Team ILC Warriors
Comments
-
I hate that little meno-pot, Claire! I have never had a soft tummy and now......I do! I have been blaming it on less core work while undergoing reconstruction, but I'll be happy to add tamoxifen to the list of causes.
I have been on it about 18 months now.Anybody know if Femara will also contribute to the roll?
Just back from PS and final pre-exchange visit. Decided to go with the 255 gummies. Erring on the side of smaller rather than larger. I hate feeling......bosom-y. Excited, but kind of bummed when he told me to expect 2 drains. Ugh! I thought I would never see a drain again.
0 -
I have been on femara for a year+ and so far no weight gain or pot belly.
0 -
Kestralgurl, those damned drains...I had to have one for my lumpectomy (yuk, for 3 weeks) and I thought it would never get below the required cc. amount. I am expecting them for my BMX/recon coming up soon and not looking forward to them either. Although I was able to practice yoga with one in, and still hike, etc.
Off to do tons of crunches to try to keep the flabby belly away. Ridiculous, this cancer tx and post tx crap.
Hugs
Claire
0 -
This may be helpful for us
http://www.ajronline.org/doi/full/10.2214/AJR.07.38270 -
Claire,
Definitely meno...I started getting the same thing and mentioned it to my MO and she said that meno completely changes where the weight is distributed. I started gaining and the weight started to accumulate in my upper abdomen. It was like having a second set of foobs. I'm buckling down again and walking briskly for 30 min a day (min) and counting calories. So far lost about 5 pounds. Not seeing it yet, but at least the scale is. The MO also said it is harder to take off after meno too. Fun times
0 -
Hi Claire -
Inside-Out hikes? You're a BOSS. You inspire me. As soon as I'm not so sore and get the lympedema arm under control I plan to hit the gym. I'm taking he citrus pectin too but in capsules. Are you taking a liquid or powder? Have you heard that that's a better form?
0 -
Kaydee,
Which brand of the capsules do you take? And how many a day do you take?
Thanks you so much...I am going to the Block Center, next week I am going to ask him about this, and how much we should take. I will report back.
Sharon
0 -
Hi Ladies, hiking the Canyon is like mountain-climbing backwards. And I'm still paying for it today--really sore but bikram yoga helped yesterday (ouch--but better).
ARGH about middle-age meno spread. I've always had a superflat stomach and now when I do head to knee sitting pose in bikram I have noticed multiple rolls...never before seen. I hoped I could avoid this, but apparently I'm not immune but I'm going to fight hard to keep the middle thickness at bay. Does anyone know if this eventually goes away? I mean, when your body gets used to the hormone changes after a while?
I don't know about BOSS, kaydee but I am super-stubborn. Always have been, much to the chagrin of my parents bless their hearts! I think that helps--I told myself that NOTHING was going to take me away from my wilderness hikes, river trips, and yoga, and so far it hasn't.
I am so far just mixing the pectin in warm water and letting it sit about 30" then gulping it down (ick). I was sent the jar of powder by my NO, so I'm just taking what he gave me. It's expensive and I'm supposed to take 3 scoops a day, but I've been taking 1.5 to make it last longer. I've already spent $1000 on the NO visit (with tests, etc.) and can't afford a lot of the supplements he recommended because they are so expensive! One supplement he recommended to get my copper levels down a bit more would have cost me $500 a month.
We do what we can do, I guess.
0 -
Sharon,
I take the PectaSol-C modified citrus pectin. It's made by a company called ecoNugenics. I'm taking about 15 grams a day - which is a lot of pills for me (6 capsules 3 X a day.) But no icky taste. Just the hassle of remembering and being disciplined about it. After I get through chemo I plan to cut back to about 5 grams a day.
Claire - I really feel you on the $$$ for the NO. I spent about the same amount and I didn't even get the tests you did which would have been helpful. So I'm taking all the suggestions about herbs and supplements and then buying them in health food stores instead of the NO's office. There's a considerable mark-up at the NO.
0 -
Hi
Checking into to see how everyone is doing? Hope you are enjoying the holiday weekend. Its chilly here but the sun is shining! Thanks for sharing the info from your NO docs, its so helpful.
I keep seeing posts from younger and younger women with ILC, I thought I was too young at 44, wrong! Breaks my heart. There is a poster named Cris, she has questions I cant answer as I didnt do chemo, I have invited her to post here as I know so many of you can help answer her questions, she is so young. Makes me mad!
I have been doing pretty good, still fighting the demons in my head on taking the tamoxifen. I see my OBGYN on Tuesday, she I know is going to give me every test available but I also know she is going to tell me to take the PILL!! I just cant seem to force it down.
How many of you had your ovaries removed? If so at what age did you do it? How do you feel about it, good decision or poor one? And if so did it do you still take your pill whichever it is?
HUGS to all, I have missed all of you. xoxoxo I worked in the yard today and kept thinking of you all, hope you all are well.
0 -
Lemon, I had my ovaries out so I could go straight to an AI and skip the tamox. For some reason the tamox scared the living daylights out of me. But, in addition, my mother had ovarian cancer and my aunt had endometrial/uterine cancer, my ILC was stage III and I was 48 and perimenopausal. We have no family history of heart disease.
It has been a good decision for me, in that I have one less thing to worry about (ovarian cancer) and the surgery also cleaned up a massive mess I had down there of scar tissue from my daughter's C-section birth. I also had some huge fibroids in my uterus, and those are now gone. So, I no longer have chronic abdominal pain (from the scar tissue) and I no longer have to pee 20 times a day (from the fibroids and from my bladder being glued to my abdominal wall).
The downside is being hurled into super-double-plus-menopause overnight. It is a real double-whammy when you get surgical menopause and the AI on top of it. You go from being fairly normal to suddenly having ZERO estrogen. There is a huge thread on here that has been going for years and years, called "I want my mojo back," which pretty much sums up the problem right there. Most doctors don't even mention these things, whereas I bet you almost anything that they tell men about to have their prostates messed with that it will affect their sexual functioning. However, there ARE ways around that, and I am finding that it has gotten much better lately. But it is a shock to the whole system, no doubt about it.
0 -
I jumped on this thread to find out how lemon68 is doing (haven't crossed paths w/her in a while--hope you are well girlfriend!), but since you mentioned ovary removal Momine, I have to ask: Did you do ovarian supression first? I'm doing that now, and just wonder what the point is (and having to go in for monthly shots--not fun!), given that my onc. doesn't want me to have a period ever again, so ovary removal might be in my future anyway. I've got my implant surgery coming up in August, and am wondering if I should push for the ovary removal then too. But will that be even more of a shock to my system? I'll have another conversation w/my onc. at my upcoming appt. on the 6th.
My biggest issue w/ovarian suppression, plus tamoxifen (FWIW, I started OS a month before tamoxifen; SE stayed the same [didn't get worse] when I started the pill) is not getting deep sleep! I wake every one to two hours with a hot flash. Those don't really bother me, but this lack of sleep is starting to weigh on me.
0 -
Rene, I have had some minor sleep issues as well, but they have mostly resolved.
I don't know what the difference is between the suppression and the ooph, medically or in terms of SEs. IOW, I have no idea why they keep the ovaries but then put them out of commission chemically. Because of the ovarian cancer history, removal seemed like a better choice for me.
0 -
Hi wonderful women! thank you for sharing. You have brought so many questions to light for me thank you. I have a question and i Am afraid to google a thing and have gotten great advice from many of you to stay away from google. (And I am). I was under the impression that I didn't have the ovary concern b/c I don't have the brca1 or brca2 gene . What am I missing? I am progesterone and estrogen positive. So does this indicate a concern for me? I appreciate any advice. It's not as if am trying not to educate myself, I just feel that you all are my best source for first hand, straight forward, but sensitive delivery of information.
0 -
Justjulie, my understanding is that i didnt have to have a hyterectomy because Im brca negative and if you are brca positive you could get breast cancer or ovarian/uterine cancer. However I am er and pr positive so if the chemo had not put me in menopause than we would have suppress the ovaries from making estrogen. Its 2 different things brca positive could give you ovarian cancer. Er positive means estrogen feeds our breast cancer so we want to stop our body from producing estrogen. And after menopause we take meds to stop our cells from taking or feeding off of estrogen. You wont ever stop all of estrogen production but there are ways that will help such as dietand exercise. hugs
0 -
Momine-
That is what I am scared of the double whammy overnight and my sex life coming to an end. I know that somehow this high estrogen has got to be stopped but it doesnt seem there is a easy way. Doesnt seem fair after all we have already been though. I do have 2 cysts on the left, they bother me about every other month. I had a uterus ablation so I have been period free 18 wonderful months. I am also scared of weight gain. Thank you Momine for sharing.
RENEE!- Funny I was just on your thread reading the other day, I should have said hello. I am confused as to why they would be doing the tamoxifen and the OS? I see my OB tomorrow morning and we will be having a conversation about all of this. I am so glad to know you are doing okay but need to get some Good Sleep! You are tougher than me I just cant force that dang pill down. Felt awful taking it and I just wanted to feel like me again. You were always the tougher of us Ohio girls. I saw your Avatar and felt a HUGE Smile, I hope the kids are well, I will share what I learn tomorrow. ((HUGS))
Hi Julie
Welcome to the thread. Because of the high estrogen receptor we are trying to cut down or eliminate the estrogen that fuels the cancer. Taking the tamoxifen or another AI after menopause does this, but taking out the ovaries also is a way to cut out the estrogen. Thats my unscientific way of explaining it. So the concern at least for me is not ovarian cancer as much as it is now to starve the cancer so if it considers returning it wont have the fuel it needs. I am sure others can explain it better than me. I was to start mine on May 8th, I have only taken 7 pills.. I am not doing good at all. Where are you in your treatment? Usually after rads or chemo/rads we get started on hormone therapy. Although I do read alot that many women take it and have no side effects so dont let me scare you.
XO
0 -
Just as a side note, I had terrible bone pain during and after chemo. Ive had terrible te pain. But I havent had any side effects from my arimidex. I have had hot flashes since my mastectomy and chemo but they arent any worse on my Ai and no bone pain either. healings to all
0 -
lemon68, you are a tough gal too! IDK, my libido was already in the crapper before BC, so I guess I don't have the same concern about some of the SEs. I'm still taken aback a bit why the hell I got BC in the first place, so I'm doing whatever I can to prevent recurrence.
Since I didn't do chemo, my onc said one of the benefits of chemo to early stagers that are positive ER, PR is the menopause it causes. That's why she put me on ovarian suppression. But, your body produces estrogen elsewhere as well, which is why I'm also getting tamoxifen.
Momine, thanks for the feedback. I will keep hope that things will get better. Played volleyball for the first time this season, and had multiple hot flashes during it--I'm thinking to myself REALLY?! This is what I got to look forward to? I was negative for both BRCA tests, but still am concerned about family history of cancer, including cousin who got ovarian cancer in her 40s (and passed, unfortunately). So, I wouldn't be sad to see my ovaries go.
0 -
Melmcbee. Thank you for your explanation. I never thought of that or even imagine I ever would have to.
Lemon68,
I am sorry you are not doing well with the meds. Is it the SE's? I have just been to my surgeon. He said my node had 4mm of cells lined up , but not in a mass. He said my 2nd node only had 2 or 3 microscopic cells and the 3 rd had nothing. I go to onco on Monday. My surgeon said there are new reports out saying that taking more nodes is questionable. He is going to talk to my onco about it at their weekly meeting on thurs. so I know nothing really or do I? Someone please give me a silver lining
0 -
Renee- I saw my OB today, I was so nervous which I have never been in the past just answering all the questions made me feel like I was reliving it all. I am having a ultrasound of my ovaries on the 17th to check on my 2 cysts on the left. If there is any change she will remove just one ovary. She is also going to do measurements of uterus lining etc, she said on tamoxifen this will be done once every 6 months. Due to my uterus ablation she said I wouldnt have the warning signs of trouble so she is going to keep a close eye out. But she did say if the tamoxifen ruins quality of life its my choice on whether to take or not. She feels removing both ovaries is too harsh on the body with SEs at my age, she said one will also not be pleasant but not as bad as both. I asked about the suppresion and she said she doesnt do that and that I have had enough hormone altering drugs already. If the lining of uterus or anything suspicous pops up then its a total hysterectomy. I am going to try again and take it and really give it more time and see how I am. Sorry about your hot flashes I have never had one but I am sure they are coming for me! Seems we could talk to 10 Docs and get different answers.
Julie- Did he say the cells were IN or Near the nodes? I had isolated tumor cells Near the nodes but not in them. Big difference. There are also micro cells, I am not sure what the difference is between those and isolated, If someone knows please share. And your right you dont know any facts yet so dont go to the darkside in your mind! Silver lining? You are alive and well and you caught it early and are getting rid of it. I know it doesnt seem like much but think of all the women walking around in worse shape and dont know it. You know and your treating. I know your scared, we have all been there, hell I am still scared but you will find a strength you didnt know you had.
0 -
Hi, Ladies,
I have some nice news...my MRI that I have to admit, I was a wreck before (sorry, but I think scans will always cause mega anxiety for us) was all clear! Hope that gives inspiration, I know when I read good news about others, I feel happy, hopeful, too.
Re ovaries, here's my experience: I had a hysterectomy in 2008, unrelated to BC - to remove an enormous fibroid. (Maybe not so unrelated...I'm convinced that these things are driven by too much estrogen, a sort of hormone imbalance, but this is not scientific, just a hunch.) I kept the ovaries because that was the prevailing advice at the time - that ovaries afforded some protection against heart disease and bone strength even as we age. Then came BC in 2010 and I went on tamoxifen. My onc did a blood test to test hormone levels after I'd been on T for a while and it came back with estradiol levels that were through the roof! Seems that T can do that in some cases, fool the ovaries into thinking there's not enough estrogen so they go into overdrive. Just what we need, more estrogen. So the drs gave me a choice: chemical suppression or more surgery (oh, also had a unimx in july 2010.) Was sick of surgery so opted for chemical suppression. Did six months of lupron injections but learned that it wasn't recommended to stay on them longer than 2 years. Lupron is a potent drug and as I read more about it I decided that I wasn't sure I even wanted to last out the 2 years. Also a few gynecologists in the onc department quietly suggested removing the ovaries since I was already 51, why continue getting the shots, why not have an ooph and not have to worry about ovarian cancer since I was needing to suppress them anyway. I had the surgery soon after and it was really simple surgery, laparascopic, little recovery. I continued on T for another 6 mos and then switched to Femara this past January. The immediate horrible menopause they described never happened.
To those of you who are scared to try Tamoxifen, don't be. I had almost no SE's (except for the crazy estradiol rise and some joint pain.) Femara is a bit more potent. I am having more hot flashes than I had on T and the joint pain and stiffness is more significant. But in both cases, I find it to be manageable. I take 2 omega 3 tablets and 3000mg of vitamin D3. I cannot stand the hot flashes but find that if I avoid certain foods and limit stress (hah! please let me know if you've figured that one out...working mom w four kids....right....) they are lessened. I try to exercise and find that swimming and walking are magical. I have changed my diet dramatically since BC. No proof that there's anything to this, but why not? What if it does help? (I love David Servain Schreiber's book, 'Anti-Cancer' and eat mainly as he recommends.) More than that, i've shifted to organic produce and eat little meat and dairy. Mostly plant based and try hard to limit the sugar. I am not a fanatic and do go off this occasionally thinking that the stress of being a fanatic might cancel out the benefit
I am also careful about cosmetics and cleaning products, using paraben and SLS free products. Also about BPA in plastic. You can read more about this on this website, breastcancer.orgI think that much of this story of staying on these drugs (unless SE's are severe) is a matter of determination. I'm determined to stay on Femara and just try to find ways to adjust to it. Femara is supposed to be the best AI for ILC and almost any SE beats BC in my book.
Hope this is helpful. Nice to think of all of us out there pulling for each other. I like that. My virtual support group. I actually don't have one here, so you really are my support group!
Thanks, Shari
0 -
Sorry, like my post wasn't long enough, i realized that I forgot to mention a kind of important point. Mojo!
Mine was keeping Renee's company in the crapper since about age 45, though when it does get awakened (rare) I do get into it. I find that once started I like it as much as ever, I just don't feel much like initiating. Husban's interest is less also as we get older, so this hasn't been much of a problem but I do miss that energy. I can't even blame this all on BC. I think it might have gone this route as we aged, either way.
There can be an issue of dryness, but that seems to be surmountable.
0 -
Shari,
Thanks for your post. It actually addresses many of my concerns.
I'm almost 48, and stopped periods along with chemo last summer.
I'm on Tamox since December with minimal SE. I was advised to remove ovaries and switch to AIs for a couple of reasons: blood clots (I have to take daily blood thinner injections for as long as I'm on Tamox), and being 100%ERPR+, it makes sense to eliminate as much estrogen as possible; plus like you said, Femara seems to be more successful in treating ILC.
But reading about all those terrible SE of AIs makes me want to stay on Tamox for longer then I probably should.
So I was happy to read about your experience, about being able to manage those SE.
Right now I'm healthy and would like to stay that way. Well, I'm recovering from a very painful exploratory lung surgery, but it is a "happy pain".
I think I posted before about this plan of undergoing the extreme open lung surgery to remove tiny lung nodules for examination. (I was paranoid that it could be related to "C"). They happened to be totally B9.
Like most of you sisters, I adjusted my diet, cut back on amount of meat, dairy, eliminated processed food.
As for supplements: fish oil (from sardines and anchovies only), vit C, vit D, about 600-800 mg of calcium citrate with magnesium;
I also take Metformin off label (2x850mg) and Zometa every 6 months to protect my bones (osteoporosis runs in my family, plus it may have also mets preventive benefit).
I stopped Melatonine as it affects CYP2D6 enzyme and therefore - tamoxifen metabolism. (I had this test done and a dr/scientist advised to not take it as it is unknown to what degree it may affect efficacy of tamoxifen).
What else can we do?
Maggs0 -
Hi all!
It's been awhile since I've posted. Thank you all for your continued insight and understanding of this beast that is cancer.
Welcome, Julie. I'm sorry you have to join us but you'll find a lot of comfort and support here. I hope you feel free to vent and scream. This is the safest place in the world because we all "get it!" Gentle hugs to you.
Kim, what SEs were you experiencing with the tamoxifen? I'm almost done with week 3 of tamoxifen and, thankfully, have had no noticeable side effects. I haven't even had an increase in hot flashes or night sweats. They remain the same as they were pre-cancer diagnosis. I did have some very vivid dreams at the onset but I was also taking melatonin. I have since stopped the melatonin and have not had any weird, strange dreams. Maggs' note about melatonin and tamoxifen metabolism was something I had never heard or read. Everything that I had ever read about melatonin use and breast cancer was positive. Even though I'm no longer taking melatonin, I'm going to be doing a little research just out of curiosity. I will, unfortunately, be switching to another manufacturer at the end of this month because Mylan has temporarily stopped production of tamoxifen. I'm keeping my fingers crossed for an easy transition. No sense in stressing about the unknown right now.
As far as the ovaries go, I still have mine. No chemical suppression. It was never really discussed as a possiblity. I'm a little concerned because my maternal grandmother had and passed from endometrial cancer and her mother had and passed from ovarian cancer. My mother has colon cancer with liver mets but is 4 years from diagnosis and is NED. :-)
I am going to see my OB/GYN a week from this Friday for my yearly physical and am wondering what I should ask him. I am just shy of my 45th birthday. Are there any tests or scans that I should request from him versus my MO? Any suggestions would be greatly appreciated! I feel a bit lost.
Sending hugs to all my ILC sisters and to ReneeinOH (welcome to our thread!)!
Amy
0 -
Hi ladies,
How is everyone...interesting discussions on this thread lately. I was intrigued by the melatonin-tamoxifen mention, since I take 3 mg every night to sleep. Here is what I found, contrary to Magg's info:
Here is Sloan-Ketterling's melatonin link: www.mskcc.org/mskcc/html/69298...
Here is an article they cite specifically on Tamoxifen and Melatonin:
"Lissoni P, et al. A phase II study of tamoxifen plus melatonin in metastatic solid tumour patients. Br J Cancer 1996:74:1466-8.
A prospective, open-label evaluation of 20 mg melatonin and 20 mg tamoxifen in patients with metastatic solid tumors other than breast or prostate. Subjects were refractory to previous treatment, had poor performance status, or had no alternate treatment option. Twenty-five patients (M:F 10:15, aged 38-81, 6 unknown primary, 4 melanoma, 4 uterine cervical, 5 pancreatic, 3 hepatocarcinoma, 2 ovarian, 1 non-small cell lung) were administered melatonin at bedtime and tamoxifen at noon, regardless of estrogen receptor status until progression of disease or death. Patients received CT or MRI scan every 3 months and routine labs every 14 days. No complete response was documented. Three partial responses (12%) ranging from 5-8 months were recorded (melanoma, uterine cervical, and unknown primary). Stable disease, average duration 6 months, was noted in 13 patients (52%) while remaining 9 patients (36%) had progressive disease. No toxicity related to melatonin was reported. Lissoni et al. suggest that neuroendocrine treatment with 20 mg of melatonin and tamoxifen may be feasible for refractory solid tumors other than breast or prostate, but additional research is necessary."And one more from the U of MI
http://www.uofmhealth.org/health-library/hn-1509008#hn-1509008-interaction
I've been taking tamox for over a year with no real problems. I am highly ER+--had dozens of fibroids removed from my uterus in two separate surgeries, and they are estrogen-driven, too. Interesting also to consider that ILC tends to move into soft tissues, like stomach, uterus, and ovaries, more than IDC. My gyno NP just did the CA 125 test on me because with my ILC and + nodes she agreed I was high risk. Thank goodness it came back very low. We will probably test every year, she says, plus I have to ask for an US every year for my annual check up, before she even does my annual exam. I'm glad she's so thorough.
Found out yesterday I have my breast surgery dates set: June 24 for the nippple delay, which is an in-office procedure, then July 3 for the BMX immediate recon. I'm apprehensive, but know that with my dense breasts even after chemopause, and my five "clear" mammos before that, that didn't reveal my 2 c. tumor on my right breast, I can't take the chance. Just upset that we have to mutilate ourselves to buy ourselves a bit more "security" which as we all know comes with no guarantees. Feeling kind of down today.
0 -
Hi again!
I also read all the positive articles about cancer and melatonin and started using it.
And it was only when I had my CYP2D6 testing done when the dr (he is Professor of Medicine, pharmacology and oncology), discussed my tamoxifen metabolism, endoxifen levels and possible drug/food interaction that can inhibit cyp2d6 enzyme and therefore alter efficacy of Tamox.
Since there is not enough research on that interaction, he advised me to discontinue melatonin for now, as long as I'm on Tamox. Tamox itself is just inactive pill. We need a certain enzyme to turn it into its active form - endoxifen, which "competes" with our estrogen in attaching itself to hormon receptors on cancer cells. By taking other drugs (some antidepressants...) and supplements that are "using" the same enzyme, cyp2d6 is being inhibited by them and therefore we may alter tamoxifen metabolism. That doesn't apply to ER/PR+ that are on AIs, as Aromatise inhibitors are not metabolized in the liver by the same enzyme. (Totally different mechanism).
This is why I stopped melatonin for a time being.
I guess, we all have make our own decisions, as there is so much information out there, some very contradicting...
Maggs0 -
Claire....Please try not to fear so much for your surgery! ...I know it's hard! I had the exact surgery this past January and LOVE my new breasts and tummy tuck...wasn't easy recovery, but I am lucky to have a hubby who pampered me and took care of my drains.
It was all definitely much easier than I had thought it would be!
Maggs...do you know of any supplements that melatonin would compete with? thanks!
0 -
Maggs!
Wonderful news!!! I was following your lung biopsy thread.i know that b9 was music to your ears and just what we all wanted to hear!!!
Shari I am truly happy to hear your MRI was clean.
Lemon68,
Once again you are right. I am here and praying they did catch it early. I am trying to find the strength. You sound so strong. All of you do! The doc said In the nodes. He sounded positive when he said it wasn't a mass but a small line of cells. You have armed yourself with so much information and talk about everything so freely that I feel blessed to be connected with you all. As Shari said you all are my support. THANK You!0 -
Hi ladies. I just wanted to stop by and tell you how excited I am because tomorrow morning is my exchange surgery. I cant wait to get these tes out of me. I have been in so much pain. I feel positive that tomorrows surgery will be the answer to my prayers and I will be pain free and can go on with my life. I just wanted to tell you how thankful I am for all the help. Healing hugs to all.
0 -
Mel, way to go! I love the positive attitude! You will breeze through your surgery. I just know it! Prayers for speedy, pain-free healing. Gentle hugs. Sweet dreams!
Shari, congrats on your clean MRI! We are all happy dancing with you!
Have a good night all!0
