Back to the clinic today for my infusion chemotherapy. This runs 7 days back to back and so far no debilitating side effects which is awesome. I remain home traveling into the clinic daily for the chemo and red blood/platelets as needed (I've needed one infusion of each thus far). Just today I became neutropenic meaning my infection fighting white blood cells (neutrophils) are below the optimal level making it more difficult for me to fight off infections. This was expected as the chemo is reducing my blood counts in general. So I am back to my 'robbing the bank' look (mask and gloves), a restricted diet and some restrictions on activities. The counts should recover within a week or two. In the meantime, the low neutrophils does not impact the way I feel - still have good energy and appetite etc. for which I am so grateful. And even though a good chunk of my day is at the clinic, it is such a blessing to be home every night.
One frustration is my insurance companies denial of my pill chemotherapy. After almost a week of appeals, it looks like they will approve the pill which I hope to start within the next couple of days. Hopefully this will not compromise my treatment.
Emma continues to cram in last minute summer fun and I thank the people getting her from point A to Point B. She starts school this week with two half days.
Joseph is doing well at Bowdoin and starts classes Thursday. We sent him a care package the end of last week which included cookies (from Emma), some photos, and his high school AP Calculus notebooks. He requested the notebooks - the cookies are all me...the notebooks definitely Jim. Thank heavens they did not fall victim to my manic cleaning out of 'all things last year'
Well that is it for now - thanks so much for checking in and have a wonderful week.
Monday, August 31, 2015
Thursday, August 27, 2015
Thursday August 27
Well this relapse has certainly thrown me for a loop. It is taking a bit to shake off the shock and disappointment and remember all that is good and hopeful.
Here is the latest and greatest on the kids...Jim and I had a lovely day at Bowdoin with Joseph. We took care of some logistics, had a nice tour of the campus, Joe got reacquainted with the track coach and he really likes his roommates. He is off to a great start. He started off with a trip that is part of the orientation - it involves Kayaking, canoeing, and spending a quite uncomfortable but very fun couple of nights under a tarp sleeping on the ground. All good but the Staudt house is a bit too quiet.
Emma is having a busy last couple weeks of summer - she is getting in a fair amount of friend time which includes a week at volleyball camp. With me going to the clinic daily she has also been going from friend's house to friend's house and having a great time. Once again we are amazingly blessed with great friends.
I ended up starting chemo this week (grateful to my medical team for starting after the Joseph drop off). The port was placed today. This was followed by the chemo infusion; pretty quick and straightforward...no side effects or bad reactions. This particular chemo regimen is not nearly as toxic as my last and most people do quite well. Truly I feel just as good as I've felt for the last several weeks. Side effects may come over the course of the next couple weeks but so far so good. My chest where the port was placed is an ouch fest but this will pass.
One big question on all our minds is my overall prognosis - here is how things were explained to me. This treatment has worked on others in my situation. A relapse of leukemia relatively soon after the transplant is concerning but a realistic outcome with the chemo coupled with the boost of donor cells is to get me back to remission. I have faith until further notified (thanks Arline for the saying and hope I got it right). I don't know when we'll have a measurement of whether the treatment is working. Ultimately it will be the next bone marrow biopsy that gives us a definitive answer. I'll keep you posted on any directionally good news and also when the next biopsy is scheduled - we are probably at least 2 + months out. In the meantime my posts may consist of updates on my appetite, good books I am reading and how the kids and Jim are doing. Bear with me!!
Thanks for checking in
Here is the latest and greatest on the kids...Jim and I had a lovely day at Bowdoin with Joseph. We took care of some logistics, had a nice tour of the campus, Joe got reacquainted with the track coach and he really likes his roommates. He is off to a great start. He started off with a trip that is part of the orientation - it involves Kayaking, canoeing, and spending a quite uncomfortable but very fun couple of nights under a tarp sleeping on the ground. All good but the Staudt house is a bit too quiet.
Emma is having a busy last couple weeks of summer - she is getting in a fair amount of friend time which includes a week at volleyball camp. With me going to the clinic daily she has also been going from friend's house to friend's house and having a great time. Once again we are amazingly blessed with great friends.
I ended up starting chemo this week (grateful to my medical team for starting after the Joseph drop off). The port was placed today. This was followed by the chemo infusion; pretty quick and straightforward...no side effects or bad reactions. This particular chemo regimen is not nearly as toxic as my last and most people do quite well. Truly I feel just as good as I've felt for the last several weeks. Side effects may come over the course of the next couple weeks but so far so good. My chest where the port was placed is an ouch fest but this will pass.
One big question on all our minds is my overall prognosis - here is how things were explained to me. This treatment has worked on others in my situation. A relapse of leukemia relatively soon after the transplant is concerning but a realistic outcome with the chemo coupled with the boost of donor cells is to get me back to remission. I have faith until further notified (thanks Arline for the saying and hope I got it right). I don't know when we'll have a measurement of whether the treatment is working. Ultimately it will be the next bone marrow biopsy that gives us a definitive answer. I'll keep you posted on any directionally good news and also when the next biopsy is scheduled - we are probably at least 2 + months out. In the meantime my posts may consist of updates on my appetite, good books I am reading and how the kids and Jim are doing. Bear with me!!
Thanks for checking in
Monday, August 24, 2015
Monday Update 8/24
Jim and I were in the clinic today and I have a sketch for my treatment plan..The most likely scenario is I will start chemo Monday. It will be outpatient (can I get an AMEN) with two types of chemo - one taken intravenously and one as a pill. The intravenous chemo will run 7 days which means I'll be going to the clinic 7 days in a row for the one hour infusion. After the 7 days of the intravenous chemo, I will be in the clinic once a week for a check up. Simultaneously I will be taking chemo via a pill for a total of 21 days (7 of which overlap with the infused chemo).
The plan is for two cycles of this chemo regimen.
After the two rounds of chemo the plan is for me to get a booster infusion of the original donors cells. These donor cells will help boost my immune system (again!) to fight off any stubburn leukemia cells. They will go back to the original donor and procure those cells closer to the date they will be needed.
There will be more to tell later in the week - for now doing the last minute packing to get Joseph off to school! We leave for Bowdoin in the AM!!
More later - love Maureen
The plan is for two cycles of this chemo regimen.
After the two rounds of chemo the plan is for me to get a booster infusion of the original donors cells. These donor cells will help boost my immune system (again!) to fight off any stubburn leukemia cells. They will go back to the original donor and procure those cells closer to the date they will be needed.
There will be more to tell later in the week - for now doing the last minute packing to get Joseph off to school! We leave for Bowdoin in the AM!!
More later - love Maureen
Saturday, August 22, 2015
Weekend Update 8/22
Hard to believe it has been so long since my last post! The summer has been wonderful. We've been to the beach, out on the boat, and spent a fair amount of time shopping and preparing for 'back to school and off to college'. We had several of our Ohio cousins here for a week which was amazingly fun. They went tubing, toured Boston, spent some time in York at the beach/arcade/Golden Rod candy shop and a day in Westport with my cousin Joe, Aunt Debbie and Joe's kids. The day and the sea cooperated and we had a beautiful time with the kids body surfing and the adults sitting under umbrellas - now that is a beach day.
Over the summer my visits to the clinic have been pretty regular and uneventful - until last week. My white counts and platelets were dropping slightly which was not a definative cause for concern. At the time I had a slight cold which could cause the drop. However they decided to do a Bone Marrow Biopsy to make sure the leukemia had not come back and sadly we have found that it has. This is pretty new news and Jim and I will go in Monday to learn the game plan. Basically it will be some form of boosting my donor stem cells and attacking the leukemia with chemo. In a way they overlap because boosting my donor cells should give more power within my own body to attack the leukemia.
Here is a little more detail from a non-medical person still in a bit of shock and maybe not fully translating what the doctor said
Over the summer my visits to the clinic have been pretty regular and uneventful - until last week. My white counts and platelets were dropping slightly which was not a definative cause for concern. At the time I had a slight cold which could cause the drop. However they decided to do a Bone Marrow Biopsy to make sure the leukemia had not come back and sadly we have found that it has. This is pretty new news and Jim and I will go in Monday to learn the game plan. Basically it will be some form of boosting my donor stem cells and attacking the leukemia with chemo. In a way they overlap because boosting my donor cells should give more power within my own body to attack the leukemia.
Here is a little more detail from a non-medical person still in a bit of shock and maybe not fully translating what the doctor said
- The leukemia is in my marrow but not yet in my blood stream. This could change quickly as AML typically presents and develops rapidly.
- There is a possibility the leukemia will not 'explode' in terms of growth as my donor immune system has been fighting it's progression.
- From the beginning I've known I have a particularly aggressive form of leukemia and the fact that it has come back so soon after the transplant bears this out,
- The transplant engraphment is a gradual process. Right now I am 50% donor cells 50% me. At one point the donor cells were higher and my doctor is thinking the leukemia may be the cause of reducing that percentage of donor cells. Of the 50% that is me, about 20% are leukemia cells.
- When I went into the hospital in December of last year my marrow was 100% leukemia cells crowding out everything else, I am at a much better starting point compared to that.
The goal is getting me back to remission which is realistic and the treatment outlined has a history of success with other patients. I should know more Monday re: treatment plan and maybe disease progression.
In the meantime I still feel good - decent energy and appetite etc. - for which I am very grateful.
The kids know and are doing okay. Joe is off to school on Tuesday and as of now I'll be able to take him with Jim which is awesome.
That's it for now - keep praying my good and wonderful friends. Thanks for checking in
Love, Maureen
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