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Starting chemo June 2021

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  • mle42
    mle42 Member Posts: 124
    edited September 2021
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    Hi all. Well, I didn’t get chemo yesterday. Liver enzymes looks better, but heart enzyme (troponin) was the highest it’s been (like, if I showed up at the ER with these numbers they would assume I’m in the middle of a massive heart attack). Apparently taxol is not typically expected to affect the heart, but that seems to be what is happening in my case. My cardiologist and oncologist agreed that risk/benefit analysis is telling us that I should not get any more taxol. So….. I’m done. A very anticlimactic end to chemo, since I was all mentally ramped up to get this last dose. And I do worry what effect it will have on my probability of recurrence, to not be able tofinish treatment. But my tumor has responded really well, shrinking away to almost nothing (won’t know until surgery if there’s a little bit left or not), so I’m trying not to worry too much there. Instead I get to worry about my heart, and how much it will recover….

    hope you all are doing well, patchy leg hair aside!

  • btwnstars
    btwnstars Member Posts: 81
    edited October 2021
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    mle42 - sorry to hear about the abrupt end, but at least they are monitoring important things and hopefully it is the best decision. It's great your tumor responded and congrats on being done with chemo! yay.

    Kotch - they always asked me about my nails, I know I've read can be affected. The only thing I noticed with mine was growing less quickly and feeling more thin. I have used a clear, plant based coat on my toes, hoping to reinforce it a bit, and also bought cuticle oil, which I've only remembered to use like twice.

    I had 3/4 Taxol last Thursday with the neulesta. I seem to be ok, had a bit of a fever over weekend and getting out from the bone pain is a you-know-what for me, but finally by today I feel better. Epsom salt baths certainly help with relief. I also had way more memory effects this round, my treatment was later and I closed the place down, but I almost don't remember getting home, so not sure if it was being tired or side effect.

    I can't wait for my last and to be done, but yea its a wacky mix bag of emotions. I have an appt set up for a consult at the different radiology place next week to decide if I am going to switch to be closer to home.

  • mle42
    mle42 Member Posts: 124
    edited October 2021
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    BtwnStars, glad you’re feeling better today. Just ONE MORE to go!

    I’m now 3 weeks out from my last infusion, and feeling really good. Still can’t walk up a hill without gasping for air, and I’ve still got hot flashes keeping me awake at night, but my mental energy is back, if that makes sense. I also realized yesterday that the constant stomach/gut pain, which has been with me since starting chemo in June, is now gone! That light at the end of the tunnel is starting to shine on me. Hope it reaches all of you, too

  • kotchaj
    kotchaj Member Posts: 214
    edited October 2021
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    mle42-GLAD to hear that you are feeling better.

    And I MISS the mental energy. I actually talked to my doctor about that this week at my appointment and the "dullness" of my brain aka chemo brain. Which is in fact a very real part of my every day right now. It seems with each treatment I feel like I lose a few more brain cells. Forgetfulness in general, words in the middle of a conversation, names, basically anything that I have taken for granted.

    I am losing my left big toenail which is on the same side as my tumor in my breast. Not that it matters, but it seems that everything is happening on that side of my body. Both of my thumbnails are showing a dark purple line around the white moon at the bottom of the nail beds. I may lose those, too. The toe I can hide, not so much the thumbnails. Just annoying.

    I also think I'm at a half way slump in my chemo. Still 6 more weeks to go.

  • mle42
    mle42 Member Posts: 124
    edited October 2021
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    Kotch, losing nails doesn’t seem fair, I’m sorry you have to deal with that on top of everything else! Very thankful that I was offered dose-dense taxol, so I could get it done in 4 infusions instead of 12. My heart goes out to you ladies who are in it for the long slog.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited October 2021
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    KotchAJ and all-

    Thank you for all the posts. I have not been on this site in a few weeks. It was a blah week for many reasons. My friend Javajana got in a forum barbing about the caccine, I never say it, but in the end moderators did not side with her and she left the site. Tough to think about when your friend of 30 plus years left. I have resumed more communications now in other ways.

    For me, I am still on this journey.

    Yesterday, i had my 9th infusion of my Taxol/Carboplatin doses. I too had 2 weeks of blood tests with low numbers in one area, that almost caused a week delay. My hero?? the shot from home to boost my white blood cells. My insurance company approved it for 5 doses a week, starting one 24 hours after my last infusion. My WBC count went from 1400 2 weeks ago to 6000. My RBC count will drops a bit a week. Being at COH in Duarte helps.

    I have not felt the need to get a second opinion since I got to the COH. I was referred there by my new doctors office who i believe to be my first opinion. The PA got my mammogram, biopsy and breast ultrasound done. From there, she had a local surgeon and a referral to the COH. I chose City of Hope. At COH, they have a patient portal that shows everything. A message board where i can ask questions of every doctor and result, notes and findings on any procedure.

    Effects so far???? If i do not take my nausea pills Day 2-4 every 5-6 hours, I am guaranteed a BLAH day. At least one of those days has been crackers and soup only. Drink 1/2 my body weiith in water daily. If i do not, then the flippin stool softener pills do not work as well. Nausea pills/stool softener pills. A new part of life on this cancer treatment journey.

    Hair!!!! Ha ha. I had thought i would shave all the way, but after it was cut to the shoulders, then 3 inches all over, I just gently pulled my hair out day by day, put it in a baggy, and plan to keep it and the 1/4 length cut at the first sitting, till my hair grows back. For now, acceptance of doing that has worked. I have "grandpa/grandma in some cases, comb over. It is still falling out, but if i wear my beanies and caps, the wisps make me look like i have hair. I have a pricy curly wig i have never worn. ! month plus ago i bought it. My sister went with me to shop. We bought 2 that day. Both close to my original red color. The curly one, if any of you remember him, has me feeling like a clown from the 60's. It is the real hair one, so i know i can brush it out and have the plan to do it this weekend, for today, I am wearing what my sister says is my "Aunt July" wig. Also above the shoulder length. I wore it a could weeks ago to an event and a number of people said they love my new hair cut. To those people I did not reveal it was a wig. I did attend that event to get out of the shadows. At 6 treatments, I was half way done.

    To all of you, sharing this journey on shared experience helps. I work at a JR College where we do not have State Disability. We have to buy it. I fall under the person who meant to do it, but then the pandemic hit. I did not. Cancer hits me, yet so did working from home. My treatment plan is 12 weeks of the current, with 9 of 12 done. 4 more of another chemo every 2 weeks. 2nd week of December a pelvic ultrasound sound to see if the ovary find on the left grew in 3 months or is an old thing sitting in their dead. This will change whether i just have ovaries and fallopian tubs taken out or the who hysterectomy. BRCA-2 will head to that place. I just met a retired lawyer in her mid 50's who started out with a breast cancer and is now being treated for ovarian at Stage 3. 5 or 6 infusions occuring Monday. I have talked and met with many people. No journey is the same EXCEPT having cancer. Wrapping up, i am grateful i have Sat/Sun after my infusion, as i did get approval to continue working from home. Approved by the college so far with my banked sick time and the ADA laws of California. I do have an awful guy i work for, who through the Manager of the college for HR, Equity/Inclusion/Diversity and more, sees a week online met and daily update through a set of forms i created to be adequate to keep him informed. I must trust they stand behind me, if I do my part. As this is my pension hope at 10 years, i have 3.5 years to get there.

    ooops for the last bit. Toenails are still with me, no leg hair or pelvic area, and little on head as said. Eyebrows had thinned before, eyelashes now a bit more, but i still have them. Being a red head, unless i put makeup on them, you could rarely see them. Might be why i do not notice, On my arms, I got the "chemo rash by the 2nd week. Beautiful darker blisters on both arms, some on my face, neck and shoulders. So after a month or so they dried and flacked off. Now i see my hair is super thin. I too believe in asking the doctors and RNs i see if this is a normal reaction. Seems my ear ringer yesterday is. Today, i do not have ringing ears.

    I do a montly visit at pet stores on my good days, so now out i go. Have a great day all- Kathy- BRAC-2 Journey gal. Stage 2 BC/No lymph node-Looks to be shrinking.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited February 2022
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    A long long time since I posted. I had the chemo for 12 weeks, then 1 of 4 infusions of the red devil. I was hospitalized for dangerously low blood numbers and a fever. I was then moved to a target pill which i took daily for 27 days/ That did more damage to my blood. Early January got Covid, even though vaccinated. Mild care, mostly chest cold and fatigue. Jan 14 i had a blood transfusion as my total blood number was 5.9. From that day till today i have steadily gotten better. Sunday was tested for Covid and i am Negative!!!!!! Thank God.

    Yet, Wednesday i go in to have my left breast removed and expanders put in for a reconstruction. I pray that part goes well. Then the Gyno surgeon will remove my ovaries and fallopian tubes. What i know for sure is they are trained. They monitor me as they do their work and will make the right decision to do it all if it warrants. My tumor shrunk 1/2 and my breast are not big enough for a lumpectomy. 6 weeks or so after surgery, I start radiation. In 7-9 months the other breast comes off and reconstruction continues. BRCA2 leads my decisions. My younger sister has been diagnosed with it, as has her daughter. My older sister does not choose to be tested. She has a 50/50 chance. My younger sister is doing the gyno surgery and having mammograms and an MRI regularly for her breasts.

    From October, i must say i have been very fatigued. Being a regular platelet and blood donor for 40 years, i have had great blood products. Today, i am not getting products. I have had a great blood pressure, pulse and lost 23 pounds in my journey. My heart is good. I take every single day a day at a time. My every week chemo and everything else i have walked through. If I listen to the doctors and not go all over the internet researching my tests and procedures, I leave the process in the Drs. hands. It has worked. The City of Hope has been great.

  • kotchaj
    kotchaj Member Posts: 214
    edited February 2022
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    Oh Kathy! It is so very GOOD to hear from you! It sounds as if you've had a rough journey with everything going on including COVID on top of it, UGH. I'm so glad you posted because I was wondering how you were. You will be in my thoughts and prayers for your surgery. I had my left breast removed, the worst part was the drains. If you have an option of a nerve block, TAKE IT. It kept my pain at bay for 3 days then it was manageable. I overdid it a few times, ha!, but managed through.

    I am just now getting my energy back. It will happen, promise! Take care and keep us updated!

    Amanda


  • K-Gobby
    K-Gobby Member Posts: 144
    edited March 2022
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    Thank you Amanda,


    My surgery went well. Arrived at 5:30am, not let in the building till 5:55am. IT was a perfect time to meditate. I got in, got my pre-op room and a nurse to get vitals and get the process started. Around 7am was wheeled to the doctor who injected the dye in 4 places in my nipple. Not dreadful. Red Cross needles for when i donate platelets are way bigger. This is another place i let go of modesty. All men. And keeping humor in, two of the last men who would see my breast. Seems the blue dye highlights the vascular system???

    I am wheeled back down halls and buildings and run into my plastic surgeon. He meets me in the pre op room and closes the curtain to draw on my body. Open goes my hospital gown and there goes his marker. I realized during this that the curtain was not all the way closed. Oh no i thought!!!! A fellow walked by and looked in. A thought came in my head then, that that is literally the last man who will see my breast outside those in the operating room. It was a very interesting design. I had a skin saving mastectomy's, so he had to mark me up. After him, was the anesthesiologist. Mostly heard the things that could happen, and say God..just get me through this. I am letting go. After i told him i trust his process completely, my two surgeons came by. The one who removed my ovaries and fallopian tubes, Dr. Lee and Amy Polverini who removed my breast. My plastics surgeon was Dr. Carrey. Probably 8 or 8:30am i was greeted by the 2 nurses who would be in the operating room. They and the anesthesiologist and another wheeled me to the room. Once in, i heard behind me the anesthesiologist saying something, and the very kind and authentic nurse said in front of me that i need not worry, we will take care of you. And that was it. I was out. A couple minutes to look around the room...those nurses had spoken and i was out. No counting backword....

    Somewhere about 3pm i opened my eyes in recovery. Took a few minutes to wake up. Sometime within the hour, my sister showed up!!!! She had flown in from NY to care for me the first 9 days. She said the pain drugs they gave me had me talking big time. When i talked to friends later they said i talk a lot already. I was excited as i woke up as i had a nurse assigned to me until i moved into my overnight room. We talked and laughed a lot. I got a half a tuna sandwich and chips i think. My sister said recently that i got to eat fairly quick. I said are you kidding? The day before surgery i stopped eating at 6pm and drinking at 10pm. Took that medicated shower and went to sleep. Up at 4:30am to be ready for my ride. No drinks, no food, no gum, no nothing. So really it was a full day before i had anything.

    Once i got in the overnight room, i had to be helped to the bathroom as i was still off balance. My sister stayed a while then headed out to eat California food and go to my house. I got ice cubes, but no water that night. Interesting how the body feels. I loved the nurses drained the lines, i had 2. The overnight nurse let me sleep some, they took vitals, she let me get up every few hours for the bathroom and we took walks around the floor. Funny to see it in the night with only us on the one side, as in the morning, it is a bustling pre-op area on the other side of the hall. My nurse was super kind and supportive. The next day i had all my follow ups. Open goes my shirt for the plastics co doctor, later Dr. Carrey, the surgeon who removed the insides of my breast, the office PA of Dr. Lee and then the physical therapy and others came in to cover exercise and mobilizing to use just my right arm. My sister picked me up at about 2pm. I think they let me eat something, but my sister and i got in n out for dinner.

    What no one talked about was all the numbness. My breast and my abdomen from the other surgery. I did not have a BM for nearly 5 days. Almost resorted to an enema!! Instead Senna laxatives, fiber and i googled how to get your bowels to work. Bingo. 25 minutes later the flow began. Thank God!!!!! My sister kept me from moving my left arm, till i remembered myself. No lifting. Not a lot of moving, but after the first 2 days, she drove places and i sat. Went to Mom and Dads gravesite with my brother and nephew. My nephew is a marine so we enjoy Riverside National Cemetery in a special way. My sister really came to help me, so i funded most of her trip.

    In the end, it took one week plus a few days to get the lymph node drain removed, but the other one took almost 3 weeks. You have to be under 30CC's for 3 days. Seems i was likely still using my left arm more and the healing was slower. I did not cheat, and i did do next to nothing Sat and Sunday so my drains would lessen and my numbers would be low. Monday Feb 28th, my delightful plastics PA, removed that drain and i was free. Now i just had to clean and take care of my left breast. It is a skin sparing mastectomy's with an expander. Last week it was not healed enough, so next week i go back. It is looking way better, so my hope is i move to the next phase of the process. And yes, I will now be a Barbie. No nipple sparing.

    I met with the radiologist team, as i did not finish the chemo by three infusions, so the thought was radiation would kill the linger possible cells. They got good margins, no cancer anywhere else and nothing in the 3 lymph nodes removed. But the tumor was near the pectoral muscle. The visit was about an hour and in the end, Dr. Tan gave me all the reasons why, what and how, and Dr. Glaser gave my unique place. About 2 % have my tumor markers. He summed up to say if i was a family, ihe would say do not do the radiation. My rate of possible reoccurrence is 10 % or less. Radiation may give me 2 % more. For now, the current side effects and possible long term do not make it a useful procedure. Things always change, and new therapy's come about. I will always be alerted and if i do regular check ups, I will be ahead.

    In early April, I will hear from my medical oncologist. Next week i see the surgeon. She will likely talk about my right breast removal. They like 5-6-8 weeks to recover from the one side, so i have at least till April i think. All i know is i have not worried nor been filled with fear over any of this. Not a test or a procedure. I put my trust in the doctors who do these procedures over and over at the COH and know i will be ok. I will face whatever comes. Having a Stage 2.......makes my case rosier. I have 2 friends with stage 4. Pancreatic and breast that moved to the bones. Pray to the God of my understanding and have a circle of friends and 3 special women i share it all with. Do not do it alone. I expect once i become Barbie with both boobs, i will have a new level of acceptance. One done still leaves my other healthy. But BRCA2 may one day go for the right one. It must go. Just waiting for those follow up visits, to find the revised plan now that radiation is out.

    Kathy G saying thank you.....for sharing your journey too.