Consultant Day number 5 - Oct 16th



 This is an update on the boring practical side of having Myeloma, as I had the monthly meeting with the consultant yesterday and she told me how things are going and what is going to happen next. 

It seems that my body is responding in the way they want to the 4-drug chemotherapy that I have now finished nearly three months of. There is one month more to go this time round. She said the proteins produced by the cancer have come down and stabilised at about 12g per litre, having started at nearly 30. This is apparently good enough, and the other measures of 'light chains' (past my biochemical bus-stop I'm afraid) is also showing a good drop, which is continuing. 

Side-effects have been very limited and in exchange for any extra glitches, the chemo has stopped the quite sharp pain which I had in my sternum and ribs at the start of the treatment. I couldn't do any sit-ups for about a month but can do them now, so am able to stay as fit as I want to. Tiredness hasn't been an issue either; in fact the Steroids sometimes leave me needing much less sleep. 

The next stages are coming clearer now, and I will soon get the confirmation appointment letters, but this is basically  what should happen:

  • End of October: go up to Addenbrokes for them to assess me for the stem cell harvesting
  • third week in November: Start cyclophosphamide to stimulate stem cell production (and kill some more cancer cells at the same time)
  • Last week in November: go up to Addenbrokes for stem-cell harvesting. I think they need about half a million. I do one day of harvesting. If they don't get enough in the first go I stay and do a second day of it. They put your blood out of one arm, through a machine, then back into the other arm for about 3 or 4 hours.
  • December 12th: go and sign forms for the transplant and get briefing about it
  • December 15th: admitted and prepped, insert Hickson Line in chest, plus high dose chemotherapy (I think it is Melphalan)
  • December 16th: Stem cell transplant
  • Then it is about three or four weeks of barrier nursing and probably general unpleasantness in the rest of my body.
  • I  should be out in the early part of January
So, how do I feel about it all?

Obviously, I'd rather not have myeloma. But having it, I am happy to trust the medical team here that have dealt with hundreds of similar cases. They are clear and positive and give the reasons for each thing that they are recommending. They come with a good reputation and have carried out a lot of these courses of treatment. They are happy to talk about things which they do differently now, as a result of experience and evaluation. 

They are also working in a field that has developed very positively over the last 20 years. Since the 1980s I believe survival in myeloma has increased by a factor of three or four, and there are several interesting new therapies being tested. Nobody is saying the disease will become curable, but the amount of time you get and the quality of that time does seem to be still on the rise. Which is much better than for many other cancers. 

So, I am having as much fun as I can over the next month and a half in advance of the bumpy stuff in December. And as I start to recover in January and February, I will be dying to get back into the fun of life. And thank you all for coming along on the ride.

Comments

  1. Thanks for your positiveness in such a difficult time!

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  2. Wow, incredible grit and determination,,,
    Wishing you a smooth ride through next lot of treatments.. this also gives the doc some more experience for the future
    Love and light form South Africa
    Angie friend Barbra

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  3. Thank you for the fascinating details...it all sounds very positive! (while not forgetting the possibly gruelling time spent while the treatment is going on).
    Onwards and upwards! And wishing you all the luck in the world xxx

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  4. Thinking of you as you face each step.

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  5. Not 'boring' in the slightest Patrick if, like me you happen to be fascinated with what the medical profession and scientific advances are up to. So keep writing about the 'boring' bits too please!

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