https://forum.myeloma.org.uk/members/FOXLEY/activity/ Activity feed for ChristopherWakefield. Tue, 21 Apr 2026 07:33:26 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 5a326aacc68f01d498abf40e6488cfaf http://www.myeloma.org.uk/forums/topic/what-constitutes-a-successful-sct#post-95271 Mon, 27 May 2013 17:59:01 +0100 Thank you Helen and everybody else who has replied to my original post. They all make very interesting reading and give ample food for thought.
Since my original post a friend has shown me a Macmillan booklet about travel insurance. It lists a fair number of firms who specialise in the cancer area.
Thanks again,
Chris

]]> 97d9c70b38814dd026195688fc47690c http://www.myeloma.org.uk/forums/topic/9-months-since-sct-/page/2/#post-102607 Fri, 24 May 2013 22:34:28 +0100 Hi Peter,
It sounds like you had more complications to deal with than I did. I do think it important to do as much exercise as possible. If nothing else it strengthens the bones.
I had not thought about joining a support group. Have you joined one and do you find it helpful? Don't really understand the different approaches to use of Zometa. The…[Read more]

]]> 8accecce494ce11eea04550d91302716 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102602 Fri, 24 May 2013 10:53:23 +0100 Hi Alex,
I have had no luck getting physic on the NHS and have now resorted to Pilates, beginning last week. It would be great to have details of the exercises you have been given. I am glad that they seem to be helping you walk better.
Being used to intense physical activity, I found the sudden loss of it one of the really hard things to bear…[Read more]

]]> 507c80f97cc99699b724aaaeaf6ed8f2 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102605 Mon, 20 May 2013 13:33:11 +0100 Hi Peter,
I am feeling very well thank you. Tingly toes can be annoying and I find that I get indigestion if I stop taking Omeprazole. Pain refelected down into my ribs from my crushed vertebrae can be an issue but the MRI scan revealed that my back muscles were out of alignment and I am finding that walking while consciously keeping tall is a…[Read more]

]]> bdedfddb5c688dd022b96503ae4aa769 http://www.myeloma.org.uk/forums/topic/what-constitutes-a-successful-sct Mon, 20 May 2013 10:11:25 +0100 I had my SCT in Nov last year and am now looking for travel insurance. One of the questions on the form was 'Was you SCT successful?' My consultant said 'partially'. My PP went from below 2 before the transplant to 2.3 after and has now drifted up to 3.2 at the 6 month stage. I wonder what other people's experience of PP levels after transplant…[Read more]

]]> 15549740fac61afa73dae4c7be4d01db http://www.myeloma.org.uk/forums/topic/new#post-87514 Sun, 19 May 2013 16:19:55 +0100 Hi Ann,
There is just so much to take in when you are first diagnosed. As many others have said there are so many pills and injections that a written checklist of some sort is essential. I think Myeloma UK have something in that line.
I would not be able to comment about missing out on the cyclophosphamide at the beginning. I am sure there will…[Read more]

]]> 390376b105772cd06a577e468eeeadd5 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102599 Sun, 19 May 2013 16:03:33 +0100 Hi Peter,
Sorry to hear that exercising those bones that have been attacked by the wretched myeloma is proving problematic. Reduction in exercise seems to be a common problem with MM patients. I suppose I should count myself lucky that I can do as much as I do.
Also interesting the difference in approaches between consultants. I started Zometa…[Read more]

]]> 66efc1c51925d7062cf99b8d8ad23828 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102597 Sat, 18 May 2013 15:01:46 +0100 Hi Peter,
I am feeling very well thank you. Tingly toes can be annoying and I find that I get indigestion if I stop taking Omeprazole. Pain refelected down into my ribs from my crushed vertebrae can be an issue but the MRI scan revealed that my back muscles were out of alignment and I am finding that walking while consciously keeping tall is a…[Read more]

]]> b0997ea935f9ae1b0595edddbf6353bf http://www.myeloma.org.uk/forums/topic/new#post-87512 Fri, 17 May 2013 22:34:08 +0100 Hi Ann,
It took a year of asking to get the MRI. Haematologist would not refer me until I had had the CTD as he said that the pain would probably get better and it did, but not completely. As it did not go away completely he referred me to the Manchester Royal Infirmary but then the transplant intervened. Then I got to the Infirmary consultant…[Read more]

]]> f59d99603698fcae2962112fdff2bb73 http://www.myeloma.org.uk/forums/topic/second-attempt-at-stem-cell-harvest#post-102473 Fri, 17 May 2013 18:30:22 +0100 Hi Sarah,
I also had difficulty with the harvest and found it rather depressing as I thought it important to have the high dose chemo as soon as possible. They got there in the end though, after having the highly expensive booster injection (can't remember its name). Consultant said it was important to have a gap between the harvests in order to…[Read more]

]]> c3d90f83a0d4e1106e36e9fee1459138 http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102595 Fri, 17 May 2013 18:17:30 +0100 Hi Peter,
I am in the same sort of position. My PP before transplant was less than 2. Since the transplant it has been about 2.3/2.4. Consultant said that in only about 15% of cases does the level go to zero. I have since done a bit of asking round friends and I know of one man who has had PP levels varying between 5 and 12 for several years.…[Read more]

]]> ba129fa50f8314b396c744df2ee4e7ed http://www.myeloma.org.uk/forums/topic/9-months-since-sct-#post-102594 Fri, 17 May 2013 18:17:12 +0100 Hi Peter,
I am in the same sort of position. My PP before transplant was less than 2. Since the transplant it has been about 2.3/2.4. Consultant said that in only about 15% of cases does the level go to zero. I have since done a bit of asking round friends and I know of one man who has had PP levels varying between 5 and 12 for several years.…[Read more]

]]> 415ada1fb979f97fdb74bf703b03d2e1 http://www.myeloma.org.uk/forums/topic/complaint-to-nhs-re-late-diagnosis/page/3/#post-95242 Fri, 17 May 2013 18:10:06 +0100 Hi,
Have not been on the site for a while but wow! the number of sufferers with similar stories of slow diagnosis. I had excruciating back pain but GP said take pain killers and don't molly coddle it. This seems to be the standard advice that GP's are given. My next door neighbour, an orthopaedic surgeon, diagnosed me because: a) orthopods are…[Read more]

]]> aab96b6134855613cbb003e5153b556b http://www.myeloma.org.uk/forums/topic/ctd-and-depression#post-95257 Fri, 17 May 2013 17:59:11 +0100 Hi Georgie,
If my experience is anything to go by the cycles of CTD will gradually reduce the pain. I too found the combination of pain and sudden loss of mobility was in a way more depressing than the fact of having an incurable cancer so I fully empathise with your father. Do assure him that for most patients the pain does get less. I was about…[Read more]

]]> f3dba9ae9cc05602bc19badbde1eaffd http://www.myeloma.org.uk/forums/topic/new#post-87510 Fri, 17 May 2013 17:46:20 +0100 Hi Ann,
I had an MRI scan a year after my vertebrae were crushed. The consultant radiologist said afterwards that surgical interventions are only useful during the first 10 weeks after fracture and that creates difficulties with MM patients because that is usually just the time during which chemotherapy is being initiated and no surgeon is keen…[Read more]

]]> 2bd8353a44f49ed1d0fc4557b1dffe29 http://www.myeloma.org.uk/forums/topic/sct-not-worked-help#post-102546 Fri, 17 May 2013 17:31:48 +0100 Hi Christine,
I am so sorry to hear about your troubles. I had an SCT at The Christie under Dr Cavet last November. As far as I know Dr Cavet is one of the top consultants for MM so I imagine that he will point you in the best possible direction. I found communication about what to expect from melphalan less than perfect. My PP went up slightly…[Read more]

]]> cf306ae4317dbe83787d867440b1649c http://www.myeloma.org.uk/forums/topic/64-favourite#post-94722 Sat, 30 Mar 2013 20:18:16 +0000 Hi Dal
Been there, done that! Glad I was not the only one.
Chris

]]> 50de73daec6d3a993552945f83c279db http://www.myeloma.org.uk/forums/topic/itchy-rash-post-sct#post-105079 Mon, 25 Mar 2013 22:19:02 +0000 Hi,
It is now 4 months since I had my SCT and I am suffering more and more from itchy skin but without a rash. It is fatal to start scratching because my skin comes up in great weals where I have attacked it and this just makes the itching worse. Antihistamines seem to work a bit. The Christie in Manchester wants me to continue on Aciclovir for…[Read more]

]]> e78f040be31bff7dffe59934e99dbb2d http://www.myeloma.org.uk/forums/topic/franks-sct-take-2/page/3/#post-102055 Mon, 25 Mar 2013 21:39:42 +0000 Ann and Pete,
I had my transplant at the end of November and I found that I did not have to shave again until end of January. Other body hair, in all sorts of interesting places, continued to fall out during this period as well. I am still getting very itchy skin and, apart from dryness, nurse suggested that could be a result of hair starting to…[Read more]

]]> 4aa4fdbc6f47e3756778a8d996a35793 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/2/#post-101585 Tue, 12 Mar 2013 19:58:09 +0000 Hi Peter,
I have edited my post by taking out the little 'less than' symbol. I think the soft ware interpreted the symbol to mean 'delete everything after it'.
Chris

]]> 9b009599d2991a7bb7d565abafeee91d http://www.myeloma.org.uk/forums/topic/rcd-cycle-6-cancelled-sct-prep-starts-on-monday#post-102094 Tue, 12 Mar 2013 19:51:54 +0000 Hi Sarah Jane,
If you search for SCT on the discussion forum you will find lots of examples of personal experience. I found them very useful. The Gcsf is quite likely to give you some bone pain so make sure you have some paracetamol handy would be my advice. The actual harvest procedure is not too bad at all but listen carefully to what the…[Read more]

]]> 1d48ab30830e7a5038c15206b0d20b9c http://www.myeloma.org.uk/forums/topic/rcd-cycle-6-cancelled-sct-prep-starts-on-monday#post-102093 Tue, 12 Mar 2013 19:51:26 +0000 Hi Sarah Jane,
If you search for SCT on the discussion forum you will find lots of examples of personal experience. I found them very useful. The Gcsf is quite likely to give you some bone pain so make sure you have some paracetamol handy would be my advice. The actual harvest procedure is not too bad at all but listen carefully to what the…[Read more]

]]> d57650aace981b46cd779c20053fbb74 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/2/#post-101583 Tue, 12 Mar 2013 09:03:12 +0000 Hi Peter,
I was referred to the Christie under the NHS and they did do a PP test 2 months after the transplant and found less than 2 which is what I had at the end of the CDT. The Christie does not want to see me again until November. UHSM measured my PP a week after The Christie and found 2.4 so I wonder about the precision of the test at these…[Read more]

]]> 3fe7f7369317fdfc8a35ce851fa153d6 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/2/#post-101581 Mon, 11 Mar 2013 14:55:57 +0000 Hi Peter,
Glad to hear that you are doing so well. If I was still in harness I don't think I would have felt like going back to work so soon.
We spent last Thursday to Sunday in London, much against my wife's better judgement because we spent quite a lot of time in big crowds. Let's hope that I didn't pick up any nasty bugs. The only after…[Read more]

]]> 6a56b7dd64270d5658b5ad5ad8be92c8 http://www.myeloma.org.uk/forums/topic/garrys-sct-journey#post-101957 Mon, 04 Mar 2013 21:31:31 +0000 Hi Louise,
I had my transplant at the end of last November so still fresh in my mind. The Christie Hospital where I had mine let your friends bring in ready meals, soups etc that they would store and heat up in their kitchen when asked for. I found that a blessing. I also liked M&S and Sainsbury's jellies. Live yoghurts were forbidden so watch…[Read more]

]]> 2e61581d177dcf359cc0759dc079d0b6 http://www.myeloma.org.uk/forums/topic/lumbar-kyphoplasty#post-92169 Wed, 27 Feb 2013 17:32:14 +0000 Hi Shirl,
I am in a very similar position with crushed thoracic vertebrae and back ache. After the 7 cycles of CDT and the SCT I have been referred to the Manchester Royal Infirmary but it all seems to be taking ages. Looks like a 3 month wait for a vertebral MRI to start with. I wonder where you had your op done and how much investigation was…[Read more]

]]> a6580e461f697650ff753cfc8b1a8c4d http://www.myeloma.org.uk/forums/topic/vcd-onto-rcd#post-105714 Thu, 21 Feb 2013 22:34:29 +0000 Hi Clair,
So sorry to hear about your dad. Yes, on top of the wretched myeloma the treatment has all those horrible side effects. I had two crushed vertebrae and that combined with constipation did not make for a comfortable time. There are some pretty strong drugs that can help with the constipation. I got so desperate that I had enemas and a…[Read more]

]]> fbbce1ca6a7231015f8b0e8815f4eeba http://www.myeloma.org.uk/forums/topic/chemo-brain-chemo-fog#post-105153 Thu, 21 Feb 2013 22:18:47 +0000 Hi Sandra,
I was told that shingles is fairly common after high dose chemo. I suppose that it can occur at any time after the treatment because there is no vaccination against it. At The Christie they give Aciclovir for 6 months because they were seeing a number of patients getting shingles after 4 months but apparently not all clinics give…[Read more]

]]> 72072e735dab307cb99afc4244c43fe7 http://www.myeloma.org.uk/forums/topic/melphalan#post-87284 Sat, 16 Feb 2013 19:31:05 +0000 Hi Gina,
Sorry to hear your news. I got the impression too that Melphalan is quite an old drug. I think that most people in the UK who are having high dose chemo followed by stem cell transplant are given Melphalan as a once off knock out blow. I had it in December and it was not pleasant at all.
Sorry that I cannot be more helpful.
Chris

]]> c106f20ea98a6ddbc6fb5d7ee1dbf0e0 http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14/page/2/#post-101579 Sat, 16 Feb 2013 14:07:44 +0000 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…[Read more]

]]> 55472a75f92ce454b4077de2764b6f8d http://www.myeloma.org.uk/forums/topic/sct-and-pps-levels/page/2/#post-101685 Thu, 14 Feb 2013 16:02:13 +0000 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…[Read more]

]]> f2897ab690c92cba2e10d7be8bd3d772 http://www.myeloma.org.uk/forums/topic/sct-and-pps-levels/page/2/#post-101681 Wed, 13 Feb 2013 22:32:03 +0000 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…[Read more]

]]> 71d17fc3a6e8150dca77ebfacdedce41 http://www.myeloma.org.uk/forums/topic/sct-and-pps-levels#post-101668 Wed, 13 Feb 2013 20:03:46 +0000 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…[Read more]

]]> a0810d6350921d4a8e3e73eb2b46c50d http://www.myeloma.org.uk/forums/topic/sct-and-pps-levels#post-101677 Wed, 13 Feb 2013 19:49:52 +0000 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…[Read more]

]]> f505480f9fc6786915b3103fecadc12a http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14#post-101577 Thu, 31 Jan 2013 18:29:08 +0000 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…[Read more]

]]> b1da329dd7d54acd8bafa89edf2b0d5a http://www.myeloma.org.uk/forums/topic/sct-looming-but-pp-plateau-at-14#post-101575 Wed, 30 Jan 2013 22:18:02 +0000 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…[Read more]

]]> 5818b54048f65cd98ab76d9e0d0706a2 http://www.myeloma.org.uk/forums/topic/harvesting-for-sct/page/3/#post-101094 Fri, 18 Jan 2013 20:15:07 +0000 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…[Read more]

]]> c2b4c7aafea2ab888ae5e6aa309fd5fc http://www.myeloma.org.uk/forums/topic/phils-sct-journey/page/7/#post-101335 Mon, 14 Jan 2013 15:16:02 +0000 Well done both of you and welcome home. Lots of good advice given too by those who have trod the path before.
Chris

]]> 3bdf89d2678d882295c8bec9f0e33d29 http://www.myeloma.org.uk/forums/topic/latest-results#post-94090 Tue, 08 Jan 2013 17:30:03 +0000 HI,
That is good news indeed. Excuse my ignorance but what is Thal? I have googled it but with no result.
Chris

]]> e11ff9efda28bc30cb2b78105ec9dfb7 http://www.myeloma.org.uk/forums/topic/question-about-blood-test-results#post-101434 Tue, 08 Jan 2013 17:21:10 +0000 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

]]> 1cf63107baa741390eb9fcdfa9a953f7 http://www.myeloma.org.uk/forums/topic/phils-sct-journey/page/6/#post-101322 Sun, 06 Jan 2013 20:13:21 +0000 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…[Read more]

]]> d0d64bae25a20cd157df1eaede813b1d http://www.myeloma.org.uk/forums/topic/can-we-choose-a-hospital#post-101421 Sun, 06 Jan 2013 17:23:56 +0000 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

]]> 06bb8f5a9a41882f6e87469c47afd0e4 http://www.myeloma.org.uk/forums/topic/phils-sct-journey/page/4/#post-101293 Sun, 30 Dec 2012 09:43:04 +0000 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…[Read more]

]]> fb2123e4ef3fb93214e4cec6d59d7ba7 http://www.myeloma.org.uk/forums/topic/best-place-for-treatment-within-the-uk/page/2/#post-97406 Fri, 21 Dec 2012 19:33:06 +0000 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…[Read more]

]]> 8ccaba5fbcae5c705a29309d9ecb235c http://www.myeloma.org.uk/forums/topic/harvesting-for-sct#post-101078 Tue, 18 Dec 2012 16:18:33 +0000 Hi Peter,
I came out on 7th Dec after 17 days. I think it is important to go in believing that it will be for 4 weeks. Any remission is then seen as a bonus. I was fortunate in that I did not develop any serious infection. Apparently infections can slow up the reinstatement of the white blood cells. I now feel reasonably normal apart from some…[Read more]

]]> ee3eac17f6661f28968feca5f58916cb http://www.myeloma.org.uk/forums/topic/phils-sct-journey#post-101244 Tue, 18 Dec 2012 09:18:08 +0000 I would recommend using the hospital's counting system. In my experience everything happened like clockwork on the appointed day. In The Christie I was handed an A4 sheet outlying the protocol for the whole affair that gave me a good idea when to expect all the different treatments.
Good luck,
Chris

]]> 6147207e8ffe53836b83e4ca834352d9 http://www.myeloma.org.uk/forums/topic/harvesting-for-sct#post-101076 Mon, 17 Dec 2012 09:21:40 +0000 Hi Peter,
Glad the harvesting went well. My cells were reluctant to show themselves so had to go back for the second line of approach without cyclphosphamide but with gcsf and an injection costing £4,800. They still proved reluctant so eventually only gave enough for 1.25 transplants. Gcsf seems to leave me with back pain for 2 weeks every time…[Read more]

]]> f33d60070b050913eba3f93d7db58626 http://www.myeloma.org.uk/forums/topic/someone-to-talk-to/page/2/#post-86469 Tue, 02 Oct 2012 19:11:47 +0100 Hi Peter,
I will give a separate reply to this one. I started feeling better straight away – within a day or two anyway. After a fortnight I was talking about getting back on my bike but then the harvest procedure started :-(. The dose of cyclophosphamide left me nauseous for 3 days whereas that had not been a problem during the 3 week cycles.…[Read more]

]]> 24b7e6c29cd24a6bebb8bd4cf8c33cff http://www.myeloma.org.uk/forums/topic/someone-to-talk-to/page/2/#post-86466 Tue, 02 Oct 2012 19:03:16 +0100 Hi Peter,
It is worth getting the Myeloma.org info. sheet on bisphosphonates. There is an implication in it that you might be on them for ever. Where are you going for treatment? I am at Wythenshawe under Dr. Simon Watt. I was put on Zometa straight away but I had got fractures of my vertebrae that needed attention. The info. sheet suggests that…[Read more]

]]> 949c4aa9088fbbf76d0ce61161ab2d65 http://www.myeloma.org.uk/forums/topic/someone-to-talk-to/page/2/#post-86464 Mon, 01 Oct 2012 19:59:43 +0100 Hi Peter,
Seems I am a couple of months ahead of you, having been diagnosed in Easter week. A month earlier I had 'strained my back' but the strain turned out to be crushed vertebrae. 7 cycles of CTD knocked my p protein on the head and as I am (just) young enough for the high dose chemo have started the procedure. Was at the Christie at 8.30…[Read more]

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