All Aboard the "T" train! Starting Tamoxifen After Spring Rads

Lovinggrouches

I'm late joining the "t" train!!

Mags, thanks for startingthis thread!

Just started tamoxifen yesterday and had horrible night!! Of course, I have had many of those since I am 5 weeks tomorrow from having total hysterectomy. I wouldn't know if I had side effects since I'm having pain in places I never hurt before and hot flashes from HELL with this medically induced menopause. My company is Mylan that makes my pills. I started taking melatonin 10 mg slow release and plan to start turmeric tomorrow. MO told me no aspirin. Haven't looked up to see if aspirin is tamoxifen inhibitor or not. There are so many meds that inhibit this med. My MO said something about giving me effexor at 5 week follow up. He said he likes to see his patients a month after starting. I will be on it for 10 years despite having ovaries out. I'm also taking calcium and vitamin d. I started out taking tamoxifen at night because i read that effexor is best taken in am and don'twant to take them together since i read effexor is weak inhibitor of tamoxifen. I don't know. Maybe I should take it in am? The hot flashes and headaches are SO bad that I will take the effexor because I may be desperate by then!! I already tried clonidine and it only helped one night!

Lisey

I start this Friday... Wow Loving, I couldn't imagine having a full hysterectomy then hving to deal with SEs from Tamox right after.. that would be so hard. You are right about Effexor being a tamoxifen inhibitor 2d6 line. Turmeric is something I'm on, but now I'm reading that curcumin is a mild Tamoxifen inhibitor on the CYB2d9 enzyme - which Tamox only uses a fraction of as a pathway, so it's not as big of an issue. I think the fact you are getting hot flashes means it's working, so perhaps balancing it out is a good thing?

I was planning taking this full regime of herbals along with my Tamoxifen... but now I'm having to go back and reconsider. CBD Oil is now out of the question as is Goji berries (which is a bummer because it's in a lot of shakes I like like Zurvita)... Grapefruit is a no go... I've read that Melatonin actually HELPS tamoxifen so I'll still take that... There's some other things bump up Tamoxifen as well..

Lovinggrouches

Lisey, I'm definitely taking the melatonin, but the 10 mg seems too much for me. May go down to 5 mg. Hate i canton grapefruit, I have my own tree lol!! There are over 300 meds that inhibit tamoxifen, of course many are different combos of meds that are mixed with benadryl. I hate to give up my benadryl, but I will. it's great for those sleepless night. Well just have to all be careful what we take 😊

Paxton29

I hated to give up Benadryl too, but so far 3 mg of melatonin seems to work ok. Of course the hot flashes wake me up, but only two last night and they weren't too bad.

Lisey

Do any of you guys have a full list of medicines and herbals that are inhibitors? I've been trying to do it manually by plugging what I eat and ingest into wiki and finding the pathways.. probably not as efficient if there's a list somewhere... anyone?

Lovinggrouches

I just googled medications that interact with tamoxifen and there was a site that gave full list of over 300 med combinations and if they were low, intermediate, or high metabolism inhibitors.

Lovinggrouches

I found it! It is www.drugs.com/drug-interactions/tamoxifen

Lisey

Thank you for Posting the list Grouch...

- After reviewing the list.. I'm taking issue with quite a few things. This list is not taking the primary pathways into consideration. For example. Codeine...

Both Codeine and Tamoxifen use the same primary Enzyme pathway to be absorbed in the body (CYP2D6).. You can discover which medication uses this pathway here: http://www.pharmacytimes.com/publications/issue/2008/2008-07/2008-07-8624

The problem is if you have competing medicines trying to use the same pathway there's only so much Enzyme to go around and they compete. This is NOT good when you want to make sure there's a clear path for Tamoxifen to have to be absorbed...

I wouldn't trust this list at all... because you want to make sure you are keeping CYP2D6 clear for the Tamox only...

Lovinggrouches

It worries me that effexor is in that group, yet studies have shown it has a low effect and is one of the few meds the oncologists will give to help with the depression and severe hot flashes. I'm going to start turmeric and icool to see if it helps. I'm not sleeping because they are so bad. I can't take benadryl that I take when I'm desperate for sleep anymore with the tamoxifen. I have some restoril that MO gave me, but doesn't work. Melatonin isn't working, I think 10 mg dose is too much. May buy the 3 mg. Glad I got off the hydrocodone I was taking at night for the pain from the surgery because you can't take that EITHER. Boy, we sure have to watch what we take! I think I can deal with the hot flashes during the day but I HAVE to be able to sleep when I go back to work lol!! As a fellow breast cancer sister said at support group meeting tonight, breast cancer is the gift that keeps on giving!!!!! 😊

tbalding

LG, what time of day do you take T? I was talking to another BC sister yesterday & she told me if I had trouble with night sweats to try changing time I took it. I'm starting Saturday morning.

Lisey

Totally agree.. and if I can be honest, if you are having severe symptoms, I wouldn't worry too much about conflicts because clearly your are metabolizing the Tamoxifen. I'm personally more worried about having no symptoms or very few. If I do have a ton of symptoms, then I'm much less concerned about Tamox getting into my system and will probably start up the CBD oil again.

Lovinggrouches

Lisey, I'm having severe hot flashes from the hysterectomy I had 5 weeks ago. That's the problem. I'm not going to know how well I'm doing on tamoxifen because of that. I may eventually order test and pay for it out of my pocket just for peace of mind!

Lisey

ah... gotcha, well if you do order the genetics testing, I highly suggest you use Kailos... Right Solfeo?

tbalding

I officially joined the T train this morning. We'll see what kind of a ride I have.

Hope you all have good weekend!

Teacher47

I started taking Tamoxifen last Tuesday. So far I am experiencing mild nausea along the lines of morning sickness pretty much throughout the day, particularly if I might need food. Am beginning to see why weight gain might occur as a full tummy does keep the nausea at bay

Lovinggrouches

I'm continuing to have nausea too. Started about a week ago. I AM losing weight , which is good. Once I can force myself to eat I feel a little better. I think I am hungry and start to eat something, and then can't finish it. Hopefully the nausea will go away. Gynecologist thought the tamoxifen may HELP the hot flashes since the total hysterectomy, but I haven't noticed a difference. I'm literally hot flashing every hour to hour and a half with severe insomnia and awake multiple times a night. Tried melatonin a few days and didn't seem to help. I may try it again just to be sure. The icool and turmeric I have been taking at night hasn't helped yet. The only plus side is that I'm not having as many debilitating headaches. Hugs to all!!!

iammags

Hi all, I haven't been here for awhile. I started Tamoxifen on June 1st and as of July 6, I'm taking a couple of weeks off. I had some SE's ( joint pain, fatigue, numbness in fingers and toes) and I want to make sure that it's the T and not the radiation. It was my MO's idea. I'm not sure if I feel back to "normal" or not. And since I'm pre menopausal my Mo said the alternative would be ovary suppression (shots in my butt every month or so. Ouch).

I'm now investigating the idea of stopping all together, That seems a bit harsh so I'll see.

Hi LG! Nice to see you are doing ok.

#CancerTheGiftThatKeepsOnGiving

Lisey

Just reporting in... I'm still waiting on my Kailos DNA report... but I've been taking Tamoxifen for 5 days. My knee hurts as I'm sitting here at my desk.. I normally don't have any knee pain.. ever. So I'm wondering if this is a side effect? Also, anyone know what they take for joint pain? my ankles cracked today too..which is weird.

Paxton29

My only side effects are the hot flashes, but they are plentiful. I consider myself lucky if they only wake me up twice.

Lovinggrouches

lisey, seems as though I saw something on bottle of tamoxifen thread about a supplement that helps a lot with joint pain. I don't remember what it was. Maybe one of the magnesiums? Hope I don't start with that too. The nausea and hot flashes are enough, but I'm determined to stick with it. I'm too afraid of recurrence and I didn't start the tamoxifen until 7 1/2 months after diagnosis, so that worries me a lot considering all the stage one people like me I have seen on these boards that had my same treatments, no mastectomy with low oncotype and no chemo that have been diagnosed with mets. My nerves have been shot lately waiting until December for next mammogram!'

tbalding

I've been taking tamox for 4 days and so far no new se. Tiredness & trouble sleeping I experienced during rads. Keeping my fingers crossed. Taking melatonin & biotin plus my multivitamin.

Lovinggrouches

tbalding, think I will add biotin too!

PlanB58

Hi All! I'm officially on the train. Started tonight after much staring at the darned thing! Hope it will do its job!

Sorry about the nausea! I had that a lot during rads its not fun.

Iammags keep us posted on how you are feeling. Difficult choices to make

Lovinggrouches

Mags, let us know how you are. I had my ovaries out. Not just because of the cancer. I was having female problems too, and was thinking of family history and what tamoxifen for 10 years could do. It's a hard thing to think about. The medicine is to help us, but some people have such bad side effects. We also have to think of quality of life. Hugs!!!!

tbalding

PlanB, welcome aboard took me a while to take it too. I just stared at it too. Finally just popped it. Hope you have minimal se.

Mags, keep us posted on how your doing.

EmilyJane7505

Just boarded the T train yesterday! AC&T Chemo already put me into menopause so I'm already dealing with hot flashes and some other menopause type symptoms also associated with Tamoxifen. Was pretty emotional last night in starting Tamoxifen - my guess it that it's that one last hurdle, specifically where I need to take something with frightening side effects and understand it's best to proceed in spite of that risk/fear. Talked myself down that I was very fortunate that I had Tamoxifen as an option.

Wholenewworld

Hi All,

I started July 12th - after staring at the pill forever just like PlanB58 said!

So far, only fatigue, but feels like when I did rads. Sometimes I just have to crash but I try to power through it most days. I hope this doesn't last for long! I alsoget hot for a few minutes but then it's ok. I've been walking 30 minutes a day too because the thought of clots scares me the most.

grainne

hi. I was on AIs for 10 weeks and just couldn't stick them....unbearable night sweats, really painful, stiff knees and depression. It's hard to explain but i really did feel like an old woman. I came off for a month, felt normal again, and started tamoxifen on 1st july. So far, so good. A nightsweat maybe once a night but, as of yet, nothing else. Like you, i walk, as fast as i can, for half an hour every day. I hadn't thought about clots. I do take a low dose aspirin. I don't see why anyone should be afraid to start: if the side effects are too much, we can just stop. I agree with emilyjane75: I'm just so glad it is an option. Bc is a nightmare but thank god to have it now rather than 10 or even 5 years ago ( if i sound a bit jolly and gungho it's because I'm just back from a speedwalk and I'm pumped!! )

Paxton29

Yeah, I've always figured the side effects probably won't be worse than the cancer. I've done chemo and rads, Tamoxifen seems easy. I hate the hot flashes but if they get unbearable I'll get the Effexor scrip I guess

cwayman650

Well, I climbed aboard the T train today. It's a little nerve wracking but the ai's side effects weren't tolerable. I guess I'll just see how it goes.