Dis Breast Cancer Survivors Part IV - GAGWTA

[3threebabies]

CaleCakes, I am glad the analogy helped and you have been given a lot of good advice. Dose dense adriamycin (4 drips every 2 weeks) usually takes hair between 2nd and 3rd dose. Taxol also affects hair but not to the same extent as adriamycin. I took dose dense taxol as well, but most regimens switched to 12 weeklies to reduce side effects. I got my hair cut ASAP after we scheduled my 1st chemo. My hairdresser did a fantastic job creating a style that helped with the transition.

Adriamycin is one of the strongest 1st line breast cancer chemotherapy agents, and it is used for several other types of cancer after treatments fail.

 

[3threebabies]

Ugh. Hit send too early again. I need to stop posting in bed!

Adriamycin is rough. Really rough. After decades of research and numerous new to market therapies, “the red devil” (an accurate description due to its color and toxicity) is still prescribed for most early stage IDC chemo regimens. The chemo nurses have to be very careful with the “push“—it doesn’t drip from an IV like most chemo. It is great that your port will be implanted before starting chemo. Ports and Zofran/ondansetron are probably a chemo patient’s best friends.

 

[CaleCakes]

I'm on a different treatment regimen than you, but I am on doxyrubicin. The first time they administer your chemo they will usually watch you closely to look for any signs of a reaction. I did have a reaction the first time I got it. I got very hot and flushed and had some difficulty breathing. They shut off the infusion and gave me high doses of benedryl which resolved the issues quickly. After I'd returned to normal, they checked with my oncologist who said to try me again but at a slower infusion rate. That solved the issue and now I don't have any side effects while I'm receiving it and I'm able to receive it at the normal infusion rate.

Everyone is different in how they react, however, so just because I reacted doesn't mean you will. If you feel at all unusual once the infusion starts, be sure to let someone know immediately, It came on quite quickly with me, but they can usually address any of those types of reactions quickly and still continue with treatment.

During my first rounds of chemo years ago, I probably started losing hair around 3-4 weeks after my first infusion if I recall correctly.

Thank you for sharing your experience when you first got the infusion. I do worry that I will be so nervous my anxiety will cause a reaction. I don't even know if that is a thing. I will be sure to tell someone right away if I am feeling unusual.

I was speaking the DHs mother today about the regiment. She had breast cancer 30 years ago and it she believes she was on the andriamycin. She recalls vomiting after the first treatment and didn't have any other reactions other than sleepiness after that. I am really hoping I have very few if any side effects.

 

[CaleCakes]

CaleCakes, I am glad the analogy helped and you have been given a lot of good advice. Dose dense adriamycin (4 drips every 2 weeks) usually takes hair between 2nd and 3rd dose. Taxol also affects hair but not to the same extent as adriamycin. I took dose dense taxol as well, but most regimens switched to 12 weeklies to reduce side effects. I got my hair cut ASAP after we scheduled my 1st chemo. My hairdresser did a fantastic job creating a style that helped with the transition.

Adriamycin is one of the strongest 1st line breast cancer chemotherapy agents, and it is used for several other types of cancer after treatments fail.

I have an appointment tomorrow with the oncologist to go over the treatment plan again. I have a list of questions to ask, most have been answered by you all in just the last few days. I can't thank you all enough. The current plan is as you described with every 2 weeks for 8 weeks with adriamycin then 12 of the taxol. I've been tossing around the idea of getting a wig or just scarves. I don't go many places as it is and I spoke with my bosses about not having to have my zoom camera on during meetings. I might get 1 for if we go out to dinner. Did you get a wig?

 

[Pea-n-Me]

Wigs are covered by insurance! They’re considered a “hair replacement”, not “cosmetic”. (I forget the exact term, sorry!) I think all you need is a prescription. You can get them at the cancer hospital gift shop, usually (which also has some nice scarves and caps), or you can go to a store that specializes in wigs. I had my chemo in winter, too, and my bald head got cold! My favorite things were the soft cotton caps they sold - one had a bandana over it and that was my favorite. Even though I wore the wigs, I found my head was a little sore, so as soon as I walked in my door, that thing came off and a soft cap went on! For warmth just as much as (style is the wrong word, head not straight on today apparently) - comfort!

Before you get your Adriamycin and Cytoxin (AC) as well as the taxol, later, they give you a bunch of pre-medications to prevent things like nausea/vomiting (zofran), anxiety (Ativan), and an allergic reaction (steroid). As I mentioned earlier, it’s a pretty strong and effective concoction. Some of that can still happen, but not to the degree, usually, that it happened in the past, before that was routine.

Remember when you start chemo to try to stay away from some of your favorite foods for the time being, as you can develop “negative associations” with those foods if eaten too close to when you get your chemo. I felt great after my first chemo and DH took me out for lunch. Trying to keep it healthy, I saw grilled vegetables where we were and thought those would be good, forgetting the recommendations rather quickly. Later, I still liked grilled vegetables, except for peppers, but I can’t eat a lot of them anymore, just a little.

 

[3threebabies]

I got a wig. It looked almost exactly like my chemo haircut. I lived in CT and had chemo all winter. I slept in one of those basic knit head covers from American Cancer Society to help me stay warm and got a stocking cap for outdoors. By spring I mostly wore a scarf and summer was “tiny hairs” as my son called them. I also had a “hat wig.” I can’t really think of a better way to describe. It was a blue ball cap with an attached pony tail. My friend who had chemo a few years ago got a fun colored wig in addition to a traditional one.

Remember when you start chemo to try to stay away from some of your favorite foods for the time being, as you can develop “negative associations” with those foods if eaten too close to when you get your chemo. I felt great after my first chemo and DH took me out for lunch. Trying to keep it healthy, I saw grilled vegetables where we were and thought those would be good, forgetting the recommendations rather quickly. Later, I still liked grilled vegetables, except for peppers, but I can’t eat a lot of them anymore, just a little.

Popovers for meit was so upsetting. We ate them with lunch after my 2nd chemo. Even bought extra to take home. I couldn't eat them for about 2 years. I would get nauseous just thinking about popovers.

 

[CaleCakes]

I had no idea wigs could be covered by insurance- thanks pea-n-me! My oncologist said she would write me a script when I was ready. Great to know. I have been looking around online for scarfs and head coverings. I found Headcovers Unlimited which is a Texas company not far from me, but they don't have a store just online. I found a few on their website I think I'll order. I still have some time before all of this starts. When I visited with the oncologist this week she said chemo will start 4 weeks after surgery, so that is on or around Feb 9th. I have an appointment with her that day but I am not sure I will start that day or the following week. The port gets placed next week on the 27th. I am feeling anxious to get things started so they can be over with.
I also had the endoscopic ultrasound yesterday. The GI doc did not end up doing a biopsy and I am not sure how I feel about that. He said the cyst as he called it was less than 1 mm, round in shape with clear margins. He didn't feel it was worth the risk of possibly causing pancreatitis to biopsy it. I want to trust that was the right call but given my current diagnosis of triple negative BC and the brca 1 mutation I am still concerned. I will call the pancreatic oncologist back on Monday to discuss.

 

[ZellyB]

I wore a wig when I lost my hair. It looked so much like my real hair that I had a large number of co-workers who had no idea I had cancer nor that I'd lost my hair. The wig can be a bit uncomfortable after wearing it for long periods though. My scalp would get itchy and then my scalp over time also just got sensitive to touch, so unless I was going out in public (I just really didn't want to get those looks that you get). I either just went bald or wore head scarves or hats. I found these great scarves that my mom was able to replicate that were silky on the outside but had cotton on the inside to go against my scalp. They had elastic at the base that helped it fit my head closely. They were the best! I found really pretty materials for them and I actually ended up liking how I looked in them. I do have wigs for myself this time should I eventually lose my hair, but I really think I'll stick more with scarves even out in public. They are just so much more comfortable. I'll look around and see if I can find them or something similar to show you.

ETA: They looked alot like these, but this doesn't say for sure if they are lined with cotton or not.

https://www.headcovers.com/so-simple-scarves-pretied-scarf-headcovering/

 

[Pea-n-Me]

I had no idea wigs could be covered by insurance- thanks pea-n-me! My oncologist said she would write me a script when I was ready. Great to know. I have been looking around online for scarfs and head coverings. I found Headcovers Unlimited which is a Texas company not far from me, but they don't have a store just online. I found a few on their website I think I'll order. I still have some time before all of this starts. When I visited with the oncologist this week she said chemo will start 4 weeks after surgery, so that is on or around Feb 9th. I have an appointment with her that day but I am not sure I will start that day or the following week. The port gets placed next week on the 27th. I am feeling anxious to get things started so they can be over with.
I also had the endoscopic ultrasound yesterday. The GI doc did not end up doing a biopsy and I am not sure how I feel about that. He said the cyst as he called it was less than 1 mm, round in shape with clear margins. He didn't feel it was worth the risk of possibly causing pancreatitis to biopsy it. I want to trust that was the right call but given my current diagnosis of triple negative BC and the brca 1 mutation I am still concerned. I will call the pancreatic oncologist back on Monday to discuss.

I understand that was probably disappointing, because you want to sort of “wrap things up” with all of this, but remember, they take an oath to “first do no harm”. These doctors get used to seeing things that are either worrisome, or not, and from the description of it, and even (from past experience w my mom’s stable - never went anywhere - pancreatic lesion) features of it (where it is, ie having lesions on one end of the pancreas is often more volatile than the other; size; shape, etc.) all led to feelings that it was safe to simply watch it for a while. When someone has so many issues going on (surgery, port placement, chemo, etc.) they don’t want to add one more potential problem (infection, bleeding, perforation, etc.) to the list. I see these issues all the time as a nurse. So I would offer that, I think you should trust that it was the right call, and be assured that they will continue to keep an eye on it.

 

[Pea-n-Me]

He said the cyst as he called it was less than 1 mm, round in shape with clear margins.

Remember, too, that very often cancers aren’t nice and small and perfectly round, etc. They’re ugly. And splotchy. And sort of alarming when seen. I have had things biopsied twice that were nice like that and both were benign. I realized the difference when I viewed my own cancer and everyone was running around saying I needed a biopsy right away! Ugly.

 

[CaleCakes]

I understand that was probably disappointing, because you want to sort of “wrap things up” with all of this, but remember, they take an oath to “first do no harm”. These doctors get used to seeing things that are either worrisome, or not, and from the description of it, and even (from past experience w my mom’s stable - never went anywhere - pancreatic lesion) features of it (where it is, ie having lesions on one end of the pancreas is often more volatile than the other; size; shape, etc.) all led to feelings that it was safe to simply watch it for a while. When someone has so many issues going on (surgery, port placement, chemo, etc.) they don’t want to add one more potential problem (infection, bleeding, perforation, etc.) to the list. I see these issues all the time as a nurse. So I would offer that, I think you should trust that it was the right call, and be assured that they will continue to keep an eye on it.

Thank you for taking the time to talk me down. I have been feeling particularly uneasy this past week since having the EUS. I had a lengthy chat with my breast surgeon today and she always puts me at ease. I am not usually this neurotic or paranoid, I just think a lot is coming so fast and keeps changing. My brain keeps skipping the part about why chemo is such an important piece. I think after my conversation today I have finally got it ingrained why this is the logical next step. So on that note I will be having my port placed tomorrow morning. Although I am not thrilled I am ready to accept it's happening. I am thinking happy thoughts of a big vacation come fall when all of this is behind me.
On another note, my husband's mother sent me a fun pink wig. Everyone in the house has taken a turn trying it on and it has been kind of fun. My DD4 looks the best in it .

 

[snappy]

Best of luck with the port placement today. I love your story about the fun pink wig. You are handling this better than you realize. Truly.

 

[ZellyB]

@CaleCakes I hope all went well with your port placement.

 

[CaleCakes]

Port placement went ok I guess. The doc was trying to put it on the left side but was having trouble in the vein, something about calcification- I need to follow up and get more info as my husband took the call after the procedure. So they ended up on the right but instantly as I was waking up I had discomfort on the left side of my neck. I don't know what kind of anesthesia they used this time but it was definitely different than for the lumpectomy because I was very out of it, my husband said he was taken a back when he saw me. I can't remember going from the pre op room to the OR which is not usual with any anesthesia I've had in the past so whatever they gave me was very strong. I didn't sleep much last night I was pretty nervous about actually falling asleep and having an issue. I did sleep some this morning but I had a long zoom for work that I had to be a part of. I'm really distracted when it comes to work tasks lately, I think I mentioned that before. I actually almost quit today. I know I am probably just being dramatic and overwhelmed. The left side of my neck is still sore and the right isn't bad but I can't tell if I am having little spasms or if I'm feeling the tightness of the glue. I'm moving pretty slow regardless.

The other day when I was feeling overwhelmed before I talked to my doctor I had been stuck in standstill traffic for at least 40 mins. I was super hungry once it cleared and I went a little out of my way to go to a particular food truck where I ordered a cheeseburger and a peanut butter iced coffee. I saw this sign on the counter and I felt like I needed to see it. Between this and my unofficial theme song of Rodney Atkins If You're Going Through Hell I keep telling myself "you will do this".

Darn it how do I rotate it

 

[snappy]

Thanks for the update, Calecakes. Sorry you are in pain.

Seeing that sign sounds like something we have called here a Godwink. This definitively qualifies.

 

[ZellyB]

Sorry that you are suffering some pain from the placement and that they had trouble. I hope that it resolves soon for you, Also, if a cancer diagnosis isn't a good reason to be dramatic and overwhelmed, I frankly don't know what is. You get to feel how you feel. Full.stop.

And, yes, I do think sometimes we are destined to see those things that give us a little boost to get through. I'm glad you found yours...and a peanut butter iced coffee sounds delicious!

 

[Pea-n-Me]

Glad that’s over with @CaleCakes! It’s not unusual to have a fair amount of pain after procedures like these. It does stink, though. Do what you have to do to stay comfortable, if you can. And cross that off the list!

 

[CaleCakes]

Thank you all for the get well wishes. I'd say by Friday even I was feeling much better. I was even trusted to run errands by myself over the weekend! Come Sunday I started to get a headcold with congestion and a little cough. No fever or anything but that first sneeze was terrifying . Still feeling crumby today but on the mend. Got the call to schedule my first infusion- Feb 8th. I feel somewhat relieved knowing the next step is in motion and in a few months this part will in the past. The center sent me a bunch of medications through the mail, the anti nausea stuff and the lidocaine topical. The nurse today didn't tell me the bring it or use the lidocaine as prep but I remember reading that so I'll have to call back and check. She did say to start taking Claritin this weekend for the neulasta shot. Anyone have experience with neulasta injection?
I'll be having my fav foods the rest of this week and taking your tips to stay away from my favs while on therapy. Any other foods I should avoid not necessarily that I might end up disliking for years but more thay might have interactions?
@#1hoosierfan, how are you feeling with your treatments?

 

[China Expat]

Thank you all for the get well wishes. I'd say by Friday even I was feeling much better. I was even trusted to run errands by myself over the weekend! Come Sunday I started to get a headcold with congestion and a little cough. No fever or anything but that first sneeze was terrifying . Still feeling crumby today but on the mend. Got the call to schedule my first infusion- Feb 8th. I feel somewhat relieved knowing the next step is in motion and in a few months this part will in the past. The center sent me a bunch of medications through the mail, the anti nausea stuff and the lidocaine topical. The nurse today didn't tell me the bring it or use the lidocaine as prep but I remember reading that so I'll have to call back and check. She did say to start taking Claritin this weekend for the neulasta shot. Anyone have experience with neulasta injection?
I'll be having my fav foods the rest of this week and taking your tips to stay away from my favs while on therapy. Any other foods I should avoid not necessarily that I might end up disliking for years but more thay might have interactions?
@#1hoosierfan, how are you feeling with your treatments?

I hadthe neulasta shot; no side effects or issues. Avoid grapefruit. The claritin worked wonders!

 

[#1hoosierfan]

Thank you all for the get well wishes. I'd say by Friday even I was feeling much better. I was even trusted to run errands by myself over the weekend! Come Sunday I started to get a headcold with congestion and a little cough. No fever or anything but that first sneeze was terrifying . Still feeling crumby today but on the mend. Got the call to schedule my first infusion- Feb 8th. I feel somewhat relieved knowing the next step is in motion and in a few months this part will in the past. The center sent me a bunch of medications through the mail, the anti nausea stuff and the lidocaine topical. The nurse today didn't tell me the bring it or use the lidocaine as prep but I remember reading that so I'll have to call back and check. She did say to start taking Claritin this weekend for the neulasta shot. Anyone have experience with neulasta injection?
I'll be having my fav foods the rest of this week and taking your tips to stay away from my favs while on therapy. Any other foods I should avoid not necessarily that I might end up disliking for years but more thay might have interactions?
@#1hoosierfan, how are you feeling with your treatments?

I have finished 7 rounds of Taxol. I have done really really well with treatment. I am tired and achey days 3-5, but I have had no nausea, mouth sores, nail changes, or neuropathy that many people complain of. Hopefully it stays that way.

I will be thinking of you for a smooth treatment as they start.