Starting/declining hormone therapy Nov, Dec, Jan 2018
Comments
-
Hi Bennybear - I tried Anastozole, and after 3 weeks had to quit due to side effects. Would you mind sharing what SE's you had (if that's the reason you switched to Exemestane) and how you feel taking Exemestane? Cute Pup!
0 -
Hi ladies - by request, these are the titles of the other articles that are in the recent issue of The ASCO Post (News and Views from the World of Clinical Oncology and Hematology) dated Jan. 25, 2019. Let me know if you want me to take pictures of any of these articles and post them. I thought there was something AI specific but it looks like there isn't, however I think AIs are discussed in some of these broader ones...
(and Julesm59 the pups are Domino and Tucker, love that they make your day! bennybear - what a cutie grandpuppy, hurrah for another furry friend to join the mix!)
Low Does Tamoxifen Halves Breast Cancer Risk in Women with Preinvasive Breast Lesions - posted here: https://community.breastcancer.org/forum/78/topics...
PACIFIC Trial of Durvalumad Sets Standard in Stage III Unresectable NSCLC\
Role of Adjuvant Capecitabine in Triple-Negative Breast Cancer
Oxybutynin: A Novel Option for Managing Hot Flashes?
BEAT AML Umbrella Trial: bringing Personalized Medicine to Acute Myeloid Leukemia
Primary Prophylaxis With a Direct Oral Anticoagulation Agent Reduces Venous Thromboembolism Rate in Ambulatory Patients with Cancer
Use of Isocitrate Dehydrogenase Inhibitors in Inudction Therapy for Newly Diagnosed AML
Risk of Local Recurrence in Breast Cancer: Impact of Molecular Subtype and Surgical Approach (talks about avoiding axillary node dissection in this article too, I read this one as it was interesting to me)
Preventing Locoregional Recurrence of Breast Cancer Should Not Deter Efforts to Decelerate Therapy
Challenge Moving Forward in Breast Cancer Treatment: To Show That New Approaches Change Outcomes
Changing Perceptions on Surgical Intervention for Geriatric Patients with Cancer
Addition of Atezolizumab to Nab-Paclitaxel in Advanced Triple-Negative Breast Cancer: IMpassion130 Trial
Genomic Classifier for Luminal Androgen Receptor Triple-Negative Breast Cancer
Findings from ASCO's Second National Cancer Opinion Survey
27% Drop in Overall US Cancer Mortality Rate from 1991 to 2016
Use of Valerian to Relieve Anxiety in Patients with Cancer
Emerging Clinical Data on Cancer Management (talks about immuno-oncology and other things)
In other news, here are Domino and Tucker helping to get us motivated to work out (they are helping me do sit ups here :-P )
0 -
Hey, gals and guys, is there anyone on here still staring at an unopened bottle of medication? If so, how can we help you? I happened to go back to mid-December, and several people were in the bottle staring phase. Can I get a roll call of how everyone is doing and did you start with a full dose or half dose? I see my MO next week and am approaching him about this topic, as a possibility for a survey of patients or White Paper on the efficacy of introductory dosing. Hope everyone is doing well. I had to send my dh to the store for bananas and gatorade, my muscles were have a spasm party, when I was supposed to be sleeping. I had taken magnesium last evening, but I was having microspasms in my legs, face, neck, ears to scapular area. Working on getting more potassium into the diet. Hugs to all on this thread!!!
0 -
Hi All, I'm due to start tamoxifen in a few weeks when I complete radiation. My MO prescribed the full 20mg dose, but completely stressed out at starting at a full dose, mostly due to the fact that I'm only about 112 pounds and very concerned about side effects. For those of you taking a half dose: did your MO's give permission for that, or did you just do it on your own? My MO is very black and white, and I have a feeling he would say starting at half dose is not necessary.
0 -
Hi Michelle_in_cornland,
For your roll call - I finished radiation mid-December, started Tamoxifen mid-January (Jan. 16th I think) at the 10mg dose. I am still on the 10mg dose. I was going to increase to 20mg this month but based on the research my Dad sent me that 5mg doses were just as effective as 20mg (granted for an earlier stage than mine, but still...), I'm going to stick with 10mg for now and discuss with my onc when I see him in March.
Side effects - none really so far! I had very mild nausea a couple times but that also might have been because I didn't eat, and now I usually eat something just before or after taking tamoxifen and I'm fine.
I take it at night around 8pm.
I love this survey idea and hope you make it happen!
kec1972 - my MO was on board with my plan and prescribed me the dosage at 10mg specifically so I could do the slower start.
Pebbles
0 -
I started Anastrozole every other day (never occurred to me to cut them in half!) for about three weeks before switching to every day. My MO was fine with it--I think they're much more interested in you starting it and staying on it for the full five (or however many) years than what you do the first few weeks.
0 -
After clearing this with the pharmacist - yes ok to split the pill - I took a quarter arimidex/anastrozole for four days, then a half pill for four days, three-quarters, and then whole pill.
The hardest part was the very beginning, a really bad couple of days like the flu, and then going from a quarter to a half. The next rampups were pretty straight-forward.
Now three weeks into the whole pill. Stomach aches have gone away, insomnia was only bad for a couple nights. Headaches are there but less intense, many days I take no pain meds.
The remaining symptom is fatigue. Sure hope that continues to inch better. I'm 67 but that doesn't explain this level of tiredness.
I had been really afraid of how this would all go, to the point of postponing important things in my life to make room for getting used to the AI. Now I feel like I can start picking those up again gradually.
0 -
egregrious - I'm only 42 and feeling fatigue as well. I'm just not sleeping well on anastrozole. I can usually get to sleep, but most nights I wake up, and then some nights I can't get back to sleep, but either way the sleep just doesn't seem as restful. Then about once a week or so I sleep like the dead. I always feel better after those nights.
0 -
I started Aromasin gradually too... I wanted to start with halves, but the pill broke to 3 pieces, so I started with the smallest piece. After these first 3 days I decided to cut 10 tablets in half. Of course, I didn't manage to make neat halves. So I started with the smallest "halves" and worked my way up to the largest ones. I don't really see any SE's yet.... I am on whole pills for about 3 weeks. Of course, hot flashes are ever-present, but not too bad, it's winter and snow. I am sleeping very well, actually... I wonder when do the SE start, maybe they will just slowly creep in....
Oh, and my MO approved the half-dose
0 -
Hi Michelle_in_cornland! I started full dose anastrazole in mid September, 2 weeks before rads started. My MO and RO were both fine with this. Until I found this thread, it didn’t occur to me that there were options! I’m very lucky in that my worst side effect was horrible hot flashes. My MO prescribed Effexor, which is working well. Wishing everyone here a wonderful weekend!
0 -
I started after Christmas with half doses for a week or so, then full dose every other day, then moved up to full dose in the third week or so. The only real SE is an occasional warm "flush" (British term which describes mine more accurately). It reminds me of the sensation when the contrast stuff is added during a CT scan, without the feeling of having to pee. I just get a warm sensation that starts in my head and spreads downward, and lasts maybe 30 seconds.
I don't know what body aches can be blamed on Tamoxifen. Within a short amount of time, I had to stop taking Motrin and start a statin drug and then start the Tamoxifen, so I was bound for misery anyway since I have a LOT of arthritis. Tylenol does very little to help.
0 -
Preparing to start. I have the arimidex prescription filled and ready to go. I get my first Lupron shot March 4. I asked my MO if I should give it some time after Lupron before starting the AI and she said there was no point in waiting and that I should start them concurrently. I'm not so sure though. I tend to have a fairly reactive body, so I feel like easing in makes a lot of sense for me. What would the gentle start experts here say?
0 -
Rljes, I was on anastrozole nearly three months and started having thinning hair and a very twisted finger joint. So I was taken off for a month and put on Exemestane instead. I did a Slightly slow start with It and so far it has been better for my hair and my finger. The jury is still out on my knee after just over two months so we shall see if it settles. My sleep is settling but wasn’t great the first few weeks. I do have hot flashes but they are manageable.
Pebbles love the dogs! I would love to see the two articles on recurrence please and thanks!
Thanks for everyone’s sharing!
0 -
OT, I am like you - very reactive. I would start with the injection, settle in with that for 3 weeks, and gradually start the anti hormonal. Tell your doctor that how you start, can determine whether you stay on the medication. They will buy into that theory, because they want you on your meds for the long run. My theory, that I am excited to discuss with my doctor next week, is that slow introduction, with a timeline chosen by the patient, helps the patient ease into the medicine and accept the ownership of taking the medication. Ownership and knowing ones' body, is very powerful. Thank you everyone for your feedback.
0 -
For the roll call:
Finished rads on December 31, 2018 and started 1/2 dose of letrozole on February 13, 2019. After 4 days on the half dose I began to take the whole pill. I have completed 5 days with the whole dose-so not a very long time. So far I have had some minor side effects...a few hot flashes each day, but nothing too troublesome...some itchiness in random spots at random times...an occasional queasy stomach but that could be from Naproxen. I already had achy and stiff fingers on both hands due to osteoarthritis, but sometimes I think it might be worse. I am taking a lot of Naproxen for my shoulder so I wonder if that is easing any other joint pain? I am still tired and it's probably because my sleep is interrupted several times a night with shoulder pain, though the medicine and radiation could be contributing too.
I would have liked to take more time to ease into letrozole but since I see the MO's nurse in a week and a half I figured I better get into it! The purpose of the appointment is to see how I'm doing with letrozole so I wanted to make sure I had taken it for a few weeks.
Good luck with the survey Michelle!
0 -
JaBoo you really might not get much in the way of SEs. The downside of reading threads like this is that you’re hyper aware of what they *might* be. Post-menopausal women get lots of creaks and stiffness anyway. I’ve noticed a *little* more since starting the AI but maybe only because I’ve been paying more attention. I think I was a *little* more headachy early on but really never bad and that seems to have subsided. I seem to have skipped the hot flashes—I’m guessing because I didn’t have that much estrogen going into this. I’m sure younger women have a much tougher time.
OT if there isn’t a medical reason to start right after the Lupron I’d probably give it a week or so to let your body calm down.
0 -
Ingerp..with all due respect suggesting that reading about side effects on this forum will make you more likely to get them seems somewhat demeaning to those experiencing them. I'm happy for anyone who does well on anti hormone therapy. I do not dispute their ability to lower recurrence rates if taken for the recommended time period. However the compliance rate is only 40-50 percent due to side effects. This number is way too high for it to be considered an effective treatment. We need to speak up for better treatment options!
0 -
Raising hand for the roll call ...
I'm about five weeks into my Tamoxifen prescription. I started at half-doses every other night before going to bed for a week, then every night the next week, then alternated with a full dose every other day for about ten days, and have been at the full dose for a little over a week. I told my MO what I was doing and she just nodded. The most noticeable of the side effects coincided with introduction of a larger dose. I had leg cramps the first night I took 20 mg, but they haven't returned. I've also had some hot flashes, which were most dramatic when I was getting used to the 20 mg dosage, but they've eased off too, and I suspect that the intensity was aggravated by the fact that my period was also on its way, a time when I've had some hot flashes in recent years anyway. So far nothing has happened that would even come close to being more difficult to tolerate than a recurrence would be. The jury is still out on how this is going to affect my migraines; I'm sure they aren't worse, and am cautiously optimistic that they might even be better, but ask me again in six months. However, if the end result of all this is that my migraines disappear, that would be an incredible silver lining in this frightening traumatic cancer cloud.
I've also been taking a magnesium supplement before bed, a powdered version of magnesium glycinate that dissolves in water. I bought it at a local vitamin shop the day after I woke up with the leg cramps, and they haven't returned, but it's impossible to say whether the magnesium made the difference. I've also really ramped up my exercise routine in the past 3 weeks with some yoga classes, weight training, and as much walking as I can manage on our neighborhood's icy sidewalks, so am feeling more energized and stronger than I have since this whole ordeal started in September. I'm sure that's helping to ward off side effects too.
Next up: fix my diet. All my intentions about broccoli and flax have fallen prey to Valentine's Day chocolate and the winter craving for comfort food in frigid temperatures, and I definitely haven't lost weight since treatment ended. But, just like with the treatments themselves, maybe one thing at a time is best. Nearly all of us waited to start our pills until we'd recovered from radiation and/or chemo, and I think most of us didn't start radiation/chemo until we'd recovered from surgery. They recommend that because they don't want to overwhelm us with side effects from too many treatments at once, because then we'll quit our hormone treatments in hopes of feeling better, which we will, because we were going to feel better anyway because we finally recovered from radiation, and then we'll never take our pills again because we thought they were the problem when they really weren't. I think it's the same with the healthy habits I'm trying to develop. Trying to start new habits of drinking extra water, eat more vegetables, exercise five times a week including scheduled yoga classes, give up all sugar/dairy, get to bed on time, all at the same time, is the sort of thing you can only do at one of those health resorts with a super structured boot camp type program, and then it all falls apart when you get home anyway. So, it's one new habit at a time for me, and I'm going to go ahead and keep eating cookies until I'm settled into the exercise routine!
Pebbles, thanks for the links to the articles! It gives me so much hope to think that a lower dose might work just as well, even though it hasn't been bad for me so far. It sounds like your father thinks that this study might apply to patients with small invasive tumors too, even though the data was from patients with Stage 0 and other precancerous conditions if I'm understanding that right? That would be so great. I'm going to keep a sharp eye out for any additional studies on this and be prepared to ask my MO about them at my next appointment.
Addendum: dtad, I read your comment after posting this, and I hope it doesn't sound like I'm discounting anyone who has experienced terrible side effects. As easy as it's been for me, I've also experienced a day or so of the kind of discomfort "down there" that would have been an absolute libido-killer if I was in that kind of relationship right now. If I were, and if the pain had lasted beyond that short timeframe, and if relief would come only from quitting the pills, I would be questioning their value pretty hard. I can't even say with certainty that that won't happen down the road. I'm only five weeks in, after all. But for now, I want to reassure anyone who's really frightened about side effects that there are also women who do just fine.
0 -
Michelle In Cornland-
I am still staring at my bottle-even though my MO gave me a prescription for a 5 mg (well, 10, and I cut in half). I took the full 20 for three weeks-back in Dec.-and the SE’s wrecked my life! I have the jitters about taking it at all. I also just met with her yesterday...and she said it’s “20% chance of recurrence without it and 10% with it”
Hope everyone else is ok out there!
0 -
I have been on hormonal treatment for 71/2 years, and doing great!
0 -
Ingert, my participation on this thread, has been to share my experience with a slower introduction (with MO's blessing) to diminish early onset side effects. We don't learn to ride a bike by hopping on, we have training wheels to help us. Other medications have a ramp up aspect, why not these? When some people start these meds at full dose, they are hit with the full degree of side effects all at once. Those side effects can be pretty discouraging. So, supporting each other through those times and encouraging an open dialogue about dosing, with the provider, is a novel approach that I have been working on for two years. It has helped hundreds of women, ease into taking anti hormonals and gives them peace of mind. My philosophy that, "it is not how we start something, it is how we finish," has been my life long mantra. The same is true for these medications. We have to have successful starts, to be able to complete the journey. I started my journey more dramatically. I had planned to take an AI, had an ooperhectomy/hysterectomy and afterwards discovered osteopenia in my hips. That factor led me to selecting Tamoxifen as my choice. And, I agree that reading through some threads on this site can be a bit unnerving, this thread is supportive and encouraging. I have had my own thread on the Hormonal Forum, Uplifting and Lively Messages, to support others in this journey, as I live my daily life.
0 -
I started 1/2 dose Tamoxifen 1/15/19 the same week I started Radiation. I am Still undergoing radiation and will finish 3/8. I did not run the half goes by my MO but I did tell him when I went for my next visit. He seemed fine with it I didn’t ask him I just told him what I was doing for me I felt better going with the half dose to start. I had major fatigue in the beginning which I thought was from radiation but I’m starting to feel better so it might’ve been from the tamoxifen so hard to tell with multiple treatments going on. I definitely don’t sleep the. The way you described sleep @ hapa was dead on for me. I used to e a super sleeper but not anymore. I have mild joint pain and some hot flashes but nothing unbar
0 -
PurpleCat, I'm another one who has gotten through everything but the exercise/diet part. I lost a lot of weight last year that turned out to be partly from another health issue. I quit smoking before my last big surgery and starting radiation. Boy, did the weight pile back on faster than I expected! For some reason, radiation made me so hungry, and it was getting into holiday food and comfort food season. Now that I can no longer take Motrin (for reasons unrelated to breast cancer), the extra weight is an additional burden on my arthritis. But I think I may have found a mental solution to strengthen my diet resolve, and that's to approach it like I did radiation, something I hated at first but knew I had to do it. And before starting radiation, my hubby got me a pack of dollar scratch-off tickets, one for each day of treatment, so I'd have something a little fun after each session. So I'm going to get my un-fun healthy food and my scratch-off tickets, and look at the new food plan as the next part of my treatment. And I'll keep reminding myself that after three surgeries and 33 rounds of radiation last year, I can damn well get through this!
0 -
Ingerp, I totally agree with dtad to assume that I did not try everything to take and continue Arimidex as long as the the five years recommended is a joke! Initially I did well with few symptoms, taking claritin, acupuncture ,yoga, almost daily exercise including rowing, weight loss ( which I did not really need being 5'9'' and 140 labs) I had to stop after almost 2 years. My quality of life really deteriorated, I had so much bone pain I could no longer take it!!!! I felt like I was 90 years oldcI am older but the qualitc of life that Arimidex was taking away from me was not worth itc I think it actually damaged my jointsc I had a less virulent form of breast cancer,cpure mucinous so I know had a few other options so I took them. I am happy with my decision of being off of Arimidex, exercising at lest but more than 150 min per week, 14 hours or fasting, keeping my weight down and reducing stress! I am a Registered Nurse with a Master Degree, I read every abstractc about breast cancer and do not take it lightly, we have to make our own decision and realize a lot of our MO, RO are not always there for us. My first Mo pushed chemo, hardly knowing about the unique features of a Pure Mucinous Breast Cancer, I found another MO who was very knowledgeable, so be careful out there!!
0 -
AliceB, I love your husband's scratch ticket idea! The month I was getting rads seemed endless; I was always excited after the Friday treatments because I was one week closer to being done, and I had two whole days where I didn't have to drive to the hospital. I'm also TRYING to improve my eating habits. Some days are better than others. I know what I **should** do, I just struggle with the execution. I like your idea of treating food as part of my treatment plan. It would be much easier if sugar wasn't so tasty! ;-) Pebbles, as always, your paw family makes me smile each time I see them! Hector, my 18 year old Jack Russell terrier, is snoring next to me as I type this. He has stuck close to me during my treatment and recovery.
0 -
Purplecat...thanks for your reply. You are among the very few people that seem to understand that your decision might be different if you were having QOL issues on anti hormone therapy. The majority of people who seem to not understand are those who are doing well on it. As I've said many times I'm happy for those who do well on it and I don't dispute their effectiveness if taken correctly and for the duration. My problem is those who seem to condemn not taking them or stopping them early due to side effects are those who are doing well on them. I just suggest a little empathy. Good luck for all navigating this complicated disease.
0 -
I kept a calendar, during my days of radiation. Each day, I would come home and make a big "x" through that day. I kept a very goal oriented, detailed calendar. A year later, a bc study interviewed me, and paid me for my notes on what I did to make it from diagnosis to anti hormonal treatment. Those days were not full of butterflies and rainbows, but hard work trying to contemplate the next step. Tangible reminders, such as journals, calendars, etc. are good to read, when you need a boost. The best one that I have found, and I tried 3 last year, is the one that I initially had that was spiral bound from Michaels.
Side note: to all puppy gals on here, last night we had 50 mile an hour winds and my dogs were howling. I used music from you tube, called something like, "music to help your dog sleep," that was on 4 hour loops. They did very well and I hung several blankets around the sides of their open top play yard, to muffle the sounds.
0 -
dtad, I so agree with you. I have already tried Anastrozole for three months and am now on Exemestane. I had a very serious risk benefit discussion with my MO this week and I was told it was my decision if I decided my quality of life was too affected and would support stopping in my situation. Everyone’s diagnosis, prognosis and side effects are different and so will be their treatment. It is a very tough balancing act.
I will attempt to make that decision after a few more months to see if things resolve. Best of luck to you and others as we walk this path. Hope everyone does what is best for them and that we can support each other along the way.
0 -
My babies, this was taken a couple months ago. I will update with a current pic later. They are amazing and I love them so much. Always ready for a snuggle or smooch session. They like to hug me around the neck, and rub their noses in my hair. Theodore (salt and pepper) and Thaddeus (white) mini schnauzers.
0 -
oh I love schnauzers Michelle. My very first dog was I was a little girl was a miniature grey schnauzer! I loved that dig so much
0
