DC sheds a promising new light for Deb’s treatment plan

Our appointment with Dr. Ahlgren and Dr. Lisa Ignacio at George Washington University Medical Center was very informative and a definite worthwhile trip. We were so grateful to have them both in one room at GWH going over Deb’s current medical condition and recommended treatment options. Their knowledge, specialized experience, and compassion was overwhelming. Every new piece of knowledge learned in this journey no matter how small brings much hope and continued strength. As we were previously made aware, Dr. Ahlgren’s and Dr. Ignacio’s treatment options were much more aggressive than our current short term plan.


In summary, we came away with the following treatment plan for Deb:

1) Increase the current Sandostatin dosage
Dr. Ahlgren stated that Deb’s current dosage of 3 times daily (1ml each injection) was not aggressive enough and with confidence, recommended increasing the dosage to “tumor killing dose” which will in fact help shrink the tumor in Deb’s liver. He is sending his recommendation to Dr. Brodeur with the details.

2) Chemoembolization
We are going to pursue with our local Oncologists the chemembolization treatment which was not a initial recommended treatment option for Deb. Chemoembolization involves using a catheter to deploy chemo medicine directly to the liver tumor via the hepatic artery. What is unique about this chemo treatment to the liver is that the medicine remains in the liver to directly attack the tumor and is not exposed to the other organs. There are definite side effects but as not as intense as other traditional chemotherapies. Dr. Lisa Ignacio already knows of a specialist at Emory that is very experienced with this treatment if we are unable to get treatment via our current Oncologists. There is usually 4 weeks between treatments to give Deb time to recover. It is estimated to see 30%-60% tumor shrinkage in 2 to 3 treatments. Even a 10% tumor shrinkage can drastically reduce the pain Deb is feeling in her abdomen area due to the tumor pushing against the liver membrane. The first treatment will require 24 to 36 hour hospital stay just to be sure Deb is feeling okay and there are no issues. MRIs will be used as a baseline in between each treatment to determine level of tumor shrinkage.

3) Hepatic Infusion Pump
In the event that there is not enough success shrinking the tumor via the chemoembolization treatments, we will also consider a Hepatic Infusion Pump which would be surgically implanted, charged, and allow consistent deployment of the chemo medicine via the hepatic artery to the liver. This is obviously very specialized and not available in all areas. Dr. Ahlgren is going to contact Dr. Nancy Kemeny in NYC who utilizes this treatment option to her patients. Treatment dosage would be every 1-2 weeks and then you simply turn the pump off. We hope this option will not be necessary for Deb but will begin to proactively pursue more information, contacts, etc.. in the event we need a backup plan to the chemoembolization.

What comes next after the chemoembolization?
Because Deb’s liver has the largest tumor, our current priority is on treating the liver first. When the time comes, we will explore Deb’s treatment options including possible resection in more depth for lesions on pancreas, kidney, and neck thyroid nodule.

So, our mission this week is to get the above treatment options approved by our current local Oncologists.

I have always believed that knowledge is power and is so more true than ever when it comes to fighting for the precious gift of Deb's life. THANK YOU. So many of you to thank so we just want to thank everyone again that helped get us to this point in Deb's journey. We have come so far in the last month and will give Deb then strength for what lies ahead in her journey.

Deb continues to slowly adapt to her new Sandostatin hormonal injection other than the sickness directly after receiving each injection. We have seen in less than one week that she is not requesting her full dosage of pain medicine which I hope is due to the Sandostatin. With less pain medicine, Deb is very alert which is so enjoyable for all of us. Deb is not sleeping the entire night but with the ambien sleep medicine, is less restless She still gets tired walking any distance so we use her wheelchair on our much enjoyed walks in the neighborhood with her Mom and little Teddy.

As I watch what I think was the most memorable 2008 Beijing Olympics come to end tonight, so shall I.

Love to all and KTS!

Rod and Deb

You bring me joy
Anita Baker

DC Bound to George Washington Hospital

With so much support from some special friends out there, we have confirmed appointment with Dr. Ahlgren on Thursday at 215pm at George Washington hospital. Deb and I are very excited and blessed to make this trip.

Until I can thank you in person, I want to stop and use this opportunity to personally thank all of you again through this journal that have been incredible support to Deb and our family. Lisa in DC for your continued support to us via Susan/Ellen, Barb/Kevin/Tina Y. for the DC airline tickets, Leslie/Scott for ticket, Lisa M. for using her points on DC hotel, house supplies, scrumptious meals, all Deb’s thoughtful birthday gifts/goodies, lunch excursions with friends, pedicures, Bonnie, weekend with Connie/Reed/Susan/Ellen, my parents special love/gifts, all the beautiful flowers from everyone which add great color to Deb’s journal and so many others that are too many to list.

Short Term Treatment Plan

We have completed the Oncologist appointments last week with Dr. Yaffe and today with Dr. Brodeur. Both Oncologists have confirmed for Deb to immediately taking the Sandostatin hormonal injection that is a synthetic base hormone that will assist in slowing the growth of the existing neuroendrocrine cancer cells. This treatment will not necessarily shrink the tumors but will help Deb feel better after she gets use to the injections. What’s nice is that we will administer the injections at the house. I was certified today and passed along to Bonnie tonight. In addition to the Sandostatin, Dr. Brodeur has referred us to a ENT (Ears Nose Throat) specialist to discuss removal of the 1 cm thyroid nodule in Deb’s neck which should reduce some of the sickness she is currently experiencing. After two weeks of self injections, Deb will get a monthly injection from nurse at Cumberland. We are still not clear on our longer term treatment plan options so I will hold off on listing the options here until we discuss further with Dr. Ahlgren in DC tomorrow.

Deb has been doing better this week and is more alert/less foggy from the pain medicine since we switched from a dose every 3 hours to a dose every 8 hours (time release). For the first time in the last few days she has been able to at least sleep for most of the night. Each new day we can tell she is a little bit more caught up on her rest but still many days to go. She is able to walk around fine on her own around the house but takes too much energy to go out shopping, etc.. without the use of a wheelchair.I was able to order the wheelchair today and along with her new handicap permit, will make her trips outside the house less complicated.

It was a good, productive day all around and we learned a lot more from Dr. Brodeur visit. We look forward to meeting you in person tomorrow Lisa and thank you for taking time out of your day to meet with Dr. Ahlgren and us.

Sleep well beautiful.

Love to all and KTS!

Rod and Deb

You're in my heart, you're in my soul.. You'll be my breath should I grow old.. You are my lover, you're my best friend.. You're in my soul
Rod Stewart

Happy Birthday Deb

We love you,

Rod, Taylor, Tommy, family and friends

Loving you is easy cause you're beautiful.....
Minnie Ripperton

Happy 16th Birthday Taylor

We love you,
Mom, Dad, Tommy

p.s. Happy Birthday too Lisa E. !

MEN 1/Neuroendocrine Stage IV

On behalf of Deb and our family, we want thank all of you at Deb's school, our neighboorhood, friends, and coworkers for the overwhelming love and support for Deb. Bless you all!

MEN 1/Neuroendocrine Stage IV
We have received most of the test results from Deb's testing over the last 2 weeks and will provide brief summary from what I can decipher from the documentation until we meet with Dr. Yaffe tomorrow to obtain further details. Her initial diagnosis from Dr. Brodeur is called MEN 1/Neuroendocrine stage IV. The CT Scan results conclude that her cancer is primarily in her right hepatic lobe of liver and small lesion also on the left kidney. Her pancreas contains a well define cystic lesion. The lesion in the pancreatic tail is also in intimate contact with the left adreanl gland. The MRI brain scan was good but found also a small 1cm left thyroid nodule in her neck. Deb has also been diagnosed with hypercalcemia and may be related to some of Deb's confusion that she is currently experiencing along with the hormonal changes and hypermorphone pain medicine.

Initial Treatment
We will know more details about the plan tomorrow with 11am appointment with Dr. Yaffe but from the Dr. Brodeur's notes, he indicates to start Deb immediately on Sandostatin. I don't know all the details yet but it is hormonal treatment and suppose slow down the growth of the cancer cells and help to keep Deb comfortable. Some of the other treatments mentioned include liver emboolization or chemoembolization. The chemo options include Temodar or Strep/Adria. There is also possibility of adding alpha-interferon at a later date, after dose-escalation of Sandostatin.

2nd Opinion
Deb's medical complexity obviously warrants a second opinion and we are currently working with Susan and Lisa in DC. We are beginning to plan a flight to DC asap to meet with one of the Oncologist's at George Washington hospital that specialize in neuronendrocrine tumors. Lisa has already recommended Dr. Ahlgren and will be an integral part in expediting consultations and possible treatments if necessary for Deb. Lisa you are amazing and I cannot wait to meet you! What is surprising to hear is that Dr. Ahlgren knows of no one in Atlanta that specializes in neuroendocrine tumors.

Our next steps are to get results from the Octreoscan which I am picking up at lunch today (Thanks Jamie!) and Northside ER visit. We will hope to get referral from our Friday appointment with Dr. Yaffe to meet with Dr. Ahlgren in DC.

Currently, Deb continues to rest comfortably at the house with the care from her wonderful mom, Bonnie during the day while I am work. The hydromorphone pain medicine continues to aid her continued pain in the right abdomen area which unfortunately has not gotten any better. It has really slowed down her from being able to get around the house along with heavy sedation from the narcotic. Her fevers have been reduced alot over the last four days and see only briefly at night before bed. If you talk to her, just know that she is very aware of everything but her intermittent pausing and confusion is due to all the different changes in her body.

Thank you Mom and Dad for the beautiful flowers and goodies for Deb. Know that we are all thinking about you Mom and your planned back surgery. Our prayers will be with you always for a speedy recovery. We love you :)

We anxiously await our appointment with Dr. Yaffe so we can move forward with treating our beautiful Deb.

We love you and KTS!

Rod and Deb

High fever weekend

Deb has just been admitted to Northside Hospital Saturday evening under the care of Dr. Funk for thorough additional testing due to sporadic high fevers for the last two days. They are going to try to determine source of fevers that she has been experiencing. We started with Kaiser Emergency with Dr. Beard and after explaining Deb’s last 48 hours, he agreed that she needs to be admitted immediately to Northside which is the best news we have heard.

It started Thursday night with Deb experiencing high levels of confusion while running a temperature of 101. We contributed some of this possibly to the Fentanyl narcotic patch and decided to remove first thing Friday morning. Next morning Deb was back to her normal self when we removed the patch so I went to work. During the day, her temperature went back up and at the same time so did her confusion and reasoning levels. Tommy called me on my way home and said to get home quick because Mom was very confused and saying things that did not even make any sense. After talking with Kaiser that night, we agreed that this may be related to the Fentanyl still in her body and decided to sleep it off and make decision Saturday morning. Thank you Tommy and so proud of you!

Saturday morning Deb’s temperature was normal again with little to no confusion. I was elated and was hoping this was due to no more fentanyl in her body. All was great until mid afternoon two hours after Susan and Ellen came over. Deb had been resting and when she came down to sit with us her temperature began rising to 102.1 and so did the confusion once again. After another hour and some ibuprofen, her temperature rose to 102.9. That is when we said it’s time to go in!
What was odd is we gave Deb some ice chips and then I went upstairs to get her some clothes. Within minutes of coming back downstairs, Susan said her temperature was dropping and I could immediately tell from her just looking more “peppy”. What we begin to learn from all this was that Deb’s confusion would continue to get worse the higher her temperature. By the time we got to the Emergency room, Deb’s temperature returned to normal.

Most of the blood and other tests have been completed tonight and Deb getting ready to move to her overnight room upstairs at Northside. Met with the IMS, Dr. Espinosa and initial findings is a urinary tract infection that too early to tell if related to the fevers. She is doing fine eating her ice, not running a temperature and watching the Beijing 2008 Olympics.

Was able to get some preliminary results from Deb’s follow up CTScan and MRIs from the Kaiser nurse tonight. I will post later after I read thru them.

We are learning quickly from friends (thanks Lisa!) that trips to the emergency room continues to expedite everything and hopefully get Deb closer to a solid game plan.

Good night beautiful and KTS :)

Rod

p.s. Thank you Connie, Susan, Ellen, and Anita!

Update 08.10.08
Deb has been at Northside all day and has not had anymore high temperatures today. They have not yet determined the source of the fevers and as a result, decided to keep Deb for another night since they do a wonderful job with pain management that we cannot do at the house. Now that her pain medicine is completely out of her system, Deb started feeling pain in her right abdomen again and they have given her new pain medicine called dilotin. It has helped alot with her pain but has made her quite tired, foggy, and sleepy all day. Deb was also anemic and received a blood transfusion today.

We were treated with a special visit from Oncologist, Dr. Yafee, who was on call this weekend from Kaiser. This is the first time that we got to meet him after hearing great things about him. He has acknowledged all of the tests that have been given to Deb by Dr. Brodeur and told us what to expect for the Nuclear medicine test tomorrow and Tuesday. Because Deb is already at NS, we are going to see if we can have this scheduled test here in place of Glennlake. We are waiting till we talk to Dr. Brodeur early this week so we can have the big picture test results of everything.

Talked with Deb's Mom Bonnie and sister Susan today. Bonnie will be flying in Tuesday night to stay with us and give Deb her much needed love and attention to keep her strong. Thank you both and it means very much to Deb, me and the boys with you being here.

Deb was missing her bed which I always refer to as her nest so much so I went back to NS tonight to bring her some of her favorite pillows and blanket. I can tell it made all the difference as she snuggled right into one her typical peaceful sleep.

Sweet dreams my beautiful Deb and I will see you in the morning.

We love you and KTS.

It was a whacky day

Tommy just looked over at me tonight with Teddy in his lap and said "Dad, today was a whacky day huh". I love you Tommy.

Deb's MRI went fine in Gwinnett today and uneventful until I got a call from Tommy's cell phone while I was waiting for them to finish up with Deb's MRI. It was one of Tommy's friends who told me that Tommy just passed out and hit his head on the pavement while riding bikes in our adjoining neighborhood. Because Tommy has epilepsy, my immediate thought was he was having a seizure which he is taking medicine to prevent. Of course, it was a blazing 95 degrees and middle of day when this all happened so I was trying to apply common sense. Was able to talk to an adult from Tommy's phone that happened to be outside the Unity church nearby and heard Tommy's friends calling for help. Bless you Dave and find you this Sunday to express our gratitude. He was a big help and even drove Tommy home where his big brother Taylor was standing by. Since this is public, I will keep names anonymous but was very proud of Tommy's friends on how well they handled everything. You know who you are and thank you buddies. Of course you too Tay for taking care of your little bro till we got home! I love you Tay.

Mom handled the news surprisingly well went she came out from her MRI. We left Gwinnett and headed home to take Tommy to Town Park for check up. Fortunately, Tommy was shaken up but is just fine except for his new goose egg on his head. Dr. Adan agreed that this was most likely due to the heat and not seizure related based on the symptons.

Deb's tests have been submitted to Oncologist and yeah that there are no more tests for rest of this week. You get to relax baby. Deb is resting and doing much much better with the new pain reliever patch. We are not expecting to hear any more news until after Deb's final nuclear medicine test next Monday/Tuesday.

Thank you for wonderful dinner Barb and Randy. We enjoyed your company tonight!

Paul and Ingrid, Deb got your great book and is so perfect for her and very inspiring. Thank you!

Thanks to all for your cards and KTS!

Rod and Deb

p.s. i love cell phones :)

LB Diagnosis and On the Go with Rod & Deb

On Monday, Deb was able to talk via phone with both the Gastroenterologist, Dr. Kadir and her new Oncologist, Dr. David Brodeur, MD. I was not able to conference in so this is only brief update.

There was not much update from Dr. Kadir other than recommendations to meet with Oncologist. Also talked with Deb's new Oncologist, Dr. Brodeur from Cumberland facility and who is very good. He has reviewed Deb’s liver biopsy results and we were able to get a copy. The results were brief and not conclusive in that they did not determine the origin or type of neuroendocrine cancer cells .

Liver Biopsy diagnosis summary for our Doctor friends, “Liver, fine needle aspirate and core biopsy: Neuronendocrine neoplasm. The aspirate smears demonstrate sheets and small groups of small and uniform neoplastic cells with round eccentrically located nuclei, inconspicuous nucleoli and limited amount of eosinophilic cytoplasm. The core biosy show neoplastic nests embedded within the fibrous stroms. Rare mitotic figures are present. Immunohistrochemical studies demonstrate immonocreactivity of the neoplastic cells for synaptopysin and pakeratin AE1/3, and negative reactivity for chromogranin, CK7, and CK20. These findings are consistent with neuroendocrine neoplasm.

At this point, Dr. Brodeur is requiring some additional tests before he can share his treatment recommendations with us.

Next Steps

1) TODAY. Follow up CTScan with contrast on Deb’s chest and complete pelvis area (Northside Emergency). This was originally scheduled for tomorrow morning at 1030am but she is having this performed as I am writing this update from the NorthSide Emergency center. Deb had a bad night due to unbearable pain in her right side around her liver area and so we went into the emergency room this morning around 9am. The only guess at this point is that it was related to the liver biopsy. Dr. Brodeur indicated that Deb’s hormones are all messed up due to all of this and can be the cause of additional weakness, fever, and nausea. They were able to give Deb morphine for the pain and some anti nauseating medicine so she can handle the barium liquid required for the CT Scan. Dr. Joe Funk will be working with Radiology to facilitate the CTScan with instructions from Dr. Brodeur.

UPDATE (08/05, 9pm) The CTScan fortunately did not show anything new in Deb's chest and lower pelvic area. They were unable to determine root cause as to why Deb was experiencing additional abdomnen pain and gave her new prescription for a patch style pain medicine that last 72 hours and less intense as the hydromorphin that she was currently taking. Deb is resting much better tonight. Good night beautiful!

Thank you so much Pam for the wonderful home cook meal and you are a great cook. Deb, the boys and I absolutely loved it! Do you want to come live with us? ;)

2) Tomorrow @ 1030am. MRI of the brain and neck with/without contrast (Gwinett Medical). Dr. Brodeur ordered this MRI most likely to get some imaging of Debbie's parathyroids (neck) and pituitary (brain). This is similar test that Deb's sister Susan had to have back in 88. Thank you for update Susan.

3) Next Monday, 08/11. Nuclear Medicine Octreotide Test (GlenLake Medical). This is a two day test. First injection at 1030am on Monday and return back the same day at 230pm for additional injection. Return on 08/12 Tuesday @ 230pm for pictures. .

The boys are doing fine. They are loving the juice machine and are now our new certified juicers to help me keep their Mom energized daily.

Love to all and KTS!
Rod and Deb

Jack is in the House

Deb's liver biopsy test results were not yet available last Friday to us and we are hoping to meet with the Oncologist as early as this Monday or Tuesday in Cumberland area to go over results and next steps.

In addition to Deb's energy healing lap dog Teddy and love from all our beautiful family/friends, we brought home the Jack La Lanne juicing machine this weekend to add to Deb's personal healing kit.

A lot of our friends and family have highly recommended a juice machine. We have loaded up on all kinds of wonderful fresh fruits and vegetables to jet fuel our bodies. Awesome machine for the whole family.

It is a peace of mind to know Deb is getting her daily energy boost and filling her beautiful body with natural goodies which will be very important for the days to come.

Thank you Jack and KTS!

Rod and Deb