Friday, July 20, 2007

Waiting for the Other Shoe to Drop

Lucia is coming to the end of her treatment for T-cell Acute Lymphoblastic Leukaemia. She has just had her end-of-treatment briefing from our consultant John. I will quote her …

  • I'll have follow up clinic every 6 weeks for the first 18 months.
  • The first 18 months are the most critical for relapse.
  • I may need blood transfusions for up to 6 months after finishing.
  • My bone marrow will take up to 6 months to recover.
  • So will my energy.
  • My immune system will be at 90% after 3-6 months and 100% after 12 months.
  • If I relapse I will go over to the christie, get a new consulant and will have to have a BMT. (Bone marrow transplant).
  • The further out I relapse the better. (The first 6 months have the bleakest outlook).
  • T-cell ALL can be v. agressive when it relapses and the relapse protocol would be a whole different ball game.
  • BUT, I have a 75% (probably higher) chance of being cured this time around.
  • Follow up will be at RMCH.
  • I have a higher risk of heart disease, skin and lung cancer than most but keeping out of the sun (which I do) not smoking (duh) and keeping healthy brings my risks down to a normal level.
  • When I'm pregnant I will have to have my heart checked and be followed more closely to make sure there's no strain on it. Thanks to the doxorubicin chemo I had.

Depressing. Another 2 ½ years at least … how can I tell Nanda this?

I hate this 75-80% - it means one in four or five will relapse. So the medics are trying to keep our morale up but the odds are not particularly good. Relapse – another two, three, four years … the search for a donor who may well, in our case, have to be black and of which there are not many (please visit and support the African Caribbean Leukaemia Trust), and therefore a much lower chance of survival.

How can I tell Nanda this?

P.S. Lucia has just posted several updates so visit.

P.P.S. I´ve stolen the title to this post from Rob and Lauren whose son Fergus has just come off treatment. In a previous post I mistakenly thought Lucia had come off treatment but it is imminent – her recent experiences show us we cannot rest on our laurels during the second year of treatment.

6 comments:

Lucia said...

nope, but I am still surpirsing myself about how positive I'm actually feeling. Part of me now feels like, why waste time worrying about what could happen. It may never and even if it does I can't change it.

Rob said...

Angus, you said, "Another 2 ½ years at least … how can I tell Nanda this?"

Does this mean they will have to stay in England that whole time? It seems to me that after Kezia's treatment (proper)is over she should be able to do follow-ups from home. I mean, we haven't had our first off-treatment clinic visit yet, but I assume it will mostly be a simple blood draw and a cursory physical exam. Are there doctors locally (on the island) who could do that and transmit the data to Kezia's oncology team in England?

Anonymous said...

I think the protocols here and the UK are very similar as we are part of the UK ALL trial. I take Leonies blood on a Monday and deliver it to a local hospital. I ring in for the results in the afternoon. On a Tuesday the consultant or his registrar phones me for a chat and on the basis of the blood results I am advised on the doses of 6mp and methotrexate for the following 7 days. We repeat this for three weeks and then attend the hospital the week the dex starts for an exam and another chat. This works pretty well and reduces the hosptal visits to once amonth exept in month one of each cycle where there is an added lumber puncture. I now know the dosage before the doctor rings as it never varies, over a neutrophile count of .75 you take 100% of the dosage for your body mass (70mg for her). Between .5 and .75 you take 50% and under .5 you are off for a week. The day that the doctor phones I put all the tablets for the week into one of those weekly tablet boxes usually used by old people to remember morning, afternoon etc for each day and then no more fiddling with bottles for another week. Hope you can get that number of visits reduced,
Rosie

Angus said...

Thanks to all for the feedback

From what Lucia says in her comment on the other post it seems that 2nd year of treatment at RMCH and your hospital Rosie are some what different. Lucia - are your weekly visits in Blackpool or to the RMCH? In Nanda and Kezia's case I suspect they feel that as the RMCH is only 14 miles away they may as well go there as to the local hospital for blood tests + there may be some feeling about language difficulties.

Rob - as to th 1 1/2 years of observation. I've just checked with our doctor here at work (a Cuban) and they can do the full blood analysis but not marrow (hopefully not necessary) so it may be a case of convincing the hospital in the UK. Obviously, it would be advantageous in some respects for them to stay in the UK (e.g. education) but I know Nanda wants to come home and it would to be all together. We'll see - there's plenty of time to make decisions.

Out of curiosity what is Fergus' follow-up regime?

Rob said...

Our protocol says, "Patients are followed monthly for 1 year, every 2 months for 1 year, every 3 months for 1 year, every 6 months for 1 year, and then every 6-12 months for 1 year."

Though we have not had our first post-treatment visit yet (it's day after tomorrow), I suspect it's pretty simple stuff: simple blood draw (finger stick, I think, after his port comes out), brief exam, questions and answers. Simple stuff, that is, unless anything looks suspicious.

He'll also be taking an anti-fungal drug for six months as a hedge against pneumocystis pneumonia.

Angus said...

Lucia - do you have to continue with cotrimoxazole?