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

lindaprocopio
lindaprocopio Member Posts: 1,980
edited March 2014 in Uterine Cancer #1
When no one called me back after I phoned for the results of my CA125 labs taken yesterday before chemo, I knew it was going to be bad news because the nurses LOVE to call with GOOD news. Bad news alwasy warrants a call from my oncologist, and he doesn't call until he has a plan of action to suggest as consolation, so the call comes much later. So I called back at 1PM and told the nurse that I was a big girl and would be fine with her giving nme at least the new number. She told me and that Dr. White had a note in there that he would be phoning me. Now I'm curious what 'the plan' will be. This is the 1st actual rise in CA125 since I started back on the weekly taxol, and I've done 7 rounds in this cycle so far. Last week I only had a drop of 1/2 point, so this is the 1st time it went up. And it didn't really spike like it did when I had my recurrences, but maybe it wouldn't because I am in active treatment now. I will be curious to see if he wants me to do 1 more round of taxol and get new labs befire we jump ship here and switch to Doxil, since the number rise isn't that great. When we talked about the 'what ifs' yesterday, he said he'd want a new CT/PET done before starting Doxil, and I know that a MUGGA scan of the heart is usually done before Doxil also. So do I stay on the taxol during the couple of weeks it may take to get these tests done? Or do I get a little chemo break at a time when my cancer is probably active and therefore dangerous? I guess I won't know until he calls.

Gotta dash out for my 2PM Nuepogen shot, but I'll post again when I know more. & I want to tell you what I learned from the lymphpdema specialist this morning, too.

(Chatty Linda on her post-chemo steroid high!!) BLUSH
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Comments

  • bea-mil
    bea-mil Member Posts: 108
    Linda, please do not jump
    Linda, please do not jump into any conclusion. Wait for your doctor opinion and stay positive. Sometimes CA125 can be elevated due to some inflammation in the body caused by other problem.
    Be positive please.
    I hope for the best for you.
  • jazzy1
    jazzy1 Member Posts: 1,379
    bea-mil said:

    Linda, please do not jump
    Linda, please do not jump into any conclusion. Wait for your doctor opinion and stay positive. Sometimes CA125 can be elevated due to some inflammation in the body caused by other problem.
    Be positive please.
    I hope for the best for you.

    Be patient and wait for doc!
    Linda,

    I ditto what bea-mil mentioned too. The assistant RN in my oncol office told me that even if a CA-125 moves does'nt mean bad... other "minor" things can cause it such as inflammation,etc. In fact some times can really jump in certain individuals and end up being okay....each of us is different and show a pattern on rating our cancer with CA-125 numbers.

    Hang in there as you're such a fighter....
    Jan
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    jazzy1 said:

    Be patient and wait for doc!
    Linda,

    I ditto what bea-mil mentioned too. The assistant RN in my oncol office told me that even if a CA-125 moves does'nt mean bad... other "minor" things can cause it such as inflammation,etc. In fact some times can really jump in certain individuals and end up being okay....each of us is different and show a pattern on rating our cancer with CA-125 numbers.

    Hang in there as you're such a fighter....
    Jan

    My oncologist called with 'the plan'.
    I knew he'd call at 4:30 at the end of his work day. My chemo oncologist said that before we do anything, he wants me to have a CT/Pet and he'll set that up for next week, and also schedule an appointment with him 2 days following the scan to talk about what it shows. He's cancelled my taxol for Monday. He said that CA125 can be a fickle indicator and that the CT/Pet may show that the taxol is indeed working and we will stick with it in that case. He said that if the scan shows any disease progression or even that the nodes look the same as at the start of the taxol, we'll get me a MUGGA scan and probably switch to Doxil. But both times in the past when I had bowel inflammation, my CA125 went up, and my bowels are not great right now, so it could just be that. I'm not freaked out or anything. I just was hoping for a steady drop each week on the CA125 that would result in a chemo break/remission at the end of August, and now that may not happen. Or it still might. We'll know when I get the PET results. I was due for a CT/PET in late August so this isn't too far away from that routine scan. Doxil may seem like a chemo break to me after having to have taxol EVERY WEEK, as Doxil is just given once every 28 days, so there will be a lot less trips to the clinic.

    I'll put my lymphodema info tidbits in another post. Thanks, everyone. I'm really okay with this.
  • Ro10
    Ro10 Member Posts: 1,561

    My oncologist called with 'the plan'.
    I knew he'd call at 4:30 at the end of his work day. My chemo oncologist said that before we do anything, he wants me to have a CT/Pet and he'll set that up for next week, and also schedule an appointment with him 2 days following the scan to talk about what it shows. He's cancelled my taxol for Monday. He said that CA125 can be a fickle indicator and that the CT/Pet may show that the taxol is indeed working and we will stick with it in that case. He said that if the scan shows any disease progression or even that the nodes look the same as at the start of the taxol, we'll get me a MUGGA scan and probably switch to Doxil. But both times in the past when I had bowel inflammation, my CA125 went up, and my bowels are not great right now, so it could just be that. I'm not freaked out or anything. I just was hoping for a steady drop each week on the CA125 that would result in a chemo break/remission at the end of August, and now that may not happen. Or it still might. We'll know when I get the PET results. I was due for a CT/PET in late August so this isn't too far away from that routine scan. Doxil may seem like a chemo break to me after having to have taxol EVERY WEEK, as Doxil is just given once every 28 days, so there will be a lot less trips to the clinic.

    I'll put my lymphodema info tidbits in another post. Thanks, everyone. I'm really okay with this.

    Sorry to hear about the CA 125 going up
    Does your onocologist believe your CA 125 has to be below 35? If the PET scan does not show any disease progression, could your "New normal" be in the 70's? Sorry to hear you are still having some bowel problems.

    I pray that your PET scan does not show any new progression. So you get a short break with the Taxol being cancelled for Monday. You are such a trouper. I admire you so much. You remain in my prayers. In peace and caring.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Ro10 said:

    Sorry to hear about the CA 125 going up
    Does your onocologist believe your CA 125 has to be below 35? If the PET scan does not show any disease progression, could your "New normal" be in the 70's? Sorry to hear you are still having some bowel problems.

    I pray that your PET scan does not show any new progression. So you get a short break with the Taxol being cancelled for Monday. You are such a trouper. I admire you so much. You remain in my prayers. In peace and caring.

    CT/PET scan scheduled for Thursday 8/19; results on Mon 8/23.
    Hi, Ro! My oncologist thought that my 'new normal' CA125 was in the mid-40's since I had a NED CT/PET scan when my CA125 was in the mid-40's last spring. There is a CHANCE that my CT/PET will be good this time too, but with a RISING Ca125, I'll be surprised (THRILLED! but surprised!!) if the CT/PET doesn't show disease progression.

    I've just gotten off the phone with the 'appointments' people at the cancer center and now have a solid plan for the next 2 weeks. My CA125 went up 7 points on Monday’s pre-chemo lab, so they’ve cancelled my taxol chemo for next week and have set an appointment for me on Thursday morning (8/19/10) for a CT/PET scan to see what’s going on. I’ll be getting my port accessed and another CA125 taken Thursday at 9:15 AM, and start drinking the contrast for the CT/PET at 9:45am Thursday. Procopio Fundraising is giving a grantwriting workshop the next day and I should feel fine for that. And a bunch of my family is coming for the weekend to visit me and attend a Celtic Festival together on Saturday at a local winery, and that will be a very WELCOME distraction as I await my results. Waiting is soooooo hard!

    Then I see my chemo-oncologist on Monday 8/23 at 2PM for the scan results and to make a plan if I need to change chemos or need any other treatments (surgery, radiation; HOPE NOT!). I already had a long-standing appointment with my wonderful gynecologic-oncologist on Friday Aug. 27th, so I’ll be able to get a 2nd opinion on my scan and any new treatment plan at that time.

    So it looks like I have next week off of chemo and no Nuepogen shots next week anyway. & there's no use worrying ahead of time. It is what it is, and I am confident that we’ll come up with something else that works if taxol is no longer effective on me. (I’ve had 23 total infusions of it since November 2008, so maybe it has run its course for me.) Doxil is what we've discussed and that is given every 28 days instead of the taxol I have been getting every 7 days. So although it is a harsher chemo with more potential side effects, it will be very nice getting a full month between chemos if we go that route. I'll keep you posted on how the scan turns out. Nothing scares me anymore, I swear! (I have to remember those brave words until I get my scan results!)
  • lociee
    lociee Member Posts: 102

    CT/PET scan scheduled for Thursday 8/19; results on Mon 8/23.
    Hi, Ro! My oncologist thought that my 'new normal' CA125 was in the mid-40's since I had a NED CT/PET scan when my CA125 was in the mid-40's last spring. There is a CHANCE that my CT/PET will be good this time too, but with a RISING Ca125, I'll be surprised (THRILLED! but surprised!!) if the CT/PET doesn't show disease progression.

    I've just gotten off the phone with the 'appointments' people at the cancer center and now have a solid plan for the next 2 weeks. My CA125 went up 7 points on Monday’s pre-chemo lab, so they’ve cancelled my taxol chemo for next week and have set an appointment for me on Thursday morning (8/19/10) for a CT/PET scan to see what’s going on. I’ll be getting my port accessed and another CA125 taken Thursday at 9:15 AM, and start drinking the contrast for the CT/PET at 9:45am Thursday. Procopio Fundraising is giving a grantwriting workshop the next day and I should feel fine for that. And a bunch of my family is coming for the weekend to visit me and attend a Celtic Festival together on Saturday at a local winery, and that will be a very WELCOME distraction as I await my results. Waiting is soooooo hard!

    Then I see my chemo-oncologist on Monday 8/23 at 2PM for the scan results and to make a plan if I need to change chemos or need any other treatments (surgery, radiation; HOPE NOT!). I already had a long-standing appointment with my wonderful gynecologic-oncologist on Friday Aug. 27th, so I’ll be able to get a 2nd opinion on my scan and any new treatment plan at that time.

    So it looks like I have next week off of chemo and no Nuepogen shots next week anyway. & there's no use worrying ahead of time. It is what it is, and I am confident that we’ll come up with something else that works if taxol is no longer effective on me. (I’ve had 23 total infusions of it since November 2008, so maybe it has run its course for me.) Doxil is what we've discussed and that is given every 28 days instead of the taxol I have been getting every 7 days. So although it is a harsher chemo with more potential side effects, it will be very nice getting a full month between chemos if we go that route. I'll keep you posted on how the scan turns out. Nothing scares me anymore, I swear! (I have to remember those brave words until I get my scan results!)

    Doxil
    Hi Linda - I took Doxil for several months. I found it the most non-evasive drug so far. It's quick and easy - your hair stays put - I just did not find anything harsh about it. Nothing like the carbo/taxol - or the radiation. Doxil is a sweet drug. In and out - no nuepogen - nothing. Actually, I felt like I wasn't being treated - but the #'s did go down! Good Luck. I'll be interested in your reaction.
    Mia
  • thank you
    thank you Member Posts: 77

    CT/PET scan scheduled for Thursday 8/19; results on Mon 8/23.
    Hi, Ro! My oncologist thought that my 'new normal' CA125 was in the mid-40's since I had a NED CT/PET scan when my CA125 was in the mid-40's last spring. There is a CHANCE that my CT/PET will be good this time too, but with a RISING Ca125, I'll be surprised (THRILLED! but surprised!!) if the CT/PET doesn't show disease progression.

    I've just gotten off the phone with the 'appointments' people at the cancer center and now have a solid plan for the next 2 weeks. My CA125 went up 7 points on Monday’s pre-chemo lab, so they’ve cancelled my taxol chemo for next week and have set an appointment for me on Thursday morning (8/19/10) for a CT/PET scan to see what’s going on. I’ll be getting my port accessed and another CA125 taken Thursday at 9:15 AM, and start drinking the contrast for the CT/PET at 9:45am Thursday. Procopio Fundraising is giving a grantwriting workshop the next day and I should feel fine for that. And a bunch of my family is coming for the weekend to visit me and attend a Celtic Festival together on Saturday at a local winery, and that will be a very WELCOME distraction as I await my results. Waiting is soooooo hard!

    Then I see my chemo-oncologist on Monday 8/23 at 2PM for the scan results and to make a plan if I need to change chemos or need any other treatments (surgery, radiation; HOPE NOT!). I already had a long-standing appointment with my wonderful gynecologic-oncologist on Friday Aug. 27th, so I’ll be able to get a 2nd opinion on my scan and any new treatment plan at that time.

    So it looks like I have next week off of chemo and no Nuepogen shots next week anyway. & there's no use worrying ahead of time. It is what it is, and I am confident that we’ll come up with something else that works if taxol is no longer effective on me. (I’ve had 23 total infusions of it since November 2008, so maybe it has run its course for me.) Doxil is what we've discussed and that is given every 28 days instead of the taxol I have been getting every 7 days. So although it is a harsher chemo with more potential side effects, it will be very nice getting a full month between chemos if we go that route. I'll keep you posted on how the scan turns out. Nothing scares me anymore, I swear! (I have to remember those brave words until I get my scan results!)

    my best wishes for good
    my best wishes for good results
  • thank you
    thank you Member Posts: 77

    CT/PET scan scheduled for Thursday 8/19; results on Mon 8/23.
    Hi, Ro! My oncologist thought that my 'new normal' CA125 was in the mid-40's since I had a NED CT/PET scan when my CA125 was in the mid-40's last spring. There is a CHANCE that my CT/PET will be good this time too, but with a RISING Ca125, I'll be surprised (THRILLED! but surprised!!) if the CT/PET doesn't show disease progression.

    I've just gotten off the phone with the 'appointments' people at the cancer center and now have a solid plan for the next 2 weeks. My CA125 went up 7 points on Monday’s pre-chemo lab, so they’ve cancelled my taxol chemo for next week and have set an appointment for me on Thursday morning (8/19/10) for a CT/PET scan to see what’s going on. I’ll be getting my port accessed and another CA125 taken Thursday at 9:15 AM, and start drinking the contrast for the CT/PET at 9:45am Thursday. Procopio Fundraising is giving a grantwriting workshop the next day and I should feel fine for that. And a bunch of my family is coming for the weekend to visit me and attend a Celtic Festival together on Saturday at a local winery, and that will be a very WELCOME distraction as I await my results. Waiting is soooooo hard!

    Then I see my chemo-oncologist on Monday 8/23 at 2PM for the scan results and to make a plan if I need to change chemos or need any other treatments (surgery, radiation; HOPE NOT!). I already had a long-standing appointment with my wonderful gynecologic-oncologist on Friday Aug. 27th, so I’ll be able to get a 2nd opinion on my scan and any new treatment plan at that time.

    So it looks like I have next week off of chemo and no Nuepogen shots next week anyway. & there's no use worrying ahead of time. It is what it is, and I am confident that we’ll come up with something else that works if taxol is no longer effective on me. (I’ve had 23 total infusions of it since November 2008, so maybe it has run its course for me.) Doxil is what we've discussed and that is given every 28 days instead of the taxol I have been getting every 7 days. So although it is a harsher chemo with more potential side effects, it will be very nice getting a full month between chemos if we go that route. I'll keep you posted on how the scan turns out. Nothing scares me anymore, I swear! (I have to remember those brave words until I get my scan results!)

    my best wishes for good
    my best wishes for good results
  • maggie_wilson
    maggie_wilson Member Posts: 596

    CT/PET scan scheduled for Thursday 8/19; results on Mon 8/23.
    Hi, Ro! My oncologist thought that my 'new normal' CA125 was in the mid-40's since I had a NED CT/PET scan when my CA125 was in the mid-40's last spring. There is a CHANCE that my CT/PET will be good this time too, but with a RISING Ca125, I'll be surprised (THRILLED! but surprised!!) if the CT/PET doesn't show disease progression.

    I've just gotten off the phone with the 'appointments' people at the cancer center and now have a solid plan for the next 2 weeks. My CA125 went up 7 points on Monday’s pre-chemo lab, so they’ve cancelled my taxol chemo for next week and have set an appointment for me on Thursday morning (8/19/10) for a CT/PET scan to see what’s going on. I’ll be getting my port accessed and another CA125 taken Thursday at 9:15 AM, and start drinking the contrast for the CT/PET at 9:45am Thursday. Procopio Fundraising is giving a grantwriting workshop the next day and I should feel fine for that. And a bunch of my family is coming for the weekend to visit me and attend a Celtic Festival together on Saturday at a local winery, and that will be a very WELCOME distraction as I await my results. Waiting is soooooo hard!

    Then I see my chemo-oncologist on Monday 8/23 at 2PM for the scan results and to make a plan if I need to change chemos or need any other treatments (surgery, radiation; HOPE NOT!). I already had a long-standing appointment with my wonderful gynecologic-oncologist on Friday Aug. 27th, so I’ll be able to get a 2nd opinion on my scan and any new treatment plan at that time.

    So it looks like I have next week off of chemo and no Nuepogen shots next week anyway. & there's no use worrying ahead of time. It is what it is, and I am confident that we’ll come up with something else that works if taxol is no longer effective on me. (I’ve had 23 total infusions of it since November 2008, so maybe it has run its course for me.) Doxil is what we've discussed and that is given every 28 days instead of the taxol I have been getting every 7 days. So although it is a harsher chemo with more potential side effects, it will be very nice getting a full month between chemos if we go that route. I'll keep you posted on how the scan turns out. Nothing scares me anymore, I swear! (I have to remember those brave words until I get my scan results!)

    linda

    will be thinking especially of you on 8/23 and am hoping for the best possible results.

    this ca 125 mishagos (craziness) is so unreliable and unpredictable so much of the time it's hard to really believe it means anything. though, of course, i know it seems to be a reliable indicator for some. my latest ca 125s are around 21, but there's a slight trend up by a couple of points the last two times. sort of worried about another ca 125 even if it's up only a little. to my chemo doc, it's meaningful because she looks at trends, not exact numbers. so even if next ca 125 is below 35 or whatever is considered "normal" it doesn't necessarily mean all is well.

    i do believe you, that most of the time nothing scares you anymore....it's funny how we can get used to being on edge, anxious about the next test/scan, more resigned i think to a life so unlike the one we had before diagnosis, so we're less frightened if we get bad news. unfortunately, though i've certainly been enjoying my self lately, and taking lovely and fun trips, overall i don't really feel like i'm appreciating life more, or that each day i am so grateful to be alive. don't get me wrong, i am glad to be alive now, but the experience isn't a heightened one, that others have spoken of. feel more sad, a little pissed off, knowing this life, even as i know it now, probably won't last all that long, so i won't be seeing my one year old grand son, my 2 1/2 year old granddaughter, or my 9 year old granddaughter grow up. it's a real bummer, as far as i'm concerned, despite my exercising, good diet, tumeric and ginger, gratifying work, loving partner and family.....i guess i'm pretty grateful for what i've already had, and still have, but i just can't feel like living large. maybe i'm particularly feeling this way now because today is the first anniversary of my mother's death (at age 96!).

    sisterhood,
    maggie
  • GracieGold
    GracieGold Member Posts: 23

    linda

    will be thinking especially of you on 8/23 and am hoping for the best possible results.

    this ca 125 mishagos (craziness) is so unreliable and unpredictable so much of the time it's hard to really believe it means anything. though, of course, i know it seems to be a reliable indicator for some. my latest ca 125s are around 21, but there's a slight trend up by a couple of points the last two times. sort of worried about another ca 125 even if it's up only a little. to my chemo doc, it's meaningful because she looks at trends, not exact numbers. so even if next ca 125 is below 35 or whatever is considered "normal" it doesn't necessarily mean all is well.

    i do believe you, that most of the time nothing scares you anymore....it's funny how we can get used to being on edge, anxious about the next test/scan, more resigned i think to a life so unlike the one we had before diagnosis, so we're less frightened if we get bad news. unfortunately, though i've certainly been enjoying my self lately, and taking lovely and fun trips, overall i don't really feel like i'm appreciating life more, or that each day i am so grateful to be alive. don't get me wrong, i am glad to be alive now, but the experience isn't a heightened one, that others have spoken of. feel more sad, a little pissed off, knowing this life, even as i know it now, probably won't last all that long, so i won't be seeing my one year old grand son, my 2 1/2 year old granddaughter, or my 9 year old granddaughter grow up. it's a real bummer, as far as i'm concerned, despite my exercising, good diet, tumeric and ginger, gratifying work, loving partner and family.....i guess i'm pretty grateful for what i've already had, and still have, but i just can't feel like living large. maybe i'm particularly feeling this way now because today is the first anniversary of my mother's death (at age 96!).

    sisterhood,
    maggie

    depression
    HI Maggie,
    I have been living with cancer since 2002. I do not feel that I needed cancer as that "wake-up call" that some people have experienced to remind them to enjoy each day. I learned that lesson when my first husband died when I was 26 and he was 28.

    I have found that for me, taking St John's Wort (herbal from natural foods store) really helps me to more fully enjoy each day. I take 700 mg twice a day. It can take up to a month to improve the mood. I was not seriously depressed--life just had an underlying sadness that I could not shake and St John's Wort helps me to alleviate that. My onc, my primary care doc and my naturopath are all on board with me taking this supplement. I did have to stop taking it for a month around my hysterectomy--and I really noticed a difference.
    Best wishes for a happier future...
  • Kaleena
    Kaleena Member Posts: 2,059

    depression
    HI Maggie,
    I have been living with cancer since 2002. I do not feel that I needed cancer as that "wake-up call" that some people have experienced to remind them to enjoy each day. I learned that lesson when my first husband died when I was 26 and he was 28.

    I have found that for me, taking St John's Wort (herbal from natural foods store) really helps me to more fully enjoy each day. I take 700 mg twice a day. It can take up to a month to improve the mood. I was not seriously depressed--life just had an underlying sadness that I could not shake and St John's Wort helps me to alleviate that. My onc, my primary care doc and my naturopath are all on board with me taking this supplement. I did have to stop taking it for a month around my hysterectomy--and I really noticed a difference.
    Best wishes for a happier future...

    Linda, thinking about you today.
    Hello Linda:

    I hope all went well with your PET scan today. You have such a positive attitude. Also, have you heard anything from Diane? Keep us posted.

    Kathy
  • maggie_wilson
    maggie_wilson Member Posts: 596

    depression
    HI Maggie,
    I have been living with cancer since 2002. I do not feel that I needed cancer as that "wake-up call" that some people have experienced to remind them to enjoy each day. I learned that lesson when my first husband died when I was 26 and he was 28.

    I have found that for me, taking St John's Wort (herbal from natural foods store) really helps me to more fully enjoy each day. I take 700 mg twice a day. It can take up to a month to improve the mood. I was not seriously depressed--life just had an underlying sadness that I could not shake and St John's Wort helps me to alleviate that. My onc, my primary care doc and my naturopath are all on board with me taking this supplement. I did have to stop taking it for a month around my hysterectomy--and I really noticed a difference.
    Best wishes for a happier future...

    thanx gracie

    i'm usually a lot more upbeat than the last post, but do have my moments. i think yesterday had a lot to do with the fact that my mother died a year ago, in the middle of my chemo treatment, so i didn't have much time with her before she died. she knew i had had a hysterectomy, but did not know about the cancer, which i think was a good decision on our part. she died peacefully from pneumonia.

    so, better today, though still get anxious re: ca 125s and scans, etc. i'm glad to hear that you've been doing allright since 2002, may i ask what kind of cancer you've had? and what treatments?

    i do know about st john's wort, and it's always a possiblity,

    in any case, thanx so much for your response.

    sisterhood,
    maggie
  • GracieGold
    GracieGold Member Posts: 23

    thanx gracie

    i'm usually a lot more upbeat than the last post, but do have my moments. i think yesterday had a lot to do with the fact that my mother died a year ago, in the middle of my chemo treatment, so i didn't have much time with her before she died. she knew i had had a hysterectomy, but did not know about the cancer, which i think was a good decision on our part. she died peacefully from pneumonia.

    so, better today, though still get anxious re: ca 125s and scans, etc. i'm glad to hear that you've been doing allright since 2002, may i ask what kind of cancer you've had? and what treatments?

    i do know about st john's wort, and it's always a possiblity,

    in any case, thanx so much for your response.

    sisterhood,
    maggie

    My cancer saga
    Hi Maggie,
    I was diagnosed with indolent lymphoma in 2002 (at age 52) which appeared to be localized in one lymph node in my right thigh. I was treated with radiation only. We were hoping for a cure but in 2005, I discovered another lump near my left elbow. That time I had 3 sessions of R-CHOP chemo plus radiation to that area. A PET/CT scan in 2008 showed new lymph node "activity" so I had 4 rounds of once a week Rituxan over a 2 year period. I am in remission from lymphoma at this point. In April, my routine PET/CT scan for lymphoma showed activity in my uterus which was discovered to be UPSC stage 1A (first missed by a follow-up biopsy but caught by a pap smear!) I will have my second round of chemo for this (taxol and carbo) on Tuesday and then 2 more treatments plus brachytherapy radiation. My UPSC is really a good luck--bad luck situation. Bad luck to have it at all, good luck that it was caught early. I know that it is an aggressive cancer that can recur even though it appeared to be contained within the uterus. I was already doing all the extra healthy things that I could due to the lymphoma with diet, exercise, supplements, etc. I do believe that being healthy in all possible respects gives us all better chances for longer and healthier lives. There is no fairness to life that we can understand, but we still move forward. I don't want to leave any stone unturned that might lead to a healthier and better quality life for me, my family & friends and sister warriors!

    Glad to hear that you are feeling better. And my sympathies for the loss of your mother. I know that telling my mother(who is in "assisted living" 400 miles from my house)was one of the hardest things for me.

    Best wishes and hugs to all!
  • maggie_wilson
    maggie_wilson Member Posts: 596

    My cancer saga
    Hi Maggie,
    I was diagnosed with indolent lymphoma in 2002 (at age 52) which appeared to be localized in one lymph node in my right thigh. I was treated with radiation only. We were hoping for a cure but in 2005, I discovered another lump near my left elbow. That time I had 3 sessions of R-CHOP chemo plus radiation to that area. A PET/CT scan in 2008 showed new lymph node "activity" so I had 4 rounds of once a week Rituxan over a 2 year period. I am in remission from lymphoma at this point. In April, my routine PET/CT scan for lymphoma showed activity in my uterus which was discovered to be UPSC stage 1A (first missed by a follow-up biopsy but caught by a pap smear!) I will have my second round of chemo for this (taxol and carbo) on Tuesday and then 2 more treatments plus brachytherapy radiation. My UPSC is really a good luck--bad luck situation. Bad luck to have it at all, good luck that it was caught early. I know that it is an aggressive cancer that can recur even though it appeared to be contained within the uterus. I was already doing all the extra healthy things that I could due to the lymphoma with diet, exercise, supplements, etc. I do believe that being healthy in all possible respects gives us all better chances for longer and healthier lives. There is no fairness to life that we can understand, but we still move forward. I don't want to leave any stone unturned that might lead to a healthier and better quality life for me, my family & friends and sister warriors!

    Glad to hear that you are feeling better. And my sympathies for the loss of your mother. I know that telling my mother(who is in "assisted living" 400 miles from my house)was one of the hardest things for me.

    Best wishes and hugs to all!

    gracie

    that is quite a saga. so glad you're in remission from lymphoma now and that your upsc was caught so early. sounds like you're having the same chemo treatment as i did for upsc, though i had 6 sessions, and chose not to do radiation. sounds like you're having 4 sessions. is that correct? in any case, my best wishes for you; hope you get through the chemo in the best possible way. it's certainly true that there's no fairness in life--something that was quite clear long before i was diagnosed, and right as well about not wanting to leave any stone unturned re: living as healthy a life as possible. we do the best that we can do, and the rest is a crap shoot.
    thank you for your kind words re: the loss of my mother. i can imagine how hard it was for you to tell your mother re: your cancer. and how hard it was for her to learn of it. i know i'd much prefer it be me that has cancer than either of my children or grandchildren.

    sisterhood,
    maggie
  • jazzy1
    jazzy1 Member Posts: 1,379

    gracie

    that is quite a saga. so glad you're in remission from lymphoma now and that your upsc was caught so early. sounds like you're having the same chemo treatment as i did for upsc, though i had 6 sessions, and chose not to do radiation. sounds like you're having 4 sessions. is that correct? in any case, my best wishes for you; hope you get through the chemo in the best possible way. it's certainly true that there's no fairness in life--something that was quite clear long before i was diagnosed, and right as well about not wanting to leave any stone unturned re: living as healthy a life as possible. we do the best that we can do, and the rest is a crap shoot.
    thank you for your kind words re: the loss of my mother. i can imagine how hard it was for you to tell your mother re: your cancer. and how hard it was for her to learn of it. i know i'd much prefer it be me that has cancer than either of my children or grandchildren.

    sisterhood,
    maggie

    Maggie & Gracie
    We all try to take care of our bodies and wahla we hear the diagnosis of "cancer". Just doesn't seem like it's fair does it? Look at Linda how much care she took with her body what with great amounts of exercise and eating the wonderful fruits/veggies from her garden and facing cancer diagnosis as well. As you said Maggie, "do the best we can do, and the rest is a crap shoot" -- BINGO!! That's truly how I view the situation. I feel I must do something to help myself with eating and exercise to be IN CONTROL of the cancer.

    In reference to parents, my Mom has Alzheimers and I informed her last Feb '09 when diagnosed, which she remembered. This horrible disease causes her short-term memory to be lost, therefore, she just does't remember my cancer diagnosis. When I had no hair and it was coming in, my hubbie pulled off the wig to show my stubbs of hair, and mom was shocked. Didn't realize we had to start the subject of cancer over once more. Very sad!!! It breaks my heart to know mom isn't really with me on the cancer journey, therefore, her support is gone. I've gotten used to never bringing it up to her...why bother she'll be upset and forget 1 hour later.

    Glad we can all hang in together and give each other support on our cancer journey. You know research shows people who feel loved and have support during the cancer journey, have a better chance of getting thru it.

    Let's all join hands and hang on!!!!!! We can survive~
    Jan
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    jazzy1 said:

    Maggie & Gracie
    We all try to take care of our bodies and wahla we hear the diagnosis of "cancer". Just doesn't seem like it's fair does it? Look at Linda how much care she took with her body what with great amounts of exercise and eating the wonderful fruits/veggies from her garden and facing cancer diagnosis as well. As you said Maggie, "do the best we can do, and the rest is a crap shoot" -- BINGO!! That's truly how I view the situation. I feel I must do something to help myself with eating and exercise to be IN CONTROL of the cancer.

    In reference to parents, my Mom has Alzheimers and I informed her last Feb '09 when diagnosed, which she remembered. This horrible disease causes her short-term memory to be lost, therefore, she just does't remember my cancer diagnosis. When I had no hair and it was coming in, my hubbie pulled off the wig to show my stubbs of hair, and mom was shocked. Didn't realize we had to start the subject of cancer over once more. Very sad!!! It breaks my heart to know mom isn't really with me on the cancer journey, therefore, her support is gone. I've gotten used to never bringing it up to her...why bother she'll be upset and forget 1 hour later.

    Glad we can all hang in together and give each other support on our cancer journey. You know research shows people who feel loved and have support during the cancer journey, have a better chance of getting thru it.

    Let's all join hands and hang on!!!!!! We can survive~
    Jan

    I have UNOFFICIAL news on my CT/PET scan.
    Because I have friends at the hospital that are invaluable and high enough up to be able to give my CT/Pet scan a quick look-see before the 'official' scan results, I have some inkling of what my chemo-oncologist will be telling me tomorrow at my 2 PM appointment.

    First: the BAD news:
    The 2 lymph nodes that lit up on my scan 2 1/2 months ago, (and 7 rounds of weekly taxol ago!!), both lit up on the PET scan again, and are larger than they were at that time.

    But, the GOOD NEWS :
    The good news is that there is no cancer SPREAD. Although those 2 cancerous nodes are larger, the preliminary 'sneak peek' didn't show any cancer in all the places I feared (liver, stomach, lungs) and really no additional involved nodes. Soooooo, although the node under my arm is considerably larger and still lights up brightly, the para-aortic node that seems to wink on and off lit up every other scan, is still very small, although larger than it was. I'll try and gete the measurements tomorrow, for a more exact report.

    I will know more after my 2 PM appointment tomorrow with my chemo-onc, and will post. I don't yet have my pre-scan CA125 from Thursday, so that is something else I can factor in after tomorrow's meeting. I see my gyne-onc Friday for an internal exam and his opinion on my scan and treatment options. I think they'll both recommend Doxil, from what they've said.

    Meanwhile I had a GREAT weekend! My son came in Thursday evevning to help me give a grantwriting workshop that lasted from 9 to 4 on Friday, and he stayed the weekend. I also had my sister and step-mother in as overnight guests Saturday night, and all of us attended a Celtic Festival at an area winery Saturday, listening to Irish and Scottish bands all day and drinking wine and eating lots of good food, watching falconers, amdd men in kilts and visiting the crafts booths. My 'company' all left this morning for their own homes and I am tired but happy. Life is good!
  • daisy366
    daisy366 Member Posts: 1,458

    I have UNOFFICIAL news on my CT/PET scan.
    Because I have friends at the hospital that are invaluable and high enough up to be able to give my CT/Pet scan a quick look-see before the 'official' scan results, I have some inkling of what my chemo-oncologist will be telling me tomorrow at my 2 PM appointment.

    First: the BAD news:
    The 2 lymph nodes that lit up on my scan 2 1/2 months ago, (and 7 rounds of weekly taxol ago!!), both lit up on the PET scan again, and are larger than they were at that time.

    But, the GOOD NEWS :
    The good news is that there is no cancer SPREAD. Although those 2 cancerous nodes are larger, the preliminary 'sneak peek' didn't show any cancer in all the places I feared (liver, stomach, lungs) and really no additional involved nodes. Soooooo, although the node under my arm is considerably larger and still lights up brightly, the para-aortic node that seems to wink on and off lit up every other scan, is still very small, although larger than it was. I'll try and gete the measurements tomorrow, for a more exact report.

    I will know more after my 2 PM appointment tomorrow with my chemo-onc, and will post. I don't yet have my pre-scan CA125 from Thursday, so that is something else I can factor in after tomorrow's meeting. I see my gyne-onc Friday for an internal exam and his opinion on my scan and treatment options. I think they'll both recommend Doxil, from what they've said.

    Meanwhile I had a GREAT weekend! My son came in Thursday evevning to help me give a grantwriting workshop that lasted from 9 to 4 on Friday, and he stayed the weekend. I also had my sister and step-mother in as overnight guests Saturday night, and all of us attended a Celtic Festival at an area winery Saturday, listening to Irish and Scottish bands all day and drinking wine and eating lots of good food, watching falconers, amdd men in kilts and visiting the crafts booths. My 'company' all left this morning for their own homes and I am tired but happy. Life is good!

    Linda,
    If the 2 areas are concentrated in the nodes, is surgery an option for you??

    I will get my PET/CT on Sept 2. I'm curious to see what's going on with me, too!!

    Mary Ann
  • Ro10
    Ro10 Member Posts: 1,561

    I have UNOFFICIAL news on my CT/PET scan.
    Because I have friends at the hospital that are invaluable and high enough up to be able to give my CT/Pet scan a quick look-see before the 'official' scan results, I have some inkling of what my chemo-oncologist will be telling me tomorrow at my 2 PM appointment.

    First: the BAD news:
    The 2 lymph nodes that lit up on my scan 2 1/2 months ago, (and 7 rounds of weekly taxol ago!!), both lit up on the PET scan again, and are larger than they were at that time.

    But, the GOOD NEWS :
    The good news is that there is no cancer SPREAD. Although those 2 cancerous nodes are larger, the preliminary 'sneak peek' didn't show any cancer in all the places I feared (liver, stomach, lungs) and really no additional involved nodes. Soooooo, although the node under my arm is considerably larger and still lights up brightly, the para-aortic node that seems to wink on and off lit up every other scan, is still very small, although larger than it was. I'll try and gete the measurements tomorrow, for a more exact report.

    I will know more after my 2 PM appointment tomorrow with my chemo-onc, and will post. I don't yet have my pre-scan CA125 from Thursday, so that is something else I can factor in after tomorrow's meeting. I see my gyne-onc Friday for an internal exam and his opinion on my scan and treatment options. I think they'll both recommend Doxil, from what they've said.

    Meanwhile I had a GREAT weekend! My son came in Thursday evevning to help me give a grantwriting workshop that lasted from 9 to 4 on Friday, and he stayed the weekend. I also had my sister and step-mother in as overnight guests Saturday night, and all of us attended a Celtic Festival at an area winery Saturday, listening to Irish and Scottish bands all day and drinking wine and eating lots of good food, watching falconers, amdd men in kilts and visiting the crafts booths. My 'company' all left this morning for their own homes and I am tired but happy. Life is good!

    Linda glad you had a fun weekend with family
    Love your new picture. Your continue to look wonderful. Sorry to hear your nodes have not gotten any smaller. I was so hoping you would get a chemo-break for a while. Good luck at your doctor's appointment tomorrow. In peace and caring.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Ro10 said:

    Linda glad you had a fun weekend with family
    Love your new picture. Your continue to look wonderful. Sorry to hear your nodes have not gotten any smaller. I was so hoping you would get a chemo-break for a while. Good luck at your doctor's appointment tomorrow. In peace and caring.

    My OFFICIAL CT/PET results
    At my appointment today, my chemo-onc said that it looks like the taxol chemo I was getting has stopped working. My CA125 went up again, from 78 to 83 in the past week. I was hoping my August CT/PET scan would be clear, and would signal a chemo break for me, but that is not going to happen now.

    The official GOOD NEWS is that last Thursday's CT/PET showed that my cancer is still contained in the same couple of lymph nodes that it was on my last CT/PET scan 3 months ago, with no spread anywhere!! The bad news is that the lymph node under my arm is bigger (now over 2 cm) and lit up MUCH brighter on the PET scan, with an SUV of 17, which is significant (!!!) metabolic activity. And the para-aortic node that lit up last time, although still tiny (4 mm) is none-the-less larger and lit up again.

    The 3 oncologists on my local cancer team are still not recommending surgery, but my husband and I want to get an outside opinion before we totally let go of that idea. My chemo-oncologist suggested the Fox Chase Cancer Center in Philadelphia (about a 3 hour drive from here) and a Dr. Mark Morgan (Google him), a gynecologist-oncologist and surgeon that specializes in complicated cancers like mine. He gave us his phone number and the procedure to get my CT/PET scans and pathology reports to Fox Chase, and suggested that I start that process right away. Meanwhile I have a standing appointment with my local gynecologic oncologist Friday and will get his opinion of my scan and his recommendations to factor in.

    My chemo-oncologist felt I could safely take a couple of weeks to get opinions and make a decision on any surgery before we talk about chemo options. He and I already talked about it as soon as my CA125 started rising, with Doxil the focus of the conversation. But today he threw out the idea of Carboplatin, which I took before in late 2008/early 2009 and was effective for me. He said he'd be interested in what chemo drug this Dr. Morgan from Fox Chase would recommend.

    In explaining why he is recommending against surgery, my chemo-oncologist did say that typically a cancer like mine that has metastasized to the lymph nodes is already traveling freely via my blood stream and probably already microscopically seeded elsewhere. So cutting out visible cancer won't be curative and could cause complications. But I just want to make sure I leave no stone unturned, so I want the 2nd opinion (which my chemo-onc seemed to be encouraging). Surprisingly Fox Chase is in my insurance primary coverage service area, so I'll be covered if I have surgery or any treatments there. I hate to make this harder getting another opinion, but that way everyone in my family saying "Get it cut out" can be at peace with the next treatment protocol. I'll keep you posted!
  • My OFFICIAL CT/PET results
    At my appointment today, my chemo-onc said that it looks like the taxol chemo I was getting has stopped working. My CA125 went up again, from 78 to 83 in the past week. I was hoping my August CT/PET scan would be clear, and would signal a chemo break for me, but that is not going to happen now.

    The official GOOD NEWS is that last Thursday's CT/PET showed that my cancer is still contained in the same couple of lymph nodes that it was on my last CT/PET scan 3 months ago, with no spread anywhere!! The bad news is that the lymph node under my arm is bigger (now over 2 cm) and lit up MUCH brighter on the PET scan, with an SUV of 17, which is significant (!!!) metabolic activity. And the para-aortic node that lit up last time, although still tiny (4 mm) is none-the-less larger and lit up again.

    The 3 oncologists on my local cancer team are still not recommending surgery, but my husband and I want to get an outside opinion before we totally let go of that idea. My chemo-oncologist suggested the Fox Chase Cancer Center in Philadelphia (about a 3 hour drive from here) and a Dr. Mark Morgan (Google him), a gynecologist-oncologist and surgeon that specializes in complicated cancers like mine. He gave us his phone number and the procedure to get my CT/PET scans and pathology reports to Fox Chase, and suggested that I start that process right away. Meanwhile I have a standing appointment with my local gynecologic oncologist Friday and will get his opinion of my scan and his recommendations to factor in.

    My chemo-oncologist felt I could safely take a couple of weeks to get opinions and make a decision on any surgery before we talk about chemo options. He and I already talked about it as soon as my CA125 started rising, with Doxil the focus of the conversation. But today he threw out the idea of Carboplatin, which I took before in late 2008/early 2009 and was effective for me. He said he'd be interested in what chemo drug this Dr. Morgan from Fox Chase would recommend.

    In explaining why he is recommending against surgery, my chemo-oncologist did say that typically a cancer like mine that has metastasized to the lymph nodes is already traveling freely via my blood stream and probably already microscopically seeded elsewhere. So cutting out visible cancer won't be curative and could cause complications. But I just want to make sure I leave no stone unturned, so I want the 2nd opinion (which my chemo-onc seemed to be encouraging). Surprisingly Fox Chase is in my insurance primary coverage service area, so I'll be covered if I have surgery or any treatments there. I hate to make this harder getting another opinion, but that way everyone in my family saying "Get it cut out" can be at peace with the next treatment protocol. I'll keep you posted!

    This comment has been removed by the Moderator
  • unknown said:

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    This comment has been removed by the Moderator
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    unknown said:

    This comment has been removed by the Moderator

    Connie: about the lymph nodes & surgical removal
    I was Google-ing different things and can't remember excatly where I read this. But I read an interesting article about removing cancerous lymph nodes that was about metastic breast cancer but still seems to directly relate to me (and others of us with mets to lymph nodes). The article was arguing AGAINST the removal of the cancerous lymph nodes in the armpit (where my largest one is). It explained that the cancer cells that get caught in the lymph node are 'sticky' cancer cells, and that these 'sticky' cancer cells are unlikely to move on OUT of the lymph node even though they may multiple in that node. But it went on to say that just because you have sticky cancer cells doesn't mean ALL of your cancer cells are sticky like that, quite the contrary. Meanwhile other less sticky cells get past the lymph system and have already probably moved on to other parts of your body in microscopic form, waiting to make mischief for you elsewhere. So the article said that removing the cancerous lymph node just gives you a false sense of having struck a significant blow against the cancer; you haven't really. And the surgery can cause its own side affects and lose time when you could have been getting systemic chemo attacking those microscopic cells.

    Seems a good argument for your IP chemo though!
  • Connie: about the lymph nodes & surgical removal
    I was Google-ing different things and can't remember excatly where I read this. But I read an interesting article about removing cancerous lymph nodes that was about metastic breast cancer but still seems to directly relate to me (and others of us with mets to lymph nodes). The article was arguing AGAINST the removal of the cancerous lymph nodes in the armpit (where my largest one is). It explained that the cancer cells that get caught in the lymph node are 'sticky' cancer cells, and that these 'sticky' cancer cells are unlikely to move on OUT of the lymph node even though they may multiple in that node. But it went on to say that just because you have sticky cancer cells doesn't mean ALL of your cancer cells are sticky like that, quite the contrary. Meanwhile other less sticky cells get past the lymph system and have already probably moved on to other parts of your body in microscopic form, waiting to make mischief for you elsewhere. So the article said that removing the cancerous lymph node just gives you a false sense of having struck a significant blow against the cancer; you haven't really. And the surgery can cause its own side affects and lose time when you could have been getting systemic chemo attacking those microscopic cells.

    Seems a good argument for your IP chemo though!

    This comment has been removed by the Moderator
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408

    My OFFICIAL CT/PET results
    At my appointment today, my chemo-onc said that it looks like the taxol chemo I was getting has stopped working. My CA125 went up again, from 78 to 83 in the past week. I was hoping my August CT/PET scan would be clear, and would signal a chemo break for me, but that is not going to happen now.

    The official GOOD NEWS is that last Thursday's CT/PET showed that my cancer is still contained in the same couple of lymph nodes that it was on my last CT/PET scan 3 months ago, with no spread anywhere!! The bad news is that the lymph node under my arm is bigger (now over 2 cm) and lit up MUCH brighter on the PET scan, with an SUV of 17, which is significant (!!!) metabolic activity. And the para-aortic node that lit up last time, although still tiny (4 mm) is none-the-less larger and lit up again.

    The 3 oncologists on my local cancer team are still not recommending surgery, but my husband and I want to get an outside opinion before we totally let go of that idea. My chemo-oncologist suggested the Fox Chase Cancer Center in Philadelphia (about a 3 hour drive from here) and a Dr. Mark Morgan (Google him), a gynecologist-oncologist and surgeon that specializes in complicated cancers like mine. He gave us his phone number and the procedure to get my CT/PET scans and pathology reports to Fox Chase, and suggested that I start that process right away. Meanwhile I have a standing appointment with my local gynecologic oncologist Friday and will get his opinion of my scan and his recommendations to factor in.

    My chemo-oncologist felt I could safely take a couple of weeks to get opinions and make a decision on any surgery before we talk about chemo options. He and I already talked about it as soon as my CA125 started rising, with Doxil the focus of the conversation. But today he threw out the idea of Carboplatin, which I took before in late 2008/early 2009 and was effective for me. He said he'd be interested in what chemo drug this Dr. Morgan from Fox Chase would recommend.

    In explaining why he is recommending against surgery, my chemo-oncologist did say that typically a cancer like mine that has metastasized to the lymph nodes is already traveling freely via my blood stream and probably already microscopically seeded elsewhere. So cutting out visible cancer won't be curative and could cause complications. But I just want to make sure I leave no stone unturned, so I want the 2nd opinion (which my chemo-onc seemed to be encouraging). Surprisingly Fox Chase is in my insurance primary coverage service area, so I'll be covered if I have surgery or any treatments there. I hate to make this harder getting another opinion, but that way everyone in my family saying "Get it cut out" can be at peace with the next treatment protocol. I'll keep you posted!

    Linda
    Sending hugs and prayers girlfriend....things need to get easier for you some time soon...

    Laurie
  • jazzy1
    jazzy1 Member Posts: 1,379

    Linda
    Sending hugs and prayers girlfriend....things need to get easier for you some time soon...

    Laurie

    Hang in there Ms.Linda~
    You've really got this path of action figured out... I wish you nothing but the best and know you're a trooper who will and can endure all....

    ((( hugs )))
    xoxoxox
    Jan
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Connie: about the lymph nodes & surgical removal
    I was Google-ing different things and can't remember excatly where I read this. But I read an interesting article about removing cancerous lymph nodes that was about metastic breast cancer but still seems to directly relate to me (and others of us with mets to lymph nodes). The article was arguing AGAINST the removal of the cancerous lymph nodes in the armpit (where my largest one is). It explained that the cancer cells that get caught in the lymph node are 'sticky' cancer cells, and that these 'sticky' cancer cells are unlikely to move on OUT of the lymph node even though they may multiple in that node. But it went on to say that just because you have sticky cancer cells doesn't mean ALL of your cancer cells are sticky like that, quite the contrary. Meanwhile other less sticky cells get past the lymph system and have already probably moved on to other parts of your body in microscopic form, waiting to make mischief for you elsewhere. So the article said that removing the cancerous lymph node just gives you a false sense of having struck a significant blow against the cancer; you haven't really. And the surgery can cause its own side affects and lose time when you could have been getting systemic chemo attacking those microscopic cells.

    Seems a good argument for your IP chemo though!

    on reading linda's posts: i hate cancer!!!!

    linda,

    i'm almost at a loss for words in response to all you've been going through (and certainly others here as well). i hate your cancer, i hate mine, and i hate all of ours. i know some sisters have said that cancer has brought them increased appreciation for life, and i'm happy for those for whom that's happened. i personally can't think of one benefit cancer has brought me, even though i've had wonderful doctors, nurses, hospitals, and found the best possible sisters here. i hate all the worry and anxiety about every new pain, all the treatments which can save/prolong our lives, but do their own damage to our precious bodies, all the tests and scans, not without their own dangers, not being able to plan more than 3 or 6 months in advance, having to make possibly life and death decisions with complicated, incomplete information, hearing about dear ones sick and or falling by the wayside. it never ends.....

    i, too, have a slightly enlarged para aortic node, which i am leaving strictly alone. i've heard something similar about not removing those nodes, though not exactly what you've reported, but close. i just want to add my voice to the chorus of others here who so appreciate you, linda, and are thinking of you and wishing only good results for you (and some good luck right about now). i'm with you when you say you don't want to leave any stone unturned; then you can hopefully have some peace knowing you've amassed as much information as there is to get before you make any decisions. whatever you decide to do, however, know that i, and i'm sure i speak for so many here, are 100% behind you. i know you'll keep us posted.

    hugs and sisterhood,
    maggie
  • GracieGold
    GracieGold Member Posts: 23
    jazzy1 said:

    Hang in there Ms.Linda~
    You've really got this path of action figured out... I wish you nothing but the best and know you're a trooper who will and can endure all....

    ((( hugs )))
    xoxoxox
    Jan

    Linda
    I am sending you love, light and prayers for healing. Your positive energy and the love you have freely given to all on this discussion board have been a wonderful influence for me as I have been going down this path.
  • thank you
    thank you Member Posts: 77

    Connie: about the lymph nodes & surgical removal
    I was Google-ing different things and can't remember excatly where I read this. But I read an interesting article about removing cancerous lymph nodes that was about metastic breast cancer but still seems to directly relate to me (and others of us with mets to lymph nodes). The article was arguing AGAINST the removal of the cancerous lymph nodes in the armpit (where my largest one is). It explained that the cancer cells that get caught in the lymph node are 'sticky' cancer cells, and that these 'sticky' cancer cells are unlikely to move on OUT of the lymph node even though they may multiple in that node. But it went on to say that just because you have sticky cancer cells doesn't mean ALL of your cancer cells are sticky like that, quite the contrary. Meanwhile other less sticky cells get past the lymph system and have already probably moved on to other parts of your body in microscopic form, waiting to make mischief for you elsewhere. So the article said that removing the cancerous lymph node just gives you a false sense of having struck a significant blow against the cancer; you haven't really. And the surgery can cause its own side affects and lose time when you could have been getting systemic chemo attacking those microscopic cells.

    Seems a good argument for your IP chemo though!

    Is directed radiation of
    Is directed radiation of those 2 nodes an option?
  • This comment has been removed by the Moderator
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    unknown said:

    This comment has been removed by the Moderator

    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.