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Starting Chemotherapy March 2018

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Comments

  • May07
    May07 Member Posts: 81

    I just got back from chemo class with my nurse who is awesome :) she explained everything to me in detail and somehow made me feel more calm about all this...they prescribed steroids, and anti nausea medication. And she told me to take Claritin 1 day before and then day of and 2 days after the neulesta injection. She told me to get a soft toothbrush and rinse my mouth 20 minutes after eating with salt water or biotene mouthwash. She also told me to take the anti nausea meds as soon as a feel a little something and as a said if I get any indigestion to get some Prilosec. I will be making a trip to CVS this weekend, got a coupon just In time :)

  • TheSnowQueen
    TheSnowQueen Member Posts: 4

    BonnieML,


    Thank you for the advice in your post ♥️

    Today I was saying/thinking “I have to get chemo tomorrow”, dreading it. You are absolutely right. I’m alive and well, I get to do it! ((HUGS))

  • NVDobie
    NVDobie Member Posts: 122

    Hi, GBL1lady

    Looks like we have the same Oncotype score of 27. Oncologist said I have an choice for chemo or no chemo, decided to go for it. We also started chemo the same day. However my 2nd round chemo will be on 29th, so every 3 weeks to the day.

    Hi, NoteRed

    Drink a lot of water beror your chemo appointment which will make it easier to find your veins when they do IV.

    Bring layers to chemo and dress warm. Find out whether they will give you ice gloves or not which will make your hands cold but good for protecting nails. Hospital in Vancouevr offer blankets

    Also bring some water or juice you can sip on. I found it most convenient to drink out of straw vs. a cup when my hand is hooked up. You can also ask nurse for water and etc.

    I also brought phone to watch video or something to distract me for 90 min.

    It wasn’t too bad for me. Just mild headache for the first 30 min.

    Tons of water first few days after to help flush chemo drug out. Watch out any body fluid and etc. flush toilet twice to get ride or chemo toxins and make sure it doesn’t splash anywhere that could impact your family members for the first 48 hours

    There are some Good info on breast cancer.org. Or search chemo tips. Such as

    https://www.cancer.net/navigating-cancer-care/how-cancer-treated/chemotherapy/what-expect-when-having-chemotherapy

    http://www.bccancer.bc.ca/health-professionals/education-development/nursing/chemotherapy-patient-education#Materials

    Click the PowerPoint material link on 2nd website

    Ask away if you have more questions. Also try ask when hospital has someone can speak your mother tongue if you want.

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119

    Hi ladies! 

    So many stories shared - thanks to everyone for the continuing updates, perspective, and reminders of the reason we are all doing this.  For our newcomers, hope you find this thread helpful and supportive.  Everyone's honesty and openness it amazing.  

    Had my second round of TC yesterday, and the day ran pretty similar to the first.  Cytoxan first and then Taxotere to follow - nurse stayed with me for about 15 minutes when the Taxotere started to watch for any reaction - again, went fine.  I am on a schedule of steroids day before, then steroids and Claritin day of (with Zofran given in the hospital prior to the infusion for nausea), and then today am on steroids, Claritin and Compazine, which I will take for 3 days.  Last time this regimen really worked for nausea - hoping it follows suit!  We had a family favorite last night "mashed potato bar" - big pan of mashed potatoes and then just lots of toppings and gravy - something for everyone and easy to put out and clean up.  The only difference for me from round 1 was last night I got really tired early - so just laid down on the couch and chilled/slept.  Other cleaned up as I had already put everyone on alert that the "kitchen fairy" was off duty again for the next week.  Smile

    I never stopped Biotene rinsing since round 1 - so it's carrying over into round 2.  The one thing I noticed was when I got home yesterday and showered, a ton of my remaining buzzed hair came out - I still have a crown in the back and this weird little widow's peak in the front ? - but it's all finally coming out now.  Walked just a little over a mile on the treadmill after I got home and then took my mom grocery shopping.  I'll listen to my body and build as the days go on, but making sure to get at least some real exercise in each day.  Today hoping the steroids keep me motivated - of course our dishwasher broke earlier this week and the repair estimate was just shy of a new one so we're heading out shopping later this afternoon.

    Neulasta shot this afternoon - plan is to stay on the Claritin for a full week this time to see if that prevents the back spasms I had last time.   The Neulasta can cause some pain, but pre-chemo day I had a really strong WBC count, so in my case it definitely seemed to help - the onco nurse said it was "doing its job."  

    Off to hydrate, hydrate, hydrate!  Wishing everyone the best with treatments and a positive Friday.  

  • BonnieML
    BonnieML Member Posts: 13

    NVDobie - great info thanks for sharing.

  • NoteRed
    NoteRed Member Posts: 59

    Hello again,

    Thanks NVDobie for all the info. The truth is that I feel very afraid. Not only about the chemo. You see I've got my results the week before so I'm terrified. What is frightening me the most is the grade (3) and the 7 nodes that have been affected. Googling has not helped.

    The good thing is that I'm having treatment in my country so I'm speaking my language

  • BonnieML
    BonnieML Member Posts: 13

    Have

    Only

    Positive

    Expectations


  • BonnieML
    BonnieML Member Posts: 13

    My party has been moved up to this Monday, 3/26 and I get to have my first treatment to begin the obliteration of the stuff from my body. I am really scared, but also ready to start this journey. Reading every ones experience is really helpful - we can all do this!!!

  • Hobbyhorse
    Hobbyhorse Member Posts: 7

    Hello ladies...I just came to vent. I don't really have anyone else to talk to my frustrations about, and my husband certainly does not understand how I feel, since he is a Man.

    I had my first chemo on March 6th ( my 50th birthday ) ..everything went well the day of chemo, lots of energy.

    Went to work the following day, which was a little harder in the afternoon, but I made it thru it. 2 days post chemo I was able to work half a day due to onsetting fatigue. Day 3 I was in an all day seminar and probably overdid it and did not drink enough. So by that Friday night I was in bed and pretty much did not get up again till Monday ( due to being weak and dizzy ). I was unable to eat anything because of severe stomach pain and could not drink anything due to everything tasting like mud. I also developed severe diarrhea.

    Monday I went to the cancer center and got some hydration, which made me feel a little better, but by Tuesday evening I was so weak and had passed out 2x, that I decided to go the ER.

    Diagnosed with neutropenic colitis and 0 white blood cells and admitted...no solid food for 4 days and finally released after 6 days there.

    I am now very weak. Have no stamina, intermittent diarrhea and also was told I could not go back to work for 6-8 weeks. I worry about money to pay the bills and my insurance, as my husband is now the sole provider ( I do not have disability insurance ) My hair is falling out, I feel soooo tired all the time, and now have the 2nd chemo coming up next Tuesday.

    I can't work either of my 2 jobs, can't do any of the volunteering I usually do, and won't be able to ride my horse for the extended future.

    I guess the reality of it all has finally hit me and I just don't know how to get thru another day, never mind the next 5 chemo treatments.

    Sorry to be such a downer, I am usually a very positive person.... but it has finally become too much for me to handle alone without talking about it to somebody.

    Thanks for listening...I feel a little better now



  • moth
    moth Member Posts: 3,293

    HI Hobbyhorse, sorry you're having a rough time. I too got hospitalized after round 1 with febrile neutropenia. I'm glad that they were able to treat you but sorry to hear you're continuing to have gastric problems. (Has your team helped you with diet planning & perhaps adding yogurt or similar to try to rebuild your gut flora?)

    One thing that I've thought about a lot since I got hospitalized & got out, is that I believe our perceptions of cancer treatment have become distorted. Having cancer, dealing with the treatments, undergoing chemo - this is all hard on our bodies and our minds.

    We need time to rest and heal.

    I was quite upset to learn that estimates of death from febrile neutropenia in the oncology setting are 10-20%. This is serious stuff. My family & I continue to wonder if we could have prevented my neutropenia if we'd not been lulled into a sense of complacency because we were told to 'just live your life normally & wash your hands lots' during chemo.

    It wasn't too long ago (& still is true in some countries) that chemotherapy was done inpatient in hospital. The idea that we're supposed to just carry on as if we've got nothing more than some minor condition like a cold or a broken toe or something similar is just wrong IMO.

    This is a serious, life threatening disease. The treatments affect our bone marrow and make us immuno-compromised. We can't go back to as we were - we just can't - not right now.

    You will make it through the next 5 treatments I'm sure. But yes, this has to take priority, and everything else becomes secondary because we need our energy to heal from having cancer & undergoing chemo. I radically changed my expectations of what I would do during treatments & decided to focus 100% on healing. If I get days of energy and feeling well when I can accomplish other things, well, that will be a nice bonus but otherwise, those things will just have to wait.

    I hope you can find the support from your family & friends to help you through this time. Best Wishes!

  • Sidalee
    Sidalee Member Posts: 113

    Hobbyhorse I am so sorry you're having such a hard time. I'm glad you came here and vented to us, please do it as much as you need to. Sending you hugs and healing thoughts.

    Moth: A thousand times YES. It is very misleading that we are told to just go back out and live life as if this isn't happening. I feel like reality struck us very hard this past week with my trip to the ER also. We cannot just shake this off and we have to prioritize our health above all else. I feel like my life has been hit with a pause button, but that's what I have to do.

  • Hobbyhorse
    Hobbyhorse Member Posts: 7

    Moth and Sidalee..thank you for the kind words of support. It feels good to hear that it is OK to be sick during chemo, and to just take care of oneself first.

    I was given probiotics to help with my gut flora, but now am on antibiotics post hospital discharge, which in turn has given me a yeast infection and requires me to take another pill for that.

    I said to my husband today that I can understand how elderly people get confused by their medications.... I am now taking a blood pressure pill, anxiety pill, probiotic, antibiotic x 2 and potassium for breakfast- antibiotic x 1 and antifungal for lunch- antibiotic x 2, Prevacid and sleeping pill before bed...add to that the steroid around chemo time and the anti nausea medication....hard to keep track of all that.

    I actually have a good appetite today, so I am making Spaghetti for dinner, with Garlic bread and a nice salad...it's the small things in life that count now. ..I am excited to eat a good home cooked dinner after feeling so crappy for so long.

    I think that the world as a whole does not understand cancer treatment...just because one of your aquaintances worked full time thru all her chemo does not mean everyone will be able to do that. I am running into that right now where people just asume all is OK with me. But hey...who cares what people think.. I can only do what I can ....the rest will have to wait for a better day.

  • Hobbyhorse
    Hobbyhorse Member Posts: 7

    Moth and Sidalee..thank you for the kind words of support. It feels good to hear that it is OK to be sick during chemo, and to just take care of oneself first.

    I was given probiotics to help with my gut flora, but now am on antibiotics post hospital discharge, which in turn has given me a yeast infection and requires me to take another pill for that.

    I said to my husband today that I can understand how elderly people get confused by their medications.... I am now taking a blood pressure pill, anxiety pill, probiotic, antibiotic x 2 and potassium for breakfast- antibiotic x 1 and antifungal for lunch- antibiotic x 2, Prevacid and sleeping pill before bed...add to that the steroid around chemo time and the anti nausea medication....hard to keep track of all that.

    I actually have a good appetite today, so I am making Spaghetti for dinner, with Garlic bread and a nice salad...it's the small things in life that count now. ..I am excited to eat a good home cooked dinner after feeling so crappy for so long.

    I think that the world as a whole does not understand cancer treatment...just because one of your aquaintances worked full time thru all her chemo does not mean everyone will be able to do that. I am running into that right now where people just asume all is OK with me. But hey...who cares what people think.. I can only do what I can ....the rest will have to wait for a better day.

  • Downdoggie
    Downdoggie Member Posts: 51

    Hi Warrior Women,

    Both my oncologist and my onco nurse said, just live your life, don't wear a mask or live in a bubble. BUT I'M NOT living with normalcy! I'm freaked out about germs everywhere- work, the gym, yoga studio. the lab, etc. I felt good the other day and went to a coffee shop to get out of the house and grade papers. A father and son sat next to me and started coughing and I bolted out of there. I have a mask in my purse. None of this is normal and to pretend it is will not help me with mindful self-care.

    My blood work was good and I had my second chemo infusion yesterday. All went well. Faster and no reactions. I was awake all night. I guess due to steroids. Then had to get up early for port surgery. It was a bigger deal than I thought, but not painful. Starting to hurt now but managing with Tylenol.

    I had my hair cut to about an inch, as an easier transition to my hair falling out, which I've read happens 15-18 days after first chemo, so that's next week. Got a nice selection of hats, scarves and wraps so I'm as ready as I'm going to be.

    It feels like a very cancer occupied week. And I'll have a year of infusions, so all feels like a bit much right now.

    Thanks for reading, listening and sharing

  • Bec-Ky
    Bec-Ky Member Posts: 195

    I start chemo on March 28...TC.....I'm scared as hell.

    If I do nothing except radiation my chances of cancer coming back are 21%

    If I do radiation and take tamoxifen (an estrogen blocking pill) for 5-10 years, my chances are 14% recurrence.

    If I do chemo, radiation, and tamoxifen my recurrence is about 8-9%

    So...although there is a very high chance already of no recurrence... I am going to go ahead with chemo just to make sure I'm doing all I can. I have 2 wonderful girls (and of course 3 stepsons) and a great husband and family and awesome friends.... And I would hate for cancer to come back and feel like I never did everything I could. Yes, it can still come back anyways... But at least I'll have the peace in my heart to know I tried and did everything I could.... Rather than regret!

    All good

    ❤️

  • Bec-Ky
    Bec-Ky Member Posts: 195

    BonnieML


    Love the replace" I have to" with..... "I get to"

  • NVDobie
    NVDobie Member Posts: 122

    NoteRed: understand you are scared. It’s a scary thing. but like BonnieML said, think positively. As fear or panic certainly won’t help the situation. Stress will not help and potentially make it more challenging. Think and live positively is a MUST as we go thru this. You should focus on positive aspects and seek to find them in everything. I.e. tumor size is smaller, early stage. This is also one of most studied and have the best prognosis among all big C’s. We need the positive energy to help with the fight and healing process.

    DO everything you can to support the fight and healing. Diet, exercise etc.

    HobbyHorse

    We are here for you. Take one day at a time. We are stronger than we think, we are here when you need to vent. First round chemo is almost at the end for me. my husband reminds me that’s every goes by I will feel better as chemo drugs are leaving my body. Counting it down, a few months from now, we will come out of this knowing we did what’s necessary to beat this

    Moth

    Hope you are feeling better now. Completely agree. This is no joke, we should think positively but take this seriously.

    Chemo is probably one of most serious treatment that we need to change our lifestyle to accommodate during the process.

    I have been avoid crowds, wear mask when I go to grocery store ( not busy hours), wear gloves when I go out to walk my dogs and shopping. I was extremely careful for the first week to avoid infection, germs, bacteria.

    Thanks for sharing the stats on neutropenia. I wasn’t aware, so definitely will do more reading on this. Nowadays it does seem we need to pull the information out of Doc. My medical oncologist said less than 1% in real cases but they tend to communicate 1% as the real serious issue such as death.

    Bec-Ky

    You are bang on. We do what’s possible and available to maximie our chance of disease free. I chose chemo even though my Oncotype score was intermediate. Same idea.

    I did good amount exercise daily leading up to chemo to prep myself. Many of us finding the treatment session and process isn’t as bad as we thought. Manageable. But still do need to take it seriously as Moth and few others mentioned. So make arrangement to accommodate upcoming treatments is good idea to consider.

    I had my house scrubbed clean the day before chemo to minimize germs and bacteria.

    We will be here to support you thru the process.


  • Steph74
    Steph74 Member Posts: 70

    Bec-Ky...similar situation with me..Oncotype was 26. If I do nothing chance of reoccurrence is 34%, tamoxifen only 17% and adding chemo to the mix brings it down to 10%. I felt the same in that I had to fight this with everything I had while I can, with no regrets in the future. I have a 7 year old and 1 year old at home that I want to see have kids of their own one day! Good luck with your treatment...we are all in this together!

  • Hobbyhorse
    Hobbyhorse Member Posts: 7

    Thank you all for the support.

    Feeling OK this morning and plan to attend a baby shower this afternoon. Of course I will take all precautions not to catch anything, as I do not want to be sick for chemo on Tuesday.

    One thing I have realized is how many small thing there are that are really no big deal ....house dirty... who cares. Laundry not folded..who cares. Dishes not in dishwasher..same thing. Give yourself permission to say " I just can't do it right now " and don't feel bad about it. My goal yesterday was to clean the living room, but it never happened.....I did however wash 2 loads of laundry, changed the sheets on the bed and cooked dinner....small steps and just do what you can.

    Bec-Ky......hang in there. It is scary, but don't be afraid to ask your Dr questions. The Nurse Navigator is great too, and of course we are here for you. ( I am in Wisconsin as well, so keep in touch )

  • May07
    May07 Member Posts: 81

    bec-ky and Steph74, my oncotype was 37! And the tumor was only 4mm. I wasn't even supposed to get the test done (oncotype cut off is 5mm). My oncologist had a feeling she should try and see if the company can run it...and here I am...if I do nothing my chance of recurrence is 50%! With tamoxifen alone it's 25% and with chemo it's 9%......although I'm terrified of chemo it's something I have to do. I start Monday

  • Bec-Ky
    Bec-Ky Member Posts: 195

    Oh I'm sooooo excited to meet all of you. Never been so much more excited to talk to strangers than now... 😁 you are all so reassuring and it's sooo nice to find a few of you with almost identical situations /stats.

    I just put 2 wigs on hold so that I can wear them for work and being out and about. That's a very emotional feeling. But wow, the wigs were soooo awesome!

    I get half my hair chopped off on Monday. 2 days before my first chemo. I want. To enjoy a radical fun change for a little bit before it falls out, and since I've had long hair forever and never really changed it.... Now IS DEFINITELY THE TIME!

    Have a great weekend!

  • jstarling
    jstarling Member Posts: 137

    I start Chemotherapy this Wednesday. TCH for six treatments, three weeks apart. Then continue Herceptin for a year. It has been good to read about your experiences. I am anxious, but eager to begin to heal.

  • NoteRed
    NoteRed Member Posts: 59

    NVDobie, thank you so much for the good vibes. And all of you really. I really believe that good psychology helps a lot , I 'm really trying but its not easy ...yesterday at work I felt so stressed...the thing is I dont have the "luxury" right know to take some time of, so I have to talk with my supervisor (a very difficult person) to find a solution

  • persnickety70
    persnickety70 Member Posts: 31

    Day #10 post chemo here....if I hadn't caught a wicked cold at about day 5, I don't think i would feel that bad. Fortunately my white count was good at day 7, so hoping my "usual cast iron immune system" holds true. My tongue feels raw and sensitive, and anything carbonated is like battery acid. I did get the worst heart burn ever - zantac did nothing. I highly recommend taking some prilosec early. My index finger and thumb are slightly numb and tingling....I hope that is not a permanent thing. They did cold pack my hands and feet during docetaxel.

    I see so many women opting for mastectomy. My surgeon and my oncologist both told me it would not increase my disease free survival, and that recovery would be harder, and that reconstruction often does not go well. It still makes me nervous that I am carrying 2 ticking time bombs on my chest.

    Bec-ky and May - I am with you on the chemo shock! My initial diagnosis was DCIS, and after I got done with freaking out about that, they changed it to IDC (2.1 mm, found on deeper sections when they went back to run the hormone receptor studies, because someone didn't order them the first time), then found out HER2+, then found out there was a 2nd 6 mm tumor that didn't show on mammo but did on MRI. My oncotype was 25, so sent off mammaprint, which came back high risk. They told me I had a 30% chance of recurrence in 5 years without chemo, and 5% with. I have a 14 and 11 year old daughters, I just don't want to look back and say I didn't do everything I could to prevent this coming back. I have a friend on FB who just posted some quack naturopath link about how terrible chemo is, how it doesn't work, and how if she had cancer, she would treat it "naturally". I just unloaded on her. I regret it now, but it was satisfying at the time. Until you have stared down a cancer diagnosis, you have no idea what you are talking about.

  • lavettetn
    lavettetn Member Posts: 5

    Hi,

    I have been reading different posts since I was told I have breast cancer. I am trying to learn everything I can about everything - tests, type, stages, grades, treatments, side effects, emotions, etc. I have my 1st chemo treatment (TCHP) on Monday. I am nervous, anxious, and dreading possible side effects. My mom died from colon cancer 11 years ago and I remember how hard chemo was for her. I know that the chemo meds are different for the different cancers but she went through all the possible side effects from the chemo meds she received.

    It helps reading everyone's post. I am trying to prepare for what's to come. Thank you all for contributing to these forums. It definitely helps us/me to get through this.

  • helenlouise
    helenlouise Member Posts: 363

    Hi all,


    I am day 7 of cycle 2 of FEC. This week has been very different to the first week of the first cycle. The first cycle I was pleasantly surprised at how few side effects I had. It all seems quite manageable. The breast care nurse said the first cycle sets the scene for the following cycles but I must say this week has been quite onerous.


    My stomach (read bowel) is very unhappy although my appetite is good. Energy is waning. Sleeping well. Finding it difficult to focus at times. Made some 'not like me' mistakes. Head is sore and wigs, scarves and hats are very uncomfortable. Hoping when the stubble is gone headwear will be cosy. It is fall here so I will be looking for warmth soon. I think the reality of this diseases / treatment has kicked in and I am feeling a bit depressed. I know it will pass.


    I am ever amazed at how wonderful people are. From you here on the forums to my family, friends and even acquaintances. People are so caring, kind and helpful. It really is inspiring.

    Looking forward to reading your posts.

    Best wishes to all.
  • NVDobie
    NVDobie Member Posts: 122

    Hi, lavettetn

    We are here for you, each person reacts to chemo differently. I am day 14, hair starts to go here and there. But chemo wasn’t too bad, some acid reflux, changed in taste, some pain from Filgrastim shot(for WBC), Tylenol took care of it. That’s about it. Totally manageable. Stayed in for a few days at beginning, then most of the days I was able to walk around. But I was super careful to avoid any sources infection.

    Hope yours will go smooth and less side effects.

    HelenLousie

    You are at cycle #2, so counting down for you. Good you are sleeping well and have appetite. We need both to support us, sorry to hear your head is sore. I am heading there as my hairs starting to go. I have bought 100% cotton or bamboo Hats from headcover?, soft ones. Also have silk scarf on standby, all in the hope to help me manage thru the hairless transition.

    Hope the days go better for you from this point on. You are over the toughest part of the cycle

    Also hope you worry less about “not you” mistakes. Nothing more important than you feeling comfortable and rested, all other things will take less priority or importance.

    Here for you.


  • Bec-Ky
    Bec-Ky Member Posts: 195

    The lady at the wig place today told me if I was going to shave my head before all my hair was gone.... To NOT shave it bald. She said to shave it with a #3 attachment thing on the clipper. Otherwise it's so short it will be sore as the hair is pressed on, for example your pillow. It will already be starting to be sore and that will exacerbate that pain. If you clip it short... With the #3 attachment... It will at least be able to lay flat and be more comfortable when laying down and such... Before it all falls out.

    Hope this helps some of you! ❤️

  • May07
    May07 Member Posts: 81

    bec-ky are you cold capping?

    Persnickety70, ask your oncologist if you can take vitamin B6...its supposed to help with neuropathy. Also I am being treated at Sloan Kettering and I saw an article in the waiting room that stated some research was done on women who do acupuncture during chemo and apparently they have less side effects. It is something I’m going to ask about at my first chemo on Monday.

  • Bec-Ky
    Bec-Ky Member Posts: 195

    May07- no I do not plan to cold cap. I did look into it though....

    My first impression was... Oh that's way more work than I want.... Lol.

    I found some super cute wigs that I tried on at a local wig place today... They specialize in women with breast cancer... And wow... If I didn't have cancer if almost consider cutting my hair off... The wigs were so awesome! ❤️


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