Why was I stronger DURING treatment than I am now?
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Redheaded1 - Interesting. I would like to try something else. I was on Tamoxifen for a few years and it also left me feeling like a brittle old lady. Perhaps I should switch again. I had a few weeks off from drugs when I had my bilateral MX and it felt like a friggin' holiday.
Also there are a few reasons why I'm on Letrazol. But since have no memory any more so I can't recall all the details. All I know is that my Onc said there was a study saying that switching at the 2.5 year point from Tamoxifen to something else is more effective than staying on Tamoxifen the whole time. I think that applies mostly to post menopausal ladies - but I'd have to go through my notes to be sure.
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janet, that is exactly what the study said. Tamoxifen combined with an AI is more effective than tamoxifin alone. ..Usually the AI drugs are only given to post menopausal women. I had a hysterectomy at 46 so it wasn't an issue.
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This group is a life saver! I am so glad I found you all! I've been on a downhill ride since my last treatment. Now I have a throat doctor for laryngitis caused by acid reflux, my bones are hurting me, my blood pressure is up, I have to go to Lympedema therapy every week day, I have CTs and bone scans on Friday, and I still have to make a 40 hour week, make sure my kids do what they are supposed to.... I have no time to rest. Speaking of kids, my 14 year old got was scaring young kids on a haunted hay ride. He got so excited he just couldn't stop. The tires found both of his feet. Now he REALLY looks like a zombie!!!!! Seriously, though. I just turned 40. I was looking forward to a brand new life after my divorce, then bam! And I just can't seem to get back up. I am also taking Tamoxifin, and after reading your posts, I wonder how much of what I'm feeling is attributed to that.
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Hello Ladies
Good to see the is page active again. I took a break from it too, but I am glad to catch up on what is happening with everyone. Sorry to hear about the setbacks. That sucks..
I am a bit on a roller coaster these days. The good: I have scheduled my exchange surgery for December 3rd, cannot wait. Also good, I started acupuncture to help with the neuropathy in my hands and feet. I am hoping that helps.
The bad: my college roommate was diagnosed in September, my cousin was diagnosed last week, and my sister is having her second biopsy tomorrow. I feel like it is not going to end with a negative result. She is obviously freaking out & so am I.
The husband and I have been arguing a lot lately. He feels neglected & I feel exhausted. We are a great pair.
Hope you all have a chance to feel well.
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Hi, everyone. It's good to "see" you all both new people and veterans of this thread.
Janet, I'll let you know how the therapy goes. Frankly, since I felt this way when my ovaries were removed, and the only thing that helped was estrogen, I have little faith in a talking cure. Just one more damn thing to do. Regarding Tamoxifen and AI's, my MO said the same as yours - 2-3yrs on Tamoxifen then switch to "something else." The last time I saw him, he was reconsidering switching me off Tamoxifen because I'd just gotten diagnosed with osteopenia. However, if there's a chance I won't be so damn depressed on an AI, I want to try it. I totally sympathize with everybody who said they feel like they're 104. I think I aged 20 years during the months of surgery, chemo and rads.
JJ, I hope your pneumonia clears up soon. I have to wonder if rads are why a left bundle branch block showed up on my EKG a year ago, and I ended up with pneumonia last winter. I enjoyed getting my extra hour of sleep in this weekend too.
Smart, I'm so sorry about your roommate and cousin. Fingers crossed for your sister. Does this never end? I'm glad you have your exchange scheduled. I've got nipple construction and revision scheduled for January. I think the neuropathy in my fingers is getting worse. Let me know how you make out with the acupuncture. I'm getting acupuncture for the TMJ that I woke up with after my LD flap surgery a year ago. Maybe I'll have her work on the neuropathy too. I've got so many issues that I have to pick and choose which ones I actually make appointments for.
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2 tabbies---I discovered my Arimidex was causing me to feel depressed....big time.
Smartasssmurf--you have been through a storm t he past 2 years......so what you are both feeling is probably appropriate. It will get better.....just try to make a little cuddle time and you will both feel better.....promise....
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Smartsmurf - My partner is feeling neglected too. My mom told me that I should just go and pat him on the bum for no reason. I try - but mostly I want to punch him in the head. I feel like I try so hard not to complain, and crawl into bed, and cry - and I forget that sometimes boys need appause just because they've done some dishes
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Smartass Smurf - I'm sorry doesn't help, does it. That is catastrophic! I imagine that you are doing the best you can for yourself and those around you and your husband wants a normal relationship. I'm positive mine doesn't understand. And with so many people leaning on you, the weight must be almost unbearable. I say almost because it seems that all of us on this site keep standing up for what ever reason.
One step at a time towards healing seems to mean, oh, there's another problem that has to be dealt with. We are all strong because we have to be. This group may be all some of us have when the rest of the world wears us down! I wish you all the best! For what that is worth....
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Janet...I'm laughing at your comment because it's so true. My DH is having a hard time with me being down and out this long....and so am I.
I seen my BS today for the results of my mammo and US. It came back Birads 3for my good breast so I will do another mammo and an MRI in 4 months ...I have some tissue thickening that is looking odd. I also had a cyst drained (it was 7 cm x 4 cm x 2 cm)...she thinks it will come back so I see her again in 3 wks. I just want to be "done" and all of this is messing with my head. I'm just friggen tired. After my appt I went back to work with my gauze bandaged boob and thought why am I bloody at work? I survived the past year to sit at a job that makes me feel dead. I am hoping I pop out of this funk soon. We need my income and with 19 yrs there I don't have the energy to start looking elsewhere. I think maybe just everything is bugging me. A year ago...I thought my life was normal...
Smart - sending you a hug...know we are here for you.
It seems everyone in this group is struggling (probably why we are online and on this great site). I'm glad to read your posts...it makes me feel so not quite alone ...
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Redhead, I'm hoping one of the AI's won't cause depression for me as much as Tamoxifen has. I'm sorry you've had the same problem with Arimadex. There just doesn't seem to be a good answer.
JJ, what does Birads mean? I'm so sorry you're having these stupid issues. That's the reason I went with the BMX. I don't know if it was the right decision, but at least it spared me more mammograms, ultrasounds, MRIs, and biopsies. You sound exactly like me about your job. After going through all this cancer crap, why am I dragging my butt to a job that I don't give a rip about anymore? They paycheck and the health insurance, that's why. If I have no known large medical expenses on the horizon when I hit 60, I'm bailing.
My husband must feel neglected too. I have to say, he's been a good sport about our non-existent sex life. I wouldn't blame him for feeling neglected their, but my functioning in that department is toast. I read about topical lidocaine helping with the pain. I'm going to ask my GYN. DH has also been a little more patient on other things lately. I have no idea why. I wonder if he complained to somebody, and they read him the riot act or something.
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I have had a cold that may have morphed into a sinus infection and/or walking pneumonia. I'm going to see ENT ASAP. I post this here because I think since chemo my immune system is much weaker. Anyone else seeing this in their lives?
Hugs,
Peggy
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YES, Peggy! I was one of those lucky people who never got sick. Even if everyone around me was coughing and sneezing away. Nothing I did or didn't do, I was just blessed with a really good immune system. But all that changed since chemo. Now I get everything that's going around. So aggravating!!
Last time I had blood work done, the white cells were still below normal, 2+ years after chemo.
I have to be much more vigilant about washing hands, sanitizer, etc. now and I get a flu shot every year, something I never bothered with before.
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Hello All, no pressure, but ....
We are interested in hearing your experiences on issues related to your diagnosis and/or treatment,such as sexual matters, weight gain/loss, chemo brain/chemo fog, bone and heart health, exercise and nutrition issues, menopausal concerns, lymphedema, infertility, neuropathy, joint pain, skin/hair changes, relationship changes, work and career hurdles, and emotional issues including fear of recurrence. Please don't feel that you need to address each of these issues. We are listing these as suggestions. Your stories will complement a new, upcoming section on the main Breastcancer.org site on Survivorship issues.
Some things to think about for your story: Have you gained a new perspective on this other side of treatment? What life lessons have you learned? What advice would you give your newly-diagnosed self or other person just starting the journey? How does your "old" self compare to your "new" self? Is there a difference? What impact has your breast cancer diagnosis made on your life? If you've become a Breast Cancer Advocate, what is your mission and how are you fulfilling it?
If you're willing to share your perspective of your life after diagnosis and treatment, we'd love to hear from you! Please send your story via PM to the Mods along with a picture of yourself or something that represents you, and a note about how long since you've been diagnosed. Seeing these stories will surely inspire our new members, along with members just going through treatment now, to see that you CAN get through treatment and get to a new normal on the other side.
Your story will be included with the other Members Stories photos on the main site (http://www.breastcancer.org/community/acknowledgin...), in our December Newsletter and may also be used in part throughout the website and/or in fundraising or event materials.
Thank you for considering!
--The Mods
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Peggy...I am still recovering from pneumonia. I've been sick now for 5 wks. I really think your body trudges through treatment then freaks out afterwards. I was never sick before all of this. Going to work has been a struggle...I just want a date with my pillow and the couch.
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Peggy, I've gotten the flu 2 years running after not catching it for decades. One time it progressed to pneumonia which I'd never had before. Of course, I also have lymphoma which impacts my immune system. But I was diagnosed with that in 2009, and it's only since my treatment for breast cancer that I've had these issues. I hope you and JJ are both feeling better soon.
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Peggy, my blood work was low on white and red blood cells for about a year after finishing chemo. It seemed like one or the other would drop out of normal at every blood test. My last test in September, they were finally both in the normal range. I haven't gotten a lot of illnesses, but I am also washing and sanitizing my hands after any public places.
JJ, sorry you are having to deal with cysts and other problems. That sucks. I was worried about that if I chose not to do a BMX. It wasn't the only reason I did a bmx after my first surgery did not have clear margins, but it certainly was a large part. I am not sure I would have been strong enough to go through what you are going through. Stay brave and strong if you can, if you need support, someone is always out here.
Janet, your boys need applause comment made me laugh. That is a true fact. It is hard sometimes, but I need to remember a little applause now & then might help neglected feelings.
Starsong, thanks for the comments. You are right on with how consuming this all is. When I recite which appointments I have coming up or things I need to schedule, I can see my buddy's eyes glaze over. I am trying to prioritize...I just want all of this over.
2tabbies, I was worried about the flap not matching because of radiation. I still have a pretty good radiation tan. I ended up not doing the flap, but how I would feel about the different skin was a consideration for me. I also feel my job is somewhat pointless, which is exhausting. I wish I could retire...but I am only 43. I don't really want to work, just want money and health insurance. I need to find a new job. The current one is still somewhat unbearable & now the expectations continue to increase. I refuse to fight like hell for my life for 2 years only to have no life because of work. I hoping to get my resume together so I can start sending them out after my exchange surgery. Those jerks are definitely paying for my new boobs!
In other updates, I do think the acupuncture has helped. Helped my feet more than hands I think, but that is ok. Next week I am in St. Louis for a week of training. Glad to work some 8 hour days, instead of the 12-15 I am doing right now.
Hope you all enjoy this Veteran's day. If you have service people in your family, thank you for their sacrifice, and yours too as a member of their family.
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I woke up this morning with the fastest sinus infection I've ever had and recently, my heart has decided it doesn't want to cooperate. They had me take a break from Lymphedema therapy to deal with it. Bless you all and hopefully, one day, things will get better!
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starsong, I hope you don't have the crud I got 3 weeks ago---it is st ill here and I feel like I am going to cough up a lung....It was sinus type congestion for the first week, then went to my chest.....now it feels like my sinuses are tickly again.....And I have another friend in Colorado and she has it too....
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I'm seriously thinking of going off the Tamoxifen for a bit. Between the SE and the pneumonia I'm just done with feeling so crappy like all of the friggen time. Has anyone else ever "taken a break"? I'm also really grumpy which is causing a lot of friction (and not the good kind!) with my DH.
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I have been on break since August. My bone density test was not positive and other blood work shows serious vitamin D deficit....I actually finally felt normal by end of September to early October and then.. I have pneumonia, enlarged heart and a mass in left "breast"? WTF. Life is a struggle.
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JJ, when I got to the point where I could not tolerate tamoxifen any longer, the MO said I could quit that very day. She ordered anastrazole for me to try instead, but said it was perfectly ok to take a 2-3 week break in between. I may or may not have stretched that out to about a month. lol
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my doctor is telling my side effects are from the Lupron, not the tamoxifen. I just finished up radiation, and was looking forward to feeling better. But I have low level pain in my hands and feet. MO says basically it's a necessary evil to prevent recurrence. I'm forty with two small kids..one only 3 years old. I can't feel 80! So depressing..
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Thanks everyone...I just can't stand feeling like this and trying to cope with the SE's plus daily stresses especially with the holidays coming up. DH is driving me nuts and I feel like I have permanent PMS. My DD was so upset when I mentioned taking a break from tamoxifen. She is 27 and recently voiced how afraid she was of losing me. I go back and see my BS on the 24th...I'm hoping she might offer some insight...ugh!!!!! For a while things were going so well....I think the pneumonia dragging on this long has just pushed me to the edge. I was the one that NEVER got sick...
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Smart, good to hear from you. I hope you can find a job you like better when you start looking. I'm older than you - 58. I just feel too tired to even look for something else. Maybe that's the depression and cancer fatigue talking. I don't know, but I feel like the ship has sailed on my "career," and it's just too late. At least I'm not working long hours like you. My job isn't awful. It's just boring a lot of the time, and as I might have mentioned, provides no sense of accomplishment. So I'm trying to hang on until I'm 60 and hope that just my husband's insurance will be enough coverage at that point. Thanks for the input on acupuncture. It hasn't helped my TMJ so far. I'll ask her about the neuropathy the next time I go in.
Starsong, Redhead, and JJ, and any of the rest of you who are sick, I hope you feel better soon.
I had my 6 month visit with my MO yesterday. (Yesterday was packed with appointments - the MO, GYN and therapist.) I told him I was depressed and thought it was at least partly due to Tamoxifen. He agreed to let me try Femara. He only agreed to that because in my earlier appointment with my GYN, she put me on Fosamax for my osteopenia. (Yay. One more pill to take.) Anyway, I hope getting off Tamoxifen helps my mental state without giving me any new crappy side effects. Redhead, I see you took Femara then went back to Arimidex. Did you have problems with the Femara? I read where it works better at preventing ILC recurrences than Tamoxifen which was another reason I was interested in giving it a try.
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Yes 2 tabbies, I only lasted 4 days on Femara. I felt like I was 100 years old. I am having similar problems with the Arimidex but it took almost a year and a half before I started with what I would call real side effects (of course I didn't realize m y depression and trigger temper were drug related0)) When I tried the Femara, the MO had determined my elevated cholesterol was from the ARIMIDEX. I did a 2 week "wash out" before going back on the Arimidex. Still not sure if the Femara didn't just hang on and make me more sensitive to the SE (Femara is a larger dose than Arimidex-- Femara 2.5 and Arimidex is 1 mg). Im having lots of leg pain and foot pain. depressed, lack motivation and get angry at little things..... when I did a 2 week break, I was singing and humming all the time......and I kne w then the drug was doing a number on me.
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Redhead, depression and "trigger temper" as you put it are what I have on Tamoxifen. I'm hoping for better on Femara. We'll see. I still have most of a prescription of Tamoxifen, and I'm going to finish it. I hate having to dispose of medications. Plus, both Femara and Fosamax can cause joint pain. I don't want to start them both at the same time because I if I get that side effect, I want to know where to lay the blame. Such fun.
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Having a bit of a hard time at present......why are so many other people soo toxic? I said I needed a break from some voluntary work and needed space, giving over a month´s notice, but this was not respected,and one person in particular kept on making demands on me adn would not take no, demanding I explain myself etc etc. I then finally got quite tetchy, and now am being sent loads of messages saying I am clearly crazy, and that I am inadequate that I cannot just respond to what they need from me and that they were told by many people I am crazy and unstable etc ttc......................all this because I am trying to follow an emotionally health path and cannot deal with someone who needs replies to things within hours and will hassle and hassle to get it............I know in my head I am right but this total b...h is pushing buttons emotionally......why is it so hard to follow a healthy route?
Another friend asked me if she had upset me and I said yes, and told her what had upset me, boy was that wrong!!!! Bu I feel strangely relieved re her as she was full of negativity and i discovered very manipulative.............she once shoplifted right in front of me and I realised afterwards that if she had been stopped she would have simply said Oh I thought my friend was paying........the way she did it showed it was not the first time, really shocked me, don´t think she realised I noticed but I did----
On the old red wine now...............
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Readhead1 - I am so not getting over this.
All - who else feels like they are the point on an upside down pyrimad? How can you do everything you are supposed to do when you are IT! I'm so damn tired and I'm sure you all are too! No matter what, you just can't do enough. Understanding, compassion? What is that? On top of everything we have to deal with, we have this god damn recovery to deal with. It's not easy. It's not fair. But we have to keep going. When the hell do we catch a break! Never.
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Lily. I totally get where you are coming from! I wish it was different. No matter what we go through and have to deal with there is always someone expecting more. I am on Tamoxifen and I feel totally helpless, inconsequential, and a lot of other things. Why is it that we can't get over this crap! We can't stop taking it but the side effects are increasingly terrible. I now have heart problems, lymphedema, and depression. WTF! Is this what we get for surviving? I'm not sure it's worth it.
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Lily, you don't need to give any excuse for backing out of volunteer work in my opinion, and those other people are just jerks. How dare they demand things of you when you're a volunteer. They should be thanking you for whatever work you choose to do not demanding more. As you said, they're toxic. Good riddance.
Starsong, I know what you mean about being unsure if just survival is worth all the crap. I can only hope it gets better. Do you have any alternatives to Tamoxifen? Are you on an antidepressant? I got my Effexor dose increased which has helped some. If I wasn't changing to Femara, I'd ask to increase it more. I'm hoping the switch to Femara helps. Lymphedema sucks. I don't have it from bc, but I have it in one leg from ovarian cancer surgery. I can "manage" it, but it gets old.
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