Hi Les,
I’m so glad that your time in hospital went smoothly, if probably slowly due to your boredom. It’s such a good feeling when you come out of your isolation room and go home to your own house/bed.
You ask what comes next. You should have a follow up hospital appointment to see a doctor quite soon, which will monitor your latest blood results to check everything is OK with your platelet levels, neutrophils, iron, etc. Usually there is also a 100 day follow up appointment to see what has been happening to your myeloma levels following your sct.
All the best for a speedy recovery, but take things easy and rest when required.
Jan
Hi,
So sorry to hear about your Mom, but as you say she was very fortunate not to suffer with any myeloma symptoms or bone pain and was able to continue with her daily life at home for a great period of nine years.
I don’t envy you having to clear your mom’s property with all of her personal effects. It’s such an emotional and stressful time when you throw out items which you know have been loved and cherished by your parents. After clearing three properties over the past six years, we now appear to have acquired a garage and loft full of items from our parents and aunt which we couldn’t bear to throw out, but we probably won’t ever use any of them.
All the best.
Jan
Hi,
Good to read that you are feeling OK after your sct. You are doing well to have the energy and fitness to be playing golf. I think it took me a good six months after my sct before I had sufficient energy to go out. Hopefully your peripheral neuropathy will get better with time. With my present sixth cycles of VCD treatment, I’ve been suffering with lower leg/foot pain especially when the weather is cold. My consultant suggested taking daily vitamin supplements of B6 and B12 to help reduce the nerve damage. Unfortunately due to three collapsed vertebrae, my bone pain in my ribs and back never disappeared throughout the five years of remission and I continue to use pain patches and tablets.
Only this week, I noticed on an American poster which was designed to highlight common myeloma symptoms included difficulties with eyesight focus. I had never realised this could be part of myeloma. Approximately 9 months prior to my diagnose in 2010, I experienced episodes when my focus just wasn’t right for short periods of time, but fortunately following my sct, the focus problems settled down. However when my light chains started to increase again last summer, the eyesight focus difficulties started to emerge again. Before starting on VCD in October 2015, I had an eyesight test at spec savers, but the optician stated my left eye kept going in and out of focus which made the prescription difficult to finalise. My new lenses are not right, but I’m now going to wait until after my forthcoming second sct before I have another eye sight test. I hope your eyesight settles down soon.
Regards Jan
Hi,
It’s a tough decision when it’s your grandson. I suppose it depends on whether you think he still has the actual cold virus and whether he is still coughing and sneezing with possible spread of the virus. Since being diagnosed with myeloma, my immunity levels are low and I tend to easily catch a cold virus. I also know it now takes me six weeks to recover from a cold and therefore I tend to avoid contact with family and friends if they have a virus.
Jan
Hi,
My first investigations, CDT and stem cell transplant in 2010 were all financed via my husband’s employment medical insurance with Aviva. Because we knew little about cancer treatment, I think the restrictions on the policy had gone unnoticed by us until I was starting the different parts of the treatment. The Aviva policy restricted the financing of Thalidomide to six months, with no further financing if the drug was used in another future treatment. Luckily with only four cycles of CDT this did not affect me. However, the same timescale was applied to financing of Zometa, the bone enhancing drug. I don’t know what happens if you are on an ongoing drug regime of more than six months or whether there are restrictions on certain cancer drugs. When I asked to access the NHS for monthly Zometa, my private consultant stated I could not mix and match drugs via the NHS together with seeing him as a private patient. Therefore, I changed to the NHS for my myeloma care. Aviva also introduced fixed charging rates for doctors and consultants and if they charge above the agreed rate, you have a choice to pay their extra fees or change to another doctor, which can be stressful when you are trying to organise such procedures as insertion of a Hickman line within a few days.
I think the NHS offers an excellent multi disciplinary team approach to cancer care, withwho all work together to provide you with the best possible care. Under private medical insurance, you are often referred to the NHS hospitals to access their more uptodate equipment and my sct could only have been carried out by an NHS hospital with their special facilities.
I think private medical insurance is very good for one off operations like my son’s tonsillitis and my husband’s recent cataract operation, when they could be seen quickly and arrange an operation date around their employment. However, with the recent changes to the cancer drug fund and the current uncertainty whether some of the newer more expensive cancer drugs not being available on the NHS, then private medical insurance might still be a viable option, depending on whether they restrict the timeframe for use of the drugs. But once you have stopped you current medical provider, it’s impossible to get another medical insurer to cover your myeloma on a new policy.
Regards Jan
Hi Andy,
It’s good to hear that you are OK and managing with your current drug regime. Long may the drugs continue to work for you. I’ve missed reading your updates. Every time I caught a cold virus and also with the shingles virus, my light chains would rise by around 300, but after recovering from the virus the light chains would never drop to their previous levels. Therefore, I’m not surprised after all you went through with pneumonia that your myeloma levels have gone up a little. Hopefully they will plateau at this level for sometime, or even reduce a little. I’m also on a sleepless night with Dex, but have just finished my sixth cycle of VCD. I now have to wait to see whether my light chains have reduced further before I can proceed onto the second sct preparation.
Jan X
Hi, I was only 52 years old when I found out that I had myeloma. It’s such a shock to be diagnosed with any form of cancer, but especially one which cannot be cured and requires ongoing treatment. Your sister will most likely need some time to adjust to the whole situation. She will be thinking about so many different factors, which is daunting when you are first diagnosed. I know that I was concerned about the actual chemo treatment and whether it would be successful, as well as how to tell my children, parents and friends, together with how I would cope with work, finances and
For further information about myeloma, there are a number of good websites such as this one, Myeloma Beacon and a good support group on Facebook. I would avoid the many other sites because some of the information can be out of date and some can be quite depressing. There is a wealth of information on this website about the various drug treatments and stem cell treatment. The myeloma uk nurses are also available to discuss any concerns or issues with you or your sister. I’ve also found the myeloma uk local information sessions very useful to attend because you can find out more about myeloma, the treatment options and future drugs, together with the opportunity to talk to other patients, doctors and nurses.
The good news is that there has been a lot of research and developments in myeloma drugs over the past ten years which have considerably improved the life expectancy for myeloma patients with many individuals living ten years or longer. I undertook four cycles of chemotherapy followed by a stem cell transplant in 2010, which gave me five years of remission. I am currently going through six cycles of chemo which should be followed by another stem cell transplant and hopefully will provide me with more years of remission.
Your sister is very fortunate to have your care and support through this difficult period. I hope all works out well.
Regards
Jan
Hi, I think it’s normal to be apprehensive about your sct. I found myself quite emotional the week prior to my sct in 2010, mainly due to my concerns as to whether I would be able to cope with the whole process, especially the isolation and the side effects of the treatment. I found the staff and care on the Heartland’s sct ward were excellent. They managed my many days of sickness, inabilility to eat, mouth sores, bowel issues, constant tiredness and need to continually sleep without any problems. The individual rooms were well equipped with good steady temperature which was great during the hot summer months, free tv, good wi fi, fridge, with a great choice of food or snacks on request. You will be in safe and experienced hands.
All the best for the next few weeks.
Jan
Hi, Just thought I would wish you all the best for your transplant at the QE Birmingham next week. I hope all goes well and the treatment gives you a good period of remission. I had my first sct at Heartlands hospital in 2010 aged 53 years, which gave me a good five years of remission. I changed to the QE hospital in 2012 and started relapse treatment in October 2015. I am currently undertaking my sixth cycle of Velcade, Cyclophosamide and Dex, which is in preparation for a second sct at the QE this April/May depending on my light chain results in a couple of weeks time. I still might need some further cycles of VCD in order to drive my light chain levels to below the 90% reduction target prior to sct. Unfortunately, I only managed sufficient stem cells for one sct during their harvesting in 2010, therefore I still need to get through the process again after the end of the VCD cycles.
You’ll have to let me know of your experiences of your sct at the QE and what you thought of their facilities.
Regards Jan
Hi
As you probably have realised from your research, Myeloma can be very difficult to diagnose by a GP and consultants because we all can present with different symptoms, which can change over a period of time. The majority of myeloma patients show paraprotein levels in their blood, but a specialist blood test is needed to measure the paraprotein levels. However other myeloma patients have completely OK blood test results and need a specialist urine test to measure any raised light chain levels. There are also a few patients who show no abnormal results in their blood or urine.
I know what you mean about being considered to be a possible hypochondriac. It took six months of investigations by different consultants before I was diagnosed with myeloma. My pain kept moving in my body from various odd pulled muscle pains in my arms, groin and neck, to acute kidney pain, stomach, rib and upper/lower back pain. I underwent investigations for kidney stones, stomach ulcers, gall bladders, breast cancer and back pain, undergoing X Ray’s, ct scans, stomach camera, but eventually a MRI scan identified lesions in my bones which was the cause of the strange feeling of pulled muscles in different sites and 3 collapsed vertebrae. The MRI radiologist identified possible myeloma. An initial urine test identified blood, calcium and protein in my urine, but a specialist urine test was required to identify light chain myeloma.
This myeloma website has some useful information sheets on myeloma which might be of interest to you. As Tony suggested the myeloma nurses on this site are very knowledgeable and a useful contact to discuss your concerns. Hopefully with ongoing discussions with your GP, you should continue to move forward in trying to find out what is causing the various pains in your body which you present. I hope you manage to find the reason(s) for your symptoms and relief from the pain. Getting the right pain relief is also important. You also need to watch the side effects from the pain killers and their reactions with any other drugs you are taking. Initially I was prescribed by the kidney consultant with a pain killer which aggravated and inflamed the lining in my stomach which caused the stomach ulcer investigations. My father’s combined co-codamal tablets, tramadol tablets reacted with his blood pressure and oedema tablets causing him serious kidney toxicity problems.
Regards
Jan
Hi Buzz
When I was first diagnosed with myeloma on my 53rd birthday, I was completely overwhelmed by having to go through chemotherapy followed by a sct that I didn’t ask many questions about bone marrow biopsy results, neutrophils or light chain readings prior to sct. My consultant at the time didn’t answer specific questions about results, so I began to research myeloma on the web, but came across so many disheartening sites that I quickly stopped looking and focused instead on getting through the side effects of cdt followed by sct. It was only 9 months after the sct when my light chain levels started to rise after shingles and I thought I was relapsing that I began to read more about possible available treatment.
If you want to start to find out more about myeloma and available treatment, I found the local Myeloma UK information days extremely useful where you could meet other myeloma patients, a range of consultants and myeloma uk staff. After I experienced shingles, I found talking through my concerns and options on the phone with one of the specialist nurses at Myeloma uK was also very useful. The Myeloma Beacon website contains a wealth of useful information about myeloma drugs, a forum and links to other related sites.
You asked about my neutrophil levels, which have always been low since treatment. However I haven’t a clue as to what they were prior to myeloma. They tend to range from 1.2 to around 1.4, which has been a concern to me particularly as some clinical trials will not accept you if your neutrophils are 1.0 or below. But since my sct, the rest of my blood test and kidney results have always been OK.
Jan
Hi
It’s so emotional and worrying for you when you see your light chains rising so soon after a sct. However it’s early days and your levels might fall at your next test or further increases might be very small. After my sct in 2010, my light chains were 30, they slowly climbed up and down to 1900 after a long period of five years. I only started relapse treatment October last year, because my light chains were reaching their original level from 2010 when the myeloma caused three collapsed vertebrae. Generally apart from the usual fatigue and general bone pain, I felt fine with no extra bone, no kidney problems and my blood test results were good. I would think that your consultant will be taking further tests over the coming months to determine whether you do have an upward trend and to what extent, before any decision is made whether you will be discussing further treatment.
My light chain levels did not steadily rise over the five years. They fluctuated both upwards and downwards sometimes due to infections or a cold virus and sometimes without any reasons. Both shingles and cold virus increased my light chains by 300, but they reduced again over a period of a couple of months.
I hope all goes well with your next few sets of results. It is difficult when you don’t know what is happening with your myeloma.
All the best.
Jan
Hi Maureen
So sorry to hear you have both suffered with trying to shake off a cold virus, which unfortunately is so common at this time of year. At least Ian has over a month to fully recover before your next trip abroad.
I completed four, three week cycles of Velcade, Dex and cyclophospamide before Christmas, which reduced my light chains down from 1900 to 150, but because my bloods were so low I had two weeks off treatment which saw my levels rise again to just over 300. However, after a fifth cycle without the cyclophosamide, the light chains have slowly reduced to 243. Now I wait to see whether there is any further reduction after a sixth cycle before I know whether the sct will be a possibility. I might still have to complete eight cycles to reduce the myeloma levels as much as possible. The good news is that the treatment after Christmas has been easier to handle due to once weekly Velcade injections with less steroids per week so the side effects are more manageable. The peripheral neuropathy is spreading into both legs, but is controlled with some extra pain killers. I ended up being monitored on an ecg machine this week before my Velcade injection due to a heart flutter being identified with a high heart rate, probably as a result of the ongoing velcade drugs.
Hubby is going to weekly physiotherapy for his sore shoulder/upper arm, which the physio thinks is due to his poor posture whilst driving or whilst working on the computer. He is also due to see a heart consultant next week, because he has been experiencing irregular heart rhythms over the past few months and tests are required to see whether they can identify any cause. Personally, I think it’s possibly due to the stress of coping with the ups and downs of my treatment and all of the associated extra work which the carer undertakes as well dealing with his own job. The youngest son has his tonsillitis operation Easter Friday, so he will be living at home with us for a short time whilst he recovers. My elderly 96 year old father is now borderline type 2 diabetes due to the extra weight from the wonderful three course meals at his care home. Trying to encourage him to reduce his food intake is falling on deaf ears.
I hope Ian feels better soon. I’m glad you enjoyed the Carole King concert. I don’t know how you managed all of those steps. At present, I struggle with going up the stairs in our house unless I’m on steroids.
Love Jan X
Hi Bev
Following reading Margaret’s blog some four years ago, I’ve taken curcumin on a daily basis at the daily dose which she recommends. There have been some interesting comments on this site about taking curcumin. If you type in curcumin in the search box of this discussion forum and on the myeloma beacon site forum, you will find some relevant information on this topic.
If you do decide to take curcumin, please take care to use a reputable site/shop because I tried a site in America for a month’s supply with a view to reducing the cost and I ended up with fake tablets.
Regards Jan
Hi Peter
I am sorry that pomalidomide appears to be causing you so many side effects, especially if the drug is managing to keep your myeloma levels in check. It’s balancing quality of life v ongoing treatment. Living with serious side effects which make you unwell must be daunting and depressing. I’m currently on Velcade and it’s causing quite bad peripheral neuropathy in my legs as well as fatigue, muscle weakness in the legs and nausea. The pain in my one leg can be hard to cope with even with pain relief, but at least I know the treatment is only for around six months and hopefully the nerve damage should improve after treatment has finished. However, due to the nerve damage the velcade has been reduced with only one injection per week instead of twos which has helped with the intensity if the nerve damage. Can your daily pomalidomide tablet mg dose be reduced to see whether this alleviates some of your side effects?
Another possibility is to discuss with your consultant the new drug of panobinostat which has just been approved by NICE (see details under news on this website). It’s combined with Velcade and Dex. It sounds as though Velcade has worked for you in the past which is great news if you can use it again with a new drug. Depending on where you live, perhaps the MUK 8 clinical trial might be suitable (details on this site).
I hope you can find a way to maintain some form of myeloma treatment and keep a good quality of life, especially as you have already achieved a remarkable twelve years living with myeloma and hopefully will live many more years when even more drugs should be available in the UK to fight myeloma. At present, there is the promising elotuzamib drug being considered for fast tracking approval in Europe.
Regards Jan
