Bottle 'o Tamoxifen

dtad

superius....wow! I have not heard of all those docs being on one team. Lucky you! Can I ask where you are being treated?

ksusan

Peachy2, do a search for magnesium for many discussions about reducing cramping.

KateB79

New tamoxifen manufacturer = new side effects.

My night sweats are getting way better, but now I feel bloated. Which is worse? I think I'll take bloating over not sleeping. . . .

Fun, fun, fun, fun times!

momwriter

Peachy 2- I take magnesium and fish oil. Both seems to help. If I skip them for a few days I pay for it with leg cramps.

Peachy2

Thanks for the magnesium help, ladies! :

superius

dtad, they are the "Non-Official" Team -- they are all memebers from my church music ministry!

& of course, I have the official Dr such as MO, primary care Dr & a surgeon.

NormaJean65

Jen987 Thank you for responding to my post about the hair loss. I am going to go to my PCP & ask for a full thyroid panel to be run on me. There are days when I feel like cutting the hair really SHORT but then my bald spots would really show. I am like an old man with a "comb over" and so distressing. Have a great weekend and thanks again.

new2bc

I take biotin for hair loss. I also noticed that the months I was not eating meat, the hair loss was worse, so I eat chicken every day.

molliefish

I'm just about to finish up my first 3 months of Tam. I have my follow up on 28 april but I will renew the script before that. I have little to no side effects, but I do have this gas/flatulence that is disturbing.. I mean I try to blame it on the dog but.....

Just kidding... the dog really does have an issue, and I do have gas and I manage to control it... it is a bit worrisome.

otherwise I've tried to get back into a work out routine. I have a number of obstacles in my way and I am still trying. I'll get there... but oy vay some day's I'm really po'd about it...

hopefully I keep the same manufacturer of the Tam...

lala1

Here's an interesting note....I saw a podiatrist the other day for plantar fasciitis as well as a small soft nodule on my heel that is sometimes painful. She gave me all the usual suggestions...i.e. tennis ball, frozen water bottle, inserts and then mentioned how good my feet looked considering I was on Tamoxifen. I was surprised by this comment and asked why. She said she's had alot of patients on Tamoxifen who have pain in their feet and quite a few who have an increased problem with ingrown toenails and a few who have the skin on their feet slough off!! What?! She said it's just the top layer, like it gets very dry and scaly and peels off almost like a sunburn. She seemed to think it pretty common on Tamoxifen. Anyone heard of this? I just find it really interesting all the SEs that my doctor never mentioned.

Trvler

So I spoke with my doctor about the light thing and he says it's nonsense, essentially. He says Tamoxifen has been around for 40 years and he would know about it it this was an issue. He is in his early 70s so he has some history. He said no reputable journal has published anything about it.

Tessio

Hi ladies,

I've started Tamoxifen 2 weeks ago. Yippee! I am also five weeks post 30 radiation treatments. My energy level has been cruddy the past 2 weeks. The last 2 days I've noticed increased shortness of breath, stairs are a nightmare right now. Of course it had to happen after my follow up appointment. My hemoglobin was low on Tuesday due to a heavy period. TMI !!

I will call my doctor today, but wanted to check in with my warriors too. Anyone else get shortness of breath post radiation/beginning of tamoxifen? Thank you!!

labelle

And my RO when asked to give me a referral to lymphadema prevention/awareness class, as needed to be covered by my insurance, refused and called it quackery. My BS gave me the referral.

There seems to be quite a bit of evidence that sleeping with the lights on might interfere with Tamoxifen. Why take the chance? Since I'm taking this wretched drug and getting some crappy side effects, I want to make sure I'm getting all of its possible benefits as well. Sleeping in a dark room/with a sleep mask definitely isn't going to hurt me, doesn't cost a bundle and is easy to do, so I'm there.

ORgal

Wow, so much info on here. I kinda agree with labelle about the light, even if it doesn't help the tamoxifen, blocking the light does seem to be helping me get better sleep, and anything I can do to help that is a plus! And that is surprising about your RO, my RO was the only doctor concerned about lymphedema for me, she sent me to a physical therapist that specializes in lymphedema, just in case, and it was finally my physical therapist that noticed it - mine isn't in my arm but my breast/trunk area and is pretty mild. Three days after getting things to do from my physical therapist and it was much better.

Crazy I've never heard of the foot thing lala. I've been on tamoxifen since July of last year and haven't noticed anything different.

Something new I came up with. I've been reading labels on all of my food and looked at my supplements. My Vitamin D has soybean oil in it! I've been trying to avoid soy and never thought to look at my supplement ingredients for it. Now I will look for a different brand.

Trvler

I will definitely sleep with my mask on. I think his point was just don't obsess over it, which I was doing.

ksusan

I haven't heard of those foot problems. Joint pain, yes.

labelle

Well, my RO was a dick and I'm so glad I will never see him again-if I ever needed RADS again, I would not be going to him! But my point was, our doctors don't always keep up with things. My RO said there is no way to prevent lymphodema, so no point going to any classes seeking information about how to prevent it. I'm sure he thinks he keeps up with all the latest info too and if there were anything to prevent lymphadema, he'd know about it. Not so!

But Trvler, it probably isn't good to obsess about every little thing we do or don't do-how dark is dark enough? how much exercise is enough? how many grams of sugar did I eat today and in what form?-doing this can be very stressful and stress isn't good for us either. Bah!-insert emoticon of me pulling out my hair!

The important thing, I guess, is that we keep taking the damned pill!

BBwithBC45

Lala,.my husband is a podiatrist and he never mentioned anything in connection with Tamoxifen. OK, I didn't explicitly ask him, but I'm pretty sure he would have said something.

lala1

Thanks BBwithBC45....I've never heard of that either! This was a young doctor and I'm still trying to decide how much I think she really knew. I hate going to a doctor and coming out with a mimeographed piece of paper telling me stuff I could find in 2 seconds with Google. Makes me feel like cattle!! Luckily all of my BC docs are very good at researching and explaining things with me. This particular one reminded me of the ENT I saw last month that gave me the xeroxed piece of paper that said use a saline rinse, Claratin and Flonase. Uh duh! Been doing this for the last 2 years! Said so in my file you have in your hand! Moving on.....

Trvler

That RO sounds awful!

Having Stage 2 on the 21st so I am off Tamoxifen for 3 weeks. Not sure how I feel about that.

superius

My MO said Soy is ok in moderation, tofu, edamame, etc. You probably don't eat them everyday in large amount, BUT NOT in concentrated form like soy protein powder stuff.

Blownaway

I think my sleep mask helps me sleep because hubby has night lights all over the house (looks like Vegas in here) and also the mask helps to keep my eyes from dryi g out from all my hot flash fans.

I noticed a nodule forming on my instep (arch) that is slowly growing but so far it doesn't hurt so I'm waiting to see what it does before spending another $50 specialist copay. Never considered that it might be Tamo related.

Ditto on the shortness of breath which had been bad enough to warrant a chest xray, stress test, echo, EKG....But myPCP has since increased my thyroid med twice and each time I noticed an improvement. Hoping to get another bump up with my latest labs which I think may alleviate the SOB altogether.

ayr1016

The discussion on sleep masks has motivated me to get one. I sleep with a fan on (for the white noise), but have a corneal disease that already dries my eyes out. Now with Tamoxifen drying me out, it is worse. I have been hesitant on getting one because I did not think I would be able to go to sleep with something on my face. But, it is better than taping my eye lids shut (which the eye dr. wanted me to do). Anyone have a favorite (sleep mask) they recommend?

momwriter

Lala,

I have pain in one foot- in the metatarsal area (are on top of the foot below the toes). I used to be a runner. Lately I've thought maybe I'll just start running and see if it even affects the pain. If it doesn't get worse, I'll just deal with the pain. I really want to run again.

Also, I do have terribly dry feet- the only thing that has helped is getting a pedicure and they rub it all off and they look normal for a while. (hate having the bits left over on my yoga mat!).

Generally I am tolerating tamoxifen well but because of the dry skin/some eczema on my legs issue and my sloooow digestion ( and I suppose the foot) I am going to see a naturopath on Monday and see if she has any insight into dealing with these issues. I am wondering should I follow an anti-inflammatory diet or an alkaline but I just refuse to give up caffeine- plus there are the Swedish studies which say 2 cups a day benefited women taking tamoxifen. It's all so confusing!

Blownaway

My sleep mask is satin on one side and kind of fuzzy plush fabric on the other. I had to cut about 2 inches off the strap and re sew it back together to make it tight enough to stay on all night. Got it at Walmart (I think).

Scottiemom11

notdone. . .no matter what each of us has gone through we all have rough patches. Hugs to you. I'm on Gabapentin for continued nerve pain from my surgeries and it helps with the HFs from Tamox. I was miserable when I was also on monthly lupron shots last year. I had to stop those b/c I couldn't sleep and started having severe gastro trouble. Ask your MO about something to help you sleep at night. I have a fantastic MO. I take 5mg of melatonin on week nights when getting up early for work.

Turmeric daily helps with the HFs although I still need to clear it with MO next month. Mag Citrate helps with the muscle aches as does my regular walking, hiking and dreadmill workouts.

Scottie

Trvler

I haven't had great luck finding good sleep masks. I use the ones you get from the airlines from when my husband travels overseas but he rarely goes anymore and I am on the last one. For me, it HAS to be black.

For dry feet, try rubbing Aquaphor on them and putting socks on until they dry out. I have that problem with my heels a lot. I also was going without shoes around the house and I started wearing indoor shoes because going barefoot is hard on your heels.

jojo9999

As for masks, I found a contoured one like this is best - it doesn't touch my eye lids, so when my eyes are closed I don't realize it is on.

http://www.amazon.com/Bedtime-Bliss%C2%AE-Contoured-Comfortable-Moldex%C2%AE/dp/B00FJQFJX8/ref=sr_1_5_a_it?ie=UTF8&qid=1460160313&sr=8-5&keywords=sleep+mask

Noni

I am so grateful for this thread. There is a treasure of information and I want to thank everyone for sharing.

I started tamoxifen a week ago after chemo stopped working. I really, really, really need this pill to do the trick. I've got a 3 cm mass in my lung that everyone suspects may be LC as it looks so much different than the BC masses. If the tamoxifen does not shrink it, I'm looking at a lung biopsy which I am dreading.

Thanks to all who share their experiences and knowledge.

LynnBM

Noni, I'm with you! I am done with radiation next Tuesday! I get my last boost and I start tamoxifen right after. I haven't picked up the prescription yet because I'm dreading the thought of taking it but I know that it's necessary! I'm grateful too that everyone has shared their stories!!!