Anyone Starting Chemo in June 2016

ClarkBlue · July 2016

CarolAG - like you I had 1 lymph node removed. I was doing some research today and it seems that edema is a SE of taxotere and from the other posts on this forum, it begins after the second infusion and gets progressively worse, which has been my experience. After second infusion it was there but went away pretty quickly. It started again about a week after my third infusion and the arm swelling is still there, but the ankles are touch and go... It doesn't seem to be lymphodema... I don't have the classic symptoms and since I've got swelling in other areas I'm going to wait it out. I think I may ask for a water pill this Thursday when I'm in for my next infusion. I called last week and spoke to the chemo nurse and she didn't want to get me on water pills yet as I was thinking it was self-induced due to all the salt I was eating because I couldn't taste anything lol.

I've read a bit about eating bananas and upping my potassium to help - anyone know if this is true?

REV: totes agree on the starches. I forgot about avocado...yes yes yes! I am making a delicious meal as we speak... corn tortillas topped with scrambled eggs, then black beans/lime juice, then pico de gallo, then sliced avocado. Do you have an egg alternative? I'll bet tofu would be great! (I've read that all soy is not bad for us so I eat tofu occasionally - probably 1-2x/month).

-Keely

pepper43 · July 2016

Hope everyone is having a lovely weekend! Finally have some time to catch up. My urologist appointment has been set up for this coming Friday- I'll need to run to the hospital where I had CT scan taken for a disk of it so that urologist can pull it up. Curious to see if he'll have any better insight as to whether mass is benign or malignant….will keep you posted!

Stupid question alert: what is cording?

Dolly- sorry about your cc experience last go round. Just think though- you're getting to the finish line and your hair looks amazing. ;-) You DO have to make that date happen so you can let us all know how it went!

Moondust- boo hiss to insurance issues. A month in and we've hit our individual out-of-pocket maximum for me (that's the good news). Bad news is I'm sure to get a bill here or there that I'll need to dispute (still waiting on word back from insurance company on denial for the contracted company an in-network facility used to read my initial screening mammogram). As if we don't have enough to deal with!!

Labscientist- hoping the nosebleeds don't make another appearance. I've done doc review contract work for litigation but have had to turn it down during chemo. There is ALWAYS someone sick there sneezing all over everything and I'm paranoid of catching something- here at home, I've already got a bit of sore throat/cough that MO put me on antibiotics for. I'm sure with school coming up for kids this won't be the last time so I went ahead and bought some expensive probiotics to hopefully keep my gut healthy. We shall see!!! I'll be on taxol in about 5 more weeks- will need to order some special ice accoutrements as I don't want to suffer from peripheral neuropathy- what did you get? Are they working? Hoping your weekend trip went well!

boobsbgone- Ah, family. The dysfunction can run high. Sorry your dad was being a poop. And kudos for standing up for yourself!!! Stella is loving the pizza hat- she was sitting drawing last night just in her underwear and the pizza hat- it was cracking me up! Oh my- so sorry about doggy sickness…but yay on the foster kitty adoption. I think you're going to have to definitely give protein drinks a try- water them down as much as possible if the thickness is what bothers you. You can do drinks with half a scoop too to keep the consistency more liquid/less thick.

revnet- UGH!!!! Insurance companies are no fun. Keep on fighting girl. It's a shame they have to put you through more crap to get stuff paid. How did your infusion go???

Clarkblue- I'll be talking more in-depth with oncologist about ovary removal at some point - definitely leaning more towards it after meeting a woman in infusion room last session whom had already survived breast cancer and is now fighting a stage IV ovarian cancer diagnosis. She told me she wished she'd had them removed back during breast cancer. Ohhhhh about the chemodiva! If I had known I would have saved mine!!!

Coffee-lover- looking great for round #3! I'll be doing my own third round on Thursday. Crossing fingers for no big impact kind of SEs.

bbbb- Welcome to the bald club!!!!! I've become really self-conscious about it now that the hair is falling out and I look less like a fierce punk chick with a buzzcut and more like a lost baby bird. I've discovered chemo beanies and am now obsessed. Will ask my oncologist for a cranial prosthetic prescription so I can get a nice Jon Renau wig like a couple of the other ladies here. ;-)

llroseworld- See if your cancer center has a financial coordinator- they can find stuff for your. One of the grants we've received is from the Patient Assistance Foundation. We'll also be getting a Neulasta co-pay card. Together, I think they'll save us a little over $1000 out of pocket. I may start google researching for other opportunities.

lilyp- you look stunning! And I love The English Beat shirt!!!! I'll have my LGFB workshop Monday morning- and I hope we're not landed with a "professional makeup artist" like yours. ;-) But hey, you still got great makeup! I'm excited for that. I love free stuff. Keep it up with the push-ups! I'm actually going to try to use my personal training certification and come up with a simple, short strength training routine for arms. I don't think I have the energy/stamina for one of the programs I have (the workouts are typically 45-60 minutes and involve multiple sets).

Acie- did you find any good scarf tying videos??? I'm lacking the girly tie things up in a pretty way gene. Let's be honest- most days I am a hot mess. When is your LGFB workshop?

Heathet- I just love your smile. So pretty! How was the goulash? A neighbor brought a homemade chicken pot pie on thursday night and I thought I had died and gone to heaven. It was just that good.

bbbb- I think we need to make a custom t-shirt that reads "NO I AM NOT MISSING LIFE BECAUSE OF THIS STUPID CANCER!" Got a pic of you in the wig? We want to see!

CarolAG- they saw a few weird things on PET scan- something behind my tonsils (which oncologist maybe thought was just irritation/inflammation so I haven't seen anyone about it), a cyst on left ovary that looked incidental to menstrual cycle and a mass in the kidney. Oncologist wanted a CT scan done for a closer look. Hubby reminded me of bright side- if I hadn't had bc caught by mammogram, this now 6.1 cm in my right kidney could have become something much, much scarier- if it is cancer, it's stage 1- thankfully it hasn't spread anywhere else.

Heathet · July 2016

boobsBgone- try some protein shakes to add a few calories back in. I also get organic keflir whole milk - it's good tasting - lots of probiotics and calories! I like smearing avocados on my toast with eggs but try it with an egg substitute. I some foods aren't as good for us as others, but durning chemo I just try to eat what I'm craving. Sometimes that means cookies or pudding, other times cereal an other time healthy cooked meals. Follow your stomach, take nausea medication maybe with some Prilosec. I usually take my nausea meds every 4 to 6 hours just to keep that feeling at bay. Today I'm definitely not feeling hungry - forced down eggs this morning and a protein shake later. Hopefully later it will come back . AND a completely different note I'm losing my eyebrows!!!!!!

Moondust · July 2016

I'm not a dietician but I'm in the process of getting a nutrition certification from Precision Nutrition, and it's a subject I'm very keen on. When I read questions about nutrition I'll post what I know.

So what about potassium? Potassium helps control water retention and blood pressure, since it counterbalances the sodium that most of us get in excess. But potassium is one of the few things we can't get effectively in a supplement or pill. The FDA has set the daily requirement of potassium at 4700 mg! Yes, that's right - 4700! Unless you increase the potassium-rich foods in your diet, you won't even get close. We have all been conditioned to think bananas when potassium is mentioned, yet a large banana only has ten percent of our daily potassium requirement and 120 calories! Here are some better sources of potassium:

Winter squash, cubed, 1 cup, cooked: 896 mg.
Sweet potato, medium, baked with skin: 694 mg.
Potato, medium, baked with skin: 610 mg.
White beans, canned, drained, half cup: 595 mg.
Yogurt, fat-free, 1 cup: 579 mg.

Other good sources are avocado, kidney or pinto beans, fish, beet greens, spinach and other dark leafy greens, lentils, and milk. The foods with the highest potassium per calorie are mushrooms and celery.

We all need to pay attention to our minerals and vitamins as we are going through our chemo journey, and beyond! When you are young, you tend to get away with a lot of nutrient "micro-deficits", which means you are not really getting enough but you continue to function in a fairly normal manner. But as the years go by, these small deficits catch up to us and our health goes slowly downhill. And this is WITHOUT cancer! Get serious about your diet now, not later. No matter what your chosen eating style, vegetables are a common theme and a huge key to health!

bbbb · July 2016

Moondust - I appreciate the info in nutrition! I am struggling to try to eat well and your posts helps me - heading to the grocery story! What is your opinion of milk? Im confused! I am er and pr positive and I know there is a concern with hormones, I love milk but have not been drinking it because of problem with the big D but now that has finally resolved just three days before my next infusion!

Pepper - I have been told by my wonderful daughter that I look like Darth Vader! Don't know how accurate that is as I have never watched Star Wars but It does look pretty pitiful! My younger daughter and husband returned from church trip today and I was afraid my daughter would freak out when she saw my shaved head but she was ok. I think husband is taking it harder because now I actually look "sick" - really the buzz cut is awful! It will pass and he will be ok. He did like the wig and took me out to lunch sporting it! Still trying to get used to how I look in it and yes I will post pic as soon as I can! So glad you got appointment soon with urologist - I love your positive attitude and your husband being supportive - yes the news is not good but the sooner you know about it the faster you can get it cured! I love the t-shirt idea - I used to call the chemo stupid but then I realized the chemo is doing the job of killing the STUPID cancer!

Clark Blue - regarding ovary removal - last visit with MO we discussed this since I am taking Zoladex to put me into menopause and they did find a large cyst in/around my uterus during all the screenings. He suggested just getting it all gone and I am seriously considering it. We will talk more about it including pro/cons when I am done with radiation in October (I think) !

Moondust · July 2016

bbbb, about milk: I drink milk in moderation and consume greek yogurt every day. I am a big fan of Monica Reinagel, the Nutrition Diva. She has been doing a fabulous nutrition podcast for 8 or 9 years, which I highly recommend. She is the most evidence-based internet nutritionist out there and I really trust what she says. Here is what she recently said about milk and hormones.

begin quote "Does Dairy Promote Breast Cancer? Some worry that the hormones in cow's milk could cause health problems in humans. People have suggested that estrogen in cow's milk might promote the growth of hormone-sensitive cancers such as breast or ovarian cancer, for example. ...

if your primary reason for avoiding dairy is concern over hormones, let me share what I've uncovered on this front. The amount of hormones in milk is tiny compared to what's already in your body. Guys, your bodies produce about 6,000 times as much estrogen every day as you'd get in a glass of whole milk. Ladies, your bodies are producing 28,000 times that much. Compared to what your own body pumps out, the amount of estrogen you're exposed to from dairy products is far too little to have any physiological effect. If drinking milk could raise your estrogen levels, we could expect it to be useful in treating symptoms of menopause. Ironically, soymilk may be more effective than cow's milk in beating hot flashes. ...

There's no clear link between intake of dairy products and increased risk of breast or ovarian cancer. Some people have pointed out that breast cancer rates are lower in cultures or countries where dairy is not commonly consumed. But there are so many other differences between these populations that it's impossible to say that the difference in cancer risk—or any other difference, for that matter—is due to the difference in dairy intake.

When we compare people from the same country and culture, those who drink the most milk don't have a higher incidence of breast cancer than those who drink the least. In fact, several studies have found a modest protective effect." end quote

You can email Monica with any questions related to nutrition and cancer. Feel free to tell her you are in a chemo forum with Alice. You can send an email to monica at nutritionovereasy.com or post the question on her Nutrition Diva facebook page.

Acie · July 2016

pepper - this is the scarf tying technique I have been using most. It's easy and feminine. I use long scarves so I actually wrap mine sound and tie at the nape of my neck instead of on top of my head like she does. I think it looks more like a bun this way too. I have been able to repurpose some of my fashion scarves and even a wrap I use at the beach. It all depends on with width and weigh of the fabric.

Hope you all enjoy. Any other tips are appreciated.

The eyebrow video as great BTW.

Now I need to practice with my fake eyelashes.

Here is my result using this technique. This scarf is very big but lightweight. I have to double then fold into the triangle.

boobsBgone · July 2016

Moondust: thank you for the nutrition information. very helpful. i will try the protein shakes on my good day.

Heathet: I do try to listen to what my body wants to eat. found I can also tolerate goldfish crackers, however tostitos chips are not a good idea! go figure. sorry about your eyebrows. I am still on the retention side for them. i really hope to keep them.

on another side note, finally felt better today. but the down side - my oldest dog 12 year old Grayce died today - fluid around the heart due to cancer. I really hate that word. So far, lost my oldest dog in Jan, one of my cats in March and now my second dog. I asked my old dog left (10 years old - Tayla) to please hang out with us a few more years. She has never been alone so we are worried about her. good thing i am home a lot!

I just needed some (virtual) hugs today. having trouble sleeping since I keep crying. how much can one person handle? I know Grayce (aka Lulu) is at rest now and playing with her big sister no longer in pain. She has all the tennis balls she needs now!

(thank you for listening)

may tomorrow shine bright with cherished memories and creating of new ones.

Heathet · July 2016

boobsBgone - sending you BIG HUGS! I'm so sorry to about the loss of your beloved dog Grayce.

ClarkBlue · July 2016

Moon - THANK YOU!!! I love all of the foods you listed and actually ate several of them yesterday. I was conscious about keeping my feet up and it seemed to help. I appreciate your input very much!!

Boobs - I'm so sorry about your loss... pets can be such a big part of our families and their loss is just as great. :-(

Acie - love the scarves! I am a fan as well - the wigs just aren't working out for me. I have embraced what I have to work with lol. Can't wait for my new beanies to arrive tomorrow!!

I'm so glad to see so many of us living as normal lives as we can... it's so important!! My husband told me yesterday that I really need to try and push through my depressed/tired times and get out - he says he sees such a big difference in me. I know he's right... but also I know that it's easier said that done. Maybe I will make a point to do one thing every day and start there...even if it's just walking around the block when I get home from work. Baby steps!!

I had an appt with gyn Friday and learned all about the procedure for removing my ovaries and got her thoughts on all of it. I had a great conversation with a friend last night too that was an interesting unbiased one... the whole ovary removal issue and SEs are SO scary for me being so young - I am 46 and have a lot of living to do... Quality of life is such an important thing for me... but so is staying alive. I guess I need to have a conversation with my MO and fincd out what the statistical recurrence/survival difference is for me and my situation between the Tamoxifen and ovary removal w/AI. At this point I just don't know how aggressive to be - I feel like all of this is already SO aggressive for my situation, that maybe Tamoxifen really is the way to go? That maybe I just allow my body to naturally go into menopause while on Tamoxifen... The gyn said she has seen A LOT of women have uterine issues due to the Tamoxifen, but never any cancer - which is what I've read as well. Sadly my options are both pretty shitty. Either go on Tamoxifen and risk having to have an hysterectomy down the road, or have my ovaries removed and risk painful sex, joint pain, osteoporosis, heart problems and faster aging. UGH...

-Keely

KNardo88 · July 2016

Keely,

I know how hard the decision is. It really is unbelievable how much changes when we lose our ovaries, and the impact they make on our whole bodies. Being BRCA1, I need to have mine out by 35... So, with a little bit of luck, Hopefully after 5 years on Tamoxifen and after giving birth to two of my frozen embryos in one fell swoop ill have them removed right on "schedule"... I'm being monitored for ovarian cancer through Bloodwork and ultrasounds every 6months til then, on top of the breast cancer stuff so I have a long life of doctors and monitoring ahead but my goal in this is exactly that--- a long life. We can do it! My thoughts are with you

KNardo88 · July 2016

boobsbgone, I'm so sorry. My heart breaks for your loss of Grayce... Pets are so difficult to lose, I wish I had the right words of comfort at this time but just know that I am thinking of you and praying for you... Think of Grayce as one more guardian angel to bring you comfort no matter what

krekre · July 2016

Hey everyone – been gone a while. I apologize ahead if I'm responding to old stuff!

KNardo88 – I hear you 100%. I've purposefully avoided statistics because I know no matter what they say, I'll go the other direction. (Example, there's a super high chance everything will be fine. Yeah, sure but there was a super low chance I would get this in the first place.) Not helpful thinking, I know. For some reason people lately have been spouting statistics at me. And last week, I met my daughter's classmate's mom. She was Stage 1A in early 2015. Today she is stage 4. She went from Stage 1 to Stage 4 WHILE getting treated. I've been struggling with being positive ever since then. She's one of the women on the wrong side of the statistics.

boobsBgone – thanks for the advice about the hair (you gave it to me way back on July 7th). I didn't make it until Saturday. Shaved it off on Thursday after many tears. Been walking around bald since then. Decided not to do scarves, etc. because then there is a 50% chance people will think Bad Fashion Choice rather than cancer. I don't even know why I care. But I do. I seem to be getting sores on my head so not sure how long I can avoid scarves and such.

lilyp6 – I took my wig to a hairstylist. It's better now. Just terribly hot in Hawaii. And I still feel like a phony wearing it. But I will keep trying.

Moondust – I'm guessing you can't get a new MO? I love mine and I think it makes a world of difference. I'm a little confused as it seems everyone sees their MO so infrequently. I see mine weekly.

jenisis1975… - I have the same treatment as you and I started losing my hair on day 10. Just a few strands when I run my hands through it. A week later it was clumps. Couldn't stand the thought of losing it like that in the shower, so just shaved it off. Still itchy but easier to deal with. (BTW, I'm a week ahead of you. I started on June 20th. Just had my 2nd infusion on July 11th. My next one is August 1.)

Pepper – I'm so sorry about your news. Sending you positive vibes.

Has anyone gotten mouth sores? I got them day 10 after first chemo. I chewed on ice during my taxotere but the sores popped up under my tongue and under my upper lip. (It swelled and I looked a little lopsided for a few days.) And I swished with biotene every day. 2nd treatment I tried shoving ice up under my upper lip during taxotere. But it's day 7 and I feel the inside of my mouth getting tender again. This time thought I've been swishing with baking soda & water every day twice a day. Any advice would be GREATLY appreciated!

I'm in the beginning stages of this whole thing. I haven't even decided what kind of surgery I'm going to have yet. I still feel overwhelmed learning about BC and chemo. Now I need to start thinking about lumpectomy vs. mastectomy, and radiation too. So, overwhelming.

lilyp6 · July 2016

Y'all, I am thrilled to say that I managed to put on a pair of false eyelashes today!

Labscientist: Great info about the Taxol. I'm not experiencing numbness or tingling in my hands/feet yet, but they do ache, like the circulation is off. I haven't done any icing, and don't think I want to go there. I will mention it to my chemo nurses, though.

bbbb: I was determined not too miss life this week and went to Chinatown in Downtown LA for an art exhibit and festival. We didn't stay long, but I did it!

CarolAG: It's hard to believe that so many here are dealing with so much - too much. I'm glad your additional diagnosis is benign. Personally, I'm just trying to focus on one hurdle at a time. Otherwise, it's just overwhelming.

boobsbgone: Sending you as many virtual hugs for the loss of your Grayce as your heart can hold. This is kind of weird, but when I meditate, or find perfect calm, say, at the end of a yoga class, I sometimes feel the presence of my dogs that have died. They are in a happy place and they love me. I hope that happens for you too.

Clarkblue: I loved those food suggestions. I hope you share any others that you have.

Pepper: Yes, I have NO stamina! It's amazing to me how the strength is still there.

Moondust: That is some excellent, useful nutritional info. Thanks!

Acie: Great scarf video. I'll try that next. So far I've been looking at pictures of Beyonce and Alicia Keys to steal their scarf looks. I can do a pretty good job just fumbling around with it. I like to tie it in the back, twist the ends to make them skinny, then bring them along my head to tie again in the front, then tuck it all in. In the end it looks like I actually know what I'm doing.

Krekre: So glad to see you back. I go bald almost all the time at home, and care so little that I'm willing to go bald out in the world too. I have sores on my head, so bald is just more comfortable. Your head looks great in your picture, by the way.

This is a drag queen I remembered suddenly today. She doesn't wear wigs or prosthetics. She is my new chemo muse.

Upcoming Drag Shows for Ongina - Drag Near You

lilyp6 · July 2016

A few seconds ago lilyp6 wrote: