Calling all TNs
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Wonderful Val!! Keep dancing and enjoying life!!
I know exactly how you feel, though, and I still miss the old me, but I am grateful for every day I'm here.
I am also still grateful for your encouragement when my daughter was pregnant. My little granddaughter is now almost 2 1/2 !
Hugs to you from NYC!
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Hi everyone, I haven't posted in a while. I was just catching up and seeing how everyone is doing. I love hearing all the positive messages. I pray everyone is well. I was diagnosed 3 years ago in September. My double mastectomy was January 29th, so it's coming up on 3 years post surgery. I have found myself becoming more and more anxious as this date approaches. I go every 3-4 months for "thorough" physical exams but don't have scans unless there is a concern. No bloodwork either unless a yearly physical and that is next week. I swear I have PTSD. A good friend of mine has just discovered a recurrence and it's really been difficult. It just reminds me how quickly everything can change. My husband has noticed how I've "regressed" in my thinking and seem to be obsessing once again. I wish I didn't fall into this pattern. This is going to sound ridiculous but I think I'm creating a phantom shoulder pain and obsessing about it and googling mets to the shoulder, when in fact, it's probably from my peloton and the way I hold myself up when I'm riding. Yet..I'm convincing myself cancer is back in my shoulder. Ugh..thanks for listening. I just needed a place to share my thoughts...Maybe time for some meditation and deep breathing. Thank you for listening!
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I am sure every one of us can relate to scanxiety! Good luck with yours.
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Dear A4ggy,
I can absolutely relate to your last post. I was diagnosed in August of 2017, started treatment in September 2017 and at that time I was told that if it doesn’t come back in 2 years of diagnosis then your chance of it coming back is very small. I had surgery in January of 2019 and more chemo after that because my surgeon wanted me to see a different oncologist who is doing a lot of research in TNBC. My nurse practitioner is the one that reminded me that I had passed the 2 year anniversary and was so happy! It took me by surprise and she said no it’s a big deal you made it to 2 year anniversary- my oncologist was pretty matter of fact and said it’s better to get past 3 years - geez I thought well ok. Needless to say even though I’m past the 3 years and you are too I still have such anxiety producing worries. My shoulder hurt as well, I went to physical therapy because they diagnosed me with a frozen shoulder, but I drove my husband crazy because I believed it was cancer. Physical therapy wasn’t helping all that much. So I decided to stop going and just kept doing my exercises and all of sudden my shoulder quit hurting. Now I’m having back pain, both upper and lower and I’m so worried that it’s in my back now. It is exactly like having PTSD. I know how you feel! I thought this would be getting better but it gets triggered by many things. I’m sorry you are feeling this way too. I really hate it when people ask me if I’m cancer free? I want to say I sure would like to be both mentally and physically.
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Congrats Valstim52, that's wonderful news!! Thanks you for giving me hope as I am on my second battle and now Stage IIIC. I wish you all the best in life with lots of celebration and dancing! Keepin the faith
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A4ggy I think your feelings of worry about every ache and pain are absolutely normal! We walk a fine line between being aware of our bodies and being paranoid about recurrence. We have all been through a war and we do have a sort of PTSD. Yes give yourself a mental break with meditation and breathing exercises or whatever works for you. I know for me exercise is my vice, I just put my earbuds in and escape through music. Don't let the worries of tomorrow steal your joy today.Wishing you all the best.
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pkville & cookie54 Thank you for your replies. I find it very comforting. Sometimes even though I have so many friends and family willing to listen, I still feel very alone. I also don't love when people ask if I"m cancer free. My response is always "I think?" I mean who really knows? And I'm never mentally free. Exercise is a big escape from me too, however I've been avoiding my bike as I'm wondering if that's the cause of my shoulder pain? Ugh..I'm going to get back on in a couple days. I miss it. Lots of walking lately and walking in woods. This morning I took time to meditate and pray. I found it very helpful. I think I'm going to try to make a new habit and stop being so sporadic about it. I will do my best to stay present in today and I can't express how thankful I am for your responses.
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Does anyone have any experience with this antibody drug SYD985? I just got put in a clinical trial: and they want me to do SYD985 instead of 12 weeks of taxol, but its very hard to find any evidence that this has worked for people. Would love any guidance or anecdotal experience! Scary to think about not doing traditional chemotherapy...
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Gerry, Since this is an ongoing clinical trial, there won't be any data yet to show efficacy (or not). If you go to the link below, at ClinicalTrials.gov, the study details (inclusion/exclusion, etc) are posted. There is a 2:1 chance of being randomized to receive the study drug, vs physicians choice of treatment. Don't feel intimidated (by your doctor) to do the study. It is completely your choice whether you choose to participate or not.
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Kayak2, thank you so much for your note! I ended up getting my first infusion of SYD985. But honestly, the thought of not getting Taxol at all, and getting SYD985 as my first line treatment, is really scaring me, so i may end up dropping out of the trial and just starting taxol instead.
Thanks again for your note!
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Hi everyone! Happy December!
I hope all is well. I'm just checking in. It has been a while! I'm still here and well, there is no sign of disease. Which is good!
I hear you guys are talking about exercise a bit. What's this moving lymph tool? For edema?
Thank you.
- Frack
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I find that exercise is my best friend to rid myself of thoughts of reoccurance of cancer. I feel better after working out and less stress. So far NED. doing well. Next follow up appt December 18th.
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Martaj its good to "see" you and so happy to hear you are doing well!
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Today marks 5 years for me! Had to come and share with people who understand.
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LMV, WHOOOHOOOOOO!!!! Hip hip hooray!!! YAY you!!! Here's to many many more years of good health!
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Wow! I got some tears in my eyes and we’ve never met. Thanks so much for coming back on and sharing. And I hope you have cake. There should always be cake to celebrate big life moments. And this is a big one.
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thanks! We need a like button on here. :-)
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⭐️⚡️⭐️💫✨🌟⚡️Yayy happy happy happy good for you!!!!
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Woohoo!!!! Congrats to you! Wishing you health, happiness and peace always. Oh and lots of cake:)
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LoveMyVisla we are all cheering!!
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LovemyVisia,
Congratulations!!!!! I am so excited for you
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Congratulations, LMV! What great news. Thank you for sharing it with us.
Trish
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LMV, I’m doing the happy dance for you! 💃🏻 Always wonderful to hear a TNBC sister doing well at year 5.
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YAYYYYY LMV !
Cake for everyone!!
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LoveMyVizla fantastic to hear this news. Big smile on my face this morning seeing this! I’m looking forward to my own 5 year milestone next year. It feels like a big moment. Deep breathing until then
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Me, too Scotbird. My five year cancerversary date is August 29, 2021. Just eight months, seventeen days and three hours to go. But who's counting?🙂
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LMV - Congratulations!!! Yay!!!
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congrats to so many 5 years! That is amazing and a day I pray for. 🙏🏻 My friend just passed away. She and I met when we both found each other on this site. We connected via text and she was my bc rock. I could talk to her about anything. All the anxiety, the worries, etc. I am quite devastated by her passing. It was sudden although she was battling recurrence. She went in to hospital with trouble breathing and had a pulmonary embolism. She had 5 children. Her recurrence and passing have really brought back my initial anxiety. I turning to this group for support and understanding. My upper arm has been bothering me. It comes & goes. The anxiety surrounding it doesn't come and go. I thought it had to do with my spinning classes and spoke to my oncologist about it. She told me it sounded muscular and to rest it for a couple weeks to see if it improved. She also told me tnbc doesn't typically return to bones first and upper arm/humerus is even less likely. So I started to feel better and I rested it and it did start to feel better fast forward...m friend passed and I started spinning again. Arm bothering me again. Brain going to dark places. I'm almost to 3 years out. I'm just feeling scared all the time. Anyone know anything about what bone Mets feels like? Thank you and sorry for my not so positive message. Oh I should say I’ve been doing push ups to see if I still can without pain and I can and I had my husband wear boxing mitts and run me through a boxing routine and it didn’t hurt? I realize I’m super weird, but just wanted to see if my arm would hurt?
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My MO told me mets do not come and go symptom-wise.... they come and stay, and get worse. Try to breathe. I am 2.5 years clear and will do a final exhale in 6 months. But the longer you go with nada the more likely you are to be ok!!!!
Crossing fingers for us all!
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A4ggy, I am so sorry for the loss of your friend. Be kind to yourself
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