Chemo Embo @ NorthSide Scheduled

Had a wonderful and productive consultation Friday with Interventional Radiologist, Dr. Frank Levy and RN Specialist Mackenzie King to review details for Chemoembolization treatment. After reviewing Deb’s medical records and also discussing with Dr. Yaffe, Dr. Levy has confirmed that Deb is a candidate to receive the chemo embo treatment. In order to qualify, you have to have at least 50% healthy liver tissue.

Procedure (2 Treatments)
Dr. Levy has recommended two chemo embo treatments for Deb and will be accomplished 1 month apart from each other. The purpose for this is that you do not want to hit both lobes of the liver with chemo medicine risking liver failure so they do one lobe at a time. The first treatment is scheduled for September 30th @ 10am. If treatment goes well, Deb will only be required 1 overnight stay in hospital and will be checking in at 730am for pre-treatment preparation. Deb will be given medications to prevent stomach upset and pain. In addition, she will also be given Octreotide which is same medicine she is getting biweekly. Dr. Levy will start the treatment by inserting needle near groin area and first insert Ethiodol dye into liver via the hepatic artery. Next, he will inject the chemo medicine (not yet sure of type) via artery into only the right lobe of Deb’s liver. During this time, Deb’s liver will get normal blood flow to the liver via the veins (80% blood flow) while chemo medicine is administered via the artery (%20 blood flow). After completion of first treatment, the second treatment for Deb will be tentatively scheduled in approximately 1 month to treat her left kidney lobe.

Risks
We were told with this type of treatment that there are obvious risks to Deb including infection due to the needle insertion, allergic to the dye, rejection of chemo medicine used, and the most severe being total liver failure. With this said, Dr. Levy feels quite confident that Deb is healthy and strong enough for the treatment. Even with our heart's beating rapidly and could see the concern in Deb's face that I know was the same as mine, we both agreed that it was time to move forward with this treatment.

Post Treatment
The post-embo symptons that Deb can expect will consist primarily of pain, nausea, and fever with pain being the most common side effect because there is no longer a blood supply to the tumor. During her hospital recovery stay, Deb will have a patient controlled pain pump to manage her pain level. We were told to expect fever normally for up to a week after the treatment. Fatigue and loss of appetite are also common for two weeks. Deb should be able to resume normal activities within a week of treatment.

Monitoring Progress
Upon completion of both treatments, Deb will receive follow up CT scan to determine how much the tumors ultimately shrank.

I can see much relief in Deb (and me too) that we are moving forward with this treatment as any liver tumor shrinkage should improve Deb's quality of life and buy us more time till we get to what I call the "John Coffey" treatment. She is still doing good with warm spirits at the house but continues to get fatigued quite easily.

All for now and we are heading out on this beautiful, breezy 76 degree pre-fall day to spend some quality time with good friends for the Tennessee-Florida and Auburn-LSU SEC football games. Go Gators!

Love to all and KTS,

Rod and Deb

After all this time, you're still the one I love

Shania Twain

Happy Birthday Tommy

Never stop exploring your passions in this wonderful world we live.
Good luck on your movie contest and we are so proud of you!

All our love to you,
Mom, Dad, Taylor, Casey, and Teddy

Follow Up Call Tonight on Treatment Plan from Oncologist, Dr. Yaffe

Received a welcoming surprise call Sunday night from Dr. Yaffe and he wanted to pass along quick update on status of some of the research results for Deb’s treatment planning options.

1) Parathyroid Gland Surgery
Confirmed that only 1 of the 4 glands tested positive so Deb will be going forward with the surgery to remove most likely 3 of 4 parathyroid glands.

Next Steps
The original surgery was not scheduled until November and I will start the phone calls tomorrow to expedite ASAP. We are hoping this surgery will help address the lack of energy and tiredness that Deb is currently experiencing.

2) Bland versus Chemo Embolization
Dr. Yaffe is more in favor of chemoembolization versus bland embolization since it is used more for Pancreatic cancer. Was not in big favor of the hepatic artery pump due to not trouble free and ongoing maintenance.

Next Steps
As a result, Dr. Yaffe is currently in process of submitting the referral to Northside Hospital for Deb to receive the chemo embolization. We will not know yet how many treatments will be required until we discuss with the Radiologist at Northside when scheduled who may elect to break down into smaller multiple treatments if necessary.

Upon completion of the chemo embolization treatment(s), Deb’s chromogranin level will be tested to measure her progress. Dr. Yaffe is still waiting current chromogranin level test results to compare to results from Dr. Ahlgren visit in DC.

If chomogranin levels are still elevated, the following alternate treatment options will taken under consideration after further research of risks and side effects:

a) Interferon

Oral base chemo therapy treatment options for neuroendocrine tumor cancer

a) Temodar - 7 days on, 7 days off. Very expensive and will require approval from insurance

b) Thalidomide - Dose is daily. Requires special registration from the manufacturer who performs remote monitoring via phone. This is the medicine used in the 1960s with pregnant women which produced the very controversial “flipper babies”. As a result, this drug was put back on the shelf for over 30 years and is now used with certain cancer patients.

3) Echocardiogram
Although all of Deb’s tests have come back negative on heart and lungs, Dr. Yaffe would like to recommend a echocardiogram for Deb.

Next Steps
Instructed to contact referrals department to begin moving forward with the test.

4) Neuroendocrine / Men1 Genetic Screening
Dr. Yaffe has confirmed the genetic testing that Susan found information on (thanks Susan!). If tested and is abnormal for Deb, it would confirm her current condition and that it is inherited from her Dad.

Next Steps
Dr. Yaffe is in process of referral to NorthSide Hospital to receive the genetic test. In addition, we will also setup the tests for both Taylor and Tommy.

Deb had another good weekend of peaceful rest at the house doing what she has always loved in life and that is reading her books in her favorite nesting areas upstairs and early mornings on the porch before the heat kicks in. I am guilty that I did not get her out more for more exercise since this is what she needs. We will get out our walking shoes this week and hit the hood this week to continue to build her strength. Sleep well beautiful.

Love to all and KTS!

Rod

Prayers and strength to everyone in Galveston as a result of Ike's deadly devastation.

How could so much love be inside of you. You are the sunshine of my life
Stevie Wonder

Yaffe rhymes with Coffey

It was good day. Deb was able to finalize switch over to Oncologist, Dr. Yaffe in our follow up appointment today at Cumberland.

Quick Summary
Sandostatin daily treatments were stopped today at Dr. Yaffe’s recommendations based on how well Deb has adapted to the medicine. Yeah! We and especially Deb were so relieved to hear this news. Her monthly LAR injections will be 30mg and switched to every two weeks. This was based on recommendation from Dr. Ahlgren @ George Washington in DC.

Results from recent parathyroid ultrasound and nuclear medicine tests confirmed previous diagnosed thyroid nodule in neck. Will get follow up information from Dr. Lucarini for next step preparation for surgery.

Discussed chemo/bland embolization and hepatic pump treatment options documented in Dr. Ahlgren’s letter. He indicated that the hepatic pump is being used at Piedmont and is good to know that it could be administered locally if we go down that path. It was encouraging that Dr. Yaffe was cautiously open to pursuing these all as viable treatment options after he researches further and discusses with us more next week.

Discussed the microscopic surgery to remove pancreas tumor as recommended from Dr. Kim at Emory. Dr. Yaffe did not immediately understand the value of this surgery since Deb’s pancreas tumor size was much smaller and recommended that we focus on the liver first. More research in this area necessary.

Base on today’s appointment, we are delighted that Dr. Yaffe is on board with us in finalizing Deb’s winning strategy treatment options.

Deb continues to slowly build more strength daily now except for some fatigue in her legs and discomfort in her abdominal area. She is in good spirits and we will continue our walks to help build her strength back. I love to watch her sleep! Today was uplifting to Deb and was wonderful to witness that doctor- patient bond that is so important to her.

Dr. Yaffe, you are wonderful man and is so true what everyone says about you. You bring us a step closer in search for that “John Coffey” treatment.


Shalom and KTS!
Rod and Deb

We love your pictures beautiful Paige :)
All of Deb's little friends: Please keep your masterpiece pictures coming in.

Something special about you and me. Something special about our love..
Randy Newman

09.11.08

Emory University Consultation

Deb and I met with Dr. Kevin Kim at Emory University School of Medicine early Monday morning. He was able to go over medical records that I sent along with images that Lisa sent.
Dr. Kim appears to be quite tech savy and I was already impressed when I noticed dual 24" monitors in his office along with dual blackberries on his desk. Technology is king in the journey to conquering cancer!

Dr. Kim called me today to let me know that he completed review of Deb's diagnosis and treatment options with his staff. In summary, Dr. Kim indicated that if Deb were his patient, he would recommend the following:

1) Thyroid nodule - Neck
Because Deb was diagnosed with Primary HyperParathyroidism, Dr. Kim and staff agreed on removal of this nodule in her neck which could also possibly help stabilize Deb further. We have completed the parathyroid ultrasound test last week and nuclear medicine sestamibi test on Monday. We are waiting test results from Head/Neck surgeon, Dr. Lucarini who if determines tests are positive, will want to move forward with surgery to remove 3 of 4 parathyroid glands. Tentatively already scheduled for November timeframe and will try to expedite with the idea that it can help mitigate some of Deb's current symptons.

2) Pancreas / Kidney

From viewing Deb's ctscan images, Dr. Kim's team agreed that tumor in her pancreas most likely is small enough to be re-sected using microscopic surgery which means they go in thru a small incision and camera to remove the tumor. His opinion was that it was most likely a functioning tumor and causing high insulin levels in Deb's body. For surgical removal, he provided us list of local surgeons with this expertise at Emory if/when we go down that path. Because kidney contains small coritcal cyst, no further treatment recommendations for kidney were recommended at this time.

Medical Oncologists - Dr. John Kauh and Dr. David Lawson

Surgical Oncologists - Dr. David Kooly and Dr. Charles Staley

3) Liver
Dr. Kim confirmed that Deb's liver tumor is not resectable due to the size and should experience shrinkage well using a chemoembolization treatment. We were also able to get his experience with Emory's SIR-Spheres microspheres which is similar to Chemoembolization. If/when we pursue this treatment, he recommended the chemoembolization and indicated that further research is required to determine if there is any more treatment benefit with SIR-Spheres microspheres.

Overall wonderful visit with Dr. Kim and he has offered his treatment services to us if we are able to pursue at Emory.

Current Treatment(s)

1) First monthly Sandostatin injection received last Wednesday at Cumberland

2) Today marks end of 3rd of 4 week treatment of daily Sandostatin injections for Deb

3) Received call today from Cumberland that Dr. Brodeur has recommended change from monthly injection to every 2 weeks. Reason was not given and will find out tomorrow.

Next Steps
1) Follow up and Q/A Oncologist appointment tomorrow with Dr. Yaffe
2) Follow up call to MD Anderson, Chief Medical Director, Dr. Steve Sherman
3) Finalize/schedule date for Parathyroid Gland removal surgery with Dr. Lucarini
4) Research specialists, Dr. Phil Boudreaux and Dr. Lowell Anthony. Both these men have LONG Carcinoid histories and both are highly respected for their successful treatments. Thank you Carol-Anne for sharing these names with us and I owe you an email :)

Sincerest special thank you again to Dr. Kim. We really enjoyed meeting you and tremendously valued your expertise/treatment recommendations. And you too Lisa for emailing the specific images and help making this all happen!

Love to all and KTS!

Rod and Deb


You are the love, the great love of my life.
Carly Simon

Good bye and thank you Bonnie

Bonnie,

I know you would not have it any other way then to be with your daughter during these trying times but we cannot begin to thank you enough for your wonderful care of Deb in the last month.

We absolutely could not have gotten to where we are currently today with Deb without you. As you can witness in Deb's beautiful smile, your heart of gold was just the perfect dose of medicine that no one else can offer than a daughter's mom. We have been a great care giving team and think all the love and family has made all the difference in providing the best care possible. You have prepared us with much needed strength for Deb's next step in her journey.

Special thank you to Brynda for driving over to help bring Bonnie back to her peaceful Florida home this weekend.


Bonnie and Teddy, Buddies Forever :)

Have a safe trip home. We love you and KTS!
Rod, Taylor, Tommy, Casey, and Teddy

I love you and that's all I know.
Art Garfunkel

For Monday : Look forward to additional knowledge for breakfast in the morning with Dr. Kim appointment @ Emory.

Dave B. : Our hearts and prayers are with you for your cousin's medical condition in Texas. As hard as this is for anyone to go thru, it is heart breaking to see a child have to go thru this experience. Keep on running!

Hello Everyone

Hello everyone,

I know this message has been a long time coming. I want everyone to know that I am starting to feel better. I am no longer taking pain medication, adjusting to the medication I am taking, eating more, and am gaining back energy every day. This is because of all of you and your prayers, the loving care of my family, and having my dear mother with me every day taking care of me.

Also, my dear friends at Keheley, my dear friends in the neighborhood, my true blue friends that have been with our family forever, and of course my immediate and extended family. Most of all, my precious husband Rod. My Aunt Connie this weekend said that she had never seen a caregiver as incredible as him. I feel so loved, and treasured by my husband, without him, I truly could not do this.

Please keep the prayers coming and I will be in touch.

Love to all and KTS!

Debra

In search of John Coffey

We have had time to settle down and think about our treatment options after our visit to George Washington Medical Center. Last week, we had our follow up talk with Deb’s Oncologist, Dr. Brodeur about Dr. Alghren’s consultation letter. Our primary discussion was focused around when to move forward with the next treatment option which we think at this point is most likely chemoembolization. After going back and forth, Dr. Brodeur basically felt it was pre-mature to move forward with this treatment because 1) Deb’s current body strength level was not yet ready, 2) risk from side effects of the treatment, and 3) the treatment was only addressing the liver and not the rest of the body.
I was told by Dr. Brodeur to not think like a surgeon and that you have to look at the global perspective of what is going on in Deb’s body. He said it is common for people to want to feel like you are doing something by moving forward with some sort of treatment to eradicate the medical condition. His overall justification that the chemoembolization is not an option at this time is based on the fact that the treatment will only shrink approximately 30-60% of the liver tumor. At this point, you still have a significant tumor that you are left with in your body and now along with additional poison as a result of the chemo treatment.

At this point, Dr. Brodeur is recommending for Deb to maintain on her daily injections of the Sandostatin treatment and go to a monthly injection this Wednesday. He continued to state that he has patients that are on this medication for years and are also back to work.

Well, what I live by in life is TBV. Trust by verify. With full respect of Dr. Brodeur, we are still going to pursue 3rd and 4th opinions from both Emory and MD Anderson on treatment options. We need to understand more from other specialists that it is okay to take “a wait and see approach” or should be moving forward with a more aggressive treatment.

With all that said, I can tell you that Deb has done amazingly well on the Sandostatin treatment in the last week and a half. We have seen Deb go from daily pain medicine to no request for pain medicine for abdominal pains. Her alertness is nearly back to normal. The medicine is quite fascinating and I have learned from additional reading that it is used in patients who have tumor metastases in several areas of the body. Where the medicine is not aggressively shrinking Deb’s tumors, it is returning her back to a normal quality of life with significantly less abdominal pain. Deb is now getting to enjoy all the wonderful dishes being delivered by her school and our neighborhood. Her weight is slowly returning and we are beginning to get back to our walks to return her muscle mass that she lost in her legs and arms. You all will be so proud of how strong she has been for all she has been thru. What an amazing woman I am married to be hit with this bombshell in the last month and begin walking again in the neighborhood in short spurts this weekend. Deb strives to be able to help herself and reduce her dependencies on others including being excited this weekend to be able to give self injections of Sandostatin. Her Oncologist was also very excited to hear of how well she was doing and indicated that her body is accepting the medicine quite well. I agree but also have to say that the medicine combined with all the love from friends, neighbors, and family has made all the difference.

Where do we go from here?

For now, we are comfortable that the Sandostatin is buying us time in the short term to take a breather and let Deb get back to her near normal self so we can explore in more details the other treatment options.

Emory
Through good friend Jim H. in our neighborhood, we have been blessed to talk and setup a meeting with Director of Interventional Radiology, Dr. Kevin Kim. What small world. Our friend Lisa in DC already spoke highly of him and studied under him. We are tentatively scheduled for general treatment consultation a week from this Monday at Emory. Focus will be on treatment discussions/comparisons between Chemoembolization and a new similar treatment option at Emory called SIR-Spheres microspheres.

MD Anderson
Through our friends for life, the Swansons, Erik’s brother Stephen made some phone calls/emails to get us up the food chain to setup treatment consultation with Dr. Steven Sherman, Chair of Endocrine Neoplasia and HD. I am in process of setting this consultation up this week and not sure if that will be a trip to Texas or a conference call.

I am totally overwhelmed and realize that Deb’s network is growing beyond anything I could ever imagine. I am simply in awe and so grateful every day for how much you all are doing to reach out to help our Deb.

Deb had a great weekend with her entire family at our house. We celebrated birthdays for sister Susan, cousin Reed, and Tommy. I can tell you from observation, love from family and friends is wonderful medicine to Deb’s body. I saw so much joy and smiles in her this weekend that I have not seen in the last month.

We love you Mom and Dad. Please know that we are sending much love and support healing that we have bundled up to you Mom in preparation for your back surgery this month.

So who is John Coffey?
Watched the Green Mile movie this weekend and I forgot how powerful John Coffey’s character was in the movie including removing the terminal illness from one woman. I wish it were that easy but know that we will never stop looking for the John Coffey "take it back" treatment out there in this wonderful world we live in.

Love to all and KTS!
Rod and Deb

How sweet it is to be loved by you.
James Taylor