Let's have a roll call!

Molly110

cmb said:

Molly

We can all relate to your relief with being done with treatment. I hope you'll be able to celebrate this milestone with something fun.

Oddly I didn't have neuropathy while taking Paclitaxel/Carboplatin, but it developed right at the end of treatment with Ifosfamide/Doxorubicin – not a typical side effect for those drugs.

My oncology nurse (who had also had cancer) said that it can take up to a year for neuropathy to subside. That wasn't the case for me since I still have it, but it hasn't gotten any worse and it's pretty mild compared to what others have suffered. I hope that you'll be one of the ones lucky enough to have it lessen over time, even if it doesn't completely go away.

I also took advantage of the yoga and exercise programs offered by my hospital while on Paclitaxel/Carboplatin (but not during the tougher Ifosfamide/Doxorubicin phase). While I'm definitely not an exercise junkie, I do believe that staying somewhat active helped me to recover more easily from all my treatments.

I hope that you'll be feeling more like yourself soon, but be patient with your body because it does take time.

Thank you, CMB. I'm awake now

Thank you, CMB. I'm awake now because the neuropathy in my feet is pretty painful, or it could be the Cy,balta, which I've only started to wean off of. Did you try it? I know that the American Society of Clincial Oncology has been recommending it for treatment of chemo-induced peripheral neuropathy since 2014, but I didn't notice any results, and I hated the side effect of waking up every hour or so all night. My pharmacist said it's more common for the drug to make people sleepy, but one thing that's surprised me throughout has been the number of unusual side effects I've had -- unusual as in the side effects are well known but not as many people get them. It sounds like you've been getting great care at Advocate. I've been at Lake Forest and have been stunned by and grateful for the quality of care I've received. 

 

I think my neuropathy will lessen over time and will cope fine if it doesn't go away. I'm just glad that it's over and I'm still standing. It sounds like you know the feeling.

Molly110

zsazsa1 said:

Congratulations on being done

Congratulations on being done with chemo.  I bet you will be feeling much, much better in another couple of weeks.  And hopefully it will all be smooth sailing from then on.

Thank you, Zsazsa. It must be

Thank you, Zsazsa. It must be tough to he a physician and have this kind of cancer. When my gyno/onco called to tell me after a D&C that I did have cancer, which my original gyno thought wasn't likely for a number of good reasons, he said that I had a "less common" form of endometrial cancer than wasn't often curable but was always treatable. He was kind and upbeat, but when I hung up the phone and looked up the disease, the first thing that came up was a journal article in which the first words I saw were "rare and malignant." So, despite a lifetime of analyzing public health research, I closed my computer and walked away from researching this disease. As a physician, you likely didn't get to run away from knowing more than you may have wanted to initially. I've always wanted to know everything, but not this time. I told my brilliant, compassionate gyno/onco that I didn't want to know my survival odds and was going to rely on him to kow what I should do. Of course, I did have to make decisions throughout my treatment, but by the time the decisions got complicated, I'd had some time to deal with the diagnosis. I hope your spleen situation resolves itself in the best possible way and especiall that you do not have to give up your dog.

Molly

Molly110

TeddyandBears_Mom said:

Hi, Cindi Here!

1. Type of uterine cancer - UPSC   Stage 1A  & Grade 3 

 

2. Treatment - I had the standard carbo/taxol. I started out having weekly treatments but switched to the  every 3 week protocol after the first 6 weeks. Even though the weekly had slightly less pain, I had way less good days. It was worth the higher every 3 week dose to get extra good days in between. I also had 5 brachy therapy sessions.

 

3. Current status - Just had my 4 year post treatment check up last week. Still NED!

 

4. Anything else you'd like to share or what you've learned from this journey, etc. - I have always been a glass half full kinda girl. I think having a positive attitude was incredibly important during treatment and post treatment recovery. It takes a long time to get back to a normal level of feeling "normal".  I continue to wake up happy every day and know that being healthy is a gift. I'm grateful for this group of women and truly miss those we have lost along the way. We all a so very lucky to have each other. 

Love and Hugs,

Cindi

 

 

Wow, four years sounds great!

Wow, four years sounds great! Congratulations, Cindi.

Molly110

Tamlen said:

Stage IVB and NED for now

Hi there, Tamlen here.

1. Type: Endometrioid adenocarcinoma, Grade 1, Stage IVB with mets (now cystic) only in the lungs, dx age 55. No family history. All pelvic lymph nodes were clear, but LVSI suspected at time of hysterectomy.

2. Treatment: February 2018: Total abdominal hysterectomy and lymphadenectomy via laproscopy. April 2018: Lung biopsy following CT scan I demanded, positive for multiple uterine tumors in both lungs. May-September 2018: 6 cycles of chemo with carboplatin and paclitaxel. June 2018: 5 rounds of brachytherapy. October 2018-present: Aromatase inhibitor (extemestane).

3. Current status: NED as of November 2019. Lung mets cystic (dead). Do not anticipate this will last but happy to have some extra time. Health generally good except for cancer!

4. Other comments: I found it freeing to make my peace with my sooner-than-anticipated demise, then let it go and just enjoy my life. Significant joint pain (almost debilitating some days, walk around like a 90-year-old on those days) from the aromatase inhibitor, but will keep taking it as long as it's working because pain beats the alternative. No neuropathy, thankfully; iced hands and feet religiously during chemo. Approved for medical marijuana but haven't found it much help for the pain.

Tamlen, I've been working on

Tamlen, I've been working on coming to terms with the fact that my life could end decades early than I expected based on the lomgevity of women in my family. Do you mind if I ask you how long it took you to come to the peaceful place you describe? 

 

I wish you -- and all of us -- the best of luck. 

Molly110

zsazsa1 said:

Congratulations on being done

Congratulations on being done with chemo.  I bet you will be feeling much, much better in another couple of weeks.  And hopefully it will all be smooth sailing from then on.

Thank you, Zsazsa. It must be

Thank you, Zsazsa. It must be tough to he a physician and have this kind of cancer. When my gyno/onco called to tell me after a D&C that I did have cancer, which my original gyno thought wasn't likely for a number of good reasons, he said that I had a "less common" form of endometrial cancer than wasn't often curable but was always treatable. He was kind and upbeat, but when I hung up the phone and looked up the disease, the first thing that came up was a journal article in which the first words I saw were "rare and malignant." So, despite a lifetime of analyzing public health research, I closed my computer and walked away from researching this disease. As a physician, you likely didn't get to run away from knowing more than you may have wanted to initially. I've always wanted to know everything, but not this time. I told my brilliant, compassionate gyno/onco that I didn't want to know my survival odds and was going to rely on him to kow what I should do. Of course, I did have to make decisions throughout my treatment, but by the time the decisions got complicated, I'd had some time to deal with the diagnosis. I hope your spleen situation resolves itself in the best possible way and especiall that you do not have to give up your dog.

Molly

Tamlen

Molly110 said:

Tamlen, I've been working on

Tamlen, I've been working on coming to terms with the fact that my life could end decades early than I expected based on the lomgevity of women in my family. Do you mind if I ask you how long it took you to come to the peaceful place you describe? 

 

I wish you -- and all of us -- the best of luck. 

I was really angry for the

I was really angry for the first six months, exacerbated by my original onc mis-diagnosing me as Stage II (I was actually Stage IVB) and the many months' delay in treatment it caused. I didn't think I was very angry, but looking back now, I can see I was. I wasn't angry that I had cancer and a shortened life; I was angry at how much of my life and the things I loved doing that this awful diseases was stripping me of -- and therefore, I thought, stripping me of part of my identity. My sweet husband never mentioned my months of anger until after the fact Decadron during chemo probably didn't help!

When chemo ended, which was about 10 months after original diagnosis, and it initially looked like it hadn't had any impact, I realized that I needed to adjust to my new horizon ASAP or, as the author of the article said, it would make the remaining time miserable. That's when the real work of making my peace kicked in.

I'm blessed to have been raised by loving parents who taught us that life doesn't really owe us anything. Friends kept saying to me, "Oh, it's so unfair! You've been so active and led such a clean-living life, and now you get cancer anyway!" I realized that when people spoke to me like this, it made me angrier, because it implied that by living a good life I somehow deserved for cancer not to try to kill me. But, of course, it doesn't work that way. I started pushing back -- really hard, sometimes, though always with love -- on that kind of thinking. And in doing so I found my freedom from it.

We should start a list of all the things we wish people wouldn't say to us, so we can print it out and hand it to our loved ones

 

Molly110

Tamlen said:

I was really angry for the

I was really angry for the first six months, exacerbated by my original onc mis-diagnosing me as Stage II (I was actually Stage IVB) and the many months' delay in treatment it caused. I didn't think I was very angry, but looking back now, I can see I was. I wasn't angry that I had cancer and a shortened life; I was angry at how much of my life and the things I loved doing that this awful diseases was stripping me of -- and therefore, I thought, stripping me of part of my identity. My sweet husband never mentioned my months of anger until after the fact Decadron during chemo probably didn't help!

When chemo ended, which was about 10 months after original diagnosis, and it initially looked like it hadn't had any impact, I realized that I needed to adjust to my new horizon ASAP or, as the author of the article said, it would make the remaining time miserable. That's when the real work of making my peace kicked in.

I'm blessed to have been raised by loving parents who taught us that life doesn't really owe us anything. Friends kept saying to me, "Oh, it's so unfair! You've been so active and led such a clean-living life, and now you get cancer anyway!" I realized that when people spoke to me like this, it made me angrier, because it implied that by living a good life I somehow deserved for cancer not to try to kill me. But, of course, it doesn't work that way. I started pushing back -- really hard, sometimes, though always with love -- on that kind of thinking. And in doing so I found my freedom from it.

We should start a list of all the things we wish people wouldn't say to us, so we can print it out and hand it to our loved ones

 

Thanks for the response,

Thanks for the response, Tamlen. I was fortunate enough not to have any problems with my diagnosis or care, and I ignored spotting for years, so the only person I've had any reason to be angry with is myself, and I guess I've been too frightened for most of the past 6 months to beat myself up much. I know what you mean about the awkward or -- if I'm feeling mean about it, stupid -- things people say to people in cancer treatment. My least favorite is hearing what an "inspiration" I am. I'm a late middle aged, white woman with good health insurance and easy access to stellar cancer care minutes from my work and home. I got diagnosed and I went through a relatively easy treatment with lots of support from colleagues, family, and friends, and I only decided on chemo and radiation because my doctor told me I was curable. In other words, I did the minimum with the maximum support, and I've only done it once. That is not "inspiring." Lots of the women who post here, though, *are* inspiring. No matter how often this *&&^# disease knocks them down, they keep getting up. They don't give up, and they reach out to support other women. My second least favorite thing is people telling me about someone they know who died of cancer after enduring horrible, painful treatment, adding after they tell the story "of course, that's not what will happen with you."  I know, though, that most people want to express sympathy or support but don't know how. What feels most comfortable to me is when people say something along the lines of "well, that sucks," and, of course, I appreciate being told that someone is praying for me, even though I'm an agnostic (although a Catholic one : )  .

CheeseQueen57

Things I wish People Wouldn’t Say!

"You Look Great!". Looks can be deceiving. I always, even in my worst moments made the extra effort to try to look good. Not really for others but for myself. 

"Don't worry, you'll be fine.". That's not necessarily true. 

"You're so strong". I have no choice. 

"You'll beat this"  Not necssarily  You can't will this away  

 

 

 

 

 

cmb

Molly110 said:

Thank you, CMB. I'm awake now

Thank you, CMB. I'm awake now because the neuropathy in my feet is pretty painful, or it could be the Cy,balta, which I've only started to wean off of. Did you try it? I know that the American Society of Clincial Oncology has been recommending it for treatment of chemo-induced peripheral neuropathy since 2014, but I didn't notice any results, and I hated the side effect of waking up every hour or so all night. My pharmacist said it's more common for the drug to make people sleepy, but one thing that's surprised me throughout has been the number of unusual side effects I've had -- unusual as in the side effects are well known but not as many people get them. It sounds like you've been getting great care at Advocate. I've been at Lake Forest and have been stunned by and grateful for the quality of care I've received. 

 

I think my neuropathy will lessen over time and will cope fine if it doesn't go away. I'm just glad that it's over and I'm still standing. It sounds like you know the feeling.

Neuropathy

Molly,

My doctor offered to write me a prescription for Gabapentin, but my neuropathy isn't actually painful so I didn't try it. I have just a weird numbness/tingling feeling in my toes and the balls of my feet. It doesn't really impact me on a daily basis. But I can't perch on my toes to do planks in exercise class anymore, which is a shame since I used to like to do them! 

And yes, we're lucky to have had good care and ongoing support at hospitals so close to where we work and live. 

BluebirdOne

Checking in

BluebirdOne: Hi all. We retired to live part time in our summer home in Michigan and Leawood, KS.

1. I was diagnosed in July 2018 at age 67 with UPSC. Staged at 1a. LVSI

2. Hysterectomy, BSO. I had my surgery and treatment at my 2nd opinion, Mayo in Rochester, with 4 rounds of chemo, 3 brachy. Look at my profile for the full story. 

3. Currently NED, next appt. 2/3. 

4. Don't blame yourself for your cancer. Advocate for yourself as some doctors do not take your symptons seriously. Your family goes through this with you, we all have suffered, but have pulled together. Educate yourself about your condition and treatment as fear of the unknown is mitigated with knowledge. Don't hesitate to get help with the after effects, as these could be lifelong. 

Denise

Molly110

cmb said:

Neuropathy

Molly,

My doctor offered to write me a prescription for Gabapentin, but my neuropathy isn't actually painful so I didn't try it. I have just a weird numbness/tingling feeling in my toes and the balls of my feet. It doesn't really impact me on a daily basis. But I can't perch on my toes to do planks in exercise class anymore, which is a shame since I used to like to do them! 

And yes, we're lucky to have had good care and ongoing support at hospitals so close to where we work and live. 

Neuropathy

CMB, 

Was it always not painful, or did it become not painful over time? It sounds like it was the former?

At first mine was exactly what yours is -- "weird" and "creepy" were my words for it, rather than painful. After my fourth cycle, my hands and feet (mostly my feet) started to burn, and now (two weeks after my final cycle) the "pain" alternates between burning and freezing. (I told my wonderful gyn/onc that I'd thought since it was "just" nerve pain, I could reframe it in my head as something other than pain, maybe just discomfort. I soon learned better, and he told me that it's usually harder to reframe nerve pain than "regular" -- not his word -- pain.) My hope is that continuing with twice weekly acupuncture will get rid of as much of it as possible. I hadn't thought yet about not being able to stand on my toes, as I'm still working on standing up in the bathtub. I had no idea before the neuropathy how much that depends on ones toes. : ) 

Molly

oldbeauty

Molly110 said:

Neuropathy

CMB, 

Was it always not painful, or did it become not painful over time? It sounds like it was the former?

At first mine was exactly what yours is -- "weird" and "creepy" were my words for it, rather than painful. After my fourth cycle, my hands and feet (mostly my feet) started to burn, and now (two weeks after my final cycle) the "pain" alternates between burning and freezing. (I told my wonderful gyn/onc that I'd thought since it was "just" nerve pain, I could reframe it in my head as something other than pain, maybe just discomfort. I soon learned better, and he told me that it's usually harder to reframe nerve pain than "regular" -- not his word -- pain.) My hope is that continuing with twice weekly acupuncture will get rid of as much of it as possible. I hadn't thought yet about not being able to stand on my toes, as I'm still working on standing up in the bathtub. I had no idea before the neuropathy how much that depends on ones toes. : ) 

Molly

Neuropathy

Hello Molly, my neuropathy is permanent 2+ years after chemo (12 rounds of carboplatin and/or taxol/taxotere).  By the end of chemo I could barely walk around the house it was so painful.  My endocrinologist prescribed Lyrica, which she was more readily bio-available than Neurontin, and I take 75 mg 3x per day.  Lyrica has now gone off patent so there's not the fight anymore to get insurance to approve it, and it's cheaper this year. In addition, I was referred to a wonderful Ph.D. in physical therapy who specialized in traumatic brain injury, and she really helped me build core strength and train my brain to again do balance-intensive tasks.  In addition, I started one-on-one Ayengar-style yoga.  Whether one thing, two things, three things or No things helped beyond time away from chemo I don't know.  I was so debilitated by my chemo odyssey that it took a solid year of Ketogenic diet and these self-help routines to get back to where I am today.  

I used not to be able to bend over without tipping over, or kneel on the floor w/o my head feeling like it would explode, or walk w/o looking like Frankenstein's monster. Last summer, I was able to (with help from hubby) to landscape our front yard, walk at least 3 miles at a time, and I've never fallen.  I'm a little clumsy at yoga sometimes (mostly getting upright again from poses) but my stamina and strength and balance has vastly improved.  Below my ankles my feet are pretty numb (though I can feel temperature changes) and I do have a constant tingle.  I feel like I can't move my toes but I look down and I can move them.  I've never been kept awake at night with pain as some here have reported.  I don't feel any untoward effects from the Lyrica so I follow my doctor's advice to keep on taking it (I've played with the idea of weaning myself off but the doctor says I am on such a "baby" dose so I continue).  But, like I say, my improvement to my current level of mild disability may just be due to time away from chemo.  Good luck with your quest for relief.  Best wishes, Oldbeauty

smargaret

roll call

Hi, I'm Sue and here is my info:

1.  Type and stage of uterine cancer:  I was diagnosed last October with high-grade serous carcinoma.  Surgery was Nov. 22 ( total abdominal hysterectomy and bilateral salpingo-oophorectomy ) and the path report showed stage 1-A.  I'm 77 years old.

2.  There was no further treatment recommended, since the tumor was less than 1 cm. and was in a polyp rather than in the uterine wall and there was no evidence of cancer anywhere else.

3.  I go back every three months to Kaiser for check-ups for the next two years.  I am told that the chance of recurrence is small, given the size and type of tumor.  I am fortunate in that a friend who is a retired ob/gyn has gone with me to every visit to make sure I understand what the docs are saying and to ask questions I don't know enough to ask.

4.  This site had been invaluable for me in terms of advice.  Thanks to all of you!

cmb

Molly110 said:

Neuropathy

CMB, 

Was it always not painful, or did it become not painful over time? It sounds like it was the former?

At first mine was exactly what yours is -- "weird" and "creepy" were my words for it, rather than painful. After my fourth cycle, my hands and feet (mostly my feet) started to burn, and now (two weeks after my final cycle) the "pain" alternates between burning and freezing. (I told my wonderful gyn/onc that I'd thought since it was "just" nerve pain, I could reframe it in my head as something other than pain, maybe just discomfort. I soon learned better, and he told me that it's usually harder to reframe nerve pain than "regular" -- not his word -- pain.) My hope is that continuing with twice weekly acupuncture will get rid of as much of it as possible. I hadn't thought yet about not being able to stand on my toes, as I'm still working on standing up in the bathtub. I had no idea before the neuropathy how much that depends on ones toes. : ) 

Molly

No Pain

Molly,

My neuropathy has never been painful - just the same numbness/tingling sensation. I think because mine developed at the very end of my chemo treatments it never progressed to a more severe state. While it's never gotten better, it also has never gotten worse. 

I hope you feel some improvement soon.

cheerful

EZLiving66 said:

Hi, I'm Eldri, 67 and living

Hi, I'm Eldri, 67 and living in Tarpon Spring, Florida.

1. I have UPSC with incomplete staging - either Stage II or III (no lymph nodes taken), Grade 3.

2. I completed three of six chemos with Carboplatin and Taxotere at St. Vincent's Hospital in Green Bay, Wisconsin.

3. NED - 4+ years as of 9-30-2019. I take 2000 mg of Metformin daily.

4. I wish I would have found this board before going through chemo. There is SO much information on here from this wonderful group. I have severe neuropathy and numbness in my feet but my doctor said I have a good pulse in both ankles so that's good, but I wish I had known about icing! I've learned to live with the side effects of the chemo and since retiring and moving to Florida, I have a great lifestyle. I will (knock on wood) be five years NED this year and I'm still trying to figure out why I'm alive and so many wonderful women who had lower stages and grades than me, are gone. 

Love,

Eldri

Hi: I'm Jane, age 68 and live outside of Philadelphia, PA in the suburbs

I have UPSC - Stage 1A - Grade 3

I completed 6 rounds of carboplatin and taxol from April of 2011 through August of 2011 and then I had 3 brachytherapy treatments end of September 2011 into October 2011.

I am currently with NO evidence of disease after almost 9 years as I was diagnosed in February of 2011 with UPSC.  I was 59 when I was initially diagnosed with UPSC.

I am very grateful to the wonderful group of women on this board - as they are all so knowledgeable on UPSC and other types of uterine cancer as well.  I have known of several women very sadly to have passed away from UPSC through the years and do miss all of the women that have passed away on this Board.  I am very grateful to still be alive and doing well after almost 9 years of diagnosis.  I still see my oncologist 2x a year as he does schedule ultrasounds of the abdomen and the pelvis once a year and also do have blood work done.  I did have a slight reoccurrence in the fall of 2016 and miraculously UPSC just left me after several months of being followed very closely by my oncologist so no further chemo tratments were needed in 2016 - thankfully and gratefully.

Hugs,

Cheerful a/k/a Jane

NoTimeForCancer

CheeseQueen57 said:

Things I wish People Wouldn’t Say!

"You Look Great!". Looks can be deceiving. I always, even in my worst moments made the extra effort to try to look good. Not really for others but for myself. 

"Don't worry, you'll be fine.". That's not necessarily true. 

"You're so strong". I have no choice. 

"You'll beat this"  Not necssarily  You can't will this away  

 

 

 

 

 

Where is that darn LIKE

Where is that darn LIKE button!!! 

cmb

Good news

Sue,

It's good to hear that your cancer was caught early and contained within a polyp. That's just about the best news anyone can receive with this cancer. You're also fortunate to have a ob/gyn friend who has been with you throughout this process. I'm sure that helped a great deal, along with the input from this board. 

Even though the chance of recurrence is small, having regular exams is still the soundest strategy. Your doctor is wise to recommend this.

jan9wils

roll call

Hi! I am Jan

Type and stage: endometriod adenocarcinoma stage 1B grade 2 dx June 2014

Treatment: hysterectomy, radiation, chemotherapy, surgical resections, immunotherapy, hormone (blocker) therapy

Currently: recovering from abdominal surgery to remove tumors

Other: because my cancer is "garden variety" the multiple recurrences were surprising for me. I'm no longer in denial about the seriousness of this disease.

mamlicsw

Stage and grade of Cancer:

Stage and grade of Cancer: Stage 1a, grade 3 undifferentiated cancer.  Diagnosed April, 2019 at age 69.  I live in Dedham, MA, which is a suburb of Boston.

Treatment:  DaVinci robotic hysterectomy on April 30th.  I had 6 chemo treatments with Carboplatin only as I already had very mild neuropathy and balance issues, which my Onc didn't want to make worse.  Had to delay some of the treatments due to neutropenia.  Just had my last of six brachytherapy treatments today.  My last CT was after my 3rd chemo and I was NED at that point.  Will follow up with regular exams and blood work.  It's unfortunately left me feeling like a physical wreck compared to how active I was previously.  I hope to try to get back to the gym for at least a short period of time later this week.  I'm having trouble accepting my ongoing anemia and overall weakness and lack of stamina.  

Current Status:  I believe I'm probably NED still but very concerned about recurrence.  It was reassuring to learn that so many of you are also grade 3 and still here after a few years.

Other Comments:  I don't contribute very much but I check in pretty regularly.  This site has been so helpful in terms of making me feel less isolated.  I don't know anyone else with uterine cancer so there's been no one in my orbit to speak with informally about the experience.  Thanks to everyone who does contribute. You probably don't realize how many other people you are helping.  Mary Ann

JillAndrea

Fridays Child said:

Friday's Child

1. Endometrioid adenocarcinoma, originally Grade 1, Stage 1a.  Six years later, recurrence to pelvis, hip joint, and both lungs, restaged at IVB.

2. DaVinci robotic hysterectomy followed by brachytherapy after original diagnosis.  After recurrence, 5 low dose carboplatin and taxol concurrent with radiation, then 6 full dose carboplatin and taxol. After that, letrozole for about 9 months, then changed to megestrol.

3.  Still not NED.  Latest scan shows stable disease.  Still hopeful.  It has now been eight years since the initial diagnosis and two years since the recurrence was diagnosed.

4.  Interestingly, I had occasion to meet one of the scientists who was involved in the discovery that platinum affected cancer cells, leading to the development of cisplatin.  The first man treated with it (for prostate cancer)  has been disease free since 1974.

I am very interested in your

I am very interested in your journey, as I have the same stage/grade as your original diagnosis.  What kind of surveillance did you have before your recurrance?  They tell me I will only be surveilled  for 5 years.  When did you learn about your recurrance, and how was it identified?  I do wish you well in your treatment and hopeful recovery.

Jill