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Starting Chemo in November 2017

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  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    I’m from July and August chemo group, just stop by and visit. I just finished my chemo last Friday, if you have any questions I can answer. I started with AC and it was tough but doable. My down days for AC was day 4 to day 6, on those days i have no appetite and fatigue. First two rounds of AC wasn’t bad, the last two was tough. I had some mouth sore, constripation, fatigue, some joints pains and lost all my hair.

    With taxol I did weekly, it wasn’t bad on the first four infusion, #5 Neuropathy started so my hands and Feet started numbness, fatigue hit hard also. Basically I have to take a nap afternoon. One thing dealing with fatigue is walking. I will try to walk every day so it helps your fatigue and joints pains also. Keep drinking fluids your body needs it. I’m taking B6,and B 12 for my neuropathy and still can’t stop it.

    I hope my info help, be strong!


  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    hi mermaidmom, so sorry you have to do battle again, really hoping your pathology comes back good and you have 4 instead of 6 rounds. I just finished 4 rounds of AC, and have started on Taxol. I officially started end August but only got one round in before a wound infection delayed me till Oct. So I guess I'm really an October starter.

    Anti nausea meds are really good, and generally keep it under control. I had some nausea on AC, none on Taxol so far. Bone pain has been my main side effect, and fatigue.

    Do you have good support? How old are your kids? There's a few of us on here with young ones. Its not easy but one day at a time.

    Frozentoes, I always got up to pee too, still do lol. But yes, that's when the tears come. I always find The Fear is worse at night too. I've a history of anxiety and had pretty bad PND after my little girls birth last year. I'm trying to stay ahead of it during this but the nights are hard.

    Anyone else suffering insomnia?

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    PK...I will be starting weekly Taxol on Thursday...3 weeks on; 1 week off...for approximately six months. My onco informed me about the possible neuropathy. Not looking forward to this side effect. I take B12 on a daily basis...maybe, it will help. I will keep walking in mind. While it's too cold for me to walk outside this time of year, I do have a lot of Leslie Sansone walking DVD's. I will be digging those out! Thanks for the info.

    Stage2...I have nights when I just can't sleep. My onco prescribed a small dose of Ativan (0.5 mg) to take on those nights. I don't have to take it every night, but it really does help when I'm having those difficult nights. I will take one about an hour before I go to bed and I will sleep a solid six hours and wake up refreshed. No "hangover" feeling like with some meds. Like I said, I just take it if I go a couple nights in a row being restless all night. Then, I will take it for a couple nights in a row and it seems to get me back in the habit of a good night of sleep for several days. I'm a very anxious person, as well...so, this helps a lot.

    My heart aches for those of you with "little ones" to care for during this difficult time. I'm fortunate that my kids are grown -- and my youngest grandchild is 14. Hugs to all of you...you are all amazing!

    Hope

  • Meowmmy65
    Meowmmy65 Member Posts: 125
    edited November 2017

    Waiting for my chemotherapy schedule... should start next week, or the week after Thanksgiving.

    Completed two surgeries for my lumpectomy. First time, the margins were not clear. Fortunately, my lymph nodes are good, but I have quite a swollen lump in my armpit from the lymph node dissection. It would be okay with me if that went away! Happy

    Got my port during the initial lumpectomy, November 2. I wonder if I will ever get used to it! I'm aware of it all the time, and being HER2 positive, I will have it for a year.

    I'm ready to get started! The sooner we start - the sooner it is over.

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Meow....I've had two ports... I don't even know they're there. You will get used to it and be glad to have it for your infusions. My first port was in for 5 years (my choice). Then, I developed a blood clot and had to have it removed. I've had a new port since July.

    Hope

  • orangedaisy
    orangedaisy Member Posts: 129
    edited November 2017

    Bone pain got really bad after lunch today. Hips, lower spine, back of thighs. Sat on a heating pad and took ibuprofen, but it didn’t help.Called Onc and they said it’s too far past the Neulasta shot (Thursday) for it to be causing it. Taxotere also causes bone pain, and I took my last steroid pill last night, so they suspect that is the cause. Told me to take one steroid pill per day until I see them on Wednesday and take Ibuprofen as needed. I’m feeling much better.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    Hope , I also takeB6 for neuropathy and I icemy hands and feet while I'm doing taxol infusion. It really help I hope you consider that.

    Orange, did you try to take Claritin for bone pains?



  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Paulette...Is your B6 OTC or a prescription. I take B12 - 1,000 mg. a day OTC. Not sure it's doing any good as my BC is in my bone marrow.

    Hope

  • Corduroy
    Corduroy Member Posts: 4
    edited November 2017

    Got my first AC infusion yesterday, after being delayed because I had walking pneumonia, talk about adding insult to injury. My doc likes people to try without a port first, but they had to stick me twice to get the IV in, and since I'm doing 4xAC and then 12 weekly taxols, the chemo nurse was like "you really should just get a port. If they had to stick you twice on the first day, it's not going to get any better." She said delivering the AC via port is also safer because it's such a toxic drug.

    The scary thing was that I had an allergic reaction to the IV Emend drug. The MO's NP said "oh this rarely hardly ever happens, almost never, I don't know why I'm bringing it up" and then it happened. It was actually pretty scary. It went from "I am feeling weird" to "I am seeing stars" and the nurse asking me if I was having trouble breathing, and I thought about it, and yes, I was having trouble breathing, Swollen lips, flushed face, they stopped the Emend immediately and then pumped me full of benadryl and steroids. I felt a little loopy- slurring words etc. even after it was all done. I sucked on ice chips the whole time hoping this might prevent mouth sores.

    So far today, so good. I have to take the Emend in pill format today and tomorrow, but I haven't really been nauseated at all. I have been taking my anti-nauseas as directed, making sure I am keeping ahead of it, though. But I have eaten, I don't have a problem drinking, etc. I am not working today (I work part-time) but I feel like I could go. I have to go back in today for the Neulasta - they are trying to confirm that my insurance will pay for the auto-inject thing, but until they do, this time I have to go in and get the shot, which is a bit of a hassle but whatever.

    I pick up my wig on Thursday. I told my students that I was starting chemo b/c I had to cancel office hours (I teach undergrads) and they have been so supportive. A lot of them have had BC in their families, so are sympathetic. I am planning on buzzing my hair over T'giving weekend and going in with the wig on the Wednesday afterwards. Not looking forward to that, but what can I do? I am getting a super amazing wig, so at least that will look good.

    I should go for a walk but haven't managed it yet. Don't feel super fatigued today, although I was up every 2 hours to pee. Good to flush it all out of my bladder, though! The NP said that tye Cytotoxan will irrtate your bladder if you don't go pee a lot, so I need to keep hydrated.

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Shaneswife8 and Maggieanne - today is your first chemo - let us know how it went - thinking of you! Hope alls well so far

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    First chemo is done. I feel okay. A bit of a sinus heading and spaced out. Glad it's done and over with.

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    Shaneswife828: Glad to hear that it went well and it's over now. Keep yourself hydrated, and rest as often as you need. The first 4-5 days were foggy and exhausting for me. Hopefully things are easy on you!

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Shaneswife...What is your cocktail?? Mine will start on Thursday...Taxol only...so I've been told.

    Hope

  • beauz
    beauz Member Posts: 113
    edited November 2017

    Hi all!

    Corduroy- I have had the same chemo program as yours. I listened to my oncologist of doing chemo without a port first. I had 4 ACs on my left arm by IV. I noticed my vein hurted at the inner part of elbow of the IV arm through out ACs, even though the actual position of the needles were away from there. During my taxol treatments, I rotated the IVs between my two arms until nurses had troubles getting the needle in at taxol #5 and #6. I then asked my oncologist for a port. But it was too late for that because of 3 weeks waiting time. I ended up having a picc line put in my left arm. When the picc line was taken out, I noticed the same vein at the inner part of left elbow pops out when I straighten the arm. It feels like a piece of string of 3cm long with a lot of tension in it. It hurts. It also hurts when I swing the arm as usual while walking. Somehow, my vein seems to be shortened. I will show it to my oncologist on my next appointment. I regretted being such a good gal not wanting to stir up! I think ACs have damaged my vein. So please ask for a port to put in ASAP. All the best.

  • beauz
    beauz Member Posts: 113
    edited November 2017

    Frozentoes- you cracked me up with your genius description of late night crying sessions. I have to, otherwise I would cry a river for young moms here.

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Speaking of Frozentoes, I believe this was her first day too with chemo. Hope all went well. So many young mothers here. Having hard time keeping up with everyone.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Everyone - I got my Port in this morning - I know its a necessary evil (they had a terrible time getting in my IV for surgery) but It really hurts - I'll post a picture - Need your Opinions please.  Hope its normal swelling.  It wasn't easy - I was awake for the entire ordeal. Versed was useless.  I could really feel the surgery. 

       Meowmm65 - I see that we are on same treatment - and I'll be starting Nov 28. How is your port today?  Hope it improved.
    Did your port look like this 6 hours after surgery?    I'll be looking forward to sharing our SE's (What SE's? - ha) My MO said I won't have any.  Ok - I'll try to believe. 

        OrangeDaisy - I'll be taking Taxotere - That's alarming that they said it was NOT Neulasta. I think the general notion was bone pain was primarily from Neulasta ?? Or maybe not.  I am on daily steroids (for auto immune disease) I wonder if that will help prevent or won't help at all. I plan to take Claritin.  

        Hi Nonahope - I don't have children - Hats off to all of you who do. Amazing strong women! 
    Corduroy - Sorry your had a reaction to Emend.  I'll bet you'll Rock that wig!
        

    image

       
  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    Nonahope....4DD AC and 4DD Taxol. Had my first AC today.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    shaneswife - Hope things went well for you today - wishing minimum SE's.

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    rljess....so far I have a headache, nausea, and am exhausted. Not sure if it's from the chemo or the other stuff give. Took a compazine at 4 and will take olanzipine soon. Have been drinking a ton of fluids and trying to eat small snacks every few hours.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    hope I got my B6 OTC.

    Rlj - as I said before it looks bad to me. You must be soar, did you call your surgeon?


  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    hi rlj, did they give you antibiotics for when you get home? the redness and swelling should subside bec of antibiotics but if it doesn't go away give your doctor a call.

    and also some painkillers? i was given tylenol twice a day i think (650mg) but only took it at night so i don't wake up if there's pain.

  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    Good evening, fellow fighters! Day one went really well. I am totally in love with my care team. I don't think I'll have the same nurse for all of my infusions but if she's any indicator of the others, I'm in great hands. Using the port today for the first time was interesting. Once they were able to successfully access it, the whole process was super easy. The original nurse had a hard time finding the access point because there was still some swelling so it wasn't painless. Next time, I can use lidocaine to numb the area first. Which I will definitely be doing!

    rljess - I'm sorry your port placement did not go smoothly. When they were placing mine I could feel everything but the numbing agents they used kept the pain away. It wasn't comfortable but not painful. I told the surgeon that he might be a good surgeon but he was an awful masseuse. I used an ice pack off and on for about 4 days for the swelling. It helps with the pain too. Just be sure not to lift or push anything heavy. That includes the cart at Target! (I made that mistake) My port was placed Wednesday and by Monday I was feeling almost back to normal. Just like all of this, it takes time.

    I'm glad that my treatments are starting off with Taxol. It sounds like the AC side of things are heavier with SEs. At least I can pretend to ease myself into this. The premeds they gave me before the Taxol were benadryl, prednisone, compazine (i think, for nausea?), and pepcid. So, the benadryl ended up knocking me out for the actual Taxol drip. The grogginess lasted for quite a while. The nurse said once that wore off the prednisone could make me feel amped up a bit and so far that's true. So, sleeping tonight might be delayed.

    One thing that took me by surprise is that my sense of smell became super sensitive. I'm not sure if it's due to the benadryl and prednisone clearing up some sinus inflammation or the taxol. When I woke up from the benadryl cloud all I could smell was ramen soup and it was not pleasant. No one around me could smell it but the nurse went looking around the floor and found that someone on the other side had made some for lunch. Luckily, it didn't trigger any nausea, just an aversion to eating ramen anytime soon. I think my nutritionist wouldn't be too upset about that. :)

    Tomorrow is probably going to be when I feel lousy but that's ok. At least today was good!

    Also a note for any ladies with ports headed to their first treatments, be sure to wear low cut or v-neck shirts. It's just easier for the nurses to access your port.

  • Tallantire
    Tallantire Member Posts: 2
    edited November 2017

    Hello everyone I am starting chemo this am (EC) and just wanted to.join the group and say hello.

    Feeling ok about it although it took me some time to.make up.my mind to have it as it wasnt thought necessary originally but diagnosis changed after lumpectomy on the 8/9.

    Oncotype score 32 grade 3 sggresive, going to try cold cap so wish me luck!

    Xxx


  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    rljess....I had a bit of swelling and redness for a few days after my port was inserted. Not sure if it was as much as in your picture. I was told to take Tylenol. It was fine after a few days and now I don't even know it's there.

    Frozentoes...So happy your first infusion went so well. I will start Taxol tomorrow. That will be the only chemo drug for my treatment. I'm hoping the side effects are minimal. I have Claritin waiting for me and an appointment next Tuesday to be fitted for a wig.
    Good advice about what to wear when you have a port. I always wear a V-neck top.

    Tallantire...Wishing you the best with your treatment. Keep us posted. I'm interested in hearing about the cold cap. I've just resigned myself that I'm going to lose my hair. Have lots of scarves, hats and wigs to cover my bald head.

    Hope

  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    Tallantire, welcome! Just wanted to wish you luck with your treatment today. These choices we make are not the easiest but it's best to take your time and really think them out. And good luck with the cold cap. Let us know how it turns out. Drink lots of water!

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Morning All!
    My port site is the same/ no worse/ No temp/ no hear/ I'm suppose to take a shower today and remove the bandages./ rough night sleeping on my back (like when I had my bmx) But its all worth having a port.  Gotta do what a girl has to do- right? 

    Hi Tallantire.  Yes, things change all the time - different regiments, different SE's.  I had my 2 nodes sent to path during my bmx, and found 1 to be cancer - so they took a total of 7. That changed things. And during surgery they finally found I was HER2+ - that really changed things.   Best of luck!

    Frozentoes - I am very sensitive to smells - perfumes, incense, certain spices, I was hoping the chemo treatment room would be a fragrance free zone - but my booklets do not say a word about not bringing in things like that. (Brings on migraines) I had just finished my New Den, and wanted so desperately to find furniture and get it set up properly before chemo started, but went into the furniture store and the salesclerk had on such strong perfume I had to leave.  Instint Migraine. I might try putting menthalatum in my nose and wear a mask.   - 

    Thx Nonahope - I'm sure it will be all worth it -Re- port. / MKN86 - yes, they gave me antibiotics during surgery, but non afterwords.  but I have no temp, so I'm not going to worry about it. 

    Shaneswife - did you eat before you went to chemo ? did you eat During Chemo? 

    Hope every one is getting thru the day. - Its almosts 1:00pm  and as long as I lay on the couch propped up -the port site is only stinging a little.  that's a good thing. :) 


  • July2017
    July2017 Member Posts: 1
    edited November 2017

    I’m starting my chemo next week AC-T would like to be in touch with others doing same....support and experience together!

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi July2017.  I don't have the same regiment as you - but I agree- lets put our experiences out there - the good, the bad and the ugly and give support.  I just had my port put in -posted a picture - Its ugly. curious if anybody else looked like that. 

    I am terrified of Chemo.  I live alone and have little support.  (My dog Truman can't drive me to appointments)  I had surgery - BMX in August, and choose to go 'flat'.   On one of the post someone said they feel like a Model,  I can relate to that - I don't LOOK like a model, but I can now where cute little t-shirts and with my cropped hair, and it feels so good not to wear a bra, and having the weight of my drooping breasts hurt my upper back and the bra bother my shingle neuropothy.  That's the ok part.  Pumping poison into my body is a different story.  Not knowing what kind of SE's we will each have.  EVERYONE is different.  

    Did you look up past posts on other sites?  (Chemo in Aug/Sept/Oct) might give you a good insite on what's to come.  I'm trying to separate what I really need, to what is suggested.  There is a site on what to buy... A person could go broke ! 

    July2017 - If you have time, and don't mind sharing your dx and treatments - you might want to post (under Profile I think - then you will need to make it public ) but only if you are comfortable with it. No big deal.   Take care everyone. 

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited November 2017

    July2017-- I went thru AC 4 dose dense cycles followed by 12 weeks on Taxol. Ended chemo on 8-16-17. If you have any questions, feel free to ask or read the posts in April 2017 Chemo thread.

    AC will more likely bring queasiness and nausea where Taxol is more drying and could present with joint/bone pain

    It is important to drink a lot of water the day of infusion to flush the chemo out of your bladder. With AC, chew on ice while being given the Adriamycin to avoid mouth sores. And while on AC be sure to take any anti nausea meds as prescribed by MO. Don't wait to feel nauseous to start unless that is how your MO doses the anti nausea meds. I found I needed to take my anti nausea meds starting as soon as home from chemo continuing thru the next 3-4 days. ALS recommend keeps no food in your stomach for a few days as that helps s with nausea. I had to eat something (even if it was just a small bowl of soup) every 3-4 hours the first few days after chemo. After the first few down days from AC, you will start to recover and feel normal thru to your next infusion. I also found warm ginger or peppermint tea helped calm a queasy tummy as did wearing Sea Bands.

    Taxol is completely different. Taxol is a drying chemo. Your skin, sinuses, mouth will dry out. Ocean saline nasal spray helps keep noise more moist and when your nose gets really dry, Ayr Gel applied to a qtip and then gently rubbed inside each nostril helps a lot.

    With Taxol, you won't need to chew ice during treatment but you may want to ice hands and feet during Taxol to help ward off the damage from Taxol.

    With Taxol, I had a few mouth sores (no fun). Rinsing my mouth with water/baking soda/salt mixture helped a lot.

    Taxol may or may not cause bone/joint pain. My MO had me take Aleve when I had bone pain. My bone pain happened 3 days after infusions

    The pre-meds with Taxol included a steroid that made it nearly impossible to sleep the night of infusion. Just be prepared. We called it riding the pre-meds because you felt pretty good, just not tired.

    Each side effect usually has a method to reduce or lessen the effects, just tell your MO.

    While I was happy to be finished with chemo, it was doable to get thru. You will get thru it, too ... and post your questions and experiences here. The women on these boards are awesome. You are not alone