Starting Chemo December 2015

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  • MM2221
    MM2221 Member Posts: 11
    edited January 2016
  • mvspaulding
    mvspaulding Member Posts: 446
    edited January 2016

    Thanks for the link Memba! I'm going to check those out.

    I did hear about avoiding soy for ER+ BC. However none of my doctors have ever said it to me. I'm not sure I eat anything with soy anyway.

    KhinMD, I had trouble sleeping last night too. Hoping I won't tonight. I can't understand how I can be so tired and then keep waking up in the middle of the night. I have some Valium left and thinking of taking one tonight.

    Good luck tomorrow Lou53. My white count was low going into my second because I didn't have the shot first time. I didn't tolerate the Neulasta shot very well. I hope you have a better time with it.

    Love all the encouragement and catching up with all of you.

  • MM2221
    MM2221 Member Posts: 11
    edited January 2016

    image

    Agh, the many looks of chemo. I found that if you google cheap wigs on amazom.com. I found a slew of them for $6-$10 each and they work well with hats or scarfs. I use a wig cap underneath them and have gone as much as 10 hours before ripping those locksoff!

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

    MM2221, thanks for sharing. You truly do look pretty in your metamorphosis :) I'm in Lilburn and go to a small cancer center at Emory Eastside in Snellville. Appt with onc.today most likely to talk me in to continuing chemo. Not gonna happen I'm afraid. Memba, you are one gorgeous lady! Take care ladies. Here's my "before"...

    image

  • Karenbo
    Karenbo Member Posts: 61
    edited January 2016

    Thanks for the tips Memba and Opt4life!

    Nebraska, My naturopathic MD said that pure and/or organic soy has been proven to help reduce breast cancer risks, but to avoid modified soy (avoid soy protein powders, soy protein isolates, processed soys, etc). I still eat soy (like steamed organic edamame, organic edamame pasta, etc) but am very careful in reading labels to avoid the other kinds.


    For Anyone: FYI...... Things I've found helpful.......

    For mild nausea, I love Go Raw Ginger Snap Sprouted cookies. It really curbs any mild nausea that I might have. I keep a bag in my purse and each room of my house! It's made with real ginger (it's non-GMO, Vegan, Nut-free and gluten-free) and I like the taste. You can find it in most health food stores, but I've found it's cheaper on Amazon. Also, I've found cold beverages work better for me when nauseated than anything warm or hot.

    For constipation, I've found "Calm" (a powdered cit mag) each night helps me better than other stool softness or senna. You just add it to water and drink at bedtime. And since it's a power, it's easy to add or decrease the amount of powder until you find what works best for you.

    For facial break-outs -- my skin has been much better and no more break outs since switching over to healthy non-toxic skin products. After diagnosis and finding out all my genetics weren't a factor in my cancer, I started researching how to get rid of environmental risks and toxins in my everyday stuff. I've been impressed with everything I've tried from the Ava Anderson Non-Toxic product line so far. (deodorant, skin, hair, soaps, household cleaning products, etc)

    If non-dairy.... I'd read studies where diary (specifically casein in dairy products) can feed cancer, so we've cut out dairy in our diets since the breast cancer diagnosis. And we are cutting back on sugar, but definitely not eliminating it totally! Life's too short to give up everything!!! But I've found some really yummy non-dairy chocolates and other snacks/desserts that are non-dairy if anyone is interested. Gotta keep the chocolates around!!! :) Yes, I'm a chocoholic :)


    ????? Question for those of you who have had hair loss.... Would appreciate recommendations for taking care of our scalps. I still have prickly fuzz on my scalp. I've always had relatively dry skin and my hair did best if I only washed it every other day (and used regular conditioner each time). Should we be washing our heads everyday still or frequently still...and with some type of soap instead of shampoo? Should be be using lotion or other skin products on our scalps? Just curious to what you all are doing and what seems to work or not work so far. Thinking and hoping it will be easier once all the hair is finally gone.

    I have to admit, it's much easier for me now that my hair is gone than when it was just coming out in the handfuls. Naturally, I'd prefer to have my "old hair" back, but trying different hats and hair coverings is actually kind of fun. And I like the look of some of the wigs; just wish they were more comfortable. Thankful my husband likes my new "bald" look as well. :)

    So thankful for each of you and this discussion board. Appreciate the tips and how we can share, vent and encourage each other in this journey.

    Enough rambling for now! Hope you each have a terrific day with little to no SE!!!!

    Stay strong and fight on!


  • mvspaulding
    mvspaulding Member Posts: 446
    edited January 2016

    Karenbo,

    I am feeling guilty and way behind on my diet. I really haven't changed my foods I ate before I got diagnosed so I guess I am going to have to do some research on that matter. Other than cutting the artificial sweeteners, I haven't thought about it.

    On the scalp/stubble issue, I have no idea if this is helping or not, but when I first shaved my hair my scalp was a little irritated and I started using Paul Mitchell leave in conditioner to it. It seemed to calm it. So I have just been washing my scalp in the shower with my face wash and applying the conditioner. My stubble (what I have left) is much softer and doesn't irritate under hats and wig.

    I knocked myself out with a valium before bed last night and slept much better, so today is a better day! :)

  • KatG68
    KatG68 Member Posts: 7
    edited January 2016

    For those having pain from the Neulasta shot, try the Claritin! I took it the day of my first shot and did have one night of back pain. Felt like fireworks exploding in my back - shots of pain here, then there, then over here again! It was horrible! The next day it settled in my hips and I felt like an old lady when sitting down or getting up. I continued to take the Claritin every day and I didn't have any pain with the second shot.

    I got one of my new wigs in yesterday evening!! It's more ME and my color and I like it better, but it's still uncomfortable and will probably come off when I go to lunch in a few minutes! I'll sport the scarf the rest of the day - it's WAY more comfortable, even if it screams I've got cancer! This is day 4 of wig-wearing and I did make it through one entire day! Yay, me!! I love knowing that I'm not only in the wig wearing, itchy head world! The stubble is KILLING me! Just fall out already!!

  • Lyra10
    Lyra10 Member Posts: 59
    edited January 2016

    Have any of you ladies used Acure Organic lotions? I am about to re-up my Lindi Soothing balm but had some samples of Acure?

  • brithael
    brithael Member Posts: 224
    edited January 2016

    Fever hit the magic 100.4 last night. Paged my MO, and she suggested she send out an antibiotic instead of sending me to ER. Glad she did, although she did tell me to hit the ER if my temp came back up.

    It got as high as 99.9, so I emailed my nurse practitioner about coming in (since my Dr. had actually called me right before boarding a plane.) Glad I did. My neutrophils didn't even show up on the auto count. She thinks they might on the manual, but gave me a Neupogen shot today, and I go back for another tomorrow. They would have done the Neulasta, but it would have changed all my chemo days since I'm only 11 days out from next infusion.

    I know a lot of you have gotten the Neulasta shot as a matter of course after your first infusion, but I didn't. Don't know if that was an insurance thing, or just a wait and see how chemo affects me choice. Now, I will probably have to have the Neulasta after each infusion. I know many of you talk about taking Claritin for the bone pain. I take Claritin daily because of seasonal allergies. Wonder if it's going to help me?

  • proctor1725
    proctor1725 Member Posts: 33
    edited January 2016

    I am consistently amazed at how different everyone is with their SE's and other challenges/no issues. This week, I had my second of 4 Taxofere treatments (every 3 weeks) and so far pretty good. Minor SE's but nothing too bad. going to get the head shaved today - could have done it days ago but my friend really wanted to do it for me so I have waited until Today. Sipping glass of wine but I really am looking forward to the relief and disappearance of the itch. I will probably wear the soft hats more than the wig but time will tell. My dauther asked me "so they cutoff your boobs, your hair falls out, your nails might fall off (newly developing side effect)....are you going to loose your teeth too?" Love that kid! Her energy and smile keep me going so much! She is 6 and I thank God for her everyday! Hang in there ladies! I think of you often and love to hear your fun stories! We got this!

  • Lyra10
    Lyra10 Member Posts: 59
    edited January 2016

    Ladies please go log into www.cleaningforareason.org! I know so many of you are struggling and this organization looks to provide at least a little relief! Bee good to yourselves!

  • Lou53
    Lou53 Member Posts: 81
    edited January 2016

    I just got the Neulasta pod thing that will give me the shot tomorrow. When should I start the Claritin and how often do I take it? I am praying for less side effects this round! Battled a 102.5 fever for 4 days last one due to like zero white blood cell count.I am now 1/3 of the way done! Woo hoo

  • puremalarkey
    puremalarkey Member Posts: 30
    edited January 2016

    Hey y'all, I'm on day 4 of my second treatment. This time I took the Claritin the same morning as chemo since right after treatment my nose was runny. The first time I had a lot of mean bone pain but this time it's been better. Still achy but not the twisting in bed reaching for pain RX's pain. I will probably continue the Claritin until I don't ache anymore.

  • chinacat
    chinacat Member Posts: 78
    edited January 2016

    Lou53 I didn't get my bone pain until day 8 after 1st nuelasta injection. Not the norm. 2nd injection I took the Claritin On days 6,7&8 and I had no bone pain. If you know when the pain started last time try two before through the day of pain. hope this helps.

  • mvspaulding
    mvspaulding Member Posts: 446
    edited January 2016

    I took the Claritin day of chemo and day of shot and couple days after. I missed the dose the day after though because I was in hospital. The auto injector went great but I think I had a reaction to the shot. Who knows. Hope your treatment went ok. Get some rest. :

  • KHinMD
    KHinMD Member Posts: 44
    edited January 2016

    chinacat - Thanks for the reminder about the Ativan. I already have some but forgot that I could also use it. I usually don't have problems falling asleep. I wake up at 3 or 4 in the morning and then can't go back to sleep. That hasn't happened since earlier in the week though. Next time I will have to see if it helps.

    Opt4Life - I have a wig liner that seems to work well. My problem is more with the tightness, but I'm slowly adjusting to it. I guess it has stretched out a little to accommodate my big head. I wore it at work and was complemented on my new 'do. I'm near your neck of the woods. I grew up in northern VA and my parents still live there. I live 40 minutes away from them in MD. I wanted to continue to live in VA, but I work in MD and couldn't deal with the commute during rush hour.

    Karenbo - Good question about proper "scalp care". I've just been using soap with no issues. I don't seem to have a problem with dryness yet, in which case I might try something like coconut oil.

    brithael - The Claritin should help with bone pain. If not, I think you can try Alleve. My nurse had mentioned this to me, but I never took anything other than Claritin. As someone who has had the Neulasta injection twice, I felt like the bone pain was more intense the first time. The second time, I think my body was used to it, and it was milder. It might be different for each person. I was hoping someone else who has had the Neulasta shot more than once could vouch for this as well, and noticed the posts from KatG68, puremalarkey, and chinacat.

    Lou53 - You can take the Claritin today. My nurse recommended taking it the day before receiving the Neulasta shot. Then you can take it once a day (if you have the 24 hour dose) until you don't have any bone pain. That should typically be about 4 days but might be longer.

    proctor1725 - Yep, we got this. Hope you continue to do well. And your daughter sounds awesome.

  • Karenbo
    Karenbo Member Posts: 61
    edited January 2016

    KHinMD and mvspaulding - Thanks for the scalp tips!

    Mvspaulding - Please definitely don't feel guilty about diet! We've all have many more important things on our minds! I've always been interested in health and been a bit anal about making plans & lists... plus I feel empowered by DOING (or at least feeling like I'm doing) something pro-active on my own to kick cancer to the curb.

    Proctor1725 - Thanks for the smile and giggles about your daughter's comments! I bet you never have a dull movement in your house!

    KatG68 - I'm soooooo with you about the stubble. Love how you phrased it "just fall out already!"

    Lyra10 - I've used Acure Organics shower gel and really liked it. Very gentle and with good ingredients and no toxins that I know of. I haven't tried any of their lotions though. Thanks for the tip on cleaning. Sounds like a great program/organization. Just wish they had providers near me. Maybe someday. Currently feeling grateful to have recently had a friend gift me with cleaning my house earlier this week. So wonderful and felt very spoiled indeed!

    Went to a Look Good, Feel Better session this afternoon. It was fun and I got to meet 2 other local women with breast cancer in various stages of treatment. Even got to leave with a new wig! It looks more natural than the one's I purchased on line myself, even though the style is very different than what I'm used to. I stopped by to visit one of my best friends and my 2 neices/goddaugthers afterward and the 4 of us had a blast trying on the wigs. Being around kids can definitely increase the laughter factor! Good medicine!

  • mvspaulding
    mvspaulding Member Posts: 446
    edited January 2016

    Thanks Karenbo, and it sounds like you had a great day. Good for you! I am signed up to go to a look good session this coming Monday. Looking forward to it. I wouldn't mind getting a different style wig. Why not mix it up a bit! Tomorrow I've decide I'm going to be brave. My Bengals are in the playoffs this weekend and everyone will be wearing Bengals gear to work so I'm wearing my jersey with my Bengals ball cap with orange head scarf underneath! gulp! If people had been secretly wondering if I was wearing a wig this week they will know tomorrow! Ha

    Lyra10, a friend had told me about the house cleaning service as well unfortunately there aren't any in my area either.

    Night everyone and have a great Friday! TGIF

  • chinacat
    chinacat Member Posts: 78
    edited January 2016

    lyra10 - a friend sent me M Press day cream and M Merse night cream (by M Pulse) and I love them. Here's where you can find them: http://www.aobmedspa.com/products-site/products-by...

    They are paraben free, vegan and nonGMO. I normally don't really need moisturizer but now, well, my skin isn't as it was. These moisturizers are wonderful. I use it on my head as well.

  • Opt4Life
    Opt4Life Member Posts: 191
    edited January 2016

    KhinMD, my wigs were tight at first too. My big head stretched them out in a day. I love Northern VA. I get all the comforts of the suburbs but I'm 9 miles from DC. I used to live in NYC so this traffic is tame by comparison but I hear you on the rush hour commute. If it takes longer than a half hour to get to work or anywhere else for that matter, I'm peeved.

    Karenbo, I have gotta try one of those Look Good sessions. I hear so many positive comments about them. Glad you had fun, got a new wig, and met some sisters on the same path.

    Brithael, good catch on the fever. I purchased a thermometer and have not taken it out of the package. You take care of yourself.

    Mm2221, you are rockin the different looks. I like the wigs and hats.

    Birdie, I think you look great with both long and short hair.

    Lyra, thanks for the cleaning tip. I desperately need someone to dust--its the only cleaning I dislike doing myself.

    Ladies, we made it through another week. Hope next week is better for all of us.

  • Twirp26
    Twirp26 Member Posts: 178
    edited January 2016

    mvspauling, i am sure you will be beautiful with the Bengals scarf and hat!! I will be wearing a yellow scarf and steelers hat on my bald head😉 Lol. I will be thinking of my fellow BC sister on Saturday;) you get home field advantage😉

    Everyone sounds like they have some good tips. I will be going for treatment 3 on Wednesday. I am finally getting some taste buds back just in time to get them taken away again. I think I will splurge on a banana split myself!!

    Lyra10, thanks for the cleaning tip. I'll check into that.

    Hang in there everyone!!!

  • Noni
    Noni Member Posts: 327
    edited January 2016

    Hi all! Everyone looks so beautiful in their head coverings. My husband and daughter cut and buzzed my head and I am kinda loving it. There is nothing more comforting than a hot shower on a bald head. My hair was so thick that it feels great having this break.

    I had my 4th infusion yesterday and it was the pits but ended up well. My coughing has increased and seems to be more powerful. It's all in my upper chest and at times is very painful. Earlier this week I noticed a bruise over my port and yesterday they had a hard time accessing it. They inserted some type of flush and I had to sit for an hour to see if it fixed things and thankfully it did.

    My MO sent me for a quick chest x-ray to see if he could find a cause for the increased coughing. Nothing concerning there however he noticed that my lungs looked much better than the last scan in November. Happy dance for me.

    He gave me cough syrup with dilaudid which gave me the best sleep in a long time last night. I am usually up half the night coughing. I had been taking cough syrup with codeine and that helped me sleep but did nothing for coughs.

    I have a dozen various head coverings but so far no wig. I much prefer going with nothing so I'm not sure I will bother with the wig.

    Can you believe we made it to January already? December flew by.

  • proctor1725
    proctor1725 Member Posts: 33
    edited January 2016

    All - i wanted to share something with you. Yesterday, i had my hair shaved in a salon I have been going to for about 7 years. My hairdresser tagged me on Facebook (with my permission) after she saw this post. I wanted to share so that we all remember that we can and ARE inspirational to so many people. Stay strong ladies and don't be afraid to put yourself out there. You might inspire someone else!

    Witnessed something truly beautiful today and it really hit home with me. Any of you whom were there, please correct me if I'm wrong:

    I was getting my hair done this afternoon (much needed after the last couple of weeks I've had) and in the chair beside me, a lady sat down who had an appointment with her stylist. The friend who brought her to the appointment was sitting near and they talked back and forth among themselves as the stylist looked over the items the ladies carried with them.

    One could tell she was very nervous in the chair, worried about the youngin' who was in the shop seeing what was about to take place. She spoke of intimate details I won't discuss here, but the talk varied of health issues which had started that day, as well as questions about what would happen next from young family members. I glanced at them from time to time and every time I caught her eye, this lady had a smile on her face. Her friend was positive the whole time, keeping things upbeat and so encouraging. Her stylist was so enthusiastic as well as mine, Misty Ann Svoboda-Beseda. What was a three person appointment very soon became a multi-woman conglomerate as it does many times over in many shops around the world.

    As the process began, photos were taken and this lady's smile was still upon her face. I left before she was out of the chair but as Misty was blowing out my hair and styling mine I watched this lady's remaining hair fall to the floor lock by lock.... I sensed her fear of not being seen as beautiful because she was to have no hair on her head that was hers.

    It has humbled me to my core tonight. How vain are we humans. What we do to ourselves to be that perfect weight, to look that certain way, to strive to achieve the unattainable when there are those who just want to have their own hair on their head!

    I could not leave without addressing this woman. I could not leave without giving her a hug and looking into her eyes and telling her how amazingly beautiful she is. I did not mean for my words to make her cry because they were heartfelt but what she did not realize was .. in that moment she became the most beautiful woman on this planet to me. She taught me so much just sitting in that chair and being herself... Her beautiful self.

    I don't know your name and may never run into you again. Whomever you are ... Thank you for today.


  • PezGal
    PezGal Member Posts: 99
    edited January 2016

    waiting to get admitted into the hospital. So god damn mad at cancer right now...image

  • proctor1725
    proctor1725 Member Posts: 33
    edited January 2016

    Sorry PezGal! Hang in there! Hugs from Texas! Stay strong!


  • Lou53
    Lou53 Member Posts: 81
    edited January 2016

    Proctor, that was beautiful. Made me cry too!

    PezGal, I'm so sorry. I will keep you and all of us in my prayers.

  • Twirp26
    Twirp26 Member Posts: 178
    edited January 2016

    proctor, that is amazing!! It absolutely made my day!! Cherished words!!

    Pezgal, hang in there!!! I will be praying you get better ASAP!! CANCER SUCKS!!!!

    Thinking about you all!!

  • Twirp26
    Twirp26 Member Posts: 178
    edited January 2016

    imagethe latest shirt

  • proctor1725
    proctor1725 Member Posts: 33
    edited January 2016

    Go Twirp! I love it! and love your attitude! Keep it up!


  • Vildanbt
    Vildanbt Member Posts: 32
    edited January 2016

    my Mom got 4 cycle chemo and still going on. She has too much cough but feeling better Prospan anticough medicine. I think it is great to take 3 times daily.

    She has also diffuculties to sleep but refuses to take medicine because She already feels fatigue and does not want more.

    She has also nausea. This cycle She will try Emend. I hope she feels better.

    She does not think about hair because the most important thing is being healthy

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