Hi Andy
I'm glad you still feel well after so many cycles. Your body must be able to tolerate the regular drugs without you suffering bad side effects – which is great news. I remember having quite a few transfusions after my four cycles of CDT. I went into hospital with a walking stick and came out after the transfusions without one and feeling so much better. I hope your treatment is able to continue and controls the myeloma.
Jan W x
Hi
If your dad has just been changed to Zometa via infusion from bonefos tablets, then the first infusion can certainly cause you flu like symptoms and leave you very tired for a couple of days afterwards. (There are quite a few comments on this forum about Zometa in previous discussions describing the side effects.) However, once you dad gets used to the monthly infusions, hopefully the side effects will diminish.
Around the time of the infusion, your dad should try to increase his fluid intake a couple of days before, during and afterwards to reduce the side effects. The long term use of Zometa is supposed to help with bone pain and help with myeloma. It took me about six months of regular use before I started to achieve some bone pain relief from Zometa. I haven't heard that it actually has pain relief in this type of infusion, but perhaps you dad is on something different? I still have to use pain patches, 8 lots of 50mg tablets of tramadol to keep my pain under control. The zometa has allowed me to reduce the tramadol tablets to 4 per day.
You will need to talk to your dad's consultant about any bone damage which has been identified during his treatment. I have a hump in my back from collapsed vertebra. My consultant informed me the back would not straighten apart from an operation, but he also advised sitting in bed resting again soft pillows would not help with my posture. Hopefully your consultant will be able to advise on what was seen during his last recent scan and whether this showed a curve in the top of your dad's spine or anything in his neck. If nothing was seen on the scan, you could mention the palliative nurse's comments and ask for the consultant to have a look at your dad's back/neck. Unfortunately with myeloma you can damage your bones at any stage.
I hope your dad feels better soon and that you get some answers to your concerns.
Jan W
Hi Marina
My husband was extremely worried when I came out of hospital after my SCT. From day one, I had been on fluids and hadn't eaten for 10 days after my SCT. I was released the day after the fluid line came down and I could only drink/eat a little without vomiting.
I was wheeled out of hospital and went straight to bed at home. I slept for nearly a week with only being awake for a few hours during the daytime. I hardly ate anything, but did manage to drink more than in hospital. My hickman line was left in for nearly a month after being at home. I didn't need any further fluids, but the line remained just in case further medication was required shortly after release from hospital. I was quite wobbly on my feet when I went to the toilet and had to use a walking stick to remain stable. My leg muscles were weak and I couldn't bend down without toppling over! My husband had never seen me so poorly. He had to contact the myeloma nurse several times for reassurance.
We are all so different during and after SCT, but as others have responded, you need to contact the hospital to talk through your concerns with the myeloma nurse. They will provide you with his blood results and the reasons as to why they thought he was well enough to go home. Try getting your husband to take some paracetamol for the temperature and continue to monitor it during the night and tomorrow morning. You can then discuss this with the nurse, or if the temperature goes up any further contact the hospital sooner.
Jan W x
Hi Vicki
You must be so worried about Colin catching chicken pox again. I had shingles ten months after my SCT with a very itchy and unpleasant rash all down my left side and arm together with feeling very poorly for three weeks.
As others have said, you should contact Ellen, the myeloma nurse, especially as she has carried out some recent research on the subject and wrote a very good article in the last edition of Myeloma Matters on why myeloma patients should not receive the current chicken pox vaccine. Apparently the vaccine contains a live virus which is not good with our weakened immune system. However, Ellen also stated there was a vaccine being developed without the live virus – perhaps she can provide you with some more information on this?
There is also a new one off shingles vaccination which will be offered routinely to patients aged 70+ on the NHS from this September onwards, but again this is not advised for patients with a weakened immune system. As you say, Colin might need some anti viral medication from the GP, especially as you need to begin the medication within a couple of days of the rash beginning for it to be effective.
Fingers crossed he will remain fit and well without any need for viral medication.
Jan W x
Hi Tom
I had very bad nausea and sickness for over 10 days during SCT. The consultant informed me that I couldn't go home until I was weaned off the many anti sickness tablets and could keep down fluids/solids. It was a slow process, but by the time I was released I could eat a few mouthfuls of food and drink some water. Because I had lost over 4 stone in weight since diagnosis due to sickness, I was referred to the dietician for guidance on food intake, who advised small meals, little and often with supplement drinks until my diet went back to normal.
When I got home, the sickness continued when I tried to eat a heavy meal. It was much better if I snacked or just ate light meals of cheese/tuna or egg on toast, yogurt, custard, etc. I used the supplement drinks for a couple of months. After SCT, I needed a good 14 hours sleep a night. I learnt that if I tried to get up too early in the mornings without adequate rest, then I was sick. If I rushed around after breakfast trying to get dressed or go to an early hospital appointment, then I was sick. I had to rest after food for a good half an hour, otherwise I would vomit. It took a good 18 months before I lost the feeling of nausea or sickness, but because it was occasional rather than every day, I tried to avoid the anti sickness tablets. I learnt to carry around a sickness bowl in the car and in my bag for the odd occasions when I needed to be sick.
I was never offered anti sickness tablets after SCT because my consultant felt they were not necessary. I believed I did not need the tablets and tried to cope as best as possible. I wish now that I had asked for a supply after SCT – if you need the anti sickness tablets then take them until you feel better. It's taken three years to regain my weight and now I need to watch what I eat again otherwise non of my clothes will fit me!
Jan x
Hi John
It just depends how June feels over the next few months when she continues with the cycles of drugs. She might feel tired and rest quite a bit. From the beginning of cycle three, I spent most days sitting around or in bed.
The district nurses supplied me with a soft cushion to sit on in bed which helped prevent any bed sores. I tried a metal back rest for my bed for when I sat up in bed, but soon changed to four soft pillows to stop my back from aching. My hubby purchased a picnic range plastic jug with lid which has been great beside the bed for a constant supply of water. We acquired quite a few of the sick bowls from hospital to cope with the vomiting. I also purchased some plastic bowls to take with me on journeys, just in case I was sick. I used my walking stick for support when moving around the house. I used a pill box for keeping track of my week's supply of drugs, otherwise I kept forgetting which drugs I had taken. I needed a fan in the bedroom because I felt so hard whilst taking the medication.
I didn't fancy any large meals for months, so my parents purchased a range of different types of food as back up for meal times such as soups, custard, jelly, ice cream, eggs, bread for toast, cheese (for some unknown reason I ate quite a bit of cheese or tuna on toast), squash and ice lollies when my mouth became sore.
Hope all goes well when June returns home.
Jan x
Hi Tom
So pleased you are home, with the procedure behind you and time at home to recover in your own surroundings. Just try to listen to your own body. Recover at your own pace and in your own time. Don't feel guilty or feel there is anything wrong if you need more rest, or more sleep than usual or become exhausted after undertaking any little activity.
Regards
Jan x
Hi John
Sorry to hear June has been suffering from sickness and now the runs. Feeling sick and not being able to keep any fluids down is horrible especially in this hot weather. You just need to keep asking your consultant for a different type of anti-sickness drug until you find one which works effectively for both ends. I tried four different anti sickness drugs during CDT before finding one which worked OK, but during my stem cell transplant non of them worked. My husband used to place plastic bowls around the house and in the car, just in case I was caught short with being sick because he hates the smell and can't stand clearing it up!
I hope June continues to feel stronger.
Jan x
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Hi Wendy
I am sorry to see your light chains have now reached 2000, but at least your other blood tests and kidney functions are OK and you feel well which is good news. Do you think your consultant will recommend a BMB before you start the Onyx trial?
It looks like my kappa light chains are also on the increase again, with my last three readings of 574, 700 and then 798. Like you, all the rest of my tests are absolutely fine and I feel OK. In fact two weeks ago my neutrophils were 1.9 which is entirely different from virtually constant readings of around 1.2 for the last three years. Perhaps the increase is down to a good boost of vitamin D from the lovely sunshine over the last few weeks? I say this because the only other time my neutrophils reached 1.9 was last year after spending 10 days in the sunshine on the Canary Islands. Although I don't think my consultant is too impressed with my interpretation of why my neutrophils have increased, but it sounds like a good incentive to try a few more holidays abroad to test my theory!
It's strange how individual consultants/hospitals appear to apply different limits on the levels of kappa light chain readings before they recommend further treatment. I have been given a target of 1,000 before further investigations or relapse treatment. But this target is probably because of my previous bone damage occurred when my readings were around 2,000. I wonder why some myeloma patients can reach readings of many thousands of light chains within their system, but they do not suffer from any bone damage?
I hope the Onyx trial goes well and your light chains start to decrease.
Jan x
Hi Vicki
My consultant told me my energy levels should be back to normal three months after my stem cell transplant which was completely wrong and I felt miserable as well as worried that I was so exhausted, tired and slept for a minimum of 12 hours every night for a good year after SCT. I kept thinking my myeloma was returning because every bone in my body seemed to ache and I would start sweating easily if I tried to carry out household chores. I had to limit climbing the stairs because of the effort involved.
It's now almost three years since my transplant and although my energy levels have slowly improved over the years, I still feel as though my body has a certain amount of energy before it quickly loses its charge and needs to sleep/rest to recharge the batteries. I still have to rest for a couple of days if I want to go out for a whole day or to any special events and then rest afterwards for a few days to recover.
Hopefully Colin will steadily improve his energy levels over the forthcoming months. Try to keep a diary of his activities to see what makes him tired and see whether after the next three months if things are improving. Like others have commented, it seems very usual for some of us with myeloma to constantly suffer from fatigue.
All the best. Jan x
Hi Dawn
Following my SCT in August 2010, I've been taking daily supplements of curcumin mainly to help fight off any infections and to try to help boost my immune system as my neutrophils have consistently remained low since my diagnosis with light chain myeloma at around 1.3 – 1.5. I have also read on various cancer sites/myeloma blogs that curcumin can be effective against light chain myeloma, which is another reason I am trying the product.
My light chains have slowly increased over the past three years, but have remained quite stable for the past year at around 600. However, I've been very fortunate with hardly any infections since my SCT with only one cold virus and shingles. At the time I developed shingles, I had changed my supplier of curcumin for a cheaper source from America. Unfortunately,I realised after a couple of months of taking the supplements from America that they were fake with non of the usual smell or yellow discolouring of the skin when you handled the tablets. Whether it was a coincidence that I developed shingles at the same time as taking the fake curcumin, I don't really know. At the time of my shingles, my kappa light chains increased by 200 and never fell back again to their previous low levels. My consultant is quite happy for me to take curcumin, but he doesn't believe their is sufficient evidence to indicate this supplement can help with myeloma.
I am impressed with your Bupa cover to be able to fund Pomalyst as part of your current course of treatment, especially with it not being available in the UK apart from trial situations. I hope changing the combination of your drugs will begin to effectively reduce your light chains. What level are they at the moment? My first line of CDT treatment and SCT was financed via my husband's medical insurance via his workplace. We are also covered by Bupa, but they would not fund certain cancer drugs for longer than six months. At the time, this included thalidomide and zometa infustions. In order to continue on Zometa for longer than six months, I changed my treatment to the NHS which has provided an excellent team work approach to my myeloma.
I would like to find a supplement which would help raise my neutrophils levels. My GP has suggested a general vitamin B complex tablet, as well as a B12 supplement which I've started a couple of months ago. As yet, I haven't changed my usual food intake, but I'll certainly have a look at the Budwig diet.
Good luck with your treatment.
Jan x
Hi Sandie
I was pleased to read your comments about your mom's progress. Let's hope she will be able to stop treatment over the next few months and have some time to recover from the side effects of the drugs and get used to undertaking her usual daily activities without worrying about the constant treatment.
Like you, for months after the damage to my spine I could not lift any items without severe pain including bath towels, hairdryer, magazines, pillows, etc. It took me over two years before I could climb into the bath and sit down without severe back pain. The curve in my upper spine still makes it difficult to find comfortable seats which support the spine without increasing the back pain. I sit in bed with four soft pillows supporting my back to watch TV or use my laptop. I can't sit at my computer desk without back pain. The monthly Zometa has certainly helped reduce my back pain, which I hope will continue to improve with ongoing treatment.
The more I rest, the more the bone pain is controlled and reduced. However, the strong pain killers greatly assist me with my mobility. My family have been marvellous, especially my husband who now carries out most of the household chores which involve heavy lifting such as carrying wet washing, vacuuming, gardening, moving furniture to clean, etc. I shop on line and use a shopping trolley if buying goods at the stores.
Let me know what your doctor suggests to improve your pain.
Take care.
Love Jan x
Hi Anthony
So sorry to hear the start of your CTD treatment is not going particularly well. We all react so differently to the drugs, with some lucky patients not suffering any side effects during treatment. You might find it useful to complete a daily diary to monitor your reaction and emotions to the different drugs throughout your treatment/cycles because you do tend to forget after a few months.
I had four cycles of CTD and the level and range of side effects slowly began to increase throughout the cycles. By the end of cycle four, I was in bed most of the day unable to walk up and down stairs due to muscle weakness, bone pain, constant sickness, shortness of breath, a urine infection, bed sores, constipation, mouth sores and required a walking stick for support. At the end of cycle four and prior to my SCT, I was admitted into hospital in a wheelchair due to anaemia for blood transfusions which really improved how I felt, increased my energy levels and enabled me to walk better.
The whole period whilst you are undergoing treatment causes a huge stress on the patient, carer and family members especially when dealing with the unpleasant side effects of the drugs, combined with the constant worry about the effectiveness of the treatment. Remember, you will always have the opportunity to talk through your specific side effects with your consultant/nominated nurse at the end of each cycle. Although the cycles seem endless, at least there is treatment available and it is for a relatively short period of time. Like others have said, it does get better.
Jan x
Hello,
There is a very detailed booklet explaining all about myeloma light chains on the International Myeloma Foundation website, entitled, "Understanding Serum Free Light Chain Assays". Approximately 20% of myeloma patients have light chain myeloma.
All of my blood test results are normal apart from the high level of Kappa light chains in my urine. When I was diagnosed with myeloma after bone damage, my Kappa light chain level was 2,500 but decreased rapidly during CDT and stem cell treatment to around 40. Over the last three years, my levels have slowly increased to around 600, which my consultant is happy with so long as I do not start to suffer any more bone/kidney pain, infections or raised calcium levels. However, once I reach 1,000 I will need to restart treatment, otherwise my body will be more prone to further bone damage or kidney problems.
The normal range of Kappa light chains in our bodies should be in the range 3.3?19.4 mg/L (different laboratories use different measures) Your consultant will routinely measure your light chains during your CDT cycles to determine the effectiveness of the treatment. You can ask your consultant for your current light chain levels and then regularly monitor the levels over the course of your treatment which your might find helpful to keep track of any progress.
All the best for your chemotherapy over the next few months, which I hope manages to tackle and decrease your light chains.
Jan x
Hi Wendy
I am really impressed with your high level of activity which you have retained since your myeloma treatment. Unfortunately, I never recovered my energy levels and I easily become tired which is so frustrating especially as I was very active prior to myeloma.
When your consultant is suggesting waiting, I presume he/she wants to see whether a pattern is emerging about just how rapidly your light chains are increasing. You never know, they might not increase so much after the next test. However with your current light chain levels, I would suggest you ask your consultant for some advice about undertaking your planned sporting activities in order to avoid any possible bone damage. damage.
When I was diagnosed with myeloma my light chains were 2,100. However six weeks prior to the diagnosis three vertebrae collapsed in my back. Up until the bone damage, I had experienced a few acute pains, but generally felt OK with no prior back pain. You just need to be careful now that you are possibly heading for a relapse.
Jan x
