re on your 7th cycle and I hope all continues well for you.
Thank you @alanr for the encouragement about your light chains responding so well to the IRd. Thats amazing! My consultant hasn’t mentioned my light chains this time round – I think for me it will be about the paraprotein counts reducing and I have a high percentage of abnormal plasma cells in my bone marrow – but of course that can only be monitored by having bone marrow biopsies (not such fun). That’s also hopeful that you haven’t found your sense of taste affected as I did not enjoy that metallic taste caused by some previous treatments. I hope your light chains will continue to go down.
Congratulations @janw on approaching your 13-yr anniversary! That is really encouraging to hear. It sounds very hopeful to me that the IRd has been keeping you steady for 5 years so far and long may that continue.
I’m also encouraged to hear @kh0305 that your side-effects have been less troublesome than those from DVD. I had DVD before my transplant so I remember what those are like!
Sorry for the long message. There’s a problem in my local clinic so I haven’t actually been prescribed the treatment yet and I’ve been busy chasing that and haven’t logged into the forum since my post. I really appreciate all these responses. Thank you 🙂
Hi Dave
Sorry to hear about your reaction . I also had the zoledronic infusion 2nd week 1 st cycle and I think due again soon. I am unsure which medication causes me the side effects. I hope you are soon feeling more yourself , I am also week 2 of 2nd cycle tomorrow. I am hoping things keep getting easier , we’re nearly half way there.
All the best.
Hello everyone,
I’m also on the RADAR study, week 2 of cycle 2. Cycle 1 was rough for me due to a severe reaction to Dexamethasone, my Doctor halved the dose to 20mg for cycle 2, the first week of which was much better. Unfortunately on the first day of week 2 last week I had a Zoledronic Acid infusion, this had knocked me out for the past 3 days, very much like flu but without the high temperature. Not sure I’ll be having this again any time soon!
Best wishes to you all,
Dave
Hi,
Just came across this post – had similar experience.
Treatment: VCD (Velcade Cyclophosphamide Cyclophosphamid)plus four 4 weekly Zoledronic Acid since initial diagnosis August 2021. At present in to cycle six of eight.
Both my partner and I contracted a really nasty infection (cold from my Grandaughter?).
My very first symptom on 1st Dec. Suffered the expected nasty coughing and normal congestion through until the beginning of Jan. I then had an ear infection, which left me with what feels like a block left ear, and seems to be fluid/congestion in within my ear/and cavities. Have been treated with Antibiotics which cleared the infection – but now have very similar symptoms as you.
Feels like blocked ear.
Seems to improve in the morning, but returns once standing again
Balance can be impaired
Crackling sound in the ear
Have been given Steroid Ear Spray – to no avail, and then Steroid nasal spray.
We know the infection was nasty since anecdotal evidence locally, and the fact that my Partner suffered worse than usual, and took longer to recover.
General opinion seems to be it can take 8 weeks or more to clear (if you’re unlucky?)
Mine has slowly improved, but has been with me now for 9 weeks, and off to discuss this with my GP in the next few days.
I hope your clears up much quicker.. but also that this might help allay any nagging worries.
Sensible advice time: do consult your Doctor if worried; mine is simply a layman’s view!
Roger
It’s helpful to find this thread. I’m on low-dose Lenalidomide since SCT last September, and had my first Zometa infusion 3 weeks ago. No apparent side-effects, but about 17 days after the Zometa my sternum area felt a bit bruised; the discomfort has slowly increased over about 5 days, and has spread a bit to other areas – left hand, lower spine – so that movement is a little more limited. I thought that I might have lifted and swung my 2.5 yr old granddaughter a bit too much! I’ve paused my daily physio routine because I feel too uncomfortable (how beneficial was that, btw! – fantastic PRiSM department at UCLH).
I’m about to contact my nurse about it, but am somwehat reassured meanwhile that this can be a side-effect, and might ease. So, thanks for the posts, folks. (Got my eye on the unused morphine that had helped me through the first agonising month or so back in Nov 2019, but hope that I don’t have to resort to that.)
I noticed another post (#118839) from John “Side effects include flu like symptoms and bones aching to begin with but in the end get better.”
Miles
Anonymous
Hello everyone,
I had the Oxford AZ vaccine in mid February. I had a temperature for 36 hours, a mild headache and fatigue for about 3 days. It’s frustrating that there is no real way (yet, that I know of) for measuring the effectiveness of the vaccine in those of us living with Myeloma but it does feel vaguely comforting to have had it. I think it will feel better still after the second dose in early May.
At the time of vaccination, I was not on any active treatment – just Zoledronic Acid infusions – but I had my second SCT in back in July 2020 so my immune system is still trying to find its feet.
Tomorrow I have an appointment with my consultant and I’m hoping he will give me guidance on what the end of Shielding might look like i.e. will there be a lot of difference in what it will be safe to do? I am suspecting that summer may be more sociable outdoors and that a more reclusive life will be necessary in the winter until the virus is maybe completely eradicated.
Has anyone else been given any good advice?
Best wishes to all for getting vaccinated,
Rachel
Anonymous
Hi Pippy,
Myeloma seems to vary so much between individuals, perhaps more than with other types of cancer, which is what makes it so confusing, I think. My personal experience is not to have had any maintenance treatment following transplants, as follows:
I have had two SCTs (2012 and 2020). The only treatment I have had in between is Zoledronic Acid/Zometa infusions, usually once a month. These are currently on hold because of the pandemic situation.
My consultant said he thought this would be best for me as he explained sometimes if you stay off maintenance treatment then you respond better to the next line of treatment when you relapse. As I was only 50 at the time of diagnosis, I think he was planning for the longterm, as much as is possible. I was and am happy with this as I really enjoy the quality of life of drug-free remission.
My response to DVD treatment last year was in fact better than my response to the initial CDT treatment in 2012. I have also achieved ‘Stringent Complete Remission’ from this transplant instead of ‘Very Good Partial Remission’ just after the first one. This was sixth moths ago – I have just had my post SCT vaccinations today!
So the experience of your relative sounds ‘normal’ to me however everyone seems to have such different experiences. I hope they will continue to make good progress.
All the best,
Rachel
Anonymous
Hello Myeloma2016,
I had my first SCT in January 2013 and went into Complete Remission before the end of the first year and had my second SCT recently in July 2020. My first relapse started in April 2018 but the paraproteins increased very slowly so I didn’t have any further treatment until DVD in January 2020. I did not have any maintenance treatment but I did have Zoledronic infusions every month until they were paused during the first wave of the pandemic. It’s so incredibly different from person to person but I always found it helpful to search out the encouraging stories on this Forum and hold onto those.
All the best for your recovery,
Rachel
Anonymous
Hi Paul,
That sounds quite encouraging about the Dex injection so I hope that bodes well for you for the rest of the treatment. And yes – avoiding cannulas is a big advantage! I had a line for my DVD treatment but now it’s been removed I’m back to cannulas for my Zoledronic Acid infusions. People with Myeloma so should be born with nice big veins but I have tiny wrists and I definitely wasn’t!!
All the best,
Rachel
I am a 79 yr old male diagnosed approx 18 months ago with Stage 2 lymphoma/myeloma (IgG light chain) with ribcage lesions and a small pulmonary embolism. I received 8 cycles of Velcade, cyclophosphamide /dexamethasone and Zoledronic acid. Approx. 9 months ago I developed bronchial pneumonia and was hospitalised for 7 days whilst undergoing treatment with antibiotics. I responded well and I am currently now in ”remission” (hamatology status ‘normal’). But more recently, I have developed painful changes (pins and needles )in both heels and more recently quite severe spasmodic pain in my left foot which fits a decription of planar fascitis. This comes and goes unexpectedly and the pain prevents sleep. It only partialy responds to morphine / paracetamol. I would value hearing from anyone with similar painful condition presumably a consequence of a peripheral neuropathy. My consultant has not, so far, been able to suggest any other analgesic treatment.
I am a 78 yr old patient diagnosed, approx 18 months ago, with IgG light chain myeloma with rib cage osteolytic lesions and a suspected small pulmonary embolism.I am currently ‘in remission’ after 8 cycles treatment with Velcade, dexamethazone and cyclophosphamide. Last August, after stopping all treatment, except zoledronic acid, I developed a continuous dry cough, acute breathing difficulties and a mild temperature. This was months before anyone thought of Coronavirus. I was admitted as an inpatient during which I was administered passive oxygen and i.v. antibiotics. The condition resolved and I was discharged after 7 days. I recently received the official NHS letter (via my GP) stating that I am considered at very high risk of severe illness should I contract the Coronavirus and that I should impose strict sheilding. I take ‘severe illness’ to mean severe pulmonary distress requiring respiratory ventilation and with a high probability of a terminal outcome. Recent statements in the media by senior medical authorities have suggested that active ventilation (machines) will be reserved for patients who are likely to benefit the most ( younger, fit and with no significant disease) and are most likely to survive the viral infection. I cannot see that a patient with my history would qualify. I am beginning to think that should I contract COVID-19, I will probably wish to decline hospitalisation and be treated at home with simple palliative/terminal care and hopefully have some final contact with my family. I would welcome comments from any other myeloma patient facing a similar dilema.
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.
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
Dear Myrna
Thank you for posting on the Myeloma UK Discussion Forum. I am sorry that you haven’t had any replies to date. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.
Some anti-myeloma treatments, alongside some supportive drugs such as zoledronic acid (Zometa®) and indeed the myeloma itself may have an effect on the kidneys, and kidney function is monitored routinely in myeloma patients here in the UK.
If your husband’s myeloma is currently stable then his doctor (haematologist ) may decide to stop his zoledronic acid and restart it again if necessary at some point in the future.
I’m not aware that diet can improve kidney function – although it is generally a good idea to have a healthy well balanced diet where reducing salt intake may be better for the kidneys – but I do know that it is very important for your husband to try to drink 2 -3 litres of fluid per day – this will go a long way in helping keep his kidneys flushed. However, that alone may not be as effective as dealing with the cause of your husband’s deteriorating kidney function.
Here is a link to one of our publications which may be helpful: https://www.myeloma.org.uk/information/myeloma-uk-publications-list/symptoms-and-complications/myeloma-and-the-kidney/
If you have any further questions, please feel free to email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen
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This reply was modified 6 years, 7 months ago by
ellen.
