Fourth cycle update

Again a slightly longer break between posts than I would have liked but the reason is that I've been quite unwell and motivation seems to be a problem.
Day 6 was particularly hard, I was curled up in bed nearly all day with stomach cramps, diarrhea and nausea. The following days have been only slightly better, but I have managed to get out of bed and pretend to live a normal life. I hate spending extra time in bed, they are wasted days no matter how comfy the bed may be. Last night I even vomited, just the second time ever from chemo.

My fatigue levels, cough and dyspnea have slowly worsened as my dose of prednisone has been reduced. Late last week I spent four hours re-reading my blog from day one and a pattern emerged.
Particularly in 2009 when BOOP first took hold but was un-treated and undiagnosed by the specialists. Through out that year I complained of a persistent cough, low grade fevers, a loss of appetite, chills and sweats.
I had several CT scans that year that indicated that I had no active lymphoma, so you'd have to assume these symptoms were related to a lung condition. I made that suggestion to my doctors in June of that year but it was ignored.

I once again have these symptoms coincidentally appear now that my steroid dose has been reduced, and once again the specialists aren't reading their notes and are suggesting it's linked to lymphoma.
In 2009 I self treated with prednisone and got a complete response in a matter of days. However I was not allowed to continue the treatment and my doctors suggested that if I had lymphoma then steroids would also give a similar response. I couldn't win. A "wait and see" approach was taken and as a result I developed lung fibrosis from the untreated pneumonitis.(BOOP finally being diagnosed in late 2009 and steroids being prescribed). This lung damage now precludes me from having an allogeneic stem cell transplant. Effectively burning the last curative HL treatment option available at the time.

Last year I was told that I would be on prednisone for the rest of my life because there were no other means of treating the lung inflammation behind the now diagnosed BOOP/COP.
I had done a lot of research and came up with the option of using the antibiotic Erythromycin which has an anti-inflammatory side effect. An obscure medical paper from Japan outlined the case of a patient treated with 600mg a day that resulted in a complete response.

My doctors agreed I could try it as it couldn't do any harm. However just one week after starting I was struck down with the potentially fatal Nocardia infection and my medication was stopped after being hospitalised and put on high dose IV antibiotics. We never restarted the experiment. In fact despite having two bouts of pneumonia in a year I have not seen a single respiratory specialist since being discharged nearly twelve months ago, even though I almost begged the head of the respiratory dept at Wellington hospital to be given someone to monitor my lung disease.

So in spite of the fact that everyone thinks all my lung problems are related to my lymphoma (despite all symptoms disappearing when treated with steroids last time) I have now taken control of my own treatment. As of last Saturday I have started myself on 600mg of Erythromycin daily, taken as 3x 200mg doses. I've informed my GP so he has it on record for safety's sake and can record the results.
So far my energy levels are improving, my cough less productive and fevers are not spiking so high.

But it is early days yet and I need to get over these Adcetris side effects before a clearer picture emerges as a lot of the side effects are the same and just cloud the results.

I showed my GP the non-healing lesion on my elbow again four weeks post surgery. He said "bugger". We read the biopsy and it said something about necrotising skin cells (not fasciitis). It really wasn't much help at all, so he took a swab to see exactly what it was that was growing in the wound that was stopping skin growth.

That's enough for one post, lots more to add but those with short attention spans may well be asleep by now!  ;)