Anyone Starting Chemo in June 2016

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  • pepper43
    pepper43 Member Posts: 103
    edited July 2016

    Dolly- fascinating on cultures and hair. Loved the b&w pic too- gorgeous. And girl, don't mistake me for a jogger. I'm walking in the early morn. Maybe during Taxol I can jog a bit but this AC portion gets me winded pretty easily. My red blood cell count went down but oncologist wasn't concerned. I asked about Epogen or other boosters but she indicated that's old school and too risky for stroke. If things get dire, she'd recommend a blood transfusion instead.

    I'm on day 16 after first infusion. No signs of hair loss yet (and I have a shaved head already) but maybe since it's a buzzcut I'm not noticing it. I've been delaying shaving thinking my leg hair is gonna fall off any minute.

    Very tired today- but that could be because of the early wake-up time. Did managed to get a bit done today. Made another big batch of bone broth- put 1/2 in a jug for the week and the other half split up in freezer bags so I think this batch should make it through my next infusion. Whee! Also mapped out remaining college visits/open houses/tours for our oldest. Can't believe he's a senior! We're touring nearby UNC-CH on Monday - that's gonna be the easiest of the bunch. The other schools we need to visit are University of Maryland College Park, Virginia Tech, Temple and Mercer. He's already toured Elon, UNC Charlotte and Lehigh (which he didn't like so that got off the list after a lengthy drive to PA). Temple's in Philly so I think I'll need to book a flight instead- I don't want to do the drive during chemo.

    Hope you lovely ladies are all having a great weekend. Sending big virtual hugs your way!


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  • boobsBgone
    boobsBgone Member Posts: 103
    edited July 2016

    Thanks Dolly - I'll have hubby check!

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited July 2016

    Haven't been on. Had a whirlwind week! Catscan was clear! Yay!!!! The Mediport procedure not so good. I was there total 5 hours and what the heck is TWIGHLIGHT? I didn't feel anything but the Dr. Was explaining everything he was doing to a resident! I couldn't feel pain but the sensation of the blood ect....Well -I ended up at home with a major panic attack! vomiting, too weak to move! Ugh!!! Spent today cleaning and gathering supplies I may need to stay on top of SE's. A lot based on info from this group. You all have been great. My first chemo is Monday and I have no idea what to expect as to SE's. My mo has not gone over anything as far as nutrition. I know no alcohol or sugar. Why is everyone off dairy? The hair part I know is a given and will be emotional but right now the unknown SE's are a bit scarier. I pray for us all! We will together get through this and come through the victor

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  • boobsBgone
    boobsBgone Member Posts: 103
    edited July 2016

    Little-Red: sorry they did not go over anything with you. Here is what I experienced: Make sure someone takes you to your first chemo, it lasts a while and knocks you out afterwards, at least it did for me - over 6 hours for first tx. Make sure you take your meds today and tomorrow, it helps with SEs, i promise you and continue taking afterwards until your body tells you that you are okay. listen to your body.

    Dairy seems to have a negative response, at least for me as well, where it motivated the diarrhea and gave me harsh cramping. I switched to rice milk (due to nut allergy). plan on plain rice and plain noodles with broth. force yourself to drink as much water as you can - it will be difficult, but make the effort. try to eat protein as well, it helps.

    I was fine the day after tx just a bit tired, then the next four or so days were a bit rougher with nausea and headache, major major fatigue as well. everyone reacts a bit differently. I also experienced dry mouth - Biotene rinse works good. my sinus continues to drain, probably because most of my nose hairs are gone. I had to shave my head 2-weeks after first tx since I could not handle it falling out anymore.

    the important thing is to stay hydrated, eat clean foods and protein and take meds. listen to your body, if your tired, nap. your body is getting hit with a boatload of chemicals killing everything it can, good and bad. if you feel off, call the dr and tell them. how it was explained to me, "if you feel something that is not your normal, call" - be safe not sorry.

    I sure hope it helps some. bring snacks, a blanket, things to do and comfy clothes/slippers with you to your tx, you want to be as comfortable as possible - that is what I did - I had a big bag full of stuff just for me. I was thankful for the slippers and blanket I brought with me!

    You got this, you are strong, you are amazing and you are a survivor! You are not alone!

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited July 2016

    BoobsBgone Thank You for the info. What Meds should I be taking? They gave me Zofran and the cream but only told me to put the cream on with Saran Wrap for the port on the day of chemo. They said nothing about the Zofran? You all are amazing

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited July 2016

    boobsbgone I just checked and the script for ondansetron is as needed for nausea. I'm assuming it's for after during the week. I've been taking acidolpholis and drinking cranberry juice. Lots of water. Other than that? Oh last question... Any issues with the sun? Sunscreen SPF 15 ok? If I feel up to walking the boardwalk and I love the calm and serenity of the beach!!!! I won't burn with a 15 I have olive skin! Blessing

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  • Natalie68
    Natalie68 Member Posts: 20
    edited July 2016

    Hi all, wondering if you mind me joining in at this late date! I came across your threads when I was searching hair loss!


    I had a mammogram 16th June, very obvious grade 3 Bc. Lefty has no 'structure' left and inoperable currently but thankfully no mets were found. Started chemo (a/c 4 rounds) 29 June!

    Barely had much of a chance to get my head around anything.

    Just had a second hair cut as I have been shortening my hair over the last couple of weeks.

    Will continue reading through.

    Natalie

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  • ClarkBlue
    ClarkBlue Member Posts: 170
    edited July 2016

    My experience with TC for what it's worth:

    Keep a log of days and SEs - this will help you for each round since you will likely experience each treatment the same. And you won't remember it afterwards lol.

    Treatment day for me is on a Thursday - I feel great the day of treatment - I believe this is due to the steroids. (TC is given steroids day before of and after treatment due to high peeve of allergic reaction to the Taxotere).I always go back to work that day. First round I could have gone back to work the next day. Second round I went to work the second day, and left around 1pm because I was so tired. Third round I didn't work the day after - so it appears that fatigue is cumulative. I have the weekend to deal with the rest of the SEs. First round I went to work on Monday and it was terrible. Second round I took Monday off and was fine by Monday night. Third round I had to take Tuesday off as well and was good enough to work on Wednesday but didn't feel 100% until Thursday (7 days after treatment) - so it appears that while the SEs aren't terrible, each treatment I found that it took a little longer to recuperate.

    Port or not - I did NOT get a port since I am only getting 4 infusions and they are every 3 weeks. I haven't had any vein issues at all that are IV related. I had a superficial clot in another vein, but it wasn't any of the veins used for treatment.

    Sleeping - First round I had a terrible time sleeping from the nightmares and steroids. By round three I had switched to Ativan for nausea so the nightmares were gone and it acted as a sleep aid so I've slept pretty good.

    Constipation - it's due to the anti nausea meds - if it's bad, see if your MO can prescribe something else - otherwise, probiotics and Senekot were the only things that worked for me preventatively - but I also changed my anti-nausea meds to Ativan every 4-6, and a 1/2 Compazine every 7 hours.

    Hair loss - most of you are already experiencing this. It starts around day 15-16 post first treatment. Mine came out in a HUGE shed, so I buzzed it. I never lost it all - but some do. It sticks up everywhere and is very sparse. No bald spots, but not much hair. Haven't lost my eyebrows or eyelashes. Heard that could happen after treatment, but so far so good. I have had a tough time with it, but have succumb to "it is part of the process" and have accepted it.

    Taste - my tastebuds are way off for about a week. Water tastes AWFUL so I struggle to stay hydrated. I find myself over salting everything and eating too much just to taste anything... nothing satisfies... this goes away after a week as well. Just try to eat as healthy as you can. Chemo attacks our guts and stomachs so expect some discomfort and upset for about a week - the bummer is that you really don't know if it will be constipation or diarrhea until it's too late - sorry! Just be prepared for both - then you'll know what you're dealing with the rest of the treatments.

    Exercise - Do what you can - just do something. Even on the days you don't think you can, at least walk around the block. It helps - many of the women here will attest to that as well.

    Neulasta Shot - Take an allergy pill (Claritin to Allegra D) the day before through day 5. Take something for the bone/joint pain that will come. Do this BEFORE the shot (like an hour before). Would highly recommend a muscle/anti-inflammatory like Ibuprofen or Naproxsen (Alleve) if your MO says it's okay. Tylenol didn't touch it for me. Take anti-inflammatory through day 5.

    BBBB - I am painting my nails with black polish - although I've been doing this for YEARS, so if black is not your thing, any dark color will work. I guess there is a reaction to the Taxotere and UV which can cause nail pain and falling out/darkening? I haven't had ANY issues with my nails - but have also heard nail issues can begin AFTER treatment - so I will continue for a few months afterwards. I am taking L-Glutamine for neuropathy and haven't had any at all.

    JoeyChen - OMGsh the furry mouth!!! Yes - no matter how often I brush or rinse, my teeth and gums are covered with furriness. Haven't been able to figure out how to stop this one - I just brush twice/day and rinse as well but I do find that it does ease up after about a week - still furry but not nearly as bad. I can't wait to start using my Listerine again!!! Re: cumulative effects...I know that my MO and others on this board have said that your SEs won't change but they may get worse - meaning you won't get any NEW side effects, but the ones you have may get worse. I have found this to be true with fatigue and with just taking time for the "fog to lift" and be myself again. I made some changes to my anti-nausea regime last time and that helped with constipation and bad dreams/neurological effects.

    Dolly - Why the aversion to tattoos? Pain? I assure you that as small as they are, they will hurt less than any shot you've ever gotten. In the end it will look like a small freckle so if you're concerned about appearance, no one will be the wiser. I am a HUGE fan of tattoos so maybe I'm not the right one for you to talk with - I have a full sleeve on my left arm and plan on more. Have always been a rebel, and they are just my way to ensure that I'm always different than everyone else. LOL

    Someone asked about dairy... I would HIGHLY recommend reading a book called, "Anti-cancer: A New Way of Life" by David Servan-Schreiber. It is a very easy read and he outlines which foods and nutrients we should be taking and staying away from and why. I know that the big reason to stay away from dairy OVERALL is due to a few things: hormones and Omega-6s. Most dairy is made from cows fed with ridiculous amounts of hormones, and that are fed with a corn diet. The hormones are obvious, but the corn-fed diet increases the Omega 6s in our bodies which increases inflammation, which increases risk for cancer and cancer recurrence - and other diseases. That's also one of the biggest reasons to cut out red meat, or only eat GRASS-FED meats (not grain fed). It's why we should be taking Omega 3s every day - to balance out the Omega 6 levels. Keeping inflammation down is a big thing for disease prevention. Go get the book - you won't be able put it down!

    QUESTION: beginning with the second treatment I have found that about a week or so after, my right arm is puffy and retaining fluids. I also found that my ankles are swelling. I know this can be a SE of the Taxotere - but I also know that I am eating a lot of salty stuff since I can't taste anything... My right arm is the arm I've had my IVs in, AND the arm that I had the one node taken out - so it could be that it's from that too. They used my left arm for IV during third treatment but swelling is still there. Called MO and they think I'm just dehydrated and am eating too much salt too. Just wanted to see if anyone else experienced this as well?

    Anything else? All of us have such great advice...am so thankful for the advice I got prior to starting my treatment as well. :-)

    -Keely

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  • ClarkBlue
    ClarkBlue Member Posts: 170
    edited July 2016

    Little Red - do you have anything else for nausea other than Zofran? Ask the nurse at chemo when you should begin taking it - they will know. Also may want to get some Ativan or something else to help sleep and nausea in addition - I know I had 2 prescriptions for anti-nausea, but also could be that every MO is different! I know that Ativan has helped A LOT of us here on this thread - it helps for sleep and anti-nausea and doesn't have nearly as many awful SEs (constipation and neurological/nightmares stuff).

    -Keely

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited July 2016

    ClarkBlue I will definitely read the book! And keep the log! All great ideas! I'm taking my last day of feeling good full of appreciation but scared of the unknown. I have Adriamycin Cyytoxin. I guess that's the AC. My Mediport is still sore. I will definitely ask for the Ativan and let the MO kmow about my panic attack after I got it in Friday. I already suffer from , constitution issues, arthritis, and poor sleep 😬😬😬 so all advice is golden

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  • lilyp6
    lilyp6 Member Posts: 214
    edited July 2016

    Happy Sunday Ladies,

    It's much harder for me to capture all of my responses to everyone here. I have to take notes! It's much easier on FB in my opinion, but here goes...

    Keely: I understand about snapping out of it and feeling more normal. Do you think that's a sign of the chemo leaving your body? Amen to your message about hiding!

    bbbb: Your family will forever refer to "putting Mom's hair in the cooler," lol. I'm so happy you had a beautiful day. Yes, we can absolutely still laugh!

    labscientist: Thank you for writing to beautifully about fiercely holding onto your joy. I hope your weekend was a little smoother, and that your poor nose stops bleeding. That's a real challenge, I'm sure.

    adotson79: Welcome back. I hope you find the foods that work so you can keep eating.

    Bobbsbgone: Were you able to hang out with your friend? It's not easy to find the energy, but can be so worth it.

    Dolly: I so loved that inspirational picture that you posted.

    I have the Look Good Feel Better workshop tomorrow, plus blood tests, chemo on Tues, then an appointment with my husband to review a concerning nodule on his thyroid. I'm worried about that a lot. I also have an oncologist follow up for my chemo on Thurs. Too many appointments. Our roof has been in the process of being replaced for over 2 weeks now. That is NOT cute.

    My last chemo was Tues. Last night I went to a small party with dear friends. I had one glass of wine with dinner, plus a ton of water. I wore my long wig, then switched to my halo and hat. We created categories and questions for our own Jeopardy game, and I laughed so hard I thought I was going to pee my pants. I got very tired, but it was so healing.


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  • Cody3110
    Cody3110 Member Posts: 25
    edited July 2016

    Lilyp: congratulations on finishing chemo! So happy for you! That glass of wine sounds heavenly. How wonderful that your friends threwyou a party.

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  • boobsBgone
    boobsBgone Member Posts: 103
    edited July 2016

    So today did not go as planned, felt light-headed and dizzy most of the day. postponed my plans til tomorrow. Finally starting to feel better, hubby says I look better, gee - it's only 4pm! I'll be asleep by 8pm! LOL

    Little-Red: I take Zofran - and the SEs are annoying. I re-read some of the posts and would be willing to try Ativan if it has less SEs of constipation. Imodium A-D works but knocks me out as well, so i hate taking it. I agree, log what you take, when you take it and what your feeling - SEs and overall what you feel. Every time will be different, it has been so far, for my 2 times. Everyone reacts different, so you need to find what works for you - all these suggestions are great, and I think I am going to have another conversation with my MO. If you wear sun screen and protect your head as well, you should b okay. do not overdue it in the sun. hats are good too! the sun is good for you ,as always in moderation.

    Lilyp: Way to go - finishing chemo. you inspire me!

    may our SEs diminish quicker than our hair! (pretend it is funny)

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  • Acie
    Acie Member Posts: 57
    edited July 2016

    Little red - try to not worry too much. We will all be there with you in spirit on Monday. Tomorrow will be easier than you expect. The nerves are the worst part. I recommend you write down all your questions before you there. They will be able to answer them for you. Use the cream and Saran on your port 30-45 minutes before they access it. Follow all the doctors orders on meds and don't take any other supplements without their approval. You might also want to get a diary or calendar to document your side effects, diet and meds. I have found it very helpful and plan to use it to review things with my MO on Tuesday and all future Appointments.

    Lilyp - so happy for you! I will be very interested to hear what you think of the look good feel,better thing. I plan to go in August.

    Boobs - so sorry to hear you are having a rough time. My thoughts are with you.


    I go for AC #2 on Tuesday. I am ready to get on with the cancer killing. Also, sOmething interesting happened a couple of days ago, my tumor suddenly started to hurt. Not bad, but I had had no pain at all until the last couple of days. Do you guys who still have your tumors feel them?

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  • Moondust
    Moondust Member Posts: 510
    edited July 2016

    I am home from my mountain trip. Camping was great, the weather was awesome, and the hikes were beautiful! I did take a few photos just so I could share them with you. Here are my favorites, and you can see the rest here. I am extra tired today, but so far still healthy. It takes so long to catch up with the posts if you leave for a couple of days! I'll be back later when I've read them all!

    image

    image

    image

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    Acie, apparently it is a good sign to feel pain during chemo before op. It means that the lump is shrinking and the chemo is working. Try to search on this site and you'll find lots of women talk about this!!! Wow!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    awwww gorgeous pics Moondust! That's so lovely that you had such a great break. That looks such a lovely part of the countryside. Love the bambis! Hope you are not too tired. Early to bed and ready for a great week

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  • Heathet
    Heathet Member Posts: 257
    edited July 2016

    I just got up from the couch to get ready for bed, looked in the bathroom mirror and said oh shit. Looking back at me is this irl with a huge bald spot at the front of her head with a little tuff in the center trying to hold on! I guess I didn't realize how fast my hair would shed! I mean my eyebrows are already going and I just got my eyebrow shadow and pencil, thankgoodness! This cancer sh** sucks! That's my rant!

    Moondust - great pictures! It looks very peaceful!

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  • lilyp6
    lilyp6 Member Posts: 214
    edited July 2016

    Ooops...should have been more clear. My last chemo infusion was Tues. My next is this Tues...

    Wine is discouraged, but less than a full glass with a meal and lots of water was what my onco nurse suggested if I must. It was not a party for me, but the whole thing was very fun.

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  • lilyp6
    lilyp6 Member Posts: 214
    edited July 2016

    Moondust: Deer traffic! That's so beautiful.

    Acie: Yes, I sometimes have strange aches and pains in the tumor and lymph node sites. But I can't feel my tumor anymore. Woo hoo!


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  • labscientistmom
    labscientistmom Member Posts: 287
    edited July 2016

    lilyp6: nosebleeds are daily , but usually managable. Pain in my sinus, not so much. We went to see a movie yesterday then had a nice dinner with my husband while our son ran around @ninja night at the karate studio. Went to church today, was great to see everyone, had a nice lunch with some friends and got a cutting stuff out project done for Vacation bible school which we are having in a couple weeks. Everyone participates in our family, its always a fun week. Both of my older brothers called me this week to see how I am doing, which is amazing. They usually don't call. We are headed to Arizona on Thursday. Praying for lots of energy and minimal SEs to deal with while traveling. I will be in chemo on Tuesday too, be thinking of you!

    Moondust: thanks for the lovely pictures. The baby deer are sooo cute.

    Dolly: hope you had a nice weekend too.

    BoobsBgone: bummer about plans changing, I have that happen all the time. I agree with Heathet, that's the worse part of this, not being able to predict what I will feel like from day to day. I love your dog picture btw. I hope your tomorrow is better, ((hugs)).

    Acie: you will be on the chair with us Tuesday, ((hugs)) and prayers your way too, for no complications infusion and minimal SE.

    Blessings to all: A

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  • Joeychen
    Joeychen Member Posts: 15
    edited July 2016

    Clarkblue/keely thanks for that rundown, that is v. Helpful!! I did track my SE's thru about day 8-9, where I have now found myself feeling pretty back to normal, so am going to enjoy this period before the second infusion on the 20th.

    Lilyp6 - I'm going to a LGFB seminar tomorrow too, but up here in Nor Cal :)

    Today I ate terribly (some cheese, delicious cake), and drank a fair amount of wine. It was at a beautiful memorial celebration for a fellow scooter club member who passed away unexpectedly from natural causes a couple of weeks ago. While it was a wonderful way for her friends to come together and tell stories and be there for each other, it really made me feel my mortality at this point in my life experiences. However, seeing as I had told my fellow clubmates when first diagnosed, then 'came out' on Facebook with a chemo selfie, it was also a great chance to connect with friends and get love, support and hugs in person. Hopefully that mental boost will cancel the poor dietary choices. I guess one good SE was no taste for sweets :) Will have to up the activity now I'm feeling better

    Cheers,

    --jo

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited July 2016

    bbbs Acie ClarkBlue LabScientistmom DolyDimples JoeyChen Lilyp6 Healthet Moondust Cody3110 and everyone else I may have missed sorry! Today is my big day at 9:15! Your advice is duly noted and Acie -Capri like Jammie's, blanket, water, diet citrus green tea and crackers packed in my bag Also my journal is ready to go and questions for my MO! Can't thank you all for the guidance. We are soldiers. Right now I go there " cancer free" just to have It to stay that way. Ironic

    I will do it wilth all you beside me! God Grant Me The Courga to accept the things I cannot change courage to change the things I can and Wisdsom to know the difference!

    Hope everyone has a low SE Day.

    Love Red

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  • lilyp6
    lilyp6 Member Posts: 214
    edited July 2016

    Little-red, Thinking of you today. We are all there "with" you.

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  • Heathet
    Heathet Member Posts: 257
    edited July 2016

    Little-Red - thinking of you today!

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  • CarolAG
    CarolAG Member Posts: 17
    edited July 2016
    Does anyone know why tumors less than 5 mm are not usually sent out for oncotype? Insurance companies require tumor to be at least 6 mm before they will cover it based on NCCN guidelines I think.

    I had mastectomy for 9 mm grade 1 tumor and during path another separate tumor was found 2.5 mm but grade 3 and weak estrogen of 40%. My oncologist ordered the 9 mm tumor out for oncotype and told me he doesn't test 2 mm tumors. He said he wouldn't even know if he would trust the result.

    Hospital ended up sending the 2.5 mm tumor out for oncotype by mistake and score came back high at 39. So I am having chemo based on a test that wasn't even supposed to have been done!

    Any thoughts?


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  • Cody3110
    Cody3110 Member Posts: 25
    edited July 2016

    little-red: thinking of you today. You can do it

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  • Cody3110
    Cody3110 Member Posts: 25
    edited July 2016

    moondust: loved your pictures. Glad you had a wonderful trip

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  • Acie
    Acie Member Posts: 57
    edited July 2016

    Moondust - love the photos.... not only are they of beautiful scenery, but you must also have some great skill. So impressed!

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  • boobsBgone
    boobsBgone Member Posts: 103
    edited July 2016

    Moondust- love the pics, deer - oh how cute.

    Little-Red: you got this, make fun with the nurses, it helps (mine always laugh back at me, or with me - not sure)

    I am so happy I feel so much better today, still tired, and tummy is churning i think i missed a drug yesterday - but handling ok today. I am going to go out today, I said so!

    May I rant, not about SEs? I made one request to my friends/family not to put my cancer on FB and of all people, my mom did it twice! not just once, twice this week. I made it very clear no postings on FB about my cancer. (MY CANCER, huh). I was livid. 2 friends text me to tell me she posted about it. It is not Her place to post about My treatment. If I wanted someone to know I would tell them. She broke my trust and really hurt my feelings by not honoring one f-%^& request. When I asked why, she said, "don't know I wasn't thinking" really - you had to think to post the link on there (I am on Caringbridge.com), Twice, not just once. Then i told her she was not allowed to talk about my tx anymore with anyone since she cannot honor my wishes. She said I was over-reacting, and I do not think so. My feelings are mine and no one can judge is they are right/wrong. they are my feelings. I would never tell someone their feelings are wrong, especially someone going through cancer. My body is effected, my body is taking the SEs and my life is upside-down. I told her I was beyond disappointed with what she did and I trusted and leaned on her for support and she just tossed it aside for gossip of MY condition. whether intentional or not. She should have thought of me first, her only daughter going through this, not informing someone she thought should know. I have since asked her to not go with me to any more apts since she cannot respect me and my wishes. I was crying and I do not need any more stress, I think we have enough with our treatment and SEs. I felt very betrayed and my emotion set aside as if not important. She said sorry and how can she make it up to me. My response "you have to figure that out, I have enough on my plate to worry about". Who does that to someone (family)!

    thank you for listening. oh, and hubby is super angry too that she did that. She does have a history of ignoring what you want and doing what she wants no matter the outcome. this time it was too big a deal for me. And no mom, I did not over-react, you underestimated the importance of my respect for MY TX.

    hugs to all - and I am okay and I will get through this. Now, post something funny or positive!!!! (to offset my BS)

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