Let's have a roll call!

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.

Currently 58 yrs old.  UPSC/clear cell, Stage 1a or 3c1, depending upon how you interpret isolated tumor cells in sentinel node.  I only had sentinel nodes taken.  I had a year of clear discharge, but was told it was nothing to worry about unless I had blood - which took about a year to finally appear.  Diagnosed Sept 2018.

Robotic hysterectomy October 2018.  6 rounds carboplatin/taxol, chemo drawn out due to low platelets.  That was probably due to the fact that I have an enlarged spleen of indeterminate origin, which was likely chewing up my platelets.  Pushed for testing for her2/neu status, was positive, added herceptin to treatment.  Finished chemo (but declined last dose taxol due to beginnings of neuropathy - I had iced assiduously during treatment, which I think helped), continued herceptin.  Then did 6 weeks whole pelvic IMRT radiation - was a tough decision whether to do brachy or external pelvic.  Had a very hard time with radiation-induced enteritis, but that has finally largely resolved.

NED CT scans March 2019.  NED MRIs November 2019.  Ca125 slightly increased last time, hopefully was because I'd just had a liver biopsy procedure done to work up enlarged spleen.  About to make a decision with oncologist on taking out the enlarged spleen.  

The support and advice I've received from this board has been invaluable.  It's been very hard to see some of the women who helped me, pass away from uterine cancer recently.  I don't come on as often now, because it makes me sad to know they're gone, but I do check in at times, and am very willing to offer any advice from my experience, that any woman might find useful.

takingcontrol58 said:

Zsazsa1- a suggestion

Zsazsa1,
Before you decide to remove your spleen, which is a key part of the immune system, which you need working
at full capacity when you have cancer, I would highly recommend you test your blood for ferritin (stored iron).

It is a key fuel for cancer- rising ferritin levels are not a good sign. Iron is stored in both the liver and spleen-
two organs where I had metastases. My ferritin was at an abnormal level at the time -334- normal is below 100.
I have seen many cancer patients with very high ferritin levels not make it. Women in menopause are known
to have high iron levels because we no longer have monthly menses, which removes iron from the body.

The spleen is too valuable an organ to just remove before checking out some basic things. This is what I
mean by getting to the root cause of your cancer.

Takingcontrol58

 

Believe me, it's ALL been checked.  I've been investigated by heme/onc, including bone marrow biopsy and all possible blood tests.  Infectious disease, hepatology, and rhuematology, all with every possible test done.  I'm an MD myself., and an obsessive researcher.  It's ALL been ruled out.  We don't know why, but we're sure it's not metastatic disease, and no tests currently point to lymphoma.  What I'm concerned about is that about 40% of enlarged spleens of unknown origin eventually go on to become lymphoma.  I'm aware of all the immunizations I would need, and that I'll have to get rid of my wonderful dog (although I'm hoping to just take daily prophylactic antibiotics and keep the dog).  I'm going to see the lymphoma oncologist next week, now that we have all possible consults and tests in, and we will discuss whether or not to do a splenectomy.  One of my concerns is that my chronically low platelets will rule out chemo if I have a recurrence - the splenectomy will take care of that.  I'm having frequent discomfort under my left rib cage at this point.  But I want to wait until after my next Ca-125, internal exam, and set of MRIs, to be sure that they're all normal.  If any of them point to recurrence, I don't know what I'm going to do.  Apparently, they can do the splenectomy laparascopically now, so it should be a very easy recovery, and not leave me suffering with a long recovery, only to recur.

endometrial carcinoma, stage 1b, grade 3. Diagnosed Sept.2019, complete abdominal hysterectomy with removal of 20 lymph nodes, indeterminate for LVSI. Surgery was on Oct 25 and then started 25 IMRT on Dec20. Only 6more to go. No chemo, thank goodness, I only weigh 100lbs and I am 5'9""so my dr figured I probably could not tolerate it and there was no evidence that it would be beneficial. Btw I am 59 and a half yrs old.(The half is important as I was able to pull money from an old IRA to pay some medical bills without an additional penalty from the IRS)

i am still waiting for a referral to genetic counselor to check for Lynch Syndrome due to the "make up" of the tumor And the fact that I also have hemochromatosis and syndactyly  both genetic disorders. So far so good on the radiation only a little issue with diarrhea and I am keeping it in check with probiotics, Imodium and BRAT diet. Fatigue on the other hand.....on Fridays I can barely make the 3mile drive home without thinking I am going to fall asleep at a traffic light!

I'm Armywife, living in San Antonio Texas for another month and then off to conquer retirement.

1. Endometrial endometrioid adenocarcinoma Stage IVB, Grade 2. Positive LVSI and positive pelvic wash.

2. Davinci robotic hysterectomy, 1 round taxol/carboplatin, 1 round carboplatin, 4 rounds taxotere/carboplatin. My chemo was changed due to a severe reaction to the taxol. Doctors were split on whether to do radiation, as there was not absolute evidence that it improved survival in advanced stage cancer. We decided to reserve radiation for recurrence.

3. NED 2 years, 3 months and 15 days from completion of treatment. (But who's counting?)  

4. I was diagnosed at age 57 with only one microscopic episode of spotting and then one significant episode.  I'll forever be thankful that I learned here that I am a statistic of one. Trying my best to live gratefully every minute. 

Theskinnyscot said:

Roll call

endometrial carcinoma, stage 1b, grade 3. Diagnosed Sept.2019, complete abdominal hysterectomy with removal of 20 lymph nodes, indeterminate for LVSI. Surgery was on Oct 25 and then started 25 IMRT on Dec20. Only 6more to go. No chemo, thank goodness, I only weigh 100lbs and I am 5'9""so my dr figured I probably could not tolerate it and there was no evidence that it would be beneficial. Btw I am 59 and a half yrs old.(The half is important as I was able to pull money from an old IRA to pay some medical bills without an additional penalty from the IRS)

i am still waiting for a referral to genetic counselor to check for Lynch Syndrome due to the "make up" of the tumor And the fact that I also have hemochromatosis and syndactyly  both genetic disorders. So far so good on the radiation only a little issue with diarrhea and I am keeping it in check with probiotics, Imodium and BRAT diet. Fatigue on the other hand.....on Fridays I can barely make the 3mile drive home without thinking I am going to fall asleep at a traffic light!

Theskinnyscot,

You're on the home stretch with your radiation treatments, which is always good news!

I, too, had genetic testing for Lynch Syndrome since the pathology of my tumor indicated microsatellite instability. I now see a gastroenterologist to have an endoscopy and colonoscopy every two years (some people prefer to have them annually, but I'm comfortable with the two year cycle).

My siblings also got tested after it was confirmed I have Lynch. Fortunately, my sister with children doesn't have it, so her children don't have to worry about it. My brother does have Lynch but, like me, doesn't have children.

Molly110 said:

Roll Call

Hello,

 

I'm Molly. I don't read or post often, but when I do, I've found this to be a great source of information

 

1. Type of uterine cancer - Stage & Grade: Papillary serous, stage 1B. I don't know the grade. 1B instead of 1A because in one spot where the uterine wall is thinner I had slightly over 50 percent penetration, if that's the correct term. I don't know whether that makes much difference, as I've learned from these discussions that plenty of stage 1 women die and plenty of more advanced stage women do not, as this particular cancer seems nasty and unpredictable.

 

2. Treatment: Davinci total hysterectomy, followed by 6 cycles of carbo/taxol, which I finished 8 days ago. Concurrent with the chemo I had four VBT sessions, which were easy -- thanks to the wonderful radiology team -- and it looks like I will have no side effects from that. I have pretty severe neuropathy from the chemo, especially in my feet, so there was a question on cycles 3-6 whether I would be able to stay on taxol or have to switch to taxotere, which I really did not want to do. Fortunately, my oncology nurse practitioner suggested I try acupuncture, and twice weekly sessions kept the neuropathy at a manageable level so that I could stay on the drugs I started on. (I used the elasto-gel mitts and gel slippers on cycles 2-6; perhaps the neuropathy would have been worse without them.) My brilliant gyno/onco thinks that the neuropathy will be permanent, although at a much less painful level. My acupuncturist is more hopeful. I'm going to continue with acupuntcure as long as I can afford it and hope that the pain will become minor and more or less ignorable. I tried Cymbalta, which works for some women, but not for me. Plus, it woke me up every hour on the hour at night. I also am on alpha lipoic acid and B-12, both with the concurrence of my medical team, by which I mean they said there wasn't evidence of effectiveness but it was okay to try and would not be harmful. I was lucky enough to get big city care in the Chicago suburbs and whatever the outcome for me, I will be forever grateful for the quality of care and compassion I received. 

 

3. Current status: Still feeling a little beaten up by the last chemo, as my red blood cells are low. I also have quite a bit of ringing in my ears from the carboplatin. Now that the chemo is over, I'm looking forward to a chance to heal without another chemo punch looming. My hospital offers lots of rebuilding stuff like yoga and exercise programs, which I plan to take part in, as the hispital is 10 minutes away from my office. I was able to work throughout chemo and radiation and am grateful for that. On the rougher post-chemo days, my wonderful boss allowed me to work from home, which made all the difference.

 

4. Anything else you'd like to share or what you've learned from this journey, etc.:  I am not a brave person, not a warrior or an inspiration or any of the stereotypes. I was so terrified of the ordeal and damage of chemo that I almost didn't do it. I also thought that with this horrible form of endometrial cancer, I would likely die while I was still bald and worn out from the treatment. It's hard to make decisions when your entire life had just been turned upside down. In late August when I was diagnosed, mid January -- the date of my final chemo -- seemed like a lifetime away. What I would like to share is that, for me, it went by pretty fast. It was not fun, but it was nowhere near as bad as I'd feared, and almost before I knew it, it was over. A lot of people offered me a lot of help along the way,  some expected and some unexpected. I let people help me, and I'm really glad that I did.

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.

Molly110 said:

Roll Call

Hello,

 

I'm Molly. I don't read or post often, but when I do, I've found this to be a great source of information

 

1. Type of uterine cancer - Stage & Grade: Papillary serous, stage 1B. I don't know the grade. 1B instead of 1A because in one spot where the uterine wall is thinner I had slightly over 50 percent penetration, if that's the correct term. I don't know whether that makes much difference, as I've learned from these discussions that plenty of stage 1 women die and plenty of more advanced stage women do not, as this particular cancer seems nasty and unpredictable.

 

2. Treatment: Davinci total hysterectomy, followed by 6 cycles of carbo/taxol, which I finished 8 days ago. Concurrent with the chemo I had four VBT sessions, which were easy -- thanks to the wonderful radiology team -- and it looks like I will have no side effects from that. I have pretty severe neuropathy from the chemo, especially in my feet, so there was a question on cycles 3-6 whether I would be able to stay on taxol or have to switch to taxotere, which I really did not want to do. Fortunately, my oncology nurse practitioner suggested I try acupuncture, and twice weekly sessions kept the neuropathy at a manageable level so that I could stay on the drugs I started on. (I used the elasto-gel mitts and gel slippers on cycles 2-6; perhaps the neuropathy would have been worse without them.) My brilliant gyno/onco thinks that the neuropathy will be permanent, although at a much less painful level. My acupuncturist is more hopeful. I'm going to continue with acupuntcure as long as I can afford it and hope that the pain will become minor and more or less ignorable. I tried Cymbalta, which works for some women, but not for me. Plus, it woke me up every hour on the hour at night. I also am on alpha lipoic acid and B-12, both with the concurrence of my medical team, by which I mean they said there wasn't evidence of effectiveness but it was okay to try and would not be harmful. I was lucky enough to get big city care in the Chicago suburbs and whatever the outcome for me, I will be forever grateful for the quality of care and compassion I received. 

 

3. Current status: Still feeling a little beaten up by the last chemo, as my red blood cells are low. I also have quite a bit of ringing in my ears from the carboplatin. Now that the chemo is over, I'm looking forward to a chance to heal without another chemo punch looming. My hospital offers lots of rebuilding stuff like yoga and exercise programs, which I plan to take part in, as the hispital is 10 minutes away from my office. I was able to work throughout chemo and radiation and am grateful for that. On the rougher post-chemo days, my wonderful boss allowed me to work from home, which made all the difference.

 

4. Anything else you'd like to share or what you've learned from this journey, etc.:  I am not a brave person, not a warrior or an inspiration or any of the stereotypes. I was so terrified of the ordeal and damage of chemo that I almost didn't do it. I also thought that with this horrible form of endometrial cancer, I would likely die while I was still bald and worn out from the treatment. It's hard to make decisions when your entire life had just been turned upside down. In late August when I was diagnosed, mid January -- the date of my final chemo -- seemed like a lifetime away. What I would like to share is that, for me, it went by pretty fast. It was not fun, but it was nowhere near as bad as I'd feared, and almost before I knew it, it was over. A lot of people offered me a lot of help along the way,  some expected and some unexpected. I let people help me, and I'm really glad that I did.

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.

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

1. Type of uterine cancer, stage and grade: endometrioid adenocarcinoma, stage 1a, grade 3. 9 lymph nodes removed, negative. Tumor size <1cm. 

2. Treatment: 3 brachytherapy sessions

3. Current status: Being checked every 3-6 months now for lung nodules that were there in pre-operative CT scans and are stable at 3mm and 4mm. Also, a stable liver "something" (maybe a cyst) at 3mm. 

4. I was lucky to find this forum right after my D&C. Everyone was so helpful and calmed me down. I don't have a lot to offer in terms of advice, but my prayers and thoughts go out to everyone fighting this disease here.