Chemo Starting August 2018
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Hughope1 i had lumpectomy in 2014 for stage 1 cancer <2cm no node involvement..,,and in 2018 i had reccurance in same breast .., despite of chemotherapy and radiations .,, so now part of me regret anout my decision of lumpectomy 4 years ago..,All the bes
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@bostonangle25, how are you now ? please get rid of these hives before your chemo date .., wish you best of luck fir your last infusion.
Nisha, i am really glad you are feeling fine.
I had my third AC infusion on Friday ... now i am feeling pretty much normal. i am just concerned about my pale look.. my HB is 11.3 which is kind of little low may be :
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officially HALFWAY through chemo! Woohoo! it's now Day 2; I'm feeling better than I did for #3... I just figured out the SE's and now I'm switching to Paclitaxel; wish me luck. The tumour is down to about 4cm from 8cm; this is also excellent news.
Kelly-Anne; I have a 12yr old daughter who just started a new school. She's seeing a psychologist to help her through the bc and all the changes that come with becoming a teenager; poor kiddos, it really must be so overwhelming. Good for you for recognizing the need.
Hughope: I would love to hear the answers to your questions as well; the lumpectomy vs mastectomy - I have TNBC which is agressive with a high chance of recurrence within the 1st 3 years. If I go with lumpectomy and they don't get clean margins; is the expectation that this chemo business starts up again? Would anyone have an opinion as to one vs the other?
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Bostongal—I managed to talk the NP into letting skip my first Taxol dose to go on vaycay as I had never had Taxol before and was so afraid I would be away from home and be sick. I’m so glad I did as my daughter broke her finger and I ended up in the ER with her. I stood for hours as I refused to sit anywhere in that ER. Too many viruses. Too many people with face masks on coughing. Although I look awful, I was floored when my almost 12 year old daughter stepped on the scale and she weighs more than I do now and I’m 4 inches taller than she is.
My night sweats are awful and I wake up stinking something fierce. It’s revolting. It’s not a normal stink.
My hair is growing like mad. Leg hair, head hair, etc. it actually started growing back maybe my third but definitely my fourth AC. I can’t figure that out. Now I’m afraid Taxol might do it in again.
Liv—did you start Taxol yet? I start Monday. I had not seen you post and was hoping you were ok.
Anybody on weekly Taxol?
Jess
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Hello Sunshine, Thank you for the info. So many decisions when you get close to surgery hard to know what is the best choice. I will continue to read and take in as much info from my forum here.
You did lumpectomy and now you are back in treatment, what are they going to do? It looks like you are set for #6 chemo treatments and are halfway, same as me? If they do the mastectomy surgeon wants to do the Mastectomy with the Tissue expander placement rather than using one of my muscles to reconstruct which was more the way I was leaning. I'm sure when I see the plastic surgeon next week he will give me a whole different set of choices.
It looks like you are scheduled for lumpectomy, is this correct?
Looks like you have done the surgery that my surgeon is talking about, any input from you would be appreciated. I have not done surgery yet, looking at trying to get this done about a week before Christmas.
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hugehope1 I'm in the same position. My surgeon won't do a lumpectomy due to having 2 tumors and also DCIS. I was leaning toward DEIP flap but would have to travel 4.5 hrs to get it done. If done here they would have to put in tissue expander but I'm really fearful of the pain and time required. I have an appointment with the PS but can't get in until end of October so of course all this continues to keep me going crazy with questions. My surgery is scheduled for mid-January.
Wanderweg and anyone else with info on tissue expander would be appreciated. I am currently DD and will only have mastectomy of right breast, just so many questions.
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I had a little speed bump-- my port had to come out. The wound reopened. I was so elated to get rid of it! It was NEVER comfortable and I always hated having it. My veins are doing well and I will just have the nurses do an IV for the next three chemos. GREAT to be truly half way including recovery days.
Yes, day 7-8 is when I start feeling like myself again. I agree-- getting ahead of the constipation is helpful to get the taxotere out.
Getting my wind back takes a bit longer.. maybe day 10 or 11. The chemos have all felt about the same to me...#1 was worst, and #2/3 have been better but pretty similar. A predictable rhythm.
I plan to do a lumpectomy. My tumor has responded very well to chemo (Taxotere/Carboplatin) and I think I will opt for the least invasive surgery my medical team supports. I think they expect me to do radiation regardless.
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Lumpectomy may be back on the table for me, at first they said tumor was to big, but has gone from about 3.5 cm to 2.0 cm and still have 3 chemo treatments left. Doing another 3d imagining on the 19th, and hopefully that will give me a better picture of what it is doing.
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Hughope1, i had lumpectomy in 2014 with chemo and radiations. In 2018 i had reccurance in same breast and i had mastectomy with diep flap reconstruction (immediate) nowi am doing chemo have done 3 cycles 5 more to go.
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Sunshine89,
Surgeon keeps telling me that one procedure vs the other, has changed so much over the years that one is as good as the other. Just seems like I am getting mixed emotions here. All my girl friends that I know that had mastectomy believe that is the best way to go, they both had reconstruction using their own lower ab muscle. My surgeon does not like this procedure. Diep flap procedure, what is your feelings on this?
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I am so encouraged by reports of successful shrinking during chemo first
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I felt/feel the chemo working intermittently. it feels fizzy with mild pain. .............the first time was a day or two after chemo 1. It made me think to feel for my tumor which I then noticed was significantly smaller.
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hi ladies..checking in on everyone. I am day 7 after my 3rd infusion and seem to be feeling a little better sooner this round.
Hoping all of ou are hanging in too...💕
I am halfway finished with chemo now. I think there are a few of us that are. Wish we could all celebrate together when this part is over!
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Hughope - I did have a bilateral mastectomy with tissue expanders placed. I didn't have enough spare muscle/tissue to do anything else. I won't lie, the TEs aren't fun. They're uncomfortable and everyone I know who had them were glad to get them replaced with implants. But I guess it depends on your previous size and how much expanding they have to do. I was able to have mine done in two fills and so the whole process, from mastectomy to exchange, was just two months. The fills didn't hurt at all during, but were sore after. The worst of it really is the drains, but I think you get those regardless of which reconstruction you do. The first few weeks are tough, but it does get better. Of course, at the time I had all of that, I though the mastectomy was the worst thing ahead of me. Didn't know I was in for chemo.
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Wabderweg- why do they put expanders - for big breadts or for small to expand? I just had single mastectomy and immediate recon with Mentor Memory gel implants !!!
Hughope- I would do mastectomy vs lumpectomy,
I heard Sunshine’s 89 story !!!
So if you have grade3 tumor and higher onco score consider mastectomy with reduction if you need it! Immediate recon !!! Do you want radiation ? It’s no good for heart and for anything else!
Smansmom and Sundhine89🤗I m back and forth with hives , I have to take Allegra which I didn t do , I think maybe it is salmon I ate or maybe my liver acting up - I don’t know . I never had hives in my life!!
Sunshine89- I hope ypu white cells counts go up!!! And you won’t be pale anymore!
Smansmom- ypu might feel metallic taste in your mouth because of your chemo I heard Metaqil from Amazon May help. I didn’t hVe food aversions with TC .
Girls who eill go for chemo tomorrow- good luck !!! Be strong!!
Nisha- you had SE I hope you will stay strong and conquer em!!
Hughope- hope you will find solution and decide what is better for you!!! And be happy with the results!!!
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wanderweg thank you for the info, up early heading to chemo #4 this morning. Nothing like having to drive an hour and a half into Atlanta and fight traffic to go get treatment. That is always great for a morning attitude. LOL
Sarahnola, Glad to see you are back up so quick, you must be getting this figured out.
thank you for all the support and info. I love that you always step up on this site and encourage us, wish some of us could be more support for you. xoxox Hughope
Okay everyone, stay strong, we are all in this together. Got to go get shower and get on the road. Chemo #4 today and appointment w/MO. So it will be a long day, I will write more later. Hydration is the key, so drink, drink, drink, got to flush your kidneys back out after chemo.
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Hi ladies! I have been lurking around and decided I needed to hop in on the conversation finally. I am 8 days post #3 of 4 TC treatments. I am using the Dignicap with much success (I have a lot of thinning and some slight balding on top which can be slightly covered). I also ice my fingers and toes. The first four to five days post treatment have been worst with fatigue, nausea, and severe constipation. Once I get those under control It’s not too bad. I have horrible cravings thank you steroids for all things carb and have gained about ten pounds. I have a fun eye twitch - either eye as it wants to appear along with a rash on the nape of my neck and stomach which I have a topical cream for. Sleeping comes and goes, but I have lorazepam to help. I also walk or elliptical four/five times a week and hot yoga three - I credit sweating and intense hydration for any normalcy.
I wanted to respond about the mastectomy question as I had mine done in July with nipple sparing, sub pectoral, direct to silicone implant reconstruction. I opted for this to avoid rads and chemo as initial thought was nodes were clear. That, unfortunately, was not the case and I am looking forward to rads in November. However, I would still do the mastectomy over lumpectomy. I am not quite used to my foobs yet, but I can sleep on my stomach, get a massage, and skip wearing a bra so there’s that.
Thanks for all the positivity you all spread. I hope everyone has the best Friday and an amazing weekend.
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so I have an appointment with an integrative MO next Thursday. I want to see what he’s all about. He still has conventional methods including chemo but they’re given in a different way with fewer, harmless SE’s. I think someone has mentioned him, dr. Block of the block method in Chicago. I just feel like at my current cancer center, we’re all just patients in an assembly line. I hate that so much. We are all human beings fighting the fight of our life. Plus, I want answers to questions like “what is the difference between 4 chemos vs. 6?” And I don’t want the doctor to just say “that’s what’s been studied.” I want concrete evidence that I need to put this poison in my body 6 times versus 4 times. And I want doctors who believe in dieting and lifestyle effectinhealth. All the conventional doctors believe that health and lifestyle have absolutely nothing to do with cancer. And that we can continue to eat whatever. Maybe that’s true, maybe not, but they should provide concrete evidence. Anyways I’ll see what dr. Block says next week. Thank you for letting me rant!
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I'm the one who had a consult with him-- and if I were in the Chicago area I would have picked him. Just could not face getting on a plane to Chicago every 21 days on top of treatment, or I would've.
Luckily I have been able to get some of the things he advocates here in my hometown, through a naturopathic MD: tons of supplements, very careful diet, High dose C, nutritional IVs, Glutathione. Was also able to split my doses and get taxotere am, carbo pm but Dr Block does an even more sophisticated "chronomodulated" pulsed dosing with a much slower drip. Luckily I live very close to the hospital so they let me leave and come back, with the needle taped off between doses.
I think my oncologist here is learning a lot from me, re this approach... nobody does a double blind study, which costs $50M!, to prove efficacy of a vitamin as there is no money to be made from it. But Dr Block's results are excellent and he sees a lot of people in stage 4. So far I am handling chemo very well, blood work bouncing back rapidly, moderate SEs. Maybe that's just luck, but maybe it has something to do with the ~20 pills and three powders I take every day, or the fasting, or the keto diet, or the interval training, the other stuff I have been doing that I had to find out about on my own.
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On the surgery selection conversation... I chose lumpectomy. Amputation of any kind is a big decision. My surgeon and oncologist said same statistical outcome for both. I was told mastectomy with recon would make the breasts match sizes better. I wasn’t mentally prepared for the mastectomy and did the lumpectomy. We took out a 5.6 cm mass. (Yup big sucker!) The surgeon was very good. With a good bra on you can’t tell there is any difference.
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Thank you Kelly-Anne. That’s what my MO said yesterday; there’s no difference medically in the statistical outcome of lumpectomy vs mastectomy. I’m waiting to hear the outcome of genetic testing. If I have the BRCA1/2; they’re both coming off. If not; lumpectomy. I meet with my BS on the 18th to discuss further.
I’m a pretty busty gal; so there’s lots to work with. I’m hopeful there’s no node involvement
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RATS. IT GOT ME!! The secret box of Halloween candy wouldn’t stop calling my name.
Ate the Wunderbar. Think the M&M’s might have to be next.
Yummy!
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bahaha! That’s awesome Kelly-Anne! Eat the candy!
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Kelky-Anne eat all the candy you want!!
Hughope- hope everything was ok today!
Wishing you all a peaceful evening...
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oh I forgot! I am also getting high dose vitamin c intravenously with another doctor. I cleared my MO first.
This treatment was the first time I “straddled” chemo and I have definitely bounced back faster this time. Not sure if that is why or not but wanted to let you all know.
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Hello All, I haven’t checked in in a while. Day 10 and felt good enough to go out for our wedding anniversary. Very touching moment when at the end of the meal, and gave our card for the $100+ meal, our waitress gave our card back and told us that our meal was being paid for by a couple that at first we didn’t even recognize. Ended up being the cousin of our neighbor who had heard of my journey. Wow. There are such goodpeople out there. We were floored.
Changing subjects, same thing with me .. Surgeon convinced me that there was no statistical difference between lumpectomy and mastectomy for cancer return. KWilli, your story was the same for me. I waited after the genetics test came back negative, and had the lumpectomy. There didn’t seem to be cancer in my sentinal or auxiliary nodes per the cat scan prior to surgery which helped with that decision too. Of course post surgery, the pathologist confirmed the nodes were clear. I’ve been happy with the lumpectomy results aesthetically. My surgeon was awesome.
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I also have a bad eye twitch that I have never had before, sometime both eyes. I told my MO yesterday that I went from wearing 175's to read at work and now had to buy some 250's. He told me not to refill my script until after chemo that some of the eye issues should clear up then.
I would like more info from you on the 20 pills and three powders you take every day and the keto diet please.
Hello everyone, No difference medically in the statistical outcome of lumpectomy vs mastectomy, is what my MO said, yesterday also. Well I am done with round #4 of chemo yesterday. Up this morning doing pretty well, at least i'm still wanting fluids. "knock on wood" Maybe I will go try and eat some while I don't have the metal taste yet. Hope everyone has a good weekend. Talk to you soon. Hughope1
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Hughope - My oncologist told me there is no difference in long-term outcome/life expectancy between mastectomy and lumpectomy WITH radiation. There is a slightly better chance of not having a local recurrence with mastectomy, mostly because there is very little tissue there to have a recurrence. I think it boils down to emotional reasons. Some people prefer breast-conservation and, particularly if you have large breasts, you can avoid reconstruction and the problems that go with that. For me, I wanted out of the cycle of mammograms and biopsies. I also didn't want to do radiation. My mother had DCIS back when a lumpectomy/rads/chemo was the standard. Five years later she had a local recurrence, and had a mastectomy with DIEP flap. That was twenty years ago, no problems since. Since my cancer was IDC and much more aggressive than my mom's, I wanted a mastectomy out of the gate. But there isn't a right or wrong answer, it's just whichever option brings YOU peace of mind.
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Hughope1, hope there no chemo SE for you!
My right eye was twitching after surgery as well! Now it’s gone .
Wanderweg, did you perform double mastectomy or single? Did you have brca1 gene since your mom had dcis? Thanks
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Hughope--
My supplements have been guided by my consult w Dr Block and with an Naturopathic MD in my town. Some are specific to my cancer and my blood tests but a lot of it is generally recommended for all BC... Dr Block has a book "Life Over Cancer" which goes over the recommendations he makes from the horse's mouth... As I have TNBC which can be it's own animal. Basically it's a lot of nutritional support for the immune system, and things that protect certain parts of the body from the damaging effects of chemo. He also prescribes exercise. Pilates/Yoga and something to peg your heart rate like interval training.
Me: Metformin, Melatonin, D, selenium, fish oil, alpha lipoic acid, curcumin, hawthorne, B6, Quercetin, Coenzynme Q, L- Glutamate.
Natruropath added Salvestrol, Oxaloacetate, Genistein to the above and increased a few doses.
The Naturopath tested my blood and found some quirks and deficiencies that are specific to me. She had them remove shedded cancer cells from my blood, culture them, and test various nutritional compounds known to be toxic to cancer against them, and she has me on 4 of the ones that came back as effective. She does my IVs with these supplements, plus overall nutritional support like more D.
The three powders are OM Reishi mushroom, SuperGreens, and Tera's Whey (a form of dairy that does not increase inflammation, to make sure I have enough protein). All organic. These I put in a smoothie w/ unsweetened Califia kefir (nut based) and Cocoyo yogurt (coconut based) for probiotics & fat. And a handfull of low carb fruit, like blueberries. Tasty!
Diet: A ketogenic diet is very low carb. Without sugars, alcohol, flour, rice, potato or other high-carb foods, your body will burn fat for fuel. Fat is broken down and results in ketones, which healthy cells can readily use for fuel but cancer cells cannot use. Hence you are starving/stressing cancer cells. You can get "keto sticks" at the drug store which measure ketones in urine, to see whether or not you are in ketosis. BUT -- I am also instructed to keep dairy and animal fat low (inflammation), and limit myself to one egg yolk per week (you can have whites). So the "Atkins" method of eating a ton of meat, cheese and butter, while ketogenic, is not the right kind of keto diet for cancer.
You want to eat mostly vegetables, w/ small servings of deep sea wild caught fish (salmon, tuna) and occasional organic grass fed meat/chicken, plenty of healthy fats like olive oil, avocado, & nuts, and a small serving of berries (a low carb fruit) each day as well. I flavor my water with a glug of ginger kombucha. I relax during 'rebuild,' when my appetite returns after chemo, and allow myself toast, chips, or fried rice, when that's all that seems appetizing, to get my digestive tract going, but I would say I have obly had 5 or 6 servings of 'forbidden' food since July. Relax means lentils, buckwheat, sweet potato or quinoa, in small servings.
**Fasting mimicking: I do this for 5 days prior to chemo. You eat very low cal version of above (first day 1100, thereafter 800 cals). OR you can do an actual fast for 72 hours (water only). There is a special composition of about 15% of you calories from protein, and the rest split between fats and carbs. You can look this up online (Valter Longo USC). This diet also stresses cancer cells AND protects healthy cells AND boosts immune system. All synergistic w chemo.
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