Great news!

I'm so happy - today I had my annual CT scans and they came back clear! I don't have to have another one for 12 months - unless of course something else shows up. I was reasonably confident that nothing would show up, but of course I was feeling fine when I was first diagnosed so that isn't really an accurate measure!!

My haematologist is still talking about trying for a stem cell collection. But remembering that we were never able to collect stem cells when I was in hospital, he wants to wait for some new drug(s) that assist in the production of stem cells for harvesting to be available on a trial here in Australia that I should be able to access. I don't know if/when we'd go for an autologous stemcell transplant - he told me that he has some MCL patients that had chemo followed by an auto SCT, and others that didn't have the transplant, and both groups are doing equally as well. But he agreed it would be a good thing to have 'in our back pockets' if it was possible.

The other good news is that he'd ordered a fairly full blood test, partly to test my immunoglobulin levels. I've been on monthly IV-IG infusions for about 7 months now, and they are definitely showing an improvement. As I said to him - I was pretty convinced they were improving because it is now over 6 weeks since I've had a chest infection needing me to go onto antibiotics. All this year, the previous gap between antibiotics has been around 10-12 days at most! He repeated that with IV-IG infusions, they start to kick in around the 6 months mark, and it isn't till around the 12 months mark that the full effect is felt.

This is some of the results:

igG - 5.7 (g/L) (normal range = 6.6 - 14.9)
igA - 0.8 (g/L) (normal 0.7 - 3.6)
igM - 0.3 (g/L) (normal 0.4 - 1.6)

Haemoglobin - 120 g/L
Platelets - 123
WCC - 5.4
Neutrophils 3.3

All good! Well, Platelets are slightly reduced but nothing to worry about. And they did some 'cell surface marker analysis' and he said very few B cells showed up, and NO mantle cells. Which is a very good thing!!!

New month new problem! (But I am smiling!)

Well, that's not quite true - I think I caught this cold at the end of last month, not February! But whatever - I caught a cold from someone (and don't think I don't know who you are!), and apart from the general 'wrongness' of geting a cold in the middle of summer!, it gradually went to my chest (of course!) and I started to feel worse and worse. By last Thursday I had to take the day off work and went to see my local GP. I did try to ring both my specialist and the respiratory physician but one was on holiday and the other had gone overseas!!

Anyway, turned out I had a temp of 38.4degC so the GP was more than happy to give me some antibiotics. They started to take the edge off by the weekend (which was an unavoidably busy weekend working on a website - someone had already come down from Rockhampton - 1000ks away to work on it with me!) So it was really lucky I started to pick up then! I've still got all the trappings of a cold - blowing my nose constantly, coughing, coughing, coughing ... But I've got my normal levels of energy back and feel fine.

Today was the next immunoglobulin infusion, plus another doctor's appointment. Dr Bentley told me I'd have to expect to catch things like colds easier, and for them to take longer to be got rid of - great! He changed the antibiotics I'm on, and also I'd had another blood test last week and he gave me the results.

Haemaglobin - 113
WCC - 8.4 (!!!)
Neutrophils - 6.2

They are certainly something to be excited about - especially the WCC. Normal range is 4.0 - 11.0!!

My immunoglobulin levels were also tested - I know nothing about these, although apparently when I started having the IV-IG, it was 2 which is apparently extremely low! It has gone up to 5 - he said he would have been happier with 6! But at least it's on the way up.

So - that's the latest issue of my health news! Stay posted for next month's issue ...

Report from doctor's visits (plural!)

Well, this week I somehow had 2 doctor's appointments plus the 2nd IV-IG (immunoglobulin infusion - see, I'm getting to know all the shortcuts!)

On Monday I saw Dr Bentley, followed by the IV-IG. Meeting with him was good - he even gave me a hug, and said I was looking well! He gave me the results from the bloodtest I'd had before my previous visit last December:

Haemoglobin: 111
Platelets: 131
WCC: 3.7
Neutrophils: 1.9

Not too bad. They were a bit down from October, but probably because of all the antibiotics etc. I'd been taking. I'll have another bloodtest before I see him again in a month's time, and hopefully they'll be further up then.

The IV-IG went much quicker than last time. I had all the drugs before starting, to stop me having a reaction to it, and I think it took about 3.5 hours this time. I'll time it properly next time so I know!

Then today (Wednesday) I had an appointment with a respiratory physician. Because of the recently-discovered bronchiectasis that I have. I had to do this 'lung function' test, and all that blowing out hard etc. and re-doing and re-doing - it made me feel that I didn't have that much 'lung capacity' after all! But then when I went it to see the doctor, he ended up telling me that I had above-average lung capacity (for my age!!) So I was pretty pleased about that! I'm sure it's from the ashtanga yoga breathing (ujjayi breath) I've been doing for the past 7 or so years of yoga!

Apart from that, he did various pokings and proddings and asked heaps of questions (as well as reviewing the CT scans). And ended up saying that it was very mild, and as long as I kept up the yoga and other exercise I wouldn't need to do any of the other exercises the physios had given me. And just reiterated what both Dr Bentley and my GP said, that if I get a bronchial infection I'd need to go onto antibiotics quickly, etc etc. And no need to come back to see him at the moment ...

So all in all, pretty good news. I'm feeling pretty happy about things!

It wasn't so bad!

So, I had the first gammaglubulin infusion (IVIG) today, and apart from the fact that I had to get up at 5.15am to get to the hospital for 7am, it wasn't that bad really!

Of course I did have a few reactions which slowed things down. They up the flow-rate gradually and once they started doing this I started to have a bit of difficulty breathing. (Nothing dramatic - just couldn't breathe in as much as normal.) So, the dose went down again for a while. Then the nurse upped it again a couple of times, and I suddenly started shivering, and feeling really cold. So the nurse rang my doctor, and I got given an antihistamine and some cortizoid steroid or other. They had to wait for half an hour for them to kick in, and then my infusions were re-started, this time successfully! The flow rate get getting raised with no problems!

It was nice to see all the old familiar faces, and they were all pleased to see me too (even the cleaners and people who bring meals round remembered me!) And sitting in the day chemo room is a really interesting experience! People who haven't had cancer, or a close friend/relative with it would never imagine it like this. Everyone is really cheerful and happy, reading their books/newspapers/magazines, listening to their iPods, chatting with their friends who've come in with them. Not the sort of picture that would come to mind about having to have chemo! Because the type of chemo I had (HyperCVAD) was very intense, I actually had my treatment as an in-patient in the hospital - stayed in for around 14 days each time. So this is a new experience for me!

Anyway, I guess it won't be that bad, especially if I either don't have those reactions again, or else I'm given the drugs at the beginning. It took about 5 hours this time but without all the stops and starts it should get back down to no more than 4 hours I think. Apparently the effect is cumulative - it won't make that much difference after just one treatment, but will build up over the next few months. We shall see ... :)

Sigh! and a bit of a hissy fit!

Well, I saw my specialist today. And as suspected (see this post on my other blog!), because my immunoglobulin levels are so low I do have to have the monthly infusions ... in fact I'm having the first one on Friday!

I'm just going to have a bit of a hissy fit, OK, and then I'll calm down and it'll end up being a part of my 'normal' (!) life ... :)

But right now, this second - I so did not want this to be happening to me! I know it's not a huge thing in the whole scheme of things, specially after what's happened to me in the last year or so! But somehow it really got to me. Almost more than when I was first diagnosed, oddly enough!

Actually, just re-reading that makes me smile and feel somewhat better! I really do need to get a grip on reality!

The waiting room was heaving with people and Dr B was a little harassed! I think there had been some double-bookings or something. And there was me trying to weazel out of having to go through this whole regime (which I might add, is open-ended - ie. every month indefinitely!!). I kept bringing up this and that that I'd heard about on forums, or read on blogs, and he basically kept coming back to the fact that he was the lymphoma specialist and he sees/treats first-hand many many lymphoma patients. Really, (and this is me speaking now) - who is the lymphoma expert? Me because I've read a lot about other people's experiences with it, or him who is dealing with patients and treating their problems every day ... ?!

I think it's the bronchiectasis that I've developed that is the main culprit. If I hadn't come down with that, then even though my immunoglobulin levels are low, I might well have been able to avoid the infusions. But apparently once you have that, it's a prime source of infection in your lungs and because I have a damaged immune system I'd be likely to end up in hospital for a week each time!

So - there's no avoiding it! As I knew all the time. My feeble attempts at knowing what was the best treatment for me better than him were always bound to fail. And I really do know that in a month or two, this will turn into 'no big deal' - as my friend kept telling me at lunch! I was in such a state through the appointment that I never asked about my blood counts or asked a lot of the other questions I had ... I'll be seeing him again in a month and hopefully I'll do all that then!

I did go up and see the nurses after my appointment (Dr B's rooms are on the ground floor of the hospital I was in) and they were very pleased to see me (and the home-made fudge I'd brought them as a Christmas present!) Big hugs all round - and they said they'd make sure I got through the infusions quickly!!

I do feel better after all that whinging (Aussie term meaning complaining!) and stuff! Hopefully I've now got it off my chest and I shall just go back to enjoying life! Which is good, let me not forget that! :)