About-to-Start-Hormones Group

KAK

Hope, tamoxifen & other hormonal therapies are in fact often used as the first line of defense, even before surgery sometimes, to shrink tumors that are ER+.  Tamoxifen & AI's are very effective at this, as well as at their more well-known job of preventing new or recurring cancers.  I guess we shouldn't be surprised because they work the same way in both instances, by depriving breast cancer cells & tumors of the estrogen they feed on, causing them to shrink & even disappear & not allowing them to get a foothold in the first place.  Kinda like, if you don't water the grass, it'll die.

Makratz

Yawyaw,

I sure hope your insurance company pays for your Oncotype test. Isn't it crazy what they make us go through???

I have been on Tamox for 5-6 weeks now.  I am 42 and very active ith 2 young boys.  The Tamox is making me have night sweats every night.  I used to have them 2-3 nights before I would get my period, now it is every night, almost hourly.  I am hoping that the longer I stay on the Tamox, this side effect will go away.  Due to the night sweats, I don't sleep very well.  I also have gained weight, about 7 pounds.  I am a relatively small person anyway so when I tell people how depressed the additional weight makes me, they laugh.  I don't find it funny.  I am also tired during the day, which could be the Tamox or the fact that I don't sleep at night.   All my se's seems OK to me for now, I just don't want a recurrence.  I hope when you start your tamox (or whatever one you decide to), your se's are minimal. 

We had a very similiar dx, and I like to compare what doctors tell each of us to do.  Good luck with your decisions.  I'll be thinking of you.

yawyaw

Thanks Makraz,

 I just turned 45 and only have a teenager left at home. I really enjoy sleeping at night The night sweats scare me, but I guess if you've gone through a cancer dx, it's not that big of a deal (I hope). I understand that the tamox will shut down your ovaries eventually, do you know how long (approx) that takes?  So, when my friends talk about how they couldn't survive menopause without their estrogen....we can take nothing, right?? Eeekkkk!!

Yaw 

NancyD

yawyaw, I survived natural menopause very well without any HRT. But I will say that it varies in every woman just as PMS varies. I had no PMS until about five years before menopause. Well, maybe it was partly my divorce that caused some of the strange reactions, but it seemed to come on before my periods so I counted it as PMS.

Natural menopause for me was several years of hot flashes. Not really that bad...annoying more than anything else, but once you get a handle on how to get through one, they're easy to take. I kept a small cardboard fan nearby and just fanned myself through the bad ones. The night sweats are just a form of hot flash. Unfortunately, they do disturb your sleep, so that's another side effect I felt, but I always kept a chill pillow nearby and that helped.

All in all, I'd say I got through it pretty lightly. I was just settling down, fewer and fewer hot flashes, when BC came along. Now I'm on an AI that's bringing on the hot flashes again several times a day. Seems like old times . But knowing that the AI is doing more to prevent a recurrence of BC than anything else, I definitely can live with all the SE's.

elisabeth

Hi Hope.  Yes, I did 6 and 1/2 weeks of rads.  I have now been on Arimidex for about 2 months.  There are some very interesting and informative posts on the "anyone take Aromasin" group on this site.  See what you think and pleae keep me posted.

E 

nancy258

Hope, since your nodes are negative they are not giving you chemo.  If you had stayed with the lumpectomy, they would have recommended radiation, but since you had bi-laterial masctectomy they usually let you skip the radiation unless you had something close to the skin or the chest wall.

HopeForBest

Thanks Nancy, E and KAK for your responses. I hope things will be OK for all of us. I am getting kind of addicted reading this posts. So many good ladies around.

Best regards to All.

Hope

nancy258

Hope, since your nodes are negative they are not giving you chemo.  If you had stayed with the lumpectomy, they would have recommended radiation, but since you had bi-laterial masctectomy they usually let you skip the radiation unless you had something close to the skin or the chest wall.

HopeForBest

Ladies,

I got the first pack of Tamoxifen. Actally they only had Tamoxifin Farmos 20 mg. I believe it is the same. does anybody know if there is a difference?

I just took my first tablet. Will share with you how it behaves.

Regards,

Hope

KAK

Here's some cheering news for us!!  From another thread called "Tamoxifen A Plus"

     "Hello All, I,d like to take a few minutes to tell of the POSITIVE effect of Tamoxifen, I was on tamoxifen for 5 yrs, I had some side effects like hot flashes, some vagina dryness,weight gain, BUT I also have had no recurrence and am 15 yrs CANCER FREE this December 17th, so I just wanted to tell of the Positive. Thanks msphil"

bee5467

Yep, Kathi --

Thanks for sharing that.   

KAK

Bump.

Makratz

Hi Kathi,

Thanks for bumping us!  How's everyone doing out there.  I'm guessing very well since it's so quiet.  I have noticed in the past week that my night sweats/hot flashes are slowing down!!  I was having them at least every hour all night long so I wasn't sleeping.  Now I may have 1-2  night! Yeah!!  How's everyone else?

Linda

Skye64

hi all, I am still taking 10 mg of the Tamox. I am doing not so good. I good some edemas in my legs and in my face and fingers every morning. Still have hot flushes, joint and muscle pain. And also the heardbeating. I have an appointment tomorrow with my doc. We will see.....

shari1232

Just started my second period after starting Tamox.  Any PMS stuff I had before started Tamox is exaggerated now -- night sweats, anxious feelings the week before, bad skin, bloating.  I can only hope that the bleeding this month will be less than last month -- it was outta control last month!

pclarky

Well, my news is less than good.  After two bouts of hives, my onc has told me to stop taking tamoxifen for 2 weeks.  I am not sure what will happen then.  The bouts were s-l-o-w-l-y relieved with generic zyrtec.  But, don't really want to take THAT for 5 years, too.  Sounds crazy, but I am envying those who 'only' are dealing with hot flashes!  Can't believe I'm actually pining for tamoxifen!  BLEAH!

nancy258

I hate to jinx it by saying this, but I feel better than I've felt in a long time!  I'd say terrific!  Only been taking the tamoxifen 11 days, but so far no problems.  Sleeping good, thinking clear, energetic.  Hope it stays this way.  I'm not due for my period until right after Christmas as I timed the start of the tamox with the start of my last cycle.  I'm a little worried about how this will affect my PMS also.  I really don't want that exaggerated!

I'm sorry some are having problems.  Hopefully they will subside with time or at least slow down like Makraz.  pclarky, I've read several people who stopped for a couple weeks and started back up and their SEs did not return.  I'll keep my fingers crossed for you.

Skye64

Hi, am back from my doc. I told him all my SE. Hmm....his answer was the Gen test. So at first I will fly next week to Hawaii for vacation. I really need that. I have to take Baby Aspirin, he told me, cause of the long flight.

After the vacation I will do the blood test and after that result I have to decide, if I will get Lupron and Arimidex or the ovaries removed and an AL.

This whole cancer thing really sucks. I asked my husband, what he would do: He just answered: "I would not take anything,  if the QOL is so bad".

KAK

Hey, all.  I've got to say I've been doing well, too.  But I've gotten to be a dab hand at menopausal symptoms these past 4 years, & I think the Effexor is really helping me now, so I've very few hot flashes & NO night sweats in the last few weeks.  No aches either, but then I'd probably attribute any I had to the usual arthritis.  In any case, when I stretch, I feel better.  Everyone's different, tho'. 

P, does your doc think you were having an allergic reaction to tamoxifen??  It's what hives would signal.  Or are you allergic to something else?  What a bummer.  Try Benadryl next time.  Works better than Zyrtec for that kind of thing.  Or get an epi pen maybe.  Jeesh.

fairy49

does anyone know if you are able to take something to calm nerves when you start Tamoxifen? such as valium or Xanax?  I have suffered for years from anxiety so a decision to take Tamoxifen is making me crazy, I was hoping I could maybe take 1/2 a valium or xanax just to even start the stuff!

Thanks,

Lorraine

KAK

Lorraine, beautiful photo!   It's common to get Effexor for side effects, but it's also an antidepressant so it would decrease anxiety & depression.  Best thing is to ask your doctor.  If you're at the point of starting hormone therapy, then you've just been through a pretty anxiety-provoking experience having breast cancer in the first place.  We all feel a little nuts by now.  So, maybe the best thing is to try some Effexor.  That way you'll get your anxiety, hot flashes & other hormone side effects addressed!  Good luck & welcome.

Skye64

hi fairy49,

at the beginning of taking Tamoxifen the doctor gave me low dose Xanax. It worked. But I took it only 3 days, cause I did not want so much drugs. I want to have a clear mind.....

Did you try some sports. That is helping me a lot with my depressions.....

fairy49

Thanks so much Skye and Kathi for your input I appreciate it! and the compliment on the photo, I took it from my website, www.weddingfairy.net I am a wedding planner! I haven't started yet, still waiting for the results of the oncotype DX test and my next appt with the onc isn't until Jan 15th, I am still recovering from the bi-lat on Oct 29th, as I had to go back in last Tuesday to have the right one redone due to the skin not surviving very well and the tissue expander had slipped! So had the drain back in and now just trying to sort through the rest of the treatment options. Before my surgery I ran 5 times a week 3-4 miles, lifted weights etc, so I am anxious to get back to that as soon as I can, I know it will greatly help me mentally.  As you all have so much knowledge with this, I have another question if lymph nodes and sentinal node is clear does is that a pretty good indicator that the cancer hasn't spread anywhere else.  I am having baseline chest, abdomen, pelvis and bone CT scans with contrast on Jan 7th and I am terrified even thought the nodes were all clear and I was thrilled, now I am freaking out AGAIN!

 Lorraine ox

Makratz

Hi Lorraine,

Welcome!    Hopefully you don't have to wait until 1-15 to find the results of your Oncotype DX test.  It is my understanding that if the nodes are clear that its a pretty good sign the cancer hasn't spread.  I'm curious to hear from others as well on this.  My oncotype was a 15 and I had clean nodes and clear margin on my lumpectomy, so I am hoping for the best.  Good luck to you, hope you feel better and keep us posted.

Linda

shari1232

I had good margins on lumpectomy, and my nodes were clear, but there were some signs of lymphovascular invasion.  My OncoTypeDX was 18.  PET/CT was clear as was MRI with contrast. I opted out of chemo and got in a clinical trial for MammoSite radiation when they wouldn't offer it to me (I was a few years too young), and "randomized" into the MammoSite side -- a surgery to implant the balloon and 5 days of tx then non-surgical removal of balloon.  Adjusting to the hormonal changes from tamoxifen have been tough.

Joyce-PA

I have been on tamoxifen for 11 months.  Just had my blood work done and it seems that my Glom Filt Rate is a little low.  It has to do with your kidneys.  Does anyone know if you kidneys could be affected by tamoxifen?  Also, just went for breast MRI Tuesday.....waiting for results...hopefully everything is okay.

NancyD

Lorraine and Linda,

Clear nodes are the best indicator that the cancer hasn't spread that they currently have (other than the scans which only show cancer when the number of cells have already multiplied greatly). But it's not failproof. Vascular invasion, meaning the cancer has invaded the nearby blood vessels, can also give the cancer an access point to other parts of your body.

Makratz

Thanks for the info NancyD.

Shari1232, what were the signs of lmphovascular invasion?

On another note, my night sweats from the Tamox have seemed to diminished!  Thank God since I was having them ALL night long and they were keeping me up!  Now I have 1 or 2 and that's it!

Springtime

Do they find out about Vascular invasion when they do the pathology? That is not the same as being in the "lymph channel", right?

shari1232

I just know that the "invasion" was indicated on the pathology report.  My oncologist made the analogy that cancer cells can be on shore, on the dock, getting on a boat, or going down the stream.... some of the cells in my tumor were off the dock and into the boat.  Because there was no indication of node involvement and other tests were negative, it is quite possible that the cancer cells that were "in boats" were all taken with the tumor during lumpectomy.