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another NED

RainbowRita
RainbowRita Member Posts: 51
edited September 25 in Uterine Cancer #1

Sorry I haven't been able to post  an update before now. It has just been a crazy busy week. However, I really wanted to share with my fellow "cancer warriors" the good news. I had my baseline CT scan on Monday, and the results were: "No evidence of metastatic disease." Hallelujah! I also had post-chemo labs done that day also.

I had a virtual visit with my gyn onc the following day. I had some concerns about having 9 flags on my blood work (7 lows, 2 highs - MCV and RDW). The most I’d ever had, in fact. However, she said that those abnormal levels were to be expected at the end of chemo and radiation therapy. She said that since chemo won’t be beating up my bone marrow every three weeks any longer, those levels will go back to normal. It will just take some time; about 3 months for red blood cells to regenerate I think she said.

She recommended that I keep my port in for at least a year and then evaluate at that time its removal. It doesn’t cause me any issues and I’m fine with leaving it in. She said port flushes can be coordinated with my “surveillance exams”. I’m to go in for those every 3 months. She said they used to do port flushes every 6 weeks but because of Covid increased that to 12 weeks with no problems. She also mentioned that the first two years are the highest risk for reoccurrence.  I’m to contact her nurse if I have any concerns, but pretty much “back to normal” going forward.

I told her I was having some “vision issues”. She said those are a rare side effect of Taxol. Any of you have problems with vision due to chemo? I had a little bit of it after my 4th chemo cycle, but it coincided with my low BP that I’d always get about that time so wrote it off to the low BP. Happened again at the 5th one and that lasted a little longer, but got better as time went on. It wasn’t until my final round and I realized it wasn’t going away that the blurry vision and “glowing, vibrating sky” effect might be due to the chemo itself and not the low BP. I also found I cannot drive at sunset or sunrise as anywhere the sun hits looks huge and really bright. Car headlights are very bright and huge to me now, so no night driving for awhile either. The onc doc said that might improve some over the next couple of months, but could be permanent. It has gotten a little bit better. At least the general blurriness has improved and my computer monitor no longer appears to be vibrating when I look at it. I have an appointment to get my eyes examined in early November. The earliest I could get in, by the way.

One other thing I wanted to mention. I asked her when I should get my 3rd Covid vaccination. She said my leukocytes were pretty low and those are what are needed to mount a proper immune response in regards to vaccinations, so I should wait 3-4 more weeks before getting that shot. Since I got my first two when I first started chemo, I don’t think I very good protection from them and I want this 3rd one to actually do some good. So I’m willing to live like a hermit for another 2 months if it means I won’t have to be so paranoid about catching Covid in the future.

I still plan on sticking around this board and maybe I can be one of the ones offering some “words of advice” some day. :-) And I’m sure I’ll still be asking questions also. I'm leaving on Monday for a visit with my son and his family. They now live almost 4 hours away, they used to live 10 miles from me. Not so easy to justs pick up leave with 4 dogs and an 87 year old mother who lives with me. So this will probably be my last visit to eastern Wisconsin until spring. I'll be gone a week. I'll be checking this board, though I probably won't be posting much while I am gone. I hate using my phone, would rather type at a real keyboard. Love you all! :-)

 

Edited to add:

I forgot to mention for those of you who don't know me, here is my official diangosis and surgery info:

Stage IIIB, Grade 1 endometrioid adenocarcinoma of the endometrium.

Treatment History:

-12/14/20: Diagnostic laparoscopy (look inside the pelvis/abdomen with a camera), pelvic washings, sentinel lymph node mapping & biopsies (identification & removal of the first lymph nodes to which the uterus drains), conversion to laparotomy (large incision), modified radical hysterectomy (removal of uterus, cervix, and some of the tissue surrounding the cervix) wtih upper vaginectomy (removal of the upper vagina), bilateral salpingo-oophorectomy (removal of the bilateral ovaries & fallopian tubes), omental biopsy (biopsy from the fat curtain hanging off the bowel).

 I had "sandwich therapy" which consisted fo 3 rounds of chemo followed by 25 external beam radiation treatments and then 3 internal "brachytherapy" treatments. One month later I started chemo again for 3 more cycles. My 5th cycle delayed three times due to low blood counts. I received a Neulasta shot and a reduced dosage of Taxol with the 5 and 6th cycles. Finsished my final chemo cycle on August 18th. 

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    edited September 25 #2
    Congrats on your wonderful

    Congrats on your wonderful news! May you dance with Mr. Ned forever!!!! 

    Wow, that is going to be some trip with 4 dogs and another person to care for.

    Remember, you need to also give yourself a lot of rest time. Give your body time to heal. It takes time to get back to "normal".

    Love and Hugs,

    Cindi

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    Wonderful news!  Enjoy your

    Wonderful news!  Enjoy your time with your family and I am sure newbies will appreciate your ear.

    Hugs!

  • Tamlen
    Tamlen Member Posts: 323 **
    edited September 25 #4
    Vision issues from chemo

    Congratulations on NED -- such wonderful news!

    I, too, had vision issues develop during chemo. My vision was better than 20/20 before chemo and by the middle of chemo I was wearing cheaters for reading. By the end of chemo I had trouble seeing at night, pretty blurry vision for closeup, and I started having a weird "rippling" in my vision -- like I was looking through one of those wavy glass old window panes. Both my onc and my eye doctor dismissed my guess that it was related to chemo, telling me that I was older than most who start to lose their vision and it was my turn. The rippling and night vision problems went away within two months of chemo ending, and while my vision didn't go back to 20/20, it's better thant it was during chemo and today I use 1.25 cheaters for reading, nothing for middle distance or distance. I hope your vision issues resolve, too, as chemo recedes into the past.

    Tamlen

  • MAbound
    MAbound Member Posts: 1,156 **
    edited September 26 #5
    Kopps!!!!!

    Congratulations on your CT results! If you are going to be in eastern Wisconsin, I sure hope you'll be close enough to celebrate with some Kopps frozen custard! I'm from the Milwaukeed area and can never go back for a vist without stopping there. If you've ever been, you'll understand what I'm talking about. Drive careful, now!

  • Harmanygroves
    Harmanygroves Member Posts: 294 **
    Lovely Rita!

    I am smiling with such a very happy attitude of joy. I'm so amazingly happy for you. 

  • RainbowRita
    RainbowRita Member Posts: 51
    Thanks :-)

     

    Thanks you guys, for the comments and the good wishes. It has been quite a year, but I made it through with far less physical trauma than I thought I would. So for those newly diagnosed I am a good example that not everything you read about as a possible side effect of treatment will come to pass. And those you do get can be manageable. Looking back, cancer treatment was far less painful and "scary" than I thought it would be. As far as the emotional trauma goes…the fear of the unknown was the hardest part. Getting through it was easier than thinking about what was to come. As I’ve mentioned before, I just wish I had found this discussion board earlier. The advice found on here is so helpful. But you don’t know, what you don’t know, right? ;-)

    A good friend of mine made a comment to me a few months ago about someone else she knew that was undergoing chemotherapy for breast cancer. She told me that this person looked "really sick" and that was how she expected me to look when I got my diagnosis. Although I didn't exactly sail through the process, I will agree with her that I never looked like the stereotypical "cancer patient" (aside from the bald head, of course) ;-) For that I am grateful, and that surprised me also. I realize that some chemos are much harder on a person than the taxol/carbo combo I received, but before my diagnosis I assumed they were all the same...awful! I found that cancer treatments were not as terrible as the movies and TV shows make them out to be. As many have said on this board, cancer treatments are "do-able". So when I hear people comment that they don't know why people don't just skip all those "horrible treatments" and live their life to the fullest with the "time they have left" I realize that most people don't have a freakin' clue as to what it is like to be diagnosed with cancer.

    When my friend commented that she wondered if cancer treatments were "worth it" for that woman, I told her I'd crawl over ground glass if it meant I'd have more days on this earth and to be able to see my grandson grow up (my only grandchild, btw) and also that the pain, discomfort from treatment is certainly worth "suffering" if we have a shot at more years to live. And as you all know, not every possible side effect will happen to you.

    I guess I never really understood it either until I was on the "other side", but I for one want to stick around as long as possible. And if that means that I had to endure the pain of abdominal surgery and six months of cancer treatment, an emphatic "yes" it was sure "worth it". I am already feeling pretty good. I'm not quite back 100% in regards to stamina and energy levels, but I no longer feel like crawling onto the couch every few hours. I haven't wanted to take a nap in days...so progress! So would I want to "suffer" cancer treatments again? Hell yes, and to anyone who thinks the pain isn't worth it, they just need to read a few more stories from the cancer survivors on this board to see that there is hope for many good years to live even after a cancer diagnosis. :-)

  • jan9wils
    jan9wils Member Posts: 172
    Great news indeed! Enjoy your

    Great news indeed! Enjoy your trip - maybe you'll see some autumn colors. 

    Jan

  • cmb
    cmb Member Posts: 749 **
    Congrats

    So happy to hear your treatments are done and that you're feeling good. Enjoy your visit with family, although traveling with your mom and wrangling four dogs is bound to be complicated. I'm in the Chicago area not far from the Wisconsin border and our weather here has been just beautiful the past few weeks (unlike so many other parts of the country).

  • woodstock99
    woodstock99 Member Posts: 114
    edited September 26 #10
    Great news!  Congrats! 

    Great news!  Congrats! 

  • MoeKay
    MoeKay Member Posts: 354 **
    Congratulations on your NED CT scan!

    Glad to hear that your CT scan results gave you the best possible news!  Enjoy your visit with your son and family, the dogs and your Mom.  I have one cat and I know how much trouble she can be when she puts her mind to it, but I'm sure your dogs have to be better behaved than she is!!

    BTW, my white blood cells were low for a number of years after completing radiation and I didn't have chemo.  I didn't have a hematologist oncologist, but neither my gyn-onc nor rad-onc had any major issue with my low numbers and I never had any symptoms.  My WBC's were in the 3.1 to 3.7 range, with normal being 3.8 to 4.0, depending on the lab. 

  • Lyn70
    Lyn70 Member Posts: 64

    Thanks :-)

     

    Thanks you guys, for the comments and the good wishes. It has been quite a year, but I made it through with far less physical trauma than I thought I would. So for those newly diagnosed I am a good example that not everything you read about as a possible side effect of treatment will come to pass. And those you do get can be manageable. Looking back, cancer treatment was far less painful and "scary" than I thought it would be. As far as the emotional trauma goes…the fear of the unknown was the hardest part. Getting through it was easier than thinking about what was to come. As I’ve mentioned before, I just wish I had found this discussion board earlier. The advice found on here is so helpful. But you don’t know, what you don’t know, right? ;-)

    A good friend of mine made a comment to me a few months ago about someone else she knew that was undergoing chemotherapy for breast cancer. She told me that this person looked "really sick" and that was how she expected me to look when I got my diagnosis. Although I didn't exactly sail through the process, I will agree with her that I never looked like the stereotypical "cancer patient" (aside from the bald head, of course) ;-) For that I am grateful, and that surprised me also. I realize that some chemos are much harder on a person than the taxol/carbo combo I received, but before my diagnosis I assumed they were all the same...awful! I found that cancer treatments were not as terrible as the movies and TV shows make them out to be. As many have said on this board, cancer treatments are "do-able". So when I hear people comment that they don't know why people don't just skip all those "horrible treatments" and live their life to the fullest with the "time they have left" I realize that most people don't have a freakin' clue as to what it is like to be diagnosed with cancer.

    When my friend commented that she wondered if cancer treatments were "worth it" for that woman, I told her I'd crawl over ground glass if it meant I'd have more days on this earth and to be able to see my grandson grow up (my only grandchild, btw) and also that the pain, discomfort from treatment is certainly worth "suffering" if we have a shot at more years to live. And as you all know, not every possible side effect will happen to you.

    I guess I never really understood it either until I was on the "other side", but I for one want to stick around as long as possible. And if that means that I had to endure the pain of abdominal surgery and six months of cancer treatment, an emphatic "yes" it was sure "worth it". I am already feeling pretty good. I'm not quite back 100% in regards to stamina and energy levels, but I no longer feel like crawling onto the couch every few hours. I haven't wanted to take a nap in days...so progress! So would I want to "suffer" cancer treatments again? Hell yes, and to anyone who thinks the pain isn't worth it, they just need to read a few more stories from the cancer survivors on this board to see that there is hope for many good years to live even after a cancer diagnosis. :-)

    Wonderful News

    RR, I am so happy for your CT NED.

    I agree with you about treatment not being as difficult as the FEAR of treatment. I'm grateful for the supportive and compassionate staff at chemo and radiation centers everywhere! I miss some of those 'besties' now that treatment is over! 

    Continue to gain strength and stamina to play with your grandson. 

    ((Hugs))

  • Dak82
    Dak82 Member Posts: 92
    edited September 27 #13
    Great to hear

    Wonderful news. We were diagnosed about the same time and it's wonderful to see someone move out of the constant cancer mode and into a hopeful future!

    Cheers,

    Dev

  • Forherself
    Forherself Member Posts: 597 **
    Congratulations Rita

    SO great to hear you are done with treatment and are NED.  Thanks for sharing your good news.  People can say the darndest things!  But like you say, I don't think we really understand until the diagnosis is given to us.   

  • dgrdalton
    dgrdalton Member Posts: 161
    Congratulations Rita on the

    Congratulations Rita on the good news! NED are always great "letters" to hear!