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Treatment Zoom Meetup (Thursdays) place to keep chatting

Hi all! We apologize -- in thinking about creating these threads, we actually thought it might be more practical to have all groups (Tuesday and Thursday) to post on the same thread. This way, if you attend more than one meeting, you won't have to submit any updates to more than one thread to reach all of your friends. AND, you may even meet some other members and get additional support from others you don't see in your usual meetup.

You can connect with everyone on the new existing In Treatment Zoom Meetup thread here: https://community.breastcancer.org/forum/6/topics/...

We'll lock this thread to avoid confusion. Thanks for your understanding!

Sincerely,
The Mods

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Comments

  • sarahmaude
    sarahmaude Member Posts: 326
    edited April 2022

    Thanks for making this board! I’m Cyndi in the support group. (SarahMaude was my basset hound when I was a child.)

    Still feeling better and better, but ready for some pain meds after this long day

  • moderators
    moderators Posts: 7,679
    edited April 2022

    Hi Cyndi! So glad you're feeling better, but yes, listen to your body and take what you need. And take it easy these next few days!

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited April 2022

    Hi, this is Catherine Wilson aka KathrynW1thase,

    I'm hoping this is the right forum. I started losing my hair on screen shortly after the day 13 hair loss discussion. Well, I've pulled about a one gallon Ziplok baggie of hair as of 6:30Pm after treatment #2. Photo below. It turned into a scientific experiment with mom documenting the process in between fitsof laughter and clever dialogue. At one point I sent a photo of the pile of follicular refugees to my former stylist and his response was “you lost that much and still have a full head of hair by most people".

    Challenge accepted! Thirty minutes later I had a balding spot in the back and almost all the darker greys were gone. The white hairs are hanging on for dear life. I used gentle fingers thru the hair, tighter fingers thru the hair, tugging hair, and eventually resorted to “my corgi is blowing his coat, got the vacuum" method 9(see photo below). The later wasn't as efficient but it did make a nice breeze flow across my scalp.

    My advice, set an appointment to cut it very very short a day or two after day #13, it itches and sheds constantly. It's depressing to see them fall out in small numbers. Or have a really fun time pulling it out, letting others pull it out, make it a race to see who can pull out the most in a set time…have a great time celebrating that the chemo is actually working…this is your proof…that ever elusive proof we need so badly!

    I'll sport a new look on Thursday just for y'all.

    imageimage

    image

  • sarahmaude
    sarahmaude Member Posts: 326
    edited April 2022

    Kathrynnw1thasea, I love it! Your sense of humor in the face of (hair) loss made me smile with empathy.

    I missed Thursday because I was at the attorney’s office signing closing papers on one of Mom’s assets. She died one year ago this month and I’ve been serving a thankless role as her estate executor. Will be thrilled to have this one behind me!

    Quick update on me: I got my surgical path report back and it was the best possible outcome. Clear margins and negative sentinel node. I’m seeing my MO on Tuesday. There is a slight chance she’ll have my OncoTypeDx back. Regardless, we’ll be discussing my baseline bone density scan results that show I already have osteoporosis prior to any treatment effects. Ugh. I just thought I was healthy.

    I’m trying to stop reading everything I can about my prognosis. Wasn’t too successful yesterday. My PR- seems to be more of a risk than either doctor mentioned. Also, my grade 3 scares me more than it did before.

    It sounds like radiation will be important to zapping out as much of what’s left as possible. First appointment with RO on Friday. I don’t know who invented BC, but at this point, I’d like a talk with their manager.

    Resolution today: shop so I have food in the house this week and take a walk to counteract my 57 year old brittle bones. And stop googling my removed tumor!!

  • moderators
    moderators Posts: 7,679
    edited April 2022

    KathrynW1thase, we can't wait to see your new look on Thursday! Sarahmaude, we missed you last week, but yay for clear margins and negative node! Small wins, right? We hope your appointment with your MO tomorrow answers more questions than it raises, we hope to see you and get the rundown this week Hug

  • beginagain22
    beginagain22 Member Posts: 100
    edited April 2022

    Cyndi,

    So glad you got a good path report! The grade 3 gives me the sweats too. I see my MO tomorrow to get the game plan. Oncotype came back at 15. Not sure how much grade 3 plays into decisions there, I guess I find out tomorrow. My path report after surgery was 1.9cm tumor, about double what I expected. 1 micromet in sentinel node so my BSO took 10 in an ALND. 1 of the 10 had a sprinkling? Less than a micromet. Clear margins, surgeon was confident it was out. DMX looks great and closure is flat as a pancake. Feeling great and back to the office and the gym as of last Tuesday. Just anxious to see what tomorrow holds.

    Gin

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited April 2022

    Sarahmaude,

    All that glee melted down in the shower a day later, but I’m back in good spirits again. Now I’m trying to find a pattern for some fun hats to make from my fabric stash. I’m looking for something to give me some height to my caps. Mine is not a face for flat tops on scarves and hats. I need the illusion of volume and lift. I’m also not one who wears a lot of makeup. My skin freaks out with any type of foundation, but I could use some eyebrow and eye makeup tips.

    Looking forward to Thursday

  • sarahmaude
    sarahmaude Member Posts: 326
    edited April 2022

    Catherine (and you can call me Cyndi here),

    I’m now resigning myself to four rounds of TC. I (geek that I am) found an OncoType DX simulator and data table and know that I’ve got an incredibly low chance of escaping chemo.

    I am not going to be naturally pretty without hair. In fact, I’m dreading seeing my scar from the bike accident I had in 1985. Please share any hat patterns you find. I’ve also got a lot of great fabrics in my stash. I’ve been reading enough to see that I’ll also be a sobbing mess when my hair is actually gone. I have to practice being okay with it, because I’m really not.

    I asked my MO about cold capping and she said that most of her patients who’ve done it have below average satisfaction. My dad was one of the rare people who didn’t lose all of his hair with one of his multiple myeloma treatments. He did nothing and “only” lost 90% of his hair. He was so proud of that he just left it. He looked very strange with his wispy halo. My mom really wanted him to just cut it off. Any chance I’ll resemble him just makes me shudder.

    I’m so glad to know I have company on this journey through the valley of pooon the way to survival. Hugs, and gentle, sisterly strokes to your head.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited April 2022

    Cyndi,

    I can definitely relate to the hair loss anxiety. I made it to the office on Tuesday with much trepidation but folks were kind and encouraging. Unfortunately I'm having more side effects this round and I've stayed home since Tuesday. We definitely have to make adjustments to our routines and rest.

    I will definitely share any patterns I find. I found a really interesting website called headcovers.com with all sorts of things of interest. Check it out.

    See you soon,

    Catherin

  • sarahmaude
    sarahmaude Member Posts: 326
    edited April 2022

    kathrynwithasea, missed you today. Hope all is okay with you!

    Other Thursday Zoom friends, I enjoyed seeing and meeting those who I met for the first time today.

    By the way, I listened to the first Rotten Melons podcast. It was very real, very funny, and quite explicit, though in a way I can completely relate. Great recommendation!

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited April 2022

    Cyndi,

    I missed y’all today too! Can I claim “chemo-brain” if I forgot today was Thursday but I know tomorrow is Friday? Not sure how that works…but I was stuck at a pharmacy waiting on a refill for my mom, got home at 5:00 and totally spaced out.

    Zoom friends,

    It was a very long and frustrating day. I should start by saying that earlier this week I made the decision to cut back on my work schedule. It was getting to be too much for me. My employer is amazing! I’ll be doing 20 hours a week plus 10 hours of donated PTO to keep my full-time benefits status.

    So, back to the frustration part. My mom is staying with me through this battle. She turns 80 in a few weeks and she is having a lot of trouble with short term memory. It’s heartbreaking but she is coming to terms with talking to her doctor soon. She ran out of some of her meds and we’ve had a real challenge getting one in particular refilled. I finally stepped in to help after she went to the wrong store on the wrong day expecting to pickup the meds only to have them request a transfer from the 1st store creating yet another delay. The 2nd store then told us the medication didn’t arrive in the new delivery because someone forgot to order it. The 3rd location affiliated with the 2nd then told us they didn’t have a request from the 2nd store in spite of the fact that I personally took the call telling us where to go and when to be there.
    Well, I hadn’t taken an Ativan today so I went into angry project manager mode and gave them what for. One of the main reasons for cutting back on work is the increasing difficulty I’m having tolerating annoying situations. This was not one of my most diplomatic moments, but it got the job done. Unfortunately they felt no need to be speedy about resolving the situation until it became evident that a repeat dressing down was imminent. Luckily that time it only took what we call in my family “The Look”. All the women on my mom’s side of the family have it. I’ve made a grown man jump back in fear and my sister can make small children cry. It’s a scary thing best wielded only on the truly deserving. Apparently it works even while wearing a mask. Who knew? Anyway, by the time we got home I was exhausted, relieved to have made it through, and ready for a nap.

    I will have to check out the Rotten Melons podcast. Great title! I have a page called “Icky Tata”. I use it to keep my friends and family posted. You’ve got to keep your sense of humor.

    I look forward to next Thursday. Round 3 is tomorrow. Sylvia, hope your round 2 is going better than round 1. I’m sending you good vibes

  • katg
    katg Member Posts: 206
    edited May 2022

    Hi there. I started chemo Aug 14th of 2021, the next week i cut my long hair to my shoulders at the city of hope. My sister went out with me to buy 2 wigs. I ordered 2 beanie caps. Same day my sister an i shopped for wigs, i had her cut my hair to 3 inches all over. It had been thinned by my City of Hope stylist, so i figured i could handle the rest coming out. Shower after shower, it came out slowly. No big clumps, just bits and pieces till i really had what was mentioned above. Wisps. Shocking? Oh it was most certainly that! No one saw me like that. I am not even sure my sister did who stayed with me. I do have a few pictures and will post here at some point.

    It is now April, chemo was done late December. My hair is covering my head. A more brown then my red. Nearly 5 months and i have 1 inch possibly.

    I am though, looking at myself in the mirror and not seeing the women with red hair. I am seeing myself with no hair or with a beanie as i am now. Knowing one day my hair will be long enough and warm enough to be free. Having long hair for 40 years, I never had cold ears or a cold neck. Never. This is a new experience for me. Wearing beanies keeps my head warm.

    Check out headcovers.com. Treat yourself to a new hat! Sometimes i double them up to give myself more bulk on my head!!!!

  • blums8
    blums8 Member Posts: 17
    edited April 2022

    So nice to meet new people last night on the Thursday night group. I am glad that I pushed myself to join up, and I am glad that this forum exists as well. I look forward to the meet up next week. I feel that there was good information shared last night and it was a comfortable place to share feelings too.

    Blums8.............Janice

  • sarahmaude
    sarahmaude Member Posts: 326
    edited April 2022

    Catherine (and fellow Zoom friends),

    Wow, I can totally relate to your angry project manager persona! Your comment about “the look” reminded me of one of my more stressful feelings during my BC journey. Now, I’ll preface this post by saying that these days, when I’m in a Dr.’s waiting room, my level of anxiety is already on the higher side. I will say that I love quiet waiting rooms. If there is a television on, something like golf, or the weather channel is fine. HGTV is okay. Any news station is stressful, and game shows are dreadful.

    So, on one such instance, I’m waiting on my surgeon appointment. A young couple comes in the door. I think they aren’t older than 30. She seems to be normal in how she acts in the room. He, on the other hand. Well, first, he’s wearing matching brightly colored sweat pants and hoodie. He sits in the loveseat they chose in a very casual posture, slumps way down. Any of that would never have made me much attention. Until, he starts playing music videos out lout on his phone. After a few minutes, I couldn’t help it, and I gave him what I call, “the mom look”. He was oblivious, but his partner, elbowed him and said to turn down the volume, that lady is looking at you. She offered him ear buds, which he declined. What did he do next? Pulls the phone up above his head into selfie position. Leans into her and starts taking pictures in front of the big pink ribbon banner on the wall over them. By then, I’m just over them. All I can think of is narcissistic social media posts. I’m looking around to see if there is a corner I can find to get away from his nonsense. I was thinking how awful it must be to bring a support person who was so obviously self focused. Thankfully, at that moment I was called back for my appointment. Between my stress with (at that time) no plan for my treatment, and my annoyance with his intrusion into my attempt to be calm, I stayed keyed up. I’ll say that the surgeon was wonderful in helping me calm down, and she did have a plan.

    All this to say, going through treatment is hard enough without the rest of the world being incompetent and weird. Things like pharmacy nonsense can be the worst. It’s a shame we have to medicate to handle other people just being extremely human. I’m glad you are able to go part time for now. I hope you can do some recharging in the time you don’t have to work.

    Janice, glad you found us in the board! It was great to see you yesterday

    Katg, thanks for sharing your hair story! Wisps. My dad was so proud of his. He kept about 10% of his hair back when he had chemo. He was very proud of his chemo combover. I thought he looked a little deranged, but I never said that to him. He died 8 years ago, and now I think if he was able to have any positive feeling about his remaining hair, that was great.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited April 2022

    Hello everyone!

    I made it through AC infusion #3 with only a slight headache. We slowed down the Cytoxan drip to 70 minutes and I used African nasal spray at about the 30 minute mark when the sinus pressure hit. That and a good nap when we got home has eliminated the pain. The nurse said we can try a little longer next time. Slow and steady…


    Sylvia, I hope your round #2 went much better than the first. I’m sorry if I missed your smiling face on Thursday.

    My MO said I was doing great and gave me new meds for a mouth sore, a nasal sore and to help me stay asleep for more that 2 hours at a time. We really do just have to remember to ask. Baylor uses an online page where you can keep a journal the doctor can see. I use it to track my side effects, temperature, weight, and how I’m feeling in general. Then I make a list of the “new things”. My MO’s motto is we want to get you through this as comfortably as possible.

    Cyndi, what a difference context makes! Today at the Baylor Sammons Cancer I had people hunting me down to give me news and corrected information,mostly pharmacy related. I felt like some sort of celebrity. Even at the local pharmacy #2 in my previous story the shift on duty today (none of which were on duty yesterday) were going above and beyond.

    Oh man! Sleep is hitting me hard right now…maybe the new sleep aide is working. Night y’all

  • sarahmaude
    sarahmaude Member Posts: 326
    edited April 2022

    Hooray to Kathryn for finishing her third treatment last week! I'll bet you meant Afrin nose spray...that was a funny auto correct.SillyHeart

    What you said about context, Kathryn. I've thought about that a lot over the past week, and I think that's an important thought for me, and in some ways other than you mentioned. My frustration with that young man was really not about him. It was all about ME and my level of stress. In normal times, I might have been a little annoyed and internally rolled my eyes. But when I needed a peaceful environment, his relatively minor behavior sent me into a blood pressure raising state. I need to coach myself on that as I move forward. And also to think about the fact that he probably wasn't at his best either. I'm sure there are many other places he would have rather been.

    I'm looking forward to seeing you all again today.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited April 2022

    Cyndi,

    I just re-read my post about the Afrin. I had to laugh because I have just had to fight with autocorrect again!

    I remember, all too well, the early days without a plan and without all the variables defined in order to make that plan. I was very interested when you spoke in group about having done your research on the treatment recommendations. I had been wondering why some of the AC-T regimens had different numbers of cycles and lengths between infusions. I am relieved to read that my MO has recommended the most current treatment. I’m so glad you seem to be more comfortable with your plan. I loved your statement about needing to be told why to “not do something”. I’m totally the same in that regard…and I love blueberries with yogurt! In fact, I’m going to have some right now!

    See you again soon

  • blums8
    blums8 Member Posts: 17
    edited April 2022

    Kathryn,

    This is Janice from the Thursday group. If you don't mind my asking, what sleep aid did your MO recommend?

    I have tried a few things, and just can't seem to get a handle on the night time sleeping.

    Hope you enjoyed your yogurt and blueberries.

    Take Care,

    Janice

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited May 2022

    Janice,

    I use Ambien CR regularly and we added trazodone. It seems to be helping. The yogurt and blueberries were yummy!

    Hope your MO can get you some sleep relief!

    Catherin

  • sarahmaude
    sarahmaude Member Posts: 326
    edited May 2022

    Hope to see you all this afternoon. Running to the pharmacy now so I'm on time!

    blum8, I second the recommendation for Ambien. I take the regular version, because I tend to stay asleep, and I like being able to divide the pills. Even 1/4 of a 10 mg tablet really helps me. I also take the Sleep 3 Melatonin that they sell at Costco...I think it's currently on sale this month.

  • katg
    katg Member Posts: 206
    edited May 2022

    sarahmaude aka cyndi, my brother had 2 basset hounds when we were young. Natasha Rue was her name. Jazmine was the 2nd. I loved those two. I bet you loved yours.

    I was on today, please identify if you joined. I must say i wish i pegged names on the zoom screen to remember all of you. I think i remember a few of you. I am Kathllen in zoom meetings.

    Good to see you all and glad i remembered to log in! I want to say call to the universe or tell someone your wishes. My younger sister asked if our older sister had messaged me. I said no. She rarely does. Then a few hours later, that sister messaged me. See how i was doing with my blood clot. I then gave her the Moh's nose surgery rundown. She had had it on her face a few years ago. Needed plastic surgery to fix it.

  • sarahmaude
    sarahmaude Member Posts: 326
    edited May 2022

    katg, I did love my basset hound. She was so patient with all three of us kids. We'd sit on her, wrap her ears around her face, and overall, just enjoy her sweetness. We've got a really cute picture of my brother around the age of 2 sharing an ice cream cone with her. She was such a good dog. Since I was college age, I've had two purebred dogs, a Pembroke Welsh Corgi and a Papillon. Everyone else has been all mixed up. Today I've got two boxer mixes. One is mixed with German Shepherd, the other is undetermined. They look nothing alike. Six years apart in age and from different parts of the state. It's as if I can measure stages of my life by the dogs who were along for those years.

    It was a good group today. Hope a few more from today's meeting find us here. It's fun to catch up afterward and midweek. I hope my sense of humor isn't too much. I am taking all of this very seriously, and I know that compared to some others, I'm fortunate. But for me, if I don't laugh, I think cancer wins. And just for today, I'm ahead in this game.



  • katg
    katg Member Posts: 206
    edited May 2022

    Thank you for posting. I love your Bassett hound and family stories.

    i too loved todays meet up. It would be great if more join. The moderators are very good and always post links to whatever we share. Did you say you take letrazole? I call it Femara.

  • sarahmaude
    sarahmaude Member Posts: 326
    edited May 2022

    Katg, I take Arimidex.

    I love meeting and getting to know everyone in the Zoom group. I think the size of the group tonight was just right. If there are too many, it’s hard to get around to everyone and make connections. Smaller is ok, but more experience in the group is very helpful. Our moderators are excellent.

  • blums8
    blums8 Member Posts: 17
    edited May 2022

    Thanks so much for your input. I started with trazodone initially after diagnosis, and it stopped working for me. Having taken a break from it, I might try it again.

    I have used ambien in the past for travel, but it hasn't worked as well. I might need to really go back to some "sleep Hygiene" again too. No tv within an hour of bed.......etc. Wednesday I was so tired from one of the treatment drugs that I slept the whole night without any additional meds!!!


    Have a great day.

    Janice

  • blums8
    blums8 Member Posts: 17
    edited May 2022

    SaraMaude...........I love the humor! I get the feeling that others do as well. I have no appetite today and not much taste. Just making myself eat some small meals. Hope you are doing well.

    Katg. nice seeing you today. I feel like maybe you were on three weeks ago when I tried the group for the first time.


    You guys are making me think we need to get a dog. Although when this journey is over, we are hoping to travel more. That will be easier without a pet.

    Hope your day goes well.


    Janice aka blums8


  • sarahmaude
    sarahmaude Member Posts: 326
    edited May 2022

    blum8, I don't think Ambien works for everyone. Sleep is a very strange thing, and so important! I was able to sleep just fine without anything other than melatonin last night. Glad you had a good night as well.

    Dogs are amazing as companions and even better than therapy for many of us, and if you are able to hire in home pet sitters/dog walkers can do very well when their people travel. We've even enjoyed traveling to some drivable distance beaches with our dogs.

    That being said, when you get a dog, it's a long and sometimes expensive commitment. Our papillon lived to be 16 years and 9 months old. At the end, he was blind, deaf, and had a lot of muscle loss in his hips due to age and a surgery he'd had years ago. Right now, I've got one little guy on my payroll who belongs to my college student daughter (read: no income) and we've had two high dollar surgeries for him in the past 10 months. I wouldn't have made any other decision. One, a scary and weird cancer that caused fluid to build up around his heart, was to save his life. The second, cruciate ligament surgery, allowed him to move without pain. He's still in my house recovering with me for that one.

    I can't imagine my life without a canine fur baby in it. I love cats as well, but am dreadfully allergic, so I can't live with them.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited May 2022

    Cyndi,

    OMG! I’ve had 2 Pembroke Welsh corgis and we have had 5 in the family. Our first was a black & tan (she only had one tiny spot of white on her butt) when we were kids in Norway. Little did we know that black & tan was so rare. Duchess was the start of the corgi obsession/tradition. My first, Plato, was a black headed tri and a graduation present for my bachelor’s degree. Now comes the amazing part. My second corgi, Taliesin that’s Wright (aka Tali), a beautiful red sable who was mon-orchid and became available to me just a few days before the litter I was supposed to get a selection from had complications. The pups didn’t survive but the mom did thankfully. Tali was from a different kennel whose bloodlines are all built off Plato’s sire. I didn’t know that when I picked her out as someone I wanted to speak to at a dog show. We formed a great bond over the connection to Plato’s bloodline. My sister (Norma) has had 2 corgis from there as well. One was an aunt of Tali’s (Carmen) and one was a nephew of Tali’s (Tom Jones, aka TJ). I’m currently corgiless and Norma now has a Maltese. He is cute, but he’s no corgi!

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited May 2022

    Cyndi,

    I'm curious. Wer you allergic to the corgi? I test allergic to dogs and most breeds do bother me when they get “doggy smelling", but I'm not allergic to corgis. I have had neighbors who are allergic to cats, who are also sensitive to corgis. It's a very weird thing

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 82
    edited May 2022

    Good afternoon Zoomies,

    It was great seeing you all on Thursday. I’m Catherine aka Kathrynwithasea. Cyndi and I share that sense of humor! Ativan helps a lot too…

    AC #4 is complete. I didn’t need more heparin to get good drawback (blood draw) but I did have to do some contortions during the Red Devil push. We took 75 minutes on the Cytoxan this time and I used the nose spray (Afrin not African, take that autocorrect!). No headache this time! Whoop! However, the chemo brain seems to have hit immediately after…or it could be the anxiety over port function…and I predict I won’t be taking Miralax in the morning. Still no nausea though. I’m thinking about you Sylvia!

    The rash has gotten more raw but the cream I picked up today seems to be working. No one is quit sure why I have it. It’s normal to other chemotherapy drugs, but apparently very rare on AC. They are guessing it is the Cytoxan. Hey, my grandmother used to say “Our family has never been accused of being “normal”’.

    New developments at physical therapy include something called cording (axillary web syndrome) and a little lymphedema. The pain in my elbow is the result of a cord. How do you get rid of it? Painfully massage it to break it up. If you’ve ever had PT for muscle spasms, you know what I’m talking about. I have the bruises to prove it, but in her defense I was dosed up on heparin. She also taught me to do self massage for the lymphedema. It’s pretty amazing and also helps with the nerve pain from the axillary node dissection and lumpectomy scars.

    Looking forward to seeing you all again soon!