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Class of 2009 - Sisters in the same time frame

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  • micheleboots
    micheleboots Member Posts: 885

    Kitty, I have ten and that should be enough.  I am planning to take a dry run this weekend.  don't want to try something new on the day of the trip.

  • pj12
    pj12 Member Posts: 18,108

    Juanelle, 

    72 hrs a week!  That is too much. It must leave only time for sleeping :(  Hope this passes soon. 

  • one-L
    one-L Member Posts: 653

    Oh, it will.  It is the price I pay for working at a nuclear power plant.  It seems that they come way too often.   We have another outage starting in October, then we are through for a year.  I just have lots of work to get ready for one, then lots of cleanup after. 

  • pj12
    pj12 Member Posts: 18,108

    Juanelle... does this explain your long work hours? Getting ready to go?

    A U.S. recruiter is hiring nuclear power workers in the United States to help Japan gain control of the stricken Fukushima Daiichi plant, which has been spewing radiation.

    The qualifications: Skills gained in the nuclear industry, a passport, a family willing to let you go, willingness to work in a radioactive zone. 

  • micheleboots
    micheleboots Member Posts: 885

    That's a job I am glad I am not qualified for ...

  • txstardust
    txstardust Member Posts: 180

    Hi Ladies!!

    Glad to report clean scans and good reports from my docs last week on the BC front.  Whew!  I hate the anxiety.

    I am going in for surgery in 2 weeks for the LEEP procedure (to remove precancerous cells from my cervix).  Normally done in the office, but my uterus is oriented in a weird way, so I have to go under general anaesthesia.  

    I decided to forego the oophorectomy, at least for now, even though my onc really wants me to have it.  I can't take the Tamox for several reasons, so he'd really like me to get my ovaries out.  However, I still haven't gotten my period back (it's been over 18 months) since chemopause started, and I don't see the benefit of removing a non-operational body part.  The onc said he wanted me to have them out because it's possible that they'll start working again (I just turned 38 years old last week).  I told him that if I do start up again, I'd go for the oophorectomy, but not until then.  Is this crazy reasoning? 

    I'm sending out good vibes to all my sisters here who are going for checkups - may they all be good news!

    Hugs to all! 

  • micheleboots
    micheleboots Member Posts: 885

    Shelby great news to hear about the scans...keep up the good work...

  • pj12
    pj12 Member Posts: 18,108

    OK Shelby, you have set the bar for the rest of us! We want all good reports for the next few weeks. What a terrible decision about the oophorectomy. I personally have found Temoxifen much easier to tolerate than Arimidexx. Just me, I suppose. But I would be unhappy if I had an ooph so I could take Arimidex and then found it intolerable. :( Don't some younger women take Lupron shots to ensure menopause so they can take Arimidex?) 38 seems pretty young to be in real menopause so it does seem possible your periods might return. So many question with so few definite answers :(

    After several days of torrential rain and lots of tornado warnings and watches we are back on track with a sunny and warm day. I picked my first tomato our of "my" garden, DH picked a couple in "his" garden. Yes, we have separate gardens :)  When we first started the garden thing I had been to the Nathanial Hawthorne house in Massachusetts and they had lovely gardens with raised beds and flowers and herbs mixed together. So that is what I  wanted. He, on the other hand, is from Oklahoma and envisioned  something more "farm" than "fancy." So on a very small scale, we each have our own space. But we both have tomatoes so it is a bit of a competition to see who can do the best. Gardening is a problem in Florida as the bugs just attack everything. As soon as it gets warm enough to get a fruit some worm or bug discovers it and devours it.

    Going to meet a friend for her birthday lunch out today. And maybe a little retail therapy :)

    Happy weekend to everyone! 

  • fmakj
    fmakj Member Posts: 1,045

    It has been recommended to me to have an ooph.  I am 46 and am having irregular periods.  I have decided to wait until we see a definite decrease in estrogen (I do not want any extra side effects if possible) and then will have them removed.  I am being regularly screened (every 4 months) - just in case. 

  • one-L
    one-L Member Posts: 653

    Pam, no I am not going anywhere, but if you are trained to work with radioactive or around radioactive stuff, then you shouldn't have to worry.  I would do it if I was trained, the money would be great.  Maybe I could retire.  Good luck with the garden.  I was raised on a farm and have no desire to grow anything but flowers.  If I need food, I will go to the store.

    Shelby, glad to hear your good news.  I am glad that I am way past menopause.  

    I, also, received good reports from the doctors last week.  My Rad Onc released me, they were all excited that I had lost 30 lbs since my last visit, my bone density was a little better than last years, so that means that I am doing all the right stuff.    No problems with my mammo, so life is good.  I have to see my Med Onc again in 3 months.  Almost all my SEs from the Arimidex have subsided, so I am doing much better in that department also.

    Ready to start my week, I will not have a day off until next Sunday, it will be a very long week.

    Juannelle 

  • mimi1964
    mimi1964 Member Posts: 851

    Michelle, about the Ativan... it can and probably will make you a little drowsy especially if something as mild as a Benadryl makes you sleepy.  Secondly, do not drink when you take this pill would be my recommendation as a nurse, unless you would like to pass out and not get off the plane.  lol  If you are someone that has a high tolerance for medications and can handle wine or a drink with no problem it may not bother you.  But I would always advise to err on the side of safety.

    Have a great trip!

  • pj12
    pj12 Member Posts: 18,108

    Great new picture, Renee! 

    Wow, Juanelle, you've lost 30 pounds in the last year? Congratulations. You must be feeling pretty good about yourself.

    So glad to hear everyone is passing their screening tests this time around. It's about 10  days till my mammo so holding my breath. I used to be such the total optimist... now I steel myself for bad news. Not a pessimist yet, maybe a realist :)  It's kind of a shock in life to find out things can go wrong.

    Hope you all are having great spring weather. 

  • magob
    magob Member Posts: 242

    Jeepers, Mary Louise!  So glad your MIL was not there at the time of the explosion.  (Now there's a line I never thought I'd type on this thread - and just when we all thought treatment was the most extreme thing to ever happen to anyone!)  

    Shelby, nice to hear about your good check up.  I heard the ooph speech two weeks ago from my gyn.  I've decided to kick that surgery to the curb.  Chemopause does not seem to be going away. (However, I'm 48 and only have one ovary.) Your plan to go ahead if your period returns sounds good. We've all been so brave and strong, and we've really hit the treatments hard.  At this point, I say enough already.  My doc won't be happy unless he can take that ovary out and throw it against the wall!  

    So - Shelby officially brought the good check up torch to the parade.  Those of you who are due for a check up will be ready for a hand off soon.  Try to soak up the sun and relax.

    Pam, the gardening sounds fun. You keep those bugs the heck away from your tomatoes. As for the screech owl - it sounds like a horse to me, of all things.  Have a listen!  

    http://www.allaboutbirds.org/guide/Eastern_Screech-Owl/sounds

    Love to you all.  

    XO,

    Mary 

  • JustmeAlicia
    JustmeAlicia Member Posts: 629

    Great news Shelby and Juanelle ~  good luck Pam with your mammo.  I am sure all will be just fine. 

    Hope everyone is doing well !

    :)

    Alicia

  • mimi1964
    mimi1964 Member Posts: 851

    Thanks Pam the avatar picture was taken at Thanksgiving and before I gained a few pounds over the holidays.  I wish I knew how to lose some weight.  Lord knows I've tried, but since the Med Onc increased my Tamoxifen last November I can't do anything but want to eat.  I stay hungry all the time.  It's an awful feeling.  I really hate it.

  • eph3_12
    eph3_12 Member Posts: 2,704

    MAGOB-  Loved this--(Now there's a line I never thought I'd type on this thread - and just when we all thought treatment was the most extreme thing to ever happen to anyone!)  That was quite the news article, glad the Mary Louise's MIL is safe!

  • mimi1964
    mimi1964 Member Posts: 851

    Wow this thread has slowed down.  I went to see my med onco on last Friday and got a great report... good to go!  I talked with him about the increased appetite from the Tamoxifen and he wants me to try Arimidex.  I am a little concerned about trying the new med from all the potential side effects I've read and heard from some of you ladies. 

    Help me out here... Juanelle aren't you on Arimidex?  I remember you having some side effects from the medicine you were taking.  Anyone else taking it... He told me the reason I was most likely having the increased appetite on the Tamox is because of the steroids that are in it.  He also said that the AI's were invented because the European women refused to take a medicine that made them gain weight.  LOL!! Know their pain...

  • pj12
    pj12 Member Posts: 18,108

    Renee,

    We are a quiet bunch these days, aren't we? Must mean things are going well. Hooray!

    I had my 2 year mammogram and all was well. I was nervous because 6 months ago some red flags came up but guess that all was a false alarm. Onward and upward!!!!

    I don't know about what your dr told you regarding Arimidex. I've read the Arimidex threads since 2009 and never heard anyone say those "good" things about it. I took it for about 15 months before I switched to Tamoxifen. The negative SEs came on slowly and I did all the recommended things; exercise, calcium, Vitamin E, good diet, etc. I don't know if I would still be on it had I not developed neurological problems but that pushed me over the edge and I told my DR I had to stop it and was willing to try Tamoxifen. I have had a much easier time with Tamoxifen, what I would call minor versions of the same SEs I had with Arimidex but not the asthenia, terrible weakness that made me stop Arimidex. I never noticed any weight gain, a common complaint, when I was on Arimidex and I have not had any weight gain on Tamoxifen.

    I ran my stats thru Adjuvant! Online (it's supposed to be just for DRs but I signed up using DH's info) and Arimidex gave me a couple percentage points advantage over Tamoxifen but not enough for me to want to stay on it. Also I had a good bit of hair loss on Arimidex and my hair has thickened back up. Not that I would have quit the drug because of that but a nice turn around. My hot flashes are more like warm surges now, on Arimidex I literally broke out in drippy sweats. :( But, as I said, I would have put up with those annoying SEs because Arimidex is considered the better drug for ER+ post-menopause women... just could not handle the weakness which I think it a known SE but certainly does not affect everyone and might not for you. 

    When I started Arimidex it was still under patent and cost me $400.00 a month (not covered by my insurance!) About the time I stopped it the drug went generic and now costs $20-$30 a month, I think. So be sure to look into the generic product if you have to pay for it.

    Wishing all my 2009 sisters good reports and good health!

    Pam 

  • mimi1964
    mimi1964 Member Posts: 851

    Thanks for the information Pam.  I told my doc I would try it for a month or two if I started having problems it was back to Tamoxifen for me, or if I take anything.  Really don't want to take anything at all.  So tired of the side effects and everything else.  Yuck!!!  Got it filled today and it cost me 9.00 so my insurance paid well on the generic.  I guess we shall see just don't know when to take it morning or night.

  • one-L
    one-L Member Posts: 653

    Renee, I am taking the generic.  I had some SEs that started about 3 months after I started Arimidex.  My fingers and hands hurt so bad, especially a night.  When I would reach down for the covers in the night the pain would wake me up.  Also first thing in the morning, but as soon as I started moving my fingers, they limbered up.  It has now been a year and my hands are not hurting anymore.  I did gain weight at first, but that has tapered off and I have been able to lose, so that is a good sign.  I didn't notice losing any hair, I have so much it would be hard to notice.

    I am still  working tons of hours, but maybe if he stars align, then maybe this outage will be over next week and I can get back to my regular life.

    Hope everyone has a great Easter.  At least I don't have to work on Sunday.

    Hugs

    Juannelle 

  • Luah
    Luah Member Posts: 626

    Pam: I'm in same position as you... just had a 6-month follow-up mammo with detailed views today because of an irregularity last October. Geez, it was excruciatingly painful I guess because I have so much scar  tissue. It's been 9 months since end of rads and 18 months since my lumpectomy but I still find my breast is very tender.

    I'm trying to be serene about the mammo, had an MRI in January which was fine, but it's still  anxiety-producing, isn't it? I probably won't get the results for a week or so.

    Hope you all have a lovely weekend. The weather here has been really awful, and I think it's affecting my mood!

  • pj12
    pj12 Member Posts: 18,108

    Crossing my fingers and holding my breath for you, Luah. I'm sorry you have to wait for mammo results. My facility has the doctor come in before you redress to give you his opinion/results. I've had the same doctor the past two times and that is very nice too. They send the results to my med onc and she always goes over them with me when I next see her but that might be a few months and I  would be a basket case if I had to wait that long.  Since my lumpectomy I've been on a every 6 months mammo schedule but am hoping that maybe now I will go back to once a year. Would love that! I was seeing my med onc every three months but graduated to a 6 month schedule last visit... am looking forward to going to a 12 month interval soon, I hope. Tired of being a patient but I do like getting good reports. :)

  • mimi1964
    mimi1964 Member Posts: 851

    Juanelle, I was thinking it was you taking the Arimidex.  I also remember the side effects that you shared.  My Med ONco tried to tell me that it wasn't the arimidex (on generic here also) that caused the pains, etc... He said it was most likely from the Taxol/Taxotere.  LOL they will say anything to get you to take a pil.  I have been taking it now for about 5-6 days and have started having "HOT FLASHES" again.  I haven't had these in quite sometime.  If they continue or I have any other problems I will be calling and getting a script for Tamox and restart it.  I don't have many maybe every few hours but they come on like a wave out of nowhere.  I had stopped having hot flashes several yrs ago except for when I was truly hot.  haha!! It's really not funny but what to do about it.  Stop taking any medicine and worry about a recurrence?? I hate this because I don't want to take a pill for 4 more yrs. Uggghhh!! So ready to get on with life and just live it Laughing!!!!!!!  Hope Everyone had a wonderful Easter....

    Hugs

    Renee

  • MarieK
    MarieK Member Posts: 467

    Hi All!

    I haven't been on in a while - it's been busy around here with the kids and so on.

    Shelby I came to the same conclusion as you regarding the OOPH.  No period so no need to remove something that isn't woking.  The benefit would not justify the risk of unnecessary surgery.

    I'm still on Tamoxifen.  My ONC gave me a choice and I'm sticking to what I know rather than switch to Arimidex and take on new unknown side effects.  I just need to keep up on the PAPs and ultrasounds.

    I'm almost 3 months post exchange (reconstruction with gummy) and the next step for me is a possible revision and/or nipple surgery.  But that will all wait until the fall...

    I'm looking forward to a quiet summer - no surgeries or tests for me. 

    I see my ONC again at the end of August and I have another Zometa infusion then too. 

    Until then I plan on enjoying my garden, the beach and getting my daughter off to university.

    Enjoy the sunshine whenever you are!

    Marie

  • magob
    magob Member Posts: 242

    Nice to see your post, Marie.  Here's to a good summer for you and for all of us.  

    Last week was kind of rough.  I have been dealing with what I thought was a bladder infection, and antibiotics were not helping.  Testing showed no bacteria in urine, but there was blood.  My gynecologist would not even see me at that point.  Insisted on a specialist.  Long story short - he insisted on a CT scan.  I've had way too much radiation, and did not want the test.  (For reference, radiation from one CT scan to the head is equal to about 30 or 40 regular x-rays.)  A bad backache had everyone suspicious of the worst.  So I did the test.  Kidneys and bladder are fine.  However, there are several fibroid tumors in my uterus. (So that's where the backache is coming from.)  Thank you, Tamoxifen.  No one had any explanation for the symptoms with the bladder.  

    I'm crabby. Enough of this.  They used a bazooka when a flyswatter would have been fine.  Thousands of dollars, too much radiation, and I'm learning more on the internet than the doctors will tell me.  

    First thing I learned was that cytoxan is tough on the bladder.  It can cause cystitis.  Also learned that fibromyalgia can cause these flare-ups.  So I'm certain that's what's happening - it's cystitis.  

    The fibroids are undoubtedly from Tamoxifen.  So I'm sure I'll get the speech about that "easy little day surgery" - my doc just puts the rosiest glow on it.  I'm tired and mad, and I want to tell him to hop up on the damn gurney and enjoy all of that fun stuff himself. Enough!  No more surgery!  No more taking away my female identity one piece at a time!  

    I'm at a crossroads with Tamoxifen, too.  So far, it's been a battle to stay on it.  Weakness, tremors, joint pain, and now lots of fibroids.  It has diminished my ability to get out and live a normal life.  I've been on it for a year and one month.  The ONC says arimidex will probably be tougher on me - says it's Tamoxifen or nothing.    

    Can I go on without the protection of one of these drugs?  Can I do this without worrying?  I'm looking for the decision that will provide the best quality of life.  Wish me well, sisters.

    And thanks for letting me rant.    

  • pj12
    pj12 Member Posts: 18,108

    Oh Mary,

    So sorry you are going through all of this. It just never ends, does it? I hate all the CAT scans I have had and  all the ones they want me to have in the future. Easy for the doctors to say how it is necessary. At this point I am more worried about getting cancer from all the radiation I have had than I am worried about a BC reoccurrence. Maybe that is not realistic but it's how I feel.  And the cost!!! Bad enough when insurance is picking up the bill but, like now, I have not met my deductible so everything is out of pocket :(  I am supposed to have a lung CT in June but I have decided I am just not going to call and schedule it. I think the doctor's staff is too busy to notice. Might do it in the fall... we'll see how I feel then (mentally, not physically).

    So many of us felt great before our BC diagnosis! I know I sure did. Since I am older (post-menopause) I started out on Arimidex. I was determined to make it work. But after about 15 months I cried Uncle and asked to be switched to Tamoxifen. I have found it much more tolerable. But everyone is different. You just have to do what is right for your body and soul. 

    I am interested in your remark about SEs. Can you tell me more about the kind of tremors you are experiencing and is that a known SE of Tamoxifen?

    You have earned a good rant! Glad to be here for you.

    Pam 

  • slousha
    slousha Member Posts: 181

    Hi, sisters

    I was not posting for a long time, but I'm reading your posts regularly. As said how great we felt us before BC, after all heavy treatments, we are suffering now from this long years hormonal therapy. I'm on Femara 13 months, despairing because of SE's, my onco said I could move to tamoxifen, but I had have a thrombosis before BC and am afraid of therapy with anticoagulants ones more...

    Not till Sept meeting my onco. I would like to spend the spring-summer months in good mood, wishing the same for all 2009 sisters.

  • pj12
    pj12 Member Posts: 18,108

    Wishing you a good summer, Slousha! If we could just forget about BC for a little while......

  • magob
    magob Member Posts: 242
    Hi Slousha.  Nice to have you with us.  I hope your summer is beautiful and that your side effects go AWAY.  
     
    Thanks for the good ear and strong shoulder, Pam.  The tremors are weird.  Kind of like palsy. I
    really notice it when I'm exercising.  Muscles and limbs just don't move smoothly.  Usually shaky.  I kind of shuffle when I walk, too.  Tamoxifen makes it worse.  I have fibromyalgia, and chemo was especially hard on the central nervous system.   My Oncologist has some patients like me, and it sounds like she is not surprised by my SEs.  There was one woman who kind of went through some similar things, and after two years on the drug, she decided that it was just not worth it to live that way.  
     
    There are women out there who cannot take the drug.  I have to decide if I am being whimpy, or if I am one who just cannot tolerate it.   
  • mimi1964
    mimi1964 Member Posts: 851
    Mary I wouldn't worry about it... you are not whimpy you are probably just having problems taking it.  Ask your doctor about trying a decreased dosage to see if that helps.  you never can tell and a partial dose is better than none at all Smile  I was taking only 1/2 a dose untill he increased mine and I gained a ton of wt.  now I am on the arimidex.  So far so good.... keeping my fingers crossed that I can lose wt.

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