Bottle o Tamoxifen
Comments
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I had a cortisone shot in my shoulder and it worked wonders, BUT I only let them give it to me after an MRI to be sure nothing sinister was going on in there. Generally a lot of joint pain issues are diagnosed clinically based on symptoms, but with a personal history of breast cancer, you might want to rule out mets before any treatment. I hope you get some relief soon!0 -
Gemini and ndgrrl - My MO wrote back about melatonin today after having the pharmacist research it...."conflicting results without a clear answer". She also said : "Bottom line, if it helps you sleep she thinks it is OK". She attached several studies as well ,which I will read later.My decision: since it is helping me sleep and I need that ( I was ALWAYS a night owl/imsoniac before BC) I am going to stick with my 3mg unless I hear something different.
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emegram-I'm so very happy to report YES!!!! I can again move my arm, don't know how long it's going to last though. I have taken my last Mylan brand tamoxifen and have started on the Teva brand. So far and it could just be a coincidence but my joint pain in my knees has been worse today.0 -
Ty for the information on the side effects of Tamo. I was curious because my cousin went and had a complete hysterectomy and her cancer was stage one DCIS, grade 2 - ER, PR and Her2 postive.
My MO never has mentioned anything about a complete hysterectomy. I have had a partical hysterectomy so I do not have my uterus and no longer have periods but I do have my overies.
Lenn, Glad to know what Melatonin is ok to take as I also have some. I am thinking I need to find some cr though as it doesnt hold me through the night,0 -
ndgrrl, I started the controlled release melatonin and have been doing better in the sleep department.
At Runfree's suggestion, a few pages back, I ordered mine from Amazon...about eight dollars and delivered quickly. Hope it works well for you.0 -
I read about controlled-release melatonin in an article in Prevention. I just found it online, here (slide 5 of 8):
http://www.prevention.com/health/health-concerns/ultimate-owners-guide-menopause?s=50 -
Thank you RunFree and Annette for confirming the lapse in appts with MO. I had to travel for business last week, and flew for the first time. I met with my PT this week, and I have lymphedema in my trunk! Nothing is easy this year. So I think I should notify RO, MO, and BS. I also have a stitch emerging from SN incision, which I noticed back in August and did advise BS.
I hope that one day there will be a central port to allow patients to send one notification, which is reviewed by all medical providers. Then the issue will be addressed by the right DR, and all DRs have our history, tests etc.
As a patient, though we are all strong, this added stress is rough!0 -
It's been a couple of years since I've posted. For the most part, things have been ok. I've been on tamoxifen since September '09 with manageable side effects. However, lately the bone and muscle pain have gotten significantly worse. Pain in my ankles but mostly pain in my hips. Last night the pain in my hips was pretty bad. Anyone else have an increase in pain this far into tamoxifen treatment? Is this normal or should I be worried?
Thanks in advance ...0 -
Left hip, I find it hard to walk sometimes. I been thinking I might stop Tamoxifen for 6 weeks and see if it feels better. Sometimes, I wear a hip/thigh wrap and it feels better. Motrin around the clock, daily.0 -
Haven't posted here in a while. Just thought I would check in and see how everyone is doing and also because I wish I could go back on Tamoxifen!
But since being diagnosed with a met on my femur (at the hip) the MO has asked me to try Anastrozole (Arimidex).
With Tamoxifen I had lots of side effects but somehow I found them manageable.
Since the switch (now into my 2nd month) I've had terrible hot flashes (been meno since chemo 2009), bone pain (both hips), migraines and the worst one - HAIR LOSS!
It's funny (strange not haha) to me to read on here about everyone else's side effects and how different we all are.
On Tamoxifen I had headaches (but not as bad as now), blurred vision, hearing loss, excess fluid (sinuses & ears), hands, feet and leg pain.
Sounds like a lot but they came on slowly and came and went during the 3 years I was on it. I took breaks too - before surgeries - and it was nice to feel a bit "normal" again. When I started up again the side effects resumed but they were bearable.
After just a few weeks on Anastrozole I started feeling the bone pain, headaches and hot flashes. The hair loss (pisses me right off) just started in the 2nd month and I've been checking for bald patches (none so far) but it's certainly not like chemo hair loss.
Maybe this will just be an adjustment time for me and then it will level off like the Tamoxifen did? I sure hope so!
Anyway wishing you all success with your Tamoxifen tolerance and lessoning side effects!
Marie0 -
Marie - my little heart just broke. I've been on Tamoxifen just for a short time and *it* is causing severe hair loss (I've lost so much that my hairline has receded by 2cm) but after my ooph next February my MO is planning on switching me to Arimidex... and I was hoping hair loss wasn't an Arimidex SE...
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lahela, have you tried biotin for hair loss. Here it is an over the counter drug and is also good for finger and toenail issues.
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chabba, a few people have mentioned it but I haven't found it here. It's on amazon, though, so I'm going to order some and if it works I'll try to track down a local source.
I've been feeling like I'm walking around in a mental fog recently, with frequent memory lapses and trouble maintaining a train of thought or concentrating. Another SE rearing its ugly head?0 -
lahela - I also had massive hair loss when I first started Tamox. I am also taking Biotin and for me, it has worked wonders. I take 5000mcg but you can take up to 10,000mcg. Give it about a month before you really see results. Amazon is a great source to buy all kinds of stuff - I love it.0 -
Lahela, I have also experienced cognitive fog since being on Tamoxifen (am finishing up my second year), along with poor concentration, poor short term memory, and difficulty following through with long term tasks that are anything but concrete. I now wonder if I have always had subclinical ADD which has blossomed! It is very annoying, especially since I was always the "go to" person at work and home for remembering names, dates, following through with projects, etc. No longer! I am wondering if my brain will return to a semblance of its old more functional self when I am finished taking this drug. Does anyone have any insight about cog fog post Tammi?
I think that for me this is one of the more frustrating side effects along with the sleep issues, and intensified allergies, including continual skin itching. I had some hair loss last year, and my MO allowed me to take a three week break from Tammi, after which I have not seemed to have a problem in that department. It all seems so capricious and unpredictable.
I hope you can get your hands on the biotin since, like Jo, many sisters have found it helpful.0 -
Lacey, I also suffer the brain fog so terribly that I decided to cut my dose in half.I know I should check with my MO first but I was afraid she would suggest Arimidex.So I convinced myself half is better than none.I originally wanted to do the other half in the evening but I can never bring myself to taking that second half.It amazes me that there is only one proven dose for everyone.I never took prescriptions meds or even supplements.I seem to be very sensitive to meds even Tylenol.But when I forget to take my Tamoxifen I really feel like myself again.Not tired not foggy.So rest assured it isn't permanent.
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Lacey, as you may know, I've had awful itching on Tamoxifen. When you stopped the med and then resumed it, did the itching return just the same? And have you found anything to treat that symptom? I'm doing well currently on a wide-spectrum antibiotic (Bactrim), but I don't want to stay on that indefinitely.0 -
RunFree, I am so sorry that you are still experiencing that level of itching. Mine is much less in terms of intensity...and mainly around my neck now. I actually did not start with the allergies and itching until after my Tammi vacation....shortly resuming it. That was my new side effect. I keep hoping that the winter will provide relief, since I'm assuming it is allergy related. Is the bactrim at least helping you? I hope you find long term relief......and many thanks for your CR Melatonin suggestion!0 -
Josie,
I asked you earlier what company makes your Tamoxifen? It is worth trying the other company because they have different fillers. I think it is now made by 2 companies, Teva and Watson?0 -
Lacey, thanks for the info. It is interesting that your itching started after your Tami vacation, whereas I'm half-counting on a Tami vacation to clear mine up. But I know there are a zillion variations. The Bactrim is helping a lot. My spots are gone, my raised pink areas are gone, and best of all, I am not itchy. I haven't been using my steroid cream at all. If I could get off the Bactrim I'd be happy. Last time I tried, the rash and itching came back, but I want to try again soon.0 -
Hey all,
I was diagnosed with breast cancer in 2011. I started on Tamoxifen in Sept 2011 but had to go off of it in November 2011 because of a large ovarian cyst. Believe it or not my after fertility treatment for my 2 children, 2 miscarriages and my husband's vasectomy, I found out I was pregnant in January 2012 when I was going for my ultrasound to f/u on my ovarian cyst!!
I went back on the Tamoxifen after I had my 3rd child in Sept 2012. Again I had an ovarian cyst and had to go off of it. I am going to try 1 more time after my reconstruction surgery, which is scheduled for next week. If I get a cyst again, they may try me on zolodex (I think that is it). I am very worried. I felt old overnight when I was on Tamoxifen. So tired and muscle pain. Has anyone else experienced any of these issues on Tamoxifen?
Jess0 -
Hi Jess--That's quite a story! Did anyone have an explanation for your surge in fertility? I find that very interesting. Although I have not really muscle pain or fatigue, I wanted to say that I've read people's side effects can be very different when the resume Tamoxifen after not taking it for a while. Since you've taken it twice, you have already tested that, but it still might be different/better for you this time.0 -
hi Jess -- I don't have experience with the symptoms you describe on tamoxifen, so the only advice I can offer is to try a different brand of generic in case one of the fillers is causing a reaction for you. There is a thread about different side effects related to the various brands. Let me know of you can't find it, and I'll locate a link for you.
Congratulations on your happy surprise baby! Many blessings to you and your family.0 -
after reading a lot of this thread, I'm really nervous about starting tamox. I just took my first pill. Just 9 years and 364 days to go.0 -
SophiaMarie, I truly think that you should start off not expecting any SEs at all. You could easily be one of the women who have little to none. Many of the friends and relatives I know who took Tamoxifen beore I did, sailed through their treatment. I was expecting that...... and you might well be one of those lucky ones! I hope so.....good luck!0 -
I hope so too Lacey!
It was interesting to talk to the clinic's pharmacist beforehand - a number of my supplements I had to discontinue taking because it would increase the se's of the tamox. (Like turmeric and garlic). Frustrating though. Ten years is a long time! Is anyone else on for that long?0 -
Any explanation how garlic and turmeric interact with Tamoxifen? Its very interesting. How come the Tamoxifen doesn't have a warning? Am not questioning the correctness - I think its great the pharmacist asked about supplements - mine didn't.
What about Tamoxifen and Vitamin D?0 -
I don't think vit D is an issue - at least it wasn't brought up - and I was retested for D deficiency and might need to start taking that as well. And I had a long list of supplements I like to take - when I kept asking if they were ok to take with tamox, they just had the pharmacist come in and go through my list. She explained it as having something to do with how they are all metabolized by the liver - that they use the same enzymes to be metabolized and these supplements would bind to the enzymes and keep the tamox from being metabolized - so it would build up in your system. And that would enhance the side effects since it would increase the tamox levels in your body.
I just looked over my list and vit E is another one we can't take, though I'm not sure if that one is for the same reason or not. I had a multiple mineral liquid that included Boron - and she said Boron increases estrogen levels. Green tea is fine, but not in a concentrated pill form. Frustrating that so many "good" things have to be avoided! I did ask about Benadryl, and she said occasional use is ok, but not everyday.
I had been hoping to take pentoxifyline with vit E to reduce some of the awful fibrosis, and then started reading about vit E inhibiting the effectiveness of tamox - and thought the same thing -- why isn't this listed on the labels?! I would definitely ask if they have a pharmacist on staff that you could talk to! I found it so helpful.0 -
I was also told no, Boron, Copper or Iron in my multi vitamin. Also they told me at MD Anderson- no DIM or tumeric with Tamoxifen.0 -
Yikes, my MO is the one who told me to take Vitamin E to help with the hot flashes.
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