Starting Chemo September 2015; join us!
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Fidget, that is wonderful news!
Sometimes "probably benign" is the best we get. It's so difficult to believe and keep going when they don't provide a good alternative explanation. But that's what I'm going to be doing for a little while - hoping the two bad signs are just quirks without a good explanation. Enigmas, as you say.
Cajun, I will be thinking about you on marathon day - it's so wonderful to have you running for the rest of us! I've never been able to run, for medical reasons, but prior to my disability affecting my lower limbs, I actually walked a marathon. It was one of the best things I've ever done.
Wishing everyone a healthy and happy weekend.
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Fidget- I lurk around in the background but I am praying for you. I just got "de-ported" this week. And have completed 3 Hypofractionated radiation treatments. But I still can't bring myself to getting my Pet Scan. I can only hope that what they saw in the first PetScan is stable, gone from site, or still explainable. The Femara makes it hard to walk, stand up straight without a lot of stretching, or get up from that uncomfortable radiation table without help. I feel like a turtle on its back.
Tessu - I have come to the feeling that people who want to tell us that it will be "when" a recurrence are trying to be clinical- but no one knows who or why people have recurrences. So all I can do is try to focus on moving forward. And I'd like to "hold" your hand as we move forward in our cancer journeys. Not too tight because I know you have lymphadema, with my past in ancillary cording we are a good pair.
Cajun- I am just jealous! But very proud of you as I hobble around with neuropathy. It is painful just to walk the dog and scary going down stairs. But "Good Going!" to you!
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We ARE warriors, and we've got each other's backs! So grateful to be part of this wonderful group
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Thanks Tessu! What I am understanding these days is that we all have days where we just have to sit back, lick our wounds and rest up for the next fight. I got your back, babe!
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Cinque-Thank you for telling me about your mom. I want to be where she is. This gives me hope.
inSF-you are right. I guess we have to pass each hurdle as they come and live our lives. I have to stop thinking that I'm sitting on a time bomb waiting to go off any minute. I want my life back.
Grey-Thank you for reminding me that it's okay to have my bad days. You ladies give me strength in numbers that I can't get anywhere else. I hope all your scans come back stable and I know what you mean about the turtle thing. I've had 4 different scans in three weeks. Each time my back hurt worse. I didn't think I was going to be able to get up, and when I did, it was slow going for a bit.
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I have so much love for you all and so much i want to write! The fact that my twins have stopped napping at 3.5 is making me lose my mind. Mommy needs quiet time too!
Happy happy happy day for it probably not being mets!
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fidget ❤️ That's the best news!
Cajun you run gal
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That's great Fidget!
Cajun, You go girl! Keep running!
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Hey ladies just checking in I so appreciate finding out how you guys are adjusting to life and the ups and downs post treatment.
HHurray I had. my last Herceptin it kicked my but and made me super sick but I am glad that's done.
I had some cotrisone shots and my left hand is in a brace cast for 6 weeks. Hopefully I can avoid surgery. My right hand will probably need it. I don't think the implants are helping matters. They weigh quite a bit. I can't build back up my core because my hands are so bad and I think that is putting additional strain on my wrists. I am still doing stretching but my wrists can't take any weight at all.
I have my survivorship appointment on Thursday. Still haven't decided what to do about the port/scar reconstruction follow up. I am going to ask my PS about that and fat grafting in two weeks. If I do fat grafting he might be able to remove the port and try to repair the giant wound scar from when I had the port infect. Its sucks big time because it is right in my neckline. It shows with every shirt I wear.
Also the mountain is on fire here so I am coughing a lot and ofcourse that freaks me out because my last appt my doctor always ask me about Coughs.
Cajun super cool that you are getting back into running. I had a run coach who told us "don't try to get your life back in the first 5 weeks" If the smoke from the fires clears in the next few weeks I am going to start walking/running. I need to get the kids back in school and things a bit more settled. It feels like I have been in a foreign country for a year. Life changed so much during my treatment. My daughter became a preteen and I am getting to know her all over again. Both kids are starting new schools. A lot of changes and I am still trying to get my bearings.
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Hey everyone. Finally saw my MO today. He handed me the PET report where he had highlighted "No evidence of tumor or metastatic disease". So I asked him what in the world was on the MRI. He really feels like the spots were just weird blood vessels. He said they are too small to biopsy which is the only way to be 100% sure of anything, but his gut says no cancer. He said it would be too strange for the chemo to be killing my large breast tumor while it was also forming on my spine at the same time. Could it happen? Yep, but not very likely. So we will repeat MRI in 3 months to see if there is any change. So I'm trying to take this as great news, but I guess I'll feel better in 3 months time. In the mean time, I'm glad to know I have you brave ladies to step in and help me keep my sanity when I start feeling the anxiety creeping in. I do have my mammogram this month, but MO said anything there would have shown on the PET as well. <<hugs>>
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i HAVE NOT WROTE IN A WHILE BUT I HAVE BEEN READING ALL OF YOU GUYS UPDATES.
MONDAY WAS A YEAR SINCE MY MAMMOGRAM AND FRIDAY (TOMORROW) WILL BE A YEAR TO THE DAY THAT I WAS TOLD I HAD BREAST CANCER. THERE ARE SO MANY EMOTIONS GOING THROUGH MY HEAD!!! ITS A LOT TO HANDLE AS YOU GUYS ALL KNOW...I HAVE SO MUCH TO BE THANKFUL FOR AND I AM.
I AM TRULY THANKFUL FOR EACH OF YOU, EVEN THOUGH, I HAVE NOT PERSONALLY MEET ANY OF YOU, I FEEL LIKE I KNOW YOU AND YOU ALL HAVE HELP ME SO MUCH THIS YEAR..THANK YOU ALL!!
EL TIGRE- HOPE YOU ARE DOING WELL. I AM IN SAME SITUATION - MY ONCOLOGIST DOES NOT BELIEVE IN DOING ANY SCANS OR TUMOR MARKERS UNLESS I AM SYMPTOMATIC. NOT EVEN SURE WHAT THAT MEANS BC I DID'NT HAVE SYMPTOMS LAST YEAR NEVER COULD FEEL THE TUMOR. HOW'S YOUR BLOOD DOING? MY WHITE BLOOD HAS FINALLY MADE IT TO A 4.... HAS YOUR DOCTOR DONE TUMOR MARKERS?? I AM WONDERING IF ITS NORMAL NOT TO DO ANYTHING?
I SCHEDULED MY MAMMOGRAM (SEPT 14TH) I AM HAVING ANXIETY ABOUT THAT?
HAVE MOST OF YOU GUYS HAD YOUR MAMMOGRAM YET? HOW DID THAT GO?
I ALSO HAVE CROHNS (23 YEARS) I COULD NOT HAVE MY 3 YEAR COLONOSCOPY WHILE I WAS TAKING CHEMO, THEY TOLD ME I HAD TO WAIT 4 TO 6 MONTHS AFTER I WAS FINISHED SO I HAD THAT DONE 2 WEEKS AGO, DOCTOR SAID EVERYTHING LOOKED GOOD AND GOT RESULTS OF BIOPSY WHICH THANK GOD CAME BACK GOOD. (NORMAL)
NOW I NEED TO GET MY THYROID CHECKED (HAVE A NODULE, BEEN THERE FOR ABOUT 10 YEARS) THEY DO SONOGRAMS EVERY 2 YEARS, BUT OF COURSE THEY DID'NT WANT THAT DONE WHILE I WAS DOING CHEMO EITHER.
HOW DO YOU LADIES FEEL ABOUT SCANS, TUMOR MARKERS AND TESTS ASSOCIATED WITH POSSIBILITY OF RECURRENCE AND OR METS?
I CAN NOT BELIEVE ITS BEEN A YEAR!
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Hello to all my October 2015 Chemo Ladies!
I started chemo in October, ended in April, had radiation from May-June, and am now taking Tamoxifen.
I have been feeling great, and have planned many fun things for this fall, because I missed so much last year. I'm sure you all know how that feels to miss so much. Now I feel like I am making up for lost time!
Next Friday, August 19th, is the anniversary of my diagnosis. What a year it was. I will go for my first mammogram on August 23rd. Did you guys have your first mammo yet? How did it go? I'm nervous because of two things: one, that they find cancer again, and two that someone will be touching my breasts after lumpectomy and reduction surgery and I don't think it a mammo will be as easy as it used to be when I was larger.
If I am clear with the mammo, I won't see my oncologist until October. I don't have any other tests planned. Should I be asking for something? I see people get PET scans and wonder if I should be getting one too.
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AUTUMN121 MY DOCTORS SAID I HAD TO WAIT 6 MONTHS AFTER RADIATION FOR MAMMOGRAM WHICH WOULD BE OCT 8TH, BUT IT HAS BEEN SCHEDULED FOR SEPT. 14TH. THEY SAID RADIATION DOES SOMETHING TO BREAST TISSUE AND IT NEEDED TO REST FOR 6 MONTHS....WAS ANYONE ELSE TOLD THIS?
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Tkemp - Hi, I'm struggling mentally a little. I think it's the annoyance of the aches and pains we deal with. I feel worn down by it. Other than that I'm peachy
. My WBC was about 3.56 and I did a 5 day fast (naturopath recommended it to rebuild my immune system) but... my numbers came back WBC 3.26, so we're not doing that fast again for awhile LOL. I have read it takes awhile for the numbers to bounce back. i hope our numbers bounce back, it would be a comforting sign.My MO was very receptive to have a follow up scan but I decided not to expose my body to more radiation. I don't understand the reason they sit and wait for something else to pop up either but at the same time I hate scans and tests and the awful waiting. My MO pays attention to the liver enzymes from my blood tests (since i had spots on my liver and one biopsied=not cancer) and any aches and pains that have persisted but really other than that it's push forward. i know I've asked her about tumor markers but she seemed like she didn't hold them in high regard.
I start Zometa at my next trial of herceptin on the 19th, don't worry I didn't google the side effects of Zometa, yet. My bone density came back as mild osteopena, so that's awesome.
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EL TIGRE- ZOMETA- IS THAT A TRIAL? I AM TIRED MOST OF THE TIME BUT I PUSH MYSELF TO DO STUFF EVEN WHEN I DON'T FEEL LIKE IT. EVERY ACHE AND PAIN I WORRY AND PRAY....I WAS SO HAPPY TO SEE MY WBC UP TO 4 WHICH THEY CONSIDER NORMAL. (I WOULD LIKE TO SEE IT AT A 5) I HAD A 9 MM SPOT ON MY LIVER WHICH I DID'NT KNOW ABOUT UNTIL I WENT BACK AND READ ALL THE "MY CHART" TEST RESULTS. THE DOCTORS TOLD ME ALL MY CT SCANS WERE NORMAL. (OF COURSE WHEN I READ THAT, I FREAKED OUT AND WHEN I CONFRONTED THE DOCTOR HE SAID "THE TESTS WERE NORMAL" IF THERE WAS ANY QUESTION ABOUT THE SPOT WE WOULD HAVE DONE MORE TESTING. SO WHAT DO YOU DO? PRAY PRAY AND PRAY SOME MORE. HAVE YOU HAD YOUR MAMMOGRAM ??
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oh fidget that's good news. I was praying for you. Please keep us updated.
Tkemp yes my bs wanted me to wait 6 mo after finishing rads to have my mamo but my mo and ro said to do it in July. So I did and had fibro edemas show which they said happen after rads & chemo. They have me on a 6 month repeat for my mamo. I am not happy waiting but my bs said there would be nothing to biopsy as the appear as likely fat necrosis in the empty cavity from my lumpectomy. My boob def feels heavier and tougher since rads. And it sometimes swells in my bra. It has shrunk a bit and my boob is a size different from the other. Ro said I could do reduction/lift but to wait a year or 2 for tissue to settle in.
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Tkemp -Nice work!! up to a 4! Ahh I'd like to be at a 7, the count we were at before surgery!
the trial is the infamous neuvax vaccine (1 of the trial of this vaccine was shut down) Mine is a double blind 50/50 shot for the vaccine. A major part of it is herceptin. I know i get that, I'm a HER "+1" considered neutral HER2 so it'll help combat that aspect of the cancer.
Zometa is a shot i'll get 2's a year to preserve my bone density. The theory is to help the bone density and to prevent "homes' for cancer to hide or metastasize in the bones.
Happy that your scan was normal, a little surprised they didn't say anything about your spot. 20% of people have spots on the liver due to damage or random hematomas (spelling sucks) but with us they have to take a closer look
. No mammos for me unless they want to check out my remaining nipple! Then I'd rather have the plastic surgeon remove it
i might anyway since I want to do the nipple tattooing. 0 -
SHOPGAL2- MO SAID 6 MONTHS WHICH WOULD PUT ME 2 MONTHS PAST MY AUGUST 8TH 2015 DATE. SO I WAS CONCERN ABOUT GOING PAST THE YEAR ON THE OTHER SIDE. SO THE RAD DOCTOR SAID SPLIT THE DIFFERENCE AND MAKE APPT IN SEPT......I AM NERVOUS AND PROB ALWAYS BE.
MY BOOB IS SMALLER AND PERKIER THAN THE OTHER ONE.
BUT I'VE NOTICE ON THE INSIDE, LOWER AREA THE SKIN FEELS THICKER OR I DUNNO DIFFERENT. I TOLD THE SURGENT ABOUT IT AND SHE SAID SIDE EFFECT OF RADIATION. ANYONE ELSE HAVE THIS?
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yes it feels different, like no pores or tightened skin different. the elasticity has gone away on the radiated side
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yup me too.
Anyone still having chemo brain moments? Today on my way to work I passed a sign for car inspections and realized that I forgot to get mine done in June. I was so upset with myself for forgetting.
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Chemo brain, yes. I still stutter in court. I locked myself out of my house. I forget basic words. My brain has a definitely taken a hit.
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Hi everyone!
So nice that many of you are still here. Cajun, running! I'm so impressed by that. Fidget, so glad things are OK or at least as OK as they can be.
I had my mammogram on June 15, exactly one year after my diagnosis. They only did the left breast and there were 2 tiny spots, which were calcifications, and I had to undergo a brutal biopsy process the following week which involved lying on my stomach with my boob hanging through a hole in the table while the surgeon got underneath with a needle, carefully aiming at those 2 spots. I couldn't move AT ALL for more than 30 minutes. My breast was really sore for several days and had an ugly purple bruise for more than a month. Thankfully, everything worked out OK and it was nothing serious. I found myself doubting that I could go through all this crap again, especially so soon. I have to get another mammogram again in December.
I'm managing to keep the lymphedema under control, which is good because it's too damn hot to wear the sleeves all day. I try to make myself wear it when I'm inside with AC. Still have a touch of neuropathy on the soles of my feet, which is most noticeable when I take a shower. Not sure why that would be, but whatever.
Still get tired easily and have lots of aches and pains, which may be from the Femara or simply old age. I don't know, but sure don't like it! The Femara is the only treatment I'm getting right now.
Sure do hope ya'll stay healthy, especially you young ones!
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Hi ladies. I haven't posted lately but I've been reading. I had mammoth yesterday which was three months post rads. Surgeon called it a baseline. I don't know when the next one will be.
Chemo brain is a problem for me also. I have trouble concentrating and working thru more complex issues. I also feel fuzzy brained like I'm on the edge of a day dream most of the time. I was blaming tamoxifen for the fuzziness. My mo said probably not and they don't know what causes these problems. She mentioned ptsd, menopause changes, and normal aging. It seems to me like they don't want to acknowledge all of the effects of treatment.
Herceptin 17 of 18 today. Almost there.....
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I def notice that i am slower and more forgetful. I find when i have to do difficult balancing with numbers I get confused and have to start fresh.
I have read that a very high % of women have PTSD from this.
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I'm taking a Rx for Alzheimer's/dementia patients! Sheesh. But I feel good! The edge of the daydream part 100% nailed it. That's exactly what it's like. I want to take a hard pass on the stuttering. No bueno! I locked myself out of my house this week and walked to the wrong car in the parking lot. That's the new normal.
Thanks for checking in, ladies. It is so nice to hear from you all, the ups, downs, and everything in between.
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Wow the number of times I have pulled my car over because I forgot where I was going.. Its getting better now because after a few seconds I start to remember but there for awhile I couldn't remember anything. My smart phone has all kinds of lists recording options, and note programs and I use them all judiciously. There was one time I was on my way to a track team. I sent the coolers ahead and just needed to stop and get drink cups. I pulled into the parking lot of the store and sat there for 5 minutes trying to remember why I wasn't at the store. Finally I realized I was supposed to be at a track meet so I just drove off and went there. When I saw the cooler I remembered why I had to go to the store.
I have also forgotten names of people I interact with and probably half of my advanced engineering degree. Sigh
The other aspect that gets me is I am just more anxious emotional depressed and short tempered. These emotions hit me at different times and I try hard not to take them out on those I love but Its discouraging at times.
I especially am tired of people asking what my plans are for work and life because I am the kind of person who always has a plan and right now everything in my life is day by day 2 steps forward 3 steps back. Also I am impatient for my hair to grow back in..... It finally looks less dorky. now my sides kind of have wings and I am torn whether to cut things into a short style or ride it out so I can tuck them and have a cute short bob.
What is everyone else doing for hair?
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I forget words and peoples names. As you all know its very frustrating and when you are having a good 'normal' day its a reminder that things have changed it makes me instantly angry.
My hair is getting better Ive got the wing thing going on too....I just use product to control as best I can. It came in super curly but the top seems to to be relaxing a bit. I has the back cut short and shaped a bit. I only the dryer and straightners occassionly, its like baby hair so I treat it kindly. I spray in a leave in moisturizer and have a colour put in every four weeks. I have to say I had lovely hair and it feels like forever since Ive liked my reflection but it is slowly...very slowly getting better. Again I avoid mirrors because it makes me sad/angry.
Exercise maybe hang in there with the wings and get the hairstyle you want xxx
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Cinque thank you for just admitting things make you angry. I know I should be grateful. I know I shouldn't be so dang impatient. I know I should just drink in every day and relish all that I have but I do find myself having the emotions that you describe. I get angry more often lately than ever before. I get discouraged to. I just feel like this treatment shoved me in a big hole and I am trying to dig myself out.
I am really surprised more women are not more open and candid about this whole TE reconstruction deal too. My replaced implants are like bricks in my chest. Atleast a few times a day I have a shooting pain in my right breast and it is tight all the time.
My survivorship appointment was basically this PA going through a 20 page disclosure of all the SE and symptoms I will or could have and that there are no guarantees that they caught the cancer or that it wouldn't come back. I felt like the hospital was making sure that they gave me fair warning so they could not get sued. It was super stupid and a major waste of my time.
I am sorry I am really stuck in whining mode.
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We have every right to be angry we are young women having to deal eith this crap. I like most on this forum am trying my best to push through and am confident that as time passes we will feel better.
Had my first manicure yesterday first day in a year my hands look nice....see bit by bit better.
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