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

pjba11 said:

welcome
Wow... more of us again. This is so good for something so bad. Congrats on your NED! I am about a year ahead of you ?? (Nov 06 to March 07 in treatment) so I hope that gives you encouragement. I agree on your recommenation for emend. I had Taxol, Carboplactin, Aloxi, Dexomethasone, Compozine, Ativan, Emend, Benadryl, Zantac and Dexomemcjen. I think the aloxi dexomethasone was a betisec chemo IV. (thank God for Aloxi) I was scheduled for 6 chemo sessions but did 5 before blood clots ( 3 sessions chemo then external rad then 2 chemo then the brachy) Now I am an after effect mess, but I am alive and happy. Scared to death every 3 months to hear my results. I have spots in both lungs on my scans. But Drs are saying NED so far. I just got word today that my pap was negative and now the end of the month I scan and do CA125. What is your follow up and do you do CT or Pets ? We are all so hungry for what works to be NED!! God bless.... Hope you continue to stay on our thread and share with us!!

shortmarge said:

Welcome
Welcome to all our new comers. Support is a wonderful thing, holding each others hands in cyberspace!!!

I sit here tonight knowing that stopping the chemo treatment is the right thing to do. I am at peace with it. I am having more side effects then last time. Numb all over, not just my feet and hands but my face, tongue, legs. Having the off balance effect too but at least I haven't had the eye problems this time. My husband and daughter told me yesterday that for the first time through all of this I look sick. Silly, cancer free but I look like I have cancer.

I've lost all of my eyebrows, so tonight my husband shaved the little stubble on top of my head. This is the new beginning, the start of new life!!!!

Linda, I hope all goes well for you and you start your treatment back up on Monday but remember you need your strength also to help the fight. The discussion I had with the nurse was great. Talking about how chemo has become our security blanket, we feel safe on it. But we need to stay healthly too to fight the fight.

Deanna, hope you are doing well with your first treatment.

MIND, BODY AND SOUL.

Hugs.....

lindaprocopio said:

Deanna: arm still ok? Achy? Tomorrow's my CHEMO (I hope!)
I tried replying to Deanna's post twice over the weekend, but mid-post I got booted out, probably because I had too many other things open on my desktop. (I was trying to make sure the info I was sharing was correct.) I don't want Deanna to think I wasn't concerned about how she's doing and about that swollen arm. That really sounds like the CT-tech went right through your vein, you poor thing. And, Marge, please let us know if that facial numbness went away yet; that doesn't sound like much fun either!

I have been stressing that I didn't get a port, now that I've started to have more complicated chemos. With my platelets this low, I don't think they'd take the chance of inserting a port now. Now instead of the usual 2-sticks-per-chemo (blood work stick, then chemo IV); beside the CT-scan stick and bloodwork stick I had last week, tomorrow I may have to have a bloodwork stick, transfusion stick, 2nd bloodwork stick, and then finally chemo IV. That's a lot of needles for veins the CT-tech already said were showing a lot of scar tissue. Oh, well, one day at a time. I'm really worried about tomorrow and can't wait until I am through with whatever it takes to get Round 4 of my chemo into me. I'll post a report as soon as I feel up to it, but tomorrow will be a LOOOOONG day if I have to get a transfusion before my chemo.

The info I wanted to post is a new disgnostic procedure that is really what we should ALL be fighting to get if any of us has to have any further surgery for cancer re-occurence (God Forbid!!). This new technique involves taking the LIVE tumor cells harvested from the surgery and TESTING them with various chemo drugs to see which chemo drugs work best SPECIFICALLY for your INDIVIDUAL cancer! That way they already know BEFORE you start chemo exactly what drugs are most apt to be effective in killing your specific uniquely individual cancer. Isn't that amazing?!

The reason why this is so important to all of us is something that Peggy emailed to me from a very complicated medical report about endometrial adenocarcinomas (that's us, right?). It said: "In the serous papillary and clear cell category, EGFR positivity decreased survival from 86 to 27%. EGFR strongly correlates with tumor metastasis and patient survival in endometrial cancer. Altered expression of this oncoprotein may serve as a guide to prognosis and treatment in these patients." and "Seventy-seven percent of patients with metastatic disease were EGFR-positive versus 36% positivity in patients with no evidence of metastases."

This scary EGFR "epidermal growth factor receptor" is a protein on the cancer cell that causes it to reproduce and grow at a CRAZY-fast rate, and unless someone tests the live tumor cells with the chemo drugs that are so effective on EGFR, they don't know who has it and who doesn't. That's why it's so deadly, because EGFR goes untreated during chemo even though there are several very effective chemo drugs being used for other cancers that do a really effective job of suppressing EGFR, and that give the taxol/platin chemo drugs time to kill the cancer cells with EGFR before they reproduce too quickly to be dealt with. I'm not explaining it as well as I should, but if you are interested, you can put "EGFR" in the SEARCH box at the top of this page and there has been a LOT of discussion about this on other Discussion Boards here, and a lot of information about the various drugs that have worked so well to address this for people with other cancers. I know I would be afraid to learn that my survival rate had dropped from 86% to 27%, but I would be glad to know that I could still save myself by taking the newer EGFR-suppressing drugs. And that's why knowledge is power in this battle. I don't know that there is any other way to test for it except with live tumor cancer cells at the time of surgery, which is why it isn't commonly done, I'm guessing. But it seems important for women with UPSC to know, since there are drugs that really negate the power of it, and if our cancer cells have this EGFR mutation, we want those drugs!

lindaprocopio said:

more on tumor testing: then OFF TO CHEMO (hope hope)
I have to head out, but wanted to pull this added info for you (and print it out to discuss with my oncologist today!) This is from another post on this same website we are on, really good stuff!:

Findings presented at the 41st Annual Meeting of the European Society for Clinical Investigation in Uppsala, Sweden, April 18, 2007, concluded that "functional profiling" with cell culture assays is relevant for the study of both "conventional" and "targeted" anti-neoplastic drug agents (anti-tumor and anti-angiogenic activity of Iressa, Tarceva, Sutent, Nexavar, and Avastin in primary cultures of "fresh" human tumors).
Cell Culture Assays with "cell-death" endpoints can show disease-specific drug activity, are useful clinical and research tools for "conventional" and "targeted" drugs, and provide unique information complementary to that provided by "molecular" tests. There have been more than 25 peer-reviewed publications showing significant correlations between cell-death assay results and patient response and survival.

Many patients are treated not only with a "targeted" therapy drug like Tarceva, Avastin, or Iressa, but with a combination of chemotherapy drugs. Therefore, existing DNA or RNA sequences or expression of individual proteins often examine only one component of a much larger, interactive process. The oncologist might need to administer several chemotherapy drugs at varying doses because tumor cells express survival factors with a wide degree of individual cell variability.

There is a tactic of using biopsied cells to predict which cancer treatments will work best for the patient, by taking pieces of live "fresh" tumor tissue, applying different chemotherapy treatments to it, and examining the results to see which drug or combination of drugs does the best job killing the tumor cells. A cell culture assay test with "functional profiling," using a cell-death endpoint, can help see what treatments will not have the best opportunity of being successful (resistant) and identify drugs that have the best opportunity of being successful (sensitive).

"Functional profiling" measures the response of the tumor cells to drug exposure. Following this exposure, they measure both cell metabolism and cell morphology. The integrated effect of the drugs on the whole cell, resulting in a cellular response to the drug, measuring the interaction of the entire genome. No matter which genes are being affected, "functional profiling" is measuring them through the surrogate of measuring if the cell is alive or dead.
For example, the epidermal growth factor receptor (EGFR) is a protein on the surface of a cell. EGFR-inhibiting drugs certainly do target specific genes, but even knowing what genes the drugs target doesn't tell you the whole story. Both Iressa and Tarceva target EGFR protein-tyrosine kinases. But all the EGFR mutation or amplificaton studies can tell us is whether or not the cells are potentially susceptible to this mechanism of attack. They don't tell you if Iressa is better or worse than Tarceva or other drugs which may target this. There are differences. The drugs have to get inside the cells in order to target anything. So, in different tumors, either Iressa or Tarceva might get in better or worse than the other. And the drugs may also be inactivated at different rates, also contributing to sensitivity versus resistance.

As an example of this testing, researchers have tested how well a pancreatic cancer patient can be treated successfully with a combination of drugs commonly used to fight lung, pancreatic, breast, and colorectal cancers. The pre-test can report prospectively to a physician specifically which chemotherapy agent would benefit a cancer patient. Drug sensitivity profiles differ significantly among cancer patients even when diagnosed with the same cancer.

The "functional profiling" technique makes the statistically significant association between prospectively reported test results and patient survival. It can correlate test results that are obtained in the lab and reported to physicians prior to patient treatment, with significantly longer or shorter overall patient survival depending upon whether the drug was found to be effective or ineffective at killing the patient's tumor cells in the laboratory.
This could help solve the problem of knowing which patients can tolerate costly new treatments and their harmful side effects. These "smart" drugs are a really exciting element of cancer medicine, but do not work for everyone, and a test to determine the efficacy of these drugs in a patient could be the first crucial step in personalizing treatment to the individual.

Author/Speaker/Performer :Larry Weisenthal, M.D., Ph.D.;
Contact information: phone: (714) 596-2100.
Link: http://weisenthal.org/Weisenthal_ESCIa.pdf Source : Eur J Clin Invest 37 (suppl. 1):60, 2007

lindaprocopio said:

Had my chemo, with transfusion planned for NEXT Monday
I was able to have my chemo today! It was conditionally approved, as long as I agreed to come back next Monday, have another blood test, and am prepared to have a blood transfusion unless my hemoglobin (red counts) miraculously go UP after the chemo instead of further DOWN, which is the expected result. But for today’s blood work, the extra week’s delay allowed my platelet count to triple to well within the safe range. My red count only went up from 9.6 to 9.7, ALMOST to the safe threshold number of 10, and good enough for him to make an exception, with the transfusion next week. All I have to do is be careful not to faint and I can’t drive all week. I just have to get up slowly from the couch or out of bed; keep my head above my heart when I bend over; and not take any long hot baths or showers. And I’ll hold the rail and stop when I go up and down steps if I feel whoosy. I’ll be fine. So I have 4 of my total scheduled 6 chemo rounds in me, and a plan for the getting the last 2. They had to make 3 tries before they could get the intravenous in me for the chemo, as my veins are getting all scarred and hard from the earlier chemo. Surely I have 2 more good veins left and won't have to get a port just for those 2, although the poor girl poking me with the needles said she wished I would! So I am fine and very happy tonight, glad to be one step closer to this ordeal being over.

I asked Dr. White about all the research I did, and he said that it will be many years before that type of testing is done in this country. He told me that he thought I should take a break from internet research. THAT isn't likely! And if I have any kind of recurrance that involves surgery, this WILL come up again, but next time with my gyn-onc surgeon. So don't be surprised if your oncologists aren't receptive to this idea initially.

It was like a reunion today, with 3 of my "every Monday" chemo buddies all in for treatments, and that always makes the time go by faster. Now I need to email my family and friends that I promised to report to. I am exhausted, but may not be able to sleep tonight again, and "hampster days are here AGAIN" (so soon!) with the steroids jazzing me up.

shortmarge said:

Glad To Hear
Linda, glad to hear you have four down and two to go. Now you need to get yourself some funny movies, a comfy blanket and rest up. I bearly got out of my jammies last week, took it real easy, the whoozie head is crazy. I'm feeling much better this week, still get a little off balance when I'm tired but the numbness in my face and everywhere but my feet is starting to go away. My husband is sick so I'm trying to avoid him as much as possible (so far so good). My DIL came over and showed me how to draw on eyebrows, not so hard except my eye hand coordination is going due to age. Question, does the inside of your nose really hurt? Mine is sooooooo dry it's painful. I sleep with a humidifier and that seems to help but sometimes it hurts so bad it brings tears to my eyes.

Deanna, glad you had a great time at the Look Good Feel Better. Pray you are holding up well with your first chemo treatment. I pray for everyone everyday.

MIND, BODY AND SOUL!


Hugs

Teresa 61 said:

Welcome Kris Ann...
Welcome Kris Ann. Sorry to hear your mom is in this boat with the rest of us, but happy you found this site. It does feel better to know your not alone in this.
Deanna, hope your 1st chemo went well for you. On my 1st round as soon as I got to the check-in counter I started crying and kept it up for about an hour.(I mean big tears, I was a mess) They gave me Lorazapam and Benadryl and I slept for 4 hours and was still groggy when I got home. Anyway your 1st round is over with and I'm glad for you.
Linda, sorry to hear about your week delay. My sister-in-law said that happened to her daughter last year when she was going through chemo. But I know how you feel, I just want this all over with too.Congratulations on your CT scan!!!!. I went to a Look Good... Feel Better last week. I don't want to sound like a complainer, but I'm sure it wasn't as nice as the one you went to. Plus the woman sitting across from me had a bad cold.She said she asked and they told her it would be alright if she attended. I was not happy about that.
Marge, hope your doing well after your chemo. Sorry about the Eagles. I had my head shaved today. Couldn't take it anymore, there's hair all over the place. I was like a shedding shaggy dog. Thought I would cry when she started shaving, but was surprised I didn't, think I was just relieved to get it over with.
Peggy, your moral support is so wonderful. Makes me feel that "I WILL" get through this...

deanna14 said:

What a miserable side effect.
I had to bump up the fiber intake and it is helping me with the constipation, but giving me what we refer to as "man-gas", long and loud. I remember my brother talking about the chemo gas, so it make be a combo of the chemo and the increased fiber intake.
I am having this odd tingling sensation in my lips and tongue. I woke up with a cold sore at the corner of my mouth the day after chemo and have never had one before. Now this fleeting moment of tingly lips and tongue? Does this ring a bell with anyone. I was just going to ask about it at next appt. I will be curious to see what my counts are after the first round of chemo. I think I look very pale and my gums and mucous membranes look very pale. Any suggestions besides liver on what I should be eating?
That class was really fun, it was so fun going through all of the free bees. I am going to find myself some of those eyebrow stencils b/c I am having difficulty with free handing the eye brows. I look like a clown, so my next trip to town, I am getting some stencils.
I never have gotten email notification of posts, but I would like to know how to turn it on also, if you find out let me know.
Do any of you know anything about Cancer Treatment Centers of America?