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Starting Chemo September 2019

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  • LMS458412
    LMS458412 Member Posts: 288

    I was given some Ativan when I wasn't sleeping well at one point. Then I ran out, but my sleep got better, too. Then, I started getting anxious again, so I got some Xanax. Luckily, I've only had to take a few of those.

    I'm the type of person who hates to take any kind of medication, even an Advil for a headache, so it was a big deal for me to ask for help. I'm so glad I did. Lack of sleep was really affecting me badly. The medication really got me over the worst of it.

    And, as Tracy said, the anxiety of what COULD happen was much worse than the treatment or the side effects, at least for me, so far. The actual infusion was uneventful. Now, five days later, I don't feel great, but I'm doing way better than I thought I would.

  • ACchaos
    ACchaos Member Posts: 42

    Hi, folks, joining here as I found out today I'll start four biweekly doses of AC followed by four biweekly (or twelve weekly) doses of T. I knew I'd have chemo, but somehow 'three to five rounds' has turned into this plan. And I don't even have my drains from BMX out yet, so this if feeling very much like insult to injury.

    Rapidly scheduling MUGA scan and port placement, chemo 'teach' class and finding it all a bit too much info. And that what info I had doesn't apply because I'm TN. So...reading this forum and trying to get my brain into the right place.

  • snaffle53
    snaffle53 Member Posts: 107

    My Gastroenterologist wants me to rely on Miralax. The dose is adjustable depending on results. So, that’s what I’m going to use.

    Tomorrow is treatment day. I know the infusion itself won’t be that bad. The trick will be finding that fine balance between too much Miralax and loss of control, and not enough and I get constipated again. Though, I’m completely changing what I’m eating this go around.Vegetables, fruit, and more vegetables with very little meat on the side. I just hope I’ve got this figured out.

  • tmh0921
    tmh0921 Member Posts: 518

    ACchaos

    Welcome to our group, sorry you have to join us though :(

    You can do this. I’m a week out from my first dose of TC and it hasn’t been as bad as I thought it would be. It’s not a walk in the park, but doable.

    Tracy

  • tmh0921
    tmh0921 Member Posts: 518

    Snaffle

    Fingers crossed that this round is easier on your bowels and you find that balance.

    Tracy

  • angieb92
    angieb92 Member Posts: 291

    Gamb - My oncologist told me to leave Dr. Google - he was my doctor now! This site has such variety of people going through different treatments and with different diagnoses. It’s been the biggest help of all

  • tmh0921
    tmh0921 Member Posts: 518

    when I was Dx the first time, Dr Google had me convinced I’d die within a year. I’m almost 20 years out, and nowhere near death’s door.

    My oncologist told me to stick to specific sites for research. Interestingly enough, this site was high on her list of recommendations

  • LMS458412
    LMS458412 Member Posts: 288

    Welcome ACchaos. We'll get through this together!!

    Good luck tomorrow, Snaffle.

  • Gamb
    Gamb Member Posts: 570

    ACchaos that is the same chemo I will be on, I think the 12 weeks of taxol is the one I prefer,,not sure tho

  • Gamb
    Gamb Member Posts: 570

    I am so glad i found this site, it was just meant to be, I was at my wits end, I've learned a lot and felt more at ease today that I have since d's


  • tmh0921
    tmh0921 Member Posts: 518

    Gamb

    I’ve found that the only people who really get it and can relate are others going through it (or who have been through it). It helps to know we aren’t alone.

    ((Hugs))

  • santabarbarian
    santabarbarian Member Posts: 2,308

    gamb, I too had TNBC, diagnosed stage 2B (3C current staging). I want you to know I had a complete Pathological response from chemo. My cancer was totally defeated... when they went in for surgery it was all dead. WHOOO! Many have kicked TNBC ass on this forum -- you will be joining a large group of us! So, hit it hard with your chemo! TNBC is a scary beast but it tends to respond better to chemo than most other cancers. And if it goes away, the odds are very good of it being gone forever. I will be rooting for you!!

    re google, I disagree. I say, Google like a MF!! There is a LOT of stuff you can do to support yourself and much of it I found out about on Google. But the key is to know to sort for recent dates (my mom was sending me articles from 2008...), and know the difference between a peer reviewed study from the NIH vs. a clickbait puff piece. For example, I googled my way to finding out that metformin is a good anti-BC-metastases drug, particularly good against TNBC. So I asked my MO for it, and got it prescribed. Had I not asked I doubt it would have been forthcoming.


  • angieb92
    angieb92 Member Posts: 291

    santabarbarian - I have ventured on the TNBC forum just to understand what each diagnosis is like and you ladies kick ass!! I am amazed by the sisters I’ve found on here. If they can do it - do can I

  • Gamb
    Gamb Member Posts: 570

    Thank you so much santabar, this really is great news to me, tnbc has me really worried


  • santabarbarian
    santabarbarian Member Posts: 2,308

    Jump into "Calling All TNs" any time. We're here for you.

    Another thing I found out about while Googling.... HEAT. Aka "hyperthermia."

    Tumor cells die at a relatively low heat compared to healthy cells. If you heat cancer cells to about 108-9 for about an hour, they will become severely disordered or die. Healthy cells are ok to 111+ and will recover. The cancer cells will also give off "heat shock protein" which makes them more identifiable to the immune system. I had a tumor that was easy to feel and a huge lymph node also easy to feel. I also *adore* a 105 degree hot tub so had a sense of what 108-109 might feel like. I used a very hot hot water bottle and refreshed the heat frequently. I got light burns in the area (magenta skin, that took some weeks to come back to normal). I did it 3-4 x per week during chemo, and during the drip I also had heat on the area (to bring chemo laced blood to the area). I am sure heat was a help to me. I read on Google that vets use heat to shrink animal tumors prior to operating, and they use recirculating hot water externally. I thought "hey, I can do that."

  • tmh0921
    tmh0921 Member Posts: 518

    I'm on day 8 of TC #1

    I still have a little fatigue but I feel 85% normal. The alternating of Claritin and Zyrtec has solved my Neulasta aches, so I'm happy with that.

    Now, if someone could just tell my tastebuds to get with the program that would be great. I'd like to taste again 😊

    Gamb - good luck with your first treatment tomorrow, check in with us if you feel up to it


    Tracy

  • Gamb
    Gamb Member Posts: 570

    Hey all, are there any good supplements and or vitamins that you are taking?

  • Gamb
    Gamb Member Posts: 570

    Thank you tmh, getting a little nervous and anxious for tomorrow. Pray God gives me comfort

  • santabarbarian
    santabarbarian Member Posts: 2,308

    I strongly recommed the book "Life Over Cancer" by a MO - Dr Keith block - who is VERY ecperienced with using supplements and vitamins as part of cancer treatment alongside chemo. Most MOs do not know much about these things. Dr Block does. I had a consult w him. I think he walks on water.

  • santabarbarian
    santabarbarian Member Posts: 2,308

    Every cancer is different specifically and all of us have other health issues or underlying conditions that are unique to consider so I am always reluctant to be very specific about the dosages etc. A knowledgeable guide is so important since we are all unique cases. Something I take for my TNBC that's wrong for your ER+ cancer, or your TNBC, even. Or your diverticulitis, etc. I found a naturopathic physician in my town and her advice jibed w Dr Block's. An experienced naturopathic physician who has worked w many cancer patients is a great way to go.

    My specific story is on the TNBC forum in Member's Stories if you want to know what I did. I did a TON of research and everything I used had to (a) do no harm and (b) have a decent probability of being beneficial in my case.

  • LMS458412
    LMS458412 Member Posts: 288

    Day 7 of TC #1

    I'm still feeling tired, but I'm getting a few things done and still have energy to walk on the treadmill.

    I had some diarrhea this morning, but an Immodium took care of it. My appetite came back full force yesterday and some things taste awesome and others are bland. I'm craving protein and veggies, so that's good.

    I am still having some bone pain from the Neulasta, but it's getting less each day. I'm going in tomorrow for a blood test, so I'll ask about alternating Claritin and Zyrtec from now on.

    If I can get the digestive issues under better control for the next 3 treatments, as well as the bone pain, I will be very happy.

  • Gamb
    Gamb Member Posts: 570

    Glad you are feeling some better, you go champ!! I will start Taxol after my a.c., either 4 dense dose or 12 weekly ones, I'm thinking the 12 weekly ones, I read it makes a difference in se

  • kv99
    kv99 Member Posts: 11

    Hi all, I’m new here with IDC in my right breast and will be starting my neoadjuvent chemo on 9/23. It looks like I will be on Juniebird’s exact regimen, including cold caps! I still have sentinel node biopsy and an MRI biopsy of my left breast to do over the next several days. I’ll pull together my signature/dx when I get those results. Good luck to everyone




  • Gamb
    Gamb Member Posts: 570

    Hi KV, I hope it all goes well with you I am still kinda wondering myself at wtf happened, still feels unreal

  • Gamb
    Gamb Member Posts: 570

    Does any one know if genetic mutations affect treatments?


  • tmh0921
    tmh0921 Member Posts: 518

    welcome KV99, I’ve added you to our list!

    We’re glad to have you, and we’re here for you

    Tracy

  • tmh0921
    tmh0921 Member Posts: 518

    Gamb

    I’m assuming you are referring to genetic testing in general and not the tumor specific testing (like Oncotype).

    From what I understand, genetic mutations impact treatment decisions with regards to ongoing monitoring for cancers related to your mutation(s), and what types of surgery they may recommend (such as ovary removal, etc.). I have not seen any research where it changed chemo recommendations.

    Tracy

  • ik0106
    ik0106 Member Posts: 16

    Hello everyone. I will be starting weekly Taxol (along with every 2 weeks of Herceptin and Perjeta) on September 27th. I will be cold capping using Penguin and a professional capper. Having to have chemo came as a shock to me as my tumor was small (7mm), stage 1. The testing on my original biopsy came back as HER2 negative but the pathology on my surgery (DMX) came back as HER2 negative so thats why I am here.

  • tmh0921
    tmh0921 Member Posts: 518

    welcome ik0106

    Sorry to hear you had a surprise on your pathology that landed you here, but welcome to our group

  • Turkeypoult
    Turkeypoult Member Posts: 27

    Started TCHP on 9/9. Just a long sleepy day, 8:30-3:30, due to Benadryl. That evening my toes and feet hurt a little, relieved by cool water-soaked towel wrap for 30 min. Day 2: a little face flushing but euphoric energy. Nurse said this was due to steroids. Day 3: the honeymoon seems to have ended. Some diarrhea started but controlled all day with Imodium; achy but not in one spot for long. Sensations move around from one spot to another. A little tired.

    I am happy to have been able to use elliptical some and get tasks completed around the house.

    A funny note: I started to make a separate dinner for my husband. Packaged red beans and rice. As predicted, the smell started to get to me. (I have had no nausea, yet.) So, I put a dab of Vick's Vaporub under my nose. Did the trick!😋

    More news as it happens