January 2013 chemo group
Comments
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SherylB, what I had with with the compazine back in '85 while being treated with radiation for Hodgkin's was a rare side effect called nuchal rigidity. My neck muscles spasmed in the back and got really tight. That caused my head to be stuck in a position like I was looking up at the sky. The muscles were so tight from the spasms that I could not lift my head up and flex it forward or stand with my head facing straight. I don't recall having any headache with that. The RO put me on Reglan for the remainder of the radiation. When I had the recurrence two years later and was being treated with chemo, they started me on Reglan for nausea, but the Reglan caused my diaphragm to spasm so I couldn't breathe properly. Ended up going off that and being put on phenergan.
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LisaMM,
I have also had stomach pain (as if I have to run to the bathroom) for a few days after each round (of TC-H). At this point, I'm assuming every weird sensation is chemo-related, because I am usually in pretty good health.
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As far as the "helpful" people that make puppy-sad eyes and worry about me, I've discovered a trick. (Which, I'm aware, the rest of the female world discovered eons ago.) Lipstick! I've never been a makeup-type person at all - who has time - but now I've discovered that if I keep a lipstick in my coat pocket, and spend about five seconds with it in the car, people don't tend to get all pity-party on me, because I actually do look better.
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Deebella, I'm so sorry you find yourself back in the middle of this. I don't think we have many women in this thread who are dealing with recurrence, but there's a whole area of the discussion boards for recurrences (look in the area for finding people with similar diagnosis). But, of course, you're always welcome here if we can help or support you at all.
Debbie, I totally know what you mean about the drugs and treatment. I have to psyche myself up to take each pill, and while I'm not a huge fan of drugs, I've never had that problem before. And I put off that chest X-ray last week because I just felt so sick of being a patient. I have no answers, just lots of love.
And I've been wondering what the hell people are thinking when they respond to my dx with, "I knew someone who died of bc." It's such a ridiculous response -- obviously that's the very last thing we need to hear. I still haven't figured it out.
Jubby, I'm so glad you said that about the Irish and FEC. That's what I always think when I see it! -
LeeA, I have been trying to find your post where you gave posted a link with the protein info. Would you mind sending that again. Thinking I will try to up my protein this go-round. Of course when the tastes go all bets are off. And needing to start the downpour of fluids tomorrow in prep for round 3 - or so I think. Intentions are always good, but . . .
The thought of this #3 really has me worried. I am sooo not looking forward to the awful taste that was going on last time. Knocking on wood that it isn't worse or lasts any longer this time. For my last good meal I'm making cheese and chocolate fondue for a special girls night with my daughter's tomorrow. Ha, you would think I was going in front of the firing squad. Well, almost!
Shawkins you gave me a great laugh today. That would just not be right for you to have hair growing where it never did before.
Mandy I started to wonder if you were going to the Disney Center, having elephants with tutus at your special day. LOL
Skigirl talk to your MO and do what you need to kick the depression. No need to beat yourself up because you haven't dealt with it before and hate taking medication. We all have literally been, and are going through hell. A couple of other options to try would be reiki and meditation like some of the ladies have posted on here. Sheryl makes a very valid point that maybe it is anxiety driven. Once you are back at work it may help you to feel a bit more normalcy again, and lift your spirits. Damn, it is always a mood lifter to watch other's getting sloshed. LOL
Shannon I always love reading your posts.
Fighter I can't believe people actually bring up death with you. I've found that people are just the opposite with me and act as though this is not a life altering battle. I also feel that because I don't look sick that everyone thinks there is nothing going on. I've said it before and I'll say it again, we don't have a choice and must pull ourselves up by the bootstraps.
deebella I am so sorry you have to go through this again.
Well all you lovely warrior women, good night and may you all rest well.
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Skimommi - TonLee from the Triple Positive thread is the true protein guru. I'm just following what she has talked about on that thread, which is the reason I joined BCO.org (meaning, I joined because of that one thread).
Check out some of her posts. Here's an example of one (with a link):
TonLee:
"Eat what you like. All things in moderation. Except while in chemo and rads...then you need much more protein in your diet. Protein is the building block of every single cell in your body. Chemo attacks fast growing cells. Some of them, like in the GI, are healthy and once destroyed/damaged need to be repaired. It is vital you get enough protein to aid this process or your body will "eat" your muscles to get the protein. It's the body's triage. Cells get first priority, muscles don't. I shot for 100 grams of protein a day...easy to do with FAGE 0% yogurt, which is low cal and high protein, mixes GREAT in soups, smoothies, dips, etc."
http://community.breastcancer.org/forum/80/topic/764183?page=504#post_3405452
Here's another one of her great posts (with accompanying link):
TonLee:
"..I lived on Fage during chemo. My dietitian said at least 100g of protein a day to help repair what chemo destroys. There was no way I was eating that much meat....lol. So I ate Fage, with PB2, frozen with sugar free hot fudge, sometimes blended into smoothie, just anyway I wanted... Regular yogurt doesn't have the protein punch that Fage does, even the regular Greek....it was the best protein source with the fewest calories...and it is DELISH! lol I still eat it almost every day."
http://community.breastcancer.org/forum/80/topic/764183?page=485#post_3378634
And one more:
TonLee:
I used Fage 0% yogurt for most of my protein needs during chemo....you can blend it with just about anything, or eat it plain.....really gets your protein up without many calories!
http://community.breastcancer.org/forum/80/topic/764183?page=379#post_3269301
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bcfree, I had trouble with my WBC. When I went for my second treatment they said my WBC was too low and when I went again the following week they said my count was still too low and asked me to take another set of Neupogen needles. Yesterday, my WBC was 38.7. Yippee! Unfortunately that meant 4 weeks between Tx1 and Tx2 but I was just so happy to be able to get my treatment. My MO reduced my dose and I'll take Neupogen again and hopefully be good to go again in 2 weeks. So don't despair, I think for some of us it takes a bit of adjusting at the beginning to get everything aligned. For me I always thought I was pretty healthy so it kind of came at me from left field and gave me something else to worry about. But in the end another dragon slayed for now! I also made a personal decision to stop working and put me first. My job wasn't the 9 to 5 type of thing and it just became too stressful for me to try and do it all. The blip with my WBC made me reconsider my approach to getting through my treatment so I'm looking at it as a blessing in disguise.
I hope that makes sense, like tx1, I'm not sleeping well after tx2, so I got out of bed at 3 am to eat something to quell my stomach. I thought I would try and catch up on the posts, which I've given up on. Maybe now that I'm not working I'll be able to keep up! And with my new found free time I'm seriously considering the 1-2 hour drive to Buffalo to find Fage yogurt!
Let the good times roll, my friends. -
Oh, I better change up that avatar now for something a bit more positive! That was when I was feeling miserable and sorry for myself. Better now.
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FUC woops FEC #2 done & about to hit the hay. Doing Claratin this round to see if it helps. Nausea has kicked in much earlier this round & hoping I can keep on top of it. Waiting re bowel spasms. Will reply to the person who asked about it later. Just a thought re protein. My sister- in-law is a dietician & she says eggs (particularly the whites) are the highest source of protein. If you can't fathom meat, an egg white omelette could be a go-er or any egg dish. Bizarrely I craved egg & soldiers after last chemo. I added a good pinch of salt (bad) but my palate goes into salt and spice overdrive post chemo.
JayJayc, this diagnosis is crapola at any age so don't feel guilty about being a whole 9 years older than us which, BTW, is still really young!. I just get peeved when I am being told by an older person that chemo is bad. Or any person really. Respect my choice given my circumstances even if if is not yours. We all have to walk our own path. The 'I know someone who died of BC' is something I hear a bit too. But the piece de resistance was a friend staging an introduction to her terminally ill breast cancer friend with very advanced stage 4 cancer the week after my mastectomy for some 'tips' on how to cope with cancer. The BC lady was lovely & very kind, but boy oh boy, was that a slap in the face for someone who was already freaking out & 3 weeks post diagnosis.
Rambling now (it's the drugs) and typing in bed on phone. Time to rest. OVER....but not outxxx
PS. Good luck LeeA, skimommi, cancernoway & anyone else I have missed heading to the bar this week. -
I totally agree with you. I was 60 last month. I had a Social Worker at the Hospital tell me that I should be happy as I have had a good life. She is the same age as me. I asked her how she would feel if she was dealt my diagnosis? Would she just accept giving up? I want to be around another 20 year's. Would love to watch my Grandchildren grow up. Some people just don't get it. Thanks for your post..
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LisaMM ~ I definitely recommend checking with your MO about your stomach pain. I had stomach discomfort after my first 2 AC treatments and just managed with Tums and a licorice supplement from my naturopath. By my 3rd treatment, my whole GI tract was inflamed and miserable and I got pretty sick. With one phone call to my MOs office, I got onto Prilosec and Nystatin. Things have been so much better since I did! I recommend being aggressive with stomach problems!
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Just had my 2nd treatment for DCIS last thursday and now I feel like I have the flu. Sinuses are all congested. Muscle aches, headaches etc. The decadron is not settling with me. They cut the dose in half this time, however I'm more sick now than the 1st treatment. Don't know if my symptoms are due to the decadron, chemo or my resistance is low and now I have the flu. Just want to cry. Have to say not sick to my stomach, actually eating very well, too well!!
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Lee - Thank you for sharing your unfortunate/inspiring story about the two women who chose the nasty chemo route and survived. I'm mostly all in, but for this naturopathic, accupuncturist loving future survivor, I'm periodically plagued by doubt about what this is doing to my body, *besides* killing all those horrible insurgents. But I am amazed every day at the body's ability to heal, carry on, and triumph!! Your story really helps.
Would you mind posting the hypnosis link again? I lost my little sticky where I wrote down the website.
Thanks!
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I like to think of it as "covering all our bases". Surgery? CHECK! (Get that nasty, little lumpie out!) Chemo? CHECK! Rads? CHECK! (Let's let years of research and study provide us with the best options medicine can provide.) A healthy lifestyle and alternative medicinces and/or therapies AFTER I give the trditional medicines a go? CHECK! Why not explore ways to be more proactive with our own health, make ourselves stronger, fitter and better? I say go for it! In my lexicon, there's room for whatever you'd like to try...but everything in its time and place. Right now, my focus is obliterating the nasty through SCR- surgery-chemo-rads- and i'm going to give it my all. After that, i'm interested in looking at anything and everything else that's gonna tip the scales in my favour and increase my quality of life...i'm very intrigued with the dandilion leaf tea...don't even care if it tastes like ass...gonna be DRINKING that brew. And if accupuncture works for people, or meditiaiton or homeopathy or naturopathy or running naked in the moonlight and praying to the goddess floats your boat, SO BE IT. We each find the path that is right for us and wander down it at our own pace. Some of us run, some walk, sometimes we crawl but Sweethearts, we all get there in good time. I believe the point is to commit to the path that you're on and give it your ALL...its your life. You make your choices...make them count. xoxox (self-pep talk over)
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skimommi: You may want to try to get the high protein drinks from Trader Joes, 35g per can. They have the 21g and the 35g type.
Day 4: chilled and fever at night, leg cramped, took some tylenol and sleeping pills to sleep
Day 5: feeling better, but sleep most of the day
Day 6: at work now, anticipating . .
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Deebella - it's nice to meet you! We will help you in anyway we can on here. After 6 years, that is a shock, I'm sure! I'm sorry to hear that, but thank goodness that you found your lump. I have had a BMX and I'm 1 year out. For those with recurrences, if you look under TNBC, forums, there might be a forum for TNBC recurrence, to see what others have experienced. I've come across a couple of TNBC sisters who have had a recurrence after so many years out, and I know they will have some great suggestioins for you! But hang around here too, I'm sure you will also get some replies on here too!
Sheryl - I had all my drips done slowly. They did the first one slow, to get me used to it, and it worked so well, without any nausea/upset stomach, etc that each cycle after that, I had them do it at the exact same speed. Mine consisted of 2 small bags of medicine to prevent nausea/stomach problems, and then the 2 treatment bags. I didn't mind that it took longer, I took a warm blanket with me, lots of magazines, some treats, etc. Actually it was the one time where I felt I actually stood still and rested - was at the doctor's office.
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Marianne - I so agree with your post. Just because 60 is one person's "you've had a great life" age, does not mean it is ours! I've always thought I would live, frankly, to 100. Getting a bc diagnosis, and then realizing the fear that we might not get to be as old as we once thought we would is a big emotional challenge. Of course, I'm not saying I don't have expectations, that I can still get there, as can you, etc, but in general, the whole thinking that we will naturally get to grow old becomes replaced with thoughts of "if I can only get to such and such age I would be happy". I'm 45 now, 43 at dx, and everyday there isn't at least one point in the day, if only for a brief split moment where that thought comes to mind.
LeeA - I'm going to have to try Fage yogurt. I see it's all the craze on here. I need to find a way to get more protein in, especially after my workouts. I stay hungry 100% of the day, so I'm pretty sure it's because I'm low on protein.
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Skimommi: I also saw a Whole Raw Food Organic Protein Powder at Sprouts the other day. It had a high rating on amazon.com and looked to be very healthy, considering it was a protein powder. It had 17g of protein per serving.
Here is the link, it's called Garden of Eden:
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Liz_58, thank you for the info. on white blood count. I plan to eat more and exercise more to help with the situation. I hope both of us will have smooth treatment.
Skigirl72, I also get scared from time to time, worrying about recurrence, although I've just started treatment. I seem to be at my darkest moments when I wake up every morning. But I also tell myself to be as positive as I can. I work from home, so whenever I can, I force myself to work a little bit. If I am not feeling well, I read books on healthy living/eating etc, getting prepared for my life after treatment ends. I think it's the meds/chemo we are getting that make us feel bad. Things will get better. Take one day at a time.
LeeA- I agree with you that the natural route won't work for most of the ppl. I've read several books written by ppl who cured their cancer through exercising and eating healthy. I think they are lucky. I believe in chemo treatment but also plan to eat healthier and exercise more.
Deebella: I am sorry that you have to deal with it a second time. I am also triple negative and worry about recurrence all the time. But I've heard of a lady who had local recurrence in about 4 years, went through the treatment again, and lived more 30+ years after that. Be strong!
I am having my second AC in a couple of days and I am getting scared again. Is chemo side effects such as fatigue cumulative? -
Friday is my next battle. Thank you all for the good vibes! I am taking things one day at a time now. No other way I guess. I am going to ask for some happy pills. Maybe they have something mild. We will see.
Good luck to all of you in battle today and this week! Death to those little bastard cancer cells!!!
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Skigirl, keeping you in my thoughts/prayers. I've taken low dosage happy pills at times in the past. They've provided a good bridge when needed. I always ask for the lowest dose possible and then go from there and if I need them again, I will request them. I've also taken Sam-E - which is OTC.
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Someone* asked for the Om meditation link - here it is:
http://www.cyberastro.com/member/data/sat.htm
*I would look back to be polite and use a name but I'm late, late for a very important date - with a plastic hanging bag.
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Shannon ~ I really look forward to "running naked in the moonlight" -- thanks for giving me a chuckle today and something to look forward tomorrow.
bcfree ~ I have done 4 rounds of AC and in my experience the side effects are cumulative. My exhaustion now (day 6 after #4) is pretty profound and I did not feel this way during rounds 1 # 2. With each round you will learn what you need to take care of yourself and you can carry that wisdom with you into your next round.
My struggle is actually using the wisdom I have gained. I have been so self sufficient for so long, especially when it comes to managing life's various aches and pains, that I am not good at calling my MO when I should. I had a great result with the call I made when my GI symptoms flared after AC #3, but it has taken me 3 days to call again after a raging case of hemorrhoids erupted after AC #4. I just assumed Preparation H, Sitz baths and Tucks pads would take care of it like it always has. Well, there's nothing "like it always has" about chemo. My body was not under active assault from chemotherapy in those "like it always has" days, and I have got to get better about letting go of my ideas about managing everything with good lifestyle practices and OTC medication. I guess I also need to stop beating myself up about my reluctance to call my doctor with every new ache and pain. Pain is inevitable, suffering is optional. I have a new prescription and once again, new hope for less side effect suffering soon.
I also have a great appreciation for the sweet gestures of friends. A long distance friend sent me a funky crocheted scarf this week. I put it on this morning and since it isn't exactly my style, I asked my 8th grade daughter for her opinion. She said, "well, it looks like a coral reef around your neck". (One must love the absolute honesty of a 14 year old daughter!) I was feeling a little sad and decided to wear it anyway because I appreciate the love with which it was sent. There have been several moments today where I have just snuggled my face into this funky crocheted goodness, and it does comfort me. Thank God for good friends.
Be well, my sisters. So glad to have all of you to go through this journey with. It's a hard one.
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InspiredbyDolce thanks for the info on the protein drinks. I have a mix at home that I plan to drink more during this next round. I hadn't paid enough attention to LeeA's comments on the protein, although I had made a mental note. So thank you LeeA for reposting that information. I think there was something else you posted that showed the foods that are high in protein. I've done some googling on the subject today and learned I can live on lobster for three meals a day everyday and I'll be golden. LOL Didn't Nikki also comment on how surprised she was at the difficulty to reach 100g of protein a day? I'm keeping track today and certainly don't think I will make it. But the protein shakes and Fage surely will help in days to come. Then again, I had mostly veggies for lunch and am having fondue for dinner. That won't help with my protein count at all.
Running naked in the moonlight sounds good to me!!
InspiredbyDolce does your name indicate your appreciation for the finer fashion? I don't consider myself a girlie girl, but I certainly have a thing for shoes. I have no problem wearing sneakers and sweats or jeans around on the weekend. In fact my sister-in-law calls me "outdoorsey", and not because of my love of hiking/skiing/biking, but because I don't dress to the hilt like she does to go shop the resort towns. But, I have also been known to wear my designer 4" heels out in the snow, and can be found cleaning my house in my Miss Me jeans on the weekend. I guess you can call me eclectic.
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deebella, as Sheryl said, you have arrived at the best place for the support, empathy, and encouragement that you may need as you go forward with another round of treatment. Best wishes and prayers.
fighter, I fully agree re: being careful who to talk to. I'm astounded at the thoughtless comments that have been directed my way and I continue to be shocked by the experiences that I read about here on these posts. Hugs ...
Martha
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Yikes, I'm headed for the second AC tomorrow morning - it's time already. Best of luck and prayers to all who are headed in the same direction!
Martha
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Ok my wise sisters, I need some help. Today is day 3. I feel like ass.
The nurses and my onc said to wait on the anti nausea meds beause maybe I wouldn't need them. I didnt listen and have been on top of them since Monday night. I'm constipated and can't stomach food much today (yesterday was starving). Haven't thrown up. Just a generally ill feeling. I took milk of magnesia. Ive been taking colace.
Is this where I ride it out? Do I do something specific?
Today is my son's 6th birthday and I want to be ok for him. -
Jubby, someone wanted me to friend a woman on facebook who is most likely dying from recurrent ovarian cancer (this is like the 3rd or 4th go round for her) for inspiration. That was the last thing I wanted to do. If I wasn’t facing advanced localized BC, I would have been happy to friend her. But in this frame of mind?! All I want is the success stories and “you’re gonna make it through this with flying colors.” Sort of reminds me of a friend of mine when I told her I had been diagnosed with Hodgkin’s recurrence and was facing chemo. “Oh, I know a guy who had leukemia and went through chemo. He didn’t make it, though.” Thanks. Thank you very much.
Smethot, I can picture you drinking a cup of ass tea. Hysterical. Hmmm….what does ass taste like? …..and how does Smethot know that? Hmmmm……
Nicole503, “it looks like a coral reef around your neck. Friggin’ hysterical. Laughter is so hard to come by these days. I used to share these long-lasting belly laughs with my dad. He and I would laugh so hard and so long our stomach muscles would get sore and we’d be winded. He passed away 10/12/11. I thought I’d never laugh again. My Eucharistic minister comes by every couple of weeks and somehow, someway, she and I always end up laughing like I did with my dad. I appreciate the funny comments people make on the board. I need the laughs.
Martha33, will be thinking of you and praying for you. Best of luck, Sweetie. Here’s to minimal SEs and an eventless excursion to the bar.
Holly
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MandyNJ ~ I completely understand where you are at. Small frequent meals may help with the nausea. As everyone else has noted, protein is good. Do you have compazine? I added that to my anti nausea regimen with my last AC cycle and found it a helpful addition.
I have also found prilosec helpful for the GI side effects.
Glad you are taking colace and a laxative. Don't let the constipation get out of hand. It's a tough SE for sure.
There is some amount of "you just gotta ride it out". Distractions are helpful -- good sitcoms, especially.
I really really get wanting to be okay for your son's 6th birthday. Fake it 'til you make it is the best advice I have to offer. I have done a lot of that for my 10 yo daughter, who is a natural worrier.
Wishing you ease through this day, and and easier day tomorrow.
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Thanks Nicole. Yes, I have compazine. I was alternating between that and zofran (one of them every so many hours, and then the other one). But the pharmacist told me zofran was more powerful so my last few rounds I've only taken the zofran. Is that where I went wrong?
I've been taking the colace since Monday. Today was the first time I took milk of magnesia. -
Skigitl72 your post on depression has resonated with me. I think it's finally time to admit crying numerous times a day is just not normal nor is it helping me focus on getting better. Especially when I break out in tears while I'm talking to someone. That is just weird
). Thank you for putting that out there. I have decided to get some help from perhaps a little white pill and im going to venture into some alternative medicine. Acupuncture? Yoga? Meditation? All of the above? Basically I need to ban all these horrible tnbc statistics from my brain. Any time a stat creeps in, I'd like to retreat to my happy place
. Anyone have success with any of these methods?
On a neulasta note, my WBC was 45 this past round. Wtf?? Isn't that like almost 5 times what it should be? Maybe that is taking a toll on the old mood? Or maybe my immune system is superhuman at this point and can fight any disease!
Here's to all those getting treatment this week! Those of you on the every two week schedule...you are blowing through this! I've been at this since 1/10 and I am still waiting on my third treatment. While it seems to be going slow...I'll be 1/2 way done next week! Yippee!
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