Lilib and Panda
All of us patients and spouses & offspring absolutely know how the diagnosis shakes to the core, and is totally preoccupying for some time. However it will not always be the first and last thing you think about and it will cease to be so fear inspiring. For the majority of us myeloma is more like a long steeplechase, bits of drama and difficulty followed by relatively good health,or sometimes really good health. When I was diagnosed I really thought that I was on a one way journey where I’d never feel as well as I did at the start. I was very wrong, 3 years in I feel absolutely fine 99% of the time, no one would realise anything is wrong.
If you feel that you have a rapport with your Dr, and he or she knows about myeloma, I would stay put! This disease is a long haul so relationships are much more significant with our drs so a potentially good one is valuable. Although long journeys to a specific hospital can work, they are difficult if you are feeling rough during treatment, even though the current video calls avoid us having long clinic waits & long days travelling during treatment.
Another option is to ring Myeloma UK to discuss potential new treatments. I have met UK myeloma patients who have had 7 or 8 treatments,although some of those may have been trials. Is this something that you would consider?
How awful having that thrown into the conversation…
Another option is to ring Myeloma UK to discuss potential new treatments. I have met UK myeloma patients who have had 7 or 8 treatments,although some of those may have been trials. Is this something that you would consider?
How awful having that thrown into the conversation…
Hi Panda
I agree with the good advice given by Rosary and Paula.
CNS is clinical nurse specialist, the person who you have already seen.
Myeloma UK has lots of award winning booklets and information that you can either read from this website or ring to ask them to send copies to you. The organisation really is very helpful for us patients.
I too have been refused antibody testing. My consultant is usually very obliging when it comes to testing, but says that almost all myeloma patients do have some antibodies. Almost none of us have as many as normal low levels. The problem is that the evidence isn’t available yet about what absolute level confers protection, knowing the level of antibodies at this stage is therefore likely to be meaningless and could make us over confident. His view is that the only safe thing to do is to act with extreme caution until current research is published.
It is common, but not inevitable, that myeloma patients have frequent infections. Given that you have had one recently it may be better to err on the side of caution with your GD if your dear little GD spends time in a nursery or similar environment.
If you have been diagnosed at a small, local hospital it is worth considering asking for a second opinion from a larger regional hospital. This is because myeloma is a rare disease and is complex (hence ‘multiple’). It is a fast moving field (fortunately for us) and patients can benefit from seeing drs or consultants who see a lot of us! Second opinions can be obtained to a hospital of your choice, or even a consultant of your choice, on NHS, just ask your GP. I have been very thankful that I did this.
The standard guidelines for starting treatment are if any one of the following are present, 60% or more bone marrow infiltration, high calcium in the blood, kidney damage, anaemia or bone lesions. As you have bone lesions this would suggest treatment is likely to be advised. It is always better to be diagnosed at stage 1 rather than later as less damage has been done to organs, bone marrow and of course bones.
Some people manage to continue to work through their induction treatment, others find it pretty gruelling and may need sick leave (or even early retirement) But as Paula has said, many of us eventually get back to a level of health we really hadn’t hoped would be possible.
Good luck with your job interviee & best wishes
Hi Alanp
The stem cell transplant process is always worrying both to the patient and their family, especially when all the possible risks and complications have to be pointed out by our doctors.
It is impossible to predict how much support your son will require, like every aspect of myeloma, reactions to the process are wide ranging and pretty unique. However many patients agree to undertake a second if offered, and even occasionally a third, so for many it isn’t as bad as they feared. Reactions to SCT vary from serious life threatening complications, which are exceedingly rare, to absolutely no side effects at all, which is also very rare. Most of us suffer some unpleasant side effects, most commonly extreme gastric upset, having uncontrollable diarrhea and nausea, many suffer sickness, loss of appetite and sores in the mouth (although chewing ice before, during and after the melphalan infusion can prevent this). Most significantly all of us develop neutropenia c 5 days after the melphalan and are extremely vulnerable to all types of infection until our returned stem cells have engrafted and neutrophil levels reach over 1.0 g/l. During this time we can get ill very quickly if we get an infection.
Hospital stays even without serious complications usual last 14 to 28 days.
On discharge your son is likely to have little energy, and will need to sleep far more than usual and is likely to benefit from someone else preparing meals, looking after children and pets, shopping and housework. Hospitals advise that patients sleep in separate rooms from other family members and that hygiene is taken seriously.
It is worth bearing in mind that your son will have frequent check ups after discharge, and there is a possibility he will be readmitted, so your son is likely to need someone on standby for the children until these early days have passed. (I was surprised when I was readmitted, I didn’t feel really poorly, but now I realise that the hospital were right to be cautious)
There is a protocol that uses the day of the stem cell transplant as day 0 and most people have a good recovery by day 100. As your son is young if he is fortunate, it may be much sooner than that. Eg I felt a lot better by day 37, and had had a Complete Response by day 60 and felt much better by then, although I wouldn’t have been able to return to work until later.
You don’t say how old your grandchildren are, and therefore how much care they need, but unless they are older teenagers capable of helping your son, rather than requiring help themselves, the family is likely to benefit from help, and your son from being able to distance from any infections his children may habour.
I hope that your son’s experience is straightforward and that it’s a successful step towards a long period of good health and inactive disease. I really hadn’t anticipated how well I would feel after I’d completely recovered.
Hi, I’m sorry that no one has felt able to answer your query, and that you’ve had to find our site.
We are patients rather than doctors so can’t give you medical opinion. while some of your symptoms could feasibly be myeloma, eg fatigue & back pain, & some of us did have less common for myeloma symptoms at diagnosis, I don’t think I’ve met anyone who had grinding knee pain, myeloma usually affects the trunk and/or long bones. The problem for people presenting with myeloma is that many of our symptoms such as tiredness, back pain, repeated infections, could be due to a number of conditions.
It is always terrifying to find information on the internet, especially about cancer, when you only have a few test results to go on so you are left with more questions than answers. I hope your Dr is soon able to reassure you. If not, the next test is electrophoresis, a blood test to check whether you have monoclonal proteins known as “m spike” ( which by definition are cancerous). The only absolutely conclusive test however is a bone marrow biopsy to allow microscopic analysis of the plasma cells in the bone marrow.
I really hope none of this proves necessary for you.
I use Green People sun lotion which is described as ocean and reef friendly & appears to be human friendly too. But I also try to avoid strong sunshine, wear sleeves and a hat!
Hi. I hope your partner’s SCT is straightforward & he’s soon on the road to recovery. (I felt much better within 2 months, and was leading a physically’normal’ active life again soon after). The risk of Covid, an issue for all of us with myeloma, is more pronounced after SCT. The best people to advise you though are the transplant team, as they will have developed advice based on experience since the pandemic started.
I suspect that you have gone to a local hospital. Ask your GP to refer you to your regional hospital. Major hospitals have far more experience of myeloma and it’s diagnosis ( or finding out what is wrong,if it’s not myeloma). Unfortunately it is not uncommon for it to take far, far too long for myeloma to be diagnosed. I would want to be seen by a consultant haemo oncologist. Look online for details of the special interests of haemo oncologists at your regional hospital and find one who specialises in myeloma. I hope you get the rest of the tests that you need soon.
Hi, I’ve asked a few people about this but I haven’t heard of anyone else who has been told this. Lenalidomide is a comparatively easy drug to tolerate, and is 8% more effective than thalidomide. Personally I would not want to change. (I am 2years into lenalidomide maintenance,)
Ask myeloma UK for a patient diary, this will give you information about the disease, blood tests etc.
Ask what type of myeloma your partner has, (IgG, IgA, kappa or lambda light chain, non- secretory etc) and what are the likely implications of this.
Which ‘CRAB’ features does your partner have- high calcium? Renal problems? Anaemia? Bone lesions? What treatments will be given for these?
What is the percentage of cancer cells in the bone marrow? ( Be prepared for a shock, this can be very high)
What is the proposed treatment and when is it envisaged will it start?
Are any trials available?
Is stem cell transplant likely to be considered for your partner? Where & when would this take place?
Your partner will have regular blood tests, which will cover multiple areas, an almost unbelievable number of individual results. Ask which ones are likely to be most relevant in your partner’s disease (this does vary myeloma patient to patient)
Will your partner have a named haematologist and nurse?
How many myeloma patients is the haematologist treating currently?
(If the answer worries you, you can ask his GP to refer him to a bigger hospital for a second opinion- it really makes a difference if you are treated by an experienced myeloma consultant/team despite all drs following a NICE treatment protocol) How often will your partner be seen, and will it be by the same Dr?
Does the hospital have an online patient portal giving access to test results and treatments? If not, how are patients informed about their results?
It’s good that you are planning the appointment, I hope it goes well.
Hi 4236perkins
I would raise this with your GP.
However I don’t think elevated light chains are conclusively associated with myeloma, I’ve read that they can be associated with CKD, and inflammation, both of which you unfortunately have from your diagnosed health issues.
Many myeloma patients have CKD as part of their Myeloma but in my patient experience, the CKD gets worse until the myeloma is under control, so if you have had reasonably stable CKD for a long time, this may suggest that myeloma isn’t amongst your problems. The test that flagged myeloma for me was electrophoresis, which looks for a spike of monoclonal proteins,which you could ask your GP to do (unless he or she can reassure you that your CKD explains the light chain abnormalities) but the conclusive test is a bone marrow biopsy which looks for cancerous plasma cells in the bone marrow.
Welcome to the forum. Myeloma really earns it’s “multiple” name in so many ways, one being the sheer number of prognostic factors. Yes, stage 3 is less good than stage 1, but response to treatment is even more significant. The vast majority of us have a few negative prognostic factors and a few positive ones, certainly I have. Although SCTs are standard care in UK for young & fit enough patients, increasingly in USA myeloma specialists are very split about whether they should still be used in this era of more, and more effective, treatments. SCT is not without side effects,not only at the time but things like bone marrow damage. Although I had a SCT myself, and got over it very quickly, I’m not sure that I’d have another. In my local support group we have some older members who have not had SCTs and have had myeloma for a good many years. There really is every reason to be optimistic if your husband is starting to feel better, and his light chains are dropping so significantly. (I hope his spine improves too)
Hi Miley, it is a perfectly normal, natural reaction to a diagnosis like myeloma to be shocked to the core by it, and to become totally preoccupied. One day you will realise that you forgot about it for a few minutes, then these times will become longer and more frequent. Eventually “myeloma” will loose the fear factor and just be incorporated into your mum’s life, and yours. Myeloma is more like a steeplechase than a sprint, and we don’t stay paralysed with grief and fear, you and she will find you cope with it. Some people with myeloma even feel that the diagnosis has helped them appreciate the important things in life and to enjoy the moment. That is certainly true for me whilst in “remission”.
In USA, with fully insured patients having access to personalised treatment plans and all new FDA drugs, already 14% of myeloma patients are living for 20 plus years. If you consider that the peak age of being diagnosed with myeloma is 80-90 years old, and our average age at diagnosis is c.70, ages when 20 year life expectancy is unlikely, the prognosis for younger patients (ie under 70s) seems to be increasing. Even in the UK, recent NICE/NHS approvals of lenalidomide maintenance, daratumumab, etc will enable many of us to live longer than we feared possible at diagnosis. The research into myeloma and effective treatments really is changing fast, even in the 3 years since I was diagnosed a lot has changed. CAR-T and BiTE potentially offer exciting future lifelines, and UK does world class myeloma research, supported by a world class charity in Myeloma UK.
