Starting Chemo May 2017

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  • rdsm
    rdsm Member Posts: 68
    edited June 2017

    msrobin58: this is my second time going down the chemo path. Last time was in 1999. it is so important to have open communication with your doctors. They don't know what is going on with you unless you tell them. There are so many medications and other things that they can do so that you don't have to have an awful experience. (not that any chemo experience is a picnic in the park). My motto was "If I don't ask, I don't get". You need to be your own advocate and ask for what you need. Don't be afraid to ask. You may surprised at how they respond. wishing that you feel better in the days to come.

  • lrwells50
    lrwells50 Member Posts: 254
    edited June 2017

    msrobin58, I wish I could give you my nausea meds that I haven't needed. From what I've read on these boards, TC must be less likely to cause nausea. Of course that's not to say I won't need them after chemo #2, but I think the Red Devil must really be hard on people.

  • BJI
    BJI Member Posts: 154
    edited June 2017

    HapB - no nausea at all, slept fairly well and woke up with lots of energy. They warned me about that side effect of steroids. No rosy cheeks. Did some housework, mowed lawn, cooked supper, probably overdid it, but felt fine so kept at it. I realize that it probably won't be as smooth each week, but am feeling very upbeat after the 1st treatment. I guess we'll see what next week brings.

  • notanisland
    notanisland Member Posts: 142
    edited June 2017

    After brushing my teeth this morning I noticed that there were many single hairs scattered in the sink. I lost more strands as I ran my hands through my hair. I wasn't expecting it quite so soon (14 days into AC chemo) or so suddenly, but today was also tentatively Day 1 of AC Chemo 2 and I had bigger things to worry about - namely, would my WB neutrophil count be high enough to go ahead with infusion?

    Well I'm happy and grateful to report that the Neulasta finally kicked in and my neutrophil count (the part of the total WBC that fights infection) went from .03 to 6.1 in 5 days. A neutrophil count of 1.0 is required for chemo infusion, so Neulasta did it's job (albeit a little slowly. My NP says I may have "naive" bone marrow.) It was 2.9 before my very first infusion on 5/18, so Neulasta has really given even my normal count a boost.

    It's possible that when I go in for a blood test in a week, my count will be very, very low again, but I'm willing to isolate myself for the rest of June if I must! Luckily, I work at home for the most part.

    Greedy thing that I am, I'm hoping that Chemo 2 is a repeat of Chemo 1 in terms of other SEs. Fingers crossed for none. Wishing the same blessings for each of you. Hugs : )

    P.S. MsRobin, Sounds like the change in your chemo treatments (from every 2 to every 3 wks) may solve multiple issues and provide time and justification for much needed SE meds. I too would gladly give you my Compazine and Lorazepam, which so far have gone to waste. So frustrating! I hope your insurer comes to the right decision - quickly. No one should have to suffer from debilitating nausea. Stay strong. We're with you!


  • moodyblues
    moodyblues Member Posts: 470
    edited June 2017

    MsRobin  I so wish I could send you some anti nausea meds!  My first Chemo was May 31st and the next morning I felt queasy, not sick but queasy.  I took my anti-nausea meds and felt better!  I have found that several times I have had to push HARD to get what I felt was necessary, the doctors looked at me like I was being a wench but, they listened.  I pray that you will get the meds you need.

  • lovepugs77
    lovepugs77 Member Posts: 296
    edited June 2017

    Msrobin, I hope they get the anti nausea meds worked out for you.

    Notanisland, my hair is coming out pretty quickly, too. I'd say at least 10 strands at a time when i just run my hands through it. Has your scalp been tender? Mine has been since Monday or Tuesday. When I saw my MO yesterday before my infusion, he said it was a little early for hair loss (in his experience, it usually comes out quickly around day 18), but since my scalp was already tender, he expected it to fall out quickly over the next 2-3 days. It is coming out much faster today than yesterday, so I expect that I will shed like crazy tomorrow and Sunday. I'm going wig shopping tomorrow, so that should be interesting. My MO's office just faxed a "cranial prosthesis" prescription so it will be dated before the purchase, and maybe I can get some reimbursement from insurance.

    So, update on me: The Neulasta worked REALLY well for me. My WBC count yesterday was actually high, at 15.4. I feel very fortunate after reading some of the stories on here. My SE from infusion #2 have been pretty much the same as with #1. No nausea, but I'm tired. I do seem to have the steroid rosy cheeks today. I don't know if I just didn't notice that last time, or if I didn't have it. Other than that, so far so good! I'm glad to be 50% done with AC, and 25% done overall!

  • BCFighter2017
    BCFighter2017 Member Posts: 45
    edited June 2017

    i am done with my AC #3 yesterday,,,one more to go and then 4 DD treatments of taxol

    As far SE are concerned , its almost same as last time , quite manageable. I am making sure to drink lots of water and keep active as much as my body allows.

    Nuelasta worked for me as well. My count was 12.2 yesterday which was high


  • notanisland
    notanisland Member Posts: 142
    edited June 2017

    Yes, lovepugs, the start of my hair loss was preceded by slight scalp tenderness, and it happened very suddenly. Up til day 13 I had no hair loss, barely even normal hair loss. Guess the tide has turned! At least we know the chemo is working!

    I have a wig that needs thinning and trimming which my hairstylist will do for me on 6/12 when she returns from vacation. She was also going to cut my chin-length hair much shorter, but in 10 days that may not be necessary! When I feel the need to, I'll start wearing scarves out. But because I'm playing it safe while I see if the Neulasta shot I'm receiving today works faster on stimulating neutrophil production, I don't expect that I'll be attending client meetings in the next couple of weeks. My main clients have been very understanding and so far have had no problem with communicating with me by email. I'm very fortunate. No deadlines missed, most beaten.

    Glad the Neulasta worked so well for you! If I hadn't had my labs done on Day 9, I would never have known that my neutrophil count was .03 (total WBC 1.6) at nadir. I had planned to attend a luncheon that day, and instead got sent home from the onc lab with a face mask and antibiotic soap! Off to get my Neulasta shot now. Wish I could do something to improve my body's sensitivity and reaction to these drugs - but even the pre-chemo steroid doesn't affect me much - no rosy cheeks!


  • lrwells50
    lrwells50 Member Posts: 254
    edited June 2017

    My hair started coming out a LOT on yesterday, day 13. I had already made an appointment to get my hair buzzed, but the stubble does hurt, even worse than when it was just a little longer, but it was coming out so fast I thought it would be better at about 3/4". I guess time will tell. I wore a wig to the grocery store then to work this morning, but it did itch off and on. Sometimes I'd not even notice it, then I'd just want to take it off and scratch everywhere. Made it to about 3:00 and called it quits. Maybe once everything that's going to come out has come out, I won't have the mild pain/itching thing and the wig will be bearable. Definitely the worst side effect so far by a long shot

  • BJI
    BJI Member Posts: 154
    edited June 2017

    After 2 really good days, day 3 & 4 kicked me down. Severe bone pain, tring the Claritin and ibuprofin. Seems a little better this evening so hoping tomorrow less pain. Did have to take anti nausea med yesterday and today. Also got out the stool softness and miralax. Feelng a little bummed, but hope it's just temporary. Enjoying the day with family at the lake.

  • ella421
    ella421 Member Posts: 12
    edited June 2017

    Hi all - just had my second chemo FEC and overall I am on day three taking all anti nausea meds and hanging in altho a general queasy feeling always there. I go to my naturopath on Monday for accupuncture which helped alleviate the queasy feeling after last chemo. Only one more FEC and then D.....any suggestions for sensitive scalp when hair is falling out? I did have my hair Gi Janed so it's short but still hurts on scalp.

  • notanisland
    notanisland Member Posts: 142
    edited June 2017

    BJI, next time try taking the Claritin 30"-60" before Neulasta. That's what I was told to do and haven't had any bone pain. Also told to take Tylenol or Advil too if needed, but I haven't had to. Not sure I would have had bone pain at all, but I continue to take the Claritin every 24 hrs for 4 days just to be safe (at least it can help with my hay fever). In your case take it as long as you have pain. Nice that you're enjoying family time at the lake

  • notanisland
    notanisland Member Posts: 142
    edited June 2017

    Ella421, I have no solution to scalp tenderness but have you tried Sea Bands for your nausa? They place pressure on the area about three fingers below the inside of each wrist and people say they work.

  • MomAngel
    MomAngel Member Posts: 28
    edited June 2017

    notanisland - is Neulasta the one you get put on you after chemo and then 24 hours after chemo it starts to inject the medicine in you? Do you feel the needle?

  • Charley99
    Charley99 Member Posts: 2
    edited June 2017

    I had a touch of queasy for two days. Thankful for the Zofran. Also had bone or joint pain in my knees and hips until day 5. I am taking Claritin every day. The worst so far though was my mouth. Oral thrush! I had severe throat pain and white patches all over. I got a prescription for Diflucan and it is much better now. I could barely swallow water. No hair loss yet. Today is day 11. Treatment 2 is Thursday! One more down....

  • NCBeachGirl
    NCBeachGirl Member Posts: 66
    edited June 2017

    MomAngel, Yes, Neulasta is the cartridge thing they stick on you when you are finished with your infusion. Some people have to drive back to the cancer center to get an injection of Neulasta instead. The cartridge makes that step unnecessary, as the cartridge automatically dispensed the drug 27 hours after your infusion was done.

    The cartridge thingy is really clever. They peel off a sticky backing and then they have 3 minutes to stick it on your body (either your arm or your tummy) before it automatically inserts its needle. It barely hurts, just a little snap. The thing inserts a needle in your flesh, then a tiny catheter stays in your flesh and the needle withdraws back up into the cartridge. So you walk around for 27 hours with this thing blinking on your tummy--it has a little neon green light that blinks every couple seconds to let you know all is working okay. If the light turns red, you're supposed to call the cancer center.

    There is a little window in the cartridge that looks like the thing on a pregnancy test stick. It shows whether the cartridge is full or empty.

    27 hours after you finished your chemo infusion, the damn thing starts beeping at you!! (Surprise!!) then it starts clicking and the green light blinks faster. This is how it acts when it's dispensing the drug. Takes about 45 minutes or an hour. Then it beeps again to tell you it's done. You're supposed to check the window and make sure it indicates empty. The light will be solid green at this point, no blinking. You won't feel a thing. When you are sure it's done, you're supposed to peel it off like a band aid (make sure to look at the diagram they give you, peel it from the correct end first). When it's off your body, you can see the teeny tiny little catheter at one end of the underside of the cartridge.

    They tell you to check for any leaking, and let them know if it doesn't dispense properly or leaks.

    All in all, it's a damned clever little thing!! Oh, I have a picture of it. I don't know if we can post pix on here. If not, private message me and I'll send it to you.

    Everybody recommends you take Claritin for a day before and 5 days after the Neulasta injection to avoid bone pain. I did, and I had no pain whatsoever.

    I had them put my cartridge on my tummy because I usually sleep on my back.

  • lrwells50
    lrwells50 Member Posts: 254
    edited June 2017

    Be sure and take the Claritin, because while my pain wasn't bad, it wasn't fun, either. Mostly controllable with ibuprofen

  • NCBeachGirl
    NCBeachGirl Member Posts: 66
    edited June 2017

    Let's see if I can send a pic of Neulasta cartridge. OMG! It worked! This is what it looked like after I peeled it off my stomach. Like the cute little green light? Haha

    image

  • NCBeachGirl
    NCBeachGirl Member Posts: 66
    edited June 2017

    Well, that was fun! (Posting about Neulasta cartridge) My mom and I got a real kick out of the little thing. It is fun to share about it.

    I'm going for my 2nd chemo on Monday morning. Not sure if they'll give it to me tho. My blood counts must have been super low after the first chemo because I got shingles and two other infections. I'm hoping the counts are up enough that they'll give me the chemo. Don't really want to drag this out any longer than necessary.

    So... when do we start losing our hair? Is it after chemo #2 or chemo #3? Ugh, not looking forward to it.

    And I'm getting icky moisture at my inner thigh creases...hoping I can manage to avoid getting some kind of infection. Geez, do these side effects ever end? Don't answer that!



  • lrwells50
    lrwells50 Member Posts: 254
    edited June 2017

    My MO doesn't require a blood test except before each chemo, so I'm guessingthey just assume most people will need it.

  • MomAngel
    MomAngel Member Posts: 28
    edited June 2017

    I won't have a blood test except before each chemo as well.

  • ella421
    ella421 Member Posts: 12
    edited June 2017

    hi notaisland - I have tried them and they work somewhat but the accupuncture was more effective for several days...

  • rdsm
    rdsm Member Posts: 68
    edited June 2017

    I only get a blood test the day of chemo as well. I had to give myself the neulasta shot. It's so tiny. I think my pinching my tummy was more painful than the shot itself. I did have joint pain and nothing seemed to help. I already take Claritan for my seasonal allergies. I am going to try to stay on top of it better this time around (Chemo #2 is tomorrow) with Advil. I'm wondering if I could have blood drawn in between treatments this time to see if I even need to take the neulasta and only take if necessary. I'd prefer an extra blood draw over the joint pain that I had.

  • ella421
    ella421 Member Posts: 12
    edited June 2017

    Love pugs me 2....4 to go....this too shall pass!

  • Castigame
    Castigame Member Posts: 752
    edited June 2017

    rdsm,

    I personally think Neulasta is overrated and overpriced. My recent WBC were 9.5 9.04 14.93 (w steroid) 24.48 (w steroid again) the additional bone pain which keeps me out of commission for three full days definitely offsets 99% of benefit.


    My chemo day is Tuesday which means neulasta kicks in Wednesday night and Thursday night is the peak for me. As soon as I can rip neulasta out of my belly, I take an hour long epsom salt bath, take claritin, Tylenol and my happy pill, Ativan


    Mimi

  • lrwells50
    lrwells50 Member Posts: 254
    edited June 2017

    I have a blood draw before each chemo, so I'm assuming my WBC was low enough that I needed it

  • BJI
    BJI Member Posts: 154
    edited June 2017

    notanisland- I am not taking Neulasta, so I assume my bone pain is from the taxol. It is much better today.

  • BJI
    BJI Member Posts: 154
    edited June 2017

    HapB- I am scheduled for blood draw each week before infusion, no discussion about Neulasta being used.

  • BJI
    BJI Member Posts: 154
    edited June 2017

    HapB- I am scheduled for blood draw each week before infusion, no discussion about Neulasta being used.

  • rdsm
    rdsm Member Posts: 68
    edited June 2017

    HapB: I'm being treated at MGH and was prescribed neulasta. I have my 2nd treatment tomorrow and will discuss with my MO to see if I can skip it.

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