Bottle o Tamoxifen
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Hi all. I just posted on another board, too, so sorry if you are reading this twice! Stopped rads in late May and started Tamoxifen on the 1st of June. I had fatigue, sore muscles and joints, and numbness in the fingers of my right hand (cancer side). So my MO took me off Tamoxifen for a month but I didn't feel that much different so I'm back on. Yea. I had some blood tests (like for RA and Thyroid problems) which were normal. So now my MO doesn't think that it's the Tamoxifen but I'm just not sure. It seems unlikely because if I quit for a month and the symptoms didn't get better then maybe it's not the Tamoxifen. But what, then, is it?
This is making me crazy. Has anyone else had a similar situation?
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Iammags,
Did your MO test for B-12 and D? My B-12 was borderline deficient and I had some of these symptoms. As soon as I started on supplements my symptoms improved, didn't go away completely because I had neuropathy from Taxol. Best, MJ
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Thanks MJ, funnily enough I am very low normal for B12. I've just started supplements so we'll see what happens. Hopefully I'll have the same result that you did.
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Hi Lisa!
I was diagnosed with IDC, Stage 3a, on 7 Dec 2015, completed neo adjuvant chemo, unilateral MRM, and radiation in Jun 2016.
I'm 30yr old and plan to go for reconstruction. My treating doc says I've to plan for it after 3yrs.
What's your experience with reconstruction and which place would you suggest for it..do you feel its a right choice to go for reconstruction and what're the cons of having reconstruction..
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Thanks, dctexas~ Having a very rough time with this. My onc has ordered a full cognitive screening.
DeeRatz: My onc said that my knee pain is not associated with Tamoxifen, that it's neuropathy. A VERY scary thing happened when I was bodysurfing the other day...I could not get up and out of the water. It was really scary!!
musosgirl: NO COHOSH if you are ER+.
Blessings all.
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hi ladies!
Since my diagnosis (and post-chemo treatment), i have added supplements to my daily routine. They include calcium with magnesium, vitamin D, and more recently fish oil (omega 3), vitamins B 6 & 12, tamoxifen of course and magnesium oxide for hot flashes. I have not had any relief from hot flashes with this magnesium and after reading some of your posts wondering if i have the right one for hot flashes? I am also experiencing very painful achilles tendons, do any of you experience this?
I would love your thoughts! Thanks!
Kim
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gardengypsy-I'm pretty sure that Tamoxifen is causing joint issues for me. My knees are still giving me issues. I have never had knee issues in my life. It all started after taking Tamoxifen for 6 months. My MO told me my tinnitus wasn't caused by my chemo....coincidence that it started after my second chemo treatment. I think these drugs all affect us differently. Good luck with the surfing. My knee is very sore again this evening after wake surfing again this afternoon. Will ice it and baby it for a few days again...
Kimmer-I haven't found anything besides Accupuncture has helped to decrease my hot flashes. I was in Langley this past weekend and with the heat and humidity I was a hot mess. Now in the Kelowna area today was 34. I have to jump in the lake often to bring my body temp down. If I avoid coffee and red wine (those are the triggers for my hot flashes) I do better. But dam this glass of wine on the patio is so worth the hot flash.
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Kimmer--I take magnesium glycinate for hot flashes. I get the KAL mag glycinate 400 and take 1 tablet a day. I also take magnesium chloride (SloMag brand) for regularity. I take 2 of those a day.
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thanks for your responses
deeratz am with you and the wine... So good, chilled on the patio!!! What were you doing in langley? I live in new west!
Lala1 so has the magnesium you take helped with hot flashes?
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DeeRatz~ Yes, I agree about the joint pain. Knees especially bad, and I have never had a day of joint pain in my life. We'll see how the supplements work.I am going to have a full evaluation of my supplements and drug interactions soon. My onc says this consultation is very important!
I will let y'all know what I learn
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Musosgirl~ I am seeing a therapist who specializes in oncology. Fabulous. I found her through the hospital. Good luck with the new regime, hope something changes for you soon. Take care of you. Don't be afraid to indulge in the little things that make you feel better - reading, chocolate, taking walks, Facebook- are all therapy for me. I need MY TIME and I also need to reach out to others.
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Kimmer---I'll be honest...I don't know if the magnesium has helped or if my HF are just tapering off. For me, after my hysterectomy Jan 2015, I started getting HF about a month out. I'd get about 15+/- in a 24 hr period. My holistic doc suggested Peridin-C and my MO suggested iCool. I take both and got my HF down to about 5-6 in a 24hr period and they are much shorter and milder. I should have started one or the other, seen what results I got, then tried the other but....I got impatient.
About 3 months ago, I ran out of iCool and went about 10 days without it and my HF definitely got worse. But I added the magnesium about 6 months ago and I'm now down to about 3 or 4 HF in 24hrs. So either the magnesium has helped as well or maybe I'm just slowly moving out of menopause. Either way, I'm taking all my supplements till these damn HF are gone!!0 -
Anyone trying turmeric curcumin for joint pain?
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Sheri64--I'm a HUGE fan of turmeric for joint pain! I got on it per my holistic doc's suggestion about 3 years ago. My pain went from a 8-9 to a 1-2 on a scale of 10. It's allowed me to get in the gym. I run, lift weights, do yoga...pretty much anything I want now. I've put my dad on it for his knee. He hasn't been able to golf or hunt for the last year. He was on it for 6 weeks and went and golfed 5 days out of 1 week!! My brother takes it for shoulder pain and said it's been a life saver. Now my sister is starting it for her knee pain and the lady who runs the cancer wellfit program at my gym just ordered some for her back pain. I've been telling her for months to try it and she said 3 people just yesterday had mentioned to her how much it helped their joint pain. Now here's my only suggestion....try the Gaia Turmeric Extra Strength. It's made in NC so it's cleanly made according to my holistic doc who actually visited the plant where they produce it. And he said start with one capsule a day for a month. If it helps, continue with that dosage. If it doesn't, increase to 2 capsules a day. If that works then just stick with that dose for a while. If it doesn't work at that dose, then it's probably not going to work for you. There are other brands but make sure whichever one you take has the black pepper included in it. It's what activates the turmeric. Hope this helps.
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Thanks lala1 so it is OK to take with the Tamoxifen?
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I got the blessing from my MO. He was hesitant at first but then did some research and called me and said he was ok with it. Check with your doctor first.
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For those who've experienced weight gain, did you find it leveled off? I feel like I'm about 1.5 lbs over normal and have been taking Tamoxifen for almost six weeks. But it could be the heat and humidity too.
I am scheduling my exchange surgery for hopefully end of September/beginning of October (so sick of these TEs) and my PS says I have to stop taking it 30 days beforehand because of the risk of blood clots. Will be curious to see what my MO says next week.
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Paxton29--I gained about 4 pounds in the first few months after diagnosis which leveled off about 3 months after exchange surgery. But I also joined a gym which offered a cancer wellness class and that helped me with exercise and eating. I also had to stop Tamoxifen before all my surgeries due to risk of clots. But I had to stop almost all my supplements too like fish oil, aspirin, turmeric, ginger, etc. Be sure to tell your docs everything you take (I even had to stop my daily spoonful of ground flaxseed!) so they can tell you what is ok to take.
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Thank you, lala. I was diagnosed in November 2015 and my weight has been the same (I consider a 3 pound fluctuation normal). I've been through BMX, chemo, and radiation with a few drops during chemo but otherwise ok. I guess we will see what happens when I stop the Tamoxifen. The only other thing I was taking is Vitamin E to try to help with hot flashes and they told me to stop that. I guess I'll stop the nightly melatonin too, which is a shame because it has helped me sleep now that I can't use Benadryl
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Paxton--Just for your info....my MO was very quick to tell me not to supplement with extra Vitamin E. He said what was in my multivitamin was ok but he'd rather I find one that has the lowest amount of E. He said there's some evidence that Vit E is estrogenic so it isn't recommended for ER+ BC patients. And I was taking melatonin at the time of my exchange surgery. My doc let me stay on that. Maybe because it was a really low dose (0.3mg). As to hot flashes, maybe try some magnesium glycinate (I take the KAL brand). It's helped some women.
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I'm now having the joint pain as well. Already on mag glycinate, mag citrate, turmeric w/black pepper etc. Going to discuss with MO next week. I still have a lot of nerve pain so staying on the gabapentin which helps with the HFs too, but something has to give. I won't stop the Tamoxifen but need some relief.
Scottie
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My MO was the one who suggested it. I just did some quick Googling and I don't see anything about that. WebMD says it's possibly ineffective for hot flashes but I don't see anything saying it's unsafe for ER+ breast cancer. I'd be curious to see any research.
EDIT. I found an NIH article from 2008 or soand asked my scientist husband to read it. He said it meant Vitamin E reduces growth of estrogen positive breast cancers but also reduces the gains from Tamoxifen. Whether true or not, I don't know, but i might as well just give it up since I'm not even sure it helps. Thanks for mentioning it!
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Scottiemom---The only other thing I can suggest is Vitamin D. My holistic doc said if your levels are low, it can lead to joint pain in some people. I was found to have low levels at the time of diagnosis (which my BS swears leads to cancer) and this was despite having a job that has me outside most of the day on most days! My holistic doc said it's because we use so much sunscreen. Both of these doctors ask me every time I see them if I'm taking Vitamin D and to make sure it's at least 4000-5000IU. So one doc swears it helps prevent cancer and the other swears it helps with arthritis! Who knows? All I know is it's cheap and easy to take so I do. And one other thing that helps me is lots of walking. If I skip a couple of days, my joint pain flares up at night. Good luck!
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Scottie ~ You and I are having the same issues; I am taking Gabapentin (500 mg/day) and that is helping with the nerve pain.
I am going to give Turmeric 1 month.
I wake up in the middle of the night with leg pain. I am 5 months out from Taxol, yet it seems to be getting worse!
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Hi All -
I'm so glad I came to this board. I started Tamoxifen in May. I did not have any hot flashes for about two months. Now I'm getting them more frequently, but not on a regular basis. (it's funny when I think I about having a hot flash, I wind up having one, so I'm happy to report that I'm beginning to sweat a bit while I write this post.)
Does anyone have eye issues? I'm having something weird happening with my peripheral vision.
I'll try out the magnesium glycinate and turmeric. Did you speak to your MO before starting these?
Did anyone have an IUD they had removed while on Tamoxifen?
Thanks!
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Zelda---I run everything by my MO first. I mean everything! It's shocking the things he won't let me take so I take no chances.
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Anyone have joint pain in the fingers on both hands?Middle, ring and pinky knuckles are stiff and sore when I wake up, goes away during the day, but then starts all over again. I've been on Tamoxifen since January and completed chemo treatments two weeks ago. I take 3mg Melatonin at night, sometimes. It started last month, but wasn't too bad. What is going on and how can I make it stop?.
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I am into week two and so far so good (as expected!). I do have a question for all you wise ladies. So before I started tamoxifen, I was adamant I should see a gynecologist first thing; get all set up with one and he could see me before starting the medicine. I even called into the office and they recommended I come in two weeks after I start tamoxifen. I have an appt next week. Now I haven't had any trouble in that dept so now I am questioning whether I should go in or now. I am feeling like this is a big waste of time, let alone having yet another doctor appt. SO, what do you think? Worth it or not? I have not seen an OBGYN since I had babies 20+years ago, just my family dr. Your thoughts are greatly appreciated
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Carlsoda~ I think it's a great idea, especially because you haven't been to a gyn in a long time. In case you ever do need him/her, you will have established a connection with someone you, hopefully, will trust.
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Carlsoda - I agree you should keep the appointment. My MO made clear that it is essential to have yearly checkups by a gynecologist because of the increased incidence of uterine cancer in those taking tamoxifen (it is still a relatively rare occurrence, but we certainly don't want to take any chances!). Having an initial exam upon starting tamoxifen is very helpful to be able to evaluate if there are any changes in the future. I am also working in the field of cancer screening and diagnosis (currently in gynecological area) and have an increased appreciation for the value of these easy screening and preventative measures.
All the best!
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