Life on aromasin
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@Shayne, I got the Osteo-K at the Naturopath's office, but it is cheaper online at the mfr. site: http://www.nbihealth.com/p-10-osteo-k.aspx, The Zyflamend Nighttime is available at the Vitamine Shoppe, but I wasn't feeling up to drivng so I ordered it at Amazon, every place I looked, it was the exact same price.
@kayb, thanks for sharing your experience. I figure I'll give this Aromasin the ol' college try like I have the other stuff, and hope for the best.
@dogsandjogs, I had bladder repair surgery 1 year ago because my bladder prolapsed pretty bad after being on the Tamoxifen for not even a year, so I get the bladder problems. Your muscles need estrogen to retain their ability and you just can't help it when you have none. Good news is it worked like a champ, they have a new procedure and install a shelf vs the sling you see the lawyers talking about on TV commercials.
This is probably too much info, and I apologize in advance for saying it, but my urine and BM's have a different color and they smell since I started the Aromasin. That is weird. I switched to taking it in the morning with breakfast and the pains were gone more by bedtime, so I'll stick with that for awhile. I wake up every 1-2 hours and only sleep about 5 hours max since I've started it as well. Even last night when I didn't hurt so much.
The 4th and last month I was on Femara, my hot flashes pretty much quit. I had one quick hot and sticky one night before last, but it hasn't repeated itself.
I will add that I used to eat what I thought was pretty healthy, before the BC. Since reading "Anti-Cancer, a New Way of Life" and working with, and being educated by, my Naturopath, and reading everything I can get my hands or eyes on, I eat a lot better now. I do yoga 2x a week, ride my bike and have been working out with a trainer occasionally. My trainer's wife is an Oncology Nurse, so he doesn't get mad at me on wimpy days. We just adust it down to my capability that day. I refuse to quit. So these Aromasin SE's are just that. I don't take any other Rx and have no other health issues to work around.
Hope everybody has a good Monday.
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Sleep is an issue with this med. Taking it at nighttime, I am up every couple of hours. Taking it at dinnertime, I am up til all hours of the night with loads of energy, doing chores, etc. Taking it in the morning I fall asleep more easily (although it is still not easy) but I have night sweats. This is strange as wouldn't you think it would keep a steady dose for 24 hrs.? Otherwise why not do it in divided doses?
Still experiementing with this.
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i have had insomnia since my twenties, off and on. The past 3 days on this med, ive slept better, maybe by an extra hour - which usually is about 6hrs. Taking it in the morning. Havent noticed anything yet......day 3
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Just wondering if you ladies are doing a Gluten Free diet? Ive been reading and changing up my diet since my dx, and this is on the list. Ive already cut it out, and feel pretty good, gut wise. No bloating. But thinking it might be a good thing to continue, being on this med.
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Not gluten fee, but vegan. Started 7 months ago. Feel great--
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Im working toward vegan.........not sure I want to give up meat yet, but eating only organic chicken.... also feel really great! And have lost a lot of weight......kind of a bonus, wasnt really trying to. My green smoothies every morning really energize me!
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Well I've been on Aromasin for a month now. These past few days the same kind of cough I had with Famara began to raise it's ugly head. I'm just so frustrated. Last night I took the prescription antihistamine they gave me for the exema breakout that happened after the coughing stuff. Well It worked I have had no coughing all day, but I really can't live on these antihistamine they make me soo tired.
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I am doing the happy dance for Aromasin, had my 6 month mamo today, and all is FINE!!! so it makes the side effects that much more tolerable
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I'm having my 2 year mammo Friday sure hope all is fine too! Wish me luck!
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Congratulations Ginger
That is indeed very good news!0 -
Shayne - I feel I eat pretty well - not much red meat at all. What do you think has contributed to your weight loss?
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Ginger - Congrats!!
Mybee - mostly this cancer-stress diet im on, LOL!! (I dont recommend it) I was on WW when I got dx, and had lost 10lbs. Then stopped counting points as I had enough to deal with, and went for comfort foods, but still kept my big salads and homemade soups..... When I went to get weighed at my post surgery appt with MO, I had lost another 4lbs! I was shocked, as hubby and I went out to dinner every night when I was in for my week long treatment in Phoenix. I thought for sure Id gain it all back that week! I really think stress burns a lot of calories. Havent been to the gym since my surgery besides a spin class.....and also walking my dogs....but thats it. I can tell ive lost more cos my pants are hanging on me - but I also attribute that to my post surgery green smoothie regimen........and also not having dairy and cutting waaay back on my sugar helps too.
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Some years ago, I found that eating sufficient protein at every meal/snack, avoiding sugar and sweets as well as other simple carbs, helped immensely with my fibromyalgia. In combination with exercise I was able to almost eliminate symptoms. At that time, because it was a source of protein, my dairy intake increased. Lately I have cut it way back due to the calories and I just don't feel like it much anymore. What's in your green smoothie?
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Greens rotate daily.....today was spinach, mango, banana, berries, water
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Ginger -
What wonderful news! That is really terrific!0 -
I have been on aromasin for about 6 months now and have started having heart palpatations and heavy chest feeling with short of breath on climbing stairs.
Anyone else experienced these symptoms?
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melodykerr- I just dc'ed Femara last week for those exact same symptoms! Plus, extreme fatigue & depression. On some of my Google research (I know, not always good), I read all AI's could cause all of the symptoms you are discribing. I called MO & he may be ordering an echo to rule out CHF? You may want to call MO, as well, just to be safe! Good luck and keep us posted.
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I have heart palpitations (atrial fibrillation) on and off. They increased while I was on Aromasin and was one of the reasons I stopped the drug.
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Always a good idea to get checked out and not assume it is just the meds. Good luck.
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Thinking of putting my pills in a little bottle with a label that says.....GOOD FOR YOU PILLS
Or
THESE PILLS BRING GOOD HEALTH, LONG LIFE!
Because its really hard to believe my own affirmations when i read all the SEs regarding this drug. It scary.....
this is day 4 on the pills.....
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Oh no - i need to hear the reality.......I know we are all different and our bodies will react differently - I just feel like im taking poison......not sure I even really need to, but doing it bc...well, im a mother, and feel like i want to look back and say I did everything I could.....
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Congrats Ginger and Good Luck kira. I had the cough and eventually couldn't breathe when I changed brands of Tamoxifen, due to non-availablity. They told they thought I had COPD from radiation, sent me to a pulmonologist. My lungs are fine, it was the Rx. It took several months to get over that, but I'm fine now. I have had sleep problems with Aromasin too. Up every hour for 4-5 hours and that's it, I cannot get back to sleep after that, so I've been taking naps in the afternoon when I hit a wall. The aches/pains are still coming and going, very strange indeed how they appear and depart. A heating pad makes my back, between my shoulder blades feel better. I'm with Shayne, I'm thankful for each person who takes the time to post their experiences with this drug - and others. Also appreciate any dietary/supplement experiences. We can help each other through this journey that way. I plan on staying on it as long as I am able, because I figure each day may prevent a cancer cell from growing again. If the SE's get to be too miserable, I'll stop. QOL matters.0
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Just found this on another thread, but maybe it would be helpful to somebody, I take 5000 IU/day already.
Website: http://oncologystat.com/index.html
Vitamin D Eases Aromatase Inhibitor-Related ArthralgiaIMNG Medical Media. 2012 Jun 22, P Wendling CHICAGO (EGMN) - Vitamin D3 can relieve the aches and pains associated with aromatase inhibitor therapy for breast cancer, according to the results of a randomized, double-blind, placebo-controlled trial.Six months of vitamin D at 30,000 IU per week proved safe and was associated with "less worsening" of musculoskeletal events and fewer overall adverse quality of life events in women starting adjuvant letrozole (Femara) for hormone receptor-positive breast cancer, Dr. Qamar J. Khan reported at the annual meeting of the American Society of Clinical Oncology.Aromatase inhibitors are often discontinued prematurely because of new or worsening musculoskeletal pain reported in as many as half of women and fatigue in 15%-30%, said Dr. Khan of the University of Kansas Medical Center in Kansas City.Vitamin D deficiency is thought to contribute to musculoskeletal symptoms, he said, explaining the rationale for the study. It is prevalent in breast cancer patients who have these aches and pains, and in women receiving adjuvant chemotherapy, even with supplementation. A similar syndrome is seen in people with severe vitamin D deficiency, he noted.A prior pilot study conducted by the investigators suggested that vitamin D at 50,000 IU/wk for 12 weeks may be effective in reducing these symptoms (Breast Cancer Res. 2010;119:111-8).The current double-blind VITAL (Vitamin D for Arthralgias From Letrozole) trial evenly randomized 160 postmenopausal women with stage I-III hormone receptor-positive invasive breast cancer and a serum vitamin D level of 40 ng/mL or less. All patients received letrozole 2.5 mg daily and the standard daily recommended daily allowance (RDA) of vitamin D 600 IU and calcium 1,200 mg. One cohort also received 30,000 IU of oral vitamin D3 weekly for 24 weeks; the other was given a placebo.The two arms were well matched with regard to age, race, body mass index, vitamin D level at baseline, adjuvant chemotherapy, and radiation therapy.The per-protocol primary end point was the incidence of a musculoskeletal event, defined as worsening of pain using a simple pain intensity scale, worsening disability from musculoskeletal pain using the Health Assessment Questionnaire II, or discontinuation of letrozole because of pain at 6 months. The primary end point also was measured, substituting the quantitative Brief Pain Inventory for the simple pain intensity scale, Dr. Khan said.Thirteen patients did not complete the study for reasons unrelated to study agents and/or musculoskeletal events, leaving 147 evaluable for efficacy.At 6 months, 37% of women receiving 30,000 IU vitamin D weekly experienced a per-protocol musculoskeletal event, compared with 51% on placebo (P = .069), based on the simple scale. When the more robust Brief Pain Inventory was used, 61% of controls and 38% of those on vitamin D reported a musculoskeletal event, a difference that reached statistical significance (P = .008), he said.A significantly higher proportion of women on placebo also had an adverse quality of life event, defined as a musculoskeletal event plus worsening of fatigue (72% vs. 42%; P less than .001).The median vitamin D level at baseline was 25.1 ng/mL in the control arm and 22.5 ng/mL in the vitamin D group. It hovered at 32 ng/mL at 12 weeks and 31 ng/mL at 24 weeks in the control group, but rose to 53 ng/mL at 12 weeks and 57 ng/mL at 24 weeks in the vitamin D arm (P = .001 at both 12 and 24 weeks).Baseline levels had little influence on the final level achieved. The sharp rise followed by relatively little gain in the active treatment arm suggests a plateau in the effect of continued vitamin D supplementation, Dr. Khan observed.One patient in the control arm developed mild hypercalcemia, and three patients in the control arm discontinued early because of a musculoskeletal adverse event. There were no severe adverse events.Discussant Karen Mustian, Ph.D., of the University of Rochester (N.Y.) Medical Center, said that the trial used well-validated measures and showed no discernable toxicity with 30,000 IU weekly, which is beyond the current RDA. "Therefore it may be promising for helping with these musculoskeletal symptoms and possibly fatigue," she said.Dr. Mustian asked whether the time needed to achieve a benefit poses a potential problem in terms of patient adherence and whether data are available on the sustainability of the improvements in musculoskeletal symptoms and fatigue.Dr. Khan said that aromatase inhibitor-induced adverse events tend to peak at about 6 months and that only one study has looked at using higher doses of vitamin D beyond 6 months. The observation that the effect of vitamin D supplementation plateaus at 3-6 months, however, is consistent with other studies."After you load the body with vitamin D and ... you keep on giving the same dose, the body just maintains the levels," he said.Dr. Khan said that additional studies are needed to address long-term sustainability, and that the investigators have proposed a trial to the Southwest Oncology Group for the same intervention for 1-2 years to study a longer-term effect.Dr. Khan reports honoraria from Abraxis BioScience and Genentech, and research funding from Abraxis and Novartis Roche/Genentech. His coauthors and Dr. Mustian report no disclosures.0 -
Cool! so after the 6mos.....do you keep taking the same amount of Vit D?- that wasnt quite clear......
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Shayne - I have been on Aromasin since April 1 and have little to no SE's. Truly, I can't identify any changes that can be directly attributed to Aromasin. I sleep the same as before, have some knee pain from arthritis that I don't think that has changed as of today, and no other side effects.
Joint pain is my biggest fear since that was my limiting factor for Femara. When on Femara, the joint pain had already manifested by 3-4 weeks on the med and was life-limiting. I'm hopefull I will miss that SE with Aromasin - each day without increased joint pain is a victory.
It's easy to get frantic and expect the worst since there's always that fear of cancer coming back - but take a deep breath and realize this is all good information to store away if needed but much of it may never apply to you.
Good luck - - there are many more good days than 'bad'.
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I know. Im hyper aware right now. I had a hot flash (had them pre-aromasin) that seemed bigger......but its also been 100 degrees out, so thats probably what it was. And twice had waves of nausea..... but this is day 5.....
I think there are a lot of worrisome feelings about C, things I havent even dealt with yet.....that are coming up for me, this is just a trigger for them. Seeing therapist today. I rarely have anxiety, but I do get hours/days of depressive thoughts about death. So I know there are untapped feelings I just pushed down so I could get thru surgery/treatment and all the decision making.
On top of losing a friend to BC recently.......and another getting dx......I feel good tho! My breast post surgery looks awesome! I should be doing a happy dance, but theres a cloud or something over it. I know Ill get thru it. And grateful for this thread as I want to know how people deal with SEs.......
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I just read the above study. That's a helluva a lot of D3. I have been taking it since my dx but only within the past three mos. have I increased it to 2600 IUs. The women in the study were taking 4800+ per day. I imagine we get some in our food.
Shayne - Yeah. This BC is quite a loaded emotional bomb. It unfolds in layers.
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My Naturopathic Oncologist has been monitoring my Vit D levels with blood tests. Post radiation my level was 27, she said you want your level to be between 50-75. We have varied the doses to try to keep it above 50 since then, but I have taken between 5000-8000 IU/day to keep it there and the highest it has been, has been 67 and the lowest 24. She told me low Vit D is very common to breast cancer patients.
Shayne, I also sailed along for about 2 months after my diagnosis, then had a melt down waiting for the results of my Oncotype test. (The Oncologist went on vacation and let the report lay on her desk - seriously - while I sufferered the first and only anxiety attack of my life. I fired her BTW, and told her why.) There is an itchy, looking over my shoulder feeling in me sometimes, that I call the Cancer Boogeyman. After I hit the 2 year point in May, it has subsided some finally, but I don't know if it will ever go away entirely. Nothing used to bother me ever, I was a military wife, we relocated 12X in 21 years, spent 9 years in 4 different countries, etc. etc. but this stupid cancer business is my Achilles heal. I have used visual imaging and yoga, which has helped, but have used Xanax several times since then too, when things in my life, other than cancer, piled up severely this past 1 1/2 years and there was nothing I could do but work my way through them. Hang in there, I'm pulling for you.
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Thanks Phoenix! Ive always been an emotional type, but post-meno, that kinda changed with my "dont sweat the small stuff" attitude. This, is a beast! I know its hard on my husband too.....
I know once the end of this "no gym for 6weeks" thing is over.....Ill be back at the gym and feeling better.....
Lets see what the therapist says today......
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I should also add, that I have occasionally woken myself up screaming in the night since the diagnosis. I thought it had only happened a few times, but my husband and son have assured me that I "squeak/yell" more often, I just don't wake up, but they do. My mind is working overtime even when I think I'm doing just fine mentally. They love me and haven't voted me off the island yet.
My PCP sent me to be evaluated by a psychiatrist when I asked for a Xanax refill this Spring. The psychiatrist told me, "Considering all you have been through in your life, you are remarkably well adjusted and there is nothing wrong with taking a little Xanax occasionally." It made me feel 100% better to know he didn't think I was crazy, just stressed. 0
