Weekend Update - Friday 10/23

Happy Fall - what a gift this time of year is.  The air is crisp, the changing leaves are beautiful, the Boston in-bound/out-bound traffic is full of happy drivers....well...the air is crisp anyway.

Things have been busy this past week.  My Mom and sister Kate had overlapping visits with my sister leaving today (Friday).  They have both been incredibly helpful.  This past month, Jim, my Mom or Kate were with me during clinic visits which continue to be filled with biopsies (skin and bone marrow), chemo (starting and stopping), symptom analysis, and discussion of future plans.

The bone marrow biopsy done last week shows no leukemia in my system (same findings as the marrow done two weeks prior).  My marrow also contains very few cells which means it is not terribly productive in its output of red cells, white cells and platelets (the marrow cells being the starting point for production of all of these).  Thus I am still in the clinic every one to two days getting replenishments of blood and/or platelets.

A big change in the last two weeks - the cells that are in my marrow are mostly donor cells.  Basically the donor cells from my spring transplant are fighting back for dominance of my marrow which is awesome.  The nasty rash I have is a manifestation of the donor cells being active which is a very good thing.

The rash started after a couple days of chemo which acts as an immune accelerant.  While it is a good thing the donor cells are again hard at work, my medical team is cautious about jump starting them even further with more chemo so they stopped the infusions for now.  The rash is extremely uncomfortable but is still basically a good sign of the efficacy of my donor cells; amplifying the cells further, however, could result in graft vs. host consequences considerably more dangerous than my rash.

Similarly an infusion of donor cells at this time would amplify the donor cells and the timing may not be right.  Basically we want the donor cells to take over at a pace that is safe - too slow and the leukemia can come back - too fast and we could have graft vs host at a dangerous level.

In addition since I am producing a scant amount of white blood cells (which include the disease fighting cells) I remain severely neutropenic or prone to infection.  Keeping myself pretty home bound when not in the clinic as I could get in big trouble if I am exposed to a virus.

It is all a bit confusing and even if I am not explaining it well in the blog, I promise you I trust my medical team and do have a good understanding of what is going on.

So we are again in a wait and see phase - ultimately a donor cell infusion still looks likely but the timing is uncertain.

In the meantime I am focusing on the amazing news of no leukemia and some recent studies showing the effectiveness of my treatment regimen for long term health.  I am a lucky neutropenic, marrow production challenged, rash covered, leukemia free gal here to tell my story.  Amazing.

Have a great weekend

Thanks for checking in

Love Maureen

weekend update Friday 10/16 - Sun 10/18

My Mom and I were joined by my sister Kate this past Saturday. We've spent most of our visiting time in the clinic as I am getting chemo daily and platelets either daily or every other day.  They have been great company and we spent our Saturday afternoon watching college football. Thank goodness no-one left the room during the final seconds of the Michigan state/Michigan game. What a finish. The Ohio state/Penn state game was too late for all of us though mom and Kate lasted until half time.

Finishing up my Sunday clinic visit shortly with the chemo done, platelets finished and miroccrofungin (an antifungal) currently running.  Getting an ekg as well since one of my new medications can cause my heart to tap dance. Some changes going on with my rash spreading, some chills and mouth sores. All tie  to either my compromised immune system or graft vs. Host. Nothing bad (well not Bad bad)  Will just need to power through this part of my treatment and lay low until things improve.  Starting on a stronger antiviral medication and back on an antifungal medication as well.

Everything else is good. My cousin and her husband are in town seeing their niece row the head of the Charles (her Yale alumni team took 2nd and won   silver). They are coming to see us this afternoon which will be great. Jim,Emma and Joseph are all good.

Thanks for checking in.

Love Maureen

  

Wednesday 10/14/15

First of all Happy Birthday to my Mom!!  We celebrated her 80th birthday yesterday with a small party at casa de Staudt - we will take a rain-check on a true bash but it was so nice celebrating with Mom in person here.

Jim, my Mom and I had a status meeting with Dr. Avigan today (he is my oncologist and an amazing person and physician).  When I was admitted last December he led the multi-person team who worked a miracle beginning the exceptionally difficult process of getting me to remission.  I was again reminded of how fortunate I am to be here telling my story and to keep making forward progress.  I was in BAD shape back in December of 2014.  Dr. Avigan saved my life.

So back to the status meeting...our end goal with my treatment is to get me into a durable remission and get my marrow producing healthy blood cells.  Right now there is no sign of leukemia in my system (YEAH!!).  Yet it won't really be a durable and long lasting remission until my marrow is fully engrafted with the healthy donor stem cells which will enable my marrow to produce sufficient quantities of healthy white blood cells, platelets and red blood cells (eliminating the need for constant transfusions of platelets and red blood cells).  Also, until the donor stem cells become the only cells producing blood in my marrow, there is a risk my original stem cells will again produce leukemia cells.  This is what happened when the leukemia recurred in August.

To decide several aspects of my next phase of treatment, we need some more diagnostics starting with another bone marrow biopsy (yes, another one) done today to see what has changed in my marrow over the last two weeks.  Also we need to monitor this lovely rash I have that is tied to graft vs. host disease (GVH like mine is a good thing I'm told).

Dr. Avigan said any scenario begins with another round of outpatient chemo like the one I received in late August.  The chemo will attack any remaining leukemia cells (while no leukemia was present in the bone marrow biopsy two weeks ago, leukemia is dynamic and sadly could have developed since that biopsy) and provide conditioning needed prior to the infusion. The chemo regimen is scheduled to start this Friday 10/16.  It will consist of a 7 day infusion of Azocytidine along with a pill medication taken at home called Neltrexone.  These are both medications that target leukemia cells and act as immune accelerants.

The chemo will likely be followed by an infusion of the donor cells.   The infusion will again introduce healthy cells from my donor.  It will either be an infusion of T cells (mature white blood cells) called a DLI or a 'boost' of stem cells which engraft to my marrow and produce healthy blood cells.

One interesting tidbit Dr. Avigan shared is he was 'shocked' when the marrow showed no sign of leukemia after just one round of chemo.  He said generally in cases like mine the best he sees is a reduction in the leukemia.  He cautioned leukemia is dynamic and sneaky (okay sneaky is my word) so we may see some leukemia in the biopsy taken today.  If we do we have a plan for that but for now positive thoughts!!

Thanks for checking in and more details once I have the results of the latest biopsy.

Love, Maureen

weekend update 10/09-10/12

Happy Columbus Day weekend.  We had a great weekend celebrating both Joseph and grandma Redmond"s birthday. Joe arrived home on Friday and his first entry into north Andover felt very"weird" after being gone over a month. He's had a fun weekend catching up with family and friends.  Today is beautiful and we hope to get in a nice walk to enjoy the summer temperature on this fall day.

My Mom and I are back at the clinic today. I've been going in every 2 days to get red blood and/or platelets. It seems my marrow is not producing at the level my body needs.  This could be due to a very slow recovery from the chemo ( which suppresses marrow production), graft v host of the  marrow or leukemia (spoiler alert it is not leukemia). Incredibly delighted to report we've ruled out leukemia as the bone marrow biopsy shows no signs of leukemia. Amazing and an answer to our prayers.

We are still going towards an infusion of cells from my original donor.  This will help boost the original transplant with the end goal being an entirely new immune system for me. We had hoped for this with the original transplant back in March.   However my original, compromised immune system remained active along side my donor system. Sadly my marrow (part me part donor) again began producing leukemia. Another round of chemo got me back to remission and this boost should help my new improved healthy immune system fully take over.

The donor is available and ready to get my team what they need. However he recently had an immunization for yellow fever and the Beth Israel infectious disease folks are weighing in to determine when it is safe for him to donate his stem cells. The plan is for me to have the infusion before the end of the month.

Over the past couple weeks I developed a rash covering my back,stomach,arms and legs. It is gradually clearing up with graft vs host the most likely reason for the rash. GVH can be a very dangerous complication of a transplant. In a nutshell it is my donor immune system attacking my body. However small bouts of gvh can be really good when controlled by medications.  It shows my new immune system is hard at work. If I do have gvh of the marrow that too should resolve itself with the help of medications.

So all in all going in a good direction again which is great but oddly overwhelming somehow.

Thanks for checking in and will update you later this week.

Love  Maureen

Monday 10 /5

What an awesome weekend. Emma had a busy social weekend. She is really looking forward to seeing big brother toga Joe this coming Columbus Day weekend. Toga Joe earned his nickname based on how he spent his weekend at Bowdoin.

Jim, my Mom and I enjoyed a lovely dinner with our great friends Jack and Judy while watching the buckeys stumble to victory.

Back at the clinic and have a partial read of the bone marrow biopsy. It shows my bone marrow is not filled with leukemia which is awesome as that was one of the things that could explain the low white  count and low platelet count.  It does leave us wondering what is going on. Could be graft v  host. We will have a better sense of that when the full read of the biopsy is in.  I also had a skin biopsy today on a pretty little rash that has been spreading rapidly. This too could be gvh and that would not be a bad thing as it shows my new  immune system is hard at work.  So again living in the land of uncertainty but I am so glad there was no back  news.

Getting an infusion now to help with the development of platelets.  Then maybe more platelets and red blood.

Will probably be going in to the clinic daily for awhile. We will keep you posted.

Thanks for checking in. Love Maureen

weekend update Friday 10/2

Still sorting through the next steps in my treatment plan. My blood counts remain low which can be explained by the chemo or possibly leukemia still lingering in my marrow. Even though my labs have shown no leukemia blasts in the blood the leukemia may still be in the marrow.  Hoping  that is not the case and thank you in advance for applying the power of your kind prayers toward a clean bone  marrow biopsy.  I had the biopsy Wednesday 9/30 and should have the results early next week.  At this point my treatment plan is an`if this then that` situation. Depending on the biopsy results I may do another round of the immune stimulant chemo called azocitidine. This is the 7 day outpatient infusion chemo I had back in August when the leukemia first recurred. I may also go straight to the donor lymphocytes infusion (boost of original donor cells given to me intravenously).  Finally I may get a more aggressive chemo regimen or some other aggressive treatment ( really hoping that is not my path).

In the meantime life has been busy.  In our search for ways to keep busy that don't involve crowded places (still neutropenic) or too much walking (still getting short of breath) my mom and I have begun attacking the closets. We started with the craft closet.  If anyone needs 500+ crayons or multiple bead jewelry sets let me know.

Jim and kids are good. Joseph comes home next weekend and we cannot wait. Emma is busy with school, rowing and preparing for a  jawdy competition. This is a geography competition among area schools and she and  best pals Caitlin and Samantha are reigning champs representing st Mike's again this year.

Thanks for your prayers,cards, meals, rides and all your other kindnesses especially during this uncertain time. Will update you as soon as I know more about my next steps.

Thanks for checking in. Love Maureen