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

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  • Fayard
    Fayard Member Posts: 438

    Hi. My name is Shel
    Hi. My name is Shelly. I was diagnosed with stage 1B uterine cancer in Jan 09 and had a abdominal hysterectomy also removing lymph nodes and ovaries in Feb. 09 @ Hoag, Newport Bch, CA. Currently in the 3rd month of chemo (carbo/taxol) 3 times a month for six months and once a month 9 months after. I am also having to get both shots for red blood cells and white blood cells. (sorry I forgot what their names are)
    I have had 2 bladder infections so far and am not getting very much sleep. Most nights I wake up every 1 to 1 1/2 hours. I am very tired all the time and am not sure what is due to the chemo. After trying to treat the bladder problem my oncologist has requested a referral to a urologist but OMG they are hard people to get to see!
    My family and friends are very supportive but I am really getting tired of being tired all the time! Has anyone else had this problem and what did you do?
    Thanks!

    Hello
    Hello Shelly,
    I was diagnosed with uterine cancer stage 2B, grade 3.
    I am just about to finish my last chemo treatment this Friday July 22, 2011.
    I had a radical hysterectomy, including removal 58 lymph nodes. The lymph nodes were all clean, but the tumor in the uterus invaded the cervix wall.
    Any way, the only treatment my doctor recommended was chemo, taxol/carboplatin.

    It is very normal to feel tired after chemo, however, please talk to your doctor as soon as you have a chance. In regard to not being able to sleep well, it could be the steroids they might be giving you with each treatment. I was given steroids every time I had chemo for about 3 months. After that, apparently the protocol changed and I only got it the first day of each cycle, which is was also when I had both chemicals (taxol and carboplatin).

    My doctor prescribed me AMBIEN, but it did not work for me at all. I still take it, and it works some. I do to have a hard time going to sleep. I take 1 AMBIEN before bed, and when I wake up 3 or 4 hours later I take an anti-anxiety pill.
    Are you currently working?

    I am guessing you did not do too bad with the infections, since that could have delayed your treatments and you have not mention anything about it.

    I hope this helps you. Stay in touch.
  • strongformom
    strongformom Member Posts: 17
    Hello from Barbara's daughter Jennifer in San Diego, CA
    Hello everyone,

    I'm so relieved to find a good source of information and caring sisters-in-arms!

    My name is Jennifer Hinton, and I live in Texas. My mother Barbara has been diagnosed with Stage 4B cancer and she lives in San Diego. She is 72. She had a successful hysterectomy about two weeks ago and is recovering from surgery. The doctors had to remove her omentum (tissue near the stomach) as well, and two lymph nodes. The doctor said although she is 4B her prognosis a bit better because the cancer has not been detected anywhere else.

    All of her lymph nodes are negative for cancer and no other organs are showing signs of cancer. Her cancer "flew under the radar" for a long time because she had no vaginal bleeding and had CA125 reading was within normal level even pre-surgery.

    She's been recommended to have chemo at the Ximed center/Scripps in SD which will last through December.

    My mom is not strong enough to be on online yet, but I hope she will be soon.

    Best wishes for all of you here,

    Jennifer
  • missbabsonmars
    missbabsonmars Member Posts: 29
    nursey420 said:

    My Name is Lisa
    Hi everyone My name is Lisa I am a RN in the state of Minnesota. I was diagnosed on Jan 20 2009. Had total hyst on Feb 22 via Divinci robot. The cancer was 69% thru the wall and into my cervix. Lymph nodes and washing negitive. I am stage 2B. Started external beam radiaiton on 3/23 and will have internal HDR after the external is completed.I need 25 session of external and 4 session of internal. So every morning I get up and go to radiaiton. I was very happy to find this site as I felt that no one knew what I was going thru. There are support groups in my area for every cancer but mine.

    Check for Metastasis!
    Lisa - I was in the same situation that you are last year. Because the lymph nodes and washings were all negative, i was told that the cancer had not spread. I was on a schedule of pelvic exams every two months. I had no idea that it could metastasize to the lungs. Consequently, i was not scheduled for a CT scan or any other test to monitor for metastasis. Fortunately, I thought I had bronchitis and was given a chest x-ray that showed a change since the last chest x-ray. This led to CT scan and biopsy and that's when I learned that my cancer had metastasized.

    Babs
  • rejoice1946
    rejoice1946 Member Posts: 9

    Selene from Texas
    Hello my name is Selene, I'm 27 years old and I was diagnosed with Adenosarcoma about two weeks ago. I have a full hysterectomy set for September 15. Does anyone have information about adenosarcoma?

    Selene from Texas
    I just had a hysterectomy for an adenosarcoma. This is different from MMMT or mixed mullarian adenosarcoma. I had two fibroids another polyp and a cyst on my ovary that were all benign. The original adenosarcoma was encapsulated in a polyp that was removed with a D & C. The doctor tells me I am cancer free. I will want to see him in 6 mos. however, to see if he plans to do cat scans for my lungs and vagina as that is usually where it might recur (if it does). It is a rare disease, but my doc at Univ. Hospitals in Cleveland has seen 7 cases including mine. He tells me they are all doing well.
  • txtrisha55
    txtrisha55 Member Posts: 693
    ROLL CALL - MMMT - Dallas TX - Treatment UT Southwestern
    I had a D&C done in March found out April 1, 2011 that there was MMMT cancer cells. When to the GynOnc on April 4th had complete radical hysterectomy April 8th. Path report was 5x5x1.5cm tumor in uterus w/ 2 microscopic cells in 1 lymph node which made the MMMT a stage 3C1.
    May 6th had 1st chemo treatment of carbo/taxel. I had six rounds of that every 21 days, I had the last one on Aug 22. I go back on 12 Sep for CT Scan/blood work then meet the Dr. on 19 Sep for results.

    Main side effect was hair loss, some joint paid usually about days 4-9, taste changing and being tired. I prefer to just go bald and have gotten good at shaving my head.

    I took 8 weeks off for the surgery and started back to work on 6 June. I took off when I got the chemo and when I started hurting.

    I took Carbo/Taxel as I had asked the Dr what she would recommend knowing what stage I was and she said the Carbo/Taxel and no radiation. Hopefully in two weeks I will get the all clear. They are going to monitor me for the next 3 years but since they took out all the cancer cells, I am hopeful it is all gone and did not spread.
    Trish
  • txtrisha55
    txtrisha55 Member Posts: 693
    kfparke said:

    Kathy from Kansas - MMMT diagnosis
    Uterine tumor was detected and biopsied on November 18, 2010 during visit to OBY/GYN for slight vaginal bleeding episode. Da Vinci Robotic hysterectomy (tubes, uterus and ovaries removed) performed December 22,2010 with 35 lymph nodes removed and no involvement seen in lymph nodes and tumor had minimal invasion of the uterus. Staged at 1A and of course Grade 3 (MMMT -aggressive and unpreditable). Chemo (carbo/taxol) total of six treatments every 3 weeks prescribed and have completed 3 treatments thus far with minimal side effects. CA125 was taken AFTER first treatment so I don't know if this will be a good marker or not for me but will continue to ask for the test. Current CA125 is 15. No radiation in my treatment plan either.

    MMMT - Trisha from Dallas, TX
    I too was found to have MMMT. I found mine in March 2011, had surgery to remove uterus, ovaries, tubes, cervix, 10 lymph nodes, and the omentum. Tumor was 5.5x5x1.25cm in the uterus and they found 2 microscopic cells in 1 lymph node, which made it stage 3C1. I took the carbo/taxol for six treatments and no radiation.

    I go for CT Scan 12 Sep and the results on 19 Sep to know if it has spread or is gone. CA125 before surgery was 15 after surgery jumped to 169 then has continually gone down during Chemo and now is at 22. I had the last chemo on 22 Aug so expect it to go down even more once I have the blood test.

    How are you doing now? It was nice to find someone having the same as me in basically the same time period with same treatment.
  • debrajo
    debrajo Member Posts: 1,095
    USPC
    Hi every one, my name is Debra Phillips from Vidor, Trxas. I was diagnosed July 2009 with USPC at stage 1a. I had a radical hysterectomy Dec.3 2009 followed by five rounds of vaginal radiation and six rounds of Taxsol/Carboplatin. My C125 as of June 2011 was 14 and I have been seventeen months in remission. Thanks to all on the board and would love to hear from ya'll!
  • debrajo
    debrajo Member Posts: 1,095
    USPC
    Hi every one, my name is Debra Phillips from Vidor, Trxas. I was diagnosed July 2009 with USPC at stage 1a. I had a radical hysterectomy Dec.3 2009 followed by five rounds of vaginal radiation and six rounds of Taxsol/Carboplatin. My C125 as of June 2011 was 14 and I have been seventeen months in remission. Thanks to all on the board and would love to hear from ya'll!
  • debrajo
    debrajo Member Posts: 1,095
    USPC
    Hi every one, my name is Debra Phillips from Vidor, Trxas. I was diagnosed July 2009 with USPC at stage 1a. I had a radical hysterectomy Dec.3 2009 followed by five rounds of vaginal radiation and six rounds of Taxsol/Carboplatin. My C125 as of June 2011 was 14 and I have been seventeen months in remission. Thanks to all on the board and would love to hear from ya'll!
  • debrajo
    debrajo Member Posts: 1,095
    USPC
    Hi every one, my name is Debra Phillips from Vidor, Trxas. I was diagnosed July 2009 with USPC at stage 1a. I had a radical hysterectomy Dec.3 2009 followed by five rounds of vaginal radiation and six rounds of Taxsol/Carboplatin. My C125 as of June 2011 was 14 and I have been seventeen months in remission. Thanks to all on the board and would love to hear from ya'll!
  • Fayard
    Fayard Member Posts: 438

    Hello from Barbara's daughter Jennifer in San Diego, CA
    Hello everyone,

    I'm so relieved to find a good source of information and caring sisters-in-arms!

    My name is Jennifer Hinton, and I live in Texas. My mother Barbara has been diagnosed with Stage 4B cancer and she lives in San Diego. She is 72. She had a successful hysterectomy about two weeks ago and is recovering from surgery. The doctors had to remove her omentum (tissue near the stomach) as well, and two lymph nodes. The doctor said although she is 4B her prognosis a bit better because the cancer has not been detected anywhere else.

    All of her lymph nodes are negative for cancer and no other organs are showing signs of cancer. Her cancer "flew under the radar" for a long time because she had no vaginal bleeding and had CA125 reading was within normal level even pre-surgery.

    She's been recommended to have chemo at the Ximed center/Scripps in SD which will last through December.

    My mom is not strong enough to be on online yet, but I hope she will be soon.

    Best wishes for all of you here,

    Jennifer

    Hola San Diego
    Hi Jennifer,

    I also live in San Diego. I finished treatment July 22, 2011, and I had it at my Dr. office at the Ximed Medical Center.

    Your mom, or you can reach me, if you like at [email protected]
    I would like to know who her doctor is.

    Take care!
  • Crystalinda
    Crystalinda Member Posts: 1
    daisy366 said:

    Mary Ann - southwest Florida
    I have stage 3a uterine papillary serous carcinoma (UPSC) with metastasis in distant lymph nodes, radical hysterectomy 9/08, finished 6 rounds of taxol/carboplatin in Feb.

    I just got verbal results of CT scan which showed "shotty" evidence of cancer still in neck and axilla (underarms) - bummer :( I will review films next week and meet with my new doctor soon to discuss next line of attack.

    Southwest Florida
    I also live in Southwest Florida (Naples) and was recently diagnosed with UPSC. Am currently awaiting robotic hysterectomy, etc on June 19. Would love to establish contact. I see that you are active on the CSN site (over 1000 posts), and would like to get to know you. This journey is better traveled in company.
  • Hilajoan
    Hilajoan Member Posts: 21
    roll call
    I'm Joan, live in London.registered November last year after surgery/hysterectomy. MMMT /carcinosarcoma diagnosed. Had a hormone-sensitive breast cancer (mastectomy) few months earlier - unrelated! Just out of hospital now after lung Mets surgery -MMMT again. About to start the rounds of oncs. I am also on the UterineMMMT Yahoo group. I try to be as informed as possible - but gloomy about my prospects now as there seems no definitive treatment.
  • Ro10
    Ro10 Member Posts: 1,561
    Hilajoan said:

    roll call
    I'm Joan, live in London.registered November last year after surgery/hysterectomy. MMMT /carcinosarcoma diagnosed. Had a hormone-sensitive breast cancer (mastectomy) few months earlier - unrelated! Just out of hospital now after lung Mets surgery -MMMT again. About to start the rounds of oncs. I am also on the UterineMMMT Yahoo group. I try to be as informed as possible - but gloomy about my prospects now as there seems no definitive treatment.

    Joan sorry to hear about your mets to your lung
    You have certainly been through a lot with MMMT and breast cancer. I hope the oncologists come up with a plan for you. I can certainly understand you being " gloomy". You will remain in my prayers. In peace and caring.
  • daisy366
    daisy366 Member Posts: 1,458
    Ro10 said:

    Joan sorry to hear about your mets to your lung
    You have certainly been through a lot with MMMT and breast cancer. I hope the oncologists come up with a plan for you. I can certainly understand you being " gloomy". You will remain in my prayers. In peace and caring.

    Joan
    Are your doctors biopsying your tissue? A tissue assay will help determine which agents your cancer will respond best to. Since cancer tends to morph - it is good to get these assays done with each recurrence.

    Just a thought. I also hope your treatment team comes up with an effective plan. Please don't lose hope.

    Hugs, Mary Ann
  • seaturtle
    seaturtle Member Posts: 41
    ro_NJ said:

    radiation first
    The oncologyst recommended it because he said that if we kill off the cancer, or shrink the tumor - it'll be safer for him to operate - plus we all know what happens if the dr accidentally cuts into the cancer - I'll have it more places than I want it. It made sense to me.

    As for vitamins - I'm taking "over 50" Garden of Life - whole foods have it - it also has probiotics in it - my chiro, who is into holistic healing - recommended it to me... I don't usualy take vitamins, as they make me sick, but so far, they haven't bothered my stomach or made me nausious. Post surgery, he's suggesting - goldenrod / echenisia drops under your tongue to promote healing - and yogurt for your stomach as well - have to put the good bacteria back in your body. (p.s. pardon my spelling)

    Ro

    Joining in
    I am 65 and just diagnosed with Level 1 uterine cancer (from prescribed estrogen, long-term). I have to come off estrogen abruptly, surgery is scheduled for this Tuesday.
    I am in southern Vermont, going to Dartmouth for surgery.

    I welcome this forum, the only support I have. Locally, there is supposed to be a cancer group run by the hospital, but they don't have enough people (!) who want to join it.

    I am on SSI alone, no Social Security. I do have 6 cats (lost one Monday to cancer), who are my little family. My second love is my garden.

    I'd like to be called Turtle (one of my favourite animals).
  • Hannah1
    Hannah1 Member Posts: 63
    California
    My name is Hannah. I was dx with carcinosarcoma on 2004, had 2nd opinion and final
    dx was uterine carcinoma, hysterectomy , chemo and interna and external radiation also
    done. On 2008 , had stage 1 left breast cancer , lumpectomy done. On 2009 stage 1
    thyroid cancer, thyroidectomy done. I was ok but now thyroid cancer had metastazed to
    my lungs. Did lung biopsy. . I'm feeling ok , no symptoms. I will see my Endo Dr Tuesday
    For further treatments. I'm staying positive all the way.
  • LizGrrr
    LizGrrr Member Posts: 124
    Hannah1 said:

    California
    My name is Hannah. I was dx with carcinosarcoma on 2004, had 2nd opinion and final
    dx was uterine carcinoma, hysterectomy , chemo and interna and external radiation also
    done. On 2008 , had stage 1 left breast cancer , lumpectomy done. On 2009 stage 1
    thyroid cancer, thyroidectomy done. I was ok but now thyroid cancer had metastazed to
    my lungs. Did lung biopsy. . I'm feeling ok , no symptoms. I will see my Endo Dr Tuesday
    For further treatments. I'm staying positive all the way.

    Can't believe I didn't post here last year - UPSC 1a
    I was diagnosed with UPSC 1a just about a year ago. I'd had trouble sleeping and heavy bleeding/irregular periods all summer and just thought it was menopause.

    Finally went to my GP in early September, asking for the hormone test to confirm menopause. She refused and sent me to my gyno. From there:

    9/27/11 - transvaginal ultrasound: I've got a fibroid!

    10/17 - scheduled for a D&C, which turned into a robotic hysterectomy (I had a septum in my uterus which kept the gyno from seeing the whole uterus...go figure)

    10/20 - recovery was swift until I got the call from the gyno - can you come in and talk about your pathology results

    11/7 - laparotomy/staging surgery; onc #1 says I don't need anything afterwards unless I 'want' to do 3 prophylactic rounds of chemo, onc #2 says I should be including radiation in my treatment. Confusion abounds. after much research and conversations with NIH, I fire onc #1

    12/19 - after edema (retained 22 pounds of water) and a couple of incision infections, started chemo

    1/3/12 - 2nd chemo

    1/23 - 3rd chemo

    February/March - external radiation

    4/24 - 4th chemo

    5/16 - 5th chemo

    6/5 - 6th chemo

    I now have about 3/4" of hair on my head and I have to shave my legs again. I still have occasional aches and pains, but those are dwindling and my abdominal swelling continues to subside.

    I had a 2nd post-treatment CT last week exploring some lymph nodes, I have breast ultrasounds every 6 months because I've developed fibroadenomas, and my liver and magnesium levels are not what they should be.

    Still, I feel great, sleep well, and walk the dogs frequently.

    Liz in Dallas
  • SettledSue
    SettledSue Member Posts: 55
    LizGrrr said:

    Can't believe I didn't post here last year - UPSC 1a
    I was diagnosed with UPSC 1a just about a year ago. I'd had trouble sleeping and heavy bleeding/irregular periods all summer and just thought it was menopause.

    Finally went to my GP in early September, asking for the hormone test to confirm menopause. She refused and sent me to my gyno. From there:

    9/27/11 - transvaginal ultrasound: I've got a fibroid!

    10/17 - scheduled for a D&C, which turned into a robotic hysterectomy (I had a septum in my uterus which kept the gyno from seeing the whole uterus...go figure)

    10/20 - recovery was swift until I got the call from the gyno - can you come in and talk about your pathology results

    11/7 - laparotomy/staging surgery; onc #1 says I don't need anything afterwards unless I 'want' to do 3 prophylactic rounds of chemo, onc #2 says I should be including radiation in my treatment. Confusion abounds. after much research and conversations with NIH, I fire onc #1

    12/19 - after edema (retained 22 pounds of water) and a couple of incision infections, started chemo

    1/3/12 - 2nd chemo

    1/23 - 3rd chemo

    February/March - external radiation

    4/24 - 4th chemo

    5/16 - 5th chemo

    6/5 - 6th chemo

    I now have about 3/4" of hair on my head and I have to shave my legs again. I still have occasional aches and pains, but those are dwindling and my abdominal swelling continues to subside.

    I had a 2nd post-treatment CT last week exploring some lymph nodes, I have breast ultrasounds every 6 months because I've developed fibroadenomas, and my liver and magnesium levels are not what they should be.

    Still, I feel great, sleep well, and walk the dogs frequently.

    Liz in Dallas

    I'm Susan in central NJ and
    I'm Susan in central NJ and was diagnosed wth clear cell endometrial cancer 3/28/12. I had a hysterectomy 4/02, have had 3 brachytherapy treatments and just had 5th of scheduled 6 carboplatin/taxol treatments. I am 61.
  • Mammi
    Mammi Member Posts: 3
    ROLL CALL
    Wow! Great to see so many of us here! Good luck to everyone!

    Tina Jenkins: adeno endometrial carcenoma Stage II-b 2005, radical hysterectomy 7/17/05, 3 internal radiation treatments 2005. Treated at the University of Iowa & live in Iowa.