Has anyone quit or reduced dosage of the hormonal therapy?
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Anyone here take an anti-depressant to alleviate the Tamoxefen symptoms?
I started taking Zoloft 25mg 3 years ago because of a Breast Cancer scare. It was in preparation for the menopause symptoms. Meanwhile, my PMS symptoms improved dramatically, and I was not diagnosed with Cancer at that time. So, I stayed on it.
More recently, I was diagnosed and treated for breast Cancer and LCIS. My one and only treatment for distant recurrence will be Tamoxefen. My zoloft dose was increased to 50MG because well, now I am depressed and anxious. (of course I am) Talking to MO next week, and I think I want to migrate to Effexor because zoloft has been found to moderately hinder Tamoxefen metabolism.
Any info is appreciated.
Thank you
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Princess. I started letrozole after you, November 2019, and I already notice that join bone pain are more frequent. I have foot numbness as well but it was that way after Taxol and I do not know if the Letrozole makes it stay. I have hair loss and I do not know if there are anything I can do to prevent it because using more natural shampoo did not doo much.
How your doc is following up? I am getting mammogram and I will have soon bone scan for bone density. Given that the mammogram checks the brest only, how docs know if all is ok in other part of body such as in bones?
If the pain is just related to the letrozole it is still, I guess, a better news than other problems in bones.
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Margun...unfortunately there is no real follow up to detect metastasis or stage 4. It took me a long time to wrap my head around that. The rule of thumb is if you have any new symptoms that last 2 weeks or longer you should get it checked out. But at that point it's already stage 4. Hoping we can do better in the future. Good luck to all
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"The rule of thumb is if you have any new symptoms that last 2 weeks or longer you should get it checked out. But at that point it's already stage 4."
Well, even after 2 weeks, most mets scares turn out to not be mets. Over time I would guess that the vast majority of us who've had invasive cancer will at some point have a mets scare. As we age, we develop new aches and pains and cysts and various other things, and for anyone who's had invasive cancer, those things can present similarly to mets. So mets scares are common. Developing mets, even for early stagers, is more common than we'd like (and even 1 case is too many) but it's no doubt a small percent of mets scares.
The point, I think, is that IF some new ache or pain or lump is already mets, it's been developing for a long time, but was too small to be undetected by any currently available screening method (hence the reason for no mets screening). So waiting a couple of weeks to see if it starts to resolve on it's own isn't going to make any difference to the treatment plan and prognosis.
And yes, we definitely need to do better in the future. On this count, the future can't come quickly enough.
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Marie914 - I just took one Senokot and that was enough to do the trick! They take about 12 ours to kick in for me but I didn't want out-of-control impacts.
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I know we've gone off topic. But one of the issues I have with no screening is, what if there is a local recurrence that if left undetected goes on to be mets. They say, you'll be able to feel a lump, it will be obvious. But that is not necessarily the case with ILC. There is not enough support for ILC and insurance does not take it into account. I was able to convince my Dr. to give me a CT scan, one year out from surgery, and by some miracle insurance approved it. Got my results yesterday, all normal, yay!! But they denied my bone scan so we are appealing.
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JLBinPDX- I also inquired with my oncologist about taking brand name Arimidex as I had read it may have fewer side effects. She agreed and said that she has had patients do well on it. SO, then like you, I found out the price was just ridiculous. Pharmacist said cash price was over $5,000/month. GoodRX quoted over $1400. My insurance said it was subject to my (high) deductible but then would be $120 copay. Then I remembered that I read on this site about Eagle Pharmacy that dispenses name brand Arimidex for $60/month whether you have insurance or not. So my oncologist sent the prescription there and I received it the other day. Going to start taking on Monday so fingers crossed. Anyway, I just wanted to throw that out there as an option.
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JRNJ. Congrats for your clear CT. I have my mammogram and bone scan coming up soon. I hope all will fine despite my join bone pain (blamed on letrozole). My bone scan is due I think to measure density and not to see other things. But I hope it will give some indication on overall bone state.
Why you are wondering about possible local recurrence if you had, based on your history, double mastectomy? Fortunately, the science came up quickly with Covid vaccine but after centuries they did not Cameron with mor accurate screening or, more importantly for a cancer cure. Unbelievable
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The problem, Margun, is that "cancer" is an umbrella term used to group together hundreds of different diseases. What the diseases have in common is that they are "characterized by the development of abnormal cells that divide uncontrollably and have the ability to infiltrate and destroy normal body tissue." (quoted from Mayo Clinic website). But other than that, they can be very different.
Even within breast cancer, a triple negative cancer is very different from a triple positive cancer, for example. It's highly unlikely that the same "cure" would work on both, and we know that meds that are effective on hormone positive cancers are not effective on hormone negative cancers.
As for screening, it is shameful that we don't have better screening. But again that's not just a breast cancer issue or a cancer issue. If we think breast cancer screening is difficult, try prostate cancer screening!
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Polkadot1, I'm going to try brand name Arimidex next week too. Fingers crossed for both of us.
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Beesie, can you please explain "mets"? I'm not clear what you're saying, I guess, without really know what "mets" refers to.
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Hi JRNJ. I'm on Anastrozle, the generic of Arimidex. I've read a few things--here and there--that the side effects might be less on Arimidex. Well, I looked into getting on Arimidex instead of the generic--$4,100 for three months AFTER my good health insurance (that I pay $711/month for). I just can't believe that. Are you really going on Arimidex and is there some way to get that price way, way down?
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Polkadot1, what? How can that possibly be? How can Arimidex be $5,000/month at one place, somewhere in between at others, and $60/month at Eagle Pharmacy? That makes no sense. Are we positive that it isn't the generic? I'm just really suspect that it'd be .05% at Eagle--just too weird to make sense. https://www.eaglepharmacy.com/drug/arimidex Anyone?
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JLBinPDX,
"Mets" is a metastatic recurrence, i.e. a recurrence of the breast cancer in an area of the body outside of the breast, be it the bones or the liver or the brain or somewhere else. This is equivalent to Stage IV. Breast cancer is the breast is 100% survivable - our breasts are not organs vital to our survival. All mortality from breast cancer comes from the development of metastatic breast cancer, whether it is Stage VI de novo (the patient is metastatic at time of initial diagnosis) or a metastatic recurrence (which can happen to anyone who's had an earlier stage breast cancer).
By "mets" scare, I mean something that happens that could signal the presence of mets, and that needs to be checked out to ensure that it isn't mets. I had a mets scare a few years back when I had a breast MRI that picked up a lesion on my spine. It was an "incidental finding" - the MRI was to check my breast but it happened to find this spinal lesion. The description of the appearance of the lesion was suspicious enough that my MO's attitude completely changed when he read the report. When I first walked into his office, given my early stage diagnosis, it was clear that he wasn't sure why I was there. Then he read the report and became very serious. Fortunately that was a mets scare that turned out to be nothing. My MO pulled in their Radiologist who specialized in spinal MRIs (vs. the breast MRI Radiologist who had reported on my MRI) and they looked very closely at the imaging and concluded that it was a benign lesion. I haven't had a problem since then so it appears, thankfully, that they were right.
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Okay. Thanks. Very helpful.
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hello,
I have had a bad reaction to Letrozol and anestrozol. I got extremely depressed on both and that was with me taking antidepressants. I had a full hysterectomy with ovaries removed. I wonder if that will help prevent my estrogen positive cancer from coming back? Any comments on this are welcome. Thankd
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Sarah2122, After menopause most estrogens are produced in fat tissue, but I have read that a small amount comes from other organs. Most swear here that exercise helps with their mood and body aches. I agree. Most antidepressants take 6-weeks to kick in. I started taking Tamoxifen slowly and built up my dose. Others on letrozole take it every other day and build up to the right dose. What has your MO suggested?
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Margun,
I started Letrozole this year, in March. The SE are starting to rev up a lot more now.
What my MO said about metastasis is that I would feel differently than just aching joints, much like I felt at my first diagnosis. Back then I knew something was wrong because my periods were returning and I had zaps of pain in my left breast. I was also exhausted all the time.
So the MO said that I would, for example, most likely lose weight without trying and probably feel off, in general. I guess I feel "off" in general with letrozole now, but I don't have the ominous feeling that something is wrong the way I did before my diagnosis in 2017. I am tired all the time, but no zaps of pain currently.
I'm getting my annual mammogram in two weeks, then bone density scan in January.
Take care, everyone.0 -
Just read your post and pretty similar to my experience. I finally gave up in 2/20 after 2.5 years of trying every AI plus tamoxifen. 6 months later had new changes on abnormal mammogram leading to a biopsy. Thankfully it was just scar tissue changes, but immediately went back on arimidex. Made up my mind I'd stick with it no matter what, and am doing well. Good luck to you on this journey!
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Well, damn, PrincessButtercup, if weight loss is a sign of problems, I'm safe because I've probably gained 25 pounds since starting AIs in April or May of this year. I'll blame half on Covid, but half just must be the AI.
And Germangirl16, are you on the real Arimidex? If so, may I ask if your insurance covers it or if you, too, are getting it through Eagle Pharmacy. Apparently it's $1,400/month even with my insurance, but--supposedly--it's $60/month through Eagle Pharmacy. I'm still skeptical as that just makes NO sense. Still trying to figure this out and see if I should switch from the generic Anastrozole to Arimidex.
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my bone scan showed bone loss. My doc prescribed calcium ( I was taking vitamin D already). I hope the loss stops. I am young and hopefully will need my bones for a longtime. Besides Tamoxifen there is one anti hormone pill which affects the bone less?
I have hair loss as well and if anyone has some natural remedy, it will be nice to hear
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JLBinPDX it is hard to know if switching generic to brand name will make a difference in SEs. Everyone is different, and it mignt take a several months before you notice a difference. In 2017 I started generic anastrozole and noticed SE immediately with increasing joint stiffness and locking fingers. I stopped taking it. I looked into Arimidex and even ordered 30-day. I think the reason I did not take it was that my fingers were getting better. After a few months of nothing I asked about Tamoxifen and started taking that. When a 3rd BC was Dx'd in 2019 my oncologist put me on Ibrance. I think she wanted me to use Faslodex and I just did not want to, so she said I could take Arimidex which I order through Eagle Pharmacy. I do have joint stiffness and one locking finger, but it is not as bad as it was on a generic. But the problem is, I think it is starting to get worse. I think acupuncture helps. A while back tried electrostim with acupuncture, at first I thought it helped, now I'm not sure.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Referred to lymphatic therapist. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest, neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed. 10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance.
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Margun I too experienced bone loss while premenopausal on Tamoxifen. My Onc told me she has seen this happen, but not often. My loss was significant enough to put me into osteoporosis even with supplementation, exercise, etc. So off to recast I go after I get a release from my dentist. I would advise getting Dexa scans once a year. None of these drugs are easy on your bones and while Tamoxifen was supposed to be less destructive, for a lucky few it can be quite harsh. I don't want anyone else to get the same nasty surprise I received. We did the standard protocol and waited two years between scans after starting the meds - don't do that push for yearly to catch this issue as quickly as possible.
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I stopped taking my anastrozole in September after being diagnosed on OCT by my optometrist with epiretinal membrane a.k.a. macular pucker/pseudo hole (eye condition) in left eye which is affecting my vision in that eye. I am awaiting an appointment with an eye specialist. In all fairness, there is most likely a multifactorial web of causation (I am also diabetic type 2, and 67 years old), but in view of research linking tamoxifen with traction in eye. I feel that in my case, stopping is warranted for now. I had been on anastrozole for 3.5 years. I am still working (document specialist at national law firm in Toronto) and really need a good modicum of visual acuity.
Here's a link to some of the articles found on PubMed: PubMed
I think there's more of a risk of this happening in older patients.
Other than the eye condition, I have never felt much pain while on the AI.
Does anyone else know anything about this or have experienced this condition?
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my last chemo was on July 26 2019 and I am on lettmore than 1 year. Today, I felt consripated and when i tried a bit to force I end up on the floor second time after chemo feeling dizzy. I took 2 laxatives but I was able to go bathroom after 1.5 hr taking the laxative. Which was supposed to work after 6-12 hrs. I am not sure it was constipation or as my leg muscle are stiff my intestines are getting lazy too. Anyone had a blood pressure drop while a kitty forcing? Sorry for these embarrassing det
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Margun , It isn't uncommon to have a vasovagal attack while straining to have a bowel movement. There are posts on constipation. After my hysterectomy the doctor told me to take 2-colace a day with Miralax. It takes 3-days usually for miralax to work. Before I left the hospital they gave me senna to take as well. Remember to try to increase your fluid intake and that will also help your blood pressure. Best wishes.
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thanks flashlight for answering. All the best to you too
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I wanted to offer some thoughts from a recent Zoom meeting with my oncologist. To start, I didn't know why estrogen levels weren't measured so you could see if Letrozole or Anastrozle, for example, was working (if you were then able to see lower levels). I know now that levels are so low already that there isn't a test that accurately measures estrogen. I switched from Letrozole to Anastrozole (I thought the second would be better but they're both about the same) and have experienced probably 20 pound weight gain, hair loss, and joint pain (one thumb more than any other joints--how weird). I went down to one pill every other day, but I didn't really notice an improvement in side effects, so what's the point. Well, without a test to tell me if my estrogen is down, my onc mentioned that the side effects--and my very dry skin, hair, etc--tells him that it's working. He even asked about vaginal dryness--I was impressed with this. Not an issue when you're not having sex, I suppose, but good to know that there's a cream or something he mentioned that would help with this (as soon as a great man comes along and sex begins once again). I hadn't considered all of these factors and I'm now settling in with the idea that the stupid side effects are worth the reduced risk of reoccurance. I should be saying "ya, thank goodness there's a pill that'll cut the reocurrance possibility in half," but I'm still pissed at the side effects so it may take some time to get to that point.
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jlbinpbx, thanks for the info. I get nothing from my Drs. I hate them all. I had a bone scan last Friday and they have not called me with the results or returned my call. I had a panic attack last night, I thought the Dr. was calling me at 9:00 at night to tell me they found something. I was able to find the results online and I think I'm ok. I've tried Aromasin, Anastrozole and am now on brand name Arimidex. Not much different than generic. I'll try Letrozole because I'm still in miserable pain every day, but I'm not holding out too much hope it would be any different. I take them every other day. The panic attack made me appreciate being OK, but I'm still pissed too that I'm in pain every day. I haven't lost any hair for a while, it's been growing back thick and curly and I have a ton of it. I've always hated my hair, used to get keratin treatments. It's just starting to fall out at a normal level, but I'm still scared that will change from what I'm hearing. I gained 15 pounds during chemo. Lost a little on the pills because they make me feel sick and give me irritable bowel. I'm trying to gain weight for DIEP.
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JLNBinPDX - I've been told that monitoring estrogen is not part of the standard of care for cancer patients taking AIs. You comment that they are too low to be measured accurately explains something that I have been very frustrated about, lack of metrics. I am taking brand name Arimidex which I buy directly from the Eagle Pharmacy in Florida at a fraction of the cost for what insurance would charge. I have been taking it for a year. The SEs seem to be less than with generic, but my hair has definitely thinned, find hair all over the place, my hands are stiffening, and I have one finger that locks up. I think vaginal dryness may explain why bike riding is often painful even with good bike shorts. Seems to be less with Mtn Bike and shocks than with no shocks. A stationary rucumbent bike at the gym did not seem to cause problems, but it has been almost a year since I've hit the gym. I have yet to see a gynocologist to see if it might be something else or if there is something else I can do to make bike riding more comfortable. Just too many DR visits lately, feeling like a lab rat,and besides it is winter. Also take Ibrance in combination with the AI. DR expressed some concern with the most recent blood work and indicated whe might change treatment pending results of scan scheduled for early January.
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