[FOXLEYParticipant]

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 on surgery at that stage. The only advice that I got was to do back exercises to help my back muscles conform to the new shape of my spine.
Good luck,
Chris

[FOXLEYParticipant]

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 after transplant and the consultant said that it only went to zero (as I had been hoping) in about 15% of patients. Stabilising the disease seems to be what is hoped for in the majority of patients.
I do hope you have better news soon.
Chris

[FOXLEYParticipant]

Hi Dal
Been there, done that! Glad I was not the only one.
Chris

[FOXLEYParticipant]

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 6 months and I seem to remember a post to this effect?
Has anybody else got a similar problem?
Chris

[FOXLEYParticipant]

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 grow again. The part of my finger nails that was hit by the chemo must have grown to the finger tip about 2 weeks ago as well because my nails are all crumbling at the end. These are all pretty minor irritations I suppose within the scope of what MM can throw at you.
Chris

[FOXLEYParticipant]

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

[FOXLEYParticipant]

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 nurses say. I started getting some tingly lips for which the remedy was a calcium drip.
Good luck with it all.
Chris

[FOXLEYParticipant]

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 nurses say. I started getting some tingly lips for which the remedy was a calcium drip.
Good luck with it all.
Chris

[FOXLEYParticipant]

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 low levels. The UHSM consultant does not use the word remission as far as I can tell.
Photo was taken in Sept 2011 when I collected my Humanities degree from the OU. Had more hair then!
Chris

[FOXLEYParticipant]

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 effect that I have from the SCT is a delicate digestion. If I am not cautious alcohol and rich food together can have bad consequences sooner that would have been expected otherwise. I also have intermittent pain from my crushed vertebrae. I am awaiting a scan at the Manchester Royal Infirmary.
The whole question of remission seems to be vague immediately after the transplant. The only haematology consultant that I have seen at the Christie since discharge was on Christmas day when I ran a temperature. I go to University Hospital of South Manchester for Zometa every 4 weeks and last Wednesday I was told that my PP had gone up from <2 before transplant to 2.4 4 weeks ago. Consultant did not seem concerned and said that no conclusions could be drawn from it. I asked whether a bone marrow biopsy would tell him more and he said no. This is because at such low levels of PP looking for cells in the bone marrow through the microscope is pretty hit and miss and anyway the findings would not affect my treatment. I forgot to ask about maintenance but will do next time.
Let's hope you shake off your cough soon.
Chris

[FOXLEYParticipant]

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 out.
On the other hand my appetite steadily decreased over the 10 days and, as Garry will almost certainly get the runs, he might be glad that he is not eating too much!
Wish him all the best,
Chris

[FOXLEYParticipant]

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 done beforehand. Would be grateful for anything about it that you feel you could share.
Chris

[FOXLEYParticipant]

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 drug that can be carcinogenic. When I queried this the consultant said ' well you have cancer anyway!'
I eventually got things under control by eating plenty of dried fruit and stewed prunes.
Give my best wishes to your dad.
Chris

[FOXLEYParticipant]

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 Aciclovir for this length of time.
I do hope you feel better soon.
Chris

[FOXLEYParticipant]

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

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