Calling all TNs
Comments
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Spica and Ksteve - huge congrats to you both!
Simple - my goodness, that is no way to spend the summer! So glad the fatigue is behind you and you're back to enjoying the activities you love.
Nettie - yes. I had the weird smells all through chemo. I would smell odd things that no one else could smell. I'm also with you on the aches and pains. I have a couple that are sending me into a tailspin of worry right now, but I also have a bunch that I know are common post chemo stuff. Like Meadow, I feel like I've aged 10 years and literally hobble out of bed every morning. My joints ache the most. I've heard from most women that it does get better over time, so that's what I'm banking on. Hang in there!
Bak - so sorry to hear about the Metformin. That has to be frustrating, but glad you were able to pin point what was causing the symptoms. Keep us posted on what your MO says.
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KSteve,
When I had my tattoos with Vinnie it was the beginning of a great turnaround in my body image and self confidence. Vinnie was professional and warm and I'm so glad I went against my PS's recommendation against using a "tattoo person". I hope (and think) you will feel so much better and prettier once yours are done!
Hugs,
Peggy
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Nettie - We're hear to listen and pray you feel better! Pain just plain stinks. I know a heating pad or ice pack sometimes alleviates my achiness.
Bak - I had a pinched nerve in my neck/shoulder and I was in so much pain for soooo long. I finally found a physical therapist who is amazing. She could "feel" which nerves to work on and has been manipulating them with deep physical tissue work. I'm uncomfortable and in some pain while she works on me but later I feel so much better and the pain is diminishing, finally! I suggest you ask around for a PT who knows how to work on nerves. I swear my PT can feel which one to work on, she's that good!
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yes the joint pain and achiness We all have it, on every forum I'm on. My chemo forum, rad forum, hair forum, lumectomy forum. Seems if you've had chemo you have joint pain and the morning stiffness...uh ya ya awful. I'm on metformin too and doc said give it 2-3 mo for ant SE to settle. Also thought I've felt increased joint pain since starting. Also started curcumin capsules. Integrative med doc said it was good to try. Decreases inflammation.
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Lisaj514 - I read a bit about curcumin capsules and like the idea of taking them. Did your dr have a recommended daily dosis and a particular manufacturer? You have to be so careful on getting pure ingredients and not fillers or preservatives.
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Hello to all my Tn sistas....popping in to "see" everyone.sharing this as I know you can all appreciate this. Today I took my only daughter to shop for her wedding gown. She is getting married in February. Just being there made me cry knowing all too well that 3 years ago there was a chance that I would never get to see the day that my daughter would walk down the aisle and said I do to the man of her dreams. She and I both got caught up in emotion when we found the dress. We cried and held each other while the entire shop both workers and customers came around and shared the moment with us. It was almost overwhelming. Just can't wait so see it when it happens for real and I get to see her and her fiancé begin their life together. This is life after Breast Cancer!!!! Full of moments that I will remember for the rest of my LONG LIFE!
Maggie
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Mags - SO HAPPY FOR YOU!! Big hugs
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Hi everybody, I just log in to say hi, and hope everything is well with all of you!
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Oh Mags.....that is a beautiful post...sniffle sniffle, where's that box of tissue? I can relate to it. I was going through treatment while my DIL was pregnant with my first grandchild. I prayed that I would live to be able to hold him in my arms. And when I finally did, I cried and sobbed with gratitude that my prayers were answered. Now he is four years old and the next baby is due in 3 weeks!
Wishing everyone peace and happiness.
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Mags, Beautiful story thanks for sharing it with us! So happy for you all.
Hello Jianchi!
Navymom, happy for you and the joy of grandparenting!
Have a great day everyone
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Hi Jianchi! Glad you popped in to say Hi! Hope you and your family are well!
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My wife had her regularly scheduled Onc appt today. 17 months from initial diagnosis. Not out of the woods yet I know...but I'm happy to report all appears well! Great Onc appt! Doc says, "I have looked at your records from diagnosis until now. I think it's time you start living your life and spend less time hanging around doctors." So, she will have another 3 month appt in December, and then go to once every 6 months! Doc also agreed to prescribe Metformin, which she had been taking anyway but needing to go to PCP for the prescription. This will take away the need to have to go to PCP for refills. Things are lookin up ladies! All the glory to God!
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Good news ALhusband!!
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ALH - Hugs to the both of you. 6 month appointment is fantastic! Go celebrate.
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Mags and Navymom, I love to hear happy stories like that.
ALHusband, hooray for another good check up. I look at my checkups as milestones.
It seems like the standard of care is going over to 6 month checkups for TNBC. I'm only slightly a little over a year out. After my first 3 month checkup, my MO made my next checkup at 4 months and then after that it will be 6 months. I'm at Vanderbilt. I know another patient with TNBC with a different doctor at Vanderbilt also has her on a six month schedule and she was diagnosed about the same time I was. At first, I was concerned about not going every 3 months, but I realized I can call anytime I'm concerned about something and they are very responsive. Having fewer checkups means a lot less driving for me since I live pretty far away from the Vanderbilt breast center. The way I look at it is that checkups don't prevent cancer recurrence.....hopefully, healthy living does.
Wishing everyone a great weekend. I know it's getting cooler in a lot of the northern hemisphere now. I guess it's time for us to be enjoying that fall weather.
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simplelife4 we LOVE the folks at Vanderbilt. If it weren't so far away that's where my wife would do her follow ups. We went there when she was first diagnosed and they were great. In fact if the local Onc hadn't agreed with Dr Mayer up there on treatment, we would have continued there. Luckily Dr Mayer sent her thoughts and recommendations, which had also been before the tumor board up there, to the local doc and he was in complete agreement...saving us a 2 hour drive each week.
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I went every 3 months for 3 years...then every 6 for two..at 5 years I am now to yearly visits...but I will still see a doc every 6 months..the onc..then the breast surgeon...I think the bs likes me..lol...he is a great surgeon and person...He graduated from high school with my husband so we have some connection there.....I just feel better seeing him that the onc's office for some reason....gives a great exam..and just really checks me out thoroughly..I just feel confident that if he says I'm good..then I am!
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Hi Everyone, I was diagnosed with TNBC one month after my 40th birthday. I've had a BMX and 3 of 4 TC chemo TXs (no rads needed). I will have 3 month appts for the next 3 years. I am curious to know what exactly happens at those 3 month doc appointments?? Is there a blood test, PET scans, etc.?
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Hi redheeledwoman, sorry to hear about your diagnosis. I was diagnosed at 42 and I'm one year out now.My onc is adamant about not giving me scans, bloodwork (to check tumor markers), or any test. He says he's following ASCO (Am. Society of Clinical Oncology) guidelines and that any test/scan/bloodwork is proven NOT to increase overall survival. In fact, he even went so far as to have me recommend other women not to request these from their onc since theses tests can give false positives (i.e. test shows you're positive for cancer when it's not the case), or not even detect recurrence, and can cause lots of anxiety for the patient awaiting test results. I'm also assuming these tests are expensive for hospitals. Instead he recommends that I just tell him my symptoms and report any chronic conditions.
I had a hard time swallowing that pill since so many of my bc friends do get tests and I like the fact of having something done vs nothing when going in for checkups. I've done my reading and I know my onc is following national guidelines. I was tempted to switch onc because of his philosophy, but for now I'll stick with him since he did find the best chemo treatment when the first drug wasn't working, so I know he is good. My suggesetion would be to have a conversation with your onc and make sure you feel comfortable with his/her protocols on follow-up appts. Good luck!
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Rednheeled woman - I just had my first follow-up appt at the end of Aug with my MO (after 5 months of chemo and BMX). My MO's position on scans is just like Superbody clearly detailed above about her onc. I will see MO every 3 months at first and will be discussing/reviewing symptoms. I was confident with his chemo treatment plan and the care I received, so I am comfortable to continue with him. I have one friend whose onc has different view and will be getting scans, etc.
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Check up at 3 mo out, scan at 6 months out from end of treatment. Like Seashore said, I am comfortable with this treatment schedule. I trust that my NED status is ok. But lots of docs think differently, and as all our cancers and situations are unique, we see many variations on follow ups
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Thank you Superbody, Seashore and Meadow for the info. I belong to a breast cancer support group who believes I should push for a certain blood test (cant remember the name of it). But, I'm not sure the women are TN. I think I remember my onc telling me there wasn't a blood test available and that I just need to report any symptoms that pop up. I'll get more info at a later date.0 -
I asked about scans and would have been granted them upon my request...I did not request them..on the premise that finding a small spot of whatever origin would require repeat scans...watching...etc...My onc told me that I was way to hyper to have to live from scan to scan...kinda funny really...but I took his advice and did not have the scans.
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rescheduled woman,
I just signed up to participate in some studies today with the Basser Research Center for BRCA. One of the things they are studying is the usefulness of these blood tests. At this time there is not enough proof that they are helpful. The idea is to check blood for isolated cancer cells before a tumor develops. The problem is all of us (even the healthy ones) carry cancer cells. Normally, our body kills them naturally. BRCA people tend to have a harder time fighting them off. 80 percent of triple negative gals are BRCA positive so I'm sure that will come up in the studies.
By the way, if any of you are BRCA positive, the Basser Center is the first of it's kind in BRCA research. Look into some of the studies they are doing. Many of them are over the phone and don't require much if any travel, just family surveys. The main goal is to revolutionise breast and ovarian cancer genetics to the point where there may even be an immunization of sorts. They are doing some amazing work out of the Abramson Cancer Center where I go in conjunction with Fox Chase Cancer Center, both out of Philly.
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Hi TifJ, thank you! I am doing alright. Life is back to normal now, and I just hope no hiccups down the road. How are you doing? All the best to you and your family!
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Hi!Jan59-Did you stop metformin for awhile? Did your headaches stop? I did have slight headaches also, but not bad.
So glad to hear that everyone is doing so good. I do still get the tumor marker test, as when I was first diagnosed my numbers were a bit high. They then decreased as my tumor shrank. My doc thinks the markers are reliable for me. It does give me anxiety though.
Titan- that is great that you are at yearly appointments!
Mags-So happy that you get to experience that with your daughter! Very touching. I don't have children, but my niece got married this summer. I saw her as she was getting ready and we both started to cry, she was so beautiful and happy. I then, of course, cried as she walked down the aisle. Feeling so blessed to be there and see her marry a super sweet guy! These moments make the fight so worth while.
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I fall in line with many on here...no blood tests or scans. I've come to peace with it bc when I was having an issue he scheduled a scan. My only problem is that I didn't have a scan when i was done with treatment only before. I wish I had one after tx to confirm everything was good before.
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No scans or blood tests here. Follow the two week rule. It makes sense, not that it is easy. I know if I have a concern my family Dr addresses it aggressively and promptly. I did have a ct post treatment. Almost 5 years out and doing great! I have also been involved with the Basser Research Center. If you are BRCA 1 or 2 positive I would encourage involvement. I am not close, but was able to contibute familial information and DNA. I hope it helps.
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Radical: BRCA studies sound interesting, so great of you to participate and help out ladies in the future. Just want to point out, though, that 80% of TNs are not BRCA+. However the converse is true, which is what I think you meant: A very high proportion of BRCA+ ladies are indeed TN, perhaps as high as 80%.
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I had blood work done this week, but I think my MO just wanted to make sure my levels were all ok. I finished chemo three weeks ago. He also ordered a CTScan last week. I got results today. All good. He was re-checking my lungs because I had nodules show up on my PET scan last March. They were unchanged, so he thinks they are scarring from my bout with pneumonia. I will see him again in two months, then every three months for awhile. He said he wants regular blood work, but no scans for awhile.
Hope you are all doing well, lilyrose
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