Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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I'll also just comment about Brian Joseph's. Many people on other boards have had success with it. They may have lost some but definitely not all of their lashes and brows. I didn't use it but want to let you know that you might want to keep using it for a while after chemo. I lost almost all my eyebrows 8 weeks after I finished my last chemo!
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JG - I'm a college prof. and the thought of losing my ability to command the room is disheartening. I'll deal with temporary. Permanent will turn me into another piece of baggage with tenure and I dread that. It seems like the cases of full disability are far fewer. And yes, the instructions I received are to use the gel 2xs per day beginning a week before chemo and continuing after. I'm really bad at drawing on eyebrows.
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Hello Sisters. I have indeed read some reports about long term effects of chemo and predisposing one to Alzheimer's, but years ago I suffered a TBI which already accelerates that process. I can't let myself go too far into that fear again. I know, first hand, that keeping mentally active is imperative to counter these effects. Tomorrow night I meet with my writer's group. I suppose I will know pretty quickly if my response to the work shared is impacted.
I know this sounds corny, but after the TBI in 1984, It took three years to write again & though my writing voice had changed & I was afraid at first, it turned out to be surprisingly fresh. Hopefully, we will all be pleasantly surprised by any changes that come out of this! SC, let us know how it goes with your contact person. Xoxo.
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Thanks for all of your support with my wanting to change MO. I have decided now is NOT the time and maybe I was being 'over emotional'...I guess I would like examined every time and every little thing done that can be...but after thinking about it maybe I will just ask him about it. Instead of the stress of driving an hour each way and starting all over in this process. I will see how this last infusion goes and what he recommends for follow up screening. That will be my answer.
Meanwhile I have been out the last 3 days! Just riding in car, but I did make it to church! LOTS of people! It overwhelmed me and was so weird to be around people again. I felt insecure as I wore a beret type hat and felt I stuck out like a sore thumb...then these emotions! Some sweet people came to talk to us afterward as I was getting a water, and for the life of me I didn't know who they were! She told me she was still praying for me and I didn't know who she was! Turns out it was my husbands friend in bible study and his wife, they were some of the people that prayed for me after church weeks back when I was 'overly anxious' and upset and hadn't lost my hair yet, just starting chemotherapy. I felt like an idiot and got tearful !!! These tears that just appear are annoying to me! I HATE to cry in front of people! Anyhow I also felt sortof in shock being around so many people, which was odd to me...but I guess I have been at home - and on the couch quite a lot in the last two months...
Does anyone else look for 'anyone' when out that has a hat or turban/scarf or try to find 'anyone' else that has this going on? I seem to search for another....everytime I'm out.
Also got a new wig today and LOVE it! The other one I felt like a clown...will post a new photo tomorrow...makes me feel 'normal' again....unbelievable!!! love it!
Had to stop by Dr today, as I had arm pain and finger tingling/numbness and axillae numbness yesterday and today. I saw the nurse, she thought maybe a pinched nerve or something - checked port area = I was worried about lymphedema or blood clot around port...?? She was very nice and I felt good about decision to stay there...
Going to see my counselor again this week and had some serious prayer time with God myself and am trying to change my type A personality to a b or c...and trying to be ultrapositive and no more worries!!! Doesn't that sound great? hoping...
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Hello,
My MO checks my mx site, all my nodes, and my remaining breast every visit! I find it very reassuring !
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audra, this sounds GREAT & yes, I always scan a room for another bald woman!!!!
Everything you described sounds ABSOLUTELY normal, though I am not sure it's possible to always be positive or always blue, but can only speak for myself. Speaking only for myself, faith seems to give me the strength to ride the waves of both feelings. Keep finding your strength!!!!
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wrenn, you are a wonderful story teller. The elevator moment is so moving. Xo
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Warrior, I am also a college prof, and I taught 4 classes throughout my chemo last semester. When I realized I was going to need chemo (test results came in after my semester started), I made the decision to tell my students. I thought that since I would be losing my hair, since I didn't know how many times I might have to miss class, and since I didn't know if chemo brain would make me incoherent, that letting it go without explaining would be leaving the elephant in the room. I was SO glad I told the students. Their initial reactions were so heartwarming -- two classes broke into applause -- but their long term support through the whole semester was largely what kept me going. One class organized a surprise send off for my first chemo, even contacting all the other faculty in my program, my husband, and my son (via video) to participate. They all wore pink and had an inspirational quote to read for me, and they provided individual notes by various students at each chemo infusion. Another class surprised me with gift cards for dinner and a movie on a "good day," and I got lots of notes and hugs. Many have mothers or grandmothers or aunts who are BC survivors, and those success stories really buoyed me. I feel blessed to work with these young people who are so full of life.
I didn't really have much "chemo brain," but I struggled a little bit in keeping up with grading because of fatigue. At the end of the day I would fall asleep on the sofa at about 7:00. My Dean came through with some $ for me to get a GA, and she was a godsend. I only missed 5 days of class, and I arranged colleagues to cover those and revised my syllabi to work around the treatments, so I didn't have to take FMLA. I don't have tenure, and I teach on an annual contract. I am the breadwinner (and insurance subscriber) in our family, and I have a son in college on the other side of the country. It was imperative for my family that I keep working -- It was a struggle, more so than I anticipated, but I shared my situation with my entire medical team and with my Dean and Chair. Everyone worked to make it easier for me as much as they could. I am teaching an interterm class now, and will have three courses during Spring semester, so hoping that I can handle rads with that schedule.
As a sister educator, I wanted you to know that it can be done. PM me if you have further questions.
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TeamKim, your story makes me wish I could still work & what blessings your students & colleagues!
I am also the only breadwinner with a daughter in college & both husband & daughter covered under my plan.
I ended up taking FMLA because I worked three days a week with at- risk middle schoolers and two days a week with families often with emergencies & am part of a small team with very little flexibility.
(In the past, I taught classes part-time as an adjunct & once my daughter graduated & self-insured, I had hoped to return to teaching.)
I know it must be challenging to keep working, but I sometimes (often ) feel that sitting here with nothing but cancer to think about is more dangerous to the brain & spirit than the fatigue of working.
Thank goodness I still attend my poetry writing groups, as I am able. These poets have coordinated meals for us following my next chemo. One poet wrote a "response" poem to something I wrote about cancer. It was in that group, after she read her work, that I was first able to cry. One press let me know that whenever I finish a book of poems about this experience, if I do, they would want to see them. ( now if only poetry offered a paycheck and insurance. Lol)
Maybe what sustains us/ me are those moments of humanity & connection - whether at your place of worship or in an elevator or in front of a class or as a member of a group of poets revising their work .
Your conversations are giving me a new perspective. Xo
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I look for women with wigs or other head coverings and women who are midlife or older with very perky boobs. LOL
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The funny thing is before BC I always loved wigs. Wore them just got the fun of it. Now I wear only scarves. I have wigs but just won't wear them. I do look for women with head ties and wigs. I almost straightened one woman's wig but decided against it. I figured she would see it at some point. Life!!! This last chemo really has me totally wiped out.
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(((Wrenn)))...the story about your interaction with the young man in the elevator brought tears to my eyes. Sparing everyone here the gory details, I have been shocked (I really have) at the reaction (or lack thereof, I should say) from my family and my husband's family since the onset of my breast cancer. We've received just about ZERO support from family and friends. Not sure what it's about...discomfort, I guess. But I get tired of making excuses for people.
Cancer does change things by bringing out "more of who people are...the good, the bad, the ugly," so says my Oncology Social Worker at the hospital where I receive treatment.
I'm learning to rely MORE on the kindness of strangers (acquaintances who have reached out, my treatment team, people on this website) than friends and family. I truly have ZERO expectations of others at this point in time, and the abandonment I feel has been one of the hardest parts of this journey, so far. Like so many of us out here, I've ALWAYS been the caretaker and I've ALWAYS been there 10,000% for others...reliable, steadfast, caring, empathic, generous.
Oh well...hey, I've missed you 'cause I've not "seen" you on the November T&C board! Happy you are still here posting, as I've only read and not posted on this thread yet.
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I find the kindness of strangers overwhelming sometimes. Close friends have checked in with me and visited and some just disappeared.
I can go into all the reasons for their disappearances but quite frankly it does not matter.
This diagnosis has helped me separate the wheat from the chaff which is always a good thing!
The other thing I learned is people need to be given a task to do. I have asked people to pick up oranges, pick up hair dye. Etc.
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I feel for those who have had "friends" disappear since their diagnosis. I may be the odd one here because I told only a select few. When asked to tell them what I needed or wanted, I told them that I may not need them at that very moment but if I do, I will let them know how they can help me. They would text me or call me periodically and one of them took me out to breakfast/lunch several times. I was more comforted with knowing that they were there for me than anything else. I know they were expecting me to need them to take me places, get things for me, keep me company , bring me food but the truth is... I was fine. I knew that they had not gone through this situation before and I had no expectations of what they would do or how they would react. I also recognized that each of my friends had families of their own that needed their attention more than I did. So I never have felt abandoned or alone since I knew they cared for me and willing to help me anytime.
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Melrose: Interesting - I've done the same. I also only told a select few people and let them know I'd call if I needed help. I also warned them that they could leave a message but I would have my phones turned off if I was sleeping no matter what time of day, so email was better. I did send email updates after chemo since a couple of family members across the country seemed interested. But like you - I've only had to call for a ride twice when I had to take Xanax for PET/CT. Otherwise I've driven myself to every chemo & appointment & test and plan to do the same w/radiation.
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Thank you everyone with your kind responses and words. Melrose...you never cease to amaze me and you clearly are a role model for me. I'm afraid, though that you are much more-well adjusted and stronger than me-smile.
My husband, John has been bearing the brunt of the fall-out. The following 48-hours to 10-14 days for me post-chemo and Neulasta are the hardest...but I feel I'm pretty stoic. Mentally, I do not feel like am coping well.
We literally "have" no one here in Michigan but a call or an email from family back East would be nice...ditto for a few "close" friends, so I thought. My sister has been the biggest heartache...but why am I surprised??? That is the question. More of the same.
The social worker at the Center talks about "putting people into piles" and "clearing out people clutter." That is, recognizing who and what matter most (Pile #1), which relationships are "of middle importance (Pile #2)," and which relationships should simply be left alone...no longer worth any emotional or physical energy (Pile #3).
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I've always lived by the assumption that everything a person says and does is about his/herself and has nothing to do with me. When people don't call, when they say stupid things, when they hide...it is not about us. BC is terrifying and many people cannot face it. I was surprised when a close friend did not call so I picked up the phone and called her. She was so glad to hear from me and said that she was afraid to call as she worried she would interrupt something. Next week when I start chemo she will be my support person. She is so happy that I picked her. She is honored that I trust her. My friend did not call me. I called her. I'm glad I did.
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Tonilee.... such sweet words.... you are way too kind to me. Please be easy on yourself and your thoughts about who you are and feeling a little insecure about people and things. Having a serious illness throws one's life and world out of kilter but yet it is how one reacts and deals with that event that really matters. This journey is not travelled solely by you; there are many who travel with you who find this journey new and are just as unsure of the path as you are. You may need to open that line of communication with friends and family whether they live close by or far away. It is that reaching out that will make you feel that you are trying to get that communication started. I emailed periodic updates and photos of myself to my family that don't live here so they would at least know that I was doing well. By doing this, I was able to control what they knew and how much they knew. When I was first diagnosed, I didn't want to bombarded with numerous phone calls asking me the same questions about my medical status. I was doing my best just to accept my situation and the challenge set before me. I know that they love me and care for me and want to do anything to help me but that is all I really needed. So please no self judgments..... no self criticisms..... just love yourself and those around you everyday.....
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audra67 It is tough trying to
decide to change MO. The group on this
board is great for advice. I will be making the change after the last chemo
session. I can’t spend 10 years on hormonal therapy if someone doesn’t listen
to his or her patients. Also, type of
your questions and ask to record the conversations. I’m glad thing will work
out for you in the long run.As for chemo brain
the first treatment or so I would be talking and then just stop. I seem to have
gotten better with each treatment or I just keep my mouth shut while talking.At the last chemo I
meet someone and we were talking about the friends who disappear. She told me to think of it as friends I
haven’t lost, but friends who are just lost with life. I cannot control their actions, but
mine. I find that strangers are so kind
in times of these.I hope most of you are doing well and the leg pains go away.
My third chemo I got
the flu, the last four days I have had fever 100+ and they can’t get my blood
at the local hospital because I either have seizure or pass out. My oncologist
told them I would be okay until Thursday. So Thursday I get my blood drawn to
see if I get to be at home in bed or the hospital. In the meantime I have had to cancel teaching
classes until after the last chemo.
Hubby is upset with me, because I’m scaring him at night with the
breathing issues. Be thankful you guys
live near a big city. I have learned my
lesson that even if you want to have a “normal” life and still work and life
during treatments, you never know what comes with each chemo. I’m pretty upset I spend all my time now in
bed rest, but I guess this is temporary.Another note: after
your last chemo how many weeks is it before 1) a reexision 2) you start
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FDM- Usually 3-4 week period before starting rads after one finishes chemo. One usually will have a post chemo visit with her MO and also may see the RO to discuss the rads treatment plan. As for the rads, one has a simulation session before starting the actual rads treatment so that one is marked/tattoed and it is determined how to line the rads patient up in the right position so the rads are aimed at the right location. I don't know about the waiting period for a re excision. I would think it is probably the same---- 3 to 4 weeks post final chemo to allow the body a chance to recover from the final chemo.
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So sorry that some of you have not had much support... but at the same time it is a comfort to me that I'm not the only one who experienced this. When I was first diagnosed, my main thought was, "Well, at least I have the kind of friends who will go through this with me & really support me." They were super close, sensitive, responsive friends & I felt certain they would stay by my side. They didn't. It hurt so much & still hurts now, several months after I've finished treatment. They were like family to me and it's hard to accept that they were not there for me. And blood family, too, has also ignored everything I went through, never even sent a card or called my husband or asked how I was feeling. It all adds to the surreal feeling, that this was all a dream, even the people closest to me don't acknowledge it. I am still friends with a few of them but at more of a distance now. None of them are my enemies but I don't put any effort into those friendships anymore really.
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Is anyone having problems with extremely delicate skin as a side effect? I went to work on Monday (day 8) and after a short day of walking around managed to develop enough hot spots on my feet that now I can't wear shoes. Other places seem to have the skin test it rash easily and my hands are very sensitive. I never thought walking in shoes would create this much damage to the skin.
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Quirkygirl -- you may have hand foot syndrome ( Link: http://www.breastcancer.org/treatment/side_effects/hand_foot_synd and http://chemocare.com/chemotherapy/side-effects/handfoot-syndrome.aspx) I realize that that the info says that our chemo regimen isn't one that typically gives hand foot syndrome; however there are some helpful tips as to what you can do. You may want to call your onco's office and have a chat about this. You just want to minimize any possibility of getting an infection from those hot spots...... Keep us posted.
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thanks MelroseMelrose!!!
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Well, so much for minimal SE's! I had chemo #3 on 12/30, and this week developed a very severe allergic reaction. MO said it was the worst she has seen. Rash, hives, extreme itching, swelling, throat starting to close
. Can't have taxotere again b/c onc said it would most likely put me into anaphylactic shock...and as she said yesterday "I am trying cure you not kill you!" I was sobbing in her office yesterday from the pain and telling her how scared I was and she was apologizing to me saying "I did this to you..." So sweet. Anyhow, I will have abraxane instead of taxotere for the 4th chemo. Scary bc we don't know the effectiveness of not having 4 treatments......sigh.....but I have no choice as the reaction was so severe. Had a shot of steroids in my muscle yesterday and am on heavy dose if oral steroids. Swelling is slowly going down.....but still super itchy......Really brings to life a something my aunt who battled colon cancer said, "if the cancer doesn't kill me the cure surely will!"
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Hi Sisters. Having BC has definitely highlighted a sense of aloneness for me, at times. Usually, just during chemo, I have this deep sense of vulnerability and being really alone, even with my husband by me. He does bear the brunt of my physical and emotional side effects. I absolutely agree and do live by the sense that how others respond to me has little to do with me and more about their own emotions and needs & what I call the "invisible suitcase" of family history each of us lug with us. (I sure do) People will say that I should call them anytime or "Do I need anything?" and I have finally figured out that my answer better be concrete, such as picking something up at the market or I have no clue what to say. Still, I guess I start to feel frustrated because my only brother lives 6 hours away and I know that even my nearby beloved cousin has her hands filled with working, school, and raising kids. I guess I have been surprised by "good" friends who seem to have withdrawn a lot. I will still love them, as friends, but am aware that each friend has a place in my life and gives me different things, but are limited. BC has definitely opened my eyes to human limitations. I guess I feel sad to learn what I have learned about friends and BC, but also I know this realization will help me as I age. On the other hand, I have had major wonderful surprises. Strangers - a friend of a friend who had cancer - will telephone to support me. Or someone shows up with a chicken stew, someone I see at monthly meetings but not consistently. Or a secretary at my office will send me a note with her cell phone, and knowing her, means it. This makes me hopeful. It shows me that wherever I am, wherever I eventually move for instance, I can probably find a community. This is the MOST complicated emotional experience I have ever had. I feel simultaneously lonely and hopeful. I am telling you about my experience because I am not sure I can ever really give "advice" or know how it is to be in anyone's else's shoes. Maybe, something I am living will resonate with you dear hearts. Love (and surprising myself here I mean that) momat927
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virginia, I hope you are doing better soon! Had you had any allergic reaction before this? Did you have steroids before TX? So glad your MO is on top of it!
QG, I hope you get your SE's resolved soon also!
wow, this BC and SE's are so unpredictable.
((HUGS))
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I guess I have so few friends that the ones I have are the cream of the crop! I do experience loneliness now and then, but part of that is my own doing, I know. My friends have been supportive so far. I think each of our friends has a special place and helps us in different ways. Sometimes people just don't know what to do, so for fear of doing the wrong thing, they do nothing.
I agree momat, this is truly an emotional and mental roller coaster.
Has anyone joined a support group? What has your experience been? I was thinking of it when I am almost done with TX.
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VirginiaNJ- Yikes..... Hope those allergic reactions to the Taxotere go down asap!!!! That's right.... no more Taxotere for you!!!!! Hang in there!!!!
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keepthefaith- Believe it or not, you are giving advice and comfort to those here. We know of the mixed emotions and feelings we may have at times. There is no instruction manual that was given to us to get through tough times and so we just do our best. You are doing great.... and remember you are not alone here!!! HUGS!!!!
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