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]

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]

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]

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]

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]

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]

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]

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]

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

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]

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]

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]

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]

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]

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]

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]

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]

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