Any May 2009 Chemo Starters?
Comments
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Hi Lori-
The usual protocol has been 4 t/c's for my breast cancer and stage. However, my onc (City of Hope doctor) said that there is brand new research stating that 6 treatments have better results. So here I go---followed by 6 weeks radiation and hormone suppressing drugs.
So far so good. The onc said that if I can't tolerate more than 4, we'll stop.
Jo Anne
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I just went back and looked through some of the earlier posts and noticed that Sukiann and Lassie11 had made some comments to me that I didn't respond to. So sorry. Although I have this topic marked as a favorite, I haven't been getting my emails from this topic letting me know when people post, although I do get them from other "favorite" topic areas.
Sukiann and Lassie11 I truly appreciate your kind thoughts and responses. I get a little overwhelmed in this site sometimes because there are so many posts, I tend to lurk in the Triple Negative section a little more, because my mom is triple neg. However, in looking back through these posts, I need to spend a little more time here. You guys are all great and very helpful!
My original post ended up being a little inaccurate. My mom was invited to participate in a clinical trial for a new drug, Sutent, so she had a port a cath inserted and started chemo at the end of May, not May 12. Her protocol is weekly chemo, not dose dense. She has weekly Taxol for 12 weeks and takes the Sutent daily. Then she will have weekly Adriomycin and daily Cytoxan (oral dosage) for 15 weeks, still with the Sutent. So she doesn't have a lot of downtime between treatments. It's kind of hard on her. She has had three weeks of Taxol, but this week (what would have been her fourth treatment) she couldn't do it because she is neutropenic. Her white blood cell count is too low, so now she has to begin neupogen shots (its same as Neulasta but must be given daily instead of weekly) four times a week. She's not a happy camper about that as she has a needle phobia and the neupogen shots can't be given through her port but have to be given subcutaneously. Because of the neutropenia, she now has to wear a mask and latex gloves to try to prevent infection.
Tonight she got a fever spike so she is now in the ER getting more blood work to check her WBC and see if she needs to go on antibiotics. This process is very stressful. I am hopeful the neupogen shots will help her WBC count recover and she will be able to resume her chemo on Thursday. It's all very overwhelming. If not, they will have to lower her Taxol dose.
All of this is neo-adjuvant chemo to try to shrink her tumor (5-6 cm, stage 3b, grade 3, triple neg) before the surgery. Then she may have to do more chemo after the surgery. It's exhausting.
Not really any questions here, just venting a little and reintroducing myself to the group since I have been off the grid for a month. I will be more diligent about checking this topic site in the future.
Mary, I noticed that you are also triple negative. How is it going for you?
Everyone, good luck in your treatments and have a great weekend.
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taj- Honestly, I don't give the triple negative part a whole lot of thought. There are plenty of long-term triple neg survivors out there and I intend to be one of them also. If I went by only what my breast surgeon and my oncologist told me, I wouldn't know triple negs were any different than any other breast cancer. There are so many factors that go into a diagnosis. That is only one factor of mine. I am so lucky that my nodes and margins were clear. I wish they would call it something else honestly because of the whole negative connotation. I rarely read the triple neg board here because I found it to be pretty negative on a whole. That's just not where I'm at right now. Life is good for me despite doing dose dense chemo! I consider my cancer gone as of the day I had surgery. I now say I HAD breast cancer and I'm doing chemo to make sure any stray cells that might have been there will be gone too. Maybe that's naive, but honestly, that is how I intend to deal with it unless life throws me another curve ball. And then I'll deal with that. So, all that to say...how's it going for me? Very well.
There are several other triple negs here too.
Your mom is in my prayers.
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Hi all
Just a quick pop in to say HI!!!! to everyone.
I haven't read the posts yet. Been relaxing with my family.
Take care and hope everyone had a good day - big huggles
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Good Morning May Marvels!
Debbie 6122--Hey Keno brain --wake up!! BCFF
Lassie11-Yes- Foob stands for fake boob! Iam going thru expansion with my TE and they are expanding everywhere but straight out!! I still have to wear a foob for some curve in front they still look flat in a shirt, actually square! Can't wait till they pop out and I don't have to wear anything! I also have a seroma on my side, hate it. Noone wants to drain it till after Keno and exchange. Ugh!!
Ms Pig-I had a reaction to taxatere drip both times. My lower back starts to spasms and gets very intense pain!! This time I caught it early so it wasn't so bad, I didn't wait to tell them like the first time. As soon as I felt a twinge I called the nurse. They start me up to fast. They have to stop the infusion, flush it, give me some steroids and run saline along with it (which I like to dilute the taxatere more than Iam by drinking water). Then they start me up slow and keep bumping me up. I was ther 6 hours the 2nd time because they started late on top of that. Iam just going to ask to start it slow and give me saline next time!
Texas Rose-How are you? Iam on Taxatere/Cytoxin 4x every 3 weeks. I hope it is enough! Glad your doing well with Dos Dense! that is great. I still didn't get my camper cleaned! It has been cool and rainy here in Michigan. Great for my hair!! I did loose some by my temple because I stuffed tissue paper under the cold cap by my temple, it was to cold on my skin. I must of pushed it in to far!! I know I would be bald for sure by now after I seen that. At least I wear my hair on the side and you can't see it. Iam thinning but not noticable at all yet. I have to get thru 2 more tx. Staying in prayer!!
Indomitable1--Do you take B-6 and B-12 for neuropathy. I started taking B-12. What is the difference? Should I take both? Or one or the other? Thanks!
Titch--Hello there!! Glad your spending quality time with your family! That's what life is about!!! That is great! Have a nice week-end!
To everyone else--DITTO!! Hope everyone is doing well. You's are always in my prayers-Geri
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I'm with you TexasRose - I don't dwell on the fact that I am triple negative. It's just another diagnosis. I don't read the triple negative post much either, because you are right, they are negative. I don't need any negative in my life right now. I am so blessed to have found this group of ladies called May Marvels because we try to keep everything upbeat and positivie. Yes, we whine and complain, but we get over it. We are here to support each other and get on with our lives.
I read in one of the post about the "monthly visitor" can't remember who asked it (chemo brain ya know) but I got up this morning and low and behold here it is. I thought I was finished with that. I was pre-menapausal before and just knew I wouldn't have anymore periods. I was hoping that would be one good side effect of all this. Oh well, this too shall pass.
Thanks to everyone for the nice anniversary wishes. It wasn't much of an anniversary, me asleep in the recliner and he working in the yard. We plan on celebrating next weekend by taking a trip to Atlanta and watching the Braves beat the Mets. I kinda snapped at hubby last night, he said he didn't understand why it was taking me longer to get over the SE of chemo this time and I told him that I would put some draino in his coffee for a few days and see how long it took him to get over the SE's. Those steroids really make us mean, don't they.
I gotta go make a grocery list (with my chemo brain, wouldn't dare go without one) and go get groceries. Catch ya later.
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Hi Everyone,
Seems like everyone is progressing through this journey with strength and courage. Whether you're having minimum SE's or experiencing more, it seems as if everyone is figuring out what works for them, whether it's meds, or sleep, or "liquid courage"! Just wanted to point that out to everyone. You all are doing fabulously!
INDOMITABLE: Did you have reconstruction after your double mastectomy? I am looking into my options for surgery (I am having chemo before surgery) and it seems as if my choices are implants or a DIEP flap. Just wondering about your experience.
Janet
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Good Afternoonto all of you.
Taj-I take Claratin/Alieve on the day of my shot and two days after. It does seem to help.
Well I've gone in 4x to get my TE filled. I agree they are filling out everywhere but where they should be. Not the most comfortable things. I've got 400cc in each and still have the folds sticking out on the sides. The down side is that I was told that I will have them in for a year after my last RAD. (last rad will probably be in late Sept.) Dr. said that my skin will have to heal for a year before he takes out the TE and puts in my implants. I didn't know it would take that long. UGH!!
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This crazy cancer journey is so bizarre. Some of you may remember that I am the dumb bunny who scheduled a pap smear for the day after my first AC. LOL Anyway, it has been almost a month and I never heard anything. Kind of forgot about it actually. Today in the mail, I get a letter from my PCP. As soon as I opened it, I realized it was about the pap smear. I could hardly breathe until I scanned down the page and saw the words, "Normal. No evidence of cancer." Geeze. I cried. Guess it will always be like that now.
On that note, I booked a condo on the Texas coast for the good weekend after my last AC and before my first Taxol. Also made some camping reservations for once I start Taxol and should hopefully feel better since everyone says Taxol is easier. Knock on wood. Taking my life back!
Hugs to all!
Mary
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Becky, I was wondering if you still had soreness in your lympnode area.Mine is still bothering me have a little lump that hurts in that area.What did your Dr. say it was? I'm wondering if it is fluid building up.Hello to all,just stopped in to read the posts,hope you are all doing well.Take care,Julie
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YEAH FOR YOU MARY!!!!
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Jab1252- Good luck on your 3rd chemo this monday, hope every thing goes real good and smoothe, I dont feel like drinking till about two weeks after my last chemo, its only been 4 days but right now a mudslide sounds kinda good ha!
Taj72-Wow your mom is really going thru alot right now and so many chemos so close together too, i was told to start taking the claritan and or aleve before the pain starts like about a day or so before and just keep taking it a couple of days after to, with her getting so many shots and chemos i hope this helps her
Jaelsne-So great you didnt have to have the transfusion this week lets keep our fingers crossed,I know the head rush you are talking about, its weird, and i feel like im in a time warp, while im sleeping i look at the clock and think i have slept an hour or so more and its only a minute later, too weird, since i didnt have to have the neulasta shot this last tuesday i dont have the bone pain, hope my counts are good when i go in tuesday, but i can almost put up with this as long as i dont have that dreaded bone pain any more, have you had that with your shot?
Have a great weekend
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Hi Debbie,
About bone pain: I don't really have any pain in my limbs, but I do get a stiff neck and shoulder pain. I asked my doc if that came from the chemo going to my lymph nodes, but he said it was most likely from the shot. I'm going to try the claritin/aleve idea next time.
Also, Debbie, I lived in Owensboro for a couple of years (quite some time ago!). I've visited Paducah a few times to shop... It's a beautiful part of the country.
Jo Anne
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Hi May Marvels
Just thought I'd let you know that this time round I dropped taking the drug Dexamethasone , a corticiosteroid, as it made me feel like the energised bunny with no battery last time round. Pleased too report that the only SE was a slight feeling of nausea. I am also triple negative and found that website and chat room really depressing so now avoid it. My attiude is the same as Texas Rose and Deb .
I managed to walk and play 18 holes of golf on Day 5 after 2nd chemo and still felt good when I finished. We are experiencing glorious winter weather, sunny and a brisk 14 degrees Centigrade so it is wonderful to be outside. Tomorrow is the 21st June, our shortest day and your longest. May it be a turning point for all of us as well.
Pink bubble hugs to all. Susie
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Mary-I think you have a great attitude! I believe positive energy is half of the battle and you’re clearly winning that fight! Thanks for the Neupogen shot advice!
Ms.Pig-Thanks for the advice on the Claritan/Aleve. I will suggest that my mom start taking the combo tomorrow when she starts her neupogen shots. Hope it helps her too. P.S. I noticed you’re in Goodyear. I am also in AZ (Scottsdale) and my mom is in Tucson being treated through the UMC Cancer Center. So I definitely understand your comments about the heat and wigs, although it hasn’t been that bad this June. ;-)
Debbie6122-Thanks for the advice. You and Ms. Pig suggested the Claritan/Aleve. So I’m definitely going to encourage my mom to try it. Willing to try anything that helps.
Hemen-Thanks for the support and encouragement on the Neupogen shots.
LRM216-Thanks for your comments. Unfortunately, my mom did go febrile neutropenic. She has been fighting an infection and high fever since yesterday and finally was admitted to the hospital tonight for antibiotic treatment. I am still waiting to learn the lab test and blood results. I don’t know how long she will be I the hospital but I am hoping that she will begin to get better soon since she is supposed to begin neupogen shots tomorrow. Did you do neupogen or Neulasta shots? If so, did they help you to get better faster? How quickly did your WBC count jump up once you began shots? Thanks for sharing your experiences. -
Mary-I think you have a great attitude! I believe positive energy is half of the battle and you’re clearly winning that fight! Thanks for the Neupogen shot advice!
Ms.Pig-Thanks for the advice on the Claritan/Aleve. I will suggest that my mom start taking the combo tomorrow when she starts her neupogen shots. Hope it helps her too. P.S. I noticed you’re in Goodyear. I am also in AZ (Scottsdale) and my mom is in Tucson being treated through the UMC Cancer Center. So I definitely understand your comments about the heat and wigs, although it hasn’t been that bad this June. ;-)
Debbie6122-Thanks for the advice. You and Ms. Pig suggested the Claritan/Aleve. So I’m definitely going to encourage my mom to try it. Willing to try anything that helps.
Hemen-Thanks for the support and encouragement on the Neupogen shots.
LRM216-Thanks for your comments. Unfortunately, my mom did go febrile neutropenic. She has been fighting an infection and high fever since yesterday and finally was admitted to the hospital tonight for antibiotic treatment. I am still waiting to learn the lab test and blood results. I don’t know how long she will be I the hospital but I am hoping that she will begin to get better soon since she is supposed to begin neupogen shots tomorrow. Did you do neupogen or Neulasta shots? If so, did they help you to get better faster? How quickly did your WBC count jump up once you began shots? Thanks for sharing your experiences. -
Becky- How are you feeling? I hope all is well.
Geri- I'm working on cleaning up the camper! Summer is getting away from me here and I want to do some camping. Although we usually do most of ours in the fall. Too darned hot in the summer here!!
Deb- Drano. That's funny!
Titch- Hi!
Janet- Hi!
MsPig- A year for the expanders? Yuck!
Debbie- Ready for Tuesday? I'm trying to get ready. I don't worry as much about my blood counts as I do my blood pressure. The drugs are making it high and I have been in danger of not getting the chemo because it's too high. I start Xanax on Monday afternoons to get me really calm. Which means I lose most of Monday and Tuesday on treatment week. Ugh.
Jo Anne- My bone pain was pretty minor, but the Claritan/Aleve thing did help. Hope it works for you!
Susie- 18 holes of golf on day 5?! You are either crazy or my hero!!!
taj- I believe positive energy is HUGE!!! Sending lots of positive thoughts to your mom.
Happy Daddy Day to all! My wonderful dad has been gone for 15 years and I miss him so much.
Have a great Sunday ladies!
Mary
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I forgot to ask- does this thread disappear sometimes for everybody else? Sometimes I just flat out can't find it unless I go to it through My Favorite Threads. Weird.
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Gmp300- This is my whininy voice saying " I dont wanna wake up i wanna stay in bed and feel sorry for my self all day" LOL!
Jaeslne- Im glad you didnt have the severe bone pain, dont know why some get it and some dont, i read that some one said if your thin and tall its worse, but my onc said its the smaller people, im just under 5"4 and not heavey and not thin so im really not sure why. I love paducah, me and DH and only been here for 3 years it is so beautiful and we have met some great people, but nothing like hawaii or oregon where i have lived before
Suzee- wow you are my hero, i cant hardly get out of bed on some days and your out playing a freaking round of golf- you go girl Aslo, i took more steroids this time around than last time and it just makes you feel moody and angry and hungry all the time and the neausea was just as bad so i think next time i wont take as many, good idea suzeee
Taj72- Just wanted to say that even tho the claritan may help nothing really helped like the pain pills so if your moms pain is bad i would suggest the pain pills over the claritan- also wanted to say that my dd was also dx with b/c 3 years ago, she WAS a triple neg and she was stage 3 grade 3 6cm and happy to report she is doing so good and living a happy healthy life with her dh and 2 beautiful young children, Your mom is in my thoughts every day
Deb- Too funny!! Love that!! Our dh's try but they still dont have a clue do they?? When my dd was dx 3 years ago i stayed with her during tx in ct and i didnt have acces to a computer, i didnt have the slightest idea what she was going thru, i thought at the time i did, but now that im going thru this and have all kinds of info on bc and realize i didnt really know how she felt, wish i would of known more than so i could of been more help to her
Titch- and janet- Hi i hope you are both doing good
TexasRose- you are so positive and you make me smile
my eyes hurt so im wearing the sunglasses ha! AWWWWW im sorry about your daddy, mine jsut got out of hospital last week with a heart operation and i dont know what i would do with out him, camping!!! we should all go, geri can get the camper ready for all of us may marvels and we can meet in michigan and play keno! hense the word we sat keno brain! ha- And yes, i thought it was keno brain that the threads were disappering but you may be on to somthing lol -
Hi May Marvels
There is a lady called Lisa who has taught and is teaching Zumba during her treatment.I think she is in the April group. She was my motivator. A game of golf is a walk in the park compared to zumba but thank you Deb & Mary for your kind compliments. It is now 7.15 am Monday morning, freezing cold, and I don't want to get out of bed to go to work!!!!
Have a wonderful day everyone.
Hugs Susie
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My mom was discharged from the hospital and allowed to go home today. She started her neupogen shots and her onc is confident that she'll be ok to restart chemo on Thursday. We'll have some results then from her ultrasound and lab work to see if the tumor has shrunk any and if the chemo is being effective. Keep fingers crossed. Thanks for all your positive thoughts and prayers. Hope all of you are having a good Father's Day and have an easy week. This chemo train is a bit of bumpy ride at times, isn't it?
Debbie6122-Thanks for the inspiration! Glad to know there are 3b, triple negs out there that are survivors! I intend to add my mom to that group!
Mary-Have a great Sunday!
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Hi All... again I am only popping in.....
Round 3 for me is on Thursday......3 more sleeps
and the whole cycles starts again. I have got some leave next week and hubby and I have some time together in Christchurch,. i can't wait.Then I have one more session of chemo, . I am still not sure what happens next, I think surgery, then more chemo........ then radiation.
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Morning Ladies-
I am finally starting to feel human again after #3....this one was quite the 'beeeaatccchhh'. Sooooo flippin tired this time. But, only 1 left to go! WOOT WOOT! I am pretty sure a couple of you have #3 this week, and for me it was just as predicted, gets a little worse each time, so buck up and get ready. I have nothing fun to report which pretty much pisses me off because I want to have something fun going on. Well, a couple of fun little things coming up, going to WV to see my Mom over the coming weekend, taking my son and step daughters to see ZZ TOP & Aerosmith in an outdoor venue on the 1st and then a long well deserved trip to the lake with all of Skip's family over the 4th. My BFF from FL is coming on the 6th or 7th for my final tx, so all in all, I do have a lot going on! Chemo head........guess when I stop and think about it, there is plenty! Well, time to eat something and take my meds....great day to all!
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Hello MM's,
just coming out of the funk from round three and had to deal with A-fib again in spite of all the heart meds they put me on prior to my treatment. This is so frustrating. I'm trying to change my attitude about having to take even more toxic drugs during a time when chemo should be enough! I went to a woman that does "energy work" on day 2 and she helped me to "welcome all these drugs as allies to fight the battle rather than adding negative energy and slowing them down." So I did! As I swallowed each pill this past few days I gave each one a little pat on the back and sent them down the pipe, thanking them profusely for their sacrifice for my cause.......only to end up with my heart starting and stopping for three days, UGH!
This morning it seems to be beating like normal. The docs worry about clots forming and causing a stroke. I am trying to be calm about this but some days I just can't pull it off. I am going to a yoga retreat at a natural hot springs resort for three days before my next round on the 8th of July.
Titch and Zuzee, now you can look forward to the days growing longer! I am married to a kiwi and my mum-in-law called to let us know how darn cold it was as we enjoyed our longest day in this hemisphere.
I am grateful for a place to vent and hopeful for resolution, meanwhile the horses and donkeys are looking in the kitchen window wondering when I'll get off the computer and feed them! Ah, the simplicity of it all........................
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SUSIE: Wow, someone teaching ZUMBA! That is a motivator! I have tried to take walks on good days and I think that has helped. I would LOVE to return to Pilates class, but, to be honest, the thing that is holding me back is the BALD head! I don't know what to do, or how to cover it during class! I hate the idea of a scarf...been told by both fashion conscious teenage daughters that I look like a pirate, and I think my hat with hair, might fall off!
Anyone out there continuing to exercise...what do you do about the bald head?
Janet
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Janet,
just march that bald head of yours right into class! I've been going to yoga and pilates ever since I could move my arms, no bandana, no hat. Most of the class thinks it looks cool. You will be an inspiration to others in class, trust me on this!
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Hey Janet -- I went to my neighborhood workout room for the first time yesterday. I wore a beanie ... it was hot, but I figured it was better than showing off my bald head. And I went to the pool on Sat ... I wore a baseball cap in the pool. I'm sure that both times people were looking at me like what the heck? but I decided I didn't care ... I keep reading so much about execise helping with fatigue, and being a huge factor in preventing recurrance, that I don't care what other people think! This is all about me!!
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Hey Janet
I am still running during all of this - I am at my prechemo runs of 6 miles about 4 times a week except chemo weeks and I just wear a ball cap. I am also taking Yoga which is a little more tricky as I worry about the bald thing. I wear a bandana but can't really relax because I am afraid of it flipping off. The nice thing about Yoga - at least the class I am taking is that it is in the dark at least the lights are dimmed so if I were to flash everyone - they couldn't really see too much
. The excercise really has helped me with the SE. -
Titch-good luck on your next round thursday, and have a great time with your hubby, you deserve it girl!
Lovetheocean-Yipee on ONE more to go, i know what you mean about each one getting a littler harder, my chemo brain was deffeintly worse this time, and did not feel like getting out of bed for a few days, hope last one is way better!
Echosalvaje- You are truly an inspiration, as if you dont have enough to deal with, you have to worry about the toxins on your heart, you are in my thoughts and prayers- Wow!! donkeys??Makes me homesick for grants pass. oregon i had a donkey named charlie-
Mom2twins- thats how i feel, just bare it all and show the world we are not our hair, i dont give a dang what people may think im jsut trying to live life and and im not going to hide!! we are crazy sexy bald gals
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Hi Ladies,
I've been following all your posts. I wrote a really long one the other day addressing just about everyone and I lost it before I got it posted. I was so mad!!
I'm gaining weight everyday! I just can't believe it. Well, ok, I can believe it because I'm not being careful. However, I've never gained like this before. I'm at an all time record high! I guess I'll just worry about it when my treatment is over.
I was just about to burst into tears today. I have two gift cerficates for a massage at the same place in town. I thought today would be a good day to get one of them used. It's been raining here like forever and I'm going back to chemo next week (final one - yah!) I had to fill out a form about my medical history. The therapist came out and had some questions. She said I had to have a doctor's note for my implanted defibrillator (never have had to have a note for this and I've had several massages with this thing in me) and for the chemo. I called my doc in Boston for my defibrillator and they were stumped as to why they needed a note. They didn't have time to write on and email it right then (of course they were busy seeing patients) and I couldn't get to my oncologist's office - they were at lunch. I had to leave. I'll tell you I felt like a total reject, damaged goods. Like I was some alien that nobody wanted to touch. For the first time I really felt like a sick person. So, I guess I have to work on getting my notes so I can use those two gift certificates. I feel like asking for my money back.
Ok, there I vented. I feel better.
Love to all.
Sukiann
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