The colors of spring

This past week the weather was beautiful with temperatures reaching into the eighties. Everywhere I look there are splashes of color; purple wisteria, yellow daffodils, and white dogwood blossoms to name a few. I have really enjoyed watching the trees come to life this week as the buds have started to open, and everything is turning green, and I mean everything. Lots of pollen in the air leaving a greenish yellow film everywhere. Last weekend I finally put my bird feeder up opting for a spot near the bay window, so I could watch them from where I sit in the living room. It took the birds a few days to find it, and they are now happily munching on seeds. Well, I thought it was a good spot. Yesterday I moved the feeder to the side yard due to the unwanted bird #@*! on items in my front yard, mainly my car and the plastic lawn furniture. I hope this solves the problem. If not, the feeder will be moved again. Unfortunately, our wonderful spring weather has disappeared. Today will be rainy with temperatures in the mid thirties. It was nice while it lasted, and I'm looking forward to those eighty degree temperatures returning soon.

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.

A place for me

I've started this blog so I'd have a place for my thoughts and feelings as our family deals with kidney cancer. We have a caringbridge page for Dennis that's used to update our family and friends on his condition. If you want, you can visit his page by clicking here. I write updates about his health, his treatments, when he has scans, side effects, etc. Most times I don't include my true feelings because I don't want to use his site as place for me to whine, vent and complain. It's not about me, it's about Dennis. Also, I don't want our family and friends to worry about me due to something I write on his site, and I know there's a few who will. Honestly, I don't want to deal with the phone calls and prying questions which will result from me offering too much info.

At the moment we're still waiting for information about assistance for Votrient. The last we heard was talk of 50% or free. Uh, free please! We need to know soon since Dennis only has enough pills to last through Tuesday. He has labs Monday so I hope to hear something during the visit.

I finally talked with someone in HR Thursday afternoon. She knew I was upset since I was on the verge of tears, but thankfully I kept it together. She talked with someone from the insurance company but she didn't sound hopeful. Unfortunately, I probably wont hear anything different than what I already know. To make matters worse there's another kidney cancer drug that's on the tier 4 list, Afinitor. I'm so pissed off about this. If we can't get assistance for either Votrient or Afinitor, that's two drugs he wont get to take unless it's in a trial. Sutent is a tier 3 so I'm guessing that would be the next drug if we can't get assistance.

Sucks to learn you're underinsured!

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!