Hi Fuzz,
How was your appointment with your GP? Did you push for blood results? Your immunity must be low at present for you to have another chest infection, sores on your tongue and kidney infection. Hopefully all of your aches, pains and infections might be nothing serious. But you need to press for further tests to try to determine the precise reasons for your raised iga levels, which might just be a response to your immune system being exposed to infection, a virus or bacteria.
Myeloma can be so difficult to diagnose because of the various symptoms which are presented by individuals and the type/degree of myeloma. In the 12 months prior to my diagnosis with myeloma aged 53 years, I had three chest infections, an aching kidney, rib pain and the occasional “odd” pains in various parts of my body around my groin, pelvis and back together with hot flushes. I just put the aches and pains down to my working too hard and thought I just needed a good rest. When my pains increased in my kidney, I was referred to a kidney specialist for suspected kidney stones. I had a CT scan, with kidney stones being ruled out and when my rib pain increased, I was referred to a gastro specialist who thought I had gall stones or stomach ulcer which further tests ruled out. It was not until three vertebrae in my back collapsed that an MRI scan was ordered, which showed several lesions in my bones with the radiologist suggesting possible myeloma. As suggested by Fiona, I would certainly press for further investigations if your rib pain continues, especially an MRI scan.
I hope you find some answers to all of your aches, pains and infections.
Regards Jan x
Hi Helen
Your life has certainly been quite eventful over the past few months. I should think you are exhausted after moving house and need the spare time which your retirement offers to recover, relax and spend some more time with your family. Did you enjoy your time at the film festival – it must have been a memorable and completely different experience. I’m sorry to hear about your father. It’s such a shock and so emotional when your parents unexpectedly die without much warning, which is what happened to my mom a few years ago when she was diagnosed with leukaemia following a blood test, admitted on the same day to hospital for treatment, but contracted pneumonia and died a few days later. My father could not understand just how quickly she deteriorated in hospital and was still in shock for months afterwards.
You must be very concerned about your blood results and worried about the next stage in your treatment. Do you currently experience any side effects or generally feel well at present? Unfortunately, I haven’t heard or read much about interferon apart from some brief details on the Myeloma Beacon site about the drug being used for maintenance therapy and can be combined with Thalidomide. Perhaps you might be able to discuss the options with the nurses at Myeloma UK or seek a second opinion about your next options.
Regards Jan x
Hi James
I know how you feel. Unfortunately the myeloma drugs, including Revlimind, can cause constipation (see Myeloma UK factsheet on constipation). I suffered with severe constipation during my myeloma treatment with CDT, especially during the third and fourth cycles. My regular use of pain killers for a collapsed vertebrae also contributed to the constipation problems, together with reduced exercise due to fatigue, back/rib pain and lack of appetite due to nausea. I asked my chemo nurse for advice, but she just advised me to ensure I was drinking the required 2 – 3 litres of liquid per day. Like you, I tried eating extra fruit, fibre and drinking as much liquid as possible but nothing appeared to work apart from Senna every three days. At one stage, I was munching through nuts, seeds, prunes, prune juice and avoiding caffeine, but without any results!
Perhaps your consultant/GP can prescribe a different type of laxative? I was prescribed sachets of Movicol which works by softening the stools and producing quite a liquid stool, but appeared on many occasions to give me absolutely no notice of movement resulting in several accidents which were embarrassing. However, some of my relatives and friends regularly use this medication for their constipation with good results. I tried taking Omega 3 and fibre supplements without success, but I then tried taking a combined multi-vitamin tablet with probiotics which seemed to work for me.
Regards Jan
Hi Jeff
I would certainly like to reduce my painkillers, although I realise that I cannot manage without some type of pain relief due to the pain around my vertebrae especially when I am tired or have carried out too many tasks during the day. I still have to regularly sit down to relieve back pain. I would love to be able to sleep on my front, but back pain will not allow me to sleep in this position. It has taken over two years for me to be able to sleep on my side without back pain following the collapsed vertebrae. Therefore, I know I need some pain relief, but it’s adjusting the dose to an amount which does not cause the common side effects associated with the medication. The fentanyl patches do a very good job of providing constant medication over three days, rather than the ups and downs of pain relief tablets which last for short term periods of 4 – 6 hours. At present my three day fentanyl patches can cause itching on the first day of application as a common allergic reaction to the glue in the patch, with extra energy during the daytime but a sleepless/restless night as my mind goes into overdrive. The second day is OK, but on the third day my back pain starts to resume, with less energy and restless legs towards the end of the day. Constipation is also a regular battle with pain killers.
Perhaps you can ask your consultant/GP about how much medication you should reduce and over what period of time. When I first tried to reduce my fentanyl patches, I decided to order patches with 50% less dose. Unfortunately, a 50% reduction was too drastic resulting in severe withdrawal symptoms. I only lasted three to four days before resuming my usual dose. On my second, third and fourth attempts to reduce the dose, I tried a 25% reduction but again the side effects were not pleasant, but I did last around 7 days before resuming my usual dose. There is no way in which I could consider “cold turkey”. Apparently the specialist clinics in Europe and USA offer alternative substitute drugs to help wean you off the painkillers more easily. Personally, I have come to the conclusion that I need to very slowly reduce the dose by perhaps 5 – 10% and take more time to allow my body to become used to the reduced dose before attempting further reductions.
Good luck with your discussions and let me know what happens when you attempt to reduce your painkillers again.
Regards Jan
Hi Jeff,
I’ve been using fentanyl patches since my vertebra collapsed some four years ago. Overall, the medication has worked well to reduce my back and rib pain, but initially had to be supplemented by tramadol tablets every day. Like you, I’ve had similar discussions with my consultant and GP about trying to reduce the dose of my painkillers. Over the past two years, I have managed to reduce the tramadol tablets without much side effects. However, trying to reduce the fentanyl patches has proved far more difficult. I have tried on numerous occasions to slowly reduce the dose, which has left me experiencing some serious withdrawal side effects such as sweating, flu like symptoms, headaches, low energy, achiness, shaking and generally feeling awful. After a couple of weeks, I’ve had to return to the original dose.
I must admit that I’ve backed out of trying to reduce the dose again, but like you I think I need to obtain some more advice from my consultant and GP about managing the withdrawal symptoms to see whether there is any professional help or alternative drugs to encourage reducing the daily pain killers. In the US and Europe, there are professional clinics to help individuals stop their pain killers.
Regards Jan
Eve, I can completely understand why you feel so numb. Your past few months must have been so emotionally and physically intense caring for Slim. From all of your posts, Slim sounded so positive in his approach to this awful cancer even during his final few months, which would have been because he always had you by his side for the love and support to help him through his battle. My thoughts and best wishes are with you and your family during this stressful period. Love Jan x
Hi Anthony
So sorry to hear your news about your myeloma returning after such a short period of time. In your post, you ask about details of clinical trials. If you look on this site under the heading of clinical trials, you can find full details about various trials available for relapsed patients across the UK.
Very best wishes.
Jan
Hi John
Sorry to hear you dad is finding the treatment difficult. Some people are lucky to sail through chemotherapy without many side effects, but others can suffer various side effects such as weight loss, fatigue, infections, nausea, muscle weakness, loss of taste, hair loss, etc. Like your dad, I also have a curved spine due to three collapsed vertebrae prior to diagnosis of myeloma and during treatment my weight loss was over four stone with heavy legs/muscle weakness in the legs making it difficult to walk for months. Fortunately, the drug related side effects will gradually disappear after treatment finishes.
If you want to find out more about myeloma, the treatment options, clinical trials and future drugs then I would recommend you attending one of the many myeloma information days run by Myeloma UK across the UK (see this site for more information and dates about the information days). The sessions are well attended, with myeloma consultants, nurses and patients delivering a variety of topics. There are plenty of opportunities for discussions with other myeloma patients and specific sessions dedicated to question and answers for patients and carers.
I hope your dad’s treatment is successful.
Kind regards Jan
I would certainly mention your pains and aches to your specialist. My myeloma was diagnosed in March 2010. For approximately 9 months prior to the diagnosis, I would experience some strange aches pains in my hip, under my rib cage, around my kidneys and in my back. The pains would come and go. I just thought that I had strained certain parts of my body due to lifting heavy boxes at work. For five months prior to diagnosis, I underwent various x rays and scans to try to detect the cause of the pain, but unfortunately three vertebra collapsed in February 2010 before a consultant recommended an MRI scan which eventually diagnosed the lesions in my bones caused by myeloma. At least with you being already identified as smouldering, your consultant will be able to carry out further tests to detect whether your myeloma is the cause of your aches and pains.
Take care.
Jan
Hi Vicki
I know it’s really worrying and stressful when you see light chain numbers increasing. However, hopefully it’s just a blip due to Colin’s recent virus on his holiday. My light chains usually increase by 200 following a cold virus, but six weeks later they drop again sometimes back to their original number and sometimes just slightly higher that the previous reading. My consultant usually tells me not to worry with a one off increased reading, but suggests a waiting policy until a further two readings have been monitored to gain a greater understanding of what’s happening with the myeloma.
Hopefully, Colin’s light chains might just be slowly increasing and could take years until any further treatment is required …. which is basically what has happened to my light chain readings. My SCT was in September 2010 and since that date, my light chains have steadily, but slowly been increasing over the years rising to around 1000 just prior to Christmas last year. My consultant started to discuss further treatment and advised I had another set of x rays taken to see whether there had been any changes to the condition of my bones. Thankfully the x rays were OK and unexpectedly, my light chains decreased to around 750 this year, rising again to over 800 last month. As Megan stated, light chains are volatile and although I know a cold virus or infection can increase the numbers, I haven’t got a clue as to why my light chains decreased by 250 at the start of this year.
Whilst I realise that I am slowly approaching the need for further treatment, I hope this will be many months in the future.
Fingers crossed Colin’s next set of results will be OK.
Take care.
Jan x
Hi,
Like others, I remember it well losing my taste during CDT and it took about three months after chemotherapy before my taste buds eventually returned to their usual levels.
My mother suffered from permanent loss of sense of smell and taste after a severe cold for over twenty years! She tried various remedies, joined discussion forums and participated in a local working group trying different options. She did find that taking a small amount of zinc supplement did help with an ad hoc return of her smell and taste, which she was more than happy to accept that on occasions she could taste and enjoy her food. She used to experience metallic/chemical tastes especially after eating red meat and found either very sweet, bitter and salty food could produce some tastes in her mouth, which is the same experience as others have commented on eating ice cream and salt/vinegar crisps. Also cold and frozen food can taste better than hot foods. Some people also state food tastes a little better with plastic utensils and glassware in order to reduce the metallic taste. You could also try some sugar free gum or some hard sweets to help reduce the metallic tastes in your mouth. I used mint chewing gum to help reduce the strange tastes.
Apparently one of the many reasons why our bodies require zinc is for proper sense of taste and smell. However, I wouldn’t recommend taking zinc supplements whilst on chemotherapy or whilst taking other prescription drugs due to any possible interaction. Taking too much zinc can cause some serious side effects and be toxic to our bodies, with the Department of Health UK recommending no more than 25 mg be taken on a daily basis, including what we eat from daily products such as cereals, sea foods, red meat, whole grains, brewer’s yeast, etc. I know my mother used to experience “eye floaters” after taking zinc supplements for a long period, which stopped when she came off the zinc for some months.
You also need to watch out for the wide range of different types and strengths of zinc supplements on the market with some prone to cause stomach problems as well as nausea and you usually need to take them with a protein meal rather than on an empty stomach. It’s a possible option to consider if your taste does not start to return after a couple of months after your chemotherapy has finished, but perhaps best if you discuss with your doctor first.
Take care.
Jan
Hi Lois
I think it’s a great idea about providing a book with hints and tips on living with myeloma. I don’t know how you are going to organise so many different comments from all of us, but perhaps you might consider placing the suggestions under various headings such as coping with myeloma, first line treatment, stem cell transplants, remission, dealing with relapse, second and subsequent treatments and final stage.
My tips would be:
– Use a weekly pill box with sections for each day and times of the day. If you fill up the box each
week, you can then see at a glance whether you have forgotten to take any medication.
– You might change doctors or hospitals in the future, therefore it is worthwhile keeping a record of
any medication, side effects, infections, hospital admissions, etc which you experience throughout
your myeloma journey. You might need to refer to this information in the future.
– When you are starting treatment, you don’t know whether you will suffer from any side effects from
the drugs. But in case you start to feel unwell whilst on treatment, plan ahead and organise items
which you might need such as packing an overnight bag for hospital in case of emergency admission,
a fan for your bedroom if you suffer from hot flushes, getting your hair cut and/or organising a
wig via NHS if you are going to lose your hair with treatment, make sure you have sufficient night
wear if you are in bed for longer periods and pillows to prop yourself up with whilst sitting in
bed. If you start to suffer with nausea consider stocking up on some plain food in case of
nausea such as plain biscuits, soup, ice cream, custard and some ice lollies if you cannot keep
down liquids/water.
– If you lose your taste, try using chewing gum or mints to take away or mask the metallic or bitter
taste in your mouth.
– Stock up on some moisturiser/face cream for if your skin goes dry during chemotherapy.
– If you suffer with rib pain, then a bra can be very uncomfortable to wear. Try a non wired bra, or
built in support in T shirts. You might need to abandon wearing a bra until the bone pain
subsides.
– A plastic covered picnic jug for water is useful to have next to your bed to remind you to drink
water and saves you from going to the kitchen during the night if you need to take tablets or feel
thirsty.
– Consider purchasing a foldable walking stick, which you can use if you feel dizzy during the night
when going to the toilet or for use outside.
– If you suffer from nausea, remember your doctor has various drugs which might be suitable. If one
drug does not work, then keep asking your doctor if there is something else available.
Regards
Jan
Hi Helen
I think you have coped so well continuing to work whilst going through a second round of treatment, especially with the various side effects which you have suffered. It must be so difficult balancing your work, family and myeloma treatment. Hopefully occupational health will come up with a good retirement package for you to consider taking in the near future.
I’ve been very fortunate, managing to just avoid starting my second round of treatment earlier this year. When my light chains recently reached 1,000, my consultant recommended a full skeletal x ray which thankfully showed no further lesions or bone damage since 2010. At the same time, my light chains decreased to around 740 which I thought was a blip, because I had been on a short course of antibiotics for a sore throat/high temperature, but my last blood tests showed another drop to around 700. I’m totally confused about my fluctuations in light chains, but obviously relieved that I might have some more time before I start treatment again.
As you say, it’s difficult to plan ahead when you don’t know what is happening to your health and how your body will react to treatment. In January, when my consultant was discussing my next course of treatment, I was trying to work out whether I would be well enough to attend my son’s graduation ceremony in July as well as sorting out my elderly father’s arthritis needs for his mobility problems such as a stair lift, grab rails, occupational therapy, physiotherapy and many consultants visits before any side effects kicked in.
Take care.
Love Jan x
Hi Helen
I’m really sorry to read that you have relapsed. Have your light chains jumped considerably, or are they slowly climbing upwards? You must be so worried and anxious about starting another treatment. It’s such a shame that you couldn’t have a longer period of remission for your body to recover before you start more drugs. Do you think you will carry on working or consider the early retirement which you were thinking about?
Hopefully, one day soon there will be sufficient research available to determine which drugs have a better chance of working for our specific type of myeloma. I wonder when Velcade is not being used prior to SCT, what is the average remission period? I remember Dai suggesting last September that from comments made on this forum, he suggested Velcade only appears to achieve 6months to 12 months remission period. Perhaps there is a national remission figure published for this drug?
I hope you manage to remain positive and hope your next treatment is very effective.
Love Jan x
Hi Frances,
Like others have posted, I also started on my myeloma journey with odd pains in various parts of my body, which accumulated into spasms in my back which I suffered for some weeks even with strong painkillers. During this period, I was being investigated for possible causes of the pain and underwent x rays, ct scans, and ultra sound scan but nothing was discovered and my pain killers were just increased. The back spasms began to get worse and like you are finding, I couldn’t lie down easily or get up from chairs/bed without suffering severe pain. The spasms did disappear after a few months, when I woke up one morning in bed unable to move and found out later that I had suffered with three collapsed vertebra. My consultant then sent me for an MRI which showed the damage in my spine and identified several other sites of concern, with myeloma as a possible cause.
I think you should push your GP/consultant for an MRI to see whether you have any bone lesions or possible damage to your bones. Just try not to lift or move any heavy objects which will aggravate the pain.
All the best.
Jan x
