Tumor markers elevated, a little worried right now.

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited September 2015

    Moni, can you try to contact the pharmaceutical company that makes the drug? They might be able to help. My MIL had done that for her RA, and was able to get the very expensive medicine at a very reasonable price. Prayers don't have to go to "just" Christians. For me, it's who ever you believe in as your "guide" if you will. Different religions have different "Gods" that they pray to. Or perhaps it's just the spiritual part within your self.

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  • moni731
    moni731 Member Posts: 293
    edited September 2015

    Goldie- thank you for clarifying! The cost should not be a problem as I am sure the Ins. co will eventually approve it. It is so frustrating that they drag their feet. Twelve days to approve a PET, eleven months to approve and asthma med that now I cannot have as cancer contraindicates it's use, and so on. Wish I lived in their time zones!

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  • moni731
    moni731 Member Posts: 293
    edited September 2015

    Oh yes, and Kadcyla is 9400.00 per month just drug cost, not even admin cost! Simply amazing...

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited September 2015

    Oh gosh, wish I had some advice for you. It is AWFUL when we can't get what we need. These cancer drugs are stupid expensive. Makes ya wonder if it really is true, that that is why they don't want a cure. Hoping you get what you need. If I had some of that Fentnol (sp) I'd send it to you.

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  • moni731
    moni731 Member Posts: 293
    edited September 2015

    Goldie- thanks for the thought! Now the pharmacy will only give me 5 days more of Toradol. Said it can cause stomach perforation! Told the pharmacist that at this point, maybe that would not be a bad way to go and instead of slowly dying it would be fast! He said nothing else after that.

    Went into my new job physical today and the nurse stated that I had a beautiful tan and what a picture of health! Almost choked, but managed to just laugh and thank her. One more hurdle on Wed.

    Off to chemo 0700 in the am. They are doing it in the hospital and not in the infusion center. Told them I hoped it was all for naught!

    Good night all!

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited September 2015

    Moni, it always amazes me as to how "well" and "healthy" I look, and no pain for me (at least not yet). Again, wishing you all the best. What is the cocktail being given? How often?

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  • moni731
    moni731 Member Posts: 293
    edited September 2015

    Hi all! Had the first 1/2 of the Kadcyla infusion. Failed the skin test, so the allergist had to do a de-sensitization protocol that starts with a minute dose and continues adding as lolerated. Made it 1/2 through before we stopped. Going tomorrow after physical for new job. The Kadcyla required 200 mg of benadryl over 6 hours, 32mg Zofran, two doses of solu-medrol. Too much fun. One nurse came in and said she wanted to add fluids to run with the Kadcyla so that might dilute it more. She said "I am going to give a fluid with this since you're young and healthy'. I responed 'did everyone forget why I am here? HAHAHA

    Good night all!

    P.S. I guess the approval went through, I did not sign a financial responsibility paper!

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited September 2015

    Moni ~ I have been away from this site for awhile and when I read through the posts that were made since I have been on this thread, I was very sorry to hear you are having such terrible problems. I know there is nothing I can say that will make things better, but I will be praying that the treatment you will be having will keep things at bay, and most of all, I hope that you are able to find a drug (and get it approved) for your pain. You are in my thoughts and heart. Hugs...Linda

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited September 2015

    Moni ~ I have been away from this site for awhile and when I read through the posts that were made since I have been on this thread, I was very sorry to hear you are having such terrible problems. I know there is nothing I can say that will make things better, but I will be praying that the treatment you will be having will keep things at bay, and most of all, I hope that you are able to find a drug (and get it approved) for your pain. You are in my thoughts and heart. Hugs...Linda

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited September 2015

    Moni, loving (at least) your sense of humor. Young and healthy! What was her response?

    Glad you got the approval. You must be allergic to so many things, makes it even harder to deal with all this crap.

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  • moni731
    moni731 Member Posts: 293
    edited October 2015

    Well the first infusion was over two days. Tolerated it well. Woke up the morning and no liver pain! Still have some nausea, not bad. Hope it stays this way!

    Goldie- yes that was funny! She qualified it by saying I was in the lower age group. As this is done in the hospital, they get off the 'special cases' . The women next to me was 93!

    Good night all!

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited October 2015

    Moni, yay for no liver pain. I hope the nausea is minimal. Infusions every 4 weeks?

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2015

    Moni, could it be that the first infusion has already knocked back the cancer in your liver? So glad the pain went away!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2015

    Moni, I'm so glad the pain went away!

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  • moni731
    moni731 Member Posts: 293
    edited October 2015

    Hi all! Bit of a set back. After the second half of the infusion on Wednesday, woke up with a fever of 102.5 on Thursday. Onc said go to ER, admitted until I discharged myself this morning. The liver pain came back and had a bloody miserable time of it! They were limiting the fentanyl to 10 mcg hourly. So upset, told them that does not provide any relief and all it is doing is making me physically dependent on it. They brought up the opioid naivety again! Finally I said that would be my epitaph " she died in excruciating pain, but she was opioid naive!" Simply amazing! I intend to have a serious discussion with my MO at the next appt.

    I hope everyone else is doing well. Will catch up with reading soon.

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited October 2015

    Moni, that all just makes me so angry. Go get em girl!

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  • sonyarizzo
    sonyarizzo Member Posts: 71
    edited October 2015

    Hello,

    I have metastatic breast cancer to the bones and liver. I have been on a chemo pill called afinitor with Aromasin for two weeks now. My CEA wenr from 6.6 to 77.7. CA27-29 went from 394 to 3588 and my CA15-3 went from 151 to 425. I'm really scared and worried. Anyone else have markers this high

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited October 2015

    Sonya, I don't have markers that high, but it should alert your onc! If not, then you need to call and ask. Those are some pretty high numbers.

    My CEA is 4.5

    CA27-29 is 58

    CA15-3 is 63

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  • sonyarizzo
    sonyarizzo Member Posts: 71
    edited October 2015

    I contacted my onc. The nurse called me back and said that my dr will be calling me this evening. These numbers are scaring me pretty bad. It seems a bit unreal actually. I am only 39. Been fighting this for 4 years. Stage 4 for over 2 years. This cancer is a beast. I need a few more years So I can be here for my 10 and 8 year old. Sometimes I get tired of fighting. Just hoping I can bring these numbers down some how. Anyone else have numbers this high.

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  • kt1966
    kt1966 Member Posts: 1,326
    edited October 2015

    Sonya- hi, sorry you are scared at the moment.

    The markers may be a sign you need to change treatments. Please join us in the stage IV threads. You will find there are many people dealing with this kind of thing.

    There is a thread especially for people with liver mets too

    https://community.breastcancer.org/forum/8/topic/8...

    I hope that helps. Sending hugs

    Ps edited to say- I noticed you just changed treatments. It can take a month or two for the new treatment to start showing results. No doubt your oncologist will recheck how your markers are then & maybe scan too

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited October 2015

    Sonya ~ Just want you to know I am thinking positive thoughts for you and throwing in a prayer or two as well. Hugs to you!

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited November 2015

    Bump!

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited December 2015

    Hoping everyone is doing great and are too busy having fun to stop by here. I will check back and see if anyone came to post. Missing you guys!

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited January 2016

    Happy New Year! I hope someone will stop by and let the rest of us know how you are doing. Miss you guys!

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited January 2016

    Hi Linny, same to you. I had a spike in TM's and scans revealed a new spot and one that got slightly larger. Having to do a larger dose of my chemo pills, but it's taking a toll on me! Horrible cramping and D.

    How about you?

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited January 2016

    Hi Goldie ~ I am sorry to hear that you have to deal with TMs rising and another spot. That really stinks! I can only imagine how a larger dose of medication causes the cramping and the dreaded D. During chemo, I had terrible gastric issues that were so painful, in fact that was the worst of my se's (if you don't count being bald), so I really feel for you. I almost passed out in a Barnes and Noble store one time. Now that would have been a sight...a bald, fat lady with her pants around her ankles. Sheesh! I hope your body adjusts to the new dosage and you will have less pain. I am doing ok, but dreading seeing the MO next week and having to have the dreaded TM test. I would love to just ignore it, but know that isn't a wise thing to do, so I will have to put on my big girl panties and deal with it. I'm so glad you stopped by. It's been pretty lonely here. Let us know if you are feeling better and I will post as well. Hugs to you!

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited February 2016

    Anybody out there?

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  • goldie0827
    goldie0827 Member Posts: 6,595
    edited February 2016

    Still here! How did your tests go Linny?

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  • bevin
    bevin Member Posts: 1,902
    edited February 2016

    How were your tests linny?

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  • linnyhopp
    linnyhopp Member Posts: 567
    edited February 2016

    Hi Guys ~ I am going to have my blood tests done next week. I am too busy being newly retired to go this week...lol! I am so glad to hear from both of you. I will be sure to keep you posted when I get the results. I hate the pit I get in my stomach between having the tests and getting th results. I have a feeling it's the same for all of us. I hope you are doing well and life is good for you both. Take care...hugs to you from me!


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