Topic: No pCR and still alive and living happy lives

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Sep 1, 2020 07:51AM - edited Sep 1, 2020 07:52AM by Anatje1972

Posted on: Sep 1, 2020 07:51AM - edited Sep 1, 2020 07:52AM by Anatje1972

Anatje1972 wrote:

Dear all,

Today I have started My first session of Palictaxel out of 12.

I have had 4 ACs and the tumor has shrunk from 19 m to 8 mm. I was expecting a full response because nobody felt the tumor anymore, but unfortunately that was not so. Yet I am happy with the 8 m left.

My oncologist does not want to put me on carbo because he thinks is not need for such a small lump and I have no nodes involved (for so far they can see through the MRI and echo).

I am worried I don't achieve a pCR because carbo is not added.

What are your views on this one? And are there ladies who are living long lives even without a pCR.

Thank you all.


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Nov 27, 2022 12:10AM tagety wrote:

Hi Kayrem,

Thanks for the information in your posts.

From what I see, the effect of melatonin on TNBC seems to be studied well.

I can't distinguish between a bad and a good study. There seems to be quite a few studies on this though.

I have a couple of questions.

How did you decide on the right dosage?

When you say to start melatonin after treatment, I am currently done with chemo->surgery->chemo again->radiation and am on the oral medication Lynparza for a year now (2 months in)

Do you recommend to start melatonin after or with it? How did you go about it?

I will be seeking my MO's advice but wanted to know your process too.

Chemotherapy 3/7/2022 AC + T (Taxol) Surgery 5/30/2022 Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left); Mastectomy (Right) Chemotherapy 6/16/2022 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 9/12/2022 Whole breast: Lymph nodes Targeted Therapy Lynparza (olaparib)
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Nov 27, 2022 11:18AM kayrem wrote:

Hi Tagety - I can’t tell between a good study and a bad other, especially when it comes to breast cancer. I noticed over the years even when they start out with good study design it all falls apart if things start going bad for the control or experimental group.

I went on melatonin after my treatment because my doctor suggested it to help me with sleep. She prescribed 3 mg. Over time that stopped working so I upped it to 5 mg on my own. Then up to 7 mg. Then I was on this board and someone mentioned that 10 mg is the sweet spot for TNBC. So as I chronically have sleep issues I went up to 10 mg probably 6 years ago. I have never gone higher though but I usually research everything I am doing every 4 years or so because lots happens in that time (research wise). My daughter who is 16 has POT’s. When she started going to her cardiologist he asked us if she was on Melatonin. She had been on it for years (first 1 mg, 3 mg, 5 mg and now 6mg). I had freaked out when she told me that she had upped it 6 mg on her own and had told her a year ago to try and taper down. But there we were at the Cardiologist and he was asking about melatonin. He said she needed to be on at least 5 mg, so 6 mg is okay for her.

I think it is great that they have something for you to take to prevent recurrence! They never had that when I was diagnosed. You should always look into any supplements before taking them to decide what is best for you and talk to your MO of course. But most importantly do your research. Like I said earlier I had a naturopathic doctor tell me to take something that would have been very bad for me (and charge me a lot for that bad advice…). I am sorry to say but I find most doctors say “sure go for it” or “no way”, but none of them have a clue what I am talking about. In my experience most medical doctors stay out of the realm of supplements and a lot of naturopaths think it’s okay to take everything under the sun…we really have to be our best advisors. But I will be honest, for myself I did nothing while I was “on treatment”. I figured any studies they did on drugs, with any success, they did in a controlled manner. I always wanted to give myself the best chance that I had to get that “good response”. But that was me ….I am sure of other people did things differently.

When you talk to your MO ask them how to proceed.

Honestly, I am coming around full circle to diet at the end of the day. Me and my doctor had these discussions years ago when I asked for Metformin. I told her 8 or 9 years ago that I felt my “cancer” was actually a metabolic disorder. She humoured me and gave me the metformin. I did not feel well on it so I went off of it about a year later. But just yesterday I was reading about the BRca 1 mutation being a metabolic disease. Funny…not funny. I always had stomache issues as a child, I was so different from my sibling’s (2 sisters, 1 brother, all non carriers). I thought maybe this is microbiome related? Why do some people have the gene and get cancer and other people with the gene don’t I don’t want to get into it here but I posted on the genetic thread some interesting stuff that pertains to the whole ovarian cancer risk for Brca 1’s. But now I am coming up with a lots of results on gut dysbiosis and BRCA1 mutations. New stuff only available after my diagnosis, treatment. Fixing my gut (and my daughters) will definitely be my focus going forward and food as medicine will definitely be a big part (and Berberine!!! To control triglycerides and glucose!!).

TNBC is horrible but I don’t feel as helpless as I used to. I try my best and that’s all I can do.

Dx 6/13/2011, IDC, 2cm, Stage IIIA, Grade 3, 4/11 nodes, ER-/PR-, HER2- Surgery 6/29/2011 Lumpectomy; Lumpectomy (Right) Chemotherapy 9/14/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Radiation Therapy 2/20/2012 Breast, Lymph nodes Surgery 3/13/2013 Prophylactic mastectomy; Prophylactic mastectomy (Left); Prophylactic mastectomy (Right) Surgery 5/20/2013
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Nov 27, 2022 02:19PM - edited Nov 27, 2022 02:37PM by dnazyme

thank you for all this, Kayrem! I had never had trouble sleeping until my pathology report, so had begun melatonin for that. I'll look into the other things as well.


nume, I need you to stay alive so we can be TNS without pCR who are alive and give hope to our compatriots! So get well as soon as possible. I did fine on adriamycin (the version of the drug you took that made you so sick). I far preferred AC to taxol. I was simply sleepy. Even the steroids that give others energy were…meh. I slept like a log when I came home from AC. Unfortunately my tumor didn't mind AC either. Shrugged it right off. 😭Hopefully your reaction means you are more sensitive to it. But not THAT sensitive. Not hospitalized sensitive!

Dx 3/2022 Stage 1A EPC, but cells are high grade TNBC 4/2022 dose dense TAC 9/2022 Bilateral NSMx + oophrectomy 10/2022 Lynparza
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Nov 27, 2022 06:50PM tagety wrote:

Thank you kayrem for the detailed response.

I agree with you completely on doing some research before we take anything and to keep the doctor informed.

I am definitely going to talk when i meet him in 10 days.

Just as a background, i am 46, live in india and was diagnosed earlier this year with stage 2b tnbc. I always had my fear of the chemo not doing its job although the MO was confident. Turns out it wasn't and i had my surgery earlier than planned.

I have a 9 year old and am a single mom. Now i swing between "things will be fine" to "what will happen to my son if something happens to me".

I work full time and it isn't good when the panic hits during work hours.

So i keep looking for information that can help me. These forums also pointed me to the breast cancer vaccine for tnbc and i can't wait for it to come out.

I do appreciate your patience with giving this information with appropriate context.


Chemotherapy 3/7/2022 AC + T (Taxol) Surgery 5/30/2022 Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left); Mastectomy (Right) Chemotherapy 6/16/2022 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 9/12/2022 Whole breast: Lymph nodes Targeted Therapy Lynparza (olaparib)
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Nov 27, 2022 11:29PM kayrem wrote:

You are both very welcome Dnazyme and Tagety. Tagety I was diagnosed when I was 46 also, with a 5 year old and a 7 year old. I know your terror. Take a deep breath..

Soon you will be done with your Lynparza and will have choices to make. You will both be fine. Take care of yourselves. Actually all of you take care of yourselves! You are all in my thoughts.

Dx 6/13/2011, IDC, 2cm, Stage IIIA, Grade 3, 4/11 nodes, ER-/PR-, HER2- Surgery 6/29/2011 Lumpectomy; Lumpectomy (Right) Chemotherapy 9/14/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Radiation Therapy 2/20/2012 Breast, Lymph nodes Surgery 3/13/2013 Prophylactic mastectomy; Prophylactic mastectomy (Left); Prophylactic mastectomy (Right) Surgery 5/20/2013
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Nov 29, 2022 04:50PM - edited Nov 29, 2022 05:20PM by nume

Hi all!

Kayrem, thank you very much for all the advices. I will take melatonin for sure once I will be done with treatment. I also need to take something for cholesterol... I am negative for BRCA mutation but PDL-1 positive. After surgery I will have radiation, Keytruda x 9/every 3 weeks and Xeloda. I read on the forum about a test for the AR hormone, a medicine for prostate that would prevent TNBC reccurence. Do you know anything about it?(I also bought a book with very good reviews ``How To Starve Cancer`` that I plan to read)

Tagety, I did Carbo&Paclitaxel and successfully(kind of) had my first Epyrubicin & Cyclofosphamide(3 more to go) As I understood, Dnazyme may correct me, the response should be complete or ``it doesn`t really matter``. I have 50% response, minimum to be considered as such.

Dnazyme, I`m trying to stay alive and give hope to my non pCR compatriots :) but it proved to be a difficult task for the last week. I didn`t get Covid, tested negative. The flu thought dragged along with oxygen levels 93-96. Yesterday(Monday) I went again to the hospital for the infusion and when accessing the port ...sudden fever again. It didn`t take long this time, maybe 10min. So it was not a strong reaction to chemo... My OD is sure the port is infected, called for the surgeon who said it`s enough to inject and ``seal`` the port with a strong antibiotic. Which he did. She didn`t agree so I had the infusion by vein. ``Veins`` I should say because they used 3 of them to complete the chemo. I hope they know what they are doing because I found only one or two studies about this method. Rest of them are in favor of taking off the port, treating with systemic antibiotic and replacing it.

The reaction to chemo was as you said it will be: back home I slept for 10 hours and I felt better today. I am more concerned about a potential port infection than the chemo now.

Today I texted her(OD) to ask if I can drop the Dexametasone. She said it`s ok... I was very eloquent on steroids, borderline manic but very tired.

Anyways, I had chemo together with a 35 years old diagnosed with metastatic ovarian cancer in the summer of 2019. She is BRCA positive and takes Olaparib since then. She has been NED for more than 2 years, with all her CT coming clear.

Yes, do you have any details about the new vaccine? I read the last part of the trial, to establish dosages, ended in September.

...I hope they are coming up with new treatments... Every time I turn on youtube, based on my ``preferences`` a new ``breakthrough research gives hope to TNBC`` pops up...

(I had no reply on my other thread looking for no pCR living happy lives. But I am sure there are many. Otherwise statistics wouldn`t make sense. As Kayrem said, people tend to come to forums and look for answers when they feel fragile)

HugXO

Chemotherapy 9/6/2022 Other Immunotherapy 9/20/2022 Keytruda (pembrolizumab) Dx IDC, Left, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2-
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Nov 29, 2022 06:37PM tagety wrote:

Hey nume, i hope the rest of the chemo sessions are uneventful for u. While i was on AC , I had to get admitted due to nearly zero counts and a raging fever which caused dehydration and low BP. Same thing happened during the taxol sessions too.

I survived though. Like everyone's advice in these forums, take it one day at a time.

My experience with port is a whole another story. I don't like having it but no choice.

My first port, yes first one :), had to be removed because the pipe got cut inside. My MO said he hasn't seen anything like this in all his career .

Then they tried infusion via veins which was not a great experience for me. It used to burn at the infusion site for a week. So i agreed for another port and so far so good.

About the vaccine trial, it being done by Cleveland clinic. Dr. Thomas Budd is leading it. They are i think taking in patients for phase 1b. I am trying to see if i can participate but my hopes are low as i am not in the US.

Chemotherapy 3/7/2022 AC + T (Taxol) Surgery 5/30/2022 Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left); Mastectomy (Right) Chemotherapy 6/16/2022 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 9/12/2022 Whole breast: Lymph nodes Targeted Therapy Lynparza (olaparib)
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Nov 30, 2022 04:13AM - edited Nov 30, 2022 08:35AM by nume

Hi all!

Third day today. Woke up slightly nauseous for the first time. Not too bad though. If it keeps on going at this level I may loose some of the weight I`ve put on during Paclitaxel&Carboplatin, some 12 pounds(5 kg) during 13 weeks. Oxygenation 98-99, temperature 36,5. So far so good.

Kayrem, I should have taken statins for the last 10 years. I had a bad reaction to them so I took Omega3 and lately Red Rice supplements: my cholesterol didn`t decrease by a lot but my triglycerides level was always good thanks to them(so I`ve been told by my GP). After reading your post I have been listening to some lectures of Dr. Thomas Seyfried about cancer being a metabolic disease and I do believe it`s true: Fasting proved to be quite efficient. Did anybody try hyperbaric oxygen?

Looking back I didn`t do things that would have helped on the long run: never drank green tea(as I do now), lots of coffee, was kind of sedentary, ate a ketogenic diet protein based witch kept me fit...but probably not so healthy, I have been smoking for the last 20 years(not in excess but every day), lately(4-5years) slept some 5-6 hours/night.

Tagety, I guess my current problem is I don`t really trust my ``team`` of doctors. Everybody(not this thread, generally speaking) is saying ``trust your team``. It doesn`t come so easy to me. I do not understand how one may have complete trust, doesn`t need to understand. The oncology doctor I saw for the second opinion told me he sees maybe some 10 TNBC/year ...Not a lot. My current Doctor told me I am her first case on this treatment(Keytruda added). 10 days ago told me I will have some injections to increase my white cell count but on Monday I think she forgot about it. Maybe she didn`t. Maybe I don`t need them... I just wish things would be clearer...

If the vaccine trial will be successfully completed in 2023 and FDA approved we(the rest of the world) will have it by 2024, not to far away... India maybe sooner.

Dnazyme, every day comes with a new challenge ...The gift that keeps on giving...

XO


Chemotherapy 9/6/2022 Other Immunotherapy 9/20/2022 Keytruda (pembrolizumab) Dx IDC, Left, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2-
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Nov 30, 2022 11:17PM tagety wrote:

The "trusting doctors" part even I am uncomfortable with. I keep questioning what they do.

Chemotherapy 3/7/2022 AC + T (Taxol) Surgery 5/30/2022 Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left); Mastectomy (Right) Chemotherapy 6/16/2022 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 9/12/2022 Whole breast: Lymph nodes Targeted Therapy Lynparza (olaparib)
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Dec 2, 2022 03:06PM mamacure wrote:

Dear dnazyme,

I feels you. I did not get the golden ticket of pcr. I had neoadjuvant chemo (taxol, Carbo, AC) plus keytruda, radiation and xeloda. I had a very good surgeon and believe she got all of it out. 5/8 nodes still had cancer cells. I was beyond shocked. I believe my wonderful radiology team zapped away any remainder if any. I hated my path report. I even googled who did my pathology, it was someone very experienced & senior. Cancer cells are hiding everywhere. It’s like a constant dark cloud over you. I was depressed. Time is your friend. It has been one year since my surgery. I have therapy via telephone. Any of us can die at any moment of anything. I try to enjoy life, pray & believe that I am well. I wish you peace and healing. Also to prevent reoccurrence, I excercise, drink green tea, veggies, take turkey tail supplement & Prothrivers Wellness flavonoid. As recommended by my integrative oncologist. I’ve been worried about a back pain, it has gotten somewhat better. Hang in there you are not alone!

DX 3/23/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemotherapy April 2021 Taxol, Carbo, Ketruda | Chemo May 2021 Abraxane, Carbo, Keytruda ,AC | Integrative Oncology & Accupuncture

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