Hi Charlie and Mary,
There are just a lot of things that are unpredictable about this disease. My PP went down by about 50% every 3 weeks during the CTD and bottomed out at less than 2. I was disappointed to find that they had gone up to 2.3 after the high dose chemo and 6 months later they are at 3.2. Main thing is that the SCT worked as far as restoring my bone marrow is concerned and I feel well.
I have now come across two definitions for a successful SCT. One is stabilising the myeloma and the other is recovery of normal marrow function after killing it with the chemo. 20 years ago or more they used to give high dose chemo before SCT's had been developed and a lot of patients died because they died of subsequent infections for lack of neutrophils.
Chris
Hi Charlie and Mary,
Yes the undetectable PP is excellent news. I think everybody would recommend using this little window of opportunity between the first line of treatment and the SCT to get as fit as you possibly can because the high dose chemo sure knocks a lot out of you. If the harvest is happening in Southampton there will be many return visits to the clinic and you might want to talk about financial help with that. At the centre I went to there was an excellent specialist nurse who talked us through at length all the issues connected with the harvest so it is probably best to start there.
Good luck,
Chris
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 Christie gave me 6 months of Aciclovir, saying that they knew that some other centres only gave 3 months but that in their experience shingles was often an issue even after 3 months.
Hope you enjoy the swimming.
Chris
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 about this wretched disease.
Chris
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 big help.
I feel pretty exhausted after 6 miles though. Consultant emphasised that I should do as much low impact exercise as possible to strengthen my bones because the chemo, as well as the MM, will have weakened them.
The UHSM haematology consultant also mentioned that he did not bother with BMB at low PP as it was very difficult to get a good count.
What are you doing on the fitness front?
Chris
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 be a good reason.
As regards a scan I just had a full skeletal X-ray on diagnosis at the request of the haematology consultant. He saw no point in an MRI. It was a year later when I finally got to see a consultant who deals with bone weakness caused by osteoporosis or MM that an MRI was prescribed.
Over the past year I have learned from this discussion forum that there is no uniformity in treatment but in large part this is probably due to the individuality of the disease. One of the benefits of this forum is that it will equip you with a good many questions to ask your consultant and this will hopefully help you build up confidence in him/her. Don't forget to write the questions down though because my mind, at least, goes blank at the time. I also found it essential to have my wife with me as many words went in one ear and out the other.
Good luck
Chris
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 on the day I was diagnosed and have been told that it will continue for 2 years. I wonder why the delay in your case.
Chris
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 big help.
I feel pretty exhausted after 6 miles though. Consultant emphasised that I should do as much low impact exercise as possible to strengthen my bones because the chemo, as well as the MM, will have weakened them.
The UHSM haematology consultant also mentioned that he did not bother with BMB at low PP as it was very difficult to get a good count.
What are you doing on the fitness front?
Chris
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 appointment but it then took 3 months to get the scan – good old NHS! Net result it was all too late to do anything with my back except attempt stretching exercises. It is really disappointing how the time to get things done stretches out.
I do hope things move quicker for you.
Chris
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 give my bone marrow a rest.
The down side of having a very dilute concentration of stem cells in my blood was that the transplant had to be given as 6 sachets over two days.
Chris
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. Stability is what the medics appear to be looking for in the majority of patients.
Chris
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. Stability is what the medics appear to be looking for in the majority of patients.
Chris
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 often in on diagnosis of MM and b) because he knows my lifestyle and that I am not a back achy sort of person.
My GP was very contrite afterwards. I gave him copies of the Myeloma UK guidance for diagnosis of MM.
Chris
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 to go on a cycle tour of Ireland when I crushed my vertebrae as a result of doing some heavy lifting.
Chris
