Calling all TNs
Comments
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cccmc2 - I felt worse mentally after treatment ended than I did during treatment. Well, technically I am still in treatment because I'm doing Xeloda, but post active treatment.... I think it takes time to get back to feeling normal. I have a lot to face because I am losing my job in a couple months. Luckily, I'm just now starting to feel like I may be able to face interviewing, even though I finished IV chemo last December. Anyway, my point is that I would expect that it will take 6 months before you have normal moments and then maybe a year before you aren't thinking about cancer all the time. That's my guess anyway, but I know everyone is different.
R
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Yes, totally normal. To me it was like a funeral. You've been through so many emotions, lots of planning and activity, and then it's done and you're like "okay, now what do I do?"...And so begins the process of true grieving, because now you aren't distracted and the reality of what you've been through truly hits.
Like rdeesides said, I too felt worse when it was over. But it really is temporary. Within a short period of time you will start doing "normal" things, and as the time goes on your focus becomes more about the everyday stuff as it was before cancer.
Rdeesides, sorry to hear about your job loss, and good luck in your search!
Vickki
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LoveMyVizsla....CONGRATULATIONS‼️ I’m right behind you. 3 years October 14th.
Have fun and stay healthy. ❤️❤️
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I have one more round of Xeloda and exchange surgery, then that’s it. Thrown back out in the world to try and survive.
I struggle too with now what, I guess that is what they call our new normal.
I am going to focus on losing weight, getting physically strong again and some career certifications so I can get back inthe workforce. I figure these will help take my mind off things until the approaching 3 month oncology appointments that will probably increase anxiety around that time.
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cccmc2 - I too think it's normal. I'm not there yet, just finished my last dose of chemo last week. So I'm not at the "now what" stage. But I'm already wondering how I will move forward when all is done. How will I have a normal life with recurrence fears always there? Its difficult not having other therapies available to potentially keep this cancer at bay. We just have to hope that out treatments did their job and the cancer doesn't come back. This is what I struggle with.
Santabarbarian - I like what you said, "Worry will not protect you." I need to post this on my fridge and every mirror in my house.
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To be honest, I had a ton of time to process having bc during the time home for chemo, surgery and then healing from rads and I didn’t. I really just focused on getting thru it and tried to distract myself. Now that I’m mostly done (doing Xeloda) I’m spending a lot more time reflecting and working on my mindset. It takes a lot of time and some days are better than others
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Hello. I am 9 years out from first diagnosis and 5 years from a recurrence. Doing very well and just posting to give you encouragement. Many boards don’t have long term survivors posting and I’m sure they are out there. I come back to the boards once a year to update but otherwise don’t spend much time thinking of breast cancer. I do yearly MRIs-mostly for my psychological health. If something hurts more than 2 weeks, I get it checked. Every day is a blessing. I’m grateful to God, my doctors, friends and family. Being a survivor is tough. Anxiety always lurks and sometimes I fall in to not remembering how blessed I am. Prayers for all going through the fire.
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thank you ladies
I just booked my first counseling session. Hoping having someone to talk to helps.0 -
Cccmc2,
Glad you scheduled to talk to someone, and hoping you're feeling better soon.
Hugs, Vickki
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crs319 - thanks so much for the update! So glad you’re doing well - it really means so much to have survivors share with us!
cccmc2 - good luck and please let us know how it goes. Some days I really think I’m on the right track, but then I get bogged down in my anxiety again.
R - how much longer on the Xeloda
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A good piece of advice a LT survivor gave me is to make plans, things you are excited to do and enjoy-- visiting a friend, taking a small trip and also consciously thinking about my purpose for being here. Having a reason to live and things you want to do!
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And a final thing that can really help sleep and anxiety is neurofeedback. There is a kind called neuroptimal and it is very effective and works quickly - 10 hours of clinical time. Your brain is able to practice chilling on an unconscious level w feedback from machine. Effortless and instinctive. Brain re-sets itself in calmer mode.
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cccmc2 I think any reaction after diagnosis, during treatment and after treatment is normal. Which isn't to say that various therapeutic treatments aren't a good idea. I think they are. My feelings bounce all over the place. I've felt fleeting relief each time news has been good but I haven't achieved an over-all sense of relief. I never know how to answer the question I get from friends, "How are you?" I don't really know. I'm here. I'm NED. They want me to say, "I'm good. I'm fine. I'm great" Usually I say, "Good enough."
Meanwhile, I see that many people on the boards have achieved milestones and I'm truly happy for each of you. Meadow I just saw your beautiful 5-year post. Congratulations to everyone.
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Hello, so I just started my second week of Xeloda 4000mg a day, two weeks on one week off. So far so good except I cannot SLEEP
My journey thus far diagnosed 1/31/18 with invasive ductal carcinoma TNBC and BCRA1 positive. Family history my Mom diagnosed at 39 passed away at 41. Neoadjuctive chemo 12 weeks of Paclitaxel and 4 week AC. Bilateral mastectomy and 11 nodes removed one positive. After tissue expanders are full 5 weeks of rads 5days a week. There is so much more to this story, but no energy to tell all right now.
Considering doing rads and Xeloda together my rad onc does not have a problem with this. Has anyone else tried this?
Sorry this is so generic my sleepless brain cannot process properly right now.
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aterry: I absolutely understand the "good enough" answer. My answer to friends/family usually comes out "not stellar, but ok". It's really difficult to navigate this diagnosis/treatment coupled with navigating everyone else's feelings as well.
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Hi joy
I have just finished 6 weeks of rads and started Xeloda day after I started radiation. After my first cycle 2 weeks on one off (4000mg per day) I had low neutrophils so had an extra week off. I have been quite burnt by the rads but no blisters thus far. My oncologists were both in favour of doing the two concurrently and had I started to burn quicker or had a bad reaction they would have stopped the Xeloda. I think having the extra week off in the middle helped. Plus they reduced my dose second round to 3000mg per day. I get a lot of tingling and my fingers have started to crack in places but side effect tolerable so far.
Good luck - Helen0 -
Flynn - I'm also doing Xeloda after 4 chemos, surgery, radiation. For me, its side effects keep me (and those who love me) feeling like I'm very much in active treatment. No time for processing - just going day to day.
To be honest, I have other challenges that keep me focused on day to day: only sibling, my 61-year-old brother died while I was doing IV chemo in Feb and could not go to him; 30-year-old son is now jail for drugs - which is a blessing as we know where he is, and he's alive; 36-year-old daughter's marriage has ended (she lives in Ireland so long talks have to be scheduled around the 6-hour time difference).
I have the most wonderful husband in the world, though, and dear friends. How would we get through this without them.
I hope to enter the Keytruda trial in December, but if I don't get into the medical arm, my onc will let me finish Xeloda. So depending on which arm of the trial I get into, I'm done in March or Dec, 2019. A long, long, road.
Thanks to long-term survivors for checking in. It does uplift us.
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Ksh0227, can u update ur profile then we can maybe explain what some of us have been thru. We are here to support you..
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Ksh0227 / Sukhan, I'm very sorry that your wife's cancer has progressed and hope that the current treatment proves more successful. You might want to copy and paste the information shared on your other thread. Some of us have certain topics flagged so we see them every time we visit the forum. It's easy to miss information posted under a new title. A reader here may have experience with your wife's current medication plan that could prove helpful.
Lyn
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Paula, it sounds like you are on a long road with a lot of challenges. I hope it pays off for you and that when you’re done, you’re done. I’ve been fortunate to have very minimal side effects with my 1st cycle of Xeloda. Unfortunately, my blood counts didn’t hold up so I’m taking an extra week before resuming, at a lower dose. Blood counts have been my Achilles heel this whole journey. So glad that you have a supportive husband and friends! I’m very thankful to say the same. It would be even harder to get thru everything without that, I think. Best of luck getting into the Keytruda trial and wrapping up Xeloda! Please keep us posted on how you’re coming along.
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My 3 year MO visit went well. I do have groin/hip pain due to arthritis. She ordered therapy to help the muscles. With lymph edema therapy and now this, a good part of my week will be in therapy. Not complaining just hate the constant reminder
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Waving to Cathytoo we were in this journey from say 1. Meadow, Sylvia and others thinking of you all
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Hello Val,
I was glad to know that everything went well with your three year MO visit.
I do hope the therapy will help with the arthritic pain and I also hope you are making progress with the lymphoedema therapy. As you say, it will be taking up a good part of your week but if you get good results it will be worth it.
Thank you for having me in your thoughts. You are often in mine.
I have not seen Meadow lately on the thread but I do not have time to come on this thread that often, but I always look for names I know.
Wishing everyone on this thread all the very best.
Sylvia xxxx
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Valstim52....Waving back to you❤️ Tommorow will be three years since I was diagnosed with TN. My bloodwork was good and my mammogram “All OK”‼️ I am so happy to be writing this little message to you and all of our little group that began this hard journey together. I pray that ten years from now we can send a wave and love to each other. Can’t say it’s easy. I live every day to the fullest but also with a little thought in the back of my mind that says “What if if comes back?” I push it aside and move forward. Life is good with some hard bumps along the way as we know first hand. Stay well my friend and keep in touch often.
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TOMORROW THREE YEARS‼️
Thinking back over this hard journey and sending love and the very best to my BC sisters who were by my side...
of course Annie...
ever present, Sylvia...Meadow...Miss Bee (Brenna), Life Aloft (Kelly), LovesToFly (Jill), Valstim52 (Val), Batesburg (Janet), LoveMyVizsla (Shelly).
To all the wonderful women I don't know who are just beginning or going through your own journey...I wish you what I wish for myself...a long and healthy life...with this difficult time just a memory. Stay strong. ❤️❤️ Cathy
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Three years...fantastic, Cathytoo!
Lyn
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VLH...Lyn...OOPS, sorry for leaving you out. ❤️
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No worries, Cathy. I've not been super active on this topic. I'm just glad you got good news!
I have my 2 1/2 year mammogram this coming week and am hoping for a favorable report as well.
Lyn
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I am so happy to hear these success stories!! It brings me joy and hope!
4th chemo today. I am responding very well to chemo. 3.8 cm Tumor was declared "gone" after 2 chemos. I can still feel a tiny lymph node but the big one was also declared gone. Maybe the little lymph node is processing all the dead cells out of my system?
It's all about sweeping up those last cells... I have few actionable pathways for a second chemo. So I am considering copper chelation as a follow up... great results for non-recurrence, if you have a PCR.
Anyone else do that?
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congrats to everyone celebrating anniversaries of NED & thank for checking in with us!
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