Whine time for me :(

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Comments

  • snowbird_11
    snowbird_11 Member Posts: 160
    #22
    Sara Zipora said:

    So sorry to hear about the latest
    Dear Annie,
    I applaud your tenacity and have been there too, no symptoms but fighting for CT and then having them say ok now do pet/ct. Sadly our instincts are right.
    You are the master/mistress of your treatment and good for you that you are in charge of you!

    After second recurrence not three months shy of second surgery in 16 months to remove 8cm tumor and do colon resection, was put on Gemzar Carbo. My platelets and red and white didn't allow full dosage as well as sticking to regular protocol. I was very anxious that the bad buggers couldnt be killed on cntinued lowering dosage. Pestered for PET. Finally paid for PET (may get refund since it came out lighting up lymph nodes).
    Just began IMRT radiation 5 x per week with lowish dose of Sisplatin at the begining of each week. Has anyone been this route?

    We must keep fighting and the group support is so empowering!
    All the best,
    Sara

    Thank you Sara for your
    Thank you Sara for your comments. I am not sure how I missed your post a few weeks ago of your second recurrence! I am so sorry that it occurred so soon; that is very hard to deal with. Hopefully with all hot spots contained in pelvic area, the chemo and radiation combo will get it all taken care of.
    Healing thoughts and Hugs to you.
    Annie
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #23
    Annie
    Sending you hugs, thoughts and prayers on your newest journey....

    Please keep in touch!

    Laurie
  • snowbird_11
    snowbird_11 Member Posts: 160
    #24
    CindyGSD said:

    :o(
    I wouldn't be too put off by your doctor's reluctance to start chemo until you are symptomatic. It sounds like this happens quite a bit with Ovarian cancer re-occurrences and it does not mean that they don't expect it to work. On the contrary, they just don't want to treat the re-occurrence until it becomes necessary. There is an argument for it, that escapes me at the moment, but I'm sure your doctor can give you reasons.

    That said, I'm with you...let the treatment commence...immediately!

    If you don't mind me asking....why did you insist on a scan when you had no symptoms?

    Take care,
    Cindy

    @Cindy, The recurrence dilemma...
    What are the symptoms of a recurrence? I just don’t know and since I did not have symptoms of note when cancer first surfaced when it was Stage IVB, I have been hesitant to just wait for a recurrence to announce itself. Now, in retrospect, I had subtle symptoms that could have been due to various issues – dietary changes, just that plain old aging thing, medication changes – nothing that was significant enough to note, mostly just digestive issues. I have since researched liver met symptoms and, yes, they were there and now I am more aware of them. I think waiting for significant symptoms allows too much opportunity for advancement beyond reasonable treatment options – but that’s just my opinion. As for lung issues, I was having more problems earlier last year, hardly anything recently. Last spring i had resorted to only playing golf if I had a riding cart - that cut into golf outings considerably, since my husband is the best at finding low cost tee time deals and that's when we play ;-) On Friday, I walked a hilly 18-hole course pushing my cart with no difficulties whatsoever. I'm beginning to appreciate my doctor's constant caveat about my 'yeah!! no organ involvement' with his 'scans don't show everything.'

    No doctor wants to list all possible recurrence symptoms – recurrence where? – too many possibilities and then know I’d be imagining everything might be something. Probably why I hadn’t checked on what they might be. I did ask about brain met symptoms since he will only scan if some indication surfaces and he mentions “a wide-based gait’ - my first husband was a neurologist and my thought was that was not necessarily an early or main symptom, just one of many possibilities.

    As to waiting to treat, the second gyn-onc I consulted basically agreed and even indicated his next chemo consideration would be the same. I have appts. with both doctors this week.

    And all i wanted for Christmas this year was a crystal ball.
    Annie
  • kkstef
    kkstef Member Posts: 688 Member
    #25
    Thinking of you Annie!
    Annie, I was so shocked to read your post about your recurrence. You are such a trooper and have always been so encouraging to everyone on this board. I am just so sad to hear the latest development. Whine away....you certainly are justified.

    Sending you lots of positive thoughts....please keep us posted.

    Wishing good things for you!

    Karen
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #26
    Tresia23 said:

    Dear Annie
    'Be your own advocate - no one else cares as much as you do'. I have read your 'about me' page a few times and I have always loved those words that you wrote. It is inspiring and we need to keep repeating it to ourselves. We need to always be vigilant about what is said when we see our doctor. It is 'about us' and we are not just cases. That is the big divide between patient and doctor. No matter how much we may like them, there are always those days when they may be too busy, tired, maybe even grieving (doctors do this too) to respond to our unique situation. That is the very reason that I remind myself of what you wrote.
    I am waiting on CA125 and CT results too. My gyn onc saw results showing multiple lesions in my liver and nodules in my lungs and asked me to make an earlier appointment than my usual 3 monthly check. I have been symtomatic since November but have been having investigations for cardiac and lungs. Anxiously waiting for Monday to arrive. May you be peaceful and not have the worry take over
    Georgia

    Tresia23 -
    Georgia,

    Checking in to see if you got your results....Keeping you lifted in thoughts and prayers...

    Laurie
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #27
    snowbird_11 said:

    @Cindy, The recurrence dilemma...
    What are the symptoms of a recurrence? I just don’t know and since I did not have symptoms of note when cancer first surfaced when it was Stage IVB, I have been hesitant to just wait for a recurrence to announce itself. Now, in retrospect, I had subtle symptoms that could have been due to various issues – dietary changes, just that plain old aging thing, medication changes – nothing that was significant enough to note, mostly just digestive issues. I have since researched liver met symptoms and, yes, they were there and now I am more aware of them. I think waiting for significant symptoms allows too much opportunity for advancement beyond reasonable treatment options – but that’s just my opinion. As for lung issues, I was having more problems earlier last year, hardly anything recently. Last spring i had resorted to only playing golf if I had a riding cart - that cut into golf outings considerably, since my husband is the best at finding low cost tee time deals and that's when we play ;-) On Friday, I walked a hilly 18-hole course pushing my cart with no difficulties whatsoever. I'm beginning to appreciate my doctor's constant caveat about my 'yeah!! no organ involvement' with his 'scans don't show everything.'

    No doctor wants to list all possible recurrence symptoms – recurrence where? – too many possibilities and then know I’d be imagining everything might be something. Probably why I hadn’t checked on what they might be. I did ask about brain met symptoms since he will only scan if some indication surfaces and he mentions “a wide-based gait’ - my first husband was a neurologist and my thought was that was not necessarily an early or main symptom, just one of many possibilities.

    As to waiting to treat, the second gyn-onc I consulted basically agreed and even indicated his next chemo consideration would be the same. I have appts. with both doctors this week.

    And all i wanted for Christmas this year was a crystal ball.
    Annie

    Annie
    Sending you lots of positive energy this week as you go for your consults....

    Stay strong and keep us posted!

    Laurie
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #28
    snowbird_11 said:

    Hi JoAnn, I get my reports
    Hi JoAnn, I get my reports directly from the departments where the tests are done. I check at test time when the results should be available and just show up and ask for a copy of the results. I refuse to wait to have someone give their interpretation before I can review it myself and have the opportunity to formulate questions, do research, whatever seems necessary before I see the doctor.

    The CT scans show way more detail - size, location, etc. of any abnormality. The PET shows whether or not there is hypermetabolic activity associated with the abnormality. Cancer is a busy entity hence shows higher than normal levels of activity -- the "hot spots" on the scan. My gyn-onc started with CT scans but when an abnormality showed up he ordered follow-up PET scans. Now that I am in a state of chronic disease, it is always the combo. If you have normal Ct scans and no other issues of concern, the CT scans may well be all that is needed. I had previously heard that when one got a PET/CT the CT was a lower level, exposing to less radiation but that is only if one gets a "PET scan" which includes a light CT scan for providing PET image with structural outline. I get full diagnostic CTs when I get a "PET/CT".
    Keeping the 'worry level' down is always a challenge!
    Annie

    Annie - scans
    When I have scans done, I always have them performed at Hopkins, where I get the results just 3 hours later. So I do not have an opportunity to see the results because my doctor usually has them handed to her as she comes into the exam room then reads them with me.

    But to me, this is preferable to the way my other gyn onc handles it. I have the CT scan on Monday and see him on Wednesday for results and an exam. Two days of agonizing.

    Besides, I think Hopkins has the better equipment.

    A dear friend of mine is a brilliant radiologist so I have all my scans sent to her as well.

    joann
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #29
    kkstef said:

    Thinking of you Annie!
    Annie, I was so shocked to read your post about your recurrence. You are such a trooper and have always been so encouraging to everyone on this board. I am just so sad to hear the latest development. Whine away....you certainly are justified.

    Sending you lots of positive thoughts....please keep us posted.

    Wishing good things for you!

    Karen

    Annie - scans and reports
    When I have scans done, I always have them performed at Hopkins, where I get the results just 3 hours later. So I do not have an opportunity to see the results because my doctor usually has them handed to her as she comes into the exam room, then she reads them with me. If I have any questions later, I can e-mail them.

    But to me, this is preferable to the way my other gyn onc handles it. I have the CT scan on Monday and see him on Wednesday for results and an exam. Two days of agonizing.

    Besides, I think Hopkins has the better equipment.

    A dear friend of mine is a brilliant radiologist so I have all my scans sent to her as well.

    joann
  • Tresia23
    Tresia23 Member Posts: 77
    #30
    TiggersDoBounce said:

    Tresia23 -
    Georgia,

    Checking in to see if you got your results....Keeping you lifted in thoughts and prayers...

    Laurie

    Hi Laurie, Thanks for your cheery post. Saw my gyn/onc on Monday. CA125 was 9 which is good. She did not seem worried about cancer recurrence or lung nodules. However CT showed five more liver cysts. That makes ten. One seems to have grown since January (last radiologist said lesions). Radiologist now suggesting an ultrasound to confirm. My gyn/onc has given me a referral to a gastroenterologist for consultation. I have been researching liver cysts. I have found they can be symptomatic and surprise, surprise can cause breathlessness, early satiety, upper abdo pain, distension, nausea etc, etc. I kind of feel reassured now that I know I am not imagining all of this. Because docs have yet to confirm what is causing my discomfort I feel somehow that I have to keep proving that my symptoms exist. I am so thankful to be able to share on this board. I love you all, may you be peaceful and happy, Georgia
  • Tresia23
    Tresia23 Member Posts: 77
    #31
    Sara Zipora said:

    So sorry to hear about the latest
    Dear Annie,
    I applaud your tenacity and have been there too, no symptoms but fighting for CT and then having them say ok now do pet/ct. Sadly our instincts are right.
    You are the master/mistress of your treatment and good for you that you are in charge of you!

    After second recurrence not three months shy of second surgery in 16 months to remove 8cm tumor and do colon resection, was put on Gemzar Carbo. My platelets and red and white didn't allow full dosage as well as sticking to regular protocol. I was very anxious that the bad buggers couldnt be killed on cntinued lowering dosage. Pestered for PET. Finally paid for PET (may get refund since it came out lighting up lymph nodes).
    Just began IMRT radiation 5 x per week with lowish dose of Sisplatin at the begining of each week. Has anyone been this route?

    We must keep fighting and the group support is so empowering!
    All the best,
    Sara

    Hi Sara
    I want to join with the others in wishing you the best with your treatment for recurrence. Look after yourself while your are having radiation and Cisplatin. You are so right. Group support is empowering. Kind thoughts to you, Georgia

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