Anyone starting chemo August 2016?
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What's wrong with me...I seriously thought I responded last week! I must have read through it and got side tracked- I'm sorry!
Lyn- I didn't even know they had lymphedema pumps...I realized I've been totally slacking on the manual drainage. I think my arm is fine, but who knows so I need to get back on track with that. MO said that she's just going to monitor my blood counts a little closer (every 2 mos right now)- thinks low counts are still residual issues from chemo thanks for asking. Also no scans or anything for me- just checking my skin, seeing how I'm feeling and I'll do an MRI on my fake boobs in January. I agree with the dogs! I will always be grateful for mine and never forget her laying next to the bed for hours and hours during chemo- me worried she needed to eat and go to the bathroom but too weak to holler to someone to take care of her lol. Mine is 6, has had 2 knee surgeries (before my cancer) and now has 2 heart issues. I'm happy she's made it to 6, and hoping she can stay healthy enough for her 7th bday in April
I get the how to react to people. Everyone asks how I'm doing. I don't want to be one of those people that all they talk about is cancer. I remember thinking that before all of this. Everyone wants you to move back along with your life, but you don't feel the same. Here's a classic example- one of my daughter's teachers was diagnosed with early stage BC, and went for the BMX. it was DCIS I believe so no chemo or radiation because of the aggressive surgery. I would text her to check in. Texted her like a week or so ago. She's been back at work for a month and literally wrote "I almost feel like nothing happened, back to normal". Ok what?! LOL....so it definitely made me realize all of our other treatments and complications have wreaked havoc on our bodies.Annie- I was just speechless when I read your post, it's beyond frustrating that this is happening. You and your family have been through enough! I'm thankful you shared....please lean on us --- we are here for support and won't leave you. Let's get that crap out of you once and for all. I'm so sorry. You're not the only one- not me but another one of our friends from here had a reoccurrence as well but I think at this point needs to just focus on life and hasn't been on the BC website at all. Thank you for continuing to lift our spirits with beautiful Josie!! You have been an inspiration --- all the crap you have gone through and now continue to go through keep a lot of us motivated and moving forward....thank you.
Kechla- thank you for sharing your story, it's so appreciated. I love the pic and story of the gingerbread house! Is that your daughter? Happy your pup is doing well.
Cali- PLEASE keep us posted on both of you. This is getting ridiculous. Can you push to get in sooner? I can't believe that they can't make this a priority- its not unusual to do both at the same time- that used to be my "regular" appt every year.
So many prayers out to this BC family here....all my love ladies.
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hello ladies. I am far behind. Chemo brain and Tamoxifen fog are the pits, and I haven’t signed on much. I’ll have to catch up soon. Just wanted to wish you all a belated Happy holidays, Merry Christmas.
I popped back in for a request of Annie. Someone on one of my FB groups has a friend who is pregnant and going to be going thru chemo. Would you be willing to connect at all? If not I understand as well.
Will catch up soon. Wishing everyone a wonderful New Year
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Hope everyone had a Merry Christmas season and a Happy New Year 🎉
Sensitivehr ... Great picture/card ...so cute 🐾
Good news my daughter in law got her results and it was negative...cystic fibroids! Yay
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Hi DaraB,
My mother is expected to start chemo from next week (59Y), AC+T for TNBC. 4 times AC with 2 weeks duration and 12 weeks T. She is a diabetic and we told Onco. already and he said its fine and she should go for chemotherapy. her sugar levels will be 140-200 (pre and post) respectively.
I read your post where you say
"The night after her infusion, it would always go into the 300-400. Her doctor told her that if it hit 500 she needed to go to the ER."Just wanted to know if your sister also took AC+T which elevated blood sugar levels?
(I also sent you a private message on this, just in case you missed the thread)
Thanks a lot for the support from all great people out here.
God bless all of us..
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Sensitive- what a great picture, so glad you checked in- definitely agree our bodies won't be the same again. Hang in there. Just an fyi since you haven't had chance to scroll back and it's hard to remember everyones posts! Annie had a local reoccurrence and was suppose to go in for surgery I think last Friday. So give her some time to respond. She'll be back doing chemo again. Annie we're thinking of you!!! Please let us know how you're doing!
Cali- awesome news- I was just thinking of you and had to scroll back to see when your mammo was going to be-forgot you have to wait.
Let's make this a happier new year to this group!
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Hope all survived the holidays. You've all been on my mind lately, especially those awaiting results or procedures. My brother is undergoing lung surgery today for cancer. They will remove one lobe of the lung but then hopefully thats it, no chemo or radiation.
Please keep us all informed. We've made it this far together and this small but determined band are here to help and support any way we can.
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Fabulous news, CaliGirl!
I'm sorry that your brother had to have lung cancer surgery and hope his recovery is going well, Dara.
I know I haven't acknowledged everyone's notes. Having my friend's dog in my house has been challenging because I'm a very light sleeper and she awakened me most nights for the past 2 1/2 weeks. Fibromyalgia makes sleep ridiculously important and I've been exhausted. I took her to her breeder yesterday, but it will take some time to recover. How are the rest of you doing with fatigue?
I had my PT re-evaluation and f flunked all three of my balance tests again although there was improvement in the one with my eyes closed. I wish I could go back and refuse chemo as my instincts screamed at me to do although I'm glad that I've "met" y'all!
Lyn
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Hi Ladies-
Just thinking of everyone....Cali, I think you should have had your screening by now- please let us know how you're doing if you can.
Lyn- hope things are settling down for you.
Dara- hoping your brother is recovering well from surgery.
Annie- thinking of you!!
Just wanted to post a quick note that you're all in my thoughts...
Kelly B.
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Kelly B., how's the arm doing? Despite the pump, my affected arm is now 23% larger than my normal arm. Very disappointing. 💩
Cali, I echo Kelly B.'s inquiry and hope that all is well. Dara, I, too, hope that your brother's surgery went smoothly.
sensitivehrt, I don't think I commented on the great Christmas card photo. Super cute!
Annie, please check in when you can. ❤️
Lyn
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Hi all, I've been out of commission for a couple of weeks. Both my husband and I got sick after Christmas. We tested positive for influenza A AND B and bronchitis. This flu virus this year is really nasty. Finally feeling about 98%.
By brother was finally released on Friday night. He originally thought he would be in for 5 days but that stretched into 3 1/2 weeks. He's doing remarkable well though. he's home by himself (Florida) but has a really large support system with friends. It's been recommended e also do chemo and rads but he's going to get a second opinion. He was told the lung cancer was squamous cell. I had a squamous cell cancer removed from my wrist but never knew there are squamous cancers that are not skin cancers.
Has anyone heard from Annie in the last couple of weeks? Thinking so much about her and hoping maybe I just missed a post.
Hope the rest of you are doing well and just enjoying every day. My hair has been growing like crazy lately. The way I can really notice is the gray roots that appear after each color! LOL. Hope you're all well. A big hug to all of you.
Dara0 -
Hello!
I am doing okay. Mastectomies are not fun! Whew! I did stat back at work last week - a bit slowly, and this week I am trying to make it full time. We will see. I tend to get exhausted in the afternoons. I am three weeks and 3 days out.
I meet with the director of oncology and Siteman today for second opinion on chemo. I'll let you guys know whjat they say. I think I am hoping for a trial with Carbo and immuno therapy.
Dara - so glad you brother-in-law is doing better!
Lyn - I really think all of my chemo se's are better over time. My word recall has greatly improved over the last year and I barely have any neuropathy left. Actually, right before I had surgery I though that I was finally feeling like myself again - full energy, brain power, etc. Oh well, here we go again. Hopefully I can feel the same way totally cancer free when 2019 starts up again.
Sensitive - you look great as always!! Of course feel free to send your friend my way. I would be happy to friend her on Facebook if she isn't regular here.
Much love to my sisters!! Thanks for keeping me in your thoughts and prayers
Annie
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Dara, two kinds of flu AND pneumonia??? ACK! I'm glad you're feeling better.
Annie, so good to see you! I'm very sorry that you've had to have a challenging surgery and are looking at chemo again. This stupid disease is cruel and unfair. How long until you can safely hold the baby again?
Lyn
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Annie, so very glad you are doing well post surgery. Just be careful you don't overdo. I know in an earlier post you said you felt something was wrong before the doctors confirmed the recurrence. Would you mind my asking how you knew something was wrong? I've been experiencing some pain under the arm by my SN incision and also under the breast I have a spot that is like on the chest wall that is very tender. I see my oncologist in a couple of weeks, but we all know how we worry at the slightest little twinge. Even after the mastectomy will they still need to do chemo again? I'm so sorry for that.
Hope all are doing well!
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Hi Ladies!
Annie- wow, back to work already?!! Amazing! Keep us posted on the chemo....also the immunotherapy- that really seems to be the future in treatment. I had Carbo....doable.
Dara- my goodness, I'm so glad you're ok that's crazy with the flu's. I'm really trying to stay healthy...the oncologist wanted me to get a flu shot a few months back so I did. I've had a cold this past week and fingers crossed that's going to be it lol.
Dara can you get into your oncologist sooner? This will start weighing on you, so why not get in there sooner and checked. I saw the oncologist and the breast surgeon in December...both examine and primarily are looking at my skin making sure there's nothing popping up. The team where I go recommends I get an MRI every 1-2 years, so I'm going next week. Whatever it takes.
VLH- My arm has been fine, I've been really slacking doing the manual drainage, so I got back on that this week. I fly this weekend from So Cal to Nor Cal so short flight, but got a new sleeve and she said to wear it 2 hours prior, and then 2 hours after (and of course on the plane).
Cali- please check in if you can?
Oh hair- just had my mop cleaned up....glad it's there of course lol.
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Hello Ladies. I've been trying to keep up reading posts, but haven't written in a while.
Dara, how awful. I can't believe you came down with all that at once. How is your brother doing?
Annie, I hope you are on the road to recovery. I had a BMX as my first treatment. If you have any questions, I'd be glad to discuss with you. Best of luck as you continue your treatment. Have they let you know your stage or grade? Did they find anything else when they did the surgery? I will be very interested to hear how immunotherapy goes. With a daughter, I keep hoping for better options for her if she is ever affected by it. Both my mom and I had BC even though I don't have any of the known genes...
Cali - Hoping you are doing ok. We are thinking about you...
Sensitive. I love your picture!!! I hear you on the brain fog. Mostly I feel good, but some days, I just can not process things normally. Especially in the evening. My doctor said to exercise both sides of my brain. The creative and the analytical side.
I feel like I have crossed a major hurdle!! After about 4 months of feeling bleh after my hysterectomy, I FINALLY have recovered some energy and am starting to feel like a real person again. I have started exercising again and have lost 8 lbs so far. Goal is about 25 more. What an uphill battle though. Between tamoxifen and surgical menopause, seems like I can just look at food and gain weight. Ok... I'm "looking" at it really hard. And they are nachos...
But hey, I didn't used to gain so much from a little indulgence. So now I am trying a lower carb diet (not quite as low as Atkins), and working out on elliptical and weights 5 days a week. So far, so good. Of course, now everything hurts, but it's progress!! I do have some recurring lymphedema with exercise, but so far it's been manageable. Mostly stays in my trunk, breast and shoulder and lymphatic massage seems to help. My dad has 1 more chemo appointment to go (in 3 weeks). Keeping fingers crossed that it gets everything.Hope you all have a nice weekend!
Kelly
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Howdy, Kechla! It's great to hear that you're finally starting to feel normal again. I need to get psyched to do the low carb diet myself. Even though I feel like I'm back to my pre-cancer diet, my blood sugar is consistently running higher than its ever been. I know that's contributing to my fatigue, yet struggle to do needed meal planning, shopping and meal prep. One of those cycle obstacles … I'm too tired to take the steps that will help me will prevent me from being too tired! Doh!
Is your dad doing well in terms of side effects? Are you doing your own lymphatic massage? I wad terrible at it so am glad that I got the pump.
Lyn
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My dad is struggling. Especially with his blood sugar. They just started him on insulin this week so we’ll see how that goes. I do my own massage and only as needed. I think mine is pretty minor in comparison to others. Seems to be limited to about 1-2 cup sizes at it’s worst.
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So, I had a toothache this weekend and was feeling around on my gums and found a lump above the tooth on the outside of my gums, so immediately my mind goes to cancer. Don't worry, it is NOTHING. I went to the dentist today and the pain is because 2 of my crowns were too big and causing too much pressure when I bite. They ground them down and it feels much better already. The lump was a bone ridge that he said I've probably had forever and just noticed it when I went poking around. I had a dentist appt for a cleaning on Friday and I was too worked up to wait 5 days, so I called and they got me in today. Usually, my rule for myself is that if it lasts longer than 3 weeks get it checked out, but finding a lump anywhere is just scary. I hate that I can't have normal aches and pains without worrying that it is cancer.
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Kelly, that's crazy about your teeth! I know what you mean though. I think I could get a pain in my big toe and worry that it's cancer!
My brother is finally home. He wound up being in the hospital for 2 1/2 weeks. He sound super great though and is getting a couple of opinions as to whether or not he should do chemo and rads. They removed 1/2 of one lung, but he sounds just great, no oxygen, and they say he should be back on the golf course in a couple of months! Amazing.
I'm loving our weather right now, mid 80s. I hope you're all staying warm and having a good week. Dara
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Immediately thinking any anomaly is cancer is definitely an unwelcome side effect, isn't it?
I'm glad the dental issue ended up being easily resolved, Kelly.I'm also glad to hear that your brother is hanging in there, Dara.
Lyn
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Hi ladies ... Sorry I have fallen behind on everything this month. I think of y'all because your a special part of my life and recovery. Thank you Dara for checking on me and snapping me out of my funk. I've been exhausted and a bit down this month. I feel over worked and overwhelmed but thank you for letting me rant.
Had my 9 month check with oncologist today. He said it can take a couple years to be myself .. My age is a factor... Love that guy he is always so darn honest no sugar coating it. 🙄
Dara ... You have had a rough month. Your brother sure spent a long time recovering ... Glad he is finally home. I understand how lumps and bumps scare us now. I had a squamous cell cancer spot removed from my left arm and I was surprised how many stitches I got for a small sun spot. Too many Summer's at Huntington & Hermosa Beaches. I guessing the baby oil with iodine wasn't wise either but we had no idea back then.
Lyn... You are right about this thing we call Cancer 😝
Annie... Glad your improving ... Seems you had to go back to work so soon. Always feel you have had it worse than many of us with all the extra things you have going in your life... I guess our inner strength has been tested for all of us.
Kelly...you are right those darn pounds just leap on me too!
Kelly B.. I did get my results last week on my lateral mammogram & ultra sound. It seems that seroma is just that ... They think it's just fluid so will monitor it. Maybe I'm just more sensitive to things but after what we all went through don't they know just keeping eye on it isn't very comforting?
I've decided if I have to be put under for any surgery I have a list of other things I want done, fix my third boob growing on the side by my SN, then reconstruct both of the girls so they look like maternal twins again, then do my left carpal tunnel procedure and fix my eyelids as long as I'm under ..lol
I was going over my journal that I kept when we were all having chemo, I kept it so I could keep everyone straight so I could pray for you all. It's stired a lot of emotions also showed me had bad I spelled and took notes. Hugs 😘
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Cali... your list for surgery extras is sure short! I'd also want an arm lift, tummy tuck, and (I know I'm showing my age here, but what is a Brazilian butt lift???) Those darn estrogen blockers do put on some pounds, and sure do make them hard to take off. Glad you're OK and I certainly understand the fatigue. I still get so exhausted!
Take care all and do something nice for yourself today! Dara
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Kechla- thanks for posting that! I think we all need some hope. I have to say I need that today as one of our sisters is fighting the BC that has spread to the brain and spine. I'm trying to be respectful to her privacy so won't say who it is, but say an extra prayer...and like I said great timing on the post!
Cali- so glad you're doing "ok" - I was getting a little worried since you were quiet.
I've sat in my plastic surgeons office so many times staring at the brochures while I wait that I even asked him once "can you do my eyelids with the reconstruct" lol. He said I was the 3rd person that asked that day. I do have to comment that having the reconstruct does not make me feel whole again. I think it might be my body shape, but having implants with no tissue, they just feel strange.
All is fine on my end, but I don't think any of us need to feel bad about our worry....it's legit. Love you to you all....
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Hi Ladies-
I wanted to share some sad news about the sister I posted last about. KZ1966 is gone. She was 51, and was a regular poster during our chemo days. She and I emailed every single day since Sept 2016 at least once a day....so my life changes.
She had a successful surgery, no signs in her lymph nodes and did radiation. In Sept she started getting headaches, and long story short- it was a brain tumor- metastasized. They successfully got it all, and she was being monitored. Literally 1 month ago, she was having leg pain and thought it was a pinched nerve. On 1/29, after a couple of MRI's she was told there were spots again on the brain and on her spine. 2 weeks later she's gone. She was in some pain, quite a bit at points, so I'm glad she's at peace. So hard to wrap your head around.
Fly free my friend.....
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oh I'm so sorry ... It breaks my heart. She fought the good fight for sure. I hope your doing ok? Please private message me or txt if you need to vent or share or anything. Heaven has one of our sisters 💕
This has been a rough week. I am a women of Faith but it does get tested. Went on a Pink Heals visit to a 30 year old mom who has Triple Negative Breast cancer like I do ...so we bonded. Then Tuesday a family we are close to suddenly got the call their son was found dead in his home. Eric was my son Tony's friend through school so it's been rough ...life is sucky sometimes.
But... Everyday is a gift
Love y'all 😘
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Oh Cali- I agree, sometimes life is too much! I appreciate all your support. I'm doing fine, have my tears as she was part of my routine, but like with everything we continue on.
What is the Pink Heals? I saw that on Cinco De Mayo, there's a paddle out in Newport Bay for BC....I've only done stand up paddling once (was a lot of work haha), but hmmmm. With Kathie gone, I realize that maybe I'm to focus on something else now, things need to shift, so I started a couch to 5k program on my phone. I need to get back to exercise and my health as I have things I want to do and places I want to go.
Ok how weird is this....I have the news on and the next report they will tell us about "chemo buddies". What! how weird that I'm typing to my chemo buddies.
All my love ladies.....
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I’m sorry AJB. This is what I fear most. We do everything we can and still this disease finds a way. Sounds like you were an amazing friend to her in her greatest time of need. Hugs to you. 😢
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Howdy, ladies! I'm sorry that I fell off the planet. I've been working both my part-time jobs the last couple of weeks plus had a weekend seminar so barely keeping my head above water. I was very apprehensive about going back to work, but, to my relief, it's gone quite well. I had about 30 minutes of chemo brain on Thursday, my "double duty" day, but my kind students were patient until my focus improved.
Annie, you're in my thoughts. Please check in if you get a chance and feel like sharing.
Kechla, how is your dad feeling?
How are you doing, Cali? I was sorry to read about your son's friend. It's nice of you to offer support and empathy through the "Pink Heals" program you mentioned. I can't even imagine coping with triple negative cancer as a young mother. :-(
Ajbclan, I was sorry to read about the passing of KZ1966. After dealing with all the challenges of treatments, it's so heartbreaking and unfair when they prove ineffective.
Regarding plastic surgery, add me to the list wanting work done. Dara, a Brazilian butt lift produces a full, high rear using implants. I've always had plenty of junk in the trunk so not for me! The 100 pound weight loss has left my stomach hanging midway down my thighs, a very attractive look! I would love to have my arms a normal size, the bags under my eyes could hold a small child and my sagging jaw line exacerbates my resting b**ch face. After all the cancer related surgeries, you'd think appearances wouldn't matter, but, darn it, they do! My hair is taking a ridiculously long period of time to grow. March 10 marks a year since my last chemo treatment and I just had my first haircut last week. The top sticks straight up & is still too short to sweep over my bald spot. This girl needs her comb-over! My heart goes out to the ladies with permanent hair loss from Taxane drugs.
Ajbclan, I'm sorry your reconstructive surgery doesn't make you feel whole. Could you elaborate on that? Is it that the implants feel foreign or the transition from chest wall to implant is unnatural or ???
It does no good, but I fret, wishing I'd handled my treatments differently. My original plan was a bilateral mastectomy with implants & no chemo. I backed out of the mastectomy because of concerns about tissue expander infections, a greater chance of lymphedema and the plastic surgeon saying I could probably only get a C cup, a size I last had in 9th grade at 110 pounds. I ended up having two lumpectomies & the nasty infection requiring IV antibiotics. Now, I can't fill must most C cup bras and the breasts have dropped a lot since reduction surgery. The lymphedema has left me my surgical arm nearly 25% larger than the other arm. The neuropathy presents a constant risk of falls and has so weakened my hand grip strength that I had to have a student open my Diet Dr. Pepper bottle yesterday. A "grippy" must always be at hand in the kitchen. My genomic study showed alterations associated with resistance to chemo and radiation and chemo only offered improved odds of survival of 6%, so I find myself wondering if I am experiencing these permanent side effects to no avail. I'm VERY grateful that I've had no evidence of disease thus far and it's still a relief to not have my breasts down at my waist, but I wish I'd made different choices in treatments and surgeons. Woulda, coulda, shoulda thoughts, away with you! Anyone else battling this?
Whew! That was quite a vent. Thanks for listening, my faithful chemo buddies. 💖
Lyn
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Hi Ladies!
Yeah, I didn't want to scare anyone, I think it's just a reminder for everyone else that it's not just an easy disease that can be fixed with chemo and surgery. We keep pressing forward, and that's what she would have wanted. I've popped onto Facebook to see posts from her co-workers/friends/family...wow, she really made an impact on folks lives- has been nice to read.
Annie- I too wonder how you're doing, we'd love an update when/if you can.
Kechla- you've been through plenty! I appreciate your thoughts.
Lyn- was so nice to read that you're doing pretty well getting back into work! It's a start in the right direction...trying to feel normal again right?! Oh...reconstruction lol...well, maybe it's twofold...I didn't have much of a chest in the first place (my plastic would remind me of that lol)....so it could be the whole having boobs now that fall to the side when I lay down?!! I may just not be used to having a chest haha.
Ok...hope you're all off to a wonderful weekend!!
Kelly B.
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