Triple negative; Please help!!!

13»

Comments

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #42
    chilibbq said:

    Home again
    Corrine was released from the hospital late today. Chemo was completed about 2pm yesterday. At this point she only has a little discomfort from a slight fever. She has an appointment to see her omc in a week for tests. At that point her next chemo will be scheduled. We thank all of you for checking in on her as well as your comments, suggestions, thoughts and prayers. Ken & Corrine

    Took the time to really read this chain of emails and I cried
    I am crying from deep down in my heart. What's that saying ?? you can cound your true friends on 1 hand ?? Or as some call it ' fair weather friends'. We live in a society where things are based on instant gradification. If your hungry & tired, call up the local pizza hut, and have your dinner delivered in less than 30 mintues. Need to pay a speeding ticket, wait .. don't go down to the courts, pay on line .. Our lives are fast paced, Cancer treatment is not.

    I too have a wonderful circle of family and friends, and have kept my diagnosis from "non-immediate" family. Self preservation, I guess. My girlfriend, Jackie who was 1 of 2 people at Dr. H's appointment today, called a few hours ago and told me that she was in for the long run ... 1 year, 2 years etc. We laughed and cried .. but I made her promise me that if she grew tried, she could remove herself at anytime ... no questions asked. I gave her this option as I don't really know the extent of my chemo, or treatment. Again, I say .. 'self preservation'.

    Ken .. You are a Saint.. and Kudos to Corrine for nabbing you!!
  • mimivac
    mimivac Member Posts: 2,143 Member
    #43
    Moopy23 said:

    Diagnosis can Affect People's Reaction
    Hi, Ken, I found that everyone I knew from all areas of my life was supportive when I was first diagnosed. In retrospect, I think they expected my treatment to be surgery w/ no further treatment needed. Very early stage DCIS, I suppose, is what they could handle. (Frankly, it's what I could have handled, as well!)

    When they learned chemo and lymph nodes, a lot of people disappeared. Lymph node involvement really diminishes your social circle. At least, it did mine. I was even dis-invited from a child's 2nd birthday party the week of my surgery, when the extent of the bc was found.

    I wish none of us had to go through any of this. But, I've learned who my true friends and family are, and who the really caring human beings are in Joe's life and mine. Think of it as weeding out the chaff.

    My best to Corinne and to you. I am sorry you both are experiencing this pain, but you are not alone. It sounds as if you are blessed with a core group of true friends. And, you found us.

    Moopy that really gets my goat
    I cannot believe you were disinvited from a 2 year-olds birthday party! That makes me incredibly angry for you. People can be cruel, whether intentionally or not. I, too, lost some friends through this. It's sad, but you're right, weeding out the chaff...
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #44
    mimivac said:

    Moopy that really gets my goat
    I cannot believe you were disinvited from a 2 year-olds birthday party! That makes me incredibly angry for you. People can be cruel, whether intentionally or not. I, too, lost some friends through this. It's sad, but you're right, weeding out the chaff...

    I was shocked at that too
    I was shocked at that too Mimi. Very hard to believe that people are like that. But, it does show you who your true friends are. :)
  • Alexis F
    Alexis F Member Posts: 3,598
    #45
    chilibbq said:

    Home again
    Corrine was released from the hospital late today. Chemo was completed about 2pm yesterday. At this point she only has a little discomfort from a slight fever. She has an appointment to see her omc in a week for tests. At that point her next chemo will be scheduled. We thank all of you for checking in on her as well as your comments, suggestions, thoughts and prayers. Ken & Corrine

    Glad she got that one chemo
    Glad she got that one chemo behind her. Good luck with the doctor next week. Hope her tests turn out good! Praying for both of you!

    Hugs Lex♥
  • chilibbq
    chilibbq Member Posts: 30
    #46
    VickiSam said:

    Took the time to really read this chain of emails and I cried
    I am crying from deep down in my heart. What's that saying ?? you can cound your true friends on 1 hand ?? Or as some call it ' fair weather friends'. We live in a society where things are based on instant gradification. If your hungry & tired, call up the local pizza hut, and have your dinner delivered in less than 30 mintues. Need to pay a speeding ticket, wait .. don't go down to the courts, pay on line .. Our lives are fast paced, Cancer treatment is not.

    I too have a wonderful circle of family and friends, and have kept my diagnosis from "non-immediate" family. Self preservation, I guess. My girlfriend, Jackie who was 1 of 2 people at Dr. H's appointment today, called a few hours ago and told me that she was in for the long run ... 1 year, 2 years etc. We laughed and cried .. but I made her promise me that if she grew tried, she could remove herself at anytime ... no questions asked. I gave her this option as I don't really know the extent of my chemo, or treatment. Again, I say .. 'self preservation'.

    Ken .. You are a Saint.. and Kudos to Corrine for nabbing you!!

    Thank you Vicki
    Vicki,
    Thank you for the kind words. Trust me, I am no saint. Just a regular guy in love with a wonderful woman. Corrine has also given me several "outs", saying this was going to be rough on me. Hey, all of you ladies are the heroes. It is your strength, perserverance, positive outlook and faith that give others hope. Not just those afflicted, but caregivers as well. I do not know how to thank all of you for the knowledge and support.
    My prayers to all of you,
    Ken
  • Kylez
    Kylez Member Posts: 3,761 Member
    #47
    mimivac said:

    Moopy that really gets my goat
    I cannot believe you were disinvited from a 2 year-olds birthday party! That makes me incredibly angry for you. People can be cruel, whether intentionally or not. I, too, lost some friends through this. It's sad, but you're right, weeding out the chaff...

    Just wishing Corrine good
    Just wishing Corrine good luck with her chemo.
  • chilibbq
    chilibbq Member Posts: 30
    #48
    Kylez said:

    Just wishing Corrine good
    Just wishing Corrine good luck with her chemo.

    first chemo treatment reactions
    Corrine's reactions to this point have been fairly mild. Chemo was on Tuesday. She was starting to get fatigued and a little sore by Friday. Saturday and Sunday included increased fatigue, slight fever (under 100 degrees), headaches and soreness. The major side effect this weekend was the fatigue. We were able to go to lunch, a little shopping and church. The rest of the time she rested while I just wanted to pamper her. Her perseverance to battle was like a rollercoaster, but she ended this weekend very positive. Tests on Monday or Tuesday (not sure) will tell us how her body is reacting. I believe it is white and red blood cell counts, maybe more, I am not quite sure.
    God bless all!!
    Ken
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #49
    chilibbq said:

    first chemo treatment reactions
    Corrine's reactions to this point have been fairly mild. Chemo was on Tuesday. She was starting to get fatigued and a little sore by Friday. Saturday and Sunday included increased fatigue, slight fever (under 100 degrees), headaches and soreness. The major side effect this weekend was the fatigue. We were able to go to lunch, a little shopping and church. The rest of the time she rested while I just wanted to pamper her. Her perseverance to battle was like a rollercoaster, but she ended this weekend very positive. Tests on Monday or Tuesday (not sure) will tell us how her body is reacting. I believe it is white and red blood cell counts, maybe more, I am not quite sure.
    God bless all!!
    Ken

    Hi Ken
    So glad to hear that Corrine is hanging in there. Thanks for keeping us posted. Sounds like she will do okay with you by her side. Staying positive is half the battle! Tell her I said kudos for making it through round one! ♥ Pammy
  • chilibbq
    chilibbq Member Posts: 30
    #50
    Akiss4me said:

    Hi Ken
    So glad to hear that Corrine is hanging in there. Thanks for keeping us posted. Sounds like she will do okay with you by her side. Staying positive is half the battle! Tell her I said kudos for making it through round one! ♥ Pammy

    Question about treatment/Today's Dr appointment
    Corrine had severe pain in her hips last night (5th day after 1st chemo). It kept her awake most of the night. She had an appointment with her onc today. Corrine was told she would need to take chemo once a week for 24 weeks instead of the original plan of once every three weeks for 24 weeks. The onc said it would be easier on her. Is this weekly treatment any more or less effective than the 3 week treatment? Has anyone else gone through a similar experience? Thanks. Ken
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #51
    chilibbq said:

    Question about treatment/Today's Dr appointment
    Corrine had severe pain in her hips last night (5th day after 1st chemo). It kept her awake most of the night. She had an appointment with her onc today. Corrine was told she would need to take chemo once a week for 24 weeks instead of the original plan of once every three weeks for 24 weeks. The onc said it would be easier on her. Is this weekly treatment any more or less effective than the 3 week treatment? Has anyone else gone through a similar experience? Thanks. Ken

    Sorry Ken, I don't have the
    Sorry Ken, I don't have the answer for you about her chemo. If the oncologist said it would be easier on her, then you have to trust them. It doesn't make sense though. Good luck!
  • jnl
    jnl Member Posts: 3,869 Member
    #52
    chilibbq said:

    first chemo treatment reactions
    Corrine's reactions to this point have been fairly mild. Chemo was on Tuesday. She was starting to get fatigued and a little sore by Friday. Saturday and Sunday included increased fatigue, slight fever (under 100 degrees), headaches and soreness. The major side effect this weekend was the fatigue. We were able to go to lunch, a little shopping and church. The rest of the time she rested while I just wanted to pamper her. Her perseverance to battle was like a rollercoaster, but she ended this weekend very positive. Tests on Monday or Tuesday (not sure) will tell us how her body is reacting. I believe it is white and red blood cell counts, maybe more, I am not quite sure.
    God bless all!!
    Ken

    Saying prayers for you and
    Saying prayers for you and Connie!
  • kathyDDD
    kathyDDD Member Posts: 34
    #53
    also triple negative
    I was diagnosed on Dec. 30, 2008. Happy New Year. I had a lumpectomy on Jan 19. the margins weren't clear and 13 lymph nodes were positive. I was told I was "triple negative." I had to have chemo first and started that Feb 12. My last chemo was June 16. I am a high school teacher and, other than drs appts, did not miss one day of school during chemo. Attitude and a strong support group are absolutely everything. I had 7 different wigs that I rotated and my kids got to pick the personality for the next week. My wigs all had names that matched their personas. My students were among my strongest supporters and kept me going. I had bilateral mastectomies on July 16. Since I had been a DDD and always defined by "the girls," I was in mourning for the person I was. For the next five weeks after the surgery, I would look in the mirror and cry because I looked like a freak show. This past Monday was the first day since Feb. 28 I went out without a wig or hat. My hair is very short, sparser in some spots than others, but I really needed to be me again. It is getting somewhat easier to look in the mirror. I start radiation tomorrow and see a plastic surgeon next week. I have been reading this forum for a few weeks and can't thank you all enough for the courage and insight you have given me. This is not a club I would have joined willingly, but it is definitely a very special group of tremendous people.
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #54
    kathyDDD said:

    also triple negative
    I was diagnosed on Dec. 30, 2008. Happy New Year. I had a lumpectomy on Jan 19. the margins weren't clear and 13 lymph nodes were positive. I was told I was "triple negative." I had to have chemo first and started that Feb 12. My last chemo was June 16. I am a high school teacher and, other than drs appts, did not miss one day of school during chemo. Attitude and a strong support group are absolutely everything. I had 7 different wigs that I rotated and my kids got to pick the personality for the next week. My wigs all had names that matched their personas. My students were among my strongest supporters and kept me going. I had bilateral mastectomies on July 16. Since I had been a DDD and always defined by "the girls," I was in mourning for the person I was. For the next five weeks after the surgery, I would look in the mirror and cry because I looked like a freak show. This past Monday was the first day since Feb. 28 I went out without a wig or hat. My hair is very short, sparser in some spots than others, but I really needed to be me again. It is getting somewhat easier to look in the mirror. I start radiation tomorrow and see a plastic surgeon next week. I have been reading this forum for a few weeks and can't thank you all enough for the courage and insight you have given me. This is not a club I would have joined willingly, but it is definitely a very special group of tremendous people.

    kathyDDD and Ken
    Kathy, I was diagnosed the month before you, in November 2008. How impressive, that you did not miss a day during chemo. The wig wardrobe sounds like a wonderful idea, taking a negative and making a positive. As someone wrote, if we are not positive for hormone treatments, we can still be positive in our attitudes. You are a great example.

    Ken, I have heard of "dose dense" treatments for triple negative cancer, but I don't know any details or the research behind it. Others here may be able to tell you more. I was offered a clinical trial with AC plus T and possibly Avastin, or TAC every 3 weeks for a total of 6 treatments.

    Cancer, more and more, is being treated in an individualized way; it sounds as if that is what is happening with Corinne. I am sorry I cannot tell you anything. I hope that the weekly treatments are effective and tolerable for Corinne.
  • tnbcmom46
    tnbcmom46 Member Posts: 1
    #55
    Hi Ken
    I was dx with tnbc in
    Hi Ken
    I was dx with tnbc in Dec.08 My ONC put me into a clinical trial. 12 weeks AC then 12 weeks
    Taxol followed by 4-5 weeks Radiation. When I first found out that I had tnbc I found a website that has great resources. http://www.tnbcfoundation.org/index.html be sure to go to the resources page and read up on the supplements to take while going thru chemo. AC was easier for me then this Taxol I'm on now. I'm signing up for disability because of the neurophathy. Can't feel my feet and have a hard time walking (look like I'm drunk)
    but the effects of chemo meds can be very different for each person. God Bless I will be adding Connie and You in my prayers.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #56
    kathyDDD said:

    also triple negative
    I was diagnosed on Dec. 30, 2008. Happy New Year. I had a lumpectomy on Jan 19. the margins weren't clear and 13 lymph nodes were positive. I was told I was "triple negative." I had to have chemo first and started that Feb 12. My last chemo was June 16. I am a high school teacher and, other than drs appts, did not miss one day of school during chemo. Attitude and a strong support group are absolutely everything. I had 7 different wigs that I rotated and my kids got to pick the personality for the next week. My wigs all had names that matched their personas. My students were among my strongest supporters and kept me going. I had bilateral mastectomies on July 16. Since I had been a DDD and always defined by "the girls," I was in mourning for the person I was. For the next five weeks after the surgery, I would look in the mirror and cry because I looked like a freak show. This past Monday was the first day since Feb. 28 I went out without a wig or hat. My hair is very short, sparser in some spots than others, but I really needed to be me again. It is getting somewhat easier to look in the mirror. I start radiation tomorrow and see a plastic surgeon next week. I have been reading this forum for a few weeks and can't thank you all enough for the courage and insight you have given me. This is not a club I would have joined willingly, but it is definitely a very special group of tremendous people.

    Hi Kathy. I want to welcome
    Hi Kathy. I want to welcome you to the site! Sorry for the reason that you are here.

    Hugs!
  • chilibbq
    chilibbq Member Posts: 30
    #57
    tnbcmom46 said:

    Hi Ken
    I was dx with tnbc in
    Hi Ken
    I was dx with tnbc in Dec.08 My ONC put me into a clinical trial. 12 weeks AC then 12 weeks
    Taxol followed by 4-5 weeks Radiation. When I first found out that I had tnbc I found a website that has great resources. http://www.tnbcfoundation.org/index.html be sure to go to the resources page and read up on the supplements to take while going thru chemo. AC was easier for me then this Taxol I'm on now. I'm signing up for disability because of the neurophathy. Can't feel my feet and have a hard time walking (look like I'm drunk)
    but the effects of chemo meds can be very different for each person. God Bless I will be adding Connie and You in my prayers.

    Update on Corrine
    Since this has gotten so long I started a new thread "update on Corrine"
  • djteach
    djteach Member Posts: 273
    #58
    chilibbq said:

    Thank you everyone!
    I am overwhelmed by the responses I have recieved from so many people.
    Joe, I am so glad you responded. Much of what I read last night was about you, your beloved Moopy and Mimi as well. Late last night after posting I did get a call from Connie. We talked and cried until wee hours of the morning. I emailed her the link of the posting you made explaining triple negative (I also read it to her) I think it helped her quite a bit. As a matter of fact, she was on this site this morning. We talked about the network of support she would need during this process; expanding it from the current friends, family and church to local support group and this web site for starters. Right now, especially yesterday, it has been overwhelming for us.
    I placed Mimi and Joe on my friends list in hopes that if we need one-on-one, someone would be there. However, after these responses, it looks like there is much support. Lex suggestted I look at threads for caregivers and emotional support. Thank you, it is one of the things I have been looking for. I have been doing research and reading; finging out what to say and what to do. More importantly I have found out what not to say and what not to do. But I have much to learn, this is a great place!!
    Connie and I have known each other for 8 years, when she glows, I smile. When she laughs (and snorts) I am happy. When she hurts,I am crushed. She is the love of my life! I have always been the "fix it guy", this I cannot fix so I need to think in a different mind set.
    Than you and God Bless each and everyone of you.
    My prayers are with all of you.
    Ken

    Dear Ken,
    I watched my
    Dear Ken,

    I watched my father go through what you are going through about "fixing" it. Dad said, that's what men do, we fix things. He was able to talk about how helpless he felt. I told him that I could not get better without his love, support, and humor. His job, he decided was to keep me laughing and he did it well. You will still be her "fix-it" man, just in a different way now. Love is the most important thing and it sounds like you both have that for each other. You 2 can conquer this beast, I know it.

    Love and gentle hugs,
    Donna

Discussion Boards