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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.

deanna14
Posts: 733
Joined: Oct 2008

I was getting worried about you, girl! I hope that each day gets better for you now that the internal radiation is over. I don't know how you have done both at once. The radiation onc. told me that the side effects of internal radiation were less than external radiation. I'm not sure I agree with that, or maybe it is the cumulative effect of the radiation. I have been feeling like I was run over for the last couple of days and I haven't had a treatment since Thursday.
Congrats on finishing that stage of treatment! That's a milestone in my opinion. I have internal tx. #2 on Wednesday and the final one next Tuesday and I will be completely finished with radiation. Yippee! I pray that your liver tests are back to normal!
Peggy and Linda, I hear you... I will call the doctor's office tomorrow, first thing. I'm not sure which one to call for sure, radiation onc. or gyn. onc? I guess I will start with the rad./onc. since he is the one actually giving me treatments right now.
We are supposed to get a couple inches of snow tonight... I'm so excited, I hope it snows a lot! Most winters I don't want it to snow, since I have to get up and drive to work. Since I get to stay home and look out the window at it, I'm excited.
It's beginning to look a lot like Christmas....
Love you girls. Hang tough.
Ditto Marge... Mind, Body and Soul, cancer's butt is ours!

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

All my life I have kept diaries and journals during stressful times in my life. Does anyone keep a journal to capture how you are feeling throughout this whole experinence? That was recommended from so many people before I had my surgery, that I did start recording everything I was thinking and feeling in a journal,...initially. And, because I have always taken 20 to 50 photos a week ever since my granchildren were born, I took photos of my big scar and bald head as another way to chronicle this whole journey. Just for me, a therapeutic exercise.

So, I was wondering if any of you are journaling also. And I need to confess something and get your reaction. I found that once I started posting here almost daily, I have no motivation to record anything in my journal, as my journey is recorded here. My confession is that, a couple weeks ago, I cut-and-pasted this whole thread into a Word document that I keep in the 'Personal' file of my home computer. I thought initially I'd use it as a reference so that I could 'catch up' in my journal. About once a week I cut-and-paste the new posts and add them to the bottom of this very lengthy saved document.

Do any of you feel your privacy is violated in any way by that? If so, I can delete it. (I guess I figured we've already opened up our stories to the internet, but if it makes any of you feel wierd to have your posts stored also in my computer, please tell me.) It just takes the place of my Journal, recording for me this critical time in my life in a much more vibrant way than my own scribblings ever could by themselves. I'd be happy to email you the document for your own files. It's fun because the older profile photos are on it, and then they change as I paste in the new stuff. Maybe when we are all out of treatment and NED, we can negotiate with the webmaster here and publish our stories in a book and all get rich (share and share alike!) and help others with cancer to keep the faith!

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

If you think this part of my life is interesting.......? You are welcome to share all of my sad tales. I do not feel threatened in the least. Hope you are feeling good.

deanna14
Posts: 733
Joined: Oct 2008

It does not bother me at all. If you get rich remember your new friends! I'd have to pay medical bills with it anyway... haha. I'm glad you are posting more Linda, it must mean that you are feeling good. I sure am hoping that Marge gets to feeling better soon.

deanna14
Posts: 733
Joined: Oct 2008

I just found this post on the "long term side effects of treatment board." I thought it was pretty educational, just thought I would share. Many of the posts talk about equal amounts of B vitamins to combat neuropathy.

Neuropathy is a problem that sometimes occurs with chemotherapy treatment. It's not all that rare, especially frequent in patients older than 65 years of age. It is damage to the nerves. It can occur from some chemotherapy drugs used in conventional cancer treatment.

There are three major groups of nerves in the human body, the peripheral nerves that carry information to and from the limbs, the nerves that supply the bowels and other internal organs, and the nerves of the head which connect to the ears, eyes, taste buds, etc. Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves. Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids(vincristine, vindesine and vinblastine), platinum drugs(cisplatinum, carboplatinum) and the taxanes(taxol, taxotere). These drugs have the potential of interfering with nerve function.

You may notice symptoms in different areas of your body depending on which groups of nerves are affected. Symptoms in the hands and feet happen when peripheral nerve damage happens and are not rare with vinca alkaloids. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position. If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed. Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful. Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

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

Linda, doesn't bother me a bit to record your journey. My daughter and I are doing it through pictures.

Deanna, the Oncol nurses ask alot of questions before your chemo treatment and one is if you having tingling in your hands or feet. They also ask if you have ringing in your ears and if you have a hard time buttoning buttons. The bottom of my feet feel a little prickly this time.

I'm feeling much better today, don't feel so beat up.

Hope all is well with you. Hugs!

FLY EAGLES FLY!!!!

sisikoff
Posts: 1
Joined: Dec 2008

Hi, ladies, just want to offer my support and encouragement...I was diagnosed with pap serous ca 5 and a half years ago. Had only chemotherapy (there was some dispute about the staging, but no lymph nodes were positive) and had huge problems with side effects...but I am still here and still cancer free. So yes, it is a bad and aggressive cancer, and yes we can be cured! The only problem was I had a lot of leftover neuropathy from the taxol and cisplatin, both autonomic and peripheral, with bad loss of balance and foot and hand pain. And up until 4 weeks ago I still had all the symptoms. Figured they were there for life. My balance was so bad a police officer once came over to see if I was drunk. But four weeks ago I put myself on alpha lipoic acid, and darned if it did not work! I can now close my eyes and not immediately fall over. And the pain is down ninety percent. Placebo? Maybe. But they are studying the stuff at NIH for chemotherapy neuropathy. And it is used in Europe for diabetic neuropathy. So...whatever works. Anyway, hang in there, all, the journey is hard but worth the effort.

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

Deanna: That's a pretty scary description of neuropathy as a side effect to chemo, but I think the overriding message in the information is that EARLY disclosure of any neuropathy symptoms is tremendously important. When you are in chemo, they assign an oncology nurse to you to call whenever you have the tiniest worry or symptom. They give you an 'Oncologist On Call" number for nights and weekends, so that you have someone you can reach 24/7. And you'll have lots of opportunity to share EVERYthing before each round of chemo.

The way my chemo days go; first I'm called in to have my blood drawn by the phlebotimist and then sent back to the community Waiting Room. Next they call me in for vitals, and the oncology nurse quizzes me on any new or progressing side effects while she weighs me and takes my blood pressure. I volunteer every little worry or twinge I had in the past 3 weeks. She types everything I say into the computer. I go back to the waiting room until they call me to talk with my chemo oncologist. He goes over my labs and vitals with me and answers all the questions I have collected since I saw him last, and he makes the decision about the day's chemo based on all the new stuff in the computer in my file. They will adjust your chemo cocktail if they need to react to any side effects. After another short stint in the waiting room, you're called in for your chemo. My chemo drip takes 3 1/2 hours, so all told, I am there for 6 hours. I'm sure that you will make some great friends during chemo, as everyone has hours to kill and you are all together, and everyone shares their stories and worries. Many of the people will be on the same schedule as you are and you'll see them in the waiting room and can 'save a seat' for a chemo buddy to get their drip beside you. It's not really that bad. Nothing I'd want to go through over and over, but nothing I would be afraid to go through more than once if I needed to.

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

Looks like you two are adapting quite well. If you have a cap/hat that you like I found that if I put a bandana under it I had a bit of filler similiar to hair. It was a lot more comfortable. You can let as much of the bandana show as you want to or hide it all. We had lined a few with thicker batting and I really likes them also. Gave a bit of body to all of the different ways you can wrap them. I got a lot of compliments. I had to stop and think about my chimo Linda. I had my ca125 and blood work done the day before chemo then the results faxed to my Dr because I had to drive 100 miles one way for my sessions. When I got there I saw my Dr. then by 9:00 I had my IV running. They always wanted to hurry to get my IVs running because my sessions went all day until many times I had to still be there for second shift and it was dark outside when I left the clinic. We had recliners or a hospital bed depending on which room you were assigned. I never got to meet new friends. I brought my own. We always played cards etc. Many nights we shopped at the mall after chemo until it closed. Then we had the drive home. The next day within 24 hours I had to go to a local facility for my neulasta shot in my stomach and then I was down for a few days. The chemo was fine, but the neulasta always hit me hard. I am still emailing and in touch with one of my chemo nurses. Another thing you may want to do if you have to do 3 month scans like I do. I go to infusion and have my IV set put in, then they draw my blood from that, put a bandage over it and send me to the next place for my scan. This way you only have one stick and your veins last longer. I had blood clots so they started doing this 2 years ago. I am not going to ask them to change it either!! Deanna that information is so good. I have a friend (breast cancer) who had many many bad days with just one toe bothering her until she could have chopped it off!! It did get better fast, which was good. Hope Marge is hearing good news on her blood work. Linda, thank you for this great Christmas surprise. What a great idea. I often wonder why all of you special women have to go through this too. Thoughts and prayers!!!

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

I am having issues enough to warrent a 3 month scan. Does anyone know with our rare cancer how often we should have a pet/cat scan vs a cat scan? I have reviewed all that I can on this on many websites.. only to more confused. Have your Doctors recommended anything to you? Thanks.

deanna14
Posts: 733
Joined: Oct 2008

I know how worried you must be. My doctor and I discussed that after the completion of treatment that we would follow up with blood tests and CT scans. He never mentioned the pet scan and never the frequency of follow up scans.
Know that I will be praying for you. When do you have to have the scan, or did you already have it?

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

I missed this whole conversation, but my husband said that he asked my chemo oncologist why they hadn't done any PET scans on me yet, and was told that PET Scans weren't approved (FDA approval???) for our cancer. Then Vic asked if I could have one if we paid for it, and he just said "You don't want to pay for one of THOSE!" I was under the impression that I would be monitored every 3 months for the next 5 years with CA-125s and CT-scans, but I don't know that for sure. Are you worried, Peggy? Try not to worry. You are a survivor, NED!!

Guess how much each round of my chemo was billed at: almost $16,000! Are they putting ground diamonds into my veins?? That's crazy-expensive! My insurance hasn't caught up yet with that paperwork so I'll be holding my breath to see how much they pay and if the hospital will accept it as total. My CT-scan was billed at $10,000. (yikes!) I am currently fighting with the insurance because the hospital coded my hysterectomy as 1 code and my lymph node staging as another code. They paid the hysterectomy and seem to think the additional $4,000 staging invoice is duplication of what they already agreed to pay for my surgery. ARGH! I hope it's just a coding error technicality and I don't get stuck for something clearly warranted. My strategy is to simply not pay and let the hospital fight the insurance for the money. We'll see how that goes.

I wish Marge would check in and let us know how that liver blood work went. I think I may be finally shaking that cough. At least it's not that unproductive honking kind of cough now that sounds so scary. I was missing my grandkids so much, as days go by that I don't see them now that I have been sick. I was starting to cry a little every time I thought of them (self-pity: isn't it horrible?). This afternoon, since I felt a little better, I went over and picked them up after school and we made peanut butter cookies together and we made up ELF videos of everyone in the family.

Check out this 'Elf Yourself' I made of my husband Vic and myself if you need a giggle: (just cut and paste into your brower):
http://elfyourself.jibjab.com/view/ggI9ITAU3C7omPY3

and I did one of my grandkids dancing with us:
http://elfyourself.jibjab.com/view/V57c0DT1jpTwE5BV

These are really fun to do if you're easily entertained! Simple fun for simple me! HA!

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

I was reading that the pet overtop of a cat is the best detection. The pet does the cells by attracting sugar and the cat is for the muscles and bones. My insurance has covered most of it when I had it done in Dec 06, but it was a lot more money than just a plain cat. I would think that as micro as our cancer is that we would have a earlier detection, especially in the lungs or brain? (cellular?) I did see in an article that most of the larger insurance co. are changing their policies after Jan 1 to approve the pets more readily......... I have to catch up with those elves Linda. I am glad you are having fun. Laughter will heal. Tomorrow is Jodana's Christmas program. The next day Garth is going to Wisconsin so we are busy too. Deanna thank you too for your concern. I think I am just like the rest of you scared and vulnerable, sometimes more than others. It is a bad combination losing 2 friends to cancer this close to Christmas. I often wonder who I am saddest for them or me and then I get on to living a better life than before I got cancer. NED!!! Marge we are waiting for your numbers to be good.....

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

For the last week I've had some bumps on the very back of my tongue that seem like a continuation of my sore throat, and the last couple days it looks (and feels) almost like tiny cracks all down the length of the top of my tongue. Mouth sores were listed as a common chemo side effect in the book they gave me, and their suggested remedy (holding baking soda dissolved in warm water in your mouth periodically) really seems to help. So when I started coughing a little tonight, I got up to do the mouth rinse and take some more Robitussin, and saw your post, Peggy. I hope none of you are also up in the wee hours. Usually I sleep really good. Tonight my worries about Peggy's PET and Marge's blood work add to my wakefulness. I know I should crawl back in bed and say my prayers again. But I know what Peggy is saying: our worries for others hold a shadow of worry for ourselves, for if it could happen to them it could happen to us. We can't give in to that kind of thinking! All 4 of us surviving NED without another re-occurance is what is going to make our BOOK a Best Seller! (HA!)

Anyone else have any home remedies or over-the-counter products for this sore mouth? It's not so bad that I can't eat Christmas cookies, so it's not anything serious yet. But I want to prevent it from getting ulcerated if I can. Maybe it's aggravated by all the Hall's cough drops and the gallons of cranberry juice I'm been drinking trying to sooth my cough???

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

We're snowed in here in Pennsylvania, with everything (everything!) closed due to hazardous road conditions. Sure looks Christmas-y out there! I got this in an email today from The Cancer Crusade, and wanted to share it in case you haven't see it:

"The Big 'C'"
by Kathy Cawthon, Survivor

"The big 'C'" I heard someone call it.
Another just whispered the word.
That we don't even dare to say "cancer" out loud
Gives it power it doesn't deserve.

So I'm giving that letter new meaning
And refusing to give in to fear.
I'm reclaiming the power for you and for me
By saying these words loud and clear:

Let the "c" be for "cure" and "compassion."
Let it stand for the "candles" we light.
And a "chorus" of voices shouting "You 'can'!"
To all who will take up this fight.

Let the "c" be for "cash contribution."
"Credit" or "check" will work, too!
Let it stand for "commitment" and "check- ups"
and "cheer"
And the "children" "counting" on you.

Let it mean that we know our "Creator"
Is beside us each step of the way,
And remind us to "call" on His strength and His love
And to "celebrate" every new day.

To everyone facing this "challenge,"
I say it's a fight we will win.
Tell all who will listen that, starting today,
The "c" is for "COURAGE," my friend.

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

Linda I emailed to you the last and latest information I could find on PET scans. For some reason my site is not forwarding to Deanna or Marge. Could you please forward the article to them? Notice in this article that on Jan. 10 2009 very important changes will start across the board on major insurnace coverage. It is my opinion that we should consider pushing for a PET more than a CAT.... but what do you think???? and what do our Drs. they need to rethink if the cost issue in not a factor as it had been in the past. I do know that the majority of Drs. are used to having our insurances deny their requests for PET scan because of the cost factor which is not fair to us. Our type of cancer has been reclassified to be covered (is that what you see in this article?) My Dr. says because we are so (UPSC) rare and so aggressive we are 'legally' classified under 'ovarian' have you been told this also? We have your snow here today Linda. Getting my little grandson today. How are all of you doing.. pretty quiet on the board I MISS YOUR CHAT!!

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

5 1/2 years with no re-occurrence? What a Christmas present your post is to all of us, as we have been searching for someone who has had this cancer and beat it long term! Peggy, who is a 2 year UPSC survivor, was just saying over the weekend that she wished she could find a longer-term UPSC survivor to compare notes with and use as a reference with personal experience, like the 3 of us here in treatment (Deanna, Marge, and me: Linda) are so lucky to be able to do with her. Please consider staying with us here in this thread as a regular visitor, and a member of our little "UPSC sisterhood." You would be so very welcome. Thank you so so so much for posting and for the hope that you represent to us all!

I will make note of the solution you seem to have found for your neuropathy, so I can be ready if that ends up being a problem for me. On December 29th I have my 3rd of 6 rounds of chemo, to be followed by 8 weeks of external and internal radiation. These days oncologists go after even Stage 1 UPSC aggressively with de-bunking surgery and chemo and radiation, knowing how sneaky it is and how easily it re-occurs. But you made it! And that gives me renewed hope for all of us! THANK YOU AND MERRY CHRISTMAS!

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

Here is some info that I found about how to treat mouth sores.

The best way to manage mucositis is to prevent it before it starts or to treat it early. Oral cryotherapy, which involves the sucking on ice chips just before and during each chemotherapy treatment, may reduce the occurrence of mucositis caused by certain types of chemotherapy, such as fluorouracil (5-FU) injections. For treating mucositis, local anesthetics (creams that dull pain) or analgesics (drugs that treat pain, such as aspirin) may be helpful. Other drugs to treat or prevent mucositis are currently under investigation.

It is also wise to make extra effort to take care of your mouth during cancer treatment. The following suggestions may help:
Brush your teeth gently with fluoride toothpaste.

Floss gently.

Rinse or gargle with a solution of sal****er and baking soda (1/2 teaspoon of salt plus 1/2 teaspoon of baking soda in a glass of water).

Remove dentures.

Choose foods that require little or no chewing.

Avoid acidic, spicy, salty, coarse, or dry foods.

And that is a MERRY CHRISTMAS present to meet someone who has passed the five year mark!

MIND, BODY AND SOUL

Hugs

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

I have been making the baking soda/salt mouth rinse using warm water, and try and hold it in my mouth as long as I can, and do that 4 or 5 times a day. That really does seem to help and is soothing, too. I don't have any actual sores or ulcers, just little tears on my tongue, but it does make eating anything crunchy a little painful. I also put baking soda on a soft washcloth dampened with warm water, and 'clean' my tongue gently with that, which seems to help. It only seems to flare up on my mid-chemo-round week when my white count is at its lowest, at the same time as when my hair follicles hurt. Now, during my 'upswing week' it's not really bothering me.

I went out fir a nice steak and Mudslides at Applebees with a girlfriend today and we stopped at a gift shop on the way home to look around. So I got some Christmas-ing in after all! She got me a little personal blender to make yogurt smoothies, for days when I can't bear to eat real food.

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

My son and his family surprised me last night. They drove 22 hours from Texas; I have my grandchildren and all of my family for Christmas!!!!!

Merry Christmas all!

MIND, BODY AND SOUL

Hugs

deanna14
Posts: 733
Joined: Oct 2008

Yeah Marge,
What a great gift and a wonderful way to lift your spirits! Enjoy your family and Merry Christmas!
Love and Hugs,
Deanna

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

I'm so happy that your family surprised you with this visit, Marge! Christmas is such a nostalgic and emotional time, and having everyone 'rally round' can push back all that sentimentality that has the potential to be bittersweet, because the NOW is just as fun and happy as the past. And even if this Christmas isn't the same as other years, it's JUST AS GOOD!

Tomorrow my son and my step-son both will be driving in, each about 5 hours away from here. I am hoping it won't snow or sleet for their long drives. We will have Christmas Eve at my younger son's home, and Christmas dinner at my home. Today I hit the grocery store to try and get the ingredients for an EASY Christmas dinner for my family, wearing a red and white Santa cap to hide my bald head, and a surgical mask to screen out all the germs everywhere. A little girl of about 2 spotted me, and pointed at me and shouted over and over with glee to her mother, "Santa! Santa!" (I guess my white surgical mask was close enough to a beard for this tiny tike!) I had to laugh and give her a big "HO! HO! HO!" in my lowest voice. What fun! And her laughing little face took all the sting out of my being there to buy store-bought rolls, 'steam fresh' veggies, and an ice cream cake roll, all EASY substitutes for my traditional homemade crescent rolls and broccoli souffle and Copes Corn and homemade cheescakes of 'Christmases past'. So, although I will still make my mother's traditional Corn Bread Filling to stuff my turkey and her fresh cranberry relish, the rest of my Christmas dinner menu matches my probable energy level, with so many shortcuts. And I know no one will care. It's all about being together!

deanna14
Posts: 733
Joined: Oct 2008

Here's hoping that you all had a Blessed Christmas and a fabulous time with your families. The last couple of days have been wonderful with little time to worry or think about all the "stuff." What a relief to just feel normal for a while! Merry Christmas to all and to all a good night!

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

I hope you all had a wonderful and blessed Christmas! It's wierd, but I think my cancer ENHANCED my Christmas! In this economy, were I not battling cancer, my financially-conservative husband would have cautioned that we should scale back on the Christmas shopping. But here I sit with a new blue diamond ring sparkling on my finger and an embarrassingly high pile of beautiful gifts. And ordinarily after a busy Christmas day, when I wanted to go BACK over to see the grandkids in the evening (after going over at 7AM to see them open their gifts and then having them all here for Christmas dinner), my husband would have begged off of that evening excursion and I would have gone alone. But instead, he drove me over and played the Wii games with us, singing Wii American Idol, doing Wii hoola hoops, and racing in the Wii Mario cars with the family until my sides hurt from laughing so hard. I know that was all the new appreciation for each day, and the special closeness that this cancer journey has brought my family. Funny where your blessings come from! I think often of the saying: In the darkness, you can see the stars.

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

Glad all of you had a busy and happy holiday. I hope the new year continues to bring us all hope and good news. It was so encouraging to see a long term survivor post here with us. I am so very interested in the alpha lipoic acid. If you are reading any of my posts please let me know how much you are taking how often and how you are doing now. My arm is getting so bad and I strongly suspect it is from my chemo. My doctor called me on Christma eve day and gave me great information on this PET vs Cat struggle I have been talking about on this site. Have any of you heard of the peritoneal coating (recurrence) that is supposed to be common with our type of cancer? I have to do some homework on this. We may still be better off doing CAT scans.....I am anxious to hear what your Drs. think if any of you get the opportunity to talk to them about the preferred scans and the upcoming insurance changes. I had a very exciting Christmas........ my son put an engagement ring under the tree. (He was my baby for 17 years before my youngest daughter was born..) They didn't give us a wedding date yet... but we are getting excited about a wedding coming up in the future. Marge I was happy to hear about your surprise visitors and having your whole family there for you. It is so edifying to have family with us for support through this. Just like you said Linda... events seem to be more enhanced for us now. Also, Congrats on the rock!! I am sure it is beautiful and well deserved. Deanna was your first 'married' Christmas romantic? Talking about Christmas... my carpeting and presents under my tree caught on fire on Christmas eve. I was home alone, but I got it out before the tree (real tree) caught on fire. Never a dull moment .... God bless.

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

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.

.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

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 Friday

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

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.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

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

deanna14
Posts: 733
Joined: Oct 2008

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

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

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

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

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.

deanna14
Posts: 733
Joined: Oct 2008

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.
Hugs

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

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.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

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 concern

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

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.

deanna14
Posts: 733
Joined: Oct 2008

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,
Deanna

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

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.

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

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

deanna14
Posts: 733
Joined: Oct 2008

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.
Deanna

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

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.

deanna14
Posts: 733
Joined: Oct 2008

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!

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

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

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

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)))))

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

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!!!!

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

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!!!!

Hugs

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

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.

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

So glad to hear from you. Not such good news, but let's hope you can get better real soon. It might not hurt to run this past you Dr so next chemo might react different. (I am sure you thought of that.) I will extend an open invitation to all of you wonderful women: We should have a reunion after we are all well again. I have made up an annual holiday at our farm. We have a "Gathering" on the third Sat in Sept each year. This year will be our 14th 'Gathering'. We have a big potluck around our campfire pit, all the people bring their best recipes to taste and exchange. Then we go on a hayride and 'gather' 12 acres pumpkins, gourds, squash, Indian corn, popcorn, watermelon, cantalope, and anything else that is unusual that we can grow so that their kids can 'gather' it. When everyone is done 'gathering' we bring the tractors and wagons back to our yard and have the kids choose one item that is their favorite pick of the day and then they march in the 'pumpkin parade'. (most of the parents pick more than the kids.. many decorate their yards, homes, and church.) We also have a 12 car train for the kids to ride in. Some of the kids have been coming so long that they are way to old to ride in the train...but they just can't help themselves and hop in anyway!! When the day is over some of the cars are so full of produce that when they leave they are sitting so low that they barely clear the road!! I decorate the yard for days and even have an 'pottyhouse' that looks like a pumpkin. I will leave an open invitation to all of my UPSC sisters and families to come next year and all the years after that for our NED reunions!!! It is snowing here, another foot has fallen and we are sick of it!!! My best to all of you. Peggy

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Your words of support meant alot to me. It reminded me also that I'am not alone in this and I thank God for leading me to this site and you wonderful women. Feeling a little yuck today and my legs are starting to ache.But because you and Marge have mentioned having these side effects, I believe I'am able to handle them better.Really like your new picture Linda! Will eventualy try to get mine in. My son brought over homemade stuffed bellpeppers he made for me because he knows I love them.Hopefuly I have an appetite for them tommorow,I just am not hungry.....EVER
Marge, September sounds wonderful on your farm.Sounds like you all have a wonderful time.
Teresa

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

Someone just posted under the Discussion Thread 'Recurrent Endometrial Cancer' that has UPSC and is currently NED. (Under this same heading 'Gynecologic Cancer Other than Ovarian'). She asked me to email her, but I have no idea how to get her email address from her profile and am not even sure that is accessible to us. If you know how to get her email address from her profile, please let me know what it is, as she says she is not a 'discussion board' type person. There's not much more that I can say to her than what I posted, but she may be waiting for an email from me and never see my post. That's an interesting thread for any of you to read through anyway, as someone else there thinks they may have had UPSC originally but doesn't yet know the cell type of her initial cancer. If nothing else, it will steel your resolve to push through all of your chemo and rads. Re-occurance seems to happen to those who are not aggressive enough from the get-go. That's not any of us here; we are ALL going for the whole ball of wax and we will get each other through this, and get NED, and stay cancer-free!!

PS: feeling soooooo much better yesterday and today! Aches are gone, appetite back, and I worked a 12-hour day yesterday and Sunday with no naps, touching base with my staff and clients now that everyone should be back from the holidays. My only bad news: I had a Maryland Bridge (dental work) fall off this morning when I bit into my calcium chew! I made a dentist appointment for tomorrow and was told by the dentist to get an opinion from my oncologist today about doing the repair when my platelets are low. At minimum I'm hoping to get a flouride treatment to offset any possible chemo damage to my teeth. PEGGY: did your treatments compromise your teeth in any way?

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