Hi Maureen
I'm not sure what normal levels of Kappa/Lambda light chains should be for myeloma patients. All I know is that the cancer treatment aims to reduce the light chains to as low as possible. Mine were reduced from 2,200 to 45 after treatment which were considered to be good, so Ian's results at 52 also look good. What were they before treatment?
After many questions, my consultant has given me an upper level of 800-1000 kappa light chains before further investigations are required before launching into the next round of treatment, unless I start to experience problems such as increased bone pain, fractures or recurring infections. He tells me that he has learnt over the years not to respond to one light chain reading especially if no prior pattern has been established, but there needs to be several readings over a period before a possible relapse is confirmed.
My kappa light chains currently stand at 600, with a scare last Christmas when they increased to 800 following a cold virus, but returned to 600 a few months later. Apparently the body increases its production of light chains when fighting bacterial infections, but the levels tend to decrease a short time after you recover from the infection.
Although my levels have gone up and down over the last year, I appear to have reached a plateau at around 600. This is still too close for comfort and certainly raises my stress levels when I have blood tests taken every two months.
Jan
Hi Ann
Yes, my vertebrae collapsed whilst I was asleep but I didn't feel a thing until I woke up. I lost 3" in height and as a result have a hump in the top of my back. It took me ages to get used of my reduced height. I've shrunk to 5'1" and my one son is 6'2" – he now looks so tall next to me. Like you, I went to A&E the week prior to my back problems complaining about severe chest pains, but was told it was probably just wind! So yes, you might have broken your ribs whilst asleep.
I was offered vertebroplasty treatment after my SCT which aims to restore any lost height by inflating a balloon inside the fracture and filling the balloon with bone cement. However, I felt so tired for months and months after the SCT that I couldn't face returning to hospital for an operation.
Due to the back problems, it took me 18 months before I could turn or sleep on my side in bed and I still can't sleep on my front. My consultant prescribed fentanyl 50 mcg pain patches which provide constant pain relief for three days at a time and at least these manage to dull the pain. I also take daily tramadol pain tablets. I think the fractures slowly healed themselves over 18 months and the back pain has been much better after a year of Zometa infusions.
I had to give up my business because of my lack of mobility, bone pain, fatigue and not being able to lift items without severe pain. Like you, I had never heard of myeloma before my diagnosis, but all of our family lives have changed considerably since treatment. I am not as active and become tired very easily. However at least there is treatment available to help control the cancer with hope for more effective drugs in the UK in the near future.
Jan
Hi Nikki
I was unable to eat anything and drink very little following my SCT for a good ten days due to constant feeling of nausea, actual sickness, sore/dry mouth which all combined together causing a complete loss of appetite. Even with three different types of anti sickness drugs the nausea wouldn't subside and food/water wouldn't stay down. Because my diet was completely non existent, I needed various bags of fluid, together with three bags of potassium as well as magnesium. I think I also had calcium tablets.
After leaving hospital all of my blood test results have been OK with no extra minerals required. Hopefully Pop will be the same when he manages to resume a balanced diet. Best wishes for his speedy recovery.
Jan
Hi Maureen
I'm so pleased to read your husband's light chains have reduced to a low level. My CDT and SCT were covered with my husband's private medical insurance provided via his long term employer. The actual insurance cover was with Aviva. They were very good at covering all of the bills for my initial treatment.
However, when I had received five month's Zometa infusions after my SCT, Aviva wrote to me stating they would only fund a total of 6 months of a continuous treatment. They had previously issued the same warning with Thalidomide. I also didn't realise that due to my insurance claim for cancer treatment, the following year all of the employees working for my husband's employer, and the actual employer, had their monthly medical insurance contributions increased. I suppose it's the same as if you make a claim on your car insurance, then your cover tends to be increased for future cover.
I could not continue to be monitored by my private consultant and receive Zometa under NHS, so I changed all of my treatment to the NHS and I couldn't be happier with their multi team approach to myeloma. To pay privately for Zometa would have cost around £600 – £1000 per month depending on which private organisation/hospital I used to provide the drug, because you need to pay for the drug and the time/facilities for a nurse to administer the drug by IV.
I would suggest you possibly speak with your private medical insurance provider to see whether they place any restrictions on long term cancer treatment for myeloma such as maintenance.
All the best.
Jan
Hi Anne
I was diagnosed on my birthday aged 53. For the previous 12 years, I had been running my own successful business which employed 25 part time staff. My health up to my diagnosis had been OK with just a few colds and a few strange pains. However, I went to bed one night and couldn't move in the morning, or for the next week, with three vertebra in my spine collapsing. Even then, I just thought I had a very bad back! Almost six weeks later, myeloma was diagnosed from the results of an MRI scan.
It is such a shock and a worry when anyone close to you is diagnosed with cancer. But I hope your treatment is successful and you recover well.
All the best.
Jan
Hi Dai
I have just looked up the other trial mentioned on this sites myeloma home page, where it mentions the new ENDEAVOUR trial which appears to be the same as the upcoming MUK five trial offering Carflizomb + Dex v Velcade + Dex.
You would need to read through all of the eligibility criteria for the Endeavour trial because it appears to be limited to patients who have been through one to three lines of treatment. Apparently any initial treatment, plus SCT and maintenance is considered as one line of therapy. Neutrophils also need to be 1.0 or more. However this trial is currently only open in two UK sites which are The Royal Free and Nottingham. Did your consultant discuss this trial with you?
Hope this is helpful.
Jan
Dear Dai
I have just been reading on this site's myeloma home page the summary from the 14th International Myeloma workshop, held in Japan, which states how Pomalyst is effective for relapsed and refractory myeloma patients who have been through a number of treatments – which I am sure you know quite a bit about this new drug.
Apparently there is a new trial called STRATUS which offers Pomalyst combined with DEX which is open, or about to start recruiting, in the UK in 9 locations. The downside is the distance from where you live in Nottingham as the trial is being offered in Manchester, Leeds, Liverpool, Wolverhampton, Belfast, Bristol, Canterbury, Newcastle and Sutton.
Perhaps this might be a way forward for you to possibly consider or discuss with your consultant?
Jan
Hi Debs
One of my main symptoms before being diagnosed with myeloma at aged 52 was flushed cheeks, sweating and hot flushes on the upper part of my body. When we went to Majorca the year prior to my diagnosis of myeloma, the icy air conditioning in the hotel was a complete bonus for me but my family were sleeping under many blankets to keep warm! At this stage, I began to realise perhaps the flushes were getting out of control and not just entirely connected to a possible menopause.
During chemo my cheeks went brilliant red for a few days after the chemo drugs. Since the stem cell transplant, I lost the hot flushes for a couple of years, but they have started to reappear especially during the warmer nights. But I still tend to sweat a lot if I try to undertake basic chores such as cleaning, cooking and ironing – it appears to be my body's way of telling me I'm doing too much. I also get very hot just after eating and my temperature does rise by a few degrees for half an hour which is strange.
I asked my consultant whether my hot flushes were connected with myeloma but he stated there was no specific evidence, but I have read on this site and other myeloma blogs of female and male patients suffering with hot flushes and sweating since undergoing treatment.
Hope your red cheeks disappear soon. Janice x
Dear Dai,
I am so sorry to hear about your current situation. It's certainly a serious issue which will no doubt face a lot more of us when we have tried various different types of treatments for myeloma. It must be a considerably anxious, stressful and worrying period for both of you as well as your close family. I would also feel angry and upset if I were in your situation, particularly when you read about new drugs being approved in America, but it seems to take an age to access these drugs in the UK.
My neutrophils are never above 1.8 and are often 1.3 without any treatment, so I don't hold much hope if they dropped by even a little with the level requirements of future treatments. I was never offered extra GCSF injections in preparation for stem cell harvest and struggled to achieve sufficient cells for one transplant, but at least this was successful in providing me with nearly three years of remission. I battled to obtain monthly Zometa infusions Aand had to change hospitals to receive the drug.
Perhaps if you speak to the head haematologist consultant at your hospital, as well as your lead nurse and if you are not happy with the outcome of your discussions or available options, then I would contact your local GP for a possible referral for a second opinion at another hospital. You could also contact the myeloma support line to discuss your options and gain their advice on any new treatments which might be available or possible new trials. They were very supportive and with relevant detailed knowledge when I contacted them about my possible second line of treatment and the availability of a specific drug which I was interested in trying.
I know you have changed hospitals and locations before. The travelling time and hassle of being treated at a different hospital within another area is daunting. After changing hospitals, I am now travelling just over an hour to reach my new hospital, but I realise this is still a lot closer than other patients have to travel for their treatment. However, when you are feeling poorly under chemo therapy with bone pain, nausea, muscle weakness,fatigue and then spend hours at hospital waiting around for drugs and appointments, then any travel distance is worrying and tiring. When my mom was diagnosed with Leukaemia last year, there was no way she was willing to travel beyond her local hospital because she was just not fit enough to consider a long journey possibly several times a week to another hospital.
I hope you are able to find a suitable strategy which works for you and your family.
Take care. Janice
Hi Gill
I lost my mom almost a year ago to acute myeloid leukaemia (AML). She was unexpectedly admitted to hospital with a high white cell count and diagnosed immediately with AML. Unfortunately, she died ten days later due to a fungal and viral infection in her lungs. She was treated on the same ward/same hospital as my myeloma treatment with my myeloma consultant being on rotation for duty on the ward for her last few days. Her sudden death was so upsetting for the whole family. The nurses and consultant were so supportive and understanding.
I still find my monthly trips to hospital quite upsetting when I am so close to where she died. Like others have said, I find it comforting to think and talk to her on most days. My dad has placed her photos in his lounge where he can also talk to her before he goes to bed. He finds the loneliness the most difficult thing to cope with especially the nights.
So far in our family, we have lost my husband's mom and dad, his close aunt and my mom all since my myeloma began in 2010. It's been an emotional couple of years.
I hope you take more steps forwards than backwards over the next few months.
Jan x
Hi Lesley
During my chemo, I stopped colouring my hair basically because like you I was so tired and had back pain from my collapsed vertebra. I wish someone had told me to get a haircut asap during cycle 1 or 2 before any possible side effects from the drugs kicked in. I had so many hot flushes and night sweats during treatment that my hair just looked lank and lifeless. By cycle three, I had just managed to get the nausea under control, but fatigue was still an issue. To wash and dry my hair more than a couple of times a week took too much energy and I would feel shattered afterwards. The weight of the hairdryer was also any issue due to my back and bone pain.
I asked my mom to cut my shoulder length hair before my SCT, especially as it was probably going to fall out anyway. My mom has always enjoyed cutting people's hair, but the cut didn't turn out as intended and I looked a complete mess!! Even my consultant couldn't stop grinning when he saw the odd lengths and shape of my hair. He politely asked whether I had done something to my hair! At least with a shorter cut, I could try on a few wigs and scarves.
After SCT my hair fell out and when it started to grow the colour was an extremely light bleach blonde colour. It looked as though I had tipped a bottle of bleach over my head! My usual shade of hair had been a dark blonde with some grey hair. This first crop of hair soon disappeared to be replaced by a thicker dark grey head of hair slightly curly, which stood up on end even when two/three inches in length. Initially, I couldn't control it, but when the hair grew a little longer it started to gradually fall into shape. But I was so disappointed in the shade and general appearance that I wore a wig everytime someone visited or I went out.
I got totally fed up with the dark grey colour that I returned to colouring my hair again about 18 months after SCT. Initially I was worried about leaving a bleach based colour on my head for a long period, so I tried some natural hair colours without ammonia. Unfortunately, none of these worked on my dark grey shade of hair. I then tried my usual Nice & Easy colourant, however it needed to be left 45 minutes on the hair and my scalp began to itch with some sore patches. At this stage I was concerned, so I began to look around for a product which needed only a short period of time to activate and would colour a full head of grey hair. I found Clairol's Perfect 10 which only requires ten minutes on any colour hair. (I know Sainsbury's and Superdrug stock it.) It works for me and manages to effectively tackle all of the grey.
Another possible suggestion is to use a mobile hairdresser and ask their advice about alternative methods of colourants. They will also have access to professional products which are only available to the trade.
Best of luck with the hair.
Jan
Hi Eve,
Many thanks for the welcome to the site.
When I was searching for information on the MUK 5 and 6 trials, I found no specific mention of the inclusion criteria requiring participants to have taken Revlimind prior to these trials, but they did specify the maximum number of previous treatments in their inclusion critera, presumably some of which could include Revlimind?
On the UK Clinical Research database portfolio, the MUK 5 trial outlines the main aim of the trial is to assess the effectiveness of Carflizomb, Cyclophosphamide and Dex (CCD) against Velcade, Cyclophosphamide and Dex (CVD)for relapsed/refractory patients with no more than one line of previous treatment, plus to assess the effectiveness of Carflizomb being used as maintenance treatment.
On the EU Clinical Trials register, the MUK 6 trial is detailed as a phase 1/11 trial looking at Velcade, Thalidomide, Dex (VTD) and Panobinostat treatment and Panobinostat maintenance for relapsed and relapsed/refractory multiple myeloma patients who have received one to four prior lines of treatment. The purpose of the trial is to look at the doseage of Panobinostat and the response rate within 16 cycles of VTD-pano, as well as determining the feasibility of Panobinostat maintenance.
At least both trials are looking at the effectiveness of maintenance treatment. Although in the UK we appear to be a long way behind America with our availablity of new myeloma drugs and range of maintenance treatment, hopefully these latest myeloma trials will decide whether the UK will provide maintenance treatment under the NHS.
Just like Velcade worked for your husband, my consultant has also recommended this treatment as being the most effective treatment for light chain myeloma which is why I was interested in the MUK 5 study which appeared to be a win-win situation of either taking Velcade or Carflizomb with the possibility of maintenance. When I attended one of last year's myeloma info days, the results for Carflizomb appeared to be very impressive.
Jan
Hi, This is my first post, but I have been looking at this site for the past year meaning to participate at some stage. The range of help and advice offered on the site is tremendous and much welcomed. At aged 53, I was diagnosed with kappa light chain myeloma in April 2010 and undertook 4 cycles of CDT followed by a SCT in August 2010. Fortunately, my light chains reduced from 2,200 to around 30. However, over the past two years the light chains have been steadily increasing and now stand at around 575. I panicked recently because following a cold virus in December my light chains increased by 200, but thank goodness after a couple of months they reduced to their usual level. But I realise I am slowly approaching my first replapse which would be velcade, or if available,perhaps the MUK five trial which is why I started to make enquiries about the trial.
MUK 5 appears to be a stage two randomised trial comparing carflizomb, with cyclophosphate and low dose dexamethosone (CCD) against velcade, cyclophosphate and low dose dexamethosone (CVD)for first relapse or primary refractory mm. Out of the 300 selected for the trial, half will be aged 18-64 and the other half aged 65 years and over. The Chief Investigator for this trial is Prof Kwee Yong from University College of London Hospital (UCLH), and this centre is already recruiting patients. Other hospitals across the UK are also preparing to open this trial but there is no exact date for these at the moment, although it is anticipated to be within the next few months.
It appears participants will be randomised 2:1 ratio in favour of CCD. The proposed study will compare 8 cycles of CVD with 6 cycles of CCD, and will also assess the benefit of maintenance carfilzomib in participants in the CCD arm. Participants in the CCD arm, who have at least stable disease at the end of the initial 6 cycles of CCD, will be randomised to receive maintenance therapy with Carfilzomib or no further treatment. Participants in the CVD arm will not receive maintenance therapy.
For anyone wishing to find out more details about MUK five, you can contact Heather McKinnon who is the Clinical Research Programme Manager at Myeloma UK, either my email heather@myeloma.org.uk or call 0131 557 3332.
The trial looks interesting, particularly as this is the only way in the UK you can access the promising drug carflizomb/kyprolis, as well as possibly receiving maintenance treatment.
Jan
