January 2012 chemo
Comments
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Layla2525: In the end, all of our treatment is our decision. My oncologist told me that from the moment I met him, and all the documents he used to share info about my options were entitled, "Team Decision Making". After he explained it all to me, he again told me it was my decision. He gave me projected outcomes with chemo, and without. I could have decided not to have chemo - have actually considered that, just sitting back and waiting to see when it comes back again - but for a variety of reasons I have chosen to have chemo. Once my Oncotype score came back (at 42) my chemo regimen changed dramatically - but again, my doctor explained it was still my choice to do this regimen, or not.
Strange as it sounds, it's very weird to be in charge of something that is so out of my control. I said earlier, if I had a broken arm the doctor wouldn't hesitate to say, "You need a cast." If I had a hernia, the doctor would say, "You need an operation." Very rarely are we given choices about our medical care, nor are our choices necessarily respected at other times. I am finding cancer to be a very different disease, indeed, in that practitioners really look to us to determine our future.
I hope this helps. Making this choice was the hardest, by far, that I've ever made. Take some good quality time to weigh your options as you make these, and other, healthcare choices. Good luck and blessings to you,
Nancy
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Kite: I don't remember what your regimen is, but if you're feeling that awful can you call your doctor? I know mine has said to call if "something doesn't feel right" and that no complaint is silly or too small: "We can't help you if you don't tell us you're feeling bad." I hope you feel better soon and as Mom said, check your temp too! Take care!
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Hi Layla2525
You sound just like me!! Here is a link to the Genomic Health Lab that will test your Cancer and your DNA to answer your Question. Normally this is done after your BMX so there is enough material to send them for the test. The Oncotype DX Test results take about 10 days to come back. Ask your surgean to order the test for you instead of waiting to meet your Oncologist after your Surgery. Waiting for the appointment and then the test to be ordered and then the results cost me an extra 30 days of not knowing.
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So, interesting experience at chemo school yesterday, given all that we talk about here. First, Ativan is not given - the nurse says they used to do it years ago but found people don't really need it so they don't suggest it nor give it. If I really feel "out of control" they'll do it the first time. Hmmm I might have to be out of control, just for the first time.
Second, the nurse does not recommend the Claritin. Says they haven't seen a correlation between lessened pain and Claritin - um, really? Cuz that's not what I'm hearing here! Unfortunately, because I'm part of a clinical trial I have to run some OTCs by my coordinator, so I'm calling her on Monday to discuss both the Ativan and Claritin issues.
I'm confused, too, about the use of Aleve or Tylenol. They were adament that I needed to take my temp at the first sign of feeling crummy, but if I'm taking an OTC for bone pain or headache, wouldn't that mask a fever? Sounds like another question for my coordinator.
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Kite... You and I are in the same boat today. I have felt awful. Had my first chemo last Monday and felt okay until yesterday. Ended up calling my onc today and he told me to stop taking my compazine as I was so foggy I could barely stand.... Apparantly this is a SE of anti nausea meds. And I have been checking my temp every few hours as well. The nausea and stomach cramping are horrible.
I too have been crying on and off today. My parents had to take my 18 month old son to their house on Thursday for the next 4 days as he has a whopper cold. The guilt just about killls me. At least my 4 year old daughter likes to come up to my bedroom and hold my hand while we watch Bubble Guppies or Dora. Thank you for posting because it made me feel like I am not so alone after all.... And neither are you!! I do hope you feel better. I don't wish some of these feelings on anyone.
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Layla - A lot will depend on the pathology - are any nodes positive, suggesting it might have started spreaading, there's the oncotype test for some types of tumors, or if you're triple negative (meaning the tumor is not affected by estrogen, progesterone or her2), they don't do an oncotype test - chemo is pretty much the standard because it's such an aggressive form that nothing else will keep it at bay if it has spread. But do your research and talk with your doctor. As a few others said, yes, chemo is a pain to go through, but at this point, it is the best option we have to reduce the odds of recurrance. I'd rather lose my hair and feel crappy for a few months if it means I never have to hear the words "you have cancer" again. There are some other threads here devoted to this debate - with all sides and all options (naturopath, etc) that you can consider. In the end, go with your gut. As for oral chemo, there are some drugs that can be done orally, but for the most part, the drugs they use specifically for breast cancer are not available in oral form.
Momof2 - {{hugs}} It's good that you have your parents around to help out. I'm sure your son will be really happy to see you in a few days. Enjoy the hand-holding with your daughter. That sounds like some great bonding time. I hope you feel better.
NancyHB - I am really surprised that someone would say that about Claritin. It's one thing to say you haven't heard of it, or that there's no research evidence, but heck, we've got our own informal research going on here (and the December crowd seems to bear it out too). As for Ativan, I wasn't offered it, but I didn't ask for it either, and I was perfectly fine during the infusions. As for fevers, I was told not to take Tylenol for fevers, but if you need it for pain, by all means take it. I don't think Advil affects your temperature, but on the other hand, Advil and Alleve are blood thinners, which isn't great if your platelet count is low. I guess if you're watching your temp and it goes up a little, just let your doctor know whether you are on Tylenol.
I just went to the gym for the first time since before my surgery (except for a few rounds on the treadmill at PT). I felt great, but walking back I was a bit winded. It seems to be taking longer for my pulse to come back down. Hopefully I can start working out a little bit here and there when I'm up for it.
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Mom of three boys, I understand your upset on the mammo not picking up the tumor. The same thing happened to me although I did have an MRI and Ultrasound before my mastectomy and it still didn't show up. In fact it didn't even show up to my surgeon during my surgery. It wasn't until the path report is where it showed up! This tells me there is NO test out there to catch tumors even invasive ones.
Now that is scary! -
Momof3, It does sound like we are in the same boat. I did call and they said to take Immodium and if that doesn't help go to ER. So far it's been ok. My mom has been helping me with my boys. Im either staying at her house with both of them or spending the night at my house with one of them. The guilt gets me too. My 4 yr old understands a lot better too. He's always checking on me and telling me he hopes I feel better.
I am hoping for an easier day tomorrow. School starts Wed! Yikes!! -
I got my chest tube out yesterday (OUCH~!). I had another xray today and my lung is staying inflated so my BS said I am okay to start chemo. I was supposed to start last Monday (with momof2inme), but the collapsed lung from the port placement set me back. Now, I have to wait for the MO office to call to tell me when I will have an EKG and start my chemo.
I am so thankful for everyone sharing their chemo experiences and what helps and so sorry for those with bad SE. I know you all will be here for me when I finally start chemo. Thanks everyone for being here!
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NancyHB - I never heard of anyone else, besides my sister and me, where local anesthetic injections don't work. Most doctors still don't believe me when I tell them. When I had the chest tube put in on Tuesday, I told the doctor but he said he HAD to do it under locals so that I could breath when he told me. It was awful. I was crying and asking why they couldn't give me something more for pain. They gave me morphine and some sort of sedative but I was awake and felt a LOT of pain even after they kept shooting the local anesthetic injections in my foob (they put the chest tube through my right foob into my lung). Is there any way I can insist doctors use some sort of general or twilight anesthetics when I have procedures? You would think it should be MY decision. It makes me so mad that I have to keep enduring such painful procedures. I feel like I am being operated on with no pain relief. Just wondering if you got doctors to believe you about locals.
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Momof2inMe - {hugs} - I hope you're feeling better!! Enjoy watching TV with your little one -- even though you're going through a crappy time, you at least get a little more mommy/daughter bonding!
NancyHB - I am very surprised about the Claritan. My MO's office swears by it. They put it on all the papework about SE. They admit they don't understand the correlation, but they say it works. And I'm a believer, so far anyway...I took mine on Thurs, had my Neulasta shot yesterday morning and I feel fine. The only SE I'm having is a little nausea and I'm tired. I took my DS to his playoff hockey game this afternoon and was gone for 3 hours, then I came home and took a 4 hour nap! Everyone in the house is sleeping and I'm wide awake!
Catwhisperer - I've been under twilight for all of my procedures so far - my lumpectomy/SNB and port placement. You should definitely find out why they can't/won't do that. Are you having these done in a hospital or surgical center?
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Cat: I had never had a problem with locals before my biopsy. My BS did the biopsy using local, which is typical - but apparently it didn't work for me and I felt almost everything he did. I had some good moments - but not many, so he kept shooting me up with local. He told my husband he used enough local he could have taken out a watermelon sized lump, so I don't think he had a hard time believing me.
So when it came time for him to do port placement on Thursday, the anesthsia tech came by to meet me, picked up my chart and said, "Oh, you're the one I've been hearing about. Yup, no local for you..." I didn't have to ask for general, my BS ordered it for me. However, I would have demanded it had he not.
When my mother was experiencing serious heart problems (leading up to open heart surgery) this last spring, I learned that many doctors and nurses have a " deal with it" attitude. My mother has very small, very deep veins and IVs are all but impossible. We insisted on an IV tech to start them, and were denied every time. We asked for a lidocaine stick to make it more tolerable for her, they said they couldn't. It was angering and frustrating, and to this day I am still upset. There is no need for anyone to endure excruciating pain for a long period of time.
I'm sorry about your recent experience. Maybe now that this is over with you could approach your doctor and ask why this had to happen, and how you can ensure that it doesn't happen again in the future. A note in your file from your MO would go a long way towards helping you in the future. Good luck dear and feel better soon!
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Just checking in with everyone.
I feel so bad for the Mothers of young children, this is hard enough for me with a teen. I cant imagine but you are always in my prayers.
Also I get so mad hearing that some nurses and doctors dont give adequate pain relievers for procedures. I too have terrible veins and my providers have been wonderful with that but trust me I have nightmare stories in the past with IV's. You know it all comes down to the compassion of the provider. A little empathy and compassion goes a very long way!!
Just to compare symptoms, it seems my worst one right now is I cant go to the bathroom. Im so constipated and bloated and full of gas. At this point diarrea would be welcomed. Also its like I get imapcted and then there is also diarrea behind that causing cramping and pain. Im going to have to try a laxaitve today. Stool softners, salads and apples are not helping.
Jenn, my port still hurts really bad too and my axillary arm is very sore to touch all the way down to wrist. Wierd.
Hair is loosening up but nothing major. This is day ten so I probably have a few more days before I shave it.
Im choosing to stay out of crowds. I will miss church but its flu season and God is here with me. I will just miss the coorperate praise and worship and fellowship. My pastor has his messages online every week which is good. Monday will be a good quiet day to listen. My church friends have been so good to me.
For those who are becomming depressed, please dont suffer too long. I take Celexa and a little nerve pill. It has been a God send. I started slow with 5 mgs by breaking my pill in 4 pieces (cause I was scared) and within two weeks I was on my 20mg. dose. It's the only one I have ever had success with. Side effects were minimal. Please ask for help before you become hopeless because that can become worse than the actual BC and chemo. We all need help sometimes.
God Bless you all and I send this with love and prayers
Rhonda
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Peggy checking in here.
Just got home from 4 days in the hospital. I didn't feel quite right Wed night. I was tossing and turning in bed. I was going to take a tylenol, thinking I was achy from the neulasta, but decided to take my temp first. Good thing. It was almost up to 38. We got up and started getting ready to leave and within 1/2 hr. the temp was 38.75. By the time I got to ER an hour later the temp was 39.
Just FYI I had taken temp at 5 PM and it was normal. My other symptoms were fatigue, no taste or appetite, white tongue and swollen tender gums.
I was given intravenous antibiotic IV 3 times a day and a neupogen shot on arrival and every night thereafter. By the next morning my fever was down to 38.5 and I was already feeling better.
Doc. said my dose was to high and would be adjusted.
Sorry to read about all the problems everyone has been having. I had only minor bone pain with the neulesta shot but the neupogen was a different matter. Fortunately 500ML of Tylenol took away the pain each time it started and it did not return. It seemed to be worse about 12 hours after each shot.
Peggy
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Kite- Hope you are feeling better. I have had a tough go-around too. I know that no two experiences are the same but I can tell you that I eventually do get back to more of my normal self and that that depressed feeling seems to only occur for me when I am physically feeling my worst. With treatments every three weeks, there are lots of good days in between, even if you hit a rough patch. Sorry we all have to go through this.
Mom of 2- I just learned of Bubble guppies after starting chemo. LOL My daughter who turns 4 in February watches it, and I can't get that song out of my head! I know how you all feel with kids. I have a 7-month-old and nearly 4-year-old. Kids are resilient, and just because it affects them, doesn't mean that it does so in a negative way. I try to remind myself of that as I am wallowing in guilt on days I have to let others care for them when my SE's get too bad.
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I am sorry to all the ladies who have had trouble with your ports. I've been out of it and haven't commented on it. I am sending lots of love and good energy your way.
I am feeling much better, still weak but not cramping. The Ativan sure helps me relax and sleep well. I'm always waking up every couple hours and never getting proper rest. So this helps with that a lot. My port feels ok, except when my little bundle of 2 yr old kicked me there. Eek!
Is it April yet?! -
It's 4.46am and I'm awake because the nausea hit again (day 4!!!!????). I just want to send a big hug to everyone struggling :-)
Kitchenella - so sorry to hear you had to have a hospital stay...
Shell-Seeker - prune juice????
Jenn -
Peggy - So glad you checked in! I was getting a little worried about you. I guess it is pretty important to keep checking our temperature. So far mine has been below normal.
Kite - I too am keeping my eye on April - April 13th to be exact. It can't come soon enough. I can't imagine caring for children while dealing with this stuff! Mine are all in college and safely back in their own apartments. It took all of my energy to stay positive for them while they were home for break. Now I can become cranky and selfish again.
My SEs haven't been too terrible. Just an overall feeling of yuck. I'm at day 10 and have more energy and less nausea. However, I've noticed that I have a persistent feeling of light pressure at the back of my throat. I've been blaming it on heart burn or gas, but am now wondering if it is related to the port in some way. I think I'm thinking about it too much. Also, my scalp is feeling funny. I've been washing my hair lightly every three days and haven't noticed much shedding. The texture has changed though. My skin is very dry and I have been having little outbreaks of acne.
I skipped church today and am taking a sick day at work tomorrow. Our students have MLK Day off, but staff is expected in for an in-service. My boss encouraged me to work at home whenever possible, so I'm going to do just that.
Oh well! Next tx is Friday.
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NancyHB claritin does work. I accidentally tested it. I took it the day before and 2 days after. On Sunday I had so much bone pain I was miserable late afternoon I went to take my zofran and realized I had not taken the claritin that morning it was still in the med container, 2 hr after taking all pain was gone. I took it for 7 days to be safe. I will not make that mistake next time, Sun I had to take a 5mg oxocodone, it did very little to help the pain, but sit-in 2 hours of claritin all was gone
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does the claritin have to be Claritin brand or the generic?
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The generic loratadine worked great for me
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Generic for me too...
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Kite, I will also be on TCH and Herceptin. 6 TC, hercrptin every week for 18 weeks an
d Herceptin every 3 wks for a year.
I will be getting my port in Jan 24, and my first chemo on the 26th. I worked this weekend and am trying to do everything I need next week. Hope I can hold on, I am getting very worried. -
Catwhisperer, I don't know, it could it I be you just need longer for it to work? Maybe they could wait longer. I know The docs always have to wait longer for it with me. I had s pacemaker pit in in Jan of last year, and I think the port placement will be similar. 2011 still sucks bigtime. Good luck
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NancyHB - My biopsy was the worst too. I felt every cut and tear. She drew out some cysts too which was just as painful. I had told her that locals don't work but she went ahead anyway and did not stop even though I was screaming and crying. I didn't go back to her after that. My new BS seems much more sensitive to my needs and put me under for the port but he left me in the hands of another radiology doctor for the chest tube. Again, I told the doc that locals don't work and he promised good seditive and morphine. It took the edge off a bit, but was still very painful. that was about the 4th very painful surgery I have had under locals that felt like nothing was used for pain. I am so tired of it. I am now fearing for the port removal even though I know it is months off. I am having nightmares about the chest tube just like I did after the biopsy. It just seems inhumane to me that I have to endure this time and again with all of the different anesthetics out there. Sorry for venting.
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Hello ladies. Do you mind if I come in and join you please?
I am having my first FEC x 4 on Friday, then Herceptin, then rads.
I am as prepared as I can be.
Cheers, Kate
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Hi, ladies! You don't know me yet, but I've been reading the boards since my diagnosis on 11/20 and feel like I know so many of you. If I have any semblence of sanity left at this point, I owe it to all of you; you've definitely been a huge help to me for the past several weeks.
I have an echocardiogram scheduled for this afternoon. Beginning at 7:30 tomorrow morning, I have port placement then go straight to my first chemo treatment (TAC). I'm nervous about a lot of things, but right now my main thought is how soon after my port placement can I sneak in a cup of coffee?! LOL! Leave it to me to be most worried about food & drink (since I can't have anything after midnight tonight due to the port procedure). It will be a long day.
Thanks to each of you for sharing your stories, concerns, encouragement, successes and failures; they've been a lifeline for me.
~ Rai (pronounced "Rae" not "rye")
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Good morning Kate and Rai - Welcome to the group. Sorry you had to join!
Kate - I'll be having my second infusion this Friday (AC). I'll be thinking of you as you begin this journey.
Rai - I found myself sipping coffee and eating a delicious chicken cutlet sandwich right before my first infusion. I'm sorry to say that it might have been a mistake. I can't stomach either one now since they are linked with the treatment and SEs. So, take it easy with that first meal and coffee after port placement. Hopefully you won't have the same reaction! Good luck!
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GeorgiaRai - I couldn't wait to have food and coffee after my port placement! I was starving. My surgery wasn't until 2pm and I had such a caffeine headache! I had a huge turkey sandwhich when I came home. I had a cup of coffee the day of my 1st treatment (the day after port placement - ouch). Then the nausea hit for 3 days - no coffee. I had my first cup today and it tasted disgusting. I'm hoping that it was because it's a new coffee that I'm experimenting with. I got a Kurig for Christmas and have been trying the little K-Cups that came with it. Not having this kind again...back to the cranberry juice!
Good luck with everything and welcome to the group.
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Layla, I didn't think I would need chemo, but turned out I am Her2+ so I needed it after all. It really was not too bad, and I used cold caps so I didn't have to lose my hair.
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