Waiting of the other shoe to drop?

24

Comments

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    edited January 2021 #22
    Another update...a day before Round 4

    Hi, Ladies!

    Thanks for the information and your wig experience, Molly! Dak82, thanks for the laugh about looking like Daddy! I really appreciate y'all sharing.

    I really do hope I can avoid a wig, but I try to be prepared each time I comb my hair that it will all fall out. But....Now....this is an amazing new development! My "Wishcaps Guy" had told me weeks ago that since cold capping keeps the follicles from being damaged that I might have new hair coming in soon. I did NOT believe him! And then three days ago I felt some razor stubble near my hairline in the front! I indeed have new hair coming in! It's not everywhere yet, but I can feel other little spots here and there. It couldn't have come at a better time either....what with facing tomorrow as another frozen head day!

    And I want to throw this out there.....Even after I got through the horrible migraine and that vomiting, I was still having nausea issues and then sometimes I would think I was fine and very suddenly think, "OMG, I'm going to vomit again!" And I started noticing that food (what tiny amounts I might be lucky enough to consume!), eaten 4-6 hours earlier, were still in my stomach. I did some research and found that just like other fast-dividing cells in our bodies, the lining of the stomach has fast-dividing cells. So....it was greatly slowing down my stomach's ability to send food out in a timely fashion. With all that I've really only had 2 decent days during the past 21.

    Just my luck, right? There's a list of 15 "common" side-effects for the drugs most of us are receiving. There's a second list of 15 "less common" ones. Ironically, I've avoided most of those, but have a pretty serious problem with one that's not even on those lists! So far I think the only solution is more/stronger anti-nausea meds. I'll discuss again with chemo nurse tomorrow. Have any of you experienced these kinds of stomach problems? What helped you?

    Believe it or not, I'm still optimistic that Round 4 won't be too bad! I learn something each time that helps me avoid ugly consequences! I'm hoping I just don't need to learn any more new things....at least for a little while!

    Happy Monday to All! 
    Alicia

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    Update!

    Good morning!

    Round 4 turned out to be just about as rough as Round 3. Nott quite as bad, but not great! I still had the stomach lining issues, but could control a little better.

    Round 5 was pretty easy to take! Thank goodness! And now I've finished Round 6! Seems like it's true what they say about the problems with fatigue being cumulative, but I can handle that rather than the gastric stuff. Feeling a lot better after that one! Now, just have to wait for CT on Thursday, and hope for good results on the 30th! Gosh, I hope that's the end of it!

    I'm still waiting for genetic testing results and then will have to make a decision about whether or not to take "maintenance " drug (Zejula) to prevent reoccurrence. I know there can be pretty serious side-effects, but feel like I should probably try it and see. I just want this to be "over," and try to get to back to my pre-cancer life. We've had our first dose of the Moderna and will have second dose first week of April. Between cancer treatment & the pandemic, it's been a pretty long, miserable, winter, but hopefully we can resume some bit of normalcy around here by the end of April! I'm so sick of feeling sick, looking horrible, bad hair, and dressing in sweats! We're approaching the finish line and I keep telling myself to be patient just a little while longer!

    I hope all of you are doing OK. i pray every day for all of you here, the country, and the world to get well and get our regular lives back. 

    Hugs to all, A

  • EZLiving66
    EZLiving66 Member Posts: 1,477 Member
    edited March 2021 #24

    Update!

    Good morning!

    Round 4 turned out to be just about as rough as Round 3. Nott quite as bad, but not great! I still had the stomach lining issues, but could control a little better.

    Round 5 was pretty easy to take! Thank goodness! And now I've finished Round 6! Seems like it's true what they say about the problems with fatigue being cumulative, but I can handle that rather than the gastric stuff. Feeling a lot better after that one! Now, just have to wait for CT on Thursday, and hope for good results on the 30th! Gosh, I hope that's the end of it!

    I'm still waiting for genetic testing results and then will have to make a decision about whether or not to take "maintenance " drug (Zejula) to prevent reoccurrence. I know there can be pretty serious side-effects, but feel like I should probably try it and see. I just want this to be "over," and try to get to back to my pre-cancer life. We've had our first dose of the Moderna and will have second dose first week of April. Between cancer treatment & the pandemic, it's been a pretty long, miserable, winter, but hopefully we can resume some bit of normalcy around here by the end of April! I'm so sick of feeling sick, looking horrible, bad hair, and dressing in sweats! We're approaching the finish line and I keep telling myself to be patient just a little while longer!

    I hope all of you are doing OK. i pray every day for all of you here, the country, and the world to get well and get our regular lives back. 

    Hugs to all, A

    I wondered how you were doing

    I wondered how you were doing, Alicia. I sure hope you get good news on that CT scan. It's always a balance on side effects vs treatment plans. I only had three chemos because the side effects were making my life unliveable. In hindsight, I'm glad I did but everyone has to make that decision for themselves.

    My husband and I were both able to get our vaccines when our county brought it to our 55+ community. I too am hoping this pandemic will be over soon. Florida doesn't have a mask mandate - it's on a county-by-county basis so it hasn't been too bad here this winter.

    Love,

    Eldri

  • cmb
    cmb Member Posts: 974 Member
    edited March 2021 #25
    Thanks for the update

    Alicia, I'm glad to hear that you're done with chemo and that you're halfway through the vaccination process. I'm hoping you get good news after your scan. Let us know about the scan and genetic tests results once you hear.

    I got my second shot on Friday but am still taking precautions since my siblings and other friends are still waiting for their shots. Plus wearing the mask has had some benefits for me – I haven't bothered with makeup more than a few times this past year and I never had any of the usual colds or my seasonal allergies. But it will be nice to eat in a restaurant again instead of takeout.

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    Thank you,

    For your kind replies! The support is very much appreciated! I will let you know about my results! I was full of "scanicety" for a few days, but thankfully reverted to my normal "It is what it is" and there's nothing I can do about it attitude pretty quickly!

    We were so lucky with the timing of our first shot because being a current chemo patient I could only get it 2 weeks post-infusion, so our window of opportunity was very small! And I need to fly the end of April to tend to my duties as Executrix of my uncle's estate & I couldn't get on that plane without being fully vaccinated!! (It's a 3 day drive, so driving it was NOT going to happen!)

    Funny what you said about the makeup, cmb!! I've only put on any makeup maybe 3 times in the last 6 months and I thought to myself,"Do I even remember how to do this??" ;)) And "What's the point with this mask on?" My eyebrows are pretty much gone now.....haven't lost my eyelashes yet, but fear a mascara wand would drag them right out! I complained about my "bad hair" in previous post, but it's mostly because it's so thin and my regular blond highlights aren't much anymore. I'm trying to wait as long as possible to do anything about it!  I'm very thankful I have what I do & glad I did the cold-capping routine, but it WAS pretty torturous by the last infusion. My hair was so thin by then that it was colder and made me very nauseous. 

    i really appreciate all of you ladies. Thank you, again. I keep asking God to heal all of us. I wish no one ever had to fight any cancer. 

    Love, Alicia 

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    It’s always something.....

    I wish I had great news, but we're still waiting. I had my CT and 5 days later finally got to see doctor for results. There were two "fluid collections" in my lower right pelvis, which radiologist clearly stated were most likely "seromas or cysts." So now doctor saying I need PET scan to be sure they're not cancerous. What??? I was horrified, heartbroken, and confused! First of all, all my original problems were on/in the left pelvis. Secondly, they were tiny tumors, not fluid collections! How could fluid sacs be tumors?? He said he needed to be 100% sure that there weren't cancer cells forming ascites. WHAT??? I've never had ascites, and any accumulation of ascites I've ever read about are free fluids and in the upper abdomen! Not contained in sacs!

    I cried incessantly for two days. Seriously, he's got me scared to death that this means I've had a recurrence during first-line treatment. Face more chemo? OMG. We all know second-line treatmeants mean you're on the downhill slope. So...I had my PET yesterday morning. I complained to the technician that I was going to have to wait until Tuesday for results...which is ridiculous seeing that those will be in his office by this morning. I begged he and then his office staff not to make me wait over Easter weekend....Nope, you have to wait. 
    Well...they sent me home with a CD. I've "read" it myself, and it appears that those spots are indeed just seromas. Nothing in the pelvis is "lit up," No nodules or tumors, or anything "lit up!" Thank goodness. We are withholding any celebration until we actually get a report from him, but I have been able to stop crying so much. I'm just so tired and feel like my mind and body have been beaten up. 

    I'm really tired of being my own darn doctor. If he had any heart he would call me today to ease my mind. I know it's Good Friday, but his office is open. Of course if he calls me he can't charge my insurance that $500 he gets for office visits. Like this cancer business isn't tough enough? Why do they seem to delight in making it harder?

    I wanted to alert others about the seroma or cyst possibity. My second surgery was long & arduous, so seromas could easily occur. Mine are small and not causing me issues at all. Eventually my body should reabsorb them.

    I'll let y'all know when/if  I finally get my "All Clear!"

    I hope you all can enjoy a nice Easter!

    Hugs, Alicia

     

  • cmb
    cmb Member Posts: 974 Member
    edited April 2021 #28

    It’s always something.....

    I wish I had great news, but we're still waiting. I had my CT and 5 days later finally got to see doctor for results. There were two "fluid collections" in my lower right pelvis, which radiologist clearly stated were most likely "seromas or cysts." So now doctor saying I need PET scan to be sure they're not cancerous. What??? I was horrified, heartbroken, and confused! First of all, all my original problems were on/in the left pelvis. Secondly, they were tiny tumors, not fluid collections! How could fluid sacs be tumors?? He said he needed to be 100% sure that there weren't cancer cells forming ascites. WHAT??? I've never had ascites, and any accumulation of ascites I've ever read about are free fluids and in the upper abdomen! Not contained in sacs!

    I cried incessantly for two days. Seriously, he's got me scared to death that this means I've had a recurrence during first-line treatment. Face more chemo? OMG. We all know second-line treatmeants mean you're on the downhill slope. So...I had my PET yesterday morning. I complained to the technician that I was going to have to wait until Tuesday for results...which is ridiculous seeing that those will be in his office by this morning. I begged he and then his office staff not to make me wait over Easter weekend....Nope, you have to wait. 
    Well...they sent me home with a CD. I've "read" it myself, and it appears that those spots are indeed just seromas. Nothing in the pelvis is "lit up," No nodules or tumors, or anything "lit up!" Thank goodness. We are withholding any celebration until we actually get a report from him, but I have been able to stop crying so much. I'm just so tired and feel like my mind and body have been beaten up. 

    I'm really tired of being my own darn doctor. If he had any heart he would call me today to ease my mind. I know it's Good Friday, but his office is open. Of course if he calls me he can't charge my insurance that $500 he gets for office visits. Like this cancer business isn't tough enough? Why do they seem to delight in making it harder?

    I wanted to alert others about the seroma or cyst possibity. My second surgery was long & arduous, so seromas could easily occur. Mine are small and not causing me issues at all. Eventually my body should reabsorb them.

    I'll let y'all know when/if  I finally get my "All Clear!"

    I hope you all can enjoy a nice Easter!

    Hugs, Alicia

     

    Seromas

    Alicia,

    I looked back at my CT-scans. It took about 1.5 years after surgery for the small lymphocele or seroma I had to disappear. The ascites I had after surgery also disappeared in that time frame. So be patient if the seromas take a while to reabsorb into the body.

    But your comment about getting the CD is very important. I've always asked for copies of the disk at the time I've had any procedure – mammogram, CT-scan, MRI, DVT scan, etc. I then make sure I get copies of the written reports later. I don't usually look at the disks myself, although I always read the reports. But should I ever need to get treatment at another hospital, having copies of the disks and reports would be a great help to the new doctor.

    And you can't count on your health system to make the written reports available long-term. My health system changed to a new medical records system a couple of years ago. While some data remained – like the blood work I've had in recent years – all of my older imaging test reports were no longer available online. So I was glad that I had my own copies.

    Alicia, I know that it's stressful to wait until you talk with the doctor, but the initial indications from the PET scan look good. Try to have a relaxing Easter.

     

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    Thank you, cmb!

    You're always so kind with your replies!

    I'm glad to know your report about how long it took your seroma to reabsorb. Most of what I've read said sooner, so I won't be alarmed if it's longer! 

    I'm supposed to give that CD to my ONC, but I wa thinking it would be smart to get a copy for myself. Funny....when they said CD I said, "Really, like a disc?" Like it seemed so antiquated to me!! Technology moves so fast! Remember when we all had stacks of "floppy discs?" ? Seems like a million years ago!

    Thanis again for your support!

    Happy Easter to all! ? Alicia

  • Dak82
    Dak82 Member Posts: 109 Member
    edited April 2021 #30
    Hang in there!

    Alicia you and I were on roughly the same calendar schedule for chemo--taxol/carboplatinx6. I also had 3 sessions of brachytherapy between rounds 2 and 3. My doctors have made it clear that I must also undergo 25 sessions of radiation after I recover from chemo. My last chemo round was 30 March. I was stage 3C2 and surgery got the visible cancer. So now I'm waiting for the radiation schedule. I have no scans or other tests scheduled. I feel quite lucky that I got through this much of the treatment with no dramatic side effects so far. Some CIPN in my fingers and toes, persistent anemia and some bone pain from the Neulasta. No nausea, extreme fatigue or other negative side effects. I have been able to walk daily and even mix in some light jogging. The most noticeable chemo side effect for me has been the breathlessness after relatively little exertion. I have learned how to manage that over the last 3 months but every once in a while I overdo it. Today I rode my bike outside for 32 miles and spent the rest of the day feeling pretty wasted. I have managed to keep up a 40 hour work week as well--thank heavens for telework! i got my first Pfizer shot a week ago.

    I mention all this because I feel very blessed and lucky for both my residual health and the wonderful doctors and nurses here at Huntsman. We all have different paths we follow on our journeys. My CA125 is in the teens so I accept that the treatment has been successful so far. Everything we are doing now is to prevent recurrence. I am also blessed, that like you Alicia, I have a non-aggressive uterine cancer.

    I have not had another shoe drop and I pray it stays that way. All of you on this forum have stories of strength and persistence and I thank you for them.

    Deb

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    edited April 2021 #31
    Amazing!

    Thanks, Deb! I'm trying! I'm never good with the waiting!

    I don't know how you do it! Seriously, bike 32 miles! I thought about my bike the other day and made myself laugh at the idea of wobbling down the street for 50 ft. and falling over in a heap! My fatigue has been so awful that most days I have felt like my legs were just two sticks holding me up! I'm so proud and happy for you that you have faired so well!

    I guess I have been a little more concerned than I might be about this recent "we're going to need a PET," because my CA125 has never gone below 22. He says "it's not a good marker for you," but it's still not what I hoped for!

    I hope everything goes well for you with the radiation. You're a trooper!

    I'll let y'all know what I hear late Tuesday. My appointment is for 5:00pm.....(.Never heard of an appointment so late!)

    Hugs, Alicia

  • zsazsa1
    zsazsa1 Member Posts: 549 Member
    Dak82 said:

    Hang in there!

    Alicia you and I were on roughly the same calendar schedule for chemo--taxol/carboplatinx6. I also had 3 sessions of brachytherapy between rounds 2 and 3. My doctors have made it clear that I must also undergo 25 sessions of radiation after I recover from chemo. My last chemo round was 30 March. I was stage 3C2 and surgery got the visible cancer. So now I'm waiting for the radiation schedule. I have no scans or other tests scheduled. I feel quite lucky that I got through this much of the treatment with no dramatic side effects so far. Some CIPN in my fingers and toes, persistent anemia and some bone pain from the Neulasta. No nausea, extreme fatigue or other negative side effects. I have been able to walk daily and even mix in some light jogging. The most noticeable chemo side effect for me has been the breathlessness after relatively little exertion. I have learned how to manage that over the last 3 months but every once in a while I overdo it. Today I rode my bike outside for 32 miles and spent the rest of the day feeling pretty wasted. I have managed to keep up a 40 hour work week as well--thank heavens for telework! i got my first Pfizer shot a week ago.

    I mention all this because I feel very blessed and lucky for both my residual health and the wonderful doctors and nurses here at Huntsman. We all have different paths we follow on our journeys. My CA125 is in the teens so I accept that the treatment has been successful so far. Everything we are doing now is to prevent recurrence. I am also blessed, that like you Alicia, I have a non-aggressive uterine cancer.

    I have not had another shoe drop and I pray it stays that way. All of you on this forum have stories of strength and persistence and I thank you for them.

    Deb

    Deb, make sure you go on a

    Deb, make sure you go on a probiotic a week before beginning the external beam radiation.  I didn't find out about this until after I developed HORRIBLE intractable acute radiation enteritis.  Others on here then told me about probiotic, and it helped greatly.  Someone said that they had begun the probioltic a week before they began external beam radiation, and had NO diarrhea!

  • zsazsa1
    zsazsa1 Member Posts: 549 Member

    Amazing!

    Thanks, Deb! I'm trying! I'm never good with the waiting!

    I don't know how you do it! Seriously, bike 32 miles! I thought about my bike the other day and made myself laugh at the idea of wobbling down the street for 50 ft. and falling over in a heap! My fatigue has been so awful that most days I have felt like my legs were just two sticks holding me up! I'm so proud and happy for you that you have faired so well!

    I guess I have been a little more concerned than I might be about this recent "we're going to need a PET," because my CA125 has never gone below 22. He says "it's not a good marker for you," but it's still not what I hoped for!

    I hope everything goes well for you with the radiation. You're a trooper!

    I'll let y'all know what I hear late Tuesday. My appointment is for 5:00pm.....(.Never heard of an appointment so late!)

    Hugs, Alicia

    Alicia, it took a long time

    Alicia, it took a long time for my Ca-125 (36 at diagnosis, soared to 72 after surgery) to come down.  Finally, I think maybe a year after surgery, it seemed to settle in the low teens.  There was a slow creep in there up to the high mid teens, and I freaked, but then it came back down to the low teens, and has stayed there.  

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    edited April 2021 #34
    Thank you, zsazsa1!

    I really appreciate you sharing that information about your CA! Mine was 20 at diagnosis, and went to 66 after my second surgery. I know inflammation and other things can cause it to be elevated, but it's still disconcerting, right? Especially since there are only a few things to indicate a possible recurrence....none of which is too scientific or definitive, it would be nice if the CA was dependable! How are you feeling? And a pelvic exam can't possibly detect a whole lot in my case! When I had cancer in two different places in my pelvis I was feeling fine! And what got me to the GYN office was very minor spotting that 1) was coming from a benign polyp, and 2) contained within an organ I no longer possess!

    It's going to seem like an eternity waiting for that 5:00pm appointment today for my PET results :((

    I always am so appreciative of y'all's support & concern!

    ❌⭕️, Alicia

     

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    edited April 2021 #35
    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

  • els19
    els19 Member Posts: 106 Member
    edited April 2021 #36
    Happy for you

    Alicia, congratulations on the great report! I'm sure you're very relieved. Thanks for sharing the good news.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited April 2021 #37
    Congrats Alicia! So happy to

    Congrats Alicia! So happy to see your great news this morning!

    Love and Hugs,

    Cindi

  • cmb
    cmb Member Posts: 974 Member
    Good news indeed!

    Alicia,

    Happy to hear that the doctor confirmed what you had thought was the case. While I know your trip later this month won't be for a happy occasion, after a year of shutdown, the ability to travel freely again is one that most of us are looking forward to.

  • thatblondegirl
    thatblondegirl Member Posts: 332 Member
    edited April 2021 #39
    Thank you for the congrats!

    You are all so sweet to share our happiness! Your support means so much to me. You have helped me through a very tough time!

    I have an appointment to see about taking a PARP...I know y'all see I started a new thread about it. I learned that my fabulous chemo nurse will be by my side as I see how that goes. I haven't completely signed on yet, so we'll see what she says.

    My doctor said, "Now go have fun in New York!" I laughed! You're right, cmb, it's not a fun trip, but stuff I have to do. I will take five days though, while the estate sale prep and event is in progress, to make a trip to PA. My mother and uncle grew up in this beautiful little town on the Susquehanna River. As I grew up, I spent a month there every summer and I have very fond memories of it. So I will spend five days smiling, taking walks along the river, shopping, eating, and napping! Heaven! About the best "change of scenery " I can imagine!

    Thank you again for being with me, friends!

    Love and hugs, Alicia 

     

  • oldbeauty
    oldbeauty Member Posts: 324 Member

    Thank you for the congrats!

    You are all so sweet to share our happiness! Your support means so much to me. You have helped me through a very tough time!

    I have an appointment to see about taking a PARP...I know y'all see I started a new thread about it. I learned that my fabulous chemo nurse will be by my side as I see how that goes. I haven't completely signed on yet, so we'll see what she says.

    My doctor said, "Now go have fun in New York!" I laughed! You're right, cmb, it's not a fun trip, but stuff I have to do. I will take five days though, while the estate sale prep and event is in progress, to make a trip to PA. My mother and uncle grew up in this beautiful little town on the Susquehanna River. As I grew up, I spent a month there every summer and I have very fond memories of it. So I will spend five days smiling, taking walks along the river, shopping, eating, and napping! Heaven! About the best "change of scenery " I can imagine!

    Thank you again for being with me, friends!

    Love and hugs, Alicia 

     

    .Good news, indeed!

    Alicia, it sounds like your plan is the perfect way to celebrate.  Enjoy our lovely spring weather.  Best wishes, Oldbeauty

  • ConnieSW
    ConnieSW Member Posts: 1,626 Member
    edited April 2021 #41
    I had my

    fingers crossed for you yesterday evening.  So glad to hear the good news.