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Blownaway. Thanks for pointing out Lala1's post to us.
SpecialK. In the link you posted about aspirin, they mentioned 'regular aspirin' but didn't mention the dose, do you think they are talking about baby aspirin? May I ask if you regularly take aspirin and if so, do you take it every day or several times a week? Very interesting article. Thanks for sharing.
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Thanks, HapB! Thanks, all. Yesterday was chemo session 1 of 12. I got labs drawn (all fine except slightly elevated glucose--I ate lightly and didn't fast). Then I got a pre-chemo bag of decadron, Benadryl, and Pepcid, with 8 mg of Zofran tablets (they are "out of stock" on IV Zofran, but this was fine). Then I was there for 5 more hours getting my first Herceptin and then Taxol. It was a long day with the drive--about 9 hours. I felt bad for DH because the guest chairs are very uncomfortable--hard and like the worst waiting room chairs you can imagine. No major side effects yet. I can't taste much today, and stomach is a little jumpy (not bad). I take oral Zofran every 8 hours today and tomorrow. The nurse said to expect to feel worse tomorrow and Friday, so I'm planning for that. Working from home today and even had to take some work calls/emails while in the chair yesterday (eyeroll).
The worst part for my strongly introverted self was how OPEN everything was. The infusion room has 6 pods of 6 chairs (one nurses center per 2 pods) each right next to each other (private rooms for people getting stuff like bone marrow, which is good). Chemo patients have dedicated bathrooms. But at any given point without the curtain partially pulled, I could see so many people. Nobody looked at each other. Some people were alone; others had like 4 family members. So--it wasn't that anyone bothered *me*, it's just that I felt like I was on "display" in a time of vulnerability. I gasped for DH to pull the curtain before I had a panic attack (this was before anything started). Then, it was fine. I could see the nurse's station and like 2 other people. There were several consoles in the pods with TVs and such; I watched movies on my iPad. I probably had to get up and pee like 6 times because I was glugging so much water. Except for all the various beeping, it was pretty quiet. They had a counter where you were allowed (according to sign) "ONE snack and ONE drink per visit." I guess that they've had problems with non-patients eating a lot?
They are building a completely new center, which I hope I never have to use, lol. Now that I know I can pull the curtain and have some privacy, it'll be better for me. The port worked great. Definitely a good decision for me.
I had mild tingling and muscle cramps. Nothing bad. Last night, I took Benadryl and slept okay. I think the steroids don't make me as jittery because I've had them in the past for my spinal issues, but my next sessions are later in the day, so this might be an issue as time goes on.
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tld - Neulasta can't be given to someone receiving weekly chemo who has a dropping WBC, the dosing can't be done that frequently - it is given for dose dense or 21-day regimens, but Neupogen can be as it is in smaller daily doses. I don't know that there is a hard and fast number on your counts - this is subjective, but I think it would need to drop more before your oncologist considers stopping chemo. The range for WBC is roughly 4-10, and that is actually developed for adult males. Women often fall at the lower end of blood counts. I just looked at my CBCs and I have had several WBC lower than 4 long after chemo, as recently as 2017 I had a 3.9. Also, it is not just your WBC number, but also your neutrophils, the ANC on your CBC report that is important, that range is 1.5-6.5. Neupogen should be considered when, and if, you get low enough that your MO is concerned so you can continue on schedule. In the meantime, wash your hands - a lot, avoid raw food, stay out of crowds if possible, to avoid an opportunistic infection. Your MO may decide to put you on a prophy antibiotic as a precaution if Neupogen is not used.
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moody - yes, I believe it is 81mg aspirin, also referred to as low dose or baby aspirin. That is what my MO advised, more than that dose can cause stomach issues, and then you have developed a new problem rather than potentially solving one! I do have to use the enteric coated as even a chewable baby aspirin bothered my stomach - on the first dose. I do take aspirin daily - I believe one of the study stats was that the highest percentage of recurrence prevention came from daily use, a slightly lower percentage from 3-5 days a week.
astyanax - a number of people experience allergic reactions during infusion so make sure the nurses can easily keep an eye on you - my center was open as well, you get used to it, but remember that safety is one of the main reasons for this design. Also, your glucose may have been a little high if you started any oral steroids prior to this first infusion. Mine remained high all during chemo.
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No worries--I will still right in line of sight of the nurses' station. I went in with some pollen "sniffles" and slight coughs, and got a concerned look once from across the room from a nurse, but she smiled and nodded when I said "Pollen." It's like a carpet where we live. It's part of the awful summers down here.
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McDougall is a scam artist taking advantage of people by, once again, claiming that diet cures cancer and advocates against things like radiation, chemotherapy . People definitely shouldn't follow anything he says.
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Hello Everyone,
When you choose a doctor or health facility (for traditional or complementary care) it's important to find someone and some place who will be a valued partner in your care. We encourage all members to do their homework, consult with your current treatment team, check qualifications, talk with the office staff and/or the doctor on the phone or schedule a face-to-face visit. These are individual treatment and lifestyle decisions.
Warmly,
The Mods
Please note that Breastcancer.org does NOT recommend or endorse alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment.
Healthy, balanced diet and lifestyle practices are encouraged as complementary to treatment. Complementary medicine refers to treatments that are used WITH standard treatment.
Note: Before going to Dr. McDougall, or other similar retreats, please check in with your treatment team, as they often prescribe to a treatment philosophy.
Hap, and others, reading this web page may help you to understand Dr. McDougall's philosophy to breast cancer and treatment, which will be certainly discussed if you attend the retreat: https://www.drmcdougall.com/misc/2017nl/sep/breast....
**Breastcancer.org does not recommend or endorse McDougall's Medicine of Less is More**
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astyanax - when I was doing taxol I sucked on iceblocks during the infusion and found my taste didn't change too much. Still had a icky taste, but not as bad as when I didn't. It might help
Only suck on an iceblock during the actual taxol infusion though. -
HapB, the particular retreat example that you posted at Dr. McDougall's facility is based on a treatment philosophy, rather than simply learning how to live a healthy lifestyle. This discussion may be better in the Alternative Therapy forum. Thank you.
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According to Wikipedia, the McDougall Program "features a low-fat, starch-based diet." Whether that constitutes excellent nutrition or healthy meals is up to each of us to decide. I myself try to limit starchy foods and am not afraid of healthy fats; more of a Mediterranean diet.
Hap - You often post statements of fact that are actually your opinions. And then become defensive when anyone disagrees with you. You are absolutely entitled to your opinions, but you should identify them as such. For example, "Here is a program that I think might provide useful info re healthy diet."
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Trisha-Anne--would ice "chips" do the same, you think? They did have some available there. I'll sure give it a try. Thanks!
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Astyanax, ice chips do the same job. I usually took my own ice blocks though, because the ice chips don't last as long and you go through a lot. I also felt guilty asking the nurses to continually fill my cup with ice chips - I usually sent my hubby home after he'd dropped me off, as it was pretty boring for him, and I felt better just dozing or reading on my own. I would put the iceblocks into a cooler bag with ice packs to keep them frozen, then I didn't feel guilty asking for more ice every 10 minutes or so!
I really hope it helps you - I did find it lessened the horrible taste, and what I did have didn't seem to last as long.
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According to HapB's WCRI link, being obese or overweight in your early adulthood actually decreases risk of breast cancer. Though I guess being obese later in life is bad? And going from skinny to fat as you get older is apparently also bad. Makes me wonder what is cause and what is just correlation.
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I think I have hit the wall with the constant drum beat of plant based diet is the only best, better, sensible etc etc option to preventing BC recurrence. It makes me want to throw a big porterhouse on the grill, dive into a big wedge salad with extra blue cheese, wash it down with a nice Bordeaux, drink a big triple espresso and top it off with a dark chocolate tort. Some days all I can think is BC takes all the fun out of food and beverage. I feel like going rogue. When I get up in the morning and make that organic protein/fruit/unsweetened almond milk smoothie with hemp, chia, and pumpkin seeds, I think to myself, BACON and EGGS! And now back to our regularly scheduled program. I think I am going to take off my halo and live a little. Hugs to all.
P.S. If you are currently going through heavy chemo, eat what you can tolerate and ignore my post. Hugs
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Suburbs - Cheers! Red wine (normally my beverage of choice) still tastes a little acidic to me one month post-chemo, but I will join you for that meal and raise a glass of rose.
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Suburbs You can come to my house for dinner. DH gets his birthday grill on Friday and I'll slap a steak with bacon crumbles on it for you. I don't know what foods are best. We eat real foods avoiding white, starchy carbs, and gluten. I eat an egg every day. My HLD is up 32 points. Go figure. I deeply respect those of you that can go organic and stay focused on a different lifestyle.
astyanax66 ... Great news, you got your first one down! Remember as SpecialK says to keep hydrating. I urge you to move and get that chemo thru your body. Walk or do something. I selected a facility where I would have privacy. I understand your reaction.
All, I met with my mew Oncologist today. It went GREAT. A few admin bumps getting me set up as a new patient but the doctor is what matters most to me. I am feeling good about this relationship. I felt good in that he understood what cancers I had and supported the choices I have made.
Vicky
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https://pinklotus.com/elements/breasts-the-owners-...u
This link was posted on the "Bottle of Tamoxifen" forum. Someone's doctor wrote it (excerpt from her book). Don't know if it's worth reading or BS. I'm in the steak and red wine camp in the evening but live a healthy lifestyle during the day. My good intentions fall apart the closer to happy hour it gets
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HapB - I actually looked into places like this before I got cancer. There's a place in AZ called Canyon Ranch that sounds like what you're looking for. Unfortunately, its outrageously expensive. I've also considered going to True North which sounds kind of like what you're looking for, but more medically focused. They also do supervised fasting and commonly work with cancer patients. I don't know that they have any kind of anti-chemo agenda, if they do they don't advertise it on their webpage. I may do True North once all my treatment is over. Boy is my husband going to love that vacation!
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Suburbs- you made me laugh hard, thank you! Truth be known I do eat the way you wrote (for the most part) as I went Paleo/Primal a few years ago...lost a ton of weight, yup bacon & eggs can do that...no toast of course lol! When I went Paleo, like Scarlett O’Hara I shouted to the rooftops “I’ll never go hungry again!!!”
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magari - I still have issues with red wine tasting off to me, but am ok with white. I drink wine so occasionally that it is not a big deal, but it is interesting that this has persisted for this long after chemo.
astyanax - I brought a big Tervis tumbler full of ice chips from home, and it lsted through the Taxotere infusion. Afterward I used it to fill up with water from the dispenser at the center, but of course that meant I made at least 4 trips to the bathroom because of the IV fluids and extra water, lol! For chemo#5 we had a tornado just before my apt, and the power was out. I always had the first apt of the day due to the length of infusion day because I always saw my Mo for an appt first. Those of us who had morning appts received our infusions because the IV pumps still had battery power, everyone after noon was turned away. The problem was that the windowless bathroom was pitch black inside, so the nurses had to crack the door and shine a flashlight in - ridiculous, but funny!
hap - I have not seen anyone recommend the type of supplements in the links on this thread. From what I have seen, those of us who have discussed supplementation (all of mine have been approved by my oncologist) have exchanged information about the types of supplements you can get at the drugstore or grocery store - regular letter vitamins or minerals, amino acids, protein powder, etc., certainly not any quack "cure cancer" supplements such as the articles mention.
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hap - as I said, my oncologist did approve all supplements I took during chemo, and the ones I take now. As a matter of fact he asked me for a list of what I take as a reference for his other patients. He has never asked to see the bottles, and we have never discussed brands - but I am not taking anything unusual or exotic. The last time we discussed supplements I posted this link regarding supplement oversight, just in case anyone wants to look at it:
Are you taking a generic aromatase inhibitor? A number of the brands commonly taken here in the US, and commented on by many BCO members over the time I have been here, are made in other countries as well - Teva and Watson - Israel, Accord, Sun, Dr. Reddy Labs - India. China supplies a number of the ingredients in many American made medications. The FDA has not been as diligent as they could be in making sure that these foreign-made drugs actually contain accurate levels of medication or safe fillers and additives - this has been in the news, and inspections of the foreign manufacturing facilities has not been consistent, it appears that as of last year about a third of foreign manufacturers had not been FDA inspected - and these drugs are the ones being prescribed by our physicians. It is a bit worrisome.
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After a bunch of research from links on this thread and and on the BC.org front page, I found a list of amino acids that are recommended for preventing neuropathy when taken with taxol. When I asked my MO about them, he said, "oh, aren't those recommended in the paperwork we give you? Yes, please do take them!" and they weren't in the paperwork. So you do have to be your own advocate for sure in this mess. No neuropathy yet.
And I haven't been commenting on diet suggestions etc, mostly because I generally already followed a plant-based diet. I stopped drinking except for an occaisonnal beer- wine mostly tastes too acidic, and I was already off sugar, "white food," and any meat except locally grown and sourced. Then a friend who is a salmon fisherman in Bristol Bay found out about my diagnosis and sent a huge box of frozen salmon- joy joy! But I have had many so-called friends with good intentions bring books and get on their soap boxes about the raw diets and so on, which was terribly off-putting. My onc nurse smiled and said, "eat what your body wants. It knows."
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I used to really love this thread. Honestly lately its bumming me out, which bums me out!
I had a small scare today. I went for my diagnostic mammogram. The radiologist said she thought she saw some calcifications near my chest wall on the left breast. She took a zillion extra pictures. My boob kills right now.
She ultimately gave me a birad 2, but noted that there were several calcifications that "appeared benign" with no significant changes. But that means there were changes right? All of my past mammos just said "no changes see ya next year".
Chest wall calcifications are hard to detect right? It felt like she was having trouble getting a good clean inage. Luckily I see MO tomorrow and will ask her to look at the images too. I'm sure it's fine but the last two years i walked away happy. This time i feel a little anxious and unnerved...
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Oh, Tresjoli2, that stinks! I think asking the MO's opinion is a good idea. Maybe these are just normal calcifications that are not new, but just are more visible? I do hope so. Please let us know what you learn!
Dee
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tres - I would ask your BS about the calcifications since they are the breast specialists, but my understanding is that scattered is ok, linear less so, and size matters. Calcifications are common - they are essentially calcium deposits that can come from a number of possibilities that are benign, occur in half of women by the onset of menopause, and common in breast cancer patients post-lumpectomy since "trauma" like surgery or rads can also cause them. Knowing your breast cancer history I wouldn't think a rad would give a birad2 if anything were really suspicious. Is the machine a newer or different one that may image more clearly and thus show something that may have been there before but not seen?
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Hey special. I dont think the machine is new. I think I am just having an irrational emotional reaction to "hey...I think I see something" ....(image image image, pause, image image image, pause, image image image). "Nah...I dont see anything. See you in a year." I'm sure she was being thorough and careful because of my former diagnosis. But honestly it was another full hour of imaging. My rational mind says yay birad 2 woohoo celebrate with some ice cream. But my irrational mind says...what did she think she saw,? Why so many extra pictures? Chest wall, what do you mean chest wall? Why did she write "appears" normal? I had calcs when I was diagnosed. Just my mind running away on me I am sure. I hate this disease so much.
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You really can't fix stupid. I hope your technician NEVER has to emotionally understand what her statement meant otherwise she would be in our club.
I read somewhere that nurses and technicians apologize the most to other women after their breast cancer diagnosis.
I would, after your get final results from your doctor, contact the Ombudsman or Human Resources and recommend some sensitivity training for the technician.
Vicky
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tresjoli, I'm sure it's nothing. I really think mammo technicians should go to training on sympathy. Since i was diagnosed I've met some really rude ones.
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Here's a third (or fourth) on the "you guys need to respect us" re: mammography technicians and ladies with history of BC. This whole poopstorm began on my diagnostic followup to my annual screen--and the lady was *very* upset with me for getting a copy *from my PCP* (she always sends me a copy) of my report! She told me, "Reading those doesn't do anything but scare you!" Oooof. My PCP likes to go over everything with me--that's why I have her. She always gives me copies, of any tests.
Well, that was the place where the off-site radiologist missed this mess (he was looking at something totally benign) and gave the technician bad instructions.
I couldn't have asked for nicer, more respectful technicians where I went for the second opinion and eventual treatment. They'd clearly had training on saying the "proper" thing. "The radiologist would like for us to do a spot compression on an area where she'd like a better image. Is that okay with you? We're sorry this is going to be a bit tight, but it should just be for a moment." During the biopsy, she kept saying how well I was doing, and when the guidewires were inserted, she said, "I'm glad I could be here with you today--I like having continuous contact with my patients who have to undergo surgery. I care about you." So, rather than focusing on the doofus, I try to remember how awesome this lady was.
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Dear Trèsjoli, I've been reading - or better said - studying hundreds of posts of TP women mainly here on these boards, and I am pretty sure there is nothing you'll have to worry about. Thinking of you. G
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