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

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Comments

  • shavilyn
    shavilyn Member Posts: 4
    "Glad" to be here
    Hi,

    My name is Shari (Bridgewater, NJ). In 2005, at the age of 42, I was diagnosed with two primary cancers: Invasive Breast Cancer Stage 1A, and Endometrial Cancer Stage 3 (with lympho-vascular invasion). My peritoneal wash came back inconclusive. Have had a TAH/BSO (uterus, cervix, tubes, ovaries), and nodes removed. I was on 6 months of mega-doses of Adriamycin and Cisplatin, followed by 6 weeks of (as they said) very strong radiation, followed by 3 sessions of intra-vaginal radiation (you ladies know...in the thick, lead-lined room) replete with Geiger counter readings. Sound familiar???? While my doctors told me that they can't give me the 5-year "yay, you're cancer-free" speech (because of the "late stage"), I am happy to reach the 5-year mark and look forward to every day I am given.

    I know that a lot of you are currently in treatment, and I send you all a {{HUG}}. With the different types of Uterine cancer, and treatments, we all walk a different journey, and yet, we don't walk alone. We all know what the treatments are like, and they stink. HANG IN THERE!
  • shavilyn
    shavilyn Member Posts: 4
    norma2 said:

    Thank you for the warm welcome!!
    Thanks Mary Ann, Amanda, Chrysoula, Lori and Ro10!!
    Appreciate your kind comments about the attitude. It really is the only thing that I have control over, my attitude.

    Today is my 60th birthday and my hair is falling out in big chunks. Everytime it happens instead of being upset I think, well if this stuff is killing my hair I hope it is killing any cancer cells left in this old body. Go get 'em chemo!!! Kill the little buggers.

    You guys have a great day!!! Again thanks for the response. I am going to buy some cool hats today. Talk again soon.
    Norma

    Embrace the bald!
    My motto was "Shower, towel, go"
  • akunzel
    akunzel Member Posts: 13
    Staging
    Surgeon called and reported that according to the new guidelines effective January 1st, I'm stage 1A. If he went by the previous staging, 1B. Either way, we caught it early! I'll find out tomorrow what we'll be doing for chemo.
  • Ro10
    Ro10 Member Posts: 1,561
    akunzel said:

    Staging
    Surgeon called and reported that according to the new guidelines effective January 1st, I'm stage 1A. If he went by the previous staging, 1B. Either way, we caught it early! I'll find out tomorrow what we'll be doing for chemo.

    Great news
    Stage 1 a is about the best news you could receive. I am so happy it was caught early. In peace and caring.
  • shortmarge
    shortmarge Member Posts: 291
    Ro10 said:

    Great news
    Stage 1 a is about the best news you could receive. I am so happy it was caught early. In peace and caring.

    Staging
    My oncologist and pathologist fought over my staging, she wanted IB and he wanted IIA. Pathologist won so I was staged at IIA just because the cancer was touching my cervix by .0004mm. Sneaky little bugger was trying to get out.

    Great you caught it early!

    MIND, BODY AND SOUL!

    Hugs,

    Marge
  • Aeaea
    Aeaea Member Posts: 8
    State 3A grade 2
    I don't have USPC or clear cell but I would guess I have some metastasis given that I found out I have uterine cancer because I landed in the ER with pulmonary thromboembolism, and cancer makes this 9x more likely, and I assume it means the cancer cells escaped, though none found in my 4 lymph nodes extracted or abdominal cavity after surgery.

    So far, the shortness of breath from PE and scariness of a pounding, racing heart have been worse than the 3 chemo treatments. But I get more energy, breathe better, and have a less-racing heart as time goes on (3 months since PTE started, it can take 6-12 months to go away), and hike 4 miles a day and go to the gym 2x/week.

    I guess my odds of survival are not so good with a grade 2 aggressive type and 3A diagnosis, sigh. What -- 50/50?

    I would love to join a support group because you can probably tell that I'm depressed and scared from the above comment. But I was very depressed by all the recurring ovarian cancer members at the Walnut Creek, CA wellness center (no one had uterine cancer). The discussions were about all the bad side effects of various treatments and who had died -- totally scary.

    I guess there aren't many people with advanced stage uterine cancer out there, and hence, less research / clinical trials to make this more of a treatable disease like breast and ovarian cancers.

    Well, I'd better sign off before I depress everyone...
  • Caradavin
    Caradavin Member Posts: 42 Member
    Aeaea said:

    State 3A grade 2
    I don't have USPC or clear cell but I would guess I have some metastasis given that I found out I have uterine cancer because I landed in the ER with pulmonary thromboembolism, and cancer makes this 9x more likely, and I assume it means the cancer cells escaped, though none found in my 4 lymph nodes extracted or abdominal cavity after surgery.

    So far, the shortness of breath from PE and scariness of a pounding, racing heart have been worse than the 3 chemo treatments. But I get more energy, breathe better, and have a less-racing heart as time goes on (3 months since PTE started, it can take 6-12 months to go away), and hike 4 miles a day and go to the gym 2x/week.

    I guess my odds of survival are not so good with a grade 2 aggressive type and 3A diagnosis, sigh. What -- 50/50?

    I would love to join a support group because you can probably tell that I'm depressed and scared from the above comment. But I was very depressed by all the recurring ovarian cancer members at the Walnut Creek, CA wellness center (no one had uterine cancer). The discussions were about all the bad side effects of various treatments and who had died -- totally scary.

    I guess there aren't many people with advanced stage uterine cancer out there, and hence, less research / clinical trials to make this more of a treatable disease like breast and ovarian cancers.

    Well, I'd better sign off before I depress everyone...

    You hike and go to the gym?
    You hike and go to the gym? Wow! I was always told that lifted depression, but maybe there are cases (such as these) where that is not true. I bet if you browse the roll call and other ares of this particular forum, you will find there are survivors and fighters who are in your area of diagnosis or close. Look for inspiration. I agree that some support groups can be downers. Maybe I have the idea of support groups wrong, but I thought it was about supporting each other, not only venting and negativity. I have yet to find an in-person support group that meets my definition. This forum is great, though, wonderful people and very understanding. Kinda makes a person want to support others, too.
  • d.lee
    d.lee Member Posts: 31
    roll call [im new ]
    hi my name is diane i was diagnoised in 3/2009 with uteran cancer stage4 i started chemo in april 2009 im still doing chemo im on doxil its really working for me my numbers are really going down there at 47 right now. at first my doctor started me on taxil,platinum but it was a really bad chemo for me i could not stay on it i had a very bad time with it .i have not put myself on the board yet i am about to do that so this is my first time talking. i live in victorville california i am 47 years old and im taking one day at a time .
  • daisy366
    daisy366 Member Posts: 1,458 Member
    d.lee said:

    roll call [im new ]
    hi my name is diane i was diagnoised in 3/2009 with uteran cancer stage4 i started chemo in april 2009 im still doing chemo im on doxil its really working for me my numbers are really going down there at 47 right now. at first my doctor started me on taxil,platinum but it was a really bad chemo for me i could not stay on it i had a very bad time with it .i have not put myself on the board yet i am about to do that so this is my first time talking. i live in victorville california i am 47 years old and im taking one day at a time .

    shavilyn and diane
    Welcome ladies,

    There is so much support and information here - I hope you both will find this site useful. Shavilyn - you talked of concern about your stage/grade. I would encourage you to talk to your doctor/s about statistics. My doc is an optimist and I'm trying to keep that positive outlook. Instead of dwelling on the 60% recurrence rate, he tells me "there's a 40% chance you won't recur!" - I have stage 3a grade 3 (UPSC) - this whole cancer thing is so scary. We are all so different. Try not to get discouraged.

    Diane, yes, you are young compared to most of us (I'm 62 - was diagnosed at 61). I'm glad you are responding to your chemo regime. Taking one day at a time is the best way to go.

    I wish both of you as well as all of us - continuing blessings, Mary Ann
  • 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.

    Chemotherapy induced Neuropathy
    Hi Lisa,
    My name is David and I am a caregiver for my wife who had a total hysterectomy, went through 6 chemotherapies and now is experiencing Neuropathy symptoms in her fore arms which were the injection sites for the chemotherapy. Have you experienced any of those symptoms?
    Sorry I see you have had radiation. However, we are in the same boat. If you are on FaceBook there is a Uterine Cancer site there also, people looking for information.
    My wife had Uterine Cancer Stage 1, diagnosed on 9 Sept. 2009, operation on 21 Sept. 2009
    During that operation a "Wash" was performed before any internal organs were removed and that was sent to the lab and the hysterectomy was vaginally extracted. Nodes were clean, the Uterus was loaded stage 1a less than 50% through the wall. The rest was clean. The "Wash" was Papillary Serous Adenocarcinoma of Endometrium Stage 3. 6 Chemotherapy session were successfully completed. However she started experiencing very tender to the touch on both of her forearms and cannot wear any watch or bracelets. Her last treatment was 1-19-2010 and it is now 2-7-2010 which is about 3 weeks. We have heard the word Neuropathy and put no creadance on it until we heard a lady mention that she was suffering from Chemotherapy induced Neuropathy. I have done searches on that and it definitely does exist. The big question is what can be done about it.
    Regards,
    David
  • daisy366 said:

    shavilyn and diane
    Welcome ladies,

    There is so much support and information here - I hope you both will find this site useful. Shavilyn - you talked of concern about your stage/grade. I would encourage you to talk to your doctor/s about statistics. My doc is an optimist and I'm trying to keep that positive outlook. Instead of dwelling on the 60% recurrence rate, he tells me "there's a 40% chance you won't recur!" - I have stage 3a grade 3 (UPSC) - this whole cancer thing is so scary. We are all so different. Try not to get discouraged.

    Diane, yes, you are young compared to most of us (I'm 62 - was diagnosed at 61). I'm glad you are responding to your chemo regime. Taking one day at a time is the best way to go.

    I wish both of you as well as all of us - continuing blessings, Mary Ann

    Chemotherapy induced Neuropathy
    Hi Daisy,
    HI to all of you! I am speaking in behalf of my wife who was diagnosed with stage 1 Uterine cancer 9 Sept. 09 and was operated on 21 sept. 09. Began her chemo on the 6th of Oct. 09. She had 6 treatments 3 weeks apart. Each and every time she would go for the treatment the nurses asked if there was any side affects other than the normal nausea. She, being Anne, told them each and every time, "no there have been no side affects that she was aware of." What we should have asked was "What are some of the symptoms?" Anne's last chemo was on the 19th of Jan 2010. Last week Anne started mentioning that her forearms were beginning to feel very sensitive to the touch and as time went on could not wear anything on her arms. She called the NP and mentioned it to her and that NP ordered an ultra sound to rule out blood clots. Also ordered Anne to take Ibuprofen and rap a wet cloth with a heating pad to help take away the pain. None of those worked. The NP never mentioned the possibility of the onset of Neuropathy. Just the other night we were watching Larry King Live and a young movie star had just dropped dead and her husband and her mother were being interviewed. The mother had mentioned that she was suffering from Chemotherapy induced Neuropathy. A lightning bolt struck the both of us. I did some googling on that and came up with some very interesting information. Come to find out it is very common among chemotherapy patients.
    Anyone reading this if you have experienced this; What medications are there that will alleviate this issue?
    a couple of sites that I have viewed:
    http://www.chemocare.com/MANAGING/numbness__tingling.asp
    http://chemotherapyneuropathy.com/cause-chemo-neuroapthy.htm
    I have searched this AMC site and have not really found too much information other than people have Neuropathy.
    Anne is doing well after those chemotherapies and is in good mind and spirit and is looking forward to walking out of this hurricane as it looses it strength.
    I salute all of you ladies who have to battle this type of cancer. I also salute all the caregivers who have supported you all.
    We have found that the doctor and nurses are great, however they are too vague in mentioning what are the side affects and things to do when an issue such as Neuropathy does come front and center.
    Regards,
    Dave&Anne Griffith
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571

    Chemotherapy induced Neuropathy
    Hi Daisy,
    HI to all of you! I am speaking in behalf of my wife who was diagnosed with stage 1 Uterine cancer 9 Sept. 09 and was operated on 21 sept. 09. Began her chemo on the 6th of Oct. 09. She had 6 treatments 3 weeks apart. Each and every time she would go for the treatment the nurses asked if there was any side affects other than the normal nausea. She, being Anne, told them each and every time, "no there have been no side affects that she was aware of." What we should have asked was "What are some of the symptoms?" Anne's last chemo was on the 19th of Jan 2010. Last week Anne started mentioning that her forearms were beginning to feel very sensitive to the touch and as time went on could not wear anything on her arms. She called the NP and mentioned it to her and that NP ordered an ultra sound to rule out blood clots. Also ordered Anne to take Ibuprofen and rap a wet cloth with a heating pad to help take away the pain. None of those worked. The NP never mentioned the possibility of the onset of Neuropathy. Just the other night we were watching Larry King Live and a young movie star had just dropped dead and her husband and her mother were being interviewed. The mother had mentioned that she was suffering from Chemotherapy induced Neuropathy. A lightning bolt struck the both of us. I did some googling on that and came up with some very interesting information. Come to find out it is very common among chemotherapy patients.
    Anyone reading this if you have experienced this; What medications are there that will alleviate this issue?
    a couple of sites that I have viewed:
    http://www.chemocare.com/MANAGING/numbness__tingling.asp
    http://chemotherapyneuropathy.com/cause-chemo-neuroapthy.htm
    I have searched this AMC site and have not really found too much information other than people have Neuropathy.
    Anne is doing well after those chemotherapies and is in good mind and spirit and is looking forward to walking out of this hurricane as it looses it strength.
    I salute all of you ladies who have to battle this type of cancer. I also salute all the caregivers who have supported you all.
    We have found that the doctor and nurses are great, however they are too vague in mentioning what are the side affects and things to do when an issue such as Neuropathy does come front and center.
    Regards,
    Dave&Anne Griffith

    Neuropathy
    Dave and Anne, I am sorry to hear that you weren't aware of chemo induced neuropathy. That should have been discussed with you by your oncology nurse and oncologist. You should have been given written materials (National Cancer Institute) about what to expect with chemo.
    Can't look backwards now. Looking forward Anne should be referred to a neurologist who specializes in neuropathy. I just finished chemo Dec.30, 2009 and have numb feet. I can't get in to see the neurologist until the end of March. They are very busy doctors due to all of the people with diabetes that have neuropathy also. The earlier neuropathy is treated the better off you will be. There are some drugs which can help with the symptoms. I think that the chemo has killed the protective lining on the nerves. If it is just numb and not burning then it is less severe but only a neurologist specializing in neuropathy will be best to say. Another interesting thing to know is that there is a strong tie between uterine cancer and colon cancer so Anne may want to proactively seek out a Colon-Rectal Surgeon to find out what type of early screening testing can be done to ensure colon cancer isn't the next battle. I know it is disappointing to learn that you weren't made aware of the symptoms of neuropathy from chemo. This is a good site to find answers from others who have battled uterine cancer and all the treatment and side effects.
    All my best! Lori
  • Neuropathy
    Dave and Anne, I am sorry to hear that you weren't aware of chemo induced neuropathy. That should have been discussed with you by your oncology nurse and oncologist. You should have been given written materials (National Cancer Institute) about what to expect with chemo.
    Can't look backwards now. Looking forward Anne should be referred to a neurologist who specializes in neuropathy. I just finished chemo Dec.30, 2009 and have numb feet. I can't get in to see the neurologist until the end of March. They are very busy doctors due to all of the people with diabetes that have neuropathy also. The earlier neuropathy is treated the better off you will be. There are some drugs which can help with the symptoms. I think that the chemo has killed the protective lining on the nerves. If it is just numb and not burning then it is less severe but only a neurologist specializing in neuropathy will be best to say. Another interesting thing to know is that there is a strong tie between uterine cancer and colon cancer so Anne may want to proactively seek out a Colon-Rectal Surgeon to find out what type of early screening testing can be done to ensure colon cancer isn't the next battle. I know it is disappointing to learn that you weren't made aware of the symptoms of neuropathy from chemo. This is a good site to find answers from others who have battled uterine cancer and all the treatment and side effects.
    All my best! Lori

    Neuropathy
    Hi Lori,
    Thanks for your support. Anne is scheduled for a CScan this Friday. chest and abdomen, to establish a baseline. I never knew it but I have neuropathy from a back surgery I had done several years ago. The surgeon had clipped a nerve in my back and my leg is numb from the knee down. Same symptoms tingling and sharp needles in the foot. What this does is make me search more for answers.
    Anne has been having Colon-Rectal every 5 years. And she is planning on having one shortly.
    I thank you for your information.
    Dave
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Chemotherapy induced Neuropathy
    Hi Lisa,
    My name is David and I am a caregiver for my wife who had a total hysterectomy, went through 6 chemotherapies and now is experiencing Neuropathy symptoms in her fore arms which were the injection sites for the chemotherapy. Have you experienced any of those symptoms?
    Sorry I see you have had radiation. However, we are in the same boat. If you are on FaceBook there is a Uterine Cancer site there also, people looking for information.
    My wife had Uterine Cancer Stage 1, diagnosed on 9 Sept. 2009, operation on 21 Sept. 2009
    During that operation a "Wash" was performed before any internal organs were removed and that was sent to the lab and the hysterectomy was vaginally extracted. Nodes were clean, the Uterus was loaded stage 1a less than 50% through the wall. The rest was clean. The "Wash" was Papillary Serous Adenocarcinoma of Endometrium Stage 3. 6 Chemotherapy session were successfully completed. However she started experiencing very tender to the touch on both of her forearms and cannot wear any watch or bracelets. Her last treatment was 1-19-2010 and it is now 2-7-2010 which is about 3 weeks. We have heard the word Neuropathy and put no creadance on it until we heard a lady mention that she was suffering from Chemotherapy induced Neuropathy. I have done searches on that and it definitely does exist. The big question is what can be done about it.
    Regards,
    David

    david
    I had/have neuropathy in hands and feet - My doc recommended B12 supplements. Check with your doc - Time is the sure cure. Best wishes. Mary Ann
  • jmnye
    jmnye Member Posts: 14

    Neuropathy
    Hi Lori,
    Thanks for your support. Anne is scheduled for a CScan this Friday. chest and abdomen, to establish a baseline. I never knew it but I have neuropathy from a back surgery I had done several years ago. The surgeon had clipped a nerve in my back and my leg is numb from the knee down. Same symptoms tingling and sharp needles in the foot. What this does is make me search more for answers.
    Anne has been having Colon-Rectal every 5 years. And she is planning on having one shortly.
    I thank you for your information.
    Dave

    Neuropathy - L-Glutamine
    Hi - I was diagnosed with Stage IIIc in March 2009. I had surgery in April 2009. I finished treatment (chemo and radiation) in Sep 2009. My GYNonc recommended L-Glutamine, an amino acid that you can get at any health food store, to prevent neuopathy. It was a miracle. It's somewhat expensive--$50 a jar, but really makes a difference. You take 2 teaspoons dissolved in water 3x a day. I started 1 day before chemo, and then continued for a week after chemo. You can take it for months or anytime. It is 100% safe with no side-effects.

    I go for my 1 yr scan next month.

    R's,
    Jane
  • daisy366
    daisy366 Member Posts: 1,458 Member
    jmnye said:

    Neuropathy - L-Glutamine
    Hi - I was diagnosed with Stage IIIc in March 2009. I had surgery in April 2009. I finished treatment (chemo and radiation) in Sep 2009. My GYNonc recommended L-Glutamine, an amino acid that you can get at any health food store, to prevent neuopathy. It was a miracle. It's somewhat expensive--$50 a jar, but really makes a difference. You take 2 teaspoons dissolved in water 3x a day. I started 1 day before chemo, and then continued for a week after chemo. You can take it for months or anytime. It is 100% safe with no side-effects.

    I go for my 1 yr scan next month.

    R's,
    Jane

    no neuropathy??
    Are you saying you had no neuropathy?? That is so great!! Did you have taxol? I think that's the one that causes the neuropathy. I wish my doc recommended L-glutamine. He just told me about B12- which I think did nothing.

    Hopefully I will not have to use it, but I will remember this info if I have to have chemo again. Best wishes to you. I hope you are NED!!!

    Mary Ann
  • Zupo
    Zupo Member Posts: 7
    Roll Call
    Hi Linda, My name is Mary and I live in Western New York, in between Buffalo NY and Niagara Falls NY. I was diagnosed with endometrial cancer March 13 2009. April 13 2009 I had a Radical Hysterectomy. May 20 2009 I started 3 brachy radiation treatments, one a week. I was Staged 1b g2.
  • smsw
    smsw Member Posts: 5
    Roll Call
    My name is Sandra. I joined this discussion group just recently when I learned that I MAY have uterine cancer. My surgery is tomorrow so, if anyone reads this, please keep good thoughts that it is not cancer.

    I am a 15 year survivor of breast cancer. I had two surgeries, positive lymph nodes, chemotherapy and radiation. I am now 71 and not at all anxious to repeat the treatments.

    I know I have many "sisters" out there who have gone through much worse than I have. I hail every single one of you even though we belong to a club we would rather not have joined.
  • Ro10
    Ro10 Member Posts: 1,561
    smsw said:

    Roll Call
    My name is Sandra. I joined this discussion group just recently when I learned that I MAY have uterine cancer. My surgery is tomorrow so, if anyone reads this, please keep good thoughts that it is not cancer.

    I am a 15 year survivor of breast cancer. I had two surgeries, positive lymph nodes, chemotherapy and radiation. I am now 71 and not at all anxious to repeat the treatments.

    I know I have many "sisters" out there who have gone through much worse than I have. I hail every single one of you even though we belong to a club we would rather not have joined.

    SMSW good luck with your surgery
    I hope all goes well with your surgery. Sorry you have had to join our site. Congratulations on being a 15 year breast cancer survivor. There are many others here who also survived breast cancer and have ended up with uterine cancer. I hope your pathology report comes back with good news for you. You will be added to my prayer list. In peace and caring. Keep the positive attitude, and take one day at a time.
  • kkstef
    kkstef Member Posts: 688
    smsw said:

    Roll Call
    My name is Sandra. I joined this discussion group just recently when I learned that I MAY have uterine cancer. My surgery is tomorrow so, if anyone reads this, please keep good thoughts that it is not cancer.

    I am a 15 year survivor of breast cancer. I had two surgeries, positive lymph nodes, chemotherapy and radiation. I am now 71 and not at all anxious to repeat the treatments.

    I know I have many "sisters" out there who have gone through much worse than I have. I hail every single one of you even though we belong to a club we would rather not have joined.

    Sending positive thoughts to you, Sandra!
    Sandra.....I am so glad that you found this site. The women on this site are incredible! I am praying that your path reports are negative. However, none of seek out membership in this "club" but I can say, I can't think of a better group of women to be associated with...compassionate, knowledgeable, encouraging, and a wealth of information that is readily shared.

    Please let us know how you do!!!

    Karen