Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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Do you think....for I am Triple Postive...there are foods today i should add or avoid that are estrogen laden...??? I am thinking that if I can effect my hormone levels now...when I am only starting out that...maybe next year when it is time to start hormone therapy....I might have succeeded in changing the evidence of my E+ and P+ receptors. Such things have happened over the course of treatment tho I can't say why. Right now I am all over importance of food.....Experienced unexplained weight loss leading up to treatment and lost more when chemo first started...I have managed to put back on 10 lbs...with careful food planning....so am very pleased to see that I have those 10 lbs as my chemo buffer....
Feeling quite good on chemo so far...On #3. FEC-D
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{{{{JeriGrace}}}} Another big hug from me! I'm also thinking about rads, although I've got two chemo cycles to go still, and it is overwhelming me. To think about going day after day after day for so many weeks.
I have had people offer help in the beginning and not heard much since then. I called upon one of them a couple weeks ago to go to chemo with me while my BF was away. She said yes immediately and took the day off work. Others have no way to know what they can do to help.
I would also add it's okay if you want to call upon someone for help if that help is just to talk about things too. Let someone close to you know that it might be a big help to you if they could get together with you and have a chat. I had a horrible night one time with my boyfriend and called up a friend (in another state) who had offered to be an ear months earlier - she is a therapist. I felt bad calling her at first because she hates doing "work" with people outside work but she said she genuinely offered the help and wanted to be my support and that phone call was one of the best things that has helped me get through this all emotionally.
It's disappointing that your stepmother isn't showing more concern, but I want to also share something one of my students said to me. I told the students I supervise in the laboratory that I have cancer and will be going through chemo this fall and got very few responses from them. I was a bit surprised, but thought little of it since they aren't family and close friends. One of the students apologized to me a couple weeks ago and said that he didn't know how to react and deal with someone saying that they have cancer. He has since learned that is father has prostate cancer too. I'm trying to give most people the benefit of the doubt because they might not be prepared to handle this information in a way we might want them to, but it might take a little guidance from us to let them know what we need from them. In the case of my students, I ask them to do small jobs in the lab that require physical exertion (putting things up in high cupboards, potting plants, unpacking boxes) and they are glad to do it for me since that's how they can help me out in a way that fits our relationship.
JeriGrace - I hope what you are seeing is simply people not knowing how to respond and that you haven't really been abandoned by them - they're just hanging back, giving you space and waiting to see how they can help. Don't feel bad about needing a cry. You had a setback from the position where we all are - on the edge of what we can take! Your children worry about you so there is nothing you can do to lift the burden - but that's part of their love. Guilt isn't a healing emotion. Try to focus on the blessing of having your children through this. I hate the idea that any of us should feel guilty through this. We have enough to worry about with having cancer without throwing that onto the heap.
I will say one thing you can do maybe to change your thinking on this - you said you were sitting alone night after night with nothing to look forward to. You need to come up with something to look forward to! We all need that - some hope at the end of all this. When you're all done crying plan a trip or something fun to do in January, even if it's just a drive to a nearby park or museum.
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Jerri- Big hugs to you and I hope today finds you feeling better! I've had the exact same thoughts you have ..except towards my father ..funny my step mother has brought food and asked about me through text....my Dad was pretty good through the surgeries, but all through chemo he has inquired about me twice. Funny, no matter how old you get you still want the fatherly thing..which my dad being narcissistic as hell..I should be happy with him inquiring twice. We all are what we are I guess. Did you read that blog in the Huffington Post that I put link for? He says that you will be surprised at the people that support you and surprised at the ones who don't. That is me. I have had co workers from years ago come around..bring dinner..and still call. And I haven't spoken with these people in forever..The main diff I've noticed is my younger friends from work..I have 3 that are in their 20's. They all send text every week asking how I am..then when I respond back they don't answer..but every week they send text..lol..I think the younger people don't have the life experience on how to handle it and don't know what to say. Some people it just flat makes them uncomfortable. Its all ok with me..I only expect from my hub and close family. But, like I said before, I do understand because I got in big funk for a day or two that my Dads side..grandmother too...hadn't so much as sent a card. Just remember it is on them.
Connie- I do not think..but could be wrong..that there is any food that is "estrogen laden"...I know that if you have extra weight on you, that it can cause extra estrogen to be produced. I have tried every way but Sunday to get out of taking tamoxifen..do not like the risk for pulmonary embolism and clots (my grandmother got the pul emb..she took tamoxifen)..even suggested I get a hysterectomy so I can go on the one that starts with a A (?) but my Onc said that your adrenal glands produce estrogen as well. I did read up on it last night though and it says that tamoxifen carries only a 1% greater risk..sooo...guess I'll be on it. I am glad you are doing well with your chemo so far! Maybe someone else will know for sure about estrogen foods..??...
I am still having sweats and jitters..now today my heart is doing rapid beat. I guess I am going to go and do the IV fluids to see if that helps..I wonder if the steroids they have given me has somehow built up in my system..?
Good news..I just called my insurance company..I HAVE HIT MY CEILING...well, in theory..its good news..LOL..My prosthetic is going to be covered at 100% and this frees me up to go to Cancer Centers for IV fluids instead of the hospital (was going there as husband works there and they write off anything done there) as hospital is booked up today and can't fit me in. I, also, am going to get every medical thing I can think of done.
Has anyone had implants already? I was thinking of DIEP..but keep going back and forth about it. I am a D cup and heard that implants weren't good for bigger bust women and also if you only had uni MX. Any help with that...also, I heard implants were heavy and aggravation.
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JerG- No drama. The emotions are real because of the trauma we are all going through. Vent away. ((((HUGS))))
ckmoss: I hope the IV fluids help.
I am not sure on the foods though I have heard to reduce soy.
Hair stubbles that have grown in from shave fest are coming out by the handful today, so it looks like I'll be sitting here pulling my hair out all day...literally!!!
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KBEE- LOL! That was funny! It truly helps to laugh about what you can....My thing that I find funny is, I read in my breast cancer manual that if you have sex within 48 hours of having chemo, use a condom....Who would want to have sex within 48 hours of chemo???
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My boss called and asked what I was doing today and I told him I was pulling my hair out while working on the grant proposal. He was startled, and said, "what's going on with the proposal? Are there problems?" I said, "No. My hair is just falling out, so I am pulling it out while I am working." He really didn't know what to say!!!! I did laugh!
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I sometimes do "dark humor" about it with my husband...he's not amused.. lol..my best friend that just lost her leg in a traffic accident ..has the most positive happy attitude we joke all the time ..,,we were joking the other day that if we ever got strong armed robbed, she could whip off her prosthetic leg and I would whip out my prosthetic breast and beat him to death ..She said she could be The Blade Runner and Id be the Titty Bomber...fighting crime LOL
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Working in fire/EMS, I do have a rather odd sense of humor; most of us there do. In a way I suppose it is a coping mechanism with what we see, but it does transfer to other areas of my life, and ends up being a positive coping strategy. If there are any positives I will take from this, I think it'll beworking hard to find the positive things and humor in bad situations, and also making time each day for exercise.
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Kbee-That is def the right attitude! I worked for 6 years dispatching county police at 911.so I know you understand that humor that gets you through. High stress jobs..I work now at Verizon call center..my background has helped me, as someone screaming that they dropped and broke their phone and want one dropped out of the sky NOW. (and they do) doesn't bother me...lol..come to think of it..now that I have had breast cancer..I could be like..oh..but have you had your breast removed and then poison trickled in you???....Its all great to have good attitude..but the blues do come..so we stop a minute, have a good cry and then move on.
I hope all is going well for everyone.
NC -Are you in that magical place yet?
Jerri-I hope you are feeling better.
TwoHobbes-Did you make it into work?
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It is good to try to find the humor in this when we can. My French BF calls me (in French) his little egghead - something to me that before would feel like not a very nice thing to say, but he makes me laugh about being bald. Maybe going through the process of the hair coming out with him via a mohawk helped too.
I've had my crying moments, but I've also had a couple really insane, laughing moments since starting chemo. I'm talking manic! Last night was one. I couldn't stop myself from laughing uncontrollably at the slightest thing that struck me as a little funny. Has anyone else had these manic episodes as well? I'm assuming it's part of the emotional rollercoaster to have some crazy, out of control highs to go with the lows.
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Ck - I am in that magic place called finished chemo - the other magic place starts on Sunday 6th
Still in Hampshire UK at present
I agree a dark warped sense of humor is handy with what we go thru - others can be amazed with what we can get away with saying
I think I might have a mm or so of hair growth)))) -
NC-yeaa on the hair growth! I am going to miss not shaving my legs though..not enough to stay in chemo though..lol.
Mellie-Thats funny! Yes, I've had manic moments..its good to laugh and be silly! My husband can't walk by me without rubbing my head..lol
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Oh my gosh, all of your support means so much to me. It's amazing what a good cry and a good night's sleep can do for a person. I made a short list of things to do today to help me keep focused. Then I got a surprise visit from my daughter, SIL, and three grandkids. A 4-year-old and an 18-month-old can bring you out of a funk really quick! Mellie, you are so right about having something to look forward to. I am planning to get away for a few days during winter break and just trying to decide where to go. Mexico, Carribean, Florida?
I have been thinking a lot about my close group of friends. They are mostly in their 30's (I'm the age of most of their moms!). We became very close while working together and then going through a difficult time in our jobs. So I don't blame them at all. They were so great when I had surgery, making baskets of goodies, bringing meals, we even all have matching t-shirts. It seems like people understand surgery because everyone has experienced that. But unless you have been through chemo, or someone close to you has, you really don't have any idea what to do or say or how to help. It's just kind of scary for most people. When my DIL went with me last week she said she expected to see people throwing up into buckets. : ) Since I keep so much inside I'm sure I didn't help those those who didn't know what to do. Kind of like with my ex when I wanted him to know what I needed without having to tell him then I got mad at him because he couldn't figure it out. : )
KBeee, that stubble is so annoying. I think mine took about 10 days to totally fall out and I helped it along with some body scrub.
ck, I hope you got some fluids. I think they really did help me. You are having some weird reactions this time.
Love the dark humor. Here's mine for today. My son who lives in Amsterdam called to check on me today. He was telling me about some funny things he heard at a David Sedaris reading. For some reason, it is a big insult in Dutch to call someone a name and then attach a disease to it. So if you really wanted to insult someone you might call them a "cancer whore." That made me laugh so hard. I told him I think I have found my new nickname.
Thank you all so much for helping me over this hump. Love to you all. -
Jerri-LOL..you just made me surprise laugh snort!
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Hahaha! CK, KBeee, Jeri -- I think you are SO funny!! Crazy how we can all laugh today when we were crying yesterday!
Here's mine -- I'm a blonde Caucasian, and I work with a perfectly lovely African American young man. At a meeting, one of the young black women remarked on his new (very very short, almost bald) haircut, saying "Nice fade." "yeah," I said, " I am going to be getting one soon -- where do you go for haircuts?" Everyone looked at me perplexed for a moment, except the young black woman, who joined me in a big laugh! -
TeamKim-LOL! I bet they all about died laughing! By the way, LOVE your quote! -
JG-
It's called "venting" and you are allowed=go ahead and cry. I admit I have had those moments, too. None of us asked for this and none of us would wish this on anyone. Sometimes I think people don't call because they don't know what to stay. Put something as your "light at the end of the tunnel." A vacation or something. That's what I am doing to get through this shit!
And, seriously, if you are around Chicago-let me know.
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TeamKim I think you are right. People sometimes want to help but they are not sure what to do. Assign them something. Good job!
JG and anyone else in a bad mood-biggest hugs. It's actually quite common to have a big let down after treatment and maybe this is what is happening. This is my second time at cancer. At the beginning everyone is rah rah behind you. You have doctors and nurses and family holding you all the way through. You get to the end and shortly afterward they want you to be normal. Cook me breakfast work 9 hrs a day go to the store etc etc. I was the one tired all the time and in pain and with a stack of medical bills. There wasn't much fun to it. The good news is it gets better. In the mean time have a cry and then try to find some small doable things to pamper yourself and lift your spirits throughout the week. -
KB-
I get your humor-we call it gallows humor. Before I started chemo, I had gone for an 8-mile hike with some co-workers. We were spraying each other down with insect repellant and one of them thought she had sprayed me in the face. She said " I am sorry." I said, "What, are you afraid I'm gonna get cancer?" We all had a good laugh.
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Oops missed a whole page of Comments when I posted. JG glad you are feeling better now.
I also laugh uncontrollably at silly things and my son thinks I'm nuts. I do like to use my cancer as the punch line too. Black humor. But I have the other side too where I get mad more easily too. I can really cuss out the bad drivers now.
I also have some dark stubble now. Gee only six or eight months till I have a hair do. KBee it wasn't long ago I was watching the stubble fall and now it's coming back. I used to be quite entertained by pulling out the remaining hairs on my arms with ease. The opportunities we have had that others don't! -
Has everyone lost ALL there hair? I have maybe about 1% of my hair still hanging on (buzzed to about 1/4 inch). A few of them are even growing. I haven't lost my arm hair either. Legs are smooth and not growing after shaving. Maybe I should epilate my arms!
My friends have been egging me on on FB to get a henna tattoo on my head - I think seeing Cee Lo on The Voice has inspired them. I would have to shave my head to do it because of my remaining fluff. I'm sick of it though. I thought it might hang in after one cycle and the next cycle would take care of it, but nope! It's still hanging on and I feel like I look like a vulture at times.
TwoHobbies - how long after the last infusion to the time you see the new stubble growth?
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Well, finally got my the IV fluids and it has helped some with the "jitters" and sweats. I'm really tired now, but was up at 3am..with uhh..bathroom issues, I always have that "fallout" after chemo SE pass. My onc RN says that its like if a hurricane came through a town, after it left, there's still trees that fall etc. lol..but signals the end. / The funny thing is - after 2 big bags of saline, I came home and tried to take a nap..I slept for about 45 min and the ENTIRE time dreamed I was trying to find a bathroom..they were either full or out of order..THANK GOODNESS I woke before I found one! LOL..
Mellie-I've finished my 4 rounds, and never did lose all my hair..I buzzed first then when that started falling out I had my husband do a close shave (not all the way bald)..so my head has kinda felt like your legs do after maybe 2-3 days of not shaving..my hair is normally like a dirty blond..but like it is now..looks blond or almost white (WILL NOT SAY THE WORD GREY
! as I only had a few strands of grey before)..so you can't hardly see it. I think it looks horrible. Don't have the face for it..I'm like you shaved my legs and the hair never came back..same with underarms. TwoHobbes-Did you do any extra treatment the first time around..like chemo/tamoxifen/radiation? If too nosey, I apologize. I have a friend that has it now /her 2nd time...and she had lump with radiation..and got in same breast..which further tells me that radiation is not worth the 3% better chance you have at not recurring compared to side effects.
I hope everyone is having easy times today and feeling better! They are calling for huge tropical storm/depression for us Sunday and Monday..so am going to try and get some yard work done before then.
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Mellie somewhere around 23 days post I saw a white fuzz. Imagine a downy chick kind of fuzz but not extremely thick. Just this week I have a shadow of dark hair so that is between five and six weeks after my last chemo. And no leg hair yet. Wouldn't that be a good SE to keep. I don't really see lash or brow growth though. I have thin brows but not too bad but almost no lashes on bottom and holes in places on the top.
So ladies I returned to work today and it was a little hard but OK. I did lay low and went through voicemail and e mail etc. There are three kinds of people. Your true friends love you and will be the first to come by to hug you and talk. Then there's the surprises-the truly nice who we're not really friends but warm hearted people. Then there's the group that ignores you until they see you in the hall and give you the smile and the faint "welcome back". I didn't see too many of group three today so it was a pretty good day! Count your lucky stars if you have enough in group one and two to outweigh the threes! -
CK I had bilateral mastectomy first time and tamoxifen. My oncotype was low so no chemo. No rads as I had no positive nodes. So the explanation is they think the tamoxifen was not working for me. I was pissed because I took my medicine every day and did my 150 minutes of walking almost every week. I even lost a few pounds to not be near the top of my BMI and changed how I eat. It's hard to be positive after being on the wrong side of the statistics but I just have to hope this time will work.
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Twohobbes-I hate that for you (the recur) but I know this will work for you! To be honest, I don't put much stock in that onc test..there are a lot of women I have come across through the months in these boards that did not do chemo due to that test and have recur. I would be mad too if the tamoxifen didn't work..thats a crappy drug to have to take for nothing! How have you liked your reconstruction?
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I don't think my case demonstrates a problem with the oncotype. Some % just don't respond to the tamoxifen. Lucky me. I had almost no side effects on the drug and personally I think that was a sign it wasn't affecting me for the good or bad. There's actually not strong evidence the chemo will help me this time either. I'm 90% ER and PR positive so I really need the ovary suppression and AI to work, which is my next step after rads.
I like my recon. They look quite close to my old breasts except while I did nipples i never did tattoos so no areola color. I just haven't gotten around to it and don't know if I will. -
OK girls-you are kind of scaring me!!! All the research I did said that lumpectomy and radiation gave as good a prognosis as mastectomy. I did chemo and will be doing radiation to improve my chances according to my Oncotype-then will be on Tamoxifen. Please don't make me second guess my decision now.
My son's godmother (who is my mom's age)-was one of the first lumpectomy patients 30 yrs ago-and she is still alive!!! Radiation-no chemo.
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Bikergirl you are correct. The lumpectomy with radiation has been proven to be a good treatment for many years. You are not doing anything wrong or making any bad decision.
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I'm sorry Bikergirl..didn't mean to scare you..Twohobbes us right ..your info is correct..I was planning on doing lump with just radiation , but afterwards my margins came back with cells. Ended up month later having to have MX and chemo...I was told before lumpectomy..wouldn't need chemo with lump..so you have made a good decision with chemo. I've just found our tonight..2 other people said tamoxifen didn't work for them the 1st time..I had no idea...thought it was a given that worked...Twohobbes..have you thought about a hysterectomy ? I'm pretty much going to go ahead and do that next year..just to double be safe..also do not want cancer there..and if I'm on tamoxifen anyway..might as well...I hope I can keep my sanity through all this..lol
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bikergirl, my breast surgeon told me just what you said about a lumpectomy, chemo + radiation. Although I opted for a bi-lateral mastectomy, she said it was NOT life saving.
We all have to make the best decision for ourselves. Don't second guess your decision.
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