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Uterine Papillary Serous Carcinoma (UPSC): any others here???

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

I know what you two are going through just to find a clinical trial for us, much less get to be in one. It might work to just call your oncology nurse and ask her to fax or mail you the exact trial information they are in. I have felt that the nurses usually do all of the things that really help us. So glad all of you are hanging tough!!!!!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

49! You're still a BABY! I hope you have a wonderful day! ((((((Marge))))))

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I woke up feeling wonderful. I don't feel tired just a little fuzzy and weird but I can deal with that. I found that if I eat every two to three hours it's works the best to keep the strength up.

How are you today?

Hugs

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I didn't want to be a downer today, so waited to post until I felt better. My joints are still achy, but the nausea is gone and I just made myself some scrambled eggs and toast and a baked potato and now I feel good. It snowed here today, HARD, and we have 3 or 4 inches of snow on the ground. I wanted to just indulge myself and stay in my pajamas all day (which I did) but I don't think I'll do that again. It seemed to worry my husband Vic too much to see me schelp around all day in a bathrobe, (even though I did write a state grant proposal today and submitted it electronically so I did have a productive work day.) But I think I'll get a shower, put on a fresh nightgown, light the fireplace, and watch 'Survivor' with Vic on TV this evening, so he knows I'm okay. He's worried that it is so early in the chemo process for me to be spending the day in bed. I know it is, and I didn't stay there all day. And I'm just so used to feeling 100% healthy, so these little aches and discomfort are all pretty new to me. I think of all the times he took to his bed all day when he had the sniffles, something I NEVER do. And so I thought I deserved a little down time today. But it's not worth it if it makes him worry. If the roads aren't too bad, tomorrow my step-mother is coming up for a visit, so THAT will motivate me to get dressed and paint my face! Tuesday the 1st of my Thanksgiving company will start arriving. So I need to snap out of this little funk, NOW!

deanna14
Posts: 733
Joined: Oct 2008

I'm sorry you were feeling poorly, but I am glad you are feeling better this evening. I am proud of you for relaxing today, you do deserve it. Snow... I sure hope the weather holds here until after the 29th.
I was at the mall today and decided to stop in one of the salons and have my hair trimmed. The lady who cut it and I started chatting. Her best friend just finished chemo in August for ovarian cancer. She just now has enough hair to start t******** it again. Her latest scans showed NED. Anyway, she offered to take care of my hair when I start treatment. I'm going to go see her after the wedding and she is going to progressively start cutting it shorter until it starts coming out and then she will clip it all off. I think it is odd how I just happened to walk in to this salon... Devine intervention?
Take Care of you...
Marge, I hope you had a very great birthday, despite the fuzzy headedness.
Hugs to all... I hope you both feel better tomorrow.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

The one thing I do miss living in the south!

Linda, take care of yourself. I believe the fourth day after chemo was the hardest for me. And I am truely finding that eating small amounts every 2 to 3 hours is the best. I got through yesterday with ease, no naps and as you can see I am up bright and early this morning. I do have some muscles that ache but it feels like I've been working out and having a little blood in my nose but it might be from the heat in the house. Been waking up to the 20's here in NC, very cold for us...

As far as snapping out of the little funk, not so sure. I've read about chemo brain, even seen some t-shirts. The foggy head might be around awhile. I went to work yesterday and told the guy I work with that I felt like a newly born colt, all wobbly. But what a way to think about it, newly born.

I know we are mothers and wives Linda and are used to taking care of everyone else but ourselves, it is a hard thing to let go and not worry about them but you need to let you heal. You need to rest your body, it is going through h***.

I usually do Thanksgiving at my house every year and my sister-in-law does Christmas but I passed the hat and am letting her do Thanksgiving. This whole process has been so fast that I feel I need to slow down. As far as Christmas, not sure if I'll do that either. My third chemo treatment is on the 26th. My heartaches for Christmas time though. My son was going to come home on the 19th with his family but my grandson Joey turns 1 on the 16th. The Army will not change his doctors appointment so he will be having all his shots on that day. I asked lots of questions during chemo and the nurse said that I can not be around any live viruses. Joey would have to have his polo vaccine 10 days before seeing me. They can't come home anytime after that. He reuped and changed his MOS so he is going to school and if he misses any of that he would have to recycle and I believe his school is much more important.

I'm calling the doc today, they have me set up to see the radiologist on Tuesday. I'm having vaginal cuff radiation and I believe he's going to want to exam and measure me. I haven't had six weeks of recovery yet and I'm not sure I want him doing all of that yet! Nothing in the virjaja for six weeks, that's doctors orders. :)

Deanna, it is amazing how God brings people into our lives and I pray that your wedding day is sunny and warm. My daughter and I are going wig shopping today, that ought to be good for a laugh.

Stay warm, put on some soothing music and relax. MIND, BODY AND SOUL!

Hugs and Prayers

Saw a t-shirt I want. It says "Cancer, you picked the wrong Bi***".

So Me, never lost my Jersey attitude.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I have that T-shirt (My 'fighting shirt' for chemo days!) only mine says "Cancer, you picked the wrong BROAD". (femailcrations.com) I chickened out on the B**tch one. I'm trying to decide if I really would wear a great baseball cap I found online. On the front it says "I love the small of chemo in the morning", and on the back "Smells like remission." I know this stuff is corney, but I also think it helps psyche me up a little and makes the oncology staff smile. Although I must admit that when I went for my first chemo, my shirt was boasting a braver game than my own almost-crying face. But, for a good laugh, Google "chemo in the morning" and see the PROFANE cancer shirts there are out there, really funny ones that I'd surely get if I wasn't a respectable grandma.

MARGE: are you going for chemo every week? If so, you must be getting smaller doses than I am?? I only go every 3 weeks. My 6 rounds of chemo will take 21 months. Are you going to have your internal radiation simultaneously with your chemo? I met with the radiologist FIRST before the chemo doctor, and he did do an internal at 4 weeks that I hated and worried about, as I had a little pink when I wiped after that exam. But I've been fine since.

I was worried last night that I wouldn't be able to sleep because my knees and feet were so achy. But I took a couple Ibrupopen (No idea if that's okay or not) and shoved some pillows between my achy bones, and I slept just fine.

SEX is a topic of discussion at our house now, with my 8-week-surgery-anniversary coming up December 10th. I'm so dumb about some of this, and haven't had any conversations with my doctors about this at all. If they took out my cervix, is my vagina SHORTER now, or the same length? Are there still scratchy stitches up there? The 'chemo' booklet they gave me at the doctors says "wear a condom",...do they mean even with my husband?? We've never ever used a condom before so that's one more wierdness to add to this. I can't imagine how sexy I will be with this new huge scar snaking up my torso, a bald head (probably), and achy grandma joints and dry newly-healed vagina. And yet we still seem to be looking forward to this! I guess it's all a part of wanting to LIVE and be close and comfort each other. I'm thinking of wearing a low-cut long sleeveless ribbed undershirt the 1st time, for a sexy look that still covers my incision scar. I can't decide what to do about my head if I'm bald; a wig seems too wierd for bed. I can't believe I'm posting this. But who can I talk to about this, if not you guys? Any advice?

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

My chemo treatments are every three weeks for 18 weeks. 6 rounds and yes they are going to do radiation at the same time. Merry Christmas!

I don't believe the vagina is shorter but I asked the nurse during chemo where does the sperm go? Did they stitch the end of the vagina or leave it open? Had her laughing and she said she never thought of it and was going to find out. The things we think of. My husband says the way my incision is it makes me look like I have another butt. He was embarrassed after he said it but it made me laugh... Haven't thought much about intercourse much yet since I have a few more weeks to go.

My hair isn't falling out yet. They told me that it would take about three weeks for it to start and by the end of the treatment all my hair will be gone.

New born baby. :)

deanna14
Posts: 733
Joined: Oct 2008

With the upcoming wedding, sex is a common topic at my house also. I'll give you my understanding, but still talk to your doctor. It is akward to talk to your doctor about, but you can do it. I said you aren't supposed to have to talk about these things with anyone but your significant other. I'm pretty sure they do sew up the top of the "new" vagina. I say that because the top of mine was slow to heal. This is where the collecting lymph fluid was escaping for a while, but it is healed now. I have read that your vagina may be shorter. Shouldn't be any sutures, they should have dissolved. We were given the go ahead last week, told to take it easy, use Astroglide and if it hurts, don't do it.

As for the scar... my opinion, your husband loves you. You are going to think about that scar a lot more than he will. Same for the bald head. He loves you so much and sees past the scars to the person you are and the person he loves. If it makes you feel better, wear the undershirt. I think he would tell you that you don't need it, that he loves you for who you are, not a perfect body! If he is still around to go through all of this with you, he's not going to think twice about the scars or bald head.

Ladies, have a great day. Take care of yourselves.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

I was told the term for the end of the vagina where the brachy is placed and where the highest recurrence could be is called the viginal cuff. I lost 1/3 of my vagina when I had surgery.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

I want that in a tatoo.....

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

I have to go on a secret trip with my husband today.... but I will comment on some your questions when we get back. I had to laugh as I look back at one of the times I saw myself in the mirror after I lost my hair, my brows, and my lashes, my round moon chemo face, I felt like a turtle without a shell!!

groundeffect
Posts: 651
Joined: Mar 2003

Hi,

While I didn't have UPSC, I did have endometrial uterine cancer diagnosed, and was found to have ovarian cancer when I had a hysterectomy/oopherectomy. I was not treated specifically for the uterine, which was staged 1b, but I was treated with carboplatin/taxol for the ovarian (1c). I finished my chemo early in 2003, about the time I joined a local support group for ovarian cancer.

You asked about avastin. I knew a woman who took it about 3 years ago, and she had very good results for a while, but it caused her blood pressure to go through the roof, and she had to try something else. She had high blood pressure to begin with, so that was no surprise. I've read good things about avastin being used to treat OVCA.

I didn't read through all of the posts in this discussion (you all have certainly been busy!), but if you have any questions about CA-125 levels, I or the other women on the OVCA board can probably answer your questions. I will say a couple of things, though; CA-125 readings can be thrown off by any infection or inflammation, and it's not considered a reliable indicator, particualarly in women of child-bearing age. It's not a diagnostic tool, but will compell a doctor to look further if it's high. (Normal range is 0 to 20)

It's interesting that chemo is being used for this form of uterine cancer. I would recommend that you pick up a copy of "Gilda's Disease" by Steven Piver and Gene Wilder. Dr. Piver is associated with Roswell Park in Buffalo, and I read this book and then purchased two copies so I could use it for reference and lend a copy. It's a pretty easy read, and I think it explains the typical chemo treatments that are still being used for ovarian cancer (considering it was published in 1994, it's about time newer things to be found), and how they work.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I think that UPSC and ovarian cancer are treated almost the same way, with total hysterectomy and staging, 6 to 8 rounds of carboplatin/taxol (3 weeks apart), 25 external pelvic radiation treatments over 5 weeks, and 2 to 3 weeks of vaginal cuff radiation. Is that typical for ovarian cancer treatment? UPSC doesn't present itself with symptoms until late stages, and with all 4 of us, our Gynecologic Oncologists were caught by SURPRISE with this diagnosis. UPSC is a cancer that doesn't clump up readily, and instead sneaks about microscopically, and without very aggressive treatment, reocurrance quickly follows. CT-scans don't pick up a lot of the mischief of this cancer, and CA-125s are our main (abeit imperfect) treatment marker.

I posted on the Ovarian Cancer Discussion Board because I thought you all could help Deanna make her decision about the Avastin clinical trial. Thank you so much for the generosity and experience shared there. I will also be talking to my Gyn Onc about adding this to my chemo. THANK YOU!

UPSC GIRLS: Please check out the thread on the Ovarian Cancer Discussion Board about Avastin.

deanna14
Posts: 733
Joined: Oct 2008

I was just wondering how everyone was feeling today. I'm doing great other than being extremely tired today. Gonna take it easy today and thinking about a nap already. I am looking forward to my short week of radiation this week, only 3 days. Next week will only be 4 days, then I am done with the external radiation. Then on the the vag cuff radiation, which I am told has less side effects thatn external radiation. It's all good so far...
I hope you are all well today. Take care of yourselves. Hugs.
Deanna

groundeffect
Posts: 651
Joined: Mar 2003

I see similarities between OVCA and UPSC cancers; both are silent for the most part, and the majority of women with the diagnosis are caught off-guard by it.

The typical treatment is a total hysterectomy, followed by six rounds of carboplatin/taxol. This is what I had, and is what is given to women with lower-staged OVCA. I was not treated for the uterine cancer I had. It is barely mentioned by my local doctor, and I seem to have to remind me it was even there! My surgery was done by a gynecologic oncologist in a hospital that is more than 100 miles from here because we don't have any local gyn/onc.

I had a vaginal ultrasound and a CT scan prior to my surgery, and neither showed the cancers. What did show were uterine fibroids, which was no surprise to me (I had some removed surgically about six years prior, and knew they could grow back). My gynecologist and I knew something had to be done, and were discussing options. The issue was forced when I had a pulmonary embolism (blood clot to the lung). My gyn recognized that could be a symptom of lower body cancer, and did a mini-biopsy and found uterine cancer. I was very fortunate to have the ovarian cancer found at such a low stage - my "two-fer" of a lifetime! There was no CA-125 test done to my knowledge until after my surgery and first chemo treatment.

Is there any emphasis on trying to reduce estrogen in your line of treatments? I've been taking tamoxifen to suppress it, and it's apparently working to keep what may be recurrent ovarian cancer at bay for me, and it's been prescribed to two other women I know with ovarian cancer. I know endometrial uterine cancer is typically encouraged by excessive estrogen.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I believe that reducing estrogen production is a strategy for this type of uterine cancer, and I will certainly bring up the tamoxifen idea at my next gyn-onc appointment (scheduled during my next chemo December 8th.) Thank you for that idea! If my CA-125 doesn't drop after a couple of rounds of chemo, I imagine that we will want to add something else to the paclitaxel/carboplatin 'cocktail.'

You didn't have to have external pelvic and internal vaginal cuff radiation? After my 6 rounds of chemo, radiation is next. Sometimes they do the radiation first for UPSC, followed by the chemo. It's a long treatment regime with the surgery thrown in. You've been so helpful. Please know how grateful we are for your ideas. It honestly seems like the gyn-oncs are making this up for us as we go. There is really no 'gold standard' of treatment for UPSC yet.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I woke up at 3AM and my first thought was "My FEET don't hurt!". (I am such a fanatic HYDRATOR since I started chemo that I always have to get up to pee from my evening cups of green tea and plum juice.) It was so lovely for the pain to be gone, and it has largely stayed away all day. The 3 outside toes on my right foot had been throbbing enough yesterday that I called the doctor to see what I could take. (NOT Aleve, NOT Ibupropen, NOT aspirin: only Tylenol unless I need something stronger.) I also didn't take any nausea pills today and feel fine. I will admit that when I went grocery chopping just now, there was an overwhelming smell of MOLD by the freezer case that my husand couldn't smell at all, and I think that heightened sense of smell is treatment-related.

I decided to let the rest of my family make most of Thanksgiving dinner this year, with plans to still try and make a few of my signature dishes if I am up to it. So I got everything to make crescent rolls with the grandkids tomorrow, thinking we could freeze them for Thanksgiving. And I got everything to make pumpkin pies on Wednesday and broccoli souffle Thursday. We're all going to eat at my son's, buffet style. Frozen turkeys were so cheap that I picked one up anyway and may make it one day later this month when I am feeling especially good. I will so miss having the tons of Thanksgiving left-overs at my house! I love to freeze sliced baked turkey in small batches to use for stir-frys and quick casseroles.

Life on chemo is so much more normal than I'd dared to hope. I do need a nap now, after my shopping excursion, but all in all, I am happy today. Hope this post finds you all of similar mind-set and contentment! HUGS.

deanna14
Posts: 733
Joined: Oct 2008

I hope today finds you all feeling well. I am looking forward to a short week of radiation(3 days), Thanksgiving and my wedding on Saturday! And of course after today only 6 more ext. rad. txs.

Linda, I am glad that you decided to let your family help with Thanksgiving preparations. I do so hope that you are feeling well and enjoy your holiday.

Marge, how was your secret mission with your hubby? I hope you had a great time. How are you feeling.

Peggy, hope all is well with you. Enjoy the holiday and STAY healthy.

Everyone was pretty quiet this weekend, I hope that means that everyone was too busy enjoying themselves to post. Some friends had a suprise wedding shower for me yesterday. It was a great time. I got to see a lot of friends that I haven't seen since I'm not working. I also got a lot of beautiful gifts (nighties), smell goods, candles, books and chocolate!

Have a healthy, happy week... Love you all and thank you always for being here!

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Deanna, I'm glad you catch a little break this week and I know your wedding is going to be wonderful on Saturday. I was married 29 years ago today in NJ. The weather was amazing, the temp was 75 degrees that day.

Saturday was a crying day for me. I felt very, very angry. Not sure exactly why, first time I've done that since I found out I had cancer. But my body feels great, I have loads of energy I have not felt in a long time. Yesteday I felt like skipping. What an emotional ride!

My Mom is at my house and yesterday I made her cut off the bulk of my hair so when it starts falling out there won't be so much. We laughed about it.

Have a safe and wonderful holiday, I'm happy that I'm not cooking this year!

Hugs to all.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Happy anniversary, Marge! If there was ever a year to appreciate the love of a good man, it's the year you get cancer. Have a wonderful day!

DEANNA: I'm so thrilled about your wedding coming up and the bridal shower sounds like such fun! Being married to your best friend is simply the best.

It was a good weekend for me, as I am feeling pretty HEALTHY now! The grandkids and I made cresent rolls yesterday and painted ornaments for their Christmas tree while the dough was rising. We packed 50 rolls away in the freezer for Thanksgiving and ate at least a dozen hot from the oven. The house smelled SOOOOOO good! I got the okay to take them out of school at noon on Wednesday (played the 'cancer card'!) so that they could make the pumpkin pies with me.

And it was really great to feel good enough to go out into the garden and pull up my scarecrow and little terracotta knomes and angels and garden doo-dads out of the snow and store them in the shed. I even went into my attic to inventory my 'Christmas pile' of gifts that I bought all year when I saw things for people; and was down in the basement to see how well I was stocked with cards and wraps and boxes. I want to "make Christmas" while I am feeling this good. I was dead tired each night, but a good tired.

Today is Day 7 since Chemo Round 1, and I was instructed that all this week my white count would be at its lowest in 1st cycle. I was advised not to wear my contact lens or go into crowds, to wash my hands constantly and use antibacterial wipes on all surfaces, to take my temperature daily and call if it rises, and to use a new toothbrush this week each month. MARGE: are you also on 'germ alert' this week? I was told 'no dippy eggs or raw cookie dough or lunchmeat or salad bars'. BUT, I can kiss my grandkids and my husband if their noses aren't running. And I've always been a clean-nik so I'm not too worried. Anything else you can think of that Marge & I should be doing this 'low white count' week of our chemo cycle?

deanna14
Posts: 733
Joined: Oct 2008

I am so glad you are both feeling well and enjoyed your weekends. Happy Anniversary, Marge! I can certainly relate to the "crying days." I have had a really great day with my mother-in-law and sister-in-law to be, and now tonite, I just feel tearful and I'm not sure why. Hormones, I suppose. My 39 year old body must be protesting to the lack of estrogen! Also, with the wedding coming up and everything seems to be going so good, it has all come together so perfectly... Sometimes I just get scared that it's gonna end too soon. Like people saying at my funeral, "she was such a beautiful bride and she was so happy." WOW. That sucked just thinking it, but typing it was worse. I guess, what I'm saying is I'm happier than I've ever been and more scared than I've ever been. I know I can't control any of this, but d***-it, I don't want to die! And quite frankly, I'm angry about this "plague" hanging over my head!!!!! I'm so thankful to have you guys to get this off my chest, cause I don't want to worry my family and I know you will understand how I'm feeling. I feel like a big weight was just lifted off of me. Thank you for listening! Don't worry, I have no intention of giving in to this and none of you are going to either. We are going to live and we are going to be stronger and appreciate every day more because of what we are going through. Thank you again.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I think a bout of tears is bound to keep happening, off and on, throughout this journey. We all give in to the justifiable melodrama of our situation...who wouldn't??? You wouldn't be human if you didn't indulge in some of that; we all do. I'm taking my grandkids out of school Wednesday at noon so that they can bake pies with me, and of course I think, "just so they can remember me and the family traditions if I'm not here next year at Thanksgiving", and then I cry a little for myself. I know I'm just wallowing a little, but I let myself do it just a little. And then I recognize it for what it is,...justifiable, allowable, and non-productive. And I close that door again, as tight as I can.

You'll dance at your 25th wedding anniversary, Deanna, and still fit in your beautiful dress! You're a SURVIVOR. The odds are something like 88% for us with the treaments we're getting. You'll be in that 88% that comes out of this clean. You will. All 4 of us are going to be in that larger group of survivors.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Happy Anniversary Marge. I wish you many many more. Deanna, you are doing so good. You have such a wonderful future. I am sorry to hear your are going through 'this part' of your emotions with such a big few days coming fast. This roller coaster ride of emotions is to be expected but maybe not easily accepted. Your poor metabolism is wondering what all this radical change is about. I too cried about the unknown... lots of anger. I felt someone had taken away all my choices. Really cried alot. Never before had I been known to cry about anything!! I lost it .... really lost it when my 9 year old was in her Christmas program, I looked down the aisle of our church and then back up at her in her program and it hit me that instead of watching her come up that aisle as a bride she would have to watch me being carried down that aisle in a box... horrible way to think. Now, I look back and appreciate each mile stone I have seen since I was given this scare. I have the mind set that I WILL see her as a bride and I will see her as a mother!! You too will get past this 'funk' you are in. Give it time. Get your strength from above and within. We are all here and we will all BE HERE!! Right Girls!??

deanna14
Posts: 733
Joined: Oct 2008

Right!

Thank you for letting me purge. I feel a lot better after spitting all of that out and some tears. This is a good thing, I'm getting it out of my system and the rest of the week I can concentrate on my wedding. I really am excited and I think after my treatment on Wednesday I am erasing the word cancer from my vocabulary until next Monday's treatment. That's what I'm going to do... take a cancer vacation for 4 days and enjoy the holiday and my wedding. Thank you again for your kind words and encouragement. WE ARE going to get through this!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Isn't reducing estrogen production a strategy for this type of uterine cancer? I'm planning on bringing up the tamoxifen idea at my next gyn-onc appointment (scheduled during my next chemo December 8th.) If my CA-125 doesn't drop after a couple of rounds of chemo, I imagine that we will want to add something else to the paclitaxel/carboplatin 'cocktail.' Of course, I am praying that it DOES drop each time, verifying that any remaining cancer is being killed by my chemo. Just wanted to throw that tamoxifen idea out to you others as an idea to discuss as a back-up strategy.

deanna14
Posts: 733
Joined: Oct 2008

Hi girls. I just wanted to wish you all a Happy Thanksgiving.

When you get a chance check out the post from hscvt, titled "Scared-looking for advice." She is 35 and pretty worried. She has been having some suspicious symptoms and has had 2 ultrasounds with thickened endometrial lining. I posted back to her, but it probably just scared her more. She has a lot of the same symptoms I had. Anyway, if you guys get a chance she could probably benefit from other insights.

Have a great holiday!

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Wishing all a Happy Happy Thanksgiving...

Woke up today to find that my hair is starting to fall out, but I'm thankful for finding all of you and the sun is shining and life is good.

Hugs

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

DEANNA: Congratulations! I'm guessing that you had a beautiful wedding, but you will have to post the photos somewhere and let us all know where we can see them! I'm sooooo happy for you!

MARGE: After I washed my face this morning, I went to tug into place the hair I always tuck behind my ears, only to have about 20 hairs come loose in my hand! So my hair is starting to come out too! I gently raked through it with a wide-toothed 'afro pick' so as to put as little stress on it as possible and maybe eek out another couple of days. We'll see. How are you making out in the hair department? I ordered a baseball cap that says "Does this hat make my head look bald?" that I plan to wear for my first bald chemo.

PEGGY (anyone!): I was so concerned that I would be bald before my 'physical restrictions' were lifted that I just ignored the 2-month 'sexual time out' and went for it today after my Thanksgiving guests all headed out for home. (December 10th would be 2 months since my hysterectomy.) It was such fun and I don't regret it a bit, although I did have a little bit of blood on my tissues afterward. Do I have to confess this indiscretion to my doctor? It didn't hurt (NOT AT ALL! HA!), but I know I was supposed to wait for my surgeon's okay. I just didn't want to be bald for the 'first reunion' with my husband, and know I just have a couple days before I start losing my hair in earnest. We used a condom and Astroglide and took it easy. Please tell me this wasn't a serious no-no, and that the little bit of pink tissues is no big deal. I feel fine. (blush: better than fine! HA!)

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Linda, My hair started coming out in hand fulls on Saturday and yesterday. It's very, very thin and my head itches like crazy. I'm ready to take hair clippers and shave the rest off! I glad to hear you had some fun!!!! I'm waiting for my time. Go for Chemo again on Friday but see the doctor first. See what she has to say cause my six weeks of healing is Thursday.

Deanna, Congratulations and may God Bless you with many, many, happy years of marriage.

deanna14
Posts: 733
Joined: Oct 2008

The wedding was amazing! We really had a lot of fun and I am so happy.

Linda, I'm glad you decided to go ahead with the sex thing. I think 8 weeks is pretty safe. We, on the other hand waited until this weekend (it has been 10 weeks), and it was uncomfortable. When I asked the nurse about it today, she said that was actually a sign that my body is already starting to heal from the radiation. The radiation can cause strictures. She said as long as there was no bleeding. Some women have to use dilators after radiation. I would prefer the natural method for dilation!

Thursday will be my last external treatment, then I will have 3 internals, weekly starting next Wednesday.

Marge, I hope all goes well with your chemo on Friday. I've heard that your head really itches when the hair starts coming out. I hope for you the itching lets up soon.

Take care all, you are in my thoughts and prayers always,
Deanna

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm so glad that the wedding was all that you wanted it to be, Deanna! And so glad that your external radiation is just about over. Going there day after day never lets you forget that you have cancer. With the long breaks between the chemo treatments, there are actually times when you can forget for a little bit. Very restful.

My head feels SORE. I washed it soooo gently tonight and am trying to hardly touch my head, hoping to get a few more days before it starts coming out in clumps. Right now I'm just shedding if I scratch my head, but I know this it's gonna start coming out BIG TIME by next Monday when I have my 2nd chemo treatment. I'm trying to not let it bother me. I'm pretty vain, but I'm trying not to be.

Do any of you know anything about the lymph nodes that run down the inside of your thighs? I have some tender spots down the inside of my thighs that have me a tiny bit concerned. I wouldn't connect this at all with the cancer if the radiologist hadn't examined my legs with such care when I saw him, something I didn't think to ask why. Anyone know anything about these lymph nodes? I was going to wait until next Monday's chemo to ask my oncologist, but if anyone knows of any connection at all, I won't wait and will give him a call. Thanks!

deanna14
Posts: 733
Joined: Oct 2008

Linda,
I don't know if this helps, but I had/have some pain and tenderness in my right groin and thigh. I asked the doctor and his explanation was that the lymph system runs closely with the nerve pathway. Therefore, there was probably irritation to the nerves. He said it would heal in time. I have only had problems on the right sometime causing a strange sensation down into my thigh, almost as if part of the leg has gone to sleep (pins and needles). Doc told me that it is normal and he's had that complaint many times. He said it would heal in time, and mine does seem to be bothering me less frequently with less intensity.

I'm sorry about your hair. Are you having the itching also? If you go to a website called heavenlyhats.com, you can give them your name and address, and they will send you a box of hats... free. I got one, there are a couple of really cute ones.

Well, my friend, I'm off to bed. Take care, talk to you soon.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Happy MRS. to you Deanna. Congrats to you and your husband. Well Linda; Glad to see you are getting your normal life back and enjoying your relationship again. Your symptoms sound very normal to me. Your 'color' after your first time will probably be expected each time now. .... Especially after the brachy. You also said your head was sore, I remember mine feeling like I had a layer of crushed glass between my skin and my scalp. I had to use a donut pillow for a few days to sleep, but it went away. I had a nice soft cap to sleep in because my head got cold!! Also the lymp pain is still with me. Not nearly like it was just after my first hospital stay. Marge, you are still hanging tough. Hope your itching stops. This step of hair loss is not easy. We all want to think/act like it is nothing,,,, but for a day or so it may get very emotional for you and your husbands. I know I was angry that cancer had one more thing to control in my life. But soon hats and wigs are more fun than doing hair each day. Now when I have to do my hair each day I actually miss the convenience!! I am so glad all of you are here together for support. Have you noticed how different we all are/were and how much more the same we are now!?

deanna14
Posts: 733
Joined: Oct 2008

I am (we are, I'm sure), so glad to have you here for support and guidance. It's so comforting to be able to hear that the things we are experiencing are expected. Also, that we do get normal life back (with some "metals") after treatment. Have any of you checked out cancercare.org? They have a lot of helpful information and offer free counseling and even online support groups. I am in the process of joining an online support group. They do screening prior to signing you up, I guess to make sure you are legit and maybe that they don't think you need more personal support.

Peggy, I have a few question about the brachy. Is there a lot of discharge after these treatments? I have to douche for 3 days after each treatment? Then twice weekly until my first follow up visit with the radiation onc. Do you remember, is sex okay during these treatments. I hate being restricted... one of those cancer controlling my life things!

Anyway, I want you all to know how much I appreciate having you to share with and bounce things off of. It has help reduce my anxiety about every little symptom so much. Thanks for being here.

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pjba11
Posts: 192
Joined: Nov 2008

I hope I can answer your questions about what I experienced with bachy. I did not have to douche. I did not have discharge. Through out all of my treatments I had sex when we wanted to. I had a mind set that I would be as normal as I could for what ever time we had left. When I went for my brachy simulation they had told me that I would have a marker in my vagina, and a enema of barium to better see the areas around all of my intestines and bladder. When they actually did the simulation they did not do either of these because they could see everything they needed to go around on the x rays. I never had to have any internal exams from any of my radiologists. Only my gynocologist. My brachy was interesting. My first time on the table just as the machine started to pump one of the techs came back into my room and said that they had just taken my husband from the waiting room and took him to emergency because they thought that he had had a stroke. I had to lay there listening to this machine pump this poison into me while my husband was going through this!! As soon as I was dressed I flew downstairs and found him sitting in bed drinking juice. It was not more than a bad virus that caused him to get dizzy and sick. Thank God!! As if this was not enough... the second time that I am on this same table for my 2nd brachy the tech comes in and asks me to call my daughter (9) at school (165 miles away at home) the tech went to my purse to get my cell phone... my little girl says 'mom, I think my arm is broke. I fell on the sidewalk by the school at recess. Can I get an x ray?' So I call my friend who I had asked to be in charge of my daughter to take her to the hosp. Next call from my daughter. "how is your arm." she said "the cast is blue" She had 4 casts total before we got through that fall!! On my third trip to brachy which is 165 miles from home I started to throw up about 20 minutes from the hospital. I had a terrible flu. Since I very very seldom get sick this was horrible!! So Deanna I hope you have better luck than I did!! The procedure itself is nothing to worry about. I felt pressure and pinching, mostly because I was so sore from the earlier radiation sessions. They will also give you dialators for later if you need them. We have the rest of our lives to deal with the damage. I felt that the chemo was a breeze compared to the after effects of radiation. But once again. We are all different. My life is good and I thank God many times a day for the privledge of my treatments!! You are much younger than I am and more than likely you will be able to bounce back a lot quicker. Nothing about my brachy was painful. Do not even give it a second thought. Just go get done and come home healthy!!!

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I went last week and saw the Radiation Oncology Dr. He actually recommends that you have sex at LEAST once a week. I waiting to hear from them but believe my first appointment will be next week.

Dianna I'm sooooooooo happy for you. CONGRATS!!!!

And Peggy, WOW...

My hair is almost gone, think in about 2 days I will be completely bald. I put baby oil on my head this morning to help stop the itching and it is a little painful to touch.

deanna14
Posts: 733
Joined: Oct 2008

Peggy,
Thank you so much for sharing your experience with brachy. I think the reason we were restricted in the beginning was because the top of my vagina was not completely healed. The fear was that if we had sex the defect would become larger. Also that there was a chance of infection, which in turn would delay treatment. They were also worried that the radiation would further delay the healing of the vagina. Fortunately, it is healed, and has been for several weeks.
Anyway, you have helped alleviate some of my anxiety and I thank you. I'm going to try to stop worrying so much! Thanks again.

Marge,
Thank you. I am really happy to be married to my best friend! My husband was happy when I told him that I read somewhere that sex was recommended 1-3 times per week, lol. I am so sorry that you are uncomfortable, I hope it passes soon. Hang in there, friend.

Linda,
I hope you are still hanging tough.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

(This is supposed to be a reply to the new poster to this thread, but somehow it ended up at the bottom of the whole thing and she may never see it! What am I doing wrong? I will try and cut and paste it in again under her post, and apologize in advance if I get it in twice.) I am so sorry that you have had such a bad experience with your pelvic radiation....especially since it sounds like they gave you no direction as to how to best resume your sex life. How can doctors think this may not be important to you??! My surgeon called me in mid-November and suggested that I give him a call for an appointment "after you finish your chemo in March". When I said, "your instructions say that I am not to have intercourse until you examine me and give me the okay", he said "Oh,... okay, you can call for an appointment in early December". He would have just let me wait another 3 months when I had already waited 7 weeks because of my hysterectomy! I may be 55, but I'm not DEAD! HA! As it turns out, we didn't make it until the beginning of December anyway! But at least I have Deanna, Peggy, & Marge to get advice from here. Between the snippets we get from our various oncologists, we stay pretty well informed. I will be having pelvic radiation and internal bracy radiation after my chemo, and NO ONE at my oncologists have mentioned dilators or sex at all. But you can ask and get answers for almost anything on this message board. I fear the sexual side effects of the radiation more than I do anything from the chemo. Please join us here in this thread. We'll be there for you. HUGS.

deanna14
Posts: 733
Joined: Oct 2008

While we are on the subject, I think the sooner the better. It has been a little uncomfortable for me, but it had been 10 weeks since surgery. I had also had 4 weeks of external radiation. I agree with you, the doctors act like it's not important, when it IS so very important. I thank God that I found you all on this site, I would probably still be waiting if it weren't for talking with all of you. I am learning the true meaning of being your own advocate with the doctors.
Anyway, how are you doing? I hope you are feeling well. Take care, stay strong!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

If my hair wasn't falling out, I could almost forget I have cancer; I feel that good. My step-mother drove up to see me today and brought some great take-out Thai food from her favorite restaurant. After she left, I accepted an appointment tomorrow for lunch with a state official from the PA Dept. of Conservation & Natural Resources, to talk about a grant for one of my clients. (Let's hope he doesn't get too much of my drifting hairs in his food! HA!) Then I picked up my grandkids and took them to McDonald's and then let them play at my house awhile to give their parents a break. Then I put in a couple hours of computer work catching up with my staff. Deanna, the week before chemo is GREAT because your body has fully recovered from the last treatment by then. I think you'll like chemo a lot more than the radiation. But you don't make the radiation seem that scary either, and I thank you SO much for that! The grandkids helped me put my (artificial) Christmas tree up, and I've done all of my Christmas shopping already online, so I'm feeling unusually content. Who knew cancer could be like this?? I know there could be some bad days ahead, but don't you agree that this cancer thing is really do-able? Compared to how you imagined it would be when you got your diagnosis??

deanna14
Posts: 733
Joined: Oct 2008

It really is do-able. You hear all of this horror stories and see horror stories in the movies and on TV. It is not what I imagined it would be, and yet it has made me appreciate life so much more! Radiation really isn't that bad. I have to watch what I eat, and I get tired easily, but it is so do-able. I planned a wedding and got married while taking radiation treatments!
How are your grandchildren dealing with your hair falling out. We have a 3 year old granddaughter and I wonder how she will react to my bald head? Have you talked to them about the cancer and the treatment? Hannah did really well with the surgery and being careful about the "owie" on grandma's tummy. I'm just not sure how to explain cancer, chemo and hair loss to a 3 year old.
I am happy that you are feeling well. We are all getting through this, and thank God we have each other :) !!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My grandkids are 6 and 7, and they overheard a lot of adult worried conversations and were warned not to jump on me, or cough on me, after my surgery. Initially the interruption in our usual daily close relationship and schedule was really a little scary for them. They are just old enough to know that cancer is a scary thing. At the very first, when I got out of the hospital, they shyed away from me. As soon as I was able I had them sleep over, and snuggled under the covers with them, I did my best to answer all of their questions. ("Are you trying not to die, Grammy?" Will you be able to see me from heaven?" "Did the devil give you cancer?" "Do little boys get cancer?" "Will my mommy get cancer?") I showed them my surgery staples, and later my scar. They both tried on my wig when I got it and all of my hats. Yesterday I let each of them gently pull my hair and come away with a little handful, and they joined me when I laughed. I think little kids follow your lead. If you can be lighthearted about it, so can they. Emily did ask me NOT to come to her school with my "Does-this-hat-make-my-head-look-bald?" baseball cap on; she wants me to wear the wig when I pick her up there. Now they both seem to spend more time snuggled up against me when they come over, comforting me and letting me comfort them. We have almost fallen back into our regular schedule of weekly sleep-overs and daily visits. My grandson and son both wear their hair "high and tight", military-short and are both very very blond, so Jakey always says "I am bald, too." I really think they will be okay about my bald head once they get used to it. Last night I slept with my 'sleeping hat' on so I wouldn't wake up to a hairy pillow. If I don't touch my head, my hair seems to hang on, so I think I can get through my appointment with the state official with no wig this afternoon (although I may wear a hat just to keep hair out of everyone's food! and also to get used to wearing a hat in public.) Then tomorrow I plan to go and get my hair cut off to about 1/2" all over, so it's not itchy under hats and the hairs falling out will be smaller. It is amazing that Marge started her chemo 3 days before me and is exactly 3 days ahead of me in losing her hair! What a blessing you all are to me! It's so good to know what to expect and to have others to hold hands with on this journey.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I am so glad that I had my mom cut my hair. Wow, I didn't realize I has so much, even short. It's almost all gone now. Yesterday it was sore and I put baby oil on it. It felt so much better. This morning instead of washing what hair I had left with shampoo I used my body soap and it doesn't itch today. I was making jokes to my husband last night that I didn't have my comb over hair anymore. My daughter is really freaked out over it. I think seeing me with little hair puts the whole cancer thing in reality for her. She wants me to cover my head around the house but I keep telling her this just part of the battle to win the war!

My son is in the Army so he to cuts both my grandsons with high and tights, they are only 3 and 1. To cute! I wish I lived close to them so we can have sleep overs, I miss them dearly but they are my inspiration to beat this.

I start Radiation next week and will be done with it on 12/15. I look forward to March to be done with all of this!

Linda, do you have a bigger appetite now? I can wake up in the middle of the night and eat a bowl of cereal and go back to sleep. Crazy!

Hugs to all

wje630
Posts: 14
Joined: Nov 2008

Hi Everyone:

Thanks for making me feel welcome here. I feel sort of bad, relating my problem when all of you have experienced so much worse.

I had already had a hysterectomy back in 1995, so that part of this journey was behind me.

My family has a history of cancer, all different kinds so I guess I shouldn't have been surprised when I was diagnosed. In fact, I used to tell people I was the only one left of my siblings who had not had any kind of cancer...I AM grateful that mine was at the Stage II when they discovered it. It may sound petty, but I was so embarrassed to even tell anyone what kind of cancer it was. I tried to make jokes about it to my kids, like " I always knew I was a pain in the butt, but this is not what I meant!"

All of you ladies, are so brave...and I think you should be applauded for being willing to share your experiences with others here. And your sense of humor is so uplifting...I do know that laughter is the best medicine. Yes, there are plenty of times when all you want to do is cry, but then afterwards you feel cleansed and then you go on with your life.

Like I said in my first post, if I had to do it over again, I would have tried even through the pain to continue my sex life, then maybe I wouldn't have ended up with this problem. When I brought it up to my onocologist, he was surprised because I didn't have the internal radiation, but believe me, by the time I was healed enough to have sex, it was very difficult. It felt like there was a wall that my guy would hit and could go no further. After my surgery to remove the scar tissue it was better, but the opening of my vagina had shrunk so much is was very painful...we used lots of lubrication but it didn't help that much. Only recently did I decide to try the dilators. I figured I had nothing to lose...
These problems have made a difference in my relationship. There doesn't seem to be the connection we once had. Maybe my doctors thought because of my age (63 at that time) it wouldn't be a problem for me. My fiance is 5 years younger than me and he is still a very virle man. My radiology onocologist did suggest to me also to have sex 3 times a week, but for quite a long period, I was too sore to even think about it and by the time I did feel better it was too late.

So...you ladies keep up with your sex life as best you can...your mates will appreciate it later.

I may be an older women, but like Linda said, I am not dead!

I will keep checking this forum for updates on all of you brave women...it does help to be able to share with others who can empathize with you. I pray that all of you will do well with your treatments and by the time 2009 rolls around, you will be better.

Thanks again for letting me share with you.

Linda: I am also a grandmother...6 times from 27 years down to 9. My two youngest granddaughters spend time with me and have been a great joy for me during my bad times.
They always seem to be able to put a smile on my face...children are so pure and honest...if we could only be that way as adults.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I think I will talk to my chemo oncologist about starting my radiation concurrent with my chemo like Marge is getting. My last chemo round is in early March, and then they were talking about a 1 month break before starting radiation. 5 weeks of external & 3 weeks of internal radiation takes me out until late June before I am out of treatment. That seems SOOOO long!

I have an appointment at 2:30 tomorrow to have my hair all taken down to 1/2" all over. I was going to have it 'buzzed' but the book I got suggested that it might be 'bristly' on my sore head under hats or a wig if it is so short that it sticks up instead of laying down under the hat. The way it's coming out today, there may not be anything left to cut by this time tomorrow! It look like there's a dead hampster or chipmunk in my garbage can, with my hair rolled up in there. My husband is out shooting pool this afternoon and will be shocked that I have been gently yanking out my hair all afternoon, rather than let it keep drifting down over my keyboard one strand at a time. My head feels like I have a massive sunburn. I will try Marge's baby oil and body wash ideas after I get it cut off tomorrow. Thanks!

Marge: I am hungry all the time, worse right after the chemo, but I have a really good appetite. I just cane from a business lunch, and because I am trying to eat the "5 fruits & vegetables daily" recommended by the nutritionist, I had tomato juice and a grilled chicken salad. But I could just have easily eaten the chicken-and-waffles-and-mashed-potatoes special and not been too full! I have no trouble keeping my weight up! HA!

deanna14
Posts: 733
Joined: Oct 2008

I talked to my onc. about doing both to get the treatment done sooner. He said that some doctor's do prescribe the treatment that way. My doctor said in his experience, patients are more successful at completing treatments if they are not done concurrently. So maybe it is a doctor preference, they might let you try if you wanted to.

Tomorrow I graduate from external radiation! I got a purple bracelet that says "Celebrate Hope" for a graduation present from the nurses at the radiation center today. I will start internal treatments on Wednesday and finish on Christmas Eve. I had 25 total external treatments. Then I will have 5 weeks off prior to starting chemotherapy. It will be July before I finish my treatments.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Linda, You may want to review my post on Nov 10 (I think) this is what my clinical trial was based on and this is what most of the articles are saying may have doubled our survival rate. First they 'rated' the staging of the surgery then they 'sandwiched' the chemo and radiation with the brachy sessions last. I felt my treatment was very aggressive and at the time emotionally that is what kept me in the fight. I am still NED!! I am sure that many oncologists write there own treatments and they may be fine. None of my Doctors wanted to be as aggressive as this trial, but I insisted. So far I feel I have won!!!

deanna14
Posts: 733
Joined: Oct 2008

Peggy,
Where do you get the supplements that you take?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Peggy: I re-read your treatment schedule again, and will bring that 'sandwiching' idea up again with my chemo oncologist on Monday also. Who can argue with proven success, right? My radiation oncologist was pretty adament that my chemo come first, as he says he sees bone marrow compromised by the radiation to a degree that many women cannot complete their complete prescribed chemo rounds because their white counts get too low to continue. And the chemo oncologist and surgeon both have said that it doesn't matter what you do first as long as you do both. I wish our cancer had a 'gold standard' of treatment that was universally subscribed because it worked all the time. I just want it to be adequately aggressive so that it's effective.

I took a photo of myself today in a hat, thinking I should put a more up-to-date photo of myself here. The photo I am currently using is what I have on my business cards and website, and I just now realized it is at least 4 years old. When I compare the new photo I just took to the old one posted here, I can see that I've aged in the past 4+ years. (HECK! I've aged in the 4+ MONTHS since this cancer thing started!!) I think I'll wait until I'm completely bald (couple of days) and take a new photo, and then see if I have the nerve to post it. For now I will let you all be deluded as to how young I look for 55! HA!

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