Arimidex - Coping with the SE's
Comments
-
Junif - I haven't tried Vitamin E, but I have some and will be trying it starting today - thanks
0 -
I keep wanting to blame sunscreen. I had a basal cell carcinoma about 10 years ago and have worn sunscreen religiously after dx. Then we find out that avobenzone is an estrogen imitator and bad for us. I've tried the zinc oxide sunscreens and it feels like I'm wearing crisco. If the sun is so bad for us, why aren't physicians pressuring to control carbon emissions.
0 -
Christine...so did my Mom...but they were little tiny brown football shaped pills and by recess I was burping Cod liver oil...can't eat cod to this day. Gotta say though, never had a cold or got sick!
As for the flu. they say it's much worse this year LOL...me either although DH is snortin'.
0 -
Linda...I have been on Arimidex for 11 months and I get cold flashes all the time. During menopause I rarely had hot flashes either. Weird stuff all these meds.
0 -
Linda, I wish I knew how to post a link which would enlighten you and others who are having those "Awful Hotflashes"!
My oncologist told me that there have been several studies done, which prove that "Hot flashes reduce the risk of breast cancer!"
Google it and read for your self. Now I am not saying that it applies to everyone, because by now we KNOW that we are all individuals and not two women are alike...that everyone is affected differently by BC, yet, is it coincidental that many of us who are ER+ did not have hotflashes during menopause?
We kept all that estrogen in our body. So my point is ....If you are finally getting those Hotflashes, it can only mean that the little "Pill" is doing its job!
Now I am wondering is it working for ME???? No hotflahses before and none now! I mean NOT even one, just freezing all the time.
Something is wrong!
You also mentioned Vit E! My oncologist told me NOT to take Vit E or C! I am going to see her on the 14 of Jan and I will ask her to clarify that and also about "SOY". I have been reading labels on all my food and supplements one way or another mention soybean oil, soybean letchin. Not as a main ingredient, but as other ingredient. Also someone mentioned "caramel color"..what is wrong with that?
As if all the other things we have to worry about are not enough, now even caramel color has become an issue.
Mena
0 -
Mena, I thought I had gone through menopause already before I was diagnosed (diagnosed at 54), I had a few hot flashes, but they were mild, then this.....???? Hot flashes on steroids!
0 -
Hey Mena. I wonder, too. I'm another with no menopause hot flashes and none now (starting 6th month of anastrozole, with 2 months previous before MX/Diep recovery.)
My aches and pains are more obvious than before the AI--not too bad, fortunately. But I'm creaky enougth to feel that means the AI is working. Has anyone seen any studies about AIs not doing what they are supposed to....lowering the estrogen levels?
0 -
Well I am wanting to find out if others are experiencing mood changes, irritable, while on Arimidex...I really didn't want to read this entire thread to see what's out there. Lol!
So is anyone else experiencing mood swings, more irritability since taking Arimidex??? I certainly have...I am on 2 anti-depressants/anxiety meds now, but still am suffering with being a GROUCH!
0 -
Chris...i also have had no hot flashes and my aches and pains are bearable...almost non-existent after 10 months on Arimidex and one month on Anastrozole. I haven't read any of those studies (if they exist) but as has been said many times...all meds affect us all differently. My MO nor did the literature ever mention that so I feel I have enough to worry about without that. LOL
0 -
Saw my MO this week and asked her if there was any chance an AI wouldn't work w/o presence of hot flashes. She said "no." So one less thing to think about. And had my one-year mammo in the remaining breast today, and all is okay. So I am telling myself the AI is doing what it's supposed to (so far!)
0 -
Chris13, where did you read that? Thank goodness it's not true or I would really be in trouble! LOL
Mena
0 -
Chris...congrats on the mammo results...sure it's working
0 -
I've been taking Vit E just a regular supplement and I still had/have hot flashes with menopause and with Arimidex.
0 -
My Onc has told me more than once as has my surgeon that it is very unlikely to get the same type of cancer in the other breast. The Arimidex if to suppress the cancer cells that may metastisize.
0 -
I'm about ready to change oncologists. The few times I saw her last year, her answer to side effects was telling me it was all in my mind, or it's aging, or she'd try to give me a prescription for yet another medicine. So, I started seeking other more natural solutions. I found a Naturopath who specializes in breast cancer (lots of supplements, good diet, exercise) and I'm back to my Acupuncturist. I rarely have a hot flash now, get warm once or twice a night. I still don't sleep very well and I don't have the boundless energy I once had. Oh, and slight weight gain and yes, mostly in the tummy (I exercise 1.5-2 hours a day so it's not all aging though some might be). So, I saw my onc this week and she didn't even want to hear about Integrative Medicine except to verify that no one was giving me estrogen. She said that sometimes women's bodies "acclimate" to the AI and the side effects just go away. I can't blame her, she's western trained and all she knows is the party line and pharmacueticals. I honestly think the changes I've made have helped the side effects ameliorate. I know of two oncologists who work with integrative medicine that I'll be investigating. I mean if Dana Farber has an entire center for integrative therapy for cancer patients could it all be smoke and mirrors? I think not.
0 -
Nancy--you said it all in the phrase in the 'party line.' Is there any source you are using to find MO's who use integrative medicine? Do you think the naturopath has helped? I'm so tired of no one in the medical field wanting to listen. My MO actually has a Phd in nutrition and has done studies with tumeric and her only comment to me was that I should stay at my ideal weight (I'm not). Exactly why do we pay these people?!?!?
0 -
Well, OF COURSE, complimentary/integrative approaches can, and do, improve quality of life for most people (with or without cancer). Any doctor that doesn't recognize that, and encourage their patients to look at a wide range of options, is not doing their job to treat the whole person!
0 -
Junif, My acupuncturist told me about one womann who is right in the same town where I see him. The Naturopath told me about the other and he's in Greenwich, CT which is about 2.5 hours from here. I guess this second one has written a book which I'm going to get a copy of as soon as my addled brain ca remember the name. At Dana Farber I had a consultation with the director, a Dr. Rosenthal, who is very well-known in the field. He said he thought I was on the right track except... He said that life like a three legged stool and I was lacking in the area of spirtuality, so that's my next quest. More meditation? Tai Chi? Qi Gong? Haven't figured that piece out.
Livestrong program starts at the end of February. I suspect they dont' have a lot to offer me as I'm already well-versed and doing lots of exercise, I eat well and know my nutrition. I'm hoping they have a Tai Chi class I can learn from, maybe a personal trainer that can give me some time and it never hurts to exercise in a group setting. I miss that from when I worked at the University of CT and took classes every day. Livestrong is through Hartford Hospital so I'll stick with it until the three month Livestrong program runs its course. Maybe I can lose the damned 4 pounds I've put on in the last year. It stubbornly doesn't want to come off.
Yes, the Naturopath has helped greatly as has acupunture.
Try Googling Integrative medicine practitioners.
0 -
NancyM
I haven't been on this thread in a long time, just wanted to echo some of your thoughts, re: Integrative Medicine. I had all my treatments at Dana Farber, am now in my 6th year on Arimidex. Would NEVER have been able to do this without acupunture, and it was my oncologists at DF who suggested I try it to relieve joint pain. Also get a monthly massage. I live too far away from DF to go there except for my now yearly check-ups - see my acupuncturist ( monthly) and massage therapist ( trained by Tracy Walton in Boston) locally.
If you haven't read David Servan- Shreiber's AntiCancer:A New Way of Life, you might find it informative.
The supplements I take are too long to list, mostly learnd about them reading this thread when Lowrider ( who has since died) started it. Tho' this thread is long, most of the answers are here. I stopped posting when it became too repetitious, but just wanted to pop in & wish you all the best, and good work finding a Naturpath & an acupuncturist. I never met with Dr. Rosenthal at DF, but I'm familiar with his work. He's an authority on all this.
0 -
I would love to see a list of supplements. My health insurance will not cover a Naturopath, so I get this sort of info second-hand. I have no idea if I'm on the right path.
I do have Sarvan-Schreiber's book and have really worked on the diet but am just fumbling around with these other areas - like supplementation. I recently added Turkey Tail (based on the advice received from a "friend of a friend" with BC seeing a Naturopath) and Tumeric life force in addition to Vit D3, various amino acids (for neuropathy, which is healing). Quit dairy, gluten-free, eating over a 1lb of greens a day (I couldn't do this without a Vitamix, btw)...just as much, or more fruit. Organic free range eggs, chicken, though infrequent. Salmon, in season, though it is far too expensive to eat every day.
Like you Nancy- my MO just responds to my joint pain in my fingers with "let's try another medicine." My response, "Oh, there is another way to be tortured? No, let me battle the torture I know." I started wearing wrist splints worth $20 and they worked!
0 -
Sunflowers, my mom was treated at DF years ago for lung cancer. She had wonderful care. Has your onc recommended you stay on Arimidex for 10 years?
0 -
Hello everyone, just a little update!
Went to see Oncologist yesterday for the second time. I had made a list of questions I had for her, but of course I forgot to ask her all of them.
Q. Why did she have me stop taking Vit. C & E as extra supplements.
A. both vitamins may cause weight gain
Q. Why she told me to stop using Restoril to sleep
A. it causes weight gain. I prescribe it to women who during chemo are losing weight and can't sleep. If you can't sleep, take Melatonin!
Q. Since she is in charge of the NYS Medformin study, could she tell me if I could benefit from it
A. NO! Only women who have or had chemo can partecipate in the study.
Q. I notices that in basically all that I eat and some of the supplements I take, SOY LECHITIN, SOYBEAN OIL are
mentioned as an Other Ingredient. Is this goin to hurt me?
A. NO!!!!! Don't worry about it.
Q. I am having so many S/E on Anastrazole but the one that it's bothering me the most it's how it is affecting my
mental health ie. Mood Swings, anxiety, Depression, Memory Loss and Insomnia
A. I will switch you to Tamoxifen. But you must get checked by your Gyno every six months .
Q. I don't think that Swithching to tamoxifen will be too much of an improvement for me. The side effects are basically the same. with the exception of bone loss so, I think I will stay on Anastrazole and give it a little more time .
A. Ok, NO problem!
Q. Doctor, can you please go over with me one more time what % of recurrence do I have?
A. Without the pill, 37% of the cancer coming back somewhere else in your body, with the pill the % is cut by 50%!
I don't understand such an high %! Stage 1a, grade 2, 0 nodes, no need for chemo or radiation and yet my risk even with the pill is 18.5%
My BP went up to 140/90 !
Mena
0 -
MENA - those percentages for recurrence, for you, don't make sense, I agree. I'm at 16% using an AI and with a Oncoscore of 39. (Recurrence with Tam 27%, with chemo 18%, with AI, another 2%.) No node, ER+ PR+(barely), Her2neu - 1.4 cm.
0 -
Its the oncotype score that is driving the numbers. Basically if I understood it right scores under 18 benefit from AL's and in most cases the risk of recurrence is cut in half, 18-28 is a gray area and called indeterminate, may or may not benefit from chemo in addition to AL's, over 28 definitely should have chemo in addition to being on AL's. If you think about it a person with a score of say 33 would have a one in three chance of recurrence if they didn't take the AL's and AL's reduce that chance further. My score was 13 and I believe my oncologist said with AL's it drops to a six percent chance of recurrence. I would google oncotype scores for a better explanation.
0 -
ptdreamers,I never had an oncotype test done. The oncologist said it was not necessary and based the % on the results from the pathology report. Do you know the score you had that made your grade a 2? Mine was 7 . I am 90% ER+ and 5% PR+ , HER2 -
Mena
0 -
MENA - When you say "7," are you talking about the Nottingham Score to determine Grade? I'm only answering your question because your presumably IHC tests for ER and PR and Her2 are identical to mine. My Nottingham score was an 8 out of 9. A "7" would be Grade 3, so since your profile says Grade 2, maybe you are talking about something else? You can be a grade 2 or 3 and not need chemo, though it is less likely if you are a Grade 3.
0 -
Hi Mena,
I think that your onc erred on the high side with your recurrence score. Obviously, it is not an exact science, but check out the site called Cancermath.net. You can plug in your stats and they give you a recurrence score. I have a later stage than you and am ER+/PR- as well; my onc said that with chemo and AIs, I now have a roughly 12% chance of recurrence. You sound like you have a fine onc so maybe she sees something else?
Good Luck! beau
0 -
Out of curiosity I looked up my report to see the ranges, because I am a grade 2, and my score was a 7. It said a 6 or 7 on the Nottingham is a Grade 2, 8 or 9, is a Grade 3.
Mena, I think your onc may be giving you a % based on Adjuvant Online!. That 37% sounds like that. It has been said the AdjuvantOnline over estimates risk. Cancermath.net and also Predict.nhs.uk (in England) do a risk calculator and those % are lower. They are all interesting to look at.
0 -
Went back a checked my oncotype test and it said with five years of tamoxofin the recurrence rate is 9%. Assume that also translates to other AL's. Lee is right the risk calculators are all interesting to look at. In the end it still will never tell you whether you are one of the nine who will or one of the ninety one who won't.
0 -
The cancermath.net seems like it gives "average" scores to me. It gives me a much lower chance of recurrence than Oncotype does. For one, it doesn't consider the amount of ER PR receptivity. Lee, thanks for correcting me....for some reason I thought 7,8,9 were Grade 3. My bad.
0
