Dear Rebecca
I’m a serial worrier – about everything – and your comments are really positive – thank you!
Dear Mavis
Thank you for your reply to my post and for your good wishes, it means a lot to share that thank you. Nicki
UCLH seems such a good hospital with a very good record for SCTs, so I hope all is going well for you. Kevin was admitted to the ward there in November last year whilst he was ill with pneumonia as at that time it was thought he had Waldenstroms Macroglobulinaemia and the national expert in that, Dr D’Sa, practices from there. It is a lovely place, with wonderful views across the London skyline on the high up Haematology floor, which I’m sure you will spend a lot of time gazing at over the next few days.
As I said to Kevin,whilst he was recovering from his SCT, each day that passes is a step nearer to getting back to better health and I wish you well, all too soon the time spent there will be the past with the bright future upon you. Nicki
Thanks you so much for your good wishes, it really does mean a lot, thank you. Nicki
Thank you for your good wishes – they do mean a lot even though of course we don’t know each other at all really!
As I have just posted in another reply, at 66, diabetic and not especially fit and with only one kidney, Kevin was perhaps not an ideal candidate for SCT but all tests showed he could get through it, and indeed he has and life is virtually back to normal. I often read the Myleoma Beacon website – there are a lot of good resources on there, especially re SCTs and at the minute someone is posting video news about his experience on a day by day basis which is new.
I also read one of their useful polls about whether or not post SCT patients think they made the right decision to have SCT and 87% did which is very good.
I hope all goes well for your husband – I’m sure me and others will be able to listen to any concerns you have and give you advice from our own experiences if you would like it.
Regards
Nicki
Thank you for your good wishes Rebecca. I hope Kevin’s progress is hope for others who, like him, were not particularly young or fit at the time of SCT but who have got through the process well with virtually no side effects after just a month.
We are lucky in that we both work largely at home ( we changed our lives this way after Kevin had kidney cancer nearly 7 years ago)so he is really as normal in terms of working hours which is pretty much full time.
Currently the only evidence of what he has been through is the lack of hair ( although it seems to be growing a bit already) and the daily Zovirax, prophylactic for shingles.
Appetite is nearly back to normal although Kevin still doesn’t like sweet things too much, he says they taste too sweet,but that is good news for an overweight diabetic!
He is much more sanguine and forward thinking than me I think however – I know he won’t spend time worrying unnecessarily about recurrence but I know that I will to some extent. Perhaps though the one plus with this disease is because there are periods of remission and periods of active disease you really do focus on the good things in life when you are well. This has been the case since Kevin first had kidney cancer, you tend to get away from the things in life that are unimportant or stressful as much as you can and focus on the things that really matter – that must be a good thing!
It’s interesting how different hospitals have slightly different protocols but if your husband is being treated at the JR in Oxford I’m sure he is in very safe hands as it has an excellent centre. We have been thinking of moving at some point nearer to relatives and the Oxford area would be first choice as it is near family and friends and because of the JR – any potential new home will have to be near a vg myeloma centre as we are aware that throughout Kevin’s life he will need that at varying points.
You sound very much like me in your need to find out as much as you can – Kevin’s IgM myeloma is quite rare, as is non-secretory, and there are very few dedicated studies other than a couple which I decided to ignore as they were out of date and weren’t based on enough patients to be really valid in my view. At least it seems as if the main treatments for MM are effective for all forms of the disease even though all those with it seem to present with different symptoms, reactions to treatment and side effects. Like you, I told my husband as much as he needed to know in bite size pieces and made sure I timed them appropriately to diminish his anxiety – so, for instance, never before bedtime, never at weekends, or not when he was anxious about work but perhaps when we were at the hospital or when he could soon switch off onto something else. I think he was in denial for some months and it took many months before he wanted to engage with the consultant and really have the confidence to talk about it. My way of thinking is that if I know everything, including the worst possible scenarios and outcomes, then I can come to terms with that first and the cope with anything!
Kevin’s treatment was a little different from Carol’s and I think the protocol at the JR – there was no added chemo to help mobilise the stem cells but perhaps that was because he took cyclophosphamide in the initial induction therapy with dexamethasone and thalidomide. He had no real issues with the injections of the GCSF before the harvest -I had strong painkillers at the ready – just a slight throbbing in the sternum and the pelvis on a couple of nights, but not strong enough to merit paracetomol, at least you then know its working to stimulate stem cell growth and mobilisation. Interestingly when he had the same injections post SCT to stimulate the growth of new calls at neutropenia it was a bit more painful but he only had 6 paracetamol in total I think.
The actual harvest was straightforward and painfree – amazing to watch the cell separator at work – rather like a dialysis machine, and Kevin had two consecutive days of harvest taking about 2 and a half hours each. The worst thing is just having to sit pretty still for that time with cannulas in each arm but it is pretty incredible when you see the bags of cells, even more incredible when you get them back! The preservative in the machine can cause low calcium levels whilst you are hooked up – this is shown by having cramping or tingling in the fingers – Kevin had this slightly on both days but was given calcium tablets to chew which were effective.
Kevin didn’t have the amazing number of stem cells at harvest that Carol did, but still enough and I think they harvested 4 bags of cells the first day and 3 bags the second day. The highly trained nurses were in constant attendance during the procedure and it was quite emotional ( in a good way) when a month later the nurse came to give them back, incredible technology!
I suppose one of the humorous things is the search for good veins for the cannula sites – how nurses must love patients with good veins – some of Kevin’s had collapsed with over use over the last year I think and it was quite amusing to watch the nurses push and prod until they seemed to strike gold and find a good one! Hospitals do things differently but I know found putting cannulas in the arm where possible is much more comfortable than in the back of the hand which was the failsafe option as they were less uncomfortable and didn’t restrict movement so much.
It is an incredible process and one that cancer centres so routinely now – one interesting point – the dates for the harvest have to be pretty rigid as the GCSF /Neupogen only works for a very limited time and even if left a day late the numbers of cells collected will decrease rapidly. Kevin’s injection dates fell over a bank holiday weekend at the beginning of May which meant district nurses visiting on three weekend days – that was fun – they hadn’t heard of it before and it took some time for them to be comfortable with mixing the drugs up and administering them but they were intrigued by the process too.
I hope this puts your mind at rest – it is a very safe process, just tedious I think and lots of injections to put up with.
Regards
Nicki
Ouch! I can imagine Carol how it felt but when you got the results I imagine you felt it was worth it. You do wonder how much individual technique affects discomfort and duration of the biopsy. Kevin’s initial one ( to confirm diagnosis) took about 45 minutes in all I think and he said afterwards ‘never again!’ The second one he had in a different hospital only took 15 minutes but I had asked that he had a sedative beforehand – not sure if that made it quicker or not but it certainly made a huge difference to Kevin who didn’t even realise it was being done.
Kevin was pleased to find out that our hospital doesn’t routinely do a 100 day post SCT biopsy, apparently that is only done if treatment is through a clinical trial.
You must be excited with your timing, not a bad summer so far here and soon after you get to Australia you can look forward to summer there!
Nicki
Hi
As we live so far (50 miles) from the cancer centre where Kevin has his treatment we were advised that Kevin may have to stay in for a few days longer post SCT because of the risks of being so far away, so we were expecting a three week stay in the area although Kevin was determined to get home as soon as possible!
From my understanding a hospital will not discharge you until most importantly, the neutrophil count is at least 1, any diarrhoea and vomiting is not intense and is manageable, and thirdly, temperature is stable. Earliest to go home is 10 – 11 days, typical is 14 – 16 days, depending on the above criteria. Any need for supportive IV infusions eg for platelets or red blood cells if these go v low are another indicator – Kevin didn’t need any although you can get these as a day patient in some centres I believe.
As Kevin had some d and v but not much, his temperature spikes calmed down and his neutrophil level shot up, he could actually have come home on Day 12 but we were concerned that if we came straight home and there was a problem ( a sudden temp rise) then things could have escalated quickly. that would typically be a temp spike of above 37.5( febrile neutropenia) which could have quickly led to neutropenic sepsis ( temp above 38.5), this is the danger.
Kevin had urosepsis 3 years ago before he was diagnosed and we were amazed how quickly it came on – I was away on business and he called to tell me he thought he had flu coming on and 3 hours later when he told me he couldnt stop shaking and shivering and had pain in his kidney I thought it sounded nasty and got him blue lighted to hospital where he had 7 days of IV antibiotics. So this risk of infection and sudden onset sepsis when neutrophils are v low is the real danger therefore the frequent obs of temp/pulse/SATS/ blood pressure post SCT to look out for this. At the onset of any sepsis temp will rise, blood pressure and SATS can fall
I think having plentiful fluids during the process makes a big difference – not only to flush the chemo through and to keep hydrated but to ensure the kidneys are kept working as well so nothing stagnates. He had a couple of days ( when neutrophils were lowest) when his temp spiked to 37.9 a couple of times and was put on IV antibiotics just in case which is often the protocol and I’m pleased they did. He always made sure he had at least 1.5 litres of water a day although he normally has double this and if someone can’t drink enough due to nausea or vomiting there will be intravenous hydration.After the chemo until discharge actually his pulse was quite high but this is another side effect that they watched.
Now on day 18, his digestive tract is almost back to normal although he has waves of nausea and then takes metaclopromide which really helps although he still wants very bland food. The fatigue is the big thing now – everyone I think gets this – just getting up and showering is exhausting which will hopefully diminish over the next 2 to 3 weeks, and he has started to lose hair at quite an alarming rate. We’re watching this to see if he will need to have his head shaved but as he lost about 50% of it during the last cycle or two of CDT, he might not lose it all.
It is a short time from when your husband was diagnosed until treatment so there is so much for you to take in, no wonder you must be shocked and desperately needing information. It is my view that the more knowledge and information you have, the more confident you will be to offer your husband practical support and to be proactive in his care whilst he is in hospital – if I can do anything else to help I am more than happy to.
We both feel that the whole process so far has not been as bad as we expected and we are forever humbled by the high quality of care Kevin has received. We know, from 2007 when Kevin had a 20% chance of 5 year survival after his kidney cancer diagnosis, that statistics are out of date. There is a huge increasing arsenal of drug treatment options for myeloma now and even though the hardest part for MM patients and their families is the fact that it is still not curable, but treatable, we feel unanimously there are are far worse diseases that you could get.
I wish you both well
Nicki
Hi Carol
I’m pleased to know all is going well for you too! I hope the blood results are looking good and you must be getting v excited with your forthcoming move to Australia. One of the pluses I guess that comes from having ‘cancers’ is that you can appreciate the good things in life more and become rather good at being hedonistic and then tend not to dwell on the not so important. I’m sure with the ups and downs of myeloma it makes even more sense to focus on doing the things you really want to when you are well and as such Kevin is looking to buy a little sports car to use in the summer to visit places in the UK that we don’t normally think about for weekends until we feel confident about going abroad again next year.
I’m sure with the forthcoming trip you must be focusing less on the myeloma as well which must be good. We got in the habit when Kevin was having monthly, then quarterly and then annual scans post kidney cancer not to try to think about it all until the day before the scan, even though the days waiting for the results were always anxious, and its ironic but in quite a few ways our lives were better since then – not so carefree admittedly but we enjoyed it more.
You say you are in stringent remission which is fantastic news – I thought the criteria for this included a bone marrow biopsy, did you have one……willingly?!
Best wishes
Nicki
I am sure you will find support on this site from both those with myeloma and also from their families who taking on the role of being carers unwittingly. Of course you are now in shock – it is a disease few are aware of and the ‘cancer’ label is frightening. The more you get to understand about it ( and hopefully you will find what you need, when you are ready for it, from this site and from your mother’s consultants) the more you will see it as a complex disease that cannot yet be cured but that has highly effective treatments.
As someone who was faced with my husband being diagnosed with a high grade renal cancer just before Christmas 2007 when he was faced with a 23% chance of being alive in 5 years, I’ve been through all the emotions possible. I’ve kept strong through my fabulous support network of friends and work colleagues and ( this is my way of dealing with things) of becoming very well informed and being as proactive as I can be with my husband’s care. That was 7 years ago, he was hit with a diagnosis of asymptomatic myeloma 18 months ago just as we should have been celebrating his 5 year survival of the first cancer and he’s now gone through treatment which has been tough at times but not terrible.
We both owe his continuing life and health to the most incredible care available through the NHS – the support that is available for your mother in 2014 is better than it ever has been for this disease, but you must find your way of seeking support as the shock wears off. I hope all goes well for you and your mother.
Dear Simon
I think we all inevitably have some anxiety about the unknown but I think you will find a lot of posts on this site about people’s different experiences of SCT. The more informed you are, particularly about preparing practically, hopefully that will allay your concerns to some extent. Hopefully you also have a specialist nurse or transplant coordinator who can answer any queries or worries you have.
I certainly worried more about Kevin when he had pneumonia in the winter and was very ill than over the transplant now- the transplant teams are so used to dealing with all the side effects and watch for the slightest signs that you need help and have effective drugs at their disposal if you do need support.
For us there has been a couple of real positives- firstly when the stem cells were transplanted when there was a sense that ok treatment is over, now the recovery starts, to when the neutrophil count started rising slightly two days ago, this was a very exciting moment.
I would guess that Kevin found the constraints of having a broken leg 2 years ago more frustrating than this, he probably found induction therapy harder at times than the effects of the melphalan in SCT and knowing what to expect has been important yo us both. Kevin is 66 and only has one kidney so there were some initial concerns about his suitability for the process but I would say the worry about the process hasn’t been borne out by the experience so far.
I’m sure all those who have experienced SCT will be happy to provide you with whatever specific concerns you have Simon and meanwhile my dear husband looks forward to coming home and to being able to enjoy the football and Wimbledon as he gets his strength back!
with best wishes
Nicki
Thank you Carol and apologies I haven’t had an opportunity to reply until now. I think everything you said has been very valid and helpful and so far Kevin’s experience has been similar to yours I think except his mouth has been fine except for a little thrush.
Re your analogy with childbirth I think Kevin now has a lot of empathy for expectant mums experiencing morning sickness!
thanks again
nicki
Hi
I wonder if you have accessed the US based Myeloma Beacon website, I like the depth of information on trials and research, the weekly polls conducted through the forum and the general layout which I think is easy to navigate. However as it is US based, standard treatment regimes are not the same as in the UK and different terminology and units of measurement are referred to.
regards
Nicki
That is brilliant news, cause to celebrate!
Nicki
