Podcast: Hope After a Triple-Negative Diagnosis
Comments
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Wow caperry, just noticed your stage II. Glad you are done with the worst of it. I'm up again in the night but not really sick. Just weird. Gonna try and work anyway tomorrow/today. I'm using sick time pay quicker than I can accrue it. Don't want to "give" away vacation time if I can help it. Plus catching up after three days off is a bear. I guess I'll read until I fall asleep. If this is as bad as it gets for me, I am extremely blessed. Half way through, yeah.
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Hi was diagnosed in 2000. Now recurrence same breast. Anyone had recurrence in same breast? In 2000 tn stage 1 neg nodes brace negative tumor was 1.6cm. Idc
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@Fern-My breast surgeon called it stage llb. I'd have to go back in the 8 pages of handwritten notes and drawings she gave me to remember why! Neo adjuvant chemo was great for me because I had a breast biopsy right away (on my 49th birthday!) and we knew it was TN. The day of the battery of x-rays I had also included a lymph node biopsy that revealed 2 lymph nodes were affected. At the time of surgery, tho, my pathology came back clear. This crap still scares me half to death! Knowing my chemo worked helps a great deal on my scary days. I hope a little sleeplessness is the worst of it for you! You are in my prayers.
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My needle biopsy was definitive, but I can't remember if the triple negative was discussed then. During surgery the sentinel lymph was deemed negative - but pathology showed up a .8 micrometastatic. They chose not to take more nodes, or do radiation. So, this chemo IS the fix for reducing recurrence rate. Hope it works.
From yesterday, a report: I went to work yesterday. Felt kind of "out-of-body" for most of the day, which wasn't necessarily bad. That horrible metallic taste in my mouth started around lunch, and my normal addicted to diet coke taste when haywire and I couldn't drink the diet coke. By end of work day, it was obvious I should have gone home earlier, it was all I could do to drive home. Everything hurt, visual blurriness. My sweeter-than-life hubby had dinner ready, and a pain pill . . and so the evening was just reacting to all the pain . . joints aching, metal mouth, nothing tasted right . . . took meds to combat pain and discomfort, took hot bath, and then slept relatively well with meds on board, and this morning feel near normal. I will have to get used to the accumulative effects of this chemo, I fear. Is that everyone else's experience? Once the steroid wears off, then the "symptoms" start? For how long?
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The AC didn't hit me until the 4th and final. Everything hurt. Two days after was X-mas Eve, and I couldn't even stand to be lightly hugged! And cry? OMG! Then I switched to taxol, and it was flu symptoms 24 hours after. I had mitts and a neck wrap you can heat in the microwave and an electric lap blanket. They were my best friends. It was also Jan and Feb in Michigan! The chills killed me and the body pain came second! Neulasta added to it, of course. Each time I gained another day to be miserable. Mind you I lived alone! I was all I had for the bills, etc. I couldn't afford to miss work. 4 days a week as office manager at a doctors office and 2 days at a small restaraunt! And here I am!! It'll be 2 years this Oct since my dx. Life is good and God is great!
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Well, night 5 after round two and once again sleep is a problem, even with meds. I guess my normal sleep is 6-7 hours a night, have always had trouble getting to sleep, enjoyed staying in bed in the mornings . . . the past 5 nights I am up at 3 . . . some nights went back to bed, some for a moment . . . been up since about 4 today . . . with the naps in the day I think I'm sleeping too much? I welcome the fatigue if I could actually get some sleep. The metal mouth is gone, the knee pain was considerable yesterday, aleve seemed to help the most, and I took an extra claritin - I take those every day of my life for seasonal allergies (now it's beginning rag weed season). . . I do have THE MOST wonderful and supportive husband a gal could want . . he is not a problem in ANY way at all. Here's hoping that today will be better than yesterday - although, in all honesty, this is not horrible, and I am not greatly suffering - sounds like I am having a easy time compared to most. Thanks for listening.
Caperry - I am so sorry you did this alone . . I certainly could not exist without my great hubby. . . this whole experience has assisted me in knowing what a special man I live with . . . I am so blessed.
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Fern-I am so glad you have a supportive hubby. I was given Benadryl during my Taxol regime. Only during, didn't need anything after. I feel I was very lucky in how I responded to and reacted to my chemo. My mom is a lymphoma survivor and she handled hers well, too. Maybe she gave me good chemo genes! The doctor I worked for said his mom tried everything to get her sleep during steroid tx and none of it did anything. The only thing I tried was Lunesta. Nothing. I was ticked! I'm ugly sleep-deprived! I hope you sleep soon!
@5owens-you are in my prayers for your biopsy tomorrow. Let's have some good news, hey? Stay strong no matter what-you can do this. Look at all of us survivors just on here!0 -
@the5owens I had two papallomas removed from my right breast the same day I had cancer removed from my left. I was terrified waiting for those papalloma biopsy results. The implications were huge should they be malignant. They were't. There's still another one in there that we're going to watch. No one made any suggestion to me regarding a double mastectomy unless brca came back possitive even with triiple neg. I'm brca neg. So, me and my lumpy breasts are going to venture forward. Chemo starts Thursday. I hope your biopsy is negative too!
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More good wishes coming your way 5owens...
laurag...omg. I hate lumpy breasts!! Glad you are doing ok
Caperry...I danced down the hall this a.m. after a good nights rest w/out any wake up. Waaaahoooooo. Worked today. Two alleve got me through the knee pain I have developed. Guess it's that. Haven't done anything physical besides walk. Gotta be a side effect.
Going walking now.
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Ladies amazing news...went in expecting biopsy and the doctor doing the ultrasound said that what was showing on MRI and us were normal lymph nodes...I got the all clear on the left breast!!! Yay!! Thanks for thinking of me!!
Steph0 -
Well, two great big WOOHOOs going out right now!! Yea Fern slept through the night and double yea Steph got great news!!! I am tickled pink, ladies!! Prayers work and we're all proof!!
Christine0 -
Wahoo 5owens. God is present among us, I can personally confirm that presence in my life.
Having pain, day 8 round 2, and minor muscle spasms. Side effects? Advice?0 -
Fern I had muscle spasms too, but quite a bit after I was done. Warmth was the only thing that helped. Electric blanket, neck and hand wraps you heat in the microwave were my saving grace. I was really off meds except Arthritis Strength Tylenol I have taken for a long time for arthritis in my hands. Maybe that helped! I'm glad you slept and maybe things will look up. Praying for you!
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Thanks caperry79. We have a hot tub and it has been a wonderful help.
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Netty46,
There are several us of with local recurrences in Tri/Neg land. It happens. Please PM me if you have any specific questions.0 -
I have my lumpectomy surgery scheduled for Friday, September 7th at Medical City Hospital in Dallas!! Ready to start this fight!!
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I BOUGHT ANOTHER "FIGHT LIKE A GIRL" T-SHIRT from Hallmark today. Bought one for my granddaughter as well because she keeps "stealing" mine. . . . BE STRONG. GOD WILL BE WITH YOU!
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Steph I wish you did not have to travel this road. Keep praying, laughing, talking, and crying. Don't let anyone tell you not to cry. It can be so important in your recovery. Talk talk talk. Telling your story helps you get through it and over it(no, I am not over it yet!) and lightens your burden. Tell everyone how important mammograms and self exams are. No, mine was not found either way. God showed it to me, I swear. I laid down in bed to sleep and had an odd hot pain in my left breast. I grabbed it and laid my pinkie, ring, and middle fingers on it. I instantly knew. But if I would have done my self exam that month, I would have found it. I tell everyone in earshot!
You are going to find strength in yourself you never knew you had. It is there. I will be praying for you. Keep smiling and FIGHT LIKE A GIRL, right, Fern?
Christine0 -
Steph. I agree with caperry. I was a compliant, non-confrontational, quiet gal until Bc. Now I'm fighting mad. And enjoying my life every day I can. I'm day 30 of chemo And today is day 9 of round 2. I'm over the hump and so now I have a relatively normal 13 days before round 3.
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Thanks ladies and I will Fight like a GIRL!!
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Ok just to start CANCER SUCKS!! I think I have a handle on things then bam all goes to hell!! Today I was so tired I couldn't keep my eyes open....mind you I am at the beginning of this and haven't EVEN started treatment!! So what gives?? Also, I am MAD!! I'm mad at the world and everyone in it. I'm not going to ask why me cause why anyone? Does God not know that I have 3 kids who need me? I find myself taking my anger out on them...snapping at them and my hubby so I have retired to my room for the evening!! I am not fit company for anyone not even myself!! I am mad I don't want to do this!! I want to wake up and all of this just be a nightmare!! I am having a huge pity party and I even feel guilty about that!! And another petty note if one more person says "it'll be alright" I may punch them in the face!! I know they mean well but no one knows if it will be alright!! Its like they just want to shut me up about it!! Okay that's all for the night! I needed to vent and this is the only place that really seems to understand and listen!! I hope I wake up happy tomorrow!!
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Oh Steph! We all did just what you are doing. You need to let yourself have your pity party so you are ready to fight the fight of your life! Get it all out of your system so you can get ready for positive thoughts. You will need a positive attitude to get thru this. Anger will slow your healing. Scream, cry, throw things, do whatever you have to in order to get it all out! Let your husband know what irritates you, like idiots telling you it's going to be alright. The people closest to you need to protect you, and that is one way to do it. And speak up! Ask the next person how on Gods green earth they know that? It'll make you feel better, I guarantee it! It's all about you right now. You'll find your strength when you need it. I wish I could be there to give you a hug! I had no one all this time and now I have you girls. Other cancer survivors get it, so I do recommend finding a support group or a new friend! It is nice to talk to someone who has been there. You are in my prayers and I'm sending hugs!
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Steph, I agree with Caperry79 . . . God can receive your angst . . . He's a big God, has big shoulders - - let Him have it - it's healthy. My FIRST, VERY FIRST reaction to the diagnosis at the surgeon's office was ANGER . . . my hubby looks at me walking out that day and says "so . . . " and I just wanted to scream . . . I was so angry . . . then again when they leveled with me to suggest chemo . . . once again, ANGER . . . This is the time to be angry - get it out, do what you need to do. I walked A LOT OF MILES . . . I filled my mp3 player with music I like and walked and screamed on the inside and expended energy. Find what it is that will deflate this for you. Take a sleeping pill and get some good rest. Laughter is also a good way to expend this energy - - so, here's some funny things about getting old - of course this does NOT apply to you . . . it does, however, apply to me!
I very quietly confided to my best friend that I was having an affair. She turned to me and asked, 'Are you having it catered'? And that, my friend, is the definition of 'OLD'!
Reporters interviewing a 104-year-old woman: 'And what do you think is the best thing
about being 104?' the reporter asked. She simply replied, 'No peer pressure.'
I've sure gotten old! I've had two bypass surgeries, a hip replacement, new knees, fought prostate cancer
and diabetes. I'm half blind, can't hear anything quieter than a jet engine, take 40 different medications that make me dizzy, winded, and subject to blackouts. Have bouts with dementia. Have poor circulation; hardly
feel my hands and feet anymore. Can't remember if I'm 85 or 92. Have lost all my friends. But, thank God, I still have my driver's license.
I feel like my body has gotten totally out of shape, so I got my doctor's permission to join a fitness club and start exercising. I decided to take an aerobics class for seniors. I bent, twisted, gyrated, jumped up and down, and perspired for an hour.. But, by the time I got my leotards on, the class was over.
An elderly woman decided to prepare her will and told her preacher she had two final requests. First, she wanted to be cremated, and second, she wanted her ashes scattered over Wal-Mart. 'Wal-Mart?' the preacher exclaimed. 'Why Wal-Mart?' 'Then I'll be sure my daughters visit me twice a week'
My memory's not as sharp as it used to be. Also, my memory's not as sharp as it used to be.
Know how to prevent sagging? Just eat till the wrinkles fill out. It's scary when you start making the same
noisesas your coffee maker. These days about half the stuff in my shopping cart says, 'For fast relief.'
THE SENILITY PRAYER :Grant me the senility to forget the people I never liked anyway, the good fortune to run into the ones I do, and the eyesight to tell the difference.
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Caperry and fern,
Thanks for your words of wisdom and caring!! Thanks for letting me vent and helping me laugh!! Xanax on board so night night!! Tomorrow will be a better day!!
Steph0 -
Steph, this is my first post and I hope I'm doing this ok. Your feelings sound like my own when I started my chemo journey. I was going kicking and screaming to chemo - total terror!! Why ME!!! This always happened to other people - not to the girls who did all the right things like faithful mammos and gyne visits - didn't drink(much), never smoked or did drugs and breast fed our kids faithfully! But it happens to too many of those girls and I was SO mad and hurt and terrified! So I know, I know! Hang in there and remember there are lots of us around to support you!
Hugs!
Karen
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KariSue - I agree with you - - this isn't FAIR . . . and RANTING is a good thing. I have ranted . . but find it better for my mental health to try and stay positive - being thankful for having only Stage 1 even though it's triple negative . . . being thankful that I can work 2 of the 3 weeks (so far) of chemotherapy . . . being thankful that my husband is such a wonderful servant . . . and looking at the bright side of things . . . I no longer have to wear uncomfortable/poor fitting bras . . . . it takes 5 seconds to "DO" my hair . . . I am spending no money on hair care products . . .
I was looking forward to being slightly nauseous so that I could lose about 10 pounds - instead in 2 rounds, day 36, I have gained 7. So, I guess, I shall "spin" this as thankful I'm not nauseous!!!
TRY to smile . . . We are all in this together . . . but if you need to RANT - GO RIGHT AHEAD! I might be right behind you - - - today seems to be a good day, in which I can be positive.
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I'm just new on this board. Just diagnosed Triple Negative and BRAC1 Positive. On my 3rd session of AC and Taxol to follow. I'm not sure if I will do Taxol after reading a lot of long-term side effects of it. Any advise would help. Thanks
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I'm happy for you.
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Precy I did 4 dose-dense rounds of both AC and Taxol. Not sure which side effects are scaring you, but dying from this crap scared me more than anything. I was 49 at diagnosis, so is that a factor for you? Discuss it at great length with your oncologist. This is their specialty and they deal with it every day. Give me some specifics and I'll let you know if they've popped up yet! I'm about 18 months post chemo.
@Fern-I gained, too! I've lost it all now, but I was a chubby chemo patient and happy not to be throwing up! Silver lining, ladies, find your silver lining. I had a second chance at good hair, and I'll be 'perky' for the rest of my life!0 -
caperry79 - I love your silver linings! I am still in the stage of wondering what will happen next...wondering if FC is growing somewhere and I can't feel it. I hope I can soon settle into my "new normal."
precy - I had DD A/C x4 and Taxol x4 and my last Taxol infusion was 6/20. My fingernails and some of my toenails are a mess but are growing out. I have some slight neuropathy in my fingertips but I am hopeful that, over time, that will disappear. Which long term side effects worry you?
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