Waiting of the other shoe to drop?

alicia2020 said:

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, 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

alicia2020 said:

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

 

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.

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

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 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!

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

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.

alicia2020 said:

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 

 

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