Starting Chemo in November 2017
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hope , tried gold bond but to be honest they have so many dif ki ds of gold bond, wasnt sure which to try , i am going to dermatolist tonight so will ask his opinion
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Iris...the Gold Bond I have is specifically for feet. Let us know what the dermatologist recommends.
Hope
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thanks hope, will look for that version of gold bond.
So saw dermatologist last night as i could feel 2 funny patches on my head and my nurse practitioner wasn't sure what it was. So the derm did biopsies of my funky scalp patches and seemed knowledgeable of the wierd dry skin from xeloda. So she gave me a steroid cream for use morn and night, return to see her in two weeks. She thinks i should be using one of the guppy creams like aquaphor or one like that so trying dif combo! The aquaphor or bag balm are liked by both derm and onco
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can we say if I'm grade 3 cancer cells, the chance of recurrence will be too high? I did chemo but still high after the pathology check that beast. can we say if you are grade 3 you should wait recurrence? I can't sleep.
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Hope99 - Here's a link from the main site you may find helpful: https://www.breastcancer.org/symptoms/diagnosis/cell_grade
"Grade 3 or high grade (poorly differentiated): Grade 3 cells look very different from normal cells. They grow quickly in disorganized, irregular patterns, with many dividing to make new cancer cells..... Having a low-grade cancer is an encouraging sign. But keep in mind that higher-grade cancers may be more vulnerable than low-grade cancers to treatments such as chemotherapy and radiation therapy, which work by targeting fast-dividing cells."
So higher grade does not necessarily mean higher risk of recurrence. Are you doing radiation?
Your oncologist is the best person to answer all of your questions about your specific diagnosis and prognosis and it is his/her job to do so, so ask away!
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Hi Magari, yes I already on radiotherapy now, 10 out of 25 cycles. I also did 6 cycles chemo. I know it's good to take chemo if you are grade 3 but after that I don't know if my body will develope new cancer cells due to grade 3, by other word recurrence.
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Hope, I think there’s no way to really know. The chemo, radiation, surgery are designed to get every last cancer cell out of our bodies and the hormone therapy is designed to keep anything that may be left behind from growing. So we just throw everything at this thing, and hope we’ve got it. My tumor was grade 3 too, but I’m hoping this year of treatment has done what it needs to do to wipe these cancer cells from my body. I also have a genetic risk, so it’s possible I’ll develop a new cancer. I’m just hoping to improve my lifestyle to do what I can to prevent new cancers.
My mother had breast and another separate cancer
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Hope99 - As you can see from my stats, my cancer was also Grade 3. I was told by the oncologist I asked about this that my own personal risk of recurrence is about 5-7%.
I remind myself that my risk of being in a car accident is much higher than that. And that I've had surgery, done chemo, am receiving targeted therapy, and live a healthy lifestyle - so I'm doing what I can. The rest is out of my control and I will not spend every day worrying about what *might* happen. I intend to enjoy my life now, more than ever!
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my original diagnosis was dcis, grade 3. Actually when mine returned, i ended up switching docs, it was almost like my original onc did not or ever took my cancer very serious, but my surgeon had said if mine ever returned after all we aimed at it, surgery, rads and then 5 years of the al.........it would be nasty. Well, it sure is that
Then again not given up! Got a great doc now
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Agree with Magari. We do everything we can with treatment and lifestyle and then we have to live our lives. I too am more committed than ever to enjoying my life. We all have limited days on earth. I find something to be grateful for and to enjoy ever day, no matter how small. I don't want my life eaten up by worry.
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Hi everyone. I'm sorry I've been MIA for so long. I need to join the club of dealing with lingering side effects! In April (I think I posted here), my left (cancer side) breast started swelling, and I developed cellulitis over the lymph node scar. I was on antibiotics for 2 months with no change. Never had any fever. My blood work was always perfect.
PS ordered breast MRI and the diagnosis was likely phlegmon (pus/infection), so he decided to clean out the pocket and replace the implant. When he got in there, he found hematoma (blood), not pus. Extremely odd 7 months after surgery, but seemed to be good news. Blood didn't imply a raging infection, and the cellulitis likely came from just the fluid under my skin for weeks. He referred me to an Infectious Disease doctor, who kept me in the hospital for 3 days on IV antibiotics, then sent me home with a PICC line for 14 more days of self-administered IV antibiotics. This was all precautionary because no bacteria grew in the culture of the fluid they removed from my breast. The cellulitis cleared really slowly, and I still had a little red streak at the end of IV antibiotics. ID put me on 15 more days of oral antibiotics, which brings me to last Friday. The cellulitis still wasn't clear, and I thought it looked a little worse. ID called in another 15 days of antibiotics. Each time, they've changed drugs. I've had Keflex, Clindamycin, Vancomycin & Cefepime IV, Doxycycline with Cipro, and now Doxycycline with Augmentin. I go back to the ID doc tomorrow. I'm afraid I'll have to lose this implant and go without one for several months. I'm reconstructed on the other side and not having any issues. Same type of implant, but no nodes removed. Due to the BRCA mutation, I had a prophylactic mastectomy on the right.
I'm worried that something else is going on. It's not acting like Inflammatory Breast Cancer (thank goodness), and the MRI results were benign, no tumors, no abnormal looking nodes. I think I'll cry if they put me back on IV antibiotics. It took 2 1/2 hours morning and evening to infuse, and I had diarrhea and painful gas just like with chemo. But if that would clear it, I would take that over another surgery to remove the implant, so I don't have to make decisions about future reconstruction or going flat. Ugh. My mom has had her implants 18 years and she lost 16 nodes. Why am I such a mess?
It's funny how people say - you look great - and I think, you have no idea how hard this, and I'm 6 months past chemo.
I do have super curly hair! Still wash and go!
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Hi girls,I had to reset my password to get back on here. I couldn't remember it!
Proudtospin - I started getting a case of dandruff with some scaliness on my scalp as my hair was growing out, so I started using a dandruff shampoo on it and it's helped a lot to condition my scalp. Even with FL humidity, my skin is very dry.
I seem to be doing ok with the Letrozol. No dizzy spells or any other problems. Will see my oncologist in about two weeks.
Orangedaisy - my hair is doing the same thing, so curly, but I’m still too embarrassed to be out in public with this hair. I took a Wahl shaver and shaved the bottom back, then the sides above the ears. I’m trying to get the top longer. The top back is too clingy and hugs flat - so my head looks flat in the back. I do wear it around the house and neighbors have seen it this way, but still wear my wig most of the time out shopping. Sorry you had such an ordeal with cellulitis - antibiotics can be brutal. I react the same way to them.
My back has improved, but there are days I wear my back brace to cope with pain. It’s off and on. I’m so frustrated with it still. Like everyone- I try to live my days the best I can and try not to worry about cancer.
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Blair your hair looks beautiful. Mine is so short in front and stands straight up not top, but I could never tolerate the wig. I’ve had my stylist trim it twice to keep it from looking messy over my ears and down my neck.
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Blair and Orangedaisy you both have great hair. I confess I envy your curls. I like curly hair so of course mine has grown in absent curls. Mine is pretty much the same as it was before with the lack of curl and is the same color, etc. Well as they say a bad hair day is better than a no hair day. The hair that was saved through cold capping isn't worth much; it's dry and very damaged. I call it cotton candy hair.
Blair sorry you are still frustrated with your back. At least it is off and on instead of just off so I guess it has improved some? Fingers crossed it continues to get better.
Orangedaisy you have had such a time ot it! Thank god you don't have inflammatory breast cancer. Experiencing anything close to the affects of chemo sounds challenging. I hope you soon can put this phase behind you. At this point I bet thinking about any sort of surgery is hard. Gosh all we want is some semblance of normality. I hope you arrive at yours soon.
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i have seen women arriving at the hospital with coolers on wheels, guess that was for cold capping? I guess i was too rattled and did not think of it. Sort of like the way it has come back in but sure would like the curls. Well my feet do look better and hands also, reconciled to using the goopie cream more.
Back from gym, i always feel better after that , my upper
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Proudtospin, yes, the coolers are for the cold capping. There was a young woman cold capping at my final chemo appointment. She had long hair, and it still looked great. My oncologist said her husband was militant about changing the cap when the temp dropped below a certain level, and it was the best she'd ever seen the results.
I saw the ID NP yesterday. More bloodwork. She said they might send me for an ultrasound because it's obvious my breast is swollen. She wanted to see my lab results and talk to the doc. She said the cellulitis didn't look as bad as she feared it would when I called last week to come in. I said, I want this fixed. If it's even slightly worse instead of better, I'm coming back in.
Today, I'm wearing a heavy duty compression cami that just arrived in the mail. Hoping to squeeze some of that excess fluid out!
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Orange daisy and Blair! You guys look fabulous! I think you can totally be out and about in that hair.
I have less hair than you do, and it's been a couple weeks now where I've been out uncovered more regularly. It's sure hard to be a wallflower with this do!
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Thanks to all for hair compliments.
Orangedaisy - that’s got to be scary that your swelling has gotten worse, but it sounds like they are investigating it more thoroughly. I imagine it’s also uncomfortable. Hope it goes away soon! Keep us posted.
I had what felt like an underarm swelling for a while, but I couldn’t see anything that obviously wrong. It hit me that my back brace (front belt part), was hitting under my cancer breast most likely irritating it especially as I sat in a chair. I still have what feels like knots where my stitches are on my cancer breast, but nothing came up on my 6 month mammo. Just the questionable spot on my right breast which will be rechecked in November. I don’t feel anything wrong in that breast. I think when I see my OM that I’ll ask her to read my radiologist report on that - I’d like to know what area is in question. They think it’s benign, but it’s one of these “we aren’t sure”. Kind of feel uneasy about it because nothing was explained to me in detail
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And apparently, I've lost my ability to smell things. Thanks chemo!
Anybody else?
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Hi.. I noticed we started treatment about the same thing with same diagnosis. How are you doing now? I started chemo Nov 21 2017 and ended Feb 12 2018. Had a MX and tissue expander placement on March 20 2018. Started radiation on April 30 ended June 11 (30 sessions) currently on herceptin, lupron and about to start femara July 1st (today) will start filling the expander hopefully in 2 weeks time. Such a lot gone down the road and still much to do. Phew..
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meowmommy, I’ve missed a few poopy diapers, so I do think my sense of smell is affected
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funny but i lost my sense of smell about 5 years ago after sinus surgery, guess i won't have that new thing
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Hi all, hope you are ok. really I need your support to help me and clarify my mind and fears, no one better than you to listen and provide information to share 💔.
today I saw my doctor to talk about my next therapy which is hormone, I'm still on radiotherapy. The doctor told me, according to your status, you will take 5 years tamoxifen pills + Lupron Depot 3.75 mg vial. one injection / month for 5 years also. the reason is because I was pre menopause. but actually it's already gone after second cycles of chemo (around 5 months from now). he told me that I will provide your treatment as a premenopause!
also he told me that I'm in high risk of recurrence because I had high ki-67 ( 70%) and grade 3 . I told him I had also high ER% and PR% with no Her2 . he replayed the same: still high risk! he shocked me. when I read yours replay and articles on internet they told the positive receptors patients have good outlook and prognosis. why he told me your recurrence rate is between 20-30%? I did chemo, radial mastectomy and radiation and today is my fisrt day on tamoxifen and Lupron (LHRH). why the recurrence rate is high?
he told me the ki-67 is subjective but we take it in our account, if it's high we will ask chemo, if it's low may not ! what is the specific factors to decide if my cancer is aggressive or not? he told me I'm stage 2a, even if the chemo did better, he will act me as stage 2, no down-stage . I had only one lymph node after chemo in my pathology report out of 25 out!
please share your experience. I really shocked and cry.
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hope, I don’t know enough to question what your MO is telling you. However if you’re leaving the appointment this distressed and confused, I think it’s worth getting a second opinion. Even if the information is the same, another doctor may be more adept at explaining it and addressing your fears.
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Hope99 - my ki-67 was high like yours. It said 60-70%, but did not state exact number. I was also grade 3. My ER and PR were also 90 - 95%. My tumor was smaller than yours, and I had no lymph node invasion. It makes the recurrence a little worse with an invaded lymph node as that means those cancer cells have traveled to your organs faster than it would just through bloodstream. My initial recurrence rate was 18% WITHOUT chemo. With chemo, it was to go down to 8-10%. However, I did not do my 4th treatment. When asked about the recurrence rate with the one less treatment, my OM could not tell me what it was except that the three treatments would bring it down less than 18%. So I figure I must be around 13% recurrence, but nobody knows. I can only guess your recurrence rate is a little higher because of the lymph node invasion. You still have 80% chance of no recurrence - so don't worry like it's bound to happen. We are ALL in the risk boat of unknown circumstances. You have battled this better than me. As Star suggested - you could get a second opinion if you are so worried. Also, Tamoxifen is typically given to pre menopausal women, but can also be given to post, in some cases.
Meow - I can smell. I think taste and smell are somewhat related if weak. You probably just need more time since chemo is still probably lurking in your body. Hope it improves soon.
Welcome Princess Meg! Hope your journey goes smoothly- this is a great group here that have gone through a lot
Ok - Dr. Blair put in her two cents here! Have a great day.
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Hi Blair, when my oncology said that my recurrence rate is 20-30%, he didn't tell me it's with or without chemo. I asked him this percentage before or after treatment and he said it's after because the cancer is present before! when I used calculator it showed the mortality rate is 9% after 15 years. this percentage not care even you are free-cancer or locally/metastasized cancer back. the sentence that written by calculator said you may be dead after 15 years with no details if you are healthy or sick. cancer or non-cancer and that's not encourage which is bad for me.
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Hope - we probably have a higher risk being killed in an auto accident or heart attack. Try not to worry too much - we all end our lives in different ways eventually. Science and doctors just can’t tell us individually how long we will live. They can only guess through statistics what our chances are with this disease, and where we stand in it is really up to God. We just have to fight it the best we know and hope we survive many more years. Try to think positive that you are beating this disease. Everyone alive in this world has a risk of any type of cancer - we are no different
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hi everyone, I had my last day of radiation! It feels weird to be down with most of my treatment. I’m on Tamoxifen until I have the prophylactic ovary removal (not scheduled yet). I also need to complete reconstruction on my left (prophylactic side) and do nipple recon on the right (after skin heals from radiation).
I’m out and about regularly without a headcover now. Where can I donate them?
How are you doing, hope? How’s everyone else?
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Star - I donated wigs, scarves and other items to my local Breast Health Center, where they hold the Look God Feel Better workshops. After the workshops, they allow participants to try on donated wigs etc. and take whatever they choose free of charge. They thanked me profusely for my donation, and it felt really good to contribute something to help other women going through treatment. I even got a tax receipt!
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I have several caps too I should donate, but I may wait a while, or save one or two that I liked best. Still have a fear of something returning. However - can’t see myself going through treatment if I had a return.
Saw my OM yesterday and she told me to take baby aspirin to help fight recurrence and exercise that supposedly fights 20% recurrence. Never heard of this in all my reading about recurrence risks. I told her that exercising didn’t prevent my breast cancer, but she replied that was different. Not sure if I believe all this. I’m on blood thinners and gave up aspirin in addition to the thinners because of the intense bruising. She said it was up to me. I will exercise, but that’s more for my heart, not really for breast cancer recurrence. It’s a crap shoot what to believe in. There is definitely not enough concrete research. What do you all think of this?
My system seems to tolerate Letrozole just fine. I ran out of it, so will be off a while until my 3-month order arrives through mail order. I guess being off a week or sodoesn’t hurt - so I was told. Doing ok with the Foximax (alendronate). Sunday’s are my days to take it. I forgot last Sunday, but took it Monday, then will go back to Sunday.
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