Triple negative from Brazil (T3 Nx M0)
Hello girls, my name is Bruno, I'm here to share with you the experiences we're having (me and my mom) in this struggle. She's called Nair, but everyone calls her 'Nana'.
Since she can't properly write in english, I'll translate everything for you. In first place, I wanna thank you all. I need to say that I've been reading this forum for a while, and I think you all are wonderful human beings. You've been helping a lot!
Well... let me tell you a little bit about us and our history...
My mom always had lumps in the breasts, more than 50... Always benign. She had 2 previous breast reductions, in which the plastic surgeon removed all of those lil' balls and sent to biopsy. She always had dense breasts... So Mammograms didn't work too well for her.
Ultrasound became routine.
She's 51 now, she's been doing mammograms + ultrasound of the breast since she was 40, every year.
This year, in february, the ultrasound found a dense fibroglandular tissue aglomeration of 4 cm. We FREAKED OUT.
Doctors said it was nothing... 'She had plastic surgery, that's normal... Go home'. But the lump was still growing, so we went to a new doctor. We did more mammograms, more ultrasounds, they came with an aglomeration of 7 cm this time. So she did a core biopsy. 15 days waiting for the pathological result: Invasive Lobular carcinoma, Nuclear 2, histologic 2... Intense desmoplasia... Perineural infiltration...
She cried so much, she was devastated... So did I... I was terrified. I just finished college, in one of the best universities in Brazil, and I was about to travel for of a job. I thought I would achieve great things, and than give her all that she deserves. She raised me and my brother on her own, my dad left us when I was 7, so It's been pretty much me and her since always. But then, this thing appeared, and I left everything waiting to take care of the further diagnosis and treatment decisions, since it's everything so complicated for her - and my brother is a good for nothing bastard that don't give a damm... Even he's being 27 (I'm 21).
Well, I've hurried with the staging examinations, Liver, lungs and etc, while the imuno result wasn't ready. Everything clear, till now. We're waiting for the CT to see her lungs better, but the x-ray found nothing strange.
15 days latter, the biopsy came to shock us again: Triple negative.
I said: Wait a minute! Lobular, triple negative? something's wrong. I went alone to talk with the onc, he didn't gave a damm. Not even for a minute. I was so mad... We were in a hospital specialized in women's health (not only cancer), but the confusion with procedures, excessive bureaucracy and lack of attention of their doctors was really concerning me. I had to achieve everything in that hospital fighting, arguing... felt like I needed to be one step ahead just to make sure they wouldn't neglect her. When the biopsy was done, 30 days after the procedure, we came back to see the onc... But they only had schedule to almost a month latter! So I found a doc who worked at one of the best onc centers in Brazil (ICESP, cancer institute of São Paulo), and I presented her case to him. Since it's a public hospital, really hard to get in, it had a waiting time... maybe 20 days. I had to make the hardest decision of my life: Letting my mom in the same hospital, or take a risk and take her to a WAY BETTER hospital, when we had no time to loose.
I visited the hospital, it was really 10000x better. technology, docs, workers, instalations... In Brazil the public hospitals give us the drugs, but not all hospitals get the latest... In the new one she would have all the best, so I took a shot.
We got lucky, and the appointment in the new hospital came in 4 days (yeah, I was calling and being a pain in the *** of people all day long), almost 15 days before the appointment in the hospital we began everything. I felt Like I did the right choice, she really liked the new hospital better than the other. She felt really bad in the other...
First thing docs did in the new hospital: Review the biopsy, and I didn't had ask ... So I felt like they gave her the attention she wasn't getting in the other place.
It's been almost a month since we went to the new hospital, the biopsy review wasn't ready in the appointment we had 2 days ago, we'll only see the results in the next appointment this monday. (now for sure). In the new hospital she did more complex checkups (torax ct, bone, MRI), and she's also having psychological suport.
Now, I'm really worried, because... In the meantime they are reviewing the biopsy, a infraclavicular lymphnode appeared... And also a parasternal... And I can't stop blaming myself about the choice I made... Cause if we went to the other hospital, she would be having neoadjuvant chemotherapy for like 20 days now (20 days ago there wasn't any clavicular lymph nodes... Clinical avaliation n1)
She did a needle aspiration of these new nodes. They had 1cm each one... Parasternal and infraclavicular means IIIc... and I'm so terrified with this idea of a IIIc triple negative ... She went to my grandma's house today to visit her, and I've been crying all day long... I feel like I will never forgive myself if my choice made her a IIIc instead of a IIx or IIIa. next week we'll begin neoadjuvant chemo, I'll let you guys now what's the result of the biopsy, and also what she'll take in the chemo.
Another thing that worries me, is that docs don't wanna do a pet-ct... They say 'it's not recomended'. I asked them like 4 times, and some even got mad at me. What should I do? Is that really not recomended right now? or should I persist and ask again?
This text is getting to long , and my english is bad... I'm sorry . Just needed to take this from the inside. I promisse the next ones will be shorter and will have more good information to the others!
Thank you girls for being so amazing, I wish you all the best, with all my heart. Some of you made me cry, you made me stronger, you made me a better person. You are the best people in the world
Comments
-
((((OMGosh Bruno))),
What a wonderful, wonderful person you are to be taking such incredible care of your Mom. She is truly blessed to have you as a child! And BTW, your English is PERFECT!
First thing---breath---deep. It IS scary, and I'll repeat what I've said before. It's like learning a new language, one you never wanted to learn, and without a teacher. But it will all make sense soon.
I had to wait 7 weeks (my choice of hospitals) for my surgery at Johns Hopkins in Baltimore, MD and yes, there are times I wonder if I made the right decision. I wanted "the best" hospital availabe for my treatment and JH is considered one of the best in the US. I for one agree with your decision to go to a better hospital. And regarding the lymph nodes, how were they checking before they found the positive ones? Also I was told by my breast surgeon at JH that PET is not a good tool for cancer. I can't remember why now, but either it doesn't show everything (didn't show my positive nodes) or the opposite---too many false positives.
Waiting sometimes is the hardest part. Once you have a firm treatment plan in order you both will feel a better sense of control and can go on from there. Chemo is tough, yes, but doable. There are so many things they have now to combat the nausea, side effects of the past. Plus there are many post chemo treatments available as well.
So, breath deep, stay strong, keep us posted. And be sure to take care of yourself too Bruno.
(((Hugs))),
Sharon
-
Sharon, you're the sweetest! Thank you for those words!
Today was the first day in a long time she's not here with me, so I gave myself the chance to cry and cry and cry and cry some more... I'm also researching information about parp inhibitors, and all kinds of things. It's 9:19 am in São Paulo and I should really be in bed hehe, but when I'm gathering useful info, I feel better, somehow.
When she did the first Ultrasound of the breast, she had no enlarged lymph nodes, but, few weeks later, the new doctor felt axillary nodes (N1). It was like 6 or 7 weeks ago, before she did the biopsy.
About 10 days ago she found a tiny lump in the middle of the chest... We went to the hospital, and they decided to make an ultrasound and a lymph node biopsy (if needed). I asked the doctor what it was looking like in the image, and she said they found 2 nodes enlarged that needed biopsy (a parasternal and infraclavicular). I asked how enlarged they were, and she said they have about 1 cm, but still needed the biopsy. I'm hoping with all my heart those nodes are clear, but I'm concerned. Plus, the waiting these last days it's really torturing me, cause these new nodes appeared, and if she had already started chemo few weeks ago, maybe they wouldn't be enlarged...
But now that I took a deep breath again, if you ask me, I don't regret. The new doctors think it's a ductal carcinoma, the old ones said it's a lobular... And even when the triple neg results came (lobular usually receive hormones), they still didn't care... I think that if she started the treatment in there, it would probably not be the best for her, and probably she would need to change treatment during chemo due to bad responses. Maybe I'm wrong, but I still believe that it was the right thing to do. Triple negatives don't have the options of post chemo other tumors have, so it needs to be treated with all we have during chemo, no chance for mistakes.
Ps: I wanted to do a pet-ct to see the metabolism of the tumor, since it's 8cm, circunscribed with intense desmoplasia ( and I assume that the MRI cannot see the metabolic information of the tumor, only the great 'ball'), and not to diagnose lymph nodes and other stuff. What do you think?
PS2: I forgot to mention, only my mother calls me Bruno, and only when she's mad at me haha Everyone calls me 'Boo'
(In portuguese there's no such a think as BOOOOO as a negative sound haha)*Double the hugs
-
Your mom is lucky to have you! The waiting and diagnosis part is so difficult. Once you have a treatment plan emotions will be a bit better, so hang in there. As far as the nodes, there was probably activity already there, just not enough to show up until the ultrasound, also, all test have different sensitivities.
Keep us updated, there is also a triple negative forum you can check out.
-
Hi again Boo,
Good to hear back from you. Again, TRY not to look back, only forward. You can't change the past only deal with what is to come. If they are doing chemo before surgery the idea is to shrink the tumor (some even disappear completely) and perhaps even do just a lumpectomy vs. a mastectomy. I had multifocal disease so there was no way to do the lumpectomy. Had to have the mx, and I decided on a bilateral which ended up being the right decision, as they found LCIS there during the final pathology.
I don't know all the terms you are referring to regarding the lymph nodes, but it is possible even with node involvement that the nodes did what they are supposed to and stopped the cancer from spreading further in her body. And you can be sure they will throw the "big guns" as they called it for me at her with the chemo so hopefully that will knock down or out any of those nasty buggers hanging around.
Take care,
Sharon
-
I'm sorry, just wrote so fast that I forgot to explain the terms
Parasternal lymph nodes = the ones in the middle of the chest, not in the arm.
Infraclavicular lymph nodes = inferior to the clavicle. For what docs said, infraclavicular or parasternal positive nodes means N3
I don't know if in U.S.A. they use the TNM classification, but it's used in Brazil for staging.
T - stands for tumor size (1 to 4)
N - stands for lymph node envolvement (0 is the lowest, she was 1, now she might be 3 because of the two new nodes localization)
-M stands for distant mets (0 or 1)
That's the info they use to stage.
Desmoplasia: It's a host's response to the tumor, resulting in fibrosis surrounding the bad guy. It's a good thing, but may make the nastie look bigger than it really is in MRI, when actually it's encapsulated. That's why I wanted a pet-ct, so they could see the real tumor metabolism/size information, and not just the big fibrosis ball altogether.
PS: She's coming home tomorrow from my grandma's house, so I'll introduce her to you girls! Thank you all for the kind words, everything is gonna be alright!
-
Ola Bruno,
I just sent you a private message in Portuguese. I'm from Brazil too but have been living in the US since 1990. I'm here to help you navigate the world of breast cancer if you need, and provide you and your mom support.
BTW, your English is indeed perfect!
Hugs,
Marcia
-
Welcome, Bruno and Nana. Nana, I'm so sorry you're going through this. You can do it..it'll be a tough year, but you will get through it. Bruno, you are a wonderful daughter with excellent English.
{{hugs}}
-
I just saw something really good in the National Cancer Institute website:
Stage IIIa : the tumor is larger than 5 centimeters. Cancer has spread to axillary lymph nodes that may be attached to each other or to other structures, or cancer may have spread to lymph nodes near the breastbone.
I think her case applies here, not in IIIc. Yay!
The onc was maybe trying to prepare us. In Brazil some docs are really cold.
Ps: Olá Márcia! Ill Já vou responder sua mensagem!
Ps 2: Thank you all for the words, but Bugs, I'm a son, not a daughter haha
Have you seen the eclipse today girls? Kisses!
-
Bruno -
A cancer diagnosis is such a terrible thing to go through. But it does get better. Once my treatment started I felt like I was finally able to fight back.
There are instances of triple negative lobular cancer but they are rare. We do use the TNM staging in the US. As one who has gone through many PET scans (it was part of an imaging study I participated in) I would not be too concerned about getting a PET. From my experience they are more useful when there are symptoms indicating cancer but none of the other scans can detect anything. But each PET I did showed different areas lit up with lots of glucose activity. They were never the same. I would not rely on a PET at this time. The last one, before surgery, didn't even show activity in my lymph nodes and so it was a shock when they found some much cancer in the axillary nodes during surgery.
One of the items I would seriously push for is neoadjuvant chemo. I don't know if that is a standard consideration in Brazil for Stage III but with the cancer being caught in the parasternal and infracalvicular nodes then I would thing that hitting it with the drugs before surgery would be prudent. And triple neg has a better chance of a complete pathological response than the other subtypes.
Best of luck and you are a wonderful son!
-
Thank you for sharing your experiences about Pet Ana!
Yeah, neoadjuvant chemo is standard in stage III here too, even in stage 2, if the tumor is > than 5 cm.
One thing I was not able to find is: Does the nodes respond so well to neoadjuvant therapy as the primary breast tumor? Is it easier to have pathological response in the tumor than in lymph nodes?
Another thing that worries me, is that her tumor have a lot of desmoplasia, and studies say desmoplasia is associated with less angiogenesis (blood vessels). That's a good thing, cause the desmoplasia reaction encapsulates the tumor with fibrosis, but... Isn't chemo 'road' to the tumor made by blood vessels?
Someone here with desmoplasia? How was the pathological response?
Kisses!
-
Hi Boo and Nana,
For me in hindsite I do wish I had gone the neoadjuvant route. But I was SOOO freaked out when my general surgeon suggested it---I had NEVER heard of such a thing---chemo BEFORE surgery???? Totally freaked me out. I think it was all too much for me to absorb right then, what with just getting my biopsy results. At the time he "thought" my largest tumor (I had multicentric disease) was about 3cm. Large enough right? Ha! Final pathology (again after waiting 7 weeks for surgery w/no treatment in the meanwhile) showed the largest being 6.5cm! Holy crap! Who knows if how small they could have gotten it if I had had chemo BEFORE, not to mention 13 positive nodes with extracapular extension. Sheesh---boggles the mind all these freakin decisions.
I do think that chemo will shrink or destroy cancer in the nodes neoadjuvantly. Who knows, by the time she's done with tx she may be "cancer free" or NED---"no existence of disease". We LOVE NED around here!!!!
Take care,
Sharon
-
I have positive nodes in the internal mammary nodes (I think that its close to parasternal?) and mine shrank from 1-2 cm to 2-3 mm, after 3 dose dense 24 hour drip chemo. 3 left to go, then taxol / carbo. My docs were thrilled. I am brca1 positive. He thinks the nodes only have dead cells in them now because they are so small now, basically normal size. So yes, chemo can work in the nodes. Primary tumor is virtually gone according to the chest ct scan. I know the real results will be after bmx, but Im going with the positive news for now!
-
haha, Bruno! I should have known this with the name BrunO...goodness, I'm sorry! You are a good son to your momma and you still have excellent English!
-
@bkj66 That's reaaaaally really good news! Congratulations, keep positive! Clear nodes, what a good thing!
Hey, I didn't even knew that there's such a thing as a 24 hour drip chemo! How does it work? Is it a catecter os something like that? Can you tell me a little more about it?! And, what drugs they use? It's a shame, but no one here did a brca1/2 test... They say it's a new thing and it's not that helpful... I disagree, I'm considering doing by myself in a private lab. It's made with a blood sample, right? or does it need a piece of the biopsy too?
@Bugs, thats ok haha This is a forum with lots of girls, and a few guys (1%?), so that's ok to make the assumption haha Btw, you're great, and I wish you all the best!
-
The BRCA test is done with a blood sample. In the US they send you to a genetics counselor who collects your family history and determines if there is enough family history to warrant the test. My mom and I did the test jointly. It worked pretty well since she was able to talk to her side of the family, including her cousins in Norway, to get a better history. If I remember right, the counselor came up with a 12% chance that the gene was in our family. She is on Medicard and I was on Regence Blue Shield and both insurances paid for the tests. It's expensive in the US due to a patent filed by Myriad Labs. The lost a court battle to maintain the patent but it's in the appeals process so I think they've been able to maintain the control till the appeal is finished. Anyway, it costs about $3500 here. We both came back positive.
There are benefits to knowing you are positive and figuring out your tx plan. First, the ovaries and fallopian tubes come out as a preventive strike against ovarian cancer with has an increased risk for both BRCA 1 and 2. Another thing that they have found is that BRCA tumors appear to be affected more by the platinum chemos (carboplatin and cisplatin). Depending on the mutation, your risk of other cancers such as pancreatic, colon, prostrate can be increased. So there is a heightened awareness by your onc of other cancers.
-
I'm going to the onc with her in a few hours, I'll keep you girls updated! She just loved all the words you all sent to us! When we get back I'll post everything about her chemo plan.
Thank you girls, thank you thank you thank you!
PS: bkj66, Can you tell me something about your experience with this 24h drip chemo stuff??
Kisses!
-
The 24 hour drip is unusual, haven't heard of it at all other than by my doctor. He says it's easier on the heart, as I have had ac before. I do have to go in the hospital overnight, as they won't let you go home with the drip. I do seem to remember my doc also said the results can be better with the 24 hour drip, but I need to ask him again to refresh my memory! Oh, the drip is with ac.
Hope the appointment went well!
-
Girls, no great news 'till now... They said the biopsy was ready, confirming it's not a lobular, but we'll need to go to another onc in 9 days. The onc is specialized in neoadjuvant chemo, and she'll probably beggin AC-T. Can anyone cheer us? All this waiting is killing us... And also we are so down lately because those lymph nodes are growing and she's IIIc now... Would be great to hear any IIIc stories , specially triple negative. Thank you girls
-
I'm IIIc Bruno. You are going to have to have faith that the chemo is going to kick the crap out of any cancer that's in her body, then more than likely radiation (have they mentioned that yet?). It's called LOCALIZED advanced breast cancer, as long as it hasn't been found in a distant place, even with positive lymph nodes.
I had 4 dose dense tx of A/C followed by 4 dose dense tx of Taxol, then 6 weeks (5 days a week) of radiation. I am not triple negative, so I'm sorry I can't give you any comments there, but if you have ANY questions about the A/C or Taxol I'd be happy to answer them for you. I will say the A/C was the hardest, and the Taxol much more tolerable. Radiation (for me) was a walk in the park after chemo.
(((Hugs to you both))),
Sharon
-
Bruno - I am TN, Stage IIIc. You can read my bio for my full history, but the short version is I did neo-adjuvant chemo, developed resistance to it, had two surgeries to remove lots of disease, found two supraclavicular nodes while doing radiation, and will be starting more chemo in two weeks. The good news...the radiation took care of my nodes, and as of 2 weeks ago, I am still clear of mets, and still Stage IIIc! We are doing the extra chemo as insurance.
Tell your mom to hang in there! After she's done with her chemo, encourage her to shift her diet to one low in fat and to exercise 30 minutes a day, as that seems to be particularly helpful for TN. I also take 4000 D3 a day, melatonin at night, and lots of green tea.
Best of luck - you are a loving son
. -
Hello girls, we just got back from the onc.
The woman scared the hell out of us.
First thing she said to my mama was that 'IIIc ductal triple negative with basal cells is a really hard disease to treat, and that the recurrence is so high for IIIc that it's what's probably going to happen. You got a chance to cure, but it's low."
Ok, so the onc depressed her like hell in 5 minutes, and kind of broke the hopes I was giving her in the last few weeks. Also, she didn't knew what 'desmoplasia' is. I'm so damm angry today!
I asked about Avastin, Parp Inhibitors and CIK immunotherapy, but she just didn't gave a damm, and told us that 'no, it's not an option'.
also, a lymph node appeared near her neck, above the collar bone. That was the worst news for me.
She's starting AC tomorrow.
112 mg of doxorubicin (adriamycin) and 1120 mg of cyclophosphamide. 4 cicles. After the AC she'll do the 'T' and after that she'll have surgery and than radio.
So I asked the onc what antiemetics she's giving her:
Antiemetic: ondansetron (Also known as zofran) 8mg in the vein before chemo + a pill of ondansetron (8mg too) 8/8hours for 3 days after chemo. They also gave her omeprazol (20mg) 1 pill/day first thing in the morning.
They'll also give her dexamethasone to prevent inflamatory processes and to prevent from anaphylactic shock during chemo.
I asked her about the antiemetic EMEND, which I heard of here in the forum and also in the ASCO website, but she told me that it's not given in the public healthcare here in Brazil.
I asked her if she'll take any steroids and she didn't told me anything... Only evasive answers. "Look, this is the standard and if needed I'll prescribe something else".
My girlfriend is in the US now (Orlando), and she told me that if I need any medication (Like EMEND) she can buy it, but I'm afraid I'll need prescription, so... I don't know what to do...
Also, I want to ask her to bring some BIOTENE stuff for mouth sores prevention. What should I order?
Is it really that hard to cure IIIc triple negative? Someone have any stats?
Also, I took her to buy a wig, but it was way too expensive (R$2800, or 1400 US dollars...)
The onc said nothing about D3 vitamin, eating something cold while doing Adriamycin and Neulasta injections...
I feel so lost girls...
-
Ps: what should I do tomorrow after chemmo? Bring her home, give her lots of water and let her in the bed? Give her popsicles during chemo? Can I give her any flavor? Any problem with citric ones?
PS: Thank you for the support. You're all like my personal angels. Thank you thank you thank you!
-
PS2 : They also gave her Lactulona for constipation.
-
Lots of water is a good idea, maybe also gatorade for electrolytes. I felt fine the day after ac, but it hit me 2-4 days after, and then starts to get better. Everyone is different. With neoadjuvent you will be able to see how she responds to chemo, so that is good. Thinking of you and your family. If she does start to feel sick let your doctor know as soon as possible so they can give her more meds. I don't think your girlfriend can get emend in the US wo a prescription. Keep us posted.
-
How did it go Bruno? How is your mom feeling?
-
Hey Bruno, I am so impressed with you and the knowledge you have and how you are taking care of your mom! It is so great to see this. The dexamethasone they are giving her is a steroid, so I don't know why the onc didn't just say that. You can buy wigs in the USA cheaply. Try wigs.com or voguewigs.com or also the american cancer society has a website, they are called TLC, where you can buy wigs and many other supplies she might need. Good luck to your family, I am sorry the doc was so depressing. Sometimes they forget how this hits us.
-
Hello Bruno and all the great contributors on this thread... been following discussion and would like to describe my experiences with chemo so far as it might help your mum Bruno. Am having neo adjuvant chemo 4xFEC followed by 4XTaxotere, which is fairly standard for TNBC in Europe. Last week I took no 6 (ie my 2nd Taxotere...2 to go yippee!!!)
* SEs from one session to the next never identical, there doesn't seem to be a pattern.
* As someone said, 'Dexa' is a steroid, and actually, like Zofran, also helps with the sickness.
*Neulasta, or similar, is not given automatically in Malta, but only when the WBC take longer to recover..so I was only started on these shots (actually Nivestim) when it was seen that WBC hadn't regenerated enough for my second cycle..It might be the same in Brazil.
*If she is up to going out, going on short walk, doing house work, encourage her as the exercise does help.
*Encourage her to sleep as much as she needs to.
*Probably the worst thing I feel I have to deal with is TASTE... nothing tastes good, so expect her not to enjoy the food she normally does for the first week. Pineapple helps.
GOOD LUCK to you and your mum, I think you're doing brilliantly!!!! and try not to concentrate too much on lymph node involvement at this stage...the chemo should attack everything..
-
Hello girls, may this post be helpful to new users curious about chemo...
So, first day... She was nervous like hell. She felt like she was going to explode the moment adriamycin hit her veins.
I tried to calm her down, did a "small picnic" with Quinua and 7 grain brown bread, Nutella, grape juice, water, macadamias nuts, crackers, a pear and a banana. She said "WHERE ARE YOUR EDUCATION? That's so inappropriate!" She called me a 'farofeiro', which in portuguese stands for that kind of person that takes a chicken in the purse to the movies or the beach haha -indeed, but who cares? They said she was going to be 5 hours in there.
We went to the hospital, Chemo is in the 11th floor, and to get there you need a special card. I got there with her and a cousin 15:00 , but she needed to fill the papers, so since you can't enter with any kind of food in there (the picnic was hid haha), I had like 10 minutes to convince the nurses that popsicles are good while giving adriamycin (Yes, they wouldn't let me in if I didn't), and than I had to go to the street and find a place to buy mango popsicles. So, I Found a place, got a new card to allow me to go up again and gave her the popsicles while they gave her adryamicin. And she started the infusion.
I couldn't be with her all the time, only 5 minutes, then more 5 minutes (I stayed 'till they asked me to leave, "please" haha)
She cried a bit, the psychologist talked with her for a while... But anyway, she didn't felt anything DURING chemo.
PS1: I made her drink 3L of water that day, till the night
The entire thing lasted 3 hours, we were back home by 20:00.
She felt fine in the car, so she ate the things I took for her.
Later that night she said a lot of times that her eyes were weird. Nausea, nausea, nausea, nausea, weird sensation behind her eyes... Finally... Vomit... Red vomit. Seeing it happen was like the confirmation that this situation is real, and not some nightmare. I cried lots later that night... My brother saw it red and thought it was blood, and even though I thought it was adriamycin (she haven't had any red food), it scared me like hell. Anyone had the same experience?
-'mom, let's go to the hospital' -No, I'm fine now, really, let me sleep.
Ok... I called the hospital, and they said 'if she vomit again, bring her. If not, let her sleep. Observed her all night, she was doing 'fine'.
Next day, I gave her the medications again, but to no avail... vomit again... 2 times. Couldn't drink or eat anything... third time she tried to vomit, there was nothing in the stomach... So I took her to the hospital with my brother.
They gave her Plasil, omeprazol, dexamethasone, ondansetron and I believe the last one was Haldol.
She felt better from the nausea , she could even drink coconut water leaving the hospital.
Ok... BUT... Today she said she's feeling 'really tense, musculature, breathing, can't sleep'. I supose it's the side effects of the steroid, dexa, right?
She want's to stop with dexa pills, cause she is feeling the 'bad nameless sensation' all day.
Don't know what to do... How do you girls manage this balance... Side effects of steroids x nausea?
Something to sleep? The PS doctor won't prescribe anything cause might be too much medications, and since her chemo dose is dense......
Today I gave her natural Açaí juice , and 2 crackers with nutella, and that's it. She drinks water with the pills but only to make 'em go down the throat...
Ok! Personal messages: Maria: Got it! 'Till now nothing of bad taste, hope it won't come! Only nausea and 'nameless bad sensation'.
@Beacon800: Thank you for the advice! I'm seeing some wigs in the sites, just don't know what to do about sizes! haha
@Bkj66 : Thank you for the hints! She's feeling worst than the first day, better than yesterday... So I guess tomorrow will be better. Now, we're crazy here waiting to see good response. In how many days should we start seeing anything shrink? Is it visible?
Thank you all girls!
-
Hey! Update: I just gave her a papaya, and she ate almost a half! Also a grape popsicle, and she said she's feeling a little better now. Yikes!
in 40 minutes she'll take ondansetron and plasil.
In 1hour and 40 she needed to take dexameteron, but she don't want it cause she said it gives her the 'bad bad bad weird sensation'
Should I give it to her? tomorrow is the 4th day , and doctor's said it's only for 3 days after chemo... But I'm afraid that if she doesn't take it she might get nauseated again...
-
Hi Boo,
I sent you a note on FB too. Sounds as though you both made it through as best you could. I don't recall throwing up red, but the first time I peed it was bright red. Fortunately the nurses were outside the door and saying "if your pee is red, it's not blood it's from the A/C". So at least I knew what that was. I did have a lot of weird se's from A/C. Things tasted bad, and anything chemically like mouthwash, hairspray, made me think of the chemo smell. As far as the dexa, if it's just for the first 3 days don't give it to her on day 4. Also review her symptoms on these specific meds/doses to see if they can make adjustments for next time.
(((Hugs)))
Sharon
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team