Dis Breast Cancer Survivors Part IV - GAGWTA

[Feralpeg]

disneyholic family, while all are welcome here, I hate seeing new arrivals because no one should have to go through this. Hang in there! Prayers and supportive thoughts heading your way!

 

[disneyholic family]

Beth - Yes better to be completely healthy before starting chemo for sure and so sorry for all of the waiting for you! Chemo for me wasn't bad at all but I only had 4 rounds of it and 2 drugs. The only thing that really hit me hard was the day after chemo when I had my neulasta shots...then I would get achy and feel kinda like I had the flu for a day or two for sure, but would eventually bounce back. Everybody is different though.

Best of luck to you!

thanks! the oncologist claims the AC is the hardest of it....that the taxol/carbo will be a stroll in the park once i get past the AC....
i was so sick last week with flu, i'm hoping the AC will be easier the flu made me feel like i'd been beaten up by a gang of thugs....

i guess it's a lot better that i caught the flu before i started than in the middle of the chemo..
and yes, i did have a flu shot, but apparently it missed the mark this year...

a friend who's a doctor said his hospital is jammed full with flu patients right now...and that it takes a good 2 to 4 weeks to get over it....i hope it's only 2....tomorrow marks 14 days....i sure hope i get to start the chemo on monday....they say i have a really really really really fast growing cancer....so all this waiting is worrying....

.

 

[Feralpeg]

disneyholic family, you are doing the same chemo combination I did. The AC was harder than the Taxol/Carbo. Just be sure to take the meds they give you to combat nausea religiously. I never got sick. Mostly, I just wanted to sleep. If you do start to feel really bad, go in for fluids. It really helps. Once you get to the Taxol, it's all downhill. No need to take nausea meds with it. I always had mine on a Tuesday. On Friday, I was achy. Only one day, but the same each time. In general, Taxol wasn't a big deal at all. Just ask if you have any questions. I know it seems like a long haul ahead, at this point, but it really goes by very quickly.

 

[disneyholic family]

disneyholic family, you are doing the same chemo combination I did. The AC was harder than the Taxol/Carbo. Just be sure to take the meds they give you to combat nausea religiously. I never got sick. Mostly, I just wanted to sleep. If you do start to feel really bad, go in for fluids. It really helps. Once you get to the Taxol, it's all downhill. No need to take nausea meds with it. I always had mine on a Tuesday. On Friday, I was achy. Only one day, but the same each time. In general, Taxol wasn't a big deal at all. Just ask if you have any questions. I know it seems like a long haul ahead, at this point, but it really goes by very quickly.

thanks for the pep talks everyone!!!! it really helps!!!!!!!!!!!!

 

[fortwildernessishome]

thanks! the oncologist claims the AC is the hardest of it....that the taxol/carbo will be a stroll in the park once i get past the AC....
i was so sick last week with flu, i'm hoping the AC will be easier the flu made me feel like i'd been beaten up by a gang of thugs....

i guess it's a lot better that i caught the flu before i started than in the middle of the chemo..
and yes, i did have a flu shot, but apparently it missed the mark this year...

a friend who's a doctor said his hospital is jammed full with flu patients right now...and that it takes a good 2 to 4 weeks to get over it....i hope it's only 2....tomorrow marks 14 days....i sure hope i get to start the chemo on monday....they say i have a really really really really fast growing cancer....so all this waiting is worrying....

.

Just want to wish you the best of luck. I had taxol and carboplatin for my ovarian cancer and while it did knock me down, I bounced back pretty well in a few days.
What I really disliked was it was an all day treatment, pretty much 9-5 and I couldn't sleep to pass the time like many people were able to do. Thank goodness for my laptop!!
Sending good thoughts your way!

 

[Pea-n-Me]

GAGWTA..
well this is new for me...i start chemo on wednesday....i was supposed to start tomorrow, but i caught the flu last week and they want to give me another two days to recover before starting...
i start with AC (four rounds - to be administered every other week)
that will be followed by 12 weekly rounds of combined taxol and carbo....

and hopefully that will do the trick!!!
then surgery/radiation...

well i'm not starting tomorrow - still have leftover flu.....now on day 10 of the flu...they want to wait for me to be completely well...
so they've moved the chemo from tomorrow to next monday.....that way i can get blood tests on sunday to see if i'm healthy again...

my chemo is as follows:

AC every two weeks for 4 rounds..
that will be followed by 12 weekly rounds of taxol + carbo.....i'm getting the carbo thrown in since i'm triple negative...

hopefully waiting until next week to start chemo is ok..

as it is, i've been waiting a month since i was diagnosed...all this waiting is hard on the nerves!!!!

.

You poor thing, having the flu and then going right into chemo. Ugh. Make sure you conserve your energy as both of those have the tendency to wipe you out. Let friends and family help you. The effects of chemo are cumulative, so you will feel more exhausted as you go. If people offer to cook for you and your family, let them, and freeze things. Or let them clean, help with the kids, whatever they want to do! I was very resistant to that at first, as I'm used to doing things myself, but after a time I finally relented. I had to. Someday you can pay it forward.

My cancer was triple negative, too, with two nodes positive, and also very fast growing/aggresive. Interesting the AC then TC. I just had the AC followed by T. They must've changed it. Anyway, my initial diagnosis was in 2003. Treatment was rough, but I've been cancer free (knock on wood) since then, so going on fifteen years (I always liked to hear the good stories!) which really seems amazing since it feels like it was just yesterday. Emotionally it can be difficult, which is why this thread was started in the first place, so we're here day or night to listen and support if you need an ear. It's helpful to talk to people who've been through it.

 

[disneyholic family]

Just want to wish you the best of luck. I had taxol and carboplatin for my ovarian cancer and while it did knock me down, I bounced back pretty well in a few days.
What I really disliked was it was an all day treatment, pretty much 9-5 and I couldn't sleep to pass the time like many people were able to do. Thank goodness for my laptop!!
Sending good thoughts your way!

they told me the AC will take 3 hours and the TC will be 5 hours...
i'm starting (hopefully) on monday at 3 pm...
the scheduling nurse told me that once i start and am on the inside so to speak, she'll be able to get me appointments that are earlier in the day...
obviously 3 in the afternoon will be too late for TC..
the chemo place is open until 8 pm so 3 in the afternoon will be ok for the first one..

supposedly a social worker will meet us at our first one to explain social security (our equivalent) and taxes to us.....
we don't live in the US - apparently if you have what's called a "major illness", you don't pay taxes or social security...not sure what else...they'll let us know i hope...
the insurance thing is a bit confusing...we have kind of socialized medicine here, but not everything is covered....so you have to navigate between public and private insurance...

also while you have neulasta in the US, we have neulastim....the same but different....from what i understand neulasta now comes in an armpatch type thing in the US...
here we still have a syringe injection.....so i have to go back the next day to have them inject me.....it's not too far away...about a 20 minute drive to the hospital where i'm getting the chemo...so that will be ok...

on the bright side of all the delays - i've gotten to speak with several of the nurses there - they're the ones who made the decisions about delaying me..
they all sound really nice and responsible....so that gave me a good feeling...

.

 

[disneyholic family]

You poor thing, having the flu and then going right into chemo. Ugh. Make sure you conserve your energy as both of those have the tendency to wipe you out. Let friends and family help you. The effects of chemo are cumulative, so you will feel more exhausted as you go. If people offer to cook for you and your family, let them, and freeze things. Or let them clean, help with the kids, whatever they want to do! I was very resistant to that at first, as I'm used to doing things myself, but after a time I finally relented. I had to. Someday you can pay it forward.

My cancer was triple negative, too, with two nodes positive, and also very fast growing/aggresive. Interesting the AC then TC. I just had the AC followed by T. They must've changed it. Anyway, my initial diagnosis was in 2003. Treatment was rough, but I've been cancer free (knock on wood) since then, so going on fifteen years (I always liked to hear the good stories!) which really seems amazing since it feels like it was just yesterday. Emotionally it can be difficult, which is why this thread was started in the first place, so we're here day or night to listen and support if you need an ear. It's helpful to talk to people who've been through it.

what does 'two nodes positive' mean?
they did a fish on my her2, but sadly i was negative on that too....

i'm happy to hear as many positive stories as i can.... i have 3 very bad stories within 1 block of me, so i try not to think about the 3 of them....

on the other hand, i have a very positive story in my sister who has had small cell lung cancer, breast cancer and ovarian cancer and is still alive 14 years after the first diagnosis....so that's pretty darn impressive and uplifting....so i'll keep her story in mind!!

i don't know about the addition of carbo...
my mom had only AC and T, but she had triple positive, so her's was a different case..
my sister had triple negative and i'm pretty sure she also had carbo too..

i think they want to go as aggressive as possible since it is triple negative - limiting the treatment options..
although i've been reading the clinical trials and i see they're now trying parp-inhibitors on triple negative too....so that's good...any new tricks up their sleeves is a good thing..

.

 

[ThistleMae]

well i'm not starting tomorrow - still have leftover flu.....now on day 10 of the flu...they want to wait for me to be completely well...
so they've moved the chemo from tomorrow to next monday.....that way i can get blood tests on sunday to see if i'm healthy again...

my chemo is as follows:

AC every two weeks for 4 rounds..
that will be followed by 12 weekly rounds of taxol + carbo.....i'm getting the carbo thrown in since i'm triple negative...

hopefully waiting until next week to start chemo is ok..

as it is, i've been waiting a month since i was diagnosed...all this waiting is hard on the nerves!!!!

.

It is very nerve racking....for sure! I wondered about the waiting too, worrying that things were growing as the delays occurred. I do believe they do the best they can in planning for treatment. Being sick with the flu is not good for your body considering what they will be introducing to it. Have faith in your doctor's and try to take your mind off things the best you can. For me, reading was a good distraction, as well as being on these boards. Our thoughts are with you.

 

[Pea-n-Me]

what does 'two nodes positive' mean?
they did a fish on my her2, but sadly i was negative on that too....

i'm happy to hear as many positive stories as i can.... i have 3 very bad stories within 1 block of me, so i try not to think about the 3 of them....

on the other hand, i have a very positive story in my sister who has had small cell lung cancer, breast cancer and ovarian cancer and is still alive 14 years after the first diagnosis....so that's pretty darn impressive and uplifting....so i'll keep her story in mind!!

i don't know about the addition of carbo...
my mom had only AC and T, but she had triple positive, so her's was a different case..
my sister had triple negative and i'm pretty sure she also had carbo too..

i think they want to go as aggressive as possible since it is triple negative - limiting the treatment options..
although i've been reading the clinical trials and i see they're now trying parp-inhibitors on triple negative too....so that's good...any new tricks up their sleeves is a good thing..

.

It means that there was local spread to two of my lymph nodes (from the invasive tumor itself), which means cancer was in my bloodstream (which means it could spread to distant organs; that is what chemo is designed to treat). I take it your tumor was > 3cm which is why you're having chemo first, then doing surgery. If you have surgery before you have chemo, they usually do a sentinel node biopsy first. But in your case, you'll have chemo first so idk if they'll do it, it's something you can ask about. A friend of mine had a 7cm tumor and she never knew if her nodes were positive because she had chemo first, which could, from what I understand, kill off any cancerous cells from lymph nodes. But they treat those larger tumors aggressively, anyway, so it might be a moot point of whether the nodes were positive or not. (All of those things go into staging - tumor size, node status, etc.)

Yes, with triple negative they have to hit it with everything they've got at the outset, since that's it. Have you had gene testing yet? Or are they planning to do it? It sounds like you have a strong family history.

 

[disneyholic family]

It means that there was local spread to two of my lymph nodes (from the invasive tumor itself), which means cancer was in my bloodstream (which means it could spread to distant organs; that is what chemo is designed to treat). I take it your tumor was > 3cm which is why you're having chemo first, then doing surgery. If you have surgery before you have chemo, they usually do a sentinel node biopsy first. But in your case, you'll have chemo first so idk if they'll do it, it's something you can ask about. A friend of mine had a 7cm tumor and she never knew if her nodes were positive because she had chemo first, which could, from what I understand, kill off any cancerous cells from lymph nodes. But they treat those larger tumors aggressively, anyway, so it might be a moot point of whether the nodes were positive or not. (All of those things go into staging - tumor size, node status, etc.)

Yes, with triple negative they have to hit it with everything they've got at the outset, since that's it. Have you had gene testing yet? Or are they planning to do it? It sounds like you have a strong family history.

i don't know about the nodes....they see one lymph node that looks enlarged, but in the biopsy, i think the guy missed the lymph node and just got the fatty tissue around it (which was also positive for the cancer - so the cancer is spread beyond the tumor for sure...)...
the tumor itself is somewhere in the vicinity of 4 to 5 cm.....so i guess they consider it pretty big..

and with a lot of involvement in the surrounding tissue....

they did a pet scan which came up negative....so that's good...
hopefully, the cancer will react as it's supposed to ..

i was tested a number of years ago for BRCA....or maybe just the particular mutation my sister has on the BRCA2 gene...
but i was negative for her mutation (assuming they tested correctly)..

on sunday they're going to do a broader gene study....my cousin recently tested positive for mutations on the ATM and BRIP1 genes....so maybe i have those...

hopefully they'll do a more complete study on sunday than they did the last time...

and yes, we have a very strong history of cancer in the family....
my sister's BRCA2 mutation is from my dad's side...
but the vast majority of the cancer is on my mom's side....until now they weren't able to find a mutation on that side of the family, but that doesn't mean there isn't one...they just weren't able to test for it yet....but perhaps the ones they found in my cousin will turn out to be THE mutations on my mom's side and then they'll finally be able to test everyone...which will be a great relief for all....

 

[disneyholic family]

It is very nerve racking....for sure! I wondered about the waiting too, worrying that things were growing as the delays occurred. I do believe they do the best they can in planning for treatment. Being sick with the flu is not good for your body considering what they will be introducing to it. Have faith in your doctor's and try to take your mind off things the best you can. For me, reading was a good distraction, as well as being on these boards. Our thoughts are with you.

thanks! yes, i read on my iphone kindle app....pretty much non-stop....great invention....no matter how long a wait you have you're never bored!!!!
i have kindle unlimited so i just keep reading...a book or two a day....mostly trash, but it's exactly what my mind needs....mindless trash!!

and yes, i love the disboards (as you can tell by how many posts i've managed over my 16 years on the boards....)..
and i love the podcasters - i was lucky enough to meet several of them a few years back...really really really nice people!!

and i especially love this thread....sort of a virtual support group which is very nice...
i don't know if they have real support groups where i live ....my sister lives in the US and she's gone to her support group since she was first diagnosed and really feels it's helped her...

i have reached out to a few friends i know who've had breast cancer...so that's been helpful too...also got recommendations from them....for oncologists/surgeons..
i've already picked my surgeon though i know the surgery is a long way away...but i went to meet with the two top recommended surgeons....really liked one of them, so he's the guy.....he's also more amenable to my point of view (double mastectomy)...but that's putting the cart before the horse....first i have to get this chemo going and then i can worry about the surgery...
.

 

[Dancind]

Disneyholic, best of luck to you during your chemo. Are you in Canada? Sounds like they treat you very well during major illness. Having someone help you through the logistics is so valuable.

Well, the chest CT was not fun. I had hives for two weeks. But no signs of cancer, pulmonary embolism or equally bad things. I just still don't know what's causing my cough. Back for a liver MRI next week, probably just a hemangioma but got to do those tests!

Six years out for the first tumor now, three for the second. Seems unfair to still be doing tests, does it not?

Daughter is hanging in there. We have decided to get her an Emotional Support Animal, found a six month old extra sweet hand raised kitten. She tried adopting an older cat, but could not find a kitty that wasn't too independent. At least I'm going to be a Grandma, of a kitty!

And now from the other side, my 88 yo Dad's step daughter wants him OUT. Problem is, they live in the middle of nowhere, MT, and I think his pension pays their mortgage and only car. Fun times.

 

[disneyholic family]

Disneyholic, best of luck to you during your chemo. Are you in Canada? Sounds like they treat you very well during major illness. Having someone help you through the logistics is so valuable.

Well, the chest CT was not fun. I had hives for two weeks. But no signs of cancer, pulmonary embolism or equally bad things. I just still don't know what's causing my cough. Back for a liver MRI next week, probably just a hemangioma but got to do those tests!

Six years out for the first tumor now, three for the second. Seems unfair to still be doing tests, does it not?

Daughter is hanging in there. We have decided to get her an Emotional Support Animal, found a six month old extra sweet hand raised kitten. She tried adopting an older cat, but could not find a kitty that wasn't too independent. At least I'm going to be a Grandma, of a kitty!

And now from the other side, my 88 yo Dad's step daughter wants him OUT. Problem is, they live in the middle of nowhere, MT, and I think his pension pays their mortgage and only car. Fun times.

oy....that's a really difficult situation with your Dad....he's in montana? is that far from you?
i'm not in canada, i'm in Israel...an american who's lived in israel for many many years.....so i have distance issues from my family (in michigan)...
my 90 year old mom spends about half her time here and the other half in michigan (near my sister)...
but now i don't think i can take care of her for a while...but she's planning on coming back here soon...she's legally blind, but still lives on her own...but whenever she needs help i drive over to her (about a half hour away)...but i don't think i'll be able to do that once i start this chemo....i don't know..
i'm kind of hoping she'll stay in michigan for a while longer...but i can't tell her that.....

are cats good as emotional support animals? are they specially trained for that?

why did you get hives from the chest CT? a reaction to the contrast they use?

.

 

[Dancind]

Hi Beth, we are in Albuquerque NM, so it's about 1000 miles. And it's winter. I have a brother living in Idaho, but he doesn't have a car.

Kudos to your Mom for being able to travel like that still! But maybe you need to let her know what's going on, and you might not be able to help out.

Cats can be ESA animals, but not trained. This is partly a case of having an affectionate animal, and partly having something to be responsible for beside herself.

Yes, hives from the contrast dye! I'm a reactive person anyway, and this is a fairly common thing to react to. Now with the MRI they are talking about medication to reduce the reaction but from what I understand, it's a completely different type of contrast.

 

[disneyholic family]

Hi Beth, we are in Albuquerque NM, so it's about 1000 miles. And it's winter. I have a brother living in Idaho, but he doesn't have a car.

Kudos to your Mom for being able to travel like that still! But maybe you need to let her know what's going on, and you might not be able to help out.

Cats can be ESA animals, but not trained. This is partly a case of having an affectionate animal, and partly having something to be responsible for beside herself.

Yes, hives from the contrast dye! I'm a reactive person anyway, and this is a fairly common thing to react to. Now with the MRI they are talking about medication to reduce the reaction but from what I understand, it's a completely different type of contrast.

yes, the MRI contrast is completely different....i've had zillions of MRIs and never reacted to the contrast....
on the other hand, i've never been permitted to get the contrast for CTs (i only have half a thyroid and the CT contrast is bad for people with thyroid issues)...

the contrast used for MRIs is Gadolinium ...it's my understanding that far fewer people react to Gadolinium than to the CT contrast, which is an iodine based substance...

so hopefully, you won't have any issues with the MRI...

.

 

[Dancind]

Well, that might explain a bit of it. I have thyroid issues. Noticed my goiter seems larger.

 

[ThistleMae]

thanks! yes, i read on my iphone kindle app....pretty much non-stop....great invention....no matter how long a wait you have you're never bored!!!!
i have kindle unlimited so i just keep reading...a book or two a day....mostly trash, but it's exactly what my mind needs....mindless trash!!

and yes, i love the disboards (as you can tell by how many posts i've managed over my 16 years on the boards....)..
and i love the podcasters - i was lucky enough to meet several of them a few years back...really really really nice people!!

and i especially love this thread....sort of a virtual support group which is very nice...
i don't know if they have real support groups where i live ....my sister lives in the US and she's gone to her support group since she was first diagnosed and really feels it's helped her...

i have reached out to a few friends i know who've had breast cancer...so that's been helpful too...also got recommendations from them....for oncologists/surgeons..
i've already picked my surgeon though i know the surgery is a long way away...but i went to meet with the two top recommended surgeons....really liked one of them, so he's the guy.....he's also more amenable to my point of view (double mastectomy)...but that's putting the cart before the horse....first i have to get this chemo going and then i can worry about the surgery...
.

Good you have your Kindle to occupy you. I found the gals in radiation so nice. It made the treatments so much better. I just read The Mountain Between Us....read it in one day....really good! And yes, take one thing at a time, don't think too far ahead. But having gone through it, it's hard to do. I did think a lot about dying and the one thing I found the more I thought about it was why worry about it....if it's going to happen, it's going to happen. I didn't want to make my life more stressful thinking the worst. I had no support in my small community or from family, so I was glad to find this thread, but didn't find it until after my treatment. Obviously I'm still looking and I do worry a bit every time I go for an exam. But being in here....helps!

 

[fortwildernessishome]

they told me the AC will take 3 hours and the TC will be 5 hours...
i'm starting (hopefully) on monday at 3 pm...
the scheduling nurse told me that once i start and am on the inside so to speak, she'll be able to get me appointments that are earlier in the day...
obviously 3 in the afternoon will be too late for TC..
the chemo place is open until 8 pm so 3 in the afternoon will be ok for the first one..

supposedly a social worker will meet us at our first one to explain social security (our equivalent) and taxes to us.....
we don't live in the US - apparently if you have what's called a "major illness", you don't pay taxes or social security...not sure what else...they'll let us know i hope...
the insurance thing is a bit confusing...we have kind of socialized medicine here, but not everything is covered....so you have to navigate between public and private insurance...

also while you have neulasta in the US, we have neulastim....the same but different....from what i understand neulasta now comes in an armpatch type thing in the US...
here we still have a syringe injection.....so i have to go back the next day to have them inject me.....it's not too far away...about a 20 minute drive to the hospital where i'm getting the chemo...so that will be ok...

on the bright side of all the delays - i've gotten to speak with several of the nurses there - they're the ones who made the decisions about delaying me..
they all sound really nice and responsible....so that gave me a good feeling...

.

I wish you the very best and have my fingers crossed that you will be able to begin your treatment on Monday.

 

[Dancind]

If you haven't already, read Little Fires Everywhere. Can't remember when a book last moved and enthralled me like that one.