Well, It’s Back

I got the results of my 6 month CT scan and there's a tiny, tiny area of disease on the left peritoneal area. We would not even see it but for the CT scan. Needless to say, I'm heartbroken. But I shouldn't be so surprised. The Megace was only going to work so long. So we've decided to try 21 days of tamoxifen and 21 days of Megace to start and see if the Megace receptors will reactivate. Otherwise we may just try tamoxifen. Interested if anyone has tried this regimen. Trying to get my head in the right place. Just telling a few people. My son is about to embark on a California vacation on which I'm hoping he's getting engaged so I definitely don't want to tell him the monster is back until after his vacation. I know it could be so much worse. 

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Comments

  • Fridays Child
    Fridays Child Member Posts: 251 Member
    edited February 2020 #2
    Darn!

    Darn it, I am so sorry to hear that.  Of course you want to wait to tell your son until after his (hopefully momentous) vacation!  Is this 21 days of Tamoxifen and Megace concurrently or sequentially?  Best of luck and I hope it works fast! 

  • oldbeauty
    oldbeauty Member Posts: 319 Member
    edited February 2020 #3
    So sorry to hear this, Cheese

    I thought I had some reference to a tactic for rebooting PR status, but I can't find it quickly.  I was thinking it was Metformin that had a chance to reinvigorate the progesterone receptor status that we know flags with use of Megace or Provera.  But I can't be sure of that.  I did find and reread an older article I have that talks about the efficacy of progesterone to combat endometrial cancer.  It confirmed that your doctor's approach of using tamoxifen is a standard practice when PR status degrades.  Are you on Metformin for your diabetes?  Do you think your weight gain with Megace could be a factor?  Is the weight gain because Megace is an appetite stimulant, or is it a metabolic thing that is associated with Megace?  If the latter, I urge you to talk to your doctor about switching to Provera.  If you are storing fat, and we know fat is estrogenic, perhaps a strategy to promote weight loss might be useful in combination with the tamoxifen.  From your comments on this board, I'm sure you've tried to lose the unwanted weight.  Might a consultation with a qualified nutritionist who works with cancer patients be indicated?

    I am so sorry to hear about this development, Susan.  I fervently hope you and the doctor come up with something to slow this new growth down.  Best wishes, Oldbeauty

  • barnyardgal
    barnyardgal Member Posts: 272
    edited March 2020 #4
    Darn it. I'm so sorry.

    Darn it. I'm so sorry.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    edited March 2020 #5
    Cheese, I wish you were just

    Cheese, I wish you were just saying CSN but I know you mean your cancer.  Since the board is back, tell us what has been going on.  

  • mamlicsw
    mamlicsw Member Posts: 33
    So sorry, Cheese.

    I don't post much but do read others' posts frequently so I'm familiar with the difficult path you've been on.  None of us deserve this but you especially deserve a break.  Whaat a good, loving mother you are to pur your son's happiness first.  I admire you.  Mary Ann

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933

    Darn!

    Darn it, I am so sorry to hear that.  Of course you want to wait to tell your son until after his (hopefully momentous) vacation!  Is this 21 days of Tamoxifen and Megace concurrently or sequentially?  Best of luck and I hope it works fast! 

    Tamoxifen

    It's sequentially. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    oldbeauty said:

    So sorry to hear this, Cheese

    I thought I had some reference to a tactic for rebooting PR status, but I can't find it quickly.  I was thinking it was Metformin that had a chance to reinvigorate the progesterone receptor status that we know flags with use of Megace or Provera.  But I can't be sure of that.  I did find and reread an older article I have that talks about the efficacy of progesterone to combat endometrial cancer.  It confirmed that your doctor's approach of using tamoxifen is a standard practice when PR status degrades.  Are you on Metformin for your diabetes?  Do you think your weight gain with Megace could be a factor?  Is the weight gain because Megace is an appetite stimulant, or is it a metabolic thing that is associated with Megace?  If the latter, I urge you to talk to your doctor about switching to Provera.  If you are storing fat, and we know fat is estrogenic, perhaps a strategy to promote weight loss might be useful in combination with the tamoxifen.  From your comments on this board, I'm sure you've tried to lose the unwanted weight.  Might a consultation with a qualified nutritionist who works with cancer patients be indicated?

    I am so sorry to hear about this development, Susan.  I fervently hope you and the doctor come up with something to slow this new growth down.  Best wishes, Oldbeauty

    I was on metformin before i started on insulin and prandin for my diabetes. I stopped the metformin at that point. It wasn't doing anything for diabetes and I was contemplating my surgery and you know how downhill that went. I suppose I could start the metformin again but I'm taking so many pills...  if you could find the article that supports waking up receptors I could show to my doctor and I can search. I'm sure diabetes is worse because of weight gain. And I've tried to lose weight but the Megace is hard to overcome. I really notice a difference since I've been off it. The tamoxifen actually makes me a little nauseous. Funny, I am a registered dietitian nutritionist but I did consult somebody too. She did give me some helpful tips. I will ask about the provera. 

    Thanks for the tips and best wishes. I was going nuts without this site. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    mamlicsw said:

    So sorry, Cheese.

    I don't post much but do read others' posts frequently so I'm familiar with the difficult path you've been on.  None of us deserve this but you especially deserve a break.  Whaat a good, loving mother you are to pur your son's happiness first.  I admire you.  Mary Ann

     

    They got engaged!

    Thanks for your support!  And my son and his girlfriend got engaged in the shadow of the Golden Gate Bridge. We're so happy!  We wanted to have an engagement party but my son wants me to hold off because of this damned virus. I don't know when the risk will be over. But you all take care and be safe in the mean time. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    edited March 2020 #10

    BTW, I took one dose of Repatha and my blood sugar is totally out of control. I think it's the Repatha because I'm not currently on Megace. I don't intend taking any more (there's $120 copay down the drain!). I intend to talk to my endo tomorrow. Imagine if I was on Megace too. Diabetic coma!!!

  • jan9wils
    jan9wils Member Posts: 179 Member
    edited March 2020 #11
    I am so sorry about this news

    I am so sorry about this news. I hope the tamoxifen works.

    Jan

  • Unknown
    edited March 2020 #12
    hang in there Cheese

    You'vee been through a lot, but as a true queen you have always presented us with a soldier on attitude.  Hope the new drug gives you something to smile about.  Hugs

  • Donna Faye
    Donna Faye Member Posts: 427
    edited March 2020 #13
    I am with you

    While the site was down, found out I was probably not going to be able to do the L/K treatment - doctor got the flu and now am waiting to see what else she offers. She has suggested hormonal drugs like Tamoxifen so I will be listening to see what you and your doctor decide.  Know you are happy about the engagement as it makes us happy to see our kids happy. Hang in there.

  • SF73
    SF73 Member Posts: 316 Member

    I was on metformin before i started on insulin and prandin for my diabetes. I stopped the metformin at that point. It wasn't doing anything for diabetes and I was contemplating my surgery and you know how downhill that went. I suppose I could start the metformin again but I'm taking so many pills...  if you could find the article that supports waking up receptors I could show to my doctor and I can search. I'm sure diabetes is worse because of weight gain. And I've tried to lose weight but the Megace is hard to overcome. I really notice a difference since I've been off it. The tamoxifen actually makes me a little nauseous. Funny, I am a registered dietitian nutritionist but I did consult somebody too. She did give me some helpful tips. I will ask about the provera. 

    Thanks for the tips and best wishes. I was going nuts without this site. 

    Cheese, I am so sorry to hear

    Cheese, I am so sorry to hear about your reoccurence. 

    Here is one of the few articles that talks about Metformin's impact on promoting progesterone receptor expression. Hope it helps. 

     

  • zsazsa1
    zsazsa1 Member Posts: 547 Member
    Queen, congratulations on

    Queen, congratulations on your son's engagement.  I'm so sorry that the website was down when you were getting the discouraging news of the recurrence.  We couldn't be here for you, when you have been here for the rest of us, so often.

    I am wondering, would laparascopic surgery be an option, if the recurrence site is so tiny?

  • zsazsa1
    zsazsa1 Member Posts: 547 Member
    edited March 2020 #16

    I am with you

    While the site was down, found out I was probably not going to be able to do the L/K treatment - doctor got the flu and now am waiting to see what else she offers. She has suggested hormonal drugs like Tamoxifen so I will be listening to see what you and your doctor decide.  Know you are happy about the engagement as it makes us happy to see our kids happy. Hang in there.

    Why is the L/K treatment not

    Why is the L/K treatment not an option?  Is your tumor hormone sensitive enough that it might respond to Tamoxifen?  I thought that UPSC, even if receptors were present, they weren't functional, so hormonal manipulation would not work.  This is what I was told at Yale (after I'd tried, and had side effects, on two estrogen blockers).

  • oldbeauty
    oldbeauty Member Posts: 319 Member
    SF73 said:

    Cheese, I am so sorry to hear

    Cheese, I am so sorry to hear about your reoccurence. 

    Here is one of the few articles that talks about Metformin's impact on promoting progesterone receptor expression. Hope it helps. 

     

    Thank you, SF73

    This abstract doesn't resonate with me as the one I read, but I'm glad it confirms my recollection that metformin is thought to restore progesterone receptor status.  And I note that the studies were done with medroxyprogesterone acetate, which is Provera.  Provera, my endocrinologist told me, is less likely to cause weight gain than Megace.  Best wishes, Oldbeauty

  • Donna Faye
    Donna Faye Member Posts: 427
    edited March 2020 #18
    zsazsa1 said:

    Why is the L/K treatment not

    Why is the L/K treatment not an option?  Is your tumor hormone sensitive enough that it might respond to Tamoxifen?  I thought that UPSC, even if receptors were present, they weren't functional, so hormonal manipulation would not work.  This is what I was told at Yale (after I'd tried, and had side effects, on two estrogen blockers).

    Confusion

    ZsaZsa, When we met with the pharmacologist, she mentioned that the L raises BP quite a bit and I would have to take BP every day and go to ER if high. I have had hypertension for years and asked what high was. Then she and the oncologist back pedaled and with the protein in urine wanted me to wait a week, get more BP meds and see what happened. Then she had flu last week so now set to go on 17th. You are right that the hormonal is weak defense, but they have me confused. Wonder why vaginectomy and L/K were on table if I was not good for either. With this 3rd vaginal recurrence, they seem buffaloed as to how to proceed w/o metastisis??? CT Friday may reveal more.

  • dgrdalton
    dgrdalton Member Posts: 161
    edited March 2020 #19
    Queen, am so sorry to hear of

    Queen, am so sorry to hear of your recurrence. I don't post much, but do try to keep up with you ladies. Congratulations on the good news from your son and prayera for you.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited March 2020 #20
    Cheese, so sorry to hear

    Cheese, so sorry to hear about your recurrence. This is the first day I have been able to get into the site. And, I was surprised to see others have been back in for weeks. Not sure whey I kept hitting that down message. Anyway, I hope they can find something to wipe this out that doesn't hurt you in other ways.

    Take care,

    Cindi

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    edited May 2020 #21
    3 month update

    So I went for my CT scan this week. After being on the tamoxifen/Megace regime for 3 months and the CT scan was a little worse. Not what I wanted to hear. But my doctor is convinced that it doesn't really indicate a change and wants me to continue for a couple more months. The radiologists report definitely indicates advancement so I don't know why she is interpreting it that way. I had obtained the report from medical records so by the time I saw her via video conference (she was sick) I had worked myself up so that my blood pressure was over 70. 

    What bothers me is she keeps suggesting my next option is chemo, even though I've told her multiple times I'm not interested in chemo and from what I've been reading, there are more effective options, especially for reoccurrence, than chemo. I told her I talked tonDr Weston at MD Anderson and what she suggested. What rings in my ears is although Dr Weston endorsed the tamoxifen/Megace  as first treatment she said, "But don't wait too long". Unfortunately I didn't ask her what "too long" was. I have that question in to her now. 

    I guess I'm losing a little confidence in my current oncologist because of the chemo issue. It makes me think she's not totally up to date. I could go over to Penn where my original oncologist went and although I didn't think she was the most progressive, I did see that she is publishing articles regularly unlike my current oncologist. Which tells me she is invoked in research. But I hate to transfer all my care to Penn but I will do it if necessary. Although I can get opinions from MD Anderson, it's really not feasible for me to travel to Houston (I live in Philly area) for regular care. 

    So, I've also come to the mind seat mentally that this most likely will not go away and that I can only hope to control growth. Staggering, as I know some of you know. My darling son and his fiancé are being so supportive and they want to know everything. But I'm a little sad to reach this milestone and looking once again over the edge and anticipating having to balance side effects with quality of life. 

    Thanks for listening, my dear sisters. I know you understand.