Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm

jankenb said:

roll call
Hi I am Janet
I am a 52 year old physician who had radical hysterectomy Feb 25, and since 2 pelvic nodes positive and washings positive, I am stage 3c Grade 1
I started Chemo on March 25th with Carbo/taxol, I will recieve a total of 6 rounds.
I start brachy therapy on April 17th for 3 weekly and then External beam radiation on May 11th for 25 rounds

I had a PET/ctscan on March 25th because my doc thought this was all unusual for grade 1 tumour, and it was negative.

I am not certain what UPSC means but my tumour is endometrioid

janet

Rribbit said:

Hi Kelly and all - My name is Paige and I'm 38. I was diagnosed Jan. 09 after hysterectomy for fibroids. Unfortunately - due to the surgery plan we had for fibroids, they left in my ovaries, tubes and of course nodes, not knowing the cancer was there. Initially they thought I was 1C with about 65% myometrial invasion and grade 3 hybrid histologic type of large cell/neuroendocrine(small cell) cancer. But I had a PET scan in March that revealed spread to 1 pelvic, 1 paraaortic and 1 portal lymph node (still can't figure out exactly where that is, but have been told it's up high behind the liver). So they now consider me stage 3C at a minimum and probably stage 4. All other organs are clear thus far. Started Cisplatin/Etoposide chemo in Feb and just finished 3rd round last week w/3 rounds to go. Will repeat the PET scan next week to see if chemo is working and determine next steps for radiation. Plan is for full abdominal radiation for 6 weeks in the middle of chemo. However I am scared about the long-term side effects I see some of you having from this

Drs believe my portal node is a metastasis because it measures 3 cm. I am told that the portal node would be a highly risky surgery to do to go in and remove and also near impossible to radiate so chemo is the primary hope to reduce/eliminate it.

So far my only side effects have been low white blood counts and random chest heaviness. Kelly did the Neulasta work for you? did you have any side effects from it? My Dr told me it might not work as well for me since I'm doing 3 days in a row every 3 weeks and it works better for 1 day plans....but I don't want to delay treatment. Apparently the neuroendocrine part of my cancer typically recurs within 2 years, so I'm willing to blow a nuke bomb off in my body if it will help prevent recurrance! From what I understand, once it recurs - there's not much more that can be done? But just chemo that can buy you a few months of time? Anyone have any knowledge or experience otherwise?

bonniesue said:

again concerns over my mom- nurse lisa and those with this
I know you have responded in the past, but I am still anxious and I think you have about the same as my mom--Grade 1 stage 1C or 2B depending on which path report I look at and plus or minus lymphovascular invasion. Neg pelvic nodes and washings but only six pelvic lymph nodes taken. My concern is still that some are recommending just brachtherapy and some both. One plan was 27 txs of IMRT and two brachy so 4800 dose of rad plus brachy to add to 6000 as I understood it. My mom has started with this but I again am worried she will have bad complications like fistulas or small bowel problems and even though she is otherwise healthy(still working) very social she is 71 yo. These different recommendations come even as a difference within the rad. oncs and even between gyne oncs. I do not want a complication nor recurrence but it sounds like pelvic rad can give up to 5-15% complication rate. any advice?? my mom will be compliant and just feels frustrated and worried which is not helping her recovery and she was up post op day 1 and home after the robotic-- told all was well and then got the news two weeks later that the path report was more invasive which caused a frenzy of us getting other thoughts and opinions which takes a lot of time which cuts into your treatment and makes you jump to a decision. thanks bonnie

MaryAnnOnTheBay said:

Mary Ann, San Francisco Bay, UPSC recurrent
Mary Ann, UPSC, diagnosed February 2006. IIIa I think. Anyway III. Nothing in lymph nodes, a few rare cells in the wash. Surgery at California Pacific Medical Center, SF. Chemo at San Franisco Oncology, which has offices adjacent to CPMC. Carboplatin and taxol, Summer 2006, ending Sept 15, 2006. Hair presentable in December 2006. Recurrence discovered July 2008. Node found in omentum during surgery and nodes on base of lungs during CT scan. Smaller doses of taxol and carboplatin due to kidney problems. December 2008 through March 17, 2009. Due to start topotecan, used for recurrent cancer, about the end of May 2009, once a week. Never any discomfort from the disease itself, discomfort comes from treatment and kidney problem treatment. 73 years old. Never had radiation. retired. My friend in the picture is Lobo. You can call me Mary Ann on San Francisco Bay, or Mary Ann On The Bay, or Mary Ann SF (shorter) or anything to distinguish me from early member Mary Ann/Daisy.

bella09 said:

My name is Jean
Hi my name is Jean and I live in Colorado. In December 2008 I was diagnosed with clear cell uterine cancer. I am Stage 2B and Grade 3. My doctor removed 54 lymph nodes and they were all negative along with the washings. I had a total hysterectomy in January with the DaVinci robot. Two weeks later I developed an infection and was hospitalized for 2 weeks. I was out of work for 2 months due to another infection after the first infection cleared up. I just finished with 25 external radiation treatments and 3 internal treatments. May 18th was my final treatment. I have a follow up appt. on June 16th. I have been visiting this site for weeks, but never wrote my own post. I see how everyone is so supportive of each other and thought that I would give it a try. It seems like you have been through so much and I wish the best for all of you.

bella09 said:

My name is Jean
Hi my name is Jean and I live in Colorado. In December 2008 I was diagnosed with clear cell uterine cancer. I am Stage 2B and Grade 3. My doctor removed 54 lymph nodes and they were all negative along with the washings. I had a total hysterectomy in January with the DaVinci robot. Two weeks later I developed an infection and was hospitalized for 2 weeks. I was out of work for 2 months due to another infection after the first infection cleared up. I just finished with 25 external radiation treatments and 3 internal treatments. May 18th was my final treatment. I have a follow up appt. on June 16th. I have been visiting this site for weeks, but never wrote my own post. I see how everyone is so supportive of each other and thought that I would give it a try. It seems like you have been through so much and I wish the best for all of you.

deanna14 said:

I can relate
I can relate to the up every 1 to 1.5 hours during the night. I have nights like that and have had a couple UTI's. It usually turns out that I have a UTI when I get up that many times during the night. I also have had radiation and am being told that I have decreased bladder capacity as a side effect of the radiation. I just take a lot of naps when I feel tired.
That sounds like a pretty tough chemo regime. What cell type of cancer did you have? A lot of us here were diagnosed uterine papillary serous carcinoma. I would imagine that you are very tired if you are receiving carbo/taxol 3 times a month. I am getting ready to have my 6th and last carbo/taxol treatment. Mine were every 21 days, but I have had a couple of postponements due to low blood counts.
I have a lot of days when I am tired of being tired. Like I said, I rest when my body tells me to rest and sometime, if there are things I want to do, I push through it. Good luck and God bless you.