Hi Wendy
Your emotions must be all over the place at the moment which is totally understandable. I wonder whether you have had a cold or virus recently which could have explained the increase in your light chain levels?
My light chains jumped from 600 to 800 just after Christmas and I was given similar advice that if they reached 1000 then further treatment would be needed asap. However, the increase was due to me suffering from a cold virus over Christmas. Apparently we all produces more light chains when fighting off infections/bacteria. Usually after the body recovers from the virus, the light chains revert to their "usual" levels. In my case, they fell back to 600 which is around the level they have remained for the last year and at least this has given me a bit more time before further treatment.
The only other time my light chains jumped significantly was after shingles in 2011, but unfortunately on this occasion they did not revert to their previous level after I recovered from the virus. Recently, I asked my consultant why didn't the light chains resume to their usual level after shingles, but reduced after the cold virus. He didn't have an answer to this question!
Fingers crossed for your next set of results.
Jan x
Hello Linda,
You were brave taking part in a netball match! I haven't played netball since primary school, although I remember playing goal attack for many years and thoroughly enjoying the game. My youngest son is almost 21 and he is studying sport and coaching at uni because he wants to become a PE teacher. His main sports are football, hockey, swimming and cricket. Taking him to sports activities since he was five, I've had to learnt a lot about the rules of many sporting activities, but I still can't explain the offside rule in football!
I'm completely unfit since the myeloma. My energy levels have slowly improved since my SCT in September 2010, but they haven't returned to a very good level. Like you, I sleep a good 12 hours per night and become tired very easily. I'm OK if I don't carry out many activities during the day! My consultant gave me two pieces of advice after my SCT, which were to drink as much water as possible during the day and not to lift items over 2lb in weight. I can understand the weight issue because of putting too much strain on the bones, but I also find I cannot lift/move any heavy objects without suffering bone pain. This is why I've avoided vacuuming, food shopping (it's now done online), or carrying wet washing – it goes in the tumble dryer. I've learnt to adapt and unfortunately my hubby has to carry out more household chores since the diagnosis.
I take fentanyl 50 mcg pain patches which last for three days and at least they offer continuous pain relief. I supplement these with tramadol 50 mg tables x 8 per day, which I have managed to reduce to 4 per day. I've tried to reduce the fentanyl on occasions to 25 mcg per day, but it wasn't successful. Fentanyl is apparently much stronger than oxycontin.
I think you are coping really well being able to work full time. How do you cope with any heavy lifting at work such as moving the stationery supplies or getting involved with setting up tables/chairs for events at school?
Jan x
Hi Linda
It's really good to hear from other myeloma patients who have been in remission for a long period of time and who have been able to maintain a good quality of life after undergoing chemotherapy and SCT. It's great news you were able to resume,maintain and enjoy your employment for so many years without any problems with your bone pain. On the positive side, research and developments in myeloma treatment have been able to slowly increase the average life expectancy, offering patients greater hope of living longer with this incurable cancer.
I feel very lucky that my treatment has been able to give me a period of remission to spend more time with my family and enjoy more years together. Although I would like to have more energy and less bone pain to be able to undertake more activities during the day, I have learnt to compromise and accept what my body is capable of undertaking on a day to day basis. Dealing with the complex emotional issues of cancer can be challenging and stressful, but we all try our best to develop coping strategies and enjoy our lives as much as possible.
I hope you are not too tired from being awake during the early hours.
Jan x
Jan x
Hi Helen
Like you, our one son started uni 4 weeks after my SCT and the other a year later. We hardly see them now they are living away from home, until they return for holiday periods or phone us for money, help with accommodation problems or lifts back home.
You are right, you never seem to stop worrying about them. You try to offer them support as young adults, but it's a fine line between help and them thinking you are interfering with their lives. Being typical boys, my two sons find it hard to express their feelings and emotions. They find talking through problems and their concerns to be a useless activity.
Because dealing with cancer has been a completely new scenario for our family, I often think whether personal or family counselling would have helped to reduce the trauma and it's effects on our family life. On the Myeloma Beacon website, a recent German study showed around half of 114 newly diagnosed myeloma patients indicated they desired support from a variety of avenues including support groups, relaxation and psychological counselling. Over 24% admitted to signs of depression and 4% anxiety. The study recommended a choice of psychosocial interventions be offered to myeloma patients.
Jan x
Hi Sandie
I think your mom at aged 87 is coping really well with taking her drugs and still managing to look after herself with your help. I know I would have struggled without my husband's help, especially dealing with the side effects of fatigue and bone pain. My husband had to take over all of the cooking, cleaning, washing, etc because I felt too exhausted and weak.
I was offered kyphoplasty for the collapsed vertebra but was worried about the possibility of cement leakage especially three years ago when this operation was a relatively new treatment and I didn't feel up to it before or after SCT.
I don't know why I have always called my "mom" rather than "mum" – I've never thought about it before you mentioned it on your message!
Jan x
Hi Helen
I can completely understand your comments about how much you should tell your son about your myeloma relapse especially with his forthcoming exams. Whilst I was going through CTD treatment, my one son was revising and taking his AS levels and the other his A level retakes.
The eldest son was absolutely fine with his A levels, mainly because he had just found a new girlfriend and his thoughts were distracted elsewhere. However, my other son picked up on the stress and emotions of the family and unfortunately he performed quite badly in his AS exams. Straight after his results were announced, his school contacted us stating they were reviewing whether he would be allowed to continue in his final year to take his A levels. They had wrongly assumed he had not worked sufficiently hard enough with his revision.
I wrote to the Headmaster explaining our personal difficulties and the school responded well suggesting arrangements would be put in place to support and monitor him on a weekly basis throughout his final A levels. Following good support and encouragement from the school and together with the fact he could see me recovering well after STC, he achieved great A level results.
With hindsight, I wish I had discussed the situation earlier with the relevant teachers, just in case either lad showed any difficulties with their studies.
Jan x
Hi David
That's a good idea, especially during the times when you have to take quite a few tablets. Jan x
Hi Sandra
Have a look under the side effects section on this site, because there is a recent post under the heading of Zometa flu with 33 contributions relating to this issue which you and your mom should find informative and useful.
On my initial Zometa infusion, I certainly felt ill several days later with increased bone pain, fever and generally feeling unwell. However, further infusions have not caused so much difficultly although I can still feel tired for a few days after the treatment. One nurse suggested I increase my liquid intake a few days before treatment and a few days afterwards, which I have tried and it does seem to work.
The dex will relieve your mom's arthritis, but when your mom stops the dex she might find her arthritis aches a little more or becomes stiffer as her body gets used to coming off steroids. The steroids can also cause your emotions to fluctuate excessively as well as your energy levels. No doubt, you mom is experiencing a range of emotions taking the dex. My son was on/off steroids for many years with his asthma when he was young and he certainly used to become hyperactive when he was taking the drugs and then depressed for a few days after stopping the drugs. He used to swim for years for a local swimming club, but whilst on steroids he was banned from competing in competitions for two weeks. The drugs used to make him feel happier and swim faster! I've never seen anyone kick their legs as quick as him whilst swimming and taking steroids.
I'm not sure what causes the feelings of breathlessness, but during my cycles 3 and 4, I struggled to walk up the stairs without huffing and puffing. I couldn't walk for more than a few minutes without being short of breath and needed a wheelchair in the hospital to cover the distances to the oncology wards. I did become anaemic during cycle 4 which didn't help with shortness of breath. After three blood transfusions at the end of cycle 4, my energy levels and breathing certainly improved. Luckily most of these side effects finish after the short term drugs for the myeloma treatment. Although fatigue and bone is still a big issue for me and it's been three years since the start of my CTD.
All the best for your mom. She sounds as though she is coping well at aged 87 with all of the drugs she is having to take.
Jan x
Hi Ann
It is strange, yet comforting, that we all experience so many similar situations with myeloma. My husband also arranged a spread sheet for each cycle of tablets. We now have a graph to monitor my light chain levels! But the most useful gift which I was given by my mom was an A5 pill box in which I could place a week's supply of tablets separating them between four different times during the day. From the box, I could see at a glance whether I had actually taken the required tablets because you do tend to forget whether you have taken them or not after many cycles.
I purchased a bed back support which I layered with pillows so that I could continue to sleep or sit up comfortably in bed whilst my back was so painful. When I developed some sores on my backside and elbows during cycles, the district nurse provided a very soft flexible cushion to relieve the pressure on my body. You don't tend to know such items exist until you ask or just stumble across them.
The information myeloma days are very useful, informative and a great way to meet other local myeloma patients.
Jan x
Only since my shock diagnosis of myeloma three years ago, I've realised that I have needed to talk about the elephant in the room in order to ensure my partner knows my thoughts about my wishes. However, it's not just one conversation, but an on going series of little discussions and comments
I must admit most of the discussions have come about since losing three parents and a close aunt over the last 3 years. Trying to make funeral arrangements without knowing the desires of individuals can prove very painful for the remaining relatives if nothing has been discussed beforehand. When you are upset and trying to accept the actual death, it is extremely hard to rationally discuss such issues as where to hold the service, who to invite and where to scatter the ashes, what music/readings for the service, where to find a will and important documents. After seeing what clothes my husband picked for his mom to wear at her cremation made me realise he was going to need some help with my choice of clothes! Even issues such as whether to wear a wedding ring or pass it onto other family members can cause a huge emotional debate if left to the last minute.
We all deal with the elephant in the room so differently. Some of us like to plan and organise everything beforehand others of us don't like to think about the matter and can't be bothered about any of the arrangements. But as my mom always used to say, "whatever your age, you always feel it's never the right time to die".
Jan x
Hi Mandy
It is totally understandable you are feeling anxious with panic attacks.
You have been through a lot of complications as a result of your myeloma treatment and you are now facing more major treatment with your SCT and Kyphoplasty. It is such a shock when you are diagnosed with myeloma, but it is also emotionally hard to go through so many changes to your body, your life, the lives of your family and no doubt your future dreams.
I suffered from bad side effects after 4 cycles of CTD, with the sweats/ shivers which you mention as well as the confusion, fatigue, bone pain and infections. I lost three stone in weight due to constant nausea. I felt absolutely exhausted sleeping 18 hours a day. After the end of the cycles of treatment, I was then worrying about the unknown of the SCT and how I would cope with the procedure.
You also tend to forget how your cancer affects other members of your family. My one son's first year of A levels went badly. My other son bottled up his emotions at university and my husband suffered with stress a year after my treatment resulting in time off work. He was referred by the NHS for relaxation and therapy which helped him considerably. Perhaps you could ask for some counselling help and advice to learn different ways of tackling the anxiety which could help you now and in the future?
I hope all goes well with your treatment over the next few weeks.
Jan x
Hi Helen
I'm really sorry to hear your myeloma has relapsed. It's no wonder your emotions are all over the place, it's completely understandable.
I think it was very fortunate your consultant recommended a bmb otherwise any abnormalities of cells would not have been identified so early. At least with you quickly changing your treatment to Velcade, then this will be able to try to tackle the myeloma more effectively. When my light chains jumped from 600 to 800 after a cold virus, I asked for a bmb but my consultant just shrugged his head and said it wasn't necessary. I still don't understand why he said no ….. I'll have to push harder at my next consultation.
My consultant does think Velcade is the most effective UK drug for light chain myeloma. Hopefully, he is proved correct and you start to see a reduction in your pain and light chain levels.
Lots of hugs.
Jan x
Afternoon Ann
I would phone up your support myeloma nurse at your hospital to discuss your current treatment. Ask when the cyclophosphamide part of your CTD regime will begin, when you are scheduled to take your second bisphosphonate and at the same time you could ask whether there are going to be other drugs introduced into your cycles such as a low dose antibiotic to fight off any bacteria. Because I regularly used to suffer with cold sores when feeling low, I was also prescribed anti viral drugs to be used in case of an outbreak.
Jan x
Hi Ann
Good news about your MRI scan results showing damage to only one vertebra. Hopefully you will be able to sleep better when the bones start to heal.
You mention you are on CTD treatment and say you are taking thalidomide and dex steroids, but you do not mention the cyclophosphamide drug which is the initial chemotherapy part of the treatment. If you progress onto a SCT after your cycles of CTD are finished, then much higher doses
of chemotherapy are administered prior to the transplant.
Jan x
Hi Ann
I hope your appointment with your consultant goes well this week and you learn the results of your MRI as well as asking the many questions which no doubt you have thought about since your last visit. As regards planning lots of family events this year, before you actually book anything in advance, I would see whether you possibly suffer from any side effects from the drugs and myeloma itself. Some myeloma patients manage to sail through their treatment and continue to work, others appear to be less fortunate and suffer quite a few side problems.
The tiredness which you are experiencing at the moment might be part of your sleeping difficulties coping with your back pain, or your current drugs, but fatigue can also be a major side effect of myeloma. I still sleep 10-12 hours per night since my SCT and find I have little energy to undertake many activities during the day. Bone pain results in me not carrying/lifting any heavy items which is difficult when you try to undertake the usual activities such as shopping, cooking, cleaning and other household chores. Even pushing the vacuum cleaner around is too exhausting and causes bone pain.
Ask your consultant/nurse whether there are any local support group meetings in your area for myeloma patients/carers which you could be able to attend to discuss any myeloma issues with other people.
Do you know whether you be going through a stem cell transplant as part of your myeloma treatment?
Jan x
