Hi Sandra
Sorry to hear your light chains are rising again. What sort of level were they last time and what level are they now? Presumably you provided a urine test at your last consultant’s visit? Could you phone up after Xmas and ask for your results before you decide about your visit abroad? When I was diagnosed with myeloma in 2010, my light chains were 2300 and I had suffered vertebrae damage, but my kidney functions and other results sere ok. Therefore when my light chains started rising slowly again three years ago, my consultant gave me a target of 1000 for my light chains before further treatment on the understanding that all my other results were ok. I think the difficulty is that sometimes light chains can increase very quickly and at other times at quite a slow rate.
Jan
Hi Helen
You are awake late this evening? It’s good to hear from you, but I’m so sorry to hear your light chains are increasing which must be so concerning for you. What are your current numbers? Can your current medication be increased or modified? I see panobinostat has just been approved by NICE to be used with velcade and dex for patients with two or more treatments in the UK. I’m also a fan of daily curricumin which appeared to help with my light chain numbers. When I used a dodge supply of curricumin for two months, my numbers increased then decreased after I took my regular supply. But there again it might have been a coincidence.
I’m pleased you can all meet up as a group of girls in your family to celebrate a major birthday. My dad would never let my mom go out on her own with her friends or family, especially when he retired. She suffered with bowel problems following a bug caught on a cruise ship in Egypt in her 60’s and we were always planning shopping visits around loos! My son is also happy in his new teaching job, especially with two week’s hols over Christmas, which is making my other son jealous with his standard 5 weeks annual leave. They are both home over the festivities, with hubby attempting to cook xmas dinner which will not be good news.
Thankfully my light chains are still responding to the velcade and at the end of cycle three they have reached the 90% required reduction, down from 1900 to 182, to be considered for a second sct in the new year. Although, it looks like I will continue on a fifth cycle in order to reduce the light chains as much as possible so that the numbers don’t increase much when I come off treatment for four weeks prior to attempting stem cell collection which was hard work last time with my body not responding to the injections and required an extra two weeks of further drugs. As you say, it’s the side effects of treatment which is the troublesome part of whole process. The fatigue is all consuming, apart from steroid days when the energy kicks in but the sleepless nights take over and mess up my whole body clock. The PN is difficult when the weather is cold and when my fentanyl pain patch starts to wear off on day three. I’m awake for half of that night with pain and restless legs. At present, I have hot baths sometimes twice a day, an electric blanket, leg warmers, bed socks, extra duvet and the heating is cranked up, which has fuelled the battle of the radiator controls with hubby who keeps turning them down. He is dressed in short sleeves and I’m all wrapped up! I haven’t a clue as to whether I’m constipated or have the runs because it keeps changing between the two with steroids causing lots of wind. But at least the nausea is under control with some increased Emend dosage from two tablets to three per week. My muscle weakness in the legs is getting worse and walking up stairs is now a real chore. But, I need to be thankful that the treatment is so far working and that the side effects are mostly temporary. I’ll just have to look for a warmer climate for the legs to recover their warmth.
I hope you have managed to sort out everything for Christmas and managed to purchase some interesting presents from your Christmas market trip. All of my shopping this year has been online, even the food shops. Now I need to wait for steroid days to wrap the presents. Hubby has decorated the house and takes next week off work to clean around before the lads return home.
Love Jan x
Hi Maureen
I’ve just lost my last three attempts at replying to your post and my computer is jamming again as I write. I am so happy that you are leading a more normal life now that Ian is in remission with his myeloma. You must be relieved he is only having to see his consultant every eight weeks and that his myeloma levels are holding well. A holiday in Gran Canaria will be lovely and relaxing for you both at this time of year, especially with all of the grey days we are having at the moment.
Apparently my light chain levels need to achieve a decrease of 90% before a second stem cell transplant can be considered next year. The first cycle saw my light chains drop from 1,900 to 800 which was terrific news and hopefully this Friday, I should receive my second cycle results. It’s just taking it cycle by cycle and seeing whether I still respond to treatment and how many cycles are necessary or which I can continue to tolerate with the toxicity of the drugs.
Computer still playing up and time for me to see whether I can sleep tonight after two nights of sleepless nights due to steroids.
Jan x
Hi Helen
That’s great news about your son managing to obtain a job with apple. I hope he enjoys the work and can also enjoy some music work during evenings/weekends to keep his interest and motivation going to eventually find a career in the music industry. He should be able to help you with your problems accessing the internet. I swopped my computer to an apple MacBook earlier this year on the advice of my younger son who constantly raves about the quickness of the apple operating system. There’s still a lot I have to learn to feel more comfortable using the apple product especially after using Microsoft software for many years.
The good news is that my first cycle of Velcade has managed to reduce my light chains from 1900 to 800. In order to be considered to be able to proceed to a second stem cell transplant, I need to reduce the light chains by 90% to 200 over the course of four to eight cycles of VCD. The treatment has not been without some complications from side effects. The first cycle of the treatment induced a skin rash, raised temperature and raised infection markers resulting in a 24 hour stay in hospital for antibiotic IV treatment. During cycle two, I found out that I had become allergic to the antibiotic co-trimoxazole which was causing the body rash, raised temperature and swollen throat. This is a drug which I took during four cycles of CDT five years ago with no complications, but it just shows you how our body’s reaction to drugs can change. I was relieved that the rash was induced from the antibiotic rather than the velcade, otherwise I would have had to come off Velcade. The PN in my legs and hands which kicked in during cycle one has certainly become more manageable since the Velcade dose was slightly reduced but kept to two injections per week for two weeks of each cycle. Like you experience nausea for a couple of days following cyclophosphamide, I also suffer sickness and vomiting with this drug. I tried so many different nausea drugs during my CDT treatment in 2010, but found EMend to be successful However during Cycle Two of Velcade, the sickness and vomiting took a real hold for 48 hours making it impossible to eat or drink, which certainly brought back bad memories of my first CDT nausea experiences when I lost over 5 stone in weight from being constantly sick. My consultant has increased my EMend medication and included Ondansetron which knocked me out for 12 hours, but at least I managed to get a good night’s sleep on a dex night with this drug. The myeloma nurse did state Ondansetron can cause constipation, which has been the case following just taking one little tablet on Monday. Last night I was wide awake until 5.00 am from dex, which when combined with a new 3 day Fentanyl patch which also makes sleep difficult, certainly makes achieving any usual sleep routines during the dex weeks very challenging.
The second week of each cycle is when the fatigue is the most difficult to manage, but the week off from the Velcade injections does allow you to recover a little which is such a good feeling when you have a few days relief from suffering with various side effects.
I read in yesterday’s Daily Mail about the cost of Pomalidomide treatment which the article suggests is around 115,809 pounds a year per myeloma patient, with Spain managing to negotiate to pay around 90,000 pounds a year for their patient’s treatment. I didn’t realise just how expensive this drug is for the NHS budgets, which is not good news when NICE’s decisions are based on the cost effectiveness of drugs. If the cost is more than 50,000 pounds for each extra year of quality life, then apparently the drug is not funded regardless of whether the drug works, which seems so unfair when drugs have already proved to be effective in clinical trials in providing many years of extra quality life. With the new proposals for Cancer Drugs Fund being put on hold this September because of difficulties of how the fund could be financed in the future, the article states that David Cameron has now demanded the final say on the fate of the fund because access to expensive new drugs is such a highly political issue. The article also states that the Cancer Drugs Fund was never mandated to monitor and keep any records of the thousands of cancer patients who received financial approval to take specific cancer drugs and how well they fared, which does not help future funds being allocated for new drugs when you have no
data as to whether specific cancer drugs were effective in making any difference to patient’s lives. Let’s hope the Government finds some way of financing breakthough cancer drugs next year, including Pomalidamide and other new myeloma treatments waiting to be approved in Europe and the UK.
Love Jan
Hi Andy
It’s so good to hear that you are now fit enough to be back on Pomalidamide and that you are making an good steady recovery after your exhausting intensive care treatment in hospital. I can’t imagine just how tough and worrying it must have been for you and your family over the last month. I hope the tough physio treatment manages to regain your fitness over the next few months. The effort will be worthwhile when you are able to regain your strength and ability to undertake your usual daily routine.
I’ve never thought about how the mind can be messed up whilst you are under sedation, but it’s not surprising with all of the various toxic and strong drugs which are used to help recovery. But there again, coping with dex is bad enough when you are on regular treatment. It’s amazing how your mind can’t switch off with dex and lack of sleep is so exhausting. As you say, the whole experience must have been so strange, leaving you with many mixed up thoughts, concerns and worries. I think it’s a great idea to meet up with a support group of people who have experienced similar situations. You will be able to listen, help, support and advise each other on ways forward which is going to be beneficial to both yourself and Steph when you are discussing your strange memories. I wish that I had been given the opportunity of family counselling when I was first diagnosed with myeloma. Coping and dealing individually with a cancer diagnosis is difficult enough, but you also need to consider how the diagnosis and treatment affects your partner/carer, your children and your closest family/friends. We made a lot of mistakes handling the whole situation which could have been avoided with some professional ongoing advice and support.
It must be so encouraging and motivating for you to be able to get out and get back into a more usual routine. I hope you are able to feel a bit better every day.
Jan x
Hi
I hope your father’s treatment is going Ok with VDC. I started my first relapse treatment of VDC about the same time as your dad. I have experienced a range of various side effects, but fortunately have not experienced a headache.
Both the Velcade and/or the dex might be responsible for his headaches. If you look on the Myeloma Beacon website under their discussion forum section and type in dex headache or velcade headache, there are a range of discussion topics under these two headings which might be useful for you to read and discuss with your father as regards pain relief medication which can be prescribed to help manage headaches.
Your father should take the opportunity to discuss his side effects with his consultant at his next consultant’s visit, or his myeloma nurse. They will have a wealth of experience and be able to advise him on the best course of action to help with the relief from the headache pain together with any other side effects.
I hope your father’s treatment works well and manages to reduce his myeloma markers. I have began to suffer with more fatigue during the second cycle of the treatment and look forward to next week’s rest from the drugs. Dex has kept me wide awake last night and no doubt tonight, but I know that I will be exhausted for the next three days catching up with lack of sleep. My PN has been a lot better since the dose of Velcade was reduced to try to contain any nerve damage.
Jan
Hi,
I wondered whether your husband is also taking an antibiotic with his pomalidamide? I ask because
I’ve just started on my first relapse treatment of VCD and during the end of the first two weeks I developed a full pin head body rash, with an angry red skin and raised temperature. I felt as though I was burning up from inside and ended up in hospital for an overnight stay because my infection markers were also increased as well as my temperature. My consultant stopped the Allopurinol, together with the antibiotic co-trimoxazole and the rash gradually faded. However, there was a possibility that the toxicity of Velcade was also responsible for the rash which apparently can affect 8 – 18% of patients. There was a question over whether the steroids during the first and second week contained the rash, but during the third rest week when there were no steroids then perhaps the rash would reappear during the second cycle.
During my second cycle, I was advised to restart the antibiotic during the second week and within a few hours of taking the drug the pin head rash appeared again, together with an angry red skin and my temperature instantly raised to almost 38 c. My throat started to swell and I had tingling around my mouth. Interestingly in my first treatment with CDT in 2010, I also took the same antibiotic without any reaction which is quite strange. I wait to see my consultant next week who will look at changing the antibiotic.
I hope your husband is able to continue with pomalidamide and that his rash is manageable and preventable with the use of antihistamines and prednisone.
All the best.
Jan
Hi Maureen
I think it’s a great decision for you both to go away for a few days in Harrogate and just enjoy yourselves, especially with the weather still being quite mild. Relaxing on holiday is such a good way to unwind, relax and forget about myeloma concerns.
The first Velcade cycle was eventful. The nausea medication is excellent, which was such a relief after previous CDT treatment caused me ongoing daily sickness for months. However, peripheral neuropathy kicked in after the end of week one and week two, resulting in some painful nights, but did subside during the week off. I’ve also increased my pain killers during the evenings which is helping, together with more throws, hot water bottles and increasing the heating. Hubby thinks it’s like the tropics in our house! My consultant has lowered the dose of Velcade for the second cycle to help manage the PN.
During the end of the first two weeks, I developed a high temperature, a full body rash and raised CRP levels, which resulted in me being admitted into hospital for 24 hours with antibiotics as well as drugs for low white cell count. I’ve been taken off the gout medicine, Allopurinol, which might be causing the rash. Fingers crossed, it’s not the Velcade which is causing the rash. However, the good news is that the first cycle has managed to reduce my light chain results from 1900 to 800 which is terrific news and well worth the side effects.
I now just have to get through cycle two, hopefully without the rash and the temperature returning. With any luck, the reduced Velcade will help with the PN. Unfortunately, I’m probably being taken off cyclophosphamide for a short period of time because it appears to be lowering my white cell count. It’s just taking it cycle by cycle to see whether the drugs are continuing to work, which is such an emotional process for both myself and hubby.
Jan
Hi Andy
You have certainly had an extremely tough battle to fight over the last few weeks dealing with both pneumonia and sepsis. Do you know what caused the sepsis? I can’t imagine how poorly you have been whilst undergoing intensive care treatment. Both you and your family must be so relieved that you are now on the road to recovery. Take it easy Andy. I hope your overall health continues to improve over the next few months.
Love Jan
Hi Helen
On Monday I started the first day of my cycle with the cyclophosphamide tablets and Velcade injection. It must be such a shock for our bodies to take so many different types of tablets. The nausea tablets appear to be working during the day, but not the evening. I took the drugs about an hour before taking the cyclophosphamide tablets, but at least I can ask the consultant to consider increasing the dose.
My consultant thinks not many patients have nausea from Velcade. Did the Velcade cause you any sickness problems? The round journey to the hospital, waiting for the injection and returning home took over four hours, which is fine whilst you feel OK but not something I’m looking forward to when the side effects really start to kick in. Hubby is having to take some annual leave every week in order to accompany me and drive me to hospital. The Velcade injection site is reacting with a large golf ball sized red sore patch. Do you know of any effective creams or remedies for the soreness? I woke up on the first night feeling as though I had swallowed some caustic solution with my insides burning, together with hot flushes and nausea, but it only lasted around an hour. Last night the dex kicked in and I only slept a couple of hours and battled the feelings of nausea. Therefore, today has been tiring due to lack of sleep, rather than the fatigue which will no doubt start to increase as I progress through the cycles. I’m hoping for some relief from the growing side effects during the week off from Velcade.
Pomalidomide is working well for you and long may this continue. It’s good to read that you have been able to undertake some work in the garden. We increased the size of our greenhouse last year in order to house the growing number of geranium and fuchsia plants. We moved 20 terracotta pots full of begonia plants from my dad’s house before it was sold last month and all these need to be cleared. Hubby is hoping to sort all of the plants out over the next few weeks.
It must be hard for your son to find work within such a specialist field, but he appears to be happy with his career choice which is so important.
Love Jan
Hi Maureen
You both must have been so frustrated when Ian was not allowed cyclophosphamide with his Velcade drug regime. From the last four Myeloma UK Information days which I have attended, one of the main messages from the consultants always appears to be that a mixture of three drugs is better than two drugs when treating myeloma patients. Do you think the two drug policy is Scotland’s approach to treating myeloma? If you haven’t already spoken to Myeloma UK about 2 or 3 drug regime in Scotland, then I would certainly find out some more information from them. It must be so frightening when you use up two available drug treatments in such a short period of time, especially with all of the debate about whether the newer drugs will be available for forth line treatment. But, the good news is that Ian’s light chains are now under control and hopefully he will achieve good period of remission.
Interestingly, the upcoming MUK seven clinical trial appears to be looking at the use of 3 or 2 drug regime for Pomalidomide. The trial is going to compare Pomalidomide and dex compared to Pomalidomide, dex and cyclophosphamide for relapsed/refractory myeloma patients. To be eligible for the trial, patients must have been treated with a proteasome inhibitor and lenalidomide. Presumably with Ian living in Scotland, if he needs Pomalidomide in his next drug regime, then Scotland and Wales are currently financing this drug but not England.
Commencing the drug regime this week has certainly raised some negative memories of my first CDT treatment. It’s the way the mixture of drugs messes around with your body, your emotions and side effects, but you know it’s all necessary in order to try to get the myeloma back under control. The dex night kicked in last night, which combined with the first night of my regular 3 day pain patches of Fentanyl, which also causes me lack of sleep. My head feels so light headed and the fatigue has kicked in. The nausea raises its head at night, but is controlled during the day. The first Velcade injection site has a lovely golf ball size red sore patch. Fingers crossed, my body will get used to some of these different tablets and settle down during the one week off.
Jan x
Hi Jane
You must have been so relieved to have achieved two good lengthy periods of remission following your two SCTs. Hopefully your light chains might only slowly increase after your last treatment, which would give you more years of remission. Had you previously used Velcade as part of your SCT treatment? What happened to your light chain levels after your two SCTs? What are your levels now?
Because my three vertebrae collapsed when my light chain levels were 2,300, then my consultant has always advised me that further treatment would be necessary if my light chains increased to beyond 1,000/1500 and/or my body showed other issues such as kidney damage, low iron levels, increased bone pain or constant infections/virus.
Following my treatment and SCT in 2010, my light chain levels reduced from 2,300 to under 30. For the initial 18 months, I was monitored every three months with my levels showing a very gradual increase to around 200 after one year, then 400 after 18 months. Shingles suddenly increased the levels by 300, but then reduced once my body recovered. Like you, I was then placed on a ‘watch and wait’ basis with monitoring visits to my consultant reduced to every 8 weeks. Rather than a gradual increase in levels, my light chains began to see-saw quite a bit, with my numbers going up and down by 100-200, but still with a gradual trend to increase.
Apart from a couple of colds, the flu and shingles, then my general health has been good over the past five years. I’ve experienced no further bone damage, or kidney problems, or low iron levels. My blood test results show no problems. I’ve had low neuts since diagnosis, but I don’t know what my levels were before myeloma. However over the past year, my light chain levels appear to have become more volatile with increases/decreases of around 500, reaching 1,900 at my last consultation, which could mean my myeloma is becoming more unstable. Both my consultant and myself are worried that if my levels increase to over 2,000, this might trigger further possible bone damage. Therefore a decision was made to start treatment with a view to try another SCT early next year.
Hopefully, you still might have a long time before you require any further treatment.
Jan x
Hi Maureen
It’s such a good feeling when you are able to go away and relax on holiday following successful treatment. I’m glad you both enjoyed yourselves in Ibiza, especially with Ian managing to spend some time swimming. Since my vertebrae collapsed, I find it impossible to sleep on my front or swim breast stroke/front crawl. Like Ian, I find it easier to either swim back stroke or swim on my side.
Many thanks for your good wishes. Hopefully, I will be able to have a second SCT depending on whether Velcade manages to reduce my light chain levels. I realise Velcade can cause fatigue, but it’s the cylophosphamide side effects which I’m also not looking forward to suffering again. Last time with this drug, I had so many unpleasant side effects of severe nausea, tiredness, mouth ulcers, cystitis and breathlessness, all of which caused me to dive under the duvet for the last two of the four cycles. I’m busy enjoying my last week of freedom, before the drugs start next Monday!
Jan x
Hi,
It is a difficult decision of when to restart treatment, because you want to maintain your present quality of life, but equally you don’t want the myeloma to damage your bones or kidneys. Presumably your consultant wants to take a bone marrow test and scans to see what is the level of activity in your bone marrow and to detect any bone damage, especially as your light chains are gradually increasing. If all your tests are OK including your platelets, iron levels, kidney functions, etc, then your consultant will possibly decide to monitor you more often over the forthcoming months. Light chains can fluctuate up and down which makes it difficult to predict what your results will be in your next few tests. What were your light chains before your CDT treatment? Have there been any reasons for your light chains to increase such as an infection or virus?
At present, the usual treatment at first relapse is Velcade, which can be combined with dex and cyclophosphamide, or sometimes your previous treatment can be repeated, or thalidomide added to Velcade and dex. There might also be some clinical trials available if and when your consultant decides you require further treatment. I hope your further tests indicated everything is OK within your body and that the myeloma is under control. Fingers crossed, you will be able to go away on holiday in January.
Jan
Hello Helen
I really appreciate your heartfelt good wishes, especially as you fully understand the variety of emotions and side effects which you can experience when approaching and going through relapse treatments. It’s good to read your news that pomalidomide is working for you. Long may this continue.
Approaching a new drug regime is certainly tough when you are unsure about how your body will react to the combination and toxicity of so many different drugs and whether peripheral neuropathy will be an issue. During my first line CDT and SCT treatment in 2010, the cyclophosphamide caused me constant nausea, sickness and sometimes inability to drink fluids despite trying four different types of anti-sickness drugs. However towards the end of my treatment, the doctors tried a new anti-sickness drug which worked well and has been prescribed for me this time around by my consultant, which is such a relief.
On the positive side, I thought my consultant handled and delivered the news about my relapse extremely well. During the consultation, I never felt rushed and he fully answered my questions, discussed the possible side effects of Velcade and produced a detailed sheet with my drug regime mapped out for me to follow on a daily basis. Disappointing I live too far from the hospital to be eligible for district nurses to visit me at home to administer the Velcade injections. It takes me around an hour to travel the 20 miles to the hospital, followed by the usual wait for treatment, which is OK when you are feeling fine but exhausting when on chemo. Apparently fatigue is a common side effect of Velcade, which should be interesting especially as I still suffer with fatigue following my initial treatment. I’ll keep my fingers crossed and hope, like you experienced, the side effects get better with time. Otherwise with any more symptoms of fatigue I would be better off hibernating over the coming winter months!
I also signed the petition against the move with withdraw blood cancer drugs from the cancer drug fund. It was also worrying to read this week that the approval decision on Panobinostat has been delayed for England and Wales until October, in order to allow further information to be produced as to whether the clinical benefits of the drug justify the costs to the NHS. This drug has already been approved by America and Europe. It’s so frustrating when the rest of Europe can approve and afford to pay for these new cancer drugs, but not England. Perhaps we have European rights to become health tourists in another European country?
I hope your son manages to find work soon.
Love Jan x
