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 09:51AM - edited Sep 1, 2020 09:52AM by Anatje1972

Posted on: Sep 1, 2020 09:51AM - edited Sep 1, 2020 09:52AM 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 20, 2022 12:31PM - edited Nov 20, 2022 01:23PM by nume

I like your sense of humor, Dnazyme! Yep Can`t find many. My post had some 50 views since this morning(10 hours ago) but not one reply. It`s kind of scary to think 50 people were interested to find out but none with a positive story to share. I wonder how come I didn`t pay more attention to this detail while reading all those thousands of posts most of them success stories. There must have been at least a a few!

Something else on this forum I mentioned above: people do not post after an important events like a scan they were so stressed about at the beginning of the thread. I`m left wandering for weeks and looking for newer posts on other threads just to find out what happened ...Because I`m happy to find out somebody received good news... I even asked twice how did it go but I didn`t receive any answer. It`s strange how we become involved in other peoples lives... It would be funny if the subject wasn`t so sensitive.

If nobody minds I will write tomorrow if I am accepted to chemo or not with a cold.

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 20, 2022 12:40PM nume wrote:

Thank you for the link KayremHeart!

Please share if anything else that helped comes to mind! Any information gives me a sense of control and creates a perspective.

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 20, 2022 01:58PM - edited Nov 20, 2022 02:37PM by exbrnxgrl

nume,

Looking at views and then comparing that to replies results in no correlation whatsoever. The vast majority of us who post tend to post when things are not going well. Those who are doing well do not always come back to the forum to report that. No one can be compelled to respond and when folks stop posting/responding, there is simply no way to know why. Please don't interpret that as anything more. Take care.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2- Dx DCIS/IDC, Left, 4cm, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Nov 20, 2022 03:15PM - edited Nov 20, 2022 03:58PM by nume

It is so true xbrnxgrl! I was thinking what an emotionally consuming altruistic effort it is to reply to people in such a big need of answers, to follow their stories and try to help. I am sure most of the people go on with their lives as soon as they can or simply get on with their lives mid story. It makes perfect sense. I know I shouldn`t ask... My asking is egoistical. Just makes me feel happy to know they received good news, they are ok. There is such a bond this trauma creates...

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 20, 2022 03:52PM - edited Nov 20, 2022 04:29PM by kayrem

Yep…so true. I am all over the boards when I think things are not going so well, or I have concerns. When things are going good I am out living my life and I have to “remind" myself how important the posts from other Triple Negatives that reassured me were in my scary times. Then I come back to visit…

I was 46 years old when I was diagnosed. I had a 5 year old daughter and a 7 year old son. I had just finished doing at home palliative care on my 77 year old dad who passed 10 months prior due to lung cancer (with an unknown primary - is what the pathology report said. I am thinking he'd probably had breast cancer but they never found it??). Ladies…I seriously thought it was game over for me. But it was not.

Nume - where to start. After you are all done your treatment, I do have some suggestions, that may or may not have helped me.

1) I was not big into supplements but I had my Vitamin D tested. It was low. I did 2000 IU, then 3000, finally settled on 4000IU before my levels went up significantly. I always got them tested through a naturapath to keep track of them. But I will be honest I struggle to remember to take Vitamin D every day now (sometimes only take it 2 times a week ☹️)

2) Green tea - drank TONS of it. Basically only drank green tea and water. I still do but I am finding I am a bit dehydrated of late so i am drinking one electrolyte drink (Hydrant) a day as required.

3) I got the Anti Cancer book by David Servin-Schreiber and he recommended eating every day on your salad; 1/4 tsp tumeric, pinch of freshly ground pepper, dissolved in 1/2 TBSP of olive oil, then add 1 tbsp of salad dressing. Then put it on your salad or in a smoothie, I always did salad.

So what happened… for 1 year I had neutrophil and WBC counts just like I was on Chemo. My doctor was not concerned but then I had all these prophy surgeries that I had to do so then I had to com off everything. I still remember my breast surgeon coming into my room on the day of my procedure saying" Guess who's neutrophils and WBC's are normal". Okay then! So for the last 8 years I kept my neutrophils and WBC low on purpose. I told my doctor years ago that I thought I was giving myself a “natural type of chemo" by keeping my neutrophils and WBC down. She said “Why would you do this to yourself?" I had no answer at the time. But now I do! I found information on NET (Neutrophilic Extracellular Net's) which have been implicated in metastasis development. I found out about N/L or neutrophil to Lymphocyte ratio's and how lower the better. All of these things my doctor had no clue about.

3) I always took melatonin after my treatment was completed, but only 5 mg. After a few years I read that one of the ladies on this site was taking 10, so I upped it. Not quite like me to do that without researching the heck out of it but “Why not??" Now there is information about reduced rates of recurrence in TNBC with the use of Melatonin and I believe I did find one study that used 10 mg, so I guess I am good.

4) Seabuckthorn juice/ berries - probably since 2 or three months after treatment I started drinking seabuckthorn juice (Himalayan -different brands). I only did it because a friend suggested it. She said it was anti inflammatory. But now I look up and it there does seem to be some evidence in Petrie dishes😄. Not quite the best evidence ….but hard to get people to study this stuff as it is a natural product not a drug they are going to make a lot of cash on. Sooo….seabuckthorn has a lot of quercetin in it apparently (also good for TNBC).

5) I exercised a lot. I did 3 -5 hours full out on an elliptical machine every week. I literally was running from my cancer. In retrospect I probably did not have to go at it that hard.

6) But first if you have not yet, definitely get tested for a gene mutation. You all sound young …that is a red flag,


Unfortunately the kicker for you Dnazyme is the anemia. I have to think on that one. Because just about everything listed above chelates metals (iron/copper). Have you always been anemic or is it new? Pm me if you want to talk. I am glad to read that you are trying to up it with food and not supplements (Really bad idea!! - unless you are all done your treatment, then I am not sure if it is okay? But during treatment definitely no)

I just found out that quercetin chelates iron because I was giving it to my daughter for her allergies and her ferritin is at 19 (from 59 four years ago). She has Dysautonomia or POTs and I believe Mast Cell Activation Syndrome (MCAS). I believe I had Pots when I was young, from 14 years till 20's (dizzy when standing, racing heart rate - Tachycardia,headaches, vomiting - good time, good times…). I bring this up because many people with POts have anemia. It is a chicken and egg situation…they don't know if the anemia causes the POTs or the POTs causes the anemia because symptoms overlap. Anyways I have been thinking about this since I learned about your troubles with anemia Dnazyme.

Take Care

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 22, 2022 10:00AM nume wrote:

New problem... Yesterday was to be the first Epirubicine infusion. But 40 min after Keytruda, after the first drops of Epirubicine I had an allergic reaction. A bad one: blood pressure 21, chills like epilepsy fit(not small tremors). I remained conscious. with fever 42 Celsius(max for the human brain) so I could have had a stroke... It went on for 30min...which is very long... Their main concern was to decrease my blood pressure with hot electrical blanket, which went on for 41-42Celsius for some 6-7 min ...Of course all the medication too...

So no infusion... Which was good because the friend who took me from the clinic and stayed awake until 4 in the morning(steroids) today tested positive for CovidSadIf I test popsitive for Covid in 5 days time(this weekend) no more chemo for 2 weeks I guess.

I am panicked of course. Messaged my OD she told me to take some vitamins and monitor my oxigenation... I had Covid in late July 4 months ago, 3 bweeks before all this nightmare started, I hope I have a thread of immunity left...

Any advice? Anybody had Covid during chemo?


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 22, 2022 10:27AM nume wrote:

What were the chances?! Across my country yesterday there were 250 Covid cases and officialities announced the Covid numbers will be published once a week from now on... Pffff

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 22, 2022 02:37PM kayrem wrote:

I am so sorry to hear that your day did not go as planned!! Please know that I am thinking of you and sending you positive thoughts! My friend who was diagnosed two months after me, with same stage as you had to have one of her chemo’s delayed for 2 weeks because she got sick. We were all terrified at the time but it worked out fine. My friend is still around today. We both are coming up to 12 years post triple negative diagnosis. Take a deep breath Nume and know that people are thinking of you.

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 22, 2022 03:15PM nume wrote:

Kayrem,

I soooo needed thisHeart

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 25, 2022 12:01PM - edited Nov 25, 2022 12:10PM by kayrem

Hi Dnazyme. I have found a couple of things that may be helpful to you once you have finished your treatment and are able to do supplements. These are things I actually have bought already just haven't gotten around to trying yet. One is ashwagandha and the other is Chlorella.

I bought the Ashwagandha from Costco about 1 year ago because my friend (a botanist) was going on about trying it to help with sleep. I always buy stuff but then I forget about it and move onto something else, then find it a year later just in front of its expiration date😂. But I don't care I take it anyways (unless it has oil in it). So look up Ashwagandha and anemia, and triple negative breast cancer. It apparently does “Epigenetic silencing of triple negative breast cancer". It does lots of interesting stuff, look it up. I have to have surgery in 2 weeks to remove a plate and screws from a broken/healed Olecranon fracture, so no supplements for me but as soon as my procedure is over I will probably start taking it just to see how it works.

The next thing is Chlorella. This is kind of interesting because it can be very high in iron ( my bag has 12 mg per serving), or not. It depends on the type/variety. So you definitely want to read the label. I bought a bag of Organic Traditions from a local health food store but I noticed a bag of the same brand on Amazon that had more iron and B12 in it then the brand I bought, so I guess it varies based on the batch that Organic Traditions harvests?? But I don't know much about it's impact on triple negative breast cancer. You would definitely have to look into it. I bought this powder to put into a smoothie for my iron deficient teen daughter. It apparently chelates heavy metals(???) but is good for people with iron deficiency (???). This is a bit confusing to me.

I will be honest I do not take many supplements at the same time. The only things that I do consistently everyday is

1) 10 mg Melatonin at bedtime (apparently there is some evidence to suggest that “Melatonin alleviates iron stress by improving iron homeostasis")

2) 5 mg desloratidine tablet. I have done this for years (probably 8 or so) because I have allergies and I found some crappy study ( not designed well at all!) saying that it may help prevent recurrence of triple negative breast cancer. That was 8 years ago. I do a google search today and quite a few articles have been written about it now.

The rest of the stuff I take on and off. I take Simvastatin maybe 2/3 days per week, 4000 mg Vit D maybe 2 or 3 times a week (with a salad, using the tumeric salad dressing mix I mentioned above). I am taking Berberine (500 mg) every second or third day because although my cholesterol has come down my triglycerides are a bit high. But really all of it is optional.

After I was just completed treatment I went to a Naturopathic Doctor who “Specialized" in Cancer. My GP was on mat leave and I was scared to go a whole year without someone I could consult with. I was taking 5 different supplements at the time (Vit D, Seabuckthorn, and 3 others I forgot). I was worried I was taking too many, maybe some were working against each other??? Anyways after I showed him my “extensive" collection of supplements he said “Is that all you are taking?? I left that office with almost $200.00 worth of supplements based on his “recommendations". Two of them I never cracked open the bottle because I got home and researched them and they were REALLY bad for triple negative breast cancer. One was Vitamin E and another was resveratrol (resveratrol is good in food for TNBC but not so safe in a supplement). Vitamin E is just bad for cancer PERIOD. When I told my GP (when she got back from mat leave) that he told me to take this that first thing out of her mouth was “You can't take that!!" I said “I know!!!" So just be careful what people tell you to do. I research the heck out of everything (to the best of my ability) before it makes it into my mouth.

You can’t do anything about the past (no PCR), that is what I had to deal with too because I would come to these boards and a lot of the ladies in the US were getting neoadjuvant therapy and getting pCR’s or significant shrinkage. I went into chemo with faith and hope that it would do something, but i never reallyknew if it would/did. One thing I did know was that as soon as they told me they were done with me “Good bye and Good Luck” that I was going to do everything in my power to not give the cancer a hospitable place to grow in.

Anyways, I hope I have given you some stuff to look up over the winter. Just get through the treatment any way you can. Do everything they tell you to do and when you are done what they offer you (the chemo) then you will have an opportunity to figure out how to go forward. You will have more control over your choices and you will slowly start to feel like your old/new normal self again. You all can do this. Happy Thanksgiving to all of you in the US from Canada.

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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