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Got my CA125: went UP from 71.5 to 78.3, even though I'm getting taxol weekly. :(

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Comments

  • No appt. yet at Fox Chase, but VERY informative appt locally.
    I picked up the CD that my local hospital made of all my 2010 CT/PETs and that needle biopsy to take with me to Fox Chase, but they haven't called me yet with an appointment. I will call them Monday if I don't hear from them today. Meanwhile I had an appointment for my 3-month regular internal with my gyne-onc this morning, and I'm still shaken by our frank conversation. The GOOD NEWS is that all look good from my internal/rectal physical exam. But the rest of the conversation was information (almost TMI!) and disturbing.

    We talked about my assumption that if we leave the underarm lymph node in, it may grow larger and start causing me pain, but that by then my platelet and nuetrofils will be too compromised by the chemo for them to safely do surgery. My gyne-onc said that is a possibility of course and that if that node grows uncontrolled it could press on a nerve and possible cause me to lose some use of that arm. (!!!!???!!!) We talked about the extended overall survival of having salvage surgery that would remove all measurable evidence of the cancer, which I had read in a recent study increases the statistical overall survival from 13 months to 30 months. For me that would also involve removing that para-aortic lymph node that keeps lighting up on every other PET scan. He said that my involved para-aortic node is right by an artery (which I assume is what para-aortic means, right???) and very close to my spine and 1 kidney and that this would be extensive dangerous surgery. I knew that, but he went on to say, "but if we can't get that node under control and it keeps growing it could press on your spine and cause some paralysis (!!!???!!!) ; or if it gets into that aorta I don't even want to paint you that scenario." (!!!???!!!) He said that the Geisinger tumor board was advising against the dual surgery for me because I probably would still have microscopic cancer cells elsewhere and still have cancer, and would probably need 5 to 6 weeks to heal from surgery before I was able to get back into chemo. He said that he had recommended radiation of both areas for me, but that my radiation-onc was against that. And he said if Fox Chase recommended surgery for me, and I wanted to go for it, he would advocate for me at Geisinger for them to do the surgery, because my case is so unusual and I am so strong.

    I asked about the taxol and why it stopped working for me after 23 rounds total. He said when they prescribe a chemo that attacks through the front door, after time the cancer learns to shut that front door; and then they have to attack through a back door or a window (by trying a new chemo). He said sometimes the cancer learns to shut ALL the doors and windows at once, and no chemo will work, but that we currently have no reason to believe that is true for me. And he said that after several other chemos we may even be able to go BACK to taxol as the cancer will no longer be able to keep the front door shut (t push that analogy).

    Seems like a 'damned if you do; damned if you don't scenario. I'm anxious to see what Fox Chase has to say and have no idea whether I want surgery now or what to do. But I am glad to be getting a clear picture of my options. Still, Id never thought about some of the grim things that could happen if chemo or radiation or surgery can't get those lymph nodes under control, and it is scary for sure.

    This comment has been removed by the Moderator
  • jazzy1
    jazzy1 Member Posts: 1,379
    unknown said:

    This comment has been removed by the Moderator

    Wow Linda~~
    A bit of overload I'd say. If anyone can handle it you can and we're here supporting you along the way.

    In my prayers....
    Jan
  • howdybooth
    howdybooth Member Posts: 42

    No appt. yet at Fox Chase, but VERY informative appt locally.
    I picked up the CD that my local hospital made of all my 2010 CT/PETs and that needle biopsy to take with me to Fox Chase, but they haven't called me yet with an appointment. I will call them Monday if I don't hear from them today. Meanwhile I had an appointment for my 3-month regular internal with my gyne-onc this morning, and I'm still shaken by our frank conversation. The GOOD NEWS is that all look good from my internal/rectal physical exam. But the rest of the conversation was information (almost TMI!) and disturbing.

    We talked about my assumption that if we leave the underarm lymph node in, it may grow larger and start causing me pain, but that by then my platelet and nuetrofils will be too compromised by the chemo for them to safely do surgery. My gyne-onc said that is a possibility of course and that if that node grows uncontrolled it could press on a nerve and possible cause me to lose some use of that arm. (!!!!???!!!) We talked about the extended overall survival of having salvage surgery that would remove all measurable evidence of the cancer, which I had read in a recent study increases the statistical overall survival from 13 months to 30 months. For me that would also involve removing that para-aortic lymph node that keeps lighting up on every other PET scan. He said that my involved para-aortic node is right by an artery (which I assume is what para-aortic means, right???) and very close to my spine and 1 kidney and that this would be extensive dangerous surgery. I knew that, but he went on to say, "but if we can't get that node under control and it keeps growing it could press on your spine and cause some paralysis (!!!???!!!) ; or if it gets into that aorta I don't even want to paint you that scenario." (!!!???!!!) He said that the Geisinger tumor board was advising against the dual surgery for me because I probably would still have microscopic cancer cells elsewhere and still have cancer, and would probably need 5 to 6 weeks to heal from surgery before I was able to get back into chemo. He said that he had recommended radiation of both areas for me, but that my radiation-onc was against that. And he said if Fox Chase recommended surgery for me, and I wanted to go for it, he would advocate for me at Geisinger for them to do the surgery, because my case is so unusual and I am so strong.

    I asked about the taxol and why it stopped working for me after 23 rounds total. He said when they prescribe a chemo that attacks through the front door, after time the cancer learns to shut that front door; and then they have to attack through a back door or a window (by trying a new chemo). He said sometimes the cancer learns to shut ALL the doors and windows at once, and no chemo will work, but that we currently have no reason to believe that is true for me. And he said that after several other chemos we may even be able to go BACK to taxol as the cancer will no longer be able to keep the front door shut (t push that analogy).

    Seems like a 'damned if you do; damned if you don't scenario. I'm anxious to see what Fox Chase has to say and have no idea whether I want surgery now or what to do. But I am glad to be getting a clear picture of my options. Still, Id never thought about some of the grim things that could happen if chemo or radiation or surgery can't get those lymph nodes under control, and it is scary for sure.

    Still in the Game
    OK - look at it this way......there are still options out there......so basically it's still a wait and see type prognosis. I know if it were me, I'd be just like you: cut it out and cut it out now! So you wait and see what comes next and next will start with your appointment at Fox Chase. And you know what.......you may also want to check with MD Anderson here in Texas! Now that you've gotten copies of your labs/scans/reports - keep a set for yourself!

    Keep strong!
    Terri
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Still in the Game
    OK - look at it this way......there are still options out there......so basically it's still a wait and see type prognosis. I know if it were me, I'd be just like you: cut it out and cut it out now! So you wait and see what comes next and next will start with your appointment at Fox Chase. And you know what.......you may also want to check with MD Anderson here in Texas! Now that you've gotten copies of your labs/scans/reports - keep a set for yourself!

    Keep strong!
    Terri

    Another tidbit I forgot that the oncology nurse said.
    Because my gyne-ons is also the head of Women's Health & a very big shot at the hospital, he first has an oncology nurse or P.A. come in and talk through everything with the patient. Because I was getting my PET scan last week, we skipped chemo, and we are skipping chemo until after my 2nd opinion on the surgery. I told the 'assistant' that I was concerned to be NOT getting chemo these past couple of weeks and perhaps a couple more weeks until I get to Fox Chase, because the lymph node under my arm was growing and lit up on the PET scan an incredible 17 (& I know anything lighting up brighter than 3.5 SUV is considered probably malignant). She said a very high uptake like that meant that the cancer there is dividing very rapidly & that's why it sucks up the glucose solution given for the PET, because it needs the sugar to support the rapid celll division. But what was interesting is that she said "That's probably why they all want you to do chemo instead of surgery: WHEN CELLS ARE DIVIDING VERY RAPIDLY, CHEMO WORKS AT ITS BEST." And I can see the sense of that, as some chemos kill just as the cells divide, and other chemos interrupt the cell division process, etc. Anyhow, I take this to mean if you have a high SUV # on your PET, chemo may be a really effective option. Just an interesting side note I forgot to toss out.

    Now that I have calmed down a little, I have to say that all this worry that the nodes could grow and pres on nerves or the spine and cause partial paralysis,.... Honestly I've never seen ANY posts on this Board or the ovarian board about that happening to anyone. Have you? I'm not going to let that keep me awake at night! M<aybe he just wants me to see the worst case scenario so that I do SOMETHING (surgery or chemo or radiation). & of course, I will. I just don't know which yet. I'm okay. I wanted 'eyes wide open'; but sometimes the 1st glimpse is pretty awful! HA!
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Another tidbit I forgot that the oncology nurse said.
    Because my gyne-ons is also the head of Women's Health & a very big shot at the hospital, he first has an oncology nurse or P.A. come in and talk through everything with the patient. Because I was getting my PET scan last week, we skipped chemo, and we are skipping chemo until after my 2nd opinion on the surgery. I told the 'assistant' that I was concerned to be NOT getting chemo these past couple of weeks and perhaps a couple more weeks until I get to Fox Chase, because the lymph node under my arm was growing and lit up on the PET scan an incredible 17 (& I know anything lighting up brighter than 3.5 SUV is considered probably malignant). She said a very high uptake like that meant that the cancer there is dividing very rapidly & that's why it sucks up the glucose solution given for the PET, because it needs the sugar to support the rapid celll division. But what was interesting is that she said "That's probably why they all want you to do chemo instead of surgery: WHEN CELLS ARE DIVIDING VERY RAPIDLY, CHEMO WORKS AT ITS BEST." And I can see the sense of that, as some chemos kill just as the cells divide, and other chemos interrupt the cell division process, etc. Anyhow, I take this to mean if you have a high SUV # on your PET, chemo may be a really effective option. Just an interesting side note I forgot to toss out.

    Now that I have calmed down a little, I have to say that all this worry that the nodes could grow and pres on nerves or the spine and cause partial paralysis,.... Honestly I've never seen ANY posts on this Board or the ovarian board about that happening to anyone. Have you? I'm not going to let that keep me awake at night! M

    linda, tell your doctor to calm down!

    it seems to me that your doctor was telling you every possible thing that could ever happen; much like when we sign a release for an anesthetic, and they go over every possible contingency. please, please, DO NOT worry about the pressing on the nerves/partial paralysis, i've never heard of it here either. i frankly do not know why your doctor felt the need to go over all that with you; i honestly think it was to relieve his own anxiety and pass it on to you (in psychology that phenomenon is called projective identification--where one person unloads his anxiety onto another and the other picks it up.) now is definitely the time to give it back to the doctor. i understand the rationale for not doing surgery; though am very interested in what the second opinion has to say. i do wonder about radiation, though don't know much about that. i can also see that possibly a new chemo would do the trick. sure wish we knew what the "right" decision is; but all you can do is amass all the information available, and use your own best judgement. in any case, we are behind you all the way.

    hugs and sisterhood,
    maggie
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408

    Another tidbit I forgot that the oncology nurse said.
    Because my gyne-ons is also the head of Women's Health & a very big shot at the hospital, he first has an oncology nurse or P.A. come in and talk through everything with the patient. Because I was getting my PET scan last week, we skipped chemo, and we are skipping chemo until after my 2nd opinion on the surgery. I told the 'assistant' that I was concerned to be NOT getting chemo these past couple of weeks and perhaps a couple more weeks until I get to Fox Chase, because the lymph node under my arm was growing and lit up on the PET scan an incredible 17 (& I know anything lighting up brighter than 3.5 SUV is considered probably malignant). She said a very high uptake like that meant that the cancer there is dividing very rapidly & that's why it sucks up the glucose solution given for the PET, because it needs the sugar to support the rapid celll division. But what was interesting is that she said "That's probably why they all want you to do chemo instead of surgery: WHEN CELLS ARE DIVIDING VERY RAPIDLY, CHEMO WORKS AT ITS BEST." And I can see the sense of that, as some chemos kill just as the cells divide, and other chemos interrupt the cell division process, etc. Anyhow, I take this to mean if you have a high SUV # on your PET, chemo may be a really effective option. Just an interesting side note I forgot to toss out.

    Now that I have calmed down a little, I have to say that all this worry that the nodes could grow and pres on nerves or the spine and cause partial paralysis,.... Honestly I've never seen ANY posts on this Board or the ovarian board about that happening to anyone. Have you? I'm not going to let that keep me awake at night! M

    Geez Linda
    That was quite an appointment you had...the good, the bad and the ugly :0

    Sending peaceful vibrations your way....hope your appt with Fox Chase comes soon!!!

    Hang in and go be one with the Garden!!

    Laurie
  • nempark
    nempark Member Posts: 681

    No appt. yet at Fox Chase, but VERY informative appt locally.
    I picked up the CD that my local hospital made of all my 2010 CT/PETs and that needle biopsy to take with me to Fox Chase, but they haven't called me yet with an appointment. I will call them Monday if I don't hear from them today. Meanwhile I had an appointment for my 3-month regular internal with my gyne-onc this morning, and I'm still shaken by our frank conversation. The GOOD NEWS is that all look good from my internal/rectal physical exam. But the rest of the conversation was information (almost TMI!) and disturbing.

    We talked about my assumption that if we leave the underarm lymph node in, it may grow larger and start causing me pain, but that by then my platelet and nuetrofils will be too compromised by the chemo for them to safely do surgery. My gyne-onc said that is a possibility of course and that if that node grows uncontrolled it could press on a nerve and possible cause me to lose some use of that arm. (!!!!???!!!) We talked about the extended overall survival of having salvage surgery that would remove all measurable evidence of the cancer, which I had read in a recent study increases the statistical overall survival from 13 months to 30 months. For me that would also involve removing that para-aortic lymph node that keeps lighting up on every other PET scan. He said that my involved para-aortic node is right by an artery (which I assume is what para-aortic means, right???) and very close to my spine and 1 kidney and that this would be extensive dangerous surgery. I knew that, but he went on to say, "but if we can't get that node under control and it keeps growing it could press on your spine and cause some paralysis (!!!???!!!) ; or if it gets into that aorta I don't even want to paint you that scenario." (!!!???!!!) He said that the Geisinger tumor board was advising against the dual surgery for me because I probably would still have microscopic cancer cells elsewhere and still have cancer, and would probably need 5 to 6 weeks to heal from surgery before I was able to get back into chemo. He said that he had recommended radiation of both areas for me, but that my radiation-onc was against that. And he said if Fox Chase recommended surgery for me, and I wanted to go for it, he would advocate for me at Geisinger for them to do the surgery, because my case is so unusual and I am so strong.

    I asked about the taxol and why it stopped working for me after 23 rounds total. He said when they prescribe a chemo that attacks through the front door, after time the cancer learns to shut that front door; and then they have to attack through a back door or a window (by trying a new chemo). He said sometimes the cancer learns to shut ALL the doors and windows at once, and no chemo will work, but that we currently have no reason to believe that is true for me. And he said that after several other chemos we may even be able to go BACK to taxol as the cancer will no longer be able to keep the front door shut (t push that analogy).

    Seems like a 'damned if you do; damned if you don't scenario. I'm anxious to see what Fox Chase has to say and have no idea whether I want surgery now or what to do. But I am glad to be getting a clear picture of my options. Still, Id never thought about some of the grim things that could happen if chemo or radiation or surgery can't get those lymph nodes under control, and it is scary for sure.

    Linda check this out!!!!!!
    My friend was diagnosed with leukemia and was given nine months to live. Doctors told her that they couldn't do anything for her, she should go home and make her plans. Guess what? that was 16 years ago. So there, they don't know everything. She did natural herbs. You are a fighter and you will be able to get those lymph nodes control. Let's wait and see what Fox Chase's plans are. You are in good hands and this too shall pass. Love and good health to you. June
  • bea-mil
    bea-mil Member Posts: 108

    Another tidbit I forgot that the oncology nurse said.
    Because my gyne-ons is also the head of Women's Health & a very big shot at the hospital, he first has an oncology nurse or P.A. come in and talk through everything with the patient. Because I was getting my PET scan last week, we skipped chemo, and we are skipping chemo until after my 2nd opinion on the surgery. I told the 'assistant' that I was concerned to be NOT getting chemo these past couple of weeks and perhaps a couple more weeks until I get to Fox Chase, because the lymph node under my arm was growing and lit up on the PET scan an incredible 17 (& I know anything lighting up brighter than 3.5 SUV is considered probably malignant). She said a very high uptake like that meant that the cancer there is dividing very rapidly & that's why it sucks up the glucose solution given for the PET, because it needs the sugar to support the rapid celll division. But what was interesting is that she said "That's probably why they all want you to do chemo instead of surgery: WHEN CELLS ARE DIVIDING VERY RAPIDLY, CHEMO WORKS AT ITS BEST." And I can see the sense of that, as some chemos kill just as the cells divide, and other chemos interrupt the cell division process, etc. Anyhow, I take this to mean if you have a high SUV # on your PET, chemo may be a really effective option. Just an interesting side note I forgot to toss out.

    Now that I have calmed down a little, I have to say that all this worry that the nodes could grow and pres on nerves or the spine and cause partial paralysis,.... Honestly I've never seen ANY posts on this Board or the ovarian board about that happening to anyone. Have you? I'm not going to let that keep me awake at night! M

    you received an overwhelming ‘false no hope'
    There is a famous physician and author named Bernie Segal who has a remarkable quote about faith and hope; he says, “It is better to give false hope than it is to give false ‘no hope.’” It sounds to me that you received an overwhelming dose of what very well may be ‘false no hope'.

    "Positive thought creates an environment that is conducive for healing. In modern lingo it is called the psychosomatic relationship." Focus on that relationship between your mind and your body and plug in positive-hopeful messages.


    Maybe you would like to read some of his books:
    http://www.berniesiegelmd.com/bernie_siegel.htm
  • llight
    llight Member Posts: 99

    Another tidbit I forgot that the oncology nurse said.
    Because my gyne-ons is also the head of Women's Health & a very big shot at the hospital, he first has an oncology nurse or P.A. come in and talk through everything with the patient. Because I was getting my PET scan last week, we skipped chemo, and we are skipping chemo until after my 2nd opinion on the surgery. I told the 'assistant' that I was concerned to be NOT getting chemo these past couple of weeks and perhaps a couple more weeks until I get to Fox Chase, because the lymph node under my arm was growing and lit up on the PET scan an incredible 17 (& I know anything lighting up brighter than 3.5 SUV is considered probably malignant). She said a very high uptake like that meant that the cancer there is dividing very rapidly & that's why it sucks up the glucose solution given for the PET, because it needs the sugar to support the rapid celll division. But what was interesting is that she said "That's probably why they all want you to do chemo instead of surgery: WHEN CELLS ARE DIVIDING VERY RAPIDLY, CHEMO WORKS AT ITS BEST." And I can see the sense of that, as some chemos kill just as the cells divide, and other chemos interrupt the cell division process, etc. Anyhow, I take this to mean if you have a high SUV # on your PET, chemo may be a really effective option. Just an interesting side note I forgot to toss out.

    Now that I have calmed down a little, I have to say that all this worry that the nodes could grow and pres on nerves or the spine and cause partial paralysis,.... Honestly I've never seen ANY posts on this Board or the ovarian board about that happening to anyone. Have you? I'm not going to let that keep me awake at night! M

    Goodness gracious
    I'm so sorry you're dealing with all this. And that you got so bombarded by your doctor. Hopefully you will get an appt. at Fox Chase soon.

    You're in my thoughts and prayers.
  • kkstef
    kkstef Member Posts: 688

    linda, tell your doctor to calm down!

    it seems to me that your doctor was telling you every possible thing that could ever happen; much like when we sign a release for an anesthetic, and they go over every possible contingency. please, please, DO NOT worry about the pressing on the nerves/partial paralysis, i've never heard of it here either. i frankly do not know why your doctor felt the need to go over all that with you; i honestly think it was to relieve his own anxiety and pass it on to you (in psychology that phenomenon is called projective identification--where one person unloads his anxiety onto another and the other picks it up.) now is definitely the time to give it back to the doctor. i understand the rationale for not doing surgery; though am very interested in what the second opinion has to say. i do wonder about radiation, though don't know much about that. i can also see that possibly a new chemo would do the trick. sure wish we knew what the "right" decision is; but all you can do is amass all the information available, and use your own best judgement. in any case, we are behind you all the way.

    hugs and sisterhood,
    maggie

    Too much info??
    I agree with Maggie and Bea-mil....am thinking the Dr. overloaded you! It is not unlike some of those inserts with medications....They list every POSSIBLE (although many times remote) possible side effects. We can all get run over by a car tomorrow, have a heart attack or whatever. I am thinking too that he passed some of his anxiety on!

    You are a sharp person....wade through the info, and discard that which seems "far-fetched". You will make the right decision!!

    Hugs...Karen
  • Ro10
    Ro10 Member Posts: 1,561

    No appt. yet at Fox Chase, but VERY informative appt locally.
    I picked up the CD that my local hospital made of all my 2010 CT/PETs and that needle biopsy to take with me to Fox Chase, but they haven't called me yet with an appointment. I will call them Monday if I don't hear from them today. Meanwhile I had an appointment for my 3-month regular internal with my gyne-onc this morning, and I'm still shaken by our frank conversation. The GOOD NEWS is that all look good from my internal/rectal physical exam. But the rest of the conversation was information (almost TMI!) and disturbing.

    We talked about my assumption that if we leave the underarm lymph node in, it may grow larger and start causing me pain, but that by then my platelet and nuetrofils will be too compromised by the chemo for them to safely do surgery. My gyne-onc said that is a possibility of course and that if that node grows uncontrolled it could press on a nerve and possible cause me to lose some use of that arm. (!!!!???!!!) We talked about the extended overall survival of having salvage surgery that would remove all measurable evidence of the cancer, which I had read in a recent study increases the statistical overall survival from 13 months to 30 months. For me that would also involve removing that para-aortic lymph node that keeps lighting up on every other PET scan. He said that my involved para-aortic node is right by an artery (which I assume is what para-aortic means, right???) and very close to my spine and 1 kidney and that this would be extensive dangerous surgery. I knew that, but he went on to say, "but if we can't get that node under control and it keeps growing it could press on your spine and cause some paralysis (!!!???!!!) ; or if it gets into that aorta I don't even want to paint you that scenario." (!!!???!!!) He said that the Geisinger tumor board was advising against the dual surgery for me because I probably would still have microscopic cancer cells elsewhere and still have cancer, and would probably need 5 to 6 weeks to heal from surgery before I was able to get back into chemo. He said that he had recommended radiation of both areas for me, but that my radiation-onc was against that. And he said if Fox Chase recommended surgery for me, and I wanted to go for it, he would advocate for me at Geisinger for them to do the surgery, because my case is so unusual and I am so strong.

    I asked about the taxol and why it stopped working for me after 23 rounds total. He said when they prescribe a chemo that attacks through the front door, after time the cancer learns to shut that front door; and then they have to attack through a back door or a window (by trying a new chemo). He said sometimes the cancer learns to shut ALL the doors and windows at once, and no chemo will work, but that we currently have no reason to believe that is true for me. And he said that after several other chemos we may even be able to go BACK to taxol as the cancer will no longer be able to keep the front door shut (t push that analogy).

    Seems like a 'damned if you do; damned if you don't scenario. I'm anxious to see what Fox Chase has to say and have no idea whether I want surgery now or what to do. But I am glad to be getting a clear picture of my options. Still, Id never thought about some of the grim things that could happen if chemo or radiation or surgery can't get those lymph nodes under control, and it is scary for sure.

    Wow Linda what information you received
    You certainly got a lot to think about didn't you. I agree it was probably information overload. I think the lymph node would have to grow significantly to cause paralysis. I know that the lymph system travels through the body much like the circulatory system does. So the possibility of microscopic cancer cells being in other places can happen. That is what is scary about lymph nodes being involved. That is why chemo works as it travels through the body.

    I hope you get your appointment with Fox Chase to get their opinion. That way you can decide how you want to proceed with treatment. I really wish you could get a break from treatment, as you have never really gotten a break.

    You continue to have such a positive attitude and are an inspiration to all of us. Keep up all your hard work, and continue to enjoy your family and life. In peace and caring.