Cytoxan Taxotere Chemo Ladies- February/March 2013
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i just contacted the cancer association for local support groups. Often being alone is also my own doing. I do have a bit of a hermit gene, but BC is changing me somewhat. I am deciding between individual therapy specific to BC or a group. I too would love to hear others' experiences
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momat927...your last post so closely resonated with me, as I can relate to so much of what you are feeling, I really can. It's hard to know where to "properly" post such deep feeling and emotions, as I see out here on bco, people's tolerances, ways of coping with bc and replies vary so greatly. And I certainly do not want to hurt, isolate or offend anyone out here. It's the last thing any of us need right now.
But I want to tell you "I really understand" and you are not alone.
One of my "fears" has been burdening others with my woes, as I've always been the caretaker and giver of those around me. I have been extremely independent my entire life and I am 56 yrs old...some of your words tell me I may be a bit older than you but I want you to know you are not alone and I very much relate to what you are saying.
Without becoming too publically personal, I have been shocked and disappointed by the way in which many people with whom I thought I was close have backed away from me since my breast cancer diagnosis, especially my one and only sibling, my sister. I understand that people bring their own emotional baggage, including their strengths with them to most situations. And I want to believe most people mean well and are good at the core of their souls.
So, I guess I'm surprised at how people have responded by backing off after the initial outpouring of emotion ('cause people thought I was [probably] gonna die in a few months...I hope not)! So, I was (and am) surprised...but not quite shocked. I should have seen it coming. Perhaps breast cancer has helped open my eyes to the complexity and oftentimes very one-sided nature of family relations and/or close friendships. Alternately, despite being guarded my entire life, I am choosing to accept the kindness of strangers in lieu of my expectation of others.
The Oncologist Social Worker with whom I see at the Cancer Center at my hospital says, "breast cancer doesn't 'change people, per se, barring the person with cancer...but even then...like any other stressful or traumatic moment in time, it simply brings out more of who each person is...the good, the bad, the ugly...Magical Changes and Pink Ribbons are something society has placed on the face of cancer to make it more palatable for everyone to accept." Very wise words, I think...this woman is in her late 50s and has been an Oncology Social Worker her entire life. Like me, she has even worked in Hospice (but I am not a social worker...I am a Nurse Practitioner-smile).
Unlike you, I have not worked regularly since leaving New York City for Michigan in 2006. My life here has been quite isolated and lonely 'cause I primarily teach nursing at a local college (Adjunct Faculty) whenever they need me...it goes in spurts. Right now, I do not feel capable of working. But look at the gesture of kindness (as I know you do) from your secretary. A little note like that, an EMAIL from someone...those things would mean the world to me.
Not looking for much...just little gestures that we are in the prayers and minds of others. Oh well...go figure.
Frankly, I learned a while back that trying to understand what motivates others is a colossal waste of time.
And the kindness of my Cancer Treatment team, the kennel where we boarded our crazy feral cat and maniacal puppy when we traveled, our veterinarians, our pet sitter...these folks have been kinder towards me than people I've known my entire life...like my family.
One lesson my very brief bc journey has taught me is to NEVER JUDGE the way in which anyone goes through this journey. Whatever works for someone is what they must do, INCLUDING ME & YOU!
If Pink Ribbons and kicking cancer's a$$ and Susan Komen Races For The Cure are where someone is at, I admire them for that...but it isn't me and it simply isn't where I am at...doubt I will ever be.
If you'd like, PLEASE FEEL FREE TO add me as a friend and PM me anytime!
You are not alone...I can truly empathize with you!
Hugs,
Toni Lee Fiore
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momat927...As an aside, I too contacted the American Cancer Society (I think) and requested a Breast Cancer Coach, which initially was very helpful. The Society attempts to line you up with a woman, who will call a few times to "coach you" through the upcoming battles. My coach is a very lovely lady but since she became so busy with her two teenagers returning home for the holidays, we've lost touch a bit. It's my fault and I've got to reach out. She's more of a "texter," whereas I am not...do not even have a texting plan on my iPhone-lolol.
Like the info you received, I'm reserving the "group" until I'm feeling better and able to make a weekly, "every Tuesday night" commitment to the group, which is required. Right now, given the way I struggle with T&C plus Neulasta, I cannot make a weekly Tuesday commitment. Just so you know, this group in Ann Arbor Michigan is professionally facilitated (actually, my social worker, Debbie from the hospital runs it with one or two others). And, the weekly commitment is required because the mentors believe "cancer people face enough loss and rejection...they don't want people coming in and out of the group at whim."
I agree with this, thus I'm waiting 'til I see how I do with Radiation Therapy come late Spring 2014.
I have found both the Individual and occasional Marital Sessions with Debbie to be a God-Send. She's the only therapist I've ever met (barring my professional time spent at Hospice) who is SPECIFICALLY trained to work with oncology folks and their unique issues.
I like her a lot. Best wishes.
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Virginia, Oh my! Glad you are okay and your MO recognized it! TeamKim had the same reaction!
QGirl, if it is not one thing it is another isn't it? I hope they figure that out for you!
((Momat))) hugs, cancer can be lonely sometimes. My friends seem to know institutionally when to call and text me, so I have been fine. I have needed a drive a few times, and just sent an email out to friends and got help. I also had meals delivered by the community I worked in for 12 weeks.
I am also in therapy so that has been great for me. I took off work as this whole chemo reconstruction thing has been exhausting and I have both cancer and disability insurance so that has been good.
Today is the first day after chemo I can walk around a little, I am so fatigued! This board and the ladies here have bee a lifesaver for me!!!
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Toni, thank you so much for your openness & kind words. I am, in fact, 65, but have a college age child & pretend I am young. LOL. I also do remember that being an adjunct felt isolating, even at best. I taught nursing students taking bio-psychology classes, by the way- favorite students.
I am grateful for your response because I was just beating myself up for saying stupid things here- Hence hermit gene.
. I know, intellectually, nothing any of us say here is. "Stupid" but as said here many times by many of us , BC seems to have me questioning emotionally.
So, where is the line between how we feel emotionally and our physical side effects? Not easy to know
I guess I feel there is a limit, for me, about what can and should be discussed here and that is the reason for seeking outside supports, like groups or social workers or therapy . None of us are here as professionals. We are just giving and getting support . On the other hand, i am deeply grateful that so many people are frank about fears, confusion, and vulnerability inherent to this cancer process.
Here is to an easy ride. Amy
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Virginia...meant to post earlier that I am sorry to hear about your horrible side effects this round! I mentioned on another thread that after speaking with an On-Call MO from my group a weekend or so back (about SE's I was experiencing 10-days post T&C), she told me something I will not soon forget...something I'd like to share with you.
She said, "In the face of Adriamycin...the 'red devil," which is a very tough chemo drug, people tend to underestimate Taxotere & Cytoxan...especially Taxotere...many MOs make patients think it's gonna be a walk in the park...and it may be for those versus Adriamycin...but it is a tough, brutal, POTENT chemotherapy...understand so and be gentle on yourself."
I've followed your SEs with T&C...I hope you do better with abraxane...you've had three T&C treatments. I know I do not trust many and it has taken me a while to believe that my Treatment Team (especially my MO) knows what he is doing-lolol. They seem to get the intellectual part of it all, if not the emotional-smile.
I think you'll be okay switching to abraxane at this point. The other stuff seems too toxic for you.
Keep us posted.
Hugs,
Toni Lee
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SC, thanks so much for your note. Disability? I was wondering about that but felt oddly uncomfortable about it. I am so relieved to hear someone else investigated it and is receiving it. My MO said something a bit disparaging about that option. He is ok, but not always great relationally. Ok!!!! Enough of my ambivalence about moving from helper to patient!!!! off to call therapists. Xoxo
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Virginia, forgive me !!!! Reading posts kind of backwards on iPhone & just read your post!!!! Thank goodness your MO is on top of this with you !!!!! I am so so sorry you went through this. Chemo is like a haunted house. You don't know what will jump out at you next. Let someone nurture you today!!!! Amy ( momat)
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I have a private short term disability policy, not federal or state disability. That is totally different. Happy Therapist calling!
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keep, melrose, sc, and Toni....thanks for your kind words.... It's a bit scary not to be getting 4 of the same treatment, but what can I do
keep- I was on steroids oral the day before and after chemo. I got a drip steroid and Benadryl the day of chemo. After chemo #2 I got redness at the infusion site, but it never spread...was just a big blotch on the back of my hand. Chemo #3 was infused in my arm and no issues. But the next day when I woke up I had a rash on my wrists. MO looked and told me to just use hydrocortisone cream and it went away until this week when everything literally blew up....
Toni- I did the "red devil" in 2007 with very few SE's. I worked throughout my chemo then. My onc told me that TC was "easier" than AC....LOL not so much.
Still super super itchy everywhere, but my throat doesn't feel closed anymore and the swelling has gone down dramatically.....
Again, thanks for your kind words!!!!
xo
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Virginia!! That is AWFUL and weird for it to show up so many days later when you thought you would be in the clear! Glad they switched to another drug! Wishing you no welts and that rash to go away! I HATE a rash! Praying for you to recover quick!
I am seeing a different counselor this week, hoping he's great...was a referral from my massage therapist/ and she is a friend, she has been someone that texts me every few days to see how I am through this and means so much!
The other counselor I liked, but her solution to all things is , give it to God...well I do, and I am but still need other tools....so hoping this guy has more up his sleeve that works for me.
Happy night !
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SC. Yes that makes sense- private short term disability. Hmmmm. Thought I had that via job. Off to investigate. Prefer that than any state or fed. Thanks momat
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Virginia, to have your MO so responsive & apologetic is rare. Sometimes I feel as though I am missing things in posts or reading too quickly. How are you tonight?
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Audra and Moma - TY
I am hanging in there
the worst is over - throat is good and swelling is 99% gone. My MO is AMAZING. I really love her. She called me again today to check on me and was apologizing again for "doing this to me."I just keep telling myself that most of my cancer was removed by the biopsy to keep me from freaking out about not having a 4th round of TC.
And with regards to support - it's truly fascinating how people react for sure. I am lucky that my brother and sister have been truly amazing to me. My sister was by my side the whole time the first time as was my dad. My dad has since passed and my brother kind of stepped into the dad role (he's 11 years older than me). My first round my bro never even called to see how I was. I try to forget that b/c he's been truly amazing this time ferrying me into crazy Manhattan for numerous doctors appts. And my sis, well, she is my ROCK.
I have just a few friends who check in consistently. One coworker who hugged me and cried when I visited the office mast year sobbing to me "I can't believe "we" are going through this again" - not ONE call/text/message - nothing. Many I heard from once maybe right around my surgery, but never again... I think what others have stated pple just don't know what to do / say. It basically helps you prioritize relationships for sure
Hugs and love to all......
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I actually have AFLAC hospital, accident and disability policies and I have an AIG cancer policy. Suffice to say they have more than paid me my premiums over the years.
Ladies check to see off you have any policies you have forgotten.
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SC- just for a preview of being DONE....how are you feeling after round 4/??
Are you doing better?? Do you think mentally you are happy and thrilled and that makes 4th one easier/better?
Just wondering/..
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Audra, today was the first day I could really move around. The idea that this chemo is over and I made it through is quite overwhelming and peaceful at the same time.
I feel a sense of moving forward that I did not before. I think once my PET scan is done on Friday I will feel more in control of the new normal.
The fourth one in retrospect was hard Because of the exhaustion the first few days were unbelievable, but WOW. It's over
I have started to get hot flashes, where I want to run out in the cold naked.
Other than my back. I'm a happy camper... 0 -
That is wonderful SC!!! SOOO Very happy for you! I cannot wait, my last is 16!!
Did you have PET scan before chemo too or ct scans?? I am wondering as it seems some get ct some pet....I got several CT scans of different parts of my body and MRI of chest so I had to go all day from one end of hospital to another...I am thinking it would be much easier to get the PET and be done....I wonder how / why they request one over another...I'm going to ask my MO...
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sc, virginia, glad you are feeling better! Keep it up!
sc, hope your scan goes well on Friday.
audra, love your pic! You are one TX ahead of me. I will have my 3rd on the 16th. I am at the halfway mark now for my chemo and it feels good:).
I am still catching myself being surprised that I am on this forum chatting about BC, sometimes...but thankful you all are here!
((HUGS))
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Apparently, my MO does not believe in scans for follow up. The reason I am having it is because of my back and I asked for a full body scan. He will only do a scan if you have symptoms. One of the nurses in infusion accidentally did the tumor marker test and it was high. My MO said it was unreliable and would trigger 'unnecessary scans". I will forever be grateful to her.
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Virginia glad to hear you are doing better!!!!
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Melrose: Thanks for the links about Hand&Foot syndrome. I'd heard of it but ever thought to go back & research. Since I'm on Adriamycin with my Cytoxan that would explain why all my fingers are cracking open. And may mean that what I'm ascribing to CIPN from the Taxotere is partly Hand&Foot. (how can you say Hooray for an SE for heavens sake)
BTW - I didn't have near the SEs with Adriamycin that I did with Taxotere. That Tax ate my lunch - literally - w/more than 2 weeks of the Big D every cycle & all food tasting like garbage. Good luck to all of you with your current treatments.
Just have to share what I said to the guy I thought was my best friend. A year after the BMX & exchange when I had heard NOT ONE WORD, I called him up one day after I'd tried to get over the hurt and when he answered I said "hey, it's not catching you know". Of course he had a million excuses. Only heard from him once afterwards when he needed help. So I've written him off after a 20 year friendship - but it felt good to brace him. Maybe I'm too cynical?
Audra: Love your new avatar.
SC: Holding you in my thoughts through the scan.
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SC, i am so grateful you are getting a scan & for that fortuitous mistake!!!! I hate to think some MO choices may be insurance driven. A cynical thought. Please let us know how it goes. Yay for self-advocating!! Amy (momat)
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SC- That's right, its for your back pain...good thing you are getting checked all over though, I want a PET scan! Praying all is well and those markers, I looked that up online the other day and read a ton about how they are always off and not accurate...so don't worry.
God has you in the palm of His hand!
minoustwo- hoping feet get better soon!
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Minus good for you! Calling him out. Some people just need to be shamed.
Thanks Amy and Moma' my MO did warn me that it will "light up" because I have some inflammation. I wonder how they can tell the difference between bone mets and arthritis.
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hugs SC - will be thinking of you tomorrow.
Audra I like ur new pro pic - is that your wig? It's very pretty!!!
Minus- I am with you! Obv taxotere was very bad to me lol. I didn't have as many SE's with AC chemo. My onc told me from the start TC was "easier" than TC. UGH
I still very itchy - my palms mostly today. Do you all think this is the hand and foot thing? I hope the abraxane is better to me lol. My swelling is 100% gone thankfully. Yay for steroids!
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(((Virginia)))...I am glad you are feeling a bit better today! Taxotere is some very hefty & toxic stuff. I think your itchy palms are still related to the nasty SEs from Taxotere! Don't back down yet on any of the treatments ordered to combat the SEs...it takes time for everything to settle down.
I am on Day #2 (Post-Chemo #3 T&C) & Neulasta...feeling a bit crappy with zero appetite...some nausea and fatigue, fatigue, fatigue! A bout of diarrhea...the usual. Husband was called into work to cover evening shift and Thursdays are usually when I plummet following T&C infusion on Tuesdays & Neulasta on Wednesdays. Oh well...I will somehow get by!
SchoolCounselor...have always followed your posts and I've been amazed by your strength. You are one incredible lady!
Audra...meant to tell you in my PM that I LOVE LOVE LOVE you in your new wig! You are gorgeous any way you look at it...and I sincerely mean that...but I LOVE the style of the wig...it looks great on you...so pretty!
minustwo & keepthefaith...hugs and positive thoughts to you today!
(((momat)))...hang in there and know I am here for you!!!
Uggghhh...gonna try to do a bit more crocheting, which is hard for me immediately post-chemo...concentration is poor with bad neurological SEs. I'll try!!!! Working on completing a scarf for a friend. It's a delayed Christmas present!
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VirginiaNJ -- Your reaction to your 3rd TC tx sounds exactly like mine (if you do a search on my name you can read all my posts on it). Interesting that our dxs are so similar too.... My MO was considering Abraxane or Gemzar with my 4th treatment and wanted to break up the two drugs to just make sure it was not a reaction to Cytoxan and to make the treatment a little milder. But I was scared, like you, and also did some talking to my PCP about i t ( he encouraged me to stop and "not to tempt fate"). Ultimately I decided to just stop after the Cytoxan and not get the other half of the 4th tx. I just was not comfortable getting a new drug with unknown SEs, and I felt the risk outweighed the little bit of benefit it might give me, My MO was fine with that decision. Good luck to you, hoping you make it through tx 4 without any trouble! ((((Hugs))))
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tonilee - yes I am still popping my steroids
got the impression onc wanted me to lay off the Benadryl yesterday - wonder if it counteracts chemo? And bless your heart for crocheting someone a scarf Teamkim- I just retread ur posts. The rash sounds exactly the same. My butt (lol) was the first place to start itching....and then it just basically spread everywhere....then the hives.....then the swelling and throat tightening...that was super scary. My MO is confident it's the taxotere so she is planning abraxane. she said it's like taxotere without the allergans? Anyhow, I am scared of not having 4 of the same chemos, but like you there is no way I can have the taxotere again. This cancer is triple negative so chemo is my only defense against it. I am even more glad now that I had the double mast to remove most of the breast tissue. I was a complete and total sobbing crying mess in my oncs office and she was just so kind and reassuring. Not that it eases my mind any....but I do love her and her compassion....
Thank you ALL for your kind words of compassion....they mean the world to me!!!
Hugs!!!
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VirginiaNJ- you went through my worst fear!! Sorry you had such a bad reaction. My nurse said if you don't have any reaction after #2 your good to go. Ugh! So much for that!! On day 2 from 1st treatment and so far feeling good. Feel like I might start floating from the 50 ounces of water I've guzzled but I'm one of those believers it helps flush out the crap and you won't have as many SE's. Yea probably not, but let me believe. Lol! Keep you posted if I've drowned the SE's. Hugs.
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