Starting Chemo October 2009
Comments
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Hi everyone,
Suz, sweetie, I'm so sorry that you have to shoulder all of this when you should be putting yourself first. Be kind with what you can accomplish. My love to you and your mum. Valerie, wow, port and chemo on the same day! Good luck tomorrow. Please let us know how it goes.
Jaclyn, I'm so glad things have abated a bit. I don't blame you about not picking up your wig. I can't even shop for one. It just makes it too final. When I tell people I plan to shave my head after my first tx (so cancer can't take that from me too), I keep getting asked if I'm sure I'm going to lose my hair and why I don't wait until it starts falling out, etc. I guess I'm too much of a coward to wait for it to start coming out in clumps.
Be well ladies and good thoughts for everyone at every stage of this fight!
Sido
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My mom was diagnosed in June and had a double mastectomy in July. She got an infection after surgery and was given an antibiotic that caused her to get chemical hepatitis. The hepatitis prevented her from starting chemo until now.
She was so scared but was trying to be so brave so I wouldn't worry but I know her so well I could tell anyway. She was doing good until we had to meet with a nurse prior to her receiving the chemo this morning. The nurse went through any and every possible side effect she may have and described them in detail. It almost seemed like she was trying to talk her out of having it. When she was done, my mom broke down and cried for 15 minutes straight. She just couldn't hold it in. I comforted her as best I could but feel so helpless as I really have no idea how she must feel. It just makes me so sad. I am happy to say she did decide to go ahead and try the treatment to see if she can tolerate it.
Around 11:30 this morning she started her first treatment of Taxotere, carboplatin and Herceptin. She will have those treatments every three weeks for a total of 6 treatments. The herceptin will be weekly for 12 weeks and then every three weeks for a total of one year.
She did so good today and I was so proud of her. I am nervous about the next few weeks and hope she can tolerate whatever is coming so she is willing and able to continue with the treatment.
I wish each of you brave women the best of luck in your fight.
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Hi everyone, and thanks for starting this thread, Mary!
I was originally diagnosed Stage III, ER+/PR+, HER2/NEU-, 4/14 lymph nodes. Original treatment was bilateral mastectomy, dose-dense 4 AC, 4 Taxol, and radiation.
Recurrence diagnosed August 27 2009, isolated to a few cervical lymph nodes. Pathology is ER+/PR-, HER2/NEU-. Post-surgery scans (PET/CT, CT with contrast, bone scan) all negative.
I start 6 TC (the T is for Taxotere) today, October 8.
Good luck to everyone!
E
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Mary,thank you so much for organizing this for us!
I'm participating in the B40 trial and will start neo-adjuvant chemo sometime
next week.. .
Taxel+ Avastin 4 cycles; AC + Avastin 2 cycles; AC 2 cycles;sugery; radiation 33 rounds.
I'll celebrate my 100th birthday when it's all done.
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Valerie - thinking of you today as you start your first treatment. And port placement! Good luck with everything!
Michele - how did everything go yesterday? How are you feeling?
Welcome to all of our new members!
Peace...
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Hi October girls!
Having started September 21, I wanted to share a little bit about my hair because I know that is what is on your mind........and I sure was interested in the comments of those that came before me.
In my situation, I'm in my third week after the first treatment, and I still have my hair. I did prepare myself early, because I didn't want my hair falling out in clumps and not be ready to deal with it. I found some scarves, I bought a wig, and I ordered some nice soft caps from ACS for around the house.
What I want to share is I think the right time is different for each person, and based on my situation and the stuff I've read from those ahead of us, you will know when it is time. I wear my hair short, so didn't have to worry about the interim cut. I do think at some point I will probably just have it all trimmed off. Why? Because starting this week (Week 3) my hair is hard to deal with. It is uncomfortable to dry it or brush it, and it is shedding quite a bit. I think when it starts coming out in clumps or as this shedding gets to the point of ridiculousness I will decide just to be done with it....but that's me. YOU will know when you are ready for the hair to go. Just be ready with something to cover your head, try it on a bit and get used to your look.........I was wishing it would make me look like Kathryn Heigl since Gray's Anatomy is doing a cancer story with her right now, but no such luck!
.........Good luck to all!
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Hi Everyone,
I'm now day 10 after my TAC infusion, and GI se's continue , even as I grow stronger. Yesterday was the first day that I've felt any enthusiasm for life...I can tell by the fact that I wanted to cook something, which is what I do when I'm comforting myself!
Suz, I am so sorry for your loss of your father! Wow that's so hard, and on top of everything else! I'm reading much wisdom from the other ladies here and hope that you can feel open to shifting responsibiities to others as possible. Please practice extra self-care and know that we've "got your back" in sending healing energy and prayers for you and your family.
Txstardust, Yes, I'm also on the TAC x 6 (ea 3 weeks), and my onc offered me choices for that, or ACx4 + taxol (ea 2 weeks), or opps. for 2 research studies involving adriamycin. I chose the TAC x 6 due to the every 3 week schedule, thinking I may be able to work part time (as a chaplain) around that schedule. My sister had completed the 2 week regimen several years ago, which uses taxol, and has had significant prob. with neuropathy, so I decided against that protocol, having read that the TAC with taxotere may have less neuro effects. What was the unknown for me going into chemo is my personal medical history of being allergic to several major groupings of chemicals (environmental allergies), and how that might complicate the chemo se's. (see my response to jhenry299 below). My reality check with the TAC is that I can't even comprehend working part time until week 3 of the 3 week cycle...things are still too fatiguing and se's still uncertain now. I have heard that the TAC protocol is physically more "demanding".
jhenry299, I am with you in questioning my personal wisdom in continuing chemo after an extremely difficult time with steroid response and se's after the first round. Thank you for voicing your concern, so that I can honestly express mine also. I don't want to scare others...! It sounds like I'm having a much more complicated recovery than many others who post here. Bless all of you who are still working and enjoying life with your families!!! I celebrate with you!!!
I'm looking at the % re-occurance data that my onc. presented to me and seeing the % improvements from chemo and or/anti-hormonal therapy (I'm ER+ and PR+), the hormonal therapy appears to be 4x more effective than chemo per the stats. Hmmm...
As I'm getting ready to discuss this with my onc. I appreciate any wisdom that this group can can offer.
By the way, I did take claritin on the day of and for 4 days after the neulasta shot, and had no bone pain at all. :-)
I'll be going on a retreat this weekend, and will take all of you with me in prayer! :-)
Hugs to all you marvelous October sisters!
Shoshanna
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Hi Ladies!
Day 4 after treatment, and I think I'm doing ok. I went wig shopping yesterday and bought TWO! Then I just kind of hit a wall. Not really sick or nauseous, no bone pain. Just felt like something was coming on. Crawled into bed and watched tv all night (and dozed a little).
This morning seems ok so far. I am drinking my coffee as long as I can! I am not planning to go out because I believe my WBCs are probably down now. Who knows?
What I think has helped: Ginger supplements and ginger tea (everytime I feel a little nausea, I pop one and it goes away); Ricola Lemon Mint Lozenges and Biotene Mouthwash (takes away the slimy taste); and Claritin (no bone pain)! When my head feels heavy I take Extra Strength Tylenol (even though I like Advil better, my dr said NO). Haven't taken any compazine or phenergan yet (although having said that will probably jinx me).
I am a little stiff and will try stretching. The nurse told me it could take 4 -6 days to kick in, so I will keep you posted.
Kids are being great and DH is still in Peru. Emily likes my wig that I took home. I ordered a human hair wig as well so my stylist can cut and shape it. Looking forward to that (Hmmmm . .. maybe "looking forward" isn't the right phrase but you get my gist!) The wig lady said my head shape was good, so maybe I will rock the bald look. HAHA yeah, right!
I'm starting out the day with OPTIMISIM, Ladies! We will all have a great day. Things will get better, lights will be brighter, and we will all kick this disease in the BUTT!
Love to All -
Laura
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Laura, I LOVE your enthusiasm! You go girl!
Shoshanna, thanks for the info. I was thinking that having three drugs at once might be more difficult physically, but I'm going ahead with it, as I'd rather get it over with 6 weeks earlier. I'm only taking some part-time grad school classes, not working (I'm on disability for another health condition), so I'll be able to take time to recover if needed. Thankfully, my professors are extremely understanding and caring, and have been very flexible with my ability to actually attend class after my surgeries.
jhenry, I'm sending you positive vibes that you can make the chemo decision that is RIGHT for YOU. Don't make any decisions without careful thought and input from others, but at the same time, be sure that your decision is YOURS. Good luck!
Peace...
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txstardust,
My chemo was postponed until they can figure why my bilirubin levels are high...I was hyped to start. Still waiting to hear what the next step will be.
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MaryNy same for me as Michelleboots - my onc didn't give me a choice re: FEC just told me that this is what I needed and I trust him.
JudgeJaclyn I also have the "mung mouth" not a bad taste but more like I have no taste - almost like licking too many envelopes or something like that.. AND I too have upper arm and underarm area more numb and painful to the touch since my chemo on Monday. I'm not sure what it is but it is a bit weird.
Anyone else have swollen neck glands? I mentioned that I had one swollen gland but now it's gone and glands on both sides are swollen. I actually blocked my ear drum this morning blowing my nose this morning. It's still kind of blocked but I knew that I had fluid in that ear (same side as the swollen gland from last week) and a sore throat on that side after seeing the GP about it. He said virus and didn't give me anything for it knowing that I'd be doing to chemo this week.
Today is a bit better as far as the nausea. I'm off my food - not like me at all - but I guess it's in part due to the tongue/taste thing but also the fear of seeing it all come back up again. I've actually lost weight. The steroids has not made me gain so far but given me a nice drier complexion and a rosey heathy looking glow!
The Neupogen injection went ok yesterday and I've got another one in just over an hour. That's 1 of 7 done for me! It hurt less than I thought it would but I'm not sure how I'll be able to manage it on my own. I can watch the needles but I just can't stand the thought of poking myself!
So far the bone pain has been minimal and mostly my lower back. I'm coping well with Tylenol and may try Clariton. I don't want to go with the Naproxen unless it's really necessary. I don't like the idea of having further SE's from a drug that's supposed to alleviate SE's - if you know what I mean.
I have decided not to go on the family vacation after Christmas - there is no travel insurance for pre-existing conditions that I can find so I'd rather not risk it and put my family under a further financial burden. I'll let my hubby and kids decide if they want to go without me or not. I've got friends and an ex-nurse Mother-in-law who would be wililng to move in with me if they do go.
Well I should take the puppies out for a quick walk before I got get poked!
Hope all goes well/better for everyone for the rest of week!
AND Happy Thanksgiving weekend to all the other Canadian girls in this group!
Marie
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Laura I picked up my real/synthetic wig yesterday too. I LOVE it! It needs a bit of bang trimming but I'll wait to do that for when my own thick hair is gone.
AND I am looking forward to trying on new styles and different looks for me.
So far I have 4 wigs - 2 are similiar and long and the other 2 are similiar to each other and short and dark.
While I was at the wig place I picked out another "flippy" style that I may need to add to my collection. Maybe for Christmas?
I know it may sound silly to some of you but for me a wig is just another hat except it's funner and can be sexier!
Oh and by the way - the kids have decided that I should go as Ghollum (from Lord of the Rings) for Halloween! That's teenagers for you!
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Marie...I had to laugh....we discussed Ghollum for me as well this year...another idea was to wear a wedding dress and veil and do my makeup very white/goth....and be bald<g> Yes, my family makes me laugh too.
I am day 8 and feeling fine all week. I have some minor lower GI issues and yesterday the dry mouth kinda started out of the blue.....but all are managable. I have energy and am going to the gym and shopping and regular stuff. Funny that while my hair is firmly attached to my head (and everywhere else) I have noticed that my hair is dull and fly away....I can't think that this is related as the chemo effect the 'growing' part of hair at the follicle...it shouldnt' effect the dead part that is hanging at my shoulders. Maybe it is just my brain working to get me ready to lose it----I may just be imagining it! I still haven't taken my wigs out or washed them or put them on their 'heads'...just not ready for that.....but I probably won't be ready even when it is time. I find that I am struggling with the hair issue much more than I want to. It is JUST hair and it will grow back....and I will have the rest of my life to deal with my hair....but it is just so dang hard to contemplate losing it! Oh well....like every other part of this journey, the anticipation is the worst.
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Hi Everyone,
Settled into chemo (nice bed, DH, computer) as I write. I had the port in this am and met w/ onc. 6 infusions of TC 3 weeks apart and no adriamyacin - also got tests back and no mets, no heart problems. So far a much better day than I had anticipated - the waiting and the first 3 weeks post dx has so far been the worst part. lets hope it remains that way . Interesting that MDs belief that adriamyacin doesn't add much benefit but increases se was the same as the research I read on these lines and some on my own.Hope all of you are well -good luck to Newtonville and enjoyful! Valerie
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Hi Valerie,
Glad to hear things are going well today (comfy bed always helps). Your tests results are good news also.
Hope you have a safe ride home and a peaceful night's sleep.
Jean
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ReneeJean, LOL at Ghollum. I didn't get that one. The thoughts around here were Sinead O'Conner and GI Jane.
We do have a Halloween party........but I'm chicken. I'm pretty sure I'm going as a flapper. That way I can wear a cap. Not everyone at the party will know I have Breast Cancer and it just doesn't seem like good party conversation. -
Hey ladies,
I'm on day 8 and feeling pretty good. I still occasionally have lower GI issues but not bad. It seems like days 3-5 were the worst. My energy is back now so work is not such a drain. I am having issues with things tasting right, but mainly mild flavors are just kind of gone. Unfortunately, the sweet things still taste good (go calories)!
As for hair, when I found out I had to do chemo I cut my hair in a bob and added a pink stripe in the front; my own pink ribbon. With the first week down I figured my time with hair was dwendling so I cut it very short this week to lessen the blow, both to myself and my kids, when it falls out in a week or so. Its kind of spiky on top and I still have the pink stripe - although it's only about 1 1/2 inches long now.
I have been reluctant to buy a wig as I'm not sure I want one. As someone else said, it just seems so final. The good thing is my coworkers threw me a hat & scarf party so I have plenty of fun options.
For those who are having a rough time (((HUGS))). I hope you feel better soon.
Everyone else, Keep up the good fight!
Suzi
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Hi Jean, Thanks for the nice thoughts, I thought about you alot today, the infusion room is really nice as are the nurses. Any less fluid for you?
Suzi - I don't want to wear a wig either but I got the script in case there is a day, a moment or a time when I might want privacy otherwise...... I like the hats and scarves.
So far no se from anything but also some lower GI cramping. I heard days 3-5 r hardest too. but knock on wood day is ok. God bless will check in later. Valerie
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Question for y'all...
I am supposed to get my flu shot tomorrow in preparation for chemo next week. Of course, tonight I wake up in the middle of the night feeling like absolute caca - sore throat, stuffy head, but no fever or anything. Should I get the shot tomorrow (actually, it's later today to be more precise)? And, if it's simply a cold, will I have to put off chemo until I am feeling better? I don't want to wait any longer than necessary! I really want to get started - the sooner I start, the sooner I finish.
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I am at day 7 today, and finally starting to feel a little better. Had my first tx of Taxotere last week, and am actually not quite sure of my schedule yet. Instead of doing the once every 3 week infusion, my Dr. and I decided i would do weekly tx., once a week for 3 weeks. However, when I started last week, he informed me for the first tx., he was going to wait an additional week. So, I go in today for my bloodwork, and then will not have another tx. until next thurs.-kind of confusing...well, the first 2 days I did pretty well, I was up and moving around, and actually didn't feel bad, until...day 3. Was totally wiped on days 3-6, and pretty much unable to even get out of bed. I did do alot of sleeping (which is good). Have not been able to eat much at all, its getting worse, but I have had this problem for many months. I have had a slight neuropathy in my right hand, some lower back pain for a day, and have been pretty dizzy. With this sched., I am guessing I may have my hair for an extra couple of weeks longer than the norm. Just hope my counts aren't down too low, because I really don't want to have the Neulasta shot. It's so ridiculous the cost(I hear), and really don't need any bone pain(I have bone & lung mets). Of course nothing gets done around my house, and my husband is miserable most of the time. This makes the battle even tougher, and its so hard to fluorish
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KLee,
Wow, every week - that's a tough schedule. I wonder how your body is supposed to recover from that?
I'm sorry to hear about the mets. A serious dx like that can really take a toll on relationships, it seems. I hope this treatment helps your situation, and that you get your energy and motivation back, and the hubby's disposition improves.
Peace,
Shelby
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Hey txstardust - I got my flu shot 10 days before chemo and came down w/ strep throat and as long as I was on penicillin that was fine b/c white blood cells don't drop for a week after first infusion. So they gave me a little penecillin in my chemo so I did not take the pills that day (forgot my penicillin) ans I am good today. He was however very definite about the flu shot (not H1N1). The flu shot itself tho does affect your immune system but I would lay low and call onc about it all but that was my experience.
KLee - What a complete heartbreak - I am so sorry that things r so hard - r those your kids?
A very wise man once told me you can do only one thing at a time. When life gets overwhelming I repeat that mantra alot these days. Love to you all - Valerie
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Hi Valerie- glad you're up and about this am....hope it's a good day. I see the surgeon today to get the drain out (it has been sliding out on its own..eek) I am still draing 70-80cc a day so don't know how my body will handle fluid without it.
I will see my onc Thurs 10/15 and hope to get chemo started soon.
Last night was weird. I had my son's high school open house. Most people there don't know about my diagnoses. I kept answering the "how are you?" general question as "fine" and kept walking. I kept thinking "It's a good night and I feel good" so the answer was accurate.
I too am not sureabout the wig but I am a preschool teacher and hope to work as much as possible during chemo. I am afraid my bald head would freak out 4 year olds!!! They are so honest, I can only imagine the comments coming my way. So wig and work will go together.
take care, Jean
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Hey Jean if u start 2 weeks post onc visit/tests etc u might get your infusion the same day as i grab #2! But I think you get a private room for the first one - after that it is only by request and need. I am glad you feel "fine" tjats a good thing - we should all hold onto it. I still feel good and again it is that damn "unknown" thing! I am torturing myself with when will the REAL side effects start. Ugh-let it go,,,,,,,,Hope all is well as can be with everyone..Peace, Valerie
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Valerie, I truly hope that you are able to get through this with a minimum of problems. And you are right - the unknown is the worst part of ANY situation.
I'm having a pretty crappy day myself, and it has little to do with the bc. It would be nice if the other problems in our lives would take a hiatus during this time. I'm dealing with a lot of fear about my future - money issues. I've been homeless before, and I don't want to go there again.
I'm sorry to be a downer.
Shelby
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Hello Ladies!
Started out with a bad headache this morning (and slimy taste, I do not think that is going away). But I got out of bed, took my thyroid and poured myself a cup of coffee. Seemed to go away a little.
As a side note!! I am at the point where I would RATHER have diarrhea than constipation ANY DAY! And Senekot-S does NOT work. Thank God for coffee. Please do not let me get hemorrhoids!
Now that you've had too much information - HAHA - I went on a little walk with Fabio today. He sat in his stroller, and when we got back (once around the neighborhood), he just plopped down on the tile and acted like he was tired!! I didn't push it too much. May go again this afternoon.
Knocking on wood because I haven't been really sick or vomiting. I know this weekend could be the worst, and I know that the tx's are supposed to be a little worse each time, but I am just going to be optimistic. I will lay low for the next few days. After blood work (and assuming all is well), I MAY try to do dinner with friends next weekend. I need something to look forward to. Will my sense of taste be gone for the whole 5 months? Or will something come back in between? I guess its good for the diet, but I really, really do love food!
Buy stock in Purell Hand Sanitizer! I'm going through a lot!!
Love to All -
Laura
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Everyone,
Well I am back on for chemo on the 16th...Lets hope my blood goes better this time...
Michele
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home again - this time drain free. I also got last AND test results..there were 10nodes taken and report came back clear margins and no cancer in these lymph nodes. hooray...the news brought my 21 year old daughter to tears.....sweet thing has been so worried.
-txstardust sorry you haveto worry about more than just cancer. I know money is one of my big concerns...not sure if I can teach school through chemo...it's one more burden with the BC. Does your hospital have a social worker you can talk to.? I found at my hospital they have a person on the breast cancer floor who is in charge of helping anyone with BC who asks. That person may be able to give you some resources for help.
- Valerie..hope day 2 will be SE free for you. I will look forward to my private room--such luxury
take care, Jean
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Hi everyone,
I am starting chemo next Thursday. TC x4, every three weeks. I'm happy to be able to connect with others in the same treatment time frame.
I had a bit of a low point yesterday -- I guess being a week away from starting chemo made me realize this is really happening! I am a freelancer and I had been planning to do a job that would take me out of town during my treatments for a month. I was going to commute back and forth (3 hours each way) for weekends and treatment. The blessing of yesterday's anxiety was that it made me realize that, although I know lots of people work right through their chemo, I just do not know what it is going to be like for me. I do not want to be travelling and dealing with SEs alone, away from my partner, friends and the comforts of home. Although it means a loss of income and I feel a bit guilty towards the organization I was going to be working for that I didn't figure this all out before (but I just decided on chemo a week ago, up until then I had been holding out hope that I would just need radiation while waiting for my Oncotype report), I resigned this morning. Happily, I've been able to present them with several highly-qualified possible replacements and I feel so relieved that I admitted to myself this was absolutely nuts before I got myself in a situation where I was totally stuck.
Thanks for being here! I look forward to following your stories.
Jennifer
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Hi All!
I'm on Day 5 after my first FEC TX.
I'm feeling a bit run down - achey - but still truckin' along!
My tummy issues have been resolved and my appetitie is better - ate normally on Wed and quite a bit yesterday - I'm craving salty not sweet which is a real switch for me.
Stuff like Lipton's Chicken Noodle soup (the stuff in the box), diced tomatoes, green olives etc...YUMMY!!!
This morning I was surprised to realize that I haven't had a BM since Monday morning pre-TX.
Laura I am a coffee drinker too but lately I just don't have the taste for it. I'm finding it too biter and the smell is putting me off right now. That's too bad because - forgive the TMI again - it gets my plumbing working!
I spoke to the nurse about it this morning at my Neupogen injection appt and she told me 22 green grapes.
I have no idea how they come up with THAT number but I ate 30 of them mid-morning because they tasted so good and a few hours later I'm happy to say that it worked!
So my suggestion to those of you who are having BM issues (constipation that is) try the grapes and hopefully they'll work for you too!
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