Seeking advice for my friend

RhoniNY
RhoniNY Member Posts: 2 Member
in Ovarian Cancer #1
My best friend and chemo buddy (I've just finished treatment for colon cancer) has been in remission from her ovarian cancer for almost 5 years. She's recently had a recurrence with the tumor attached to her sigmoid colon. She had 2 treatments of Taxol/Carboplatin and had such a severe reaction that the Taxol had to be discontinued. She finished her remaining 4 chemos with Carboplatin only.

Today she got her scan results - the tumor has shrunk slightly and apparently has not spread anywhere else. Her doctor (at University of Oklahoma) gave her a choice of starting Doxil treatments or to wait 3 months and have another scan, then go from there. According to my friend, the doctor didn't offer any advice or in depth discussion as to which way she should go, just telling her she needed a decision in a week.I'm not sure if the problem is the doctors "bedside manner" or my friend not asking questions, but this doctor is supposed to be an expert regarding ovarian cancer and I'd expect a better consultation from her. Unfortunately my friend lives in Oklahoma and I'm in NY, so I'm not able to go with her - but her husband goes to every appointment.

What I'm trying to ask, in my long winded way is did anyone have experience with a recurrence and making a decision like this? How harsh a drug is Doxil and what side effects did you have?
My friend tends to have very severe reactions to all the chemos she's tried - she even developed fibromyalgia after her first bout 5 years ago, and is somewhat disabled from that too.

Thank you all for listening, and I appreciate any insight you could give me, as wel as any suggestions.

Comments

  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #2
    I don't know much about doxil
    but my doctor said it is the go to medication for cancer treatments I also had a reaction to the taxol the first time I took it but they just lowered the amount going in and made it a longer drip and that seemed to work. I know Doxil is really good because my doctor just met with the makers of doxil to figure how to interduce it back into the use for ovarian cancer. I think they said it turned out ok because he is now using it in his practice. I was in remission for around only five months and doxil was not avalible so I got started back on the taxol but if I start having problems again then I will be going on doxil. I hope this helps and I will be praying for your friend oh by the way tell her if it was me I would just start the chemo again since the tumor is not gone and has only shrunk a little.

    Love, Hugs, and Prayers
    Anne
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    Have your friend get a
    Have your friend get a second opinion. When I was told I had a recurrence and that the mass could not be operated on because they couldn't get clear margins, the doctor (top doc) wanted to start me on chemo right away to help shrink the tumor to then try to remove some of it. And when I didn't respond, he wrote on my chart "patient seeking help elsewhere". Anyway, I sought another opinion from another local hospital only to find out that this doctor was still with the group from the other hospital. So I sought out a third doctor from a completely different area. Not only did I not have to take chemo, I was able to have it successfully surgically removed. Although not all results are the same, I would definitely seek another opinion.

    However, in doing so, you are waiting and worrying. My whole entire process took approximately 7 months. It can be nerve wracking.
  • RhoniNY
    RhoniNY Member Posts: 2 Member
    #4
    Kaleena said:

    Have your friend get a
    Have your friend get a second opinion. When I was told I had a recurrence and that the mass could not be operated on because they couldn't get clear margins, the doctor (top doc) wanted to start me on chemo right away to help shrink the tumor to then try to remove some of it. And when I didn't respond, he wrote on my chart "patient seeking help elsewhere". Anyway, I sought another opinion from another local hospital only to find out that this doctor was still with the group from the other hospital. So I sought out a third doctor from a completely different area. Not only did I not have to take chemo, I was able to have it successfully surgically removed. Although not all results are the same, I would definitely seek another opinion.

    However, in doing so, you are waiting and worrying. My whole entire process took approximately 7 months. It can be nerve wracking.

    Thanks Anne & Kaleena! Does anyone else have any input for me?
    It's just so hard when she's so far away - we really only talk via email.

    I've been after her for a while to get a second opinion - she refuses. She's been with this doctor for years, since her first diagnosis. Apparently this particular doctor is an authority on ovarian cancer, and my friend was in the clinical trials of the treatment that involved getting chemo into both your veins and directly into the pelvis through a second port. I don't know what that kind of treatment is called, but I've been told it's now used widely. So my friend feels that she won't be able to find a better doctor with more knowledge.

    She WAS offered surgery when this tumor was discovered and refused that too - her original surgery totally traumatized her. She'd had - in her words - hundreds of small tumors literally peeled of her small intestines. With this new one being attached to her sigmoid colon, she's terrified of needing a colostomy.Every time I even bring up surgery she won't even respond to the subject, just talks about something else. Having had colon resection surgery myself, I can understand how she feels, especially since she's been told that it will return even if removed.

    But I am still going to keep at her about both issues! I'm not going to let her just give up!
  • sandyinmi
    sandyinmi Member Posts: 17
    #5
    RhoniNY said:

    Thanks Anne & Kaleena! Does anyone else have any input for me?
    It's just so hard when she's so far away - we really only talk via email.

    I've been after her for a while to get a second opinion - she refuses. She's been with this doctor for years, since her first diagnosis. Apparently this particular doctor is an authority on ovarian cancer, and my friend was in the clinical trials of the treatment that involved getting chemo into both your veins and directly into the pelvis through a second port. I don't know what that kind of treatment is called, but I've been told it's now used widely. So my friend feels that she won't be able to find a better doctor with more knowledge.

    She WAS offered surgery when this tumor was discovered and refused that too - her original surgery totally traumatized her. She'd had - in her words - hundreds of small tumors literally peeled of her small intestines. With this new one being attached to her sigmoid colon, she's terrified of needing a colostomy.Every time I even bring up surgery she won't even respond to the subject, just talks about something else. Having had colon resection surgery myself, I can understand how she feels, especially since she's been told that it will return even if removed.

    But I am still going to keep at her about both issues! I'm not going to let her just give up!

    Carbo as a single agent
    I'm in my first round of treatment, so I can't speak about recurrence, but I can speak about carboplatin as a single agent. I too had a reaction to Taxol as well as Taxotere. Unable to tolerate chemo with either. My first line has been carboplatin alone. My CA 125 has fallen sharply with this as a single agent. I also have fibro and believe that carboplatin has had only a minimal impact.

    I don't know if I would keep pushing for a second opinion. Just my personal opinion - you have told her your concerns, and she has made an educated 'choice'. I think she would appreciate your support.
  • mopar
    mopar Member Posts: 1,972 Member
    #6
    PRAYERS & HUGS
    Congratulations on completing your treament! That is a wonderful milestone, and I hope you celebrate big!

    You are a wonderful friend to be so proactive for your dear chemo buddy. She may be feeling some fear and anxiety, which could account for her not wanting to talk about it too much. I can also understand her insistence on staying with her current oncologist. I would feel the same way, but I agree that a second opinion wouldn't hurt.

    I also had a reaction to Taxol during my recurrance. They switched me to Taxotere, and I handled it well in combination with the Carboplatin. Maybe she could approach the doctor about that possibility.

    Sending hugs and prayers to you both. Keep us informed.

    Monika

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