2012 sisters
Comments
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JP: prayers, eyes, fingers and legs crossed for clear margins. Hope you're sleeping peacefully right now. 😌
Tpoly...thanks for blazing the trail. I am trying not to worry, but trying to remember when to take everything scares me in and of itself! I was told to take the sideman BEFORE I even go.
Ramols: yay on the negative BRACA results.
Soya... You go girl!
I had a HORRIBLE evening last night. Around 8:00 I started getting shooting pains all around my TE. P/T today said its most likely nerve endings waking up and looking for a partner end. Today I feel like a horse kicked me. I also feel like my TE shifted. Is that even possible!? The nurse practitioner at the BS office where I stopped on my way out of hospital following PT this morning said she was pretty sure everything is too tight for shifting. It's my muscle pulling. It isn't the skin I'm feeling now like early in expansion. It's the rib cage and muscle. Like I have an underwire bra that can't be untucked.
My husband is out with friends and stating out later then expected. I'm upset. We were supposed to be in the Outter Banks on vacation this week so he's off from work playing golf every day and relaxing. I'm TRYING so hard not to hate him for being able to go out and forget for a little while. Although I say I try to and do sometimes, the physical discomfort/pain never totally goes away right now AND IM SO FUCKING JEALOUS!!!!!
Ok. I feel a little better. Thanks for listening ladies. Hopefully I'll make it through NYC tomorrow. -
Juneaubugg, I felt like I had a broken rib after my bmx, but only on on one side. It lasted about a week. If you have any pain pills take one. Somtimes you just gotta. Much love
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Hello ladies!!! Thank you all for your words of wisdom and compassion, I was in a pretty dark place last night ( post was whinny) I saw my doc today and the lump has shrunk from what they say is a palpable 4cm to a 2cm, Ive only had 2 rounds of chemo so this is encouraging, I'm having number 3 tomorrow . I also found out that it is a grade 2 which i hope makes a difference. I'm now looking forward to finishing chemo and getting on with surgery and radiation. I'm tired of dwelling on my "old life", its time to look to the future. I have a wonderful husband an two beautiful boys who need me! I'm not going anywhere!!!!! GGGGGGGGRRRRRRRR I'm soooooooo mad at cancer!!!!!!
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juneaubugg-Sorry about your night, the pain is most likely nerve endings but I cannot speak on TEs cause I didn't have them. And really sucks about not being able to go on vacation with your husband. I hate this fucking cancer too!
mimi1973-So good to hear that your chemo is working! So all this will be all behind us!
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mimi- exciting news that your tumor has shrunk. For me that made the hell of chemo worthwhile.
tpoly-So glad you finished your first chemo. Somehow getting the first one over helped ease a lot of my anxiety. I got sick within 5 hours of my AC each time, weather I took my meds or not. I hated the meds more than I hated the nausea so I put up with it. Usually by the time I went to bed I was feeling OK. My stomach still bothered me for a few days but without the nausea. I hope you do OK with it. It really sucks but keep reminding yourself of what its doing to make you better. When is treatment #2?
jp-Good luck tomorrow. I will be thinking of you. I got clear margins with my second surgery!!! You will get a good path report this time!
juneau- I hope you have a better day tomorrow. Thinking of you.
As for me, my wound vac arrives tomorrow. Believe it or not, the UPS man is bringing it. My DS was confused when I told him that and asked me who was going to teach me how to use it. Without missing a beat I told him the UPS man was and that he was highly qualified to set me up and do my dressings!!! I love it when my kids and I can joke around about this horrible disease. Actually I am going to my BS and he and his nurses are going to set me up, do my first dressing and show me how to use it. After that a nurse will come to my house when my dressings need changed. It should be a very interesting day tomorrow!
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Tinajason...night number after chemo somewhat done. Nurse told me I wouldnt sleep. Laid down at 10 abd woke up at 4. Not bad for not suppose to have any sleep. (we also had an earthquake otherwise I might still be asleep!) treatment #2 comes in two weeks. (my cycle is every other week) thank you for the support and good luck learning the dressing.
Claritin users....I'm a little confused. Take Claritin every night while on chemo or just a few days before/after nuelasta. I took one last night and get my shot today and wasn't sure how long to stay in the Claritin regiment. Your advice is greatly appreciated.
Have a good day everyone!!!!! -
Ok ladies has anyone heard of a Ki67 marker??? On the pathology from the biopsy report????? Help me out here
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Dakota - Yes, it's on my biopsy report. I think it is a marker for proliferation/activity. Not sure and quick posting only. Lower the better. Seeing your diagnosis line if you can find it on your report would bet it's pretty low. I think, 'course I'm certainly no expert, it's tied loosely to grade. Someone on here will be better than I am. Do know for sure lower is better. I don't think it's on my final path report but could be wrong.
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Thanks the bs eluded to the fact that mine was high but said it wasn't her area. Thanks
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My kI67 was 25%???
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Soya... I can only imagine how good it must've felt to do some real exercising.
Jpmom - thinking of you today - check in when you feel up to it.
Ramols... great advice on resting up - that's what I did yesterday - I felt so tired and weary. My DH keeps reminding me that I have just had major surgery and its ok to rest and heal. I am very very impatient by nature so its hard for me. Great news on the negative BRCA result.|
Moonflwr - I am with you on the exhaustion - lets nap together.
Juneau... I am with you on how jealous we feel when DH still can have a life. Mine went over to our neighbours and had a beer - yes just one - with the husband... and boy was I in a pissy mood when he got back... had a total melt down. Poor guy, one beer and he's my rock and I love him so much and I couldn't have done this without him, but last night I thought he was the biggest jerk for doing that.
Mimi... join in the pity party - its OK. Great news on chemo shrinking that bitch tumour. Chemo shrank mine too.
Tina_jason - good luck with the wound vac. Great you can laugh and joke with your kids about this stuff.
Tpoly... one tx down... it will soon be in your rear view mirror.
Dakota... sorry cant help - seems Canada and States use different ‘things' to describe our cancers.
Sorry if I missed anyone - am thinking of you all though and sending you wonderful, happy positive vibes.
Love ya all xxx -
Hi guys I am back from my redo lumpectomy already. So far so good. much less sore this time since they didn't do any more lymph nodes.
My husband is a pathologist. Luvmygoats, you are correct it is a marker of what percentage of cells are dividing at any one time. The higher the number the more cells are dividing. Normally there should hardly be any cells dividing. my husband says around 20 is high. The higher the number the more aggressive, higher grade the cancer is.
Gnna go relax now. I made the mistake of trying to eat peanut better on my bagel. I just found that I have no saliva and that didn't go well. Drinking some wonderful tea now. -
JPmom. That was fast! What time did that start? Excellent! Do rest, you still had surgery and need to rest but glad that was 123 with set up and done! Now for good path next!
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Rest up jpmom... happy to hear you do not have so much discomfort. Take care.
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Jpmom,
Glad it went well!!! -
Calling all ladies, calling all ladies. Would like to share a story with you and just wonder if there is anyone out there who knows the best people to contact regarding this issue: Didn't know what other forum to post this on so chose this one (plus one other I post on).
cutting a long story short:
My parents (both 78 years young) live in the UK. They contacted a company on the internet called Just Flowers to have a 'surprise' bouquet of flowers to be delivered to my home on Saturday August 4 when I returned from hospital after my mx. On the Monday my Mum had to ask me if they had been delivered as I hadn't mentioned them. No delivery here I said. she called and they said that they would attempt to deliver on Tuesday as the original florist didn't have the correct product she had ordered. Tuesday arrived, still no flowers, but an email to my Mum asking for a further $20 - on top of the $80 they had taken from her account - so that they could go to ANOTHER florist to arrange delivery. she has asked them to cancel the order - still no refund of her money yet.
So ladies in the LA/California region... who would be the best people to contact to let them know of this disgraceful so called service. I have emailed the LA chamber of commerce, but wondering who else I can contact to put the word out.Thanks for any advice.
One good to focus my pissy mood
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You could try the Better Business Bureau. They should be able to direct you to other venues you could contact as well. Sense it involves banking, I'd also report it to her own local area law enforcement agency.
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Thanks Mini... I will look into the BBB. I'm so mad that they can scam people this way... I felt so bad for my parents.
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My mom used to get bills for magazines she never ordered and then would want to pay them becuase they would threaten her with the credit bureau. I don't know how these people sleep at night.
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Mini... I agree, how do they look themselves in the mirror each morning and go to that place of work. I just couldn't do it.
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Home from overnight stay in hospital from exchange surgery. Going well, no pain pills since 2:30 am. My PS used the same incision as the BMX and extended an inco or so on both sides where skin was a bit loose. Came out of anesthesia fine.
I was so anxious and gloomy going into this surgery, and only now s it dawning on me- hey! This could be the end of formal treatments for this BC and BRCA stuff!! I have nothing looming ahead except 3 month checkups with MO and BC. Arimedex doesn't seem to be bothering me (almost 3 weeks now.) cassuming this heals up ok, I may get to stop dealing with it constantly! Kind of amazing, after 6 mos for a tumor no one could feel..
My K167 was 43- and yes my MO says they like scores about 10. I also had grade 3 and oncotype of 38. My tiny 8mm tumor seems to have been a bad player, huh? Glad it is cut off, gone, systemically blasted with tc4 and any runaways are getting starved by Armedex .
(why the heck did they it grade 1? Judy because of no nodes.)
Tired but relieved. Hugs to all of you- you understand ...we care for each other about this hard struggle we go through. -
Tazzy thats a bummer! There are alot of people complaining on http://www.ripoffreport.com/Search/justflowers.aspx Definitely report it to BBB like Mini1 said. I wonder if they could dispute the charge thru their bank since they didn't get the product. I did that and they credited the money back. Worth a try.
Jpmom glad you're feeling ok. Prayers they got good clean margins.
Juneau hope youre feeling better. It's hard but we need to give our DH's a pass on a few things; this is a whole new thing for them too. They may love us to death but probably need a break from the cancer talk every now and then. Unfortunately we can't take that same break. But remember you can knock him over with your new weapons if it will make you feel better! Act like you're going to give him a big hug but hit him with the coconuts- you probably won't feel it but he will! You start in the BGC this Friday? I'll be thinking about you. Hope it goes ok.
I'll tell you Monday, I was totally stressed out just because I had to go see my MO. It was just a routine visit but I had a blood draw a couple weeks ago and I was so concerned he was going to tell me something I didn't want to hear.. Thank God he said your blood work is great. I'm sure he was trying to assess my mood, etc but ask me what would I say is most changed in my life since my diagnosis and surgery. LOL I don't know what he expected me to say but he looked quite surprised when I said "That's easy, most definitely my chest! It's really different than the one I had back then." He asked me how I hoped my life would be different in the next 3 months and I told him I definitely hope to have traded in these hard twin peaks for some squishees. I don't know if I passed or failed his "assessment" but I am definitely feeling better now that I got that off my chest. lol
Hoping everyone is feeling ok and not having any pain or se's.
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jpmomof3-Glad you're home, get some rest now!
lisa2012-Glad you're well from your surgery as well!
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Tpolychron- By all means, you go out and have the hoorah with your family. The night before my chemo, my son and I went shopping and out for dinner. It was a blast and made the next day seem a little less ominous. (I did tell my DH that we were running away because I didn't want to go.)
In my mind I can still taste the yummy food I had that night and I'm REALLY looking forward to tasting food again. My taste buds were destroyed by chemo and nothing has any flavor now. I eat only because I am hungry, I get no pleasure from it, which isn't such a bad thing as I haven't been eating any sweets since this started. I'm actually looking forward to getting on the scale next week as I KNOW I've dropped some pounds since the last infusion. (My pants fit nicer!)
Good to see you back and posting Tazzy. Will you have rads after you are healed? I guess that's my next step in this adventure.
Having a rough emotional week.. maybe because of the chemo? When I went to my BS for the first time she said that my cancer can be "cured". My MO said the same thing, but because of my age (45) and grade 2 tumor, they both recommended chemo as adjuvant therapy. Lately I've been overcome with this terror that the cancer is just lurking in my body somewhere so it can recur somewhere else. DH doesn't understand my fear. MO says with chemo/rads/tamoxifen, I will cut the chance of recurrence to 5%, why am I so terrified? -
PAEaglesfan - my husband lost his taste after chemo too. What taste he did have for awhile was off, and he said things he could tase tasted metallic. Especially coffee for some reason. But he did get his sense of taste back. It came back slowly, but it came back.
Also, you're probably terrified for the same reason lots of are. We have cancer. I am struggling with that fear too. And I have issues that will prevent me from taking the adjuvant tretment, so I'm going through this with just surgery, radiation and natural alternatives. Everyone says it will get easier with time. We've been through lot and have had our worlds seriously rocked. I try to remind myself that I don't sit around and think about how many people are killed in car crashes, or have heart attacks, etc. I've got to learn to do the same thing with this. It is what it is. It sucks, but that's my reality. Another poster said we have PSTD. I'm beginning to think she's right.
I hope you get your taste and your peace back soon.
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Lisa - happy you are home and recovering nicely.
2Fried - you do make me laugh. I am sure your doc speaks about your comments in the staff room.
PAEagles... yes 5 weeks of rads when I am healed from surgery. Taste buds do return eventually. You are terrified cos we are all terrified. We put on our brave faces but deep down we are scared. We would not be human if we weren't.
that is why this site is so great. No one else understands ANY emotion we go through - but here everyone does and its ok to share those emotions.
hugs to you all xxxx
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Hello, everyone! I am new to this site and just have soooo many questions. I'm afraid my onc is not as good as some of yours.
I was 48 when I found a huge lump on my breast. I thought it was an injury because I had been trying to load a tempremental hog. A biopsy on Dec. 6th, 2011 confirmed cancer. The only thing I knew until recently is that it was not a hormone-type tumor.
As the tumor was large (3.5 cm), I had to undergo 4 AC treatments - 1 per month to try to shrink the tumor. After the second treatment, I could no longer feel the tumor so kept joking that it was gone and I could be finished. When talking to my PCP about it, he looked at the cancer markers and said, "I don't normally perform this test, so don't react on what I am going to tell you, but it says 'normal' is between 0 and 39 - yours was at 11 last month". OK... why am I still getting chemo and not going in for lumpectomy?
I did well with the A/C - my body craved orange juice and I drank it by the gallon. Did not get much nausea at all. However, after third treatment, I did pass out on my front stairs. I fell hard enough to cause whatever had been pinching my sciatic nerve for 3-1/2 years to move. I was happy! I could walk. Doctor was not worried that I passed out.
After the 4th treatment, there was confusion. Onc said maybe I wouldn't need surgery because he could no longer feel lump, either. Then he panicked - I needed 6 treatments, not 4! Went to surgeon. She said there was "no way" I could get by without surgery. In April, I had a lumpectomy and a Sentinel Node removed. Surgeon was ecstatic. Lump was reduced to less than 1 cm and margins were clean. Sentinel node had two microscopic cells - "like having no cancer at all". She said I would need to see the onc again, but she thought he would only have me on pills for a while.
When I saw the onc, I was told I still had to undergo 4 months of chemo, then some radiation, then 52 weeks (1x weekly) of Herceptin IV. I freaked. Taxol has been absolutely miserable for me. Pain has been intolerable for 4 days each time. Just had my last one. Onc. said he wanted to start Herceptin in two weeks - wouldn't need radiation. But... he wanted me to see RO anyway. Just talked to him - he thinks I need 6-1/2 weeks, every day for five days each time!
I did seek a second opinion after the first Taxol go-round. Unfortunately, in my area, all of my docs know each other. However, it was the second opinion onc that told me my original tumor was BORDERLINE Her2! I am sooo confused. Does any of this sound "normal"?
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ohsoconfused - first of all welcome to a wonderful place. There is so much knowledge here and everyone is happy to share their experiences. Its great that the chemo worked and shrunk the tumour... my chemo tx did as well... but still I needed surgery and rads. Little concerned that your onc said was 'like having no cancer at all'... bit like being a little bit pregnant. Cancer is cancer is cancer - IMHO anyway. I was on taxotere - similar to taxol and some of the ladies on this site swear by taking Claritin for the bone pains...I am sure one of them will chime in and offer advice on this. By what you say you cannot get a 2nd opinion which is a shame.. is there another area to you could travel to - for peace of mind. If not, if it were me (and I can be a bolshie cow at times) I would speak to the one you trust most and say you would like them to all sit down and talk about your treatment as their differing of opinions is giving you more stress and that is one thing you dont need. Do you have a family doctor you can speak to you about this? I cannot help with the hormone therapy either I am afraid.
If any of the ladies on here has other advice they will soon be on to share.
Hang in there and please feel free to share your emotions with us all. No holds barred on here.
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Tazy, if your parents paid by credit card, call the credit company. They will get the money back. I am hoping thats how they paid!
Ossoconfused, I would be confused to. I don't know much, but her2 does trump things, and chemo and Herceptin is required. a lot depends on where the tumor was, if the margins are clear, if the pathology matches what they thought it would. There are others here who know a lot more, keep checking for replies. Much love. -
Hello ladies. HUGs to those who are recovering from surgery this week and HUGs to those who have started chemo this week.
I too have no appetite and have lost my taste buds. A friend who went through Chemo twice for Ovarian cancer told me that they will come back but it takes time. Her suggestion was to stay away from your favorite foods while we can't taste them right, or you will remember how bad they taste now. I can no longer stand the taste of coffee (was a 3 cup-a-day girl before) and lobster (my absolute favorite) so I will stay away from them until this awful taste in my mouth is totally gone!. I have also lost my taste for sweets, I will eat somethign sweet if we are out and someone brings me a cookie but I do not enjoy it. My favorite foods now are anything with vinegar on it. I will even add more vinegar to make it taste better. And tart drinks like cranberry juice and lemonade help me.
Had a bad time with chemo #5 last Friday. I don't think my nausea meds work on me any more, because I was seriously sick the next day and for the last three days, when it is usually two days before that kicks in! And when I am nauseous I can't even move, so I have spent three days on the couch! I feel like my summer is being taken away from me!!
Can I "like" the I HATE CANCER posts from earlier this week! I had to break my daughter's heart that she cannot redo her room right now with new bedding and painting and curtains because I do not have the extra money. I am on disability from work and that only pays part of my usual income. She was upset but she is 16 so I explained the money of it to her, and she understood. then she came downstairs with her babysitting money and wanted to give it to me to help! ARGH!!! then we both cried together for a while. I did find the money for her to get a new bedspread for now and promised that as soon as I am able we will get some paint and redo her room. I have been keeping so much of the ugliness of BC from my girls trying to protect them! I guess that backfired!
I live in New England and it has been so beautiful here and I haven't been able to enjoy it as much as I want to. My hubby is taking a vacation next week, so maybe we will get to go to the beach or something for a day or two. I could certainly use a change of scenery and spend some quality time with the girls before they go back to school!
I am nervous that my blood counts are gonig to be bad this week. Feeling anemic again, even waking up stairs is an effort. Will find out on Friday... fingers crossed... I don't want them to be down, but the transfusion did make me feel so much better last time. that is the drawback of gonig for chemo every week. This Friday will be #15 out of 18 and my body just doesn't seem to recover in 5 days any more. ALMOST DONE for now.
I cannot do this without all of you ladies. No one understands what this is like, even if they try to. I even had a therapist tell me she knows how it feels, but then admitted to me she has never been sick a day in her life! I won't be seeing her again! Even though I do not post often please know that I am following each of you and you are all in my prayers every day!
HUGS to all!!
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