Bottle o Tamoxifen
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Anyone have elevated liver or kidney enzymes since being on Tamoxifen? My Urea and BUN were elevated; now getting tested for ALT and AST and cholesterol plus getting a liver ultrasound. I guess fatty liver is one concern. Ugh.
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Kat, yes my GFR was elevated from57 down to 42. I will be re tested by my regular dr in a week or so. My MO said that Tamox does not cause kidney problems. So, I am thinking it might have been the colonoscopy prep after reading about it online.
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Interesting Stage 1... I hope that your numbers pop back up. My onc does seem to think Tamoxifen is hard on the kidneys, but I have not found much info from Dr. Google.
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katcar0001, I had elevated liver enzymes. Doc said to check again in a month, and if they were still elevated, they'd do a liver ultrasound. I stopped drinking alcohol completely (although I was not a big drinker by any means) and a mo th later, everything was back within normal range. Doc said that liver problems are an SE of tamoxifen
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thanks, Kat. Interesting some MO saying it does affect the kidney and some say Tamox does not. I can't find any info online that says it does, so I am still taking it. Nutritionist says cut down on meat and no alchohol not much dairy. Bummer...
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My knee joints hurt badly. I first thought I had burst my ACL in my right knee last October. Since returning to work this month my left knee joint has started hurting too. It seems worse in the a.m trying to get out of my bed and just before my shift is over. (I am finally back working as a licensed massage therapist with no LE problems. I was told lymphodema could end my career. I took a chance and zero lymphodema flare ups.) Back to my knees....My knees hurt so bad it is hard to get up my apartment stairs after work. I take one step then stop. Then another step. It is very hard at work not to limp or let anyone see I am having these problems as it could cost me my job. It is obvious to my coworkers somethings wrong but they may assume a sport injury. I had my right knee xrayed after I thought I tore the ACL. The knee doc said I had athritis in it. Now both my knees hurt badly. I have been taking Tumeric and Ginger for months. I started Tamoxifen a year and a half ago. I have also gotten severe reflux episodes that required a prescription for relief. My Oncologist started me on Gabapentin several months ago because the SE at the time was severe hot flashes at night leaving me soaking wet and fluish feeling in the morning. Gabapentin has totally taken care of that problem. I get hot flashes but not any where near as severe as before. I also get calf and feet cramps virtually every night and during sex I am careful not to tighten my feet or calves during the big O. LOL My feet cramp up so bad. At night I stretch my legs across the coffee table watching tv. If I cross my legs and put one foot resting on the other I usually get a foot cramp. Yes these cramps hurt and lock my feet up in contorted positions. It is embaressing to be 47 yrs old and look in reasonable shape yet people stare at me trying to get up the stairs to my apartment if they are outside for a night stroll. People notice a slight limp at work sometimes. I pretend they are crazy for looking. LOL Now that both knees hurt I walk like Pinnochio and coworkers look but dare not say a word because I act like nothing is wrong.
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Katcar and Stage1. . .I asked MO last week what she tests for -- liver, kidney, complete blood count, and cholesterol every 3-4 mos and every other time she tests for the tumor markers. I can't touch alcohol on Gabapentin anyway -- not that I drank much, but no wine now either. I'm vegetarian and have a mild milk allergy so those two are covered. If it's not one thing, its another.
Originally MO said 10 years on Tamox, Last week she said 5 years and then switch to AI. When I cringed and mentioned the side effects of AIs, she assured me that the vast majority of those on them do great and have less SEs than Tamox. If mine our worse, she will switch me back.
So, almost 1.5 years down on Tamox. . .3.5 to go, and then AIs. Oh boy. My mantra is. . .I am blessed, , ,and I repeat that as I often as I need to when complaining about SEs.
Scottie
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In 2010 I was diagnosed with BC. I had both removed and all went well. I had a cat scan and all was clear plus my ph level was back to normal. I chose not to have radiation or chemo. I have Factor V Leiden, Factor II, and Heterozygous mutated genes. Because of this and the fact that my scan was good I did not take Tamoxifin as suggested. The past five years I did regular CA 27-29 blood work and it always came back in the 30's. Last December 2015, it jumped to 81 and I had a scan done and it shows BC has gone to my spine in two places and one breast lymph. My Oc suggested Latrozole to reduce my estrogen, which it did to 61. I had aches, pains, and a case of shingles. After four weeks I quit taking it. Now Tamoxifen is next in line if I decide to do so. I detoxed with activated charcoal. Now my GP is researching the chance of blood clots and taking a blood thinner for 1-3 months. I am considered stable at this point. Anyone else have Factor V and use Tamoxifin with blood thinner?
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Bcky- I feel your pain. After a CAT scan I was told that I had a small spot of arthritis on my hip. Never felt any pain until taking Letrozole, now it hurts all the time and walking with a limp. I have been off of Letrozole for two months and pain is not decreasing. Sounds like you are having a reaction. In researching Tamoxifen it was suggested that anyone given Tamoxifen should have genetic test for cyp panel done to see if the body processes proteins and enzymes fast, normal, or slow.
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Wow thats really interesting. Where di you read that and why aren't docs running that test???
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Wow thats really interesting. Where did you read that and why aren't docs running that test???
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Scottiemom - I think your onc tests even more than mine. Like you and Stage1, I don't eat much dairy or drink much alcohol. I suppose I could go completely vegetarian, but my sugar levels are a little high, so I cannot do too much carb. I am really thin, which makes the high sugar levels confusing. I guess I am insulin resistant, but I've been too focused on cancer to deal with it. I find it so hard to find the right diet as too much protein can also elevate kidney enzymes.
I think my onc is switching me to the AIs very soon with ovarian suppression. My ovaries are still cranking out too much estrogen. I pray that I can tolerate the AIs. I am getting one more consultation before I decide on a change of course.
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you guys all seem to be much younger than I, I am 67, I am approaching my 5 yr mark on AI and Tamox, 3and a half yrs on Anastrosole and more than a year on Tamox. I switched to Tamox because of severe muscle and joint pain. I am not sure how much longer I want to stay on Tamox because of not knowing if it is affecting my kidneys, just diagnosed with kidney disease. Osteopenia also developed while on AI. Becky, I went thro pain in my late 40's, saw Drs and specialists, no one could diagnose me, but ended up calling It fibrmialgia. Sorry bout the typos, iPad is lagging. Oh,yea, be careful about tests that require the dye injections, I was warned by a dr that that can damage kidneys. Also, when you are at the age you need a colonoscopy, phosphate prep is hard on kidneys. Reading online there is an alternative prep easier on the kidneys. Too late for me
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I have been on Tamoxifen for about 2 months, I had the hot flashes first, then extreme tiredness. Now I've been having headaches, has anybody experienced the headaches?
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Katcar. . .2nd opin sounds like a good idea. I did two 4 month rounds of lupron last year. Very nasty drug, at least for me. Fingers crossed, however, as I have stopped my cycles. More than 8 months. If I went no carb I'd lose 20 lbs or more. . .trying to lower carbs via Weight Watchers to lose the 10lbs I gained on lupron.
Good luck.
Scottie
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Mells31 - I started having headaches and insomnia around month 3. I switched to taking it right before bedtime and both side effects got much better. Sometimes switching the time of day helps. I didn't think it could make a difference but was glad I gave it a try.
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Scottiemom a couple of yrs ago their was some shortages & I ended up with the Watson brand. The SE s were almost as bad as when I was on AI s. Ever since then I have my onco put on my prescription not to refill with the Watson brand and instead I get Teva. I still have small amt. of SE s but nothing intolerable with the exception of upon entering my sixth year my hair has started to fall out at an alarming rate. The amt. I had after all my treatments was certainly nothing like I had previously. Next appt. with onco we are going to have "a come to Jesus" conversation about the possible chg. in Tamoxifen to something else otherwise I will be completely bald by the end of 10 yrs. Grrrrr..........
I have wondered about your "name" so now I will take this opportunity to ask the question.........do you have Scottish Terriers?
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Thank you, Scottiemom, and good luck with your low carb diet and weight loss plan. I am sorry that Lupron was so awful for you! I hope your cycle never returns.
NormaJean - I'd be pretty upset by that much hair loss! I hope it stops shedding.
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Thanks Ksusan, This is very helpful! will be sure to keep up the exercise and use the compression garments! I appreciate the response
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Bcky - What strength Gabapentin are you taking? I had your exact same experience when I started Tamoxifen. I am now taking 600mg Gabapentin at night and 75mg Effexor in the morning. My pain is pretty much gone but still having hot flashes so will increase the Effexor to get through the summer. You need to stay in touch with your doctor (complain) until you get some relief.
Mels31 - I had headaches that came and went all day but with the above regimen, the headaches are vert rare.
BTW, I take 10mg Tamoxifen morning and night and I think that helps a lot also.
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katcar....just intersted. How did you know your ovaries were cranking out too much estrogen?
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Stage1 -I don't think I have fibromyalgia as none of my other joints hurt and I (deep tissue) massage clients all day.
Blownaway -I take 300 mgs of Gabapentin. I am afraid to double the dose because I noticed taking Gabapentin I wake up in almost a stupor. I will ask my Oncologist because maybe I need to take a double dose. I take 150 mgs Effexor.
I had a real bad headache last week where if I turned my head left or right I felt I could faint. It went away and a massage therapist told me it was Trigger Points in my neck. I had two massages and it is gone
Scottie Mom -I took Lupron once long ago in 2013. It was before my Breast Cancer dx. I had really heavy periods. So bad that often I feared finishing a clients massage in an hour ; afraid I would leak through. It was by far the most horrific drug I have ever taken. I had one of the side effects I have now but 10x worse.... Knee Joint pain. I opted to bleed heavy than take another injection of Lupron. There is a forum on Facebook with Lupron Survivors. It has caused some women truly terrifying consequences. Their teeth falling out and/or crumbling. Permanent all over joint pain. etc. etc. There is a huge movement to pull Lupron off the shelves because of (admitted by Lupron in a lawsuit) false case study results geared to getting FDA approval. Some Phds are very against Lupron.
I remember then telling all the Phds that Something is wrong. They blamed it on uterine fibroids. I remember telling my PHds that something is terribly terribly wrong. They would send me for a mammogram and nothing. Normal Results. The truth was according to my Oncologist is that I had Breast cancer for 6 and a half years despite normal mammograms because Lobular Breast Cancer does not show up on mammograms for many years until it is severe. It grows like a spider web then a lump. I found the lump.
My naturopath did bloodwork and never said anything about my super high red blood counts about a month before I found out I had Breast Cancer. We/He assumed it was because of my extra heavy periods that I was making allot of red blood cells. Something in me decided to research and super high red blood count is a sign of Cancer. I also had what felt like a hair in my throat for weeks. Then I found a huge lump in my breast. We know the rest.
The weirdest thing was I knew I had cancer before the Phds knew but I was afraid to tell the Phds. You see after I saw my bloodwork of high red blood count and researched what that can mean and then read about the permanent sore throat. Sore throat can manifest as a feeling of hair in the throat.I was afraid they would say I was a hypochondriac. I just knew I was beyond tired: dead tired. I did not feel well. I felt like the walking dead. I was researching cancer and thought about seeing a cancer Phd. Funny thing is that after my BC dx and before the Oncotype Score they sent me to see the chemotherapy Phd I had read about online previous to my BC cancer dx.
I quit one massage job and start another this week. The stress at my last job was overwhelming. I was there 3 weeks and knew I needed to quit. Massage Therapists are not loving to their coworkers as they are to their clients. It is a cut throat highly competitive job market for therapists. They were upset to lose me and angry that I quit as I have good client reviews. I found a Massage place that seems far less stressful and far more elegant. I cannot/will not have that stress load in my life anymore. I did it for years and believe that is part of the reason I got breast cancer to begin with.
I thought I tore my ACL joint in my right knee at an outdoor concert walking up the stairs because I tweeked it wrong and heard it pop. Now I believe it is Tamoxifen as Both knees hurt more.
Blownaway- Do you feel almost knocked out from the Gabapentin after you take it and in the a.m? I take Tamoxifen at night and Gabapentin just before bed.
All the Ladies here- My friend from the BC group I attend assumed all the joint pain was from her AI. Then she found she had BC in her liver and bones. The Oncologist said it was not the AI but bone cancer causing the aches and pains.What is most disturbing is she did chemotherapy and she was on AIs for four years. Creepy; Scary. Another friend of mine in BC group was put on the wrong chemotherapy for 6 months. They had to do the lumpectomy despite her tumor not shrinking. Turns out from the surgical biopsy she was not Triple Negative but Er Positive. In that time it spread to her lungs and she died last month.
I had an MRI two weeks ago as mammograms do not work for me. I have to have a mammogram before I can have an MRI according to my BCBS insurance. The mammogram and MRI of my chest was normal with no cancer. I have a bit of faith my knee pain and leg cramps are not BC spreading because it is really unusual to get BC in your knees and below. I do fear about a spot the optician found in my eye. A shadow. much like the shadows they found on my ribs on the first MRI before my mastectomy. The oncologist determined after a Pet Scan that I was Stage 1 and my ribs had a shadow from a previous injury and not cancer. Yet I cannot ever remember injuring a rib. I can remember injuring my eye badly when I was a kid but I am not sure which one. The optician thinks it is a spot from an old injury. Yet Lupron caused me to have spots in my vision for a good month until it left my system. There have been cases of women losing partial eyesight from Lupron. My optician last saw me before my BC dx. Yet if I had BC in my eye the Pet scan would of lit up.
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Bcky - So scary all that you and your friends have been through. I am sorry Lupron caused so much damage--I'll be avoiding that one if possible. I understand there is also a pill that shuts down ovaries. This is an area that I am not at all familiar with so will be doing a lot of reading this week.
It is very interesting about the red blood cell counts. Mine were also high. I need to have that re-checked.
dtad - I have a hormonal panel run every few months. My estradiol is high--down from where it was, but still high.
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Which Phds? I'm a little confused and want to understand.
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katcar- I know. Scarey. My Support therapist from another Cancer Agency reassures me that what I am experiencing in that BC group is not common. That Stage 4 people can live many years. That the deaths etc. in that BC group are not common. I stopped going to that group. One of the gals with IBC her son recently killed himself. I will not ever return to that group.
Lupron is a thing that I will never touch again. I would never tell anyone what is best for them. I do know that Lupron and the bad experience I had taught me to research everything before I agree to it. Yet I am on Effexor and other drugs that I know are neccasary (can never spell that word right) and have only researched briefly. Before my Oncotype came in a Chemotherapist told me she did not care what score that I was going to get. That I had two tumors. One with grade 3 cells and a micromet in a lymphnode. That I should start chemo right away or I could die in a few years. I am at the 1 and a 1/2 year mark NED. I chose not to do Chemo but rely on Tamoxifen. Some Phds say Tamoxifen is chemo. Some Phds say Lupron is chemotherapy.
There are lots of women that do Chemotherapy and end up Stage 4 like my friend. Chemo does not kill the mother cancer cells. Only the sister cancer cells. Like anybody else I had to play the pick your poison game in order to be in remission. I had to make choices that none of them seemed healthy; totally safe and certainly did not offer a cure.
I take Tamoxifen Religiously. I am willing to suffer any SE's. Even though I had a mastectomy I feel because I did not do Taxotere as suggested by the Chemo Oncologist that I am at greater risk than my present Oncologist tells me. My Oncologist says I have a 10 percent reccurence risk as per my Oncotype reading in which the worst tumor was sent in for pathology. I had another friend in that BC Group who decided years ago based upon her research when dx'd that she would not do Tamoxifen. She now has BC in her hip. She is the type who eats right; excercises and keeps a great mental attitude. I have no idea what I am doing in Cancer World except I am sure I don't want to die.
I wonder if anyone has thought about this aside from me?...Why is it that all BC patients get a 20mg dose of Tamoxifen despite height and weight? That a tiny person gets the same dose as a big person.
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NormaJean. . .I luv Scottish Terriers but don't have one. Both my son and I are allergic to dogs.
I was actually tolerating SEs on Watson brand for months. As near as I can tell my current script is Watson brand under their new name Activis. I need to check with my pharmacy.
Blownaway. . .I may have to try splitting the dose and taking morning/evening.
Scottie
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Scottiemom.....hope you all enjoy. This is Madison & Maxwell at Christmas a few years ago. They both have passed on. I also had a Scottie when I was a little girl.
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Effexor. Who is using this prescription and with what results? I started tamoxifen about 6 months ago and have been tolerating it reasonably well except I find I'm more susceptible to irritability and lack of patience. I discussed this with my GP and oncologist and each agreed that a low 37.5mg dose of Effexor was the solution. Initially, I was happy to consider it but then I decided to do some online research. It sounds like for some it can be a very difficult drug to deal with, especially with withdrawal if one decides to stop it. My oncologist remarked that I may have to up the dose to 75mg over time as this was common. I bought the pills, but have yet to properly start them. I feel I've been through a lot in the past year with BC and really don't want another problem to deal with in the form of pills or their side effects, etc. I'm not depressed exactly, just more moody than ever before. The irritability is "irritating" without a doubt, but I'm just wondering if Effexor is going to bring with it another group of "irritating" issues. Just wondering what this group has to say about this anti-depressant and its pros and cons.
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Cute Scottie NormaJean. . .I might have to overcome my dog allergies one day.
Scottie
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Question - has anyone talked with their doctor about taking supplements as we move forward post treatment?
I just finished radiation, will continue Herceptin until October and have started on Tamoxfien. Did your doctor recommend taking any supplements? MY MO told me to stop all supplements when I was first diagnosed. Should we be taking calcium?
Thanks in advance for sharing any advice you received.
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