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
-
This reply was modified 8 years ago by
ellen.
Hi. I was diagnosed with Multiple Myeloma in July this year and like all who go through this first consultation was absolutely gutted and didn’t really hear the next hour. The biopsy that morning confirmed the consultants early views and within a week started Chemo. I have completed cycle 2 and start 3 next week. My blood test show an excellent results and am told that with this improvement I will stay on Chemo till the end of the year, with monthly Zoledronic Acid infusion.
All is going well. I’m 75 years old but up till this Myeloma set in I was very fit, Biked, lots of Golf, Gym and a great deal of gardening to keep up with. Although I still have lower back ache I have started walking again trying to regain my fitness. I am still finding it hard to come to terms with all thats happened and am very frightened for the future, clinically I may not be offered SCT that seems to be one of the main topics of discussion groups and forums.
In closing I must pay tribute to my Consultant, Clinical Nurse Specialist and all the clinical staff who have been so wonderful over the last weeks. I’m sure without themI do not see how I would have got through this period. A bit of good cheer and encouragement from the forum will really help.
stjohn
Hello
My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK. I am sorry that no-one has yet replied to your post, and I am sorry to read of the difficulties your partner has experienced.
I wonder if you and your partner have had an opportunity to reflect on the experience with his doctor (haematologist) or the team? Whilst it is always possible for an individual to have an adverse reaction to a drug, and the drug I believe he may have been on (zoledronic acid?) can have an effect on kidney function, there is also the possibility that some of your partner’s experience was a combination of this and other issues (for example he may have already been developing an infection and this may have contributed to the overall situation). Either way it is clear that you and your partner will want to understand what the team think happened, and what might be done to minimise the chances of a repeat experience. Please do ask for a consultation if you haven’t already.
With regard to the ‘kidney medication’ being stopped after one cycle I believe you may be talking about the drug allopurinol? This drug is usually given for the first cycle of treatment and then stopped. It is given to help the kidneys to process waste that is generated as the myeloma cells are destroyed. The reason it is usually only given for the first cycle of treatment is because this is when the ‘bulk’ of myeloma cells are destroyed. In subsequent cycles of treatment the waste generated is less and this drug is generally not needed.
I hope this has been helpful. If you have any further questions, please feel free to email directly to askthenurse@myeloma.org.uk or alternatively if you would like to talk things through please call us on the Myeloma Infoline on 0800 980 3332.
With best wishes
Debbie Gardiner
Myeloma Information Specialist
Hello
I am new to this, so please bear with me. I was diagnosed in August 2014, started chemo (CTD) in November 2014 and finished in August 2015. My paraproteins are now less than 1 (from 30) and my light chain ratio is good.
Am I right in thinking that part of the treatment should be regular scanning of bones, CT, MRI or x-ray to determine the progression of the disease? I have read your comments below and I too, only had x-rays before my chemo. How does one know how much our bones have been affected…I have asked my oncologist if I could have an x-ray to see what’s going on and his answer was ‘it won’t show up on an x-ray’….so why on earth did I have a full skeletal in Aug 2014 as part of the diagnosis?? I think this may be cost-cutting…..
Also, do I need Zoledronic infusions every 4 weeks as I do at present.
I am 65 and fit, and very well apart from having been diagnosed with this wretched disease!
I look forward to any responses and best wishes to you all…..Cheryl
Hi Mavis.
Thanks for your reply.
My consultant has done a great job with me and I believe that it’s standard practice to stop the bone strengthener treatment after a set period of time. However, it does seem like a coincidence that the withdrawal of the Zoledronic acid (Zometa) treatment and my subsequent relapse are indeed linked. I don’t know if this is the case but it certainly seems suspicious and will be asking my consultant directly about this next time I see her.
I’ve done some digging on the internet about this and worryingly read that “…the risk of progressive bone disease as a result of BP (bisphosphonates (such as Zolmeta)) discontinuation is a major concern“. See the attached document for the full breakdown.
That said, I would like to know if anyone else has suffered a relapse after finishing their bone strengthener treatment?
All the best with your remission.
Hi Annette,
My nails are very short now. I can remember when I had my daughter that my mum told me to cut my nails because I might scratch her, I don’t think I did cut them and I am sure I didn’t scratch her either.
The medication I am on is a bone strengthening drug called Zoledronic , bladder control drug called Solifenacin and I am taking Turmeric as well.
Janet X
After being given a prognosis of 18-24 months to become active, My slumbering myeloma suddenly woke up in March – three months after original diagnosis!
I started treatment this month and am now half way through the firs of, probably, 6 or 8 28 day cycles. I am on Zoledronic acid (IV once per cycle), Dexamethasone, Cyclophosphamide and Lenalidomide. So far no material side effects, in spite of the dire warnings in the drug packaging!
I am sorry that no one, as yet, has replied to your post; I hope this won’t put you off posting on the Forum in the future.
Unfortunately bone damage, fractures and pain are common problems in myeloma. Patients who are receiving treatment for their myeloma should also be on a drug to protect their bones, to reduce calcium levels and to help with pain. These drugs are called bisphosphonates and whilst they cannot repair damage that has already been done, they go a long way to preventing future damage and fractures. The bisphosphonate most commonly prescribed is called zoledronic acid (formerly known as Zometa) but there are others as well..
It may still be possible for your mum to have surgery for her fracture; however, there may have already been a degree of healing to the area which might make this quite difficult. A referral to an orthopaedic surgeon may be necessary – they would be able to determine if this was still possible after such a length of time.
Myeloma UK produces an Infoguide which tells you a little more about myeloma bone disease, you can download it from this site or, alternatively, I could post one out to you.
I hope this has been of some help, but if you have any further questions, would like to talk things through or would like to receive the Infoguide I mentioned, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen
Hi All,
I hope that no one takes offense at this post as it is not intended to offend anyone, I am wanting advice
My mother has recently been diagnoised with Myeloma has has started her treatment today, she has always been a well woman and takes pride in her appearance. What makes her feel better is knowing that she looks well and because of this she uses sunbeds just once a week.
She has started CTD chemotherapy and Zoledronic acid treatment and is wondering if she can still use the sunbed, once a week max or is she better using fake tan.
Like I said I do not mean to cause offense or upset anyone just looking for adivce
Back from infusion of Zoledronic acid. Painless really, just sat in a chair while saline and the zoledronic dripped in. Took more time than necessary today because i should have bloods done before hand. Am told will only take an hour next month.
The infusion should help to fill in the holes in the bone so reducing the risk of breakage. Staff really nice, cups of tea and coffee while infusing. Cakes as well but as I have Coeliac disease I had to recline.
Side effects include flu like symptoms and bones aching to begin with but in the end get better.
John
Dear Ian
I am sorry that no one has yet replied to your query; it may be that no one has had a similar experience. I hope you don’t mind if I try to clarify things for you.
It is common for myeloma patients to have raised calcium levels (hypercalcaemia) and this often occurs as a result of myeloma bone disease which causes calcium to leak into the blood stream. Hypercalcaemia can affect the kidneys and can cause other complications so it is important that the levels be kept under control. This can be done with intravenous fluids and bisphosphonates drugs such as zoledronic acid (formerly known as Zometa), Pamidronate or the oral tablet Sodium clodronate. If the intravenous bisphosphonates are used your kidney function will be closely monitored as they can also put the kidneys under added stress.
We do provide booklets on both Myeloma and the Kidney and Bone Disease and Bisphosphonates which can be downloaded from this site, or if you would like me to post them out to you then please do let me know.
I hope this has been of some help, but please do not hesitate to get back in touch if you have any further questions or if you would like to talk things over. My colleagues and I can be contacted directly by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline 0800 980 3332, which is open Monday to Friday 9am to 5pm.
With best wishes
Ellen
-
This reply was modified 11 years, 1 month ago by
webteam.
