[janwParticipant]

Hi David,

I hope your new treatment works well. I’ve read such good reports on the Myeloma Beacon site about Daratumumab. My consultant in Birmingham is also quite excited about this new drug, which is supposed to have a good response rate and well tolerated, but only available in the UK on the clinical trial which you are undertaking. If you find any other myeloma patients undergoing this clinical trial, please keep us posted about your experiences. Fingers crossed, it’s a new drug which will provide myeloma patients with good periods of remission.

Regards Jan

[janwParticipant]

Hi Robert

I can really understand why you are so pleased with your blood test results. Your drop in paraprotein level is excellent. Fingers crossed, your next results will be just as good. The B12 injections have certainly managed to raise your B12 levels. Are further injections going to be necessary to maintain your B12 levels, or was the one-off course sufficient? Do you know the actual strength of the injections?

I’m due to see my consultant this Thursday for my regular check-up. My neuts are still low at around 1.2 and my haemoglobin levels are dropping slightly, so I would like to know my B12 levels. However, I know my light chains will have increased significantly this time due to me suffering from the flu for the last three weeks. Hopefully, the light chains will reduce over the next couple of months as my body recovers from the virus. I think its been around 30 years since I last had the flu and I forgot just how rough, tired and poorly you feel! Like many others, the flu injection was not sufficient this year to protect me from the virus. It was totally my fault that I caught the virus, because I was complacent and sat in a GP’s waiting area for 20 minutes whilst the area was full of adults and children with coughs, sneezes and bugs. I was taking my elderly father to see his GP and with hindsight, I should have asked my brother to accompany my father or I should have waited outside.

I hope you relax and enjoy yourself over the next three months.

Regards
Jan

[janwParticipant]

I’m so sorry to hear your news about your dad. He always sounded so positive about life and his treatment. My condolences to you and your family.
Jan W

[janwParticipant]

Hi Helen

I always used to rely on my relatives for my knitwear, but unfortunately they all had to give up knitting due to arthritis in their thumbs and the weight of a garment just made the pain worse. I’ve tried to learn how to knit on many occasions over the years, but with no success.

My light chains are still going up and down, with the overall trend still slowly increasing. I managed to escape further treatment this January because my last light chain reading had fortunately decreased a little. However, my next reading will shoot up due to a cold virus over the last couple of weeks which usually increases my light chains by 300. Fingers crossed, the readings will then fall a little once my body recovers from the virus.

Love Jan x

Love Jan x

[janwParticipant]

I’ve been on multi B vitamin tablets for the last four years. Haven’t a clue whether it makes any difference. I also read the report on myeloma patients with lack of B12.

Jan

[janwParticipant]

Hi Helen

You certainly keep yourself busy with the wedding and now a holiday cottage, together with a house move. I’m exhausted just thinking about all of the work involved! At least the holidays should be relaxing.

That’s great news about Pomalidomide working for you, with your light chains reducing well and your neuts looking a lot healthier. There appears to be quite a few new drugs in the pipeline, but it takes ages for them to go through clinical trials and then seek approval. Hopefully, Pomalidomide will work a long time for you before you have to start looking for other treatments.

Love
Jan

[janwParticipant]

Hi

I’m sorry to hear that your husband has been diagnosed with myeloma and has been suffering pain in his kidneys, ankles and feet. However, now that he is being monitored by a myeloma consultant, he will have his blood and urine regularly tested to determine whether he has any causes of concern such as raised calcium levels, kidney problems, low haemoglobin levels and any possible bone lesions/fractures which could be the reasons to his aches and pains. Presumably, your consultant will also have the results of any x rays/scans/tests carried out during your husband’s recent A & E visit for possible kidney stones. Because the symptoms of myeloma can vary so much from one person to another, it’s important your husband discusses any health concerns, pains and infections with his consultant, so that the consultant has all of the relevant information to decide on the next course of action.

For six months prior to my myeloma diagnosis, I suffered with acute kidney pain together with other severe pain in my ribs, back, chest, which I found out were all associated with my myeloma. However in order to reach the myeloma diagnosis, I went through a variety of tests by different consultants for possible kidney stones, inflammation of the stomach, breast cancer and gall bladder stones/sludge. It was only when three vertebrae collapsed, that an MRI scan showed evidence of other bone lesions which led to the diagnosis of myeloma by the radiologist. I quickly learnt that if I carried or lifted objects above a couple of pounds in weight then my pains would increase especially my side, ribs and back. I have gone through initial myeloma treatment, followed by a stem cell transplant, but I still take strong pain relief which helps manage the pain in my bones.

I hope all goes well with your husband’s next visit with his myeloma consultant and that he manages to find some answers as to why he is suffering from his aches and pains.

Regards

Jan

[janwParticipant]

Hi Robert

I think it’s really good that your vitamin B levels are being monitored. I don’t think I’ve been told mine or my other vitamin levels such as vitamin D. I asked whether a B12 supplement would help boost my consistently low immunity levels, but didn’t get much of a response. I now take a multi B supplement on a daily basis which doesn’t appear to have helped my immunity levels.

There’s a general article in today’s Daily Mail on supplements, which states “as we age, the gut becomes less able to absorb vitamin B12 – found in meat, fish, cheese and eggs. Lack of vitamin B12 can lead to larger red blood cells and in turn can lead to tiredness, depression and memory problems which can be treated with B12 injections”. I wonder whether your blood test results showed a low red blood cell count or low haemoglobin levels? Perhaps your consultant will provide you with a print out of your blood test results prior and after your B12 injections, then you can ask whether the B12 injections have been effective. If you find out any more information, please let us know.

Regards
Jan

[janwParticipant]

Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to patient. Your consultant is the best person to ask about going to France because he/she will have your husband’s latest blood and myeloma results, together with a proposed action plan for his treatment.

I know that I wasn’t fit enough to consider travelling abroad for a good two years after my stem cell transplant. However, my consultant suggested the average recovery time after a SCT is around three months. But I did struggle with the side effects of the drugs with constant nausea, fatigue, shortness of breath, bone pain, muscle weakness, constipation, water infections, etc. Therefore, I was always going to take longer to recover than those patients who sail through their treatment without any problems.

Four years after transplant and my immunity levels are still quite low, therefore I’m not too keen on being stuck on a plane for hours with various bugs being recycled especially during the winter months or school holidays. A common cold will push up my light chains by 200 – 300 and it takes me a good six weeks to recover from a virus, which immediately goes onto my chest.

I hope you both manage to sort out your property in France.

Kind regards
Jan

d

• This reply was modified 9 years, 10 months ago by  janw.

[janwParticipant]

Hi Andy

That’s wonderful news for you Andy. You must be so pleased to see your myeloma levels reduce to their lowest levels since 2011. Is this usual with Pomalidomide, i.e. does it take a long period to show results and can you expect your levels to drop even further?

Kind regards
Jan

[janwParticipant]

Hi,

When I was diagnosed with myeloma in 2010, my kids were aged 17 and 19. Both were taking their mock exams, so we were concerned about how the news would affect their studies and their lives. Being a bit older than your children, they did ask a number of questions and although you try to be honest, upbeat and positive, you forget they pick up on your emotions, your frequent visits to hospital, your side effects from the drugs, as well as conducting their own research on the internet.

Our older son was distracted because he had just started his first relationship at the same time that I was diagnosed. His girlfriend used to work for me as part of my business and therefore she knew what was happening as regards my health and could offer him some support. He also started university just after I completed my stem cell transplant and began living away from home in student accommodation. However, our younger son’s life was turned upside down: his brother was moving away from home; his first grandparent had just died unexpectedly; his close aunt had been given six months with bowel cancer; I had myeloma; he lost his part-time job/income from helping out in my business because I had to hand the business back to the franchisor; and my husband had to take over most of the household chores, together with driving my son to his sporting activities. Although you try to keep most of your serious discussions about myeloma when you are on your own with your partner, you also tend to forget the many telephone calls with friends, visits by relatives and neighbours and general questions by school parents when you end up talking quite a lot about the subject. As a result, we underestimated the impact on our younger son. He didn’t do very well in his AS exams and the school wrote to us suggesting that if he didn’t study harder then they would consider asking him to leave school. We realised we should have informed the school a lot earlier about my myeloma in order that they were fully aware of the situation. Once we spoke to them, the teachers were extremely supportive and provided regular monitoring of his academic performance. He went onto achieve good A level results.

Looking back on the situation, we tried to handle the matter as best as we could but you do tend to focus on getting through the myeloma rather than consider how the whole family will cope with the situation. Everyone in the family needs support to get through a very difficult and stressful time, not only the children but your partner who usually becomes your carer. My elderly parents also found the diagnosis and treatment very upsetting. They helped out a lot with looking after the kids, shopping and visiting me. I think there should be some family counselling offered to cancer patients, because although we try our best, there are obviously preferred ways of discussing and handling all of the issues around living with cancer.

Kind regards
Jan

[janwParticipant]

Hi Amanda

I remember very clearly finishing four cycles of CTD in 2010 and after some blood transfusions, feeling much better. Coming off the drugs meant my energy levels returned and I lost many of the side effects of nausea, constipation and muscle weakness. However, like you, I then began to worry about the next stage in the procedure of the stem cell harvest, the high dose chemotherapy and then the return of the stem cells. I cried myself to sleep on many nights mainly for fear of the unknown and whether the procedure would be successful. Therefore, I can fully understand how anxious and concerned you must feel about these next steps in your treatment. As Tony has mentioned, you need to stay positive. Try to focus on the reason for undergoing a SCT which is to try to achieve a long term remission. This website offers a wealth of information about what to expect prior, during and after the transplant. Some patients appear to sail through the process without many side effects, where as others suffer from a range of symptoms including nausea, fatigue, mouth sores, etc.

Personally, I found the four cycles of CTD exhausting, with constant fatigue and nausea. The stem cell transplant was painless, but left me feeling extremely fatigued. I slept through most of my time in hospital, couldn’t eat for ten days and generally felt poorly. After 16 days in hospital, I came home and slowly recovered over six months. But I still sleep 12 hours a day, take morphine medication for my aching bones and get tired quite easily. On the positive side, I have managed to achieve over four years of remission, which would not have been possible without a SCT.

Hope all goes well.

Regards
Jan

[janwParticipant]

Hi Helen

A painful BMB is not pleasant, even the bruise afterwards can make you wince with pain when you turn in bed or sit back on a cushion. I hope your house survey goes well. I don’t think I could face the effort and energy required to move house again, especially with the large quantity of junk we have managed to accumulate over the years.

My light chains have been see-sawing for the last couple of years, with an overall upwards trend. I reached the review point for further treatment when my results were 1,o00 about a year ago, but unexpectedly the next two tests showed a decrease to around 700 which gave me some more time and my skeletal x rays showed no further damage since my diagnosis in 2010. I’d love to know what causes the light chains to reduce so significantly for no apparent reason. However, my results last month showed by light chains at 1,140, with some reduction in iron levels and neuts to 1.1. I’ve never had high levels of neuts, but have managed to stay within a range of 1.2 to 1.8. I’m hoping my neuts will keep above 1.00, otherwise I would be excluded from some clinical trials. My consultant is happy to let my light chains reach 1,500 so long as my blood results are OK and no other bone symptoms are evident.

Every couple of months, I’m on tender hooks to know what the next set of results is going to reveal.

I hope you cope well with Pomalidomide, which appears to be a promising drug for myeloma.

Love Jan x

[janwParticipant]

Hi Jeff,

I hope your operation on Monday goes OK and offers you some relief in your pain. I’m so sorry to read about your arthritis. Last year, my elderly father suddenly started to lose his mobility. Eventually after nearly nine months of investigations, scans, tests/MRI, he was diagnosed with arthritis in his lower spine which appears to cause him pain down both legs. The bones in his central spine have slipped causing pressure on the central nerves running within the spine, hence he gets quite a lot of pain. His pain killers have been steadily increased and he now seems to manage on 4 hourly medication. However, he appears to suffer no side effects with his tramadol and co-codamol pain killers.

For the last six months, I’ve been taking my dad to see his GP and consultants on a regular basis and home life has also been hectic with two sons organising rental accommodation for a year with their different jobs. Therefore, I haven’t managed to concentrate on reducing my fentanyl patches again. I have tried to reduce my tramadol tablets, but the bone pain increases and like you, I then tend to suffer with sweating. However, my light chains are slowly increasing again and part of my original myeloma symptoms were hot flushes and sweating for a couple of years before my myeloma was diagnosed.

All the best for Monday.
Regards
Jan

[janwParticipant]

Hi,

Going through the process of a stem cell transplant is quite different for every patient. Some individuals sail through the recovery period feeling a little weak or fatigued, where as other people find the recovery period to be quite slow before their energy returns. However, you are normally only released from hospital following a stem cell transplant when you blood results show that your immune system is recovering and that you are sufficiently well enough to go home. You just need to keep an eye on your temperature for any possible infections whilst your immunity is recovering and try to stay clear of anyone with a cold or infection.

I think you will have to see how your relative copes with the whole process and try make arrangements to provide the necessary support and help with daily tasks such as shopping, cooking, cleaning, ordering medicine/drugs, etc. Perhaps ensuring the fridge and cupboards are stocked with the basics of bread, eggs, milk, etc with some ready meals in the freezer. I know that I felt completely shattered for the first week after the stem cell transplant, sleeping for 20 hours a day with hardly any energy to talk, concentrate for any period or read/watch TV. It took me weeks until I could manage the stairs in the house due to fatigue. I could slowly shower/wash, but it took ages and left me exhausted. Even handling towels was heavy and difficult. I welcomed the help from my husband and family to provide a good supply of drinks and food when required whilst I slowly recovered. I did not eat much for several weeks, but having a choice of some simple food like yogurts, fruit, a variety of drinks, ice cream and light foods such as cheese or egg on toast were much appreciated. It took me a good three months before I was mobile for a few hours a day and able to carry out basic tasks. However, some myeloma patients are able to return to work three to six months after their transplant. We are all so very different.

I hope all goes well with your relative’s treatment.

Regards Jan

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