Starting chemo September 2014

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  • Robin73014
    Robin73014 Member Posts: 21
    edited September 2014

    Hello ladies~

    I am sorry for the TMI but has anyone experienced heavy periods during chemo? I have had my 1st infusion ( dose dense) and I am going on Tuesday for my second infusion. I can't imagine dealing with my SE 's and a unusually heavy period.? Arghhhh

  • sybilskelton
    sybilskelton Member Posts: 77
    edited September 2014

    Can I ask a question about the Neulasta?  I've been given so much information that my brain is overloaded, I'd love to have some real world experience. I've just had my first infusion on 9/9 and I'm trying to better prepare for the next round, and I'm trying to determine which SEs were from the chemo itself and which may have been brought on or exacerbated by the Neulasta.

    Are the side effects always just "bone pain"? That's really all the doctor indicated to me, and I didn't experience any specific pain in my bones, so I didn't think to start taking the Claritin. But by the third day I was feeling increasingly bad, headache, fatigue and generalized achiness, very much like the flu, only worse. It finally dawned on me that the Neulasta injection might be more of a contributing factor than I thought so I started with the Claritin. Within 24 hours I was much improved, but that might just be the timing .

    Does this make sense? I'm going to talk to the doctor about it when I see him in a couple of days, but I thought I'd try and get some feedback from the people who really know what this feels like. Thanks.

  • PoppyK
    PoppyK Member Posts: 1,805
    edited September 2014

    Zj- My MO also told me to avoid soy, but not worry about the small amounts of soy in foods.

    Robin- There is no such thing as TMI on the board! If you can't talk about it here, where can we? I haven't started chemo, so I can't answer your question. A heavy period on top of everything else... please no!

    Sybil, I'm interested in hearing what others have to say about your question. I am glad you are feeling better.

  • travlmom
    travlmom Member Posts: 90
    edited September 2014

    Robin - after my 2nd treatment I went into "Chemopause" as of August I had not had another one.  I have now had a hysterectomy so I am DONE!

    syblisketo - I would say you are suffering from side effects of the chemo - I was generally irritated the first week and my lowest day was #7 when the pain from the neulasta took over.  I had not taken the Claritin as I had been advised here.  By day 9 I was feeling 95% human!!  Keep taking the Claritin and if you are feeling queasy use your nasuea meds.  My favorite quotes from my first week when I went in for my 2nd herceptin infustion from my Dr and favorite nurse:

    Dr "Do not be a HERO take the Oxycodone"

    Nurse K "They do not offer those drugs because they are out of Tootise Rolls."   :) 

  • HockeyCat
    HockeyCat Member Posts: 222
    edited September 2014

    Robin - I had a period after my 1st infusion. It was normal. 

    Sybil - I think everyone is different.... I cannot tell you which SEs are from chemo or Neulasta shot, but here's my experience. I was fine on the day of infusion and the shot a day after. I started feeling ill in the afternoon of day 3. I had a horrible bone pain and fever for about 6 days. I took Claritin a day before the shot and continued to take for 5 days, but it didn't help me at all. I felt back to almost normal on day 10. 

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited September 2014

    Does anyone know if I should push myself to exercise?  I had the A/C last Monday and all I've been doing is sleeping, eating a little and resting.   I went to church Saturday night and food shopping yesterday w. Dh and both wiped me out.  There is a senior class at my gym layer but I would really need to push myself to go.

  • Robin73014
    Robin73014 Member Posts: 21
    edited September 2014

    Thank you for the feedback! I did find a thread on this forum regarding unusually heavy periods after first infusion. They say its your ovaries "fighting back". I am concerned wit the amount of blood I am losing so off to the doctor 's! Thanks guys!

  • Zimastar
    Zimastar Member Posts: 25
    edited September 2014

    Thanks travlmom. I did the claritn and although I felt the bone pain, it was only bad a few times.

    Sybilskelton- My husband has offered to get me some but as a former cigarette smoker, I think its a bad idea for me. But rock on if it works for you! 

    Today my joints hurts, feel like I've done a million jumping jacks & lower back pain...maybe from 4-5 days of being able to do nothing but lay around?? My nose is running like a siff & its so dry! My head is on fire & hurts...today is day 6 after my TCH. I've also had a hard time keeping hydrated as eventually everything tastes gross. I've also lost 9 lbs. No complaint there! Anyone else experiencing this??

  • Kris103
    Kris103 Member Posts: 57
    edited September 2014

    ZJ - Push yourself a bit to try to take a walk for a short while every day. But you don't have to push to go to the gym or anything like that unless you really feel up to it. I know there are plenty of women who are able to keep going at a pretty 'normal' pace, but not everyone is like that - I'm sure not! Our bodies are going through a heck of a lot of punishment right now as it is.

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited September 2014

    Thanks Chris.  I spoke to my chemo nurse this morning and she said I could try the senior class at the gym.  They use a chair at all times and nurse said to listen to my body and sit if I feel weak or lightheaded.  I did most of the class and am glad I went.  Wiped out now so shower then down for a nap. Walking is difficult since I have some hip degeneration. Age related I guess since I am 71.  

  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited September 2014

    A&C was rough for me but I have to say a lot of it had to be the Neulasta SEs. I felt like I had the worst case of flu, then got run over by a truck. Every inch of my body ached, even my skin. 

    The 12 weekly Taxol/Herceptin infusions weren't bad compared to the A&C & Neulasta.

  • Timbek2
    Timbek2 Member Posts: 204
    edited September 2014

    Hi all!  I just wanted to pop in and wish you all good luck!  I started chemo 9/20/2012.  It's almost been two years and in general I feel great!  I am at the gym and running around with my 3 kids.  My hair almost touches my shoulders!  I can't tell you how many compliments I get on my hair now.  It's comical.  I also had one period after my first infusion and have not had one since in two years!  So that's a bonus. Sending you all strength and know that you can do this because many others (sadly) have gone before you!!!  Lots of love from your pink sister!

    Becki

  • VioletKali
    VioletKali Member Posts: 243
    edited September 2014

    So yesterday was the day! My first chemo administration. It went very very well, and time seemed to pass by quickly. I had a loading dose of herceptin, along with my taxotere and carboplatin. Pre meds were pepcid, 50mg of benadryl, 10mg decadron, and a dose of an antiemetic that lasts for 3 days. I forget the name of it right off hand, but so far 0 nausea. I did take a compazine last night though,  I was on a decadron high and could not sleep. For home meds they gave me zofran, phenergan, AND compazine to help battle nausea and vomiting. They wanted to make sure I was well prepared.They also invited me to come in for IV fluids if needed from time to time, because that can help if I am feeling nauseated and the meds do not seem to help.

    Dry mouth and nasty taste is what is happening so far. Trident with Xylitol is helping with that.

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited September 2014

    Glad the sides are manageable Violet.  I hope it stays that way.  I felt pretty yucky my first week but  am feeling better now.  Next infusion is Monday.  Today I am supposed to meet my pregnant granddaughter to go baby shopping. It will be nice to get off the cancer planet for a bit.  I made it to the gym yesterday and Bible study last night.  Life goes on one day at a time.   

  • AmyG516
    AmyG516 Member Posts: 40
    edited September 2014

    Day 14 for me and my hair is coming out in clumps.  I'm going to stop after work and get it shaved off.  Trying to hold it together but this whole thing sucks!

  • barremom64
    barremom64 Member Posts: 191
    edited September 2014

    AmyG- I feel for you. Day 19 for me, my hair started coming out in clumps also...and I'm cold capping!  I'm trying to have faith that it will hang in there. I admire your strength for going to get in shaved off- I wish you the best! be strong. 

  • Rose0766
    Rose0766 Member Posts: 92
    edited September 2014

    it seems like it took forever to get here, but had first chemo today, decadron, emend, and then adriamycin/cytoxan, do they really have to make the adriamycin red? The infusions went smoothly, for which I am thankful, I had visions of allergic reactions swimming thru my head, I was drinking fluids the whole time, trying to ward off evil mouth sores, got thru almost 64 ozs, yay me, came home had lunch, and then a knock on the door, it was a delivery man with 2 dozen long stem pink roses from my husband, I AM a lucky woman, cancer aside, of course, this FIGHT is ON, I'm one step of many, many steps on my way, I CAN do this, and so can all you September Ladies! 

  • HockeyCat
    HockeyCat Member Posts: 222
    edited September 2014

    AmyG - I noticed big shedding (not my head yet, but other places....) last night. I'm doing the caps, but noticed more hairs came off when I combed this morning. I'm thinking of you. Hang in there!

    Rose0766 - One down! Glad to hear your first infusion went smoothly. It's very nice of your husband to send you flowers. <3 Love your positive energy. Yes, we can DO this. 

  • Zimastar
    Zimastar Member Posts: 25
    edited September 2014

    Hang in there,  ladies, we can do this. Even though I've already said it three times that I want to quit! Here I sit in the oncology ward. Admitted last night because they thought I might be starting neutropenia. Thank goodness I am not, dehydration and lack of nutrition (nausea) caught up with me. But then they say--but again, we can rule out neutropenia. REALLY???? Pick a theme people!!  I am perfectly fine if I just sit. But with the bone pain, who can do that!?

    So, I am shedding more. Today is day 7. My biggest issue is it feels like my head is on fire in spots and almost like I have hives. And oh the itching!! Anyone else experience this burning; if so, how far into your treatment??

    I'm certain you look fabulous with your new "do" Amy.  Great thoughts for you all!!

  • PoppyK
    PoppyK Member Posts: 1,805
    edited September 2014

    After all we have to go through, losing our hair just seems uncalled for.... When I was diagnosed, I had 6inches of my hair cut off. Since I start chemo next week, I am going to cut it short. I'm thinking a very short pixie cut. I'm hoping this will allow me to adjust a little better. I'm so thankful for you, Amy, Barremom, Zimamaster and Hockeycat for posting when you started shedding/losing hair. I just want to prepare.

    Rose, I am glad your first infusion went well. Thanks for all the advice and info. Two dozen roses from DH, awesome!

    Zima, I hope they figure out how to help you! I'm sorry you are having such bad SE.

    Today I went in for my pre-op for tomorrow's port-a-cath placement. Same stupid forms and annoying questions as before.

    I also visited a local breast cancer support organization to see what they had to offer. Interesting experience. They offer prosthetics, bras, camisoles, hats, scarves, wigs (of all sorts), counseling, support groups (for care givers and families, too), nutrition info. All free, with donations accepted.

    The volunteer/nurse told me I was being very brave. I know she was trying to be supportive, but when I heard that, all I could think of is that I must be missing something... or I am being naïve. Maybe I just have a good "game face". I have three sons, so I'm used to keeping it together in front of others. Does any one else appear this way or hear these types of comments?

  • PoppyK
    PoppyK Member Posts: 1,805
    edited September 2014

    Amy, Your updated picture looks lovely!

  • AmyG516
    AmyG516 Member Posts: 40
    edited September 2014

    Rose - fantastic news that your first infusion went so well. You're right - we can do this one step at a time! And your husband sounds amazing - how thoughtful!!

    HockeyCat - yup shedding everywhere here too. Didn't have to shave at all when I showered tonight. Small bright spots in this whole mess!  

    Zimastar- I'm so sorry to hear you were admitted!  Enough is enough!   

    My son went with me to have my head shaved. He told them I needed a #2 buzz, the same one he always gets. I'm very thankful he was with me!  The fuzz that's left will be gone soon.  Feeling good for taking control and just doing it. Get out of the way cancer I'm coming through!

  • AmyG516
    AmyG516 Member Posts: 40
    edited September 2014

    poppy- I had very long hair when I was diagnosed. I cut it shoulder length before my surgery, figuring I would need chemo.  It really helped make this transformation less traumatic.  Love the pixie cut idea - go for it!!

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited September 2014

    Hey ladies, I also had 8 inches cut off.  14 days will be Monday.  I guess I will say goodbye to the rest of it soon.. My new mantra BALD IS BEAUTIFUL!  About the red Ariamycin,  I read a book called "Red Sunshine"  by a doctor who had breast cancer.  She nicknamed the A, red sunshine since it was saving her life.  Just another way to look at it.  I loved going shopping with my grandaughter today.  Got her, some cute maternity cloths.  Such fun to get off the cancer planet for awhile.  Then we met my Dtr for an early dinner.  Nice. 

  • HockeyCat
    HockeyCat Member Posts: 222
    edited September 2014

    Amy, love your new profile pic. I admire your positive attitude and taking control of it. One more week till our second infusion. Stay healthy!

  • AmyG516
    AmyG516 Member Posts: 40
    edited September 2014

    thank you so much HockeyCat!  It is going to take some getting used to though!  Wondering how everyone is going to react to my new "do" at work today.  I've warned them to stay out of my office if they are feeling sick at all no matter what. I don't want anything to keep me from getting the 2nd infusion next week.  Putting myself first for a change!  

    Hang in ther ladies - we will do this together!!!

  • melannmor44
    melannmor44 Member Posts: 14
    edited September 2014

    Started my first treatment this Monday 9/15.  Neulasta injection  9/16.  I haven't had any side effects yet, except for flushing of my face the next day. I will have 3 more treatments, I'm taking them 3 weeks apart.  Hoping to not have to nausea and vomiting side effects.  My meds are Cytoxan/Taxotere.

    IDC Stage I ER/PR+ Neu2-

    0/2 nodes

    BRCA-

    1cm tumor

    UMX 8/15/2014 with Tissue Expanders

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited September 2014

    A little sternum pain since last night.   Wondering if it's from the neulasta last week?

  • melannmor44
    melannmor44 Member Posts: 14
    edited September 2014

    My doc suggested Zyrtec for the bone pain.  I took one the day of the Neulasta, yesterday 9/16/2014 and he suggests to continue for 5 days.  I have slight back pain this morning, but anytime my body starts fighting anything my lower back takes the hit first.

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