Uterine Papillary Serous Carcinoma (UPSC): any others here???
Comments
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Hello Againpjba11 said:Welcome
I came on here this morning to wish Linda the best for today and to see how Marge was doing after chemo. Then I find your post. I am so very sorry. Your world has changed too. You are right... it does certainly feel like a bad dream and we can't wake up. Our bodies have betrayed us. Please come to our site and let us keep you focused on the fact that we are all here together fighting for the chance to be normal again. We are going to get through this and together makes it easier. As you have seen on the post I am a 2 yr survivor and if there is anything I can help you with please ask. God bless.
This might be long but I'm going to try and start from th beginnig of this.
June 2008 my right side hurt and my back hurt. My hometown Dr. thought I had a sprain as I'm the caregiver of my 34 year old handicapped daughter.He gave me ibupropin800 mg.Three weeks went by, it wasn't really helping so I made an appointment with a gynocologist. Had not been to a gynocologist for over 7 years, not very happy with myself about that. Anyway they gave me an appointment with the gynocologist Sept, 15, 2008 and she did a pap smear and had bloodwork done and a mammogram.Dr called me Sept 22, 2008 said I had abnormal pap smear, atypical precancerous glandular cells and she scheduled a endometrial biopsy for me for Oct 7, 2008. In the mean time I had a vaginal sonogram on Oct 1,2008 that she had ordered on my first visit. It showed that everything was fine except for a thickening of my uterus. Did the Emetrio Biopsy Oct 8 in her office (OUCH!) Dr called me Oct 14 and told me I had endometrial cancer on the lining of my uterus and made an appointment for me with an gyn/oncologist for Nov. 5th. Before that appointment I had more tests, A colonscopy and CT scan of chest abdomen and pelvis. At appointment Nov 5 Dr said every thing would be okay that all the test came back good and the type of cancer I had, Stage 1 Endometrial,was cureable all I would probably need was a hysterectomy. Had my hysterectomy Dec 11, 2008 all went well. I had the da Vinci because I wanted to heal fast so I could continue taking care of my daughter. All was great I felt wonderful , was able to give my daughter a bath 4 days after surgery.
My post op appointment was Dec 22, 2008 and thats when th nightmare began. Dr told me she was so sorry but the pathology test came back with stage 2 endometrial serous cancer, a very aggressive cancer.
I will be having 6 rounds 1 every 3 weeks of chemotherapy starting Jan 2 2009.Then radiation.
carboplatin/taxol. I,m affraid for me but more then that very affraid of the future for my daughter
I know this was long, but hopefuly it will help someone else, Teresa0 -
Welcome TeresaTeresa 61 said:Hello Again
This might be long but I'm going to try and start from th beginnig of this.
June 2008 my right side hurt and my back hurt. My hometown Dr. thought I had a sprain as I'm the caregiver of my 34 year old handicapped daughter.He gave me ibupropin800 mg.Three weeks went by, it wasn't really helping so I made an appointment with a gynocologist. Had not been to a gynocologist for over 7 years, not very happy with myself about that. Anyway they gave me an appointment with the gynocologist Sept, 15, 2008 and she did a pap smear and had bloodwork done and a mammogram.Dr called me Sept 22, 2008 said I had abnormal pap smear, atypical precancerous glandular cells and she scheduled a endometrial biopsy for me for Oct 7, 2008. In the mean time I had a vaginal sonogram on Oct 1,2008 that she had ordered on my first visit. It showed that everything was fine except for a thickening of my uterus. Did the Emetrio Biopsy Oct 8 in her office (OUCH!) Dr called me Oct 14 and told me I had endometrial cancer on the lining of my uterus and made an appointment for me with an gyn/oncologist for Nov. 5th. Before that appointment I had more tests, A colonscopy and CT scan of chest abdomen and pelvis. At appointment Nov 5 Dr said every thing would be okay that all the test came back good and the type of cancer I had, Stage 1 Endometrial,was cureable all I would probably need was a hysterectomy. Had my hysterectomy Dec 11, 2008 all went well. I had the da Vinci because I wanted to heal fast so I could continue taking care of my daughter. All was great I felt wonderful , was able to give my daughter a bath 4 days after surgery.
My post op appointment was Dec 22, 2008 and thats when th nightmare began. Dr told me she was so sorry but the pathology test came back with stage 2 endometrial serous cancer, a very aggressive cancer.
I will be having 6 rounds 1 every 3 weeks of chemotherapy starting Jan 2 2009.Then radiation.
carboplatin/taxol. I,m affraid for me but more then that very affraid of the future for my daughter
I know this was long, but hopefuly it will help someone else, Teresa
Teresa,
Welcome! I'm sorry to hear that you are going through all of this also, but glad that you found us. I find a lot of comfort in coming here to talk to ladies going through the same ordeal that I am. I just finished radiation and will soon start chemo (carbo/taxol), probably first week of Feb. I didn't think radiation was too bad, although I was very tired most of the time.
I'll be glad to help you along the way if you need people to talk to.
Take care and God Bless,
Deanna0 -
Thank You!deanna14 said:Welcome Teresa
Teresa,
Welcome! I'm sorry to hear that you are going through all of this also, but glad that you found us. I find a lot of comfort in coming here to talk to ladies going through the same ordeal that I am. I just finished radiation and will soon start chemo (carbo/taxol), probably first week of Feb. I didn't think radiation was too bad, although I was very tired most of the time.
I'll be glad to help you along the way if you need people to talk to.
Take care and God Bless,
Deanna
Peggy and Deanna thank you for the welcome posts... I have all 4 of you girls on my buddy list. Hope that's okay with all of you. As I mentioned before, writing down my thoughts has never been easy for me, but I feel it's very important for me emotionaly to be in contact with all of you,(I'll appolize now for any bad spelling.) Thank you.. Teresa0 -
WELCOME TERESA! & report for my chemo round today!Teresa 61 said:Thank You!
Peggy and Deanna thank you for the welcome posts... I have all 4 of you girls on my buddy list. Hope that's okay with all of you. As I mentioned before, writing down my thoughts has never been easy for me, but I feel it's very important for me emotionaly to be in contact with all of you,(I'll appolize now for any bad spelling.) Thank you.. Teresa
WELCOME Teresa! Although I am always saddened to learn of anyone else with this diagnosis I am so happy that you have found us and hope that you will allow us to be a resource for you. Here you have people currently getting the same chemo and radiation that you will be getting, and who will hold your hand as take this treatment journey together. Here you will find 2 longer-term UPSC survivors that will give you living proof that you can BEAT THIS! Here you have a place where you can talk about ANYTHING and not have to 'filter' what you share like you must do with loved ones that you don't want to further worry or hurt by saying the things that haunt you in the wee hours of the night. Here you have people willing to take your questions to their own oncologists and bring back to you a wider picture of your options and a clearer picture of the side effects of various drug ideas. The "UPSC Sisters" are a warm close family and we welcome you into it and hope that you will stay with us. If you have the time, please read through the entire LOOOOOONG thread of our posts. It will be a fascinating "book" specifically about the journey you are traveling and the 'sisters' that are reaching out to you with open arms.
MY ROUND 3 CHEMO REPORT: First the GOOD NEWS!! (drum roll.....) My CA-125 dropped to 33.1 !!! Within the NORMAL range!! I know that my CA-125s haven't been at all consistent and I should take this news with a grain of salt. BUT, the 3 CA-125's done by this same lab have shown a consistent drop with each round of chemo, and because the news is GOOD, I've decided to embrace it as the TRUTH. My initial post-surgery CAT-scan showed NED (No Evidence of Disease) and I will be having another routine 3-month CAT-scan before my next chemo. If the new CAT-scan is NED,...that's as good as it can get! It means the chemo I am getting is working and we will stick with the planned treatment schedule. Of course, if the CAT-scan turns up anything, they may move up the radiation and do it concurrent with, or sandwiched into the chemo. The BAD NEWS is that all of my other blood work was worse across the board: white count, red count, platelets all still acceptable but not as good as they were. My platelets count was 117 (<100 and you need a transfusion before chemo again). I think platelets are a bone marrow thing and not nutrition-related, but I will see if there is anything I can do over the next few weeks to improve that number. (Any ideas?) I had 5 or 6 nosebleeds with that horrible cold and cough so I knew I might have a platelet problem this round.
PEGGY: For the 1st time, instead of meeting with the head of chemotherapy oncology before my chemo, I met with his Physicians Assistant. She was lovely but I didn't want to get into all my questions about re-occurrence and Intraperitoneal Exfoliation, or discuss the PET-Scan appropriateness for our cancer or the expected April insurance coverage approval. I probably would have asked her, but they were running almost 2 hours behind trying to squeeze in all the missed Christmas Day chemo people into today. Sorry. If Dr White calls me to congratulate me on my CA-125, I'll be sure and ask.
Sorry for the long post! I hope Marge will pop in with her details of how she made out Friday.0 -
Congrats Linda!lindaprocopio said:WELCOME TERESA! & report for my chemo round today!
WELCOME Teresa! Although I am always saddened to learn of anyone else with this diagnosis I am so happy that you have found us and hope that you will allow us to be a resource for you. Here you have people currently getting the same chemo and radiation that you will be getting, and who will hold your hand as take this treatment journey together. Here you will find 2 longer-term UPSC survivors that will give you living proof that you can BEAT THIS! Here you have a place where you can talk about ANYTHING and not have to 'filter' what you share like you must do with loved ones that you don't want to further worry or hurt by saying the things that haunt you in the wee hours of the night. Here you have people willing to take your questions to their own oncologists and bring back to you a wider picture of your options and a clearer picture of the side effects of various drug ideas. The "UPSC Sisters" are a warm close family and we welcome you into it and hope that you will stay with us. If you have the time, please read through the entire LOOOOOONG thread of our posts. It will be a fascinating "book" specifically about the journey you are traveling and the 'sisters' that are reaching out to you with open arms.
MY ROUND 3 CHEMO REPORT: First the GOOD NEWS!! (drum roll.....) My CA-125 dropped to 33.1 !!! Within the NORMAL range!! I know that my CA-125s haven't been at all consistent and I should take this news with a grain of salt. BUT, the 3 CA-125's done by this same lab have shown a consistent drop with each round of chemo, and because the news is GOOD, I've decided to embrace it as the TRUTH. My initial post-surgery CAT-scan showed NED (No Evidence of Disease) and I will be having another routine 3-month CAT-scan before my next chemo. If the new CAT-scan is NED,...that's as good as it can get! It means the chemo I am getting is working and we will stick with the planned treatment schedule. Of course, if the CAT-scan turns up anything, they may move up the radiation and do it concurrent with, or sandwiched into the chemo. The BAD NEWS is that all of my other blood work was worse across the board: white count, red count, platelets all still acceptable but not as good as they were. My platelets count was 117 (<100 and you need a transfusion before chemo again). I think platelets are a bone marrow thing and not nutrition-related, but I will see if there is anything I can do over the next few weeks to improve that number. (Any ideas?) I had 5 or 6 nosebleeds with that horrible cold and cough so I knew I might have a platelet problem this round.
PEGGY: For the 1st time, instead of meeting with the head of chemotherapy oncology before my chemo, I met with his Physicians Assistant. She was lovely but I didn't want to get into all my questions about re-occurrence and Intraperitoneal Exfoliation, or discuss the PET-Scan appropriateness for our cancer or the expected April insurance coverage approval. I probably would have asked her, but they were running almost 2 hours behind trying to squeeze in all the missed Christmas Day chemo people into today. Sorry. If Dr White calls me to congratulate me on my CA-125, I'll be sure and ask.
Sorry for the long post! I hope Marge will pop in with her details of how she made out Friday.</p>
Congratulations Linda on your within normal limits CA-125! I know that it is not always reliable but at least it is dropping with each chemo. I would accept that as positive sign. I hope your post chemo days are bearable!
Marge, I hope you are doing okay post chemo. Hang in there.
Hugs0 -
Teresa
When who ever dished up your plate .... they must have had to use a platter for all that you have on yours. Having a dependent child through all of this is a very big responsibility. My daughter was 9 when I got diagnosed. It has to be worse having your situation, at least my daughter will be independent later. Do you have help that will get you through all of your weeks of treatment? What part of the states are you? I wish I could jump in my car and come to help you through the next few months. Do you have far to go for your medical appointments? Please stay in touch with us here. God Bless.0 -
Crying
Well if you cried tonight we are even... because I cried when I read your first post yesterday. My husband saw me on the computer crying and wondered 'what set me off' I said now there is another one of 'us'. He just shakes his head. This is is certainly the journey of and for our life!! Like I have posted in the past. ....... The unknown is perhaps the hardest part at the beginning. I hope you can go over many of our posts, this might help you understand a lot more of the 'routine' things that could help you emotionally and set you up for which questions you need answered to put your stress level at tolerable. Always ask if you need our opinions on what you are unsure of. We may have had that hurdle too. I hope your daughters dad comes through for you also. You need quiet time to unravel and heal. God Bless.0 -
Diagnosed Dec. 22, 2008 with Stage 2 serous highgrade endometrialindaprocopio said:intraperitoneal exfoliation
Peggy, I'm so sorry about that fire! Did you lose many gifts? I hope your Christmas was still a happy one. Marge should have had her 3rd chemo round Friday and I will have my 3rd chemo on Monday, the halfway point! I will ask my oncologist Monday about intraperitoneal exfoliation and how they determine if that is an issue.
I looked up intraperitoneal exfoliation because they found microscopic cancer cells floating in the peritoneal wash when they did my initial debulking surgery, and my UPSC was 1st found when a wandering exfoliated cell made its way down to where my PAP test was done. So cancer spread through exfoliation has been a nagging worry in the back of my mind. Hopefully the chemo and radiation will knock out any lingering wandering cells, but I did find some good info (easy to understand) about this topic at the John Hopkins ovarian cancer site and will paste it in BELOW, in case any of us face reoccurance years down the road (remembering that they are discussing OVARIAN CANCER here, but do explain this peritoneal coating):
Intraperitoneal exfoliation -- the majority of ovarian tumors grow outward and project into the abdominal cavity, similar to stalks on a plant. The metastatic or spreading cells are exfoliated (similar to exfoliating skin cells) and get caught in the abdominal cavity and float in the abdominal fluid. The process of ovarian cancer spread is analogous to scattering sand across a table – each of the sand particles gets exposed to every part of the surface of the table. Similarly, each metastatic ovarian cancer cell spreads and sticks to each abdominal organ and grows into small tumors. Intraperitoneal exfoliation tends to occur simultaneously with direct extension;
Peritonectomy: This technique is also called peritoneal stripping. It is based on the fact that everything in the abdominal cavity is lined with peritoneum – a one cell layer thick coating, akin to covering everything in the abdomen with cellophane. Ovarian cancer tends not to penetrate the peritoneum, but spreads along the surface. In a peritonectomy, surgeons peel the “cellophane” or peritoneum off the underlying structure. This does not generally compromise the integrity or immunity of the organs since the peritoneum regenerates itself.
Radical Oopherectomy for Frozen Pelvis: A select group of patients will present with massive local extension of the disease. The tumor will involve the uterus, peritoneum, bladder, sigmoid colon, and rectum and basically obliterates all the normal anatomy for the pelvis. It looks like a bucket of cancer sand was poured into the pelvis. Incisions are made in the peritoneum at cancer sites, and the cancer is peeled away along with all of the attached structures towards the center of the pelvis leaving the blood vessels, ureters, and bladder intact. Because the colon projects into the cavity, it is usually involved in the cancer, and so a portion of the colon may be resected as well and hooked back up to the rectum. The procedure leaves a disease-free pelvic area. In order for your surgeon to deliver chemotherapy directly into your abdomen, you will need to have an intraperitoneal (IP port) placed. This is done either at the time of your initial surgery or within a few weeks after you recover from the initial debulking procedure through a laparoscopic approach. The port is placed in the operating room and the procedure takes approximately 60 minutes. The port is the size of a half dollar and will be placed under the skin, just directly over the bottom of your rib cage, in the left upper quadrant of the abdominal wall. The tubing of the port will be tunneled under the skin of your abdominal wall and placed into the peritoneal cavity through a small hole. The tip of the catheter is placed directly into the pelvis. There are multiple small holes along the catheter tubing that facilitate the delivery of chemotherapy.
Metastatic Disease: hematogenous – this type of metastasis is less common and involves spread to the liver or lung parenchyma cells, which are the cells in the organ itself, as opposed to connective tissue or blood vessels. Lung involvement most often occurs as a pleural effusion, which is a build-up of fluid between two layers of a lining covering the lungs called pleura. As opposed to traveling through the blood system to the lungs, it is believed that these tumor cells spread first by intraperitoneal exfoliation up toward the diaphragm, then they implant on the diaphragm and migrate through the diaphragm to the lymphatics and migrate to the underside of the pleural surface of the lung and create the effusion.
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Hello everyone, I've been reading your posts for the last two days and thought I would jumpin.
Not comfortable with writing down my thoughts.
Well to start with i had a da Vinci Hysterectomy Dec 11, 2008 Every thing went well and I went home the next day. Had my hysterectomy and that would be it. No such luck for me... we went to the pathology appointment dec 22, 2008 and the gyno/onc said she was sorry and shocked but that I had stage 2 endomertial serous highgrade cancer. i start my fist chemo jan 2, 2008. The whole thing just feels like a nightmare and I can't wake up from it.Good Luck with your 3rd Chemo tomorrow Linda. My thoughts and prayers will be with you same for you Marge hope your 3rd chemo went well Friday0 -
Hi Allpjba11 said:Teresa
When who ever dished up your plate .... they must have had to use a platter for all that you have on yours. Having a dependent child through all of this is a very big responsibility. My daughter was 9 when I got diagnosed. It has to be worse having your situation, at least my daughter will be independent later. Do you have help that will get you through all of your weeks of treatment? What part of the states are you? I wish I could jump in my car and come to help you through the next few months. Do you have far to go for your medical appointments? Please stay in touch with us here. God Bless.
First thank you Linda for such a wonderful welcome. Congrats on your CA-125 and CAT scan.Hope your blood work starts getting better very soon.I wish they would give us a book before we start this stuff that would tell us what we can do to help ourselves when things aren't right.Maybe someday we can all write that book. Hope the next few days are not to bad for you Linda. Being's I haven't even had my first chemo yet I of course have no idea yet what your feeling, but if your feeling bad I feel for you.....
Peggy, I truely do not know what I'm going to do with my daughter as I have always been the one to take care of her.Her father and I are divorced and he hasn't seen Julie for almost 2 years.I called him the day after I found out what I had. He said he will come and get her the day before chemo and keep her for 4 days. I pray he will keep his word. I have a 41 year old son who is married with 4 children, I'm very close to them have always had my grandchildren around since they were born. They are going to try and rearange their life as much as they can to help me.I have my wonderful husband and he will be helping to. Right now my husband is 1st on the list for a kidney transplant. If they call he will be in Oregon for 5 weeks. I was suppose to go with him but now my brother who lives in New Orleans will be the one out there with him. We live in S California.When you said you would like to come and help me you made me cry. You are so sweet Peggy
Oh my! look at all I have written and I'm the one that said I had a hard time getting words on paper. Better stop now Thank you all for all your care and concern0 -
Hoping Marge is doing well.pjba11 said:Crying
Well if you cried tonight we are even... because I cried when I read your first post yesterday. My husband saw me on the computer crying and wondered 'what set me off' I said now there is another one of 'us'. He just shakes his head. This is is certainly the journey of and for our life!! Like I have posted in the past. ....... The unknown is perhaps the hardest part at the beginning. I hope you can go over many of our posts, this might help you understand a lot more of the 'routine' things that could help you emotionally and set you up for which questions you need answered to put your stress level at tolerable. Always ask if you need our opinions on what you are unsure of. We may have had that hurdle too. I hope your daughters dad comes through for you also. You need quiet time to unravel and heal. God Bless.
Has anyone heard from Marge lately? I'm hoping that all went as well as can be expected with the last treatment, and that your labs were good. Just thinking about you.
Linda, hope you are doing alright. Hang tough!
Teresa, hoping you are feeling okay under the circumstances. Be strong, it sounds like things are coming through for help with your daughter during treatment. I can't imagine the stress you must be feeling. Come here to talk anytime. Hang in there. I agree with Peggy, the unknown is the most difficult part. You are a strong lady, I can tell from your posts. Let me know if I can help you with anything.
Hugs and blessings,
Deanna0 -
2 days past Chemo, Round 3: Feeling sleepy and fragile today
Yesterday I was a flurry of activity, and put in a 10-hour work day at my computer, closing out my business year (profits up 20% over last year!) and touching base with my clients,...apparently aflame with that unnatural steroid-induced post-chemo 'hamster days' energy. Then I suddenly got EXHAUSTED and light-headed, and slept for 12 hours!! And I feel like I could crawl right back into bed now, but I want to get some fluids in me and eat some Fiber One and get my sluggish digestive system functioning. I forgot all about New Year's somehow, and was hoping to get out this morning and buy a pork roast and sauerkraut to make for tomorrow and to buy a bottle of champagne for midnight. But it's snowing HARD here, and I feel too 'wifty' to get behind the wheel in a snowstorm. So I may just let New Year's pass me by this year, unless my husband will do the shopping. He has little confidence that I will be up at midnight anyway: smart man! And alcohol is a No-No when platelets are low anyway. I used to be a pretty rowdy partier, but it's been a few years since then. And 2009 just seems to be a continuation of 2008,...not like I will feel NEXT YEAR when 2009 becomes 2010 and all this cancer treatment will be behind us all. THEN we will celebrate,...HARD! NEXT year, surviving the celebration hang-over will be our biggest challenge!! HA!
I haven't heard from Marge and am hoping that she is just busy with her holiday company still. She is 3 days ahead of me in her chemo rounds, so she may be in the midst of those miserable few days of the joint aches and nausea that are fairly predictable 4 to 6 days after chemo. For me it's getting a little harder with each round, because my body and my counts recover a little less each time. But it's still do-able, and I know in a week or so that I will feel much better than today. I am grateful to not be nauseated or in pain today, just sleepy and wifty. And I plan to give in to that and sleep.
I wish you all a VERY HAPPY NEW YEAR! I cannot express how much your support and friendship mean to me.0 -
Happy New Year to all!pjba11 said:Happy New Year.
Happy New Year to all of you wonderful women!! May God be with you and may your new year bring comfort and happiness. It is -32 here. But my heart is warm knowing your friendships will continue to make this journey easier. Heal in Jesus name. Peggy
Here's wishing you all a Happy, Blessed and Healthy New Year! I know we have a ways to go in treatment, but we are strong and make one another stronger. Thanks for being here, peace to all of you.
Deanna0 -
TERESA: 1st chemo go okay? MARGE; you out there??? Anyone?
I guess I'm procrastinating getting myself cleaned up and dressed today, or I'm missing you all, but I find myslef re-reading our posts here. If I understood correctly, Teresa had her 1st chemo yesterday, so I'm giving a shout-out to Teresa to ask how it went. And Marge hasn't yet checked in since her 3rd chemo round over a week ago. And I'm wondering if Deanna's wonderful 'break' is coming to a close and when she starts chemo. And Peggy's desired PET scan, any news there?
I'm such a social person, and my low blood counts are keeping me too isolated. I am light-headed just often enough to not want to drive my car, and my friends and family stay away for fear of exposing me to something they've been exposed to (and in Pennsylvania in the winter, seems like all the world has a cold or a virus). For the last 3 nights, I have slept 12 hours each night, and still felt the need to take a nap each afternoon, so my blood counts must be really dropping after last Monday's chemo. My hope is that giving in to this sleepiness is helping my body recover (all but the CANCER cells: DIE! CANCER, DIE!) Yesterday I carried a load of wash down the stairs and had to sit down on the floor when I got to the washing machine, to catch my breath. ME! Someone who, in August, could run 10 miles at full gallop and climb a tree like a monkey! Maybe all this sleep is because I'm depressed?? Everything I eat tastes just awful, and yet I make myself shovel it in and swallow, but I have still lost 5 pounds since Christmas. Yesterday I made a favorite dish of one of my best friends (tuna noodle casserole) and lured her here for a visit with it. She's used to me hopping in the car and going shopping with her and out to eat someplace nice, so I'm probably not nearly as entertaining to be with as I once was. I try not to talk about my symptoms and worries, but of course, they dominate my thoughts and sneak out anyway. I miss my grandkids terribly, only seeing them for brief 'hugs and kisses' visits instead of long multi-day sleep-overs. (wow. this is turning into a pity-party, isn't is?? sorry.)
My chemo oncologist just called to congratulate me on my good CA-125, thank me for the "I Love the Smell of Chemo in the Morning" baseball hat I left for him with his Physicians Assistant lat Monday, and to say that he would be meeting with the radiation oncologist after my CAT-scan next week. They are going to discuss if they want to sandwich in some of the radiation now that my CA-125 is normal. The chemo-onc still seems very satisfied with my white counts and said he'd let my platelets (currently 117) drop way down in the double-digits before he would feel compelled to stop my chemo. So maybe I better stop babying myself and get dressed and start living my life again! If the oncologist thinks I'm doing good, then I better believe that too! I apologize for the whining.0 -
Whining allowed!lindaprocopio said:TERESA: 1st chemo go okay? MARGE; you out there??? Anyone?
I guess I'm procrastinating getting myself cleaned up and dressed today, or I'm missing you all, but I find myslef re-reading our posts here. If I understood correctly, Teresa had her 1st chemo yesterday, so I'm giving a shout-out to Teresa to ask how it went. And Marge hasn't yet checked in since her 3rd chemo round over a week ago. And I'm wondering if Deanna's wonderful 'break' is coming to a close and when she starts chemo. And Peggy's desired PET scan, any news there?
I'm such a social person, and my low blood counts are keeping me too isolated. I am light-headed just often enough to not want to drive my car, and my friends and family stay away for fear of exposing me to something they've been exposed to (and in Pennsylvania in the winter, seems like all the world has a cold or a virus). For the last 3 nights, I have slept 12 hours each night, and still felt the need to take a nap each afternoon, so my blood counts must be really dropping after last Monday's chemo. My hope is that giving in to this sleepiness is helping my body recover (all but the CANCER cells: DIE! CANCER, DIE!) Yesterday I carried a load of wash down the stairs and had to sit down on the floor when I got to the washing machine, to catch my breath. ME! Someone who, in August, could run 10 miles at full gallop and climb a tree like a monkey! Maybe all this sleep is because I'm depressed?? Everything I eat tastes just awful, and yet I make myself shovel it in and swallow, but I have still lost 5 pounds since Christmas. Yesterday I made a favorite dish of one of my best friends (tuna noodle casserole) and lured her here for a visit with it. She's used to me hopping in the car and going shopping with her and out to eat someplace nice, so I'm probably not nearly as entertaining to be with as I once was. I try not to talk about my symptoms and worries, but of course, they dominate my thoughts and sneak out anyway. I miss my grandkids terribly, only seeing them for brief 'hugs and kisses' visits instead of long multi-day sleep-overs. (wow. this is turning into a pity-party, isn't is?? sorry.)
My chemo oncologist just called to congratulate me on my good CA-125, thank me for the "I Love the Smell of Chemo in the Morning" baseball hat I left for him with his Physicians Assistant lat Monday, and to say that he would be meeting with the radiation oncologist after my CAT-scan next week. They are going to discuss if they want to sandwich in some of the radiation now that my CA-125 is normal. The chemo-onc still seems very satisfied with my white counts and said he'd let my platelets (currently 117) drop way down in the double-digits before he would feel compelled to stop my chemo. So maybe I better stop babying myself and get dressed and start living my life again! If the oncologist thinks I'm doing good, then I better believe that too! I apologize for the whining.
Hi Linda,
I think you are doing great and I also think you deserve to whine once in a while. My oncologist said don't hold back the emotions, just let them out. I wouldn't worry about it, unless you can't pull yourself out of it. It seems to me that you have a pretty good attitude about it all. My onc put me on an antidepressant right after surgery. I've never been a pill person, but I was (and still am sometimes), having trouble sleeping. He thought the antidepressant might help.
I've had a few weepy days lately. New Years Eve I was fixing my hair and decided I didn't want to lose my hair! I just let the tears flow, in the big picture it's such a little thing. Then yesterday I shed a few when I realized I probably won't be able to go to my granddaughter's 4th birthday party. I am expecting to start chemo the last week of the month or the first week and next. Either way, I probably won't be up for an hour long drive to be around a bunch of 3-4 year olds a week or 2 after chemo.
My next appt. with the onc is on the 12th with chemo teaching on the 19th. Port placement will probably be somewhere in between those 2 appts. Then I will start chemo soon after. I am ready, the sooner I start, the sooner I will be done!
I'm worried that we haven't heard from Marge for a while. I hope she is okay.
You hang in there. In my opinion the sleeping is your body healing! Next week will be better.
Love and hugs. God bless you!0 -
!st Chemo is okay so far....deanna14 said:Whining allowed!
Hi Linda,
I think you are doing great and I also think you deserve to whine once in a while. My oncologist said don't hold back the emotions, just let them out. I wouldn't worry about it, unless you can't pull yourself out of it. It seems to me that you have a pretty good attitude about it all. My onc put me on an antidepressant right after surgery. I've never been a pill person, but I was (and still am sometimes), having trouble sleeping. He thought the antidepressant might help.
I've had a few weepy days lately. New Years Eve I was fixing my hair and decided I didn't want to lose my hair! I just let the tears flow, in the big picture it's such a little thing. Then yesterday I shed a few when I realized I probably won't be able to go to my granddaughter's 4th birthday party. I am expecting to start chemo the last week of the month or the first week and next. Either way, I probably won't be up for an hour long drive to be around a bunch of 3-4 year olds a week or 2 after chemo.
My next appt. with the onc is on the 12th with chemo teaching on the 19th. Port placement will probably be somewhere in between those 2 appts. Then I will start chemo soon after. I am ready, the sooner I start, the sooner I will be done!
I'm worried that we haven't heard from Marge for a while. I hope she is okay.
You hang in there. In my opinion the sleeping is your body healing! Next week will be better.
Love and hugs. God bless you!
Had my first chemo yesterday, it took 6 hours. I slept through most of it. I'am feeling okay this morning but am having trouble with the blues, can't seem to snap out of them. they gave me a precription for Adivan to try and help with the anxiety and sleeplessness. When this all started my CA-125 was 20, now its 115. My gyn/onc said it's not unusual for it to rise after surgery but that she was surprized it was over 60. I think her being surprized at everything that happens to me is making me depressed.Thanks to you girls I asked my .dr how many nodes she removed, she said 20 and all were cancer free. Still because I know this cancer is so AGRESSIVE that didn't mean much to me. Good news! Julie's dad Steve picked her up the day before chemo so I'am having a few days to myself. Have to say I'am enjoying the break.He will bring her back tommorrow night. I sure hope I will be able to take care of her through this.
Linda, I'am not having the Hampster effect that you had, maybe they left something out of my chemo cocktail.. I hope you will be feeling better soon for your sake and mine. I'am watching you girls closely so I can have an idea of what I'am going through and what I may be going through. Like you Linda I miss my grandchildren something awful. I've really got to pull myself together so I can see them more.
Marge, hope we hear from you soon and that your doing okay, Deanna hope all goes well with your next step, Chemo..
Bless You All
Teresa0 -
My CA-125 went WAY UP after my surgery.Teresa 61 said:!st Chemo is okay so far....
Had my first chemo yesterday, it took 6 hours. I slept through most of it. I'am feeling okay this morning but am having trouble with the blues, can't seem to snap out of them. they gave me a precription for Adivan to try and help with the anxiety and sleeplessness. When this all started my CA-125 was 20, now its 115. My gyn/onc said it's not unusual for it to rise after surgery but that she was surprized it was over 60. I think her being surprized at everything that happens to me is making me depressed.Thanks to you girls I asked my .dr how many nodes she removed, she said 20 and all were cancer free. Still because I know this cancer is so AGRESSIVE that didn't mean much to me. Good news! Julie's dad Steve picked her up the day before chemo so I'am having a few days to myself. Have to say I'am enjoying the break.He will bring her back tommorrow night. I sure hope I will be able to take care of her through this.
Linda, I'am not having the Hampster effect that you had, maybe they left something out of my chemo cocktail.. I hope you will be feeling better soon for your sake and mine. I'am watching you girls closely so I can have an idea of what I'am going through and what I may be going through. Like you Linda I miss my grandchildren something awful. I've really got to pull myself together so I can see them more.
Marge, hope we hear from you soon and that your doing okay, Deanna hope all goes well with your next step, Chemo..
Bless You All
Teresa
My CA-125 'PRE-surgery' was 50, and POST-surgery went up to 190! My chemo oncologist decided that the pre-surgery reading must have been a false one, and that readings too soon after surgery are often wrong, and decided to use my 1st 'pre-chemo bloodwork' CA-125 of 97 as my 'base line' number. My 2nd pre-chemo bloodwork took that number down to the 50's, and my 3rd pre-chemo bloodwork took it down to the 30's. My 1st 2 CA-125's were done at another facility, and most oncologists really only trust their own labs. And sometimes CA-125's are simply not reliable indicators for some people, ever. (Peggy and Deanna can tell you about their experiences with that, and I think Marge also has always had really low CA-125s.
Yes, the "I'm so surprised!" reaction of medical professionals is disheartening. But I really think this cancer is so rare, and that they really are surprised to see this serious cancer in what looks like a healthy woman. All along they predicted for me that it would turn out to be nothing, and then later they were so sure that they caught it really early,...and were 'surprised' when they were wrong.
But you have some WONDERFUL things in your favor! All 20 lymph nodes clean: that's sooooooo good! They found miscroscopic cancer in one of my lymph nodes and that's enough to make me at much greater risk of more distant re-occurance than you are. You can feel pretty secure that your cancer was not yet on the move before your surgery, that they sliced out ALL of your cancer during your surgery and that your body may already be cancer-free. That shouldn't sway you from doing the whole aggressive chemo/radiation treatment schedule (YOU NEED TO DO THIS!), but in your heart, you can think of this as a 'precaution' more than a treatment.
The 'hamster days' for me are a reaction to the 15 steroids I take right before chemo that jazz me up to the sky. They make me aggressive when I talk, chatting incessently and interrupting people to get my ideas across, spouting out opinions I would ordinarily keep to myself, almost obnoxious, (although when I apologize people always say "No No; we found you charming", etc., but I can hear myself.) And I can't sleep. And then a couple days later, I crash and I'm a tired version of my normal self. And 4 or 5 days after chemo, Marge and I both experience some joint aches, mild nausea and changes in how food tastes. That only lasts a couple of days also. The week in the middle BETWEEN chemos, you should feel pretty good, but will be most vulnerable to infections and need to be super-careful who you come in contact with. I bought surgical masks, and wear them during that 'vulnerable week' if I go to a crowded place and to have handy in case anyone visits me that is sick. I always buy a new toothbrush and use antibacterial wipes and sprays and I don't take tub baths, and I eat yogurt daily to help re-balance my digestive bacterias. Then the week BEFORE your next chemo you should feel almost your old self, as your counts rise and your body recovers. I plan all my family times, lunches out with friends and business appointments for that week-before-chemo, and try and have a sleepover with the grandkids to catch up. You will fall into a routine pretty quickly, and can fairly accurately predict when you'll be dealing with side effects. Each chemo round it gets a little bit harder but just a little bit. But it's all do-able, and lots of people work straight through their entire treatments and you'd never know they were sick. I pray that it will be that way for you. And DEANNA, you just may be able to make that birthday party!
You've had a lot to take in the last couple of weeks. Having cancer is HUGE, and the idea is still so NEW for you. And I admit that I did worry that ALL of the information and shared worries and all that we have posted on this Discussion Board would be overwhelming for you all at once. I well remember that my nights of hardest crying were the first nights after researching my own disease; knowing the possibilities and facing my mortality was terrifying. That haunting terror will go away, Teresa. Hope will replace it. Determination will replace it. And even Acceptance fits into how you will deal with all of this. I think we all have to go through the stages of grieving for ourselves: the denial, followed by the depression, followed by the anger and then we come out on the other side determined, hopeful, and accepting. MOST of the time! Some days better than others. ((((Teresa)))))0 -
Good job!!lindaprocopio said:My CA-125 went WAY UP after my surgery.
My CA-125 'PRE-surgery' was 50, and POST-surgery went up to 190! My chemo oncologist decided that the pre-surgery reading must have been a false one, and that readings too soon after surgery are often wrong, and decided to use my 1st 'pre-chemo bloodwork' CA-125 of 97 as my 'base line' number. My 2nd pre-chemo bloodwork took that number down to the 50's, and my 3rd pre-chemo bloodwork took it down to the 30's. My 1st 2 CA-125's were done at another facility, and most oncologists really only trust their own labs. And sometimes CA-125's are simply not reliable indicators for some people, ever. (Peggy and Deanna can tell you about their experiences with that, and I think Marge also has always had really low CA-125s.
Yes, the "I'm so surprised!" reaction of medical professionals is disheartening. But I really think this cancer is so rare, and that they really are surprised to see this serious cancer in what looks like a healthy woman. All along they predicted for me that it would turn out to be nothing, and then later they were so sure that they caught it really early,...and were 'surprised' when they were wrong.
But you have some WONDERFUL things in your favor! All 20 lymph nodes clean: that's sooooooo good! They found miscroscopic cancer in one of my lymph nodes and that's enough to make me at much greater risk of more distant re-occurance than you are. You can feel pretty secure that your cancer was not yet on the move before your surgery, that they sliced out ALL of your cancer during your surgery and that your body may already be cancer-free. That shouldn't sway you from doing the whole aggressive chemo/radiation treatment schedule (YOU NEED TO DO THIS!), but in your heart, you can think of this as a 'precaution' more than a treatment.
The 'hamster days' for me are a reaction to the 15 steroids I take right before chemo that jazz me up to the sky. They make me aggressive when I talk, chatting incessently and interrupting people to get my ideas across, spouting out opinions I would ordinarily keep to myself, almost obnoxious, (although when I apologize people always say "No No; we found you charming", etc., but I can hear myself.) And I can't sleep. And then a couple days later, I crash and I'm a tired version of my normal self. And 4 or 5 days after chemo, Marge and I both experience some joint aches, mild nausea and changes in how food tastes. That only lasts a couple of days also. The week in the middle BETWEEN chemos, you should feel pretty good, but will be most vulnerable to infections and need to be super-careful who you come in contact with. I bought surgical masks, and wear them during that 'vulnerable week' if I go to a crowded place and to have handy in case anyone visits me that is sick. I always buy a new toothbrush and use antibacterial wipes and sprays and I don't take tub baths, and I eat yogurt daily to help re-balance my digestive bacterias. Then the week BEFORE your next chemo you should feel almost your old self, as your counts rise and your body recovers. I plan all my family times, lunches out with friends and business appointments for that week-before-chemo, and try and have a sleepover with the grandkids to catch up. You will fall into a routine pretty quickly, and can fairly accurately predict when you'll be dealing with side effects. Each chemo round it gets a little bit harder but just a little bit. But it's all do-able, and lots of people work straight through their entire treatments and you'd never know they were sick. I pray that it will be that way for you. And DEANNA, you just may be able to make that birthday party!
You've had a lot to take in the last couple of weeks. Having cancer is HUGE, and the idea is still so NEW for you. And I admit that I did worry that ALL of the information and shared worries and all that we have posted on this Discussion Board would be overwhelming for you all at once. I well remember that my nights of hardest crying were the first nights after researching my own disease; knowing the possibilities and facing my mortality was terrifying. That haunting terror will go away, Teresa. Hope will replace it. Determination will replace it. And even Acceptance fits into how you will deal with all of this. I think we all have to go through the stages of grieving for ourselves: the denial, followed by the depression, followed by the anger and then we come out on the other side determined, hopeful, and accepting. MOST of the time! Some days better than others. ((((Teresa)))))
You are so right in your last post Linda. I commend you for this wonderful spirit you bring us. Teresa I am glad that your first chemo session is done. Now keep the faith and continue to heal. I hope that you can get some help with Julie for the next few weeks. You really need to rest. I still think one of the the biggest factors is not to stress. Stress can rule as bad as this cancer shadow over us. Deanna has the dread of still unknowing how the chemo will react, I pray for you each day. Marge... where are you. ?? We get worried just like mother hens when our 'chicks' don't check in. I hope to hear from our longest survivor again soon too. I have a great idea.... soon this whole site will be known as the NED site. We can all be the NED sisters. Any one in favor of that idea?? Stay ahead of the post holiday downers!!!!0 -
SORRY FOR STAYING AWAYpjba11 said:Good job!!
You are so right in your last post Linda. I commend you for this wonderful spirit you bring us. Teresa I am glad that your first chemo session is done. Now keep the faith and continue to heal. I hope that you can get some help with Julie for the next few weeks. You really need to rest. I still think one of the the biggest factors is not to stress. Stress can rule as bad as this cancer shadow over us. Deanna has the dread of still unknowing how the chemo will react, I pray for you each day. Marge... where are you. ?? We get worried just like mother hens when our 'chicks' don't check in. I hope to hear from our longest survivor again soon too. I have a great idea.... soon this whole site will be known as the NED site. We can all be the NED sisters. Any one in favor of that idea?? Stay ahead of the post holiday downers!!!!
This third chemo round hit me hard this week. Like you Linda went to do some laundry and had to sit down, thought I was going to pass out. I slept most of Monday, all of Tuesday and most of Wednesday. Wednesday afternoon I had to yell for my daughter. I had the runs and felt like I was going to pass out in the bathroom. My equilibrium is off and I feel like I'm going to fall over. I think it's from the Benedryl they gave me and it's messing with my sinus'. I didn't feel tired yesterday or today, just feel like I'm going to fall over.
Welcome Theresa, my heart and prayers are with you.
I'm signing up for Tai Chi, I heard it's great for stress. It connects the mind, the body and the spirit.
Peggy, I'm all for the NED Sisters! Maybe some time down the road we all can meet somewhere.
Happy New Year to All and GO EAGLES!!!!
MIND, BODY AND SOUL!!!!
Hugs0 -
((((Marge))))) How closely we mirror each other's experiences!
Wow. I can feel you holding my hand all these many miles away, Marge; we are so much in the same place in this journey. I am still a couple days away from my predicted LOWEST white/red count week of this round, and already I can feel my heart pounding when I reach the top of the stairs, trying to get oxygen from my low-red-count blood. I imagine I will be as light-headed as you are by mid-week; already I know that I shouldn't drive my car. I started taking 'SLOW-FE', a time-released iron tablet recommended by the Physician's Assistant when I asked her if I should go back on iron tablets. Slow-FE is available without a prescription at drug stores and is supposed to be a lot easier on your digestive system than standard iron tablets. Low red counts make it hard for your blood to deliver oxygen to your organs and muscles, so it seems worth a try to build up your iron. But call your oncologist for the okay if you're thinking of adding an iron supplement to your diet. I'm trying to eat spinach each day, too, just in case Popeye was on to something!
My taste buds are better now, and I just had a piece of Tiramiso that tasted GREAT! I'm all for the 'UPSC Sisters' becoming the 'NED Sisters' by winter's end! And yes, we need to meet face-to-face when we are all well, maybe someplace crazy like Vegas or NYC, or someplace spiritual like Monument Valley or the ocean! And each of you is always welcome here at my home, any time.0
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