Wayne's Journey:

Spouse/Partner: Kidney Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 6 years ago, Male, Age: 64, Stage IV

  1. 1
    • Wayne
    • Experience with Kidney Cancer
    over 5 years ago
    Wayne's Avatar

    Decision Point

    Wayne, was diagnosed with stage 4, renal cell carcinoma (6/03/11) while being hospitalized for severe back pain. After reviewing the CT, the Dr. noted a 6.5 x 5.1 cm solid mass in the upper poles of the left kidney and multiple spots on his back which he felt was suspicious of RCC. We were flown to Kaiser Hospital in Honolulu where the mass was biopsied and diagnosed as Stage 4, Renal Cell Carcinoma which metastasized throughout the right ribs, thoracic and lumbar spine, sacrum and ribs. We were told that the mass was 80% clear cell carcinoma and 10% papillary or with papillary features. Wayne is 58 years old, 180 lbs., a healthy male and is a non smoker. He lives an active life style; working out, lifting weights, biking, swimming, and is self employed as an accomplished artist creating metal sculptures and the most amazing gates you’ve ever seen. On 06/08/11, his birthday, he was released from the Hospital and was given four choices of treatment to choose from; Sutent, Sorafenib, Pazopanib or weekly Torisel injections/drip. After researching our options, he chose Sutent and just completed cycle Four. It was a rough start and had to adapt swiftly. He received radiation to his lower back during the first cycle of oral chemo which reduced pain by 30%. By trial and error we learned many solutions and tricks to offset the evil side effects; taste changes, hand & foot, cramping, diarrhea, constipation, nausea, etc. 1. Regular tooth paste or mouthwash couldn’t be tolerated, but Biotene makes good tooth paste, mouthwash and chewing gum. Dr. prescribed “Magic Mouthwash” which helped the mouth sores (diphenhydramine, dexamethasone, nystatin, lidocaine) 2. If you have an iPhone/smart phone, the best free Ap for organizing all your Medications is Pillboxie. You can enter all meds, create the shapes and colors of pills, add details and notes, and best of all reminders of when they are due and check off when they have been taken. 3. Previcid twice a day really helped with the heartburn. Carafate worked great for the stomach but ask your doctor about not taking it within one hour of your other meds, can prevent other meds from penetrating. Miralax cocktail with Gatorade once or twice a day really helped with constipation. 4. Plain water made him sick to his stomach, but Gatorade, Vitamin Water, Apple Juice (low sugar) and soda water poured in to cranberry juice worked well for hydration. Jello, Pudding cups and applesauce were easily tolerated, eating very small amounts every 30 minutes. His favorite snacks were graham crackers, vanilla wafers, ginger snaps and animal crackers. Favorite substance foods to stay down were mac & cheese, oatmeal & cream of wheat and protein fruit smoothies made with yogurt and nondairy milk. Kagen (alkaline water) was highly recommended as a feel good to cancer patients but didn’t have the opportunity to try it due to limited access. 5. For the bathroom, baby wipes are mandatory to use in conjunction with toilet paper. Favorite brand for him was Target’s Up & Up, scented. I know scented is taboo but it makes him comfortable. For driving and running errands, we always carry toilet paper, baby wipes and trash bags in the event of any emergency. 6. This is more for the care taker, but starting a journal and taking vitals every day, notations of pain (1-10), good days, bad days and just about every detail I can think of. In the long run this will help discover patterns while on and off different treatments. Here’s one “Since Radiation (06/23/11) side effects of extreme cramping, diarrhea mixed with constipation, nausea, fatigue have appeared. It is difficult to know if these new symptoms are because of the Sutent building up or from the Radiation. The cramping has been very painful and is his biggest complaint. His back pain has subsided as of a few days ago and down by about 30%.” 99.5 98/110 wt. #164 lbs. 7. Apply for a Handicapped placard, a Dr.’s note is required and it is a life saver for running errands, Dr.’s appointments, outings, etc. Depending on your age, apply for your Social Security disability. It took two months after submitting application for checks to arrive. 8. Hand & Foot is helped by Bag Balm (find at your pharmacy, works great for chapped lips too) apply nightly to hands and feet, wrap in socks and pedicure mittens to soften skin. Professional manicures and pedicures are highly recommended to eliminate dead skin. 9. Fatigue, just go with it . . . rest and sleep heals. Get lots of movies and go with it. A new bed can work wonders, Wayne’s back could not tolerate the 10 year old mattress we’ve grown accustomed too. He chose a memory foam mattress that he loves! We keep a heating pad plugged in over the head board he can grab at any time for his tummy, and ice packs in the freezer which can be alternated. Towels underneath the mattress pad for those night sweats and extra blankets on standby for those chills 10. To date (12/01/11), Wayne has lost 22 pounds, (give and take), it is my goal to nurture him in healthy foods that feed the body, spirit and soul. So far I have gained 10 pounds and could use some advise. Different from all the side effects we have read about Sutent, Wayne felt better on his 4 weeks on, than his two weeks off, once we figured out the quirks. Every time he was off chemo, he had high fevers, felt sick, low blood pressure, felt faint, passed out and was hospitalized several times for an undetected infection. Fast forward to today’s date (12/01/11), Wayne had his 2nd bone scan and CT after 4th round of oral chemo, 4 weeks on 2 weeks off of Sutent. The findings detected multiple spots have spread to the lungs, lymph nodes, and new lesions to back bone and left lemur (which mentioned not excluding infection . It was recommended he stop Sutent and opt for a Clinical Trial here in Hawaii at Kaiser using Afinitor (approved by FDA for RCC) and Avastin (in stage 3 of clinical trial) and/or a chance of Plecebo (nothing but a saline solution). Wayne qualifies for the Trial however he needs to be 30 days Sutent free. He is currently experiencing intolerable pain and Radiation is recommended. To date, it is not likely he is in shape to make the required round trip flight to Honolulu every two weeks for the trial. Should he decides to partake in the 10 day treatment of Radiation to reduce his pain, he would not qualify for the clinical trial until 2 weeks after radiation. This would be 35 days without chemo treatment, which may accelerate the cancer growth. Should we opt for Clinical Trials, we are guaranteed that he would receive the regular dose of Afinitor (everolimus which he can get here, FDA approved) but not guaranteed he would get a Placebo or the Clinical Trial dose of Avastin. Lot’s of decisions to be made . . . Anyone out there in a similar situation or have been on this Trial? Or any comments on other choice of treatments; Axitinib, Afinitor, Nexavar? Avastin? Or ?????, For RCC? Mahalo, Maggie Brown,

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  2. 2
    • Wayne
    • Experience with Kidney Cancer
    over 5 years ago
    Wayne's Avatar

    Problem with doctor

    Oh No

    We just got back from radiology and the little cancer growth spotted 11/20/11 on his left femur was the tumor the size of an orange. He has lost so much weight I thought it was his bone sticking out. The Radiologist last week said that we shouldn’t be concerned about anything. He told me that I should not be reading reports because I will misunderstand them leading Wayne to think he is in more pain than he really is. Wayne’s Oncologist missed the report which I brought to his attention. He apologized, he couldn’t believe he missed it. It appears to me there are too many cooks in the kitchen and patients need to have a Case Manager that can oversee treatment. You have to go to your GP for pain management, an Oncologist for to give the patient choices of treatment, a radiologist who reads scans, Xrays with no history of the patient (he thought given the fact there was a titanium hip and rod that the tumor was a part of it) We go to the Radiologist today and he did not have access to any of Wayne’s medical records. I could of screamed. Okay, I feel better now that I have vented. Good news is he starts radiation tomorrow which will take care of the pain . . . it’s just sad that he had to go through two weeks of XXX and every time we called or visited were just given an increase in pain meds .. . Maggie for Wayne

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