TRIPLE POSITIVE GROUP
Comments
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kate - my MO did Neulasta pre-emptively, and I think many do, but some docs like to avoid Neulasta with taxanes because of the combined bone pain side effects, the cost and the possibility that it is not needed. Are you having a weekly blood draw - during the weeks between chemo infusions? The good news is that if your WBC tanks at the nadir a week or so after infusion your doc can start Neupogen and prophylactic antibiotics to increase your WBC mid-cycle, or just the antibiotics and give Neulasta 24 hours after your next infusion, since Neulasta has more sensitive timing limitations when given after chemo.
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Thanks geewhiz and SpecialK! I'm not sure about the mid-cycle blood draws--I'll ask her that tomorrow. I got the impression that they favor Neupogen anyway, given the Neulasta side effects. We shall see.
Another thing added to my list of things I never planned to think about: will I need a shot to boost my white count? I've always had a crazy-healthy immune system that I guess I took for granted!
In other news, if one more person says something to me about apricot kernels or cottage cheese with flax oil (or anything along those lines) being curative, I may lose my mind. I get that cancer, and its treatment, is scary. But "not believing" in chemo in the abstract is much, much different than having high-grade BC and wanting to live to see 40 and beyond. A colleague of mine wants to chat today, via phone--we've never talked on the phone before--and I just have this feeling that she's going to tell me about some cure that's too good to be true. I could be wrong. I hope I'm wrong. I've had it with well-meaning "you really don't need chemo" people. YES. I DO NEED CHEMO. And I also need to continue to eat healthy and exercise, which I've been doing for years. . . .
Sorry for the vent. But it had to come out.
kate
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kate - my MO did weekly CBC even with Neulasta, just to make sure it was indeed working. They did an instant read CBC, only took 10 minutes between the draw and results. It might be something to consider initially to see how your counts hold up. As far as the well-meaning folks who advise cottage cheese, coffee enemas, laetrile, or asparagus, etc. - tell them you appreciate their intentions but that you are an intelligent and informed patient and you have researched your options, spoken with your docs at length, and have determined that chemo and targeted therapies hold the best hope and treatment outcomes for your specific situation - offer to send them the statistics for the treatment you have chosen versus what they are recommending. If that doesn't make them stop, put them on ignore.
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Kate,
My MO was a Neulasta fan, but only during the Adriamycin/Cytoxan phase of my chemo. Despite my germy students, I only got sick once (it was during the Taxol/Herceptin/Perjeta phase), and that was from a stomach virus my kids brought home from school.
Yes, everyone knows the cure for cancer, and it's not chemo! I was at my grandmother's funeral in November, and one of my Mom's friends lectured me for over 45 minutes about some miracle product she'd seen advertised on TV! Ugh.
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When does the bone pain begin after a Neulasta shot and how long does it typically last. My mo wants to give me one after my infusion tomorrow.
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MMay, I never had bone pain after Neulasta; it's a common side effect, but not everyone gets it.
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MMay, I got the bone pain only once after the first Neulasta shot. It occurred about 2 to 3 days after the shot. The other Nulasta shots were all pain free once my body acclimated to it. I definitely took the Claritin with each injection though just to be on the safe side.
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MMay not everyone has the pain. Also the first one, if you do get pain is the worst. I had my shot on a Wednesday morning. Saturday and Sunday I couldn't even stand up straight because of the pain in my back. That was the first one. After that it wasn't so bad. I would take an Aleve to take the edge off. If you do decide to take something for it check with your oncologist. I didn't take narcotics because they make me nauseous. My MO OKed the Aleve.
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I never had any bone pain with Neulasta either. But I did take Claritin the day before, day of, and a couple days after the shot. My MO automatically gave me Neulasta during my AC treatment. My second MO had my blood drawn the day before my weekly Taxol/Herceptin/Perjeta and gave me Neupogen when needed. I've always been really healthy but I had to get neupogen before almost all my weekly treatments.
My mom and her husband were the only ones to lecture me about my treatment options. They thought I should just have surgery. I got emails from them from some quack websites saying chemo never cures so it shouldn't be done, women shouldn't do self breast exams because it causes undue stress when it doesn't really matter because I was probably going to die anyways. She also told me it was my fault I got BC because I took birth control. It's great when you have such a supportive mother! (Sense any sarcasm?
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Another suggestion I got about the neulasta shotwas to get it in the stomach. I'm not sure if that helped but I figured it couldn't hurt so why not.
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I did 6 rounds of TCHP - no neulasta shot. I never got sick during treatment, either. Blood counts stayed okay. Liver enzymes were got really wonky, and had them reduce the dosage at two infusions.
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I did not have bone pain from Neulasta, but did take Claritin (10mg loratidine) an hour prior to the injection and continued for several days at 24 hour intervals. I have a friend whose onc said to half the interval with Claritin and take it every 12 hours instead, but only do that if your onc advises it. I have seen and heard that taking Aleve, as lago said, is particularly helpful with this type of discomfort, more so than narcotics - which don't seem to work as well and can constipate. I did take some Tylenol and also took advantage of very warm bath/showers and found that this helped. One of the problems with Neulasta after a taxane chemo is that they both can cause bone pain, so it can be difficult to know which thing is causing it.
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Thanks everyone, so helpful. I'm hoping for the best. I can't take any NSAIDs due to blood thinner so I'll look at the Claritin and Tylenol if needed. It is nice to be prepared just in case.
wpmoon glad to hear you had a good experience besides the liver enzymes. 😄 and you look great!!
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neulasta also let it sit out for about 15-20 minutes before you get it. If its cold it will sting a little. I got mine at home. Husband shot me up in my belly.
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Some are now also receiving a Neulasta self-injector that is attached as you leave your chemo infusion, has a timer, and injects - you remove it and dispose of it. Especially good for those who have a commute to their center. Here is a link:
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Home from second chemo TCH. Felt good when I got home so I jumped on my bike and took a ride. Energy level from steroid I am sure. I will go tomorrow for Neulasta I had bone pain time last time I took my Claritin and 2 Advil but had to take Aleve to stop pain. It was not anunbearable pain just dull ache. I took it for five days after neulasta shot.
Mmay I hope your infusion goes well tomorrow.
The most advice I have gotten from well wishers about cancer treatment was to check out info on keeping my ph in balance. Thank goodness no one has told me what you have been told Mommato3.
Wpmoon glad you did so well with your treatments!
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Gretagirl, I love that you took a bike ride! I'm trying to muster the energy to take a walk. I was a bit constipated last night, so I succumbed and took a Senokot-S...which might have been ill-advised, as I had diarrhea all day. (We can talk about these things, right?) My stomach has felt settled for a few hours now, so as soon as my husband gets back from some errands, I'll go with him and the dog at 10 p.m. to traverse the neighborhood.
I was advised to inject the Neupogen in any subcutaneous area in my stomach, lower part of upper arms, or upper thighs. Something about the stomach area makes me squeamish, so my husband has been alternating upper thigh areas. I take the Neupogen out 15-30 minutes prior to injection. I haven't experienced much bone pain--only some localized pain at the point of injection. The shots each night have hurt a bit more as the days have progressed, though. First I suspected my husband was getting the med into my muscle, but now I believe it's the effect of subsequent days of injections. I'm counting down each of the doses...tonight was 5 down, 23 to go. My husband says he's going to be an expert by #27.
I'm on dose-dense AC and having CBC testing done every two weeks; blood draws will be done 2 days prior to infusions. I've been pretty leery about infection and have avoided crowds. I run a marketing company and have the freedom to work from home, which is convenient, if occasionally lonely. I was considering going out on an actual date with my husband on Saturday, but that will be at the nadir of my AC, so I think I have to come up with something a little less exciting.
Re: well-meaning people, I vent to my family members about the things I've been told. I have one very close friend I adore who keeps telling me, "Flax! Flax! Flax!" and sending me links to healthy sites. At the same time, this awesome girlfriend is my craziest pal...she drinks like a fish, eats poorly, and has, let's say, a somewhat unhealthy lifestyle in terms of other choices. I know her heart is in the right place bla bla bla but it still bugs the hell out of me when she lectures me about lifestyle.
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bone pain for me was 3-5 days, the clariton works, so use it if bone pain is bad, Hydrate, hydrate, hydrate, I can never emphasize this enough, the chemo goes to all the organs and they need the hydration along with all the cells in your body, drink drink drink. Clariton can start day before neulista shot and several after, I am actually still taking clariton because of the aches and pains from the arimadex, thinking this is keeping the aches at bay. Good luck gals
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JenPam I have an issue with constipation and took 4 Senokot S yesterday and finally had a small BM this morning. I am going to try taking Prunelax ciruelax today a friend recommended. I took a bottle of Mag Citrated last time and will not do that again!! Best of luck to in dealing with it!
Jerseygirl1927 I try to get 120 ounces a day. Most of it water some Gatorade. It's not easy but I try
I am headed to get Neulasta shortly!
Hope everyone has a great day!
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Gretagirl I found Metamucil works great but you must drink fluids. It softens the stool
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Magnesium.
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specialk I need advise! Had neoadjuvant chemo sx is scheduled sept 21 surgeon is going to do SNB I had pet done clean but ultrasound at biospy showed a node that was thickened..I want that node out! Surgeon said we will do ultrasound before surgery look for node then stick a wire in it so she knows to take it out..what if the node isn't showing up on ultrasound now due to the chemo?? I just feel very uncomfortable not knowing my stage and if there is still going to be cancer in my lymph nodes after surgery help!!
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Jen,
that Flax thing leapt out at me..I have a flax eating friend too who believes as long as she eats flax she will never "join the club"...I was a vegan before my second diagnoses and a vegetarian before my first..never ate flax then...but now..I just tell her about this from Dana Farber..any ER+ can use this at the flax pushing flacks.
http://www.dana-farber.org/Health-Library/Phytoestrogen-s-Role-in-Estrogen-Positive-Breast-Cancer-Patients.aspx
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stephmoen - tough situation - do you have no node issues at surgery and be worried, or still have an area of concern that you can put the marker in - and be worried. I'm not sure what the best scenario is. I would say that what was seen at US could have been anything, and a clean PET is a good sign because I would think anything big enough to see on US should be FDG avid on a PET. Your situation is exactly why SNB should be done with port placement for neo chemo folks
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ugh very annoying I almost want to take them all out but I know she won't do that she's very pro keeping lymphs in and I know it can cause issues taking a lot of lymphs out ..should I just let her do the SNB and hope that one of the1-3 lymphs she takes out was the one on the ultrasound? I wish I was more proactive before chemo and demanded a SNB I thought a pet was as accurate but it's no
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Stephmoen --
Is there any way a surgical marker could be inserted in the questionable node? I wish someone had placed a marker in my compromised node because all of my nodes appeared clear on the post-chemo MRI and PET scan. So, my surgeon ended up taking out all of the Levels I and II nodes (20 in total). Fortunately, I haven't contracted lymphedema....yet.
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that's what the plan is but they haven't done an uktrasound since before chemo so I'm not sure if it will even show up..my surgeon seems to believe if it doesn't the. Either it didn't have cancer to begin with or the chemo killed it so there's no need for them all to come out I'm just uncomfortable with the thought of leaving anything in me that ever contained cancer
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Stephmoen,
Are you scheduled for radiation? If so, that might clean up any stray cancer cells that are lurking in the breast/node area.
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no not as of right now I'm not they say depending on what the SNB shows I read an article saying DFS was higher in people who recieved radiation even without positive lymoh nodes but aggressive tumors I'm going to show them this article not that I'm begging for radiation but I don't want this to come back EVER
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Ashla,
Thank you! Your name is one i always look for. I would so like a gathering of the crew. I am thinking of hot and cold running maid service and Cabana Boys.
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