Good News!

Dennis remains stable! Back for labs in 6 weeks, and a CT scan in 3 months.

Life is good!

Honestly! We have enough to worry about!!!

I read an article today about counterfeit Avastin being distributed in the US. This is total BS!!

There are only 7 FDA approved Angiogenesis Inhibitor drugs for kidney cancer. Patients try the prescribed drug and have scans 2 or 3 months later to determine if the drug is effective. If there's shrinkage to the tumors, or they remain stable, the patient will continue on the drug. Once a drug stops working a new one will be prescribed, and the process starts all over again.

The last thing a cancer patient needs to worry about is whether their drug is a counterfeit, or not! How many people have taken this drug only to find out it didn't work? Was it because the drug was a counterfeit? I'm wondering how many people were affected by this since Avastin is used for other cancers, not just kidney cancer.

MRI Results

Dennis had his MRI at 8:30 this morning, and received the results by phone around 11am.

Great news! Everything looks good!

One less thing to worry about.

Drug no longer working?

Dennis is taking Votrient, with one of the side effects being hair color change. I've noticed his hair is starting to grow back in as its original color.

Hmm... I wonder if the drug is no longer working?

MRI

Last week Dennis had a few (6) headaches at the base of his skull on the right side, and blurry vision a few times in his left eye. I sent an email to his NP letting her know what was going on, and also suggested to include a brain scan the next time he has his CT. She responded indicating that he needs a MRI in the near future. I'm so thankful he is getting a MRI instead of a CT of the brain–I believe this will be much more accurate. Yesterday there was a message on the machine informing us that Dennis will have his MRI on January 11th. Hoping for good news!

Wishing everyone a Healthy New Year!

Scan Update

Great news--Dennis remains stable!

This latest report did not contain any measurements, except for the slight decrease in the fluid collection that has been there all along. I always compare the latest scan to the previous one to see exactly what the changes are. No such luck with this report. I'll have to conclude that stable, in this case, truly means stable. No growth, no reduction.

Dennis will continue taking Votrient, and return in 6 weeks for his labs.


For those interested I'll include the findings.

Chest:
Enlarged destructive lytic mass at T3 rib is again demonstrated on the right. Several sclerotic foci in the thoracic spine are again demonstrated. These appear overall similar. Bony expansion at T6 on the left is similar. A small right middle lobe nodule is stable. No new suspicious pulmonary nodules are present. There is no new significant axillary,  mediastinal, or hilar adenopathy.

Abdomen/Pelvis:
The liver is normal.
The gallbladder is normal in appearance.
The spleen is normal.
The pancreas is unremarkable.
The rt adrenal is normal. Nodularity  of the left adrenal gland is stable.

The rt kidney is within norrmal limits.

The left kidney has been removed. The left retroperitoneal low density fluid collection anterior to the left psoas muscle is again demonstrated.  It measures 5.3 x 4.4 cm, slightly decreased from prior exam of 5.6 x 4.8 cm but overall similar.

The pelvic viscera are unremarkable. There is no evidence for bowel obstruction. Previously seen thickening near the ileocecal valve is not present and likely represented under distention as described previously.

A fat containing lipoma in the left gluteus muscle is similar measuring 3 cm.

There is no significant abdominal or pelvic adenopathy.

Extensive bony metastatic disease in the lumbar spine and pelvis is overall similar.

Impression:
1. Stable appearence in diffuse osseous metastatic disease. Stable subcentimeter right lung pulmonary nodules.
2. Retroperitoneal fluid collection slightly decreased in size overall similar to prior exam, which may again represent a lymphocele.

Normal Labs

Dennis had his labs done yesterday and the results are normal. I did notice 2 items flagged with a "L". RBC was 4.40 (range 4.50-5.90), and Absolute Lymphs 1.1 (range 1.5-5.0). I'll have to check Google University to see what these numbers mean. More good news, Dennis has gained 6 pounds! It must have been all the brownies he ate while at his moms this past week.

His next CT scan will be on December 2, with the results, labs, and Zometa infusion on December 5th. I'm glad there will be one more scan this year since the start of my insurance year will change from March 1st to January 1st. Unfortunately, this means I'm screwed out of 2 months since I hit my out of pocket maximum. We will have an information session about our insurance today, and I have a few questions about our prescription drug plan. Needless to say my monthly insurance premium will be increasing AGAIN, along with my prescriptions and co-pays!

Insurance - it's a love / hate relationship!

2011 Coleman Classic

This year our Coleman Classic Golf Tournament was held on Sunday, September 25th. We had thirty-five golfers participate, and about fifty people who came out and purchased a plate of food for our cause. It was a great time, and we were lucky the weather cooperated. It didn't rain until 8:30 that evening, right when we were leaving. 


So, let's get to our final dollar amount. Drum roll please...


We raised $1600 for kidney cancer research!! How awesome is that?!

All proceeds from our fundraiser will be donated this week to the UNC Cancer Center, for Kidney Cancer Research.

Thanks to all who donated!

Scan Update

Good news. Dennis remains stable with a slight improvement (-.3 cm) in his third right rib and left pelvis, and his labs were normal. He will continue taking Votrient and go back in 4 weeks for lab work. Dennis was having issues with vomiting and diarrhea, so he had his medication reduced to 600 mg. I hope and pray the drug continues to work at a reduced dosage. It has only been a few weeks since this reduction, but so far so good. Dennis returns for lab work on August 1st.

Lab Reports

Dennis' labs were normal, and he will continue to take Votrient at full dose. After the awful side effects he had last weekend there was talk of possibly lowering his dosage. This was the first major episode of side effects since being on the medication. Dennis didn't feel too well on Saturday and skipped his meds Saturday night. He wasn't any better on Sunday, but did take his medication. Monday morning he couldn't eat, and couldn't keep water down. It was awful to see him so sick and not be able to help. He forced down water to stay hydrated, and by the end of the day was able to eat a little, very little. Dennis was able to eat more on Tuesday, and by Wednesday he was back to feeling "normal". The new "normal", you know, post cancer diagnosis normal. If Dennis has another episode like that, he's to call the nurse immediately.


Another area of concern is his eating. When he's on the meds food doesn't taste good and he doesn't eat enough. He also has a "full" feeling even when he's not full. He had the same issue with Nexevar. Dennis needs to pack on a few pounds. Well, more than a few. At this last checkup his weight was 148. Being sick right before his doctor visit didn't help, as I'm sure he lost 5 pounds over those few days! The nurse suggested making milkshakes using ensure or boost as the liquid. As long as it's chocolate, it shouldn't be a problem. Chocolate is his favorite food group!!!

Dennis' next CT scan, oncologist visit, and Zometa infusion will be in 6 weeks, on July 7th. We're certainly hoping and praying to hear more good news about shrinking spots!!!

As you enjoy this holiday weekend, please take the time to reflect on its true meaning. Memorial weekend is not about sales, a day off of work, or the start of summer. It's about those that made the ultimate sacrifice for our freedom.

Abstracts...

Sometimes I wonder about abstracts, or maybe I just don't understand them. A few days ago I read an abstract, Early experience with targeted therapy and dendritic cell vaccine in metastatic renal cell carcinoma after nephrectomy. Maybe it's just me, but I found the whole study questionable. For starters, the study only involved 2 male patients with metastatic RCC, and there was no mention as to where their metastatic disease was. How can only 2 people in a study be conclusive?


From the abstract: 
Sunitinib (50 mg per day) was given for 4 weeks, followed by radical nephrectomy after two weeks. DC vaccine was initiated immediately after surgery and repeated monthly. Sunitinib was restarted daily after 2 to 3 weeks of surgery with a 7-day interval every 4 weeks. 


Results: Follow-up in these patients at 9 and 10 months demonstrated a stable disease in both, as shown by imaging and clinical findings, with no further treatment required. 


Conclusion: The immune response obtained with DC vaccine combined with the antiangiogenic effect of sunitinib and the potential benefits of cytoreductive nephrectomy in advanced disease could represent a new option in the treatment of metastatic RCC. Further prospective trials are needed not only to elucidate the ideal dosing and schedule, but also to better define the proof-of-concept proposed in this report and its role in clinical practice.


The abstract never mentions the length of the study. How long were they on Sunitinib after the radical nephrectomy? It only mentions they had a 7 day break every 4 weeks. The DC vaccine was given monthly. For how many months? The follow-up was at 9 and 10 months. They both were stable, with no further treatment required. And...  Sorry, but this abstract is lacking information.


I love the last line in the conclusion. Further prospective trials are needed not only to elucidate the ideal dosing and schedule, but also to better define the proof-of-concept proposed in this report and its role in clinical practice. 


Obviously!!


Update: I found the original abstract, and it did answer a few of my questions. Here's the link to the original.

Scan Report

The April report showed shrinkage in a few areas. Chest: There is improvement of the RUL subpleural groundglass opacity, measuring 6 mm, previously 9 mm. The 4 mm RLL subpleural nodule was unchanged. Bones: The right third rib measures 4.8 cm x 2.5 cm, previously 5.3 cm x 3.4 cm. The left pelvic lesion measures 4 to 3 x 2.2, previously 4.1 cm x 3 cm. The right 3rd rib and left pelvic reference lesions exhibit interval decrease of its soft tissue tumor component. Impression: 1. Osseous metastatis disease in the right third rib and the left pelvis which shows improvement compared to prior study. 2. Interval improvement of RUL ground glass opacity.

Okay, so there is shrinkage as listed, BUT what about the other areas of bone. No news about the 6th rib and no news on T7 or T8. It's a small improvement, and I consider his cancer stable with this latest report. Honestly, I was hoping for a better response from this drug. Hopefully, the next report shows even more shrinkage!

The side effects from this drug are mild, but he still has issues with eating. Food doesn't taste good, and sometimes just the smell makes it were he doesn't want to eat. He had the same thing happen when he was on Nexavar. I just hope he doesn't lose as much weight as he did when he was on that drug.

Awesome...

Someone pinch me!  I can't believe the drug company will be suppling us the Votrient for free. Thank you to Rachel, the financial assistance gal at the hospital. Dr. Rathmell, who might have had some pull with the drug company, and GSK!!!! You're Awesome!!! The drug will arrive tomorrow, so Dennis will only miss one day.

Dennis had labs on Monday, which were normal, and a visit with Mary, our NP. Boy, was she mad when we told her what was going on. She mentioned something about gouging out someone's eyes at the insurance company, but I told her she had to get in line behind me! Patricia, one of the trial nurses we had when Dennis was first diagnosed, stopped by to say hello as well. She's soooo nice, and always makes time for us.

I'm still waiting to hear about what happened with my insurance. We were offered two plans - gold and silver. We were told the gold plan was the same coverage we had. It's bad enough the deductible went up, and the cost increased about $100 a month, but to find out it didn't cover a drug anymore just about put me over the edge. Kathy from HR is doing her best to find out what happened, and has CC me on the emails to the insurance company. I hope we hear something soon, and that no one else has to go through this.

It's always something!!!

Tuesday night I received a phone call from the specialty pharmacy billing department. They called to question my cost of the next shipment of Votrient, which would be $6059.18. My calendar year benefits were just renewed in March so I thought maybe it had not gone through yet. My plan is 10/40/60 so for the last two months I've only had to pay $60 for each refill of Votrient. We put the drug on hold until I could see what was going on with the insurance because if they send it I'm responsible for the full price on the bill. After I got off the phone I looked up my benefits on line and saw this:

Specialty Pharmacy Drugs: Your co-payment is 100% of the medications total cost.

I guess this applies to tier 4 drugs, since Votrient is on that list. It would have been nice to know this information. We were told the insurance would be the same as what we had. Apparently it's not! I guess the plan should have read 10/40/60/We're not paying for that one. To make matters worse I have a $100 deductible and they added that onto the cost. Excuse me! How about adding that to something you'll actually cover. I did send an email to HR asking if they recalled any information about this change in our prescription plan.

Anyhow, I went on line and downloaded the GSK co-pay help form and faxed it along with my 2010 tax return yesterday. I should hear something today about what kind of help we can receive.

It's always something!

Getting up to speed

Awesome game! UNC kicked Dukes butt 81 - 67 and won the ACC regular season title!! Woooo, hooo!

OK, back to Dennis' cancer journey...

On June 17, 2009 Dennis had a follow-up with Dr. Esther, and a consultation with Dr. Rosenmen to discuss having radiation to his femur. Well, they had an opening and started radiation that day. The following day we met with Dr. Rathmell and discussed how Dennis will proceed with treatment. Since Dennis was having radiation he had to delay the start of his systemic treatment, Nexavar, until after the radiation was complete. Also, after his last radiation treatment he will start his first intravenous infusion of Zometa. Zometa is a bisphosphonate that is used to reduce or delay complications from bone metastases or bone lesions.

June 25th was the last radiation treatment, and the first Zometa infusion. All was well until the next day...
We were leaving for New York and Dennis was sick. The Zometa gave him flu like symptoms, and somehow he pinched a nerve in his leg causing him a lot of pain. He was absolutely miserable. We're talking capital M miserable. It was so bad that I told him he needed to not make everyone else miserable for the 12+ hour ride. He ate pain pills like they were candy, and slept most of the trip. Thank you Lord!!

Dennis started Nexavar on July 6th. My insurance at the time was 30/70 and we still would not be able to afford the cost of the medication. I wrote a hardship letter and we were accepted to receive the Nexavar paying only 5% of the 30% I would normally have had to pay. I was floored by the cost of the cancer drug. I can't imagine having to decline treatment because you can't afford it. Thank God some drug companies offer no cost, or a reduced cost of their drugs. I have no idea how many patients are accepted into these programs, but at least for some it's an option and there's hope. Dennis had a few side effects from the drug; High blood pressure, weight loss, diarrhea, and tender feet. He was very lucky to not get HFS. Hand Foot Syndrome (HFS) is when you develop blisters and sores on your hands and feet. I've read about others having this, and to the extreme. Some couldn't even walk it was so bad.

Dennis continued having CT scans, and a Zometa infusion every 2 months. He also had another bone scan in August. All reports came back stable. He continued taking Nexavar until about the 3rd week in February of 2010. The medication was stopped due to his hernia surgery scheduled for March 1st. The hernia surgery went well, he healed nicely, and after his visit with the oncologist on March 22, 2010 he was aloud a hiatus from the systemic treatment. Taking a break from treatment was needed. Dennis lost quite a bit of weight while on the drug, and honestly, he looked awful. That night I read over his report and saw the T8 was stable in appearance. WHAT!!! This is why I ask for the reports, so I can go over them at home and compare the information from the previous reports. I can't stress enough how important it is to ask for copies of the reports. Of course the T8 was not mentioned on any other scan so I questioned it. The Dr. went back through Dennis' scans and did find the small spot on his vertebra and explained that some spots are so small that not every radiologist points out every spot when they write their findings.

The next scheduled CT in May included having his head scanned. He had a few really bad headaches, and of course the first thing I thought was it had spread to his brain. It's amazing with even the smallest ache and pain my mind thinks the worst. The scan revealed he does in fact have a brain, and it appeared normal. Are you sure? Awesome news! One less thing to worry about. No spread to his brain. He also had another bone scan with the results being stable. He was aloud to continue his hiatus from systemic treatment.

Dennis' July scan revealed another spot on his vertebra, this one at T7. It was listed as increased in size from prior study, but in the impression area it was listed as new. ??  Dennis was also having increased pain in one of bone mets. It was recommended that he have radiation to that area. While having radiation to the rib, the radiologist also zapped the T7 spot even though it wasn't bothering him. The radiation worked on the rib pain.

The September scan showed slight growth in his bone mets and in the lung mets. The growth was in millimeters and Dennis asked if he could continue to stay off the meds. The Dr. agreed, and Dennis was allowed to extend his hiatus for another 2 months.

December's scan showed more growth. The report impression was: 1. Interval development of innumerable new round densities throughout the axial skeleton which represent progression of osseous metastatic disease. Focal masses in the left pelvis and right anterior third rib have shown mild interval growth. 2. Minimal increased size of right upper lobe and right lower lobe nodules. Dr. Rathmell discussed Votrient  (pazopanib) as the next treatment drug for Dennis. Of course he was thrilled to start treatment again, NOT. Since it was deer season Dennis decided to start the drug in January. He was afraid of the side effects, so wanted to wait until the season ended. He started Votrient on January 15th. So far the side effects have been mild compared to Nexavar. His blood pressure increased so he went back on his second BP med, his hair is starting to come in white, and he has had vomiting. Although, he has now started to take anti nausea medication when he takes the Votrient, and that seems to be working.

On February 14th he went and had labs done, and had his infusion of Zometa. We met with a NP who was very nice. Dennis and I really liked her, and we will see her again on March 14th when he has his labs done again. We were lucky to get the Zen infusion area. It's the area that has less traffic and its very quiet.

We certainly hope this drug will shrink the tumors and help with the bone mets, too. Dennis has his next scan in April, and we're hoping for an awesome report!

Well, you're up to speed on the cancer journey...

The start of our cancer journey

My husband, Dennis, was diagnosed with kidney cancer on April 3, 2009. Months before he would sneeze, grab ahold of his ribs, and wince. I asked what was wrong and he kept replying that he thought he had cracked ribs, although he could not remember doing anything that would cause cracked ribs. A few weeks later the pain started to ease up so we thought whatever was going on was healing. About a month later Dennis was kicking/pushing snow out of the back of his truck and thought he pulled a groin muscle. At this same time the pain in his ribs returned. A few days later Dennis comes into the bedroom, pulls up his shirt and shows me a bump on his left side. Hmm... that's not normal. You need to see a doctor right away.

Dennis saw his doctor and she sent him to have a chest x-ray. The radiology report indicated a large, rounded soft tissue opacity in the right lateral midlung, with an approximate diameter of 6cm. This opacity is adjacent to the lateral chest wall on the right, and overlies the posterior right fifth through seventh ribs. This opacity is not appreciated on the lateral view. There is no evidence of a rib fracture or osseous rib lesion. The left lung is clear. There is no evidence of an effusion or pneumothorax. Cardiomediastinal structures are within normal limits.

IMPRESSION: Large, approximately 6 cm soft tissue opacity within the right lateral midlung suspicius for a neoplasm. Correlation with CT of the chest is recommended.

The only opening the hospital had for a CT scan was that night but Dennis had to work, so they scheduled a CT chest w/contrast for the next morning.

The report from the April 3, 2009 CT scan.
IMPRESSION:
1. Large exophytic left renal mass (6 cm), incompletely visualized, is consistent  with renal carcinoma.
2. Expansile right third rib mass, most consistent with metastatic disease.
3. Indeterminate pulmonary nodules, which could reflect metastatic disease.

Dennis called me at work and gave me the news. He was choked up when he told me, and I hated that I wasn't there when he heard the news. After that, the day was a blur. I honestly don't know how I kept it together.

On April 9, Dennis had another scan, a CT of the abdomen w/ contrast. We also had an appointment with Dennis' urologist, Dr Nielsen, and his oncologist, Dr. Rathmell to discuss the radiology reports and the available options. The recommendation was to have a laparoscopic nephrectomy. We were also presented the option of a clinical trial of sorafenib for 5 weeks before the nephrectomy. Dennis entered the clinical trial and was scheduled for a PET/CT, and a whole body bone scan.

The following day Dennis had the PET/CT. The day didn't start off very well. He was poked way too many times as they tried to find a vein. He also had to wait an extra hour before they could start since he had milk in his coffee, a big NO, NO. The only new information from the PET was a hypermetabolic focus involving lateral left 6th rib. Unfortunately, the day didn't end well either. Dennis found out he was allergic to the contrast. His hands started to blister and by the next day he couldn't stop itching. I felt so bad for him.

Around April 12th Dennis started the clinical trial of sorafenib. The trial was to evaluate shrinkage before surgery. Dennis tolerated the meds well, and he could feel them working. All his spots were sore for a few days.

On April 17, Dennis had a whole body bone scan. We were starting to feel like regulars in the scan area of the hospital, and the café as well. At least we weren't on a first name basis with anyone. You know you're spending too much time at the hospital if they shout your name when you walk in. Anyhow, here's the findings of the bone scan using the PET/CT 4/10 and the CT chest 4/3 for comparison.

There is focal uptake in the right 3rd rib, corresponding to osseous findings on the CT of the chest and worrisome for osseous metastatic involvement. There is a subtle, elongated focus of increased radiotracer uptake along the anterior aspect of the fourth right rib, which is not visualized on CT, but suspicious for metastatic involvement. There is also  increased uptake within the 6th left lateral rib, corresponding to findings on PRT/CT and worrisome for metastatic involvement. Within the pelvis, there is increased radiotracer uptake within the left sacroiliac joint and the right proximal femur. No CT or PET/CT correlation. The areas are suspicious for metastatic involvement.

Good grief, more bone mets!! At least we know where all the pain was coming from. What he thought was a pulled muscle in the groin was really pain from the femur. What, another scan? Dennis went for a AP+LAT of the right femur on April 20th. By now with all the scans I'm surprised he isn't glowing green!! The findings were a 11.4 x 3.5 cm lytic lesion seen in the proximal right femur, concerning for metastatic involvement, and worrisome for impending fracture.

Ok, it's April and turkey season. Dennis is out walking for miles unaware that his femur is close to breaking. At his next appointment he mentioned how much walking he was doing and his oncologist then told him of the dangers along with setting up an appointment with Dr Esther, an orthopedic oncologist. Hmm... would have been nice to know that little tid bit of info earlier, don't you think?

On April 24th we met with Dr Esther and went over the planned surgery. Dennis was to have a steel rod  put in along with having endovascular surgery the day before to cut off the blood supply to the tumor in the femur. After looking at the x-ray of the femur we were amazed it didn't break. He really was lucky considering he fell a few times while out hunting, and stepped into a deep hole that actually jarred his leg. Dennis had his bionic leg surgery on April 30th, and was released 3 or 4 days later. He still has some pain were the screws were put into the hip, but he deals with it.

Dennis had his laparoscopic nephrectomy on May 18th. His whole family came down from New York. His mom, brother, sister, and 2 nieces. All went well with his surgery and he was able to leave in a few days. His incisions healed nicely, and he was getting around pretty well in a few weeks.  Soon after his family left his cousin Pete came down for his treatments at Duke. Pete had Glioblastoma Multiforme Grade 4, and unfortunately lost his battle Sept. 13, 2009. Cancer Sucks!

Before the nephrectomy  Dennis had another scan to see if the sorafenib worked on shrinking the tumor. It did! The tumor shrank a little more than 1 cm, and he wasn't even on it for very long due to the unexpected surgery on his femur.

At the June follow-up with his oncologist it was determined that since we knew the Nexavar/sorafenib worked Dennis would continue taking it, and have scans every 2 months. We also received a copy of the pathology report.

Renal Cell Carcinoma, Clear Cell Type
Fuhrman Grade 2
T1b, Nx, M1

Well, that's enough for tonight. I've got a UNC-Duke game to watch! Go Tar Heels!