Hi Lizzie
There have been quite a few articles in the press over the summer months about how travel insurance companies are making it more difficult and costly for cancer patients to find suitable cover for their holidays, even when some cancer patients have been in remission for long periods.
I certainly had more difficultly this year finding suitable cover than previous years. Some of the online travel insurance medical questionnaires for myeloma appear to have recently changed and although I am currently not on any chemotherapy following my second stem cell transplant last September, because I take Tramadol and Fentanyl patches for pain relief due to collapsed vertebra from 2010, then this has resulted in some insurance companies not willing to provide cover. Other companies have offered me travel insurance, but excluded any myeloma related issues.
I’ve just booked with Fit2Travel for a 2 week holiday to Ibiza in September. My husband also has some health issues with irregular heartbeat and asthma, therefore our costs were slightly increased to cover the two of us at 230 pounds. I also looked at quotes with Saga, Insure With and Staysure which might be possibilities for you to consider. The cancer MacMillan website also recommends contacting the British Insurance Broker’s Association (BIBA) on 0370 950 1790 for the help of a qualified and regulated insurance broker.
I hope you manage to find suitable myeloma insurance cover for your cruise.
Regards
Jan
Hello Mike
Did you get the chance to listen to Radio 4’s Food programme today on Tumeric (Curcumin is an extract of the spice Tumeric), which was presented by Sheila Dillon, a myeloma patient and covered turmeric’s culinary use, history and the latest radical findings about turmeric, together with details of a myeloma patient who has taken Curcumin following an unsuccessful response to various chemo treatments. (I presume this was the lady detailed in the BMJ case study which you have detailed above.) The programme also outlines the findings from the recent BBC2 programme, Trust me I’m a Doctor on Tumeric, which reports that Tumeric might be worthy of further study as a substance with can help inhibit cancer development. If you go online to listen to the Radion 4 Food programme, you can access links to the BMJ case study and Margaret.healthblogs.org, a MGUS patient whom for many years has detailed her personal experience with myeloma and Curcumin together with a wealth of research, case studies and articles on Curcumin.
Regards
Jan
Hi Susie
I can understand your concern about whether further treatment is required with your paraprotein levels rising over the past two years. However if you do not appear to have any symptoms or organ compromise or your paraprotein levels are not rapidly rising, then it’s usually normal to be closely monitored without treatment.
It’s often a difficult decision for the consultant to make when a myeloma patient should start relapse treatment when their levels are gradually rising, but they feel fine without any new symptoms of bone pain and/or kidney issues and all of their blood results are OK. With your paraprotein levels rising, it shows your myeloma is becoming more active but we all appear to be able to function with different levels of myeloma without it causing us many problems. At the end of the day, it’s trying to give myeloma patients a quality of life as well as trying to achieve long term survival.
When I was first diagnosed in 2010, my light chains were 2300 which caused me collapsed vertebrae. Following the Sct my light chains were significantly reduced to 45 but they gradually increased over a five year period to around 1500. My consultant gave me a target of 1500 before relapse treatment would begin because he was concerned that if my light chains rose to above 2000, they might cause me further bone damage. However throughout the five years following Sct, the decision as to whether to start relapse treatment was based on my level of light chains as well as whether my blood results remained OK, and that I didn’t have additional bone pain, or kidney issues, or increased infections, or generally felt unwell or my light chain levels increased very rapidly.
What were your paraprotein levels when you started treatment some 2 years ago? Did you have any symptoms such as bone pain/lesions, kidney problems, etc at this time? Hopefully when you have an MRI scan and/or bone biopsy this will put your mind at rest as to whether your myeloma is causing you any current issues.
Best wishes
Jan
Hi Avril,
Well done for achieving six years of remission following your stem cell transplant. I can understand your concerns about mucositis which causes so much pain, discomfort and misery, because similar to your experience I also had oral mucositis during my first Sct in 2010. My mouth was full of ulcers, which made speaking, swallowing and eating/drinking very painful. The mouthwash would sting and cause irritation. I was worried about the sores becoming infected or bacteria entering the blood. It also didn’t help that the high dose Melphalan caused me severe nausea and vomiting throughout my stay in hospital and for months afterwards. I lost a considerable amount of weight due to these issues.
For my first Sct, I was advised to suck one ice pop prior to receiving the Melphalan in order to help prevent mouth sores. However for my second Sct last September, I was advised to suck as much crushed ice as possible just prior to receiving the Melphalan and continue with the ice for as long as possible.
The hospital provided a jug full of crushed ice and I munched my way through the majority of it. This time, I only experienced one small mouth sore which was such a relief. The nausea and vomiting were also managed a lot better due to a more effective combination of anti sickness drugs, which resulted in my second Sct being a much easier experience for me.
Apparently making the mouth cold from the ice helps prevent ulceration in the mouth, because the cold reduces the blood flow to the mouth by narrowing the blood vessels which in turn limits the amount of chemotherapy drugs delivered to the tissues. Perhaps you could ask your hospital whether they provide crushed ice or whether you need to take in your own ice pops/ice lollies/ice cubes to keep in their freezers, because it’s definitely worth considering sucking on ice to help prevent or reduce mucositis.
I hope your second stem cell transplant goes well and provides you with many years of remission.
Regards
Jan
Hi,
You both must be so concerned and anxious at the delay in the date for the SCT. However your husband’s body needs to be free from any virus or infection when he begins the SCT, because the whole process with the high dose chemotherapy can be quite harsh on your body. I was in the same position last year when my second SCT was planned for the beginning of June, but on the admission date I was diagnosed with the summer flu virus and prescribed antibiotics and antivirals. My neutrophils dropped to 0.8 and my myeloma levels increased which meant I not only needed some time for my body to recover before the SCT, but I also needed two further cycles of chemotherapy to reduce my myeloma light chain levels to the 90% reduction rate required for the SCT.
Your husband’s consultant will be looking for the chemotherapy treatment to reduce your husband’s myeloma levels to as low as possible prior to the STC in order to try to achieve the best possible chance of a long term remission following STC. It’s worth asking your consultant about their reduction target in your husband’s myeloma levels in order to progress onto the STC stage, this should also include the target for the plasma cells in the bone marrow.
It would be worthwhile discussing your husband’s bone marrow biopsy results and your concerns about changing treatment with the nurses at Myeloma UK, so that you can prepare your questions for when you next meet with your consultant.
All the best.
Jan
Hi Dawn
During my first cycle of Vcd, I also had a red sunburnt face which then progressed to red spots on my trunk/legs with large amounts of skin peeling off from my hands and feet. My bloods at the end of cycle one showed an infection and I was admitted into hospital for monitoring. Like Teresa’s husband, the antibiotic Co-Trimoxazole was found to be the problem causing the red face, red spots as well as raising my infection markers. Surprisingly I had taken Co-Trixoxazole/Septrin for 4 cycles when on Cdt in 2010 without any problems, but my body has now developed an allergic reaction to this drug. As soon as the Co-Trimaxozole was stopped the rash and red face quickly reduced. I also had foggy vision for a few mornings each week which was thought to be a reaction to Velcade. I’m still on antivirals some 8 months following my last Sct due to suffering with shingles after my first Sct. Luckily the antivirals don’t appear to cause me any side effects, but we do all react differently to the drugs.
It’s worth speaking to your consultant about your red rash which might be the Allopurinol or the Co-Trimoxazole. Hopefully with the help of your doctor you will be able to find out which drug is causing you these side effects. It’s really important to discuss any onset or worsening of your peripheral neuropathy (PN) with your consultant who can closely monitor and review your dosing schedule which can help keep symptoms at a low grade. Myeloma UK has a useful factsheet on PN which outlines some of the available pain relief and tips for self management.
I hope you find the second cycle much easier.
All the best. Jan
Hi Dawn
You are bound to feel upset and down at the moment with everything so new to you and no doubt with so many questions going around in your mind. I still remember the shock, fear and disbelief when I was told I had myeloma on my 53rd birthday in 2010. It’s a very difficult and stressful time. Initially I spent months crying, feeling sad and anxious about how the cancer would change my life, as well as my hopes and my dreams for the future which was now uncertain. The wide range of emotions which we experience appear to be a normal part of the process of coping with cancer. However try to reduce the stress, which in turn can make you feel awful, and try to find some ongoing support which works for you. Myeloma UK offers “buddies” to talk to. There might also be a local support group in your area.
I totally underestimated how much the cancer diagnosis would impact my husband, family, relatives and friends. My kids struggled with their A levels because they found it difficult to concentrate. My husband had to take time off work and undertake a lot of the household chores. His career was put on hold and he had the complete financial burden for the family. Looking back, I wish I had asked for family counselling so that we could all have worked together with professional, positive support and help.
As others have said, it will start to get better, but it’s important to be patient.
Regards Jan x
Hi Helen
I know what you mean about the length of time it takes to receive your chemo in hospital. When I was visiting hospital twice a week for the Velcade injection, I usually had to wait 2 to 3 hours to receive the injection, which combined with a two hour return journey made the whole day written off for one injection. I believe some hospitals are now experimenting with letting patients undertake their own Velcade injections at home just like the GCFS injections, but with the high cost of each Velcade injection then I should think compliance is a big issue.
Was it your details in today’s The Mail on Sunday article about myeloma and Pomalidomide? I thought the article contributed well in raising awareness of myeloma and offered hope with future treatments achieving longer life expectancy. Let’s hope your light chains reduce with your current regime. My fatigue has also been a big issue since diagnosis in 2010. I’ve spent most of the last few days in bed totally wiped out with a cold virus, which is my first cold following the Sct last September. I think that I caught the virus from visiting my dad in his care home. Unfortunately any cold/flu virus tends to increase my light chains by around 300 for a good couple of months before the levels reduce later, but not to their original numbers prior to the virus.
My dad has just booked tickets for December to see Andre Rieu again. His latest set of blood test results shows a strong immune system and good overall levels. The doctors don’t comment much about his levels because apparently they don’t have that much data on 97 year olds, which should change with so many more people living longer.
Take care.
Jan x
Hi Dawn
Fortunately most myeloma medications and treatments do not cause hair loss. During my 4 cycles of CDT treatment, my hair remained as usual, but towards the end of my 8 cycles of VCD treatment my normal thick hair did gradually become slightly thinner.
Unfortunately almost the majority of myeloma patients undergoing a stem cell transplant (sct), which involves high dose intravenous chemotherapy (like Melphalan), lose their hair about two to three weeks after the Melphalan. You would need to ask your consultant about using a chemo cold cap, because cold caps only block certain drugs and it might not be recommended for blood cancers. If there is a possibility of cancer cells being present in the scalp blood vessels then a cold cap might prevent the chemotherapy from maximum effectiveness.
I completely understand why you are concerned and so upset about losing your hair, which can be such a distressing side effect of treatment. We all try to cope with it differently. For me, it was important to source the right wig prior to the sct. Trying on different styles and colours of wigs was an enjoyable and reassuring experience, also your hairdresser can personally style the wig to suit you. The NHS will provide you with details of where you can locally source a free synthetic NHS wig which are good quality and realistic. I also had my hair cut a lot shorter before I went into hospital for the sct.
But as you say, the good news is that any hair loss is only a short term phase and it does start to grow back quite quickly after the sct. There’s also a wide choice of headwear available on the internet. When your hair grows back, you might find it could be a different texture, thickness or even colour. My straight, dark blonde hair grew back totally grey and curly, which was quite a shock.
Try to take everyday as it comes and focus on your treatment. It’s easier said than done, but please try not to worry about what might happen in the future.
Jan x
Hi Dawn
I had 8 cycles of VCD last year prior to my second stem cell transplant. My light chains were 1900 when I relapsed in Oct 2015, but decreased to around 190 by the time end of cycle 8, further reducing to 44 after the transplant in September 2016. For me the hardest part of the VCD treatment was nausea, fatigue, sleepless nights with steroids and peripheral neuropathy in my feet/legs, but the majority of these are temporary side effects which greatly improve or disappear after treatment finishes. I didn’t experience any back pain from the Velcade injections, however I do have Fentanyl pain patches for the bone pain following collapsed vertebrae at diagnosis in 2010, therefore I might not have felt any additional back pain.
It’s worth keeping a diary of your experiences/symptoms/feelings, because you do tend to forget over the many months of treatment. It also helps identify any patterns of side effects during each treatment cycle.
I hope you treatment works well.
Jan
Hi Helen
That’s really good news you have only experienced only a small reaction to your first infusion of Daratumumab and your second infusion wasn’t so bad. It’s always worrying when you start a new treatment because you haven’t a clue as to how your body will react to the drugs and you have to wait for the first few sets of blood tests for your light chain results. As you say, fingers crossed your light chains will show a decrease over the coming months. Hopefully as your body gets used to the infusions, then they can be given a bit quicker which will mean less time in hospital.
I had my second sct last September after 8 cycles of VCD. Following the sct my light chains were around 45, but have begun to slowly increase to around 95 last month. The results are very similar to my first sct which managed to provide me with five years of remission. The second sct was much easier due to me being more prepared, in better health and the nausea was mainly kept under control with three different drugs. However the recovery period is still very slow, with fatigue being the major battle.
It’s good to hear your Grandma had a great birthday party. My dad is due to celebrate his 98th birthday next month. He moved into a care home two years ago after my mother unexpectedly died. She was still running her own business up to the age of 86 years. In the care home there are around seven residents who have all recently celebrated their 100th birthdays. Up to the age of 95, my dad always came abroad with us on holiday. He is still very active with far more energy than I have at present. He went to the Andre Rieu concert in March at the NEC, together with a James Last concert in February. Let’s hope I’ve inherited some of his genes.
All the best for your new treatment regime.
Love Jan
Hi,
I am sorry to read about your side effects to the chemotherapy, which unfortunately can seem to take over your daily life and interfere with daily activities. You might find the next few cycles get easier or they could get progressively more difficult. For this reason, I would suggest you keep a weekly diary and write down the days you don’t feel so well and the days which are OK. You can then see whether a pattern begins to emerge. (Myeloma UK has a free diary to log down your treatments and side effects.)
After completing 4 cycles of CDT in 2010 and 8 cycles of VCD in 2015/16, I found the side effects to the chemotherapy gradually started to increase for me up to cycle 4. My main issue was sickness and vomitting from the cyclophosphamide which took months of various anti nausea drugs before some relief was found. However like you, I did experience heavy legs and muscle weakness in the legs during both lots of treatment. I had several occasions where I fell over when bending down and had difficulty for months getting up stairs. Both Thalidomide and Velcade caused peripheral neuropathy (PN) in my legs. I had pain and numbness in the feet and legs. On CDT the PN was quite mild, but kicked in very quickly after the first cycle of Velcade. If you think you have PN, you need to speak to your medical team so that they can monitor the PN and perhaps review your medication. The emotional highs and lows which you are experiencing are more than likely linked to the Dex, which tends to cause quite a few issues such as sleepless nights and higher energy levels during the days whilst taking the Dex, followed by a crash afterwards when you are extremely tired and emotional. My husband used to avoid talking to me for a couple of days after taking the Dex, because I would be so grumpy and tend to “bite his head off”, which you don’t realise you are doing. The fatigue used to increase as I completed more and more cycles.
I hope you find the chemo gets easier for you and the side effects are minimal, but remember if you have sickness, diarrhoea or constipation then they can all be treated. Don’t suffer, either speak to Myeloma UK or your hospital team.
All the best.
Jan
Hi Susie, I used to have blood tests once every week for the twice weekly Velcade injections. The blood tests are usually carried out at hospital on the chemo ward just 5 minutes prior to the injection to ensure your levels are all to go ahead with the Velcade injection. All the best. Jan
Hi Andy
You’ve done so well on 40 cycles of Pomalidomide which has managed to keep your myeloma under control. I hope the MUK8 trial works just as well for you, with minimal side effects. It’s certainly discouraging news this week that Daratumumab hasn’t been approved by NICE, especially after it was fast tracked in Europe. It’s so frustrating to know there are new myeloma drugs available, which have proved themselves to be effective in clinical trials, but are not available for patients in the UK. There is still an unmet need for patients with myeloma who no longer respond to existing therapies.
Enjoy your few weeks with no drugs. All the best for your new treatment.
Jan x
Hi Brian
It’s so good to see you are coping well with VTD and excellent news that your myeloma light chains have significantly reduced. You must be pleased with the results so far.
Your pins and needles are more than likely to be the start of peripheral neuropathy (PN) as a side effect to Velcade and Thalidomide, which you need to discuss with your consultant because the symptoms can be progressive with further treatment. I was advised by my consultant that early detection of PN, regular monitoring and reviewing dose modification were important to manage the symptoms and prevent the development of more severe PN.
During my first cycle of VCD, I experienced pins and needles in my toes, which during cycles 2 to 4 eventually developed into sensations of pain, burning, prickling and numbness in my feet, lower legs and hands, together with a muscle weakness in the lower legs. From cycle 2 onwards, my consultant lowered the dose of intensity of the Velcade in each injection and after cycle 4, my Velcade injections were reduced to once a week rather than twice weekly. I found the PN was generally worse towards the end of each week of treatment, but reduced slightly during the week off drugs.
To help with the pain and throbbing in my legs from the PN, I found keeping my legs warm helped relieve the symptoms. Therefore I found bed socks, thick slippers, leg warmers, electric blanket, throws on the bed, hot baths, thermal trousers, warm nightwear all helped as well as increasing my pain relief of Tramadol. My consultant also suggested B12 and B6 daily supplements, together with other pain relief if required. Thankfully once the 8 cycles of VCD finished, my PN has gradually improved. However, my toes still remain cold and painful on occasions, but overall the symptoms are much easier to manage.
I hope your time at the races went well. At least the weather has been much milder which encourages you to spend more time outdoors.
All the best.
Jan
