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UPSC - aspiring new discussion member - recurrance last year - Mary Ann in San Francisco

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

Hi, Ladies. I was diagnosed with UPSC in February 2006, when I could not find a discussion like this. I have never met, in person or on line, anyone else with UPSC. They found recurrence in July 2008. I've finished my second series of 6 carboplatin-taxol chemo on March 17 and have the barest fuzz of hair back. My doctor is discussing starting me on topotecan in a couple of weeks. I am 73 years old. I have been skimming through some of the postings and would really enjoy your support. The support group I was in, 3 ovarians and me, fizzled out, I think as the women went back to full work schedules. Mary Ann on San Francisco Bay

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

Welcome... this board is awesome. I was diagnosed eight months after you in 2006 with UPSC. I was told I had cancer on my 54th birthday. Had surgery 6 days later.. I could not find anything except grim grim grim on the internet. So glad to have all of these sister to share with. So sorry to hear that you are back into treatment. I wish you well. My prayers are with you.

deanna14
Posts: 733
Joined: Oct 2008

So sorry that you are dealing with reoccurance, but glad that you have found this board. Everyone here is very supportive. I don't know what I would have done without them. I have wonderful support from family and friends, but there is just something very comforting about discussing things with folks who really know and understand what you are going through. So welcome... I hope you find this to be as helpful as I have.

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

I'm so glad that you found us. When I started posting here in October 2008, I'd just had my hysterectomy and staging and was recovering so that I could start chemo. Besides me, the initial core UPSC group at that time was Peggy (who is a 2 year survivor, no recurrance); Deanna (who was one month ahead of me in treatment) and Marge who was just entering treatment also. It was interesting that I was given all my chemo 1st (6 rounds Carbo/Taxol) and am in the midst of my radiation now (I've had 8 of my scheduled 28 rounds external pelvic IMRT to be followed by 3 internal vaginal bracys.) Deanna was given all of her radiation first (and now has just 1 more round of chemo to get this month and then her initial treatment protocol is over); and Marge finished up a couple of months ago with her initial treatment protocol and is NED and in full remission.

If you're willing to share, please tell us all about your cancer stage and initial treatment. Will you also receive radiation for the recurrance and is topotecan a maintenance drug? (I will have to look it up; I am unfamilar with it. Sorry.) 2 years ago, Peggy was given the aggressive 'Duke University' treatment protocol of 3 rounds of carbo/taxol, followed by the 25 external pelvic & 3 internal radiation treatments, followed by the remaining 3 chemo rounds. Several of the other UPSC Sisters here are currently having their radiation 'sandwiched' into the middle of their chemo rounds. I was curious if you were given the same treatments as Peggy, as you were diagnosed at the same time, and that was really super-new at that time.

We all think about the possibility of recurrance more than we want to. I wonder if the diagnosis is as devastating as the initial moment when you were told you have cancer. You don't have to share something as personal or painful as that, but please know that you are welcome to. I think some part of me has been preparing myself for that possibility all along, as much as I am still focusing on the initial battle and hoping to win the war the first time around. Please know that we are here for you. ((((Mary Ann))))

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Another Mary Ann with UPSC! I was diagnosed in Sept. 08- stage 3a. I had 6 rounds of taxol/carbo and no radiation ordered so far. I'm pending some tests - PET and blood work.

My husband found this site - it's been helpful to have others that know exactly what you are going through - the grim and the hopeful.

Best wishes with your treatment. We are all here for you.

Mary Ann in SW Florida

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

My initial treatment was similar to what you all are familiar with, hysterectomy, chemo (taxol and carboplatin). Finished 9/15/06. A presentable head of hair by mid-December, curly and grayer. Those white hairs are tough. Lost curls and got more brown hair back so it looked less gray. Good insurance, medicare and Blue Shield supplemental. No co-payments, occasional insurance drug refusals. CT scan after hysterectomy, before chemo.
Recurrance diagnosed July 2008. I did not have a CT scan after chemo. The next CT scan was in the emergency room, April 2008 for right side pain which turned out to be kidney. Following another CT scan in July, I had surgery for intestinal obstruction which occurred from surgery (urologist surgeon) to repair right uterer (tube from kidney to bladder). Internal medicine/surgeon had seen nodule on CT scan and popped it out on his way to a kink in my gut. There was also something on the base of my lungs. Pathology from the removed nodule revealed our old adversary UPSC. Internist surgeon came to tell me about it in his usual rushed manner. Expressing sincere sympathy in 60 seconds or less. I was feeling pretty bad from the obstruction, so it was sort of “death, where is thy sting.” I called offices for my chemo oncologist and my surgeon-gyn-UPSC researcher oncologist. I was feeling alone. Then I found out all the nurses knew, but would not bring it up until I did. Felt better when I could talk to them. My chemo oncologist, whose offices are in a building attached to the hospital, came to my bedside within about an hour. He made me feel cared for. I hadn't eaten for about a week, just IV. If I didn't poop, or at least pass gas, they were going to attach an intravenous food line. I really didn't care much about living. I had 72 good years, really a fair share. Then they moved me to another room with a view overlooking San Francisco Bay near the Golden Gate Bridge. Boats were passing back and forth on the bay and under the bridge. I got another in a series of really interesting roommates. This young lady had a cancer far worse than mine, I forget which one she had. She was to go to another hospital for some kind of stem cell treatment. I stopped feeling so sorry for myself. My gut reactivated itself suddenly, requiring a clean up crew, but at least I was allowed to eat and drink again. Life was attractive again, more so when I went home.
I didn't start chemo again until December. First they were waiting for my kidney function to improve. Then, in November, I needed to drive to Iowa and back and the doctor did not want to start if there was going to be a delay in the middle. My grandson, 20 years old, came from Arkansas to live with me, to help me. He enrolled in community college. He had never been to school before, having lived in a decrepit trailer, at the end of Whiskey Road, in the piney woods of Georgia and been home schooled. He is an amiable, responsible young man. His other grandparents, both of whom died of cancer last year, refused his help. They don't know what they missed.
I had the same chemo as before, taxol and carboplatin, but in a lesser dose because of the kidney problem. I had a less potent anti-nausea drug (zofran instead of E-mend) and the doctor said this is why constipation was much less of a problem this time around. First chemo 2006, I would go from crying from constipation to raging diahrea between about the 4th and 5th day. Also I am retired now and I worked as a secretary through the 2006 chemo. So this chemo was much easier, though I allowed myself to goof off totally on days 3 and 4 of the cycle.
The chemo nurses gave me a bracelet. One of their chemo patients had made a bunch of them, and attached a card with talk of bravery or some such. Instead, when I look at it, it tells me “Live!” If the kidney thing is not a result of the UPSC, and the doctors don't think it is, then I have had no problems from my disease, only from the treatments. I need to stop lying around and watching Judge Judy on TV and get out there and ride my bicycle, paddle my kayak, like I did before April of last year. If I am to live, I need to make full use of my allotted time. I switched from living on a power boat with no power to a sail boat, fully functional. Several friends have offered to help me learn to sail. I can get the grandkid to do the hard work. So if I don't know how long I will live, and apparently it can be years with UPSC, with chemo from time to time, then I need to fully live my time. The one project I do seem to be working on ok is writing my memoirs. A lot has happened since 1936.
Treatment: Topotecan. According to the CT scans, after round three and again after round 6, my nodules shrank the first three treatments, but did not shrink any more after the fourth through sixth treatments. The visible ones are on the base of my lungs. I did not have recurrance at the vaginal cuff and my surgeon/oncologist checks this with a pap smear every 6 months. He's the one who advised against radiation. I looked up Topotecan and it seems to be given to people with a recurrance. So hopefully it will be useless information for you-all. My chemo doctor says it does not cause hair loss, but the website says it does. I was really looking forward to the curly, post chemo hair again. It was the only time in my life I had curly hair. Nothing has been said about radiation, although a radiation oncologist has been present at two of my chemo doctor's appointments. I see the surgeon/oncologist again tomorrow. I need to ask both of them about this.
Linda, I found that after I finished my first series of chemo, 2006, I gradually thought less and less about recurrence, perhaps helped by the lorazapam (anti-anxiety) I took every night for a sound sleep. I hope you may be able to gradually think less and less about recurrence and totally forget about it as you pass your fifth year NED. I need to get some perspective on “living with cancer.” I am planning on going to a support group for women with gynocological cancer at Stanford next week. You hear about the ovarians living with theirs for years even with recurrence. If they have a chance, I should have a chance as a UPSC sister. Mary Ann on San Francisco Bay

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I posted on another one of your entries, before I read this one. What a story you have. You sound so positive with all you have been through. I think that is great. You talked about your roommate who was worse off than you. I think we all need to remember there is always someone worse off than we are. Somedays it is just hard to focus on that. I will be interested to hear what you surgeon/onocologist have to say about radiation. You are 72 years old, may you continue to enjoy those grandchildren and give them many more memories of you. Keep the positive attitude.

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

I'm Barb. I was diagnosed in 2007 UPSC stage 3C. Just wanted to welcome you to this group and wish you well. Am curious about topotecan- must look it up. Would you mind sharing how the recurrence was found? Sending some strength from the east coast on a wet and chilly day.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Sorry to hear about you reoccurrence of UPSC and that you had to undergo another 6 rounds of Chemo. I am not familiar with the "topotecan" either. It will be interesting to hear about your initial diagnosis, if you are willing to share that information. I was diagnosed with stage III-C, so I do worry about reoccurrence. I certainly pray that the chemo and radiation will take care of all those cancer cells. I am one of those who have the "sandwich treatment". I have 4 more external radiation and then one internal radiation which will be done as an in-patient, and then 3 more rounds of chemo. Welcome to our discussion board. HUGS to you.

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