Hospice

Mom signed up for Hospice last Saturday. She is still doing well, but we wanted to get everything started. A nurse will come to the house every 2 weeks to start and will come as often as twice a week when necessary. They provide comfort care (drugs, oxygen and any necessary equipment including a wheel chair, walker or even a hospital bed). The woman on Saturday was really nice and Mom has already met a nurse and a social worker...both of whom she said were nice.
Eileen, Kathi and I are taking Mom to Yosemite 9/30 to 10/3. We're all going to Boston (plus Roni) after that. The tentative plans are John and Peggy's Oct 11-14, then the cape (Joe and Gerry) Oct 15th. The 16th we all fly to Augusta to see Ivy! Oh, and her parents (Sean and Megan) too.
Can't wait to see everyone.

Sept 5th Appointment results

Mom and Eileen saw Dr. Wang on Sept. 5th. The blood work shows improvement with her liver function numbers. The CT scan shows the lesions on the liver are bigger but the lesions on the lungs are smaller.

Mom is much better since she stopped taking the Nexavar. Her appetite is back and she feels like herself again. She has decided, with the doctor's approval, not to restart the Nexavar.

We will have Uncle Rich, Aunt Judy and Aunt Alice in town next week. Yosemite the first few days of October and hopefully Boston and Augusta, GA a week or so after that.

August 15th Appointment with Dr. Wang

Mom's visit to Dr Wang on Wed, August 15th (with Eileen)

Results from the blood work show that Mom's liver function numbers are out of range. This is a new development. Dr Wang feels the Nexavar may be to blame since the values changed so dramatically since the last time. He has taken her off the Nexavar for now and has ordered a new CT Scan so we can compare the liver to the original scan.
Mom's appetite had diminished which can lead to her feeling really tired. Her blood pressure is now too low so DR Wang lowered the dose of her blood pressure medicine back to the previous level.

We are hoping to get the CT scheduled right away and return to Dr Wang on Sept. 5th at 330pm

Kathi took Mom to KC from Aug 16th through Aug 20th to visit the family there. They had a great time. Spoke to Mom when she got back and she is feeling better. She has her appetite back!

First few weeks on the drugs

7/19/07 - Appointment with Dr. Wang (Kathi)

Mom told the doctor that she feels good. She has had some pain in her head but it doesn't last very long and it's not in the same place each time - doctor did not feel concerned. She also mentioned that her feet aren't bothering her. No other symptoms.

During his exam Dr. Wang noted her blood pressure was elevated 160/80 (one of the potential side effects on the medication) and recommended that she increase her high blood pressure medication. Dr. Lacey (general practitioner) wasn't in her office but Mom has called her to let her know of the change.

Dr. Wang did have a comment about the Nexavar - we were under the impression that she took the medication for 4 weeks and then was off for 2 weeks - Dr. Wang told us that she needs to be on it continuously. (This was confirmed with Mark Lynch. The other drug is 4 weeks/2 weeks.) We will get the refills on the Nexavar by calling the specialty pharmacy.

The next appointment with Dr. Wang is on August 15th at 2:45 but she will need to have a blood test done 2-3 days prior to the appointment. The blood test will check liver and kidney functions.

Starting the drugs soon

OK, we decided to go to a regular blog format so just keep checking the latest entries with the menu bar at right. Comment if you have questions.

Mom was originally prescribed Sutent by the doctor, but after talking with Mark Lynch and then talking to the doctor again, she will be taking Nexavar instead. After going through all of the red tape, she should be able to start taking it Tuesday (July 3rd) or Wednesday (July 4th). We’re hoping for few side effects, if any. It will be 4 weeks on and 2 weeks off.
Roni and Mary will be in town from the 5th of July until the 12th.

Note: Shout out to Mark Lynch for being such a valuable resource in this process. He has given us great advice and clinical studies but also told us to make the oncologist give us a rationale for treatment options. All our doctors have been great but not always eager to give us the hard truths of what we are facing. Mark has been our inside source and we really appreciate all his efforts and time.

Mom's doctors

Dr. Andrews - Urologist
624 W. Duarte Road
Ste. 203
Arcadia, CA 91007
626-446-8595

Dr. Alice Lacy - Primary Care
612 W. Duarte Road
Ste. 501
Arcadia, CA 91007
626-821-1112

Dr. Elias Tarakji - Gastroenterologist
488 Santa Clara Road
Ste. 103
Arcadia, CA 91007
His office 626-359-3330
Endoscopy Center 626-359-9555

Dr. Henry Wang - Oncologist
612 W. Duarte Road
Ste. 304
Arcadia, CA 91007
626-446-4461

Mom's new health blog

Upcoming appointments:

July 12th - Oncologist (Dr. Wang) 2:45

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June 21st - Consult with Dr. Wang. He had spoken with Dr. Andrews and everyone is in agreement that we won't do surgery. He says someone who doesn't do treatment (drugs) will live approximately 6-8 months. The treatment will help with 2-4 months. But there are 3 different kinds of drugs and he said when 1 stops working we can start another. He is starting her on Sutent first and we're trying to get all of the approvals, etc. She will hopefully start taking it in a few days. She will take it for 4 weeks and then have 2 weeks off. She will do this 3 times. The side effects are less than traditional chemo. We see the doctor again in 3 weeks just to see how she's doing on the medication, and she'll probably have another ct scan in 3-4 months to see how the drugs are working. She will also have periodic blood tests to check liver function, etc. She still feels fine.

June 18th - still haven't heard back from Dr. Andrews office. Just left another message.

June 14th - The cardiologist (Dr. Baruch) says Mom's heart is in great shape. He says he doesn't have to see her again unless she has any problems. He wants her to keep taking the medicine she's on right now. This afternoon we saw the urologist (Dr. Andrews). He says there are small nodules on her lungs. The bone scan only showed a spot on her rib cage and they really can't say if it's the cancer because that's a weird place for it to go. (Usually goes to the spine.) They thought maybe she had broken her ribs in the last 18 months or so, but she said no. He doesn't seem too worried about either of these. We told him right away about our concerns about the surgery and he actually agrees with us. He says the recovery is very hard and would not really buy us much time. He is going to call Dr. Wang (the oncologist) to discuss Mom's case and he (Dr. Andrews) will probably call Eileen tomorrow. We then will call Dr. Wang to set up an appointment to find out more about what to expect in the coming months and to start on the drugs. He did mention the fact that Mom is not in any pain is a good sign there might not be a lot of pain.

June 7th - Mom had her bone scan. I think we'll get results on the 14th.

June 6th - Mom had her lung ct. I assume Dr. Andrews will give us the results on the 14th.

June 5th - Mom had her Echo cardiogram. We'll get the results on the 14th.

June 4th - Dr. Wang - Oncologist (with Eileen and Pattie) Dr. Wang says there are spots on the lung from the original ct Mom had done, so it has spread to the lungs. (This was just a partial picture of the lungs and we're still scheduled to get the chest ct and bone scan to get a better idea.) He recommends taking out the kidney if Dr. Andrews thinks Mom is physically ok to have surgery. (They have to consider the heart problem as well...luckily she has an echo cardiogram tomorrow.) Dr. Wang confirmed that a liver biopsy is unnecessary. He clarified that the lesions from renal cancer that has metastasized to the liver are full of blood and the risk of bleeding is more than lesions from other types of cancer. The good news is, they now have some new treatments for kidney cancer. There are 3 different treatments (pill form) that will hopefully slow the progression. It's called molecular targeting agents. That is all that they can do. There are fewer side effects than with chemo. He wants to see her again 2-3 weeks after her surgery and we'll get a game plan at that time.
BTW, I never mentioned in any of these posts Mom feels fine and she has no symptoms. There are no nerve endings inside the liver or the kidneys which is how it progressed without any signs.

May 31st - Additional - In answer to a question regarding the mass on the kidney. Doctors normally won't do a biopsy of something on the kidney because the kidneys are hard to get to. In Mom's case they can tell by just looking at the ct and don't need a biopsy. They would just remove the whole kidney. (If that's what the oncologist recommends.) BTW, the urologist also confirmed only one kidney is affected and both kidneys are functioning normally. (The growth is on the tissue outside and kidney function happens in the center of the kidney.)

May 31st - Mom's liver biopsy was canceled. I just spoke with Dr. Tarakji who had spoken to the radiologist who would have done the procedure. The radiologist said from looking at the liver he's almost sure it is renal cancer that has metastasized to the liver. (Dr. Tarakji conferred). There is a risk of bleeding by doing the procedure and they think it's best to see the oncologist first and then decide whether Mom really needs the procedure or not.

May 30th - still waiting for referrals for bone scan and lung ct

May 25th Dr. Andrews - the Urologist (with Pattie)
Spoke with Ben Massey (physician's assistant). He took all of the history. Dr. Andrews told us that it is weird to have a mass on the kidney and spots on the liver. Generally, if renal cancer metastasizes, it goes to the 1) lungs, 2) bones or 3) brain (in that order). He says it may be 2 different cancers. They will know more when Mom gets a liver biopsy on Thursday. He gave us referrals for 2 more procedures. Another cat scan to see all of the lungs (the other one was focused on the abdomen and only showed the bottom of the lungs) and a bone scan. He said he will be working with the oncologist once all of the results are in.

May 24th Dr. Tarakji - the (with Eileen and Pattie)
Dr. Takakji gave us the results of the previous tests. When doing the endoscopy, they had to remove a very small polyp from Mom's stomach and that came back as cancer. They need to do more tests on it for additional info. He also told us about the tumor on Mom's kidney which they found with the cat scan. It is about 3 inches (or the size of a tennis ball). There are also spots on her liver which they had seen with the sonogram, but could see better with the cat scan. The colonoscopy came back normal. He gave us a referral for an oncologist.

May 22nd C Scan (with Matt)
May 18th Colonoscopy (with Matt)
May 16th Upper Endoscopy (with Matt)
May 14th Sonogram (Mom went by herself)