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tkaysmiles
Posts: 8
Joined: Jun 2013

Hello, my mother is a survivor of estrogen positive cancer. She went through chemo and radiation and a lumpectomy 2 years ago. She is currently cancer free. What we are struggling with now is the aftermath of treatment. The drugs they have put her on are causing more problems then the original cancer or the chemo. She was put on all forms of the estrogen killing drug...sorry can't remember the names of them just that they sucked all her estrogen away. She did not react to them well at all and since has been taken off of them but not before damage was done I believe. I am hoping that maybe someone can give me some direction in how to help her. Since being put on those drugs she now suffers from extreme anxiety and depression. She has lost 25 pounds at least since ending treatment. She has become a recluse and rarely leaves her house. She can't work. She tells me she wishes cancer had won. That breaks my heart. I just want to help her and wondering if anyone has experienced any of this. She thinks she is crazy but every single anxiety drug and anti depressant hasn't helped at all. She has a constant shake to her and says her insides shake too. I don't know where to turn any more. It breaks my heart to see her this way it is not like her at all. Please if anyone can help I would greatly appreciate it!!!

Terri

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

You need to talk to her oncologist or primary.  They can best help you. Please send updates on her condotion.

I will put her on my prayer list.

Sandy

burcu123
Posts: 70
Joined: Jan 2013

Some anti estrogen medications may cause depression. She needs to talk to her oncologist. Lost that comes with breats cancer is huge. It is so understanble she is depressed.

She needs to seek treatment. a therpaist is the best place to start

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

Terri, 

I am so sorry to hear about your mom having so much trouble.  It must really hurt to hear those words from her. 

When I went through treatment, I was going through a really tough time in my life otherwise as well and I felt like your mom a little too.  But as time passed, one day it struck me that I was really glad to 'still be here'.  I hope your mom has that day soon too. 

I think a survivor support group would be great or do you think she would get on here and talk to us?  Sometimes it helps just to know the things you are thinking or going through are not that strange and you aren't alone.

Marty

tkaysmiles
Posts: 8
Joined: Jun 2013

Have talked to her Dr. Their response was to try another and then another. I loved MD Anderson and the care they gave her until it came to those drugs. They pushed them on her relentlessly when I wasn't around. Made her feel like if she didn't take them she would get her cancer back. Then finally said they have never seen such a reaction to this medication. She was NOT like this prior to taking it. She had depression issues years ago but it was always managageble. I fully believe that this medication messed with her hormones in such a way and now her body won't go back to normal. We live in a small area so there are no support groups. And she just feels like it is her and she is crazy. Was hoping people on the Tamoxofen (sorry for spelling) might have experienced the same thing. 

Pink Rose
Posts: 495
Joined: Nov 2012

I am very sorry that your Mother is in such bad shape.  You didn't mention if she has seen a therapist or psychiatrist.  If she hasn't, maybe that would help?  There has to be help out there for her.  You're a good daughter and I hope that you can get her the help that she needs.

Good luck, Rose

tkaysmiles
Posts: 8
Joined: Jun 2013

Yes she is seeing someone now for psych meds. But everything they try doesn't do anything to help. She was seeing a therapist too but didn't think it was helping so stopped due to financial reasons. She just recently went on Medicare and since she cant' work is always worried about money. Since she has tried all types of psych drugs with no help that is why I think it stems from the hormones and that estrogen sucking drug. Ever since she took that she has not been the same at all. She literally shakes constantly and says her insides are shakey too. Thank You all for responding too. I should have got on here sooner just thought everything would get better. It's been a hard 2 years really. 

jlharris's picture
jlharris
Posts: 48
Joined: Apr 2013

I am sorry that your Mom is going through this and you as well. Sometimes it's harder on the loved ones.

What about acupunture? Maybe this would help her, it certainly wouldn't hurt.

Jenifer

Rague
Posts: 3305
Joined: Aug 2009

You say her Dr. just keeps trying different meds - is this Dr a psychiatrist or her oncologist?  If it is just her oncologist then I'd try to get her in to see a psyciatrist who is very knowledgeable in dealing with PTSD (Post Tramatic Stress Disorder).  PTSD is very real and the sooner one is in treatment - the better the results.  PTSD is very real and does on only 'happen' to those who have been in war/terrorist situtations - any tramatic experience can trigger it.  (Hubby still deals with it from his childhood that was not DX'd until an adult.)

Has her Vitamin D level been checked?  Low D can definately mess with your emotions/energy.  (I deal with SAD [Seasonal Affective Disorder] so I have to take mega doses to keep level up - not as much in summer as I spend quite a bit of time outside but definately during the winter along with using my light box.)

How about her thyroid?  Hypothyroidism can mess you also.  Chemo will sometimes 'play' with the thyroid.  Depending where rads were done, they can also mess with thyroid.

Has diabetes been ruled out?

There are many issues that can cause the problems she is dealing with.  Could also be a combination of 2 or more.

Winyan - The Power Within

Susan

tkaysmiles
Posts: 8
Joined: Jun 2013

Her ocologist tried all of the estrogen sucking drugs until finally she agreed that my mom had the worst reaction she has ever seen to the drugs and agreed not to push them any longer. She has been seeing a psychiatrist through out the entire process as well who has tried different combinations of anti depressants, anxiety meds with no sucess at all. The shaking and uneasiness never goes away. She has hed thyroid issues but all tests indicate it is in the normal range so they won't touch it. This did not happen until they messed with her estrogen. Since then she has not been the same. That is why I am convinced it is those drugs and the after effects of them causing this. 

 

I have tried to discuss accupuncture with her too and it might be an option but it isnt' coverered by insurance and she is afraid she doesn't have the money. 

 

Has anyone ever gone on bio-identical estrogen after having estrogen positive cancer??? wondering if that is an option for her? 

June Bugs
Posts: 169
Joined: May 2013

I have no idea of what to try next for your Mother except maybe seek another opinion?  Have her looked at by another doctor?  If she can't afford it, could you help her or her other children, if she has some?

I feel so bad for her and for you. 

Hugs, June

tkaysmiles
Posts: 8
Joined: Jun 2013

That is what I am researching now. Anyone that might be able to help her. I can't imagine living the way she has for this long. It's really not that she can't afford it per se but that she is afraid about money because she isn't working. Thank you all for your responses. I am really all the support my mom has. I'm going to suggest she get on here too and talk to someone. I tried to find a local support group but apparently they disbanded last year. I just don't know if she will. I got her a few books to start reading to see if anything was similar but she hasn't done that either. I think she is resigned to this being her life and she will just waste away to nothing. I do make her get out daily and walk with me for 20-30 minutes. And I make sure she gets a good meal most days. I'll just keep trying. I know my mom is there somewhere. I just miss the person she was before all of this! 

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

 

I've been on Tamoxifen 9 mos but haven't seen side effects at all.  Everyone is different.  I always worry about what could be happening inside my body, courtesy of the drug!  I know you're worried, and I hope you can find help for your mom.  Linda

survivorbc09
Posts: 4378
Joined: Jun 2009

Have you talked to her doctors about a support group?  I know where I live, there are support groups for almost everything at all of the hospitals.  This is just so very sad to read how she is and I feel so sorry for you.  It's so obvious how hard you're trying to help her.  There has to be help somewhere by someone for her.  Contact the American Cancer Society possibly and see what they say.

Hugs, Jan

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

I agree 100% with Susan all that she has mention can be a big factor in your mothers condition... Please ask her Doctors to rule out all that was mentioned, Post Tramatic Stress Disorder, Vitamin D level, Hypothyroidism which I have, so I know that this can cause these symptoms if not treated. Diabetes, Hypoglycemia (low blood sugar) can also cause these symptoms.  You have been and still are a wonderful daughter to your mother... She is lucky to have you.  Who you are is a reflection of the women that raised you.  God Bless you both!... Kathy

tkaysmiles
Posts: 8
Joined: Jun 2013

I have called our local hospital and the support group apparently disbanded a year or so ago. I'm sure they have them in Houston but honestly it is hard getting her to drive the 2 minutes to my house for dinner let alone 45 to Houston. She would also just spend the entire time worrying about everything and end up not going. That is one reason I am reaching out on line. If I can find some help or answers then I can pass it on to her. I am her only support here. It has not been easy that is for sure. I'm not giving up though!! Thank You!

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I don't know how I can help, but, I am here for you.  Maybe by posting, it will help you out.  I am sending lots of prayers, cyber hugs and support to you for your Mom.

Megan

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I have battled mental illness since I was a child. I was far worse than your mother is right  now with the severe anxiety, severe, depression, agoraphobia, and bipolar disorder. Most psychiactric medicines need to time to start working. I found that pills alone don't always work. A good therapist who can work on ways to change the thoughts, a good psychaitrist to handle the meds, and a willingness to change all the negative thoughts. It is A LOT of work. Constantly switching meds can't be a good thing for the system. Like I said, they need time. I found that medicines can help, but the thought process is still there. That is where a good counselor would come in handy.

I realize she is on Medicare and only allowed a certain number of therapist visits, but there are some county run mental health hospitals and clinics that will pro rate the bills.

It is a long hard road that requires so much work to come out of where she is. 

There is something that says insanity is doing the same things but expecting different results. I know how hard it is. For over a year, I bathed about once a month, only left the apt. about once a month to go to the local food pantry, I got fired from my job because I couldn't call them or my doctor for help. I lost a lot of weight. Leaving the house wsa so overwhelming I couldn't take it. All the colors and sounds once I left the apt. only increased my anxiety. I fianlly came out of it, but I needed a lot of work physically through medications, emotionally and pyschologically needed tremendous work to change how I was thinking...substituting positive thoughs for the negative. My mother enabled me. She should have had me committed some how but then I really wasn't a danger to myself.

I live with terrible pain everyday. Some times I think I will go crazy from it. Sometimes it is better, sometimes worse. I also have a lot of other health issues besides the mental. I constantly have to work on not going back to the crazy I lived in before. It is damn hard work.

 

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

I have been struggling with depression and anxiety since being on AI's.  I had to try a lot of different anti-depressants until I found a combination that is working (mostly) for me.  Don't let your mom give up.  A good therapist and psychiatric care can make a big difference in her life.  It is really hard and painful.  Thank you for being such a loving daughter.  It can't be easy for you. xoxoxoxo Lynn

tkaysmiles
Posts: 8
Joined: Jun 2013

Thank You all for your responses. They actually made me cry. My mom is seeing a counselor on Thursday. She is very negative about it and doesn't think it will help. I am pushing her to go with an open mind and at least use the experience to make a plan and be proactive with her situation. Tried getting her to walk with me last night. she lasted 15 very slow minutes. Even getting in our garden and picking tomatoes freaked her out. It's just heartbreaking to me. Going to suggest the Post Traumatic Stress disorder area with her too. I know that has to be part of it. but just the screwing with all her hormones did not help her at all either. 

Cheryl S
Posts: 82
Joined: Jun 2013

This is very sad and I am so very sorry that you and your mom are going through this.  I will be praying for her.

 

taylor manny
Posts: 114
Joined: May 2013

Hoping the counselor might help your mom.  It is always worth a try. 

 

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Your post rips at my heart.  You're trying so hard to help your Mom and she just doesn't seem to want it.  I certainly pray that something and or someone will be able to reach her.

I am just so very sorry,

Kylez

tkaysmiles
Posts: 8
Joined: Jun 2013

It's not that she doesn't want the help. It's she thinks that there is NO help. she thinks she is crazy and that nothing will help her. This was a worse week then others too. She did manage to go to couselor who suggested she excercise. No one seems to be able to help put her in the right direction or give her hope that things can change. I still have hope though!!

Lynn Smith
Posts: 1265
Joined: Mar 2011

I haven't had any side effects but now that you've mentioned shaking I have started that.Just my hands.I had a bad bout with bronchitis that lingered for months and alot of problems with it.Couldn't go in stores etc for fears of running into others who might be sick and then I get worse.So I've tributed my hand shakes from that and haven't from the tamoxifin since I don't remember the shakes quite like the ones I have now.Could be a delayed side effects and with my body being so run down for months maybe I do have sides effects from the tamox.

Oh and now after the bronchitis, I have allergies with lots of things.Eyes water, nose runs and I sneeze.  

Lynn Smith 

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Never give up as there is always hope!  I am praying for her and for you!

 

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Praying and hoping for your Mother!

peterz54's picture
peterz54
Posts: 230
Joined: Feb 2012

Recommend going here

http://cancergrace.org/

and posting your mom's issues and get an opinion from Dr West or one of his staff.   Dr West was responsive and helpful with my wife's cancer issues.   They now have a Breast Cancer section.

 

Also,  diet can play a big role in survival and recurrence although there is still much to learn

I have found Dr Greger's site to be useful.   Here is one such short video to give you a sense...

http://nutritionfacts.org/video/flaxseeds-breast-cancer-survival-epidemiological-evidence/

Use his search feature and search on breast cancer and there is much much more.

 

Also, Carole Baggerly, a breast cancer suvivior, has started a non-profit a few years ago to bring to the pubic the lastest research on Vitamin D's impact on breast and other cancers.

If your mother stay's indoors she is very likely deficient in vitamin D, and vitamin D deficiency is correlated wth increased odd of many illnesses including cancer and cancer recurrence.

See the video section here

http://www.grassrootshealth.net/index.php/videos

there are several discussion with researchers on Vitamin D as it relates to breast cancer.   be sure to see the one with Dr JoEllen Welsh.

Many of the researcher which Carole Baggerly interacts recommend to test and get above 30 ng/ml at a minimum.   If I recall correccly the average American is at about 22 ng/ml.

 

getting outside into natural sunlight may affect her seratonin levels which can affect depression.   being outdoors and walking would be great for her.    But all easier said that done.

 

good luck

 

 

 

 

 

 

 

 

 

JJDS
Posts: 259
Joined: Apr 2013

I wish I had an answer for what would help your Mom.

I am praying that someone or something will help her!

JJ

Kobias
Posts: 115
Joined: Jun 2013

How is your Mom doing?  Any change? She's in all of our prayers.

Kathy

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

She doesnt sound like a typical person with PTSD. I think you re on the money with the fluctuations in the hormones causing the anxiety and depression. It sounds like she has a very bad reaction.

I take lexapro because the tamoxifen makes me anxious and depressed. I realized I need it when it was changd to generic and it didnt work the same way. I was having anxiety attacks. i wonder if your mom got the name brand of these meds or generic? the generic does not work for me, and this is a common side effect

Lynne P
Posts: 165
Joined: May 2013

I agree with carkris about that sometimes the generic of drugs don't work.  I have found this true for me with certain drugs.  Please do look into this. 

 

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Hoping there is some improvement with your Mother.  We are all praying for her!

Lynne P
Posts: 165
Joined: May 2013

Checking again for a possible update.  I hope your Mother is doing better. 

Bearing burden
Posts: 2
Joined: Aug 2013

You are a good daughter and I know that you love your mother.  I am concerned about you too.  You may also need someone to talk to for your own sake.  You are being the care-giver and you are living under a huge burden that at times, I am sure, feels crushing.  I know, because beside my having breast cancer, my husband has also had cancer.  I have been on both sides of the situation and I know that you need someone to help you as you are helping her.  The estorgen supressing drugs are hard on us and each of us has different side effects.  I get depressed about how they have changed my life and so I understand your mom feeling hopeless.  It is a hard thing to understand and I hope you can find someone to talk it over with - it will make all the difference if someone can help bear your burden.  

Mary

 

 

IE_Hope's picture
IE_Hope
Posts: 42
Joined: May 2013

Terri, sorry to hear what your mom is going through.   I recently had a mastectomy and will find out about Chemo tomorrow and I went through( still fighting it) depression.  I was fortunate my daughter is the one that brought it up to my Dr. and they put me on anti-depressant and I now feel so much better and doing things for myself.  At first I was upset with my daughter but now I am very thankful she did.

Hang in there and have a talk with her Dr

 

De

 

 

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