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Starting Chemo in August 2020

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  • nicolerod
    nicolerod Member Posts: 2,877
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    Isn't neuropathy pain..like pins and needles etc? I am on Erubulin/Halaven...I just am completing my 6th cycle. Lately I feel like sometimes my one leg gives out...?? I don't know if its just that my legs are weakened because I have not worked out in over a year and now they tire easy ...like yesterday I had to do a lot of shopping and cleaning and cooking and I was on my feet for a long time...my legs did feel tired and it happened like twice during the day...I am getting scared that its mets in the brain. (I do not have HER2+ ...I am ER+ HER2-) I just had a PET scan and also MRI of abdomen and I have mets at C7 but nothing in Tspine or Lspine....I do have mets in Sacrum...on the left (always have) but its not always the left leg that gives out actually its the right....its does not happen everyday either only happened a few times... but I read someone say that could happen from neuropathy but I have not pain in feet or anything? Any ideas?

  • zucchini
    zucchini Member Posts: 6
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    Thanks Denise, it's definitely been a challenge with chemo and taking care of my young ones. But some unexpected bright moments, too.


    Nicole, I wish I had any better ideas than encouraging you to call your care team. It seems odd that there's no pain but that could point to the nerves not functioning properly. Does it usually happen when you've been up more often or more randomly? I hope you can get relief and worries cleared.

  • juju-mar
    juju-mar Member Posts: 200
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    hi ladies, a quick question about hair loss. I started chemo at the end of October. Done with 2 treatments of AC so far. My hair has fallen out. I cut it very close to the scalp, think military buzz cut. Did you find it easier to shave it off completely? Will it continue to fall out, so that I go bald? I wear a sleep cap at night and it sometimes feels prickly and is slightly uncomfortable. Looking for suggestions/tips/tricks. Thank you! Juli

  • nicolerod
    nicolerod Member Posts: 2,877
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    Hi ladies...

    I asked MO yesterday if we can reduce chemo from 2 weeks on 1 off to 2 weeks on 2 weeks off...I am having a bit of fatigue and chemo can be cumlative so yea...Also I am having some muscle weakness at times in the legs not often...but they get fatigued...and I am now hearing that can be a side effect of my chemo its not a common one ...but is and can be one. >>however I forgot to tell her that at the appt. yesterday so I messaged it to her this morning...

  • brittonkb
    brittonkb Member Posts: 81
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    I did the same thing with the buzz cut and then ended up shaving it too probably about a week later. I was finding too many stubbles in my bathroom, hats, sleep caps, etc. They will continue to fall out. I never did go 100% bald though - just some stubbly areas around the bottom mostly near my neck. Now after 8 rounds of Taxol (4 more to go) I have quite a bit of peach fuzz growing.

  • juju-mar
    juju-mar Member Posts: 200
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    brittonkb, thank you. Nice to know peach fuzz can grow while doing Taxol! I will be on that for 12 weeks January thru March.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Nicolerod, I have similar S/E including awful fatigue and weak legs and generally just weak. My MO suggested lowering the dosage before the last cycle and then we cancelled day one of this cycle which would've been Wednesday. I had a CT on Friday from top of my head to mid

  • nicolerod
    nicolerod Member Posts: 2,877
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    Mariane I hope you have great results on your CT!! Keep us posted.

  • positivelyhalffull
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    Marian - Thank you for sharing the wedding pic! I love the 20's theme so much and am glad that you were well enough to enjoy it. I hope that your CT results come back good.

    Nicole - Prayers they can discover the reason for your legs giving out, hopefully just you trying to do too much at this busy time of year.

    Zucchini - I love your idea of a glow stick hunt for Halloween, my kids always loved them! I'm glad you were able to give them a fun day and can't imagine how much more difficult all of this is for you with young children. I see that you were hospitalized and hope you're doing better.

  • positivelyhalffull
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    I have my 6th of 6 TCHP infusions today. I had a breast MRI that shows the tumor has been completely eliminated by the chemo. Why can't I shake this feeling that it has spread to my hip every little ache I have? I'm normally a very optimistic person, but I can't stop thinking of my Mom and how her cancer progressed. I've had a rough month mentally just as I'm getting such fantastic news from the doctors.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Positively, I have had similar thoughts although I do not have a background as you do with your mother so that makes it even more difficult for you. My CT results showed stability in several places as well as a few notes perhaps resolved. I kind of wondered if that would happen along with any other scenarios possible. I have to say I was surprised by the somewhat positive news as it would've been easier in a way for me to make decisions. Nevertheless I quit chemo this week and had thought through doing it anyway no matter what the news. It just seemed that how I feel weighs over me. I had discussed the chemo with everyone in my family as well as a best friend and then the oncologist. Everyone said it was a decision that I had to make and so I made it. I have been down since then but was very stressed prior so I'm not surprised. But I hope for is quality over quantity and to feel stronger. I am going to take tamoxifen as it seems the right thing to do. I will start that tomorrow. The one thing that showed in the CT was some thing in the posterior of my brain but I suspect it is not a big deal. I think she mentioned AVM and I will be having an MRI in the next two weeks. Who knows? I do know that I am so weak that I could not even finish a short walk two days ago and I am losing weight.

    Marian

  • nicolerod
    nicolerod Member Posts: 2,877
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    Mariane...am I reading you post correctly... you quit taking Halaven(chemo) even though everything has shrunk on it, bc your side effects are bad? Is that correct?

    What were your side effects that were so bad??


  • d37
    d37 Member Posts: 73
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    Mariane, I read your post a few days ago and have been thinking of you having to make this overwhelming decision. I was trying to think of exactly what to say, please know that my heart goes out to you and I hope you have a long long time full of days where you feel good and are able to do the things you love.

  • positivelyhalffull
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    Marian - I'm so sorry for what you're going through. That's an impossible choice to have to make. My thoughts and prayers are with you for peace in your decision and a genuinely good quality of life off of chemo.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Nicole, yes despite the stable etc. my QOL was/is not great. I am 71, have been on too many chemos plus I have an embedded pain pump plus oral pain meds too, my right hand and arm have no use at all and my mobility is bad too due to the opioids and not much exercise. So it is not just cancer but also debilitating pain from my brachial plexus tumours which caused the arm and hand problems. Neuropathy is both sides hands and feet and fatigue is also bad. I will still be able to go back on Eribulin. We will see but right now I want to see if I can feel better.

    Marian

  • nicolerod
    nicolerod Member Posts: 2,877
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    Marian I understand... I would probably do the exact same think if I were you. You mentioned you are 70 wow you look great. I would give anything to make it to your age. :). I hope you start to feel better soon keep us posted!

  • Dubhain
    Dubhain Member Posts: 17
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    brittonkb - I've got the peach fuzz, too. Got 2 more taxel treatments left. A coworker said that in order for actual hair regrowth to begin I would need to shave off the wispy hairs. Do you know if there is any truth to it?

  • brittonkb
    brittonkb Member Posts: 81
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    I've never heard that but nothing would surprise me. Mine has definitely continued to grow in thicker ... relatively speaking - my 13 year old daughter would probably not agree with that statement :)

  • brittonkb
    brittonkb Member Posts: 81
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    Marian - So sorry you've been faced with such tough decisions. I can't imagine how hard that must have been. I hope you're feeling better.

  • Dubhain
    Dubhain Member Posts: 17
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    Bittonkb, here I'd what I found about the hir regrowth. Massage the scalp with head upside down 5 minutes a day for 7 days. Then wait 3 weeks and do it again. It's also recommended to use a natural oil such as olive, coconut, or almond, taking any allergies into consideration. Also, a healthy, high protein diet will encourage hair growth.


  • elderberry
    elderberry Member Posts: 1,065
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    mariane: I read your last post a few days ago but I could not find the words to express my thoughts. I am so sorry that you are having such difficulties and I understand your desire to make hard choices and choose quality over quantity. I hope that the decision will give you both peace of mind and improved physical comfort. Keep us posted on the MRI.


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Another big change. From my MRI brain last week it turns out that I have 2 Brain Mets, one posterior fossa and second front temporal lobe and leptomeningeal disease.

  • positivelyhalffull
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    Marian - I'm so sorry. I looked up Leptomeningeal disease and my heart breaks for you, for what you're going through. I hope you're able to find comfort with friends and family this holiday season. Damn covid and damn cancer!

  • nicolerod
    nicolerod Member Posts: 2,877
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    Marian....I am so sorry!!! did you have symptoms with the brain met? Marian..I don't see in your signature..but what type of BC do you have?

  • d37
    d37 Member Posts: 73
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    Marianne, I’m so sorry. I hope you are surrounded by friends and family during this holiday season. I am thinking of you. Denis

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    crazy lives eh? 🥰 too

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    I had been dreading surgery so much. Surgery was when they had discovered that my mom's cancer had spread throughout her body. I had my lumpectomy with sentinel node biopsy yesterday by myself since my husband couldn't come in due to covid restrictions. But...the surgery took 1 1/2 instead of the planned 3 1/2 hours and 0/3 lymph nodes were positive for cancer. Praise God and Happy New Year! I hope this year the good outweighs the bad for all of us.