21 January 2013 – Treatment Decisions (Cancer and Me 22)

(NB. This is when I caught up and started writing as things happen, so you will notice the change in style from here onwards. I could periodically re-review and cut bits out with the benefit of hindsight, but actually I think it’s helpful to see how thinking changes and reflections change. What is important one week is less important the next week. What is urgent one day suddenly changes. If you ‘cut to the chase’ and just give the final diagnosis and treatment plan you miss one of the biggest things – the uncertainty and the general messiness that cancer brings to life and living.)

The meeting with the oncology doctor in Southampton Hospital on 21 Jan 2013 gave us much food for thought. One of the things that felt unusual about the meeting, and which has added to the stress afterwards, is that I seem to have choices about the next steps in treatment. To date, at every stage, the doctors have presented me with the next steps, and I haven’t felt like I’ve had a choice. But now I can do one or two of four things:

1. Nothing! Until the next relapse at any rate. I could just decide I’ve had enough of doctors and hospitals and, so long as I am in remission (which looks and feels like the case), wait until the disease recurs. Since the current relapse came after two years, I would assume the next one to be a similar period. Then at the next relapse we would just go through the same procedure – have some chemo and talk about what else is available.
2. Rituximab maintenance treatment. Two years going back to the hospital for part of a day every two months to be given this one drug. That’s what I was talking about at the end of my last post. The doctor in Southampton gave some more information about that option. Basically on average it seems to extend remission periods for follicular lymphoma by 50%. So that would mean I would expect to relapse in three years rather than two.
3. Autologous stem cell transplant. This is where they take some of my own stem cells, while I am in remission, and then give an extreme dose of chemotherapy to kill all my blood cells. Then they give me the healthy stem cells back, which then grow into healthy blood cells. This gives the only chance there is for a complete cure. About 50% of people are still clear of follicular lymphoma 10 years after a stem cell transplant. More about this below.
4. Harvest the stem cells now, and put them in the freezer and do the transplant itself some time in the future. Since I am feeling pretty healthy at the moment I may want to defer a stem cell transplant for a much later date, but it may be worth taking the stem cells now whilst I am clear of the lymphoma.

Stem cell transplants sound pretty unpleasant, though. The doctor was careful to outline the risks and the reality of the effects of the treatment. Since the extreme chemo will kill all my blood cells it will leave me with no immune system. The medical team will protect me with various drugs, and I will be kept in isolation in hospital until my white cells have recovered enough. But he said that virtually everyone gets mouth ulcers, and most also suffer with diarrhoea because of stomach ulcers and infections. He said most people suffer with some sort of infection. Some will develop septicaemia and have to be in intensive care with intravenous antibiotics. And about 1 in 100 end up with such bad infections that they die.

And of course I would also be anaemic, so I’d be white as a sheet and very tired.

The extreme chemo lasts 6 days, then 3 days later the stem cells are injected, and then it takes 2-3 weeks for the blood cells to regenerate. So that’s about a month in hospital. And then there’s another 3-6 months or more to recover to be well enough to work.

It’s definitely not something that can be taken lightly. And the thought of going in to hospital healthy and well (apart from the sneaky cancer), and then being made very poorly and having to take at least 6 months off work, is something I can’t get my head around.

And even the harvesting process itself is not a breeze. In order to get the stem cells (which are the basic cells from which all the different types of blood cells grow) out of my body they have to first be ‘mobilised’. Blood cells are made in the bone marrow, and therefore that is where stem cells normally reside. However, they can come out into the blood stream, and that’s where they are taken from when they harvest stem cells for a transplant. But in order to get enough stem cells they have to ‘mobilise’ them to come out into the blood stream in large enough volume.

To mobilise the stem cells two things are done. First a high dose of cyclophosphomide is given over the course of a day. That’s one of the chemo drugs that I’ve had before – the ‘C’ in R-CHOP and R-CVP. But in this case, apparently, my hair will almost definitely fall out. Then every day for the following week I would have to give myself GCSF (growth factor) injections. Then at the end of the week I would go back to hospital and have my stem cells removed (provided that a blood test showed there were enough there). And if they didn’t get enough stem cells on that day, I’d have to go back the next day.

In order to facilitate the amount of fluid and blood that would need to be given and taken during that 8 or 9 day period, and because my veins have suffered from the chemo I’ve had already, the doctor said that they would install a ‘Hickman line’. That’s like a PICC line, but going in through the chest, rather than the upper arm. It’s a semi-permanent tube that goes through larger veins into one of the valves just above your heart. It would be left there for the duration of the procedure (and for the transplant as well if I went on to have that straight after).

In my case I will have a two-way valve on the outside – one for in, the other for out. That’s because the harvest process involves sucking the blood out, separating out stem cells, and then putting the blood back. At any one time on that day there is no more than 160 ml of blood outside the body.

So, choices to be made.

It seems sensible to me at least have my stem cells harvested. When I relapsed I remember the doctor saying that they found lymphoma in my bone marrow. I also remember him saying that that was “surprising”. On the assumption that my bone marrow is now clear, it’s probably a good idea to get the stem cells out before it gets polluted with lymphoma again.

But whether to go for the transplant itself this year, I’m not so sure. I think it’s probably better to wait until the next relapse. Then I can prepare mentally and financially. We can save up some money so that I can be off work. And the kids will be older and better able to cope in three years time.

If I don’t go for the transplant immediately it does sound worthwhile having the Rituximab maintenance treatment, even though it does only extend remission by 50% – in my case only a year. But on the other hand that only leaves me treatment-free for a year. I’ll have two years of treatment and then only a year or so when I am just having check ups. So this blasted disease is going to be on my mind almost constantly for years to come.

It’s a week after that meeting and I am feeling tired!! I guess I’m just not as young as I was!