Good Andy to hear that the progress to recovery has been so positive. My memory of having pneumonia last year still remains so I know how tough it can be, even without being in ICU.
Do you know what might have triggered it for you? In my case lung infections are easily triggered by the drug regimes affecting cell counts and being in contact with the general public when out. Avoiding lung infections is tough if trying to lead a normal life, I’m always amazed at you going overseas for breaks. Still we have to enjoy life so balance risks.
Keep up the momentum.
Dusk.
Dear Laura and Jacquie I too am sorry for your loss.
Karen, The Myeloma Beacon US site may be worth looking as the US has a very higher numbers with myeloma and there is a lot more debate by patients on it regarding whether to have an SCT.
When one has co-morbidities (and I am one who has) the risks are higher. Your doctor has advised you of risks to you. I never really wanted SCT and when told I was not deemed eligible as the risks were much higher, (not as high as Rebecca’s posting earlier), I was not unhappy. I do not enjoy a life on continuous drugs, but I am alive although not in the shape I once was. Others on this forum also have not had an SCT because it was excluded or from choice.
There is a very strong view that all people who have SCT will have long remission. I have met a few at my clinic where this has not been so. The choice then becomes drugs, second SCT or a high risk Allo transplant.
I only bring these issues up because whatever decision is made there are no guaranteed outcomes either way. No treatment offers a cure and 10 year survival is for very few, some I have come across . An SCT may work brilliantly to extend life in some, but not for others. For some newer drugs too, with all their side affects, can give longer survival now than the treatments of earlier times.
There are many many variables in how well myeloma will respond to whatever treatment is given. I had some idea from research I undertook that the features of my myeloma cancer cells, aside from my co-morbidities, did not favour SCT for me. I live with the decision I took not to push for SCT. I am not fighting myeloma, but living in hope the doctors treating me can give me an average survival on drugs, in reasonable quality of life. If I live longer they will have done rather well.
Only you can decide, taking all the information available to you, on whether the benefits of an SCT would outweigh its risks for you. It is still considered the Gold Standard in the UK for younger patients like yourself.
My best wishes for the rest of your journey.
Dusk
There are private parts to the NHS system. The elite with resources, those who have medical insurance e.g. from the workplace or from their own funding who have myeloma will still have access to the drugs NHS patients will be denied.
From the drug companies perspective the UK alone does not have enough myeloma patients for them to generate huge profit from the NHS, hence high drug prices. Getting approval at European level for the drug enables it to be available across Europe if all governments are willing to fund it nationally.
The price of these drugs is very variable depending on country as an article in the newspaper highlighted a while back. I think there is a case for setting a price at the EU level with the drug companies so that the cost can be lowered. But now with arguments against staying in the EU emerging… The issue of proper funding for the NHS to meet population needs compounds things.
Patients may wish to avoid politics, we just want the best treatments to give us life. But how taxation revenue is spent is political unfortunately and ignoring this makes the politicians and those serving them take the actions that we now find untenable.
Jeffrey and Alex,
We and all patients denied treatments that are available have every right to be upset, angry, depressed according to their psychological makeup. I too have written to my Labour MP, a young inexperienced thing who took over from a well known high profile self promoting one. The latter wanted my vote but failed to do anything when help was sought, because it meant challenging a system of which the MP is a part.
I think a campaign to improve access to any treatment and care in the NHS is needed. If we campaign only for our corner it means others will also do the same so we compete for the same resources with another cancer or illness group. I for one am deeply distressed how taxation revenue is used by our politicians and how health inequalities have been increasing. If one has people in power who are not truly our servants I feel the wider interests of citizens gets ignored.
Although it is good we have M UK taking action behind the scenes I am not sure it will be enough in this difficult climate. Anything we as patients can find the energy to do ourselves is important too, so good Alex that you are doing what you can.
Hello Helen
When you are first diagnosed then the BMB serves a number of functions including taking a sample for cytogenetic testing as well as assessing the percentage of abnormal plasma cells in the bone marrow. It is a snapshot of the area where the sample was taken.
The myeloma is not always evenly distributed throughout the skeletal structure, an MRI/ PET scan can be used to show this picture better.
But after induction treatment before SCT they will want to know how much the abnormal plasma cells have reduced in the bone marrow. Light chain values from blood samples are good for regular monitoring during ongoing treatment to assess degree of disease control or determine if relapse is setting in, but do not give a picture of how much myeloma is still in the bone marrow- hence the BMB.
After SCT the BMB gives a picture of just how much of the cancer has been removed by this treatment. A stringent complete response will indicate negative disease status at bone marrow level, (although there is always some myeloma around it is at an undetectable level), as well as normal blood values for your light chains. There are guidelines written to inform our doctors just what degree of remission has occured from the information collected this way.
No need to be confused the BMB serves a purpose at particular times with blood levels of light chains measured for ongoing routine monitoring- no one wants regular BMB’s!
I agree with Jeffery that political slurs are unhelpful, reminds me of the debates in parliament!
I think M UK is correct in that the CDF is an anomaly. What is needed is a NHS policy at central level regarding funding for medical treatments which are ongoing and cost a lot of money.
One of the areas which really has been left unsatisfactory is the possibility of patients co-funding drug costs, for ones which are considered too expensive by the NHS, without opting out of NHS care to become private patients. Some families will try and find the money for part-funding a drug unavailable through the NHS, but could not afford full private care for treatment.
Secondly, the drug companies make huge profits so should not be milking the NHS. Some patients do well on the drugs others do not. It is patients who enter trials to help the drug companies to make their case for the drug. Doctors and patients take risks not knowing whether and for how long the drug will work, but using the researched information. So the price of a drug needs to reflect this and it does not it seems.
Finally, the issue as a patient that is of concern is whether the newer treatments for myeloma will actually ever be routinely possible on the NHS and how this affects the improvements in life expectancy seen in recent years. It is obvious that although newer, more flexible treatments have been available in the USA for those whose medical insurance is sufficient, the life expectancy statistics for patients there and over here are similar. This could be because although many people in the USA are covered through health insurance many others are not fully covered. So we see a life expectancy figure that is similar to the NHS where drug costs too have been an issue with NICE approvals. This suggests that without the wider range of treatment options in myeloma life expectancy figures may stall or reduce here. Not a comfortable position for a relatively rich and advanced country, whose cancer survival rates have not been the best. Maybe that is what needs to be plugged.
The UK is getting to be a small market for newer myeloma drugs e.g. compared to USA where myeloma patients are not only in higher numbers, but the insurance, for those who can afford it, gives their treating clinicians more opportunity to make a case for their patients individual treatment more readily.
The NHS is being told to make savings and it is rare diseases which are not in the public mind that loose funding. In England we have only recently introduced many of the newer treatments into the myeloma armoury to try to make it a ‘chronic disease’ .
The NHS may be a free service, but if drugs or treatment are deemed too expensive then they will increasingly come under scrutiny when budget cuts are sought. Human life has become dispensable by committee decision.
Moving to Scotland may not work as apparently health regions make decisions locally as to whether a drug will be funded, rather as clinical commissioning groups do in England.
Writing to MP’s etc. may help, but politicians have their own pet projects so I am unsure how much can be changed if Celgene and other companies do not change their pricing to the NHS. The picture is depressing.
Andy, sorry to hear you have what we with MM fear. I had it last year and I had a long hospital stay, thank to medical ‘failures’.
Did you have the pneumonia vaccine?
At my treating hospital we are told to report / go to A&E if temperature rises above 38. So it seems one needs to monitor at frequent intervals if suddenly feeling unwell / feverish. Now the colder weather is approaching we are more at risk of chest infections. Knowing ones normal body temperature range is useful. So we do need to take responsibility to ensure we get timely treatment.
Every good wish for your speedy recovery.
Dusk
Dear Charlie, I do not know what you have decided regarding SCT. But the research suggests younger people like you who have suitable induction followed by SCT survive longer. Very few choose not to have an SCT unless their health status suggests a higher risk than normal.
In general, it is known that remissions are longer after an SCT, but not always for everyone. Secondly they offer a period of remission free of drugs, which most would welcome. However, nowadays many specialists use drug maintenance regimes after SCT, at least for those who do not reach complete responses after it.
Myeloma is a complex disease and our clinicians cannot predict outcomes as a result because we have not got the tests for individually based treatments yet. An SCT on average appears to give 18 months or so of remission, but some people get much less and others much much more. A number of younger / fitter people when they relapse can have a second SCT or may be offered allo transplants. so this prolongs survival too.
Not easy decisions. Having an SCT would put you within the category of the majority who do this when offered SCT. Talk to your treating consultant and transplant doctor to voice your concerns. They know your health and medical situation. Then when you make a decision, do not look back. Good luck.
Dusk
Hello Andy
22 cycles of RCD!!! Your bone marrow would have got quite a battering. Interesting they kept the cyclophosphamide in a triplet combination for so long a period, but as they say each of us is individual and the treatments given will be based on our doctor’s experiences of treating our disease. No wonder POM is easy for you after all that.
As to avoiding chicken pox, a highly contagious airborne disease. Realistically you can only avoid friends / family / visitors who can be ‘warned’ to inform you if they or their child has had recently or currently has a contagious illness/ infection. In the real world e.g. waiting in hospitals, GP surgeries, airports etc. you have no idea what people are carrying. Small children and babies once a source of delight can become something to fear?
You are right in that you cannot stop living the life remaining to avoid these things and statistically their are many other accidents that are greater risks to shorten life.
Also re: you other post, yes MM is now seen as a clonal disease with distinct clones that react as separate entities to the treatments given, that is why relapse occurs, a dominant clone can be wiped out on one treatment to let a very minor clone not affected by the treatment grow and take over in time leading to relapse. If scientists ever find a way to reverse the behaviour of cancer cells in our body, so cancerous cells loose their cancerous ability to grow uncontrollably, then a cure may arise one day.
I differentiate being better from feeling better. How I feel and what I need to do now as a necessity is how I try to deal with life now. We all have our own priorities with an unpredictable situation.
Great that you get away regularly between cycles of treatment and your indominitable spirit is evident. Judging by your running pics bone disease is not a major issue so travel will be more fun.
As you say every day is a gift- whether you have MM or not.
Wishing you and the family have good support at this sad time.
Dusk
Hello Rebecca
A good post, showing depth of understanding of life choices so we live life and not look back or forwards with regret. we make a decision to have a treatment and then need to accept the outcome without regret.
The issue, as someone who was from the start accepting of the diagnosis, but wanting detailed involvement in decisions about treatment so I could carry on for a while longer my necessary role which I fully knew would have to change, as it did. It is not necessarily how I would have wished things to turn out, but life is that and I have few regrets. Where I am today I know well I would not have managed to continue with the responsibilities I held- a realistic assessment.
Like you I think work and earning money for a continuing a ‘lifestyle’ not necessities is all too common, and without family / spouse support, or resources, to make giving up work a real decision people rush back to avoid reality.
Also I note many seek the holy grail of CR /sCR, which not only few achieve, but by the very nature of this disease is that it never completely goes away and comes back, so this too is a form of denial. We have a choice, living each day as well as you can doing, within your new limitation, what you need or enjoy takes away anxiety about the future. But one has also to accept death as a part of life, at any age, and that in our society is still something not much discussed. Actually my thinking around these matters is rather complex due to the philosophies I have studied. I am the master of my mind not its servant!!!
Dusk
Fiona: I noted from your other positing the decisions about ‘life’ your husband has made with your permission. Although MM might force a role reversal, being a house husband with more time to enjoy the moment I think is great.
My life / body has been changing since MM and as a result I am now on second line treatment. Neutrophils have got very low a few times. But I have also had infections (even hospitalising ones), which would not help. GCSF injections seem to be used by some as you mention. But when these are deemed necessary could vary for each patient and clinicians make the decision based on ones overall situation I suspect. Hand Gells!!! What about soap and water? Just coughing / sneezing releases germs which we can pick up from visitors, who may not have an obvious infection, but may be carrying one. Also I noted infections from the food / stomach route when neutropenic are more likely, so certain foods are to be avoided at this time.
Frances- your consultant’s approach seems to be ‘treatment holiday’ to allow your counts to recover. When neutrophils go very low risks of infection increase, especially if your existing immunity is also low in order to help fight them. Whether you need to take precautions or not depends on your individual situation.
You should ask your consultant that if you do not have signs of an infection why he/she chooses to give you a treatment holiday, rather than GSCF to at least temporarily, (which is how GCSF works), boost the neutrophil count to allow treatment to continue.
It seems different approaches to dealing with low neutrophils on treatment are being taken, a bit like the approaches to the initial treatments to MM it seems, because there is no way outcomes from one approach versus another can be predicted.
This journey is indeed a marathon!
Dusk
Hi Folks
Just to give you a perspective, things like dried fruits have a lot of concentrated sugar, more than fresh fruits. Any high starch /carbohydrate containing foods (e.g. bread / rice), not just the sweet things we consider with added sugar, are reduced down into sugars in the body. Only if you eat a high protein / fat diet with say steamed vegetables low in starch (not carrots / potatoes) would your carbohydrate intake be low to to count as low sugar.
So sugar in out diet comes from many sources. Just read label packets to see this.
People whose sugar intake is controlled not only do not eat the ‘sweet’ things, but are more likely to not add sugar to anything where possible. Refined or unrefined is the same!
Eat a well balanced diet- ask to see a dietician if you need advice. Happy eating.
Dusk
Rebecca,
Interesting post.
The personal perspective of each one of us will be based on our mental and emotional ability to cope with change. Corporations etc. find change difficult because the ability to take a whole group of ‘diverse and agenda seeking’ others’ to ‘another place’ to function better is very hard unless leadership is very very strong and charismatic.
From my own ‘religious/ philosophical’ perspective I have long seen that the whole of life is actually one of ongoing change throughout life, but we do not notice necessarily these because of the continuity of our lives.. until that continuity is undermined.
Living as fully as possible in the present, (not the past or future which becomes the present at each movement of time), and appreciating what is good and joyful in our lives and making the best of our ‘changing circumstances’ is key to making the best of our life. Not always easy I realise when you feel unwell.
Some may benefit from professional help, others will get support from those they open up to and trust. We will all find what works for us ourselves. Fear of ‘what will be’ is the enemy to overcome in my view to living well in the present.
Dusk
