Hi Carol,
Very few people achieve complete remission with the most stringent tests, many do not even loose their M protein/ FLC completely, and I have noted at my treating hospital, (well known) it seems some people after SCT do have some level of maintenance aimed at pushing the remaining levels to a complete remission or a lower stable level.
The aim is best quality of life with minimal problems from the myeloma and it is great to be drug free which clearly should be the aim of life after the SCT. But looking at research it seems that 10 year survivors are not only those who have had SCT and been free from other illnesses, but those who had no /few cytogenetic abnormalities and had break periods from drugs.
A lack of an agreed international consensus on treatment employing cytogenetics data and disease staging information means individual hemato-oncologists in the field follow their own philosophy in regards to treatment. In the USA they have more flexibility if they can convince insurers/ drug companies. In Australia and UK there are ‘rules’ as what the system will pay for. I suggest you look at the Beacon website- their poll shows how much induction treatment varies globally.
I am sure if induction regimes were less variable and more tailored to individuals we might be clearer on how to achieve better outcomes for patients. It is a matter of luck to be diagnosed early with MM as it is to get treatment that is optimal for individuals.
Hi Mavis
Like you I have lots of lytic lesions etc. and have at different periods of time had bone symptoms from disc fracture/collapse from the myeloma, most recently a new area of the spine has been giving serious pain so I cannot sleep. I do not wish to be drugged and have tolerated spinal pain all my life, so continue to try and ‘live throught it’, but that is my personal approach and I think others should take pain medications if that helps them. But yes like you I find it seriously impairs my quality of life and ability to do things I once could easily manage.
In my case I note when the myeloma is active e.g. before treatment or on recurrence after treatment, bone lesions and bone pain arise more readily. Like you I am not having SCT, but have not been in complete remission, only a VGPR. I have not been on zometa or an equivalent as to now.
If you do not mind my asking, as you have stated, after some radiotherapy to a plasmacytoma and 6 cycles of CDT you have remained in complete remission for a few years now. Is that with no M spike, normal free light chain levels, less than 10% plasma cells in Bone marrow etc? Have you had new lytic lesions develop since your remission?
It is very unusual for people to stay in remission without maintenance drugs for a period following complete response. Drugs are given even when people have SCT after the SCT, so I am curious as to your oncologists philosophy/ approach to treatment of your myeloma which has resulted not only in a complete remission but drug free for years. This is great.
Dusk.
Social Services apply their own assessment and threshold for services. It helps if the GP and other health professionals involved with your mother’s care writes to social services referring her for help giving details of the care help she needs with having her illness. A means test is also applied, based on income and savings. Anyone can buy care services privately.
It is the same when your mother moves in with you when you yourself are unable to provide the level of care she needs, you would be asked to state what help you can provide. But often people who look after a parent like this find they might be given little help until a crisis occurs, the constraints on budgets now has pushed things in this direction. Also it helps if your mother herself can indicate the tasks of daily living she cannot manage without help.
Being a carer is a demanding job and many find getting help from social services very difficult in the situation you describe. The new Care Act legislation allows carers to seek an assessment to be offered help in their own right. You will need to persist and if necessary challenge decisions if your mother’s needs substantial care.
DSX very good of you to post this at a difficult time for your family. Your SIL had a very difficult time overall. Do you know what her treatment consisted of?
You do not mention what her stage of disease was or her age. Sometimes these things also can play a part in how the body copes with what is an effectively aggressive treatment regime. Sometimes we need all to recognise that not everyone has an easy ride with this disease, I also fall into this category. Your point about being vigilant about your blood results and persisting with the doctors for supportive treatment is important.
Dusk
Dear Janey
So sorry to hear about your dad and the problem of trying to work out what is happening when you are not being informed. Having Power of Attorney for Health and Welfare for your father in a time he is confused would have given you the right to get information on his behalf.
Some infections can cause confusion. Is he still on antibiotics of any sort, as I assume he would have been put on them if taken into hospital? He would have to discontinue treatment if there is still any sign of infection.
Who has refused help at home for him? He should and yourself be assessed for support needed before discharge if he is in need of this. You could contact social service: means testing applies.
If he is terminally ill then usually hospice / palliative care would be discussed. So you may need to persist in finding out what is expected in terms of his ongoing care and treatment at home.
hlpb- just to add your mother’s age may mean osteoporosis could weaken bones from both natural age changes in addition to the steroids used in treating myeloma. So it is morey complex to think about risks for for individuals. Lesions alone are not the issue. I expect in your mother’s case it is a balancing act which way to go in the decision for her personally.
I think this is a complex issue when adults have a history of not robust dental health / oral hygeine and then have chemotherapy, as this is when research suggests risk of ONJ is greater. Extraction of one suspicious tooth before zometa does not mean another will not give problems later during treatment.
Also the risk in relation to fractures is not absolute. It is about treating a population of people with MM with bisphosphonates to reduce a risk of fracture in the population as a whole. Some people start off with stronger bones, others have weaker bones or multiple bone lesions which strengthening of bones would benefit. Myeloma specialists also point out that zometa has a potential small anti myeloma effect and increases survival by a little.
As with any preventative treatment the benefits will outweigh the risks for some individuals and not others due to side effects and their pre-existing state of disease/ health. That is why it is important to look at the whole picture as an individual trying to make a decision and then accept the decision.
Dear Val
Sorry no one responded to you and that you are unhappy with the information / treatment from current consultant.
Have you asked questions of the consultant as to what he means by ‘body is quite resistent to chemo…’ I assum he is talking about paraprotein / free light chains not going down much, but you need to ask. How many chemo sessions were originally scheduled? Not evrryone has 6 or less sessions before SCT, the decision is made on whether a further MM reduction can be made by extending the treatment, or for other clinical reasons to delay SCT. You need to ask more questions to understand your consultant’s approach to treatng your husband.
No consultant of worth would be offended by your wish for second opinion. It takes a little time to get an appointment at a new place and they will want all the previous clinical information to assess your husband. I would insist with your consultant he requests the Royal Marsden and explain your choice- your reason is valid. If you nhave a supportive GP the GP can also make a second opinion referral if the consultant insists on UCL.
I think, but cannot be certain, that most clinicians would see your husband after he has completed a course of treatment, so they can assess the results themselves and you can ask about what further options are possible and why they would be of benefit to your husband in particular.
Good Luck.
Good luck
Dear Vicki,
sorry your consultation was so negative. Where is Colin being treated? You could ask to be refrred elsewhere for second opinion. It is evident that not only is MM a very individual disease in terms of its behaviour, but there are no real ‘rules’ as to how to treat it, so it is guessswork, save the guidance from NICE, whch the NHS staff will follow, unless you are eligible and can get onto a trial to try some
In the UK the options for ongoing treatment are not that extensive and each specialist has their own take on how and whether to offer an expensive treatment to someone. Although in the USA medical insurance is key to getting approval of treatments, they do seem to be more clear about the differences in approach taken by the leading institutions at the forefront of treating MM. There are more experiments with new treatments, e.g. monoclonl antibiodies, if you can get on a trial.
In the UK and many other places availability of drugs/ treatments as well as NICE’s assessments will always limit options for MM sufferers. Equity in cancer treatments does not exist.
Go on fighting and asking questions until you are clear about what can realistically be done.
Life is a gift. Do not let the negatives spoil the good bits.
Hi Dawn
I do not know how USA works, but here although one might be under a consultant they ususally in teaching hopitals operate as part of a larger team and it is my experience that you do not always get to see the same person. Do you find you see the same doctor at follow up appointments or with treatment decisions? That is something that should interest us. Because often patients are discussed in a team with consultant present but the may then be seen by another team member.
I suppose it depends on the hospital and number of myeloma patients dealt with.
Dusk
Hi Annette
As I understand it is Revlimid (lenalidomide) that has been indicated to give rise to secondary cancers, not the Prednisolone itself.
Peter- You question is interesting. I have noted that people not ‘fit’ for SCT are often prescribed Melphalan / Prednisolone combinations, most are elderly people possibly. So normally prednisolone is given with Melphalan and I assume there is a reason for this. The only thing I know is I was told that as a steroid Prednisolone is better tolerated and in older people that may be a consideration. But I would explore this with your consultants as to why they choose this over a dex included cocktail of drugs.
Dusk
Hi,
Although off topic too I want to dispel some common misconceptions.
Drinking sufficient fluid is essential to the body for optimal metabolic functioning, as over 70% is water. Even low level dehydration will raise serum creatinine levels in those with poorer kidney health status, as is often the case for many myeloma sufferers.
In hot weather the fluid intake has to be much greater than in colder weather because increased loss of fluid from the body, (not just urinary loss). Creatinine will go up in hot weather otherwise, due to increasing dehydration as kidney tries to balance excretion, (many drugs and metabolites are excreted with water), with re-absorption of water. Often darker urine is obvious when this happens. Adequate fluid replenishment is essential.
But the scientific evidence that for moderate habitual tea/ coffee drinkers the diuretic affect is greater than if only water was consumed is not existing see:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3886980/
Doctors have assumed that other drinks other than water are a problem for keeping hydrated. As long as one drinks these in moderation they are all part of the total fluid intake that helps with hydration. Of course water is cheapest, easiest and readily used, but leaving others out is not necessarily better for your hydration it would seem.
I doubt alcohol is counted as fluid in this context because alcohol dehydrates. But I am sure drinking 2/3 cups of tea with the balance from water of your around 3 litres daily is not going to be a problem Check with a dietician with up to date knowledge of this field. and understanding of your disease results.
So sorry for the loss of your mother. I find it puzzling is how with myeloma background the hospital did not pick up the problem quicker with your mother. Did she have a haemato-oncology team at the hospital your father took her to?
This disease is unpredictable and sometimes things progress silently and rapidly as in your mother’s case. I hope you and your father have good support at this time.
Dusk
Hi Strummer07
The cost of stem cell transplant would be around £250,000 according to information on the internet from a young boy who had one and wanted to pay the sum back to the NHS in the future. So the information you were originally given was spot on.
Private medicine does allow you fast access and choice of consultant, who may or may not operate from an NHS hospital offering private facilities and treatment. It does allow you to choose the ones with the greatest expertise if you have a not usual condition. But it does not guarantee that it will be better than NHS and usually you would not be expected to be treated by ‘junior doctors in the field’ as you are paying. However nursing and other staff may not necessarily be better than in NHS either. In a private hospital, where staffing may in fact be less than optimal, I have heard of a case where this led to serious issue for patient as consultant was not told of patient changes fast enough).
However, if you have the money and are being denied life saving treatment on the NHS it is a difficult call with MM.
Dusk
Dear Sarah
What a sad yet beautiful post. I am sad for your loss and heartened by the care Mark received and the wrapper of love around you both.
Such good memories are to treasure when there is much in human life that is sad.
Best wishes
Dusk
