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

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

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]

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]

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