So – I haven’t posted a while to give an update on how Phil is doing. I guess you can go with the old adage about no news is good news!
He had an appointment yesterday with Dr Casper (the Castlemans DR) and talked about the results of his CT from Thursday. All of his lymph nodes and spleen are just about a normal size except for 1 lymph node. So this is proof the experimental treatment is working! We asked about remission and Casper said that really there isn’t “remission” but just evidence the body is reacting favorably to the drugs. As far as the future and Castlemans, we really don’t know what that is. Since Phil is a one of a kind case, it’s unknown to us and to the experts. We expect that he will continue treatment monthly for now, and then at some point start to push that out and see where his body decides his threshold will be. We tried 5 weeks and it proved he wasn’t ready for that yet. Last week he was extremely run down and didn’t have any energy.
Phil has been off of dialysis since April and his kidneys are working at about 50%. This improves a few percents each visit and we hope it will continue. Dr Anderson doesn’t think there is any reason to think this won’t happen, but again, Phil has proved to be an anomaly and they just are not sure.
Phil has a goal of going back to work in April 2013… he works hard every day to regain his strength and stamina he used to have.
For now our plan is to enjoy what we have every day! We have no idea how long this will last, so we are not wasting any minute!
Thanks as always for all of your continued prayers!
Loved seeing this on my email today!!!! Hoping this is a start of a trend!
Hello Ms. Stevens and Mr. Stevens,
Seems like the platelets are continuing to increase – 73,000 today and the highest since August of 2011.
As I had hoped – the marrow exam and the associated genetic studies did not show any evidence of a blood disease or Castleman’s.
The megakaryocytes which are the “mother cells” so to speak that utlimately give rise to platelets – are slightly low.
Overall, it could still be a prolonged drug effect from allopurinol as the platelets have increased off the drug.
I think knowing we see nothing worrisome – we should just continue treatment and watch the counts. Please let me know if you have any questions or concerns.
Phil had an appt with the Hemotologist this last Thursday. Good news is the platelet count came up a bit more. They are going to go ahead & schedule his infusion of his chemo drug next week (Actemra). This will be the third one. We are really really hoping his labs start to show marked improvement soon. I don’t know how much more his kidneys can take of this.
Next weeks appts are normal dialysis M,W,F. Harborview on Tuesday to have an ultrasound on his arm so they can map all his veins and make a plan to install the fistula. Im sure that surgery will be coming up in the next couple of weeks. Wednesday is a date with the kidney dr. Lets see what words of wisdom he has to say. Its been a month since Phil has seen him. Thursday is the infusion.
Still planning on doing the bone marrow biopsy, and I think that will be done the week after next.. but it’s not on the schedule yet.
Thats the most recent update on the Castlemans.
Jordains truck is all fixed, needed a new starter relay, battery and some cables. Hoping thats it for now. Devin is going back to the Dr this week to hopefully get the OK to return to normal activity. Her headaches are gone so they should let her get back to sports again. That kid is lost without her sports!
Thats about it!
There are only a few changes in the last month with Phil and the Castlemans.
He has had two infusions of Actemra (tocilzumab) and he has not noticed too much of a change on how he feels. Some of the labs have improved a bit and some of the meds have been reduced or removed completely. So that is good I suppose. We are both a bit discouraged that he has not seen more visible or obvious improvement.
One thing that has come up is his platelet count has gone way down. So far in fact they refused to do the 3rd infusion yesterday. they don’t think that the infusion drug is the cause of such a drastic drop. The Hemotologist that is covering for Dr Casper while he is at his clinic in Uganda, has suggested that they do a Bone Marrow Biopsy. That is in the process of being scheduled so we should know in the next week or so when that will happen.
The other thing they will be doing is removing the direct line into his chest. They have been using that for his dialysis, but don’t like leaving it there as long as they have. So he will be going to Harborview in the next few weeks to have that removed and a permanent fistula put in his arm. That is an out patient surgery and they combine a vein and artery somehow (yuk!).
Other than that, we all are doing OK. Trying to take things a day at a time and find as much to be thankful for as we can. Phils mobility is limited due to the swelling from the edema that still has not gone down and probably wont until there is more recovery and less drugs. He tires easily so we try to keep things pretty low key at home, however he is bored stiff!!!! I have found a great website for his kidney diet and that has made meals a bit more enjoyable for him.
Jordain got her first truck! She is pretty excited! Now she is focusing on the big job search! Devin is working hard at school and trying to recover from a concussion she got during soccer.
All in all things are plugging along! Thanks to everybody as always for your thoughts, prayers and happy wishes! Love you all!!
Phil had his infusion of Actemra today. It is considered a type of Chemo, but does not carry the same side affects we all associate with Chemo. There are side affects and we will monitor for them as we go along. He will have infusions every 2 weeks for 3 months and then once a month for life. We wont know if it is going to work for at least a month. Until then, we continue with dialysis and hope that one day his kidneys can recover. If not, we will deal with that when it happens. Thanks so much for your prayers and good wishes! They all have been working and God has heard them all. There is proof in that! Love you all!
Kelly and Phil,
The pharmacists got back to me and said you can begin the
tocilizimab infusions any time. I provided them with orders for the first 6
doses – please work with Rachel to schedule your first infusion. While the
infusion center is open today, it is a SCCA holiday so you will not be able to
reach Rachel until tomorrow – I see no reason you can’t begin as soon as
possible, depending on your availability and that of the infusion suite.
This is the drug we have wanted – the drug the insurance company has denied 4 times! The drug company (Genentech) has approved the compationate benefits! WE GET IT FOR FREE!!!!!!!
It will take at least a month to know if it will work in treating the Castlemans and maybe longer to know if his kidneys will ever recover, but it is a HUGE first step!!!!!!
Thanks for all your prayers – they are working!!! Keep them coming!!!
Oh – and how cool is this – the Dr emailed us on Labor Day to tell us the good news!!!
Phil has been home for a week and going to Dialysis 3 times a week. Today was an appt with Seattle Cancer Care/Fred Hutch as part of the approval process for the drug trial.
The further we get into this, the more frustrated we become. Today they let us know that his eligibility may be in question because of his poor kidney function. They said the drug sponsor feels confident that he can do the treatment while on dialysis, but that his labs are not good enough…. my question – is if his labs were good, why would he be on dialysis??? It seems like Phils case is such a mystery. For one he is HIV negative and two he is the only one they know of that has had kidney failure to this extent.
I feel like I need to email/call/harass the doctors daily for any information. They all say the same thing. “let me check with so & so and get back to you” or “we are working with such and such and we will let you know”
I asked one of the assistants today – at what point do you stop saying that and he gets treatment? When he is dead??? She didn’t have too much to say, unfortunately I was venting my anger on somebody who not in a position to help.. but it felt good to vent either way.
I have requested a face to face appointment with Dr Casper and also emailed to an advocate to give me some insight. Hopefully once he is back in town we can meet with him and sit on him until we get some answers and a plan.
Keep up the prayers since it seems our battle has just started!