Spring 2018 Starting Hormone Blockers

Veeder14 · October 2018

Hi JosieO,

Thanks for your post. I've been going to a local gym in town that's affiliated with a medical center. I'm not a member but having been paying to go whenever I couldn't ride outside or hike outside. I started back there after my accident walking on the treadmill and using the recumbent bicycle. Exercise is good and definitely helped get through the boredom of staying home. The trauma surgeon thought it was a good idea. I also have a stationary bike at home that I switched to as my shoulder pain lessened. My back doesn't like the position of that recumbent bicycle.

I'll just have to see how things go. I'd sure like to ride outside instead of using the gym. The medical center has a Cancer Wellness Program and my MO just wrote a doctor's order so I can participate. It's free and comes with 90 days free in the gym. It's coordinated by OT and they have you meet with all the different specialists, trainer, dietician, PT, and other specialists to help patients develop an exercise program. I'll be starting that in November. Thanks for your support!

JosieO · October 2018

Veeder,

(Wide awake despite the late hour, so answering your post.)

I’m VERY glad to better understand your exercise options. I was worried that you might not have the resources that you need, but I see that you self-identified the need for exercise and made the arrangements.

But EVEN BETTER that your MO has authorized you for your medical cenrer’s Cancer Wellness Program. That sounds like a very comprehensive program with lots of resources and support. I think you will get a lot of value from that. I will be cheering you on and loook forward to hearing what you choose to share about it. (Don’t have similar in my hospital system so I recognize the benefit for you)

I also liked that your MO is acting on your behalf in that way; that’s a sign of an intelligent, caring doctor. No doubt you’ll make some very good medical contacts there. But having a great MO is awesome.

Agree fully that getting outside has significant physical and emotional value. But depending on your geography (no need to mention it here) it’s good to have an inside option in inclement weather.

YAY !!! This is all good !!!

So glad to know for you...keep it going, and know I and others are cheering you on to success

Veeder14 · November 2018

Hi All,

I hope everyone is doing well. Here's an update.. yesterday I finally got my Breast MRI and my shoulders did ok but are sore. It's my first imaging since radiation ended since I couldn't do a mammogram due to the shoulder fractures. Just got the report, good news, no malignancy seen, only a small seroma in the left arm pit. I'm relieved. It seems like I've been waiting forever to get this done. Mammogram scheduled for next month.

The not so good news is that I repeated the CA 125 test in October and the results were double what they were before starting Tamoxifen in July. On periodic testing due to BRAC2. Requested and had the transvaginal ultrasound last week and my lining thickness grew from 2 mm to 17 mm while being on Tomaxifen for 4 months. That's 1 mm growth every week. Yikes.

Before starting Tamoxifen, I didn't know that Tamoxifen only blocks estrogen from breast tissue and gives estrogen to other tissues such as the uterus. I'm really upset that the Tamoxifen destroyed my uterine lining and I only found out because I pursued it. Even if I could switch to an AL (which I can't), I can't leave the thick lining as it's a cancer risk. Before starting Tamoxifen my CA 125 was very low, and transvaginal Ultrasound normal.

MO said to stop the Tomaxifen for now, been off 3 days. My stomach pain is gone, yeah. I'm just really angry because my only option is getting a hysterectomy (and taking out ovaries as well) and this disrupts my treatment and puts me at risk, not to mention dealing with shoulder and back pain while recovering. Like a lot of us, I'm so burnt out on surgeries, plus it's a big deal to me to have internal organs removed (will be my first time) and have a surgery that I clearly explained to the previous gyn I didn't want. Surgery date is 12/6.

star2017 · November 2018

Veeder, can you remove ovaries and start the AI? Do you have to have the hysterectomy?

Veeder14 · November 2018

Hi Star2017,

Unfortunately, I need to get the hysterectomy because my lining is 8x too thick from the Tamoxifen, which is a big risk for uterine cancer. I'm menopausal so the lining will never shed. As long as I take Tamoxifen it will keep growing thicker.

I just can't do the ALs because I've got severe osteoporosis. It doesn't have anything to do with keeping or removing my ovaries. Nothing is ever simple.

flowergal · November 2018

Hello Veeder and everyone ,

For some reason I am not getting notifications of posts and have been meaning to check in.

Veeder, What a bummer that you have to have surgery again. You have really been through the proverbial wringer! Wish I could give you a gentle hug! I hope and pray all goes well for you. I am happy you get a good report on the MRI.

Star and Josie, hope you guys are doing well.

I am learning to accept the lymphedema as a lifetime issue but will do the manual exercises and wear compression bra forever i guess to keep things stable. I am lucky not to have it in my arm but my therapist tells me this is an ongoing risk as it is for all of us who have had surgery /radiation. I have been going to nutrition classes at the Cancer center and find them quite informative. I still do my 2 mile walk per day but now that cold weather is upon us ( 29 degrees tonight) My hubby and I may join our local athletic center as he has back problems and we can both use the indoor pool and other amenities.

Take care everybody and I will start checking in to this forum more often to keep in touch.

YESproblems · November 2018

WOW....Keep us up to date with how it all goes!!

I stopped taking T just 2 mths ago....I'm hoping I stopped in time...but below tells why/problems I have had while on T....

IMPORTANT NOTES: I've been in the fitness industry since 2002. Up until 2007, I was a Personal trainer with free weights. I have been teaching ONLY Pilates, 4-6 days a wk(I own a studio) since stopping the free weights style. I pretty much Kegal, AT a MINIMUM, 50 x's a day. I have had 3 kids all natural/vaginal deliveries. I take yoga on my free time. If I"m lucky, that's 1-2x's/wk but usually it's once every other wk. I try to jog 1-2x/wk , but sometimes, 3 wks will have past before I get another jog in.

The first 2.5 yrs I just had hot flashes

I stated to have hip problems (left) about 2 yrs into taking T. I was diagnosed with a torn labrum , WHICH is repairing by a healthy diet and proper body mechanics.

4 yrs in (~Jan, 2018) I began to experience a constant, SLIGHT nauseous feeling ALL the time. My Oncologist response to this, "this is the new normal." REALLY!!!!!?

Aug, 2018, I take my self off T, cold turkey. Hot flashes began to fade., within ~2 wks, nauseous feeling is GONE!!

I wax my "bikini area" as well as more areas ~2-3 a yr. In doing this, MYSELF, I use a mirror...about a yr ago I noticed that, what I THOUGHT was the end of my cervix. I remember thinking, well, perhaps taking T, the lack of hormones are making some changes in there. At this point, no other thoughts, not even a concern for myself,

Jump to 5 days ago. November 1, 2018. I'm waxing. within 2" from the vaginal opening I see, AGAIN, what I THINK is my uterus, with a bit of a red cherry looking spot near, what looks to be, a tiny hole (which is closed) Now, I'm frightful...Is my uterus falling out??

I got a Dr. appt the next day. Great news it's NOT my uterus, it's my bladder, stage 1 prolapse RIDICULOUS!!

Veeder14 · November 2018

Hi flowergal,

Thanks for your good wishes for my surgery. My lymph OT has me doing the same thing as you. I just got a compression bra, and do the lymph exercises, plus wear the arm sleeve part of the day. I'm not sure what exactly determines if you have lymphadema. My OT isn't even sure I have it but said to do the above as a precaution.

Glad you are getting benefit from the nutrition classes. Joining a gym is great for days that are too cold to walk outside. Just heard we have a freeze warning for tonight, kind of surprising. But mostly just heavy smoke from the fire that started yesterday.

I joined the Wellness Program at our local hospital and have access to the gym for 90 days, and to nutrition and other specialists. It's all free.

Let's all keep in touch.

star2017 · November 2018

so sorry to hear that, veeder. I hope everything goes smoothly.

I had a bit of a break from tamoxifen when I had my exchange surgery and ooph. I just restarted tamoxifen a few days ago. My side effects from tamoxifen seem to be minimal, if any. Haven’t noticed much change since the ooph, tho I'm expecting menopause to hit soon. Mo said he’d give me a few months to adjust and then we’d see about switching to AIs v sticking with tamoxifen.

JosieO · November 2018

Veeder, Star, Flowergal,

Hello dear friends. I check this site frequently, always hoping to see an update from one of you.

Veeder, I feel badly to read your update. After all that you have been through, to get hit with this awful side effect from the tamoxifen. I join Flowergal in sending you a heartfelt hug. How frustrating that you had to bring this to the doctor’s attention, and still end up with surgery. Will be saying lots of prayers for you, especially on 12/6. Thankful for the good MRI report.

Flowergal, I give you credit for your diligence on the lymphadema. Thanks to you I am more vigilant, even with things like flu shots and blood pressure checks. Wishing you continued good health.

Right now I am in a sort of a holding pattern. Still taking anastrozole with no noticeable side effects. (Tamoxifen was never a consideration due to its stroke potential) Did have a bone density test which showed osteopenia in the hips. Oncologist prescribed increased vitamin D and calcium for now. Will consider bone building medicine in the spring. Continuing my daily weights and treadmill. Waiting for my first post-surgery mammogram in December. A little nervous as the day approaches, but must trust in my good doctors.

Wishing all of you good health and a restful Thanksgiving holiday next week. I give thanks for friends like you who got me through a challenging year.

Be strong, dear friends

Veeder14 · November 2018

Thanks Josie O, I appreciate you sending good thoughts for my surgery. Haven't had a post surgery mammogram but the MRI result satisfies me since the cancer didn't show up on mammogram anyways. Good luck with your mammogram in December. Weight bearing exercise, Calcium, and Vit D~your doing the right things for bone health.

I've been going to the gym but wishing to take a walk outdoors. I feel like we're suffocating from the smoke from the fires. Air quality in the unhealthy to very unhealthy range-Day 5. UGH.

Anonymous · November 2018

I've been taking anastrazole for not quite a month; no side effects that would make me stop taking it at this point. The most noticeable is that I my face gets flush most afternoons (I take the med in the evenings).

I've only skimmed through this long thread but noticed that someone said they were taking Vit D and Tums. Why would one take tums? My doctor never mentioned Tums , she has me in Vit D2 and calcium.

Thank you.

flowergal · November 2018

Hi viewfinder,

I take a tums ( actually it's Kroger brand generic )per day to "kill2 birds with one stone" for reflux and for calcium supplement.I get most of my calcium from milk and just started drinking almond milk vanilla flavored, non sweetened which has a lot of calcium in it. Good luck.I am on anastrazole also and have no sided effects so far.

flowergal · November 2018

Hi Josie,

I also have osteopenia and not sure when the next bone density will be done .I see the MO in Dec so I'll see what he says. Good luck with your mammogram. I was also anxious but got good news as I hope you will too!!!!! You are so right in saying the ladies in this forum have been such a help and support and i will also keep in touch periodically.

Have a Happy Thanksgiving . It seems more meaningful this year.

Beaverntx · November 2018

Happy Thanksgiving to all of us in the Spring '18 hormone blockers group. Catching up on reading the thread and it looks like our group, at least to some extent, represents the spectrum of responses.

For me, I had a thickened endometrial on the pre Tamoxifen pelvic ultrasound which turned out to be benign. Ended up having a total hysterectomy before starting Tamoxifen and have been taking it for almost exactly 5 months now with tolerable side effects. As long as I walk about 5 miles and drink 2.5 to 3 liters of liquids a day, along with 5 to 7 servings of fruit and veggies daily the constipation challenge seems to have been mastered and I am slowly losing some of my excess weight! Feel better too. Do think my already fine hair is a bit thinner on top and my nails may be a bit more fragile but not to the point of treatment yet. So, it looks like I am one of the lucky ones. Both my first follow up mammogram and my bone scan were good news-- no evidence of cancer on the mammogram/ultrasound and the bone scan indicated my osteopenia is stable.

That said, please know that I recognize that some of us are having very real struggles. I am hoping 2019, and the time leading up to it, will bring happier and healthier times for us all!

Anonymous · November 2018

Thanks so much flowergal . I see my oncologist tomorrow and will ask her about tums.

flowergal · November 2018

Viewfinder,

You are welcome .Hope that answered your question.

Beaverrntx -good to hear from you. I also am struggling with weight gain and walk 2 miles a day but I do like my ice cream so that doesn't help me much LOL.but hey, we have to enjoy some things in life don't we? I have lost about 10 pounds this year but it is creeping back up so I may have to eat less snacks and more friuts and veggies.I find that eating prunes helps with the digestive issue as does lots of water which is also good for the lymphedema.

Anonymous · November 2018

I forgot to ask about Tums. Duh! I'll give her office a call next week.

I saw both of my oncologists today and all is going as expected. I don't have to see them for three months. Yippe....I need a break from all the running to doctor's offices!

I actually lost five pounds during the last five months. I'm not trying to diet and, Lord knows, I need to get back to my daily walks. But I do drink a high protein drink almost every day and it does a nice job of filling me up for several hours...keeps me away from the snacks, most of the time.

Beaverntx · November 2018

flowergal, part of my anti constipation regime is dried mango and dried figs (both with no sugar added) as part of my daily servings of fruit; that and walking and lots of fluids every day seem to be working...Thank goodness.

viewfinder, I took tums (or the store brand of same) for several years as a calcium supplement. About a year ago I switched to calcium citrate but haven't really seen any difference in my blood calcium levels and my osteopenia is stable so not certain if the switch has made much difference.

Paco · January 2019

Hey ladies!

It's been a while since I posted. I felt amazingly good on Tamoxifen, a side from general aches in my feet, which fortunately went away.

In the past few months, I've been experiencing significant hair loss/shedding. It was something like 8 months after I started taking Tamox, not within the first few months. Has anyone else noticed this?

Ugh. I love my hair. I decided to step down the dosage to 10 mg a day to see if that helps at all...

Veeder14 · January 2019

Hi Paco,

Good to see you again. I'm glad your treatment is going well. I was on Tamoxifen for 4 months and the shedding for me started right away. It's slowed way down since I've been off of it. I saw my dermatologist last month and asked about how to prevent or slow it down. He suggested using Rogaine. I think it's a topical medication applied to the scalp. I haven't researched it yet but I will since I'll be starting on the Tamoxifen again.

I did start using a really soft brush. I have short hair so sometimes after washing my hair I just use the hair dryer and run my hands through it a few times instead of using a brush.

flowergal · January 2019

Happy New Year everyone!

Veeder, how are you doing? I hope you are recuperating well.

Paco, I have noticed a little more thinning of my hair since on Anastrazole, but since it blocks estrogen, I figure that is the reason. Luckily, I have thick hair so I hope it won't be a problem as I will not stop the anastrazole.

Saw MO last week and all blood work was good. Next is Mammo in Feb (1 year since surgery Feb 7)

On a completely different subject, we got a little dog last week ( terrier mix 14 lb). We lost our 2 senior babies in July and decided we were ready to bring a new baby into our home. He is just delightful, makes us laugh and helps me stop worrying about myself! He is only 1 year old so he is puppylike in his curiosity and energy.

Hope everyone on this thread is doing well .

Veeder14 · January 2019

Hi flowergal,

I feel like I've turned a corner in the healing stages from the hysterectomy surgery. I'm back at the gym and going on short hikes so overall I feel much better. Thanks for asking. My back, neck, and shoulders are getting less painful and PT is helping a lot. Waiting on restarting the Tamoxifen hoping my stomach/throat will heal from all the meds during surgery and 4 months on Tamoxifen.

How often is your MO ordering blood work? When I got my first yearly mammogram after the lumpectomy, the Radiologist took the regular mammogram pictures and then additional ones (ouch). I asked why and she said that they need an accurate picture of the breast after surgery, the old pictures will not be used for comparison anymore on my left side. Plus, an ultrasound was also done for the same reason, to create a new picture. I wasn't prepared for such a long app't. I'm also scheduled for a yearly MRI which I had done a few weeks before the mammogram which was clear. It was a good thing because the Radiologist couldn't tell if the blob she saw was another tumor or scar tissue. I had the mammogram and ultrasound sent to my breast surgeon who confirmed the blob was scar tissue. Hope this information is helpful to you.

Congratulations on getting your new dog baby. I love dogs. All my neighbors have dogs, mostly labs and I visit theirs as I don't have a dog of my own.

flowergal · January 2019

Veeder,

Glad you are doing better! It's about time for you to have some good stuff happen! My Mo said I will have blood work every 6 months as long as I take the anastrazole.He does a CBC, Chemistry profile including liver function, and 2 tests that are cancer markers. Since my PCP also does lab every 6 months,and I see him shortly after the MO, I had the MO order the additional labs my PCP does so I don't have to get stuck as much. When I had my first mammo in august, the tech told me I would always have a diagnostic mammo and ultrasound and that was the protocol. I don't know how often i will have to get the mammo so I will ask at my appt. in Feb.

Take care and continue your healing!

Paco · January 2019

Hi Veeder14 and flowergal,

Thanks to both of you for your feedback. I am concerned about the shedding but I understand that it is temporary and should level off (the operative word being SHOULD!) I just wonder if anybody else is experiencing such delayed onset SEs. I count myself lucky that at this point, the only SE I have is the hair loss. But it's cold comfort to watch my hair go down the drain with every shower!!

My hairdresser noticed but she also noticed my significant weight loss,which she said can also cause temporary hair loss. I lost probably 10 pounds since treatment ended, and actually, most of it was between September and October so I wonder if that is a contributing factor, or the culprit. I wish I could see inside my body and look at what's going on. Sigh.

Anyhow, hope the rest of you Spring Hormone ladies are doing well. I did step down from 20mg to 10 mg a day of Tamoxifen. If it is due to the Tamoxifen, it should lessen the symptoms, theoretically at least.

Cheers!

Veeder14 · January 2019

Your welcome Paco,

I hope the shedding shows down for you. Since mine started right away I'm a little worried about it. One friend I know bought a wig to wear when she went out places until she was off of the Tamoxifen. The good news is that her hair grew back pretty fast when the 5 years was up.

Do you have 5 mg pills or are you having to split pills? Would taking a 20 mg pill every other day be about the same?

Thanks flowergal.

Paco · February 2019

Well ladies, I'm afraid Tamoxifen has finally got the best of me and I'm taking a break for a month or so. I have been losing fistfuls of hair and I can't take the stress of it any longer.

If the hair loss lets up after a month, I guess I'll know it was definitely the Tamoxifen. Otherwise I'll see a dermatologist. Such a hard decision to make...

star2017 · February 2019

That's tough. Sorry to hear that, Paco.

Veeder14 · February 2019

Hi Paco,

Sorry to hear you have been having such a difficult time with the Tamoxifen and with hair loss. I did get a 2nd opinion regarding myself starting back on it and the MO told me that once a year taking a short break from the medication is ok if a patient is having a lot of unwanted side effects. Stay in touch.

flowergal · February 2019

Sorry to hear that paco,

I hope you find a solution to the issue so you can continue on a hormone blocker.

Veeder, hope you are still doing well in your recuperation.

I am doing well. Have my 1 year mammo and ultrasound the end of this month.

Spring 2018 Starting Hormone Blockers

Comments

Categories