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13

Comments

  • mimiarmani
    mimiarmani Member Posts: 39
    edited November 2021

    Julie, hope Hubby comes home soon. It is a comfort just to be near. I'm still processing, but finding my way to a better mental health space.

  • jullyn
    jullyn Member Posts: 40
    edited November 2021

    MimiArmani, I go get him tomorrow. Its been over two weeks since I've seen him. We've never gone that long. I just hope he continues to improve when he gets home. We do have home therapy set up. So glad you have found someone to talk to.

    All you lovely ladies (and gentleman) are on my mind today. Stay strong and hang in there.

  • mimiarmani
    mimiarmani Member Posts: 39
    edited November 2021

    Juilyn, so glad hubby is home and with a plan. That is a long time to be apart if you haven't been through it before.

    Nicole thinking of you and your test tomorrow. Hope everyone is hanging in there and looking forward to the weekend.

  • jullyn
    jullyn Member Posts: 40
    edited December 2021

    I missed our meeting today! I hated it but my daughter came and brought lunch. Wishing everyone a Merry Christmas! ⛄🎄

    Julie

  • mimiarmani
    mimiarmani Member Posts: 39
    edited December 2021

    Thank you Julie! We missed you too. Family is so important and I'm glad your daughter came. Happy Holidays to you and your famliy!

  • Teri23
    Teri23 Member Posts: 8
    edited January 2022

    Glad to have found this thread again <3

  • pbchick
    pbchick Member Posts: 11
    edited January 2022

    Thank you all for welcoming me into the group today. I look forward to the support I will give and receive in this journey together.

  • moderators
    moderators Posts: 8,633
    edited January 2022

    Please share here. We want to hear how you all are doing in between meetups!


  • pbchick
    pbchick Member Posts: 11
    edited January 2022

    Good afternoon. I am hoping everyone is doing ok. I just got off the phone with my doctor's nurse who answered a ton of my latest questions. Looking forward to putting my DMX surgery behind me. 6 more days. I know I can do this, and having the connections with others that are going through this or already have helps me tremendously. Thank you all.

  • mimiarmani
    mimiarmani Member Posts: 39
    edited January 2022

    PB! Wanted to say best of luck with your DMX surgery. I am glad you found the group!

  • sunbunny5
    sunbunny5 Member Posts: 8
    edited January 2022

    Missed you all this week! I has my first Radiation treatment!! All went well =)

    Wanted to update you that my CT of the Ovaries and pelvic area founf nothing so I guess that was a false alarm. I am very happy, but at the same time I have to wonder...what did they see and where did it go?? The CA-125 blood test also indicated no ovarian cancer so ---yay!!

    Hope to talk next week- ill be dialing in likely b/c ill be driving back from my 1 PM Rad appt xoxo

  • jullyn
    jullyn Member Posts: 40
    edited January 2022

    Hello Sunbunny,

    Good to hear results of your CT were negative. Hope radiation is being kind to you.


  • jullyn
    jullyn Member Posts: 40
    edited February 2022

    Not sure if any of you will see this, but I couldn't wait to spread the news! Just got the call from my surgeon. PCR. Pathology Complete response!




  • pbchick
    pbchick Member Posts: 11
    edited February 2022

    I’m so happy to read your PCR news! That’s fantastic.

    Unfortunately I don’t have the best news. On Wednesday I spoke with my surgical oncologist. I was very excited when she told me that my pathology was back and she could tell me what it said. I knew pretty quickly it wasn't 100% good news when she started talking about the good points and then she told me that I had one of seven lymph nodes with a microscopic cancer cell. This is not the news I wanted, but it is so microscopic, that she says I may not even need radiology or chemo. She can't make that call though, that's the oncology department's job. They will likely send out for an Onko score which is a way of determining if chemo is needed. And my oncologist that I see next week will decide if it's reason enough for radiation. They would only be radiating my lymph node area, not my breast area, or lack there of.

    When she told me, My husband was standing behind me with his hand on my shoulder and I teared up some. I handled it pretty well, but after the call there was definitely some sobbing which I think is understandable. Again, not the best news, but certainly not the worst. I know I will continue on with my positive outlook, but I’m having a hard time keeping the tears away the past few days

  • mimiarmani
    mimiarmani Member Posts: 39
    edited February 2022

    Jullyn, great news! Thank you for sharing.

    PB Chick - hang in there - sometimes it feels like a rollercoaster and there is no way to get off n mid-loop.

    I'm going to miss this weeks check in as I have too many work meetings. 9 to 11, then 11 to 12 and then 1 to 2. I'll be thinking about all of you!


  • pbchick
    pbchick Member Posts: 11
    edited February 2022

    MimiArmani- Thank you. Trying.

    I saw my oncologist yesterday and she is recommending chemo. Here we go. I was sad when I left the doctor's office and then I just got so angry. I went back to sad the rest of the day yesterday and then again this morning, but I had a wonderful visit from a friend that I haven't seen since before the surgery and it really lifted my spirits. We visited for 3 hours outside on my patio, both wearing masks, and both very happy to be able to spend the time together. It was such a relief to have a visit with someone that I didn't have to address mask wearing at all with, she wore it the whole time and was happy to do so. I tend to be so concerned about how my safety measures will make others feel and I know that I shouldn't do that to myself, but I do and it was so refreshing to have it be a completely non-issue.

    So I have a decision to make. Do I do DigniCap or no. It is a cold capping company. My oncologist booked me for it to allow me to decide and not miss the slot while I'm deciding. I feel like it isn't worth it. My understanding is that it is super uncomfortable during, I have to be capped 30 minutes before and for 90 or more minutes after the chemo infusion, and I will still lose some of my hair even with it. Oh, and most insurance doesn't cover it, so I'll be out $1200 if not more. Can anyone give me their thoughts? I know there is at least one person in the weekly Tuesday zoom group that did cold capping, but not sure if anyone else besides her has done it.

  • jullyn
    jullyn Member Posts: 40
    edited February 2022

    PBChick... I think I have been sad and or angry since my diagnosis in August. That and disbelief. I chose not to old cap. I received TCHP and frankly all happened so fast I pretty much didn't even consider it. That said, being bald is the one thing that bothers me the most. Its a constant reminder of cancer. My hair is just now starting to grow back.

    MimiArmani, missed you on the meeting. I finally told my boss today I am pretty sure I am going to cutback to part time permanently. I miss the money, but when this is done, want to enjoy life and not Spend so much time working.


  • KLinDallas
    KLinDallas Member Posts: 14
    edited February 2022

    PBChick,

    So sorry to hear that the results weren't what you expected. When they say this is a journey, they sure are right about that! One day at a time, Sister. Breathe.

    I hope that I'm not too late to share my cold capping results. I did use Warrior Caps for cold capping. No, it is not fun. You absolutely have to rely on a partner who is willing to share time on the day of treatment as well as your return home. You feel like crap with the treatment, and now you have to continue the cold capping. So, you just can't go to bed. There are lots of men/husbands/partners who were in charge of cold capping, so get your hubby on board, if possible. It will give him an opportunity to stay busy, and the support can be a meaningful experience for both of you. My cold capper was my daughter, and she was great. We had to change cold caps every 23 minutes, and she logged in the time as well as working from my infusion room. Almost forgot to mention, that cold capping ensures that you get a private room. The nurses love the private room patients, because they basically leave you on your own so they don't have to work as much.

    That said, I'm happy with the results! While I did lose hair (it got so thin that I needed to cut off the length afterwards), I am still happy that I have enough regrowth to look fairly normal now. Losing your hair is a constant reminder of what you've been thru to you and the wonderful support group that surrounds you. I felt that I needed to move ahead, and it has helped my mental health. It isn't cheap, and only Aetna covers the cost. Eventually, I'm sure that will change, but unfortunately, we are ahead of the curve.

    That said, I had also looked into a wig salon that catered to breast cancer patients. That was my backup, and I was very impressed with the options that were presented. First, health insurance should cover the cost of a wig along with other prosthetics if you need. They know the ins and outs, so they can assist you from a financial perspective. They can file all the insurance paperwork as well. I loved the baseball cap wig that ran around $200. If I had gone that route, I would have definitely purchased that one. It is something that I would probably have used after active treatment....for those quick errands when you just don't want to think about hair! I tried on several wigs as well. The expensive ones were human hair and hand woven, but the synthetic ones were pretty cute too. So, whatever you decide, it will be fine.

    Wishing you peace as you move ahead.


  • pbchick
    pbchick Member Posts: 11
    edited February 2022

    KLinDallas,

    Thank you so much for your thorough reply and thoughtful words. I am not sure how I would have a cold capping partner because no one is allowed into any of the doctor facilities with me. I would be using DigniCap. Maybe that'll change before I start on 3/1, but I doubt it. Also, it sounded like you were doing stuff at home too? Is that correct?

  • pbchick
    pbchick Member Posts: 11
    edited February 2022

    KLinDallas,

    If you don't mind me asking, I was wondering why you decided not to get the booster shot. Just curious.

  • KLinDallas
    KLinDallas Member Posts: 14
    edited February 2022

    PBChick,

    I did cold capping thru Covid too, and the normal parameters about not letting anyone join you were not enforced. As I mentioned, the cold cappers are provided with a separate private room (at no additional cost) to allow them and their cold capping partner the space to work. So, you are not in the big infusion room. (I also wondered if the private room was supplied so that those who chose not to cold cap didn't wonder about their choice?) Yes, we changed cold caps every 25 minutes, and continued that process for 3 hours after the infusion ended. We even had to pull over to the side of the road so that we could stay on schedule! It is a commitment for sure, but I am very pleased that I was able to save some hair. That is the one thing that surveyed chemo patients hated--the loss of hair.

    I chose to do Warrior Caps, which are one of suppliers with good results. (They were also one of the least expensive, and their founder is a BC triple negative survivor. She has walked the walk, and that meant a lot to me.) Finally, take a look at this website for general info. and access to financial grants:

    www.Rapunzelproject.org/coldcaps


  • KLinDallas
    KLinDallas Member Posts: 14
    edited February 2022

    PBChick,

    Just noticed the other question. I chose not to do the Covid vax booster, because I started researching the side effects that they are not yet readily available to the general public. This vaccine was allowed thru emergency orders due to the pandemic, so it has not yet been thoroughly tested. (That process would take many years, and this remedy was rushed to market to protect the most vulnerable.) Now that the Covid numbers are fallling, I simply saw no good reason to add another variable to my already compromised immune system. You need to make these personal decisions with your health care providers. In my case, I discussed my decision with my oncologist as well as my primary health provider. We reviewed all of my bloodwork as well as my situation. I decided that the booster was not necessary in my case. BTW I also have declined the annual Flu shot. Hope that helps!

  • jullyn
    jullyn Member Posts: 40
    edited February 2022

    Hello all! I realized today I will miss our Zoom Tuesday. Husband has a couple doctor appointments and isn't able to go on his own. I had my rad consult today. It wasn't what I expected. I asked about vitamins and supplements and he said its up to you. Said he wouldnt tell me not to. If I have issues then we would address It. No creams advised unless needed. lasted all about 5 minutes with the doctor. Very straight forward. I go Wednesday for the CT and mapping. I expected that to be done today but not. I hear good things about him so we can only hope. Luckily, the nurse was a bit more helpful.


  • moderators
    moderators Posts: 8,633
    edited February 2022

    We'll miss you on Tuesday, Jullyn! Good luck on Wednesday -- we look forward to hearing how it goes!

    --The Mods

  • kater2021
    kater2021 Member Posts: 9
    edited February 2022

    Hi all— first, PBChick, so sorry that results were not as hoped. Sending you my good thoughts and hopes that you can just ride all the feelings with support from others <3

    So— my “second A/C” update not great. I’m actually writing from a hospital room. Landed in ER on Thurs with fever, shortness of breath, and dizziness. Turns out despite nebulasta my neutrophils completely tanked (=.1 — where below .5 is considered critical) and I was diagnosed with neutropenic fever and admitted. In work up unexpectedly also found moderately sized pulmonary embolism. All together pretty scary— ok, actually the neutropenic fever and suspected infection was pretty terrifying. The current hypothesis is that it was a bacterial infection of a scratch on my elbow— one of the bumps of the pembro rash that I have had. (So our discussion about the importance of really, really attending to all cuts, etc however small is definitely relevant!!) Good news is that today I’m officially no longer neutropenic and the fever is gone, so the continuous course of several heavy-duty antibiotics did their job and I’m on the mend. The docs suspect that my PE is explained by cancer alone (not the chemo)- and that it likely explains my breathlessness / dizziness and those symptoms are likely to last a few weeks while my lungs absorb the clot. I’m still in the hospital as of writing (Monday) because my platelets are too low to send me home with oral blood thinners— so now on IV heparin and waiting for my platelets to recover from AC (have to get to the magic # of 50). All around so many things in delicate balance!

    Lessons learned:

    - this is truly a crazy journey, just can’t predict and need to ride the wave(s)

    - really watch for bacterial infection when your neutrophils are low. Seriously.

    - Neulasta, I have learned, shortens how long it takes to *recover* from A/C induced neutropenia (from 7 days to 2 days on average, so not irrelevant)— but does not prevent you from neutropenia

    - heavy-duty antibiotics are amazing - thank goodness

    - tell your doc if you have any shortness of breath/dizziness, and honestly, push for CT if at all concerned about an embolism. It does not show up on clinical exam nor on chest X-Ray at all. no one thought I had a PE, and it turns out, it was not even small.

    Not sure if I’ll be able to join tomorrow or not, but wanted to share the update with you all. If not, sending good thoughts your way and looking forward to joining once I’m home. (Assuming today or tomorrow my platelets will reach that #).

    What a journey! Sending good, healing thoughts to all.

  • txlorelei
    txlorelei Member Posts: 69
    edited February 2022

    Wow, Kate! I hope things improve soon

  • pbchick
    pbchick Member Posts: 11
    edited February 2022

    KLinDallas,

    I have never gotten the flu shot, so I am with you there, but I did get the booster. It has calmed my Covid terror significantly even though I will go back to hiding in my house during chemo. I have been a bit more out and about doing errands in anticipation of the chemo that starts next Tuesday. Has anyone else done the chemo schedule of an infusion every three weeks? My expectation is around the time I am feeling better I will be going in for the next infusion.

    Jullyn,

    Sending you support during your CT and mapping as well as your start of treatment. We will miss you today.

    Kate,

    Thank you for your good thoughts which are happily received. I am starting to perk back up as I go back to gathering information about my upcoming treatment and what I need to bring, etc. It's funny that the process of all that takes me out of the emotion of it sometimes and allows me to go back to the strong fighting of it. Hopefully I will hang onto that feeling through the treatment itself like I did during the surgery recovery.

    Regarding your treatment and subsequent hospitalization, my goodness, that's a lot to take in. I am so impressed by your ability to turn that all into the list of learning moments that you can share with us as well. You are truly a warrior. Sending good and healing thoughts right back to you as well. I hope you are back home soon.

  • pbchick
    pbchick Member Posts: 11
    edited February 2022

    Hey everybody. I have fantastic news! The radiation oncologist is not recommending radiation! I'm so relieved. The reason why not is because they are confident that the surgery I did, coupled with the fact that I am doing chemo and that the 1 cell they found was microscopic, are enough to not need the radiation too. I really needed that win. I woke up the next day back to the positive attitude again. I feel so ready to take on chemo. If I can get situated to join on Tuesday I will, but it will be during my chemo infusion, so I'm not sure. If I can't, I just want to thank you all for your support and being the positive examples that I draw strength from. We Can Do This!! My love and light and support goes out to all of you.

  • KLinDallas
    KLinDallas Member Posts: 14
    edited February 2022

    Yay, PBChick, so very happy for you! Thank you for sharing your good news. I was fortunate to not deal with radiation either (since I have the bilateral mastectomy), and any treatment that you can avoid is huge. I've learned that our bodies fight to regain health, and everything we can do/avoid to contribute to the healing process is very important to long term recovery. You got this! Big hugs to you!!!

  • Teri23
    Teri23 Member Posts: 8
    edited March 2022

    Hey everyone,

    I've been having issues with my login here, so I haven't posted much recently. I'm hoping to stay in touch better between Zoom meetings.

    Also, when I was finally able to log in again today, the system asked me to re-input my diagnosis, which I did, then it didn't save it. Ugh. I'll try to add it again in a couple of days, since I understand the site is undergoing some updates.

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