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Sunris
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Posted: May 28 2009 at 1:09pm |
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Hi Laurie,
I am grade 3 which I saw Pam's reference to the fact that most TN are. I had treatment # 9 today of 12 of the Taxol. Side effects for me personally so far have been obviously hair loss! DARNIT!! Fatigue, bone pain/aches, and as of a week ago, neuropathy. So far all of these have been extrememly manageable. The advantage I believe in the 12x does vs. the 4x doses is the fact that each dose is a lesser amt therefore likely
reducing the severity of the side effects even though you may have side effects. I will start my FAC approx. the first week of July, I believe...I'm kind of thinking she is going to give me a couple of week break in between the chemos. As of today, my white blood counts are pretty low and will likely continue to drop ( following the trend on my test results each week) so I'm sure I will need my counts to be back UP before starting the FAC.
I hope your sister is comfortable / confident with her choice to go to MD Anderson. There are so many great people there, not just medical staff, but patients as well.
You are such a source of strength for yourself as for your sister. I know she is very grateful to have you.
*Hugs & positive vibes*
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 Dawn Age 43 at DX DX 3-09 IDC 3.9cm TN-Stage2-Grade3 Taxolx9, FACx2, halted TX, Lump.8-25-09..rads x 8wks.
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Donna Zukowski
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Joined: Apr 28 2009
Location: MD Anderson
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Posted: May 28 2009 at 2:29pm |
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Thank you Pam and Dawn. I will check the resources out tonight. No it is definitely not lung cancer and they have looked thoroughly for that. This is a biopsy of the breast cancer and cancer does not mets to the breast, is what I was told. I just hope if is not even worse and am just abit scared to look. Donna
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trip2
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Joined: Jun 03 2007
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Posted: May 28 2009 at 2:47pm |
Donna,
That is all I find when googling is for lung cancer.
Could it possibly be chest wall?
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Donna Zukowski
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Joined: Apr 28 2009
Location: MD Anderson
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Posted: May 28 2009 at 3:05pm |
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I know Pam. This has been nagging at me as well. No it is not chest wall. At least on the MRI it says it is not in the chest wall. I see the surgeon on Mon so will ask as he will likely be able to tell me. I only get lung cancer googling what the pathology says. It is actually the pathology from the lymph node. The breast biopsy does not say anything about non small cell or basal or anything. Is that odd? Donna
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LaurieP
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Joined: May 27 2009
Location: New York City
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Posted: May 28 2009 at 4:38pm |
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Dawn, Keep at it! I'm sorry for the discomfort but I know you know it is worth it. My sis is very glad to be so near MD Anderson. It is all new to her but I am confident she will get into a routine.....not that I wish that on her but I remember it from my cervical days! It is better than the newness and the fear.
All of you who go through this journey are brave women...fighters. My heart goes out to you.
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trip2
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Posted: May 28 2009 at 5:20pm |
LaurieP your experience plus love will be a huge support for your sister. She is lucky to have you.
Keep us updated,
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Stage 2 2003
Stage 1 2007
BRCA 1+
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trip2
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Posted: May 28 2009 at 5:22pm |
Donna, no I doubt that info would be on your breast pathology.
The basal aspect of your tumor would require a separate test. Most of us do not have that test.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Cebo
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Joined: May 13 2009
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Posted: May 29 2009 at 11:52am |
Hi Laurie--I'm a little late in replying but wanted to welcome you and let you know that my sister is my best friend too - she was diagnosed with TNBC in Dec 2008, completed chemo at the end of April, and is halfway through her radiation treatment. It was quite a blow when I learned she was Triple Neg--something I told her and discovered through my own research, by the way, before her doctors did. Anyway, I have found this site to be a great source of information and support, something I think you have already discovered. As others have said to me before, and I am sure you agree, there is nothing so fierce and devoted as a sister fighting for her sister! Best of luck to you and your sister on this journey--I look forward to hearing about your sister's progress through this forum.
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Sister DX'ed 11/08
Lumpectomy & SN biopsy 12/08
1.1 cm tumor, node neg (0/2)
Stage 1
DD A/C x 4, Taxol x 4, completed 4/17/09
33 rads (incl 8 boost), completed 6/22/09
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LaurieP
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Joined: May 27 2009
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Posted: May 29 2009 at 12:11pm |
Thanks so much!
This forum has been so supportive and helpful!
Looking at your sister's diagnosis, how does one have lymphovascular invasion with node neg?
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Houston
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Joined: May 16 2009
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Posted: May 29 2009 at 12:21pm |
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I start my treatments next week at MD Anderson and the plan is 12 weekly treatments of Taxol followed by FAC every 3 weeks for 12 weeks.My impression is the Taxol is a treatment with fewer side effects than the FAC. Is this true/
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DX 5/5/09
Stage 1, Grade 3
lumpectomy 5/18/09
12 Taxol, 4 FAC, 6 weeks rads
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Cebo
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Posted: May 29 2009 at 4:56pm |
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Laurie, the way it was described to us is that there was evidence that the cancer cells were "scratching at the door" trying to get out and on their way to nodes/vessels, but supposedly had not yet gotten there--not sure how they see that in pathology, and I really should get that clarified.
Edited by Cebo - May 30 2009 at 2:03pm
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Sister DX'ed 11/08
Lumpectomy & SN biopsy 12/08
1.1 cm tumor, node neg (0/2)
Stage 1
DD A/C x 4, Taxol x 4, completed 4/17/09
33 rads (incl 8 boost), completed 6/22/09
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LaurieP
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Posted: May 29 2009 at 5:43pm |
Cebo,
Thanks for explaining. I don't know what my sister's path says. So far they can't find anything anywhere else so I am glad for that. I'm just going to believe that your sister has stage 1. I agree that the waiting is cruel and we need to hold onto what we can, no matter how difficult it seems at times. And, we need to trust in the oncologist because they have "been there, done that" and don't have the emotion override that we do.
Is your sister nearby?
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sister DX 4/29/09
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outnumbered
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Joined: Feb 02 2009
Location: New Jersey
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Points: 525
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Posted: May 29 2009 at 7:09pm |
Hello to all you newbies...I am sorry you have cause to be here. I also think it is really awesome that you are here to support your sisters. I do not have a sister, so you guys make a great substitute!!!!
Cebo, two 4mm nodules were found on my lung in January as well. I have been told that if it is anything, which they are confident it is not, I will develop symptoms. It really does not matter if lung mets are found now or later. Once its there, its there. It does sound pretty cruel to me also, but I have learned to let that one go. They are not even following up with additonal scans. I was told very often scans on a stage 1 person like me turn into a wild goose chase. One month I might have a lung nodule, then if I were to follow up in 6 months, it might be gone and then something might show on my liver, then I could follow up on that down the road and someting else might be seen, yada, yada, yada. I was told radiologists need to report every single thing, even if it is a finding that is nothing. So, I am not insisting on another scan. I am trying to live in today and to try not to live in the fear. Stage 1 works for me right now. I will confess, though, I woke up the other day from a nightmare where I was diagnosed with lung cancer. In the dream they were were about to tell me if it was a met, or if it was new lung cancer. Then I woke up. I was truly in a panic when I woke up. It seemed so real.
Ok, time for bed. My hubby is at ASCO so I am doing the single Mom thing and I need some sleep.
HUGS!!!!
Edited by outnumbered - May 29 2009 at 7:15pm
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Donna Zukowski
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Joined: Apr 28 2009
Location: MD Anderson
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Posted: May 30 2009 at 4:21am |
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Hi everyone. On my CT scan there was a shado on my T10. One oncologist said he was not going to chase it because it was too small to biopsy anyways. Every article I read about a "lytic shadow on T10" inidcated mets and that this is a likely place etc etc. My breast oncologist is very thorough so did an MRI. I had it done on a Fri evening and did well over the weekend managing to hold it together. I did not have an appt with the breast oncologist until Thurs. By Tues I could not eat as it just washed over me. I did not do well with the whole diagnostic time period. I imagined the worst, dreamt about it, lost weight etc. So Tues I walked down and requested a copy of the MRI results not expecting to get them from medical records. They gave them to me. It was a hemangioma whcih is a birthmark on my spine. I am glad we know what it is. I also thanked God I was stage 2b. I know this could change with one diagnostic test down the road. This is what we live with. But right now I am thankful to be where I am and like sara trying not to live in fear. I am reading a good book called "Picking up the Pieces" it is a little early for me as I am only halfway through chemo but I am feeling like I want to pick up some of the pieces in my life. I have to figure out how to put my demographic profile in.
Donna Stage 2b TN, 1.6 cm. 1 lymph node for sure 12 weekly taxol done, start FAC June 4th Surgery and maybe rads after FAC
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cg---
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Joined: Jul 20 2007
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Posted: May 30 2009 at 5:08am |
Dear Donna,
I live in Ontario and in May 2007, at the age of 53, I was diagnosed on biopsy to have TNBC. I was denied neoadjuvant chemotherapy because the tumor was "too small" at 3-cm. I had 3 positive lymph nodes. I went into the States to have second opinion, and baseline scans (they would not do them here). I tried hard to get weekly protocol (you guessed it - they would not do it here). I wanted you to know that at the time of diagnosis and treatment it is almost like an out of body experience, but once the treatments are finished all everything seems to come together and you will regain your life again. Your life is now just on loaner to the treatment protocols for a short time. I certainly hope that you will be able to pick up the pieces faster and easier being comforted by the fact you are receiving care at M.D. Anderson and have the reassurance of knowing if the treatments are working and the opportunity to change the 'game plan'. For the others who did not have the neoadjuvant chemotherapy - it was a little bit more difficult picking up the pieces of our lives with our fingers crossed hoping the adjuvant chemotherapy worked!
I have family and friends in White Rock and Vancouver. Where were you do your nursing?
Connie
T2 N1 M0
3-cm tumor, 3 positive nodes
Left-sided mastectomy, dose dose AC + T, 25 rads (fought to have this also - because it was against their policy).
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Donna Zukowski
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Posted: May 30 2009 at 5:46am |
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Hi Connie. I am a nurse manager (I prefer the term leader) in Kelowna. I have lots of years of ICU experience as well as street nursing. I had a similar experience but different (as in very disempowering) as you upon diagnosis. You would not believe what happened! Hence my reason for immediately coming here. I sometimes feel like I have PTSD from the experience. I will fly back and forth to complete the treatment plan here at MD Anderson. If you know how to email me on my home email I can let you know what my experience was. I have worries about the care women get in
Canada. Especially in smaller centres. I know there is no emotional
care. I do not know what other centres experience but I have a
colleague who is working on her Masters in the area of the diagnostic
cascade and women's experiences with breast cancer. She is in Canada. It is definitely
disempowering. Some centres I believe are very good as well though. I
am doing a practicum for my Masters in June. I hope I can handle it.
They are an amazing group of nurses. I arranged all of this before Christmas. Plus it is one hour from where my son is in Comox doing his search and rescue SARTEK with the military. Anyways these nurses are the kind of people who will embrace me and all I am going through. I know they will be gentle and caring. It will be me who will be hard on myself and if I am sick I will have to to do everything to be gentle and caring to myself. As this is a priority and if I have to let this learning experience go then something else will come up when I am stronger. So far all of my blood counts have held up amazingly. My Hgb has only dropped by 1 gram from 132 to 120 or 13.2 to 12.0 depending on which system you are on. My WBC remain in the normal range. I eat a big spinach salad everyday, lots of chicken and lots of yoghurt and fresh fruit. Even liver once a week. I have no idea if this helps. I have heard the FAC knocks your HGB and WBC down. Anyways I am rambling on.
Donna
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Cebo
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Posted: May 30 2009 at 8:47am |
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Sara, thanks for letting me know your experience--my sister was told pretty much the same thing you were told (both that a lot of things can show up that could make you crazy in terms of follow up, and that it is "probably" nothing to worry about.) It is the aggressive tri-neg that is doing the number on me. I am hoping for the best and slowly learning not to become preoccupied with things I can't do anything about--I will just continue to be hopeful and pray these nodules are benign. I know there is a very good chance they are, so I'm going to go with that!! Take care!
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Sister DX'ed 11/08
Lumpectomy & SN biopsy 12/08
1.1 cm tumor, node neg (0/2)
Stage 1
DD A/C x 4, Taxol x 4, completed 4/17/09
33 rads (incl 8 boost), completed 6/22/09
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Cebo
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Location: New Jersey
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Posted: May 30 2009 at 9:00am |
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Hi Donna--I am so glad your test result was good--I understand the docs not wanting to chase every little thing, but I do wonder whether this attitude makes as much sense for women with TNBC. In the majority of cancers, the cancer is slow growing, so it may be you can watch and wait; but with TNBC, if you wait for symptoms, it can be too late! But I know that for now that is all we can do, so we will wait and I will continue to pray.
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Sister DX'ed 11/08
Lumpectomy & SN biopsy 12/08
1.1 cm tumor, node neg (0/2)
Stage 1
DD A/C x 4, Taxol x 4, completed 4/17/09
33 rads (incl 8 boost), completed 6/22/09
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Donna Zukowski
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Location: MD Anderson
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Posted: May 31 2009 at 3:41am |
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Hi Connie. Your private mailbox is at it's limit and tried to send a message this morning but it disappeared and said not sent mailbox maxed out. Donna
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cg---
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Posted: May 31 2009 at 5:03am |
Good Morning Donna,
Thank you for the notice about the mailbox.
Connie
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