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Thread: Dr. suggested Xeloda yesterday - will cost $5,000. per month

  1. #1
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    Dr. suggested Xeloda yesterday - will cost $5,000. per month

    Are they out of their freaking minds?

    I have judgmental friends saying "So what? Wouldn't you spend $5,000 to SAVE YOUR HUSBAND'S LIFE?" (implying I'm cheap if I don't okay this). And others who say "The oncologist is in bed with the Pharmaceutical company. Of course he'll suggest their drug. Push for a Plan B"

    I'm ready to raid the college fund. Stage IV Pan Can husband says no. Yes not ready to die just yet. We make too much in combined income for qualify for aid, yet I'd rather not lose my house, college fund, etc. in this process. I've worked hard to get here. Looking at on-line pharmacies that only charge $1,000 (or less!) for Xeloda. What's up with THAT?

    I suggested Folfirinox and Abraxane and all the other cool names I've found on this forum. Onco says, "Well, those are alternatives. Let's try the Xeloda first" yeah,but you're prescribing something I can't easily afford, with no guarantees...$5,000 could buy me a new boiler and winter is coming and it's getting cold...

    I still don't understand why infusion therapies are cheaper than oral. That has to change in the future.

    Thanks for letting me rant.
    "Love the humor. Hate the tumor."


  2. #2
    Senior User hiyasofsj's Avatar
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    One 48 hour infusion of Folfirinox is approx $10k, meaning a full cycle is just under $20k. It took 9.5 cycles to eradicate my wife's 5cm tumor on the body of her pancreas and spots on her liver and the chemo only took care of part NOT ALL of these cancer cells. The cancerous pancreatic stem cells and tumor cells not targeted by chemotherapy were already killed by years of Metformin prescribed to treat her type 2 diabetes since 2006. At this point with my wife's current condition revealing "no progressive metastatic disease or tumor recurrence" I can't see myself complaining about the bureaucracy of pharmaceutical companies. It has most definitely worked to our advantage. I can not say we would be where we are today had our oncologists not been influenced by it and used it to our benefit since her diagnosis in July 2011 with inoperable stage 4 pancreatic cancer.

  3. #3
    Super Moderator Top User DebbieC's Avatar
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    Hi Lisa,

    That sucks! Just curious...what was your husband on before? Do you have any idea why he's pushing for Xeloda over Abraxane or Folfirinox? Xeloda was the last resort in my dad's plan.

    As for the conspiracy of the doctors being in bed with the drug companies...just think of it this way....when doctors get cancer, what do they take? They don't have a special medicine cabinet filled with drugs that are just for them that they AREN'T in bed with. The drugs that are available are the ones that work! Whether or not they are getting kickbacks, these ARE the drugs that work.

    But I still don't get why Xeloda? Especially when it's usually used in conjunction with Gemcitabine or another drug. My dad was on it alone when it was the only thing he could take since IV drugs were out of the question.
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  4. #4
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    He was on Gemcitabine + PEGPH20 on a clinical trial from 5/12 - 10/12. tumor grew 20%
    "Love the humor. Hate the tumor."


  5. #5
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    I know when the doc put me on xeloda at the beginning of my treatment they told me to go through the hospital pharmacy as they had a way of dealing with prescription plans that tend to be successful, since I was told my cost would be $4000 per month I was more than happy to let the hospital pharmacy go for it. I ended up paying $90 per month. Not sure if this is an option for you. Good luck!

    Deb
    49 yo female. 4/12 became jaundiced went to doc. Test revealed mass on head of pancreas.nodule on lung and one lymph node involved 5/12 chemo(Zeloda) and radiation for 5 1/2 weeks. Tumor shrank, lymph node shrank, no basic change in nodule.
    Vats surgery on 7/17/12 showed nodule was in fact pancreatic cancer that has spread. Whipple no longer an option. Start iv chemo on 8/02/2012 with 5fu irinotecan and oxaliplatin.
    09/11/12 stent replaced (was originally placed 04/12).
    Jan 2013- scan reveals no growth or spread
    Feb 2013- dropped oxaliplatin due to repeated low WBC counts so now on folfiri.
    April 18th 2013- scan reveals again no growth or spread! Good news
    Sept 5th 2013- scan today reveals no growth or spread! Doc now calls me stable mable

  6. #6
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    Doc called me (on a Saturday)! Ok ok I admit I called a Senator first but that's another story. Anyway, said I shouldn't do the $5k Xeloda, that he will start my husband on Folfirinox infusion on Tues. I get the impression my husband is dying anyway so he's saving me money and throwing darts at the board at this point. Then a Visiting nurse will come to administer something else and my husband has to sleep with a pack overnight...my head is swimming.
    Last edited by Lisa Renee; 12-03-2012 at 01:36 PM.
    "Love the humor. Hate the tumor."


  7. #7
    Super Moderator Top User DebbieC's Avatar
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    The pack isn't that bad. My dad had it and also a lot of others here and they will tell you that it's not as bad, or annoying, as it sounds. He'll be ok!
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  8. #8
    Top User Queensville's Avatar
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    You called a Senator??????? Blahahahahaha..... that's taking healthcare in in your own hands.
    July 22 2011 Hubby (64) Diagnosed PanCan. Sept2011- Feb 2012: Abraxane/Gemcitabine. Feb-May 2012:Gemcitabine only. June-Sept 2012 5FU. Sept 4-no more chemo - Just living life. Multiple stents. Jan 2013/18 month mark. Mets everywhere. Looking for a bumper sticker that says 'Stay at safe distance - Driver suffering caregiver burnout'. Hospice Thurs Feb 28 2013. March 12 2013 he went off to his new adventure where we will one day meet again. It was 20 months from date of diagnosis until now.

  9. #9
    Top User Carol Wal's Avatar
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    Quote Originally Posted by Lisa Renee View Post
    Doc called me (on a Saturday)! Ok ok I admit I called a Senator first but that's another story. Anyway, said I shouldn't do yhe $5k Xeloda, that he will start my husband on Folfirinox infusion on Tues. I get the impression my husband is dying anyway so he's saving me money and throwing darts at the board at this point. Then a Visiting nurse will come to sninister something else and my husband has to sleep with a pack overnight...my head is swimming.
    Whoooooo hOOOOOOOO you go girl.....Never hurts to have a Senator in your back pocket....I'm taking it that the new drug is covered ?? Really can't add much as we are just starting this adventure and only have had the one shipment of Xeloda delivered which thank goodness was paid for......Just don't give up on your husband yet who knows maybe this new treatment will buy you some more time together.....I think you are in the Hard Part right now and my prayers and lots of Hugs are going out to you ........
    Oct 9,2012 Hubby's ( 65 ) ERCP, Stent put in also told might be cancer
    Oct 23,2012 ( ERCP ) diagnosed. PC on head of pancreas.
    Nov. 5,2012 Whipple at Loma Linda Hosp.... could not be finished due to heart issues
    ( 4 1/2 hours into surgery )told it's also attached to Portal Vein, now only Chemo & Radiation
    11-27-12 Surgery site Infection
    Waiting for Chemo/Radiation
    1-6-13...Still waiting
    1-18-13 appt with Radiologist on 22nd.
    1-30-13 Hubby started on his radiation and Pill Chemo ( Xeloda 3200 mg per day ) for six weeks
    3-12-13 ( Bowel blockage) in Hospital Fluid being drained
    3-21-13 Last day of Chemo/radiation...Now on a much needed break
    4-18-13 New Stent put in metal with mesh
    4-19-13 2nd round of ( Xeloda ) 2 weeks on 1 week off till ? 4000 mg per day for 6 months ( changed to 3000 )
    6-12-13 Large Hernia at surgery site/won't be repaired due to his heart condition also losing toenails ( Xeloda )
    8-9-13 Taken off all Chemo just Living Life now and Keeping him Pain Free "In God's Hands"
    REMISSION NOW PRAYING IT WILL LAST 1-10-14

  10. #10
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    Lisa Renee,
    I am on folfox now which is 1 less drug than folfirinox. The home pack is a pain, but its manageable. You will hear a periodic "swoosh" sound as the drug goes in through the port.It may keep you from sleeping, but the chemo makes me so tired I am not disturbed. At first my dog would do a little "ruff" everytime the chemo "swooshed". Luckily he got used to it! Good luck!

  11. #11
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    I couldn't afford that. Luckily oz in oz government pays.
    31 when dx with stage 4 FNHL very young. 6 cycles of RCHOP14 then 2 of COP14
    Which put me in remission. Couldn't have maintaince as mabthera lowered white cell count so far still in remission.

  12. #12
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    What would I do without you guys?

    Yes I started with a NYC Councilman and worked my way up.
    Hurricane Sandy people aren't the only voters you know.

    As Didee would say: "squeaky whales get the grace!"
    (as she lovingly strokes her pet kangaroo)
    "Love the humor. Hate the tumor."


  13. #13
    Administrator Top User Didee's Avatar
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    Quote Originally Posted by Lisa Renee View Post
    What would I do without you guys?

    Yes I started with a NYC Councilman and worked my way up.
    Hurricane Sandy people aren't the only voters you know.

    As Didee would say: "squeaky whales get the grace!"
    (as she lovingly strokes her pet kangaroo)
    Saw that. lol.
    Aussie, age 58
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Out of all the things I have lost, I miss my mind the most.

  14. #14
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    One drug hubby was going to have to be on was also very expensive. It would have cost us after insurance about $1600 per month. Someone suggested contacting the mail order portion of insurance and we got it for $40 for a 90 day supply. Also called them and they overnighted it. I too have called state reps, senators.. you are right, the squeaky wheel get the grease! Good luck to you, love your rants and humor.
    Spouse/Caregiver of 54 yr old male
    Diagnosed Primary CNS Lymphoma 2/2011
    HDMTX Chemo- 8 cycles
    HDMTX Maintenance Chemo- 11 cycles
    Complications: clots, kidney issues, slow clearance of
    chemo, dermatitis
    11/2013 Recurring clots in lungs/legs
    Scan 12-27-13 all clear
    Scan 3-13 all clear
    Next scan in October, done and all clear!

  15. #15
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    My Mother's oncologist also prescribed Xeloda to her to take as oral chemo at home. The cost was also astronomical. I know that the doctors get kick backs from the drug manufacturers. I am certain of that. I did a lot of research on Xeloda, and found out that it was a salvage chemo drug, to treat people who cannot withstand harsher types of chemo. However, my research pointed out that Xeloda on its own, without gemzar or other combination chemo cocktail, was not very effective. Like I said, more like a last resort salvage chemo. My Mom refused to take it. They pharmacy sent it to us immediately for a $5,000 cost for not that many pills. They fed ex it to you, because it so expensive, they require a signature. Then, in a couple of weeks, they sent us another shipment through fed ex, even though I told them over the phone, we will not need a refill, since my Mom never took any of the pills. They were so eager to make their money, they sent us a shipment anyway. I refused to accept it from the fed ex man, and sent it back to the pharmacy. Again, my research indicated the Xeloda by itself was not very effective for stage 4 pancreatic cancer. But, if the patient is frail and very sick, they may not be able to tolerate other types of harsher chemo. The other oncologist we consulted with told me that drugs like Xeloda and Tarceva, tend to extend a patient's life by very few days. So very sad, that salvage chemo therapy costs such crazy money, and provides such little benefit.

  16. #16
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    These kick backs do you think it only happens in the USA
    31 when dx with stage 4 FNHL very young. 6 cycles of RCHOP14 then 2 of COP14
    Which put me in remission. Couldn't have maintaince as mabthera lowered white cell count so far still in remission.

  17. #17
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    Thanks Heartbroken100 for that post. I have no time for bullsh*t and you just got to the point. I appreciate the stories.
    "Love the humor. Hate the tumor."


  18. #18
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    when my husband was on the folfirinox, the time breakdown went like this: Wednesday to the hospital for the mandatory pre-chemo bloodwork, then up to infusion where they hooked up the the first round. Does your husband already have a port in place? I don't know if they do that for the gemcitibine, but you need one for the folfirinox. There are three bags that go in and at the end, a home health nurse comes in and makes sure it is set up so that the pump can be carried in a lovely "man purse" (our description) for over the shoulder comfort. It is advised, if carrying, to wear the bag on the opposite side of from the pump, as drawing the weapon is much harder with the tubing, etc. in the way . This observation is a throwback to when he was still working. Anyway, he kept it on until Friday, when the home health nurse would come to the house, timed for the end of the chemo, and remove the apparatus. Showering is a bit of a challenge, but the swooshing didn't seem to bother us at all. I cannot remember if the home health nurse visited the house first or just went through everything in great detail at the hospital. Each time we went, which was every other week, she gave us a cardboard box with supplies. We ended up with lots of alcohol prep swabs, which has been helpful removing the adhesive from his fentanyl patches.

    Sometimes I wonder about the chemo too. Mine is on the gemcitibine now, but while the mets in the lungs have shrunk, the liver is having a cancer party. The dart board analogy seems far too accurate. I know that this isn't going to cure my husband. I am watching him get thinner and thinner, more and more tired. He does have some good days, but it is slipping away. We have definitely "beat the odds" because it has been 15 months now, but he is very tired. When he was on the folfirinox, the cancer definitely shrunk a lot, and it gave us a good 8 months at least; he was on the protocol from December to August.

    Good for you with the political-powers-that-be!
    hugs and hugs and hugs.
    Lise
    "May you be held in compassion; May your pain and suffering be eased; May you be at Peace"

  19. #19
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    Thanks Lise114. I am dreading a nurse coming into my messy house. But I'm sure she's seen worse.

    Steven has a port in place already. So it's not a big deal.

    15 months - that's amazing! I am proud of your husband and I don't even know him.

    I am not happy also, about having to take off from work. I need my job and health coverage, but I have to nurse my husband. Will push the paid leave to the last day and then worry about COBRA.
    "Love the humor. Hate the tumor."


  20. #20
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    Hi am on the xeloda tablets at the moment Dr explained that it is a form of folfox she offered it to me because I freaked out a bit about the pic etc I am still working 5 days a week and doing everything the same as usual just get a bit more tired than before this is my 3rd cycle and am due for a ct scan shortly last scan showed a shrinkage in the mets and in the tumour but Dr said it might not keep working then I will have to do the pic and pump option 9 months now and still ok I am in Australia so I only pay $70 each round thankfully

 
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