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
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This reply was modified 9 years, 7 months ago by
webteam.
Hi, this is the first time I have used this forum, so please forgive me if I am posting in The wrong section.
I was diagnosed with AMM in November and have been having treatment of Zoledronic acid, every 8 weeks. All my calcium, para protein levels and kidney function is normal. So my consultant is pleased with this. My MRI showed no bone damage either.
My problem is pain in my right groin area which today when walking home turned into an immense pain going down my front thigh stopping at the knee. They were short shocks, but have been having them all day, and literally stop me in my tracks.
my question is does anyone else have any similar pain? . I don’t know if this is related to the myeloma or something else.
Hi
I was diagnosed on 12th October 2012 with Multiple Myeloma and I am now 6 months post stem cell transplant and I am feeling terrible pains in my body mainly back, down shins to the top of my feet and down my fingers. I have seen a (sorry about the spellings) neurologist, rhuematologist and a back specialist. I have had a kyphoplasty, carpel tunnel on both wrists. I have also been having steroid injections 4 weekly to try to manage the pain. I am on 70 mg of oxycodone twice a day, amitryptiline, gabapentin, celebrex and oxynorm. I have Zoledronic Acid every 4 weeks to strengthen my bones.
Some mornings I cannot get out of bed because the bone pain is so severe then it takes a good 45 minutes for my body to wake up, I am then ok (ish) until around tea time then the tiredness sets in and I am normally tucked up in bed around 7pm thats when the bone pain starts again.
Does anybody else suffer this and if so, what are you doing for this. Some nights I lay awake imagining all sorts but mostly that I have secondary cancer – the imagination in the middle of the night can be awful
I am going to try again tomorrow and I am going to speak with the Nuerology specialist to see if there is anymore he can do as I just want my life back to how it used to be.
Mandy x
Thanks Etta,
I can tell already that people are friendly.
I put my story on my profile but will copy to here.
Thanks again Etta, nice to meet you. Karen 🙂
I am a 51 year old married mother of 2 teenage girls. Diagnosed aged 50 in July 2012, with Multiple Myeloma. Changed all our lives forever. We live in Rutland, but our nearest hospital is Leicester Royal infirmary, almost 30 miles away. Treatment to date, CTD chemotherapy in Myeloma Xi trial from August 2012 – four courses. Radiotherapy 8 gy to spine from T5 to T12 with an exit dose to the sternum. Vertebroplasty to 3 vertabrae, further vertebroplasty (cementing) awaited. (2nd MRI 11/5/2013) Autologous stem cell transplant January 2013 (stem cells in store) Medication at present Zoledronic acid (zometta) every 4 weeks. (bone strengthner) Morphine, zomorph 40mg twice daily Adcal-D3 oramorph Paracetamol. My consultant prescribeAzithromycin(antibiotics for emergencies), i am allergic to penencilln (sp) I have a back brace that has never been properly fitted. I have a slight curve, the physio recomended that I spent some time each day on a gym ball, it really helps with posture. I have a perching stool in the kitchen, murder keeping my cats off it. A board for the bath, again somebody was to come round an fit it. 9 months(approx). I do not bath anyway as it is very uncomfatable, and I cannot lie down I have a blue badge (parking0, which is very useful, though I have not driven myself for sometime. Worse than all this is the fact my consultant signed me of work for another 6 months, because of pain, risk of infection (I am a school cook) and I am waiting another vertebroplasty. Although i have family, they are out at school/college/work, so I have a lot of time alone. Our nearest realatives are 3 hours away and the few friends I have are working of course. I have nice next door neighbours, but cannot impose daily. As well as my job I used to work on Saturdays in our local cancer research shop, i miss that too, although I chat every now and then to the manager, I must ask my consultant can I go back. Is there an infection risk though. My husband (and daughters) has/have been very supportive and strong, but I sometimes feel guilty, as it has not only changed my life but of course all of us. I think my husband over worries sometimes, that is not a critisism, he has been great, I do not know how I could cope without him. Thanks for listening, reading through some threads, you all seem a friendly bunch, not the best way to make friends, but I hope we can. Take care Karen
Last 10 Posts
Two weeks ago I was diagnosed with Asymptomatic Myeloma. I'm waiting for a letter giving me my first monthly "for ever" infusion of Zoledronic acid. I have started to take Calcium Carbonate tablets.
I'll lurk awhile here to learn from others.
BTW I'm a 65year old male.
Hi Lexi,
My Mum is 83 and was diagnosed in 2007. She did not take the news well either and was quite depressed for a while, particularly as my stepdad had only just passed away. She also finds it hard to understand the disease and gets a bit confused so she needs a lot of help with it all from me. She had no treatment for a while, just monitoring every three months but her paraproteins (which are the indicators of myeloma in the blood) started to rise slightly (started at 17 and rose to 36) so her consultant started her on course of chemotherapy which was tablets – Cyclophosphamide, Dexamethasone and Thalidomide (CDT for short). You Mum's consultant will assess the paraproteins over a period of time to see if they are rising and there seems to be different approaches – some consultants will begin treatment earlier with the aim of tackling things before any symptoms develop. If your Mum needs treatment they will assess what to do on the basis of her general health, this is normally about kidney function, bone damage, anaemia etc. After initial adjustments to the various doses my Mum had a good response to the CTD and was in plateau for about two years which meant the disease was stable. She has recently started a course of Velcade injections as her levels started to creep up again (from 12 to 17) which is inevitable really as there is no cure for myeloma. With elderly people the aim is to keep them as symptom free as possible without giving medication at levels which cause unacceptable side effects. You mention anaemia – my Mum had a small blood transfusion this week for that and she is feeling very much brighter as anaemia can make you feel very low. Iron tablets are not the best option as they cause other tummy troubles. Mum is now also having a bone strengthening infusion (zoledronic acid)once a month which helps to bind calcium to the bones and keep them stronger – this is actually a very useful thing for all elderly women).
So there are lots of things that can help if the disease progresses and they are all available even to older patients provided they are fit enough to cope. In terms of long term outlook I believe it used to be much shorter but all the new treatments make a big difference and certainly my Mum is still reasonably fit and health, mobile and doing very well for her age.
Hope this helps but do ask any questions and I will help if I can! Remember to look after yourself as well as it can be hard for carers too.
Take care,
Jill
