Spring 2018 Starting Hormone Blockers

7 weeks into Letrazole and currently 2 days into Medrol for a pinched nerve in the spine. No side effects from the Letrazole, some from the medrol. The hair seems to be coming in faster allowing me to put the chemo caps aside. Now that summer is here (where I am), I usually find the blanket kicked aside. Having a hard time imagining taking this med for 5 years.

hey Kay, goat cheese crumbles and tasty gelato is not a bad way to put weight on! Better than Doritos.

Still, I also feel like I may have developed a little pooch as well but it might be water retention...? Nothing else has changed in my diet. Hmmm

One SE I've noticed: vertigo. I feel lightheaded at weird times which is very unusual for me. It's been 5 weeks and fairly manageable. Just have to keep the reminder (to actually take it) on my phone - hasn't quite become a habit yet.

Ta ta for now!

I am doing rads now and will start hormonal therapy in July. Had a blood test this week to see if I am pre menopause or menopausal (I am 54) and will take a bone density test in a few weeks. MO said Tamo if I am pre-menopausal, and something else if I am post menopause. Not looking forward to all the SE you are all getting. I wonder if I can postpone starting hormone therapy until after summer travels. Is there a time frame when you need to start after radiation/surgery?

Mimi

for those of you experiencing veryigo, the 24 hr less drowsy Dramamine is the exact same medication docs prescribe for vertigo - meclizine. 50mg is the dose for veryigo or 2 of that particular Dramamine tablets. Hope this helps!

Kaywrite,

That's great you don't have SE. I have my fingers crossed that it continues this way.

Mimi

There seems to be all kinds of good news on the cancer front today. In case you missed this one (re chemo vs endocrine/hormone therapy):

https://www.nytimes.com/2018/06/03/health/breast-c...

I never had an Oncotype test. I'm not sure why....

I also don’t remember anyone saying anything about oncotype to me. I only heard about it on this site

I got an Oncotype DX and my score was 17, so I can skip chemo and started the radiation. According to my Oncotype test, they say my recurrence rate in 10 years with 5 years of hormone therapy is 11%. I know there is an option to take meds for 10 years. Is anyone doing that?

Mimi

Hi! Just a note of encouragement. Diagnosed April 2013, lumpectomy, IDC stage 1b, multifocal, 1 @ 7mm and 1 @ 5mm. Clear margins and nodes. 21 day rads. Just finished 5 years anastrozle...never missed a day. Had acute onset of many side effects about week 2...joint pain, muscle pain, weight gain (20 lbs in 2 months), vaginal dryness, insomnia, etc...the usual complaints. I stuck with it, as I did not want a recurrence. Well, three weeks off of anastrozle and my body is returning to normal. Lost 4 lbs, dryness is gone, joint pain reducing, muscle pain gone...I realize I am now 66 and not 61 and aging will have an impact on my body, but I feel so much better. Just thought I would share a positive with you. Stick with it

Salasila- I did oophorectomy and now on letrozole. SEs are much milder compared to tamoxifen. Far less muscle/joint pain, brain fog greatly improved, still have hot flashes. Very happy with the switch. The Lupron is going to shut your ovaries down so you can take the AI. AIs were found to be more efficacious than tamoxifen in post menopausal women. That's likely why your doc wants you to give it a try. If it works better for you and you're done having kids you may want to consider an oophorectomy-Surgery was very easy with no pain afterward. You may find it's the tamoxifen causing the pain that you're thinking about a glucosamine supplement for. It may go away on its own with the switch

Here is a link to the "Ask An Expert" Hormone Therapy page at Johns-Hopkins Breast Center. Your question might already be there, if not, just ask - I've used it twice (re positive margins) and someone has always answered me within 24 hours. It was useful information I was able to take to my MO:

http://www.hopkinsbreastcenter.org/services/ask_ex...

Here is their general Ask An Expert link for all topics:

Hi, all--Another update.

I was very concerned about taking aromatase inhibitors, because I had pre-existing arthritis in my hands, spine, and hips; in fact, just after I was diagnosed with BC, the orthopedic surgeon had recommended hip replacement, but he also said I should wait until I was done with surgery, radiation, chemotherapy...whatever treatment oncology said I needed.

I had my surgery in February. radiation in March and April; and I started anastrozole on March 1. At first I had some exacerbation of my arthritis pain and some hot flashes. The hot flashes calmed down after a few weeks. But the joint pain continued. By mid-May, I had so much pain that I went off anastrozole for a week as a test. Sure enough, I was able to go up and down the stairs in my home without pain after seven days off. And then I went back on, because my test had not been approved by the medical oncologist and I wanted to get his opinion on how to manage the joint pain when I saw him in early June.

Fast forward. I now have constant pain in my wrists, shoulders, spine, hips, knees, and ankles. And I can barely walk; I am not even leaving my house by myself, because it hurts so much to walk, and since I am having trouble simply walking with my cane to and from the bathroom. It is difficult to find a comfortable position for sleeping as well, and I keep waking up in pain.

When I saw the MO yesterday and told him my symptoms, his first comment was, "Then you should go off of it." He doesn't think switching from anastrozole to letrozole is going to help me. He wants me to take tamoxifen. I hadn't read much about tamoxifen but I told him I would think about it. Right now I just want to get the anastrozole out of my system, which he said would take about two weeks.

So that's where I am at the moment. I have a feeling that my pre-existing arthritis was part of the problem for me.

I know my experience is unusual, so do not be discouraged if you're just starting anastrozole. Many women do fine on it with minimal SEs. I had hoped that would be the case for me, but I'm also the queen of unusual responses to medical treatment (and I won't bore you with all those issues) so I had a premonition that my response might not be typical.

P.S. I should add that my OncotypeDX score was 15, so my risk of recurrence is lower than many. The MO said my choice is between tamoxifen and taking nothing, so I have to decide which risks I'm willing to take...side effects or recurrence risk. He'd prefer I take the tamoxifen but he understands if quality of life issues are more important to me.

Hi all, greetings from British Columbia, Canada. SAHM of 6, proud grandma of 8. I am just starting down the yellow brick road of hormonal therapy, and it's good to be able to share with others on the same journey.

In January I discovered a small lump in my right breast. A biopsy in February showed it to be IDC. On March 20 the surgeon performed a nipple-sparing lumpectomy and axillary dissection. The lymph nodes were clear, but margin tests showed DCIS so on April 10 (a week before my 66th birthday) I went back for a full mastectomy. My head is spinning! It all happened so fast. Still adjusting to the loss of the entire breast, but am happy to forgo the six weeks of radiation that would have followed the less invasive surgery.

Kaywrite, thanks for the article on the Oncotype testing. Now I understand why the BC Cancer Agency sent a teeny sliver of my tumour all the way to California to find out if it was chemo receptive. (It wasn't!)

However, the tumour is estrogen-receptive so I have started on Tamoxifen - it will be two weeks on Monday. I was terribly worried about the side effects, having no desire to revisit the hot flashes, night sweats, and other joys of menopause; but the MO said that if they were too bad we could switch to an aromatase inhibitor. (He recommended Tamoxifen as I am a small woman, and loss of bone density can be a side effect of AI).

I sailed through the first week, congratulating myself on having escaped the yucky stuff; until I woke up one morning drenched to the skin. Sigh. But aside from a couple of night sweats and a random hot flash or two, things seem to be going well. I have been told it will be several months before I will know the full extent of SE. I go for blood tests next week, and a follow-up appointment is scheduled in three months.

When I started the meds I took it in the morning. That evening I experienced sharp pains in the bones of my left leg above and below the knee. I took ibuprofen and applied a heat pack and the pain went away. No repeats until today, when I had intermittent stabbing pains near the right hip joint - mild at first, but by evening they were so intense I was gasping and hanging onto things. Gone now! I am not sure whether this is a SE of the tamoxifen. Has anyone else experienced this?

I am also worried about a side effect I was not aware of until yesterday! I plan to have reconstruction down the road, leaning toward the DIEP Flap because after six pregnancies i have lots of abdominal skin to spare. Boob job and tummy tuck in one go! Woo hoo! Well, yesterday I was idly perusing the Tamoxifen product circular before chucking it in the recycling bin. I mean, who reads those things, right? After all, the MO had already gone over all the warnings and SE in detail - or so I thought. Imagine my shock to read the following:

"If you are going to have a breast reconstruction operation where your own tissue is moved to shape a new breast and this occurs weeks to years after the primary cancer operation, tamoxifen citrate may increase your risk of complications, including complete loss of the new tissue."

I am going to add this to my growing list of things to ask my oncologist.....

It’s cool to see some my fellow radiation ladies from April/May radiation group! Hello!

Lula73 and PACO, thank you for all your information! It was all very interesting and informative. I finished 25 radiation treatments last Thursday and started Tamoxifen the following day (my oncologist wanted to wait until after radiation Incase I had side effects from radiation, not to make it confusing). So I have been on tamoxifen for nine days as of today. Feeling some discomfort in my left hip for some reason. I don’t know if it’s even related to tamoxifen.