Share important questions and provide support to others experiencing breast cancer and treatment-related pain.
Posted on: Sep 13, 2018 05:35PM
Is anyone having severe side effects post chemo and radiation while taking estrogen blockers? Since treatment I have not been able to get back to pre cancer life style. I am in chronic pain with fatigue and insomnia and cognitive issues. Weight gain as well. I don't feel like I can work let alone do many things during the day and I feel like that is hard to get anyone to truly understand. Is anyone else having these issues? I feel like I am crazy.
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Sep 13, 2018 10:42PM Lula73 wrote:
let us know which med you’re on. Yes these are common side effects. But sometimes switching to another one helps. There are also several different supplements and prescription meds that can be used to combat the side effects.
Sep 13, 2018 10:48PM NotVeryBrave wrote:
What medication are you taking? You might ask about trying another one. I've read about people doing better or worse on different meds.
I had problems with concentration and depression on Tamoxifen as well as muscle spasms and vaginal discharge. I'm considering trying an AI if they determine that I'm menopausal, but I have osteopenia so worry about my bones.
Sep 13, 2018 11:21PM LisaBS wrote:
I started taking anastrozole and then the doctor switched me to exemestane because of my side effects with anastrozole. I also have osteopenia.
Sep 13, 2018 11:46PM - edited Sep 14, 2018 04:24AM by Moderators
hello I'm Tammy, I am going through the exact same things and feelings. They want to put me on an antidepressant that I was previously on many many years ago. And which I don't want. However I don't want to feel like this anymore either. It's not fair to my husband and my son, I would love somebody to talk to. This is all new to me new form new asking for help please reach out. Thank you Tammy
(Edited by Mods to delete member's personal phone number. We strongly recommend not posting personal information on a public forum, for your own privacy and security. Please exchange contact information using the Private Message feature.)
Sep 13, 2018 11:49PM Tammyterrel wrote:
sorry Lula I just saw your in North Carolina, you may not be able to get back in touch with me if you're close to the storm. Or in the next three days being affected by it. However I feel what you said is true to me too I'm in Florida and you can call me anytime. I'm up all night with this new medication on the estrogen blocker. Even with the alternative medications nothing helps. I will answer any time leave a message if I don't. Please survive the storm you have a friend in Florida.
Sep 14, 2018 01:33AM LisaBS wrote:
I have trouble with both meds as well.
Sep 14, 2018 07:33AM CBK wrote:
I have been on anastrozole, off once and back on since April 2018. The side effects have been awful for me. I’m pretty certain there are other things contributing to this. I have CIPN from taxol and had my ovaries removed while being perimenopausal. So my drop in estrogen could be much more extreme than the average person.
My joint aches are pretty intense but finally improving. I have had severe dizziness (that has seem to subsided by moving my dosing of anastrozole from late afternoon to first thing am) sleeping and hot flashes have improved overnight with the shift in timing of dosing.
I have tried a few things that have worked without a doubt for joint issues. Acupuncture which works for hot flashes as well. Of course my insurance doesn’t cover this so it gets pricey but some plans do and it’s well worth a try. Both my oncologist and psydiatrist are huge proponents of this. A strong yoga practice has literally saved my life through this transition. Probably the single biggest help to the side effects of anastrozole and CIPN.
I take a lot of supplements the B vitamins with complex’s, D3, calcium with magnesium and K2-plant based, high quality fish oil and turmeric.
Things have gotten better on anastrozole and believe me there were days I could not do a thing. My oncologist and I decided to switch me to brand Arimidex to see if that may further help my issues. I’m just waiting for medication to arrive from mail order pharmacy.
Oh I start PT this week too. I’m still undergoing breast reconstruction so there is a lot going on but honestly that doesn’t seem to be a factor. All of this started once my ovaries were removed and I was placed on anastrozole.
Oh i walk a lot with my dog, nothing more therapeutic than that! Movement movement movement. My Dr says critical to get 30 minutes aerobic activity per day. Research shows it lessens side effects.
My Dr wanted to put me on cymbalta for CIPN that is probably exasperating this, well not probably is definitely, but I haven’t done that yet. I have it in my treasure chest just waiting. Ha
You got to fight but don’t let ANYONE tell you it’s all in your head! And it does get better. I cry every day, tears of joy when I see little glimmers of “I got this”.
Sep 14, 2018 10:45AM JoE777 wrote:Hi Lisa, Sorry for the long post, but you sound like me in 2012. my first AI was letrozole in 2012. Took it for a year then switched to exemestane for about a year but couldn't stand it. SE-bone and joint pain, never sleeping, lose of appetite, hair thinning, severe depression and mood swings, couldn't walk for any length of time in the sun without weakness, felt like I had metastatic cancer. The doctor gave me antidepressants which did nothing but tamazapam helped me to stay asleep when I drifted off. After two years I moved to Texas when we retired so I stopped the AI and was left with something like fibromyalgia. New primary doctor put me on cymbalta which did help but had it's own SE. This year I was diagnosed metastatic to bone and lungs. Back on letrozole in combo with kisqali and zometo infusions. The side effects are horrible but it pulled me back from a dark place from where there was no return. Try to work closely with the doctors to try to relieve the SE but I know there has to be some quality of life . My cancer may have gone rogue with or without letrozole but doctors can't say because there is always A percentage of distant metastasis with early stage HR +. I suppose I would have stuck it out if I could have seen my future but I had 5 really good years. You can see my signature below. Hang in there. Be vocal, do what's best for you, stay active, be vigilant but live the best life you can live. I really feel like you'll be able to work out the best path possible for you. Hang tough, kick butt. Cyber hugs and Peace. Jo
Sep 27, 2018 03:27PM LomLin wrote:
@ LisaBS I know how you feel, I am not back to a pre cancer life style and get a bit depressed thinking I will not get there. I am on Tamoxifen and not liking how I feel on it. Sometimes nauseous, definitely anxious. Pain, yes! Like it is part of my life now. I wake up with new pain somewhere else. Or not having pain where I had it previously. Still is very tender, sore, shooting pains, etc. on the surgery side. I also had radiation for 20 days. I too feel like I am going crazy. It is hard to find people to understand what you are going through. Currently I am looking into support groups, while online helps I think real interaction with people would be helpful as well.
Sep 30, 2018 05:06PM Maxine088 wrote:
I just login in for the first time. I'm her2new positive. I've finished 12 weeks Chemo, 20 radiation for stage 1 breast cancer since I'm not in menopause I hav to take Zoladex once a month injections, Arimidex pills every day . I too don't feel like myself post BC diagnosing not able to sleep at night more then 3 hours and then awake for 3/4 hours hot flashes. But since I've started taken Arimidex I fell horrible head aches , feel off balance wanted to know if anyone else has taken Zoladex, and Arimidex . I feel like I'm going nuts!!
Sep 30, 2018 06:11PM Snazzyiron wrote:
I am having trouble also with Arimidex. I am in my ninth month of taking it and now my hair is really falling out and I am freaking out. Has anyone else had this happen? Also, my knees hurt so much that it hurts to turn over in bed. I feel like quitting the Arimidex, but everyone tells me I can’t. What can I do about my hair and my knee pain. It is devestating to me, way worse than my surgery or radiation. Thanks, Rit
Sep 30, 2018 06:27PM Runrcrb wrote:
LisaBS - you aren't crazy. You and your body have been through a lot in the past 15 months. I'm 28 months out from diagnosis and still have periodic pain on my right side. I have significantly less pain than a year ago. Hopefully that helps. Regarding AI - we are all different in regards to what works with the fewest side effects. I started on anastrozole and was so tired and sore that I was sure my thyroid had failed. Fatigue disappeared almost immediately upon switching to exemestane. I see you are on that now. By process of elimination, I determined that exemestane was causing my insomnia; switching to morning took care of that. If you don't already, consider exercise. As tired as you are, it will help. I take magnesium and tumeric (advise and approval by my MO respectively) and caltrate for bone loss.
Chemo brain is real. I also think many of us experience grief and that does a number on the cognitive side of things. When I was undergoing chemo I ended up pulling aside a coworker to tell him what was going on because I felt so stupid at work. Radiation was worse for me - considerable pain daily, that increased for 8 weeks and took 12 to get down to a steady three on the 1-10 scale. It was distracting.
You are still in the throws of cancer - be kind to yourself and experiment with things to see if you find some combination that works.
Sep 30, 2018 06:29PM Mom2Gram5 wrote:
I’ve been on Leterozole for 5 months now. I have leg pains even though I use the treadmill 4-5 times a week. Also have hot flashes,weight gain and fatigue. I just don’t feel like myself. It doesn’t seem like the Drs. really care too much about the side effects. I am wondering just how much worse is it going to get. I agree- if you dwell on it too much, it freaks you out!
Oct 3, 2018 08:19AM Maxine088 wrote:
first you should contact your oncologist and have them switch you to another drug. I spoke with my doctor yesterday and he told me to stop. I tried it for three weeks in August, doctor say try it again once every other day for a week or two still made me feel horrible headache, dizzy knees aches and sleeping three hours at night. I must say never tried taking in the morning. My sister in law say she had to try two different drugs also. Anastrozole is not the brand it’s generic don’t know if that was a difference for me too. Good luck to it help if u have a good doctor who listens as well
Oct 26, 2018 06:36PM snooky1954 wrote:
Hi, CBK, I noticed you said Tumeric----- I also have used it for the last year while I was on a AL (Arimidex). My Ocn. Nurse Prac. just told me last week to be careful of that supplement. (I use many and she's well versed in interactions) as it messes with your estrogen levels. Also, Arimidex, did not work for me. Cancer progressed. NOW, I'm not implying that turmeric was the cause, I'm just putting info out. Blessing!
Oct 27, 2018 11:50AM CBK wrote:
I’ve seen that, despite both my MO and another cancer Dr. telling me it’s ok!!
I didn’t take it long and I’m off it now! Let’s see what my BS says in a couple weeks on f/u !
Blessings to you as well!
Oct 27, 2018 12:43PM leftduetostupidmods wrote:
I was on all three. My onc switched me from one to the other to the other and I had such bad pain from all three of them that he took me off AIs after 4 years. Also severe osteopenia.
They caused rapidly advancing osteoarthritis especially in my cervical spine. 4 years later I am dealing still with severe chronic pain (I'm on opiate pain management and I'm slowly losing function of my hands. And it will never get better, only worse, like all degenerative diseases. My spine dr. told me that at the first appointment he was shocked when he saw me as he had looked at my Xrays and CT scans without noticing my age and he thought he was going to see an 80+ y.o. patient, my spine looked so bad.
Nov 8, 2018 03:20PM - edited Nov 8, 2018 03:21PM by macb04
They are actually doing studies now that combine Tamoxifen PLUS Progesterone with very good initial results in mice, so now they are starting Human Trials.
Carroll and his team uncovered a possible explanation for why women whose breast cancer cells carry two key molecules – called the oestrogen and progesterone receptors – do better than those whose cells only carry the oestrogen receptor. Even when they receive the same treatment.
They revealed that when signals were sent through the progesterone receptor it slowed down the growth of breast cancer cells. To find out if this had potential as a treatment, the researchers tested a new combination of hormone therapies and found it slowed down tumour growth in mice.
This was a really important study, but had only been carried out in mice, so it was too early to say whether it could help treat women with breast cancer.
Now, just 2 years after the discovery from Carroll's team, 3 clinical trials are set to open that will test this new approach in people.From lab beginnings
Carroll's study was instrumental in understanding how the progesterone receptor works in breast cancer, and how it can act as a handbrake on cancer cells' growth. The team's results have now led to a possible new approach for stopping double positive breast cancer cells growing.
Normally, women whose breast cancer cells carry the oestrogen receptor (so-called ER positive) are treated with drugs that cut off oestrogen or directly block the oestrogen receptor. This will either be tamoxifen or aromatase inhibitors, depending on whether the woman is pre- or post-menopausal.
Dr Jason Carroll
But Carroll's results showed that treating mice with those oestrogen-blocking drugs and a dose of the hormone progesterone had an even bigger effect compared to the oestrogen-blocking drugs alone.
Progesterone changes the genes that oestrogen turns on and off by forcing the oestrogen receptor to sit in different positions in the genome, and according to Carroll this means the combined treatment offers a safety net.
"It's like a double blow," he says. "We cut off oestrogen, and as an insurance policy we use progesterone to pull the oestrogen receptor away from the genes that support cancer's growth."
This was the evidence that was needed to take the research into early clinical trials.Challenging beliefs
When the results were published, they caused quite a stir. Carroll says they challenged how people thought these different types of breast cancer worked at the time.
"For years there'd been a lot of confusion over whether progesterone encourages cancer to grow, and this has largely come from population studies looking into hormone replacement therapy (HRT)," he says
Some women choose to take HRT to ease symptoms caused by the menopause. There are different types, and the combined form contains a man-made version of progesterone called medroxyprogesterone acetate (or similar versions).
It's this combined form of HRT in particular that is linked to an increased risk of developing breast cancer.
"This led to the popular belief that progesterone encourages breast cancer to grow," says Carroll. "But it's not that simple. Different versions of man-made progesterone seem to have different effects on cells compared to the natural hormone.
"Plus we were trying to understand what role progesterone plays after a breast cancer has developed, rather than looking at how it affects risk of cancer beginning in the first place."Into the clinic
Just 6 months after the findings were published, Carroll was approached by Dr Richard Baird, a clinical trials specialist based at our Cambridge Centre, to discuss possible trials.
Because the drugs we want to test have been used by doctors for years for a variety of reasons, we know they are safe and what doses to use them at. Plus they have the benefit of being cheap.
– Dr Jason Carroll
"A clinical trial from Brazil showed that around 40% of women whose cancer had stopped responding to standard oestrogen-blocking therapies, including tamoxifen and anastrozole, still responded to a man-made progesterone called megestrol acetate," says Carroll.
Their idea was to try the combination of oestrogen-blocking drug and progesterone as the first therapy women receive. And setting up the trial was surprisingly simple.
"Because the drugs we want to test have been used by doctors for years for a variety of reasons, including in the treatment of late stage metastatic breast cancer, we know they are safe and what doses to use them at. Plus they have the benefit of being cheap," says Carroll.
The Pioneer trial is being led by Carroll and Baird, and will start enrolling women with early stage breast cancer in June 2017.
Women joining the trial will still get the gold standard of care treatment that all women with early breast cancer receive, but the team will test the combination in a gap that exists between diagnosis and surgery.
"What happens is there's normally a few weeks' wait between a women having a biopsy and then having surgery to remove her tumour.
"In our trial, we're going to ask women to take the combination of an oestrogen-blocking drug – in our case anastrozole – and the man-made progesterone (megestrol acetate) during this wait. Then we can study the biopsy sample and a sample of the tumour removed during surgery to see the effects of the combination treatment on the cancer cells."Not 1, but 3 trials
Carroll and Baird are focusing on post-menopausal women in their trial, but there are 2 other trials that have been set up in partnership that look at slightly different things.
One of the trials, led by Dr Carlo Palmieri at the University of Liverpool, is being funded by us. The approach is similar to that of Carroll and Baird, but Palmieri's trial will involve pre-menopausal women who will be given a combination of tamoxifen and man-made progesterone instead.
The third trial will be opening in Australia, testing a combination of aromatase inhibitors and natural progesterone in post-menopausal women.
If the trials show that the combination treatment is effective by studying tumour samples, the next steps would be extending the studies into larger trials so women are given the combination after surgery too, to see if it improves survival and doesn't cause any harms in the long-term.
Another interesting angle to the trials is finding out if adding progesterone to oestrogen-blocking drugs helps reduce the side effects of treatment.
"For the maximum effect, women should take oestrogen-blocking drugs for the recommended time period after surgery," says Carroll. "But unpleasant side effects mean many women stop their treatment early, and this increases the risk of their cancer returning.
"As part of this trial, we're also finding out if a lower dose of progesterone routinely used to alleviate menopausal symptoms works as well as the higher dose. This could make the side effects of hormone therapy more manageable and improve the fraction of women that stay on their standard treatments."
The clinical trials are only just opening, so we'll need to wait until they've got some results before knowing if this will benefit women with double positive breast cancer and could be made widely available.
But thanks to some excellent lab research by Carroll and his team, and our funding, the trials are up and running and we're another step closer to an answer.
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