Starting Chemo in Nov 2016

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  • BG46TN
    BG46TN Member Posts: 286
    edited December 2016

    aterry I also live on Long Island, I haven't visited that site but I think I will...my husband also just got rid of our non stick cookware, we still use plastic for food storage, but don't reheat in them, we move them to glass....

    it is scary the high number of bc on Long Island! ugh


    Becky

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  • IronMom3
    IronMom3 Member Posts: 26
    edited December 2016

    Hi Ladies!

    I'm late to join your group, I started AC+T on 11/30, after having a bmx on 10/31.

    I've been feeling terrible with a lot of nausea, so I'm thinking from reading all your posts that I must speak with my onc about better management for my next round. I'm out of bed today, so that's an improvement.

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  • Leslie2016
    Leslie2016 Member Posts: 316
    edited December 2016

    Welcome IronMom3. I'm surprised they didn't give you a bunch of nausea meds. I'm in Ontario too, and they gave me 3 to take starting the day of treatment and 2 days after as "manditory", with gravol as needed. The 3 meds I have work wonders...I really haven't had any nausea. Maybe it's the difference of being on FEC-D instead of AC+T? I don't now. I'm glad you are feeling a bit better today. We will get through this.

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  • livin-on-a-prayer
    livin-on-a-prayer Member Posts: 14
    edited December 2016

    Hi Ladies, I haven't posted a comment since Nov. 22 and just finished reading through all of your great discussion points. There are so many important ideas and remedies shared here. My brother in-law is a head pharmacist and intrigued with some of the discussion points - especially the neulasta ideas.

    BG46TN- I am scheduled for another echo after my third treatment. After my first echo I met with a cardiologist that stated my heart was functioning at 53% (normal range is 55-60%), plus they diagnosed me with a leaky valve - who knew? I have always been very active and thought very heart healthy with a lower healthy blood pressure. However, I have a rapid heart rate, especially for a petite woman (I'm calling it a humming bird heart), which means my heart is working too hard. So now they have me on a beta blocker to protect my heart from the damage of chemo. The problem is that this also lowers my already low blood pressure. Did a cardiologist meet with you and let you know if there are any unusual features of your heart that they want to watch?

    Nfullblume - I love your energy and positive nature. Your picture of your shaved head gives me hope. It is so funny to be fearing to lose your hair and in the next breath just wishing you could get the inevitable over with! I am also intrigued with the juicing ideas.

    PMevan50 - We are both only estrogen positive. Do you mind if I ask if you know what percent estrogen you are? I am only 23% estrogen and my onco score came back off the charts high.

    Some of the themes in so many of the messages have been about neulasta placement. I only have had one round of AC and I also had the Neulasta patch placed on my stomach and had little to no problem with pain.

    As far as water with electrolytes SMART water has been a good choice for me. For some reason it seems to go down easier than regular water when I am getting dehydrated.

    So 3 questions for the group - Like many of you I experienced the chemo fog significantly and slept quite a bit from day 2-5. Did any of you have problems with focusing your eyes during this time or ongoing with chemo? Then once out of the fog I am having difficult sleeping days 6-10 unless I take my lorazepam -even though I don't need it for nausea. Has anyone dealt with significant insomnia?

    Lastly, I had a blood port draw a week after my 1st chemo and Ne# (Neutophil) level was critically low at 0.1, so I was told to avoid public places because I was very susceptible to catch other peoples' germs. Glad I took a leave from my elementary teaching position. So now I feel great and can't go anywhere hoping my levels rise by Dec. 6 so I can get my next round. Has anyone else experienced low counts?

    I feel so thankful for this forum so we can learn and support each other!

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  • Pamela23
    Pamela23 Member Posts: 510
    edited December 2016

    Livin-on-a-prayer--I also had trouble with focusing my eyes the first few days. I even took out my contacts and wore glasses one day but it didn't help. I couldn't look at my computer without feeling like I needed to step away from it after a few minutes because I couldn't focus correctly on my emails. I noticed you said you were taking lorazepam. That's an anti anxiety med and I found before my first round when I couldn't sleep well, that my xanax helped me sleep. I was worried I would depend on it so stopped and haven't needed it since. I almost felt like my body was getting used to it and I wasn't sleeping as good with it as I had in the beginning. Just confused me when you said something about taking it without having nausea. Is it an anti nausea med too?

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  • Pamela23
    Pamela23 Member Posts: 510
    edited December 2016

    Ironmom--I agree with you, talk to your MO. Mine told me before my first infusion that there shouldn't be anything that keeps you in bed. The anti nausea meds, if staggered throughout the day, should keep the nausea at bay. Doesn't mean you won't have other GI problems (those meds cause constipation which I have never experienced until using them) so make sure you have a stool softener or gentle laxative on hand!

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  • livin-on-a-prayer
    livin-on-a-prayer Member Posts: 14
    edited December 2016

    Pamela 23 thanks for responding. My nurse said that the Lorazepam could be used for in between nausea as well as help me sleep. I also am afraid of getting too hooked on sleep meds and tried to skip it a couple nights and had 2 horrible nights of insomnia and strange dreams with waking up very anxious and teary.

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  • BG46TN
    BG46TN Member Posts: 286
    edited December 2016

    living on a prayer....no I didn't meet with a cardiologist, my MO just said my echo looked good so I was cleared to start chemo...the nurse just said they like to check it before every odd chemo to be sure its still in good shape LOL

    I didn't really have any issues with my eyes focusing but I wear contact lenses, I find they get dry more often though...

    I had the Neulasta shot on my arm the first time around and had a LOT of bone pain...trying my belly this time, I just took it off about an hour ago...so we'll see tomorrow and Monday how I feel.

    The nurse (and a couple other patients yesterday ) were talking about SMART water, I think I need to get some...I'm sick of just plain water and need more electrolytes. My dr doesn't make me go back on opposite weeks for blood draws, the nurse was asking if I went....she said probably because I am "young" (46) compared to many older women at that center I guess...my numbers were good yesterday, thank goodness! I don't want anything to make me miss an infusion and prolong this...

    I'm still pretty depressed about my hair....there was a lot on my pillow this morning, and when I took my scrunchie out (I sleep in a pony tail) I started to cry :-( this is really hard...I told my husband he needs to cut my hair short tomorrow, I get too sad getting clumps in my hands...I'd rather just start wearing my wig and pretend its not happening LOL

    Becky

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited December 2016

    Why all the neulasta shots? Is it for white counts. Mine got to 2.3 but no shots. Wore a mask when I went out and avoided people for a week.

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  • pmevans50
    pmevans50 Member Posts: 54
    edited December 2016

    living-on-a-prayer - This is taken from my biopsy interpretation and diagnosis:

    ESTROGEN RECEPTOR (clone SP1):

    % positive tumor cells: 100%

    Staining intensity: STRONG

    Interpretation: POSITIVE

    ESTROGEN RECEPTOR INTERNAL CONTROLS: PRESENT

    My oncotype DX came back in the mid 30s.

    As for chemo fog I only experienced that after the 1st chemo session and have been pretty good with just constipation after treatments due to anti-nausea meds. I've been very lucky. Although, I got a nasty chest cold I'm having a hard time shaking after going home for Thanksgiving, shopping, going out to eat, going to a movie, etc. I'll be staying close to home and not doing as much for Christmas. I asked my MO about sleeping because I get very little of it and she suggested Tylenol PM, so I'll give it a whirl.

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  • BG46TN
    BG46TN Member Posts: 286
    edited December 2016

    Dianarose, yes the Neulasta is to build your immunity...I have an on body patch that goes off 27 hrs after chemo...some people go in the next day for a shot....it builds the white blood cells in your bones (why you can get bone pain)

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  • Hope88
    Hope88 Member Posts: 55
    edited December 2016

    Evening Ladies,

    Living on a prayer, I was very fatigued and sleepy after my first chemo treatment, which seemed to get worse from day 2 to 4. I went back to work on day 4 and switched to a non-drowsy anti-nausea med which I think helped a lot. Unfortunately my sleep pattern for the week was totally sleep by 9:00, then wake around 12:00, then awake until 3:00, and back to sleep til 5:30 or 6:00. This is despite different kinds of sleep medicine. From what I have read, sleep problems are pretty normal. My blood work before chemo showed a slight problem with anemia, but that is also common with chemo. Hope you can entertain yourself while stuck at home.

    I am also an elementary teacher, but I still am not sure if I will take any extended leave. My MO said it is totally up to me and she will support any decision I make. I went to work all last week with no mask and stayed away from any sign of sickness, but felt a little cold coming on by Wednesday. I got lots of rest and was able to do chemo on Friday.

    Becky, my hair finally started shredding today. It is very sad. I kind of hoped It wouldn't really happen to me, but they say de-Nile is a river in Edypt. Hang in there we are all "losing" it together!

    Keep the faith all.


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  • Dianarose
    Dianarose Member Posts: 2,407
    edited December 2016

    hope88-sleep is the worse part. Started getting 4 hours and over five weeks worked up to 6 but wake up in between. That's taking one and a half of Xanax too. When I did chemo four years ago I never slept. The cure is the radiation that follows chemo. Then all you do is sleep

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  • BG46TN
    BG46TN Member Posts: 286
    edited December 2016

    Dianarose why does radiation make you sleepy? just curious....I'm not sure yet if I will need radiation...I thought it was easier then chemo? no?

    Becky

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited December 2016

    BG- not sure why radiation makes you tired it's just one of the side effects I guess. Plus you go five days a week. When they radiated my chest wall I got blustered on my back and had to use burn cream. I had it in 2004 on the right side and in 2013 on the left. Skin burns and being tired are the two side effects.

    I wish you ladies would ask for the chemo sensitivity testing to make sure you are on the right chemos. After two rounds of the A/C I was glad to get off it as we know know it's not a benefit. It pisses me off how many docs still guess at this when there are ways to know without putting you through hell and itsnot even going to help.

    Have a great day ladies

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  • LatinMixy
    LatinMixy Member Posts: 31
    edited December 2016

    Adding to the Neulasta discussion,

    I get the injection in the mail, and do I give it to myself in the tight. I have never felt a SE from it. I also followed my pharmacists and MO advise of taking Claritin since the day before my first round without stopping. My liver enzymes are back to normal, thanks God! They will continue monitoring them for peaks and valleys. I assume my stint at the ER had a lot to do with it. Also, I visited my surgeon and the little lump I found in one of my breasts is benign. Lots of good news, finally!

    Sleeping has been a huge challenge. My MO recommended taking an Ativan at night. It kind of help, but I still cannot sleep as good as I used to. Oh well, another SE of cancer, chemo, etc, etc, etc. I don't think I will continue with the Ativan intake, I know so many people that have fell of the rails with it. Scary.

    DianaRose - welcome to our group! sorry for the circumstances in which you are back. We are a kickass team, and we will all beat this.

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  • Hope88
    Hope88 Member Posts: 55
    edited December 2016

    Hey ladies,

    Dianarose what's the chemo sensitivity testing called? I did ask my MO if the AC was actually working and she felt my lump to see if it had shrunk any. Then she said she thought it shrunk a little bit, but it was only after one treatment. She said she would really tell after the second treatment. But I would like to ask her about this test so that I don't keep taking a chemo drug that's not useful. She also mentioned that some people shrink their tumors more with that Taxol, so I thought why am I taking AC then? Anyway, thanks for giving me something to think about.

    Rock on

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited December 2016

    Hope- on the paper work it says Nant Health.

    GPS cancer

    Quantitative Proteomics report

    Laboratory provider-NantOmics

    9600 medical center drivRockville MD

    Just google chemo sensitivity test for breast cancer. Especially with ILC. Whole different animal

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  • aterry
    aterry Member Posts: 290
    edited December 2016

    Becky, more should be done on LI regarding the water. The breast cancer problem has been documented for a long time w/o corresponding action. Of course you're sad about your hair. I didn't expect it but I felt better after I had my hair cut very short--which was a transitional step--and then had my head shaved. I still get a twinge when I see my bald head in the mirror but not as sad as I expected. I do find myself thinking more than is practical about which hat/scarf I'll wear on Christmas Day when we'll have guests. Today my scalp is itchy so I should probably figure out a cream to use--I know there have been mentions on this forum so I'll go back and find them.


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  • aterry
    aterry Member Posts: 290
    edited December 2016

    Dianarose, it's possible that the sensitivity testing is still in the clinical trial stage and that only centers involved in trials are offering it, which your center may be. It sounds like your MO is very involved in research and I'm glad you're benefitting from her care & innovation. My MO is doing research that will eventually lead to better tailoring of chemo for TN patients; she hopes to be able to identify subsets. That research won't help me in the current treatment (because research is slow) but if I were to get a recurrence it would.

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  • Sorella
    Sorella Member Posts: 107
    edited December 2016

    Dealing with our hair loss is no simple task. At 60, before my diagnosis, I was trying to decide when to stop dying my hair and how to go about it without the skunk look. This obviously solved that. I think I will wear it really short when, God willing, I am through this. Thinking about head atire is a great way to keep ourselves cheered. There are some gun ideas on pinterest. Hang in aterry, and all you gals (posting from my phone which makes it hard to go back)

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  • BG46TN
    BG46TN Member Posts: 286
    edited December 2016

    Yesterday I received my FREE scarf from Good Wishes! It is so nice and they even sent a beautiful hand written card signed specifically to me with notes from all the workers! So sweet and caring!

    If you haven't already go to www.goodwishesscarves.org and sign up to get a free one! there are lots of patterns to pick from!

    Becky

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  • Nanpop
    Nanpop Member Posts: 75
    edited December 2016

    Hi Ladies,

    Is anyone using special shampoos? I was reading up on Weleda skin products.It is recommended by Dana Farber Institute. I could find the blogs about hair care. This is a very active group. I cut my hair short. I couldn't cut it all, although it's falling out.

    What are you doing about brows and lashes? I need to keep up appearances for work.



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  • aterry
    aterry Member Posts: 290
    edited December 2016

    There is an excellent article in today's NYTimes about the benefits, risks and tradeoffs of emerging cancer treatments:

    http://www.nytimes.com/2016/12/03/health/immunotherapy-cancer.html?_r=0

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  • Sorella
    Sorella Member Posts: 107
    edited December 2016

    I forgot to add, bees wax helps my scalp!

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  • Hopfull2
    Hopfull2 Member Posts: 418
    edited December 2016

    Nanpop hi. I'm using Brian Joseph's eyebrow/eyelash gel. Just go to thier website. And as far as shampoo. I ordered my organic shampoo from Amazon.It had great reviews and is for thinning hair.

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  • Nfullblume
    Nfullblume Member Posts: 171
    edited December 2016

    Nanpop and Hopeful, I'm using Brian Joseph's brow gel too. I also purchased his chemo shampoo, though I haven't used it yet. I take a tablespoon or so of organic coconut oil and rub that on my scalp. It works well and won't clog your pores. 😃

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited December 2016

    Aterry- I think this type of testing has been around for awhile. You do need a tissue sample of course like you do for the Onco type testing. I would ask your oncologist.

    I totally hate wigs. They hurt after awhile. If you search headbands with hair there are some you can wear with a hat or full hair attached tothe headband. I prefer these. They are inexpensive too

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  • Hope88
    Hope88 Member Posts: 55
    edited December 2016

    Ladies,

    Nanpop, did you look into that free class from the American Cancer Society, "Look good, feel better?" I go on Dec. 12th and they will give lots of tips on makeup and $400.00 of free makeup. I visited the local chapter and got a free wig and lots of knitted hats. They even gave me two blankets for chemo days!

    My hair is now shredding, but no bald spots yet. I am afraid if I continue with my hair, it will keep shredding and falling out at work so tempted to just cut it off already.

    Keep hope alive!

    Gai

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  • amw5
    amw5 Member Posts: 189
    edited December 2016

    I hope everyone is doing great. I'm doing well. My SEs have been minimal, and I'm so happy about that. I do plan on going into the office this week, and I'm so looking forward to it.

    I attended a pediatric cancer event yesterday (as an honoree) with my husband and one of my best friends. It was such a huge success. It was also very heartfelt, heart warming and quite emotional (as some of the pediatric patients had already earned their wings). They have the bravest mothers and family members. I will forever be touched by what I experienced at that event yesterday. All of the love and hugs. Sigh...

    Afterwards, the same bestie and I went to the Kennedy Center to see Dianna Ross perform with the National Symphony Orchestra. It was the first time I've ever seen her live. We purchased these tickets way before my diagnosis on October 24, 2016. I thought I would be low on energy from chemotherapy on Tuesday, November 29, but thankfully I have had a very good week (second treatment - very minimal SEs). My husband and I had a nice and relaxing day at home today (football, naps, rest, relaxation, computer time). I hope you all have enjoyed your weekend.

    (((hugs)))

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