New here-Undifferentiated Endometrial Carcinoma

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Hi, just joined today. I was diagnosed with cancer on May 30. Had an internal ultra sound, chest c-ray, CT scan and two biopsies. My biopsies had to be sent to multiple labs and the pathologists did not all agree on what type of cancer/tumor I had. My cancer team has decided on UEC.

i started chemo on July 7. Taxol/carb every 3 weeks. Had a reaction to the Taxol on my 2nd round. They kept me on it but added a 2nd steroid. Just had my 3rd August 18. Toughest one yet. I was hospitalized for fever, high heart rate and neutropenia. Just for 24 hours. I now have to stay home, avoid crowds and possible sick people and can't see my young grandchildren, until my WBC is back up.

i am having chemo to try and shrink my large tumor so I can have surgery. Then will need more chemo and probably radiation.

im feeling depressed, scared and now quite ill.

One day at a time.

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  • Editgrl
    Editgrl Member Posts: 903 Member
    edited August 2017 #2
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    RB773

    Welcome, RB773.

    I, too, ended up with a diagnosis of undifferentiated carcinoma, though I went through a diagnosis of carcinosarcoma, serous carcinoma, and even the third pathology report from MD Anderson had two pathologists not sure.  One said undifferentiated carcinoma, the other said that it was considered, but the immunoprofle was inconclusive and the possibility of serous carcinoma could not be excluded.  I understand what you've gone through trying to get a conclusive diagnosis.

    I'm sorry you are going through such a tough time with the chemo.  Has your doctor considered switching to taxotere? I myself had carbo/taxol with few side effects, but some women here made the switch to taxotere, I believe, to reduce some of the side effects.  How many more treatments are you to have before surgery?

    You say you are home now.  Are you experiencing nausea? Constipation?  There is a thread called "Ladies Going Through Chemo" that details a lot of the women on this site's experiences and you might find it helpful as you go through the process.  You'll find a lot of support on this board and tons of information.  If you explore this site, you'll find many women who are surviving and thriving despite dealing with cancer.

    One day at a time is a good approach.  This is the marathon you never plan on running.

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited August 2017 #3
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    Hi RB773

    Welcome- sorry to hear you are going through such a rough time- so glad you found the group- these ladies are all so willing to listen and help- I found them after I had already completed treatment.  I hope you'll take time to look up that post Editgrl told you about.  Just copy it or type it into the search- so full of great info!  Sure hoping things get easier for you- be good to yourself- this will all be behind you sooner than you can imagine!  We're here for you- cheering you on.   (((HUGS)))

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Have they mentioned lowering

    Have they mentioned lowering the dosage of the Taxol? I've read many posts about people being sensitive to it so the dosage is lowered in order to try to get as many treatments in as planned. Hopefully your medical team is on top of this for you. You should not have to suffer from the treatments like this. If your medical team is not doing all they can to help you, maybe you have some large cancer centers near you that you could call for a consultation about the treatment and how you're handing it? Good luck to you and let us know how you're doing.

  • RB773
    RB773 Member Posts: 9
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    Thank you all!

    Thank you all for your responses! 

    Im just starting to feel a little better so my WBC is most likely increasing. I had done pretty well with my first 2 treatments but this 3rd hit me hard. I have a CT scan next Tuesday 9/5 and my DR will decide how to proceed from there. I am scheduled for my 4th chemo 9/8, but they now made an appointment for 9/12 as well. I'm thinking I will be postponed a few days.

     

    I have found that I'm handling things well until that week after chemo when I feel ill. Then I get depressed (and a bit whiny)

    i will follow up on your suggestions here. I really appreciate your responses.

    One thing I didn't mention before, I am the primary caregiver for  my husband who has MS. Complicates things a bit.

  • RB773
    RB773 Member Posts: 9
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    Update - Don't know what to think!

    Had my CT scan and met with my DR Friday 9/8. Here's what she told me: my tumor has only shrunk a little, some of my regional lymph nodes have shrunk but two have increased in size. I asked if she had any idea when I might be able to have surgery and received the 2nd shock of my life. She considers me to be inoperable and all we can do is "try to stay ahead of the cancer with chemo". 

    i asked why 2 lymph nodes are larger yet others and the tumor are smaller. She said "the two larger nodes are probably a different type of cancer cell so not responding to treatment"

    So, I asked her about alternate chemo treatments. She seemed hesitant or reluctant but said there is a drug we could add, Avastin. I pushed to try it as she wasn't offering me anything else, or really any hope.  I was supposed to have chemo that day which she cancelled and rebooked for Tuesday 9/12. I will received carbo/Taxol/Avastin all at the same time.

    Im very nervous as I've had high blood pressure for years (under control with meds) but understand a rare side effect can be heart attack.

    Does anyone have experience having all 3 of these drugs at once? Or any other thoughts or advice?

    Thanks in advance!

  • derMaus
    derMaus Member Posts: 558 Member
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    RB773 said:

    Update - Don't know what to think!

    Had my CT scan and met with my DR Friday 9/8. Here's what she told me: my tumor has only shrunk a little, some of my regional lymph nodes have shrunk but two have increased in size. I asked if she had any idea when I might be able to have surgery and received the 2nd shock of my life. She considers me to be inoperable and all we can do is "try to stay ahead of the cancer with chemo". 

    i asked why 2 lymph nodes are larger yet others and the tumor are smaller. She said "the two larger nodes are probably a different type of cancer cell so not responding to treatment"

    So, I asked her about alternate chemo treatments. She seemed hesitant or reluctant but said there is a drug we could add, Avastin. I pushed to try it as she wasn't offering me anything else, or really any hope.  I was supposed to have chemo that day which she cancelled and rebooked for Tuesday 9/12. I will received carbo/Taxol/Avastin all at the same time.

    Im very nervous as I've had high blood pressure for years (under control with meds) but understand a rare side effect can be heart attack.

    Does anyone have experience having all 3 of these drugs at once? Or any other thoughts or advice?

    Thanks in advance!

    Second Opinion ?

    I can't tell from your posting what kind of tumor analysis was done before prescribing your current course of chemo. I, also, have undifferentiated, Grade III, Stage IIIb cancer. I had a radical hysterectomy in late November, 2016, and commenced with the standard carboplatin/taxol regimen 3 weeks later. I completed all 6 rounds but a post-chemo CT scan, preparatory to radiation, revealted mets in my peritoneal lymph nodes. Others have had variations of your experience, and mine. Here's what I posted under the "New Here..." thread started by Harmony09 on August 20th. The title of my post is "Testing, Testing": if you haven't had genetic tumor testing (e.g. Foundation One), ask for it. If your tumors are large enough and in an accessible location, you may also consider a live tumor assay (e.g. Rational Therapeutics)  which is where live tumor tissue is exposed to different types of chemotherapy to see which ones work. Both, or either, will give you much better information about what you're actually working with; otherwise you're just doing a standard treatment regimen which may, or may not, be best for you. Some insurances will pay for both genetic and live tumor testing; some won't....but in retrospect I would have gladly paid for both, had I known. In my case, my genetic testing - done after a post-chemo recurrance - revealed that my cancer type is often platinum resistant. JUST what you want to hear after 6 rounds of carboplatin and taxol results in mets to your lymph nodes!  I don't have complete information about your case, but would get another opinion, stat. I don't understand the notion of 'staying ahead of the cancer with chemo' when you're not even certain what kind of chemo will work, but that's just my opinion.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
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    derMaus said:

    Second Opinion ?

    I can't tell from your posting what kind of tumor analysis was done before prescribing your current course of chemo. I, also, have undifferentiated, Grade III, Stage IIIb cancer. I had a radical hysterectomy in late November, 2016, and commenced with the standard carboplatin/taxol regimen 3 weeks later. I completed all 6 rounds but a post-chemo CT scan, preparatory to radiation, revealted mets in my peritoneal lymph nodes. Others have had variations of your experience, and mine. Here's what I posted under the "New Here..." thread started by Harmony09 on August 20th. The title of my post is "Testing, Testing": if you haven't had genetic tumor testing (e.g. Foundation One), ask for it. If your tumors are large enough and in an accessible location, you may also consider a live tumor assay (e.g. Rational Therapeutics)  which is where live tumor tissue is exposed to different types of chemotherapy to see which ones work. Both, or either, will give you much better information about what you're actually working with; otherwise you're just doing a standard treatment regimen which may, or may not, be best for you. Some insurances will pay for both genetic and live tumor testing; some won't....but in retrospect I would have gladly paid for both, had I known. In my case, my genetic testing - done after a post-chemo recurrance - revealed that my cancer type is often platinum resistant. JUST what you want to hear after 6 rounds of carboplatin and taxol results in mets to your lymph nodes!  I don't have complete information about your case, but would get another opinion, stat. I don't understand the notion of 'staying ahead of the cancer with chemo' when you're not even certain what kind of chemo will work, but that's just my opinion.

    Hindsite

    I'be got them to finally do the Foundation One testing but I don't understand why they didn't do live tumor testing and I didn't know enough to ask for it. I'm going to be really pissed if I find out I am platinum resistant too. Thanks for sharing all of this info with us