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Well, It’s Back

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

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. 

Fridays Child
Posts: 181
Joined: Jul 2019

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! 

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

It's sequentially. 

oldbeauty
Posts: 251
Joined: May 2012

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

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

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. 

SF73
Posts: 288
Joined: Oct 2017

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. 

 

oldbeauty
Posts: 251
Joined: May 2012

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

barnyardgal
Posts: 259
Joined: Oct 2017

Darn it. I'm so sorry.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

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's picture
mamlicsw
Posts: 35
Joined: May 2019

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's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

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's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

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's picture
jan9wils
Posts: 117
Joined: Mar 2017

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

Jan

Donswife48
Posts: 326
Joined: Nov 2015

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's picture
Donna Faye
Posts: 414
Joined: Jan 2017

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.

zsazsa1
Posts: 499
Joined: Oct 2018

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).

Donna Faye's picture
Donna Faye
Posts: 414
Joined: Jan 2017

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.

zsazsa1
Posts: 499
Joined: Oct 2018

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?

dgrdalton's picture
dgrdalton
Posts: 128
Joined: Jun 2017

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's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

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's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

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. 

Fridays Child
Posts: 181
Joined: Jul 2019

It is discouraging to go through treeatment and not only have no improvement, but disease progression instead.  What does Dr. Weston suggest you do next?

Your last paragraph really resonated with me because that's where I am as well.  Some days I think I've accepted that it's a matter of trying to control it until they can't, and other days I'm just fighting that thought.  My best wishes to you as you decide what to do next.

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

Dr Weston's suggestion for the next therapy was dual therapy with femara and afinitor.  Because I already have problems with my blood sugar and cholesterol management of those would be challenging. But I'm adamant about not going on chemo again. 

Fridays Child
Posts: 181
Joined: Jul 2019

That's what my oncologist said he would probably do next. He thinks I would get along all right with that.  I guess we will hold off as long as I'm stable on the Megace, but I sure would like to see improvement.

Ziva David
Posts: 3
Joined: Jul 2016

Hi,

I'm just joining back in since , I too, have had a recurrence of my uterine cancer. It has metastasized to my lungs. My reason for posting is to share that I moved from Moffitt Cancer Center to MD Anderson. I know that none of us takes a change like this lightly. I made the decision for the 2nd opinion at MD Anderson after Moffitt wanted to give me radiation again. I went the Magace and Tamoxifen route instead. I have a follow up in July.

I thought you might want to know about the NJ location for MD Anderson. I have found through this experience that I had to follow my gut. i wish you all of the best. Laughing

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

Thanks so much but in my opinion the MD Anderson at Cooper is just a branding opportunity. Same docs as before. When I asked about getting my treatment there but managed by doc in Houston when in Houston the answer was no. Locally I think I'm better off at Fox Chase or Penn. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

I wish I was gifted with the ability to come up with the "right" words. I wasn't. And, I am at a loss at the moment. Please do what gives you the best peace of mind. Don't stay with your doctor if you aren't getting a good feeling. You have to be confident in what you are being told to do. Perhaps it is time to get the latest opinion available from MD Anderson?

Thinking of you today Cheese.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1428
Joined: Oct 2015

I'm sorry, Susan! Making these decisions starts to become a game of choosing between the lesser of two evils. That's a "game" no one wants to play. 

It amazes me that there are so many possible treatments out there, yet none have really proven to be the "one." The latest one that was on our board said chemo was not the answer but targeted therapy. 

I wish only the best for you, my friend!

Love, 

Eldri 

Donna Faye's picture
Donna Faye
Posts: 414
Joined: Jan 2017

Cheese, so sorry to hear this. As you know, am doing the same M/T as you, just into my 8th week switching every 21 days. I have a scan scheduled for early June as that has always been how we knew what was going on. So many of us have to decide what to do for the best outcome and it does make one so weary. I also understand you not wanting anymore chemo. Yet, I know how you want to be in Italy for that wedding. I am sending you all my good karma that things will get better.

MAbound
Posts: 1065
Joined: Jun 2016

My dear friend, 

you are in uncharted waters for me to have anything useful to say.  I so badly wish that treatment wasn't so hard on you that you could have better options to get you back into remission, but it's still good to see you staying feisty and setting your own terms for how you are living your life. You have a lot of women here cheering you on whatever you decide to do! 

BluebirdOne's picture
BluebirdOne
Posts: 347
Joined: Jul 2018

I am so sorry that you are having these issues. It has to be so hard for you after going through so much already, but you have the right attitude. What ever your options, we are here for you. 

xxoo

Denise 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

Dang it CQ.  What could it hurt to call Penn?  You are right about the marketing agreement with MD Anderson.  We have one of those here, but if you want MD Anderson, you go to Houston.  Dang it. Prayers my friend that you can get some answers.

MoeKay
Posts: 289
Joined: Feb 2004

Is there any chance you could have Dr. Rubin, the Chief of the Division of Gynecologic Oncology at Fox Chase, review your case and best treatment options at this point?  My childhood friend was diagnosed with stage 4, grade 3, endometrial adenocarcinoma three years ago last month.  Dr. Rubin performed her hysterectomy and has treated her since then.  She has had chemo twice and participated in a clinical trial, and is now on Avastin, which my friend assures me is not chemo, but rather an anti-angiogenesis agent.  My friend can't say enough good things about the care and treatment Dr. Rubin has consistently provided, and she always tells me how he scrutinizes every last detail of her case.  I don't know whether he only follows patients on whom he has operated, but since I believe your original gyn-onc left FCCC for Penn, it might be worth a shot to see if he would be willing to provide you with an assessment of your current treatment options. 

Best of luck, CQ. 

Tamlen's picture
Tamlen
Posts: 261
Joined: Jan 2018

I'm sorry both that you're going through this and feeling less than fully listened to, understood, and supported by your current onc. If it's possible, as other ladies have said, it might give you some relief to find a different onc -- or at least explore what others might recommend.

I don't check in very often but please know you're in my thoughts.

Tamlen

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

 

Well my friends, after much contemplation and consultation I’ve decided to make a change in my care. I had a televisit with my previous oncologist (Dr. Martin) who had moved to Penn a couple years ago and I was really pleased with how our visit went. A little like coming home.

Dr Martin and I discussed my current therapy and she had reviewed my records. She discussed in detail the new therapies (and she remembered that I liked to know the details.). She thought that immunotherapy has more proven results but we agreed had more harsh side effects. We discussed combination therapy with Affinitor and Letrozole which has had good preliminary results in Stage 2 trials and less side effects. So we decided together that I would try that therapy first. 

We had a great discussion and I’m going to switch my care to Penn, although I’ll keep my Gyn/onc at Fox Chase, Dr King, because I love her. Dr Martin is going to recommend a urologist at Penn and I’ll probably also eventually switch to a Penn GI. 


So just waiting for the medications to get approved (hopefully there’s no hitches.). I’m anticipating some extra costs. Potential side effects are increased blood sugar and cholesterol (already trying to manage these), mouth sores (I’ve heard if you take the pill in a marshmallow it helps, yum), skin pealing on hands, headache, among other fun things. Cancer treatment is never without cost. Meanwhile I’m having episodes of double vision and I have to get in to get an MRI

My son and his gal are working to find a wedding planner and are aiming for summer 2021 wedding in Italy My goal is to be well enough to attend. 

Trying to stay positive and keep my chin up. Thanks in advance for all your positive thoughts and continued prayers. 

EZLiving66's picture
EZLiving66
Posts: 1428
Joined: Oct 2015

I sure hope this works! But just having a doctor you like and can trust is a big step forward. I continue to marvel at your attitude and your relentless pursuit of the best care possible for this SOB disease!

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1675
Joined: Jun 2015

Cheese, it is so good to hear from you. It sounds like you are on the right path for YOU! Your doctor sounds amazing and the fact that she remembered your preferences for details speaks volumes. I hope this new round of medicine is kind to your body and that you don't experience all of the side effects that could happen. 

Love and Hugs,

Cindi

MAbound
Posts: 1065
Joined: Jun 2016

We can always count on you to have at your issues as they come up. I just wish they'd stop coming up! As usual, it sounds like you've come up with a really good plan for your circumstances and I'm crossing my fingers, eyes, and toes that all goes well so that you can get to that wedding! I know how you love traveling and Italy, too, and it's always good to have a goal to help you push through the hard stuff. You could be a patient advocate as a side job because you seem to be so good at doing it for yourself! Are they going to dc the Megace with this new plan?

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

Yes, I've stopped the Megace and tamoxifen now. 

Donna Faye's picture
Donna Faye
Posts: 414
Joined: Jan 2017

I do think feeling at home with your doctor is vital. And, I applaud you for finding what seems best for you.

You seem to have a good handle on all this and know I/WE are all in your corner. Best of everything to you in the coming weeks. xoxo df

MoeKay
Posts: 289
Joined: Feb 2004

I'm glad that you're heading back to your former doctor who sounds like she's on the same wavelength as you, and that she's come up with a treatment plan that looks quite promising.  I hope you have spectactular results with minimal or no side effects.  Also, fingers crossed that the Letrozole and Afinitor approval sails through your insurance company!! 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

CQ, I have always said, 'you have to love your doctor,' and you have shown that to be true again.  I look forward to hearing how this goes and pray for minor side effects.  Hugs my friend.

oldbeauty
Posts: 251
Joined: May 2012

CQ, I'm pleased to see your post; figured you were busy calling around and thinking about options and what you want.  Concerned about the double vision, tho'.  Didn't you have that once before?  Ah, Tuscany in summer, I remember it well.  I bet there are any number of beautiful places in the Italian countryside that would be spectactular.  I know you'll love it!  Best wishes, Oldbeauty

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