Thursday, 27 November 2008

Hope Springs From Your Siblings Blood!

We had an appointment today with a doctor in Hammersmith hospital. I hassled my consultant that I'd like to see him, based on the fact that he suggest my last chemo when everyone else was out of ideas. My consultant contacted him with my details and I made an appointment for 10.30 today.
I was nervy all night in case my voice was going to disappear forever and slept elevated and anything else I could think of (it was when I was not elevated at all that it happened. So, clutching at straws, but you never know!). Strangely, I woke up feeling pretty good despite a 38.6 temperature.
Things were manic, just as they are most mornings in our house, what with kids to get ready and drop off at appropriate places. Time was ticking and it looked like we would be late and then Harry caught his foot and fell on the step as we were heading to the car (he was okay and more worried about the toy he dropped, I almost filled my pants when I saw him go). We dropped him off, then entrusted ourselves to the mighty SAT-NAV. According to the ETA, we would arrive bang on time for the appointment, so if parking was easy and we were right next to the clinic we'd be a couple of minutes late, so all good so far. We hit some traffic and my heart fell, but there wasn't much and my wifes majestic driving (eek!) got us ahead of schedule without triggering traffic cameras or getting traffic police on our tail, so all good. We got there and to reception bang on time, then were kept sat waiting for half an hour. Typical.
The doctor came out. He was smartly dressed, i.e. shirt and tie, but somehow managed to make it look a tad dishevelled, but hey, I was more interested in what he had to say and whether it was just the same of rubbish.
He went through my story so far and sympathised (I started to think he was going to say, nothing we can do). He then went through the various options normally used. He said because RCHOP, RICE and ESHAP chemo have failed, it is highly unlikely any other regimes would work, so chemo was not really a viable option. He said the radiotherapy was a good idea and that media stinal tumour usually respond very well (much more positive). He said the only other option was a stem cell transplant. This would involve high strength chemo, then adding back in stem cells to rebuild the now battered immune system. He then said that it was highly unlikely that would have an effect. I thought this was where he was going to offer to do it, but just for the sake of doing something and maybe, slim slim chance, might work a bit. I felt my heart start to dislodge it self and get ready to drop, but then there was a "but". I like "buts" in there situations. He then went on to say that in this situation, the option with the best, real chance of eradicating (I liked the use of this word) the tumour was to do stem cell transplant, but not use my cells. So, it go as before, but instead giving me back my immune system, I'd get someone elses (how romantic). The idea being that the new immune system sees the Lymphoma as foreign, something mine hasn't done, and lays into the bleeder. The chances of success are not amazingly high, I think 35% was guesstimated, but that's better than what was on offer (0%).
First step is to find a matching donor. The best and most compatible are siblings, with a 1 in 4 chance of matching (so sisters I'll be asking you soon if you fancy throwing any stem cells my way). If not then they will search for a match in the UK database and I am told it is usuaully easy to get one. The thing with a sibling donor is that there is less chance of nasty things happening at the beginning, which is slightly riskier with a non-sibling donor. So the risks for me are very real but not as bad as the 100% risk otherwise. So I'm excited. There is a new plan and it is progressing. The only danger is that the new little nodules will be left to there own devices, so the hope is they do not become troublesome!


Anonymous said...

This is fab news I am so pleased for you big guy.


Adam said...

That's a bit more positive mate, might help you to keep the chin up. How long will it take you to find a donor? If there's anything I can do just shout big dude.


Jaime said...

Glad to hear someone has a plan again. Trouble is, as I've found with Jacks doctors, you get some that will do the usual things and if none of those work, they'll just say oh well we tried. Then you get the great doctors that really do give a damn and will come up with some of the less used treatments and do everything they can and not stop unil there are no ideas left. Sounds as though Mr Hammersmith doctor is the latter, fortunatley.

Just keep remembering that these treatments HAVE worked on people before that will have gone through the same as you and not had the chemo work, so there's still lots of hope there. And seeing as this doctor seems to be a lot more interested in saving you rather than writing you off, maybe it's worth talking about trials and that other drug that begins with R (that I can't remember the name of !!) that someone else mentioned previously cause that's come up on a lot of sites I've looked at.

If it comes to people donating their cells to test for compatibility, just get Sam to give me a shout.


Sandra said...

That’s more like it!
Sounds a good cunning plan – with hooray emphasis on the eradicating bit.

I actually prefer professional types that look ‘a tad dishevelled’ rather than the immaculate very smart looking ones. Maybe because they look more like real people with real character, and they give me the feeling they must be so good they don’t need to dress to impress – or that they’ve been working longer hours because they care.

The other thing is... try not to worry too much about the little ones becoming troublesome (easier said than done, I know).

It’s absolutely normal to consider all the possibilities and risks involved in a new course of action. It’s good to talk about them (it actually makes very good reading with the raising of stakes, building of tension, etc) but worrying about them might not do anything much for your positive thinking thing.

It’ll be good. You’ll do great.
And... Hooray!

Anonymous said...

Good to hear some positive news.

Let me know if you need anyone to be tested for compatability as I'll be willing to join that queue.


Chemo-Man said...

Fantastic news!!!!! Hey, I think 35% is huge. It goes to show that if you don’t like the answer from your doctor (or consultant or whatever the hell you Brits call them) go find another. I like your spirit Richard, you are a true fighter.


Anonymous said...

Hi Ricardo
Great news, the answer to much prayer. We continue to pray and widen the circle all the time! Chris and Jane are eagerly waiting to find out when they can test for a stem cell match and Jo is also in the queue. I'm more than happy to test, provided you're not looking for brain cells!
Cheers and prayers
Peter <><

JT said...

Hey Rich,

Glad to hear you have a great doctor in your corner. Following up on earlier comments, tad dishevelled is how a doctor should look, preferably bearded and with poor handwriting for good measure.

Keep up the fight Rich, and as you are proving there are answers out there unfortunately sometimes it takes a bit of looking.

It would be good to know what database it is and how you can become part of it.Greetings from Fruit Towers.


Anonymous said...

We're friends of Pete & Jane (sister Jane!) - and just so you know - we're thinking of you - hope that you get the news you want on Monday - keep positive.
Gezza and Jools xx

Anonymous said...

Hi there Ricardo my baby brother.
How did you know that it was my secret ambition to throw away a few of my stem cells, sounds really cool to me, and am well up for it. No doubt Jane is as well, as will be our kids for sure.
We will start now training the little dudes to kick ass and floor any enemy by their inherited judo skills, and get ready to jump start you into the new Superhero Ricardo!! Hooray for Ricardo!!
Love you lots, Christine x x x x x x x See soon baby brudder x x