Stage 2 Sisters Club
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Hi all
Thanks so much for all the responses - you were all what I needed to take control back! My husband and I started seeing a therapist and it's going great. We've always communicated really well but it's nice to have that 3rd neutral party. We've gone twice and I think a few more and we are good!
I also made a very big decision - I'm stopping the Tamoxifen. I haven't told my onco, I'm going to give it 2 or 3 mths then if things get better I will tell her if not I'll go back on it. The side effects and quality of life just isn't worth staying on it. I hit 4 yrs in March and feel like I've gone above and beyond what I can handle. My body and joint hurt so much I have pain 24/7. Haven't told anyone other than my husband and he is scared but is supportive and understands.
Nisa - Congratulations on 3yrs!!!! How is your brother doing? I keep him in my prayers.
MJ - Congratulations on your 3yrs!!1
Everyone else - listen to Ruth - she is the best with advice and research
Love to you all
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I am IIB. Not sure of grade. 2 of 3 nodes were involved. I have CT scans, bone scan, and cardio test scheduled for next Friday. I've had lumpectomy and am scheduled to see my oncologist in two weeks to discuss scan results and which type of chemo to do. I am nervous and some days I even feel a bit frightened. What scares me most are all the horror stories I read on this site regarding the SE from chemo. My chemo is tentatively scheduled to start the week of May 15th.
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owens69...everyone is different with chemo. I had absolutely no bad side effects. I felt tired I lost taste had a little diarrhea but no nausea at all which was a blessing. I also only had TC regimen as I was fearful of the ACT and the fact that I have some heart issues.
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I did AC and did fine. I felt kind of like I had a slight case of the flu (but never threw up or anything). I worked full time, still had a kid at home, and did everything I had to do and most of the things I wanted to do too. Not something I ever want to repeat, but that is why I did it in the first place. Remember, if chemo is warranted; then it is your ALLY, working FOR you to kill the terrorist cancer cells. Do NOT read the threads about chemo. They will just creep you out. It is only natural it is the people who are having trouble with it are the ones talking about it. Hang in there!!
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Ruth - Wow, 11 years my friend - Congratulations! 🎉💥 After the first decade you are allowed to celebrate in excessive ways, so go for heavy calories and champagne! 🍾 🍰🎉. I am amazed you are still on the boards supporting others as much as you do. Thank you from everyone you have helped throughout the 11 years! Do you remember anyone who helped you in your earliest years? I hope the painting of the new bathroom gets all the energy out the way. Please let us know how it goes. What sort of follow-up do they do at 11 years?
Mommado - What a hard decision for you to make but it is the only way to know the role of Tamoxifen in your pain. Four years may have been enough. I didn't get to complete my chemo schedule due to SE and I feel/hope what I got was enough. Crossing my fingers for you. Let us know if you notice changes right away. Thank you for asking about my brother, and for prayers. Most of the time he is in pain, and it hurts to hear him ask when he is going back to work. But when he occasionally has moments of full clarity, he can hold brilliant conversations.
Owens69 - I am sorry you have to join us. This is the best place for information and support. You are at the beginning of this road which is the hardest part for most people. It gets easier as you start going through treatment. Remember that it is often the case that people who have issues write on boards. Hope you go through it as Ruth and many-many others did. Did you read that cold caps have been approved by the FDA? Hope you save your hair. Are you going to do Oncotype? If it is a low score, you could skip chemo!
Hugs to all, Nisa 💕0 -
No, I am not at 11 years.....it was 9 in February (I don't want to jinx anything by not correcting that!). I am down to seeing the oncologist once a year; he does blood work, tumor markers, pokes around a little and then hopefully out the door. About BCO, one of my friends, a college professor, had been diagnosed about 6 months before me, and along with sending me tons of her own research, told me about this site. I got lots and lots of information from the home and research pages, but didn't join the discussion board until 2 years later because I tended to go to THE WORST CASE SCENARIO threads. Which I did not need as I knew what I needed to do and had put myself in a 'don't think about it, just do it' mode. One reason I still stay around is to add more of a balanced and hopefully positive perspective for newbies. The other reason is that I have made lots of great friends here!!!
Mommado, hopefully going off will allow you to find out if the stuff you are dealing with are Tamoxifen related or not. Sometimes it is very hard to know what is the right thing to do!
Now back to the painting.....I am trying to paint over some pretty crappy trim, which is not going well. I hope it looks better with a second coat!
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NisaVilla, thank you so much for your kind words. I did find a great distraction from my breast cancer anxiety but I still get down with thoughts of possible recurrence. I also hate tamoxifen and wish I didn't have to take it. I have my oncologist visit coming up May 4 and I don't know why butthe anxiety buildup is terrible before I gotta go. It must be PTSD.
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It is PTSD, I still break out in tears after a checkup......speaking of which, I just passed mine so am officially 9 years out. I celebrated by eating a big, juicy mushroom swiss burger & drinking a delicious beer......as long as we don't talk about cholesterol, I am good!
Anyway, I don't care, that is what I wanted to eat; and I am extremely, extremely, extremely grateful for every day and will think about the diet tomorrow.0 -
Ruthbru - congratulations on 9 years! And thank you for continuing to post here - it's really encouraging for those of us just starting on our journey.
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Ruth - wonderful news! 💥💥💥 I wiish we could post videos so that I could sing to you a congratulations song! I have no idea where I got you were celebrating 11 years, but 9 is awesome too!!💥💥 It is late Monday night and I am celebrating with you eating 3 Classic Oreos. I'm not really into sweets (much rather have your mushroom Swiss burger) but no better choices in my pantry.
Giazuc - it is all normal: the pre-visits anxiety, the fear of recurrence, the whole thing. And over time, the fear gets smaller and smaller and one day it only shows up at follow-up visits. And then you are finally free! In the meantime, have fun with your distractions. I want your skin and all the fun you seem to have with those products. You would have a field day my (almost) make-up free face!0 -
Congratulations on 9 years, Ruth!! You are an inspiration to many here.
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Ruthbru - yes, always a happy dance when we get these yearly scans behind us! PTSD here too for sure (dx 4/18/2006). okay - now you have me seriously thinking about that mushroom swiss burger! The mushrooms make it healthy right?! I just did my yearly scans last week and am waiting for Dexa scan report back. I have bone issues so will get my bi-yearly Prolia injection next month. Sending HUGS out to all my sisters!! Joann
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Ruth - Congrats!!!!! You are an inspiration for sure! Glad you indulged - would love a mushroom swiss burger right now too!!! Sure beats yogurt LOL!!!
cp418 - Congrats on 10 years!!! and thanks for checking in....
Many, many, many more continued good years for both of you!!!!
Mary Jane
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Congratulations on 9 years Ruth, you're my inspiration!
Thanks NisaVilla, I'm trying to stay distracted and positive but tomorrow's my oncologist visit and I'm scared. I don't know why I have to feel lie this. I found a mole on my back and gotta show her that too! Now I'm freaking out about skin cancer too. I was already a hypochondriac before the breast cancer and now it's so much worse.
But when I think of people like Ruth I feel so much better. Thanks for posting here Ruth
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Good luck with you appointment, Giazuc. Let us know how it goes. Yesterday I made my oncologist look in my ears & up my nose because I thought I might have a sinus infection (or cancer of the nose....yes, I did not follow my own advice and googled that one). I said, "Since I am here anyway, and you are a doctor, I am going to give you a little extra work." Ha! He said it was allergies; and upon hearing that I, of course, immediately felt better and today my symptoms have completely disappeared. The mind is the hardest organ to try to control!
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Ruth - the sudden disappearance of symptoms was hilarious! Love the extra work you gave him. He sounds like a great Onco. Mine seems so burnout, i sometimes think I should find a new Onco with a sense of humor.
CP418 - Comgrats for 10 years! Please tell me about Prolia. Arimidex gave me osteoporosis which I have made friends with. No exercise, calcium, awful dark green veggies, or Vit D3 have put a dent on the osteo.
Glazuc - good luck tomorrow! I hate to disappoint you but all the hypochondriacs in the world are no longer. The new name is "illness anxiety disorder" -- a boring replacement for a word that we all have playfully used for so long.
Did I share my big news? I got 10 highlights of 3 tones put in my hair - big deal. Best part, it makes me look 2 months younger 😜
Hugs, Nisa0 -
Giazuc - I see a Dermatologist for yearly skin evaluations who tracks my numerous moles/freckles for changes. Over the years I've probably had about a dozen removed. Some were annoying in rubbing against under garments - - super easy removal and my peace of mind.
NisaVilla - I developed osteopenia after 2 years on Femara and was initially started with twice yearly Zometa infusions. I continued to have osteopenia after a total of 8 Zometa infusions. At my last onc visit, I asked to switch to Prolia which I much prefer as injection over Zometa infusion. Prolia is a different class of bone drug compared to Zometa (bisphosphonate). I realize it may take several injections before there may be an improvement. One poster had mentioned it took 2 years for her bone issue to return within normal range with Prolia. I figure I already tried Zometa so hoping Prolia might help me. (Plus I exercise and take Calcium, Vit D & K supplement, Mg too supplied by my nutritionist.)
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Nissa, so sorry that your brother is in pain so much of the time. I'm sorry about the whole situation.
CP and Ruth - congratulations on your milestones and thanks for helping the rest of us along. Ruth, you'd think the trim fairy would have come along to grant you a wish in honor of the occasion
I don't dread seeing my MO but completely lose it (mentally) over mammograms ever since dx. I had my 2nd since dx today and survived it - with an all clear, thank goodness. It's the longest 2 hours imaginable...
Owens, hoping you'll get a low Oncotype...
Nissa, enjoy your highlights.0 -
CP418 - thank you for sharing about Zometa. It was recommended to me but the word "infusion" gave me pause. Prolia sounds like a more user-friendly treatment.
Hopeful - thank you for your kind thoughts, As if stage 4 brain cancer were not enough, today my brother was diagnosed with a frozen shoulder. I had that once and the pain was horrendous. Clear mammogram: yes, yes!
Nice rest of the week, everyone!
Nisa 💕0 -
Got my results back from my Mammo and MRI of my one breast. All clear! When they do the MRI does anyone know if they check the mastectomy side with implant at all?? Couldn't it come back it that side even though mastectomy? Today I have my mo appointment -have not been able to lose any weight I put so I am assuming cholesterol is still up. I guess I have to not eat!!
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That's great news ThinkingPositive! When I had my pre-op MRI, my entire upper abdomen was in the picture. The report from the radiologist should have details - I always try to get the report before I see the doctor in case I have any questions.0
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ThinkingPositive - Way to go with all clear! I do as Grandma, look over the report before sitting down with MO so I have my questions ready. Same with blood work which gets done one week prior follow-up. I know if I don't have questions, my MO will spend 20 seconds on it and move on. I have been paying more attention to reports (and feeling less safe with MO) since 2 acquaintances fired my MO for missing / neglecting to act on significant findings.0
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Nisa, what a misery for your brother. I'm sorry.
It must be tough not feeling as confident in your MO as you'd like...0 -
So I had my oncologist visit yesterday and I'm convinced she thinks I'm crazy, lol. Anyways, thank goodness everything is ok and it's just a mole on my back. Illnesses anxiety disorde, sounds about right...
Thanks everyone for caring
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Yea for moles on the back! Glad everything checked out. Go do something FUN to celebrate and report back!
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giazuc, if you are crazy then so are the rest of us. Glad you got good news.
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Giazuc - My dermatologist thinks I'm crazy when at each yearly appt - I tell him I want to leave a donation (mole). So I've been removing the ones that rub my clothes even though they are benign. He says he is keeping my collection (he had to tell me he was joking).
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cp418...I saw this article as well and asked my MO about whether I should switch from actonel to prolia. He told me there is truth to the article and to talk to my osteoporosis specialist about it. Do you take it
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Hopeful - Thank you my friend. Yes, grade 4 brain cancer sucks, as you know. I wish it could make any sense; there are no even clear risk factors for this monster!
Giazuc - Congrats! I like moles
Molly - I agree, we may all be crazy and how could we not?!
CP418 - Yay to Prolia! Thank you so much for article. Very persuading findings. I really like the idea of a shot every 6 months instead of an "infusion" - word that brings back unwanted memories.
Everyone - We have been each others' Moms in so many ways. Happy Mother's Day!
Hugs, Nisa
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