Triple negative breast cancer
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Your MO may increase the fluids given with your infusions, too. Once you have the proper meds to combat side effects, you will feel much better.
The side effects, for me, tend to be cumulative. Still manageable and not debilitating, but the fatigue has knocked me down a bit.
You may want to look into fasting. That's why I recommended you to look up santabarbarian. I have fasted before, but not during chemo. It may be worth a try.
The steroids that I take the evening before and day of chemo cause problems with my sleep. I take melatonin, which seems to help. Your MO may be fine with you taking it.
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For me the chemos were about the same until the end when I did not "bounce back" after chemo #5, but stayed very tired.
The fasting really helped me. I figure if someone is nauseated they will not be eating on days 3,4,5.... well, a fast is simply moving that no-eat zone to days -1, 1, & 2. It is important to "re-feed" on nutrient-dense foods.
Between the things you can do for yourself and the arsenal of options your MO has you will find an easier way to manage for the next chemos. Do not worry about them being much worse every time. That is not likely other than the build up of fatigue.
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Sgg0340 - so sorry you feel so bad. I was also very sick from AC and it got worse with each treatment. For the last treatment I was given a Sancuso nausea patch and it worked wonderful for me. Ask about this - it was fairly new when I was going through chemo 2 years ago.
You’re in my thoughts
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Sgg0340- I'm so happy to find this thread! We are on very similar paths. I am also triple negative, and had my first chemo on 8/23, going in on 9/5 for round two. I am also on AC now, then will move on to Paclitaxel, then mastectomy, then radiation. Sounds like exactly the same path. I have one small tumor, and one malignant axillary lymph node.
That much nausea sounds miserable, and not normal. You should be able to call and get additional or alternate anti-nausea meds. I have several different meds on hand, with instructions on when to use them and which ones can be used together. Nausea is manageable and you should not need to suffer through such misery.
I strongly identify with your freaked out fear at the beginning. This is just an overwhelming thing to be hit with. Being new here, like you, I am just learning the lingo. Reading the words and advice of everyone here has been reassuring and helpful. Finding someone here (YOU!) with a similar diagnosis and treatment plan feels like finding family. We can do this.
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I’m so happy you found this too since we have very similar situation. I go back on 9/10 for second round. I hope yours goes as well as can be and I’ll be thinking of you. We can do this!
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Yes we can! Met with my MO and had round 2 of AC yesterday. All went well, chemo was uneventful, and we can feel huge shrinkage in my malignant axillary lymph node already. Won’t be doing measurements to have objective numbers until my next appointment with my surgeon on October 3, but that left me feeling very optimistic!
My hair started coming out by handfuls last night, chemo day 14, so getting this mess buzzed completely off today.
Side effects not bad. Nausea well managed, tired but getting lots of rest, food tastes weird. I can stand to lose a lot of weight, so I’ll try to just focus on getting plenty of fluids and proteins and fiber and not worry about caloric intake for now
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I’m happy to hear you did good. I got 2nd round on the 10th and was sick and nauseated for several days. I go back on the 24th for round 3. They said they cleared the parameters in my breast but the lymph nodes still had cancer in there so we are doing the chemo and then gonna strip the lymph nodes out and then radiation. I found out that my HER2 is positive so I will be getting herceptin added to my therapy after the red devil episodes. I have been trying to research to see if a mastectomy is something I need. I wouldn’t mind and if I knew it would help I’m all in! I know what u mean about the food. Everything taste weird and I feel like there’s always something in ,y throat like I’ve been stuffed lol. This is like a lethal injection gone wrong. I hope you have a good week and try to get some rest my f
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"like a lethal injection gone wrong" - perfect!!!
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it’s been a while since I’ve post anything and I hope everyone is doing as well as can be. I’ve finally finished the red devil and started taxol and I forgot the other one and they have their own set of wonderful side effects. I guess they are the lesser of the two evils. I’ve been extremely tired and have nosebleeds and emotional isn’t the word. Anyone else feels these? I’m rambling I know but curious about how others are getting by.
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Thank you Sgg0340 for reviving this topic! We hope that others chime in. It's not easy.... we understand.
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Sgg, - try Ayr nasal spray to help prevent nosebleeds. Rest when you need to, - but also get out and enjoy when you can, - a walk on a nice day, a good movie, or any interesting distraction helps!! All those meds get to us, - hang in there!! Sending hugs!
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I just read an interesting article called “Breast cancer cells starve for cystine.”
https://today.duke.edu/2016/11/breast-cancer-cells-starve-cystine
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very interesting, AnnC! Thanks for posting!
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Checking in and wondering how Sgg0340 is doing now- we were on very similar treatment schedules. I had my final chemo treatment on November 27, and I am SOOOOOO glad that is over! Chemo every two weeks was rough, the effects got harder to bounce back from as I got weaker. I have a bit of neuropathy in my fingers from the Taxol (even though I iced them), but I think I feel that beginning to get better. Lost my hair very early on, but did not lose my brows and lashes until October/November... you truly look naked with no eyebrows.
I had surgery a week ago. I was originally slated for a double mastectomy, but my surgeon felt good about my response to chemo and went with just a lumpectomy (I was very relieved about that!), and axillary lymph node dissection. I just got word that pathology results are back, and they look PERFECT. Complete response, clean margins, evidence of previous disease in the removed lymph nodes but all clear now. I feel a little numb and cautious and afraid to really celebrate the good news yet. I'll meet with the oncologist for a "survivorship" appointment next week to talk through everything and discuss future checkups and outlook... maybe it will sink in then and I'll be able to take that deep breath of relief. I know that triple negative is aggressive and recurrence is a fear, so I'm anxious to talk about how we keep an eye on that.
For now, I'm a bit sore from the incisions and ready for this yucky surgical drain to be removed. I want a real shower. I want my hair to start growing back. I'm feeling so much better now that my blood counts are returning to normal and those daily nosebleeds are gone. I want the flu outbreak in my town to pass so I feel comfortable being around groups of people again. I am ready for a new year and to get back to NORMAL.
Sgg0340- I pray for good news to come your way, too!
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TexKat YAYYYY! That's fabulous news!!!
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I have two more chemo treatments and then will have to continue once a month for a year. I go back Tuesday so hopefully I’ll find out about my surgeries I’m supposed to be doing next. This is horrible and the heartburn is awful lately. I’m glad your doing good and I will be praying for you my frien
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I’m so sorry you’re still fighting side effects. I start 6 weeks of radiation mid-January, not sure what else I may need to do yet.
I’ll be hoping you get some good information at your Tuesday appointment.
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I will keep u posted for sure
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how is Texkat doing? I have finished my week to week chemo and now I will go every month for a year just once and take a chemo drug but I'm scheduled for a double mastectomy and lymph node stripping next Tuesday the 21st. I'm scared and I guess that's normal but has anyone have any tips on it? Anything that will make it easier or any input. ALSO i hope I get good news on my pathology report like TexKat did. I’m so happy for her and I know that’s gotta be the best feeling
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This is not medical advice but just reporting my experience with PcR--
I was worried about lymphedema (due to a friend of mine who has it horribly) and so I asked my BS if she could take fewer nodes-- and then if she found any live cancer, then she could go back and take more of them. She agreed. Based on Lx and 4 nodes, here was only dead cancer so I kept all but 4 nodes. I mention this because had I not asked, I would have had all level one and two nodes taken. So glad I did not do that.
My BS told me that the trending was toward fewer nodes being taken. (I found one article suggesting women w PCR who receive a set of biopsies to check whether or not there was residual cancer after chemo, could skip the surgery altogether, and outcome was just as good.)
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thanks for the info santanarbarian but they are having to take all my lymph nodes due to there being tumors in the lymph nodes. I’m afraid of the lymphedema also but I’m gonna try my very best not to come out with that hopefully. I pray i have a good outcome but only God knows.
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Just to clarify mine: I had chemo first. Cancer was also in my nodes at diagnosis, but when imaging seemed to indicate a pCR after chemo, I wanted not to "overdo" the surgery if I indeed WAS cancer free. They never know *for sure* till actually doing the surgery, and looking at pathology, but it looked very good on MRI. That's when I asked her to do a less radical surgery and I agreed to go back in for more radical surgery if any cancer was still in there.
Everyone's case is different but I assumed that you were getting chemo first if you had TNBC in your nodes.
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yes I’ve had chemo first and now surgery
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Ok, so my situation is similar, unless you have residual cancer per your MRI/ Mammo/etc after chemo.
My MRI and other imaging indicated a pCR and I did not want a bunch of healthy lymph nodes to be taken if they WERE actually healthy. So my BS took 4 nodes and found only scar tissue - no live cancer... In order to negotiate this I had to agree to a 2nd surgery if cancer was found. Luckily it was clear,
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I will have to ask my surgeon and oncologist about that. I know my oncologist was the one wanting all them out so I will ask him for sure.
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It can't hurt to ask if that is important to you.
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hey, gang! Just now getting back online after going on a cruise last week! It was incredible to get away and spend a week in the Caribbean sunshine with lots of happy people. I worked hard to coordinate schedules with my doctors to be able to take that trip and am so grateful that everything fell into place. I was careful with hygiene, did not leave the boat at ports, skipped the pools/saunas/anything involving being in water. Drank a bit less (a LOT less) than i usually do on cruises... i was worried about my stamina but found that I could do everything I wanted, just a bit slower than usual. It was a FABULOUS week of “fun therapy" after being essentially housebound for months, and a great confidence booster. Now I'm back home and started radiation yesterday. Two sessions in, it's pretty uneventful so far.
since I had 25 lymph nodes removed on Dec 18, I was a bit apprehensive about the flight and lymphedema. I got fitted with an off-the-shelf compression sleeve and wore it for the flights, no issues at all with that. My upper arm is still numb but I have good strength and range of motion. Since I wound up with a lumpectomy rather than mastectomy I didn't have much healing to deal with.
And the fuzz started coming in on my head last week! (And on my chin, the joys of being old...)
Sgg0340 had surgery scheduled for today- I'm anxious to hear how that goes for her
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HEY TEXKAT I’m so happy to hear from you! I’m glad your cruise was awesome and I’m so happy for you! I had my double mastectomy and lymph node stripping this past Tuesday and it all went well. I have looked at myself now and it is different but I’m ok with it. I go back for follow up Monday and hopefully will have pathology report by then. Dr said I didn’t have a lot of lymph nodes to take but I did have scar tissue there she took to send to check for regression so I’m not sure what that is yet. I will keep u posted on mondays dr visit also! I’m so happy for you Texkat
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My daughter-in-law (40) has just received a grade 3 triple negative breast cancer diagnosis after a biopsy. She had a ct, MRI and bone scan to follow up. today they got the news that there is cancer in her lymph nodes and probably cancer in her breastbone. The bone scan and ct scan showed nothing in her bones, but the MRI did. Now they are scheduling a PET scan. I am so fearful for her and her family. She and our son have 4 children, oldest just turned 13. Is there a silver lining here? We are all devastated. Many prayers going out to all on this site.
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The main silver lining is that TNBC is one cancer that can really be killed and not come back. And you don't stay in treatment for years and years. It has a good response to chemo and, if it is throroughly defeated in round one, it has a very good chance of not returning ever. Very important to get good treatment and be aggressive from the beginning. I wish your daughter in law all the best.
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