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Starting Chemo in November 2017

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  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    Rjless...I ate a light meal before I left and hydrated really well. During I snacked lightly. I had horrible morning sickness so am not surprised how it hit me to be honest. For round 2 I am going to try to have a bigger meal before hand and snack more often during the infusion.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Shaneswife - what did you snack on during chemo?  

  • Meowmmy65
    Meowmmy65 Member Posts: 125
    edited November 2017

    rljess - I will have my port 2 weeks as of tomorrow. The bruises are mostly gone, but still a little swollen. I'm very aware of it, and find myself putting my hand over it while walking around, as if to support or protect it. Otherwise, when I move quickly, I can feel it pressing against the bone. Very annoying.

    I don't have a firm date to start chemo yet, but I suspect it will be the week after Thanksgiving, right with you. That's fine with me. My immediate family is all vegetarian, but we love our T-day menu. It would be a shame if chemo interrupted it this year. By Christmas, my younger daughter will be on break from her graduate program and will be able to help. The older "kid" (26 yrs old) hates to cook, so I don't ask her!

    I'm not excited about it, but I'm definitely ready to move forward.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Meowmm - have you started your Tamoxifen pills?  My Mo has not mentioned them.  I'm sure that's in the mix for me/ If you started the pills - when did you?  If you've started them, any SE's?  I was hoping not to start any Anti-Estrogen blockers until I have Herceptin under my belt.  Some say they couldn't tell which SE's went with what drug - I certainly don't want that to happen. Hope your doing Ok.  I'm stressed - driving my 'navigator' crazy with questions. 

    Take care everyone!

  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    My MO gave me anti-hyperacidity meds but he was happy to know i rarely took them and instead focused on food that was gentle on my tummy.

    on day of infusion i try not to eat anything too acidic. during infusion, some of the meds usually knock me out so i don't eat during. and on the days after when i feel nauseous, i keep things light on the tummy. nothing too acidic or greasy but load up on flavor and veggies.so usually chicken noodle soup or barley with chicken and ginger lots of water with fresh slices of fruit in case it tastes metallic. no tomatoes, coffee (i haven't had coffee in a long time actually -- i miss the instant ones), anything that a person with Gerd/heartburn would avoid, iavoid them the first few days. once i start recovering i eat as i normally would. :)

    good that you're not running a temperature rljess. :) then maybe just keep monitoring and ice the port a bit.

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Shaneswife - bummer about your nausea. Wouldn’t eating too big of a meal cause you more nausea? Do soda crackers help like they did with pregnancy morning sickness? (Back a hundred years ago when I was pregnant, that was all I could keep down in the mornings). Like - 3 crackers, but it made the nausea go away at least.

    Maybe you will feel great by day 4 since it seems to be hitting you sooner. Hang in there darling!

    Meowmmy65 - I should be starting just before Thanksgiving, but my cocktail is different using Cytoxan instead of carboplatin. I see that you are similar to Rljess- carboplatin is for her+? Taxotere seems to be the base ingredient for most of us


  • SDK8
    SDK8 Member Posts: 18
    edited November 2017

    They have changed my date to start Chemo. I now start November 29. I have my port installed this friday. They gave me a numbing cream - see how that works :s I am not looking forward to having it installed. I have started anti-nausea medication for my stomach now, and have some heart burn medication too. They told me anything goes for food before, during and after. Its whatever my body can handle and they said everyone is different. Tomato SOup or veggie broth has always been my go to when feeling nausea, so I guess we will see. AC (8 cycles every 2 weeks) and Tax 12 (cycles every week) i will finish the end of March 2018.

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    SDK8....I used the numbing cream when I had my first port. I really don't know if it helped or not. I haven't used it this time around. Accessing the port is quick and the pain is tolerable. I hope you don't have any problems. I never had any real issues with either of my port insertions. The finish line seems like a long way off, but it will be here before you know it.

    Hope

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    Shaneswife, i had horrible nausea my first dose. I found eating little and often, carbs especially any fluids i could including glucose drinks or gatorade took the edge off. It passes after a few days but is horrible. My second dose I had a really good lunch about 2 hours before infusion

    Do you take an anti nausea med before infusion starts? I take emend. It says take it 30 mins before infusion but I found faking it an hour or even 90 mins before worked better.

    If you have your period the nausea can be worse. I asked my MO for more anti nausea meds to have on hand after my first dose. I didn't actually need them, eating more, being more hydrated and taking the emend earlier were enough. Oddly, I think I kind of got used to it as well, I knew what was coming so could deal with it.

    Hope your OK. How are the kids doing?

    Same to everyone else starting this week. Hope your all OK. I only just managed to read a few updates there but I know there were a few people starting this week.

  • Tallantire
    Tallantire Member Posts: 2
    edited November 2017

    Hi everyone

    Just to report as requested I had my first cycle of EC yesterday and it went fine apart from a few hiccups which were not a major problem.

    I am glad its over as I will know what to expect second cycle and how things never happen on.time and there is so much waiting around. I was on the unit 7 hours in total as opposed to the 4 it was supposed to be!

    All the nursing team were brilliant and made me feel so at ease. The chemo unit is a small local suite which is 10 minutes from home as opposed to.45 minutes to the major cancer hospital it is linked to so much more convenient.

    They struggled to cannulate me which has been a previous problem having such deep veins. I wasnt given the option in the time before chemo to have a port and when I mentioned I would prefer it and it would be easier for them I was told they didnt do it there and it was too late to arrange it now at the one further away for my first dose which I found a bit annoying as it would have been helpful to have known that previously. Including my notes containing info about how an anaesthatist had to.cannulate under ultrasound only 2 months before due to difficulties for an unrelated issue following my lumpectomy. An appointment though has now been made for me to have the Hickman line in 10 days time at the larger hospital. I was told this was preferable to the port.

    The other slight hiccup is that I ended up seeing the oncologist and given an apology due to.being given the wrong dose! Fortunately it was under dosed not over and I was told it shouldnt be a problem but there had been an error recording my height and weight and tailoring the dose to suit. I am already on a slightly reduced dose due to having CFS so I am just looking at it as a bonus to breaking me in more gently perhaps!

    In all though it was a very positive experience which has cummulated after weeks of awful anxiety and worry over making the decision to have it.

    I did opt for the cold cap in the end. I wasnt going to bother initially as had heard all the horror stories about how awful and painful.it was but I changed my mind on the last minute as I always like to give things a try and experience something myself plus its my daughters graduation in 3 weeks time and it would be nice to look half decent for that. Surprisingly I didnt find it half as bad as expected. I took pain relief an hour before hand and distracted myself chatting to my partner and son. In fact I was really proud of myself for keeping it on the whole time of 4 hours when the nurses confessed to only being able to tolerate 20 mins!

    No major SE as yet just a slight headache last night before bed and perhaps again this am which I have taken paracetamol for.

    I did the salt water and baking powder mouth wash before bed and intend to aim to do it at least 4 times a day to avoid ulcers. My son.is an ITU nurse and insisted on it as a regime from day one.

    Well sorry for rambling just thought I would fill you in on how my day went. Like I say a very pleasant and surprising experience so far under the circumstances!

    Take care everybody Xxx





  • Meowmmy65
    Meowmmy65 Member Posts: 125
    edited November 2017

    Rljesd - nope, I haven't started any meds yet. My oncologist says the order of treatments will be: lumpectomy, chemo, radiation, herceptin ongoing for one year, tomaxifen for 5 years. I believe there may be some overlap with the radiation, herceptin, & tomaxifen.

    Believe it or not, I am not stressed about this at all. I trust my doctors, and my prognosis is excellent. more than once, both my surgeon and oncologist have said this can be cured. I feel very lucky. This is no picnic. But I can do anything short-term. And a year or so is no big thing. My father died at 51, after having a third of his body amputated due to bone cancer. I was just a teenager then. At 52, I have already outlived him. And this will NOT screw with my life or my peace of mind.

    Blair2 - yes. The difference must be her2. My meds are based on being triple positive. I had a delay in getting my lumpectomy because I had cellulitis in my finger on the same side as my breast cancer. We had to wait until the infection was resolved. Surgery was supposed to be 9/22. I finally had it 11/2. The tumor increased from 7mm to 1.6 cm in that short time. Still small, and an early catch, but the growth was from the her2, which is more aggressive. ER/PR positive makes it less aggressive. That change just reinforces to me how lucky I am that we caught this so early. Mammograms really do save lives!

    Peace everyone. Breathe. We've got this! We are going to kick some cancer ass.

    Happy

  • magari
    magari Member Posts: 335
    edited November 2017

    Hi, all -

    I will be starting chemo on 11/27 - 6 rounds of TCHP on an every 3 week schedule. I'll be using Arctic cold caps in an attempt to save at least some of my hair. But am also going for a wig consult tomorrow in order to have a backup plan.

    Had my port placement surgery two days ago and although I was quite uncomfortable yesterday I am feeling a little less so today. I'm still also having some discomfort from my mastectomy/reconstruction, so taking pain meds as needed. I have my first PT session Monday morning (as recommended by my breast surgeon) and hope to be feeling less stiff and sore by then.

    Chemo "teaching session" Monday afternoon, with flu shot just prior. All these appointments are just about a full time job! Fortunately, my office has been very supportive and I am currently on leave through the end of the year, which will get me through my 2nd chemo session.

    I plan to bring salty pretzels, animal crackers and ginger ale to chemo for snacks/nausea. Any suggestions for what to bring for actual lunch?

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Magari - Looks like we have same treatment plan (except for the perjeta)  I had my Port in on Tuesday - I dreaded that like crazy - painful and it looks like someone hit me with a baseball bat, but today it feels much better.  I still hurt from my mastectomy, and I've been going to PT for months.  After about 2 1/2 months I finally got rid of my ' 2x4's' in my chest.  (I'm going flat - so maybe there is a difference in feeling) Plus I'm thin (on top only!) and skin is thin.

    Nonahope - you said when they accessed your port the 'pain was tolerable' that's not good.  I was hoping for pain free.  Did you use the EMLA cream before hand?  I won't be cold capping either - just hats and scarfs. No wigs.  I can't even ice my fingers - have Raynaulds. 

    Stage2ire - you said you took Emend 90 min prior to chemo - Do they infuse Anti - Nausea in your IV during Chemo?  My MO said they would - Zofran. 

     ***** warning warning - Hot Flash **** geez.  I'm on fire.  Have to grab an ice pack.  At least my Phantom nipple pain has eased up.  Its the little things. :) 

    SDK8 - hope your port placement goes well.  

    mkn86 and Blair2 - thanks for the eating tips - crackers and trail mix sounds good - maybe some dried fruit.  I was told it would last about 6 hours.  Got my Playlist and "Girl on the Train" book.  Much shopping to do yet.  I don't want to have to get out the first 3 weeks.  The Count Down has Begun!   


  • rljes
    rljes Member Posts: 499
    edited November 2017

    Blair2 - Oh My Goodness -  I was reading your post 'Aug surgery' (?) and you mentioned your BS
    "she made me worry because she didn't explain anything"  That is my MO.  For 4 visits he kept telling me not to worry that I would have NO SE's - How can you know this I asked and he answered "Because I'm that good"  I told him we were not communicating and he dismissed me.  (after talking to the pharmacist - he explained I would be given 'pre-meds' in my IV during Chemo to prevent SE's - well, if MO would have said that in the beginning I wouldn't of been so stressed!)   I too am terrified of the thought of nausea, fatigue (and Diarrhea) - I already have bone pain from my auto-immune disease.  The Unknown is making me c-r-a-z-y.   


  • Meowmmy65
    Meowmmy65 Member Posts: 125
    edited November 2017

    Rljess - maybe you need a new oncologist? I would not be happy with someone who have nonanswers like that

  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    Today was a bit much emotionally. The nurse had warned me that the steroids might make me more emotional than normal. Or I could just be tired. Who knows. Whatever the cause the tears seemed to come a lot easier than normal today. I went to work and everyone was very supportive but they all wanted to know how 'it' went. When I picked up my daughter from school her first words were do you still have hair. But I did get hugs from a couple of her fellow girl scouts and that started the water works again.

    rljess - I would be a bit put off if my oncologist didn't answer my questions. Do you have any opportunity to find a different one?

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    rjless, I get fluids with AC, emend before hand. Steroids and anti nausea drugs given in tablet form just before infusion starts. I took my anti nauseas again that evening before bed whether I felt I'll or not. I don't get up during the night to take meds, but take one last thing at night and minute I wake up I take emend and lots of water. It helped, I had nausea but it was manageable.

    I get all my chemo via IV, no port or picc line. Its getting harder find a vein now, especially with just one usable arm. But my nurse is confident she can get 3 more lines. If I were on weekly taxol she did say I'd be getting a line though


  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    I went to chemo class yesterday as well as seeing my ps. The pointy boob is still swollen some. He kept saying that I was pretty torn up on that side. By the time I go through radiation, no telling what it will look like. He also said I needed to use a lot of lotion on everything, so another step of self care.

    The class went over things we needed to be aware of, body temperature and the usual side effects. Don’t look forward to any of it. I was tired when I got home. Got a little Christmas shopping done in between appointments which was good.

    I’m wondering how Aymerz33 is doing. She started this post back in late October. Haven’t seen any posts recently. It seems when people start their treatments, there’s so much upkeep involved.

    Yes, my bs did not explain things and was the most insulting doctor I have ever known. It amazes me how she has that position, but at least I’m through with her hopefully forever. It’s perplexing as others like her according to her reviews. I did find one complaint- so maybe she just picks a victim to be obnoxious to once in a while. She never took me seriously.

    Now this morning I see the oncologist again and prepare for next Tuesday ‘s chemo. Still not sure about a port. I could get stuck with one today, but seems thats done a week before.

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Good morning...

    All went well with my first Taxol infusion yesterday. My oncologist was running behind (as usual)...my appointment was at 12:30 and it was 2:00 pm before I got into the chemo chair. With pre-meds and Taxol, the infusion was 1-1/2 hours. I got a bit "relaxed" from the Benedryl for a few minutes, then I was fine by the time all was over. Oh, I did get my X-Geva injection. I had my choice of arm or belly...I chose my arm. She injected very slowly and there was nothing more than a bit of stinging...nothing earth-shattering. I have no soreness in my arm today.
    My sister was with me and we went to Applebee's afterward. I felt fine. I did fall asleep on the sofa watching TV about 8:00 pm for about an hour. Then, woke up and didn't go to bed until 12:30 am. I was up at my usual 6:30 this morning. So far I feel fine. I will be guzzling water all day.

    I need to make a grocery run. And, pick up some Claritin...just in case the pains begin. I did take a Tylenol yesterday after dinner. So far, so good....praying things will continue in that direction.

    RLjess....All you will feel is a bit of "stinging" when they access your port...unless, your port is tilted in some way -- this can happen and it might take a couple tries, but it's no biggie. "The Girl on the Train" will keep you focused away from that chemo drip!!
    I haven't used the cream this time around. I did with my first bout of chemo. It only works for about 45 minutes, so often times the effect wore off before I got my chemo...even though I never put it on until I was walking out the door. I see no difference now that I'm not using it.

    Magari....My chemo facility has a refrigerator and cupboard full of drinks/snacks with good choices. If you take your own, I would suggest trail mix, peanut butter crackers or whatever you like. The patients who are there for a long length of time, will have their spouse or whoever accompanies them, go out and bring in lunch. Yesterday, someone came in with a bag from Wendys...oh, did it smell good!

    Wishing all of you who are about to start....the very best of luck and many prayers and hugs.

    Hope


  • Maggieanne84
    Maggieanne84 Member Posts: 6
    edited November 2017

    Had my first infusion 11/14 DD of AC and yesterday was my worst day so far. Tired but I can't stop eating. And am constantly thirsty. I am trying to work with all this going on to keep my body in motion. I hope everyone is doing well!

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    Hey there Blair2!

    You are so sweet to wonder about me :) I have been watching the boards closely and all of these posts.

    Ive honestly been doing really well. My SE's were fatigue, dry mouth and bone pain - but all of those only lasted about 4 days and then I was up and about again. I'm going back to work for a couple days next week before the holidays and my next infusion.

    I'm counting myself as lucky, since my overall experience has been so simple. No port, so none of those issues and my chemo treatments are light and only 3 more to go.

    Hugs to you all!

    Amy


  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Oh this is wonderful news with you Aymere33, Maggieanne (although sorry you had a rough day), and Nonahope feeling good after her first round!

    My morning appointment was canceled this morning due to my oncologist having an emergency. Her nurse asked if I could push the date up from the 21st to the 30th. (Fine with me as I needed more time to buy a ton of things in preparation). Loading my frig with pop cycles and all kinds of silly things. The only downfall is I talk with the doctor the same day of chemo. I have a ton of questions. So I will be the last one treated this month, but will join or continue with you all wonderful ladies, and the December group as we all look forward to our different treatments and outcomes.

    I will not be getting a port as it is not necessary using my drugs (so the nurse told me) - taxotere and Cytoxan. Not sure if that’s good or not. It will eliminate an extra stick, but I may end up with a very sore bruised up arm. It’s already bruised from being on blood thinners. I picked up my anti nausea pills, prochlorper, and anti anxiety pills called lorazepam. I’m going to take one of the lorazepams tomorrow and see if it calms me down. The nurse said I could do this. Won’t waste the anti-nausea pills though of course until chemo time. I just want to see if it makes me feel different.

    I’m hoping young shaneswife is feeling better by now. Stage2ire- sounds like you have your symptoms in total control. It’s great to hear how we all handle this hell eventcancer has given us, even though we are all different.

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Blair2....I'm surprised about "no port" for you. Those were the "exact drugs" I had for my initial bout of breast cancer in 2010. My onco said it was most important to have the port, as these chemo drugs can burn your skin if any of the chemo should happen to leak. There were no if's, and's, or but's about it...I was getting a port. I would demand a port if I were you.. Maybe, you are getting lower dosage, but my first infusion was 5 hours long. That included the pre-meds of Benadryl, anti-nausea meds, steroid etc.

    I'm still feeling good....but, remember my chemo is Taxol only. Went to the grocery and will put stuff away and just chill the rest of the day and evening.

    Hope

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Everyone - I can't get a new MO, unless I change facilities- and its too late for that.  I 'fired' the other in the group a few  years ago when I had IVIG infusions, and the other one had awful beside manners when treating my Dad.  I'll just continue to educate myself and speak my mind to him.  
      The Infusion nurse called me today - I was wanting to know how they monitor your WBC count after 1st chemo treatment - found out they will want me to come in between day 7-10 when they predict WBC might fall. Well, if I'm feeling like crap - how am I to drive to the appointment?  They said they won't give Neulasta until #2 - only if needed. (another thing my MO kept telling me not to worry about - aaarrrg)   I live alone - In small town USA - No Uber, No family, and have to rely on Senior Services which you have to book 2 weeks in advance.  - My car knows the way to the hospital :) Looking into "Chords of Love" on FB - which was suggested by social services. 

        Stage2ire - I didn't want a port - but I had to. With previous infusions, I have so much scar tissue its almost impossible to find a good vein anymore.  Wishing you Good Strong Veins! 

    Maggie - could it be the steroids you might be taking for the hunger and thirst increase?  hope your feeling better. 

    Blair2 - Ativan really works for me.  Calms me down without causing drowsiness or fog.  I still have a mile long to do list as well.  I need to put together a chemo bag. 

    About the port and EMLA cream - Nonahope - I understand how the cream could wear off by the time its accessed.  Couldn't I add more EMLA cream while I'm waiting in the office?  I hate pain. As time goes by - I find my tolerance is fading. I am so happy for you that your first day was uneventful! 

  • cwb1998
    cwb1998 Member Posts: 2
    edited November 2017

    Hi all! I had my second treatment on Wednesday (Adriamycin and Cytoxan) and am doing pretty well. I think it helped to have an idea of what to expect this time! BUT, I was emotional this morning when all my hair was coming out in the shower, so I went ahead and got it buzzed today. I did get a wig, but it reminds me of the brown football helmet from "Steel Magnolias" so am not sure how much I will wear it! Hope all of us can have a nice weekend with some bright spots of joy!

  • mermaidmom
    mermaidmom Member Posts: 7
    edited November 2017

    stage2ire- my littles are 7, 4.5 and almost 2. I have a lot of amazing support. My Aunt is coming in from out of town the day before I start chemo. My partner is also great and his company is pretty understanding of whats going on. Plus lots of people offering meals etc Im going to see about starting my 2 younger ones in daycare twice a week so I can just rest and I don't have to worry about asking for help.

    Found out lymph nodes are all clear! Will only need 4 rounds and no port.

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Nonahope - I think my chemo will be about 3 - 4 hours long, so maybe it’s a minimal dose. (?) Not sure. I know she said it was a mild dosage compared to others. Why this varies with same diagnosis among us, I have no idea. Maybe because I’m older, this is less aggressive treatment. My heart disease may have something to do with it. Weight and height plays into amount, but that’s all I know. I’m 5’3 - 138lbs. Another lady at the meeting yesterday was also just getting the IV. Same drugs - so I hope they know what they are doing. If it stings - I will definitely make a noise.

    Mermaidmom - see you are not getting a port with same drugs. Did your team explain why no port? You are a young mom, so age mustn’t make a difference. Just don’t know. I’m following you in side effects as I start 30th now


  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    This morning I woke up my daughter singing "I got this feeling inside my bones, it goes electric, wavey when I turn it on" and telling her it was going to be a fantabulous day because by gosh we both needed a good day. And true to 6 year old form, she just wanted to go back to sleep but no, this time I insisted she get up and sing with me. By the time I dropped her off at school, she felt good, I felt good and I knew today would be ok.

    I only had a couple of moments at work when I felt like I wanted to pass out under my desk but luckily a couple of coworkers took me out for a walk and got my blood moving. I keep pounding the water and I hope that helps keep me hydrated because that feels like it's going to become a real challenge. Between the dry winter and chemo, I feel like a raisin. Other than that things are still pretty good. Hopefully week 2 goes as smooth.

    And to top off a good day, I got my genetic testing results and they found no genetic variations! This is such good news for me and my family. I am very relieved. This may also mean that my surgical options might be different too.

    Lastly, the kid got a golden LOL doll today so it really was a fantabulous day after all!

  • mermaidmom
    mermaidmom Member Posts: 7
    edited November 2017

    Blair2- my oncologist said it was the amount. If I was having anymore than 4 rounds we would have done a Port.


  • IntegraGirl
    IntegraGirl Member Posts: 48
    edited November 2017

    Blair2, I did 8 rounds of chemo with no port and no problems. I have zero regrets. Everyone is different and there are no "musts" or "shoulds". Do what works for you. I also fasted 48 hours prior and 24 hours post chemo (Valter Longo protocols) to minimize SEs. With the exception of hair loss and fatigue by the end, my SEs were minimal