Calling all TNs
Comments
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Hi All,
I'm about 20 hours out from my first AC treatment. So far so good. The first day after each Taxol infusion, I felt fine...so I'm not surprised I'm feeling basically okay today. Just tired. My blood pressure was really low after chemo yesterday 78/58. It was low this morning too 80/60, so I think that's why I feel tired. I felt that way immediately after the prechemo Emend IV. I suspect it's something about the Emend, but I'm really happy to be getting it to combate nausea. I'm drinking water and have had some salty foods to try to boost my BP.
I read how so many think Christmas will be great this year. I'm trying to figure out how to make it brighter. We don't have family close by so it will likely be my hubby and me. It will be my off week for AC, but I think I will have just lost what's left of my hair....I'm thinking I have about 14 days until it's gone. I like to watch Heidi with Shirley Temple on Christmas day. Other than that, I can't think of much. I guess I'll be on the phone wishing my family and a couple close friends Merry Christmas. I have some time to think about it.0 -
adagio,
Only had two A/C treatments since they are cumulative I had severe reaction after second treatment. Was admitted in hospital via emergency -critical care -isolation. Had to have whole blood transfusions. My body was shutting down as reaction to chemo. Had hard time finding meds I could tolerate. Had reactions to two of the three meds given. This was done through a medicine specialist because of my allergies. Worst days ever. Talked with surgeon as my MO then was an ass! Surgeon holds degree in MO too but only does surgery presently. He is fantastic & always there for me. I can text him anytime & in a short time I get a reply. Can't beat that. I have changed MO's & new one is also great. Watches me like a hawk. But back to surgeon. After review of my full records after hospital stay, he agreed with me that I was in more danger taking chemo. So now nothing. I wouldn't wish anyone my body. My allergies started from age 7. I had acute nephritis. Back then penicillin was the backbone of meds. I was allergic & spent 5 months in isolation at childrens hospital. Since then my allergy list has grown. Most of my doctors don't believe me until they run head long into them. That was the case of my old MO. Along with his attitude. I dropped him like a hot potatoe!! All my doctors currently in the loop believe!! I have been blessed in the past with good health & therefore not in need if meds. So this is a double bummer.
My surgeon said that I am unique. To which I replied "but not in a good way!" So that's my story. I wish I could have finished my chemo but not in my cards. So I take each day as a gift.
Thanks for asking & sorry to be so wordy!
Marsha0 -
Inspired hasn't logged on since the end of Oct. I went back to her last post and it didn't give any reason, but there were tension filled posts happening at that time regarding what some think is appropriate (or not) material to post. Maybe she is just taking a break amid that and Michelle's death. We tend to lose some ladies for a while after a sister passes as it is so difficult to deal with.
Inspired (Debra)- if you see this, please let us know you are okay.0 -
No words of wisdom to give. Just big huge honking hugs to each and every one of you.
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Mamogram last week was clean. Whoop Whoop. PT/CT Scan tomorrow, please pray that I get a good result. Please and Thank you.
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guy girl - congrats , that is very good news - hope next tests are ok. My oncologist doesn't do any tests for me, so I don't have that stress to deal with. In your pocket tomorrow!0 -
Great news Guy! Sending good thoughts that PT/CT are clean as well. Are these just check up scans?0 -
Tomorrow will be 2 years since my bc diagnosis. I only consider June 19th as my cancerversary as that is when I had my last chem, so from that point on the waiting game began. All my checkups so far have been fine including the MRI which I pay for on my own (I don't trust mammograms to detect the fast-growing TNBC, which took my younger sister's life 7 years ago).
I am so very, very sorry to hear about Karen's (OBXK) situation. I am keeping her and her family in my prayers and I hope she is being kept comfortable. She is such a nice and helpful contributor here - you can tell by her smiling avatar that even though she was dealing with so much, she was still upbeat. I am sending out big hugs to Karen and her loved ones.
Minxie - so sorry to hear what you had to go through along with the bc. Thank goodness you are now on the other side of it and life will improve for you. Although we hopefully all have 50 years left, life is still too short to suffer through the negativity of jerks and a**holes who are not there to help us through this tough battle.
To all those who are dealing with treatments and side effects, good luck and try to stay optimistic - there are many, many of us who have been through this and are still going strong!
Doreen0 -
Hi All,
Even though I am new here, I can tell this is a very supportive group that cares for each other and I appreciate that.
Guygirl, I'm wishing you the NED on your tests.
My blood pressure has been running on the low side ever since my AC chemo on Tuesday afternoon. I've been sleeping a lot. Don't feel sick, just very low energy. I know I can get through this. Sipping Gatorade, trying to stay hydrated.
Kay0 -
Guygirl, congratulations0 -
Marsha - thanks for filling me in on the details of your chemo experience - that sounds horrendous, and it is very clear that chemo was not right for you. I wish you the very best. Glad that you are feeling better and are happier with your current doctor - that is important. Hugs.0 -
how stupid can you get? I went to the docs today with a nasty sore throat ( strep throat). The usual vitals were taken including blood pressure. I know I was thinking about offering the " right" arm . Only when the nurse left did I realize I had her take bp on my cancer side
. I have not ever done that before.0 -
Gilly, it happens sometimes. Could you tell if it effected you LE any? I hope your throat is okay.
I'm just hanging out today, day 3 post AC infusion. Things seem to be okay. I'm hoping I have enough enegry to go to a ballroom dance tonight. We will just have to see how this afternoon goes. These dances lift my spirits.
Kay0 -
going to chemo #3 tomorrow. Hope for the best!0 -
Oops ..somehow missed keeping track of this thread!!
so happy for you mags, and how are the others doing!
thanks so much Jenjen and thanks a lottttt InspiredbyDolce for the inspiring information! will let you know my email address...
completed 3 rounds of dose dense AC! Bad... terrible nausea, couldn't take tablets...basic ones given through injection...one last round of AC left and then begins dd taxol..
all my love to all of you and lots of hugs!! you are always in my prayers and i hope they come up with targeted treatments for triple negatives very very soon.... it seems some 82 trials are going on for tnbcs!!! some hope..:)
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BanR,
Our diagnose and treatment is so similar. I am just 1 AC behind you.
All the best!0 -
Good afternoon everyone, this is my first post but i have followed along for a little while. I am 48 years old and was diagnosed in June of 2012. I had a mastectomy, reconstruction chemo and radiation. I finished my last treatment at the end of February 2013. I have struggled with the fear of reocurrance and while I try to remain positive I have been having some achiness and pain in my legs and it scares me. I don't want to be afraid everytime I hiccup and i don't want to allow my mind to play tricks on me either. During the chemo the docetaxel really affected my legs and feet and I now take some medication for nerve damage so i struggle with whether this is different or more of the same. I had hoped that as time went on I would feel more relaxed and confident in the idea of being "cured" but in some ways it is harder in the sense that the clock is ticking and it is only a matter of time. I try and live each day to its fullest and not dwell on the possibilities but there are those days when that is so very hard to do.0 -
joannh14 - I totally get what you mean about the worry of recurrence - we all have our moments of doubting if we are cured or not? Do you see yr oncologist every 3 months? Perhaps you could discuss your fears/worries with him or her. Personally I don't discuss my fears too much with my MO because I don't want them to prescribe anti-anxiety drugs or anything like that. I feel my body has had enough assault with chemo drugs without adding any more. Having said that, I do know there are many women who need anti- depressants and/or anti-anxiety meds to help them along the journey. I have heard that the first 18 months after completion of treatment are the hardest to deal with emotionally, so perhaps with time, you will start to feel better. Did you get neuropathy? That can take some time to go away, but I have heard that it does go away with time. This forum is a great place to air your worries, concerns and fears - we are all in the same boat!!0 -
Hi Jo-annh14,
I finished treatment January 2013 and can totally relate to everything you mentioned from pain, neuropathy, fears, etc. It is certainly difficult to know who to turn to with different ailments. I finally went to my family doc and asked him straight out what is the process for reporting aches, pains and symptoms and he told me that he is my advocate and I can come to him for anything and he will take my concerns to my onc - I find this works best for me because he seems to have better access to the onc than I do. My onc only wants to see me once a year because I see my surgeon every 6 months and my surgeon is much better about ordering tests and scans than my onc is. But she has operated on every one of my family members who had breast cancer and knows our history.
Sometimes I would love to have a place to express my deepest darkest fears of this journey without someone telling me that I am strong or that I have beat this thing. I thought of a diary but would never want any of my family to ever read it. I guess we just continue to do the best we can coping and that is all we can do. I know I was stronger during treatment than I seem to be now because I had a purpose and timeline to complete treatment and now it just feels like I am now just waiting for it to return.
Wow, this certainly turned out depressing when all I wanted to do is encourage you. Lol,
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Hi All,
I can certainly relate to the post treatment fears even though I am still in the initial treatment phase. I feel like going through treatment is the easy part of all this. It's the 3-5 years afterward that will be hard just living with the uncertainty and trying to figure out if a new ache or pain is cancer or just normal ups and downs of growing older etc.
My husband and I love to bicycle and had been training for a year-long trip around the perimeter of the US when I was diagnosed. I'm hoping I will have the strength to bicycle after treatment is over and while it's unlikely we will do a single long trip, I'm hoping to do lots of shorter ones in between checkups. It's something that I think will help me pass the time in a way that will keep me so involved with what I'm doing that TNBC might just fall off my radar screen at least for a moment or two at a time.
Since I know I have to get my nodes removed on one side and will be having radiation in that area, I'm looking at tadpole trikes to ride after treatment rather than an upright bike. I figure a recumbent trike will be less likely to induce lymphedema and if I end up will lymphedema a recumbent trike would be less likely to aggravate it. If anyone here bicycles with lymphedema, I'd love to hear about your experiences.
I realize I'm going to need to be doing SOMETHING that really occupies my mind over that 3-5 year period so I don't wind up completely depressed and house bound. For me, multi-day bicycle trips would be perfect....assuming I'm physically able to do them. I have a ways to go before I will know if I'll be up to that, but it gives me something to look forward to over this winter of treatments.
I am currently on day 8 post AC infusion, round 1. I basically slept round the clock for the first 6 days. Yesterday and today are the first days that I have done much more than sleep and nibble on food. We did go the the ball room dance on Saturday night that I wasn't sure we'd make. It was nice, but I didn't dance a lot and we left half way through because I was so tired, but it was still nice to get out and listen to some live Christmas music played by a big band.
Today, I went to my first local cancer support group meeting. I live in a small town so there is no breast cancer support group. Everyone was really nice and I'm sure I will go back for their monthly meetings. I'm new to the area and I could really use more support face to face. We had only been living here one month with I was diagnosed, so in addition to getting treatment, I'm working on developing friendships.
Wow, this got to be much longer than I had planned, but I'm really glad this TNBC thread is here.
Kay0 -
A friend of mine got mammogram results today, said everything was clear but she has dense breast tissue. What exactly does this mean?0 -
KS- It's normal for some women (especially younger women) to have dense breast tissue. On a mammogram it comes out like 'white clouds' on the picture. I have dense breast too so when I go for my mammo, I have an US with it after to see if nothing is hiding under these "white clouds"...
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She is 40 and said this is the first time they have ever told her this. I did read that woman with dense breast are high risk for BC. Which sux! I told her to just call her dr Monday and get better clarification from him. Thank you!0 -
Hello, I was just recently told of this group. I was diagnosed as triple negative but for some reason there is still and issue with the HER2 and the surgeon and Oncologist are waiting for clarification on this. I had genetic testing this morning, met with the oncologist this afternoon, met with surgeon on Tuesday and am now scheduled for the catheter placement next Wednesday and they are calling me Monday about a pet scan. We are just three weeks into this whole thing and we (my family) are just reeling from all the information and how fast all of this is moving. It is hard to take it all in and it seems as if each week it gets worse and worse. We are essentially overwhelmed. The tumor has about doubled in size since I found it out and I suppose that is why it is moving so fast. or does it all go this fast. Any way glad to have found all of you and best of luck and blessings to all of us.0 -
tekwriter welcome to the boards, sorry you are here. You will find great advice from a great group of ladies. Things do move fast, this cancer is aggressive and has to be attacked hard. I am almost a 3 year survivor. I was stage 2b, grade 3, I did 6 rounds of TAC, then lumpectomy, then 28 radiation treatments. I am cancer free! Each and every situation is different, you and your dr's will choose what is best for you. Good luck and God Bless you!0 -
ksmatthews - I have been through 3 ACs. This chemo is really destroying. I wonder when I can ever live my life normally again.0 -
Jianchi....you will...give yourself time. One day at a time, one treatment at a time.
I am home and recovering from my latest reconstruction surgery. It went fantastic this go around. This was my 6th surgery with this surgeon and she is amazing. I cannot wait til I can say "I am done"
Maggie0 -
Tekwriter, I'm glad you found us so quickly. I was diagnosed in late July and well remember those feelings of being totally overwhelmed. I was so scared that I had to get my sister-in-law to become my designated web researcher for the first couple months. It's good if you can research on your own if you are ready, but if not, it's good to get someone you trust to research questions for you and feed you the answers. http://tnbcfoundation.org/ is also a good site for technical information. I didn't like going on it in the beginning because it can be overwhelming, but there are some very knowledgable helpful people there too. I'm now active on both sites, but it took me about three months before I could do it. If you live in a small town (like I do), you may want to investigate going to someplace (like UNC) for treatment because they will have a lot more experience with TNBC. Everyone's personal circumstances are different and it may not be feasible to drive any distance for treatment.
I honestly think I was operating in "panic mode" for at least until after treatment started. Everyone told me that waiting for test results is the hardest part, and so far, that's been true for me as well.
I'm just finishing up week two of my first AC treatment. This second week has been so nice. I feel almost normal. After 12 weeks of taxol, I have very little hair left. I want to shave it, but my husband is out of town and he has asked me to wait until he gets back tomorrow night. In the meantime, I've been watching you-tube videos on scarf tying and how to do eyebrows. My eyebrows have been hurting a bit all day, so I think they are not long for this world either! Oh well. I'm just glad I feel as energetic as I do.
I haven't made any Christmas plans because I wasn't sure how bad the AC was going to be for me. It's going to fall on my "off" week of AC, so I'm now thinking that I may actually be able to do something. Most likely, my husband and I will go visit my mom in assisted living that is about a half hour's drive away. My other relatives are much further away, and I'd hate for my mom to be alone over Christmas. Visiting with her there, would be much easier than having her to our place and needing to cook a meal, plus drive her there and back.0 -
Thanks every one for the welcome. I am grad to be here, well as glad as I can be. I live outside of Winston Salem and right now I am going through the Novant Health which has a comprehensive cancer program. I do like my surgeon and Oncologist. Wake Forest is here and they are a premier cancer center and if I were going to travel I would surely go to Duke which has been the gold standard all of my life as a North Carolinian. Novant is using a multidisciplinary approach. There are nurse navigators for me to call for help and there are daily team meetings between the Dr.'s and Surgeons for those of us in treatment so all are on the same page. I found the Oncologist to be a kind man and very hopeful. I sort of wanted to hug him before I left. The surgeon was straightforward and I like her a lot also, she was bright and funny. Is AC chemo? I don't know about the research. I haven't done a lot yet. I have a friend who normally goes to appointments with me. She may be good in that respect. I think I will ask her. Thanks to all for your advice. If there is anything I can do for someone please ask.0 -
KS- 40, is considered young for mammograms. That's why, alot of times for women our age (40ish) they pair it up with an US, because we have more dense breast. I don't believe women with dense breast are more likely to get BC. It's just more likely that IF they do have a BC tumor, it can be hidden in the dense breast tissue and could be missed by a mammogram. That's the reason for getting the US. Maybe your friend could ask for one...
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