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Tamoxifen and megace v. Tamoxifen only (Recap of Lost Posts, Topic Created by paris11 on Jan 11, 2019)

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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

paris11

Jan 11, 2019 - 12:10 pm

Hello dear friends,

I have been taking tamoxifen and megace for forty months.  The stage 4. uterine cancer is stable.  I would like to stop the megace and just continue with tamoxifen.  Are there any women who are only taking tamoxifen?

 Thank you.

Connie

 

CheeseQueen57

Jan 11, 2019 - 12:48 pm

Interesting

I saw my doctor yesterday. I’ve been taking Megace for a year and it’s been very effective. I asked her about adding tamoxifen and she said there was not enough evidence to do that. The way I understand it the tamoxifen enhances the estrogen receptors and hells the Megace work  Therefore, you couldn’t stop the Megace and just take tamoxifen but I might be wrong  

 

paris11

Jan 11, 2019 - 3:55 pm

Hilarious Cheese Queen!

Hilarious Cheese Queen!

My oncologist said it in reverse.  The megace strengths the tamoxifen.  I see him in a few weeks.  I will let you know his response.

 Thank you,

Connie

 

Pennielane

Jan 11, 2019 - 5:05 pm

clean scans thanks to megace

My dr identified my recurrence in Aug 2017 and I began taking Megace. The recurrence was in my lungs, over about ten months multiple spots had increased in size and number (none big enough to biopsy). After I started taking Megace the spots started shrinking and in April 2018 I had a clean scan. Those have continued since. My big fear is that I'll run up against efficacy, but for now, I keep taking the Megace. I take it in pill form, 200 mg daily, and have had few side effects. Hope this helps! 

 

Denise66

Jan 12, 2019 - 12:19 pm

I’m sorry to hear of your

I’m sorry to hear of your recurrence. When were you initially diagnosed?  What stage and grade were you? 

 

Pennielane

Jan 12, 2019 - 7:27 pm

I had surgery in july 2015.

I had surgery in july 2015. Labs were staged at 3c. I then had cisplatin with radiation, followed bycarboplatin and taxol. I tolerated it all very badly. I’m grateful that Megace is effective and easily tolerated . I did join weight watchers because I gained weight. That helped, I’m down twenty pounds and watch everything I eat. 

 

Armywife

Jan 15, 2019 - 4:38 pm

Ladies,

Can y'all share what kind of uterine cancer you have/had?  I asked about megace and tamoxifen at my last appointment and the doctor said neither were indicated for my kind of cancer.

 

CheeseQueen57

Jan 15, 2019 - 5:49 pm

Type

I had stage 3c, Grade 3 endometrioid cancer. when I reoccurred the doc said that although my tumor was hormone sensitive she doubted that Megace would work because of my high grade and age. But miracle of miracles it has been working for a year. She wanted me to start another chemo that had only had a 20% chance of working. I laughed. No more chemo for me. Megace is rather low risk except for weight gain (about 20#) and increased clotting risk but I was already on Eliquis. Rather be fat than dead. Was pleasantly surprised it’s working. 

 

MAbound

Jan 15, 2019 - 7:12 pm

Endometrial Adenocarcinoma

Stage 3a, Grade 3. ER and PR receptors were 90% positive although ER were strongly so and PR were moderate to weak. I was started on Metformin before Megace and that's supposed to strengthen or reactivate ER receptors.

 

Armywife

Jan 16, 2019 - 11:06 pm

Interesting!

I also had endometrioid endometrial adenocarcinoma, Stage IVB, Grade 2.  Was Megace or Metformin prescribed to either of you, MA or CQ, as a preventive for recurrence, or was it given after recurrence?  I'm sorry I can't keep everyone's timelines straight. I'm also fuzzy on my ER and PR - I've asked about them but they've not gone into detail.  I was post-menopausal when diagnosed, and my cancer was described as related to endometriosis, which I never fully understood either, except that my mets were local and bits were found on the outside of the uterus, in one of the tubes, and two fragments in a cul-de-sac.  There was chronic, acute inflammation on the outside of the colon, but that was benign.  Surgeon said it looked like endometriosis had exploded in there.  I never knew I had it. I had the Lynch testing (unclear)  and was determined to be MSI-H.

 

MAbound

Jan 17, 2019 - 9:15 am

Megace & Metformin

The Metformin was started in the middle of chemo because I pushed for it given that I had been pre-diabetic for over a year before my Ca diagnosis and that the ADA recommends Metformin for pre-diabetes to prevent progression to diabetes. My BGs were also really spiking a lot with the steroids, so that helped me make the case for getting it prescribed. My PCP at the time was totally clueless about endometrial cancer and quite resistant to talking about it. It was actually her PA that took care of me as regards the Metformin and B12 shots. He should have been my PCP. I got a new PCP when he quit her practice.

I was started on Megace as a preventative measure about a month after I finished RT by my original gyn-onc who was treating me like I was his daughter with my diagnosis..i.e. throwing the kitchen sink at it. His daughter is a pathologist and his absolute pride and joy, so when I was resistant to having radiation therapy, she was invovled in the back and forth about it when Megace instead of radiation was an option being discussed. It was Moekay's post about origin, myometrial invasion, and lymphovascular invasion that eventually helped me to go along with the recommendation for radiation and compared to that I had no problem taking Megace, too.

My new gyn-onc at Dana Farber says that taking Megace for prevention is an old school practice and discontinued it last September when I moved to MA and switched to him for follow-up care. Megace is recommended for treatment for advanced stages (3 &4) as well as recurrence though. He is a lot younger than my previous gyn-onc. He's also discontinued checking me with CXRs, CTs, and lab work. Newer practices lean toward avoiding the risks like blood clots and additional exposure to radiation unless there is reason to suspect a recurrence. It makes sense, but I think my old doctor was who I needed when I needed him and I am grateful for his "old school" practices for my particular circumstances. I worry a lot more since I've been off of Megace and something may be brewing that nobody is sure about at the moment, so I'm probably heading for more testing anyway. 

There is a lot of focus on Megace's potential side effect of causing blood clots, but I've read that that is actually a rare side effect, so I don't know why it's held up so much as a reason to not take it for prevention when you have a late stage, high grade diagnosis. It's effects on blood sugar and blood pressure control and weight gain are of more concern in my book. Aside from those issues, I felt really very good while on it. I never slept better or had such an overall feeling of well-being compared to dealing pre-menopausal hormonal ups and downs.

I'm hoping that if I now end up having a recurrence that Megace will remain an option for me that will work like it's working for CQ. I'm not sure how well it would work for other types of  uterine cancer that aren't of the hormone driven variety, though.

 

CheeseQueen57

Jan 17, 2019 - 9:51 am

Megace

Thanks for the thorough run down, MA. I too had prediabetes before treatment and really spiked with the steroids during chemo but neither my oncologist, PCP, or endo would give me metformin and I continually begged them for it. I spent half of my career working for a pharma company that makes insulin So I know diabetes. 

Glad to know the Megace clotting issue is rare but because I already had a stroke....I’m on Eliquis already so I hope that’s enough. But the Megace and weight gain has really raised my blood sugar and blood pressure and finally my PCP gave me Meformin but I think she needs to titrate up from 500 mg. I refuse to do fingersticks. Frankly, my oncologist barely gave me Megace. Her first recommendation was chemo on my reoccurrence. I wish I had known more about Megace when I finished treatment but there was no discussion of it when I finished treatment. In my last visit I asked about adding tamoxifen and was told there was not strong evidence to do that. My CT scans have been extended to once every 6 months although I get labs and see doc everyb3 months  my labs do not include CA 125 which has never been a good indicator for me  

Now I’m contemplating surgery to fix the ureter blockage problem. Am I a good surgical risk?  Who would comprehensively know that?  I feel my care is so fractured no one sees the whole picture. Throw in a Prolia shot, which my world reknown urologist didn’t even know what it was, even though one of the side effects is UTIs and I‘m more disturbed. I guess you’re really on your own but most of us sadly don’t have all the info we need. 

 

MAbound

Jan 17, 2019 - 10:18 am

Copy Drs.

One thing I do is copy all of my doctors on any tests I get done whether they want it for their records or not. I want them all in the loop of what's going on with me. Having a "team" of doctors is not all it's cracked up to be because it does fracture the care you receive. It's ridiculous how our specialists are afraid to step on our PCPs toes to give us advice and care on issues like diabetes and B12 that they see as not being their area of responsibility when it actually has an impact on our cancer care so it should be. They talk the talk of holistic care, but don't walk the walk. It's so frustrating!

 

MAbound

Jan 18, 2019 - 9:06 am

A thought

As to surgical risk, I wonder if your surgeon could get you a consult with whomever would be doing your anesthesia first. He's the one who'd have your life in his hands during surgery and would be a good judge as to whether or not it'd be safe for you. He'd probably appreciate having time to get all the facts earlier and more thoroughly than from just looking at your chart right before the procedure.

 

CheeseQueen57

Jan 17, 2019 - 6:36 am

After

s reoccurence. Wish it had been prescribed after treatment. I may not have reoccurred 8 months later. 

 

paris11

Jan 17, 2019 - 10:20 am

Hi my friends,

Hi my friends,

I am totally confused.  My oncologist in Chicago recommends both Tamoxifen and megace.  Dr. Brian Solmovitz in Miami also recommends Tamoxifen and megace.

cancer is such a challenge!!

Connie

 

MAbound

Jan 17, 2019 - 10:53 am

I don't blame you

Different doctors have different philosophies and practices, so treatment is all over the place. And the science keeps changing. That's why we keep checking Dr. Google to our doctor's consternation! I wonder if alternating between Tamoxifen and Megace helps mitigate the side effects of either?

 

paris11

Jan 18, 2019 - 9:32 am

Good insight MA.  When I am

Good insight MA.  When I am on megace I feel as though I am starving.  Tamoxifen gives me a break from the ice cream!!

Connie

 

barnyardgal

Jan 19, 2019 - 8:27 am

Interesting about menace. I'm

Interesting about megace. I'm on Letrozole but asked about the menace. I'm ER receptive and not PR at all, so Dr said megace was out for me. Fortunately, I haven't had any side effects. My gynecologist oncologist and thyroid Dr talked and I'm on methimazole for my hyperthyroidism for now. Ultimately I'll have to decide on surgery or radioactive iodine but for a year or so I can just take medicine. It worked quick and my thyroid numbers went normal in one month. I did have minor side effects like dry skin and constipation so I'm on a lower dose. I'm tempted to do the surgery for the thyroid but I did have major problems with some of my blood levels after surgery and had to stay longer so I don't know if that's a good idea. At least I don't have to make decision yet.

 

Lulu7582

Jan 18, 2019 - 1:00 pm

Megace and Tamoxifen

Good morning ladies,

Have to add my experience with megace and tamoxifen. Was put on them alternating every 3 weeks as my first line treatment after the mets were found. Doc boosted all her patients on this treatment responded well and she had one pt on that combination for 5 yrs with no further progression. Well my experience was not positive! Megace made me extremely hungry and I put on weight and then when I was on the tamoxifen I had the worst bone pain specifically in my left leg where there were no mets. It was so bad that after the second 3 weeks of tamoxifen I stopped the pills 2 days early and started the megace. The leg pain went away in 2 days after stopping the tamoxifen. Then I had a PET after 4 cycles and my cancer had significantly worsened so chemo was recommended. Each of us have different experiences and our cancers so unique. My grade at the time was grade 2  and when I had the bone biopsy the pathologist stated moderately to poorly differentiated. Anyway that's my experience. 

Lulu xo

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