August 2011 chemo, anyone w/ me?!
Comments
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Ukgirl, I just had #4 on tues. Just waiting for the worst fatigue. Usually after 4, it hits. My mouth also tastes horrible, I have drank well but haven't eaten much today. Mouth is just awful! Hot flashes are awful as well.
I made some chicken and rice, gonna try to eat it. Love rice!
Hope everyone has minimal se.
((((Hiugs))))
Jenn -
DebinUtah - They do say that the AC ("red devil") is the worst, but since I'm currently getting it and then reading about my fellow sisters with the Taxotere, I'm not so sure. I haven't had any terrible aches and pains with the AC at all. Just fatigue. I think it would be safe to say that they are BOTH horrible, LOL.
VTellen - I say that you still tie the knot as planned and stop in and see me when you're in Maine. I'm in Portland :-) And congratulations, by the way!!!
Jenn - Sounds like you are hanging in, I'm sorry about your mouth and hot flashes. I am a week out from AC #3 and most things still taste like poo. Especially water but I FORCE myself to drink it!
Vivie - I hope that you start to feel better soon, I am sorry! And count me in on a trip. When all this shit is done, I am going to start to do everything that I want to do. Screw the finances, they aren't worth worrying about anymore!!! LOL
UKgirl - I think you and I are practically on the same schedule. I had AC #3 last Thursday. I am getting 8 total treatments, one more AC and then 4 Taxol, you??
LOVE YOU ALL! Hang in! I'm sorry if I'm forgetting anyone, I don't want you to think I'm ignoring posts. I read them all and think of you all every day!!! -
Ah thanks Kasi and everyone for the congrats. We are waiting till spring. I would like to feel well and be able to toast w/ a glass of nice wine (and actually taste it!) at least. We held off cancelling the week end trip to the last minute, though. I would LOVE to see the ocean, but w/ the low wbc, going out to eat, etc would be risky I think.
So, how do they determine who gets T/C and who gets A/C? I can't really see a pattern, but there must be one? And why only 4 T/C, but more of the A/C? And while I'm at it, what's the DD versus 3 weeks? I feel weird that I just accepted what chemo I was told I would have, and didn't ask why?
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Vtellen - Promise you'll stop and meet up with me for a few minutes when you do come here, ok?? And good question about how they determine who gets what chemo. My initial HER2 test was equivocal so there was talk that if I was HER2 positive, I would be getting 6 rounds of TCH every three weeks, But when the FISH test came back HER2 negative, it was AC and Taxol. They said that I was going to be treated really aggressively so that's a really aggessive regimen? No clue. I see that some women who are triple negative get the same chemo regimen as me so that's what makes me think it's a really aggressive treatment since TN is considered a very aggressive cancer...? Honestly, no clue. I am probably being over treated but I am fine with that. I have many, many years of living left to do.
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Hi girls!
I've been reading every day but not so much a writer, but I'm thinking of all of you all the time and so glad we ave this wonderful group!
Day 2 for me after the second AC. They changed my anti-nausea meds and it's working! Nothing comparing to the last tx. I've been able to eat and drink and even went for a walk today! Thinking about going to work tomorrow, but will see how I feel in the morning...
regarding AC vs. TC I was told that AC is very aggressive and always considered for the pre-meno ladies as it hits cancer's ass the hardest. fine with me as I really want to be around for years.
Wishing everybody as minimal SE as possible and we WILL get through this together!
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Robo47, Looks like we are on the same TX Taxotore , Cytoxoin x 6 treatments followed by 5 yrs of tamoifen , I found round 1 to be ok just had round 2 yesterday and so far so good no SE's but I get my yukky days around 4-7, never got the weird taste in my mouth at all so far ,about the hair thing I was dreading this the most of all as you probably saw from my previous posts but after shaving my head I feel fine it doesnt bother me know I kinda like it in a weird way and know its only temporary you will be fine ,xx
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Oh, so you guys are on 6 and Chrys, Robyn and I are on 4 rounds. Hmnn. And then there is the lumpectomy vs masc. Seems that if the tumor is over 2cm, everyone gets a mastectomy? Then you don't get radiation after. I wonder if the dose is different if you do 4 and not 6?
robo47- I still have something in the way of hair. This morning when I got out of bed, I reminded myself of a wonka. It keeps thinning, but so far, at least it covers my head, sorta. Kinda. If I push the clumps around just so! Ha!
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Kasi- I will def look you up. We usually get to Me. once a year at least. We go to York, short Sands, because I think it's cute and we can buzz into Portsmouth. I love swimming in the ocean and Brown's ice cream stand.
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vtEllen and robo47 and others: Definitely hard to follow these regimines and understand why we all get different combos, even knowing how different all our cancers are. I just had round #3 of AC yesterday and am feeing so-so at this point. I know from the last rounds that it's about day 4-5 that I feel worst, after the tapering dexameth stuff wears off.
I'm triple positive, so after these 4 AC rounds I move to 4 rounds of Taxotere (1 every 3 weeks). I would have had 12 rounds of weekly Taxol instead, but they're out of it here in my central New York hospital. And along with the Taxotere I'll begin my 1-yrs-worth of Herceptin. My tumor was only 2.7 cm, but being relatively young (45) AND BRCA+ means I've been put on the agressive track of things, I think.
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Good Morning Everyone
Summergirl..that is very sweet of your sister!! I'm glad your doing good about your hair situation that gives me hope..Its been 10 days since my first tx and I go tues for tx#2 and so far I still have my hair but I know not for long..It scares me that my hair will be falling out and everyone will then know that I have "C"..I just don't want anyone's pity just treat me the same!
I always thought that A/C was the milder one and that Taxol was the stronger one. Some of you guys are lucky, I have 8 tx in total...ughhh.
Have any of you changed your diets?? I heard if your ER+ then you should stay away from soy products?? You should stay away from sugar etc..ughhh I havent changed my diet ..I love sugar, junk food but I'm wondering if it would help to change the way we eat?? I dont know..I'm still wondering how I got this...
I hope you all have a great S/E free weekend!
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Taylor- my onco. nutritionist said no isolated soy protein. It is in veggie burgers, some granola bars, etc. Soy lecthin, which is in most everything, is ok, I guess. I have been craving sugar, and sweet stuff tastes better to me most of the time, now. Onco told me to go to town on food and sweets. I have never been a junk food eater. We make all meals from scratch w/ fresh , local stuff usually. Live on a dirt road in the country. I thought that I was super healthy - before......
I think the hair thing is a big effing drag. Because not only do other people see you as "cancer person!!" but, you also see yourself that way everytime you look in the mirror.
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Robo47- the last couple of days I have been having really bad back pain and I'm thinking its from my period thats trying to come and my body trying to fight it, the pain was really bad. Are we supposed to get a period when were on chemo?? Thanks I'm going to buy that book.
Ellen-I'm thinking about taking the mirror out of my bathroom and bedroom bec. I do not want to see myself everyday..I really dont think I'm going to handle this well!
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Kasi - We are on the same regime. My final dose of chemo is Nov 9th so am hoping tp feel better by thanksgiving. I also had a BMX and I dont know about you but I still have some pain in my back and sides. Also I dont feel as if I can put my arms down straight by my sides. Have you tried wearing prosthesis yet? I have worn them but not for hours at a time as they start to feel heavy.
jbagley- how was the chicken and rice? Hope you kept it down.
Regarding what treatment is given there is a national website that dictates which drugs/treatment is given which is the NCCN clinical practice guidelines in oncology. My oncologist used this website and was able to put in all my data and give me a survival rate with/without chemo and print it off. Hope this helps.( sorry couldnt attach the website )
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robo47- a wonka from Willie Wonka! That is just what struck me when i looked in the mirror! You know, the little guard men- oh well. I will have my 3rd of 4 on sept 19th, assuming my blood rebounds again. So, I'm 1/2 way there!
Taylor- you will probably be like summergirl and look interesting bald! Or even attractive!
Whoa- fingernails hurting a little w/ typing. ohoh.
Robyn- please post! Last time you posted you were heading in because of suspected blood clots! I keep checking in here for news about you!
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Taylor77- I specifically asked my onc about soy products and he showed me a study from China with over 5000 women in it that showed that the more soy that they ate the less chance of canc and those with cancer had less reoocurance. In fact the ones with the hightsest consumption of soy protein had the same reoccurrence as those on tomoxifim. If they didn't eat the highest level then tomoxifn prevented more reoccurrence. My onc said that the estrogen in soy in a dish will make cancr grow but in a human it is much lower level so it blocks natural estrogen which is much stronger so it helps prevent cancr growth. Re: sugar--big no no!! I know that it is hard cancer loves sugar (even more than you do). Think about a pet scan they give you glucose AKA sugar and it runs to the cancer cells and makes them glow. Sugar feeds the cancer. The biggest changes I have made which is supported by lots of research is to have 10 servings of fruits and veggies each day. If we are eating that much it is hard to have room for junk!!! Good luck to all.
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Hi everyone - I haven't written much, but have been following the board for a few weeks. So helpful to have a virtual support group! I go in for AC #3 (of 4) on Tuesday, and then will do weekly taxol x 12 (I guess is available - I'll have to ask my onc about that). My worst SE by far has been nausea - I'm dreading losing another week of my life to it next week! But I keep telling myself I'm halfway through the worst of it. Does anyone know if nausea is ever a SE of taxol? I'm freaking out a bit because my 2-year old came down with a stomach bug this morning, and even though I'm trying to be really careful I almost certainly have been exposed to her bug. Any tips on ways to boost my immune system would be greatly appreciated! Wishing everyone best wishes with their treatment.
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Thanks Chava- thats interesting about soy.
Istreet-I just had 1 A/C tx and nausea wasnt bad at all. They gave me emend and some other anti nausea pills and those seem to be working. Did they give you anything for your nausea?
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Istreet- acupuncture is supose to help your immune system. I been going since I have been diagnosed. After my chemo treatment the points that help my immune system are veery weak and need strengthening. I had my third a/c yesterday and some of the spots that I have never felt anything when he did thm before hurt this am. The othr thing that builds your immune system is lots of fruits and veggies. My daughter also has a cold and I have been taking something called sumbical tom help keep my immune system up. Good Luck avoiding the cold.
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ukgirl - yep, we are on the same regime, almost down to the day. My last one is Nov 10th. Cannot get here soon enough!
vtellen - Ooh, I'll have to meet you down in York. I don't get down there often enough
For y'all with the back pain, I got it too but mild - felt like period cramps. I think it's from the Neulasta. If you guys are getting Neulasta I would guess that would the culprit.
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Taylor. My seventeen Yr old son is a trainee hairdresser and always does my hair , so on day 14 and 15 when I brushed my hair and I ended with a pile of hair beside me I decided I could not bare to watch it all fall out (way too traumatic) I wanted to take control of it and not let cancer do it for me so I came home from work on day 15 and had my son, my sister and husband with me as my son buzzed it down to a 1 blade just a very slight coverage of hair they all loved it and told me I had a great head and that it really made my features stand out I have hidden behind my long hair all my life (HAHA) my hubbie shaved his too so we had a good laugh comparing heads, YOU will be fine I dreaded this part SO much and cannot beleive how I got through it , you have such a beautiful face you will look great and its only temporary, I truly think if you take control of it yourself and making it a fun experience it will really help you deal with it and you might surprise yourself and like it too. GOOD LUCK and dont be scared just one more hurdle to pass , and soon we have gotten over them all and will be on the other side. (hugs)
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I had back pain, as well. I'm not getting neulesta. I figured it was the ovaries taking a hit? My pain was right around there.
Kasi- we could go to the Portsmouth Brewery or Brown's or both. Now I'm wishing that we were still headed up there this weekend! The real problem is that it is very hard to leave my barnyard full of animals!
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Hi Everyone - Just had A/C #2 on Wednesday and am feeling ok except for this horrible headache. Extra Strenght tylenol isn't touching it and last time the vicodin didn't help either. Any other suggestions?
On a different note, I picked up some ginger chews from trader joes. Someone at chemo had left a bag out for people to try the other day and though I am not a huge fan of ginger, I have been eating those instead of taking the compazine this time around. I was hoping that not taking the compazine might help with the headaches, but no such luck.
Hair will be buzzed off tomorrow. Yesterday I pulled out a handful in the shower and now multiple strands are coming out all the time. So, time for the plunge! The worst part of it will be going to work on Monday.
The pandora bracelet idea is beautiful! I am spending time with my sisters tonight and may drop the hint! :-)
Wishing all of you minimal s/e's this weekend and dry weather. It has been raining for the past 3 days here in the midwest, so I am sure you east coasters are getting it as well. The sun is finally out now, so hopefully the weekend will be dry.
Hugs to all my August sisters!
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HERE I AM ELLEN!!!! Sorry! Thanks for your concern! Yippee, no blood clots!!!!! And the radiology nurse was able to access my port 2nd try for the CT scan contrast. Yippee again! I've sufferred mild asthma all my life, and evidently chemo doesn't improve asthma at all, so the symptoms are just kicking it up to add to my discomfort. And the port issues aren't helping the chest pains at all! I just don't have the energy, strength, breath, or whatever it is I need to keep myself going. I can't wait to feel like me again!
I am beginning to feel a little less queasy, but still pretty lethargic. Hoping to go out to dinner with hubby for his birthday next week. And drive my son to school. They sound like such simple goals, don't they?
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Hi lstreet - i've heard nausea is not a SE from taxol from my nurse, but not sure
Taylor - i've actually had my period twice while on A/C, and i've only been on it for 6 weeks!
I get my neulasta pains mainly in my shoulders, chest, back (upper area - bones and muscles)
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Thanks for the tips everyone! I am doing acupuncture, so hopefully that's helping my immune system - I had never done it before starting chemo. My doc has tried me on 5 or 6 different nausea meds, including emend, zofran, ativan, compazine, phenegran. Mostly not helping. Ugh. I had horrible morning sickness with my pregnancies - I think I'm just prone.
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Good question about the different regimens, vtEllen. I've been wondering that myself!
Kasi, you and I are on the same regimen. My ONC told me it was aggressive and she believes it's the right regimen for me since I'm triple negative. You're not triple negative, but your cancer is Grade 3 aggressive so that may be why you're getting 4 AC and 4 Taxol as well.
As for the 2 vs 3 weeks, my ONC told me that they're moving toward 2 week dose dense as the standard as research has shown it's more effective.
I also wonder about the 4 DD Taxol vs. 12 weekly Taxol. Why the difference?
As for the diet, they didn't tell me to avoid anything but I've heard all kinds of things from others: no coffee, no alcohol, no sugar. Wow, talk about taking all the pleasure out of life!
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Hi all. Well on I am day 4, thought I might miss the bad spell, but tonight it kinda hit me hard. My mom came up for the weekend to help out with my 3 yr old cause my husband works tomorrow. the neulasta makes may neck and skin really tingle and hurt.
Sorry, I am whining. Crying a lot......
Shakey and weird feeling. I love my mom so much. She has been a greeat help through this.
Love and Hugs,
jenn -
Thanks Summergirl I might just cut it even shorter but I dont know if I could buzz it off , I might just take some extra ativan and buzz it..I dont know Im scared!!! lol...I know this one will be the hardest..my head feels so dry and itchy ughhhh
Michelleo and Kasi- Were on the same 4 A/C and 4 Taxol..you guys are ahead of me I'm having my second tx on tues..I'm also grade 3.
Michelleo I dont live too far from you , I live in Windsor.
I'm so sorry Jenn that your not feeling good..cry and whine all you want your entitled...Arent moms the best
Thats great news Robyn!!!
Ellen and Kasi if I lived closer I'd be meeting up with you too
Good night everyone xo
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Hello ladies
Suffering from insomnia : ( Its been a while since I have been on here. Just went to a local support group meeting and found out I was the youngest one there. I felt like such a baby: P Well I am going to get my head shaved today since my 2nd treatment will be on Wed. My scalp is itching like crazy. So nervous. I told my daughter that she has to hold my hand because I might cry : P On 4xAC then 4xT Hope my SE go better this time especially the heartburn.
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Thank you, but I decided to get a PICC line It was fantastic. No pain, procedure was easy but for those who wiill get it be sure you requested for a doc. They assigned me to a nurse because they said it was easy and nurse could not find my vein I end up wd lots of bruises so they sent me to a doc and it was fast. no scars when they pull this out but I could not wet it and really to take good care of it. I just reciv my AC 9/9 and I dont feel any side effects. I wonder when those side effcts will kick in. Its just scary waiting for an unknown. When you guys lost your hair? I have a very long hair and I hate to see this go so I cut it and I will donate it. but I dont know when I will start shaving though.I sleep well last night and I dont feel the nausea. I drink alot to flush it out. I put fresh lemon in my water fron our backyard. well any advice from those whod been there will be appreciated.
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