Starting Chemo September 2015; join us!
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Hi tkemp!
My personal belief is that with God's help, you will be released from crippling anxiety at some point. When, I can't say. I began having panic attacks this summer (probably not a coincidence that July was my first and only mammogram and biopsy, leading to the DCIS dx) and was so frustrated that it seemed to reach a breaking point after the worst of treatment was over (technically, I am still being treated since I am done with the Afinitor in May of 2017). It was debilitating, wondering if the cancer was spreading, if it had already spread, if all this terrible treatment had done a thing, if I would live to see my children start kindergarten.
God said to me very clearly, "When it is your time (to die), you will be ready." It was at that moment that I stopped going down the rabbit hole all the time. There are still valleys, but they aren't as long and low as they were. I know God did not promise me that I am cancer free. He also didn't promise me that I won't be killed in a car crash tomorrow, terrorist attack next month, or heart attack next year. But he did promise me that I will be ready. I stand on that promise each and every day. I'll be ready and I'll be going home.
Wishing you peace, sister. This is a terrible disease for the mind.
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Hi Tkemp
Flashback city here too! A year since diagnosis, a year since first operation a year since second....it will be a year on Saturday that I started chemo. Next week I have follow up tests. I think the flashbacks and anxiety is a very normal reaction. Fall is your favourite season and cancer stole last fall from you dont let it steal any more xxx
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Cajun, Yes I still have my port ( I will until my herceptin is done in the spring if all goes well) Can't wait to get it out though
I have a reconstruction apt coming up and a surgery to hopefully get my expanders out!As for the hair I got a slight fro. It was curly then as it grew out it turned more wavy. As for the color I got more grey hair so i dyed it with henna a few times. It's a pain in the ass but it works chemical free.
Congrats Twiggy on the last herceptin! How has you focus at work been? mine's been bad so I am considering some meds
Congrats Grey on getting through treatment - I may be echoing the others when i say I'm glad you stuck with it!
Tkemp, yes over emotional and anxiety when my 1 yr anniversaries of my DX date, surgery date, and even first chemo date came around. Little PTSD is totally normal.
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Thank you everyone! I still feel fearful because I couldn't finish chemo- I knew I did the tough stuff - AC but was taken off after 4 taxol treatments. My MO said it was because the research said that chemo may not helpful in my case. My Oncotype DX test only showed a 1 percent difference between tamoxifen with/or without chemo. He also gave me some research that stated that Her2-, ER+ tumors did not show a statistical benefit from chemo- but I knew of many women getting chemo who had the same type tumor as I. Even some of my MO's patients were getting chemo. I am still recovering from radiation therapy. I have some raw areas but my RO got me through it. It was hard and I am still having major problems from the radiation. The fatigue just keeps coming. Even though I am exhausted, I can't sleep. I worry so much about recurrence- it adds into the depression from the Femara and unfortunately I have people who add to my anxiety, making my PTSD out of control. How do any of you deal with the fear of recurrence?
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I do not post regularly and I am a month ahead of you all having been diagnosed for the 4th of July 2016 or there about. I finished taxol and AC by December and took the breast conservation approach. My conversations with my oncologist and breast surgeon were night and day and I did not follow my MO's advice for mastectomy. I am not more or less worried about recurrence. My surgeon explained to me multiple times that my overall survival was the same with breast conservation ( lumpectomy) right and left side right side stage 3 and 7-8 axillary lymph nodes removed. I am triple negative. I did not have the mastectomy which was against my NY C MO and breast surgeon here in NYC.
I did maximum radiation to right breast after lumpectomy. Now I have a large hard Seroma. 3 docs looked at it. No tx yet waiting for my follow up mammogram in Michigan next week.
By the way, I am 2 months late already for the mammogram. Same old story that got me into this soup. No time ever for myself, delays in taking care got me here.
I did my surgery at Univ of Michigan because my daughter is an MD there. So my risk of recurrance is higher than if I did the mastectomy.
It has all been terribly confusing to get two completely different recommendations. But I am satisfied that mastectomy was not for me right now.
I am on my 4th cycle of Xeloda. New treatment approved for triple negatives.
Anyone else taking it?
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El Tigre, my focus is better but still not great. I'm having a difficult time getting all my normal work done and working thru the daily issues that pop up which used to be no problem. It's frustrating! Can you get disability for inability to think? #joking/notjoking
Greyt, I too am consumed with the fear of recurrence. I wish i could get my mind off it.
Tomorrow is my one year anniversary of starting chemo. I think it's going to be a tough day for me. While i am grateful for medical care, BC and its treatment has taken so much from me mentally and physically.....
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I finally bit the bullet and went to get my hair trimmed for the first time since diagnosis. (Not counting having it buzzed to less than 1cm to stop it from hurting while it fell out from chemo). Instead of my old hair stylist, I went to one of the women I've met through our local bc group, thinkng she if anyone would understand how this could be traumatic, and would listen to me and not chop off a ton. Yay! She only took off what I asked, no problem. And she said she gives a 10% discount to our bc group (as does one of the local lingerie shops which carries a good selection of prothesis bras
). Now that the ends are gone in the back, I can see that yes, the new growth has a lot less gray and more color (all first growth was white/gray). I left the curly white bangs for now bc that hair hadn't grown that long yet.Yesterday I had blood tests and an ECG in prep for my cardiology consult (and ultrasound ejection fraction measurement bc Herceptin) then senior oncology consult (1-yr check-up) and (hopefully) third to last Herceptin injection the day after tomorrow, Thursday. Despite trying to remain cool, calm and collected, I'm afraid I'm freaking out a bit. Worried that if I tell the truth about the months of diarrhea and abdominal pains and headaches and tinnitus and the newer extreme tiredness, they'll say I'm too old and decrepit to get any more treatment and dump me
Oh well, nothing I can do except wait and see.I'm hoping this thread is getting quieter because people are feeling great and getting on with their lives
Wishing everybody a great week
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Hello Tessu
Nice to get a haircut isnt it. Every four weeks I get the ends trimmed off and coloured its starting to look nicer it makes me feel better/happier.
I understand how nervous you are, we all do. Scans and tests will make us all anxious its only natural. Tell your doctors all your sumptoms they've heard it all before. Im sure younger people have the same symptoms these are powerful drugs being pumped in. They may also be able to give some help with releaving symptoms.
Dreading my mammogram this morning my poor boob retains so much fluid its painful to touch let alone squeeze!
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Hi Ladies
I am just checking in. I appreciate you gals that still post. I share many of your feelings. I feel like I am struggling to get past the treatment phase in my life and back on steady ground .I had an interesting 1 year followup with both the gynMO who did my hysterectomy and my breast surgeon. so he immediately starts running tests for tumor markers for ovarian cancer because of the PALB2 gene and wants to screen me every six months for who knows how long and this is with my ovaries out and all. then my BC comes in and basically feels around for a few minutes and says "your all good" I ask her about tumor markers and she told me "there are no tumor markers for BC" She also said that because my tissue is on the outside of my chest wall that is where she would feel it and if it makes me feel better I can come back each year for her to do a physical exam and reassure me but beyond that ......
It was wierd to say the least.
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glad to see the posts from cinque, tessu, eltigre. Excercise guru, twiggy, cajunqueen, Minnesota Lisa ( not lately
Iknow some are missing please forgive.
You are friends to me.
I am 2 months ahead of you all with Dx July 2015. Got my chemo curls everybody likes them but now I am taking xeloda for triple negative. You all have been taking those aroma tase inhibitors etc which sound horrible. The Xeloda is mild compared to hard chemo taxol and AC.
I still worry about memory loss keep loosing my car. I left a rental car in a garage in Florida after my daughters wedding in May for 3 weeks and completely forgot I rented it! I had two other recent car related brain blackouts one just yesterday. Took a cab home when I drove to work and parked my car in the garage at work.? Went home and could not remember that I drove and parked the car. I have been using cabs here in NYC because I really wake up discombobulated in the morning and do not feel like I can drive even though it is just about 2 mile to work. I am fortunate to have a garage at my house and a garage at work. A blessing because I am in the Bronx less expensive than Manhattan . But every time I black out on the car location I feel like crying.
I should walk to work but too tired and now I have hand foot syndrome from xeloda on top of residual peripheral neuropathy from taxol and AC. Too annoying
Any ones know an answer for comfort shoes?
I am only happy barefoot and with my feet about 4 feet up in the air
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I used to love being barefoot with my legs in the air....for other ressons ☺ sad to say breast cancer killed my sex life...I just dont feel the same...I just dont feel sexual. Probably too much info there.
I exercise every day was really hard in the beginning but has helped with all sorts of issues. Maybe start with a short walk....I know its hard but it is truly worth the effort. Hope I dont sound preachy...it may help with feet issues.
Ive started writing things down to help memory issues...I think our brains are simply overloaded....I do think my memory is improving.
Hang in there.
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Well I went for my mammogram Tuesday, 6 mth bilateral and they did 3D and came back and got me for more pictures on opposite breast and then an ultra sound and then a biopsy. I am waiting on results from the biospy........ I am completely physically and mentally drained. Prayers please for a good outcome.
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tkemp67 you are in my thoughts and prayers --- hope this will turn out to be just a scare and nothing serious ((((hugs))))
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tkemp67
what an emotion Rollercoaster!!!!!
I am sending Internet hugs ans prayers your way. I hope they give you the results quickly and that the news is good
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oh no tkemp. That sucks. My mamo in July came back with additional views on my lumpectomy breast. It turned out to be fat necrosis and I have to go back in Jan for a repeat. I wanted a biopsy done but they said nothing to biopsy since the breast was still healing from rads. Seems I had my mamo too soon after rads. They like to wait more than 6 months post rads to do a mamo and I was only 3 mo post rads
I will keep you in my prayers for a clean result. You don't need to deal cancer crap again so soon.
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Shopgal,that is interesting about the rads and mamo timing: I didn't know that. I did have my first mamo in July, about 6.5 months post rads. It was stressful but turned out fine. Wishing the same for you tkemp!
Tessu I just had my first hair trim and also just about at the one year mark from starting chemo. My hair is super curly now, which it was not before. The trim was a bittersweet experience.
Sending hugs and good wishes to all.
Octogirl
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Editing out this past comment, apologies, meant it for another thread.
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Yesterday's 1-yr check all clear, and cardiology approved continuation of Herceptin, so I got my third-to-last dose. Yes I did get switched to a different, much better, senior oncologist who didn't talk down to me, who actually seems to care, and who took all my SEs seriously. Ordered more tests to make sure all the stuff bothering me IS just SEs and nothing more serious. I forgot to tell about the throat pain I've had for most of the summer, so I "splurged" on a private ENT, who saw inflammation with the little mirror and said it's reflux --- not more cancer, or a fish bone --- and wrote me stomach acid meds. So I should be jumping for joy. But instead I've been fighting tears all day. Yes, I've been outdoors to appreciate the unusually vivid fall colors, and I've been playing with my dear elderly dog, and I've been a good neighbor bringing apples from our yard to neighbors who don't have apple trees --- and everything else I can think of to try to cheer myself up. But I'm just emotionally drained. This whole past year has sucked. It's been awful. BC won, it's all but broken me.
Hoping if I can finally get a better night's sleep tonight, maybe tomorrow will be brighter.
F*ck breast cancer and all the crap it's done to me and to all of you and to so many others. F*ck lung cancer that just took my sister-in-law, who never even smoked! Just f*ck ALL cancers
Just make them all go away Please. :0 -
tessu
I had a cry day yesterday as well. I went to the follow up with my plastic surgeon and I just felt that things didn't go as well as I had hoped. I find in reflection the entire Cancer treatment was inconvenient, disappointing, and exhausting. I tried to find bright spots where I could but truly it was a lot more draining than I could have ever imagined.
I feel for what you are going through. Not to minimize what your feeling because I know myself it is very real and very difficult. I think it might be part of the process and that it gets better. I just believe we have to keep going forward and try to find a few bright spots in each day. The last month has been brutal for me. I went to a clothes sale my friend was having and I was just so depressed because I could not stand the way I looked in any of the clothes. I am disappointed in my reconstruction, I am disappointed in my hair, I am impatient for the world to be right again. I am impatient to be on my bike and to be exercising with energy again.
BTW I think they minimize the effect of Herceptin on the body. I believe it is very inflammatory and responsible for a lot of the side effects I experienced. I am exactly 2 months post Herceptin and finally..... finally..... finally .....starting to have many of the side effects go away. My hair is growing and my energy is coming back. My mood is improving . OH and my hands both stopped going numb and I might not need hand surgery after all. It just happened 4 days ago out of the blue. Now I believe it was inflammation from all the treatments or an effect from herceptin combined with Arimidex.
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update: Sorry for posting my meltdown yesterday. I finally did get a good night's sleep, and had a long text with a bc friend who's not on this site, and I feel a bit more stable today. One day at a time....
exerciseguru -- your comment about your energy level improving so much after stopping Herceptin gives me hope. Could Herceptin also be part of why I've been feeling so stressed and depressed? I hope your hands continue to improve so you don't need to go under the knife again
I am also on Arimidex and have blamed that for my current SEs but maybe --- hopefully --- Herceptin might be the culprit. My last dose will be early November, that's not so far away0 -
Hi ladies! Just popping in to say "hi" and that I'm thinking about all of you here and will be saying a special prayer for you all tonight, especially those facing biopsies, additional testing or any of the other garbage thrown our way in the year prior.
Things here are rolling along. I'm having minimal SEs from the Prolia, Arimidex, and Afinitor BUT the fatigue is just relentless. A high dose of adderall plus copious amounts of caffeine barely get me going. They do, however, give me that racing heart sensation that I can't stand. I finally went off my Xanax and had a panic attack out of the blue driving to court yesterday. Fortunately, I was able to breathe through it, but it was quite unpleasant.
I'm still running! I did 15 miles last weekend, but the heat is getting to me and I'm not sure I'll be able to run the whole marathon. My body seems to be starting to reject the mileage and I just can't train like I should with 3 little ones and a full time job with no paid time off until January. But my original goal was to run a half marathon and I've already beat it, so I'll take what I can get.
In other news, I went out of town to a work conference a couple of weeks ago which was the first traveling I had done since starting treatment. It's funny how life goes on the same way, yet doesn't at all. I don't want to be the person I was before cancer, but like many of you, I struggle to accept the "new normal" physically, as I wonder more and more if I really won't return to my prior shape. The brain fog is real, the fatigue never ends, I have a constant pulling, tugging, and some pain where the tissue shrank after radiation. No sex drive and the pain is almost unbearable. Although I'm waiting a while for final reconstruction, the implant I have is not good at all. I'm not sure where to go from here. Part of me wants to try for something I like and the other part is just SO DONE with being butchered.
Wishing you all the peace of Christ today, tomorrow, and always.
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cajunqueen I am in awe of you that you RUN!!! I have been so far unsuccessful in my attempts to get back to the regular exercise I so loved before bc; can't seem to stick with it more than a couple days at a time
Go cajun!!0 -
Had my six month mammogram and ultrasound and came back clear. I dont have to see any cancer doctors for 12 months. It feels wierd.
Radiologist recommended seeing a physio about my poor boobie not draining fluid. It ends up being very swollen and heavy....she said Id be amazed how much correct massage technique would help.
I have got some sort of routine back. Ailments I have I work around ad best I can....they are the new me I just have to go with it.
Cajun you are amazing I love reading about your running☺
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THANK YOU ALL FOR PRAYERS. THE BIOPSY CAME BACK NORMAL THANK GOD!!!
BUT THE RADIOLOGIST WHO DID THE 3D MAMMO AND BIOPSY SCHEDULED AN MRI, HE SAID TO GET CLEARER PICTURES OF THE LUMPECTOMY SITE AND I HAVE DENSE BREAST TISSUE. HE ALSO SAID HE RECOMMENDS EVERYONE WHO HAS HAD BREAST CANCER TO BE SCREENED YEARLY WITH MRI. MY BS, ONCOLOGIST AND RADIOLOGIST ALL SAID IT IS NOT NECESSARY????????
WELL I HAD IT DONE FRIDAY AND THEY CALLED ME YESTERDAY AND SAID THEY COULD NOT READ IT!!! THEY THINK IT IS BLURRY BC OF MOVEMENT????? I DON'T THINK I MOVED....ANYWAY THEY WANT ME TO REDO IT THIS FRIDAY......
I AM CONFUSED, ANXIOUS AND JUST WANT TO GET ALL THESE TESTS DONE AND HAVE GOOD RESULTS, I AM SO THANKFUL THE BIOPSY CAME BACK OK AND THANKING GOD CONSTANTLY THAT I AM STILL HERE WITH MY FAMILY AND FRIENDS.
JUST WONDERING HOW MANY HAVE HAD MAMMO'S, BIOPSIES, AND MRI SINCE FINISHING TREATMENT? EXPERIENCES? WHAT DO YOUR DOCTORS SAY ABOUT MRI'S AFTER BREAST CANCER? AM I DOING THE RIGHT THING? REDO MRI? DON'T REDO MRI?
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Good news my 1 year and 2 month mammo came back clear. My sonogram just showed the space where I had the lumpectomy as a fluid filled lump really hard and somewhat tender but they do not want to drain it because of risk of infection after all the radiation I had to the right breast. All in all good news but my breast surgeon wants me to see another neurological oncologist for my brain meningioma two MRI show it staying the same. My headaches started after my 36 radiation treatments so they ordered a head MRI.
Any body else have any meningiomas?
Odd my headaches are much better on the xeloda. It seems to have taken away a lotof my aches and pains.
Anybody else triple negative on xeloda?
On an upbeat note in the middle of all this BC stuff I just had a Botox treatment and line fillers for my face. Easy and wonderful result unbelievable pick me up.
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tkemp, I have no boobs but I have heard that about an MRI. I'm pretty sure they recommend one for anyone with dense breasts. My one and only mammo failed to catch my tumor at all.
No Xeloda but I'm curious about it...it has similar side effects to Afinitor. I wonder how they differ.
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tkemp, I have heard that an MRI is safer than a mammo and shows more. I had a BMX like others so I get to skip past that. That's awesome your biopsy came back normal! I'm sorry that you have to go back in for another MRI, they sound like a rock concert!
Tessu, That's great you switched to a senior ONC that doesn't talk down to you, that irks me so bad. I hear you on the emotionally draining part, there are days I called in sick because I just couldn't deal. My mental days really helped to get out my emotions and be able to move on to another day. It'll get better, more time passes it'll get better.... it better lol
Cinque, Yes no sexual drive. I look okay but I don't feel okay or sexy at all. I'm trying to see myself as I did before, more of a sexy woman. I switched in my lazy sleep wear for sexy pjs or things that show off my "assets". LOL It helps a little. I guess it'll be a work in progress.
Cajun - DUUDDEE you run far! Keep it up!
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I am really over the fatigue. I came home at lunch to relieve stress by doing an hour of yard work and fell asleep after eating. I just want to get through a day without needing a nap, which I never get. Is anyone else still having this? I can't tell if it is the wild card Afinitor or residual crap from treatment. Is it forever?
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I am a few months ahead of you gals. My fatique is passing; but still any evening event dinner or meeting is a problem, I think I can do something after work and then I get too tired and cancel. I really still just want to go home and to sleep.
Xeloda is an old drug with a new indication for triple negatives based on a study out of Japan
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country I 100% agree. I have no interest in date night or a girls night out. By 8 p.m., I am done.
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