Waiting of the other shoe to drop?

13

Comments

  • Forherself
    Forherself Member Posts: 789 Member

    Good news!!!

    Finally got my PET results! It's not perfect, but pretty darn good!

    Those two "fluid collections" were fine! Indeed, report stated they were "seromas or lymphoceles." YAY! My doctor said at least three times he was "...happy with the report!" The only concern, which was recommended to be followed up, was about some inflammation in the left "iniligual (sp?) canal," and a small, non-enhancing, possible "necrotic lymph node." Doctor didn't speak to that lymph node at all, I only learned of it by reading the report after I got home. Regardless, doctor wants to do follow-up CT in 3 months to watch it. That inflammation had also been visible with just the CT, so keeping an eye on it won't require another PET.

    All in all, we are very happy and tremendously relieved! It appears that first-line treatment WAS successfu! I can live with the "watching," cuz isn't that what we all have to do anyway?!?

    Thank you to all of you who have supported me through this treatment process! I appreciate you very much!

    ❌⭕️, Alicia

    so glad to read your good news.

    And necrotic means dead tissue so maybe that is why your doctor didn't mention it.  I would think it was not something to worry about.   

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    All the love!

    Thank you again for the kind words and love you have shown me, Ladies!

    Forherself, when I read that "necrotic lymph node," I said to my husband, "Necrotic??? That means dead?!? I have a dead lymph node??? Well... then OK! Good!!" I googled it immediately and found that it actually can be OK (nothing) or bad! In some cancers it can mean metastasis. I decided not to worry about it..,1) My doctor didn't think it was worth mentioning at all, 2) It would make sense that since he removed all the lymph nodes he found for staging purposes and that could mean that some lymph nodes might have died off because their supply lines were derailed?, and 3) nothing was misshapen or "lit up!" Man....that "lit up" thing was what we desperately wanted to avoid!

    Oh....so, this is so stupid, but expected...I asked about having my port flushed. Can I get on a schedule where I get my port flushed AND have my 3-month checkup at the same visit? Oh, no, they siaid! If you do that, insurance won't pay for it! It has to be two separate appointments on different days! I said, "That sounds about right." Oh.., but you can pay cash for the port flush. It's $25. Seriously.....it's an 1 1/2 hour round trip down there (and putting your life on the line in crazy Houston traffic!) and over 2 hours if you include parking and the flush!. Good. Grief. I said, "I think I can afford the $25." The medical and insurance system is completely messed up! 

    Hope y'all have a great week!

    ❤️, Alicia

     

  • Fridays Child
    Fridays Child Member Posts: 264 Member
    Great news, Alicia!

    So happy to read your good news!  And while it's not a happy reason for the trip, it does sound like you've found the way to bring joy into it anyway.  Good for you!

    Interesting about the port flush.  I have one currently scheduled the same day as my next CT scan but one or the other will have to be changed because I have to premedicate and drink the contrast, and the port flush is scheduled right when I have to be taking pills and drinking contrast. 

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited April 2021 #45

    All the love!

    Thank you again for the kind words and love you have shown me, Ladies!

    Forherself, when I read that "necrotic lymph node," I said to my husband, "Necrotic??? That means dead?!? I have a dead lymph node??? Well... then OK! Good!!" I googled it immediately and found that it actually can be OK (nothing) or bad! In some cancers it can mean metastasis. I decided not to worry about it..,1) My doctor didn't think it was worth mentioning at all, 2) It would make sense that since he removed all the lymph nodes he found for staging purposes and that could mean that some lymph nodes might have died off because their supply lines were derailed?, and 3) nothing was misshapen or "lit up!" Man....that "lit up" thing was what we desperately wanted to avoid!

    Oh....so, this is so stupid, but expected...I asked about having my port flushed. Can I get on a schedule where I get my port flushed AND have my 3-month checkup at the same visit? Oh, no, they siaid! If you do that, insurance won't pay for it! It has to be two separate appointments on different days! I said, "That sounds about right." Oh.., but you can pay cash for the port flush. It's $25. Seriously.....it's an 1 1/2 hour round trip down there (and putting your life on the line in crazy Houston traffic!) and over 2 hours if you include parking and the flush!. Good. Grief. I said, "I think I can afford the $25." The medical and insurance system is completely messed up! 

    Hope y'all have a great week!

    ❤️, Alicia

     

    Call Insurance

    I never had to have a separate appointment to have my port flushed, but I probably had different insurance than you had. The only way to be sure is to call your insurance company about that to verify that your doctor is correct. He may be thinking of requirments of insurance different from yours and just does it that way as a blanket policy so that he doesn't screw anything up. $25 isn't a lot by itself, but it's on top of everything else. 

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited April 2021 #46

    All the love!

    Thank you again for the kind words and love you have shown me, Ladies!

    Forherself, when I read that "necrotic lymph node," I said to my husband, "Necrotic??? That means dead?!? I have a dead lymph node??? Well... then OK! Good!!" I googled it immediately and found that it actually can be OK (nothing) or bad! In some cancers it can mean metastasis. I decided not to worry about it..,1) My doctor didn't think it was worth mentioning at all, 2) It would make sense that since he removed all the lymph nodes he found for staging purposes and that could mean that some lymph nodes might have died off because their supply lines were derailed?, and 3) nothing was misshapen or "lit up!" Man....that "lit up" thing was what we desperately wanted to avoid!

    Oh....so, this is so stupid, but expected...I asked about having my port flushed. Can I get on a schedule where I get my port flushed AND have my 3-month checkup at the same visit? Oh, no, they siaid! If you do that, insurance won't pay for it! It has to be two separate appointments on different days! I said, "That sounds about right." Oh.., but you can pay cash for the port flush. It's $25. Seriously.....it's an 1 1/2 hour round trip down there (and putting your life on the line in crazy Houston traffic!) and over 2 hours if you include parking and the flush!. Good. Grief. I said, "I think I can afford the $25." The medical and insurance system is completely messed up! 

    Hope y'all have a great week!

    ❤️, Alicia

     

    Happy news

    So glad to hear your good news!

    The port flush thing just sounds weird to me. I had my own port and saw many others get their ports flushed as part of other routine visits. I agree with MAbound -- check with your insurance.

    Also: You're very smart to go through your scan results yourself. Every now and then, the onc misses something worth getting their attention. Last year I had a scan, met with my onc, she was happy with the results, we drove the hours home. Then I received the scan report and it mentioned "mildly avid FDG uptake" in an axillary lymph node (sort of under my arm). I'd had mets to my lungs when first diagnosed, so this seemed worth asking about. I used the patient portal to ask and the nurse came back immediately and said my onc wanted it ultrasounded. All came back negative and nothing more has shown up there, but I'm glad I read that report and drew her attention to it.

    Tamlen

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    edited April 2021 #47
    I’m going to call!

    Thank you again, Ladies, for your support & kind words!

    I am going to call my insurance! I have noticed more than once that comments are made regarding coverage for this or that and I am reminded that we all can have very different kinds of coverage and may or may not be covered for certain things. So, I will call and see!

    I'm still having a bit of a hard time emotionally and physically. I am still (a month since last infusion) having problems with fatigue. I had what I thought was a pretty good day Thursday, and then yesterday felt crummy all day...kind of weak and nauseous. it's weird...and hard to describe...but the skin of my legs feels feels kind of numb and a little painful. I think a form of neuropathy that's not effecting my feet because I iced them? And it's hard to distinguish physical causes of fatigue from emotional ones. I still feel pretty beaten up by the stress of a worrisome CT result, waiting for PET results, and then the decision about the PARP inhibitor hanging over my head. I so desperately want the old me back!! I guess I just have to be more patient.

    You all help me a lot! Thank you!

    ❤️, Alicia

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Alicia, you are right.... You

    Alicia, you are right.... You are going to have to be patient. Your body has been through a lot and it will take time to level out and find your new normal. Please rest when you need to and try to walk a little every day. When I finished my treatments, I could barely walk one lap around the yard. It took a long time to build my strength back. And, it took me about 18 months to really feel about as good as I did before cancer.  I promise you it does get better both emotionally and physically. Be kind to yourself and continue to come here for support!

    Love and Hugs,

    Cindi

  • Forherself
    Forherself Member Posts: 789 Member

    I’m going to call!

    Thank you again, Ladies, for your support & kind words!

    I am going to call my insurance! I have noticed more than once that comments are made regarding coverage for this or that and I am reminded that we all can have very different kinds of coverage and may or may not be covered for certain things. So, I will call and see!

    I'm still having a bit of a hard time emotionally and physically. I am still (a month since last infusion) having problems with fatigue. I had what I thought was a pretty good day Thursday, and then yesterday felt crummy all day...kind of weak and nauseous. it's weird...and hard to describe...but the skin of my legs feels feels kind of numb and a little painful. I think a form of neuropathy that's not effecting my feet because I iced them? And it's hard to distinguish physical causes of fatigue from emotional ones. I still feel pretty beaten up by the stress of a worrisome CT result, waiting for PET results, and then the decision about the PARP inhibitor hanging over my head. I so desperately want the old me back!! I guess I just have to be more patient.

    You all help me a lot! Thank you!

    ❤️, Alicia

    Up and down

    is normal too.   It is not a straight line of improvement.  With so many things, I think it is much more common to have good and bad days mixed up together.  Just baby yourself on the harder days. 

    Sue

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    edited April 2021 #50
    It brings tears

    to my eyes that y'all are so kind and sweet to me. Thank you so very much! And your comments help me so much! It's important to hear such things from those who have actually gone through it. It's certainly not the kind of thing you can read just anywhere on the internet! I have been trying to walk a little every day, but it's hard.....I'm scared to get too far from the house, so I stay close. We had a nice family lunch together today and it helped to lift my spirits tremendously! A beautiful spring day on a big, open patio and lots of laughter.
    ❤️❤️❤️Thank you again for the encouragement❤️❤️❤️It means everythin.

    Alicia

  • els19
    els19 Member Posts: 106 Member
    edited April 2021 #51
    Same

    Alicia, I totally understand what you're going through because it's the same for me. I am so fatigued and it's so frustrating! But I ve been thinking back to my first time going through treatment and it was the same. It takes time to build back strength but even though I know that, it's still not easy. I also bounce around from day to day. Some days I feel better and then the next it's back to being so tired it's hard to walk around my backyard. Emotionally this has also taken a toll and the uncertainty of the future. But I know from the past, time helps. A friend who had been through cancer told me last time to take it, not only day to day, but week to week and season to season. And right now I do know that I'm better today than a week ago, even if it's not by much. And I'm expecting to feel much better a month from now. Hang in there!

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    Better!

    Thank you, els! That is a good way to look at it! I am better today than a week ago!

    When I had my PARP meeting (i reported about that on my PARP thread), I discussed the fatigue thing. I was saying that after my open-heart surgery in 2014, as tough as the recovery was, I was really good after 3 months and at 6 months+ spent the winter downhill skiing. She looked at me somewhat incredulously and said, "What your body has recently gone through is  very tough. Your recovery won't necessarily be a steady, steep incline like that. There will be some days up and some days down a little." Her point was that I couldn't compare that other recovdry to this one, because what has happened is so much tougher on my body. The chemo was such an assault (my words, not hers!) on my body.

    I guess it sounds stupid...but I guess I thought they should be similar! I thought that heart surgery was pretty darn bad! 9 1/2 hours on the operating table (to replace my mitral valve via right thorocotomy, my choice since I didn't want center incision), 6 days in ICU in Afib, and two fainting incidents during first months post-surgery from too low blood pressure. Not to mention the pain. I'm just saying....it was NO fun! So....it helped to hear....that THIS....in not THAT! 

    We made a shopping run yesterday. We were out of everything. During the months of chemo I would only make it about halfway through, leave my husband in an isle and say....that's it for me! I have to go sit down! I would go to the front of the store and wait. Yesterday we filled the cart to the brim and I didn't desert him until we got to the checkout! YAY! That's progress!

    ?, Alicia

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    edited May 2021 #53
    I’m back!

    Good morning, Ladies!

    I decided to post here on this thread as in some ways this is kind of the end of the ...This is how it went....story of my treatment.

    I just got back from almost a month in NY and PA. The best news is that I felt really good physically and like my old self! You know even 2 weeks before the trip I still had so much fatigue I didn't know how I was going to be able to do it! I got dressed up in my hat and boots and did very well on that long traveling day! Even in the Baltimore airport, walking hundreds of yards from gate to gate, I did great! And people all day kept complimenting me on my outfit, saying, "You look so beautiful!" And, "I love your hat!" After almost 10 months of feeling and looking like you know what, it was wonderful to hear!! The whole trip people told me that and I've decided I should have been wearing hats for years!! Mostly I just smiled sweetly and thanked them, but occasionally I would say (after the thank you!), "I know you think I'm trying to be fashionable, but really I'm just trying not to scare people with my chemo damaged hair!!"

    Emotionally, I had a really hard time. It was a tough job & my phone never stopped ringing. Even the four days in PA didn't really help because my phone still rang. And not conversations I could or should avoid! I WAS able to smile a lot and walk along the Susquehanna many times! One call I took, I finally said to the guy, "If you're going to insist on having this conversation, I'm going to have to pull over cuz you're ruining my fun!!" But it's done now and I'm home! His townhouse went on the market this morning. At least in the future all business can be conducted via the phone and internet. I had four guys driving me nuts wanting to buy the house (...what they really wanted to do was "steal" it!) before it was listed and by the end my lawyer said, "You're one tough girl! Most people would have thrown in the towel and caved, taken the easy way out, but not you!"

    GSK, who makes Zejula, is delivering it tomorrow morning and I'm going to start taking it next week. I'm still very afraid of it, but I need to try. I'm glad I had the opportunity to mostly recover from the chemo before we begin what might be a new assault on my body. So, if there are side-effects we'll know it's the new drug. Fingers crossed.

    I hope you all are OK! I sill include you in my prayers every day!

    ❤️, Alicia    

  • EZLiving66
    EZLiving66 Member Posts: 1,477 Member
    edited May 2021 #54

    I’m back!

    Good morning, Ladies!

    I decided to post here on this thread as in some ways this is kind of the end of the ...This is how it went....story of my treatment.

    I just got back from almost a month in NY and PA. The best news is that I felt really good physically and like my old self! You know even 2 weeks before the trip I still had so much fatigue I didn't know how I was going to be able to do it! I got dressed up in my hat and boots and did very well on that long traveling day! Even in the Baltimore airport, walking hundreds of yards from gate to gate, I did great! And people all day kept complimenting me on my outfit, saying, "You look so beautiful!" And, "I love your hat!" After almost 10 months of feeling and looking like you know what, it was wonderful to hear!! The whole trip people told me that and I've decided I should have been wearing hats for years!! Mostly I just smiled sweetly and thanked them, but occasionally I would say (after the thank you!), "I know you think I'm trying to be fashionable, but really I'm just trying not to scare people with my chemo damaged hair!!"

    Emotionally, I had a really hard time. It was a tough job & my phone never stopped ringing. Even the four days in PA didn't really help because my phone still rang. And not conversations I could or should avoid! I WAS able to smile a lot and walk along the Susquehanna many times! One call I took, I finally said to the guy, "If you're going to insist on having this conversation, I'm going to have to pull over cuz you're ruining my fun!!" But it's done now and I'm home! His townhouse went on the market this morning. At least in the future all business can be conducted via the phone and internet. I had four guys driving me nuts wanting to buy the house (...what they really wanted to do was "steal" it!) before it was listed and by the end my lawyer said, "You're one tough girl! Most people would have thrown in the towel and caved, taken the easy way out, but not you!"

    GSK, who makes Zejula, is delivering it tomorrow morning and I'm going to start taking it next week. I'm still very afraid of it, but I need to try. I'm glad I had the opportunity to mostly recover from the chemo before we begin what might be a new assault on my body. So, if there are side-effects we'll know it's the new drug. Fingers crossed.

    I hope you all are OK! I sill include you in my prayers every day!

    ❤️, Alicia    

    So glad to hear from you!!

    Alicia, I'm so glad to hear from you. You have been through so much already. Please let us know how your new medication is working.

    Love,

    Eldri

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    Thank you, Eldri!

    I hate it that everyone here has been through so much!
    In NY it was especially apparent to me that I was approaching that struggle the same way that I had approached everything else that's happened in the last year...and I know has pretty much been my way of dealing with difficult periods throughout my life....just keep putting one foot in front of the other each day and move forward. The weight of my responsibilities was heavy and I had too many tasks, but I got them done! 
    Now, the next hurdle is the Zejula. On the one hand I don't know how in the world I can make myself swallow those dreaded pills, and on the other hand I think I have to change my thinking to perceive them as I tried to do at each chemo infusion...."Alright! Let's kill some cancer cells!!" I'll let y'all know how it works out! 
    ❌⭕️, Alicia

  • LisaPizza
    LisaPizza Member Posts: 356 Member
    edited May 2021 #56

    Thank you, Eldri!

    I hate it that everyone here has been through so much!
    In NY it was especially apparent to me that I was approaching that struggle the same way that I had approached everything else that's happened in the last year...and I know has pretty much been my way of dealing with difficult periods throughout my life....just keep putting one foot in front of the other each day and move forward. The weight of my responsibilities was heavy and I had too many tasks, but I got them done! 
    Now, the next hurdle is the Zejula. On the one hand I don't know how in the world I can make myself swallow those dreaded pills, and on the other hand I think I have to change my thinking to perceive them as I tried to do at each chemo infusion...."Alright! Let's kill some cancer cells!!" I'll let y'all know how it works out! 
    ❌⭕️, Alicia

    My sister used to call chemo

    My sister used to call chemo "victory infusions." I laughed, and she said, "Well, that's what they are, aren't they?" Sometimes you need someone who hears and accepts your low feelings and fears, and sometimes you need someone who refuses to give up optimism :)

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    Dear LisaPizza,

    You always say stuff that makes me smile!! ?

  • LisaPizza
    LisaPizza Member Posts: 356 Member
    edited May 2021 #58

    Dear LisaPizza,

    You always say stuff that makes me smile!! ?

    Aw, thanks!

    Aw, thanks!

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    FINALLY!

    I have been declared NED! You know I had to have that second post-treatment CT last week "to be 100% sure," and yesterday afternoon got the news! I'm officially "in remission!" Today we have awoken to a happy, new world!

    I put on makeup for yesterday's visit....which I rarely do for doctor visits cuz seems like they always have something to say that makes me cry, so why bother?...and I was wearing a fabulous hat....but it amazed me how all nurses and doctor were going on and on about how great I looked! Oh My Goodness, I was afraid we would never see the day I could leave that office completely happy! Yay!

    There was much discussion about how I'm doing on the PARP inhibito/Zejula/immunotherapy. My bloodwork is holding up beautifully! I've had a lot of nausea, little appetite, and had another violent vomiting episode just the night before appointment. Looks like immunotherapy is effecting my stomach lining a little like the chemo did. But I have a lot of anxiety issues and that's greatly contributing to daily nausea. They strongly encouraged me taking my Xanax during the day when I'm not feeling well. I said I would.

    I learned something new about anxiety recently. I never walk around thinking or saying I feel anxious. But I discovered during chemo that the best anti-nausea for me was the Xanax. Take a small dose and in 20 minutes I'm not nauseous anymore and have an appetite. So I finally Gogbled it..."nausea and Xanax." Well, it turns out there is this thing they call the Gut-Brain Axis. It's an autonomic bidirectional communication system between your gut and brain. Billions of neurons and neurotransmutters in constant communication and effecting each other - all without your thought or input and completely outside your control! So, gut issues - including nausea, stomach lining, and constipation - can be caused by anxiety and vice versa! So, it's neither my fault or just my imagination that one is effecting the other! That makes me feel better!

    And then the icing on the cake! When I was at doctor's office my CA125 number had not come in, A few hours after I got home it did! Holy Moly it was 17! Most of you know I hate that CA and it was determined that stupid thing is not considered a good indicator for me. During chemo it fluctuated in the 20's and 30's and never was in the teens! I'm not going to "bet the farm" on this newest number was it was fabulous to see it drop! It sure is going to make it easier to swallow those Zejula pills every night! 

    That's my news, Ladies! Thank you sooooo much for all your love and support throughout my diagnosis & treatment! It has meant the world to me!

    ❌⭕️❌⭕️, Alicia

  • thatblondegirl
    thatblondegirl Member Posts: 333 Member
    edited July 2021 #60
    Goggled*

    My iPad is so uncooperative when trying to post and spell things correctly!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited July 2021 #61

    FINALLY!

    I have been declared NED! You know I had to have that second post-treatment CT last week "to be 100% sure," and yesterday afternoon got the news! I'm officially "in remission!" Today we have awoken to a happy, new world!

    I put on makeup for yesterday's visit....which I rarely do for doctor visits cuz seems like they always have something to say that makes me cry, so why bother?...and I was wearing a fabulous hat....but it amazed me how all nurses and doctor were going on and on about how great I looked! Oh My Goodness, I was afraid we would never see the day I could leave that office completely happy! Yay!

    There was much discussion about how I'm doing on the PARP inhibito/Zejula/immunotherapy. My bloodwork is holding up beautifully! I've had a lot of nausea, little appetite, and had another violent vomiting episode just the night before appointment. Looks like immunotherapy is effecting my stomach lining a little like the chemo did. But I have a lot of anxiety issues and that's greatly contributing to daily nausea. They strongly encouraged me taking my Xanax during the day when I'm not feeling well. I said I would.

    I learned something new about anxiety recently. I never walk around thinking or saying I feel anxious. But I discovered during chemo that the best anti-nausea for me was the Xanax. Take a small dose and in 20 minutes I'm not nauseous anymore and have an appetite. So I finally Gogbled it..."nausea and Xanax." Well, it turns out there is this thing they call the Gut-Brain Axis. It's an autonomic bidirectional communication system between your gut and brain. Billions of neurons and neurotransmutters in constant communication and effecting each other - all without your thought or input and completely outside your control! So, gut issues - including nausea, stomach lining, and constipation - can be caused by anxiety and vice versa! So, it's neither my fault or just my imagination that one is effecting the other! That makes me feel better!

    And then the icing on the cake! When I was at doctor's office my CA125 number had not come in, A few hours after I got home it did! Holy Moly it was 17! Most of you know I hate that CA and it was determined that stupid thing is not considered a good indicator for me. During chemo it fluctuated in the 20's and 30's and never was in the teens! I'm not going to "bet the farm" on this newest number was it was fabulous to see it drop! It sure is going to make it easier to swallow those Zejula pills every night! 

    That's my news, Ladies! Thank you sooooo much for all your love and support throughout my diagnosis & treatment! It has meant the world to me!

    ❌⭕️❌⭕️, Alicia

    Congrats Alicia! May you

    Congrats Alicia! May you continue to dance with Mr. Ned forever!!!!!! So happy for you and thanks for sharing your wonderful news with us.

    Love and Hugs,

    Cindi