Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Triple Negative Stage IV

1…7980828485…103

Comments

  • kaayborg
    kaayborg Member Posts: 576
    edited April 2018

    Minxie, wishing to hear from you. Post if you can.

    Sharjin, glad to hear such great news. May it continue on and on.




  • Sharjin
    Sharjin Member Posts: 37
    edited April 2018

    Sharmal, thank you. Did you get your mom’s scan result yet?

    Kaayborg, glad to hear from you. How are you doing? How many sessions of WBR you will have?

    Kaylenne, remembering you. Let us know how are you doing if possible.

    Hartrish, how is everything going with you?

  • hartrish
    hartrish Member Posts: 290
    edited April 2018

    Sharjin: glad you mom is feeling better. Hoping SEs from Carbo/Gemzar do not happen.

    I am doing fine. Finished cycle 11 of Carbo/Gemzar. Been on the drugs for 8 months and hope they continue to work. Fatigued but managing. Nauseated more the last 3 cycles but they switched me from aloxi to oral zofran. I also have compazine and Ativan for nausea as well. Next MRI is in June after every 3 cycles. TMs staying in the 80s, hoping they drop some more but MO says may level off there since I still have cancer in the liver. MO was excited last I saw her, saying very little cancer showing on MRI now which is great because I had diffuse cancer throughout my liver when I started.

    Wishing everyone success with their treatments. Praying for divine healing, comfort and strength for everyoneevery night.

  • hartrish
    hartrish Member Posts: 290
    edited April 2018

    kaayborg: did you have any problems with ringing in the ears with carbo? My ears started ringing and it is listed as a side effect of platinum drugs

  • Sharjin
    Sharjin Member Posts: 37
    edited April 2018

    Hartrish: so glad to know that this combo is working so good for you. Hope it keeps working for a long long time and keeps keeping the cancer far far away ❤️

    My mom is dealing with fatigue. She feels so weak that can’t get out of the bed and sleeps almost all day, mostly on the third and fourth day of the treatment. I don’t know how to overcome such extreme tiredness. Last time before chemo, her blood count was good but definitely a bit lower than what she had. I was wondering if blood count went low to make her so tired. Will find out before her 2nd cycle Gemzer only infusion.

    Wishing everyone a great weekend ahead

  • hartrish
    hartrish Member Posts: 290
    edited April 2018

    sharjin: what nausea meds is she on? Compazine makes me so tired I try and not take it during the day. Zofran works well for me during the day. Thought nausea meds might contribute to her feeling fatigued. Definitely chemo does make me fatigue but I am able to be up every day. Hopethis gets better for your mom. Chemo effects everyone so differently.

  • Sharjin
    Sharjin Member Posts: 37
    edited April 2018

    Hartrish: she is not taking any. She had anti nausea medicine before the infusion through the port with Dexamethasone. Doctor gave me some for next two days but she was saying she is not nauseous at all. So I did not give her. I was wondering too whatever making her so tired. During her AC Taxol chemo, she didn’t feel sick at all other than the bone pain from Neulasta. But now she’s tired. This makes me worried

  • Hass
    Hass Member Posts: 1
    edited April 2018

    Hi Kaayborg; I read in one of the thread that you were on just carbo for two years. Are you integrating with diet and supplements as well? Could you share your protocol?

  • minxie
    minxie Member Posts: 239
    edited April 2018

    Finished my second cycle of gemzar/cisplatin last week. Now I have a blessed week off! So far things have been e tolerable. I have the chemo Thursday. Im very tired over the weekend. I also feel like I'm getting a sore throat after each treatment but then it goes away.

    Kaayborg, I hope yourWBR is going ok. Hartrish, glad the carb/gemzar has been working a long time for you- hope I have the same luck!

  • hartrish
    hartrish Member Posts: 290
    edited April 2018

    minxie: glad you are tolerating your chemo regimen well. :

  • sharmal
    sharmal Member Posts: 26
    edited May 2018

    Sharjin, yes we had CT scan report but nothing different was there from the last pet scan. But my mom is feeling much better now...she had second cycle of Halaven chemo yesterday. Thanks.

  • kaylynne
    kaylynne Member Posts: 143
    edited May 2018

    I'm here and started a trial last week. I had a liver biopsy yesterday so we have fresh tissue to send to Foundation One. I like the new oncology group. I don't remember if I told y'all that I have mets to my bones now, so that's liver and bones.Ugh! I'm fighting though just like all of you. Fighting isn't really the right word. I just want to live and die of old age in my own bed.

    God is watching over us all.

    Kaylynne

  • Sharjin
    Sharjin Member Posts: 37
    edited May 2018

    sharmal: so glad to know your mom is feeling better :)

    Kaylynne: praying for this chemo trial to work for you. This cancer is so unpredictable. I wonder why there is anything in the world called TNBC. Why there is cancer? There was a time I only used to know about disease like heart block, heart disease, kidney disease, jaundice, diabetes. These days I think what happened to earth? Why most of the families I know in neighbours, friends and relatives come up with someone who's fighting cancer? Why the diseases aren't simple anymore?

    Sorry for meaningless whining. Sometimes it feels too much.

    Kaylynne, your status brought tears to my eyes. I wish I could give you a hug. Love ane prayers.

  • riley702
    riley702 Member Posts: 575
    edited May 2018

    Kaylynne, I don't like the word "fight", either.Makes it sound like it's up to you whether you live or die.

  • riley702
    riley702 Member Posts: 575
    edited May 2018

    I get another scan on Wed, but don't find out the results until the NEXT Wed. I won't be shocked if something is growing - I've been tired the last few weeks, somewhat dizzy, and having headaches all week. If that's not what it is, I need someone to find out what IS causing it.

  • kaayborg
    kaayborg Member Posts: 576
    edited May 2018

    Sorry so long in posting. Apparently my attempts to cross post from liver mets thread failed.

    I am in my final few months of life and it is hard to know exactly what to do with the time. Still planning to try last ditch effort chemo but it seems quite clear these nasty cells know how to get around it fast. It was only my dear gem/carbo that ever worked for me (FYI...mild ringing in beginning but it stops as months rolled on and no suppliments).

    Not sure how much I'll post in the future but my DH knows to update you. You all have been an incredible blessing to me. Keep up this awesome community that sustains us all.

  • Milwmama
    Milwmama Member Posts: 84
    edited May 2018

    Kaayborg-Have you tried CBD and THC? I have read some people's comments on success with these when conventional efforts failed. Just a suggestion. Take it for what its worth.

    Prayers to you and your family.

  • riley702
    riley702 Member Posts: 575
    edited May 2018

    I'm so sorry, Kaayborg. Much love and hopes for a peaceful passing. That's the ultimate goal for all of us. Go kick the hell out of your bucket list!

  • hartrish
    hartrish Member Posts: 290
    edited May 2018

    kaayborg, I am thinking and will pray for comfort, strength and healing.Hoping the chemo works or another plan comes to mind that you will try.

    Hugs.

  • kaylynne
    kaylynne Member Posts: 143
    edited May 2018

    "CROSS POSTED"

    Kaayborg, I hate to hear this news. I am sending love and ligth and lots of prayers your way. ((big hugs)) I am so glad you went to ST Thomas


    Here's the latest on this stinking disease that has decided to hangout in my body. The cancer has metastasized to my bones. So now it's in my breast, liver and bones. Apparently I have a fracture in my right hip's ball and socket. To top it off, I have a tooth infection. This all happened this past weekend. I woke up Sunday and couldn't walk. I went to the ER and because my immune system was zero, I received 2bags of platelets and a bag of potassium. I dropped the trial because this happened after one infusion. So now I go to the hospital every afternoon this week to get a shot that will boost my white blood cells. I will also receive radiation on my hip daily for 2 weeks so I can walk. In the meantime watch out for the candy apple scooter. Once my blood work is normal I will start another trial but that won't happen for a month to 6 weeks.

    I would appreciate your love, prayers, and light. You all lift me up every day. 💕✨💙

  • 4everStrong
    4everStrong Member Posts: 88
    edited May 2018

    Kaayborg, kaylynne and others.. you are in my mind and thoughts always and all the time.. hugs and prayers for you.. I am behind every single one of you!! you are all stars and worriors and am so happy I came here to hear of your stories, your fights, your nice moments and share with you mine, but ended up writing rarely and reading daily! I find writing difficult and I get a lot energy from reading you all.

    I wish everything was easy but its not.. your last messages are tough to digest but at the same time so inspirational.. all of you are managing in such an inspiring way!


    Kaayborg Kaylynne LOTS AND LOTS of hugs and will be praying for you again.

    Bless you all and may it be easy and smooth at the end for all of us.

  • Sharjin
    Sharjin Member Posts: 37
    edited May 2018

    Kaylynne and Kaayborg, you both are in my prayers. It amazes me how positive you two are towards life. Lots of love, light and hugs for you.

    Riley and Hartrish, how are you two doing? Thinking of you

  • hartrish
    hartrish Member Posts: 290
    edited May 2018

    kaylynne: so sorry about your news. Sendingprayers and hugs your way!

  • UserN
    UserN Member Posts: 11
    edited May 2018

    Molecular Analysis for Therapy Choice (MATCH) clinicaltrials.gov/ct2/show/NCT02465060

  • hartrish
    hartrish Member Posts: 290
    edited May 2018

    Kaayborg’s husband posted on the liver Mets thread that Kaayborg (Missy) passed away this past Friday. I am devastated to hear this news about my TNBC sister. She is such an inspiration to me. Will miss her so much

  • moderators
    moderators Posts: 8,637
    edited May 2018

    sending you and everyone else who is so saddened by Kaayborg's loss many gentle hugs. Medicating

  • riley702
    riley702 Member Posts: 575
    edited May 2018

    I had a really bad weekend. They diagnosed me with brain mets and swelling around the mets and started me on steroid and brain rads. I'm still very shaky, but much better.

  • hartrish
    hartrish Member Posts: 290
    edited May 2018

    riley702: so sorry to hear your news. Prayers and hugs going your way.

  • Sharjin
    Sharjin Member Posts: 37
    edited May 2018

    My heart is heavy hearing Kaayborg’s news. Whenever I needed to get some inspiration, I followed her and talked with her. She was such a great soul, full of life. Can’t believe it happened. Ofcourse she is in a better place now. May Allah SWT be with all of us.

  • Sharjin
    Sharjin Member Posts: 37
    edited May 2018

    riley: so sorry to hear the news. Hope brain rads work wonders for you and kills the cancer cells.

    Kaylynne: How are you doing?

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.