Starting Chemo May 2019
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neeli, I have the same ...acid reflux bad for 3 days now (I had AC Monday) ... I did vanilla pudding only last a few minutes..small melas/snacks, crackers, toasted, etc and I have mouth sores....fun times LOL....
I tried baking soda, famotidine, omeprazole, and just tried Zegrede and maalox... somethings gotta work soon ... I haven't had AR for 5 years, since I had my gastric bypass, this sucks
Hope you find relief!
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kimmh012 - hope you feel better from the mouth sores and the AR. Chemo has been hard. Everyday seems to be a new challenge. Wonder how long does it take to feel normal after all the cancer treatment. Miss the normal life so much!
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neelix, from my understanding, we will all learn a new normal ... I have read other posts from ling time survivors, should only be 2-3 weeks after chemo and everyday gets better!!
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I know that when we finish chemo, we all still face different parts of our treatment and recovery. After chemo I have radiation. Some of you need to go through surgery, some have radiation, some have both, some have ongoing tamoxifen or herceptin or other targeted treatment.
I'm just wondering how you feel, most of the time, about your health and cancer prognosis after treatment.
For example, when I think of my last chemo coming up on Friday, my brain always adds "this time." As in, it's my last chemo for this occurrence of cancer. My brain expects that I will have recurrence/relapse. It's hard to find good stats on this, but what I've seen is that 40-50% of triple negative patients will have a recurrence within 5 years. TN is one of the worst, if not worst, for recurrence. I don't feel like somehow I'll be one of the lucky ones. And luck, yeah, LUCK. It feels like a flip of a coin.
This might sound all very depressing, or that I am depressed. Actually, I'm pretty matter-of-fact about it and feel pretty good emotionally. I don't feel doomed. But I know that it could happen and I don't want to be surprised if it does.
How about you?
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I try not to think too far ahead. If I do, I become overwhelmed. I have completed AC. Great. That has been checked off my list. I'm currently on Taxol (with carbo to be added soon). So far, so good. I will complete chemo in September. In October, I'll likely have a BMX. Not loving the idea, but I'm tough and capable and that's what I want. In November or December, rads. From what I understand, I will have to wait 6 months or more before diep reconstruction. Of course, my schedule and/or regime may change.
I'm not afraid to die. I don't want to. I have too much living to do! I want to see my girls grow. I will fight this with everything that I can.
Right now, I'm not worried about recurrence. I have too much to do to let that occupy my energy. I come from a family of worriers. I refuse to live my life that way.
This sucks. I'm not in denial. I am content most of the time. Sometimes I'm frustrated, angry, stressed or sad. I try to acknowledge all of my feelings.
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Happy, that sounds a lot like how I feel. I'm focused on this, on treatment and my every day, right now. I'm not worried about recurrence. I just know it could happen, that there's a pretty high probability of it. I'm not afraid to die, but I'd rather not! And yes, it sucks.
Hugs.
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Much love, MountainMia.
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Mountainmia - I certainly understand your feelings and can identify with what you're feeling. It is good to let it out, and glad that you did. I struggled with the feelings of recurrence after treatment as well. I went from a "one and done" lumpectomy with IORT radiation only needing to be done once at time of surgery to a second surgery to clear idc/dcis margins, to needing a third surgery to clear DCIS when told my onco score was high and needed chemo. I still face surgery after chemo then at least 3 weeks of radiation. Anyway, I went through weeks of depression thinking I was doomed as well due to all of the unexpected twists and turns of my situation. I have gotten over it. I put it out of my mind. Going through chemo greatly reduces my chance of recurrence according to the stats. I am fortunate to have been given that choice. I know that I cannot change what may happen in the future, but feel confident and hopeful about the fine treatments available to us in this day and age. Also, there are new treatments that will certainly be available in the future. Recurrence is not necessarily a death sentence either. I have a friend who was TN 6 years ago and is doing great today. So try to keep a positive attitude. I know it is easier said, but you will beat this.
Blessings and warm hugs--:)
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Hello May chemo ladies. I am new to this site. I started my first treatment of Taxol & Herceptin on May 28. I have been reading the post by so many brave ladies. I am about to do my 6th treatment of 12. This week has been the hardest by far. Very tired. I have just started with the severe acid reflux. Take Zantac 150mg daily but that seems to be no longer working. I have also had major vision changes. Oh and I have to take 2 days of oral steroids because of red rash on arms, chest, and face I get the day following infusion. Need my cheaters to see most thing near and far. I am trying to stay positive but really hard especially with the fact my varicose veins that were pretty unpleasant have become down right huge and angry. I chose to do a lumpectomy on May 2 so I could make it to see my baby girl graduate high school. I am pretty set on double MX after treatments. Also I was not able to do a breast MRI since I have BB in my face from childhood. Will definitely look into getting it removed. Cut my hair to a pixie, but it is really falling now. I do icing on my feet and hands during taxol and eat ice. My anxiety levels are so high. Feel like I was sucked out of my life and put into a nightmare. Just hoping and praying I can get through the next 7 treatments and beyond.
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Hi all. Nat is hanging in there after AC#3. #4 is a week from tomorrow. She has more nausea, reflux and bone pain this time. Even with the 20% drop!! Nat has TN and BRCA2. Our geneticist said that her chances of originally getting BC was approximately 80%!! And recurrence chance of like Around 50%. BUT with the DMX the chance of recurrence drops to around 7% and some say less than 5%!!! So our MO said the DMX and eventual ovary and Fallopian tube removal is a must!! I think those are pretty good odds. I have spoken with a 31, 7, 3,9 and 5 year TNBC survivors. I think there are just so many long term BC survivors out there!!! We just have to get the treatments and surgeries over and then get back to our new normal lives. God’s blessings on everyone.
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I had TNBC also, and the stats are very different depending on chemo responsiveness. If you get a pCR your stats are very good (90% of pCR people have no recurrence in 5 years, and the recurrences basically drop to zero at about year 5). I believe the 45% stat is for those who do not get a pCR. And of course, some of those people will defeat it in round 2. These numbers are improving with Xeloda and other newer therapies for people with a residual tumor at the end of neoadjuvant chemo.
The rotten recurrence stats for TNBC are the reason I did so many complimentary things. I did ANYTHING validated, to up my odds a point or two. Such as taking metformin and melatonin, eating a largely vegan/pescatarian diet, High dose C IVs, hyperbaric oxygen, interval training, supplements, intermittent fasting, fasting mimicking, hyperthermia, & rigorous exercise.
The silver lining of TNBC is that if you get through that first 3-5 years cancer free, you are more and more likely NOT to recur, ever, so you can gradually relax and know you dodged the bullet, whereas other cancers do not have this steep drop-away in recurrence. And also, we TNBCs do not have to take hormonal or Her2 meds for years and years which can effect quality of life.
I feel attentive and concerned, but not worried. I know I got the best response possible to chemo and I am thrilled about it, and feel lucky and well. I am pushing myself to continue my regime through the window of recurrence. 1 year down, 2 to go.
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ByUmom2, hello. My eyes are bothering me, too. They are runny. Sticky runny, not like tears. It's nasty. My vision is blurry sometimes. The BB reminds me of my husband. He's eight years older than his brother. He used to chase him with his BB gun. Wth. You should check out the weekly Taxol thread, too. I've only had two of twelve.
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Happyanyway sorry about your eyes. Said a prayer for you and umom2. Unfortunately Nat is having harder SE from the antibiotics than the AC! She is on them for 7 days to hopefully prevent her from having any diverticulitis. She takes one a day and soon after she gets nauseous and feels bloated. She can’t really take any nausea meds while on this antibiotic 😩. 3 more days of antibiotics then hopefully better until Monday when we do our last AC!!! Happyanyway you do #3 T on Friday or skip a week
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Hi jrominger. Thank you for your prayers. I will continue to pray for Nat, too. AC number three was the most difficult for me. I hope number four is better for Nat. This Friday is my third Taxol. I'm ready for it. I have the 12th off. I may see if my husband can take a day off that week so we can take a trip to the mountains. I need to get my kids out of the house and do something fun with them.
Sorry, jrominger. I read your post again. I hate that Nat is having a difficult time with the antibiotic.
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Thanks HappyAnyway! I have checked out the weekly Taxol group. I go in tomorrow for Taxol #6 and Herceptin. This past week has been hard...lots of fatigue and aches.
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ByUmom2, good luck with treatment tomorrow. I'll be thinking of you.
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I can so understand the fear of recurrence, which is absolutely normal and humane!
I am dealing with recurrence. The first time I was diagnosed in 2011, with stage 2, grade 2 lobular cancer, highly ER / PR positive, HER negative.
Lymph nodes appeared to be unaffected (MRI, ultrasound), sentinel node was negative on biopsy and Oncotype DX score was low. I decided to have a mastectomy; because of tumor size compared to my humble B cup, there would not be much left anyway.
Tumor board reco was: no chemo, no radiation (but I did get IORT to the skin and behind the nipple area). I was on tamoxifen for four years and then changed to letrozole.
Approximately a year after initial diagnosis I found an increased lymph node in my armpit, which was checked and monitored all the time and was pronounced benign over and over again... until this February, when, during my regular follow up visit, it was not benign any more and the recurrence was discovered.
Life can turn on a dime. Just day before I and my hubby were actively planning our multiday hike in April; and here we were talking about surgery end of March / early April, followed by chemo and radiation... I am a scientist by background, in fact my PhD subject was researching Platinum-based anti-cancer agents (LoL). So yeah, I was painfully aware of the fact that my cancer recurred on AIs which are considered the silver bullet for lobular. But... I was also quite well aware of advancements in the research. New therapies do become available every year.
After taking my time to fall apart:), I assembled the pieces together and my resolution was: hang tough, hope for the best and do what you can to stay as healthy as you can.
Exercise, prolonged over night fasting, eating well, reducing stress... etc
In addition... I stopped playing the numbers game. Instead, I do my utmost best to stay in the present and prevent my imagination from running wild into dark places.
I mean...the odds used to be strongly in my favor and I drew a short straw not once but twice. Perhaps now it cold be just the opposite
. I do have difficult moments, of course I do.But ... nobody knows what tomorrow brings, while today - today is good.We ARE strong. All of us. We will get through this, and we and our medical teams will do whatever we can to never see the beast again.
And if this happens - if the beast rears it's ugly head - there will be even more ammunition to beat it into a pulp.
I am rooting for all of us. We will make it, ladies!
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Hi everyone. Spa day #4 of 6 for me today. I’ve been taking a little break from the group just for the purpose of rejuvenating as much as possible. Thanks for thinking of me HappyAnyway. I’m doing ok. I’m a little weepy today I think likely heightened due to very little sleep last night. Ah steroids! Doc gave me a Rx for sleeping - didn’t work just made my legs jittery! Bit this too shall pass.
I’m planning a getaway to Cuyahoga National Park with husband and son for the weekend before next Tx. A good distraction and something to look forward to.
I had BMX before chemo back in March. For those who are doing BMX down the line I encourage you to study up for questions to ask surgeon before doing so - especially if you are going flat (like me). I wish had a better list of questions before surgery. If you want some direction let me know - happy to help. There is also a good Facebook private page that has good info for flatties - It’s called. Flat and Fabulous
Good yo catch up and read everyone’s status. With regards to ‘after treatment’ I think it may be some of the hardest work we do - figuring out the ‘new norm’ and moving forward without fear.
I signed up for the Casting for Recovery retreat in September in Ohio. It sounds like it may help with moving forward.
Cheers to all! Stay focused on beating this junk!
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LaCombattante, you have been through so much. You are an inspiration to me.
Alicesneed, I hope today goes well for you. I'm going to take you up on your offer to field questions regarding BMX. It may be a while.
Chemo brain is a challenge for me these days. If we were all talking in person, I believe that I would be able to communicate better. Trying to communicate through my keyboard is not so easy sometimes.
So, today it's ByUmom2 and Alicesneed in the chair. Anyone else?
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HappyAnyway, you're doing better here than I can. Honestly I am not tracking well with all of us. No offense intended to anyone that I don't often respond directly.
LaCombattante, thanks so much for your thoughtful answer. Your story is such an example of doing all the right things and still drawing the unlucky card. While we might lack in "luck," what we DO have are choices in how we respond to it. I'm doing what I can to show my children and others around me how to deal with bad things with some amount of grace or strength, and with a sense of humor. As you say, we have today, and today is GOOD.
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Just came from my final regular MO appt, prior to my final AC on Friday. Good to mark one more thing off the list.
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Awesome MtnMia!!!! Get those nasty AC ones done!!! We do our # 4 this coming Monday. God Bless and best wishes!!!
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ByUmom2 and Alicesneed. Praying for you. One more down. Keep up the good work.
Happyanyway, how are your eyes doing? Seems like they might be able to do something about that...dang it!?
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Whew, again I haven't done anything but lurk for over a week...... Every time I read these posts, I am so uplifted by all the strength and courage in this group. You all make my day. Even when you have a bad day, you acknowledge it for what it is and move on to more positive thoughts. I had my last TC last Wednesday and spent 48 hours in the hospital this weekend- running fever of 102.4 Saturday. No cause identified yet. Massive IV antibiotics.
My best friend just got bad news at her doc; both her bone and liver metastatic disease are worse not better. She will be switching chemo regimes - back to bad IV stuff. My situation is completely different, but it's really hard not to put myself in her shoes. Sometimes the only question in my mind is 'when' not 'if' I'll be walking her road. That's bad, bad, bad. And wrong, wrong, wrong. I know that intellectually but am struggling with it emotionally. Plus the pain of watching my best friend go through this. So through it all, I am really working on coming to terms with my future. Short term - radiation. Then Arimidex. Onco assures me I have a very low risk of recurrence. I think I gotta have La Combattante's attitude about it and keep living life fully, taking it one day at a time.
Even though I don't participate regularly and mention each of you by name, know that I am reading your posts and sending my prayers and good vibes to all of you. And I appreciate all of you. You are all strong and amazing women!
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Alright MountainMia!
Hey jrominger! My eyes are still weeping. I feel like a mutant. Remember the movie "The Fly"? All kidding aside, my MO says to keep doing what I'm doing, which is using Artificial Tears. Hopefully my eyes will get better as time passes. My nurse navigator said Cytoxan is likely the cause. Thank you for asking. I bet Nat is ready to get her fourth AC over with.
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SJWhitten, I'm sorry that you ended up in the hospital. Of course you're putting yourself in your friends shoes. That's what good friends do. I will keep you both in my prayers. I'm going to end on a positive note, good for you for completing TC!
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Yesterday I met with my MO for my final regular appt. We had a good talk about risk reduction for prevention of recurrence. I asked him about using metformin. He told me that while research shows it seems to have preventive effect before a cancer diagnosis is made, there isn't sufficient evidence that it can prevent a recurrence. Since my blood glucose is not too high, his concern would be that using it as a preventive medication would drop my blood sugar and cause problems in that direction.
I asked him about other ways to reduce risk and he shrugged and didn't have much to offer. He said if I were overweight he would recommend I lose weight. But my BMI is normal and my weight is very stable for years at a time. So weight loss isn't in my cards and likely wouldn't help me. I don't drink much alcohol, but he said that again evidence isn't convincing that drinking even less would be helpful. My diet is on average pretty healthy, so there isn't a lot to change on that and research has not pinned this down at all, anyway.
In a way it is frustrating, because of course I want to feel some level of control, some rules to live by that will keep this from happening again. BUT in a way it is very freeing!! I did all the right things and was on the right side of all the risk indicators BEFORE being diagnosed. The only thing I did wrong, relative to breast cancer and risk, was to be female. And still I got cancer. Shit happens.
So I plan to live my life in my moderate way, as I always have. I don't need to worry about following rigid rules or feeling guilty if I eat something off plan or have a beer or … or what? Have party mix and chocolate milk?I will not feel guilty for having too much fun.
Obviously your personal health circumstances might be quite different from mine, and your doc might have specific recommendations for you to reduce risk. As they always say, your mileage may vary.
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You're the best, MountainMia. 💕
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Mountian Mia,
There is so much you can do. Talk to an integrative MO or a naturopathic physician! Our MOs are great at oncology. That is not nutrition nor integrative medicine. Those are their own disciplines. My MO, super by the book, IMMEDIATELY prescribed metformin to me and my glucose was high-normal (90's). He considered the evidence on Metformin excellent re that it has anti-metastatic benefits.
He questioned and researched everything my integrative MO consult advised me and after researching the supplements he concluded that they were all fine to take even if not double-blind studied. He rolled his eyes at the beginning but my results were VERY good and he became more comfortable with what I was doing outside of oncology.
These are all practices that have validated positive effect - lowering recurrences. Some may be specific to TNBC, so check....but here are the things I did/do:
1. Supplements & other common meds: I am doing 15-20 daily supplements (EGCG from green tea, indol 3 carbinol from cruciferous veggies, curcumin, reishi mushrooms, quercetin, ubiquinol, selenium, and a bunch of others). I take metformin (500mg x 2) and melatonin (20 mg /night - work up to this amount). I am looking into mebendazole and doxycycline, two repurposed common meds with significant anti-cancer activity that I may do a 30-60 day course of just as an insurance policy against stray stem cells. There is positive data coming from certain statins too. And baby aspirin. And flax seeds. And, and, and. Too much for one post. See "How to Starve Cancer" and The Moss Reports for all the backup studies.
2. Nutrition: My rule is only nutrient-dense foods. No empty calories. Mostly I eat a rainbow of vegetables and berries (low glycemic), plenty of nuts, small amounts fish, and scant amounts of other animal products. Vegan/ pescatarian, whole foods diet.
3. Fasting or fasting-mimicking on a regular basis... like a 3 day water fast, about every 90 days. Great for immune system. Intermittent fasting (eating in a <11 hour window out of 24 hours) is also good for you, especially immunologically (read up on it - Dr Valter Longo/USC).
4. Intense exercise using large muscles... literally squeezing the cancer cells (as they circulate through working muscles) can kill them. Sweet spot for lower recurrences is 3.5-6 hours per week of getting your heart rate up with real exercise but can be a brisk walk. Interval training is particularly beneficial and efficient. I hike up and down a steep mountain behind my house 3 x week and do pilates (resistance and weights) 2x week.
5. low (under 20%) fat in the diet, favoring vegetable sources of fat and avoiding animal fats.
6. Hyperbaric Oxygen: an oxygenated system is the enemy of cancer
7. High dose Vitamin C IVs: super high C (impossible to get to this level orally) has a toxic effect on cancer cells due to becoming a pro-oxidant at high levels; cancer hates oxygen.
8. Infrared sauna or hyperthermia - heating the tissues of the body will kill cancer cells at 109-11 degrees which is not lethal to healthy cells.
I am a data point of one but I did all of the above through chemo and had NO neuropathy, no skin issues, no nail issues. Yes, my hair fellout and had gnarly anemia/exhaustion by the end, but no serious or lasting adverse issues. Got a pCR from chemo. I feel VERY good and am not 6 mos post chemo and surgery, and 3 months post rads feeling very good. My only residual thing is I need more sleep than I used to need (maybe its all the hiking!).
I encourage everyone to explore these things with people whose field is to know about them!!
PS I have the odd alcoholic drink, the odd burger. I do not want to be draconian on myself. But I do not do these things very often. At my own home, I stay healthy and loosen up if I go out to a friend's as I do not want the reputation of someone who cant attend a normal dinner party!
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I agree mtnmia. You are the best. Your information and attitude are very helpful and align with ours! Santabarbsrian your info is very helpful and I am taking notes!! Praying for everyone.
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