Long overdue

Update long overdue ... so much happening ... so bad at keeping up with this ... sorry! In a nutshell ... Andrew's blood counts are all pretty good and no need for transfusions anymore YEAH!! ... and all clear to come out of his bubble. The immunosuppression drugs have given his liver the chance to recover and it is doing that - slowly. Unfortunately seems as though no drugs come without side effects etc. and he has had to deal with things like high blood pressure but they throw more drugs at the problems as they arise. Best news is that Andrew was really itching to get back to work and he was given the all clear to go back to work on a "do what you can" basis. He is now back at Harmonic parttime. Very tiring for him but he's pretty jazzed to be back into it and they have been really good to him about coming and going and doing what he can. Andrew is starting to slowly try to reduce his prednisone (taper off) and hoping that reducing the suppression of his donor/graft won't give him any more GVHD (graft vs host disease). I guess they are hoping that the graft becomes more "accepting" of the host over time. It's a bit of a balancing act I think. I'm just back from Canada where I completed Ironman Canada with my Team in training team ... we raised over $380,000 for the Leukemia/Lymphoma Society and that should fund a few researchers and their projects in the coming year. Harvest moon here and change of season (summer to fall/autumn) - a favorite time of year for us.

Trending in the right direction

Pleased to report that the liver counts are coming down. Blood counts are remaining stable so nothing much is on the horizon until the liver is back to normal. Just continue with the prednisone and cyclosporin. What then? Answer from the Dr is "we are in unchartered territory". I don't get much sleep but I do get a lot of programming and reading (technical manuals) done. Have also ventured out on my bike and to visit work etc. It's good not to have so many restrictions. 12 months off work .... too long. Really can't wait to get back to work.

Much better trend

The prednisone and gengraf are finally doing their job. Liver enzymes stopped skyrocketing up. Hope to see them trend down next week and for the first time in ages the red cells have held steady enough not to need the regular transfusion either. Happy with that. Doctor won't/can't make any predictions and often answers my questions with "well, you will be answering that one for us". Apart from the "wait and see" plan, the hope is to be able to start tapering off the prednisone soon and then .... the "wait and see" plan again. Another bone marrow biopsy is in the near future to give muscle to the "see" part.  Would really love to get back to work ... that's what I'm working towards.

GVHD

Still no chemo ... have GVHD (graft vs host disease) and have to get that under control first. Skin rash, dry/sore mouth and eyes and problems with the liver. On a hefty dose of prednisone and that has relieved the skin, mouth and eyes but the liver hasn't responded yet so have to add some more immunosuppressant drugs. Just hoping that suppressing the immune system won't stop the GVD (graft vs disease) fight that we hope kicked in when the chemo gave Grant's graft a chance to take hold. Frustrating but hanging in there. Still requiring regular red cell transfusions etc. Have been getting out and about a bit when the counts are up. - a day at the beach in Carmel and a visit to see the guys at work.

'Bout time for an update

Been busy celebrating birthdays. Celebrating good news too .. that the azecitidine (chemo drug) is battling the cancer. With the unexpected quick and good response to the drug they think it may be working to give the donor system a boost fighting the disease as well as knocking down the cancer itself. The bone marrow is looking a heck of a lot better than it did at Xmas time. The plan is that "when your on a good thing, stick to it" so they want to continue monthly cycles of chemo for a least a few more cycles and see what happens. We did delay the next round though because they want the neutrophil count to be recovered a bit before knocking it down again so have to wait until it reaches a certain theshold. Still requiring red blood topups but otherwise just the usual trips to Stanford and feeling pretty good overall.

Surprise!

Well I haven't had any appointments with the doctors yet but was very surprised to learn that the results of the BMB indicates that the cells in the bone marrow are almost all my donor (Grant's) cells. Reason why I am surprised is because they told me they thought the opposite would be the case. So until I have had word from the medical team .... I don't really know what is happening or what is happening next .... wonder if they do!
Feeling positive though.

Chemo Round 3 done!

Just completed round 3 (hoping it is the last one) of chemo and still awaiting results of bone marrow biopsy and to hear what the medicos have up their sleeve. Preliminary results of the BMB are encouraging ... they show a significant decrease in disease. It takes time to grow cells etc. to get chimerism results etc. apparently. Tried to do without the anti nausea drugs on day 1 ... bad move. Ordered it directly into the pic line before all else from then on in. Wonder drug.

Going to see what the BMB reveals

Another BMB scheduled ...(bone marrow biopsy)... not my favorite thing to do but I am very used to them now and they are not too bad. Dr. G says all will be revealed in the bone marrow and that will determine what to do and where to go next. The Bone Marrow Transplant team will decide the next steps ... maybe another round of chemo starting next week, maybe start looking into another donor infusion, will depend on the numbers (ie. number of blast cells, percentage of my cells versus my donors cells, .... how much disease etc.). Platelet count is up, WBC's and RBC's are down but I slipped out before they were read. Probably means a couple of units in the next day or two. Still have to keep using the mask etc. so won't make it to my friends/work mates wedding Saturday ... but will be thinking of you and hope you have a perfect day Cathy.

Finished the second round of chemo and have had no more in patient stays at Stanford.   I will be seeing my doctors this coming Monday to see what they want to do next.

Happy Easter to all

Andrew

Doctor Gotlieb is very happy!

It is not expcected to see evidence of response to the chem (azacididine) drug that they are using until the second cycle at the earliest but there is an indication (from lab results) that Andrew is responding after only one cycle. The idea is to use this treatment to stomp on the disease and get it under control enough to then try donor cells again from Andrew's brother. They will know what is really going on with the disease when they do a bone marrow biopsy and so the plan is to do another cycle of 7 days starting tomorrow. The blood counts will then go down again as a result of the chemo the following week but hopeful recover and then come up a bit towards the end of the month. If that happens, they will do a bone marrow biopsy at the end of April to see what is happening in the marrow and make decisions about how to proceed based on the results. The hematology team will consult with the Bone Marrow Transplant team to work out what to do and when. It was not a given that Andrew would respond to the chemo offered (he is the first with his particular disease and prior treatment to try this) so it is great to have an indication that it is probably doing what they hoped it would at this stage. Still neutropenic so confined to base but good news is always a boost to morale etc.

Signs of responding to the chemo

Andrew had a much better week this week. Outpatient all week and just for IV antibiotics, blood draws and transfusions. His platelet count is on the go (going up that is) which indicates that he is responding to the chemo. That's a real plus, it wasn't necessarily a given. We have an appointment with the hematologist on Monday and think he will be happy about that and probably order the next round on chemo. Thanks to everyone for their well wishes. Andrew always likes to receive the messages. He is still neutropenic (no neutrophils/white blood cells) so still the bubble boy - lots of reruns of Black Adder etc. So wet and wild here at the moment that we are all pretty much staying in doors.

Cycle

Andrew had to be admitted to Stanford again on Wednesday with fevers and a bit of a cough. He is hoping they will let him come home on IV antibiotics. Waiting to see.

Round One ... DONE!

Andrew is very happy to be home again. It really is not much fun in hospital even though they look after him very well at Stanford. He is also very pleased to have completed a cycle of the chemotherapy. He has three weeks without chemo before going back for round two. The chemo knocks the blood counts down further (not that there is anywhere for them to go as they are already rock bottom) but it means we go out to the clinic at Stanford over the next three weeks to do labs and transfusions as required. After round two and before round three they plan to do a bone marrow biopsy to see how it looks. Hoping the chemo is doing its stuff. Andrew is a first in many ways for this treatment but the doctors all say that they have never seen anyone with the degree of disease etc. that he has look anywhere near as good as he does! On Friday a new physician come in and had to ask us which one was the patient. He has also had a few short walks the last couple of day (gets a good burst of energy after what he fondly calls a few free pints at Friday happy hour).

In 'n Out

Back in hospital because fevers/blood counts not under control. No news really because they don't know what exactly is going on and what to do about it it seems. In the meantime Andrew has had plenty of IV antibiotics and fluids and transfusions (including platelets). Nausea under control with drugs too now which is a plus. All we know is that he will definitely be in until at least tomorrow. Usually they say until 24hrs without fever ... but that doesn't look like it is going to happen. All cultures taken so far have been negative. They want to do a nasal swab culture and due to past history of nose bleeds ... Andrew is resisting (understandably). Rash has cleared up - two thumbs up. Andrew showing amazing fortitude ... still smiling!

Hoping to go home

At the hospital waiting. Last night they took Andrew off IV antibiotics and changed him to new oral ones ... that's a good sign. Fever was low grade last night ... and rash is looking a little better. We're hopeful!

Watch and wait

.... still in hospital, still spiking fevers, having transfusions and antibiotics etc. Doctors deciding to take a watch and wait approach for now. Skin rash so something is happening ... just not sure what.

On hold - for now

Treatment is temporarily on hold for the moment. Andrew's temperature is up so he has been admitted to Stanford hospital again.

Starting today

Today is the first day of the first treatment with the new drugs. I will have seven days of chemo and then 21 days before the next round. It will be given at Stanford ITA (infusion treatment area) - injections. It is supposed to be well tolerated which is good news. Might be a long day because I probably need blood today. Feeling good and positive!

A note to family and friends

Friends, it's so good to be out of hospital. Had the Bone Marrow Biopsy and afraid the results are not very encouraging. It's all a little confusing because I think the medical team are also a bit confused or confounded by the turn of events. I tolerated the radiation really well, I engrafted really quickly and smoothly ... things were screaming along. When the blood counts continued to drop inspite of all this everyone was scratching their heads. BMB results from last week show a return of the disease and it is behaving quite aggressively. I have just met with a new doctor (hematologist) and this is the plan : try a course of drugs (low grade chemo - methyl somethings) over a period of time to try and "turn on" those genes that fight the cancer (ie knock the disease back down). If we are able to do that then we will try another donor infusion (a third transplant). Treatment consists of 7 days of chemo then three weeks off. Probably a couple of cycles at this stage. Hopefully then blood counts will come up but in the meantime I can have transfusions when needed. I'm sick of being poked so first thing is to get a pic line in for transfusions etc. So hang on folks, here we go. Will try to update blog (or get Penny to) a bit more often as we go.

Not according to plan

Just a quick update. I am writing this at Stanford. Andrew was admitted on Friday with fever and very low counts. Not sure what is going on. Counts are supposed to go up but they have been going down. A Bone Marrow Biopsy is scheduled for tomorrow to see what is causing this problem. Then to decide what to do next.

'bout time for an update

Been a tough spell for Andrew. Blood counts all very low. Transfusions today should help him feel a lot better. Bone marrow results mirror the blood lab results ... Andrew has engrafted very well (about 90% Grant's DNA). The thought is that Andrew's remaining anitbodies are rejecting the cells Grant's DNA is making - so they are going to try and "wake up" Grants t-cells at a faster rate (by reducing the dosage of  immunosuppression drugs). The hope is that this will get Grant's fighter cells (t-cells) to fighti back and dominate. Chances of GVHD (graft vs host disease) will increase so will be keeping a close eye on that. Andrew keeps telling them he feels really "giddy" ... he means "dizzy" ... but they define giddy as being deliriously happy ... just as well I am a good at interpreting when needed.
Very quiet out here at Stanford today, only a couple of patients up in the ITA unit. I love my Kindle on days like today ...  but miss the coffee.

C'mon Aussie, c'mon

Let's not talk about cricket ....
Actually, trying to encourage the Aussie team to fight back.
It's looking like Andrew's immune system is putting up a good fight and we want Grant's to fight back.
At yesterday's visit they couldn't deem much from the BMB results because they were inconclusive ... weren't able to harvest enough marrow due to scar tissue. They did take a small piece of bone and hoping to get some test results from that soon. Lab results however were not so encouraging. Once again, Andrew is very anemic so waiting for them to call to arrange a time to go back in for a top up. This is now a "trend" .. indicating that Andrew's antibodies are fighting the graft ... and even though it is a whacky immune system, it appears it is a mighty strong one. Platelet count also took a dive but nothing conclusive about that one until it shows a definite trend. Apart from the fatigue, Andrew is feeling good, doing some "fun" computer programming, drove the car for the first time in months, has a walk to the park most days and great appetite (with the 100 days up, was able to enjoy some very delicious homemade Xmas cookies, Xmas dinner with all the trimmings etc.)