Starting Chemo March 2015

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  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Trvler, I take lots of magnesium and potassium to keep my electrolytes in balance, and magnesium is magic for the heart. Also COQ10. You can research it or ask your MO. The magic side effect for me with magnesium is it helps me poop. I haven't taken a single laxative, Colace or anything since I started chemo. At one point my potassium fell below normal after a chemo session and the MO said eat potassium rich foods. And that was even with supplementing. I read on the manufacturers website for a few chemo drugs that they can deplete potassium and magnesium, and those are good minerals for the heart. Maybe worth asking about? My heart rate runs a little high (I think) for about 5-7 days after chemo. Sometimes when I try to fall asleep I can feel it racing and I have to take deep breaths and calm myself down. So if you are imagining it, I am too. I am on a different chemo regimen, though.

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  • Carrie37
    Carrie37 Member Posts: 331
    edited April 2015

    I am late in my response but, Trvler, I was talking about my area being painful in general. I can't even I imagine sex at this point. My poor hubby. The coconut oil seems to help.

    I have been told I will have rads too because of my lymph node involvement. I don't know much more about it since it seems that will happen after surgery. I can't wait to be done with work after this Wednesday. What I would rather not be doing is starting weekly Taxol on Thursday

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  • Meme117
    Meme117 Member Posts: 194
    edited April 2015

    Sorry some of you are having hard times - hugs 💓

    I do notice lines on my nails and my bottom lashes thinning. It's my 13th day after 2nd spa and I've finally felt like pasta with sauce and ice cream, both were delicious. Pre-C I totally loved food, eating, cooking but now the thought of most foods is so unappetizing. I've barely cooked in 2 months. I have been able to get in some good walks and even a little jogging, it does make for an earlier bed time. I visit with MO tomorrow for bw, I think my levels are going to be good.

    I'm due for rads after surgery which won't be till august or even September. i was also wondering if it's completely necessary but I just can't do research right now, trying to stay focused on chemo - one shit sandwich at a time

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  • ninjamary
    ninjamary Member Posts: 306
    edited April 2015

    Hi all. Regarding radiation...I was also curious as to why it is prescribed since (I assume) chemo kills every and anything left. Radiation is on my schedule and I have no lymph node involvement. If anyone finds an answer please post or link it.

    Had a good weekend. Tried to catch up on the house and wash. Did so-so. Would prefer to sit and watch TV all day though. Going through mild depression, but that is expected. I must say I spent the entire weekend eating (lots of cookies!) what I could find in the house. My body/brain seems to know that I will not be eating much at all after Friday and is currently in pre-hibernation mode. Trying to psych myself up for my 4th and final AC treatment on Thursday.

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  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    I messaged my doctor about the heart thing. I will try the magnesium. I have it so I can take it. Let's see if the MO blows me off again. I did mention this to her at the last spa visit. She just said I needed to drink more. Can you tell I don't like her? lol


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  • ninjamary
    ninjamary Member Posts: 306
    edited April 2015

    Trvler - I'm with you about not liking the MO. Yours or mine.

    I used to take magnesium daily (before BC) It really helps with everything. It's good for us hypo-thyroid girls too. Regarding drinking more water. I was so good before BC and now I have to force myself to drink it.

    Sigh.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    Radiation is universally recommended after a lumpectomy of invasive cancer for local recurrence prevention since this type of surgery leaves breast tissue behind, and the removal of cancer can leave cells behind as it is extricated through healthy tissue.  Radiation after mastectomy can be recommended if the cancer is close to the chest wall, skin, has narrow or dirty margins, or node involvement, with or without ALND.  Chemo is systemic treatment, not really local, but to treat cells that have left the breast, and it may work.  Those having neoadjuvent treatment will know how well it does by the percentage of pCR (pathologic complete response) when they have surgery - it is not always 100%, so each aspect of the layered approach of local treatment of surgery and rads, and systemic treatment of chemo and  hormonal therapy, has a potential application for each patient depending on their individual situation.

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  • greenae
    greenae Member Posts: 540
    edited April 2015

    Hi All

    I am so sorry so many are having such rotten SEs. I am 1/3 of the way thru TC chemo, and have been pretty lucky. I have the metal mouth, irritated Chia Pet scalp, gassiness at times, Decadron craze for 3 days, then really tired on Day 4, and achey hips, femurs and lower back on Day 7 after infusion. My biggest complaint is horribly dry and painful eyes, and 3 bouts of scleritis. I am going to forego contacts for a few days and see if that helps.

    I just thought I would share my Onco NP, RN and MD's advice. But I think, especially based upon what I read here and on other Chemo threads, (the people with the least SEs seem to be doing a lot of the same things?) that the keys to fighting the SEs are hydration and exercise.

    Here's the advice I was given:

    Drink 64-80 oz of any non-caffeinated beverage each day ( I drink 1 cup of coffee in the am. That's a "minus" drink, because it dehydrates)

    Exercise 30 minutes a day----garden, walk, run, bike, do laundry, vacuum, anything to get your heart pumping

    Rinse with the baking soda, water, salt mixture Every time you go in the bathroom (16 oz water with 3/4 tsp salt, 1 tsp baking soda-leave in a water bottle in bathroom, change daily)

    Biotene toothpaste and mouthwash

    No Lysine, as per my MO

    Brach's Lemon drops

    Colace, once or twice a day, as needed, first week after infusion, or whenever

    Mucinex--( no D, or DM, etc) for chest, head, sinus congestion (I had bloody "snot" and a tight cough for a week after the first round)

    Cleocin Lotion Rx---of course I got acne all over chin and cheeks, at 57 years old

    Ativan Rx--0.5 to 1mg the day of infusion, and for the really bad nights or day, helps with nausea, too

    No alcohol for 4 days before or after infusion---and then 2-3 drinks per week...for life.

    Eat small meals every 2-3 hours for 3-4 days starting with infusion day

    Dove Liquid Soap for scalp and body, I scrub those loose hairs off my head, and it feels so much better

    Satin pillowcases

    Scrub fruits and veggies clean before eating, no lettuce... and no cold foods from restaurants or take-out, including cold cuts or sliced meats, cheeses, no unpasteurized foods or raw fish


    (And of course the 3 days of Decadron, Zofran and Claritin (the plain Claritin) at infusion time)

    I know all of this is so difficult for all of us. This whole BC thing feels like a full-time job, sometimes. I want to cry when I read every day how so many of you have young children, have to go to work, deal with these sucky SEs, feel like we look like Sh$T, yet have others tell us how Good we look! UGH. I can't wait to feel normal again. My tight and achey Tissue Expander being pumped up every 2 weeks never lets me forget. I dream of being able to sleep on my left side again. And again, I am "lucky" because it was a unilateral MX.

    But I don't want to complain, and I try so hard to remain upbeat and positive. I hope everyone on here can find days where they can forget these SEs for a bit and just feel good. I think of all of you all the time...and send hugs and hopes for CRUSHING these SEs.

    Love, arlene




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  • SueH58
    SueH58 Member Posts: 632
    edited April 2015

    Hi guys

    I'm back. I've decided to take chemo since I had an oncotype score of 20 and a high risk Mammaprint. I start CMF on Wednesday. I am envious that so many of you are almost done. My 6 treatments should be through mid-August, and then rads probably til end of Oct.

    I do have a couple of questions based on your experiences:

    1) Taking Lysene - looks like some take it and others were advised not too. Is that an MO preference? Katy, do you take it every day?

    2) Dosage for magnesium - Theresa, how much do you take? Do you take it every day?

    3) Contacts - Are most of you able to wear contacts? I hate to give in to glasses for the next 4 months.

    I've learned so much from you, and feel I am "ready" for spa day on Wednesday.

    Sue

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  • eheinrich
    eheinrich Member Posts: 792
    edited April 2015

    I was glad to read of others with these stupid cold-like symptoms (not because I wish it upon you in a misery loves company way of course). My eyes water, sinus pressure & my favorite the ever runny bloody nose - YAY!

    I'm in week 3 post-tx. I'm hoping this week will be a good one since I'm done w/ Neupogen shots for this round. I'm behind on everything & my house is really pretty gross. This coming weekend I'll be at a work retreat w/ Alan. He's a partner at an LA law firm & they do these partner retreats every other year. While I'm looking forward to it (they are always fun - and this one is in Nappa so it gets bonus points), I'll be seeing a ton of people who I haven't seen since my dx and am dreading the conversations. Some of these folks I've known for years and years, but while I'd say we are friends, we aren't friend friends, you know? Anyway, I'm sure it will be fine, esp since if it isn't I can always say I need to rest.

    Good luck to any ladies w/ spa day this week

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  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    Napa sounds wonderful! I am jealous. But I understand your concerns. Should be a nice time to go there, not too hot.

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  • eheinrich
    eheinrich Member Posts: 792
    edited April 2015

    We went to an open house at an artists' complex on Saturday & I absolutely couldn't resist this.

    image

    I hope you can see - the robot's left boob is missing just like mine! It's my cancer souvenir. :)

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  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Sue, my amount of magnesium varies depending on what I eat, if I do a magnesium salt bath, etc. I usually gauge it by how constipated I feel lol. Just take what the bottle recommends for a start. I probably take double what the bottle says to take, but each system is different. What I do is increase it until I get loose poop, then I back off a bit from that. Magnesium Glycinate or Magnesium Citrate work best for me. I take no stool softeners, etc. because the magnesium seems to do it for me.

    I had my MO do bloodwork to measure my magnesium and potassium after two rounds of chemo. Even with supplementation, my magnesium was in the normal range but on the low end, and my potassium was just below the low end of normal. Hope this information helps.

    I do a lot of what Arlene does, with the following additions.

    I coconut oil everything, tongue, gums, head, butt, "basement" area, etc. If something looks funky or feels funky, I coconut oil it. I really feel the coconut oil helps with my mouth issues.

    I use a tongue scraper to get rid of dead taste buds on my tongue after a chemo infusion. It is just a piece of silver metal shaped in a horseshoe shape, and I was surprised on the crud that came off my tongue. I read on another forum here that somebody recommended zinc for mouth issues, but not 100% sure why.

    Ditto on the Dove Sensitive body wash. No rashes or issues using it.

    I do 3-4 epsom salt or magnesium salt baths per week. 20 minutes of soaking in warm water, not hot.

    I take digestive enzymes to help for the 4 days or so post chemo when my digestive tract is out of whack.

    I exercise as much as I can - obviously everybody on this forum knows that lol! There have been lots of studies that exercise, even just walking 30 minutes a day as many days as you can, help with side effects.

    I make my bedroom a dark cold cave to aid with sleeping. It is probably about 60 degrees in there, dark, and lots of yummy blankets. My husband and I each have our own fans lol. We remove all lights possible, like alarm clock lights, etc.

    I also like Arlene eat something every few hours, even if it is only a couple of bites of a banana, a handful of almonds, or a string cheese, etc. I have taken zero anti-nausea meds so far other than what I have been given in my infusion bag (just finished round 3). I tried one anti-nausea pill after round 1 because I was panicked about puking and it made me feel like total crap. I think keeping a small bite of something in my stomach and also using the magnesium to ensure I keep pooping regular help. I can tend to feel nauseated if I am constipated.

    I start every day with a short 15-20 minute brisk walk around my neighborhood. My doggie Jack ensures that I do this because he is ready every morning for his little walk. Even if I wake up feeling creaky or crappy, it seems that short walk helps me get on track and feel more normal.

    I use a spray-on substance called Na-PCA to hydrate my skin. Our bodies make it naturally, and it is used in high end moisturizing cosmetics. I got it at a health food store. I just liberally spray it all over my skin once or twice a day. A bottle is about $10, and lasts me like six months. The kind I use is made by TwinLabs.

    I bathe my feet and hands in a bucket of ice water during chemo infusions. Not sure if it helps or not, but I figure it can't hurt.



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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Arlene- great summary. It's good for even an "old hand" to get a review and a bit of a nudge to exercise a little more. My onc nurse told me at our first appt that even walking back and forth to the mailbox 5-6 times a day would help. I'm glad you're feeling okay-

    Sue- I do everything Arlene does, except the Lysine, and I know she exercises more than I do! Haha. I'm sorry you have to do chemo, but I know you made an informed decision, so congratulations on making it and moving on with your plans. I am not sure why some MOs do not recommend the Lysine, but mine says 1,000 mg a day, taken at once, or split up in to (2) 500 mg pills. It's available many places, pharmacies, health food stores, etc, I think I got mine on Amazon. I have been taking it continuously since first infusion.

    There is some discussion (there always is, isn't there?) that since no trials have included any supplements, that it's best not to interfere with the "magic mixture". But we take a lot of different meds for SEs, so who knows what interferes. I've even seen things recommending no probiotics during chemo. No anti-oxidants like blueberries. WTF!

    The amount of contradictory information is alarming, and overwhelming.

    It just underscores for me the fact that nobody knows, the medical community is not in agreement, and each one of us is a bit of a one-person clinical trial. We do our best and we takes our chances. Make our peace. Live our life.

    Hugs and much love to all of you, my giant safety net

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  • SueH58
    SueH58 Member Posts: 632
    edited April 2015

    Thanks, Theresa. You really are the "model" chemo patient (now THAT'S a title I'm sure you always wanted!).

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  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    I also find it confusing that there is so much conflicting information.

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  • Leighrh
    Leighrh Member Posts: 317
    edited April 2015

    Anyone else using a self tanner?  I really did even think to ask MO about that!  I got tired of being pasty white and I have used some for a week or so.  It's just the lotion gradual tanner.  I use it as a body moisturizer.  I haven't seen any reactions to it so I am not sure I should even bring it up to doc???

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Eileen- that art piece is PRICELESS! I'm glad you didn't resist. Get it framed REALLY nicely for yourself. Can't wait to hear where it's home will be in your I hope you'll be able to enjoy Napa some. Like Trvler said, temp should be great and I bet spring is busting out!

    Theresa- I have really missed you the last couple of days. You always make me laugh. Glad you are riding high in the saddle, girl. A question: I used to use magnesium oil spray for a different condition and have it on hand. Opinion? I am still taking lots of opioid pain meds, which is no doubt the source of my recalcitrant constipation. I barely stay ahead of it with colace and senekot daily, and bleed every time i go. Hurts like hell. Of course, I do coconut oil it, who knows how much worse it would be without it.

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  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Sue, lol, I'm not sure I am the model chemo patient as much as I just want as close to 100% normal doing this process as I can achieve. I hate allowing any outside things control me, and I am really, really stubborn. So if I can find a way around dealing with some bulls*t, I will. And I loathe taking medication. Prior to this diagnosis, I don't think I had even taken Advil in probably about 5 years.

    Even after the MO said I needed chemo, I still went out and sought 4 more opinions. I will do what is necessary, but don't push me into unnecessary treatment just because it is the "standard of care" which are words I hear all the time. WTF does that mean anyway? Standard of care for who? Doctors even admit a substantial number of women would never need radiation or chemo, but they can't even figure out who that is so they radiate and chemo everybody. If I did my job that, way, how long would I be paid I wonder? Rant, rant, rant lol!

    Katy, I agree. Who the hell knows what the right answer is? I have read so many conflicting things about supplements that for about 3 days pre-infusion and about 6 days post infusion I take nothing but my magnesium and potassium. The anti-oxidant thing has me steer away from anti-oxidant supplementation during those 9 days. Who knows what is true or not?


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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    I've had so much skin cancer cut out I wouldn't go near a tanner. Just me

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  • Leighrh
    Leighrh Member Posts: 317
    edited April 2015


    OH no... its not actual sun... or anything close to it.... its a tinted lotion!!!! Fake tan if you will :)

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  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    Katy, I have the magnesium oil too but I haven't been using it during chemo. It can have a tingling effect on my skin that is kind of weird. I had my husband put it on his bald head one day (of course now he has more hair than I do, lucky bastard!), and he said it kind of tingle/burned. But I'm sure it would work. If I do a magnesium bath and take my normal magnesium supplementation, hello diarrhea! But it is typically short lived, like an hour or two. But a great way to clean out all the pipes lol. So I know we absorb it through our skin too. It couldn't hurt to try the topical and see what happens. I'm telling ya, I will do whatever is necessary to poop. Vitamin C can get things going in a big hurry too if you take a lot! When I get sick, my husband favorite game is give Theresa Vitamin C until she has diarrhea, and then back off. He usually gets yelled at, but it does work on whatever cold/flu, etc. I have.

    The damn pain meds! I swear they are the most constipating part of the whole thing. It's like can't a doctor prescribe a pain med that DOESN'T cause constipation? Sheesh!

    Mmmm, took one of my grandkids organic lollipops and eating it right now. Nothing like a lollipop!

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  • molly1976
    molly1976 Member Posts: 403
    edited April 2015

    Leigh, my doctor keeps telling me every time I am there that as long as I feel okay I can keep doing everything I did before. He even keeps trying me to drink alcohol, which I am super reluctant to do given my ER+ status! Anyway I would think self-tanner would be fine.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Leigh- so relieved to hear THAT!

    Be aware that everything you put in or on your body is processed by your liver. Your liver takes on a mighty load during chemo. As a matter of personal preference, I try to give my liver a break whenever possible, especially right now.

    But I would opt for tinted spf over nothing, to protect from skin cancer. Clear as mud?

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    lol Theresa. Magnesium oil does burn when it goes on and if you have any open skin, rash, whatever, you'll be miserable for about 25 minutes. I had a chiropractor who swore by it for a lot of things. I just hate to muddy the water...as I have stated, ad nauseum. It's no cocnut oil, I'll give you that

    Lollysounds good. Healthy oatmeal raisin walnut cookie sounds better! Haha.

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  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    Just heard back from the doctor that they want me to see a cardiologist. Ugh. If I have permanent heart damage, I don't really want to know. It does seem better today.

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  • Italychick
    Italychick Member Posts: 2,343
    edited April 2015

    All my positive thoughts going out to you Trvler. I hope the cardiologist appointment goes well. Please keep us posted, and sorry to hear you have to go there.

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  • IndyGal35
    IndyGal35 Member Posts: 340
    edited April 2015

    Ha! This just happened:

    ME: "I haven't been able to keep up on my fluids, because I feel nauseated."

    RN: "Have you tried anything for the nausea?"

    ME: "Oh, yes. I take sublingual Zofran, but it has made me so constipated that I haven't been able to poop in several days."

    RN: Oh. Well, try to drink plenty of water."

    ME: "I haven't been able to keep up on my fluids, because I feel nauseated."

    Thus, the broken record continues...

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited April 2015

    Trvler- ditto on the good mojo coming your way. Keep us posted. Don't think about it. Till you get in front of doc. If you can. Try.

    Indygal- PUH-LEEZE !!!!! You need to be spared the idiocracy

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  • rleepac
    rleepac Member Posts: 755
    edited April 2015

    Shit, shit, shit!!!!! I try so hard to be careful about what I eat and avoid soy and all that is bad for me. I'm sitting here eating my 'Amy's Organic Black Bean/Vegetable' enchiladas and I realize that it's got lots of little tofu pieces in it. Here's the problem...I eat this same thing for lunch EVERY DAY. I know, I'm weird to eat the same thing every day but I like them and not much else tastes good. But damnit! My tumor was 90% ER+ and I'm unknowingly eating tofu every frickin' day. What kind of idiot am I?!?

    I know I shouldn't beat myself up over it and I can't take back the fact that I've eaten dozens of these over the past 4 months but it just pisses me off that I didn't notice the tofu before.

    Sigh...ok. Moving forward and I'll have to find a new lunch food.

    Sad Bekah

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