Friday September 11

Quick Summary:  I am responding well to the chemo (one cycle so far since the recurrence of the leukemia).  One measure of this is the absence of ‘blasts’ in my blood according to recent lab results.  Blasts are immature, abnormal white blood cells produced by the marrow that crowd out production of the good cells.  Next steps in my treatment will be determined by a bone marrow biopsy not yet scheduled but likely in the next week and a half.  In the meantime, I will continue to go into the clinic every 4 days or so getting labs taken and replenishments (red blood, platelets, etc.) as needed.  The chemo and other medications impact the target levels and it is standard to get these replenishments at this point in my treatment.

Moe’s Musings…Woke up today feeling strong and well rested.  WOW – I did not fully appreciate how depleted I was until actually feeling good again.  Yesterday (Thursday) had a clinic appointment and my lab tests showed both my magnesium and platelets were both crazy low.  Those were replenished intravenously making for a long clinic day but well worth it!  My prayers to those who have chronic fatigue or pain with no respite - God be with you.  Also many thanks to those who donate blood and platelets – I am your best customer these days.   Never do I hear ‘oh we don’t have that type blood to give you’ or ‘we’re fresh out of platelets’. 

My friend Ellen is due some credit for the rise in my blood counts as we recently enjoyed her gift of  ‘Moe’s Extra Hearty Blood Cell Strengthening Sauce’ (honest to goodness that’s the name she gave her sauce – a great name albeit with  a limited audience J)

Heading back to the clinic on Saturday – it seems I am going in about every 3 to 4 days.  They take multiple vials of blood (the ghouls) and check all sorts of levels.  Based on the story my levels tell them I’ll get some type of replenishment (red blood cells, etc.) – the levels also dictate my next visit…the lower the levels the more frequently I go in to get topped off.

A little more on blasts…One other thing they are looking for in my labs is ‘blasts’ in the blood.  These are abnormal, immature white blood cells that fill the marrow crowding out production of the good cells.  Presence of blasts in the blood is an indicator that leukemia is active.  The presence of blasts in my blood work about a month ago led to the bone marrow biopsy which confirmed the acute myloid leukemia has returned.

In the past few weeks we have been watching the presence of the blasts and they have been going down.  The last three labs showed no blasts at all.  This is great news per my cautious and conservative medical team.  The story this tells is that my leukemia is responding to the chemo. 

So what next…at some point in the next couple of weeks I will have another bone marrow biopsy to learn the status of my disease (sadly lack of blasts by itself does not equal lack of leukemia in the bone marrow).  This will determine the course of treatment – either another round of chemo or straight to the booster infusion of my original donor’s cells.  The cell infusion will strengthen my new immune system again fighting and eradicating any lingering leukemia or any that should surface in the future. 

My understanding is the original transplant worked in that it kept the disease from exploding when it presented itself again.  This is great news – the lousy news is the leukemia returned at all, an indicator it is pretty aggressive.

In other news…Today was the first Friday mass at St Michaels and it was wonderful to be able to attend.  The eight graders watch over the preschoolers at Mass and all us parents of eighth graders were reminded how amazing it is our kids are no longer those little kids being watched over themselves.  Off to dinner and then Jim and Emma head to the North Andover High School football game (go Knights).  

Monday September 7

Coming off a very nice Labor Day weekend. Emma, Jim and I spent the day in Gloucester yesterday with our great friends the D'Abates. Jim and glen took the boat and the girls drove to a waterfront restaurant where the boys docked and joined up for lunch. Kirsten, Emma and I toured glouster by car identifying several waterfront homes that met our criteria for a second residence.  We made our way to a lighthouse and long concrete pier/brake wall which we walked down passing artists and fishermen/women and other day trippers. Saturday had been extremely low we energy day for me. Days like that are inevitable but still so frustrating. I am weepy, cranky, tired- a real pleasure to be around.

I am in the clinic for a scheduled visit this morning.  My nurse today said low days are inevitable and they get worried if a patient does not bounce back in a day or so. Also my platelets were very low today and typically I do get tired when they are low.  In the clinic now getting the platelets.

I am on two chemo regimens (one infusion which was administered every day for seven days ending Tue 9/1) and a pill chemo I am taking daily.  My routine since my infusion chemo ended has been to come into the clinic every 3-4 days and get my labs drawn.  One side effect of the chemo is low blood counts so I frequently get replenishment of platelets and red blood.  

Still neutropenic meaning I have very low white blood cells including low neutrofils (disease fighting white blood cells). So I am wearing the mask / gloves in indoor crowded places and back to a restricted diet.

When the leukemia came back the plan was to do one to two cycles of the infusion chemo (taken intravenously at the clinic) while continuously talking the pills.  The infusion is 3 weeks apart so, if we do a second round it would start on or about 9/23.

The next step is the DLI (donor lymphocyte infusion) which is a booster of cells from my original donor to improve the efficacy of the original transplant again helping my own immune system fight any remaining leukemia. So the strategy is twofold targeted chemo to kill the leukemia cells (the type of chemo I am taking also acts as an immune accelerator) and an infusion of new donor cells (a mini transplant -my words not the docs) to boost my immune system and continue it's frontal assault on the leukemia

The determination of which will be the next step (round 2 of chemo or straight to DLI) will be determined within the next week or so. It is too early to say the chemo is working but there are no signs it is not (how's that for hedging my bets).  There are signs I am responding to the chemo which is very encouraging.

Anyway thanks for slogging through this. This is what happens when I have a high energy morning and I am in the clinic by myself.

Oh and before I go the Joseph update. He is enjoying Bowdoin and had a visit from his best pal Megan this weekend   Jim Emma and I hope to get there soon. Well all done at the clinic so off to home.

Monday 8/31/15

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.

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

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

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

• 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

Happy 4th and Happy 100 days!!

We had a wonderful weekend celebrating 23 years of marriage (Jim and I tied the knot on July 4th 23 years ago), our nations independence AND my 100 days post transplant!   In specific terms, I am able to get back to a more normal diet (I've been fairly restricted and never thought I would miss salads this much) and can get out a bit more without the Haz Mat getup of mask and gloves (though I will still wear in crowded places or the hospital).  I've also begun tapering off the immune suppressant medications.  My feet and ankles get pretty swollen and 'tingly' - going down on the medications may help alleviate these symptoms.  Also there are complications that are most likely to happen in the first 100 days - getting this far without major complications/setbacks is a huge gift.

Next up for me is getting my central line removed.  This line is used for medications, fluids and blood draws.  The only medication I am on via the line at this point is magnesium.  If I can tolerate the magnesium as a pill (apparently this can be hard on the gut for some) then I will likely get the line removed in the near future.  I've been incredibly fortunate the line has not become infected or been problematic in any way.

Hope you all had an incredible and relaxing 4th of July weekend.

Thanks for checking in!

Love,

Maureen