Calling all TNs
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Nifer - my mind is still foggy - I find myself searching for words way too much! Some days I feel great, but some I just want to go back to bed. Our doctors tend to downplay the post chemo experience, but I really think what we are experiencing is very common. Our bodies were depleted of all of our healthy cells (and the bad ones!) - how can’t it take some time to recover?
I’m listening to the theory that as long as your treatment was, from diagnosis to last day (rads, chemo, surgery whatever) is how long it can take to feel 100%.
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I have been feeling crampy and having lower back pain for three days. I am about three months post chemo. Did anyone get their periods back and if so did it all come back at once? I “think” this is my ovaries being crampy but I haven’t gotten my period so I am not certain. I’m 49 and was hoping it wouldn’t come back. But I’d rather this be that than something more sinister
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DiV I know this probably won't help. But I had a CAT scan about 4 years ago and they found a nodule on my lung. 3 different doctors told me it was probably cancer. Pulmonologist said it was too small to do a biopsy so he ordered PET scan. It didn't "light up" as cancer. 4 years later I still go once a year and get a scan to see if it has grown. 4 years later, nobody has told me what that nodule is...but the Pulmonologist says it's not cancer and it hasn't grown even a little bit. Remember, 3 doctors said with certainty that it was cancer. They were wrong.
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rdeesides - I finished the IV chemo in Dec and I still haven't gotten my period back either and I'm 41 but I'm also on Xeloda now so I don't know if that has anything to do with it or not. I was having some aches like at the very bottom of my stomach mostly on the right and I asked my oncologist if it could possibly be my ovaries aching and he said it's possible. Well it bugged me so I set up an appointment with my Obgyn and she had me do an internal and external ultrasound and everything looked good. I do have back pain but its not at the bottom of my back it's like midway. The back pain as well as my stomach started bothering me while on Taxol. My Obgyn also said my ovaries could just be aching from being thrown into menopause. Hope this helps.
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kmajor,
Thank you this sounds similar to what I’m feeling, except the back pain is lower. That could honestly just be due to the way I’ve been sitting while working. I will follow up with my PCP when I have my yearly appt, which will be soon.
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ALHusband hi, my mass is the size of a walnut. I'm praying it's benign.
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Blast, DiV! 😥 It's got to be torturous having to wait over the weekend. I hope that your report is favorable.
Lyn
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DiV: sending lots of good thoughts your way. So sorry that this is happening to you.
Redeesides: I was 49 when diagnosed and treated. Onc said my period would never come back and it didn't (58 yrs old now)
Nifer: Chemo Brain is real. I am almost 9 years out and I still think that some of my ongoing forgetfulness, searching for names and other details are due to the effects of chemo.
Hello to everyone. I am so glad that this thread continues to be such a great support for those in all phases of treatment. I know it was a God send for me and still is!
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Will try and keep this short..BC right breast..mastectomy Er+ HER -
Arimidex 5 yrs then five yrs in remission.
Virus 7 weeks ago had chest xray..lung nodule..now post scans and lung biopsy and then PET..mets to lungs sternum and mediastinal lymph nodes On. ibrance and letrozole bit over a week
PET also showed nodule on left breast..Biopsied week ago Fri.Saw results on pt portal today triple negative.Dr said if it not ER + and Her 2- Treatment might change ..with this in mind she gave me appt this Mon..any thoughts anyone have this???Ibrance thread sent me here..TY
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NavyMom- thanks for checking in. Good to hear from people so far out. I’m hoping my period stays away!
LakeWoman - I think you meant to post on a Stage 4 thread? No one on this thread takes Ibrance I don’t think since we are all Triple Negative
Rebekah
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redeesides ty for your post..I am now between rock and hard place..RT breast mets to lungs sternum and mediastinal nodeS but now independent of this they found triple neg in left breast .no mets..Just learned the TN part today via pt portal I was here to learn from you with triple negative diagnosis..even though u dont take ibrance.
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Got it! TN is really treated with chemo so i would think you would get that and they would keep you on the other stuff for the hormone positive part. I’m sure others will have more thoughts. Sounds like you have been through a lot. Hugs.
Rebekah
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Awe ty so much.. it was confusing to me..even as old RN so happy you said Got it meant a lot to me..TY..
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thinking about you today, DiV
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Hi fellow TN's! I'm just catching up on the thread as I haven't been around lately. I don't think that I can recall everybody individually but good luck to those of you awaiting results. That's so hard. Happy for those of you with good news! I can say that I still (almost 6 months post chemo) have foggy brain occasionally but it is getting better. I'm 48 and briefly thought my ovaries were starting up again at one point but it never happened. Since feeling subsided after a week or two, I never explored further.
I took about two months post surgery to fill one tissue expander then started radiation in late Feb. Mentally, I found rads pretty challenging emotionally. Objectively, I know it wasn't as bad as chemo but I think that I'm just tired of treatment and want my life back. I finished rads right before Easter and my skin is finally almost healed. I had very close to pcr but not pcr so my husband and I decided to pursue opinions at my medical center and elsewhere to make a decision about next steps. My MO does not recommend Xeloda and is open to a clinical trial although it turns out that I'm not eligible for the TN immunotherapy trial here. We have one appointment a week for the next 3 weeks. I'm hoping to get some clarity about further treatment and find out about any potential trials that would be a good fit. We shall see.
Best wishes to all of you dealing with whatever is going on in your life!
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Flynn,
I'm not sure why you wouldn't be eligible for Xeloda, but my MO is running a clinical trial using Keytruda for non-metastasized TNBC to see if it helps us. DM me for more information if you like. Thank you for your info about what you've been through, how long it took, your feelings, etc. My mastectomy with axillary node dissection and TE is Friday, April 27. I got considerable reduction but also not pcr as well.
Paula
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lake woman this is a great place for TN information. Many are early in their diagnosis, on treatment etc. there are many of us that are past treatment but share the ZtN diagnosis. I hope others chime in that have contributed to this thread for a few years. TN is very different from ER plus. My first bcc was ERPlus, this most recent was TN.
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DIV thinking of yo
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(((DiV)))
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PaulaAtlanta: I had A.N.D (17) with my mastectomy,too. Wait a few weeks to shave your armpit post-op. I had horrible burning pain for many, many days after shaving. To this day I've had no problem with lymph edema. I do wear a compression sleeve when I fly. Put it on one hour before and take it off one hour after I land. I still get Zinger pains in my armpit every now and then. Some are bad, others not so much. They last no longer than a minute or so. And Don't allow anyone to take your Blood pressure, start IVs or labsticks on that arm. And I wear gloves when doing yard work. I'm very protective to keep that hand/arm from any infection. So Far so good.
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jenjenl - hope appt went well.
Div - hugs.
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Thanks Valstim52.As you know..
My right breast Er+ her2-..mastectomy 10 yrs ago..then from that six weeks ago mets to lungs.and am on ibrance and letrozole..Yesterday MO appt.on biopsy of left breast.nodule seen on PET scan.Yes it is TN ..very small 1.1..I am being scheduled for a mastectomy..Not until she gets pathology report of that will she decide if I need chemotherapy. For now staying on pills!!! while I recover from surgery..So I will check in here if I have any questions regarding TN..ty so much..
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Nifer, I'm 13 months past my last chemo treatment and I still have brain problems. I've stopped calling it chemo brain because it is more than just fogginess or forgetting words, names, etc. I had a thorough work up by a neurologist who specializes in chemo induced brain problems and learned that my two weak areas are processing & attention. I scored at the 6th percentile. The doctor suggested doing 6 specific Lumosisty games. I did those daily for 3 months but I didn't find it to be helpful. Many people never experience chemo brain damage and many bounce back quickly, like VL22 who is recovering after 100 days (such good news!) I think I'm just stuck with mental limitations. What's weird is that I get associated sensations in my face--these are not bothersome, just interesting. If I'm in a situation with a lot of visual stimulation and information to process--like in an Ikea store--my brain gets overwhelmed and I can't think through which silly product to buy. But also, my forehead, lips or cheeks go numb. Last week I was in a Container store with DD, helping her get closet items; my whole face went numb and I got so overwhelmed I almost fainted.
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lakewoman This site has helped me navigate the treatments for TN but I don't feel educated on the topic. There are many people on the forums who understand the research. I mostly know about TN from my own experience. One of the first things I learned after my diagnosis is that the world of breast cancer is much larger than I'd thought. I didn't know there were so many variations and so many differences from individual patient to individual patient. Reading the pathology report was when I started learning the vocabulary.
DIV I think of you every morning when I put on my bra. I remember your post about techniques you figured out for getting yours on, after your surgery. You are my inspiration.
Regards to everyone as you travel your ups and downs.
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To all with good test results congratulations. For all awaiting results you came to the right place. You will find encouragement and knowledge from others here. This site has helped me alot over the past year. I see oncologist today. Dreading hearing what he has to say. I've been experiencing elbow and knee pain. My elbow hurts so bad I have difficulties picking up coffee cup. My knees hurt so bad if I bend down I moan getting back up. Praying it's not symptoms of bone cancer.
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DIV - Thinking of you.
Rebekah
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Saw oncologist today. Biopsy was positive for breast cancer mets (metaplastic spindle cell) to lung. Get pet scan 25th and see my radiologist 26th. Oncologist isn't sure if surgery is an option. I had part of my left lung removed during amputation. Oncologist is waiting on my thoracic surgeon to get back to him. So for now the plan is to have radiation then chemo. I just got me hair back now I'm going to lose it again.
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DiV I’m so sorry to hear your news. I hate stupid cancer. I hope that you get a good plan in place so that you can be free of pain and getting the best treatment to stop those mets in their tracks. Sending love, light and hope to you that you will feel better soon. X
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DIV, I don't post often, but tend to check in from time to time. I am sending you love and peace and wishing you only the best.
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Oh DiV, - that is SO UNFAIR!! I HATE HATE HATE CANCER!
Stay strong and positive, - and make sure they give you something to relieve the pain! Add me to your list of well wishers and friends offering our support in any way that we can.
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