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strongtogether View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 9:46pm
 
I hear you Laura.
I'd say 12 weeks over the dose dense. Who cares? It's only four more sessions. Peripheral neuropathy is not nice. I dont want to do anything if it's not linked to better outcome.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2019 at 12:33am
Hi Laurarev,

I haven't signed onto the forum in a while but have been catching up tonight with all the posts. Iím wondering if the pain youíre having in your back is sort of similar to muscular- but deeper and like a throb. I had shingles both times I had chemo in 2009 and again last year. My doctors thought i had pulled a muscle and didnít realize what it was until I actually broke out in the rash after about a week or more of deep throbbing pain. Just something it could be. It sounds like youíve had a very rough start and Iím hoping things will go better for the remainder of your treatments. 

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2019 at 9:44am
Hey Blair!! They figured out that awful rash you had was shingles??? That's awful! But you were so miserable it totally makes sense. I seem to remember you suffered with that rash for quite a while and they didn't know what it was?? That's just a nightmare. 
I wonder if they could give us the shingles shot before chemo like they do flu shots or tetanus shots? The latest shingles shot is  supposedly 91% effective. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Noahmom Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2019 at 4:37pm
Has anyone else had their oncologist not recommend a pet scan?I have just completed chemo following a bilateral mastectomy. I was stage 1, 1.5 cm, no lymph node involvement. I am nervous about not having a pet scan but my oncologist says they are not needed with stage 1. Any thoughts?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Noahmom Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2019 at 4:41pm
Has anyone else had their oncologist not recommend a pet scan?  I have just completed chemo following a bilateral mastectomy. I was stage 1 tnbc, 1.5 cm, no lymph node involvement. I am very nervous about not having a pet scan, but the oncologist says they are not necessary for stage 1. Any thoughts?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2019 at 5:18pm
Your oncologist is right from a oncology point of view. There is virtually no chance of metastatic disease in your case. From a mental health perspective, I think that you might as well get the scan because it will be so comforting for you to see the result. 
Sending you love and strength.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2019 at 5:31pm
Noahmom,

Unfortunately the guidelines are no scans unless you are having symptoms.  Some oncs will do routine scans.  If you look at my statistics, I was the same as you.  Stage 1, clear nodes, clear margins, bilateral mastectomy.  My onc believed in scanning her TNBC patients once a year for the first 3 years.  It's how we found my recurrence 12 months after finishing treatment with a PET scan. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2019 at 4:32pm
Hi Kelly! 
Yes, it was shingles again. I had asked my family doctor after the first time for the vaccine but he said no. This time considering the new vaccine he said yes so I had it. Itís 2 shots a few months apart and he believes itís more effective than the old one. I guess because you wait 3 months before the second shot it wouldnít fit with a chemo timeline. 
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliezgay Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2019 at 11:12pm
Hi Everyone, my name is Julie. Dx w/ stage 3c in April. Just finished up with chemo. 4AC & 4 Taxol. To me, chemo was brutal. I still have neuropathy of hands & feet. Muscle/joint pain different throughout the day. Chemo brain is a real thing, still having that. My nails separated from the nail beds, and are awful looking, but do not hurt any longer. Scheduled for lumpectomy & axillary node dissection in Sept. Follwed  by 7 weeks of radiation. My question is, do people with TNBC really make it to the 5 year mark? I know it is very aggressive, and most likely to come back else where. Just wondering? Is there a special diet we should be on? I finally have my tastebuds back, just wondering? Thanks
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliezgay Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2019 at 11:17pm
I had to have neulasta for all 8 of my treatments. 4 AC & 4 Taxol. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliezgay Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2019 at 11:30pm
I would most definitely ice my fingers. My nails turned black/blue then separated from the nail beds. It happened while on Taxol but I know the Ac contributed to it as well. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2019 at 3:13am
Yes Julie, they really do.
Stay strong and dont stop believing. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote S4TNBC_MET10Liver Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2019 at 6:30am
Hi All,

I had my wife diagnosed with stage 4 TNBC with a met on Liver in late Sept 2019, and we started getting chemo after couple of tests. She is 32 yrs old, and we have a 4 yrs old daughter.

respectively, after biopsy from her breast, pet/ct showed another lump in her liver which was evaluated as a secondary of x CA. Our oncologist did not suggest a second biopsy to liver, instead we started chemo for every 3 wks(8.8.2019). Besides sizes of lumps are 1.8 cm in her right breast > 1.5 cm in liver.

there are 2 suspicious point that i'm concerned:

1. size of secondary almost same as primary.
2. no lymph, or any other part involvement was present on PET/CT.

I'd be grateful to hear if anyone else with similar condition. 

PS:I'm non-native speaker of English, sorry for typos.

Thanks in advance.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2019 at 12:12pm
S4TNBC,

I'm so sorry your wife is dealing with this diagnosis.  Glad you are reaching out to support her.  What type of chemo is she on?

I'm not sure why they did not biopsy the liver.  I know it's not an easy procedure and maybe they thought it's better to get started on chemo and see how both tumors react, hoping to reduce the size or erradicate it.  I learned with my recurrence that not all tumors drain to the sentinel lymph nodes.  About 95%-96% do, but other tumors drain elsewhere to other lymph nodes or vascular system.  Your wife could be one of those statistics where it drained elsewhere in the body but her lymph nodes were clear.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2019 at 12:16pm
Originally posted by Juliezgay Juliezgay wrote:

I would most definitely ice my fingers. My nails turned black/blue then separated from the nail beds. It happened while on Taxol but I know the Ac contributed to it as well. 


Hi Julie,

Have you had any issues with your toenails?  Mine lifted during chemo, but never lost them.  I did get a common fungal infection (onychomycosis) which can occur when the nail is damaged or exposed. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote S4TNBC_MET10Liver Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2019 at 7:17am
Hi Donna,

Thanks for your response and time. I'm not sure about status of your disease I hope you already left it behind (if not yet, hopefully very soon). 

Actually we consulted 3 different oncologist and only one of them suggested biopsy to liver. however he requested biopsy to breast as well (second time), that's why we simply ignored him. 

Last oncologist that we decided to continue the treatment with, said similar things as you said. He will examine the progress (probably via mri or pet/scan or else not sure) to see results of drugs, and additionally said that about tumor on liver, "this is a secondary tumor (not a primary liver tumor) and you already have diagnosed with a primary in your breast, so there is very little possibility to have another primary elsewhere and another biopsy may mean waste of time". which made sense to us. However as you know, when you take sometime to think, the idea of missing any detail is brain twister.

Anyway,  she had one cure and have second tomorrow. I think it is called EC, the names of our drugs are Farmorubicin (epirubicin) and Endoxan (cyclophosphamide). 

Thank you so much.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2019 at 8:30pm
Hi Laura,

I came across your post and wanted to chime in about the food questions. I was able to see an integrative oncologist who provided me with a lot of information, especially diet. His suggestion was to follow the Andrew Weil inflammatory food pyramid, which really focuses more on what you should eat than what you shouldn't. It emphasizes eating the "color of the rainbow" and small protein portions. I do not consume alcohol anymore or sugar. I also try and stay away from flours which turn into glucose. I feel like sticking mostly to this diet helped me immensely with energy. The entire time I was going through chemo people didn't believe it, except for the loss of my hair, because I looked so healthy. 


I have yet to find a TNBC resource for food, but he also provided me with several studies about which foods help fight cancer cells and support the immune system. At the top of those studies where the below foods. Now, in addition to a green smoothie/juice, I try and eat most of these foods everyday in a large salad, except for the garlic which I just include in everything I can and occasionally will chop up and swallow. 

Garlic 
Leeks
Onions (green, white, yellow, red)
Broccoli & Broccoli Sprouts 
Red Cabbage (or green)
Cauliflower 
Kale
Radish
Spinach 
Beets
Carrotts
Asparagus 
Oregano 
Brussel Sprouts

Luteolin found in broccoli, parsley, celery and avocados has been shown to help as well. "Luteolin's anticancer property is associated with the induction of apoptosis, and inhibition of cell proliferation, metastasis and angiogenesis."

As for protein, limiting your intake can also help. Methionine is an enzyme found in all proteins. Cancer cells need this enzyme to build. Fish and chicken have the highest concentration of this enzyme.   

Over the last several months I've slowly reduced how much and what proteins I eat, sticking to organic / free range / wild caught. Your body needs about 46gram of protein a day. 

3 oz of salmon (which is really small) has approx. 24g.
1 oz of black beans has about 5g
1 oz of pepitas (sunflower seeds) have 10g!
1 oz of nuts (almonds, walnuts, pistachios) has between 5 - 9g 

Happy to share some recipes or more info if you would like. Just let me know. 

xoxo
kati


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2019 at 12:38pm
Hi everyone... I hope youíre all doing well.  I havenít been on the forum in a while as I have just been feeling too sick/weak from the third AC treatment. One more to go and Iíll be done with that part of chemo, thank God! 🙏🏻 My oncologist has decided that I will do the 12 weekly sessions of taxol instead of the 4 dose dense treatments. He said there is absolutely no difference in survival rates between the two, and I wonít need the neulasta with the weekly sessions. 
Kati, thank you for the food recommendations!! I would definitely love it if you could share some recipes. Iím a little confused about the protein intake though  Are you saying itís not good to eat fish or chicken because they have a lot of methionine?? But then you listed salmon as having 24g. Is that 24 grams of protein? And is salmon a fish that is ok to eat as long as it is wild? Any advice is greatly appreciated! 
And if anyone has any suggestions for the terrible taste the AC causes that would be great too. It tastes like I have chopped up aspirin and rotten batteries in my mouth. All the time! 🤮 
Laura 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2019 at 1:21pm
One more thing... I know this may sound crazy, but is there any chance a new tumor could be growing in my boob during the chemo? My right breast, the one that had the tumor, feels like it has a big lump in it. (But not at the lumpectomy site, or even near it... so not scar tissue). I asked my oncologist to feel it on Monday. He said itís definitely ďlumpyĒ and feels different from the left boob, but itís just cuz I have dense breast tissue. He said dense breast tissue feels lumpy  He Offered to order an ultrasound to put my worries aside, but he said it would be for me, not for him. He is not concerned at all. Am I going crazy? I keep telling myself how could cancer grow while you are getting chemotherapy, but what do I know!?! I feel hypersensitive to so many things now. I constantly feel like my heart is racing and my port wire is all messed up. Ugh! I just want to feel ďnormalĒ again. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2019 at 6:49am
You aren't going crazy at all. Its normal for you to be hyper-vigilant. If the oncologist feels its nothing to worry about, but wanted you to get an ultrasound anyway for your own peace of mind, take him up on it! Im sure it will be nothing... but you will sleep easier!

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