February 2012 Chemo
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MLB, I love it! a baby hat trick! In my head I have all three wearing tiny and adorable top hats. And congrats on passing the licensing test!Dipad, kick butt tomorrow! Just think, you'll be almost done with AC....Moonflower, I did do the Claritin for the Neulasta shot--I never had any bone pain so I assume it works. This new possible bone pain is from the Taxol, and for whatever reason they aren't recommending Claritin for that. Not sure why....0
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I'm a newbie here. Started chemo Feb. 6, with Cytoxan and Taxitere, steroids day before, day of, and day after, Neulasta 24 Hrs after first infusion. Went well until day 3, then nausea, diarrhea, dehydration. Twice in ER Sat AM & Sun PM, fluids, on 8th day at Onc's office they hung fluids for 7 hours. Onc decided I couldn't take the C&D. I was supposed to have four infusions, three weeks apart and would be finished April 10th, wait a month and begin 5X a day radiation for 4-6 weeks. It nearly wiped me out. I am not a young chick...age 72, but overall in pretty good health, other than being overweight. I have lost 18 pounds since surgery in January.
I began the new treatment on March 6th. I have Cytoxan Pills 1 thru 14th days of a 28 day cycle and Methrotexate & 5-FU on Day 1 & 8. Day 15-28, I have nothing. I will have this for 5 months. Rest a month and begin radiation. This treatment has been much better, but after feeling queasy all the time I asked the Onc on Day 8 for something for nausea. He said I should still have refills. I told him he had never given me any medications.....period. He looked at me like I was an idiot, and went to his computer. Then he just shook his head and handed me a RX for Zofran. Since that day I have spoken with serveral others who have taken similar treatments and they all say they were given something to take for nausea and a steriod during their treatments. I would like to hear comments about this issue. Would that have made a difference in my first round of chemo? Would I be through with it all in 3 more weeks?
At first I took the Zofran morning and night, but now I only take it when I get nauseated. I'm on my 21st day, and I can say for the past 3 days I have felt almost normal. The fatigue is still there, but nothing like before. Days 4-18 were pretty rough. The fatigue, diarrhea and cramps were bad. Had no appetite, just made myself eat and drink water. I begin my next cycle in one week, so I'm going to try to get as much done as I can this week. And the appetite is definitely back!
I began losing my hair on the 13th day of my first treatment in February, and that was also the day I began feeling better. Within a week I had lost so much hair, I went ahead and had my head shaved. I'm not comfortable being bald, and haven't even let my husband of 49 years see me. In the house I wear "do-rags" and scarves, but I purchased a nice wig at the hospital boutique and feel very good in it when I leave the house. They had to order my mixed-gray color, so I found one which will "do" for the meantime. I just put a scarf around it like a headband, and that worked fine. With this new treatment, supposedly I wouldn't lose my hair, so I'm hoping it will start coming back in soon.
A question: Is there anyway I can find posts I've made previously on other forums? I can't find that in the Help or Search lines. I posted most of this information Saturday, but I can't find it now.
Just tonight I found the Forum for Triple Negatives...which I am. That has alarmed me somewhat as my Onc. never really discussed that with me. The first words I noticed were "recurrence within 3 years." Since that I have done some research and I can only pray that I'm one of the lucky ones. The only thing he said was the first day (when he was still describing the first C&D treatment) "I think we can get you 8-10 years." I will add this question my list for next week.
I'm also taking Physical Therapy to try to get more motion in my left arm. I chose not to have any reconstruction and was fitted for a "foob" and I hate to wear the bra. I know I'm sounding negative, and I'm not a negative person. I suppose I feel I can share myself with you folks, because you're where I am. I have some wonderful friends and family, and they have all been so wonderful and supportive. I've had survivors reach out to me and wrap their arms around me, and that has been so wonderful. This journey has put some wonderful and generous people in my path. A retired priest who visits cancer patients five days a week and runs a support group shows up every single Friday afternoon to visit this Southern Baptist gal, and my husband and I look so forward to his visits.
Hope to get to know all of you better! Thanks.
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Hildy, this is my 8th week of Taxol and no bone pain. Haven't heard of that as an se of Taxol.
where do you people get your energy? i worked a few hours then slept rest of day. I'll do same tomorrow tomorrow. I've decided rest and not getting sick are my goal so don't risk them putting off chemo due to a cold, etc. my job is to get better and live. It's a hard job but somebody's gotta do it. :-)0 -
I haven't been on here for a while. Had a tough time after my 4th AC two weeks ago. Start my first of 12 weekly Taxols this Thursday.
I have about 5 or more pages of reading to do to catch up. Sorry I'm not very supportive lately. I hope to be back sooner and join in more often.
For now, I'm so tired I can barely keep my eyes open. I have a problem I need to ask about.
HEAD SORES: My head has little bumps on it. Reddish, bigger than pimples but not like a pimple. These just started in the past three days. Am I having an allergic reaction to the wigs? Remember, I buzzed all the hair off. I use a lint remover on the remaining stubble ...which is really hanging on. They feel irritating....kind of itchy. I feel like a toad-head!
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HI Merrinel
Welcome. I think all of us here on whatever chemo cocktail we have been prescribed were given steroids AND anti nausea medication. As much as the steroids make you feels wired, they definalty help with nausea and I also think to prevent a reaction. I don't know why you MO never gave you a prescription for the anti nausea though. Im not familiar with that combo but it sounds rough. I mean jeez the only time we end up being experts at this stuff is by going through it. Even though your chemo is now in pill form, you need to ask you MO about this. That is why this place is so informative. You'll learn alot here and will be better prepared to advocate for yourself. That likely goes double on the Triple Negative forum.
Regarding how you find your other posts. Go to "My Home", the Middle Tab at the top of this page. Also if you visit a thread alot, when you get there you can save it to your favourites so you wont have to hunt around as much.
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Second baby is delivered. Its been a busy day. both are boys, and everyone is doing well. So the hospital I work at has a new computer system, and I missed the orientation classes because of my BC treatments. They were pressing me for a time to come in and get trained, and I suggested they send someone from IT to tutor me during my chemo on thursday, and they agreed. Might as well make use of the time. Time for a few zzzs Hope everyone is doing well.
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hello ladies, I am on a NASBP b47 trial,ACT with herceptine , I start it in March 12. the first week was very nasty, after that every thing was OK. ( a had my first class of AC from 4, every 3 weeks)
that is. maybe on taxol will be better?
hava a nice day
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Merrinell, Welcome!You should have had some sort of anti-nausea IV meds prior to getting Cytoxan--my cocktail was Adriamycin/Cytoxan, which isn't the same, but they gave me both Aloxi and Emend in IV form before the chemo, as well as decadron by mouth. And I then took decadron twice a day and Ativan at night for three days post chemo infusion. I suspect that would have made a big difference for you. I'm also a bit surprised that you were having Neulasta on a three-week cycle--I thought that was something that happened only on the dose-dense two week cycle, but then again I don't really know what I'm talking about.
Gritgirl, maybe it's because you are going every week--that would knock the stuffing out of anybody I'd think. Have you had trouble with neuropathy or anything like that? I'm feeling great today--so nice not to have the steroids, antinausea meds, etc--but hear that killer wave of fatigue should sweep in shortly...0 -
Merrinell: welcome!
i would think that not having any anti-nausea meds would have definitely contributed to your not being able to handle the first cocktail....
and i also would wonder if i might be looking for a different onc from what you are saying. just my opinion.
today was my neulasta #4 and a wonderful brunch with my daughter in law. drug store and post office and now i think i am going to go read. my computer is acting up again and not opening pages when i look at stuff so i am just walking away-punish the computer? doesn't work that way!
sunny and chilly here-
hoping you all have a good day! hugs!
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Hi everyone, spent most of day looking at cars my hubby wanted to buy so I was shattered when we got home. He told me to sit in the garden and he would make dinner. Now we had been out all day and not eaten and I slept on way home. Two hours later I go in and say where is dinner? He had decided to open a bottle of wine and do research on bloody cars.
I lost it big time, told him he was selfish and always thinking of himself and starting crying.
My poor kids come in so worried about me and I end up making dinner. My hubby told me to pull myself together and has not spoken to me since. He didn't eat my dinner he got a take away.
I'm not my best at the moment and finding things really hard to cope with.0 -
Yikes, Ali. Sounds like your hubby doesn't get it. I've been told to tell people how tired i am, that folks don't get it. Many just assume I'm like regular. This stuff sucks, that's for sure.
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Ali, I feel your pain. Lots of that is happening around our house. My DH is wonderful, but his next meal cooked is his first in the 49 years we've been married. I don't know what we would have done since my surgery in January if my friends and family hadn't brought us in meals. My daughter lives two hours away, and has a family and a job. She would love to be here to help, but it just can't happen. I'm feeling fine this week before I begin another Chemo cycle next week, so I'm trying to do some cooking. When I'm on the chemo, I just can't look at food. I have to make myself eat and get that water down. He will end up eating junk during those times if very kind people didn't look out for us.
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Welcome Merrinel! Damn right you should have gotten meds for nausea! My onc gave me Compazine and Zofran to take. I like the Compazine a little better, but both work well. I'm not comfortable being bald either. I almost always have something on my head. But yesterday I was having a hot flash and I was in the house alone so I took it off. Of course DH walks in and I totally forgot about it until he walked back out. He told me later, he does not care at all, it does not bother him...but it sure bothers me.
Flddreamer - Sorry about the headsores. I haven't had that SE (so far, anyway). Hope they go away soon. Sorry you had such a tough time with the AC. It sounds like a really rough treatment, at least compared to the TCH I'm getting.
firstcall - rest up!
jazzy12 - welcome!
lumpynme - hope your computer gets sorted out. Brunch sounds nice...haven't done a brunch in ages.
ali - no offense but dumb move on your husband. Seriously I could not go that long without eating. Husbands can be so single-minded at times. I'm trying to carry around small snacks in my desk and purse just in case I get hungry all of a sudden. Sometimes when I start to feel nauseaous, if I eat I feel better.
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Oh and OMG who turned the heat up!?! I'm on day #2 after TCH #3 and I've gone from 1-2 mild hot flashes per night to multiple all day today. Again, relatively mild, I'm not pouring sweat or anything, but wow! Hoping it's just temporary? A test of what the tamoxifen will bring? Ugh... I'm too young for this!
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I did some research tonight and discovered that Taxitere and Docetaxol are the same med. Who knew? Haven't had any hot flashes or night sweats. Think it's because I'm 72 years old?
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Hey what is everyone drinking? Water is unbearable unless it's ice cold, and even then it's only tolerable. Drinking a juice smoothy in the morning. Drinking a lot of unsweetened ice tea at work. Tried ginger ale but it's too sweet to drink too much. Any suggestions? Something with a little bit of flavor but not overly sweet. I don't want to get dehydrated again like after last treatment.
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Merrinell - could be an advantage of age! enjoy it!
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Christina
I enjoy a cup of hot cocoa. The plain kind that you add your own sugar too and as much cocoa for that matter.
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Sobe zero calorie water
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yesterday i finished my DD A/C
today i discovered a new SE ....hmmmm...the handout my MO's nurse gave me during chemo 101 shows it as a "less serious SE to report to doctor on next visit"--which was yesterday!!!
so my fingernails have grown wonderfully strong,long and the ends seem very white-we have figured it was due to the neulasta- i'll accept that!
today i noticed that the nail beds are growing in kinda light purple --this seems to be from the Cytoxan....nothing hurts- just look like i had smashed the finger or something! but very lightly discolored....sure hope this doesn't become a problem! i know that it CAN be a problem when i start (what i think i will have next after surgery) Taxol.
is anyone else noticing this?
somewhere ppl are talking about tea tree oil?
margo
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Christina - when my taste is off I drink Lipton diet citrus green tea, you can buy it in big jugs or 8 pack bottles,it seems to taste the best during that time. Otherwise I usually like diet Sierra Mist but it doesn't taste good right after the chemo.
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Christina,I drink water, but I put a slice of lemon in and squish it up, it seems to take the flat taste out.Lumpynme, Yes, I have that side effect with the purple fingernail beds, and having gone straight from AC to Taxol, it's a problem. Both of my index finger and thumb nail in particular feel bruised and sore, and I'm worried about losing them. I bet your break for surgery will be a huge help in that regard.Okay, gritgirl, I hear where you are coming from on the Taxol fatigue. Definitely feeling tired. On the other hand, it could be that I'm used to feeling full of steroid energy at this point in the chemo cycle. Something to get used to.So I walked by my wig on its stand this morning and noticed that somebody had put a little pair of devil's horns (from a Halloween costume) on the wig. I love my family.0
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Christina- I drink unsweeteened tea as well. I can drink that a lot - works for me. everything else is too sweet. I tried crystal light, ubt it was too sweet. I have to force myself to drink Gatorade so I stay hydrated, ans I don't want to be hospitalized again. The extreme Mango is bearable.
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Lumpynme
When I was at the LGFB class last week one of the ladies was on A/C and her nails were as you describe. I think some get it from TC as well. Mine are OK but more brittle, just have them clipped short but I'm also icing during T.
I have #3 this Friday. Just ordered all my drug refills. My BFF is coming with me so I'm looking forward to her company. Now have to clean the house! DH has finally completed all of the sanding in the basement so the house is like a dustbowl!! At least this puts me one more closer to the finish line. Can't freakin wait!!!
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Flddreamer- sorry to hear you had a rough time. But congrats you finished your last treatment. Will you be doing Taxol bi-weekly? One more AC and I'm on to Taxol.
Merrinell- Welcome aboard. I'm on a different chemo than you but you sould have had some form of anti- nausau meds. After my treatment I take Emend for 3 days and steroids for three days for the nausau. After that I also have Compazine and Zofran in my goody bag. If you feel sick speak up loud and clear to your doctor. Hope you feel better soon.
Christina- I just finished AC#3 yesterday. I too have increased hot flashes but I think it's from the steroids. I would rather feel the fatigue than lack of sleep, hot flashes and racing heart. As for the water, I'm not a big water drinker so I also add fresh lemon to my water.
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Hi, I now know what i have, Neuropathy ( look on side effects ) I do have the right meds now but I'm still in a lot of pain. My hands are very bad they are swollen to twice the size and very red. They feel like you have burnt them and the finger tips are very sore when doing up buttons or open a packet of biscuits. I have asked my onco to call me and I will say to her to reduce the dose because I'm very worried about next time. I have read it can be long term and the more treatment I have the worse it will get. That's why I was getting shooting pains in my legs and pain in my jaw.
I'm thinking of taking Lymphospheric vitamin C as it gives you energy, also know two Cancer patients who swear by it.0 -
Ali, for neuropathy my doctor and onco nurse both suggested taking 200 mg of vitamin b6 a day. That has helped. I also see a chiropractor to deal with this side effect and that's helping as well. Sheesh. You sure have been whacked with the side effects.
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Thanks Hun will try that I'm so fed up with feeling pain and feeling down. Getting a bit worried I might be a bit depressed as I can't stop crying and I told my hubby this morning I would be happy not to wake up again. I'm so worried and frightened about having more chemo I could say now I don't care if I stopped now. I have read some chemo can make you depressed maybe I will tell my onco and see what she says.
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Ali
You have had a real hard time with the SE's for sure. Mabey an antipressant is in order, glad your're going to talk to the ONC about it. How many more TX's do you have scheduled?
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Hi everyone, last FEC yesterday, start taxotere in 3 weeks yay.
In Australia we get told to use a nail hardener and paint our finger and toe nails with black or really dark nail polish during taxotere, apparantly the light affects them and can make them change colour and/or fall off.
I can only drink bottled water, can't stand the taste of tap water. x
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