Bottle o Tamoxifen
Comments
-
Omg sister, I’m scared shitless that we are taking our lives in our own hands. Yay us!!!!!!!! I’m so happy for you!0 -
Edj, love you back! Or should I say I love your back, as you run, crazily, in the opposite direction for no other reason than the pure joy of it. (this is not normal, just sayin).
Molliefish, I know! Taking control of the life. Next we'll be chewing our Flintstones vitamins and nothing can stop us!
BlueGirlRed, I have not stopped my BP meds entirely. I used to take one every night. Now I take one every other night. My numbers range from 124 over 74 at the very highest, to 98 over 61 at the lowest. The average is somewhere in the middle.
My doc had bothered me for a long time about my rising BP and I blew him off. He finally convinced me to go on meds and rummaged around in his desk drawer and pulled out some random box of tablets and said, "Here, I got these from a drug rep. Try them for 10 days and come back and we'll check your numbers." So off I went with my little box of sample tablets and within 3 days I thought I was going to die. I. Could. Not. Move. I sat on the sofa feeling like my body was encased in concrete. It was an effort to move my eyeballs. It was like the worst stone you've ever been on. I was utterly flattened. Another two days in I staggered into the pharmacy, where I know the pharmacist and said if I was supposed to be feeling like I had an elephant on my chest. He looked at the box of tablets and pretty much freaked out. "Holy shit! This is what you give patients as a last resort. This is the final drug when every other blood pressure med has failed. This is NOT entry level BP meds! Quit taking these immediately and tell you doc to prescribe hydrochlorothiazide." So I went to doc, told him I was dying and that the pharmacist said to give my hydrochlorothiazide and he said, okay, and did. He gave me 25 mg dose which still left me flattened. I dialed it back to 12.5 mg a day. And STILL have felt no energy FOR YEARS. Until now. When I went rogue.
Weird about the dry cough. I developed a dry cough year before last and put it down to forest fires and HEAVY smoke in the air. Went to doc. Got x-rays, of course I was thinking I had lung mets because that is the gift that keeps on giving, paranoia, which isn't really paranoia considering it might actually happen. Anyway, lungs were fine but doc put me on steroids, which did not help. An antihistamine finally did. I am coughing again now. That single, occasional, pointless, dry, tickly cough that makes people in public think you are Typhoid Mary come to contaminate them all. God help you if you have an allergy and cough or sneeze in public. I had not considered that this might be a side effect of BP meds.0 -
There is one class of BP meds for which a dry cough is a common side effec. Been there, did that one, changed meds.
Edited to correct autocorrect!
0 -
Runor and Beaverntx - the DR's choice of BP drug was not a random one, but probably one of the first choices after thyroid ruled out. As I mentioned, I wished I had told the DR immediately about the persistent dry cough. It is a common side affect of the class of BP that lisinoprol is in. She switched me Candesarten, in another class of BP. The cough went away immediately. And the candesarten seems to work better. When I mentioned the occasional low BP (90/50) on the new drug, she told me just not to take it on those days. The low reading when it happens is hours after I've taken the drug. It is usually back up to 115/65 the next day. Since I do not get a steady low BP, maybe I shouldn't worry about it. But I think it does explain the very low energy I feel.
0 -
bluegirl, I agree on causing low energy!
0 -
Hi BlueGirlRedState, I found that when I was first started on a B/P medication I felt weak and off. My B/P was low on many days except when I went in for a visit! For 2 weeks I kept a diary of my B/P's at bedtime and morning before coffee. You need to be sitting for 10mins, sitting up, and legs flat on the floor. Arm elevated at heart level. As it turned out the dosage was too high. Now I am on the correct med and dosage and I no longer have that off weak feeling. Good luck to you.
0 -
Thank you to all who replied to BP. Have been on BP for 7 years. 1 year or more Lisinoprol, then switch to Candesartan. I usually take BP before breakfast, sitting down, arm resting on couch end or pillow. Sometimes I take afternoonish if feelng really tired. BP meds and other Meds/supplements with breakfast. Since the low readings tend to be occasional, I won't worry about it. Interesting to hear others experience it as well. When drugs control when the body fails. I seem to be at the highest dose. Tempting to split the pill and see if/how things change.
0 -
You are right! I was on Altace for 2 years and have been on Lisinopril for 10Years. I was on 2.5 mg and after a 15 pound weight gain now on 5mg. My caffeine is limited. I have 3-cups of coffee before 5pm and occasional dark choc after supper.
0 -
Hi! I’ve been on 20mg Tamoxifen for 4 months. I am 20 lbs overweight (mostly gained during chemo.) My side effects are mostly achey joints, hot flashes and I can’t seem to lose the weight.
I started taking Glucosamine but I don’t think it helps. Aleve 2x/day helps some, but I don’t really want to take that all the time for 10 years!
Is there a list of supplements or things to try that might help?
I notice when I drink a ton of water, exercise and don’t sit down, I feel better.... as far as the joint pain goes. But as soon as I sit down...... ouch! Trying to get back up again is painful. I’m a teacher so I’m use to standing a lot.... just hate the joint pain!!!
The thought of living like this for 10 years is quite depressing, but if it keeps the cancer away, I will do it.
0 -
in my experience, I have had several side effects for a period of time that eventually resolved. I have not had overall joint pain, but did have hand pain. This resolved in about 6 months. Generally I find that one side effect resolves at about the time I think I cannot bear it any longer. Hoping that your pain subs
0 -
That's what I'm hoping (the side effects will subside.) Thank you so much for giving me HOPE!
0 -
Definitely keep up with the movement. And water, water, water! Tamoxifen is very dehydrating so you have to drink more water than usual. Also try adding a good turmeric supplement. It must have the black pepper in it. I took Gaia turmeric for years and recently swapped to Bio Schwartz. I like them both and usually just get whichever is in stock and/or cheaper. Here's how my doctor told me to take it: take 1 capsule a day for a month and if it works keep doing that. If not, take 2 capsules a day for a month. If that works, continue with 2 for another month then wean down to 1 and see if it continues to work. If 2 doesn't work then turmeric probably won't help you. It doesn't help everyone but when it does, it really works!! My doctor also had me take ginger, fish oil with at least 900mg of EPA/DHA. I take the Vitamin Shoppe extra strength brand that has 990mg I believe. He also put me on magnesium. At his recommendation, I take magnesium glycinate. I found the KAL brand to work the best. Once I got on this regimen, most of my aches and pains faded away so I was able to get through my 5 years.
In addition to these suggestions, I will say that at the recommendation of a worker in the Vitamin Shoppe I started taking olive leaf extract capsules. I was struggling with lots of colds after my surgeries which I usually never get. I started OLE about 6 years ago and haven't had one cold since! I totally swear by that stuff!
To top off my list I take a baby aspirin twice a week to help keep blood clots away (which is an SE of Tamoxifen). I only do 2 times a week because daily made me bruise badly and my doctor feels this dose works just as well. And lastly I take a multivitamin...one with as low a dose of Vitamin E as I could find as my MO feel E is slightly estrogenic.
So there's the list! Hope this helps!
PS--Try not to worry too much about the weight right now. My MO told me that most of his patients gain about 40lbs in the first year with Tamoxifen and usually in the second year about half will come off. I gained about 15 (so he was happy) and none came off till I got off Tamoxifen. And even then it took another year for it to suddenly start to go and another 6 months to get back to pre BC weight. So just be patient and give yourself a break.
0 -
wulfgirl4 - SEs and what works to alleviate vary so much with each person Not taking tamoxfen now, but when I did, did not experience joint issues or weight gain with tamoxifen, but did get very painful calf cramps, which seemed to happen almost randomly. Could go for days with no problems, then WHAM! - when active, when sitting, when stretching. Magnesium, staying hydrated, staying active, stretching all seemed to help. There are lots of formulations of magnesium. Acupuncture, yoga, Quigong might also help. An ND/Functional Medicine might also have recommendations.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
2019 Right Axilla, ER+. Ibrance and brand name Arimidex started Sept 2019. Fatigue with Ibrance and low blood counts, and occasional mouth sores. Joint issues and hair thinning with Arimidex. Tumor shrunk from 2.5 cm Sept 2019 to 7mm April 2020.
0 -
I have been on T since Jan, last chemo was October. Started with swelling in my hands/feet and neuropathy almost 2 months ago and it’s hell. They’ve got my on gabapentin 600 mg 3x’s a day. Not lymphedema, just had bloodwork (came back good) and waiting on echocardiogram. She said I if all comes back ok she thinks it’s coming from T, My hands and feet feel like they’re going to but and the burning feels like ice stuck my hands in a grease fire. Has anyone else had this problem? I’m to the point I’m about to stop taking T and see what happens because I can’t continue with this pain anymore.
0 -
Hi jjpope1,
I've been on Tamoxifen since Feb., last chemo was Jan. I feel swollen, too. I'm on gabapentin 600mg 2x/day but they said I could go up to 3x. I have a mild case of Lymphedema in my right arm (I didn't know there is a blood test for that???) I experience the burning feeling in my arm that has L. I thought it was nerve damage or lymphedema... idk. I just feel like this is my life now.
0 -
lala1,
Thank you so much for the info. It seems like I'm also really tired. I sleep well at night but end up sleeping in and then needing a nap later in the afternoon. I have to drag myself around to get my 10K steps. I also seem to lack motivation to do almost anything.... almost like depression... but these two things didn't hit me until now... and I've been on Tamoxifen for 4 months now.
Do you know if any of those supplements help w/ fatigue & depression?
0 -
I haven't dealt with depression but definitely had the fatigue. I'm one of those people who NEVER naps. It makes me feel groggy the rest of the day and then I don't sleep at night. But after having my surgeries and starting on Tamoxifen, I couldn't get enough of napping. My dad is a doctor (retired now) who was very successful surgeon in his day. He told me when I was first diagnosed to be prepared for the fatigue. It's his opinion that the surgeries take way more out of us than our doctors will say. He told me that for each surgery I had to be prepared for 6-9 months of ongoing fatigue! And he was right. It wasn't till I was a year out from my last surgery that I even felt close to normal again. And the Tamoxifen doesn't help. It didn't really affect me till I got to about 8 months in and then it was not fun! The only thing that helped me was exercise. Even when I really didn't want to do it, I would still go to the gym. Many times, if I was really tired, I would just do a yoga class or swim in the warm water pool but I forced myself to do something and it helped. Dad really feels that the best way to get all the anesthesia and it's after effects out of the body is through sweat. So that's what I did and by year 2 I was pretty good to go! I would think it would help depression too but I also think you need to tell your doctor about both and see what their recommendations are.
0 -
Jjpope, as far as I know there is no blood test to check for lymphedema. In fact, if lymphedema is a potential problem, you are not supposed to get injections or blood tests on the bad arm, because it can flare the lymphedema. Do not anger the nodes! From everything I've read the burning and pain is more likely to be from the chemo and not the tamoxifen. It seems tamoxifen is connected to a general, overall, creaky, achy, muscle crampy sort of feeling. But not acute, sharp pains in the extremities.
I have my annual oncologist visit (it will be by phone due to covid this year) and I don't like to sound like a whiner, but the level of creaky is no longer funny. Getting up out of a chair, off the sofa, kneeling down and getting up, squatting and getting up... I'm like a praying mantis unfolding in sections, very slowly. I wake up in the morning with my arm bent up under my head, under the pillow and I try to bring my arm down and nope, guess not, it seems stuck up there, that shoulder joint is not going to move, so I guess I spend all day with my elbow on my ear. Hard to get your bra on that way. I know I'm old and out of shape but the decline in my physical ability cannot be this fast just because of age. It makes no sense. I used to be able to do the splits! Now I have to strategize how I'm going to get my shoes on!
I do have to note, just to be balanced, that my hair has stopped falling out. It's not growing back. I don't think. I still think my hairline has receded. But it's not all over the floor and in the tub like it used to be. I take 10mg every day. I was taking 10 mg most days and 20 mg twice a week, but I dialed it back to 10mg every day. Is this the reason my hair stopped falling out? I can't say for sure. But I'm still seized up like the Tin Man waiting for a can of oil and that seems to be getting worse. But another good thing...I noticed that for the first time since mid 2016, my boob doesn't hurt anymore. My boob hurt before cancer, hurt during the surgeries, hurt after radiation and hurt 24/7 for all of 2017, 2018 , 2019 and start of 2020. Then it quit hurting. It came as a revelation when I noticed, hey, my boob doesn't hurt anymore! I think that is due to the extreme, strenuous activity of spring cleaning the property, which including picking up, cutting, loading, re-cutting and burning truckloads of debris. For months. It's like bound up, tied up, constricted chest muscle and scar tissue got torn loose. It hurt when I was working like that but now? I have no pain. It's amazing!
0 -
Runor so glad to hear the scar tissue is finally released on that boob! It can definitely take a while can't it? I have experienced the same thing after two years of massage therapy, yoga, stretching blah blah, the farm work has really helped me loosen up. Now if that would work on my joints when I first get up. Really laughed at your analogy of a praying mantis that describes it perfectly.
I had my annual Onc visit yesterday and told her that the last month on T has been, in a word, brutal. I have no idea why all of a sudden I had such an aggressive uptick in side effects. I have always had the hot flashes muscle cramps leg pain and fatigue but not on this level. I told her it had left me at about a 30% functional level when I needed full steam for spring farm work.
I had started a new refill of T but the pill markings and supplier were the same so unless the manufacturer put too much active ingredient in that lot no clue there. It has been really hot here so maybe I am extra dehydrated. Or maybe I am finally transitioning into menopause. So lots of bloodwork to see if anything like that shows. The other thing she wants me to try is to go to 10 mg pills twice a day. She said that by taking the pills twice a day, it reduces your one time peak medicine concentration , while still giving you the consistent low range concentration that is supposed to be protective. So still trying to do the 20 mg dose. I did request that she run the Oncotype RSPC calculator on me because I want more granular detail on my specific risk profile. But yikes! I hope we can get this "trend" in side effects to subside.
0 -
jjpope1 - I think lymphedema is diagnosed by measuring the affected limb in several places and comparing it with the unaffected. If the affected is more than xx cm larger, than lymphedema is suspected. Everyone says no cure, but only managed. The sooner diagnosed and treated, the bettter. Ask your DR after referral for a lymphedema therapist. You might want to consult with DR and make sure it is not something else. Also check with insurance, somethings may or may not be covered. I've heard that impedence can also be used to measure. I wear a sleeve and glove, and have recently started using a "pump" at home. Self massage also helps. Swelling has gone way down since I first saw therapist, but is still there, and sometimes goes up or down between visits.
Self massage https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be
https://www.mayoclinic.org/diseases-conditions/lymphedema/symptoms-causes/syc-20374682
https://www.stepup-speakout.org/
wulfgirl4 - Fatigue sucks. Diet/Nutrition and staying hydrated. Stretch. Always do at least something, and push harder on days when you feel better. When I took tamoxifen (I'm now on Ibrance and Arimidex) it did not notice fatigue, but SEs are different for everyone. The lockdowns with COVID might also be contributing to your overall wellness and feelings, even if you are not directly affected.
0 -
lala1
Thank you for sharing your dad’s perspective on this. I believe him. I’ve had to push myself every day to stay active. Trying so hard to be patient with myself. I just want my body back. But you’ve given me hope that it WILL happen.... in time. 😊
0 -
lala1 my dad is also a retired MD! And his advice to me was around the radiation treatment--he said all his patients who had radiation were flat out exhausted and that it lingered. His exact quote was "it really takes the starch out of you."
Inwardly I scoffed (was going through radiation this time last year when he told me that) but holy smokes he was right. I'm normally the Energizer Bunny but not last year. Between the lumpectomy (which was fine, recovered very quickly from that) and then the radiation, I didn't feel like myself energy-wise until the end of December.
0 -
BlueGirlRedState
Thank you! Pushing on.... good days and bad days and like you said, PUSH harder on the good days! Thank you!
0 -
Hello! I've now been on Tamoxifen for almost 4 weeks. I eased into it with 10 mg a day, taken right before bed, after I experienced horrible insomnia the first time I took the medication. After days with 1-2 hours of sleep, I started taking a Benadryl along with it, which knocks me out. I called the MO to be sure it's OK to take the Benadryl and the nurse said it was OK but that maybe melatonin would be better. I'm going to pick some up this afternoon. The insomnia is still there. My brain feels like it is disconnected most of the time. I am mixing up dates and names and can't seem to form intelligible sentences. It is worse in the morning. I don't want to blame it on lack of sleep -- it feels different than that and is more noticeable in the morning. My shoulders, knees and neck are quite stiff and I have joint pain, almost arthritic. My vision declined severely -- the first few weeks, I couldn't see clearly after waking up and I have a red rash-like ring around half my iris that comes and goes. I will see the MO in 3 weeks. I am hoping I can hold out until then. I just don't see myself taking this medication for five years. I work in a very high pressure position where being on top of things mentally is a requirement. My staff is amazing and very understanding, as is my boss but I don't know if they completely understand the implications of this for me. I have been playing tennis 5-6 days a week with the hope it helps. The only benefit is the loss of hunger pangs. I've lost about 6 pounds by mostly skipping dinner and not snacking during the day. And I'm having vivid dreams that I remember when I wake up in the morning - they are happy dreams. I need them. I honestly feel like telling the MO that I'd rather do chemo again than do 5 years of tamoxifen.
I should add that it's been a stressful few months. The first week after my last chemo treatment, we got hit with tennis ball sized hail. Over $40,000 damage to the house. Four weeks later, lightning hit the house, nailing an A/C unit, two TVs, two internet routers, two cable boxes, internal wiring, and a desk phone I use for working from home. I'm over it all.
0 -
Cricketdog, tamox seems to hit everyone a little differently, with some symptoms coming on stronger, lasting longer, or fading quicker than other people. However...do not fool around waiting to talk to your MO about your eye! Tamoxifen can is rare circumstances be very toxic to your eyes! Go to an eye doc and tell them you are new to tamoxifen and tell them this red rash in your eyeball is new and have them investigate. Eyes heal very well if there is a problem, but they also go south really quick if you don't stay on top of it. So please do not wait. This comes from someone who has lugged her hub to an emergency room with various eye injuries and inflammations many, many times over the year. The man simply cannot keep a chunk of steel out of his eye if there's any way he can possibly stab it in there! Have your eye looked at as soon as you can and not by your onc but by an eye expert!
0 -
Hello everyone, I’m new to this thread. I’m starting tamoxifen in the next week or so and just picked up my prescription yesterday. It’s for 20mg once a day. I’m sure this has been discussed umpteen times in this forum but I’m wondering what time of the day is best to take it. Morning, dinner time, or before bed?
0 -
Sugar, time of day is what time works for you. My pharmacist advised taking with my evening meal and that has worked for me. She was particularly adamant about taking it with a meal. Probably the most important part is to take it at a time when you won't forget to do so. I use a pill case to help as a reminder for my prescriptions and supplements.
0 -
Hi Cricketdog and Sugar,
I have been on Tamoxifen since 2/14/2018. I started taking it in the morning and was nauseous so I switched to bedtime. I have hot flashes and joint/bone pain but they seem to come and go in intensity. I can now pretty much go back to sleep after the hot flash hits. I have two to three per night which is not bad.
Cricket, I understand what you mean when you say your brain feels disconnected. After starting Tamoxifen I was having fatigue, word finding and memory issues that were so bad I thought I might have had some sort of mets to my brain. I talked to my MO and she suggested an appointment with a neuropsychologist. I spent a day testing with her; math, drawing, problem solving, etc. and it was very helpful. I found out I was having some cognitive issues and I was started on Concerta which has helped me immensely. I was resistant to starting medication but it has helped with the fatigue and I feel like I am back to myself at work! I was also told that women who have had problems with pms are often affected by Tamoxifen more than women who have not had pms issues. I had a hysterectomy because of fibroids when I was in my 40's and could not believe how much better I felt every month! No more crankiness, sadness, food cravings, etc. I never did anything about the pms, thought it was just normal and lived with it.
I still have hot flashes and joint issues but nothing that I cannot handle, and who knows, the joint issues may be my age! Good luck!
0 -
I've been on tamoxifen for 4 months. Last week I started feeling like swallowing was difficult. Today that escalated into a full on panic attack. Doc says throat looks fine and its just anxiety. I know difficulty swallowing is listed as a side effect of tamoxifen. Has anyone else experienced it? I find it pretty distressing.
0 -
Hi Scoop,
Tamoxifen can irritate the stomach and it sure does it for me. I have GERD/Acid Reflux and one of the symptoms can be the feeling like it's difficult to swallow, like the pill or food is getting stuck even without anything physically blocking your throat. I think it's sort of like getting spasms but not sure. I've had it a couple of times but I take medication to protect my stomach/throat from the irritation of the Tamoxifen. I've got 3 1/2 more years to go. Ugh.
When you say your doctor told you that your throat look fine what type of exam was done to check on your throat? I've had several endoscopies where they actually look down your entire throat and it's not pleasant. Why does your doctor think it's anxiety? i would get a second opinion because you don't want to have throat/stomach damage which can easily be prevented with stomach medication. I always remain upright after taking the Tamoxifen because laying down can also irritate the throat/stomach. Let us know what you find out.
0
