One haploidentical transplant experience (ongoing) – transplant forum – cancer forums – page 77 anoxic brain injury survivor stories

Well, my "vortex" port is designed with a lifespan of 200 sticks, or needle accesses. It seems that we are reaching the limit, as both the RN and I noted a distinctly unusual "access" about one month ago. There is a membrane inside the port, which allows the needle to pass and then self-seals when the needle is withdrawn. On that day, the needle pushed through with an odd sensation and little resistance. This is the first sign that the port is reaching the end of its life.

We are also at somewhat of a crossroads as far as the ECP treatment I am receiving. I am 15 months into a 24 month max therapy, and its benefits are being weighed. We cannot seem to drop beneath 25/5 milligrams (alternating days) of prednisone to control the GvHD, so we are exploring other possibilities.


One choice is treatment with the approved drug Ibrutinib, but that has potentially quite a few undesirable side-effects, especially considering my co-morbidities.

As to the Interleukin2, it is in clinical trial for chronic GvHD, but I may not qualify, due to too many prior clinical trials. reflex anoxic seizures in adults symptoms Doctor is checking on that. Interleukin2 itself is a cytokine, or a protein that is naturally expressed on some cell surfaces. It controls/moderates T-Cell activity, and it is the T-Cells that are the bane of my existence. ECP is intended to moderate the effects of T-Cells, so that they will not so aggressively attack the host (my) body.

The clinical trial I am in currently (KD025) is a completely different type of drug, but has the same intent. Somewhat wistfully, neither ECP nor KD025, either alone or in combination, are as effective as hoped for. hypoxic ischemic encephalopathy radiology So, we essentially open the window and have a look see for other possibilities.

Well, my "vortex" port is designed with a lifespan of 200 sticks, or needle accesses. It seems that we are reaching the limit, as both the RN and I noted a distinctly unusual "access" about one month ago. There is a membrane inside the port, which allows the needle to pass and then self-seals when the needle is withdrawn. On that day, the needle pushed through with an odd sensation and little resistance. This is the first sign that the port is reaching the end of its life.

We are also at somewhat of a crossroads as far as the ECP treatment I am receiving. I am 15 months into a 24 month max therapy, and its benefits are being weighed. We cannot seem to drop beneath 25/5 milligrams (alternating days) of prednisone to control the GvHD, so we are exploring other possibilities. One choice is treatment with the approved drug Ibrutinib, but that has potentially quite a few undesirable side-effects, especially considering my co-morbidities.

As to the Interleukin2, it is in clinical trial for chronic GvHD, but I may not qualify, due to too many prior clinical trials. Doctor is checking on that. Interleukin2 itself is a cytokine, or a protein that is naturally expressed on some cell surfaces. It controls/moderates T-Cell activity, and it is the T-Cells that are the bane of my existence. ECP is intended to moderate the effects of T-Cells, so that they will not so aggressively attack the host (my) body.

The clinical trial I am in currently (KD025) is a completely different type of drug, but has the same intent. Somewhat wistfully, neither ECP nor KD025, either alone or in combination, are as effective as hoped for. anoxic brain damage causes So, we essentially open the window and have a look see for other possibilities.

Another follow up day. Blood work is good, so no real thoughts on the chronic fatigue. The possible terminal ileitis will be scanned in the future, as the tenderness seems persistent. After the exam, doctor thought it best to discontinue the ECP treatment. I have not received treatment for about one month now, and the GvHD seems stable. hypoxia and anoxia difference As well, the marginal function of the port tipped the scales in favor of discontinuing. I will remain in the clinical trial for another month, and stay at the current level of prednisone. We may initiate a 1 mg/month taper in the future, hoping not to provoke an immune response.

I do not qualify for the Interleukin2 trial, as my kidneys are too compromised. I could receive it off-label, but insurance approval might be a problem. Doctor is considering either Ibrutinib – a BTK inhibitor which is approved for GvHD, Ruxolitinib – a JAK2 inhibitor, or the ever-popular Methotrexate. It was Albert Einstein who first said, "If we knew what we were doing, it wouldn’t be called research."

Monday, I had had my first scans in what, one or two years? Despite a lingering tenderness/soreness in the small intestine, there is no sign of malignancy. That does not mean that the battle is over. There is ample evidence of an enlarged prostate (BPH) impinging on my bladder, causing a thickening of the bladder walls. This I knew about from the prior scans, and is apparently mild and unchanged. At the least it is not worse. nanoxia deep silence 120mm pwm ultra quiet pc fan My skin is worse than doctor has observed on prior occasions, so more discussion there. The increasing crop of porokeratoses on my right leg is also a topic of discussion – the largest being about 3 centimeters. Doctor suggested a biopsy to determine the etiology (cause) of those growths, to ascertain the potential for treatment. There is a topical form of the immune suppressant drug Tacrolimus that might be tried.

The fight continues as far as taming my transplanted immune system. We are apparently ceasing the ECP treatment, as its intent was to reduce the need for steroids with an eye toward eliminating them. It has reduced, but not eliminated the need for steroids, despite any improvement attributed to it. As well, the trial drug seems to be producing mainly fatigue. So, what to do? Ibrutinib again came up, as did the new class of drugs known as Jak2 inhibitors. Much to talk about on the follow up appointment on the 24th.