First round of AC and Neulasta question?


Hi Ladies


I had my first round of AC on the 29 October and Neulasta shot the next day. I was very happy that I had absolutely no nausea, constipation


or extreme tiredness. The only se that I have, is that I could constantly eat and the food still tastes the same (better :-). I had no pain what so ever


from Neulasta shot (took Claritan) . I do read that AC is really bad and I am just wondering if round 2-4 usually gets a lot worse, if the first round went so well?


Milane

Comments

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited November 2013


    Hi Milane....I did SIX rounds of AC. I did get more tired from Round 3 onwards, but could still function. I feel worse this week with the cold thingy that is going around than I did at Round 6.


    I would describe life as "dialing things down". My taste changed between rounds 2-3 when I suddenly wanted salty and couldn't stand brassicas. This meant eating a ham steak with peas as opposed to a pork chop with kale. I had minimal nausea, and water worked just fine to quell things.


    If you can get out and walk every day, it will help you stay strong throughout. Plus it gets you away from the food.


    I am sorry you have to go through all this, but there is light at the other end. I thought Neulasta was a great help. I never got sick, and my immune system was just fine. I was so glad for that. Good luck with Round 2. - Claire

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited November 2013

    I did four rounds of dose-dense AC before four rounds of T.  I found that I had very little problem with the chemotherapy, but struggled mightily with the Neulasta short (side effects would slam into me eactly 48-hours after each shot).  No nausea or vomiting, but increasingly uncomfortable acid reflux (which Gavescon helped with).  Taste went metallic and with it my appetite.  Fatigue grew increasingly severe as treatment progressed, but nothing that was too debilitating.  Walking helped.

  • GemStateGirl
    GemStateGirl Member Posts: 168
    edited November 2013


    Hi Milane, congratulations on a good first round with AC! My doctor told me the first round is an indication of how the others will go and I found that to be true. Like you, I had very few side effects with AC or Neulasta and I was thrilled about that. And, if you're having Taxol afterwards, that is usually easier than the AC.


    My only advice is to stick to what you did this round next time. My second round, I cut way back on the water I drank for the first 4 or 5 days of the cycle (from about 10-12 glasses a day to about 8) and I was much more queasy and achy. When I increased the water again for the next cycle I was fine.


    You may never experience constipation but that was the one annoying SE I had and it was from the anti-nausea medication not the chemo. If you do start to experience it, I would recommend doing something about it quickly (colace and miralax worked well for me and were recommended by my oncologist) because you don't want that to go on too long.


    I also had no problems with my taste but didn't really experience any big increase in my hunger. My main problem was I started to crave ice cream and got worried about weight gain. My oncologist's nurse told me the chemo actually increases your metabolism and I think that must have been true for me because I never gained weight even eating ice cream everyday (the tiny Haagen Daaz containers of chocolate peanut butter) but unfortunately it was tough to give that up when I finished chemo so I wouldn't really recommend it since my metabolism definitely slowed down again.


    Everyone is so different and some people do have a hard time with AC but it looks like you lucked out and will have a good experience with it. Hope you continue to feel great.


    ETA: I also walked daily and that probably helped too.

  • stellina
    stellina Member Posts: 69
    edited November 2013

    Hello, Milane!

    My 1st chemo round was exactly one week before yours. Tomorrow I head for the analysis before round 2.

    The SE were not numerous, but those I had were intense:

    - in the first week, extreme sleepiness and fatigue;

    - slight nausea, in spite of getting 3 medications to control it, but only in the first week, afterwards it went away and usually it was stirred by sensing odours;

    - odour sensitivity (that was responsible for the slight nausea) - I felt almost like the main character from Suskind's _Perfume_ !

    - taste has lost its strength;

    - the stools were every second day;

    - in the third week, my hair (head and pubis) starts to slightly come out. Most probably, after round two, they will come out completely.

    Reading the other girls i the discussion, I have to mention that I have almost no appetite to eat, but I had my five portions of food per day - two cooked meals and the other two were either servings of fruit or of vegetables. Since my taste is no longer so strong, I eat raw onions with the cooked meals. In fact, the raw onions were the only food I craved. Along with cucumbers and kiwi.

    (The loss of appetite pre-dates my being diagnosed in August and it has not really returned since. I can't eat when I'm not healthy, I was always like this... :( )

    I started to feel things getting back to normal on day 11 of the cycle: no more fatigue, stools normal and daily, smell sensitivity still present but considerably toned down.

    Now it's time for round two, we'll see how I will manage. My onc told me that the SE might intensify, but she said that usually one doesn't develop other ones, one just has the same, only more intense with each round. (If that's so, then I'm pretty nervous about the nausea part!)

    And finally, it's fundamental to remember that we each react in our own way.

    Good luck and keep going, there's a finish line to this run! :)

    Fond greetings!

  • Cougarlicious
    Cougarlicious Member Posts: 114
    edited November 2013


    I just finished up AC #4 and have been fortunate not to have any side effects, except for light fatigue (which is probably more from my pregnancy). I also kept waiting for the other shoe to drop, or the cumulative effect, but was lucky. Ditto the other post to keep up on hydration - I drank water like a fish the first two infusions and not as much on the last two and I do think I felt more tired as a result. Good luck and hope it stays easy for you!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    Congratulations on #1.


    I did , 6 1/2 years ago, 4 DD A/C. Gave myself the Neulasta cuz I live so far from hospital. Was sent to me by Pharmacy, in dry ice, kept it in fridge.


    SelenaWolf's "metallic" taste was my experience too. Lived on Yukon Gold potatoes, mashed, plain rice, didn't like anything salty.


    Biotine products if you get dry mouth. EMEND ( medication from oncologist) if you get nausea.


    My worst problem was just the opposite of constipation, I took a lot of Immodium.


    Symptoms of fatigue are cumulative, 4th is much more exhausting than 1st, and joyful, cuz you know it's the last one. Hair starts to row back in about 2 weeks, interesting about same time it takes to fall out. I had a buzz cut b4 I started, so no problem with hair falling out.


    Not an experience anyone wold choose, the word I kept hearing, and is true, DOABLE.


    Also kept my favorite Winston Churchill quote in Big Letters on Poster in my bedroom:


    " If you're going through hell, keep going."

  • stellina
    stellina Member Posts: 69
    edited November 2013

    Hello, ladies,

    Milane: any news? If I'm correct, next week you should be up for round 2. How are you? It would be nice to have your news!

    Cougarlicious: congratulations on finishing the treatment! From now on it's recovery time! :) 

    SunflowersMA: can I adopt your motto? :)

    Yesterday I had round 2, so I'm halfway through as well now. The nausea has intensified, in spite of all medicine, but it seems to fade today with all the liquids I drink and the anti-neausea pills (EMEND and granisetron). However, I'm scared about rounds 3 and 4 now. And the ever increasing smell sensitivity is of no help either! I hope both smell and taste will come back to normal when I finish chemo. I know there are more serious side effects than these, but mell and tatse are vita if you are to nourish well to make it through...

    Hair is still on my head, but much thinned out, I need my wig when I get out of the house to avoid feeling cold on the head.

    Also, considering hair: I cut it short, Louise Brooks style, but I preferred not to buzz it since it's easier to clean up afterwards. I also brush it 5 or 6 times a day to remove the hairs detached. My question is: if I don't shave it or buzz it, will that cause problems for the new hair to grow? (Sorry if the question is silly, but it makes me wonder...)

    I hope to have your news soon, girls! Stay strong and keep going, we are offered weapons to fight, so let's use them and win!


  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    The effects from chemo are usually cumulative, meaning they get worse with each subsequent tx. But not everyone reacts the same, so you may be one of the ones that does well. I experienced loss of appetite, loss of weight, and loss of hair. Cut my hair short short short day before the first chemo tx, then shaved it 3 weeks later when it began to pile up on my shoulders. Hair began growing back four months later during taxol tx.


    I also felt fatigued during AC but stubbornly forced myself to hike, go to bikram (yoga), weight lift, etc. as I had before. It may have allieviated other symptoms.


    Claire

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    stellina - I'm sure Winston Churchill would be honored to share his words with you I had a HUGE poster on my wall I made of all my favorite flowers, animals, pictures, with those words in HUGE letters. What ever it takes to help make it all easier.


    Taste, smell, well, they do come back to "normal" - I couldn't deal with ANY extremes of smell, and as for taste, I gave thanks daily for Yukon gold potatoes, mashed, with non salt butter. Could not stand anything with salt. Plain rice.


    Nausea - FRESH GINGER, cut up, made into tea. Ginger Ale at room temperature, few bubbles, flat ginger ale, and with it, I ate salt free soda water crackers, kinda like saltines with no salt. Always felt better with just a little something in my stomach, but never felt like eating. The MOST boring crackers possible, with fresh ginger tea. Felt a lot better than it may sound. I also used a little honey in the tea, which seemed to help my very dry mouth, throat.


    Talk to a nutritionist at your oncology center, both Dana Farber Cancer Institute in Boston, and Sloan Kettering in New York have excellent websites with nutrition information.


    2 down, 2 to go. A better place to be & don't believe all you read. A/C can be easier than many of the other chemotherapies re:SE's.

  • stellina
    stellina Member Posts: 69
    edited November 2013

    Thanks Sunflowers!

    So, I'll just keep going, even if this means going through hell for the time being. Nice idea the flower poster, it must have been excellent inspiration and motivation every day!

    The smell issue worries me a bit because it's also one path to nausea. :S It seems that my taste weakens and the smell becomes a little too bossy. I know both senses are "directed" by the same nerve and maybe the treatment has thrown the nerve slightly off balance, who knows... I just hope i can manage the last 2 treatments. 

    Yet the fact that 1 year of Herceptin awaits me then is also scaring me: nausea is among the main SE listed. :(

    A nutrition plan includes lots of fruit (except garpe-fruit, because it doesn't marry well with epirubicin), green vegetables, red meat (I limit myself to liver and tongue, because they are fat-free and fat just tends to give me nausea in normal times, so I avoid it in these times... I prefer to get the fat from oils and certain vegetables). I also drink lots of ginger tea in the first weak of treatment, then I change to camomile, lime or mint... And I just can't give up my cups of cocoa, they cheer me up too much. Onc told me I should not avoid dairy completely because I need the calcium.

    Thanks for the rice tip, I admit I forgot about it! With herbs it's just fantastic and with curry as well! The crackers are part of my arsenal whenever I don't feel well! But honey... and anything sweet in general, I handle poorly, so for the time being, I avoid. I eat dark chocolate, though. One square every other day, but still, it's chocolate. Also, pineapples are good at controlling nausea.

    Like Claire, I experience acute appetite loss (since diagnosed in August) and I rarely fell hunger, so weight loss is there. But I try and eat 5 times a day. Little portions, but I eat. 

    I really hang on to the fact that there are only two more to go. And I'll just keep going. Which is what I encourage each of us to do. Because it's worth it - there's life, love, beauty out there, and we want it all! :)

     

  • Milane
    Milane Member Posts: 34
    edited November 2013


    Hi Stellina


    My 2nd round was not a nice as the first one :-) but I do not want to complain because I am not in pain (neulasta). They gave me fluids, magnesium, Zantac and some steroids (still trying to find out why steroids again) before my Neulasta shot. My taste is gone and no appetite. Yesterday I felt really tired and had some mild muscle pain. I took a ride on my emotional rollercoaster in the evening and had to let a few tears flow! My hair started coming out 3 days ago. I still have a full head but it is thinning out. It might take a bit longer because I have very thick hair. I am scared to cut it all off, even though I know I should. Today I will go to the grocery store to find me some food :-).


    Milane

  • dlm425
    dlm425 Member Posts: 209
    edited November 2013


    so many people are different if you we're ever pregnant and nauseous you will not do well with chemo!!! That was me I was nonfunctioning and so sick after round three that I skip AC #4 and my onc agreed!! Taxol is a breeze compared to AC!!!! Good luck on your journey I am just back from the exchange my journey here is almost done but always around!!! Enjoy your day

  • dlm425
    dlm425 Member Posts: 209
    edited November 2013


    steroids are usually decadron

  • GrammyR
    GrammyR Member Posts: 702
    edited November 2013

    Milane- I sailed thru 4 rounds of AC with only some low BP. It was the Neulasta that almost killed me. The bone pain was far worse than anythig I had befode or since.It came on 3-4 days post chemo. I could only dull the pain a little with Vicodinn My bladder got a bit week  foo.  on the Red Devil 

  • Milane
    Milane Member Posts: 34
    edited November 2013


    Hi Ladies


    Well I think the first 3 days after chemo were (chemo Tuesday) a little bad for me. On Wednesday after the shot I was tired. Before I went to bed I took vicodin just in case. The next morning was ok and by mid afternoon I felt like I had a mild flu. My muscles were a little sore and I was tired with no appetite. On Friday my appetite came back and by Saturday I was feeling normal again. So all in all not bad actually. My hair has thinned out a lot. I am at day 21 after 2 rounds of chemo and probably lost about 75% of my hair. This weekend I will be going to Dallas for my daughters soccer tournament and then on 26 Nov the 3rd round of Chemo. Oh and tomorrow I have a apt with my Onc and I hope he checks to see if my tumor has had any shrinkage. I think it feels different than it did at first, but I want to be sure. Besides the fact that I have 2 palpable lumps on the left side and 2 small tumors in the right breast that I cannot feel or check on myself.


    Milane

  • BeanBean
    BeanBean Member Posts: 32
    edited November 2013


    Glad I found this thread! I have my first round of AC today and have been getting increasingly freaked out from reading the Nov 2913 Chemo thread - many side affects there. I did notice that many of those women are not doing AC and maybe that's why the difference? During my 2 pregnancies I had very little nausea and never did vomit, so maybe things won't be so bad. A girl can hope : )

  • encyclias
    encyclias Member Posts: 302
    edited November 2013


    Latenightreader, yes, different chemo drugs have different side effects. and even then not everyone gets many of them.


    Good luck with your chemo today; hoping you have no side effects.

  • BeanBean
    BeanBean Member Posts: 32
    edited November 2013


    Thanks. I've got my arsenal ready: Colace, Immodium, Claritin, ginger ale, bland soup, etc.


    Kathy

  • GemStateGirl
    GemStateGirl Member Posts: 168
    edited November 2013


    Good luck, LateNightReader! Don't forget to drink lots of water. It flushes stuff out and will make you feel better sooner.


    Milane, good luck at your appointment with your oncologist. Glad you'll be feeling better for your daughter's tournament.


    I just wanted to recommend a combination headscarf/hat that I wore when I didn't have hair. It called an Abbey Cap and it's made by Turbans Plus. They are so comfortable, stay on with no problem, come in tons of colors and textures, and give some added shape to your head. You can get them on Amazon but I found a local store that catered to cancer patients that sold them for $16. (I tried to put in the Amazon link but it didn't work. If you search for "turbans plus abbey cap" they'll pop up.)

  • kjfromca
    kjfromca Member Posts: 283
    edited November 2013


    I start my first round of chemo on Dec. 5th. I will be having four rounds of AC followed by four rounds of Taxol, if all goes well. I had my heart test today, and I have a chemo consult tomorrow. Can you please post a list of recommended items that I should have on hand to make my life a little more comfortable, since no telling how I will feel. Oh, I will be having the Neulasta shot the day after each treatment. It sounds like the shot is horrible. Should I request pain medication in advance?


    Kim

  • ruthbru
    ruthbru Member Posts: 57,235
    edited November 2013

    I did not have any problems with the Neulasta shot. See how it goes. Lots of people who have bone pain take Claritin (not Claritin D) and find it very effective.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited November 2013


    I did the 4 dose dense A/C...now doing the dose dense Taxol, I have had 7 Neulasta shots...I was so sick on the A/C that the bone pain from the Neulasta was mineable. Now I am gearing up for the last Taxol. Have no idea if its the Neulasta or the Taxol but the bone pain is severe. Yes, I would get pain meds. You might not need them for A/C, but you will for Taxol. Better to have them on hand & not need it then suffer. Harder for the Dr. To call it in now with the new guidelines. Stock up with your normal comfort food. I am still on the baked potato or mashed 4 or 5 nights a week. Easy on my stomach & bland. I eat lots of steamed veggies and a small amount of meat.. The anti nausea meds will make most people constipated, Miralax works for that. As difficult as the treatments are for some, not all, most of us have a stretch of "good days". Do what you normally do. I have been able to continue my walking group, 5 miles usually. On my bad days, making it to the mailbox & light house work is it..Good luck to all who are starting. Being able to communicate with others on this site is very helpful.

  • sonshot
    sonshot Member Posts: 6
    edited November 2013


    my sister found taking one claratin on the day of neulasta shot and then once a day for a couple of days afterward helped prevent the bone pain neulasta can cause.

  • Redroan
    Redroan Member Posts: 168
    edited November 2013


    I will be getting my 6th AC on Wednesday. My first was awful. . I was ok for the first 2 days then nausea and vomitting for a week, The second was much better as they gave me Amend and Aloxi and dexa methasone. I also get Nuelasta shot 24 hours after treatment and have had no problems with that but I take a claritan daily to help with that and aches from zometa when I get that. Good luck to you that are just starting. I am unsure of what is next for me but will hopefully know more on Wednesday.


    Redroan

  • Milane
    Milane Member Posts: 34
    edited December 2013

    Hi Ladies

    Last Tuesday I had my 3 round of AC. So far I have not had really bad side effects. This last round I had flu like symptoms after the Neulasta shot, but by Friday I was better. I told my Onc that I would like some type of scan to see if my tumors are responding. Today I had a Ultrasound on both sides. My left 2 tumors (2.3cm/9mm) TN have shrunk. The 2.3 about 40% to 1.4 and the 9mm about 1/3. My right tumors HER2+(9mm/1cm) cannot be found anymore on the Ultrasound! My last AC is on 10 Dec and then I go on to 12 rounds of Taxol weekly. I hope it all continues like this :-)

    Milane

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