Hi Andy
That’s great news and such a relief for you. Long may the medication continue to keep your myeloma in remission.
Jan x
Hi Helen
So pleased to hear your results are ok to enable you to continue with your treatment and enjoy your holiday home.
Our kitchen is almost complete, but getting up early for the tradespeople and being on constant alert to answer their queries has taken me a few months to recover my energy levels. We did think about extending the back of the house, but I couldn’t cope with living in the house whilst it was being done especially with the dust and constant mess. My dad is now in a care home, which means my brother and myself are trying to clear out his house which has just gone up for sale last weekend to pay for his care fees. My dad has recovered really well in the care home and so enjoys his cooked breakfasts with three course lunches and evening meals. He celebrated his 96th birthday a few weeks ago. However, I still get tired very easily and find that I need to listen to my body when it needs a rest otherwise I feel ill and my skin colour goes grey when I become exhausted. It’s so frustrating when you have a mountain of work to do, but no energy to tackle it! My younger son has just finished his teacher training course and wants help this week to clear his rented flat and to find new accommodation in Burton on Trent for this August before he starts his first teaching job in Tamworth in September.
Hope your taste buds return soon and you continue to respond to your current treatment.
Love Jan
Hi Vicky,
I am so sad to read about Colin’s lack of response to his treatment. It’s the news that we all worry about receiving during our myeloma struggles. You must be so exhausted and stressed with the range of emotions you are both experiencing at the moment. Hold onto your hope that Colin will be able to fight off the spikes in his temperature and be allowed home soon.
Jan x
Hi Helen
Thankfully Pomalidomide appears to be working well for you, which is excellent news. At least you are able to spend time in your holiday home and able to enjoy yourself during the warmer summer months. Are your light chains decreasing whilst you are on this cycle of drugs? Did you learn anything about future treatments during your information day? I’m sorry that an Allo is not possible. When I was first diagnosed, my brother was tested as a possible match but unfortunately there was no sign of a possible match.
I’ve just had my latest light chain results, which decreased from 1,400 to 1,036. A great result for me. As usual, the cold/flu virus in February had managed to increase my results by around 300 but my immune system managed to recover afterwards.
Love Jan x
Hi,
So sorry to hear your mom is not feeling well, especially after she responded so well to the original treatment. I think you need to talk through your concerns with the nurses here on the myeloma UK discussion site. They will be able to advise you about issues to discuss with your Mom’s GP and consultant.
Regards
Jan
That’s really good news. Ian has been through a long journey to reach SCT. I hope all goes well.
Regards
Jan
Hi,
From experience, the test can take up to two weeks for the results to be returned to your consultant depending on where the results are analysed in the UK. Usually, both a blood and a urine sample will be tested during the diagnosis of multiple myeloma because some proteins, such as the Bence Jones proteins (free light chains), may not show up in significant quantities in blood samples, while those with only intact immunoglobulins may not have the abnormal protein in urine.
My protein levels in my blood are absolutely normal, however my urine tests indicate abnormal levels of light chains are present and currently rising due to the myeloma becoming more active.
Regards
Jan
Hi,
Sorry to here about your Dad’s continuing back pain. When three of my vertebrae collapsed in 2010 whilst sleeping in bed, I couldn’t move at all for 10 days. I lay on my back in bed for some relief, but managed to gain bed sores on both heels, together with losing a fair amount of skin on the bottom of my feet from the pressure of remaining on my back in bed without movement. After 10 days, I hobbled with the use of a walking stick and wheelchair to see a generalist consultant as part of the long four/five months diagnosis stage to find out what was wrong with me and when he saw me walking with a stick, he recommended an MRI scan. It was the radiologist who identified myeloma due to the collapsed vertebrae and lesions in my bones, because the consultant was more focussed on diagnosing either breast cancer from my rib pain or gall stones. Therefore, you are right that some of your Dad’s answers should be revealed from the MRI results.
For a month after the vertebrae collapsed resulting in me losing 3″ in height, I was referred to a myeloma specialist who recommended fentanyl pain relief patches, together with Tradamol tablets. However, for the first couple of years after my SCT, I spent a lot of time relaxing on my bed because I found dining/kitchen table chairs too hard and the settee too soft. I walked with the use of a stick, but could not walk far without suffering back pain. I think that due to my lack of exercise and spending a lot of time in bed propped up with four pillows, my back didn’t get into the right posture to help me relieve my pain. Initially, I found lifting objects such as bath towels, hairdryers and a full kettle just too much pain for my back. However over the last two years, I have become a little bit more mobile and as a result the pain has reduced a little and I have managed to reduce the Tramadol tablets to around 2 per day and only use the walking stick as necessary. I don’t feel spaced out with this pain relief, but I know my husband only has to take one tramadol tablet and he feels the room is spinning. Even five years after diagnosis, if I become too tired or try to do much physical work, then the pain increases and I have to rest. I am probably active now for just a couple of hours a day, before I have to sit down to relieve the pain. I still can’t push a vacuum cleaner around, mow the lawn or carry shopping, but I won’t be losing any sleep over these activities and the internet can provide most of my shopping items. I have to be very careful not to lift any objects over a couple of pounds in weight, otherwise my back starts to ache.
It has taken me four years until I am now able to sleep on both of my body sides in bed, but I am still unable to sleep face down due to pain in my back. My consultant did mention the option of using cement fillers inbetween my vertebrae to help relieve the pain and regain my height, but after going through the chemo and SCT, I opted to leave well alone.
I hope your Dad finds some answers to his back pain because it’s so miserable being in pain for the majority of your waking hours.
Regards
Jan
Hi Tracey
You need to find out what is causing your husband’s leg pain, therefore I would suggest you certainly contact your husband’s consultant or the hospital team dealing with your husband’s treatment to talk through your concerns. Another consideration is to speak to the myeloma nurses here on this site about your husband’s leg pain. If you speak to the myeloma nurses, they can also talk you through your husband’s diagnosis and treatment, together with offering you a wealth of information about myeloma, which should answer most of your questions, as well as provide you with advice on what you should be asking your husband’s consultant.
I hope you find some answers to your questions.
Regards
Jan
Hi Richard
Sorry to hear about you having to start a new treatment, especially with you experiencing so many negative side effects from the drugs. It does bring back vivid memories of my experiences with 4 cycles of CDT. My concentration levels were so poor. I couldn’t even fill out an easy passport renewal document without making mistake after mistake. I had to ask another family member to complete the form after my five unsuccessful attempts. At the same time, I was trying to sell my franchise business due to the myeloma and I couldn’t focus on drawing up accurate business contracts, financial forecasts, interviews with prospective buyers, etc. I hope you manage to find ways of successfully revising for your exams. You might need to seek help with trying different revision techniques to help you remember the information such as using visual aids, different coloured revision notes, listening to your revision notes, etc
When you take your actual exams could you ask whether there is any special consideration offered due to your new myeloma drug treatment affecting your learning capacity and exam performance? In the UK, you can apply for extra time or sometimes extra marks if you are suffering with ill health, learning difficulties or other problems which might affect your exam performance?
Jan
Hi Helen
It’s good to hear your news that pomalidomide is still working for you and yes, I totally agree with your comments that the longer you can delay treatment then the more chance there might be of new drugs/treatment being available in the future. Although having the flu for five weeks must have been exhausting and difficult for you, especially as you were also going through a colonoscopy as well. What was the outcome? I should think organising the holiday home provides you with a positive focus, but it’s also not doing too much to wear you out whilst your are still recovering and coping with your fatigue.
I’m currently suffering with another cold, following the flu in February. I think it’s because my life has been too hectic over the past couple of months as compared to my usual daily routine. Our kitchen is currently being refitted, which involves so much hassle, dust and disruption, especially with no sink/tap downstairs and different tradespeople in the house all day for a month due to problems/delays. My 12 hours of sleep per night have been totally wrecked with the early starts of the fitters, which hasn’t helped with my fatigue. At the same time, my elderly father (95 years) was admitted to A&E with ill health associated with kidney problems. Thankfully after 10 days in hospital, he is now recovering in a nursing home for a month’s respite. It appears his medication for blood pressure and pain relief for his back problems was too toxic for his kidneys. I now have to sort out a care package for him at his home within the next 2 weeks.
After my flu in February, my light chains increased as predicted by 300 to 1,400. I had hoped this result would improve by my next hospital visit in May. However, due to the constant visits to my father in hospital, his care home and combined with lack of sleep, I’ve now caught another cold this week which is not good news because my light chains will probably increase even further. I just need to stay away from colds over the next few months in order to give my body chance to recover. However, care homes and hospitals are not the places to visit on a regular basis when you have a low immunity.
Take care.
Love Jan x
Hi Robert
Sorry to hear you also had the flu virus. I hope you recover speedily, although I must admit that it’s taken me a good four weeks to feel my energy levels returning. Hopefully, you will not see your light chains increasing, because you have some time for your immune system to recover before your next appointment in June. However at your next hospital visit, it’s still worth mentioning to your consultant that you had a virus in March, which will be considered as a possible reason if your light chains do increase a little.
My father had the results of his blood tests today, which showed his B12 levels were OK but his kidneys were only functioning at 18%. He now has to wait for a hospital referral to see a kidney consultant. At least he now has a reason to why he has been feeling poorly, tired and being sick.
Regards
Jan
Hi Robert
I hope your b12 injections are continuing to work for you.
As expected my light chains increased by over 300 due to the flu virus. Hopefully in the next 8 weeks they might decrease in time for my next hospital visit. I asked my consultant again about measuring my b12 levels, but was told that this was not routinely available when my blood cell count and kidney functions were ok. Which is a shame because my haemoglobin levels are falling slowly to 11 and my neuts constantly remain low at 1.1 to 1.4.
My elderly father has just been diagnosed with non iron related anaemia and part of his further blood tests are to monitor his b12 levels and his kidney functions.
Regards Jan
Hi Janet
I still wear bed socks throughout the day and during the winter months at night in order to help with my cold feet. My SCT was in 2010. My concentration took around 18 months to resume to almost to normal, with my memory loss taking around two years to recover. I remember trying to pay for some items on my debit card in a shop about two years after SCT and I couldn’t remember any of my PIN codes for my debit or credit cards so all the items had to go back on the shelves. Even now, I will suddenly have a blank moment with a PIN number. I was in Sainsbury last year and I had tried my Barclaycard twice before the machine warned me that I was on my last attempt. The checkout assistant rang her bell for assistance and I was accompanied over to the customer care desk for a final attempt. Luckily I remembered another card number. I also tried to fill out a passport application form five different times, until I gave up and asked my mom to complete it for me. Even now, when I write a cheque on behalf of my elderly dad, I will write the wrong year or sign the cheque when he should be signing it. Doesn’t sound too bad, until you realise it took me four attempts last month to complete the cheque correctly because he kept interrupting me and I kept losing my concentration!
Hope your memory gets better and your supply of thermal/bed socks gets bigger.
Regards
Jan
Hi, I know exactly how your husband feels about not being interested in food. I weighed about 11 stone prior to being diagnosed with myeloma in 2010, but the weight just fell off whilst I was going through chemotherapy and following a SCT, with my weight reduced to 6 stone. My body looked a mess and finding clothes to fit was difficult. Most of my lack of interest in food was due to feeling and being sick for the majority of my treatment, but for 10 days after SCT I couldn’t even keep liquids down. You just don’t feel hungry and with the lack of taste, most food is like chewing cardboard! I did find that I could taste food which was high in salt, sugar or if sour. Meat left a chemical taste and even sugared drinks tasted terrible. I didn’t drink tea or coffee for three years due to the strange taste it left in my mouth. I found that I could eat tuna on toast, yogurts, custard, rice pudding, some baby meals, orange ice lollies, but that was about all. You need to speak to your husband’s consultant about trying different sickness tablets until he finds one which works.
Eventually after the drugs finished, my appetite slowly returned and my weight resuming over a three year period to over 10 stone. I still tend to pick at my meals and don’t enjoy food as much prior to the myeloma. Many years ago, my mother lost her taste buds for over 5 years due to a severe cold virus. She joined a discussion forum and a university research project which investigated many different ways of trying to get the taste buds to return. She did find zinc tablets helped her resume her taste, but she had to be careful with the doseage. Unfortunately, it’s just a waiting game until your husband finishes the drugs. He will probably just eat small meals for sometime. Try to speak to your GP about prescribing the flavoured fortified drinks, which might help him maintain his weight.
Regards
Jan
