Starting Chemo July 2012
Comments
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Rita, What an inspiting story. As a nurse, would love to read the journal article. You and your sister--what a team!
Thank you for sharing.
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I will continue my story. I have a very positive attitude in this nightmare of Doctors and tests and waiting on results. What I hate to hear from people "Oh Rita you are so lut cky to have caught this disease early"! My response is to them No! No one is lucky to have this disease no matter what stage they have, But I am fortunate to live in this day and age where they have better drugs to give you to help with the iron instead of iron infusion, or to have the shots available now to help with my blood. I look at my sisters battle and consider myself fortunate that they have the meds to help me. I took my 3rd chemo today with taxotere and cytoxsan and have one more to go. I had IDC stage 1 grade 2. Onco score of 35. Will have 6 weeks of radiation then put on chemo pill 5 years. Had lumpectomy left sentinol node biopsy 0/2. Sorry I have this long post bet you guys are glad I do not post to often. Hang in there every one. You will go along way if you keep positive, get some exercise, drink fluids, and get out and enjoy life on the good days. Always get dressed in the morning and live your life no matter what. We will all get through this together. Lots of prayers and hugs for everyone here. I do read your posts everyday.
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I will continue my story. I have a very positive attitude in this nightmare of Doctors and tests and waiting on results. What I hate to hear from people "Oh Rita you are so lut cky to have caught this disease early"! My response is to them No! No one is lucky to have this disease no matter what stage they have, But I am fortunate to live in this day and age where they have better drugs to give you to help with the iron instead of iron infusion, or to have the shots available now to help with my blood. I look at my sisters battle and consider myself fortunate that they have the meds to help me. I took my 3rd chemo today with taxotere and cytoxsan and have one more to go. I had IDC stage 1 grade 2. Onco score of 35. Will have 6 weeks of radiation then put on chemo pill 5 years. Had lumpectomy left sentinol node biopsy 0/2. Sorry I have this long post bet you guys are glad I do not post to often. Hang in there every one. You will go along way if you keep positive, get some exercise, drink fluids, and get out and enjoy life on the good days. Always get dressed in the morning and live your life no matter what. We will all get through this together. Lots of prayers and hugs for everyone here. I do read your posts everyday.
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Hey mamabr, you must be on dose dense regimen. I just learned what that means (every 2 weeks instead of every 3). Mine's not til next week. I wish I knew why the MO's pick the regimens so I wouldn't be questioning and trying to guess.
I finally found a website with some basic stretchy knit hats and ordered those. Also found ways to do scarf and buffs that will work. I guess I'm ready after all. Losing hair will be a small thing really. I already shortened it by 3 feet and right now don't plan on growing it back. I'm enjoying the super short cut.
Good luck tomorrow with your 2nd infusion.
P.S. if anyone wants to see a good scarf tying and buff wearing video (plus just a woman who looks gorgeous in both) check out this YouTube channel http://www.youtube.com/user/EyelineHerBlog
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CityFi - my eyes burn/water and I had a sore/mild bloody nose. The nose healed completely in about 2 weeks and artificial tears are reducing the eye symptoms. It's funny that eye drops help watery eyes, but I think the tears help flush things out. I think part of the problem was wearing my contacts during chemo which trapped the chemo that's excreted in the tears under the lenses.
sammy0345 I too had muscle pain on days 3/4 and then got a bowel infection on day 6 and I spent 3 days isolation in the hospital with severe diarrhea, vomiting and pain then 10 days in isolation at home. I went on clear liquids for a full week, then ensure/boost for a week and now I'm eating a low residue diet. I also am taking high doses of probiotics (VSL#3 - expensive but well reviewed in medical literature). The simple diet, antibiotics and probiotics have really helped and now I'm 4 weeks out from chemo and feeling good. I even went for an easy 45 minute hike this morning. If you'd like any info about a low residue diet, if you don't have it from the doctor, or the probiotics, let me know. I also have severe colitis which does make me more susceptible to bowel infections.
PAeagles - I'm with you there. I've had people ask how things went and when I say that I had a bit of rough go the first round, I'm told that I need to stay postive and not focus on the negative. It frustrates me - they're not listening. Yes - I'm positive. Yes - the prognosis is good and I'm doing the right thing, but that doesn't make it any easier and having someone let me vent and then move on helps.
Anyways, my white blood counts are 3.8 which is a slightly lower than the magic number of 4, but my oncologist gave me the go ahead to do chemo tomorrow rather than wait another week and make it 5 weeks between treatments. It's good to get it done, but I'm somewhat nervous with the tough time I had with round 1.
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6 days after 1st TAC treatment-feel a little loopy in the head, but been playing brain games and trying to engage to stay alert. Felt pretty crumby a few days ago, but no reversing. Very fatigued yesterday and day before, but today feeling 'dicsonnected', like head is discconnected-ugh. Resting when necesssary and appetite still ok. Tastebuds have changed a little, but I am making an effort to focus on nutrition. Suddently got constitipated (must have been my cheating with meatballs and pasta last night and slowdown of digestion from chemo). Strange cravings, too, like Cakebatter milkshakes.....hope everyone's getting through!
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hi everyone, sun is shining here in ireland. just compleated my 2round of tch yesterday, and gave mysely my neulasta inj so awaiting the boney pain tomorrow. i did ask the dr about the clarityn treatment to compat the se of the neulasta but he did not see how this would help think i will download the research for next consult.
got my head shaved last week as it was shedding and getting used to my skin head,it did help that the hairdresser said that woman with bald /shaved heads look beautiful as their eyes appear bigger and cheekbones appear. continue to wer wig outside but scarves indoors, if i am alone in house i will go topless(i dont know if that sounds decent) feeling more and more psoitive,i know i can endue the next few days if se kick in then hopefully 2 weeks of feeling good. i love this saying hope u all like it THINGS TODAY , MAY NOT BE GREAT BUT THEY ARE NOT BAD, AND THAT'S GOOD.
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Glad to hear you're doing well rosewillow.
I see MO today as my heart still feels wrong after the first AC. Not sure what to expect. Sure hope this is temporary stuff and she can switch me to another drug or convince me it's safe to continue this one.
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"My bags are packed, I'm ready to go..." Well, not really but I'd like to think I am. Chemo starts tomorrow and I am scared -- I have done everything I can possibly do to prepare for most of the SE's. I have done the reading about what to expect, which of course is different for each of us. I am anxious and my chest feels heavy plus I am hyperventilating a bit. I normally do this when I am stressed but I just read that some of the symptoms I am experiencing are also a sign of lung cancer. Ugh! I need to stop reading and take something to help me sleep! But, scared to do that with all of the liquid's I've taken in today, afraid I'll sleep so sound that I'll pee in bed!
Well, time to put my BGU (big girl undies) on for the BGC tomorrow --this time tomorrow my first treatment will be over, repeat, lather, rinse.
Good luck to everyone beginning their chemo treatments and also congratulations to those who are done -- I'll be joining you in abut 5 months.
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Hello ladies... I have been lurking around and reading up on your experiences. .. I have done with dose 2 of my dose dense AC.
The hair shedding andf taste changes have come in now. Even though I had buzzed down my hair last week.. I am shedding now and it just seems impossible. I am continually losing SO much hair... but there is more on my head.
How ARE you guys managing the constantly falling hair? How long does it take to reach fully bald?
And everything tastes the same.. thats is terrible. but better than having nausea I guess.
Ann, what is it that doesnt feel right with your heart? I felt the same to .. but I was kind of paranoid before starting AC... I have noticed an increased heart rate on some days for no reason. Anyone else also?
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Home from 2nd treatment. My blood work showed my liver markers had high "something or other", but they didn't have to cancel the treatment, just changed the concoction and started the drip. It's amazing how quickly you can feel the venom enter the body. Sorry, I guess I should call it the anti-venom. Feelings in my head and mouth changed quickly.
Everyone is so supportive. My friend took me to treatment today. She was surprised to see how many people were receiving treatments. There are probably 20 chairs and they were steadily filled. In a metro area, this may not be a large number. We live in a smaller city, so it hit home to see all the people battling. It's one thing to support friends dealing with this, but another to actually see people in treatment, the IVs, ports, beepers, nurses. And it's different then visiting a hospital because most people have been to a hospital, but not so many to a cancer treatment center. She was a great help and the time passed quickly.
My teens are enjoying the generous boundaries they get while mom and dad are preoccupied. There isn't the grand inquisition whenever they are going out and about. At this point, I just have to trust that they have good judgement.
Almost forgot, this morning my hair started coming out in fistfuls. I felt crummy at first, but my son put it in perspective that this is really the least of my worries considering everything else that has happened to us. Coming from him, I thought it was a sweet sentiment.
Anyways, best wishes to all! Thanks for the forum, it is therapeutic.
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Hi lilypad, good for you, you must be half done with AC now.
To your question-- I've had tightness in the chest, get winded more easily than normal, some heart pounding, chest pain from a brisk walk, and just lying in bed it feels like my heart is working harder than usual. It sounds like a lot but it's all pretty mild intensity and it comes and goes. Just when I think it's gone I'll get a few pounding beats again. My MO today said she thinks it's not serious and that if I had heart damage from the AC it would have started immediately, not several days later. But she's sending me to a cardiolgist to be sure. She doesn't plan on changing my chemo at this point. I'm concerned with all I learn about adriamycin and hoping the cardiologist can reassure me I haven't lost heart function. I don't like that MO told me this is unusual. I was hoping to hear it's common and temporary.
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PinkyWI - I just saw you are starting treatment tomorrow, I know, super scary. I don't really know how to control any side effects that may or may not happen, but fluids, fluids, fluids is all I can recommend. The more you can drink before 5-6pm, maybe you'll have less trips in the middle of the night. When you get to the office and they get you all ready, the nurses seem to be so at ease, that many worries seem to fade away. It's almost like being in a safe zone. You are being taken care of, everyone around you is on the same team and there aren't many decisions to make during this time. There is a certain element of peace. Best wishes
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Thanks mamabr, I appreciate the encouragement. I'll report how things go soon..
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Hi everyone-
It's been a while since I was around here. After my bmx on June 18th, I thought I was on track, but found out almost 3 weeks later that I needed an ALND. I had that done July 10th along with my port placement, but ended up in the ER on June 11 with an 80% pneumothorax and an 8.5 day hospital stay. My MO was anxious for me to start chemo ASAP, so I started 6 rounds (every 3 weeks) of TC this past tues, July 24th. So far, none of my SEs have been as bad as having a chest tube & week-long hospital stay.
. The day of, the cytoxan made my eyes burn a little & feel heavy & made me cold. The taxotere I didn't notice anything with. I was able to eat pizza in the chair & snack on some treats my friend brought. I had my neulasta shot yesterday, and I had been doing ok until mid afternoon when I got more fatigued & a bit edgy (likely from steroids). I was also really emotional last night & felt a bit out of control. The tears came easily without provocation almost. I have two young children & I think I was feeling pretty guilty for not being up to par for them. 
My mom has been here to help & she is leaving this afternoon. I hope I can do it by myself the next 2 days (days 4-5 are typically bad), so fingers crossed. I went to sleep early last night after my last steroid pill, a Zyrtec for the neulasta shot, a zofran for mild heartburn & an ativan to help me sleep. Slept well I made breakfast for the kids & managed to eat waffles myself. Taste buds still in tact. I have some lower back pain (likely neulasta, but also didn't have a bm yesterday). Overall, mild SEs from the TC. I'm still functioning at a good level. My husband is already tugging at my hair. He already shaved his in anticipation of my bald head. I'll be around here much more now. Hope everyone is hanging in there.
Hugs,
Tricia -
Hi Tricia. Mmmm... waffles! How sweet that your husband wants to be your bald head buddy. I hope you continue feeling well and functional. I had some slow days but no non-functional days on AC, and I think TC is supposed to be a bit easier. Wishing you well.
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Susan HG123- You feel free to come here and get it all off of your chest. What a JERK!! We can only hope that Karma will pay him a swift and severe visit sometime soon.
Rita 65- Thank you for posting that amazing outcome! Those are the types of stories that have kept me going through this nightmare.
I had my second round of T/C yesterday and it went even better than the first. Of course right now you could probably fry an egg on my face from the Decadron flush that I have, but this too shall pass.
As far as hair loss goes, I had mine shaved down to a stubbly cut on day 10. On day 12, I started losing hair down south and it ITCHED like crazy!! On day 17, my stubbles started itching like mad and I was able to pull the lil suckers out with my fingers so I went home and hubby and I shaved it bald. I had a little bit of fuzz grown in since then so last night I got the Bald Guyz gel and razor and attacked it once again. I even had a little bit of stubble on my legs after almost 3 weeks of no shaving. (Ahhh one of the thin silver linings of this garbage lol)
I found if I take the day of and day after treatment and get good rest, I'm good to go after that. I get a good round of pre-treatment meds before the Taxotere & Cytoxan are started... is that pretty much the norm for everyone else?
My MO did recommend the Claritin treatment for the aches and pains that follow the Neulasta shot, so I stopped and picked some up on my way home from treatment and started taking them right away. If nothing else, they are helping my allergies
As for the tastebuds.... What are they? I haven't had any for weeks! They were just starting to wake up again, but after round 2, they got knocked out. Yes, even water has a funny taste to it, so I've started drinking flavored waters. Right now Propel Zero Lemon is tasting pretty good. My nurse even said to try squeezing a lime or lemon wedge in you water to make it more palatable. Citrus does seem to be one of the things that is hanging in there for me, but sweet is SHOT. (Unless it's Hershey's teaberry icecream, THAT tastes amazing yet!)
Hope everyone is getting on well with their treatments with minimal SE's! -
Hello Everyone - I have been stalking the board for the last 3 weeks, and decided it is time to join in! As I set here getting my 2nd chemo treatment, decided to have a little fun, so I created this list:
Top 10 Advantages of a bald head and a wig......
1. No bad hair days for 21 weeks!
2. With the money I am saving on hair cuts and colors, I can buy a fabulous pair of designer shoes AND the matching handbag
3. It's the perfect time to experiment with lots of new haircuts when my hair grows back - the pixie cut I was too scared to try, the stylish Kris Kardashian cut, the sexy Lisa Rinna cut, the Meg Ryan shag, etc
4. I never have to worry about my hair frizzing in the fog or going flat on low humidity days
5. Don't have to worry about my hair getting in my lipstick on windy days
6. No need to spend money on expensive shampoos, conditioners or hair products
7. I cut 20 minutes out of my getting ready routine in the morning
8. I can remain in denial about how gray I am really getting because I can't see my hair
9. I can be a red head, a blond or a brunette any time I want to!
10. My husband can sleep with a red head, a blonde or a brunette anytime without cheating -
Itsalltemporary-I happened to be here when you posted and this put a well-needed smile on my face. Though I am in the 'recovery' phase of my 1st TAC treatment (I am 7 days out), the mental fuzziness and not looking forward to the 'Hair today, gone tomorrow' prospects are definitely starting to nip at me hard. I love the 'Hair won't get into my lipstick' bit. I have always had a lot of hair, and this is one of the things that routinely happens to me in strong wind, at the beach etc. I totally got a chuckle-it provided a glimpse of normalcy-thank you!:)
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Going on day 2, feeling tired, foggy, trying to drink fluids. Know I have to eat, so managed down some toast and avocado. Going in later today for Neulasta. Going from fairly normal, earlier in week, to blah. Guess it feels like a hangover without the fun.
I was interested in 25weeks post because yesterday the doctor and I talked about how quickly things can change. He said rarely does treatment go without a snag. There was an earlier post about someone getting an infection and going to hospital for a few days. I had a few setbacks after the original bmx, but didn't think about setbacks during chemo. The doctor also reminded me about how important it is to be cautious while out and about due to the increasingly low immune system. I do not want to end up in the hospital again.
I was thinking about teeballmom, she started this thread/forum, and hoping that she is okay. She hasn't posted in a long time. Hopefully she is enjoying her family as opposed to a chemo setback.
Take care everyone
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Hi mamabr-
Today is day 3 and I managed to take myself to BS follow up. The biggest difference thus far for me is fatigue/lack of energy & some heartburn. I'm a little worried bc my mom just left, so I'll be on my own w 2 kids tomorrow on day 4, which may be bad. I'm also getting the kids ready to go to a bday party this afternoon, but luckily my husband is meeting me there. It's a pool party. I'm pushing myself just a little, but not too much. I was asleep lots earlier than usual last night & suspect an earlier bedtime than usual tonight too. But i was feeling fairly normal until day 2 afternoon.
Tricia -
It's nice to try and keep activities going for the kids. Maybe you can just sit in a lounge chair at the pool party and the other moms can keep you company. My family wants to go out of town this weekend. It might not be a bad idea because they can enjoy the outdoors and I can join if I feel well or stay in the hotel room. Enjoy the pool party!
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Hey Itsalltemporary!! Thank you so much you uplifted my day!!!
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First dose dense of Cytoxan and Adriamycin complete. I was so scared almost blew a pupil (yep--an a nurse). Accessing port easy (used EMLA), infusion easy-slept 3 hours. Back to my office-still OK. THEN--was like I was hit with the train of disorganization. Could not focus. Agitated. Took lorazapam. Still agitated. Then nausea hit. Took first dose of Emend prior to chemo. Took nausea meds and came home. Had hyperemesis with all of my pregnancies--so I KNOW nausea and vomiting. Sonic Route 44 Diet Lime-aide with extra lime X 2. Regular is too sweet.
Any and all suggestions. Love to all the members
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Hi Boobzilla - Glad to hear you are on day 7 - that means you are probably getting close to feeling normal and the symptoms are hopefully dying down. Yeah, the hair thing is a tough one. After I was finally convinced that the hair loss was inevitable, I went and bought a wig (actually two). Just needed to get that purchase done and cross it off my "to-do list". I bought a really cute regular wig, and then I also got this other wig that is a baseball cap with hair attached (easier than a wig to throw on, much more comfortable and great for the weekend errands and Costco runs). I did a pre-emptive shave on day 10 - which fell on a weekend. I didn't want to see myself with patchy thin longer hair. I also didn't want to wake up one weekday with my hair all over my pillow on a work day and have to deal with rushing around and having my head shaved before work. It gave me a chance to "practice" wearing my wig over the weekend before I had to wear it to work. I also told people around me (friends, family and co-workers) when the wig as going to make its debut because I didn't want to be caught in that awkward situation where people would be trying not to notice. So far it has worked out really well! I really think the anxiety leading up to the hair loss can be more stressful than the actual event. On the other hand, no one but my husband has seen my "tron-like" bald head. I think it would freak out my parents. My 21 and 24 year old step sons are coming home in a week and haven't yet decided if I want them to see the bald head.
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Been reading and rereading posts. Even better second time. Got home and slept 4 hours. moving from couch to bed to sleep more. Taking Craritin in prep for tomorrows injection. Hope it works.
Do not want to offend anyone--but for those who have read all of The Sweet Potato's Books----I REALLY need a gay best friend.
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Well gals I think I finally found a good head cover. Ordered several "Neff Beanies" from zappos and paid extra for fast shipping. They're comfy, reasonably flattering, and nice colors (well a couple are too bright and may get exchanged). I wasn't feeling good about the Buffs or scarves or silly wigs I'd bought previously. The beanie is the first thing that is comfy, easy, and doesn't scream "cancer patient" to me. Plus they're so cheap I don't hesitate to buy multiple colors.
I'm almost feeling ready for the hair to fall. It helps that it's getting so painful and itchy. It will be nice to be relieved of that.
I had a consult with a cardiologist about my heart stuff. I'm wearing a 24 hour monitor and having a stress test tomorrow. The symptoms seem to be clearing up anyway, so I'm feeling pretty confident the test result will be good. She said it will show conclusively whether I've lost any heart function or not. I'm ready to put this worry to rest and get on with round #2.
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Round 2 was yesterday. The oncologist dropped my chemo dose by 15% and so far things are much better. I had some nausea last night and I took a kytril which got rid of it completely. I had NO nausea today. A bit of a tummy ache today, but tums took care of that. I didn't wear my contacts and I have been flushing my eyes so almost no eye discomfort. I have so much more energy than day 2 last time and went for a short trail run this morning which felt great. Then I had the neulasta shot this afternoon. Hopefully, the neulasta shot and the lower chemo dose will keep making things easier than last time.
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Had an entertaining evening tonight, one week after my first TC. Went to hear a friend sing some karaoke (I currently can't sing as the chemo seems to have kind of trashed my throat). A very young (25?) drunken hipster seemed very interested in me, which amused me and gave me a moment of feeling like a girl again, after all of the surgery and treatments and ports and bruises and scars. It was kind of nice to have someone notice me. He kept commenting on my smile, to which I replied, "I've cut off all my hair, makes my smile easier to notice.". Anyway, gave me a good laugh and a teeny bit of an ego boost, which I sorely needed. And my friend, as I broke into a coughing fit, looked at, deadpan, and said, "What's the matter? You sick?" Then she smiled. Almost felt normal for a moment...
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Hi, I have a question. I started chemo on July 9 th. The first week I got Cisplatin and week two Taxol was added and I now get both drugs each Monday for 12 weeks.
I am also taking a pill each morning as part of a Clinical Trial for Triple negative IBC.
After three weeks of treatment I haven't had any side effects until yesterday. I am having pain in both knees and legs. At times it feels like fireworks going off inside of me as I am having shooting pains in my entire body. Has anyone else experienced this? Also, when do you usually lose your hair as I want to shave it before it starts to fall out . Thank you in advance for any advice you may have. Marianne
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