 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Breast Cancer / April 2007Update
Time for an update since it looks like there's a treatment change about to happen for us :) Deborah took two weeks off chemo for our trip to Texas last month - her markers are still low but they always have been. Last test right after we got back from vacation last month showed her CA 15-3 had dropped a couple tenths of a point. Still around 40-something. Perfectly acceptable. The day after Tykerb was approved by the FDA I called Dr. Smiley. We talked for some time and he expressed concern that the two weeks we took off chemo probably didn't do Deborah any favors. I mentioned quality of life and that in the grand scheme of things two weeks probably doesn't mean a whole lot. We talked about Tykerb and the idea that since my insurance company requires a 25% copay for prescriptions the $700 or so a month this was gonna cost us might be a little tough to do. Dr. Smiley was sympathetic, offered some options and we rang off. Last week's test showed Deborah's markers have doubled in the last three weeks (they're still below 100 but just barely - Dr. Smiley watches them really closely) and tells Deborah he wants one more blood test before we decide to switch to Xeloda + Tykerb. The people from GlaxoSmithKline are supposed to meet with Dr. Smiley and his staff tomorrow and it looks like a treatment change is imminent ;-) I did find a financial loophole, though. My insurance company allows for mail-order scripts and a 90-day supply of brand name meds costs only $35 so we've pretty much got that one covered. GSK has a program for folks who have no health insurance and make less than 5x the national poverty line ($68k for a family of two) so they can get Tykerb for free, but we have health insurance and make a tiny bit more than the financial cutoff so no assistance is available there. I guess they've gotta draw the line somewhere ;-) Anyway, I'm prepared to fight the good fight with the insurance company but I really don't think there will be a fight. With the mail order prescription plan everything I don't pay is paid by my employer, and my employer is the federal government and Dubya has lotsa money. This will be fine. Life is good. Deborah has been Stage IV for almost eight damn years. If that's not a miracle I don't know what is. I'm tired but not nearly as tired as she is. Life is still good. hugs to all -  Signatureallan we don't see things as they are, we see them as we are. -- Anais Nin > Time for an update since it looks like there's a treatment change > about to happen for us :) Thanks for the update, Allan. It means we don't have to ask :-) > Deborah took two weeks off chemo for our trip to Texas last month - ... > The day after Tykerb was approved by the FDA I called Dr. Smiley. We > talked for some time and he expressed concern that the two weeks we > took off chemo probably didn't do Deborah any favors. I mentioned > quality of life ... Well done you. Sometimes the best doctors don't understand that their patients want to enjoy life as well as, or even instead of prolonging it. > Life is good. Deborah has been Stage IV for almost eight damn years. > If that's not a miracle I don't know what is. It is, what's more, it's a miracle which will encourage others. > I'm tired but not nearly as tired as she is. Life is still good. It is VERY good. Hugs to both of you, Mary >Life is good. Deborah has been Stage IV for > almost eight damn years. If that's not a > miracle I don't know what is. Wow! The "miracle" is that you, two, found each other in this life! Deborah is so fortunate to have a hubby who will help her fight this horrendous battle and you are so lucky to have a wife who has the courage to keep on battling it out! You both are such fantastic proof of what for "better or worse" really means in those marriage vows. What an inspiration of hope your posts are to read, Allan. Thank you for being there for all of us who don't have our own partners to fight for us. I, especially, learn so much from your posts (and Tim's and all the kind people on here who share with us). Bea 'NO FORWARDS OR SPAM, PLEASE" >What an inspiration of hope your posts are to read, Allan. Thank you >for being there for all of us who don't have our own partners to fight >for us. I, especially, learn so much from your posts (and Tim's and all >the kind people on here who share with us). I second that! SignatureIt's easier to get forgiveness than permission. - Banksy May God bless both you and Debra and give you the strength to keep up this fight! Tammy >>What an inspiration of hope your posts are to read, Allan. Thank you >>for being there for all of us who don't have our own partners to fight >>for us. I, especially, learn so much from your posts (and Tim's and all >>the kind people on here who share with us). > > I second that! Hi, Allan (and Deb-by-proxy), > Time for an update since it looks like there's a treatment change > about to happen for us :) Thanks for the update. I hope the new regimen works out well, both for effectiveness and minimal side effects. Sad, though, that it's necessary to fight the bureaucracy as well as the disease. > Life is good. Deborah has been Stage IV for almost eight damn years. > If that's not a miracle I don't know what is. You betcha. Best wishes to both of you, Ann T. Remove 'dontsendspam' from address to reply by email Hi Allan, Sending along my best wishes for Deborah and you as you begin another drug. Fingers crossed for a great response to the medication, and minimal side effects. Let us know how it goes, ok? Barb And yet another update - this one on acquiring expensive drugs ;-) GlaxoSmithKline has been more than helpful getting us the things we need to switch treatments. After I got off the phone with them last week they called Deborah and also called Dr. Smiley's office. They have a program called 'Tykerb Cares' where they assist you in finding the drug at the lowest possible cost. So we filled out the forms and are waiting for Dr, Smiley to write the scripts, which probably won't happen for a couple of weeks. And the good news? We did find a way to pay for this stuff - turned out better than anybody thought it would. Of course we don't have the drugs in hand yet but my insurance company offers a mail-order pharmacy where you can get a 90-day supply of brand name drugs for a $35 copay. Tykerb and both strengths of Xeloda are on the mail-order pharmacy's formulary. Tykerb wasn't as of last week but it was yesterday ;-) We've used the mail order pharmacy for Celebrex and Arimidex before and it works pretty well. GSK is requiring a MUGA scan before we switch treatments but that should come out fine. I learned some other stuff. Medicare part B will cover Xeloda but there's a 20% copay - around $200 a month for most folks. As I mentioned earlier GSK has programs available for people who need Tykerb, have no prescription coverage and make less than 5x the federal poverty level (which is almost $70k for a family of two). There's help out there and things are looking good ;-) If anybody else is getting ready to do Tykerb + Xeloda and thinks they may have trouble paying for the meds, help is available. > ....If anybody else is getting ready to do Tykerb + Xeloda and thinks they > may have trouble paying for the meds, help is available. --------------- I looked up Xeloda, and except for being a pill rather than an IV, it sounds like a standard chemo drug rather than a "targeted" treatment. I'm going by the side effects that are listed--hair loss, hand & foot syndrome, mouth sores, constipation--which are like what I had on Adriamycin & Cytoxin, my first chemo. These were pretty awful. Why does Tykerb have to be taken with Xeloda, specifically? Eva >Why does Tykerb have to be taken with >Xeloda, specifically? I can't say, other than that's the application that was approved by the FDA. Clinical trials are still ongoing - perhaps there's some synergy between Tykerb and Xeloda that makes them work better than either drug does separately - kinda like Herceptin and Navelbine? Still guessing here, but Tykerb is only approved for folks for whom Herceptin is ineffective, so that would mean (at least in the Colonies) that the person had already had AC, a taxane (Taxol, Taxotere or Abraxane) and Herceptin + Navelbine. I'm not an oncologist but the next course after that would most likely be either Gemzar or Xeloda and it's kind of a coin toss which one you'd try next. Like I said, just guessing. Oncologists can prescribe Tykerb off-label, but I think it may be awhile before we see that. Signatureallan we don't see things as they are, we see them as we are. -- Anais Nin Deborah got a call from the Caremark people yesterday - the mail order prescription guys that service our health insurance company. I was a bit impressed with the whole thing - the pharmacist called her, said hers was the first Tykerb prescription they'd received and that he wanted to make sure she knew how to take the stuff. Told her to take the pills all at once either two hours before or one hour after a meal and to avoid grapefruit products (this is in the prescribing instructions already). The pharmacist asked when she needed the drugs - she said that she has a MUGA scan on Monday and that we expected to start on Wednesday. He said he'd insure the prescription arrived by next Tuesday even if he had to overnight it. The pharmacist said they have pharmacists on staff 24/7 to answer questions and gave her his personal work number as he was interested in this treatment. Can't help but be a little impressed - I've never had this kind of service out of our insurance company and the price is right. $35 for a 90-day supply. We're still working on getting a break on Xeloda but it looks like that's gonna be doable too. hugs to all - > Deborah got a call from the Caremark people yesterday - the mail order > prescription guys that service our health insurance company. [quoted text clipped - 17 lines] > a 90-day supply. We're still working on getting a break on Xeloda but > it looks like that's gonna be doable too. That service Is good, we take it for granted that pharmacists here give full details for any new medication when it's collected. Although that might only be true of the ones we, the Fishers, use ... Every patient and the medication history is computerised so the pharmacist knows what's what. Recently Spouse had an appliance prescribed for him, it wasn't available from the pharmacist except with a wait so he sent the script to the maker who sent it by return and telephoned to talk to him about its use. It gives one confidence in the supplier or pharmacist and the system :-) Mary > hugs to all - >Deborah got a call from the Caremark people > yesterday - the mail order prescription guys > that service our health insurance company. Can you please advise if one has to be a part of the Blue Cross/Blue Shield program to use Caremark? Sounds like you have a winner here but we are not offered Caremark with the Medicare Advantage plan we use. We have some "really" expensive copays and I was wowed by what you only had to pay for that expensive new drug. You are so very fortunate! I am happy for you. Bea 'NO FORWARDS OR SPAM, PLEASE" >Can you please advise if one has to be a part of the Blue Cross/Blue >Shield program to use Caremark? Sounds like you have a winner here but >we are not offered Caremark with the Medicare Advantage plan we use. We >have some "really" expensive copays and I was wowed by what you only had >to pay for that expensive new drug. You are so very fortunate! I am >happy for you. Hi, Bea - Caremark is a prescription provider for several insurance companies. Can't say what you have available with your Medicare Advantage plan but I will say that GlaxoSmithKline has set up a program called Tykerb Cares to help folks find the drug at the lowest possible price. You can find them on the web at http://www.tykerb.com/tykerbcares.html or call them at 1-866-4-Tykerb or 1-866-489-5372. I hate trying to figure out the numbers on the damn telephone keypad ;-) They've been extremely helpful and can find low- or no-cost options for Tykerb depending on what resources you have available. There are several specialty pharmacies dispensing Tykerb - such as * Accredo Health Group, Inc * Advanced Care Scripts * Biologics, Inc. * Bioscrip® * Caremark * CuraScript * ivpcare * McKesson Specialty * Medmark® * Option Care * PharmaCare * US Bioservices * US Oncology Also, if the Medicare Advantage plan you have doesn't do what you want you can switch plans during the open enrollment period every year - it runs from November 15th to the end of the year. Also, I know that GSK is dispensing Tykerb at no charge to folks who meet their financial guidelines - and from what I read they were being pretty darned generous. Good luck! Signatureallan we don't see things as they are, we see them as we are. -- Anais Nin >Caremark is a prescription provider for several > insurance companies. Thank you so much for providing all that information, Allan. I do hope you don't mind but I copied the post and printed it out so I could save it. The information you were so kind to share is too valuable for it to get lost to me if I need it in the future. With this disease, one never knows what tomorrow holds, and we have to be as best prepared as we can. Always grateful and thankful to you for your help, Bea 'NO FORWARDS OR SPAM, PLEASE" >Thank you so much for providing all that information, Allan. I do hope >you don't mind but I copied the post and printed it out so I could save [quoted text clipped - 3 lines] > >Always grateful and thankful to you for your help, You're more than welcome, Bea. If there's anything I can do just holler ;-) Signatureallan we don't see things as they are, we see them as we are. -- Anais Nin > >Caremark is a prescription provider for several >> insurance companies. [quoted text clipped - 10 lines] > > 'NO FORWARDS OR SPAM, PLEASE" Your prescription plan if you are employed is picked by your employer. For example, I could have Blue Cross and have Medco for prescriptions and you could have Blue Cross and have Caremark. To complicate the process the companies can change providers annually. So confusing.... Alex > Deborah got a call from the Caremark people yesterday - the mail order > prescription guys that service our health insurance company. > > I was a bit impressed with the whole thing - <snip> Good to know - I'm with Caremark, too. Now, here's hoping the Tykerb does its magic tricks for Deb so you have a good tale to tell that pharmacist! Best to both of you, Ann T. And yet another update... A 30-day supply of Tykerb arrived via overnight delivery yesterday. Bright orange pills and somehow Caremark waived the $35 copay so they were free. Not sure whether GSK strongarmed someone or what, but we got a letter from Tykerb Cares last Saturday saying that Caremark wasn't charging us for the prescription - and there was no bill enclosed with the drugs, as is Caremark's habit. Amazing. That's half the battle won. Deborah is to see Dr. Smiley this morning and get a script for Xeloda. We'd asked his office to do the same mail-order thing but somehow that fell through the cracks. We'll see if we can get that resolved today and the drugs expedited. Dosing will be interesting. Tykerb has to be taken all at once either two hours before or one hour after a meal. Xeloda gets split into two doses and has to be taken with food. Guess it's still better than going to the doctor's office and getting punctured ;-) So far, so good ;-) > And yet another update... > [quoted text clipped - 4 lines] > wasn't charging us for the prescription - and there was no bill > enclosed with the drugs, as is Caremark's habit. Amazing. Don't question a good thing.... my husband had a prescription filled and the Co-pay was $100. > That's half the battle won. Deborah is to see Dr. Smiley this morning > and get a script for Xeloda. We'd asked his office to do the same [quoted text clipped - 7 lines] > > So far, so good ;-) So far sounds like a wonderful plan. Two updates in one day... Deborah saw Dr. Smiley this morning and her markers were up 10% from three weeks ago (still under 100 but just barely). He told her to start Tykerb today and put in a rush order on the Xeloda - which should be here on Friday. Sharon the onc nurse went through side effects and we're pretty well prepared. Here we go again ;-) > Two updates in one day... > [quoted text clipped - 5 lines] > > Here we go again ;-) <sigh> Holding both thumbs and crossing everything I have to cross, Allan. I've no idea what the drugs are or what they do but I trust Dr Smiley. Hugs to both of you, Mary >Here we go again I'm so sorry to hear that Deborah's markers were up but so glad you both seem armed and prepared for battle as usual. It really touched my heart to see you wrote, as usual, "Here we go again". She is so fortunate to have you take on this battle with her and do so much to help her. Best of luck to you both on your next encounter with this disease. What brave soldiers you both are! Bea 'NO FORWARDS OR SPAM, PLEASE" And yet another update... Treatment with Tykerb + Xeloda has been blissfully uneventful - she spent a fair bit of time in the bathroom the day after we started treatment but that's a known side effect and it went away as quickly as it came. The onc nurses recommended an OTC remedy like Imodium AD but that wasn't necessary either. The frequent trips to the bathroom only lasted one day. Deborah has developed a rather nasty dry cough over the past month. Hopefully the new treatment will get that under control as well. Cough seems to have gotten a little worse since she switched treatment and cough is a known (but relatively rare) side effect of Xeloda. At first I thought it might be the meds making the cough worse, but Dr. Smiley said this was just "how things were going to go" and prescribed a cough syrup with codeine to help with the cough. I think maybe tumor flare from new treatment has stimulated the nasties a little and if that's true things will get better. Deborah slept pretty well last night ;-) On the cough syrup - it was a simple prescription - Cheratussin AC which is basically codeine and an expectorant. I don't know whether Dr. Smiley wrote DAW on the prescription (dispense as written - which wouldn't make sense) or failed to check the box that authorized a generic equivalent (makes more sense). Anyway, this cough syrup comes in a 180ml bottle. Dr. Smiley prescribes 240ml so they fill the script with two bottles and (I asssume) pitch the unused portion. Anyway, my insurance company will not cover name brand drugs that have a generic equivalent and until yesterday I'd never seen a $30 bottle of cough syrup before ;-) That's an easy problem to solve, though. Deborah sees the doc today and will explain things and get a new script. But - the cough syrup worked well and Deborah got some rest. A lot of the time she'd been coughing until she vomited and that hasn't been much fun for her. > And yet another update... > [quoted text clipped - 34 lines] > the time she'd been coughing until she vomited and that hasn't been > much fun for her. Allan, these days, when I see 'update' followed by your name my heart sinks. But now I'm uplifted again! I hopie things continue to improve. Hugs, Mary > Allan, these days, when I see 'update' followed by your name my heart sinks. > > But now I'm uplifted again! > > I hopie things continue to improve. We're doing pretty well, Mary - thanks. hugs back, allan |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.