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

pjba11

Your hats are so fine!!
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

scans
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.

lindaprocopio

My oncologist said PET scans aren't approved for UPSC.
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!

deanna14

pjba11 said:

scans
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.

Oh Peggy...
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?

pjba11

1st pet 2 yrs ago
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

Mouth sores beginning to keep me awake.
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

Thought we needed something uplifting today.
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

e-mailed PET information
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!!

sisikoff

deanna14 said:

Neuropathy
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).

neuropathy
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

5 1/2 year survivor! Now THAT gives me hope!
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

lindaprocopio said:

5 1/2 year survivor! Now THAT gives me hope!
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!

MOUTH SORES
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 saltwater 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

The baking soda mouth rinse really seems to help.
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

lindaprocopio said:

The baking soda mouth rinse really seems to help.
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.

BEST CHRISTMAS PRESENT EVER
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

shortmarge said:

BEST CHRISTMAS PRESENT EVER
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

What a wonderful surprise!
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

Oh, Marge! I am so HAPPY for you! ((((Marge)))))
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

lindaprocopio said:

Oh, Marge! I am so HAPPY for you! ((((Marge)))))
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!

Hugs to all...
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

deanna14 said:

Hugs to all...
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!

I feel like I 'cashed in' on my cancer this Chistmas! HO HO HO!
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

lindaprocopio said:

I feel like I 'cashed in' on my cancer this Chistmas! HO HO HO!
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.

Happy New Year !!!!
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

intraperitoneal exfoliation
Peggy, I'm so sorry about that fire! Did you lose many gifts? I hope your Christmas was still a happy one. Marge should have had her 3rd chemo round Friday and I will have my 3rd chemo on Monday, the halfway point! I will ask my oncologist Monday about intraperitoneal exfoliation and how they determine if that is an issue.

I looked up intraperitoneal exfoliation because they found microscopic cancer cells floating in the peritoneal wash when they did my initial debulking surgery, and my UPSC was 1st found when a wandering exfoliated cell made its way down to where my PAP test was done. So cancer spread through exfoliation has been a nagging worry in the back of my mind. Hopefully the chemo and radiation will knock out any lingering wandering cells, but I did find some good info (easy to understand) about this topic at the John Hopkins ovarian cancer site and will paste it in BELOW, in case any of us face reoccurance years down the road (remembering that they are discussing OVARIAN CANCER here, but do explain this peritoneal coating):

Intraperitoneal exfoliation -- the majority of ovarian tumors grow outward and project into the abdominal cavity, similar to stalks on a plant. The metastatic or spreading cells are exfoliated (similar to exfoliating skin cells) and get caught in the abdominal cavity and float in the abdominal fluid. The process of ovarian cancer spread is analogous to scattering sand across a table – each of the sand particles gets exposed to every part of the surface of the table. Similarly, each metastatic ovarian cancer cell spreads and sticks to each abdominal organ and grows into small tumors. Intraperitoneal exfoliation tends to occur simultaneously with direct extension;

Peritonectomy: This technique is also called peritoneal stripping. It is based on the fact that everything in the abdominal cavity is lined with peritoneum – a one cell layer thick coating, akin to covering everything in the abdomen with cellophane. Ovarian cancer tends not to penetrate the peritoneum, but spreads along the surface. In a peritonectomy, surgeons peel the “cellophane” or peritoneum off the underlying structure. This does not generally compromise the integrity or immunity of the organs since the peritoneum regenerates itself.

Radical Oopherectomy for Frozen Pelvis: A select group of patients will present with massive local extension of the disease. The tumor will involve the uterus, peritoneum, bladder, sigmoid colon, and rectum and basically obliterates all the normal anatomy for the pelvis. It looks like a bucket of cancer sand was poured into the pelvis. Incisions are made in the peritoneum at cancer sites, and the cancer is peeled away along with all of the attached structures towards the center of the pelvis leaving the blood vessels, ureters, and bladder intact. Because the colon projects into the cavity, it is usually involved in the cancer, and so a portion of the colon may be resected as well and hooked back up to the rectum. The procedure leaves a disease-free pelvic area. In order for your surgeon to deliver chemotherapy directly into your abdomen, you will need to have an intraperitoneal (IP port) placed. This is done either at the time of your initial surgery or within a few weeks after you recover from the initial debulking procedure through a laparoscopic approach. The port is placed in the operating room and the procedure takes approximately 60 minutes. The port is the size of a half dollar and will be placed under the skin, just directly over the bottom of your rib cage, in the left upper quadrant of the abdominal wall. The tubing of the port will be tunneled under the skin of your abdominal wall and placed into the peritoneal cavity through a small hole. The tip of the catheter is placed directly into the pelvis. There are multiple small holes along the catheter tubing that facilitate the delivery of chemotherapy.

Metastatic Disease: hematogenous – this type of metastasis is less common and involves spread to the liver or lung parenchyma cells, which are the cells in the organ itself, as opposed to connective tissue or blood vessels. Lung involvement most often occurs as a pleural effusion, which is a build-up of fluid between two layers of a lining covering the lungs called pleura. As opposed to traveling through the blood system to the lungs, it is believed that these tumor cells spread first by intraperitoneal exfoliation up toward the diaphragm, then they implant on the diaphragm and migrate through the diaphragm to the lymphatics and migrate to the underside of the pleural surface of the lung and create the effusion.

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pjba11

Welcome
I came on here this morning to wish Linda the best for today and to see how Marge was doing after chemo. Then I find your post. I am so very sorry. Your world has changed too. You are right... it does certainly feel like a bad dream and we can't wake up. Our bodies have betrayed us. Please come to our site and let us keep you focused on the fact that we are all here together fighting for the chance to be normal again. We are going to get through this and together makes it easier. As you have seen on the post I am a 2 yr survivor and if there is anything I can help you with please ask. God bless.