New Treatment Options

We traveled to MDA on Thursday and spent the night at the MDA Rotary House to be close to my clinics for the Friday blood tests and appointment with Dr. Kadia. I was also able to meet Lori Griffin, our Stem Cell Transplant Coordinator, that Friday morning after my blood draw.  She and I have talked on the phone several times but we wanted to put a face with a voice. She is a delightful person and was so accommodating to us. Her latest news was that the potential donor had requested a different sample collection site than the original one in their enrollment on the registry. This puts a further delay in getting the transplant done anytime soon according to Lori. Unfortunately, they can't tell us how long or when we can proceed.

Doctors Kadia and Jones (transplant Dr) have collaborated on a different plan. Neither one of them want me to do another round of the chemo that was in my current trial because it left me with such a hard recovery and the next round could jeopardize my having the stem cell transplant any time soon. Since the above donor delay will likely delay things anyway, it seemed a good time to try to get me approved for the new "study" we noted in a prior post under "Change of Plans". Also, this new approach is appealing since it is not chemotherapy but a medicine aimed at a very specific genetic cell group. Likewise, the side affects appear to be far less than chemo effects me. During our appointment with Dr. Kadia he advised that I was the next person on the wait list to become a part of a new study presented at the 2014 American Association for Cancer Research (AACR) Annual Meeting AACR that showed promise for a new targeted therapy for acute myeloid leukemia (AML) as well as patients with High Risk MDS. The drug, called AG-221 (Agios), is targeted to the isocitrate dehydrogenase- 2 (IDH2)-mutant protein expressed in AML. This is the IDH2 inhibitor believed to be the source factor in the progression of my disease.

If all goes well I should get a slot by sometime next week according to Dr. Kadia. Then we will go back to MDA to begin the preliminary testing in preparation for my treatments. This is now scheduled for next Friday, October 3rd provided I get an open slot by then. We will be having a minimum stay of 28 days. The protocol consists of a daily oral dosage of a pill that can be administered by us where ever we are staying. Unfortunately, that can't be at home in Jackson because we must be blood tested and closely monitored by our MDA team according to the study guidelines.  

So it looks like we are seriously looking for an apartment or extended stay housing instead of the expensive daily rate hotels we have been staying in during our shorter stays. We are on the wait lists for a few near the Medical Center that offer assistance to Cancer patients although it's unlikely we can get into one of these on such short notice. Likewise, some of these require a stay of three or more months. Since we may not get to the transplant phase for several months we are once again in the "unknowns" of logistical planing. We are hopeful something can be found to meet our needs.

Needless to say, I am delighted to not be taking another round of chemo right away, yet apprehensive about the new study and whether it will work for me. I guess you can say we have become health care pioneers in this journey. I've often wondered what it would feel like to be a "Guinea pig", so now I will find out.

Waiting For News

I contacted my Stem Cell Coordinator, Lori Griffin, at MD Anderson yesterday to see if we had any word yet about the donor being available for the transplant. She had not but told me it takes several days to a few weeks because all communication transpires between her and the national transplant registry officials.  They do all the communicating with the donor  to keep them anonymous. She hoped she would get word before we go for my next chemo treatment on September 25th. 

That appointment may get postponed since Dr. Jones and Dr. Kadia know how hard the first round of chemo was on me. They want me healthy as can be expected before either more chemo treatment and/or the transplant process begins. Sometimes it seems like a "catch 22" in that everything is dependent on my "Blast" percentage as well as my strength. That blast number dropped to 4% right after my last chemo treatment, indicating it worked. However, 3 weeks later, without more chemo, the blast went up to 8%. It's very likely that by the time of my next appointment the blast may be right back too high to do the stem cell transplant. Thus the "catch 22", more chemo weakens me so that I may not be able to do the transplant but the reduced blast from the chemo make the transplant more possible. Hopefully, we can overcome this dilemma soon.

As for my overall recovery at home, things are going very well. My appetite is almost back to normal and I've gained back about 10 lbs of the 20 lbs I lost during the 5 week ordeal of my treatments and the pneumonia occurrence. So my strength is better and I'm more stable in my standing and walking, too. I still get tired very easily when I do too much. Later in the day to early evening are still my worst times of fatigue. But I'm encouraged as each day brings more and more strength. I need that so I can do more exercise to get my muscles strengthened as well.

So we continue to wait for good news about the transplant.

Traveling Home Again

We're on our way home again, having stopped along the way in Ruston, LA about 6:00 pm. Janine was tired from the drive and a lack of peaceful sleep the night before. Like Sarah she worried about what would be said by my Doctors. After the good news however, we didn't get on the road until about 12:30 so we needed to stop and rest instead of pushing our trip home in one day/night. I was very tired, too. We both crashed into bed about 8:30 pm and didn't move until 5:30 am (well not counting bathroom breaks throughout the night).

If you haven't read Sarah's post yesterday, please do. She put into words the best description of my Dr. visits. Thanks again, Sarah. You're the best daughter, EVER! She has become our recorder, our "sponge" soaking up every important detail that often goes unheard by Janine and me. Really, her post was longer than most but far more informative than I could ever write.

Once again, we look forward to getting home and resting for a bit. The travels (all by car) get tiring. We could fly, but to us, that would be even more stressful. Driving also gives us the freedom to take more "stuff" with us. When we go to MDA for appointments and treatments we never know for sure how long we will be there. So we pack with a lot more clothes and other necessities that could never happen if we flew. 

Recently I commented on decisions we need to make about important matters . Now that our treatment plans have become more focused and we just about have a timeline set, we know we now need to secure long-term (3 months or more) housing in Houston, in or very near the Medical Center area. They tell us to always be less than 20 minutes from MDA. Given Houston traffic, that is about 5 miles or less from the hospital and my clinics. We are enrolled on three apartment wait list that offer low rates for people in cancer treatment. Some are even free but these have long wait list so we likely will need to seek other options. Always unknowns to deal with!

So yes, we go home, rest, fatten me up while getting me fit and take care of household matters, again. We are happy and thrilled to be where we now are but still apprehensive about our next steps. God is good!

MATCH

Today was a good day.  I had a rough night sleep, anxious about what they would say at the appointment today.  I'm my mother's daughter, I worry.  I was trying not to get all excited about the "Perfect Match" that Dad's transplant coordinator (Lori) told him about on Monday.  I was trying to prepare myself that the Bone Marrow Team would tell us Dad was not well enough for the transplant.

But all that changed about 9:45.  Prior to our meeting with Dr Jones and Team, Dad did a pulmonary test and did pretty well for a guy with COPD, probably a bit of lingering pneumonia and still recovering from chemo.  Mom and I could barely keep up with him walking around the hospital from the lab to the cardiopulmonary center to the Stem Cell department.  Such a change from 2 weeks ago when he was slow moving walking with a cane.  He was walking like that guy that used to walk 10ks!

Dr Jones PA (Richard) confirmed all the good news we'd heard from Lori and also said he'd (barely) passed the lung function test for the clinical trial they want to put him in... the STEM CELL TRANSPLANT trial. He's ready, we have a perfect match, its time!

Dr Jones spoke with us at length and answered all our questions.  He would like to push the Transplant Center to make this happen FAST, like in 4-5 weeks.  He's trying to keep Dad from doing another round of maintenance chemo so that he can continue to gain weight and can continue to exercise and can continue to get stronger.  He needs to be STRONG physically.  He doesn't care about Dad's blood counts (that are low)... he's going to kill all those before the transplant anyway.  He just needs dad to fatten up and get his lungs as healthy as he can.  We can do this!

He explained that dad fits well into a clinical trial that they are studying using existing combo of chemo but in a different sequence that they believe will improve effectiveness while reducing toxicity.  Since Dad had such a rough go of the last round of chemo, is older, etc, they think this is the right path for him.  He has to have 50% lung function and he squeaked in at 51%.  They think that will continue to go up as he continues to gain strength so they are not worried he wont qualify.

We will also have to wait to make sure his Leukemia doctor doesn't object and thinks he's okay to go 4 more weeks with no chemo.   It's possible he could still start the new drug if that works out but we don't know any details on that yet.

Lori will let us know this week on dates.  They will ask the Transplant Center, who will work with the donor, to get this done as soon as possible.  If all goes well (the donor could have conflicts that require us to push back), we are thinking Dad will be back in about 3.5 weeks to start his final preparations and then a week of chemo.  The Transplant would then happen after the chemo and we'll go from there.  It's looking like Mom and Dad will have a Houston Thanksgiving and Christmas and we'll say goodbye to 2014, ringing in 2015 on the road to being cancer free!

We should know more details by the end of the week.

Today... we are excited and focusing on the end game... a cure.  We know that this process is going to be HARD on Dad physically and emotionally.  It's going to be hard on the rest of us in different ways.  The remainder of 2014 is going to be rough.   But today, we are looking to the future.  To more family vacations.  To many more years of memories.  We are relishing in hearing the Dr say things like "you'll be seeing us for check ups for the next 4 years" instead of things like "6 months untreated".

More later!

--Sarah

Three Days of R & R

We are tired. Janine has been working like a dog tending to me and doing everything imaginable.  Having three days off to spend with Sarah, Ryan, Cason and Claire will be a great treat and diversion. We left MDA around 10 am this Saturday morning and drove up to their house, arriving a little after 11 am. I wish we could go home now but we have appointments on Tuesday of next week with the Stem Cell Transplant Team. We are so grateful that Sarah and Ryan live close by. When Ryan built their house he added an extra bedroom suite complete with a full private bath room on the ground floor for guests. We affectionately call it the "Mississippi Room" because it is decorated with memorabilia from Sarah's home town, Jackson and from our beloved "Dalewood" Lake near Meridian. When we visit them it becomes "Neanie & G-Paw's room, however. Thanks y'all for letting us stay with you for a few days.

If all goes as planned we will finish up at MDA sometime mid to late Tuesday morning and head back home until September 25th, when we travel back for treatment. The likely possibility of having a stem cell transplant in the near future is very encouraging. We know that process will change our lives for several months, having us move to Houston for a minimum of three months with numerous trips back and forth after that for about a year.

We have major decisions to consider as we approach all of this. Do we sell our Jackson house and permanently move to the Houston area? Leaving behind our church family and friends would be unbearable. Yet we can't afford to maintain two homes so far apart at this stage of our lives with constant travel back and forth between the two. Decisions!

In spite of our many concerns, I remain optimistic that God has a plan for us that we have never imagined. He will provide us with strength to do what he wants us to do. I just pray that we will have the courage do his will, not our own desires.

IDH2

To follow on Dad's last post, what I heard Dr K say is that dad has an IDH2 mutation and that a very new drug study has shown great promise. It's an IDH2 inhibitor that is not toxic like chemo.

I found these two articles that explain this drug and the positive results.

Maybe this will be a door opening to a more tolerable treatment!

http://www.fiercebiotech.com/press-releases/new-agios-clinical-data-ongoing-phase-1-trial-ag-221-continue-show-complete

http://www.onclive.com/publications/obtn/2014/June-2014/IDH2-Inhibitor-Shows-Promise-in-AML

Science is pretty amazing!!!

--Sarah 

Change of Plans

We met with Doctor Kadia earlier today than originally scheduled. His nurse called this morning and ask me to get my labs done this morning which got me in to see the Dr about 2 hours earlier, also. He decided to hold off again on my chemo treatments for two more weeks. So we will be able to go back home on Tuesday after we see the Stem Cell Transplant team that morning.

For now I am currently in the Infusion Clinic receiving two units of red blood cells and two units of Magnesium. We started this about 5:30 pm so in 4 hours or there about we should be released to go back to our hotel. So the "roller coaster ride" continues. Saturday, Sunday and Monday will now be off days so we plan to check out of the hotel tomorrow and go spend this time with the Pauls.

A new development was revealed by Dr. Kadia today. He said a new study was being done which he thinks I could qualify. I don't remember all the details but it sounds most encouraging. It was described as being in the experimental stages with only 15 patients nationally in the study. He said there are a few more slots available so he was going to see if  I could qualify and get admitted. Apparently, my specific cells have an infection that can be treated with a new drug in the study that only a few people like me have. This is a far less invasive drug than I'm currently on. He thinks continuing on the trial may still be necessary but if I can get approved for the new study in a few weeks we will try that first. So we are hopeful this can come to happen. It may be a long shot because many other people throughout the country will be trying to get included. So stay tuned!

El Chaparro Mexican Restaurant

While we sat in the long drive in line at the What-A-Burger in Jackson, just before we hit the road to Houston, I told Janine I wanted to travel the "Southern Route" via I55 South to I10 West coming into Houston closer to MD Anderson than if we went our usual, Northern route. You would have thought I told her the "sky was falling". Janine doesn't handle change very well. She likes the familiar, even when it's 50 miles or an hour longer than trying something different. So as we started out heading south on I55 I could feel her uneasiness growing and her protests getting stronger at my decision. When we turned onto the brief stretch of I20 West before I55South branches off towards South Misssissippi she decided to stay on I20 heading towards Vicksburg, our normal route. After all, she was driving, so it was her call. When you are at the wheel, logic prevails, even if the facts are against you. She is wiser than most.

So I started calculating the cost of her error in judgement and quickly discovered we should make it to Sarah and Ryan's house in Wood Forest by 5:30 pm., if we wanted to wait out the Houston rush hour and get in a brief visit with them and our precious grandchildren. It was at that moment that I thought of my favorite Mexican restaurant, El Chaparro. It's real close to their house so I figured we could meet them there, if they didn't have other plans. I sent Sarah a text message about the possibility of this without first asking Janine. Why rock the boat again with the "queen of change"! After about 5 minutes, Sarah replayed she was meeting her girl friends for supper but that Ryan and the kids would like to go with us to El Chaparro. (Not surprising as it is one of Ryan's favorite spots, as well.) Now that I had it set I broke the news to Janine. She laughed because she was now off the hook for whimping out on the change in my route choices.

We met Ryan at the house at 5:30 pm as planed. After a brief visit we left to get gasoline in route to the restaurant while Ryan picked up the kids from the day care. We all met at El Chaparro a little after 6 pm.  It was a delightful time, the kids were in great form and behavior. They have grown and blossomed into wonderful children, adorable and so very smart. Claire sat in her "Neanie's" lap  

the whole hour we were with them. They just bonded, warming each other's hearts and souls. It is beautiful to behold. Ryan, Cason and I enjoyed our meals and "man" bonding, as well. Thanks Sarah, we missed you, sort of.

I Hear Them All - 911 Remembered

I know my words may not be well received by many of you but I am compelled to write anyway. This song by Dave Rawlings beautifully says how I feel about our need for peace. On this 13th anniversary of 911 when we remember the terrible losses our people suffered at the hands of terrorist it's easy to call our nation to arms, once again. But please also remember the many sons and daughters, husbands and wives, brothers and sisters who have been lost and the countless ones who will be in harms way when they are called back to unnecessary, winless conflicts in the Middle East.

"I hear the crying of the hungry in the deserts where they're wandering Hear them crying out for Heaven's own, benevolence upon them.Hear destructive power prevailin', I hear fools falsely hailin'

To the crooked wits of tyrants when they call

I hear them all, I hear them all, I hear them all

I hear the sounds of tearing pages and the roar of burnin' paper

All the crimes and acquisitions turned to air and ash and vapor

And the rattle of the shackle far beyond emancipator

And the lowliest who gather in their stalls

I hear them all, I hear them all, I hear them all

So while you sit and whistle Dixie with your money and your power

I can hear the flowers growin' in the rubble of the towers

I hear leaders quit their lyin', I hear babies quit their cryin'

I hear soldiers quit their dyin' one and all

I hear them all, I hear them all, I hear them all

I hear the tender words from Zion, I hear Noah's water fall

See the gentle Lamb of Juda sleeping at the feet of Buddha

And the prophets from Elijah to the old Paiute Wovoka

Take their places at the table when they're called

I hear them all, I hear them all, I hear them all

I hear them all, I hear them all, I hear them all

I hear them all, I hear them all, I hear them all"

Anticipation

We are sitting in the waiting room at JOA on Wednesday morning, having just had my blood drawn for my twice a week CBC tests. One of our favorite nurses, Angela, did the blood draw. I will see a different nurse next to discuss the test results. It normally takes between 15 to 30 minutes after my blood is drawn before my results are available. This morning, the clinic is busy with a lot of chemo patients so this may be a very long wait.

My anticipation is whether or not we will be able to leave tomorrow for MDA for my Friday through Tuesday treatments. Last week we got postponed because my blood counts were too low for me to do the next round. So today we face the same possibility. Janine wants us to go no matter what my counts show because we really need to talk to my Doctors about several things. As usual, she is right!

On a positive note, I spoke with my MDA Stem Cell Transplant Coordinator, Lori Griffin, yesterday. She told me they have two very strong match possibilities, one of which has already been contacted and has submitted their blood to my team for further testing. She was very optimistic this one will be an exact match, but could not say for sure until the blood testing is completed this Friday or next Monday. So our "anticipation" is for this outcome, as well. I try not to get too excited because it is such a specific science, and the process may rule this person out, even if they match due to any number of reasons. The other strong person for a match has not been tested yet, so they may only get contacted if the first one is not a match or ends up being unavailable to donate. That process is very donor dependent. We are pretty much at their mercy and just have to patiently wait for the coordinator to get everything lined up. We also set up a new appointment with Dr. Jones, our Stem Cell Transplant  physician for Tuesday morning of next week to further explore the process and be more closely examined to get me healthy for the coming transplant.

We are now home from JOA with the latest blood test results that were not improved, even a bit lower than on Monday of this week. Luckily, it didn't take as long as I thought. No infusions of red blood or platelets were needed, too. So we just continue gettting ready for tomorrow's road-trip to Houston with "Anticipation".

Appointments Postponed

We were in the process of packing and loading the car this morning for our MDA Houston trip, when I got a call from my doctor's nurse advising me to wait a week before going back out there. It seems my blood counts, taken here at Jackson Oncology over the past week, were not good enough for me to withstand my next chemo treatments. So we get an extra week at home, a mixed blessing. On the one hand we wanted to get this second round done now, but understand the delay. Otherwise, having this extra week allows me to get my strength and counts up to a better level. Plus, we both need this time to rest more and to better organize our household matters like paying bills, paperwork filing, house chores, etc. While this past week was a much needed rest for us, we really didn't get near accomplished what we wanted to get done. After the long 5 weeks at MDA we were so exhausted we took our time recovering and put off some things that we can now get done.

As for me and my health, I'm still in the fight. My blood counts remain low and the numerous medicines for infections I am taking make me very unstable everytime I stand or stay on my feet more than 4 or 5 minutes. My breathing is also labored at these moments.  The common side effects of most of my drugs cause me issues ranging from dry skin to nausea not to mention dizziness, extreme, fatigue and even my mental concentration, at times.

Janine has been able to go back to work on a limited basis. She still won't let me stay at home alone. For the past few days, her sister Dee, has been here helping out tremendously.  She really has been a blessing for us in so many ways, freeing us to get even more rest and Janine doesn't mind leaving me  at home alone when Dee can be here. Thanks Dee!

Finally, keep your cards, letters, calls, visits and prayers for us coming. We love being in touch with what's going on, especially when we are gone for extended stays. More importantly, these "gifts" give us comfort, joy and draws us closer to you all.