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Starting Chemo in August 2020

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  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Denise, welcome here and I hope your trio of chemo treatments get to work quickly on you liver. I have had Taxol (Paclitaxol) twice and found it to be manageable despite the hair loss.

    This will actually my third hair loss which maybe is making it harder this time. Like Elderberry I found my wig heavy and hot and also liked scarves but now one handed they are out. I was happy with different caps and hats.

    Mel how are you making out? Any change at all in the swallowing and pain?

    Marian

  • elderberry
    elderberry Member Posts: 1,065
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    marian: I think the website is "Headcovers Unlimited" and they sell pre-tied scarves. You just pull them on like a cap. I bought my square cotton scarves from them, folded them in a triangle, brought the ends behind my neck then twisted it at the front. It does require two hands.



  • brittonkb
    brittonkb Member Posts: 81
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    I hope everyone is having a nice weekend! I'm enjoying our beautiful weather today before infusion #3 tomorrow. Praying SEs continue to stay manageable.

    I need to check out these scarves. I typically wear just a fitted ball cap but would like some additional options. I really don't like the way I look in the cotton caps. I did get a wig which is pretty nice but I don't care to wear it very often. I usually only wear it when going places with my 13-yr old daughter. She prefers it, and since I have no idea what it's like to be a 13-yr old girl dealing with her mom's breast cancer I don't push the issue with her.

    I hope everyone has a healthy, happy week!

  • d37
    d37 Member Posts: 73
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    Thank you for the warm welcomes. I read through this thread and I admire the strength and resilience that is so evident in the posts. When I first heard that I had liver mets I was a mess. I’m in a better place now and I’m glad I found this forum! BTW enough hairs are holding on so no wigs or scarves yet. The rest of my hair on my body is falling out too except for my eyebrows and eyelashes. I hope I get to keep them. Did anyone lose their hair but kept their eyelashes and eyebrows? It seems that women prefer hats and scarves to wigs. I feel like my hair is so connected to my identity. That sounds so vain and trivial. I think maybe it’s easier for me to focus on something that is trivial. I hope everyone is having a good day. It’s a beautiful sunny day in New Hampshire.

    Denise

  • nicolerod
    nicolerod Member Posts: 2,877
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    Mariane...are you getting chemo this Thursday? start of 2nd cycle? If so I am not...I switched to Mondays so I won't be going until Sept 7th. Let me know how it goes...so far so good here on 1 and 1/2 cycles.


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Nicole my day eight is Wednesday. That will be the end of cycle one and the next cycle will start on Wednesday, September 16 so I guess mine will always be Wednesdays and unless lab work says no or whatever.

    I've ordered from head scarves unlimited twice before. The last time I was not too impressed. I have found a wig store which sells some nice caps. I am still really hoping it will be thinning rater than falling out. D37 sorry but I have never cut my eyebrows or eyelashes although both did grow back. The rest of my body hair has come back here and there but quite sparsely.

    Tomorrow at 0800 I am having what is called a supraclavicular or infraclavicular phenol neurolysis. This will be ultrasound guided and with an anaesthetic. It is a trial with anaesthetic to see if it decreases or stops the pain for a short time. The next step at some point would be to inject phenol which would leave me with a floppy arm so it's not something I will be taking lightly or making a decision soon.

    Marian



  • Duct20
    Duct20 Member Posts: 6
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    Hello I guess I am September! I am a new breast cancer diagnosis. I start Chemo on 9/3/20, I get my port put in on 9/2. Meanwhile I am getting a body scan tomorrow 9/1/20. I have Stage2 Her+ I found out on 8/19/20. I am staying as positive as I can in this situation.  

  • moderators
    moderators Posts: 8,185
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    Welcome, Duct20! We're so sorry you find yourself here, but we hope you find this to be a supportive place. Best of luck on your scan and port placement, we're all here for you!

    The Mods

  • melmcbee
    melmcbee Member Posts: 371
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    Sorry ladies I havent been back I have just felt real bad but today I feel a little better. I will do my 3rd Abraxane Wednesday and then next week is chemo break. Yay. About the radiation. I started noticing pain and thrush about 5 days after 1st rad treatment and supposedly it should heal between 2-8 weeks after kast treatment. I ate half a plate of food for supper which is the most food that I have ate in total for 3 weeks. Throat still hurts but not as bad and still have painful and difficulty swallowing but at least I feel like Im on the mend. Hope all of you are well. Welcome D37 and Duck20. Healing hug

  • nicolerod
    nicolerod Member Posts: 2,877
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    Thanks for the info Mel.

    Mariane...ok gotcha so I am 1/2 cycle ahead of you. I am finally getting use to my head being shaved. I got a nice wig but need another longer one for my sons wedding in Oct.

    Good luck with that procedure!

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Sorry today was not the phenol, it was bipuvicaine anesthetic as a test to see if it would help my pain. It did work and lowered the pain in my arm but hand still tingling. My doctor called to check on me and was happy to hear my news and said the hand tingling was expected still. We have decided to go with the phenol after my PET/CT results to have a better idea of the progressions.

    Marian

  • Duct20
    Duct20 Member Posts: 6
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    Thank you 😊

  • Notgivingup
    Notgivingup Member Posts: 143
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    Good Evening All,

    On Thursday I had my second dose of Abraxane. That night I started getting chills and had a fever of 101.4, so of to the er. I was admitted and they have been giving me broad spectrum antibiotics while they wait for the cultures. I believe my fever finally broke as of this morning which is good. Hopefully they will have some answers in the next couple of days.
  • deniseml
    deniseml Member Posts: 68
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    hi ladies. Had 1st chemo on 8/25 TCH & P. Just started feeling like myself. Most SE manageable, but, the oral inflammation & sores still an issue. How can I prevent this from happening again. Diagnosed 8/3. 6 TCH&P regimens every 3 weeks planned followed by surgery . HER2+, grade 3, stage III.

  • brittonkb
    brittonkb Member Posts: 81
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    Hope everyone is having a nice weekend.

    Notgivingup - SO sorry to hear you're in the hospital but glad your fever broke. Hope you get some answers soon and can head home.

    Welcome Duct! I hope your scans and chemo went better than expected this week.

    Denise - My MO suggested I rinse with salt water 4x/day. On top of that I rinse with Biotene 2x/day. Not sure if you're already doing this but may be worth a try.

    I had my 3rd of 4 AC treatments on Monday of this past week. I tried to stay ahead of bone pain from the Neulasta but still had it for a day or two. Otherwise I've just noticed that the fatigue must be cumulative. I definitely tire out much easier than normal. I'll have my 4th dose on 9/14 then on 9/28 will start 12 weekly Taxol. Has anyone else done AC followed by weekly Taxol? I'm curious how things will be different on the new regimen.



  • nicolerod
    nicolerod Member Posts: 2,877
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    Notgivingup after my 1st dose of Eruibilin/halaven I had a fever of 102 went to ER took nothing and it broke on its own...didn't get it again with 2nd or 3rd infusion....its probably just a reaction to the chemo...thats what mine was.


  • Notgivingup
    Notgivingup Member Posts: 143
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    NicoleRod,

    This was the second infusion of Abraxane. The blood cultures as of yesterday, had nothing growing. We have a friend in common on these boards. I call her Rabbit. She and I went through our treatments together back in 2018/2019.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Yes, Notgivingup...I love Rabbit :) Glad your blood cultures had nothing growing...it's probably just your body reacting to the chemo. :)


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Brittonkb, I had my first Taxol, called dense dose every 2 weeks along with neupogen. It went well. Notgivingup, I hope you are home now with answers. Denise I have had mouth sores lots, never terrible and used magic mouthwash. I dislike baking soda. With this chemo I am getting small sores on my lips this time, not herpes I don't think. Fatigue is bad and heart rate goes high easily. I had my Day 8 Eribulin Wednesday. Nicole did you have your third today or last Monday?

    Marian

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Nicole how is your hair? After losing mine twice already and only just having it back, I am unhappy about the prospect of losing again. Yes I know it could be could be considered vain to worry about being bald again but it just really bugs me. My son is getting married here on Halloween and I would just love to have hair then. I feel like I actually look normal right now. I have never liked wearing a wig and at least the first time around I could put scarves on but now that I am one-handed only that is just about impossible without help. And that is my bedtime story.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Mariane...hi .... mine is confusing... so I had my 1st dose of Eruibilin/Halaven on July 27th. (Day/Cycle 1) but could not have Dose 8 because of Oral Shingles... so I had to start over (or count the one on the 27th as a half dose). So then

    07/27 Day 1 1st dose (suppose to be cycle 1 but had to stop and skip the 8th day)

    8/13 Day 1 Cycle 1

    8/20 Day 8 Cycle 1

    09/07 Day 1 Cycle 2

    09/15 Day 8 Cycle 2. (so normally I should be having this 09/14 but I won't be here so we moved to Tuesday)

    So basically I have had 1 and a half cycles so far... or 2 and 1/2....

    Hair... my hair was thinning SOOOO Much after the 2nd dose....my husband shaved it off for me. I have never lost my hair and I have to say I was in a depression for about a week...not just because of my hair being gone but bc our son is getting married Oct3rd and I wanted to look like ME for it...like the ME before Stage 4... :(. Im over it now. I got a wig and I am going to look at another one tomorrow...

  • melmcbee
    melmcbee Member Posts: 371
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    Hi ladies. Well this is my off week if abraxane/ tecentriq. I spent Monday in the doctors office trying to do a urinalysis but was in too much pain and cant empty bladder. Bad uti. Which doesnt help the Nephrostomy tube. Anyway starting antibiotics. Notgivingup did you figure out what your infection was? Did you get out of hospital? I hope you are healing. Denise I asked my doctor for that steroid cream to put on mouth ulcers its called triamcinolone and it might help you. Hope everyone is doing better and healing hugs to all.

  • nicolerod
    nicolerod Member Posts: 2,877
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    It pains me to write this....but I think my chemo is not working. You all don't know my journey but I haven't been wrong so far...My tumor markers have never worked...but I have always been able to tell from my pain in my liver...and the after the first treatment on Halaven/eruibilin my pain completely went away for 3 weeks..(which is what happened on my first treatment Ibrance/Let/faslodex) and then when my pain came back it wasn't working...so now my pain has been back for a week... My husband and I are at our sons vacation and to be here for our sons fiancee's bridal shower...I had to leave the house this morning and just get in my car and cry out to God and CRY and yell...and sob and now I am sobbing now too..The Ibrance only worked for the first 3 months and stopped at month 4 and I have never had a treatment work in the year and half since diagnosis...Its so discouraging bc I swore I wasn't gonna get Hopeful for this one to work...and I DID and now that I am pretty positive its not...it just SUCKS...I am running out of options...I feel so angry.

    ok thats enough.

    Nicole

  • Notgivingup
    Notgivingup Member Posts: 143
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    Hi All,

    I got home Sunday night. There was nothing growing in the blood cultures. So who knows what it was. I had treatment today. So far doing better than last week. I have my off week next week.

    Nicole, I don't know what to say to you other than I hope that you are wrong. I am sending you prayers and hugs.
  • elderberry
    elderberry Member Posts: 1,065
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    duct20: How did your first round of treatment go? Have you got the results of the scan? We are all here cheering you on. You are HER2+, you might want to check out that thread on the BCO board.

    Blessings

  • elderberry
    elderberry Member Posts: 1,065
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    NicoleRod: I am so sorry that everything is going sideways for you. SUCKS doesn't cover it. We all have cyber shoulders on which you may cyber cry. It is so f'ing unfair!

  • brittonkb
    brittonkb Member Posts: 81
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    Nicolerod - Hugs to you. I hope you’re able to enjoy this time with your son, but am sure this all weighs on your mind. It really does just Suck. Hope you get answers soon.

    Not giving up - Glad you are home and we’re able to get your treatment!

    I’ll have infusion #4 of AC this Monday. On the 28th will start weekly Taxol. I’m ready for the end of AC!

    Hope everyone has a wonderful weekend

  • d37
    d37 Member Posts: 73
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    Nicolerod, I’m so sorry that you are going through this. I hope and pray that the treatment starts working for you. You are in my thoughts

  • deniseml
    deniseml Member Posts: 68
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    thanks Marioneliza. 2nd round of TCHP received. Using baking soda to brush teeth, warm saltwater gargles 4 times a day. I also have the biotene rinse. no dry mouth symptoms yet, though it didn't really start until day 4. overall , I am feeling better than I did the 1st round. i'm sure being proactive in treating symptoms is helping that. Started losing hair 5 days ago which doesn't really worry me, but wish I had known about the scalp sensitivity. came home after yesterdays treatment and shaved my head. thought I would be devastated , but, it was a relief ! scalp not nearly as sensitive, still have hair, just thinning at this point. Used a #3 attachment on shaver and lint roller after to remove lose hair. So glad I read an article about this written by a hairstylist !


  • nicolerod
    nicolerod Member Posts: 2,877
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    Notgivingup, Britton and D37 thank you :)

    I had my I had my 5th infusion of Halaven yesterday. I got the Neulasta and Im feeling ok.

    My liver started feeling better......so I am wondering something.... My son and future DIL gave me a gift of a massage for my birthday while I was there visiting. I went and the lady was someone I use to (years ago) go to regularly for massage. Well she did the massage didn't go deep but she said I was really bad (tight etc) I knew I was...and she did some energy work...well it was later that night in the middle of the night I had a lot of liver pain and gassy...I did (of course) drink a ton of water but by the next afternoon I was feeling better and markably less liver pain...now I am not really having any...and my bilirubin was great yesterday 1.1 which is AMAZING for me (I have Gilberts Syndrome)... Anyway I am wondering if the massage and energy work was moving some toxins around?....

    My MO did offer to move up my scans (bc I asked her to) and they are scheduled for Oct 6th. so I have my sons wedding Oct 3rd...then chemo the 5th then scans the 6th....I see my MO next Thursday...if my liver still feels good by then I am gonna ask if she thinks I should wait till November as planned...

    Any thoughts? (I will cross post)

    Nicole