Well, It’s Back

Fridays Child

CheeseQueen57 said:

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. 

So sorry

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

Fridays Child said:

So sorry

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.

Dr Weston’s suggestion

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. 

TeddyandBears_Mom

I wish I was gifted with the

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

I'm sorry, Susan! Making

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

Not good news

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.

Fridays Child

CheeseQueen57 said:

Dr Weston’s suggestion

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. 

Thank you.

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

CheeseQueen57 said:

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. 

I wanted to share that MD Anderson has a location in Camden, NJ—

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. 

MAbound

Uncharted Waters

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! 

CheeseQueen57

Ziva David said:

I wanted to share that MD Anderson has a location in Camden, NJ—

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. 

Thanks

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. 

BluebirdOne

Cheese!

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

Dang it CQ.  What could it

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

Sorry to hear this, CQ. Here are my thoughts.

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

Darn it, CQ

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

Update

 

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. 

TeddyandBears_Mom

Cheese, it is so good to hear

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

Always helps to have a plan

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?

Donna Faye

feeling at home

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

CheeseQueen57

MAbound said:

Always helps to have a plan

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?

DC Megace

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

MoeKay

Good luck with your new treatment plan

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!! 

 

EZLiving66

CheeseQueen57 said:

Update

 

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. 

I sure hope this works! But

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