Hi Peter,
Glad you have broken your silence and bloods are OK. Annoying about the cough though. I came out with a cold last week but managed to throw it off. Do take it one step at a time, being careful not to get overtired. I still get lots of aches and apparently this is quite normal for the first 6 months.
I will be interested to know what they say about remission. My PP's were below 2 after CDT and were still below 2 after high dose chemo. I was disappointed by this but had not thought to ask before the procedure what to expect in terms of PP levels.
Myeloma nurse said that it was impossible to draw conclusions from these results but that levels could continue to decrease for up to 18 months. On the less positive side she had experience of patients with undetectable disease after STC who relapsed shortly afterwards. I wonder whether anybody else on this forum has been told something different about prospects for remission.
Hope your cough clears up soon.
Chris
Hi Jean,
Please don't worry about some sharp cutoff at 70. I got the distinct impression from The Christie clinic that the decision about whether to go ahead or not is taken very seriously indeed with the best interests of the patient at heart. Existing level of fitness plays a very significant role in these deliberations I was told. Mind you they do everything to put you off during the consent interview, which in my case lasted about 30 minutes.
Chris
Hi Jean,
What a miserable time you are having and of course you suffer just as much as Frank and again it is so difficult to complain when you are in the midst of it for fear of even worse treatment being given.
Just hang in there and reassure Frank that it will be worth it in the end.
It is now 11 weeks since my transplant and apart from having more aches than usual for a fit 69 yr old and some loss of stamina I feel OK. Thank you for asking and good luck with the next appointment.
Chris
Hi Megan,
I would be very interested to know how the kyphoplasty saga proceeds. I have two collapsed vertebrae that give me back pain and after some difficulty got referred to a specialist in that area (Manchester Royal Infirmary). The registrar I saw said that the outcomes of the procedure were often unsatisfactory. Furthermore he did not seem to think that I was in enough pain. All in all I got the distinct impression that they did not deal with many MM patients and that osteoporosis was more their speciality. However about 2 months after that first consultation they are going to give me an MRI scan of the affected vertebrae.
Chris
Hi Jean,
Have you thought of asking whether there is a specialist nurse who actually does all the paperwork for booking you in? I was treated at The Christie (specialist cancer hospital in Manchester) and directly I was referred there by the haematologist from my normal hospital for CDT I was introduced to the nurse who coordinated everything from harvest to Hickman line to the bed being ready. I hardly ever saw the consultant but I know that the nurse was in frequent contact with him. The point is that the nurse was always available either by email or phone for keeping me up to the minute on bed availability etc etc. whereas the consultant or registrar is harder to get hold of and they don't actually do the admin.
Likewise after the transplant I have now got all the contact details of a specialist Myeloma nurse who I have phoned several times in the first weeks after transplant for advice and reassurance.
I do hope it gets sorted soon. I know the waiting is horrible. I had difficulty with the harvest so it took a month longer than normal and all the time I was imagining my PP going up.
Chris
Hi Peter,
If you are anything like me dry mouth will continue for some time. I went off coffee completely too and only liked certain types of tea. Yes, we had high security at home. May seem OTT but anything better than an infection. I will be in the clinic for a check up tomorrow morning.
Good luck with the home coming. Next door neighbour is a nurse and she said there is nothing like being sick in your own bathroom.
Chris
Hi Peter,
Good to hear from you. I was getting a bit worried by the silence. I was not so clever at getting to the toilet on time. Sounds like you will be in the Christie for the same time as I was. I went in on Tuesday and came out on Friday 2 weeks later. It is now 10 weeks since the transplant and apart from some back ache and dry skin and itchy eyes I feel just about normal. Had to go into the clinic 2 wks after discharge, then 2 weeks and then 4 wks (the day after tomorrow). No isolation provided at the Christie for out patient visits though! When I am in the clinic this Friday I want to find out just how careful about infection I need to be. There is lots of flu out there and thanks to my namesake, Dr Wakefield, mumps, measles and rubella is rife amongst young children. My wife has been fiercely protective of me so far for which I am very grateful.
Hope you get out on Friday. You will certainly be having to keep your feet up for the first few weeks.
Good luck,
Chris
Hi Peter,
Have seen your latest post on my email although it has not appeared on the discussion board yet.
So the nurses remember me do they? Please give my best wishes. They were all super even after I had covered every surface of the bathroom with s**t.
I am sorry you reacted badly to the melphalan. Just keep focussed on the knowledge that in about 10 days it will all get better so keep your spirits up. I found it mentally almost as hard as the physical discomfort of managing drip stand, 24 hour pump and frequent visits to the loo while ensuring that everything excreted could be measured for the fluid balance.
It is now 8 weeks since I had the transplant and my digestion is returning to normal finally. Had one temperature excursion on Christmas Day of all days so spent 12 hours in the Christie Medical Assessment Unit. Otherwise apart from occasional nausea, some back pain and tiredness things have not been too bad since discharge.
I thought communication about the treatment was brilliant in the HTU. The only thing they didn't tell me when I went home was that my diurnal temperature cycle would be sent haywire by the chemo.
Good luck with the rest of it,
Chris
Well done both of you and welcome home. Lots of good advice given too by those who have trod the path before.
Chris
HI,
That is good news indeed. Excuse my ignorance but what is Thal? I have googled it but with no result.
Chris
Hi Sarah-Jane,
Have you got a copy of the MyelomaUK booklet about MM? There is an appendix at the back that gives the normal ranges for all the tests that are routinely done and it explains something about their significance.
Chris
Phil should count himself lucky that he only has an IV stand to cope with (only joking). I had to carry one of those 24 hour pump things for sickness out to the loo with me every time – and as others have remarked that was not infrequent. Managing pump, drip and bed pan all in the confines of the bathroom was no easy task!
Sounds like you will be home soon Phil but don't get over enthusiastic about walking. Just listen to your body and stop when you feel tired. I sometimes got tempted to do too much and regretted it afterwards (lovely wife muttering 'I told you so' in the background).
Chris
Hi Maureen,
I would also add that travel time to the hospital is an important consideration too. I don't know what your husband's treatment plan is but if it involves a stem cell transplant you will be making endless visits when you are both very tired.
Chris
Hi Megan,
From what I understood the 'bottom' is when the white blood cell count is zero! You then know that the melphalan has done its worst and the only way is up.
I think it is also sensible to be prepared for set backs. When I came out of The Christie a few weeks back and feeling quite well I pushed the doctor's words about being prepared to the back of my mind thinking that I would be different. Nemesis set in and my wife ended up driving me back to hospital at 2.30 am on Christmas Day with a fever, nausea and diarrhoea. Fortunately they only kept me in for 12 hours and sent me home with two more antibiotics and Tamiflu. The haematologist said that it was highly likely that I would continue to get viral infections for the next few months, The Christie, being a specialist cancer hospital has a fantastic medical assessment unit where they assess their patients who experience problems and decide within 36 hours maximum whether to admit them or not.
What I am trying to say is be glad about all the positive news but don't get over anxious when there are setbacks – a lot of people have them apparently.
Good luck to Phil with the continuance of his journey,
Chris
Hi Alastair,
I have no information on which to recommend one clinic above another. I do know for certain however that you will be making many, many, many hospital visits so please do not underestimate the travelling. Both patient and carer are bound to be tired and emotional at times into the bargain and that will contribute to making travel even harder.
I also agree with the person who said that treatment (first stage at least) is pretty well standardised across the NHS.
For what it is worth I have been under Dr Watt for haematology at the University Hospital of South Manchester and for SCT under Dr Cavet at The Christie (specialist cancer hospital in Manchester). I have nothing but praise for both centres.
Good luck,
Chris
