Stem Cell collection update ... and blog hiatus

I have pretty much put this blog to sleep as far as posting goes. I may resurrect it in the future if necessary (though of course I hope never to have to!) But I'm hopeful that it will remain a useful resource for people recently diagnosed with Mantle Cell Lymphoma - just to show that  it can be dealt with; you can get through treatment, often without too many side effects; and that life does indeed go on and almost go back to normal once in remission! That's how it's been for me. Yes there are the odd health issues/things I have to deal with, but I love my life and feel very positive about it continuing a long and good time!

I'll mostly be posting little health updates into my journeys blog as part of everyday life. But I did just realise/remember that I had a Stem Cell collection back in May 2010 which I posted about there, and I don't think that can really be counted as a 'little health update'! It was quite an ordeal (in a minor kind of way!) ...  I'm not going to re-post all of that here, but instead link to the post so that people can read about it. So, here's the link: http://susiegb.blogspot.com/2010/05/health-not-yoga.html. (The 'ordeal' bit was more of a mis-management/understanding issue I hasten to add!)

Good blood test results, but no sleep!

I went to have my monthly IV-IG infusion yesterday. The nurses always do blood tests before they start, and I was pretty pleased to see that my WCC and neutrofils had come back into the normal range! They'd been down for the past couple of months ...

WCC - 4.4 (normal range 4.0 - 11.0)
Neutrophils - 2.6 (2.0 - 8.0)
Platelets - 123 (150 - 450)

Platelets are still down but they may well always be down! In fact, looking at the previous post they were exactly the same then (July)!!

I'm seeing Dr B again next month before the December infusion. He's ordered up some extra blood tests that I'll get done before I go and see him. Hopefully all will be well! :)

However, I should note that it's actually 4.00am right now! I am not sure that I have slept at all - if I did it was only for 15 minutes here and there! I'm feeling OK at the moment but I don't expect I will by the end of the work day ... sigh! I'm wondering if this is because of one of the drugs they give me prior to the infusion, to stop reactions. Some 'cortico steroid'? Does that sound right? Who knows ... ! Anyway, I think I'm going to refuse to have this drug again next time. I really don't like tossing and turning all night! I'll see what the doctor says at least!

A couple of days ago it was the Melbourne Cup - the (horse) 'race that stops the nation'! It's one of those things like the Grand National in England. Everyone at work has Melbourne Cup lunches, wears silly hats and gets big TVs in to watch the race at work! And then there are the sweeps. You know - you put in $1, $2, $5 (whatever the amount for that sweep) and you are randomly assigned a horse. Well, one of the young IT Helpdesk guys was persuaded to set 2-3 of these these up for our department, despite protestations that he didn't know how to. So he spent I would estimate at least a day setting up these complex Excel spreadsheets that would randomly assign a horse to a person. And then we discovered after the race that he hadn't realised that he had to 'fill' each sweep! And there was at least one sweep where the winning horse hadn't been assigned to anyone!

I don't think he's ever going to live this down! I told the nurses and they all fell about laughing! At least he's ensured he won't be roped in to do this again next year!!

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!!!

Drinking wine is good for NHL!!

http://www.genengnews.com/news/bnitem_print.aspx?name=53145815

".. This study was the first to examine the link among patients with non-Hodgkin's lymphoma. Han and her colleagues analyzed data about 546 women with non-Hodgkin's lymphoma.

They found that those who drank wine had a 76 percent five-year survival compared with 68 percent for non-wine drinkers. Further research found five-year, disease-free survival was 70 percent among those who drank wine compared with 65 percent among non-wine drinkers ..."

Couldn't resist posting this when I read about it on one of the NHL boards! I've drunk wine for more years than I care to remember, so it's all good news!! I did stop when I was going through chemo, but started drinking wine again a few months later ... in moderation of course!

Everything seems to be going well health-wise. I've been on antibiotics for 3 weeks now - am trying to get rid of the cough which comes back everytime I stop a course. So I'm taking 3 lots - 30 days worth in all, and then we shall see. If it comes back again I think I'll have to go back to the chest physician again.

Lately I've been going to have my monthly IV-IG infusions without seeing Dr Bentley. He said just to come and see him if I had a problem. I'll be having a CT scan in the next couple of months so will be seeing him about that, but otherwise life is just flowing on happily normally!

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 ... :)