Doxil scare

kayandok
kayandok Member Posts: 1,202 Member
edited March 2014 in Ovarian Cancer #1
Just got back from the hospital this am after having my first doxil infusion. (The procedure here in Japan is that with any first time chemo you have to go overnight.)

Had a bit of a scare. After 20 minutes of the doxil drip, I began to get chest pains. At first I thought it was my imagination, but it continued to get worse. I felt that something was constricting in the middle of my chest under my breast bone. I rang the nurse. As soon as they stopped the drip it began to subside. They immediately brought in the EKG machine (I think that is the English word) and hooked me up. By the time I was hooked up and checked, everything was fine, no pain and nothing registered on the monitor. After a 30 minutes or so, we decided to try again, this time at a slower drip. They kept the EKG hooked up and the doctor and a couple nurses camped out for awhile, and much to my relief, everything was fine. They suspect I was having some anxiety, that could have caused it. Funny thing is, I felt very relaxed. Who knows, but I am glad I got through it. Now just praying that I will have some number diving.....

Hugs,
kathleen

Comments

  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #2
    Scary
    Dear Kathleen, that is scary and hope it is not an allergic reaction. Glad it went okay after they slowed it down. Hugs ♥ Prayers bonnie
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    Scary
    Dear Kathleen, What a scare that must have been for you. I did not feel anything with the infusion last month but an still waiting for the echocardiogram results to see if there is anything showing. The gyn/onc did drop the Doxil for tomorrow's infusion and we will just use Carboplatin for awhile. I am glad for that.
    Let us know how the fatigue goes. Doxil hit me in 24 hours and then the carbo in 72. (((Hugs and prayers))) Saundra
  • jane65
    jane65 Member Posts: 277
    #4
    Kathleen and Bonnie
    Kathleen, I hope the next Doxil treatment goes smoothly, have you checked the Doxil website to see if it's a side affect?
    Feel good,
    Jane
    Bonnie, speaking of scary, I hope that the pictures are not of your head!! That would be really scary... Jane
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
    The doctor doesn't think that
    it was an allergic reaction. As soon as Mark heard, he googled it and read that occasionally it can happen, and once they slow the drip and do it, it is fine. I am still puzzled, but thankful that I feel totally fine. Not even the usual constipation I have experienced with every chemo I have had!! I am icing and doing all the things on the list. It is still very hot here in Japan, so am avoiding going outside as much as possible, which is hard for me, being an outdoor gal....

    I am only the 5th person to receive doxil in this hospital, and they are being very careful. Told me to come in the minute my hands or feet show signs. My doc is giving me a little lower dose. 40 (something) as opposed to 50. He feels that will have just as powerful punch with lesser chance of the side effects. My CA125 is at 120 now.

    Hugs.
    kathleen:)
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #6
    jane65 said:

    Kathleen and Bonnie
    Kathleen, I hope the next Doxil treatment goes smoothly, have you checked the Doxil website to see if it's a side affect?
    Feel good,
    Jane
    Bonnie, speaking of scary, I hope that the pictures are not of your head!! That would be really scary... Jane

    my head
    yes this is my head and it is not scary.. lots of comments on it and I finished the whole head now. This is before I peeled the stuff off so not as bold. It is a henna tattoo and is only temporary.. durn it. LOL
  • MichaelaMarie
    MichaelaMarie Member Posts: 163
    #7
    kayandok said:

    The doctor doesn't think that
    it was an allergic reaction. As soon as Mark heard, he googled it and read that occasionally it can happen, and once they slow the drip and do it, it is fine. I am still puzzled, but thankful that I feel totally fine. Not even the usual constipation I have experienced with every chemo I have had!! I am icing and doing all the things on the list. It is still very hot here in Japan, so am avoiding going outside as much as possible, which is hard for me, being an outdoor gal....

    I am only the 5th person to receive doxil in this hospital, and they are being very careful. Told me to come in the minute my hands or feet show signs. My doc is giving me a little lower dose. 40 (something) as opposed to 50. He feels that will have just as powerful punch with lesser chance of the side effects. My CA125 is at 120 now.

    Hugs.
    kathleen:)

    Doxil
    Hello Kathleen,

    It sure goes to show that we know our bodies better than doctors do, right? You knew it wasn't anxiety because you were feeling relaxed.

    I'm so glad that all went well after that. Because I was in a clinical trial using Doxil, I had to have an EKG before every treatment. I did have a lot of trouble with very painful rashes, but most were my own fault. Having been warned to not wear underwear, and to basically just wear mumu's, I thought I could get away with wearing a bra just when I went out.....NOT!!!!! Horrific rash. Also, went on a six hour car trip soon after an infusion......again, horrific back leg rashes. But, listening to the nurses and doing what they say should help greatly!

    I hope your CA-125 will be in the normal range the next time they take it!

    Hugs,
    MM
  • kayandok
    kayandok Member Posts: 1,202 Member
    #8
    MichaelaMarie said:

    Doxil
    Hello Kathleen,

    It sure goes to show that we know our bodies better than doctors do, right? You knew it wasn't anxiety because you were feeling relaxed.

    I'm so glad that all went well after that. Because I was in a clinical trial using Doxil, I had to have an EKG before every treatment. I did have a lot of trouble with very painful rashes, but most were my own fault. Having been warned to not wear underwear, and to basically just wear mumu's, I thought I could get away with wearing a bra just when I went out.....NOT!!!!! Horrific rash. Also, went on a six hour car trip soon after an infusion......again, horrific back leg rashes. But, listening to the nurses and doing what they say should help greatly!

    I hope your CA-125 will be in the normal range the next time they take it!

    Hugs,
    MM

    THanks,
    MM, I have been doing all the "right" things. Today is day #5 and I am feeling good. Did the doxil knock your numbers down?
    Kathleen:)
  • misspokey
    misspokey Member Posts: 25
    #9
    kayandok said:

    The doctor doesn't think that
    it was an allergic reaction. As soon as Mark heard, he googled it and read that occasionally it can happen, and once they slow the drip and do it, it is fine. I am still puzzled, but thankful that I feel totally fine. Not even the usual constipation I have experienced with every chemo I have had!! I am icing and doing all the things on the list. It is still very hot here in Japan, so am avoiding going outside as much as possible, which is hard for me, being an outdoor gal....

    I am only the 5th person to receive doxil in this hospital, and they are being very careful. Told me to come in the minute my hands or feet show signs. My doc is giving me a little lower dose. 40 (something) as opposed to 50. He feels that will have just as powerful punch with lesser chance of the side effects. My CA125 is at 120 now.

    Hugs.
    kathleen:)

    my first Doxil
    Hi. I had sort of the same reaction with my Doxil. They started slow for 15 min. About that point my chest started to feel odd, hard to get air in or something. Was hard to explain. Nurse turned off and it subsided. Checked with dr and he said to give a little Ativan and some Benedryl. Started again slow for 15, then up to normal and all was ok. Did get groggy from Benedryl but that was ok. They didn't check ekg just blood pressure and that was fine. Sounds like maybe they'll give Benedryl each time for a pre-med. Didnt' like the feeling that's for sure, scary stuff. We'll see how next one goes.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #10
    misspokey said:

    my first Doxil
    Hi. I had sort of the same reaction with my Doxil. They started slow for 15 min. About that point my chest started to feel odd, hard to get air in or something. Was hard to explain. Nurse turned off and it subsided. Checked with dr and he said to give a little Ativan and some Benedryl. Started again slow for 15, then up to normal and all was ok. Did get groggy from Benedryl but that was ok. They didn't check ekg just blood pressure and that was fine. Sounds like maybe they'll give Benedryl each time for a pre-med. Didnt' like the feeling that's for sure, scary stuff. We'll see how next one goes.

    did it work?
    Sounds exactly the same as what i experienced. I am on day 11 and doing great, just had a blood test and white and reds are all fine. So, next time they will start the drip slow from the beginning, no EKG, since I will be in the out-patient clinic.

    Did doxil bring down your numbers?

    Hugs, Kathleen
  • 461ocean
    461ocean Member Posts: 9
    #11
    doxil
    Hi Kathleen, read your post about Doxil, I had a reaction as well but my hands swelled up, nurse slowed the drip and all went fine after that.. sounds like you had an alergic reaction, stress,nerves or all of the above... the main thing is you are ok... Doxil brought my CA125 to normal levels after 4 treatments... praying for a good outcome for you as well...
  • kayandok
    kayandok Member Posts: 1,202 Member
    #12
    461ocean said:

    doxil
    Hi Kathleen, read your post about Doxil, I had a reaction as well but my hands swelled up, nurse slowed the drip and all went fine after that.. sounds like you had an alergic reaction, stress,nerves or all of the above... the main thing is you are ok... Doxil brought my CA125 to normal levels after 4 treatments... praying for a good outcome for you as well...

    Thanks,
    for the the feedback. Congrats on the low numbers!
    Today, is day 16 for me and still doing good. Praying the numbers get kicked back.
    Hugs, kathleen:)
  • renesan
    renesan Member Posts: 3
    #13
    Japan Hospital?
    Hi, Kathleen,
    I am treated in U.S. but a Japan resident. My U.S. doctors prescribed doxil. Is it possible to have doxil treatment in Japan? Is it covered by Japanese insurance?
    Thanks, Rene
  • kayandok
    kayandok Member Posts: 1,202 Member
    #14
    renesan said:

    Japan Hospital?
    Hi, Kathleen,
    I am treated in U.S. but a Japan resident. My U.S. doctors prescribed doxil. Is it possible to have doxil treatment in Japan? Is it covered by Japanese insurance?
    Thanks, Rene

    Japan Hospital
    Hi Rene,
    Doxil was just approved for OvCa in Japan starting last April, I believe. My doc (Hyogo Idai in Nishinomiya) does use it and I am the 5th patient to get it in this hospital. Insurance covers it, but as you know, the national insurance you have to pay 30%, so unless you have private coverage that covers the rest, it is still 150,000 yen or so a month for Doxil. This is my third line chemo and every one has been different.
    Where in Japan are you planning on living? Do you have a good gyn/oco here?
    Kathleen:)
  • renesan
    renesan Member Posts: 3
    #15
    kayandok said:

    Japan Hospital
    Hi Rene,
    Doxil was just approved for OvCa in Japan starting last April, I believe. My doc (Hyogo Idai in Nishinomiya) does use it and I am the 5th patient to get it in this hospital. Insurance covers it, but as you know, the national insurance you have to pay 30%, so unless you have private coverage that covers the rest, it is still 150,000 yen or so a month for Doxil. This is my third line chemo and every one has been different.
    Where in Japan are you planning on living? Do you have a good gyn/oco here?
    Kathleen:)

    Japan Hospital
    Hello Kathleen
    The information is very helpful. I am actually a long term resident of Tokyo. Have done most of my treatment follow-ups in a Tokyo hospital. I will check the Japan Doxil treatment with my Tokyo doctors and see what they will come up with. Really appreciate your help and information.
    Thanks again, Rene
  • kayandok
    kayandok Member Posts: 1,202 Member
    #16
    renesan said:

    Japan Hospital
    Hello Kathleen
    The information is very helpful. I am actually a long term resident of Tokyo. Have done most of my treatment follow-ups in a Tokyo hospital. I will check the Japan Doxil treatment with my Tokyo doctors and see what they will come up with. Really appreciate your help and information.
    Thanks again, Rene

    keep me posted how it goes. I am interested in how OvCa it treated in Tokyo. Wishing you the very best!
    kathleen:)
  • renesan
    renesan Member Posts: 3
    #17
    kayandok said:

    keep me posted how it goes. I am interested in how OvCa it treated in Tokyo. Wishing you the very best!
    kathleen:)

    Doxil
    Hello Kathleen,
    I finally concluded my talks with my Japanese doctors re Doxil. My cancer (primary brain) is not indicated by the Japanese authorities for Doxil.
    This means that my insurance will not cover any part of the cost. Doxil is basically indicated for OvCa. I am a male patient with recurring brain
    tumor that had spread to my abdomen and lungs. I can not afford the high US drug prices witout insurance.
    Thank you for your help and all the best. Rene

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