Bottle o Tamoxifen
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Tinydancer, I have swelling and pain in my fingers every morning and swelling in my ankles and feet every night. Not sure how to get that to stop. I am already over taking this med.
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Thank you Gardengyspy and Rina. Ok, this is important so I will keep the appt
I was just feeling silly and over paranoid! And....just tired of Doctor appointments. Before all of this I only saw my dr. once a year for yrly physical!0 -
Oh, get this everyone-
My surgeon said that breast self exams are not necessary if your gynecologist does a breast exam once a year.
This blew me away. This is from a doctor at one of the "top 4" cancer hospitals in the US!
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Gardengyspy; weird. My MO will be doing breast exams every 3 months for the next 2 years per the American cancer society recommendations. Gosh every doctor is so different.
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Hey!
Zelda33, I had an IUD removed about 6 weeks ago. I have been on Tamoxifen since February 1 2016. What are you wondering?
I also have a cataract starting up in my right eye, due to chemo. My eye dr. says we'll do a test yearly to watch its progress. Such good gifts still coming to me from this diagnosis and treatment. Sigh...
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Wow on the surg with the breast exams.. I have 2 docs checking me out. Since I had BMX I have my bs for life and my MO for life as well. I'm on the every 3 mo plan with MO for 5 years then every 6 mo for a couple or so after then annually till I'm dead. BS is every 6 mo until year 5 then annually till I'm dead. Pcp is keeping tight tabs on me. I had a gyn exam and u/s since I have cramps from time to time (no pd since Nov '15) so there is a baseline of when I started tamox showing # of fibroids and how thick the endometrium is. It's a good idea to have baselines where you can that makes sense. That way if something arises, they can see a timeline.
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I am also surprised at how different every doctor is on their recommendations. I didn't have chemo or rads but am on Tamoxifen, or an AI at some point, for 10 years. I see my BS yearly, my MO yearly, my PS every 2 years, my GYN yearly, and my PCP yearly. My BS, MO and GYN give me breast exams so my BS has me spread them out over the year so I'm basically getting breast exam every 4 months PLUS my yearly mammogram on the remaining breast which becomes an MRI every 3rd year. My GYN did a baseline TVUS about a year into Tamoxifen and found changes which eventually led to a total hysterectomy (best decision ever!). And he did a baseline bone density so we can watch that. And I have to see a dermatologist once a year for a full screening and an ophthalmologist once a year for screening. And every other year the ophthalmologist does a very in depth screening to double check for any Tamoxifen caused changes. And last, but not least, I've been checked over by a cardiologist just to be sure there wasn't anything to worry about as I went through treatment. And they said they plan to continue this plan indefinitely! As my dad's oncologist friend said when I was diagnosed "The silver lining to all this is that you will more than likely outlive all your peers because your health will be a top priority for so many doctors." So there's that. Fortunately I love all my doctors and enjoy going to appointments because I learned early to treat myself after each appointment....whether it's with a fancy cookie or a cute tshirt or a manicure or just going to a movie. Makes all this stuff much more enjoyable!
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Carlsoda. . .I had a baseline US early on with Tamox. I have a history of Ov cysts however. If your MO recommends it, you should go. Like you I had not seem my OB for many years before diagnosis.
I see MO again next week to discuss all my supps, my stats and the joint/nerve pain.
Scottie
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I found this about lavender and tea tree oil.
http://www.cancer.gov/about-cancer/treatment/cam/patient/aromatherapy-pdq#link/_51
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Hi everyone!
I am a newby here and recently diagnosed. I have been reading a lot on this site and really found a lot of useful information that I couldn't find in my own country cancer related sites.
I just started tamoxifen yesterday and waiting for ....new experiences related to SEs. Anyway since there have been a lot of discussions on weight gain related to tamox I wanted to share with you the opinion of my doctor when I asked him. More or less he said that athletes take it to enhance their performance so it cannot add weight, plus he advised me to try not to gain weight because it is related to cancer recurrence. So we' ll just have to wait and see!
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Yes, some athletes and bodybuilders take tamoxifen, but this is most often males who are taking androgenic agents. Testosterone enhances muscle growth and performance. Taking testosterone results in undesirable SEs for males, including gynaecomastia (growth of male breasts). To counter this effect, hormone antagonists and modulators are taken, including anti-estrogenic drugs, such as AIs and tamoxifen. All of these are considered performance enhancing drugs and are banned substances under the World Anti-Doping Agency. Any athlete testing positive would be suspended or banned. The majority of athletes are clean, aka natty. Steroid use is more prevalent in bodybuilding than sports. I do recall a major league baseball player being suspended for tamoxifen a few years ago, so it does happen. Most athletes train and perform at a high level of intensity, so weight gain from tamoxifen would be very unlikely. Experiences relayed on bco appear to indicate more women gain weight on hormonal therapy than maintain or lose. My personal experience from my few months on tamox was zero impact on weight, but my metabolism is not representative of the majority of women with bc.
greenlilly, sending good wishes that you tolerate tamox well with minimal SEs. Maintaining a healthy body weight is absolutely recommended to help prevent a recurrence.
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what is funny is weight loss is listed as a SE on
Chemocare.com. I actually have lost weight since I have been on it.
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hello, everyone, I just finished 5 years of hormonal therapy, 3 yrs on arimidex and 2 yrson Tamox. I stopped in June and now my thyroid hormones are off the chart. Drs have adjusted me on different levels of levethyroid. Still I am not doing well with weight due to thyroid. I am gaining now that I am off Tamox. Really messed up. Does anyone know if Tamox can affect thyroid hormone?
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Having been on various meds, including one where one SE was death, it's the norm for them to list everything possible. If 1 person got it, it has to be listed.
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Kimmer, Yes! I am having significant Achilles pain. I believe it is from the tamoxifen which I started May 8th. I'm supposed to be walking for exercise but the achiiles pain makes it difficult. Wish i could find something to help.
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Anyone have leg cramps at night? I have been trying to drink plenty of water so I am not dehydrated but that does not seem to help
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My joint pain is better when I exercise. Some days that means just a slow treadmill, other times faster walking and hiking. Can't wait for fall so I can really hike again. I'm currently trying to detox with daily green tea.
Scottie
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Nancdancer,
Yes, I have been having leg cramps probably 3-4 times a week at night.
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Nancdancer, have you tried magnesium supplementation? Many experience some reduction (to varying degrees) with magnesium. There are many forms, many of which have stool loosening properties, so dosage is often taken to bowel tolerance for these formulations. The various formulations have differing bioavailabilties and absorption properties as well. Magnesium glycinate has high bioavailability and absorption and doesn't have the stool softening effects. Magnesium oxide is milk of magnesia - definitely strong laxative effect. Magnesium citrate is used in some laxative preparations, and while it is often taken as a supplement, it does have stool loosening properties. Magnesium sulphate is Epsom salts, so not ingested. Magnesium is the center of the chlorophyll molecule; dark green veggies and herbs are high in magnesium.
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down dog thanks for the explanation on magnesium, I will give it a tr
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I had joint pain in my knees, ankles, neck, and fingers (fingers only in the morning) and I found that one of these have improved my pain down to an annoying reminder of my aged body.
Acupuncture
black cherry extract
glucosamine
garlic
frankincense oil
1 of these is helping or all are, worth a shot
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I started Tamoxifen 6 months ago but have cut back to 10mg (half dose) because of SE's. Just noticed a mention of "green tea". My MO told me I was not able to drink any Green Tea or Grapefruit Juice whilst on Tamoxifen. Anyone else been told that?
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I've been told Grapefruit
I'll have to ask my naturopath about the interactions of green tea extract and tamoxifen, I see him today (good timing)
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wke, I started at 5mg and then increased 7.5 (not MO-endorsed). I never made it to 10. I quit, took a break and tried again starting at 5, but couldn't tolerate the SEs. My risk reduction wasn't enough for me to even consider AIs. Your stats aren't posted, and while it is an individual decision regardless of dx, many MOs push hormonal therapy even for very small risk reductions. Chemo is dosed by individual body surface area,and yet we are all given the standardized 20mg dosage of tamox, which I think is crazy. I realize that research and trials for varying effective dosages of an off-patent drug aren't going to happen, so we're stuck with the evidence-based 20mg. Beat wisheson10mg and whatever dosage (0-20) you decide is right for you going forward.
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If magnesium glycinate helped you with hot flashes, how long did you take it before you saw results
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Nancdancer, if you try out magnesium, I'd suggest starting at half or lower of the recommended dose to check your tolerance for stomach upset, loose stools or diarrhea. If you take it at bedtime, you will know the next morning whether you've taken too much. Build up to a higher dosage as you test your sensitivity to increases.
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I'm starting next week, and of course very nervous. I'm worried about hot flashes and night sweats since I don't sleep well anyway!
I'll try the partial dose first. Good idea.
What cooling products actually work? I see pillows and neck wraps all types of products on the market, I would love any recommendations and I'll order from Amazon tonight!
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Thank you downdog for the info about tamoxifen that was really interesting, you must have a point there. So like I said earlier we' ll just have to wait and see. First week on tamo plus radiation sessions and everything seems all right so far. By the way I wanted to mention that in the instructions of the tamoxifen I get in Europe neither weight loss nor weight gain is mentioned. It's funny because I see that in the States weight loss is mentioned, am I right? And the one I take is one of those mentioned in brackets to all of us who take hormonal therapy, I don't know if I can say the name or it' ll be considered a commercial.
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My MO just lowered the dosage from 20 mg to 10 mg due to muscle cramps. I am due to see her in 1 month about the treatment plan, depending on how I tolerate the lower dosage. Did anybody else do this? I am concerned about risk of recurrence on the lower dosage... And yes, I've been taking magnesium and turmeric and exercising ever since I started on tamoxifen 2 months ago. The cramps were every night for 5 weeks, stopped altogether for 2 weeks, then resumed
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On the news last night, there was a very short news story re hormonal therapy following breast cancer causing hot flashes and weight gain - DUH...... However, also mentioned breathing problems. I have complained to my oncologost, to my PCP and to my cardiologist who put me through many expensive tests last year. At no time did anyone suggest that my shortness of breath could be caused by tamoxifen. I just saw my onco and she is giving me a 3 month rest from tamoxifen. She said it should be out of my system in 2 weeks but my breathing has slightly improved already. I also have joint stiffness and pain (my wrist literally locked up one night and I could not move it - next morning it was fine other than the usual.In 3 months, she will test my hormone levels and do a bone scan to see if I can take one of the AI drugs (have had osteoporosis in the past, hence the tamoxifen).
I guess what I'm leading up to is that the doctors want us to stay on these meds and tend to downplay the side effects. Has anyone had better health by making this switch?
I also posted this on the triple positive forum.
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