Uterine Stage IV B Reoccurence Vagina

13

Comments

  • evolo58
    evolo58 Member Posts: 293 Member
    edited February 2018 #42
    linmk said:

    Carbo/Taxol Success Then Cancer Reoccurrence

    Hi Fort1, Actually, I was a carbol/taxol success story. Much to the surprise of my doctors, my cancer responded very well to the chemo treatments.  I went through six cycles. I had a hysterectomy after the chemo treatments. No cancer was found, not even in the lymph glands. After surgery, I was placed on surveilance. Three months later the cancer reoccurred in my vagina and in the lymph glands surrounding it. Also a new cancerous tumor appeared near my adrenal glands. Everybody is different. Also, I'm stage IV, so statistically speaking, the odds are against me. Take care and good luck to you. Your case and outcome may be much better in the long run than mine.

    So ... your stage 4 must have

    So ... your stage 4 must have been because something occurred outside the uterus, and the chemo zapped whatever it was? But ... gosh, this disease is annoying. Inconsistent and annoying.

    This is where staging can get really, really confusing. Apparently, according to the doctors, if you are Stage 2 and have a reocurrence, you're still a Stage 2. I've read of women saying that they were Stage 2 in 2010 and became Stage 4 in 2016, and really, that isn't the case, according to my nurse. You're a Stage 2 with a reoccurence. You will always be Stage 2. And that reoccurence won't give anyone more of a break than a Stage 4B, and once you have it, you're at a similar risk to a Stage 4, even though you're still a Stage 2. Sad.

    You can be a Stage 4, on the other hand, and not ever have a reoccurence. One board member's neighbor had this situation for 25 years plus. Yet, you're still a Stage 4 ... 25 years later. 

    Too bad there isn't a "provisional" or "Stage as of last diagnosis" level. But I guess that's what NED is for. 






  • derMaus
    derMaus Member Posts: 558 Member
    #43
    linmk said:

    Exophytic Vagina Tumors

    I've been asked how I knew that my cancer was getting worse. I knew because I have two exphytic ball shapped tumors growing out of my vagina. I could physically reach down and feel them growing outwards. Gemzar/cisplatin definitely were not shrinking them. I jokingly told the doctor that I would need a jock strap if the balls grew larger. Who knows maybe I'll grow a penis too. That would be a real transformation.

    Income Benefit?

    You have a great sense of humor, so I'll add onto it: if you do succeed in growing a penis, your income will automatically increase by 42% and people will listen to you in ways they never have before. You might as well get some benefit out of all this BS  ;)  But seriously, that must be unnerving as all get out. Know that you are in my thoughts and prayers. B

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #44
    Holy crap, I just read this

    Holy crap, I just read this thread and you are a wonder woman!!  You have been through so much and you can still laugh.  I have no words of wisdom or suggestions for treatment but I want you to know I'm here along with all these wonderful ladies, supporting you all the way. (((linmk)))

    Love,

    Eldri

  • linmk
    linmk Member Posts: 58
    #45
    derMaus said:

    Income Benefit?

    You have a great sense of humor, so I'll add onto it: if you do succeed in growing a penis, your income will automatically increase by 42% and people will listen to you in ways they never have before. You might as well get some benefit out of all this BS  ;)  But seriously, that must be unnerving as all get out. Know that you are in my thoughts and prayers. B

    Ha! Ha! Ha!

    That's hilarious! I'd rather laugh about it than cry. Thanks for keeping me in your thoughts. I wonder how many other women develop these external vagina tumors. Well, anyway it is what it is.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    edited March 2018 #46
    What a spirit!

     I wish we could all get together in the same physical room instead of the internet one. Can you imagine the dark humor and laughter?

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited March 2018 #47
    MSI treatment

    Hello Linmk:

    My biopsy just came back positive for endometrial adenocarcinoma again.   The tumor is attached to my rectum, bladder, vaginal cuff area.   I just saw the surgical oncologist today.   They are going to test my pathology to see if it is reactive to something called MSI.   If it is, I can do immunotherapy to help shrink the tumor.   I will know in a week if that is possible.   I will probably still need surgery, but this could help the surgeon in reconstructing my rectum.  Maybe check this out too.

    My best to you.

    Kathy

  • evolo58
    evolo58 Member Posts: 293 Member
    edited March 2018 #48
    Kaleena said:

    MSI treatment

    Hello Linmk:

    My biopsy just came back positive for endometrial adenocarcinoma again.   The tumor is attached to my rectum, bladder, vaginal cuff area.   I just saw the surgical oncologist today.   They are going to test my pathology to see if it is reactive to something called MSI.   If it is, I can do immunotherapy to help shrink the tumor.   I will know in a week if that is possible.   I will probably still need surgery, but this could help the surgeon in reconstructing my rectum.  Maybe check this out too.

    My best to you.

    Kathy

    Hope everything works out OK.

    Hope everything works out OK. You have been through so much over the last decade or so!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #49
    Kaleena said:

    MSI treatment

    Hello Linmk:

    My biopsy just came back positive for endometrial adenocarcinoma again.   The tumor is attached to my rectum, bladder, vaginal cuff area.   I just saw the surgical oncologist today.   They are going to test my pathology to see if it is reactive to something called MSI.   If it is, I can do immunotherapy to help shrink the tumor.   I will know in a week if that is possible.   I will probably still need surgery, but this could help the surgeon in reconstructing my rectum.  Maybe check this out too.

    My best to you.

    Kathy

    I'm sorry to hear about your

    I'm sorry to hear about your biopsy and where the tumors have been found, Kathy.   You are, of course, in my prayers

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    #50
    Kaleena said:

    MSI treatment

    Hello Linmk:

    My biopsy just came back positive for endometrial adenocarcinoma again.   The tumor is attached to my rectum, bladder, vaginal cuff area.   I just saw the surgical oncologist today.   They are going to test my pathology to see if it is reactive to something called MSI.   If it is, I can do immunotherapy to help shrink the tumor.   I will know in a week if that is possible.   I will probably still need surgery, but this could help the surgeon in reconstructing my rectum.  Maybe check this out too.

    My best to you.

    Kathy

    I am so so sorry!  I pray

    I am so so sorry!  I pray that the MSI shrinks the tumor so the surgery is not too invasive!  Good luck !

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #51
    Kathy, So sorry to hear this

    Kathy, So sorry to hear this news!  Please come back and let us know what the next steps will be. I sure hope it works out so that your tumors shrink to minimize the surgery.

    Linmk, wouldn't it be great if you could challenge your docs about this MSI treatment and it ends up being the thing that works for you?!

    Thinking of you both and sending strength and prayers your way.

    Love and Hugs,

    Cindi

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    edited March 2018 #52

    Oh Kathy! I too am so sorry to hear your endometrial cancer has come back after so many years. I just wanted to tell you that I will keep you in my prayers. I also was diagnosed back in 2009. Stay strong....I fear a reoccurrence too....

    Lori

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #53
    Oh, Kathy,

    what can I say.  I so admire the strength you have shown in the past  and hope it serves you well as you have to face future treatment. 

  • derMaus
    derMaus Member Posts: 558 Member
    #54
    Kaleena said:

    MSI treatment

    Hello Linmk:

    My biopsy just came back positive for endometrial adenocarcinoma again.   The tumor is attached to my rectum, bladder, vaginal cuff area.   I just saw the surgical oncologist today.   They are going to test my pathology to see if it is reactive to something called MSI.   If it is, I can do immunotherapy to help shrink the tumor.   I will know in a week if that is possible.   I will probably still need surgery, but this could help the surgeon in reconstructing my rectum.  Maybe check this out too.

    My best to you.

    Kathy

    Mismatch Repair Genes

    Ah crap, Kathy, I'm so sorry to hear that! At least it's all in the same neighborhood, so to speak, and not showing up as distant mets -- but that's poor comfort. When they do MSI testing, they check for Microsatellite Instability to see if any of your four "mismatch repair", i.e. quality control, genes are broken. Those genes weed out bad copies of new cells but, if they themselves don't work, viola! Cancer. The breaks can be just random (i.e. somatic) or inherited (i.e. germline). If they're inherited, then you have Lynch syndrome. My original path report showed my cancer had a high incidence of MSI, so I was sent off for Lynch testing which was, in turn, positive.

    Microsatellite instability is actually positive in that the prognosis is a little better (although "better" is relative in our world) and, most importantly, the FDA has approved Keytruda/immunotherapy for any cancer with MSI markers. So you actually want your tests to come back that way, if at all possible. I'm going to cross my fingers and pray for that outcome for you. Meanwhile, was there any discussion of stereotactic (e.g. CyberKnife) radiation? My recent experience with it was pretty painless, although how well it worked remains to be seen at the next PET scan. Prayers, B

  • SF73
    SF73 Member Posts: 317 Member
    #55
    Kathy, I am so sorry to hear

    Kathy, I am so sorry to hear about your news. I hope that MSI testing will create a few viable alternatives. Wishing you the best of luck. I am so in awe of you for trying to make sure your family lives a normal life and continuing to enjoy your life as a mother & wife even at the face of these challenges. You are a true inspiration. None of this is fair. 

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #56
    Kathy, I'm so sorry it's back

    Kathy, I'm so sorry it's back. Praying for you!

  • Jairoldi
    Jairoldi Member Posts: 221 Member
    #57
    Also sorry to hear

    Wishing you all the best as you battle the beast again.

  • linmk
    linmk Member Posts: 58
    #58
    Taxol/Avastin or Clinical Trial Phase I?

    I have been recovering from bronchitis during the past week. Recommendation: (Don't let relatives with coughs visit you.) I'm stocking up on antiviral masks for future visits.

    This week I'm going to talk to the investigational clinical trial people at MD Anderson about the possibility of participating in one of their phase 1 clinical trials. I won't be convinced unless I know that all of the mice in the mouse studies had their cancer cured. I'm not overly optimistic about participating because I don't want to suffer through yet another type of treatment that will do nothing for me except cause bad side effects. The alternative is to be treated by weekly taxol/Avastin chemo sessions. I wish there was a way that the doctors could tell if a treatment was going to work before undergoing it.

    I asked the doctor about Parp inhibitors and other specific immunotherapy drugs but she said that they weren't approved for uterine cancer. Also, she said i only had a few estrogen receptors on my tumor, so I'm not a candidate for hormone therapy.

    I read a NY Times article about a small group of women who had convinced doctors to give them an immunotherapy drug, even though there was no reason to think it would work, but it did, and now there are clinical trials for the drug. I am wondering how does one persuade a doctor to give you an immunotherapy drug that is not approved for your type of cancer, unless you're related to the doctor?

    This is the article link https://www.nytimes.com/2018/02/19/health/ovarian-cancer-immunotherapy.html?mabReward=ART_TS2&recid=10mbUDeKa0L2lXFUyRFmSt153V2&recp=2&moduleDetail=recommendations-2&action=click&contentCollection=Smarter Living&region=Footer&module=WhatsNext&version=WhatsNext&contentID=WhatsNext&src=recg&pgtype=article

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    #59
    Linmink - immunotherapy drugs

    Recent studies are indicating that immunotherapy drugs may work on people who have lots of mutations.
    Have you done full genomic profiling on your tumor (eg. through Foundation One) so you know how many
    mutations you have?

    Unfortunately, they don't know why some people respond and some people don't. They are now starting
    to give people two immunotherapy drugs or one immunotherapy drug plus chemo or radiation if you
    read the articles in the medical journals.

    Immunotherapy drugs actually work against  the immune system, by disabling proteins that protect all
    our cells from being attacked by the immune system.  One of the risk factors is that these drugs will remove
    the protein from our normal cells as well - here is one of the key side effects listed from Opdivo in the
    ads they run in women's magazines-

    "Opdivo is a medicine that may treat certain canacers by working with your imune system.
    Opdive can cause your immune system to attach normal organs and tissues in any area of your body
    and can affect the work they work.  These problems can sometimes become serious or
    life-threatening and can lead to death.  These problems may happen anytime durirng treatment or even
    after your treatment has ended."

    I would look up the manufacturer's websites to get more information on various immunotherapy drugs,
    like Keytruda or Opdivo or the drug you want to try.

    I personally believe that patients should fully investigate all these drugs that doctors recommend,
    as they don't really explain what they do and what some of serious side effects can be.  I believe
    that these proteins exist on our cells for a reason and that all the drugs they are trying to develop
    disable key processes in our body that are there for a reason- to protect us. That would explain
    why these drugs can attack normal cells as well- immunotherapy reminds me of chemotherapy-
    the drugs can't distinguish between normal cells and cancer cells.

    If you really want to pursue one of these drugs, I recommend you ask your doctor to apply for the
    drug for you as a "compassion case".  This way the manufacturer will cover the cost.  Considering
    there are not trials for endometrial cancer and immunotherapy, they might be interested in seeing
    how you respond.   What drug are you looking to take? Is it a new immunotherapy drug?

    Remember, you have to target much more than your immune system to stop cancer. I believe
    this is why they hav not had better results with these drugs, which are incredibly expensive. 

    There are excellent supplements that boost the immune system- the medicinal mushrooms are
    known to be the best - Maitake D fraction, Shitake, Chaga and Coriolus (turkey tail mushroom).
    I've been using these supplements for over 3 years now and have remained in remission.

    Besides boosting your immune system, you have to address the front end- what is making
    cancer grow in your body in the first place.  That requires a full analysis of your health and
    lifestyle. Alot of the changes that need to happen aren't addressed by cancer drugs.

    Regards,
    Takingcontrol58

     

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #60
    Tough situation

    I’m sorry you’re having to go through this. Doctors prescribe off label all the time. I don’t know what compels some to do it. I’ve been trying to get my doc to prescribe Metformin, a rather low risk drug, forever and she flat out refuses. If the risk/ benefit works out why not?  I guess just keep hitting them with what have you got to lose?  

  • linmk
    linmk Member Posts: 58
    #61
    Metformin Prescription

    I have diabetes, type II. I do my best to keep tight blood sugar control. When I asked for metformin, my original family doctor prescribed too low of dose. One needs at least 1500 mg to even make a slight dent in decreasing blood sugars. I resorted to ordering generic metformin from an Indian drug company to increase my dose. Most generic metformin is not as consistent in action as the name brand Glucophage. It was only last year that I was able to get a new doctor and my new drug insurance company to agree to give me the name brand. I think it helped that my MD Anderson oncologist had done studies on treating cancer with metformin and chemo. She was not the one who prescribed it though. It was a new general practioner at a new clinic that came through for me. She agreed with me that generic metformin can act inconsistently in controlling blood sugars.

    I ordered my metformin from alldaychemist https://www.alldaychemist.com/glycomet-sr-500.html

    CheeseQueen57, we're both in tough spots. I hope that you're doing well. I appreciate  you taking time to respond.

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