Starting Chemo May 2008
Comments
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Hi all.
My name is Karen and I'm new to this site. I will be starting chemo on May 27th. TC (x4) at Walter Reed.
I'm terrifed of having chemo. I finally accepted the fact that I will lose my hair (bought two wigs), but not knowing how I am going to feel physically or mentally is agnoizing. I was fine until I toured the ONC clinic and it just made it real for me. The onc did prescribe Ativan, but not many. I've been very depressed and am finding myself sleeping more than normal. I just want to get the first treatment over with. Once I do that, then I know what I'll be facing.
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Karen: I feel ya. I too have not yet started tx, mine begins 5-22 with port install on the 16th. It's the not knowing what to expect since as they say it's different for everyone. I think this board will really help us get through this and we will be fine.
I don't really have any words of wisdom since I haven't started yet either, but I will be here if you need someone to talk to. I find myself constantly lurking on this site.
Wishing you peace and calm in the days ahead,
Tina
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Thank you Tina
I think once we get through this first round, we hopefully won't have the anxiety about it (or as much). The surgery part of this was a piece of cake for me and I had three of those. I was never scared, which is odd. The only part of surgery that was hard was the waiting for the results. This time though, it's with all the side effects that freak me out.
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Hi Karen - I know that the unknown is the pits. For me, it hasn't been as bad as I was worried about. There are some great tips, in this thread (as well as others) for getting through chemo and/or some of the side effects. One thing I have learned from reading the boards is that everyone responds differently but there are also common issues. As you get closer to your chemo date, hopefully many of your questions and concerns can be addressed. We are all here for you.
Diane - it looks like your treatment "cocktail" is the same as mine. I've got treatment #1 behind me, so we'll only be 1 week apart as we go along.
Carla - I'm so sorry to hear the indigestion won't go away. Have you tried something as simple as Tums? I'm sure there are a ton of products out there....I have no idea what is best. I had horrible burps and the Pepcid worked for me. I hope you can get some relief.
~Adrienne
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Hi Karen,
Welcome to the group. I had my 1st treatment May 1 (TC x 4).
You will be taught about the SE particular to the chemo you will be getting. From what I've read on this site, and on a site specific to Taxotere/Cytoxan each person responds individually. What bother one person may not be a problem for you. In other words, your experience will be your own. You will however gain much insight and advice from both threads. Take your time reading the T/C thread, it's lenghty but helpful.
My onc gave a very adequate amount of Ativan, with refills. Depression was discussed and I was encouraged to speak up if I felt it was a problem. They do not want this getting the better of any of their patients and I am sure your onc feels the same. Be bold and talk to them.
The actual first time "in the chair" was no big deal for me, and for most of the group. The infusions are smooth, usually uneventful. I was so anxious it was almost anti-climatic.
OK...I've babbled enough.
Come back as often as you need and be sure to join the T/C thread.
Robin
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Has anyone experienced a change in their vision? I've had one treatment T/C and I definatley do not see as well. I wear progressive lenses and it's a chore to find that visual center. And when I take them off, my near vision is worse than it was before chemo. Can hardly see to put on makeup.
Robin
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Oh, boy! I can help with some of these questions!
cmbe123/Carla, the indigestion I had during tx #1 of my TC regimen just about killed me. I couldn't eat, I couldn't lie comfortably, I was burping and had the hiccups all the time; and I think (according to AlaskaDeb) the indigestion even contributed to my week-long bout of diarrhea. OTC/generic "Pepcid" twice a day did nothing to stop the indigestion. So, for tx #2 I switched to OTC/generic Prilosec (omeprazole). My onco suggested that I take 2 tablets of omeprazole a day (20 mg each) instead of just one. The OTC label says one, but my onco said the prescription dose is higher than that. That did the trick--with an OTC/generic omeprazole every 12 hours from day 3 through day 9, I had no indigestion at all during round #2. Check with your onco before you double the dose like mine said to do, though.
gogators, I'm still a little gun-shy about messing with my GI tract before I know what it is going to do. I've had only mild, short-term (2 days) constipation, but I've had diarrhea for as many as 7 days. The lack of constipation might be because I am not taking the strong anti-nausea drugs many women are taking. So, I don't take stool softeners/laxatives until I get home from my chemo tx. Then I start out with just one OTC/generic Colace that night. If that doesn't work, I'll take 2 the next night ... and that usually does it for me.
As for worrying about going to the bathroom during your chemo tx, there should be a bathroom nearby. My infusion center has two restrooms right in the middle of the infusion area; one is reserved just for chemo patients during their treatments. We unplug our i.v. monitors from the electrical outlet and wheel them into the bathroom. No problem. Be sure you are wearing something you can get off/down easily, if you are getting your chemo through a vein in your hand.
Roxi and drcrisc/Christine, I also heard that the risk of nausea from chemo would be similar to the risk of nausea from pregnancy or from motion sickness. I don't know if that's true; but when I told my onco I was very susceptible to motion sickness, she decided to write me a script for Phenergan to take at home if necessary. Otherwise, she didn't think I would need any specific anti-nausea drugs on the TC regimen, which isn't supposed to be as "emetogenic" as some of the others. I also get Zofran and Decadron in my i.v. and Decadron at home. Turns out, I've only taken two of the Phenergan tablets; day 2 is my "queasy" day.
Welcome to all the newcomers! I'm normally in the "April 2008" group, and in the "Just Taxotere and Cytoxan" group. We do cross over once in awhile, though, to share experiences and questions.
otter
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Hi Girls-
I have just went though all of this and will be starting chemo this month also. I had my lumpectomy on May 1st will be seeing the onc on Wed May 14th.I don't know what to think after reading the posting if I have made the right choices or not. I have been Dx with IDC, 5.3cm, stage IIIA, grade 3, 1/3 nodes ER-/PR-,Her2-
They have had us on a rollercoaster for 2 months now- one minute things are fine nothing to worry about the next minute they drop bombshells like this. I need help to know what I should be doing is right.
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Carla - I hope you found something for your indigestion. I just remember chewing Tums like candy when I was pregnant!
Tina - I hope the penne pasta your son made was great - and didn't give you indigestion! LOL
Karen - I feel you. I had the same reaction to the "tour" at my onc's clinic. I stopped dead at the entrance - probably looked like a deer in the headlights. I could hardly walk all the way through. There was no denying what was going on in that room and it terrified me. I have never wanted to run out of a place so fast and I couldn't take in all the nurse was telling. I've been back since then, and it was better. It sounds like we may start very close (I'm looking at the 22nd), so we'll have to keep in touch. Keep posting, it helps.
Otter - Thanks for all the info! You're great!
cstock39 - No one but you will know if you've made the right decision. But there is a lot of information here and online in general and there is a lot of support here, too. From what I have read, if the margins in your surgery were clear and there are no other lumps, then breast conservation (or lumpectomy) is a good choice. I know there are many reasons one might still choose to have a mastectomy, but it's your body. Also, I remember when I first was told I would need chemo and it was not when I was first diagnosed. I felt like I had "bomb" dropped on me and then realized that they can't always tell you everything until they (the docs) know as well. Generally, they need information from your biopsies to determine if you will need chemo and what type/for how long, etc. It is a lot to take in, but you will. We all become cancer experts before it's over! Keep reading, keep posting and know we are here to support you.
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Carla - after trying Pepcid and OTC Prilosec, I ended up getting a prescription for Protonix for the acid indigestion/reflux. It's helped a lot.
Cstock and others who are just getting ready to start chemo -- definitely read all these boards and learn about everyone's experiences. It really does make it less scary -- it did for me anyway. I had my last A/C tx on Thursday -- I'm feeling kind of lousy today but I'm DONE, it is doable and it will end.
Lauren
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Karen and everyone: I do wish I could offer some meaningful advice as you prep for chemo. Try to be as kind to yourself as you can be and look for ways to help yourself relax whether that is a bubblebath or a neckrub or a dumb movie night with girlfriends ("Blades of Glory" anyone?) or playing a silly board game or dragging the guitar out of the closet or (preferably) all of the above. I promise: Doing things to reduce the stress/relax makes everything easier. So when in doubt, put down the scrub brush or the shopping list and try to find a way to unwind. Them's my two cents.
My days 3, 4, 5 after A/C (the first) were fine. A little achy, fatigue-y but fine! I didn't take any drugs, just ate little slices of quiche most of the day (and some grapes) and went for a couple walks.
I think the approach of small frequent bland-protein meals and moving around has helped. Oh, and I've added "avocado with a little olive oil and black pepper" to my list of constipada and anti-queasiness remedies.
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Today is my chemo class day and I also am going to the wig shop with my hairdresser. I hardly slept last night thinking about the hair issue mostly. My port will be inserted on Wednesday and 1st T/C treatment on 5/19. I've been trying to look ahead at my calendar to decide what I should cancel and what I might be able to attend and it helps to have read what others have experienced. I'm hoping the chemo class today will be useful. While I have been trying to "escape" the stress with reading or needlepoint, I know I need to do a little cleaning around here or I'll regret it next week. Hang in there everyone.
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Well, I thought I would be starting chemo in April and started a thread to that affect, but here I am in May. Had my first round of FEC on the 8th. Went through 3 oncologists before choosing one. I had one who was very compassionate, but her staff was too overwhelmed and kept making mistakes with my charts and appointments. The next guy was so autocratic he would barely listen to my concerns let alone discuss them with me. Finally went with a doctor recommended by an aquaintance who had recently finished chemo for breast cancer. Glad I checked him out. I was almost ready to skip the whole chemo scene and go with alternative therapies because I was so concerned about the long term side affects of this stuff. I have a cousin who went that route 5 years ago who is still here and her cancer was staged almost the same as mine and she only did the lumpectomy and AND same as me.
So far the side effects have been minimmal. A couple of bad spells of nausea with profuse sweaty on the first day, but soon learned not to let my stomach get too empty or too full. Lots of energy the first two days, but fatigue really kicked in on the third. Went to Curves the first day of chemo and participated in the relay for life event the next night. Lots of wonderful support from the community. When they were calling off the names of cancer survivors and victims my husband was leaning over to say how God knows all those names by heart just at the moment they called my name. What a special moment. Made a new friend and ally with our new manager that night. It turns out he lost his first wife only two years ago to breast cancer. He was very tender towards my husband and I, so I feel much more secure at work now since my direct supervisor has been somewhat of a problem through all of this. So today is starting out good, this is the first morning my stomach hasn't woke me up to tell me feed it or else. Only taking one anti-nausea med today and may not need it much more. So far, so good. I'll take some time to read the other postings to get to know who my chemo buddies are.
Kat
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Kat, so that's where you've been! I'm in the April group, and we're grateful that you started that thread for us. Feel free to stop by, even if you hang out here most of the time.
Karen and Christine, about that "chemo class" you had and your deer-in-the-headlights experience in the infusion center... Maybe that explains why there was no "chemo class" where I'm getting my treatments. My infusion center is nothing to brag about--no collection of videos or paperback books, no TV screens, no headphones, no free lunch. Just plain old naugahyde recliners, i.v. poles, and an occasional offer of juice or crackers. There isn't even enough space for a friend or loved one to accompany me, unless I'm lucky enough to end up assigned to one of the 3 hospital beds instead of a chair. No wonder they didn't give me a tour in advance. I might not have shown up on the day of my 1st treatment!
As some of you are learning, you can read on these boards and look stuff up all you want, but everybody's experience with chemo is unique. What happens to one of us might not happen to you; and what works for some of us might not work for you. The first treatment can often help you figure out the pattern; but even the individual treatments won't be the same each time.
Life is full of surprises!
otter
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Otter,
good to hear from you, hope your treatments are going well. I spent some time on the alternative sights because I was so on the fence about doing this. This last onc was able to convince me this was a good route to go. He is much more understanding about my concerns. I am going to try and minimize the side affects through nutrition and exercise, but my husband said if I didn't do the chemo and I died he would be a very angry man and I figured if I DID do the chemo and I died I would be in heaven and really wouldn't care!! Better not to leave and angry man behind. It doesn't help that my mother died from the side effects of her chemo and not the cancer. I will be much more cooperative and proactive about my care than she was which is why I had to find the right doctor that I felt I could trust. I will try to pop over to the April site from time to time to see how you are all doing.
Kat
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Ladies: I have read back through all posts and have compiled a list of start dates. Please check the list below and let me know if I missed anybody or got dates wrong. Hope this helps in keeping track of one another.
March 27: LorenaB
April 3: Otter
April 14: susanblues
April 22: angie27
April 23: Beachmom
April 24: Kristy
April 25: clg47, tiff2008, annie39
April 28: The Other Half
May 1: RobinK, mpellot2004
May 2: eyesotex
May 5: eak2863, craftygal
May 7: familyroks, rockthebald
May 8: Angels, cbme123, haykat57
May 13: Roxi
May 14: cstock39, tomatojuice
May 15: Diane0803
May 16: dsub
May19: collector
May 22: rogam, gogators
May 27: karebear43, danismom
~~~no dates noted for Laureg, drcrisc, Lani, corkyandme, Sandeelou, Becky--IL, Kpopperwell, Stepeliz (for mom), flyrzfan~~
To all who start today/this week I hope your bartender is friendly, and your lifeguard cute!
Robin
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Kat - that's a heavy burden you described. All i know is that when this is over (chemo) for me I will know I did everything I could to give myself a good shot at long term survival and greatly decrease my chance of recurrence. You'll be able to say the same.
How are you feeling today?? Hope you weekend was uneventful.
Robin
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Carla, hows it going girl ? I hope you have that indigestion under control.
How are you feeling otherwise.
Roxi and collector good luck with your ports, you'll do fine..let us know how it goes !
Kat what a touching thing your husband said to you at the relay, it's sometimes the little things they say and do that mean the most
I am on the same FEC as you & started on the same day sounds like you are doing ok too. I can't say I have ever been nauseas, just on day two felt a little funky in the mouth and really tired, I have been able to eat , i just keep it small and more often, and am trying to keep up on the fluids. But after that barrell full of water i had the day before, during and after it's hard to drink alot now. But for the the new girls, I think this is very important that they know to drink, drink , drink,...and pee, pee pee......it might of helped in how i feel now. Also I have been diligent with the baking soda rinse 3 or more time a day.
The only thing that turns my stomach and it's not even food is the purell hand sanitizer i have strategically place all around the house. I made the mistake of getting scented , so that is my mission for today, go replenish the house with unscented !
I'ld like to say I almost feel normal but I'm not quite sure what that is anymore!
I am a little worried though, my daughter as been caughing up a lung the last few days, and poor girl I have been on her so about the caughing in the arm and hand washing hands and such. How worried do we get if we just get a cold, with no fever just a cold? My low time is coming up so I'm wondering and a little concerned.
I have rambled long enough good wishes to those with ports and chemo coming up... angel hugs your way !
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Robin -- THANKS FOR THE LIST!!
Angel: I wish I had an answer for you. I wonder, too, how paranoid/vigilant are we supposed to be?!
Today I started thinking of contemplating the possibility that at some point I will perhaps need to consider the potential for the purchase of . . . a wig.
I plan on the bandanna or baseball cap approach but there are a few professional occasions where a wig is in order. (I have a prescription for a hair prosthesis, but I'm not sure how it's supposed to work!) -
rockthebald,
"Today I started thinking of contemplating the possibility that at some point I will perhaps need to consider the potential for the purchase of . . . a wig."
LOL!!! That's exactly what I do, almost every day. And, by the end of the day, I still haven't gone through with it. Like you, though, I know there are some events for which a bandana or baseball cap just won't cut it. Also, and I'm not sure I understand this, my dh will--out of the blue--say to me, "Well, do you think you might want to go wig shopping tomorrow?". I keep quizzing him to see if he is hinting that he doesn't like my fuzzy-bald head, but he says, "No, I just think you might be more comfortable in a wig." I really, really doubt it, since I am growing so accustomed to lounging around uncovered or at most with a bandana or scarf. But maybe eventually I'll have to break down and consider the possibility that I might need to shop for a wig. But not necessarily buy one, of course.
otter
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Rockthebald and others, if you like to wear hats, check out the "hat with hair" half-wig thingy on headcovers.com. It's only $35, much cooler than a real wig, and looks surprisingly natural. I bought the curly one in a medium-brown color. I may have mentioned that I have three good wigs (thank goodness my health insurance paid for two of them) that I never, ever use -- I just wear my "wiglet" and a fun hat whenever I go out, including in the office.
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Hi all, well as my luck has it my chemo was rescheduled for May 27. I was supposed to have my first treatment tomorrow but since I was diagnosed with shingles last week and have three open wounds my onc said we needed to wait. I was all prepared, mentally, to have it tomorrow. I am so depressed. I just want to get it going and get done. I've been so upset not knowing what kind of se's I would have and now I've got to wait another 2 weeks.
I went to the cemetery to take my mom flowers yesterday for Mothers day and just broke down. I need her so much right now and she can't be with me except in spirit. I know she would be with me every minute through this if she could. My daughter went with me and I made her cry too. I really hated that I upset her so much. She's been such a big part of my support. Actually, she's been my backbone, always telling me "We'll get through this, face it head on and beat it". I know she's as scared as me.
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Hi everyone,
Just got back from my Look Good Feel Better class at the hospital. It was great. I got a chance to try on some wigs and even received a great sleep cap as well as a ton of make-up to keep. My port was inserted today as well. They left the needle in since I start tx tomorrow. I'm working a half day and going to chemo at noon. I'm actually looking forward to getting back to work. I've been out since my lumpectomy on April 2.
Thanks for the list Robin. We have so many gals out there undergoing so many different types of treatments. You've all been such a great resource of knowledge and compassion and couldn't do this without all of you. Wish me luck tomorrow.
Danismom...I know what your going through. I lost my mom seven years ago and its hard not having her here with me. I also find church quite difficult lately as well. Find comfort in your daughter and she will find comfort with you.
Roxi -
Hi Everyone,
I went to work today in my wig- its the first time I have worn it since I lounge around commando and have worn a hat or cap other places. My hair started falling out Saturday so I buzzed it- so the hat/scarf/cap/wig requirement is kind of new. Everyone at work thought I had given in and had my hair cut and colored so I think the wig looked fairly natural. I really prefer the hat or scarf thing and I dont think I will be able to handle the wig on an 8 hour day in the Texas summer- today was a half day due to my daughters oral surgery. My husband actually prefers the commando look and thinks it is kind of cute- Im not there yet on that one- it just feels too obviously cancer for me right now.
I go for chemo #2 on Thursday - I have treatments every week, but only every third week is chemo and the two in between weeks are herceptin. My herceptin last week was the first with the PICC line and what a relief to NOT have all the IV pokes and blood draws. This will be the first chemo with the PICC line. I got the same crazy nurse as my horror story and she was a lot better this week (of course she didnt have any needles this week)- and it seemed like she was way less hyper than the bad week- so that was definitely an answer to prayer.
Hope everyone had a great Mothers Day- we were pretty laid back, cooked out at home- but it was a lot of fun and very relaxing!
Kristy
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Kat - Welcome to May!
Robink - What a huge and thoughtful task to go through and post that list. I should have a date sometime this week.
Rock - I had to read that sentence about buying a wig about 3 times...LOL!!!
And LorenaB, I was just looking at the "half-hair" wig last night on headcovers.com - looks pretty cool. Literally, as it can get over 100 degrees up here in August/September, so that sounds good to me. I don't think I'm a turban type though...
Roxi - Thanks to you I found a Look Good, Feel Better class near me and am going to try to go next week. Glad to hear it was helpful and positive. So much of what we're doing now is not so much...
Danismom - sorry to hear you have to wait. I'm waiting, too and it's hard, especially when gotten yourself mentally ready for something. I will send healing thoughts your way...
To all those starting/having chemo this week, I wish you an SE - free experience!
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Hello to all,
I've just spent forever reading this thread and realizing I've been gone too long! robink (I think) thanks so much for the list, and rockthebald I like your hints; even though this is my second round of treatment I learned a lot (esp. about the nether regions). I have everyone confused in my head as to who you are; hopefully I'll get you all straight some day!
Kat, my husband and I both grew up in Alice, TX and his father is still a doc there! (That's close to Corpus Christi FWIW)
My dip in the pool and swim to the bar has covered 2 treatments of Cisplatin/Gemzar, 1 week apart. I get Decadron, Aloxi, and Emend for nausea. I have to take metoclopromide (Reglan) for the migraine that one or all of these drugs gives me! Apparently, the pattern will also include 3-4 days of "constipada" as rtb says, and then 3-4 days of diarrhea and cramping.
Oh, as soon as I get hooked up (I got another port put in...just had the last one out in November, I think) I start getting the tummy rumbles, burps, and generally feel like someone hooked me up to an air hose. I take Prilosec but I've found Phazyme helpful also. I've been waking up at 2 or 3 am nauseated and with stomach ache...who knows?
I have a week off and then another treatment May 23 if my counts are ok.
My love and concern for all of us, including husbands and daughters and everyone else.
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Danismom and moms:
I apologize if this comes out wrong or is "too much."
My mom had breast cancer when I was 10 and she was 40 (5 of us kids; my little brother was a baby, we lived hours away from the "chemo hospital"). Her mom had just died a few months before. Today, Mom is alive, healthy, and wonderful. (Disclosure: There was about a decade where it certainly was not a mother-daughter lovefest!)
Yeah, I'd prefer neither of us had cancer. But honestly, I am so proud to be my mom's daughter. My mom gave me a huge gift by showing me how to cope, how to be strong, how to laugh and yell and play and and work and keep going.
May none of your kids ever go through this, of course. But honestly, from my experience, I am grateful, SO GRATEFUL, that I have my mom's example of how to cope and this wonderful image of her during that time... It means everything (inc and esp now when she's 1,000 miles away and nowhere near an airport).
*****
Now, I'm waiting for results of gene-testing. I've been told the likelihood of a positive result is high. I'm okay with that. You see, they don't have a test for "Leona" (my mom). I am pretty sure Leona is the best d**ned gene of all and it is definitely stronger than any ol' cancer.
Lots of love to you moms, from this daughter.
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The "Leona" Gene! I love it! Hope my daughter feels that way...
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Hi everyone Robink -please add me to your list.Would love to join this group. I started chemo(TCH) on April 23. My second treatment is tomorrow May 14. First one went pretty well. No nausea, no diarrhea, no constpation. Day 4-metallic taste-lasted a few days. . Day 7 -got a cold(runny nose)for 6 days. Also small rash on my face. All in all not too bad. Hoping the second will be pretty much the same.
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Hi, everybody--
This is just a quick note to say I'm with you all, in sympathy as you battle those first-week SE's, or in spirit as you enjoy that 2nd or 3rd week of "good" days. My 3rd tx of Taxotere/Cytoxan is tomorrow (May 14). I will get one more TC tx, on June 4, and then I'll be off on a 5-year (or longer) adventure with aromatase inhibitors.
Robink, I made a schedule of the women getting "just Taxotere and Cytoxan," and I posted it on that thread. There are 48 names on that list, counting those who have recently finished (like chj127, artsee, and a bunch more), plus a few others who may not be getting TC but I've listed them there by mistake. If anyone here on the May 2008 thread is getting "just Taxotere and Cytoxan," please stop by that thread and check the calendar for your name. Let me know if you see any mistakes.
Oh, rockthebald--that's a wonderful story about your mom. It certainly is something to keep in mind, for those of us who have children watching us go through this. My mom was in her early 20's when her mom got BC. My grandma's tx was brutal but successful; she died 20 years later of something totally unrelated. I always figured my grandma was very strong--she never talked about her BC experience; she just stuffed a handkerchief in her bra on the "flat" side and went on with her life. But, when I ask my mom about that period in their lives, she mostly talks about fear and suffering and inconvenience. So, I don't know if that's how my grandma felt about it, or if that's how my mom reacted to it. I will probably never know, since my mom is reluctant to talk about it. Bad memories, I guess.
Hey, enjoy the good weather (if yours is as nice as mine is today), or hunker down if you are having storms (like we will later this week).
Hugs,
otter
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- 9 The Political Corner
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- 285 Who or What Inspires You?
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- 50 Immunotherapy - Before, During, and After
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- 109 Welcome to Breastcancer.org
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