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Low WBC on Taxol/Carbo

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SuzyQ92 View Drop Down
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    Posted: Nov 10 2020 at 4:51pm
Iíve lately just been going on this forum and searching for those in a similar situation but Iíd like to ask my own question and share my experience a bit. I finished AC with minimal side effects. Iím now on Taxol once a week for 12 weeks and carbo once every three weeks. I was excited for taxol cuz I heard itís even smoother than AC is but Iím finding taxol to be throwing me in a complete stressful mess. Two times so far my chemo has had to be delayed for low wbc. They decided to put me on neupogen shots three days a week which worked a few weeks, but this week after carbo 3/4 and taxol 7/12, the neupogen didnít help elevate my numbers. They dipped from 1.8 to .7. My onc didnít want me to miss any more chemo so she said letís just do it with this low number and have me really careful and give me 4 neupogen shots... I just really really hope this week itíll lift back up as Iíve seen it do once or twice. I am so bummed out by how helpless I am in this and really donít want to have to delay any more and finish this. Just 4 more to go!!Anyone else have a similar story or advice for me?

28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.
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pawwjw View Drop Down
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I've been on the Neupogen injections (3) 2 different times during the taxol round. I have 3 more scheduled cycles of taxol. Neupogen did work for me. The first time it boosted my WBC enough for 3 weeks. Too soon to know how well it does this 2nd time. I hope you can stay on schedule; that is frustrating especially when all we want to do is to finish treatment so we can move on. But this too shall pass.
I did ok with taxol until #9. I have mouth sores and the build up of the chemo is making me very tired. My Dr. is concerned about neuropathy (I do not have any symptoms) and may have me stop chemo (I have 3 left) and do surgery sooner rather than later. My biggest stressor is having a lumpectomy + radiation or a bilateral mastectomy.
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do they also have you in carbo? For me I am on the neupogen every week. I had a couple good weeks where it worked perfectly but this last week it kept decreasing which is scary and discouraging. Iím wondering if it has anything to do with the carbo since my doctors told me this is usually not the case for most on taxol. Hmm so he is concerned about neuropathy but you donít have symptoms of it? I do not currently really have symptoms of neuropathy myself!This journey is different for everyone and the options so personal!  Iím sure you can feel in your gut what you feel is right for you. I think you need to pick the option that will make you the most comfortable and confident and you know in your heart is right for you so that you donít always have regrets no matter who you are worried may judge your decision. I hope you can make a decision that makes you happy! :)
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)

4AC 12Taxol 3Carbo (07/16/20)

To be done: BMX, Possible DIEP Flap, Eventual Oopherectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2020 at 11:27pm
Dear SuzyQ92,

Your bio on the bottom of your post went straight to my heart/soul. I pray that someday the world will look vastly different for a BRCA+ woman with breast cancer but the situation today is that the gold standard of care for you is unfortunately a BMX and oophorectomy down the road. Some day, things will hopefully be different; for now, it is what it is.

I am writing to you to offer you some encouragement. It may not seem that way when you first read this but please stay with it. Some personal background-when I was two years old my maternal grandmother, at the age of 46, was diagnosed with Stage IV ovarian cancer and she died 4 months later. The BRCA mutation was unknown at that point. I was 2 years old at the time (1946) and all I have is one picture of her holding me when I was about a year old and her love for me was palpable but unfortunately, I don't remember her. She was 19 years old when she gave birth to my adored Mother, who was diagnosed in 1959 with breast cancer when my Mom was 41. Still no knowledge of the BRCA mutation and chemo was in its infancy so my Mother had a mastectomy and radiation therapy with no chemo. She developed metastatic disease about 3 years into her awful journey and died in 1964 when she was 46 and I was 20. She was a single Mom and she was my best friend. At the end of her five year battle I was so beat up emotionally that I think I was 30 or 35. I was her patient advocate and caregiver. And throughout her journey she worked full-time and managed to keep guiding/loving me no matter what discomfort she was in. Some 40 years later, in 2004, my daughter, at age 36, was diagnosed with TNBC. Her tumor size was 1.6 cm and she also had no lymph node involvement.

She was not advised to test for the BRCA mutation despite her profound family history of breast and ovarian cancer on my side of the family. She was advised to have a lumpectomy and then do chemo. Turns out her breast surgical oncologist was a 
'conservationist' and did not recommend to any of her patients that they do genetic testing because she did not believe in BMX. So she had surgery and then 4 months of ACT.
During her chemotherapy I found out about the BRCA mutation and my daughter tested positive as did I. After her chemo, and once she understood what the BRCA mutation entailed, she decided at age 37 to have BMX and also had gynecologic surgery because the genetics expert told us that "we are seeing a lot of ovarian cancer in women in their late 30's." 

Suzy, I am not sure what saved her life but here we are 18 years later and she is cancer-free and healthy. 

So, I know some may read the above as a very sad story and it is, BUT we now have a lot more knowledge about the BRCA mutation than we did when my Mom was diagnosed and a lot better treatment. Suzy, hopefully, you will be able to live a long life and be cancer-free.

I did the following short video of Genetic Alliance and I am posting it with their permission. I believe it was done about 10 years ago. Genetic testing ten years ago was not nearly as popular/well known as it is now and I wanted to get the word out that men could carry the BRCA mutation and Genetic Alliance actually used the video I participated in to train physicians. We also now have the knowledge that there are other mutations that can be deleterious and cause breast cancer.

https://www.youtube.com/watch?v=CQrQMY2w05k

I became a patient advocate when my daughter was diagnosed with TNBC. I have helped many hundreds of women on this site over the last 11 years, some with the BRCA mutation but many, more, without it. Approximately 70% of women with the BRCA mutation have TNBC when they have breast cancer but the converse is not true. 70% of women with TNBC do not carry the BRCA mutation.

Suzy, if you would ever like to talk with me, I would like to do that. Maybe I could be a resource for you, somehow, someway, although I will never give you medical advice as I am not a medical professional. But I may be helpful, if you ever want a second opinion from a Breast Medical Oncologist who is knowledgeable about TNBC or would just like to talk. 

You can send me a PM and I will send you my phone number or you can email me at

steve@sagepatientadvocates.org

Everything we talk about will remain confidential and there are no charges.

I wish you the best of luck in your journey and I think you gave pawwjw excellent advice about her 'following' her heart. And of course I wish you, pawwjw, the best of luck, too, as I do for everyone here.

with my love to all here,

Steve


Edited by SagePatientAdvocates - Nov 10 2020 at 11:29pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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SagePatientAdvocate it is so nice to hear from you. I have read this forum without posting and involving myself for 5 months now since my diagnosis. I have always seen your messages to others on here and have read them in full because you are always so encouraging and informative in your responses. It is so hard to find those online who are staying positive about this disease but itís so important! So many times I go on forums looking for comfort to hear a story of someone who was doing fine and two years later had mets somewhere in there body and every time I canít help thinking if itíll be me before I even reach 30. But every once in a while I read a positive story such as that of your daughter and I have a little glimmer of hope again. 18 years!! Wow! Thatís incredible. Thank you for your bolded sentence that gave me a little boost tonight on a night I was feeling a bit down! It is possible to survive this disease and I hope along with all those others stories I hear on here that we all can! 

In regards to the BRCA part of the conversation it is unfortunate for sure. I am trying to stay positive about it though in knowing really I had about an 80% chance of this happening to me in some point in my life, almost inevitable, and when it did come I was able to catch it early because of my diligent self checking. My Father passed away from hodgkins when I was 10 and his mother of breast cancer before I was even born so even though I had heard of BRCA, I didnít think of testing myself since only one person on either side had breast cancer but here I am hoping to be a lesson for girls to always self check and to get tested even if as you said some providers may still not see it as a necessity. Thankfully my breast surgeon who is the one to have diagnosed me instantly sent me for testing for BRCA after seeing my age and that it was TNBC. I see now thatís sadly not the case for everyone! I feel way more knowledgeable about my choices now and confident in them knowing my genetic makeup. Sure I do not want to get rid of both my breasts and my ovaries and at a young age be thrown into menopause but we do what we need to to survive right? 

Thank you so much again for reaching out. It meant a lot to me and I will absolutely get in touch at one point if I have a question which Iím sure I will more than likely soon have! 
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)

4AC 12Taxol 3Carbo (07/16/20)

To be done: BMX, Possible DIEP Flap, Eventual Oopherectomy
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And also I forgot to mention how sorry I am about the loss of your grandmother and mother whom you were so close to. I cannot even imagine the pain you felt and probably still feel from your loss. Iím sure she would have been proud to see all the wonderful work you are doing on behalf of her, your daughter, and all those who have had to deal with this disease and those who have had to deal with the effects of their BRCA mutation. Keep up the good work!

Edited by SuzyQ92 - Nov 11 2020 at 12:07am
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)

4AC 12Taxol 3Carbo (07/16/20)

To be done: BMX, Possible DIEP Flap, Eventual Oopherectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pawwjw Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2020 at 2:11pm
Suzy,
No, I am not on carbo. This whole journey is frustrating and is an emotional roller coaster. I hope you are able to stay on your chemo schedule. My oncologist is actually a breast cancer survivor and suffers from neuropathy so I think that is why she is so concerned about it for her patients. She is a wonderful Dr. I have 2 more taxol treatments to go. My WBC decreased this week which I expected so I am getting the 3 neupogen injections again. My MRI last week showed chemo is working and my tumors have shrunk 92.6%. My surgery is 12/23. I haven't made a decision yet...it is a tough one. Be safe and stay healthy.
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that is so wonderful to hear about how great youíre treatment is working for you! Hope all goes well and youíre able to make the decision that makes you feel confident. I know itís a hard decision. For me personally Iíll say even before I found out I had the BRCA gene, I was leaning towards the bilateral mastectomy for peace of mind. Just knowing I had so much less breast tissue to be effected made me feel more at ease and peace of mind is such a nice thing to have in the middle of this. But neither is a right or wrong option, just whatís going to best for you personally. Be safe and healthy as well! 
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)

4AC 12Taxol 3Carbo (07/16/20)

To be done: BMX, Possible DIEP Flap, Eventual Oopherectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2020 at 6:02pm
Dear SuzyQ,

somehow I missed your two posts on November 10th until today. I want to thank you for your very kind words. Means a lot to me. 

If my maternal grandmother has passed when I was older, I am sure I would have been devastated emotionally as I was when my Mom died and to a certain extent I still am. Even though so many (56) years have passed, at various times the pain is excruciatingly
acute regarding my Mom, especially on Thanksgiving, her favorite holiday and it remains mine.

One of the problems was that my Mother very rarely talked about her Mother. My grandmother was 19 when she gave birth to my Mom and was 47 when she died of ovarian cancer. It turned out that my Mother and Grandmother were more like sisters than mother/daughter and my mother could not speak to me about her Mom without crying so I learned at a young age not to ask her any questions. I think back that for the first 40 years after my Mom's death that I, too, could not speak my Mother's name without crying.
It was only after seeing a psychotherapist that I could manage. My grandfather lived the rest of his life, after my Mother's death, from 65 to 96 and would cry every time he mentioned her name. Two days after her death, my grandfather and I walked for about ten miles in silence. Then he stopped and his voice choking told me "Stevie, I know how much you ache losing your Mom but I can tell you that the worst pain known to man is to lose a child...and I can tell you that that is true and I pray you never experience that." I have six children and six grandchildren and I have often thought about my grandfather's words. 

To all reading this, sorry, to have gone down that road especially with my daughter being a 16 year TNBC survivor and cancer-free. SuzyQ, somehow your post triggered emotions that are sublimated but not that far away. You are a very insightful young woman and I am very impressed with the wisdom you have and the kindness you express to others. Welcome to our TNBC Family and may you have decades upon decades upon decades etc. etc. in good health. 

The marvelous thing about this site is that we can all write and express our feelings and it is understood that it will be met with gentleness and understanding. It has been a blessing for me to be able to write from my heart. 

with my love to all here,

Steve







Edited by SagePatientAdvocates - Nov 16 2020 at 8:47pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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