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Starting Chemo in November 2017

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Comments

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    rljes...I do hope your worries are all for nothing. I used to be exactly like you...pounding heart etc. Maybe, your doc can prescribe some meds to curb the anxiety. There's no reason you should live in fear like this. I live alone too, so I can understand. I've learned that worrying isn't going to change a thing...I know, easier said than done. Some days, when I feel really good, I tell myself I really don't have cancer! I just go on with my daily business as if nothing. Try to think positively...I promise it will help you a lot!

    Hope

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Rljess - I’m right there with you in fear - you’re not alone in being scared! I start two days after you. I’m also trying to do last minute preparations. I live alone too, but I have friends that are offering their help including rides to hospital- if needed. However, I have a fear of being stuck upstairs, so sick I can’t get downstairs. I have a fear of being short of breath (mind you I have heart disease), and it’s just ridiculous how my mind is thinking about it every hour. I have not relaxed over any of this since I was diagnosed - period. I had all these great plans for Fall, and none of them have been done. I sometimes feel my family doesn’t care enough to be with me, but they live in other states. I can’t afford taxies, not sure about Ubber existing here, and besides, I don’t want to be sick in a stranger’s car. It goes on and on. I fear my doctors aren’t paying enough attention, or care how I might react. I feel like a guinea pig most of the time when I go to Drs. appointments anymore. No port and I bruise terribly. Have they even noticed?

    I’ve read a lot of posts here, and I have come to the conclusion that most do feel like they have the flu for 3-4 days, a lot of just pooped out, no energy to function for most part, loss of taste, and diarrhea is high on the list of ailments. Imodium seems popular for that headache. Nobody likes the feeling of flu, but we can live through it. Some who have to take neulasta because of low white cells, get bone pain, so Claritin has been popular to take care of that. Overall, I have read only one person throwing up, just once (may not of taken her nausea pills fast enough, or ate too much), and everyone has lived through their chemo that has had it. Regardless of chemo cocktails, the side affects are the same. Quite a few have said it’s not as bad as they expected, but everyone has reacted to it in different ways. I keep telling myself I can live with fatigue- plan to sleep and watch movies. Nausea should be controlled by the meds, and those bad days will seem like an eternity, but I think I can do this. However, if it’s were to be terrible- I can say forget it, I’ll take the risk. (But do we really want to?). Keep telling yourself it’s mind over body. I wish we were neighbors- I could say, come on over and we will suffer together! We will have to do it by cyberspace - but I’m with you on this horrible anxiety

  • lizabethm
    lizabethm Member Posts: 105
    edited November 2017

    For those of you still waiting to start chemo, here is my experience so far:

    ~Nuelasta on port, I'm glad I got it-it has bounced my WBC up off the charts. The bone pain on days 6-8 HURT! However, this is what helped: claritin, walking (I know, you don't feel like it but it helps), and hot baths!

    ~DRINK TONS OF WATER. It not only helps with flushing your system, but GI issues, leg aches, etc etc etc

    ~Take your nausea meds-I never threw up.

    ~Chew on ice during chemo infusion. I didn't the first time but I'm planning to the next because I think it will help with future, mouth sores. My tongue and roof of mouth feel like I burned them on hot soup or something.

    ~Walk, walk, walk...especially when you don't feel like it, even if it is just to the mailbox.

    ~This is silly, but I'm taking coloring books next time to chemo! Keep the boredom away! LOL! ;-) I am also cold-capping so I have to be in the ole chemo chair longer-I wear the cold cap an hour before, during, and two hours post chemo.

    ~LET PEOPLE HELP YOU. I have kids and I have some amazing friends who watch them while the hubby takes me to the hospital.

    People really want to help us, even if it is something mundane. If you don't have help, I'd contact a local church. Our church is where most of my support comes from.

    ~Back to chemo, when I was being infused, the Benadryl gave me the WORST" jimmy legs"-they can add a sedative to calm that down.

    ~Thanks to many of the lovely ladies here, I bought B6 and Biotin in an effort to strengthen hair and nails.

    ~Also got L-Glutamine to take for neuropathy.

    ~Know that you might feel like the "worst case of the flu ever"...but, this, too shall pass. I needed my husband to keep telling me that. :-)


  • rljes
    rljes Member Posts: 499
    edited November 2017

    Thanks Hope & Blair - I freaked out for a minute.  Watching TV and Oprah was on talking about her new Food Line  (sounds yummy, bet its expensive)  she mentioned how she deals with stress and it was a nice & simple. She said that stress is - 
      'Stress is when you want this moment to be something that it's not'  and to STOP & accept THIS moment for what it is.'    I guess the old saying "It is what it is" comes to mind. 

    Hi Lizabeth - good advice, thanks!

    Unfortunately, in my case, people offer to help, but when it comes right down to it, they are too busy. I was actually told by a relative 'the only time you call is when you need something' so I guess its my fault.  I got myself into this mess,  I'll dig myself out. 

    Thanks for the encouragement everyone - 

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Thanks LisabethM for the advice and tips on controlling the side effects. I’m definitely going to chew on ice and try to walk - unless I’m too dizzy or queasy. One question- do they administer the Benadryl at each treatment, or are you taking it prior on your own? Is it to relax you? It seems all these drugs they give you, and recommendations for OTC drugs for side effects is overkill for the body. How do you take so many in the 16 hrs. you’re awake? None interfere with each other? I’ll never be able to remember to ask a doctor so many questions that are on my mind. I have statins and blood thinners on top of all these drugs. And a thyroid pill

    Rljess - if your doctor hasn’t done so, ask for an anti-anxiety drug like lorazepam. It’s also an anti-nausea drug. I told my OM at my first visit that my stress level was a 10, and so she prescribed that along with the base anti nausea pills prochlorper. I tried taking one lorazepam the other day and one at night. It seemed to calm me down some. I felt a little sleepy after I took it during the day, but I was testing it out. (Okayed by nurse to do this). It didn’t cost much. Anyway - call your Dr. and ask if you could take it prior to your treatment, or at least have it if your anxiety is too much later.


  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    hope, it shouldn't but i'd still check with your doctor if it's okay. probiotics won't be any different from consuming yoghurt or keffir but it would be safer to get a go signal from your doctor. :

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Good morning...

    Lizabeth...I was on the same cocktail as you when I was initially diagnosed...I never had as many side effects as some....only loss of hair, bone pain on occasion, aches and pains on occasion, fatigue -- no vomiting, no mouth sores, no neuropathy. So I guess I was lucky. Everyone reacts differently, for sure! I like your idea of the coloring books! Now that I'm on Taxol, I take my Kindle or a book. I'm an avid reader and this really passes the time. My taxol infusions are only 1-1/2 hours or less -- nothing like with my initial cocktail of Cytoxan/Taxotere. Sometimes, I sit longer in the "waiting room" before seeing my onco than I do in the chemo room. I guess "waiting" room is appropriately named!

    rljes...When I'm talking with people and they look at me with those sad eyes...I always look back and say "It is what it is"...one of my most used sayings.
    I'm so sorry about your "help" situation. I am one with many offers of help from friends and family. I try to be as independent as possible -- and they all know this. So, they know when I ask for help, they are always there for me. I hope your situation changes in this regard. There's nothing worse that being/feeling alone in our situation.

    Blair...They put Benedryl in my pre-med infusion. It just relaxes me for a few minutes. Some people fall asleep, others get "antsy"....none of the pre-meds (including the steroid) ever bothered me. I don't take anything prior to my infusions, other than Ativan (lorazepam)...but, I do this before every doctor appointment to curb the anxiety. My only other medication is Crestor. I was on BP meds, but was taken off of those when my creatinine level elevated. Like you, I often think - how can a person ingest all these drugs without them interfering with each other? Then, I think of a dear friend who takes 16 pills a day! So, I guess it's nothing to worry about. I know my pharmacist always checks, if I'm ever given a new prescription, to make sure it's okay.

    mkn...Thanks. I did ask the NP about pro-biotics and she recommended kefir yogurt. Regular yogurt doesn't bother me. I will give this a try when I know I'm going to be home all day....just in case..LOL

    Have a wonderful day!!

    Hope

  • Erikag726
    Erikag726 Member Posts: 10
    edited November 2017

    I think today is the day to shave my head...My head hurts, my hair is falling out all over and making a mess. My 4 year old keeps asking why my hair is everywhere, even though I have a read her some children's books about having a mom with breast cancer. She asks "why" at least 1,000 times a day, so I am used to her constant questions.

    I told the nurse immediately that my wrist hurt during my first cycle, he gave me a warm compress, and said that happens some times. Still numb, but I was told it will take a long time to heal.

    I am scared about getting the port tomorrow and the pain and discomfort I have read about.

    Started taking the steroids today for cycle 2 tomorrow. I also have been using a steroid cream on my hand. So agitated with aniety. Driving my husband crazy with nagging. I need to go for a walk, but have not had 30 minutes to myself to do so.

    Off to church this morning, and probably will do something with my hair this afternoon. My scalp really hurts. Will it stop hurting once I buzz my hair?

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Erika...Mmmm...I never had scalp pain when I was losing my hair, but I had a lot of itching. It sounds like it's time for that buzz cut.
    Please don't be afraid of getting the port! You are in a twilight sleep and it will be over with before you know it. Not everyone has "pain"...it is more a discomfort for a few days. I honestly don't even know mine is there. Mine is about the size of a dime. You will be so thankful having the port!! Will they access the port for tomorrow's infusion?

    Hope

  • magari
    magari Member Posts: 335
    edited November 2017

    So I am supposed to have my first TCHP infusion tomorrow, and I've had a cold for the past couple of days. It's pretty mild; nothing that would cause me any concern normally. But I am worried that they will want to delay my treatment because of it.

    Not that I am looking forward to any of this, but if I have to do it I would like to stick to the schedule and get this show on the road....

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Good luck Margari! Will have my fingers crossed that all goes well with your treatment, and few side effects. Keep us posted. Hope the cold cap works for you too. Hope the mild cold isn’t a problem, but they might want to push your date up until you are over it - bummer if so.

    I had to make a list of all you gals here to keep my mind straight on who is who, and what each have told me. We are a large group. I blog on the August group, and lumpectomy group, but they are slowing down some.

    Aymerz33 - good luck tomorrow also, and keep us posted on everything as this is your blog



  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    Not looking forward to the next week of feeling like crap again - but glad that I will be halfway done. I think one of the hardest things about this, is I've felt completely normal (life was getting back in the swing of things) for the past week and a half. Now I have to go back in tomorrow and get hit by a truck again.

    Yesterday was my birthday, and I had such a nice day with my friends and family. I didn't want it to end. Reality hits again after the fun is over and it leaves me feeling sad. We are working on getting our holiday decorations up and our tree today, so that has kept my spirits high :) My husband was really supportive of us getting our decor put up early this year, so I have the beauty of it to enjoy while I'm not feeling very well.

    My hair has started falling out a little bit, but I am going to keep trying with the cold caps. It isn't coming out in *huge* chunks, but it's definitely coming out. My hair in other places has been definitely falling out, so we will see how things go!

    Hope everyone has a lovely weekend, without too much stress, pain or icky feelings. Lots of love!

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Well, I'm done - Finished with my shopping. I have Everything from Tree Oil, Epson salt, Vinagar, Preggie Pops, A Silk Pillow Case, Baking soda, to my Saran Wrap for the port, B6... I can't even list all the crap I have - If it was mentioned - I got it.   Hopefully I won't need most of the stuff, and can donate unopened things after its all over. 

    I take Ativan.  It helps. Doesn't make me sleepy at all.  I've been on steroids for years, increasing/decreasing as needed - so hopefully the dose they give me in chemo won't give me the creepy crawleys. (Usually it gives me a boost in energy) 

    Aymerz - happy birthday to you! 

    I did not buy an electric razor - so what am I to do when the time comes? 

    Magari - Best wishes for your treatment tomorrow.  I'll be right behind you on Tuesday. I will have to ask my MO why I'm not on Perjeta along with my Herceptin.  I had surgery first too - so that's not it.  We both had a node involvement - so that's not it.  ? 

    Blair - I'll have to brush up on my Excel skills and make a chart of everyone as well! 

    Erikag - I was the worst fearing the port.  I feared it more than chemo.  It hurt, and twilight didn't come to me - I was awake and talking - but it wasn't as bad as I imagined.  Its day #13 since my port was in - I know its there, and it only hurts now when I touch it or brush up against it.  I am so thankful I have it - When I was having IVIG infusions every week a few years ago - No Port and they had a terrible time finding a vein each time - and painful. Mine is about the size of a quarter. 

    What does everyone put on their buzzed /bald head to keep it from itching and soft (as a baby's bottom)? 

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    I have a question for you ladies (and any gents out there lurking)

    My MO said absolutely NO alcohol during chemo. Have your MO's said the same? Do we know why or have any thoughts? I would have loved a glass of wine yesterday for my birthday :( but I forwent because of his recommendation.

  • magari
    magari Member Posts: 335
    edited November 2017

    Aymerz - I don't know what chemo you're doing. But I'm doing TCHP and although my oncologist recommends limiting alcohol, she said that an occasional glass of wine with a meal is allowable if you enjoy it. The handouts I was provided for each drug from Chemocare.com each state, "In general, drinking alcoholic beverages should be kept to a minimum or avoided completely. You should discuss this with your doctor."

    I think the reason to limit/avoid drinking is both because of potential liver damage and because it is dehydrating. My own plan is to have a glass of wine every now and then if I want it and push extra fluids.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    Amymer, yes my MO said no alcohol, i think some people had a glass of wine or beer, they said it didn’t taste good. Does you taste buds changed?

    Rljes- you are ready for his battle, send you good vibes and praying for you to have an uneventful infusion with minimal SE.


  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Alcohol probably interferes with chemo drugs. I gave up my glass of wine each night for Pom juice. Miss the relaxing buzz, but I was really drinking it for heart health until I read wine (or any alcohol) is no good for breast cancer, but a glass now and then shouldn't hurt. I agree with the rest - check with doctor. Might depend on type of chemo drugs.

    I heard lidocaine cream numbs head or scalp pain, and peppermint oil helps with itching, but then it probably wouldn't keep the wigs very clean if it were used all the time.

    Paulette - found you at the senior group site. Have you started radiation yet?

  • 19501952
    19501952 Member Posts: 80
    edited November 2017

    Tomorrow is chemo class. I’m still searching for someone who has had or will have CMF. Im a little concerned that I seem to be by myself with this chemo. I’m hoping I get a clear idea of what I might expect in terms of side effects. The lists of supplies I might need have been both helpful and scary. My boss will be setting me up with remote access so if need be I can work from home. Wishing everyone the very best and a very good week ahead.

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    195052 - Your doctor must feel this chemo combo is your best treatment, but I see why it's hard for you to find others who have had it. I read it's a common combo that has been around. Many here are getting the Cytoxan part, but I haven't seen this one before. I was curious and found this link that might be of interest for you that tells all about it

    http://www.lbbc.org/learn/treatments-and-research/chemotherapy/common-chemotherapy-regimens/cmf-cyclophosphamide


  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Magari...Here's hoping your infusion is a "go" today! Most especially, that all goes well and you will have few side effects.

    Aymerz....I remember those "yucky" days oh so well. Just remember, after those few bad days you will have the good days to look forward to. Great idea to have your Christmas decorations up for you to enjoy!
    Happy belated Birthday!! So happy you were feeling good to enjoy!! As for the wine, I asked my onco the same thing. He said I could have a glass of wine now and then...just don't overdo. In fact, he said if I lost my appetite, a glass of wine would help stimulate my appetite. I was out yesterday and had two glasses of wine.

    rljes...Sounds like you've got it covered with all your supplies!! Good for you.
    I had my grandson buzz my head the first time around. Will probably do the same this time. I wore scarfs and knitted hats around the house, but always wore a wig when I went out and about. They have some really cute, inexpensive caps you can wear at bed time to keep your head warm.

    1950-1952....That's great that you will be able to work from home, if needed.

    Blair...I used Nioxin shampoo for my bald little head. It was recommended by my oncologist. I naver had any itching or scalp pain.

    Hope this is a great week for everyone...especially, those having treatment. I will have my 2nd infusion of Taxol on Thursday. It was nice having an "off" day for Thanksgiving.

    Hope

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    Round 2 of AC tomorrow and dreading it. Round one was pure hell. On top of how sick it made me I am forced to go alone because no one can watch the little ones(hubby's family is useless and mines 2 hours away). When they were giving me the Adriamycin it made me feel like hell. My tongue felt hot and swollen and my throat felt like was closing off. The only comfort I had easy holding my husband's hand. I have severe anxiety so not sure how I am going to do it alone :/

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Crystal...Be sure to tell your nurse about your anxiety....they will give you something for it.

    Hope

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    Nonahope. My doctor and nurse are aware of my anxiety. Last dose they gave me absolutely nothing for it :/. Thankfully I was able to get a sitter so at least the hubby will be with me.

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Crystal...I'm so happy that your DH can be with you. I will be going for my 2nd Taxol infusion on Thursday. I will be by myself...but. I prefer that. They wanted someone with me for the 1st infusion, just in case I might have a reaction. I didn't....so, I'm looking forward to my alone time with my book.

    Hope

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Shaneswife - I wondered about you for last two weeks! You poor thing! So sorry you suffered. Hopefully they will change to a milder dose or different drug. So glad you have your hubby with you at least, and the little ones are covered.

    Nonahope- is taxotere given by itself for first two rounds, then Cytoxan last two rounds? Do they give you different side effects

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    I am glad you did not have a reaction to the taxol. I am scheduled for 4DD taxol after the 4AC but they are discussing not doing the Taxol as I am BRCA1 positive which causes the Taxol to be less effective. I am currently cancer free this is just adjuvant insurance. I had to shave my head tonight which was the next milestone in the cancer journey. I was losing major clumps of hair and my scalp is super sore.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Everyone!  This Is It - Tomorrow is the Big Day - #1 Chemo - Arrrrrrrrrrrrrrrrrrggggggg!

    I took my pre-med :Dexamethasone 8mg & WOW !  I had so much energy today it was GREAT!  I went shopping Again, Saw my Mom, put up her Christmas stuff, Came home and Cleaned out the front ditch, clipped the evergreens, Took Truman for a 45 minute walk, Cleaned my House, Packed my Chemo Bag.  I want to ask my MO if I can take this much all the time! (I already take .5 prednisone for a maintenance dose) 

    Aymerz - I was told the same Re: alcohol that Magari said.  

    1950-1952 - I used to take Methatrexate by itself for Dermatomycitis.  I couldn't drink while taking that stuff.  (Pill form) the only SE's I had was leg cramping and Heebie Jeebies. 

    Magari - How did your #1 Day one go?  I'm so interested in comparing notes since we are on the same treatment. Hope it went Very well with No events! 

    Shaneswife - #2 hope its better. What did your MO say about your throat closing - that sounds serious. I'll be thinking of you tomorrow - I'll be alone too.   Did they give you Ativan to take home with you?  Really helps me when I start freaking out. 

    Take care everyone! 

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Good luck Rljes - hope everything works out with few side effects!

    One thing that made me think to be brave was watching a St. Judes commercial on tv and thinking of those tiny kids going through chemo treatments - if they can do it - so can we.

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    Rljes...I was thankfully able to find a sitter so hubby will now be with me. They said the throat closing wasn't a reaction and was likely a result of the anxiety from the way the injection made me feel. I have 1mg Ativan at home to take when needed it helps sometimes but the anxiety with the chemo is so bad it doesn't touch it. They are going to talk about lowering the dose because it hit me hard and also causes a stye as well as swollen throat glands. The Claritin seems to help a bit with the neulasta but I definitely still had some pain. Good luck with round number one. It sucks but it's doable :) Feel free to add me on Facebook at Crystal Lutz Robertson(it's a pic of my hubby and 6 little ones).


  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Blair...When I was first diagnosed with BC in 2010, I had a lumpectomy....then had chemo cocktail of Taxotere and Cytoxan - I had 6 rounds total. Both given together...every 3 weeks. So, I had two weeks off between infusions. From there I went to 30+ days of daily (except weekends) radiation. Now, since my BC metastasized to my bones and bone marrow, I am only on Taxol. I was on oral therapy (Ibrance/Letrozole) for almost five months, but after finding out there were BC cells in my bone marrow, my onco switched me to the Taxol infusions. I've only had 1 round of Taxol, so far. I had miminal side effects. A bit of fatigue and a couple days of mild achiness that went away with Tylenol.

    Crystal...I hope the shaving of your head wasn't too traumatic. I just kept telling myself "it will grow back"...and it did. Now, I'm back on that journey and will be a "baldy" before long. Yes...it is just part of the journey. I sure hope they lower your dose next time.

    rljes...Is there a reason you take steroids prior to your infusion? Do they not put them in your pre-meds infusion? You are ready to get this show on the road, for sure! I always try to accomplish a lot before my infusions...just in case I might be sidelined with side effects. Will be thinking of you today...keep us posted.

    Have a good day everyone...I will be thinking of each and every one of you and hoping treatment is kind to you!

    One thing I've been trying to do is to get out and do something every other day...out one day and home the following day. Even just going to the grocery is going out. I find this forces me to stay a bit active and still feel like a part of society. It helps keeps my mind off what I'm going through and keeps those "pity" parties at bay.
    Sunday I went to a casino with my daughter and sister. Yesterday was a day at home. Today will be my grocery day. Sometimes, I don't feel like going out, but I push myself. Even if it's just a short walk for 10 minutes. I'm hoping I can continue this routine in the future.

    Hope

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