Questions about Hormone Blockers: Side Effects?

Posted by kathysway @kathysway, Wed, Jul 24 8:42am

alright half way through my Radiation treatments and its not bad at all now I’d like to ask for information on hormone blockers I’m 61 years old and most of my spine and hips have arthritis now I have been told by the Dr. about joint pain from these medicines so I thought I would ask for some info from the warriors that have to take these medicines first hand I know not everyone has side affects and some have I just want to be informed on the side affects thank so very much all of you for being here.

@kathysway, It's wonderful to hear that your radiation treatments are going well. Everyone has different experiences with the various hormone blockers. On this site if you go to "Groups" and then to "Breast Cancer", you'll find many discussions about those various experiences, including my side effects from Anastozole. There are discussions about Letrozole, Tamoxifen and Anastrozole. Keep in mind that not everyone has negative side effects from these drugs. People who post here do. Best of luck to you, and just know that these discussion groups a very comforting and helpful.

REPLY

I'm new to treatment, only having begun in June. I'm taking Letrozole. I haven't noticed any side effects yet. I have mets to my bones so they also have me receiving Xgeva shots every 3 months. I'm 57 and have had the usual aches and pains of joints that come with age but so far so good. We're all here to help as much as we can.

REPLY

Kathysway, congratulations on your half way mark! I’m hoping you can continue with little side effects. My experience was similar to yours at my half way point, but as the radiation treatments finished up, the more tired and run down I got. By the end, I was still ‘ok’ but needed sleep really badly. For me as things progressed the emotional side of cancer became more of a challenge. I was in radiation treatment just a year ago. I was 64 when diagnosed, and as I progressed through treatment, the emotional side of having a deadly disease really got to me. It sort of hit me in the face that I’m not young, healthy, and carefree any more. I craved solitude and simplicity. I didn’t have much emotional support, most people see how ‘well’ you are doing physically, and they don’t even think about what you are feeling emotionally. I tried to be my normal cheerful self, but craved solitude to grieve the health I had taken for granted, and likely will never have that health again. Few people understand the emotional toll this dreadful disease takes, or the emotional side of any serious illness. I’m so grateful for this group and the opportunity to connect with others! Thank you to all of you!!!

Liked by jeannie53, ibcmona14

REPLY

@kathysway, I changed the title of your discussion to be specific to your question. @sparklegram is right. There are several discussions currently in the Breast Cancer group focused on hormone blockers (aromatase inhibitors, called AIs and selective estrogen receptor modulators, called SERMs).
There are 3 AIs
– Arimidex (chemical name: anastrozole)
– Aromasin (chemical name: exemestane)
– Femara (chemical name: letrozole)

There are three SERMs:
– tamoxifen in pill form (also called tamoxifen citrate; brand name: Nolvadex) and in liquid form (brand name: Soltamox)
– Evista (chemical name: raloxifene)
– Fareston (chemical name: toremifene)

Here is a list of related discussions in the Breast Cancer group:
– Anastrozole…has anyone had an increase in glucose or cholesterol https://connect.mayoclinic.org/discussion/anastrozole-has-anyone-had-an-increase-in-glucose-or-cholesterol/
– Concerned about the side effects of anastrozole https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/
– Completed 5 years of anastrozole. Withdrawal symptoms? Side effects? https://connect.mayoclinic.org/discussion/stopping-anastrozole-after-5-years-withdrawal-symptoms/
– Can anyone speak to the pros/cons of arimidex vs. tamoxifen? https://connect.mayoclinic.org/discussion/can-anyone-speak-to-the-proscons-of-arimidex-vs-tomoxifen-ive-been-on/
– Cognitive impairment, forgetfulness with hormone blockers https://connect.mayoclinic.org/discussion/cognitive-impairment-forgetfulness-with-hormone-blockers/
– Timing of HRT, anastrozole – taking day or night? https://connect.mayoclinic.org/discussion/timing-of-hrt-anastrozole-taking-day-or-night/
– Letrozole https://connect.mayoclinic.org/discussion/letrozole/
– Stage 1 Invasive Ductal Carcinoma: Exemestane and side affects https://connect.mayoclinic.org/discussion/exemestane-and-side-affects/
– Aromatase Inhihibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/
– What problems have you had with Tamoxifen?
– Tamoxifen 10mg vs 20mg https://connect.mayoclinic.org/discussion/tamoxifen-10mg-vs-20mg/

Kathy, this is a crazy list of discussions. I provide them only as an inventory of the support you have here on Connect. As Sparklegram says, not everyone gets side effects. Women who don't have side effects tend not to write on the forum as they don't need support. I hope that you are one of them. As you get ready to move to a new treatment after radiation, what questions do you have? What questions would you like to prepare for your oncologist?

REPLY
@lisman1408

Kathysway, congratulations on your half way mark! I’m hoping you can continue with little side effects. My experience was similar to yours at my half way point, but as the radiation treatments finished up, the more tired and run down I got. By the end, I was still ‘ok’ but needed sleep really badly. For me as things progressed the emotional side of cancer became more of a challenge. I was in radiation treatment just a year ago. I was 64 when diagnosed, and as I progressed through treatment, the emotional side of having a deadly disease really got to me. It sort of hit me in the face that I’m not young, healthy, and carefree any more. I craved solitude and simplicity. I didn’t have much emotional support, most people see how ‘well’ you are doing physically, and they don’t even think about what you are feeling emotionally. I tried to be my normal cheerful self, but craved solitude to grieve the health I had taken for granted, and likely will never have that health again. Few people understand the emotional toll this dreadful disease takes, or the emotional side of any serious illness. I’m so grateful for this group and the opportunity to connect with others! Thank you to all of you!!!

Jump to this post

thank you for your reply I haven't cried or really expressed anything since being diagnosed I've just been doing everything that the Dr.treatment plan but yes I understand wanting to be alone I have my husband here and my adult children but I still feel alone I refuse to let this get to me I've had a very hard life growing up and after it has never been easy for me but I have a very strong faith and I do think that life is test after test and this to shall past and whatever the end results are that's what is meant to be I understand people dont think the same way I do and thats fine but I will continue to do as I've always done and do good for others as I can and enjoy my life with love ones as much as I can if I can leave memories and put smiles on faces then thats alll I can do i'll never give up and I get that a lot about how great I look and I must be doing great I think it makes them feel better to say things like that and I understand no one really knows what to say what gets me is when they say call if you need anything im the person thats there when they need things so I dont ask and wont over all Im still very grateful for the 61 years that I have lived so far and pray to see many more and I will pray for anyone an everyone as I do and Thank all of you for being here for me.

REPLY
@mom23boys

I'm new to treatment, only having begun in June. I'm taking Letrozole. I haven't noticed any side effects yet. I have mets to my bones so they also have me receiving Xgeva shots every 3 months. I'm 57 and have had the usual aches and pains of joints that come with age but so far so good. We're all here to help as much as we can.

Jump to this post

thank you your all Blessing to me

REPLY
@kathysway

thank you for your reply I haven't cried or really expressed anything since being diagnosed I've just been doing everything that the Dr.treatment plan but yes I understand wanting to be alone I have my husband here and my adult children but I still feel alone I refuse to let this get to me I've had a very hard life growing up and after it has never been easy for me but I have a very strong faith and I do think that life is test after test and this to shall past and whatever the end results are that's what is meant to be I understand people dont think the same way I do and thats fine but I will continue to do as I've always done and do good for others as I can and enjoy my life with love ones as much as I can if I can leave memories and put smiles on faces then thats alll I can do i'll never give up and I get that a lot about how great I look and I must be doing great I think it makes them feel better to say things like that and I understand no one really knows what to say what gets me is when they say call if you need anything im the person thats there when they need things so I dont ask and wont over all Im still very grateful for the 61 years that I have lived so far and pray to see many more and I will pray for anyone an everyone as I do and Thank all of you for being here for me.

Jump to this post

@kathysway Kathy, I also have the same feelings and what I have found is that going to a cancer support group – if any in your area – it is really helpful as even with family and friends' support, being with others going through the same thing makes a difference. In my group yesterday, we were talking about just this same subject. All the best to you.

REPLY

thank you for your reply ive tried to find one but havent yet im meettng with a social worker at the dr office in hopes of finding one

Liked by trixie1313

REPLY
@kathysway

thank you for your reply ive tried to find one but havent yet im meettng with a social worker at the dr office in hopes of finding one

Jump to this post

@kathysway Maybe check with the American Cancer Society. My medical facility has a breast cancer support group as well as a cancer group. I tried the breast cancer one, but found the regular cancer group fit my needs best. Another medical facility in our area also has support groups as well.

REPLY
@mom23boys

I'm new to treatment, only having begun in June. I'm taking Letrozole. I haven't noticed any side effects yet. I have mets to my bones so they also have me receiving Xgeva shots every 3 months. I'm 57 and have had the usual aches and pains of joints that come with age but so far so good. We're all here to help as much as we can.

Jump to this post

I am so sorry you have Mets to the bones!! How was that diagnosed? I have a fear of that happening to me! I will pray you are feeling better !!!

REPLY
@farmgirl1556

I am so sorry you have Mets to the bones!! How was that diagnosed? I have a fear of that happening to me! I will pray you are feeling better !!!

Jump to this post

Good morning fg. My bone mets were found when they did a bone scan. First identified as possibly normal stress fracture in my left leg as I had a pretty severe fall with my dog (on ice) a few yrs. back. Also similar looking injury to my upper arm on the scan. They then did a PET Scan to look into areas of interest along my spine and such and they "lit up" on the film as they do when it's cancer. I honestly thought all along they were just old injuries and wrote off the aches. Now I have to be careful what I do that I don't take a fall. That I guess is the reason to get Xgeva shots with the Letrozole since Letrozole I guess weakens the bones. I'm still learning all of this stuff so bare with me. Thanks for your well wishes. I'm doing pretty good and can only hope it stays this way for a long while…..and you as well.

REPLY
@mom23boys

Good morning fg. My bone mets were found when they did a bone scan. First identified as possibly normal stress fracture in my left leg as I had a pretty severe fall with my dog (on ice) a few yrs. back. Also similar looking injury to my upper arm on the scan. They then did a PET Scan to look into areas of interest along my spine and such and they "lit up" on the film as they do when it's cancer. I honestly thought all along they were just old injuries and wrote off the aches. Now I have to be careful what I do that I don't take a fall. That I guess is the reason to get Xgeva shots with the Letrozole since Letrozole I guess weakens the bones. I'm still learning all of this stuff so bare with me. Thanks for your well wishes. I'm doing pretty good and can only hope it stays this way for a long while…..and you as well.

Jump to this post

@mom23boys, You may also be interested in these discussions on Connect.
– Metastatic breast cancer, in bones: Trouble eating https://connect.mayoclinic.org/discussion/medistatic-breast-cancer-in-bones/
– Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

Liked by mom23boys

REPLY

Very glad to have found this group. Stage2, diagnosed in 2017. two surgeries (partial mastectomy and then symmetry surgery) and 6 weeks radiation in 2018. Was on Letrozole – drove me crazy with the SE's (bone, muscle and joint pain; insomnia; hot flashes; night sweats; depression; no libido; extreme fatigue.) Changed to Anastrozole – having the same SE's. I did take a vacation for 6 wks from the Letrozole with oncologist's permission and boy did I feel better!! I think it's a balance. We know that in the clinical trials that taking the AI for 5 years lessens the recurrence rate. And of course it matters what type of tumor you had. But quality of life is also important, and the healthier we can be, the more we participate in life. I'm trying to hang on to the three year mark, at least (I'm at two years now), but it's really hard to feel yucky all the time. Thank you for listening.

REPLY

ljo, have you asked your oncologist about lowering your dosage? Perhaps a lower dosage could be a good compromise.

REPLY

Kathysway, sorry you find yourself in this situation. Having taken several of these drugs and having read extensively about the side effects and the experiences of others, it seems there is no rule of thumb regarding symptoms.. Every person reacts (or does not) differently and every drug can affect you in surprisingly different ways. My approach was to give one drug a try and see what happens. If it's no good, on to the next one. There are 5 that a post-menopausal woman may take, but do consult your doctor. If all are intolerable, then at least you know you gave the drugs a shot. One of them did prove to be acceptable to me after some miserable failures that produced no lasting effects. Good luck to you.

REPLY
Please login or register to post a reply.