Starting to get nervous about this round of chemo

Brooklynchele
Brooklynchele Member Posts: 123
edited March 2014 in Breast Cancer #1
Sorry to bother everyone but I really felt the need to "tell someone" and great as he is, my boyfriend really doesn't understand. I'm scheduled for my second round of chemo (TC) tomorrow at 8 a.m. EST and am pretty scared. I'm not too worried about tomorrow or Friday, but I am worried about the days after that.

After my first round of chemo I reacted very badly beginning a few days after the chemo with severe bone/joint/muscle pain. I was sent to the hospital the Tuesday after chemo because the doctor was worried that the pain in my chest/ribs might be a pulmonary embolism. After multiple tests and 8 hours in the ER they diagnosed chemo related pain. (Thankfully not an embolism).

My onc thinks the severe pain may have been caused by the Neulasta injection I received on the day after the chemo so he's not ordering it this round. He also prescribed Vicodin for pain but I'm nervous about taking it because I've never had it before and have multiple drug allergies.

I had seriously considered completely discontinuing the chemo after the first session. After some thought and my onc's suggestion to try it without the Neulasta I decided to try one more time. Still, I'm terrified that the same level of pain will start again.

Well, that's about it. I just needed to get that out. I know I'll get through this...

Thanks for listening!

Michele
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Comments

  • Grandma X 6
    Grandma X 6 Member Posts: 135
    #2
    Chemo
    Michelle chemo is never easy, but it sounds like you had a really bad time. I'm so sorry that happened to you. I finished my chemo end of January I was uncomfortable but not much pain.I did have the Nelesta I did get aches a few times but Tylenol helped.It only lasted a day not much longer.I know how scary this all is but just think after this one you will 1/3 through.(I had 6). Keep the faith it will be easier.Cancer Sucks. Your in my prays. Let us know how you do. GOOD luck CINDY
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #3
    Hi Michele,
    Sorry you had such a rough time with your chemo. Hopefully, this time will be better. Sending positive thoughts & prayers your way. Hugs, Jean
  • Marsha Mulvey
    Marsha Mulvey Member Posts: 597 Member
    #4
    Grandma X 6 said:

    Chemo
    Michelle chemo is never easy, but it sounds like you had a really bad time. I'm so sorry that happened to you. I finished my chemo end of January I was uncomfortable but not much pain.I did have the Nelesta I did get aches a few times but Tylenol helped.It only lasted a day not much longer.I know how scary this all is but just think after this one you will 1/3 through.(I had 6). Keep the faith it will be easier.Cancer Sucks. Your in my prays. Let us know how you do. GOOD luck CINDY

    sounds like
    Sure sounds like you had a difficult time. Hoping this time (especially without Neulasta) goes much better for you. Good luck!
    Marsha
  • MomMichelle
    MomMichelle Member Posts: 93
    #5
    Sorry your first round did
    Sorry your first round did not go well and I really hope you oncologist is right in thinking the pain is from Nuelasta. I have heard so many people have problems with it. I will be praying that all goes well this time around. Hang in there.
    Positive thoughts and hugs,
    Michelle
  • Brooklynchele
    Brooklynchele Member Posts: 123
    #6
    Thank you to everyone that responded
    It really means a lot to me.
    Hugs to all of you!

    Michele
  • carriesoup
    carriesoup Member Posts: 144
    #7
    Brooklynchele said:

    Thank you to everyone that responded
    It really means a lot to me.
    Hugs to all of you!

    Michele

    **hugs**
    i hope the after math of your second round is not as terrible!
    i am right there with you sister :)
    my second round is on friday at 8am. i'm so glad that my neulasta is 3 days later. (maybe that will be an option for you??) i was still exhausted from chemo, terrible migraines and neck pain (not as bad as the 2 days prior though) the neulasta gave me horrible joint/muscle aches too. i took the vicodin (tylenol and ib didn't help at all) it really helped a lot. i can understand your worry, if you have allergies to meds.

    hang in there! i'll be thinking about you

    xoxo
    carrie :)
  • Snowkitty
    Snowkitty Member Posts: 295
    #8
    I had serious pain from
    I had serious pain from Neupogen shot (similar to Neulasta), so my Onc didn't let me have it again. Chemo worked out fine after that because I knew what to expect as far as nausea, taste, etc. and how to work with it. I didn't have to worry about joint/bone pain from the shot.

    Please give chemo another chance. It will go so much better without the Neulasta.

    Good luck tomorrow.

    Cindy
  • jo jo
    jo jo Member Posts: 1,175
    #9
    Michele hi...I had a bad
    Michele hi...I had a bad first reaction to chemo that also put me in the hospital with a fever of 103 and my second round they gave me the neulasta shot and 4 or 5 days later i had very painful bone and joint pain to were it was almost to hard to walk but the more i walked the less it hurt unless i over did it then i was back to square one. The 3rd round then wasnt as bad...but it was different each time i did chemo...sometimes it hurt sometimes it didnt.
    Im glad that they found it wasnt an embolism!
  • sparkle1
    sparkle1 Member Posts: 242
    #10
    carriesoup said:

    **hugs**
    i hope the after math of your second round is not as terrible!
    i am right there with you sister :)
    my second round is on friday at 8am. i'm so glad that my neulasta is 3 days later. (maybe that will be an option for you??) i was still exhausted from chemo, terrible migraines and neck pain (not as bad as the 2 days prior though) the neulasta gave me horrible joint/muscle aches too. i took the vicodin (tylenol and ib didn't help at all) it really helped a lot. i can understand your worry, if you have allergies to meds.

    hang in there! i'll be thinking about you

    xoxo
    carrie :)

    Welcome Carriesoup. My
    Welcome Carriesoup. My oncologist told me that you have to take the neulasta shot within 48 hours of chemo. You may want to discuss with your dr. Has anyone else heard this?
    Sparkle
  • mwallace1325
    mwallace1325 Member Posts: 806
    #11
    I'm sorry
    I'm sorry you had such a rough time with the first round. The fact that your onc cancelled the neulasta shot may be the thing that makes the difference. Hopefully by now, you're just about finished and the week end will be easy for you. Remember, this is now two less you have to face in the future.

    Please keep us posted on how things are going.

    marge
  • cookie97
    cookie97 Member Posts: 200
    #12
    mwallace1325 said:

    I'm sorry
    I'm sorry you had such a rough time with the first round. The fact that your onc cancelled the neulasta shot may be the thing that makes the difference. Hopefully by now, you're just about finished and the week end will be easy for you. Remember, this is now two less you have to face in the future.

    Please keep us posted on how things are going.

    marge

    Nuelasta shots
    I'm sorry to hear that your first round of chemo was so difficult. My reaction to the chemo wasn't too bad (I had the same cocktail) but the Nuelasta shot was tough. I knew that it was the Nuelasta because I did chemo on Friday then had Nuelasta shot on Monday. After 3 days the pain in my hips and thighs was excrutiating, Tylenol did ease it some and I would take something to help me sleep. I've heard that if you take Claratin without the D it helps (don't ask me how) with the joint pain from the Nuelasta. Didn't take it myself as I have problems with antihistamines.

    This information is probably a moot point by now, just figured if someone else runs across this post may be wondering the same thing.

    Taking the Nuelasta shot the day after chemo is probably better for the patient, but when you have chemo on a Friday your only option for the shot is Monday.

    Hope this information helps.

    Peace and Love,
    Edie
  • Brooklynchele
    Brooklynchele Member Posts: 123
    #13
    2nd chemo round over!
    I spoke with the onc nurse about discontinuing the Neulasta and she agreed that it was def. the Neulasta that caused the pain. Apparently her cousin had the same problem and they discontinued the Neulasta and the subsequent chemo rounds went without the same complications. Later during my infusion, the pharmacist came in to discuss how I did with all of my meds and I told him about the side effects from the Neulasta. He recommended to me (and I'd seen this on some of your posts) that if in the future I need to go back on the Neulasta, I should get Claritin 10 mg (not sure if this dose is prescription or not) and take it for 5 days beginning the day I get the infusion.

    The second round is over but wasn't smooth sailing. I reacted to the taxotere (again) but this time instead of just getting the low back pain, I also got a sharp pain in my chest, had difficulty breathing and then it felt as if someone lit a fire in my chest that crept up into my face. My boyfriend told me my face turned completely red. The onc nurse stopped the infusion, checked my blood pressure and found it had jumped to 197/96 and called in my onc. He checked my heart and all was fine. The symptoms subsided. They infused more steroid to help stop the reaction when the taxotere was restarted. So all's well that end's well my friends. Happy to home now :)
    Michele
  • Brooklynchele
    Brooklynchele Member Posts: 123
    #14
    2nd chemo round over!
    I spoke with the onc nurse about discontinuing the Neulasta and she agreed that it was def. the Neulasta that caused the pain. Apparently her cousin had the same problem and they discontinued the Neulasta and the subsequent chemo rounds went without the same complications. Later during my infusion, the pharmacist came in to discuss how I did with all of my meds and I told him about the side effects from the Neulasta. He recommended to me (and I'd seen this on some of your posts) that if in the future I need to go back on the Neulasta, I should get Claritin 10 mg (not sure if this dose is prescription or not) and take it for 5 days beginning the day I get the infusion.

    The second round is over but wasn't smooth sailing. I reacted to the taxotere (again) but this time instead of just getting the low back pain, I also got a sharp pain in my chest, had difficulty breathing and then it felt as if someone lit a fire in my chest that crept up into my face. My boyfriend told me my face turned completely red. The onc nurse stopped the infusion, checked my blood pressure and found it had jumped to 197/96 and called in my onc. He checked my heart and all was fine. The symptoms subsided. They infused more steroid to help stop the reaction when the taxotere was restarted. So all's well that end's well my friends. Happy to home now :)
    Michele
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #15
    Hugs, Prayers , & Well Wishes
    Hugs to you Michelle. I will pray your 2nd time at chemo go fine for you. Hang in there.
    BL
  • Skeezie
    Skeezie Member Posts: 586 Member
    #16
    Bella Luna said:

    Hugs, Prayers , & Well Wishes
    Hugs to you Michelle. I will pray your 2nd time at chemo go fine for you. Hang in there.
    BL

    Hi Michele,
    Hope you are feeling ok right now. I always was walking on egg shells waiting to get sick on my first, second and third day. But I was never disappointed on the 4th day. I was always sicker than dog from chemo. I also had C/T. I was stage 2A, TNBC, Invasive ductal. The nuelasta was the worst the first time and after that Tylenol helped. I, like you, do not like Vicodin, but I did take it if I felt I needed it, but made sure I had a full stomach first.

    I know you are having a difficult time, how many infusions are you scheduled for? I was scheduled for 4, but we thought if it went well we mite throw in 2 more, but I was too sick and we stopped at 4. Which my onc said was protocol and I wasn't putting myself in greater danger of a recurrence. Please hang in there with your chemo. It's tough, I know. It was the hardest thing I have ever done. But cancer left untreated, will win. There are so many good Rx's out there for side effects and your team sounds like they are on the ball.

    I had heard about the Claritin, I took that everynite for allergies anyway so I can't say if it helped. But what I do know is this....I lived thru chemo and at times I thought I mite not....TNBC is very agressive and we need to throw everything we can at it. It is doable. On the good part, agressive cancers react very well to chemo. The point of chemo is to find any tiny cell that has not been detected (anywhere in our body) and kill it. Please hang in there, it's really something you need. It won't last forever and you will be good again, although right now it's hard to see the end of it.

    I will be thinking of you and praying for an easier time with the second round. If you take a Vicodin, make sure you are not alone if you are worried about a reaction, I did. But of course your onc will advise you on all of these matters and then you make your decision based on what is best for you.

    Please keep us posted how you are doing. We are all lending you strength.

    Hugs, Judy :-)
  • cahjah75
    cahjah75 Member Posts: 2,631
    #17
    Michele
    welcome to the bc network. I'm so sorry that your 1st 2 chemo treatments have not gone well. You don't mention what cocktail you're on or how many treatments you'll be having. I certainly hope the pharmacy & your oncologist can figure something out so you don't have these reactions. I had my 3rd chemo on Tuesday (Taxotere/Cytoxan) and Neulasta shot yesterday. I don't have a reaction to the Neulasta until late Friday and extra strength Tylenol helps with my bone pain. I usually feel better by Monday morning. I have osteoarthritis so I have arthritis meds to take too. I guess I'm use to having bone pain. I also have lumbar spinal stenosis and the Neulasta pain I do get is in my back. After chemo I do have some labored breathing and swelling but nothing that doesn't go away within a few days. Hope you're feeling better.
    {{hugs}} Char
  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #18
    Wow, I am so sorry that you
    Wow, I am so sorry that you are having such a terrible time. My heart goes out to you. I sure hope that things go better for the rest of your treatment. You are in my prayers and thoughts. Stay strong Take care Kay,
  • Brooklynchele
    Brooklynchele Member Posts: 123
    #19
    Skeezie said:

    Hi Michele,
    Hope you are feeling ok right now. I always was walking on egg shells waiting to get sick on my first, second and third day. But I was never disappointed on the 4th day. I was always sicker than dog from chemo. I also had C/T. I was stage 2A, TNBC, Invasive ductal. The nuelasta was the worst the first time and after that Tylenol helped. I, like you, do not like Vicodin, but I did take it if I felt I needed it, but made sure I had a full stomach first.

    I know you are having a difficult time, how many infusions are you scheduled for? I was scheduled for 4, but we thought if it went well we mite throw in 2 more, but I was too sick and we stopped at 4. Which my onc said was protocol and I wasn't putting myself in greater danger of a recurrence. Please hang in there with your chemo. It's tough, I know. It was the hardest thing I have ever done. But cancer left untreated, will win. There are so many good Rx's out there for side effects and your team sounds like they are on the ball.

    I had heard about the Claritin, I took that everynite for allergies anyway so I can't say if it helped. But what I do know is this....I lived thru chemo and at times I thought I mite not....TNBC is very agressive and we need to throw everything we can at it. It is doable. On the good part, agressive cancers react very well to chemo. The point of chemo is to find any tiny cell that has not been detected (anywhere in our body) and kill it. Please hang in there, it's really something you need. It won't last forever and you will be good again, although right now it's hard to see the end of it.

    I will be thinking of you and praying for an easier time with the second round. If you take a Vicodin, make sure you are not alone if you are worried about a reaction, I did. But of course your onc will advise you on all of these matters and then you make your decision based on what is best for you.

    Please keep us posted how you are doing. We are all lending you strength.

    Hugs, Judy :-)

    Thanks Judy to answer your question -
    I am scheduled for 4-6 infusions. My onc said 6 is protocol but I asked him if we could fudge it and go with the standard for early stage cancer (the 4 rounds) since mine was a IIB. I really don't know how many I will actually do. I will try to get them all in but am taking it day by day.

    Since the Neulasta isn't always necessary I am hoping my body/white blood count will rebound without it. I suppose I'll know better when I see how the next few weeks go between rounds and what ultimately the blood test shows my blood count did.
    Hugs, Michele
  • Brooklynchele
    Brooklynchele Member Posts: 123
    #20
    cahjah75 said:

    Michele
    welcome to the bc network. I'm so sorry that your 1st 2 chemo treatments have not gone well. You don't mention what cocktail you're on or how many treatments you'll be having. I certainly hope the pharmacy & your oncologist can figure something out so you don't have these reactions. I had my 3rd chemo on Tuesday (Taxotere/Cytoxan) and Neulasta shot yesterday. I don't have a reaction to the Neulasta until late Friday and extra strength Tylenol helps with my bone pain. I usually feel better by Monday morning. I have osteoarthritis so I have arthritis meds to take too. I guess I'm use to having bone pain. I also have lumbar spinal stenosis and the Neulasta pain I do get is in my back. After chemo I do have some labored breathing and swelling but nothing that doesn't go away within a few days. Hope you're feeling better.
    {{hugs}} Char

    Char...
    Thanks for the welcome! I'm on TC like you. 4-6 rounds planned. I also have arthritis although mine is juvenile rheumatoid. I don't take any meds for it right now though because my rheumatologist wanted to put me on a monthly injection and I wasn't ready for a monthly commitment to an injected medicine. (HAHAHA! That was before the cancer diagnosis. It seems funny now.)
    Hugs,
    Michele
  • chriskaput
    chriskaput Member Posts: 109
    #21
    neulasta
    Your pain definately has to be from the Neulasta shot. I had body aches from head to toe each time I had the shot the day after my chemo treatment. I took ibuprofen for the aches and most of the time it helped. Hope you have an easier time without the shot on your next treatment.

    Chris, NY

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