I waited all afternoon for the call from my consultant. I dont remember being so nervous for a peice of news since this saga started on 17th Dec. By 6:30 I had assumed the clinic would have finished and that they had not managed to complete my tests in the lab, in the back of my mind hand I was worried they were double checking a bad finding.
At last the mobile rang, it was my doc, and I'll always thank him for this, he started: "Martin, its excelent news!". No leukemic blast cells were seen in the marrow, and there were "text book" signs of retoximab interfering with the blast maturing pathway, which is believed to be the cause of retoximab induced neutropenia. So while I am still neutropenic for now, it is most likely not caused by a relapse.
I am so relieved you would not believe. There is a very high incidence of relapse for Burkits Leukemia and you would expect it expecially within a few months of remission. So the last week has been close to unbearable and I have definitely become closer to my nemesis again. I am now on GCF injections again (prescribed by doc but self administered, I still had some left!). The neutropenia should pass in time so I just need to be careful or I will be back on the ward again with an infection (no take-aways, bah!).
The chances of Retoximab-Neutropenia is about 1 in 30, so combined with having one of the rarest leukemia's (c. 1 in 1,000,000) I am as always proving to be as awkward as ever!
Wednesday 27 May 2009
Tuesday 26 May 2009
More Tests
Blood test today at 9:30. Then waited until 11:30 chatting to fellow patients until I was called for the consultation. It showed my neutraphils have dropped again from last week, from 0.7 to 0.3. So I am now officially back at neutrapenic. This is scarey stuff as it may imply relapse, although on the good side is that all my other blood results are good, and that one of my chemo drugs, Retoximab (aka rat-flu), may have caused the neutrapenia as this has been seen with some other patients. My consultant offered me a bone marrow biopsy immediately, or to come back later. I opted to go ahead, so thats now done already. We are hoping the biopsy shows nothing bad in the marrow. In the meantime I now need to keep away from infection or I'll be back in the ward anyway! Please please be the Retoximab, I'll let you know when I do.
Time for an update
Erm, ok, sorry. So its been a while. I had wondered whether I was going to continue this blog. I was not sure what to write anymore, the thing is that mostly things now happen at a slower pace to the time in hospital. Daily updates just didn't seem relevent anymore. But it has been almost 2 months since I last wrote anything, and on reflection it does seem like a fair bit has happened or changed since and I did not mean to leave it that long. Thanks those who have sent me messages of encouragement, and those who requested blog updates, i think you must be crazier than me but here we go anyway. So I'll try to catch up later but for now jump to the present.
Physically I am improving really well on the outside. The hickman line came out in April with no hitches, and all my hair has been growing back. I have not been allowed back in the water, even the swimming pool yet, this is mostly because of infection risk since my immune system is still very much compromised. So my rehab excercise plan has changed from being swimming based to walking, jogging and a bit on an old rowing machine.
I read Lance Armstrong's book in hospital I noted that he found the followup period far harder than his time in hospital. I remember thinking that sounded about right. Emotionally this period has been very challenging. It is very hard if not impossible not to get paranoid each time I get an unexpected headache, or just start feeling more tired in the mornings than the week before.
I am now having monthly visits and blood tests at the hospital. Unfortunately the last test, which was last tuesday, has thrown me a curve ball as it was not quite bang on. My neutraphils have dropped since the last test 4 weeks before to 0.7, this is below normal and borderline neutrapenic. This could be caused by infection, but more worrying by onset of a relapse. This was followed up by a microscope screening the next day which did not show any bad cells. Thats good but I am not out of the woods yet. Now I just have to wait for a retest, which is due today.
So not a good week, its been paranoia central! despite that I am still positive and hoping for good news today.
I'll follow this up soon - promise :)
Physically I am improving really well on the outside. The hickman line came out in April with no hitches, and all my hair has been growing back. I have not been allowed back in the water, even the swimming pool yet, this is mostly because of infection risk since my immune system is still very much compromised. So my rehab excercise plan has changed from being swimming based to walking, jogging and a bit on an old rowing machine.
I read Lance Armstrong's book in hospital I noted that he found the followup period far harder than his time in hospital. I remember thinking that sounded about right. Emotionally this period has been very challenging. It is very hard if not impossible not to get paranoid each time I get an unexpected headache, or just start feeling more tired in the mornings than the week before.
I am now having monthly visits and blood tests at the hospital. Unfortunately the last test, which was last tuesday, has thrown me a curve ball as it was not quite bang on. My neutraphils have dropped since the last test 4 weeks before to 0.7, this is below normal and borderline neutrapenic. This could be caused by infection, but more worrying by onset of a relapse. This was followed up by a microscope screening the next day which did not show any bad cells. Thats good but I am not out of the woods yet. Now I just have to wait for a retest, which is due today.
So not a good week, its been paranoia central! despite that I am still positive and hoping for good news today.
I'll follow this up soon - promise :)
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