No pCR and still alive and living happy lives
Comments
-
While I will second the advice for seeking therapy over this, and antidepressants, the median lifespan for metastatic TNBC is 13 months. It isn't like other subtypes. Supposedly there is one woman who has lived with NED after being stage 4 TN for 15 some years--possibly an internet legend--but these are rare beyond belief. I do not see many long term-ers on the stage IV forum with TN. I'd love to hear from anyone with metastatic TN who has lived over a decade. Heck, I'd love hearing from a stage 4 TN that has lived at that stage over 5 years. Possibly moth, but she is gone.
The fear of those with TNBC without pCR is based in reality. The only good thing about it is this fear (which other subtypes share) doesn't last for decades. There is no other subtype where response to chemo is so indicative of overall chance of future survival. I'm not even going to cite my sources because I don't want nume googling them. There is hope that adjuvant xeloda will help all of us.
0 -
This ``ride`` begun for me in panic. For many reasons but mainly because I knew absolutely nothing about cancer. Wish I could say I blindly trust my oncologist but I actually started reading everything, making notes, trying to systematize when I have no base for the information. I have an artistic-technical background, I am a product designer. I live in Eastern Europe and when my doctor shown me 2 treatment options for my type of cancer: the one used in Europe and the US one I said I wanted the one used in US.
2 weeks into my treatment(having had twice Pax & Carbo), after not being able to eat more than 600kcal/day for weeks, I found myself at 3AM(it should have been Tuesday night, after Monday steroids) in front of the desk full of notes, with 20 opened windows on my laptop, in full blown panic mode. I stood up to open the terrace door, fainted on my way there and broke 2 ribs. The good thing was from that point on I didn`t feel a big deal of side effects from chemo; I could hardly breath and move for the next 6 weeks. As the pain cleared up I felt tired and anemic but not before.
The information I gathered, based on studies, graphics and statistics is not that bleak but the terms are quite depressing. Basically what I found out is for TNBC NOW they are trying to identify the ``targets``, to personalize treatment according to gene mutations. TNBC WILL become curable in few years time. They made progress with BRCA, PALB and AR positive(AR+ for metastasis) so far.
Since I couldn`t drive 2 hours daily to work and back and couldn`t pay attention to things I enjoied before: books and movies I spent days reading hundreds if not thousands of posts threads that slowly made me feel not so lonely anymore. Thank you for being here SpecialK, Norcals, Wrenn, Dnazyme, reading your replies already made me feel better. Dnazyme, I so understand you: I couldn`t tell my father or better said I didn`t want to explain to him. Two people he knew who dealt with cancer have been healthy for the last decades so he thinks cancer has a tough treatment but it`s always curable.
I don`t know what`s the best way....As your colleagues, my oncologist strongly suggested few times I will have pCR so the last week result came as a huge disappointment but hope was great on the short run. ...We also have a good friend, a surgeon who told me when I got the diagnosis most of the times after neoadjuvant the lump can`t be found anymore...
Will begin to exercise as soon as I can. During the last 2 months the only exercise I had was walking the dog some 30min everyday. Thank you so much for the advice
What vegetables do you use? I`m making fruit juices everyday but the one veggie juice I made was horrible... I also avoid meat lately... I was on a protein meat based diet just before I found the lump...
Thank you all for being here
XO
0 -
Dnazyme, I had tears in my eyes reading your last post. I am so sorry we share this fear but I am grateful you understand me
0 -
Dnazyme. I believe I know the about the woman you are talking about. Her name was Dionne Warner and she lived in Saskatchewan (I live in Manitoba). When I was first diagnosed in 2011 a friend gave me the book “Never Leave Your Wingman"and then every year I would look up her name on the internet to give me hope. She survived 25 years after her first diagnosis with TNBC and had nine battles with cancer, many at stage 4. She passed last Feb (2021), using the MAYD program in Canada. She was incredible….
Anatje, I never knew if I had a PCR with my chemo (FEC and Pacilitaxol) because I had surgery before chemo. Back then in Manitoba that was how they rolled…Did it work? I guess so. Still here at an initial diagnosis of Stage 3A. I had ALOT of therapy and ALOT of fear. I fought hard to be tested for the Brca gene and found out I was positive for BRCA1. I had the prophylactic surgeries almost 2 years after my diagnosis and I am still here.
The fear does abate a lot as you get out from your diagnosis. I guess my fear abated enough that I gained 30 lbs and my cholesterol is on the higher side😊😬. Not good. But I am taking Simvastatin and not going off it ever. I had been on it before (4 years ago), but because I was doing it prophylacticly I just stopped. My Doctor is okay with me being on it for ever. Low dose (10 mg) and I take it when I feel like it…not because I need it. Look it up for later…to decide if it is for you.
Get through the treatment. Do your research and decide what approach you will take going forward later (I.e. exercise, Green Tea, etc.), but for now just focus on being kind to yourself and getting through treatment. You all have a lot of wonderful memories left to make for you and your families 🤗.
P.s. when I went for a scan almost 4 years ago (because I had a bad rale in my chest) my Radiation Oncologist told me “Wow almost there?" I said “What??". He said after 10 years they are using the word “cured" for TNBC patients. A catch though…only the original cancer. You can still get a new one he said (talk about giving a compliment/high five and then taking it back.). He said with Er/Pr positives they are moving to a more “Chronic Disease"model like type 1 Diabetes. Basically you need to stay on the meds for the rest of your life. I have read a lot of your posts over the years exbrngrl but I don't come here much anymore.You are awesome.
P.p.s. I did not answer your question Anatje! I have no clue wether I had a PCR or not but I am totally living a happy life! You are more grateful for the time you have been given. I have travelled all over the US, Europe and Canada. I have better quality friendships and a better marriage as I set boundaries after cancer that were not there before cancer. I was given another chance to do things. You will be given another chance too!
0 -
Kayrem, I am so glad she was real. And for the time she got. And it helps to remember in the past people had surgery first, or had to stop chemo, so pCR isn't part of those stats.
Nume, do not try to eat like me! I am what happens when someone who does not get hypoglycemic + works(worked) long hours in an environment where you can't have food + doesn't have children she needs to feed grows to adulthood and gets cancer and must learn to eat in a healthy manner. I used mostly broccoli and apples at first. My nurse practitioner recommended a greens powder if I did not want to buy vegetables. There are lots of those, but surprisingly expensive.
I wanted fiber and things high in iron in my shakes. Calcium can interfere with the uptake of iron, is why I started switching my diet. Frozen blueberries are easy to get. I freeze bananas. It helps to add water to the blender, which I had not considered...I thought I should just use fruit juice. Carrots keep well and are easy to add. Kale freezes nicely. Things like that. I do half veggies and half fruit. Or slightly more veggies than fruit
I don't mind meat, but have a pre war apartment in nyc and there is no fan over the stove. Someone on Reddit mentioned dark chocolate is high in iron. I don't love chocolate, so I can have half a bar for breakfast and not eat the rest. I go through one bar every two days.
Remember this, because from my reading of the xeloda threads, supposedly people on xeloda do better when they do not eat a lot of folate. Dark green vegetables have a lot of folate. I don't think dark chocolate has folate. I'm sorry, nume, but probably you will have to eat dark chocolate while on xeloda. For your health. Maybe even afterwards. Probably you should have some now.
I wasn't trying to prevent recurrence with my shakes, I wanted to recover from being anemic so I would not have my lynparza dosage lowered. I was too depressed to make salads or put together a hot vegetable dish. I think only exercise has shown a benefit per recurrence, not diet. That said, the placebo effect works, even if we don't know why. If eating a certain way makes you feel better or more hopeful, and does not interfere with your medication, I'm a big fan of eating that way.
I'm also going to ask my PCP for generic Lipitor, which has shown some help with TNBC. I have normal cholesterol levels, but it can't hurt and might help!
0 -
Hi. Just wanted to post one more thing. When I went through treatment I ate whatever I could, when I could (which really was over the last 2 weeks of the chemo cycle). I did no supplements, no alcohol and no drugs, and while I did try to eat healthy, I really just ate what I could stomach. I also mindfulness meditated because cancer care was offering a course for free and my therapist thought it might be helpful. It really paid dividends for me through radiation. Going through the mantra in my mind kept me still in the chamber. But it was a lot of work (1 hour a day) and I truly felt that there was not a huge tangible benefit to it.
Fast forward to this article I found a couple of weeks ago..
https://www.nature.com/articles/s41598-020-71670-y
Sooooo…tumors are innervated (breast cancer mentioned specifically in this particular paper) but through the sympathetic nervous system but suppressed by the autonomic nervous system (vagus nerve specifically). There is a correlation between a higher Heart Rate Variability (HRV) and reduction in reoccurrence (I believe I read that somewhere). When I was doing meditation back then I thought it was hard but useful enough. Fast forward to today.I do deep breathing to try and increase my vagal tone and HRV. When I meditate I can bring my HRV from a 15 (one foot in the grave) to a 60 ( that of a 30 year old -I am 58). I do transcutaneous vagal stimulation on my ear with an adapted TENS machine and I have never got it close (HRV on Apple Watch tops out at 46) to my mindfulness meditation number. So I guess what I am saying ladies is if you can get a fitness tracker, definitely do, and start to work on your HRV through meditation because I sincerely believe it can’t hurt and it may help according to science based evidence (sparse as it is).
0 -
Kayrem, thank you so much for sharing! I read there is a link between cholesterol and cancer. Will be asking for a statin. I always was on the upper numbers and took Omega3 or Red rice supplements for many years. Last week I was slightly above max value and thought it was because I stopped taking them. But didn`t give it a second thought. The increase of vagal tone and HRV sounds extremely interesting too. I actually tried 2 methods today: took my dog for a walk into a small forest near my house and tried long exhales for some 10 min. I`ll keep on exercising it.
Exbrnxgrl, I can feel you care. Thank you for being here! If until now I had Adrenalin spikes each time when something unexpected came along for the first time since my diagnosis I felt somehow defeated during the last few days. I will go to therapy once the chemo is over.
Dnazyme, I am trying to keep my iron intake high too and will decrease the folate intake after the surgery. Thank you for the information! ( I took your advice and had some dark chocolate right away)
Tomorrow I am going for the first AC infusion. I don`t know if I will receive it because it seems I cought cold. I don`t have a fever but I do have a sore throat, a stuffy nose and feel myself warm. Did it happen to any of you? Were you accepted for chemo? I sent a message to my OD. She said I should take paracetamol. I did. Didn`t tell me anything about not coming in tomorrow. ...Such a little thing that normally would pass in a day or two becoming such a big concern...
Also called a friend - Oncology Surgeon. He retired last year but still performs surgeries from time to time. I made up my mind today to have surgery to him. He is so optimistic. Said he did thousands of surgeries before they could tell it was one subtype or another, women were treated with few general citostatic drugs and the vast majority of the patients are ok years later. Gave me some examples of advanced TNBC cases that he knows are doing ok.
On another note, this morning I posted the question of this topic on another(UK) forum. I had no reply yet but it`s a slow forum so I`m still waiting for replies.
How was your weekend?
XO
0 -
I have heard great things about using breathing to adjust HR via the vagal nerve…to improve depression. I had not pondered it might also be helpful for the immune system, and thus cancer. Thank you for alerting me, kayrem.
Do you have a specific app you use, or just use a heart rate monitor? I used coherent breathing as a guide for depression, although it looks like the person who trademarked that name has become militant and strange. I bought a book and CD, but never did any courses. Here is an overview. There were excellent studies for it. https://www.verywellmind.com/an-overview-of-coherent-breathing-4178943
Like many things it helped a bit, and I was glad for the tool. Then I let it fall by the wayside. It will be another good tool to use now: something positive to focus on that might help and certainly won’t hurt.
exbrnx girl, I apologize if I was impolite. Especially since I am not stage 4, I ought not to be lecturing someone who is, and made the effort to give helpful advice and perspective. Greetings from the increasingly Disney-fied and not-cool Manhattan.
Instagram is not good with details like pCR status, and Twitter, even before Elon Musk (😱), was not helpful for making TNBC connections. I am still not sure where to find all theTNBC people who did not have pCR, but are also alive and healthy. They can even be alive and healthy but grumpy! This thread will have to do for now.
0 -
Oh one more thing before I go (it never rains it pours!! Not active for almost a year but have a lot to say today!). This was a pretty good website that I used often when first diagnosed and still come back to occasionally. It is applicable to all types of breast cancers (you may have already heard of it exbrngrl).
https://foodforbreastcancer.com/I definitely used it to guide my actions (diet, supplements, exercise) going forward after my treatment. Take care and good luck. 🤗🤗 I will be thinking of you all
0 -
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
0 -
Thank you for the link Kayrem
!Please share if anything else that helped comes to mind! Any information gives me a sense of control and creates a perspective.
XO
0 -
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.
0 -
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
0 -
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
0 -
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 Covid
If 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?
0 -
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
0 -
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.
0 -
Kayrem,
I soooo needed this
0 -
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.
0 -
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.
0 -
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.
0 -
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!0 -
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.
0 -
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.
0 -
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)
XO0 -
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.
0 -
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
0 -
The "trusting doctors" part even I am uncomfortable with. I keep questioning what they do.
0 -
The "trusting doctors" part even I am uncomfortable with. I keep questioning what they do.
0 -
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!
0
