tjrasMOM Posted April 20, 2009 Share Posted April 20, 2009 Hello all, Once again, it's been a while. The last time I posted was just when Mom was starting her new round of Carbo/Taxol/Avastin cocktail. Well, a LOT has gone on since that post.... She was supposed to have 5 cycles of it, however, "wonderful" Blue Cross denied her the Avastin. We have been fighting, along with her oncologist to get it approved, but they will NOT approve it. Said she doesn't qualify....her oncologist has been so upset & so frustrated. Blue Cross "oncologist on staff" has not returned ONE phone call that Mom's oncologist has made. So, she was given it the first appointment, but not since. Her last appointment for this cycle is next Thursday (4/23). And because of the financial hardship this all has started to place on her, her oncologist office has been submitting her information for financial assistance as well. Finally after 3 months of stress and anxiety, she has finally received two awesome letters....One from the maker of Avastin, saying the company will pay for her treatment 100%...and one from a financial assistance organization that has said they will pay her chemo co-pays AND they would reimburse her for the out-of-pocket co-pays she has had to pay since February. It's been the most stressful situation over the past 15 weeks. Her first chemo appointment came to $27,000!!! And the office asked for a $1500 co-pay THAT morning before they could start her chemo. So, I charged it on my CC. Because her policy has just started over, she was responsible for 30% of that appointment.......and because NOTHING ever makes sense with insurance companies, apparently it wasn't going to be applied to her annual deductible. Who knows why? And to this date, the $1500 I paid, has not been applied towards ANYTHING.....HUH? The hardest thing is that they just keep asking for money out of her pocket, without applying anything to her deductible and even though we know something is not right, we don't understand it enough to even argue with them!!!.....But my God, NO ONE should have to go through this when they have cancer. But it has been getting better. I mean, the easiest part of all this has been the chemo. Mom has not needed ONE blood transfusion, whereas, during her last chemo she was getting transfusions all the time. Her hair started to thin out after the 3rd week, but we didn't need to shave it until after her 2nd cycle! So, I guess she has a strong head of hair. LOL She wears it bald most of the time around the house and family. But wears cute hats when she goes out. Even wears a little wig under the hat sometimes. We leave for our annual Jamaica trip in 4 weeks. She will have 21 days to "recover" from the last chemo appointment. Which is fine because she's usually feeling 100% normal around day 13 or so. She's had very mild nausea with an increased amount of fatigue. Her biggest complaint has been her digestion. She feels so bloated around days 3-8. And lately her face has started to swell. I'm guessing this has to do with the amount of fluids being pumped into her. It goes away, but it's the worst in the mornings. To look at the positive, all the issues with finances has forced my mom to get very organized with her bills. A friend has taken ALL of her medical bills and put them all in an Excel spreadsheet. She's even gone to the bank to refinance and lower her mortgage. Things just seem to get very bad before they get better. But right now.....all we can think about is our trip to Jamaica. I don't know if I wrote about it here....but last year, while Mom was on Coumadin, she was thrown off her horse in Jamaica. (You know...Coumadin...the one that can cause internal bleeding if you're seriously injured??) When she hit the ground, she was out cold, laying on her stomach for about 5 minutes. I jumped from my own horse, ran towards her laying in a ditch. I was an absolute wreck, along with my daughters (6 & . My aunt (Mom's sister) had also been thrown from her horse, on the other side of the ditch. Apparently the horses started to race each other as we got closer to the end of our tour. We were on English saddles and there was nothing to hold on to. Thankfully we all had helmets. But they were each taken to the hospital (which is basically a third-world type clinic in the area we were in). They wanted to give Mom an injection for pain & I immediately stepped in and said, "No, she's fine." The nurses don't use the same precautions that they should use and I didn't want anything injected in her. The scariest part was when Mom did not know what had happened or where we were. It took about 15 minutes after she opened her eyes to remember what happened. When she first came to, with her head on my lap, she asked me, "Where are we?" I said, "We're in Jamaica Mom....everything is going to be ok.....you fell off your horse..." She said, through a giggle, "We're in JAMAICA???......" I said yes. She then asked how many days we had been there. I told her "eight". She then said, "S**t, and I can't remember it!" If you could find the humor in it, we definitely did. The story got funnier and funnier each time we told it. I even called Mom's other sister at home and explained that she should call Mom's oncologist to tell him what happened. When she called him, he said, "Ummmmm, well,.......not sure why you're calling me....she's already fallen off the horse......even AFTER I told her to behave....there's not much I can do from here." LOL. He LOVES my Mom's spirit and LOVES the fact that she has continued with her life. But he does lecture us here and there about "behaving". So, we have promised him that we will NOT go horseback riding this time.......(but we might still do the parasailing and river tubing since she didn't get hurt on THOSE last year!!!) HA HA Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted April 20, 2009 Author Share Posted April 20, 2009 I forgot one detail about the horse accident (and I apologize beforehand if anyone is offended at what WE find humor in....it's just how we get through it all).....when Mom and my aunt were thrown off their horses, many of the Jamaicans that were working in the farm area came running over to help. When we rolled Mom over, her port was pushed up into her skin above her chest. It was poking out a lot. The natives were freaking out because they thought it was a bone...they thought she had broken her collar bone and it was poking out her skin....I heard them whispering to each other and pointing to it.....finally I explained, "That's a little piece of metal under her skin....don't worry....it's not a bone..." Of course that sick & twisted part became funnier and funnier as we retold it. Those poor Jamaicans.....they didn't know WHAT to do. Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted April 20, 2009 Author Share Posted April 20, 2009 You asked for pics....well, this one's a little late, but I've just updated my profile with a pic of Mom & I from last year's trip to Jamaica. Quote Link to comment Share on other sites More sharing options...
recce101 Posted April 20, 2009 Share Posted April 20, 2009 You guys are the greatest — love you both!! I'm really glad you got the Avastin financing straightened out. It can definitely add some oomph (technical term) to Taxol/Carbo. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted April 20, 2009 Share Posted April 20, 2009 If anyone is offended by you and your family finding humor in an otherwise difficult and stressful situation, they are the ones who are sick. I'm sorry I have not been following your mom's story. I know about Genetech's drug replacement program and was actually a beneficiary myself. Most hospitals also have a patient rep that, if you qualify, you get assistance with the other bills. I had always thought that was only for people who lived at the poverty level but not true when it comes to cancer. My earliest infusions ran about $30,000 a pop every three weeks. They know the average person can't pay that. I am sorry for all the stress involved. I know, we went through it and sometimes it's worse than dealing with the cancer. I did Carbol/Taxol/Avastin six times, and Avastin maintenance for about eleven more infusions. I am eighteen months out from dx and have been NED since April 1, 2008. With your mom's attitude, tell her good luck and she'll do great. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted April 20, 2009 Share Posted April 20, 2009 Hi there. Well you guys have been through so much, both financially and medically but you have just kept on living life! Good for you! Have a most awesome return trip to Jamaica and behave the best you can! Sandra Quote Link to comment Share on other sites More sharing options...
kukla Posted April 21, 2009 Share Posted April 21, 2009 Great job getting the avastin and other drugs covered! Have a great time in Jamaica. Glenn and I eloped there! We chose the tubing trip instead of horseback riding. It was awesome and required no effort but to sit back and enjoy.... Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted June 2, 2009 Author Share Posted June 2, 2009 Mom and I are back from Jamaica. We had a great time. Even though hurricane season seems to be coming a bit early this year. We had a LOT of rain. But with Mom's 2 friends, my friend and lots of family over there....it was a blast! We just laughed and laughed. And yes, we did the tubing this time again...but decided to pass on the horseback riding! However, we did stop and visit the man who owns the horseback riding property. He was so relieved to see that we were fine! He said, "I would love to offer a free horseback riding tour...but I don't think I'm going to...." We all laughed! Mom wasn't able to get her last carbo/taxol before we left because her counts were too low. So she went almost 2 months without chemo. Just before we left for Jamaica, her eyebrows and eyelashes had fallen out. I think she had 2 eyelashes on her one eye when we arrived in Jamaica. She was not happy about this. We brought false lashes and drew on her eyebrows. So, for the fancy formal evening dinners, she was dressed up. But by the time we were heading home (11-day trip) her hair was all growing back. She had dark, bushy eyebrows coming in, a full line of eyelashes and a fuzzy head of dark brown / grey hair. We kept saying she looked like a tennis ball. LOL. But because she still needed to get that last dose of carbo/taxol...and because she needs to start the avastin, she had a very long appointment today. She received chemo from 8am-3pm. She received EVERYTHING.....carbo / taxol / avastin AND one other one (but I can't remember...it's not the regular chemo, it's one that builds up blood counts or something...geesh, my mind is blank right now). Because this is the best place to get honest information, aside from the risks of avastin, what are the side effects? Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 2, 2009 Share Posted June 2, 2009 I am so glad you guys had a great time on vacation!!!! Remember, we want lots of pics!!!! You are the second person this week that I have read about whose insurance company would not pay for Avastin. Maybe I am just lucky with Medical Mutual - I was on the Carbo/Taxol/Avastin for 6 cycles (which by the way cost 62,000 a pop) and then on Avastin alone for 7 months. Never had a problem with the insurance and my insurance pays for 100% of chemos. I can't understand why one insurance would pay and others won't for a recognized cancer drug. Not like its experimental or anything. Anyway, the important thing with Avastin is to watch out for severe headaches which could mean high blood pressure. Avastin is noted for causing that. I had to be put on BP meds and unfortunately, I have been off of Avastin for a year and a half but cannot come off the BP drugs. Other than that, for me, Avastin alone was a cake walk. And Mom's hair will grow back while on it!!! Wishing and hoping that the Avastin will be her magic ticket - tell her to continue that great attitude of hers. And personally, I love your sense of humor!!! But then, I have been told I can be a little twisted sometimes LOL!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 2, 2009 Share Posted June 2, 2009 Glad to hear you had a wonderful trip and that all are back safe and sound. I hope your mom's treatments go well. Sandra Quote Link to comment Share on other sites More sharing options...
fillise Posted June 2, 2009 Share Posted June 2, 2009 I am so glad you and your mom had a good time and Jamicia and didn't get on any horses! I think there is going to be a lot of push back on Avastin because it is so expensive. There have been some articles questioning whether the survival is worth the cost. I have noticed that NONE of the people who question this seem to have or be dealing with someone who has LC. I'm glad you finally got the help to get it for your mom! Susan Quote Link to comment Share on other sites More sharing options...
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