This is the last week of my my fifth cycle - my drug holiday week - with no infusions of Vidaza and no Procinostat pills three days a week. This coming Tuesday I will have another bone marrow biopsy to see if the fifth cycle of chemo has made any difference.
Many have been asking how I'm feeling. I am feeling well; however finally this week I can tell my energy level is not at a level I am accustomed. I wake up feeling drained, and generally need a nap or the opportunity to at least kick up my feet. I still take my mile and a half walks around the neighborhood (several times a week), but if I go up the stairs too quickly, I feel my heart pounding. This is not typical for me. I am guessing that I am finally feeling more the effects of the disease as opposed to the chemo. My hair is thinning a bit which is likely the accumulative effects of the gentle chemo.
The past month has been difficult in the sense that there is so much uncertainty in which direction I will be heading in the next several weeks. The recommendations of my two doctors (leukemia and transplant) are in conflict with each other. The two "camps" appear to have very different philosophies on how to proceed. One being to continue the chemo that could bring my blast and cytogenetics better under control and the other favoring proceding with the transplant as quickly as possible to avoid the risk of the blasts suddenly rising or my getting an infection.
I have two brilliant and experienced doctors....among the best in the world! The majority of stem cell transplants in the entire world are done at MD Anderson and Dr. Champlin is the chair of the stem cell department. Dr. Garcia-Manero sees the majority of all the patients in the world with MDS. That is why I continue to feel so fortunate to be treated at MD Anderson and to live here in Houston!
Both doctors agree that my only hope is to have a successful Stem Cell Treatment; they both agree my chances are good due to my age and my health. Where the difference lies is in how they wish to proceed from here. We'll see what Thursday's appointment has in store!
Emotionally, I continue to be at peace and resolved that I am exactly where God wants me right now. Although the past few weeks have been emotionally exhausting, the encouraging thing is that each time I started getting consumed with these thoughts and felt myself falling downward emotionally, I heard or read something that reminded me that God loves me and He is in control, and all I need to do is quiet myself, trust that He loves me, and He will show me the way. It is phenomenal all the places I have found Him talking to me....my daily devotional books, the daily scripture readings for mass, a sermon, a friend's kind card or words etc. etc. Today we attended mass at St. Elizabeth Ann Seton church. A woman went up at the end of mass to make an announcement and to plug a new high school youth group forming there. She ended with a quote from St. Teresa of Avila....
"Let nothing trouble you,
Let nothing frighten you,
Everything passes,
God never changes,
Whoever has God
Wants for nothing,
God alone is enough. "
I went up to her after mass and asked her if she could tell me where she found that quote. I explained that I was going to be needing a stem cell transplant soon and that I found that quote comforting. She
quickly said "Oh, where are you going to have it?" When I replied "MD Anderson", She said "Oh wonderful, my daughter is a nurse on the stem cell transplant unit...look her up!" It was clear to me that, yet again, He was talking right to me. I think I'm going to take that quote with me to the hospital as I go through the transplant!
In the meantime I continue to do my research, trying to gather the facts and data, so that I can make the best decision possible based on the facts at hand and the expertise of my doctors.
Tuesday, February 25, 2014
Saturday, January 18, 2014
Timeline
4/2010: Diagnosed with ITP (a long name meaning an unexplainable low platelet count)
by a hematologist at Methodist Hospital. No signs or symptoms at the time. Bone Marrow biopsy #1 prior to diagnosis.
Treatment options provided were to either remove the spleen or take a new medication.
Reluctant to have surgery so chose the medication.
By 2012 bruising started to occur for no apparent reason.
Stayed on the medication for about two years. Visits to the hematologist every 2-6 months.
4/2013:Decide to get a second opinion about the spleen removal following my visit with Dr.# 1.
In no hurry, delays in getting medical records sent over to Dr. #2 for review prior to appt.
8/27/2013: Dr. #2 reviewed all my medical records. Looks at my blood work taken that day. Says she's very concerned about my low white count. Neutrophils are extremely low, "as low as patients on chemo". Gives me a hand full of masks and says to be very careful to avoid getting an infection. Sets up an appointment for another bone marrow biopsy.
9/6/2013: Receive diagnosis of MDS by Dr. #2. Blasts at 12%, but no chromosomal abnormalities.
Placed me at intermediate risk level.
9/16/2013: Appointment with Dr. #3 for third opinion. Dr. Garcia -Manero at MD Anderson concurs with Dr. #2. Apparently Anderson docs. like to do their own bone marrow biopsies. Wants to wait a couple of weeks for another bone marrow biopsy because I had only recently stopped the promacta medication.
9/24/2013: Bone marrow biopsy #3: Blasts at 12%, but one chromosomal abnormality reported.
Places me at high risk level due to added chromosomal abnormality noted by MDA pathology dept.
10/7/2013: Start first cycle of chemo therapy. Double blind (Two drug combination drug trial). Includes 7 days straight of Vidaza and Procinostat/Placebo 3 days a week for 3 weeks. Last week no medications. Visits back to MDA two days a week to check the blood and any side effects.
11/4/2013: Start cycle 2 of chemo Visits three days a week for blood checks
12/2/1013: Bone Marrow Biopsy #4: Results revealed blasts down from 12% to 9%. You want this number to be somewhere between 0-5% to be in remission.
12/3/2013: Start cycle 3 of chemo. Visits two days a week for blood review.
12/31/2013: Start cycle 4 of chemo Visits two days a week for blood checks.
1/29/14: Bone Marrow Biopsy #5. Results show improvement (lower blast count), but my doctor is concerned it's not moving downward fast enough. Plan to go to Cycle 5 of the Vidaza/Procinostat(Placebo) chemo. Another bone marrow biopsy will be scheduled at the end of this month to see where my counts are. Unfortunately the only way to know if I am in complete remission is to do these dad gum bone marrow biopsies. I have been tolerating them pretty well with minimal pain. One of the techs said I must have a high pain threshold!
Doctor G-M's goal is still to get me into remission before taking me to the stem cell transplant.
1/30/2014: Start cycle 5 of chemo. Hair thinning more and more each cycle, and gastrointestinal side effects from the 7 days of infusions. Had an appointment with a "Supportive Care" doctor to see if she could minimize the gastrointestinal side effects I've been having with the infusions. Started on several new over the counter meds to offset the side effects. Hopefully they will work :) No observable side effects from the Procinostat (oral pill I take 3x's per week)
2/4/2014: Had my hair cut into a short "bob" and got my wig and scarves ( Pro bono gifts from MD Anderson Beauty Salon) Jerry loves my new look....hopefully he won't start calling me by another name tonight in his sleep!!! haha.
2/25/2014: Bone Marrow Biopsy #6 scheduled.
2/27/2014: Appointment. with Dr. G-M to get the results of the bone marrow biopsy and revise the plan. Blasts down to 5%. He is ready to send me off to the Stem Cell Transplant now.
3/3/2014: Appointment with Dr. Champlin This week brings news of dates and lots of information about the many steps involved with getting ready for the transplant.
3/17/14: The day started with chest X-ray, Echocardiogram etc. to see if my body checked out.
The X-ray came back abnormal so I was scheduled for a Chest CT scan in the evening.
They say I have a pneumonia in my lungs. Not major, but needs to get looked out before I
have a stem cell transplant.
This resulted in an appointment with a pulmonologist who will do an bronchoscopy to take
a biopsy of what is growing in my lungs.
3/18/14: Saw infectious disease doctor, Dr. Chemaly.
3//18/14: Saw the Pulmonologist. Afternoon had the bronchoscopy. Have to wait and see what is growing in the lungs. Could take two to three weeks.
4/07/14: Saw Dr. Champlin. Chest CT better, but still something on the scan. Will see Dr. Chemaly
the infectious disease doctor tomorrow.
4/8/14: Dr. Chemaly says there is an MRSA infection as well as MAI (microbial avium intercostilosis) infection.
by a hematologist at Methodist Hospital. No signs or symptoms at the time. Bone Marrow biopsy #1 prior to diagnosis.
Treatment options provided were to either remove the spleen or take a new medication.
Reluctant to have surgery so chose the medication.
By 2012 bruising started to occur for no apparent reason.
Stayed on the medication for about two years. Visits to the hematologist every 2-6 months.
4/2013:Decide to get a second opinion about the spleen removal following my visit with Dr.# 1.
In no hurry, delays in getting medical records sent over to Dr. #2 for review prior to appt.
8/27/2013: Dr. #2 reviewed all my medical records. Looks at my blood work taken that day. Says she's very concerned about my low white count. Neutrophils are extremely low, "as low as patients on chemo". Gives me a hand full of masks and says to be very careful to avoid getting an infection. Sets up an appointment for another bone marrow biopsy.
9/6/2013: Receive diagnosis of MDS by Dr. #2. Blasts at 12%, but no chromosomal abnormalities.
Placed me at intermediate risk level.
9/16/2013: Appointment with Dr. #3 for third opinion. Dr. Garcia -Manero at MD Anderson concurs with Dr. #2. Apparently Anderson docs. like to do their own bone marrow biopsies. Wants to wait a couple of weeks for another bone marrow biopsy because I had only recently stopped the promacta medication.
9/24/2013: Bone marrow biopsy #3: Blasts at 12%, but one chromosomal abnormality reported.
Places me at high risk level due to added chromosomal abnormality noted by MDA pathology dept.
10/7/2013: Start first cycle of chemo therapy. Double blind (Two drug combination drug trial). Includes 7 days straight of Vidaza and Procinostat/Placebo 3 days a week for 3 weeks. Last week no medications. Visits back to MDA two days a week to check the blood and any side effects.
11/4/2013: Start cycle 2 of chemo Visits three days a week for blood checks
12/2/1013: Bone Marrow Biopsy #4: Results revealed blasts down from 12% to 9%. You want this number to be somewhere between 0-5% to be in remission.
12/3/2013: Start cycle 3 of chemo. Visits two days a week for blood review.
12/31/2013: Start cycle 4 of chemo Visits two days a week for blood checks.
1/29/14: Bone Marrow Biopsy #5. Results show improvement (lower blast count), but my doctor is concerned it's not moving downward fast enough. Plan to go to Cycle 5 of the Vidaza/Procinostat(Placebo) chemo. Another bone marrow biopsy will be scheduled at the end of this month to see where my counts are. Unfortunately the only way to know if I am in complete remission is to do these dad gum bone marrow biopsies. I have been tolerating them pretty well with minimal pain. One of the techs said I must have a high pain threshold!
Doctor G-M's goal is still to get me into remission before taking me to the stem cell transplant.
1/30/2014: Start cycle 5 of chemo. Hair thinning more and more each cycle, and gastrointestinal side effects from the 7 days of infusions. Had an appointment with a "Supportive Care" doctor to see if she could minimize the gastrointestinal side effects I've been having with the infusions. Started on several new over the counter meds to offset the side effects. Hopefully they will work :) No observable side effects from the Procinostat (oral pill I take 3x's per week)
2/4/2014: Had my hair cut into a short "bob" and got my wig and scarves ( Pro bono gifts from MD Anderson Beauty Salon) Jerry loves my new look....hopefully he won't start calling me by another name tonight in his sleep!!! haha.
2/25/2014: Bone Marrow Biopsy #6 scheduled.
2/27/2014: Appointment. with Dr. G-M to get the results of the bone marrow biopsy and revise the plan. Blasts down to 5%. He is ready to send me off to the Stem Cell Transplant now.
3/3/2014: Appointment with Dr. Champlin This week brings news of dates and lots of information about the many steps involved with getting ready for the transplant.
3/17/14: The day started with chest X-ray, Echocardiogram etc. to see if my body checked out.
The X-ray came back abnormal so I was scheduled for a Chest CT scan in the evening.
They say I have a pneumonia in my lungs. Not major, but needs to get looked out before I
have a stem cell transplant.
This resulted in an appointment with a pulmonologist who will do an bronchoscopy to take
a biopsy of what is growing in my lungs.
3/18/14: Saw infectious disease doctor, Dr. Chemaly.
3//18/14: Saw the Pulmonologist. Afternoon had the bronchoscopy. Have to wait and see what is growing in the lungs. Could take two to three weeks.
4/07/14: Saw Dr. Champlin. Chest CT better, but still something on the scan. Will see Dr. Chemaly
the infectious disease doctor tomorrow.
4/8/14: Dr. Chemaly says there is an MRSA infection as well as MAI (microbial avium intercostilosis) infection.
Monday, January 13, 2014
Sunday, January 12, 2014
September, 2013 Diagnosis
I have recently been diagnosed with MDS or Myelodysplastic Syndrome.
So my bone marrow is not growing correctly, causing immature blood cells (blasts) to grow and reproduce uncontrollably keeping my healthy cells (red, white and platelets) from growing correctly. If any of you watch "Good Morning America", Robin Roberts, one of the anchors on that show, had the same disease. Mine just came out of the blue, where as hers was due to some treatment she had for a previous breast cancer. Unfortunately mine is already at a high risk level. So, like Robin Roberts, I will need a bone marrow/stem cell transplant.
The positive part is that there is a chance for a cure with this form of cancer, if one can get a stem cell/bone marrow transplant. And I have found the leading doctors right here in Houston at MD Anderson! I am so fortunate that I am in very good health going into this! Another huge blessing is that they have identified four perfect matches for my bone marrow transplant. This is an unrelated person (my siblings were not able to be matched) who will donate their stem cells via a blood draw during an infusion process or bone marrow aspiration of the hip bone. It is the donor's choice.(Thank God for selfless, giving people throughout the world who are willing to change the life of someone they don't even know!!)
My MDS doctor's goal for me is to treat me with "gentle chemotherapy" for about 4-6 months. I am in my fourth cycle (each cycle lasts about a month) of chemo therapy. This includes infusions for 7 straight days and another pill for 3 days a week for 3 weeks. I am tolerating it well with minimal to moderate side effects. If everything goes well I will be going to transplant mode by March or April. That's where I will be hospitalized and receive heavy duty chemotherapy....the hair fall out, sick to your stomach kind. My immune system (white cells) will be killed out in order to allow the donor cells to engraph and take the place of the own cells. And I am told that for the first 100 days I will be closely monitored with frequent check ups. The most dangerous side effect of the transplant is Graph Versus Host Disease (GVHD) in which the donor's cells fight off my own healthy bodily organ cells. It can be mild (mouth sores, skin rashes) all the way to devastating consequences, including death. Of course other infections that may crop up are a real threat as well. My transplant doctor has informed me that 1/3 of the patients will not make it through the transplant process. Whenever I begin dwelling on the statistic, my "always optimistic" husband points out that the odds are in my favor, since two-thirds do make it!
For those who know me well, you know that I believe strongly in the power of prayer and all the miracles that happen as a result of those prayers. I am totally resolved to whatever God's will is for my life. I understand fully that His will might not always match with our requests; I believe, however, that we will all one day fully understand the plan He had for us.
I feel so blessed to have "my boys" going through this with me. Jerry is my eternal optimist, my best friend and my rock. My two sons, Stephen (25 yrs.) and Nathan (21 years), have been extremely helpful and caring. I can't thank all my friends and family enough for your strong support. To all, your prayers and positive thoughts are working big time!!
Love,
Gail
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