Starting Chemo April 2020
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Hi Friends,
Erin, thanks for the links! I ordered some hats on Amazon last week and I’m looking for some more as I’m not really sure how I will handle the no hair thing! Not looking forward to that at all. Did anyone order a wig? If so, from where?
I get my port in Thursday and my next round of chemo is the following Monday. If anyone has any advice for me on the port feel free to share your experiences. I am worried about my low blood counts and surgery but apparently it’s safe.
I don’t know if anyone is on the same chemo regime as I am. I too am still working but I don’t seem to have lack of attention or fog. I do however have acid reflux (it’s new as of yesterday). I hate taking pills and was healthy prior to all this so it’s difficult to feel like you’re now not healthy.
On a good note - it was super sunny here and 15 degrees Celsius which I think is about 60 Fahrenheit. I went for a walk at lunch and again after work. The nice weather makes you feel better for sure. Now if this stupid covid would just end!
This is my and my fiancé at our Easter Dinner
Love to all
Bonnie
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PS don't mind the tape on Ceiling in background - haha! mark is going shack wacky and needs little projects to keep busy - he's painting.
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Hi Katie- I’m sorry you are going through all this again, but welcome to the group! You’ve already experienced a lot that some of us will face soon or have questions about. I added you to our Roll Call list at the top.
Hi Bonnie- Nice to meet you “in person”!
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Jess,
I was glad to hear from you - I was just thinking today that we had not heard from you in a while.
You have articulated the way I have felt about working, irregardless of the surgery I've had since January, all the tests, all the consults, all the all!
The last two weeks of work before I left on medical leave were very difficult. But then again, my work was very difficult ANYWAY without the additional factor of cancer! Some say that work can be a welcome distraction...however, given some of the specifics of my situation, that was not entirely the case.
Now I am both antsy and scared waiting for chemo to start. I had my port inserted about one and one-half weeks ago, had my "chemo training", etc. and now I wait. I think like everywhere else, hospitals and cancer centers have been struggling with scheduling a bit.
But all this waiting and sitting, especially in lockdown because of corona, is a bit unnerving. My energy is actually starting to return after my mastectomy in March and I would love to start "getting out there again." I had a lot of projects planned before the cancer diagnosis and I wonder if I will ever be able to get back to them the way I envisioned. On the other hand, maybe a re-envisioning will yield even happier results...
BostonGal....
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Hi Katie- I'm sorry you are going through all this again, but welcome to the group! You've already experienced a lot that some of us will face soon or have questions about. I added you to our Roll Call list at the top.
Hi Bonnie- Nice to meet you “in person"!
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Dear Kris,
Here is some information that can help you with your acid reflux.
https://chriskresser.com/how-to-cure-gerd-without-medication/
What helps me, is starting my day with warm lemon water, drinking lots of water during the day (not during meals), very low carb diet, eating low glycemic index fruits, lots of bone broth and veggie soups to keep my energy levels up. Not sure if you have green fennel seeds at home (most Indian stores will have them). I’m from India so have these handy! Chewing about 8-10 seeds of them whenever you get your symptoms really really works. And of the course the rest.. like being active.
Seems like we are on a similar regime. Weekly chemo for carbo/taxol and every third week perjeta and herceptin?
Do let me know how you come along with trying the above!
Good luck!
Zarin
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Dear Bonnie,
Just read your post! Somehow missed it earlier. The above post should help you with the acid reflux. About the port...I too was super nervous getting it. It’s been 10 days now. I’m getting more used to it. The bruising is almost gone. Have less tightness along the chest and the weighing down feeling is a lot less. You are of a slim build so you might experiment some tightness along the chest. More than pain it is all more of a discomfort. Keep up with doing deep breathing exercises, gentle shoulder squeezes, just laying flat on your mat/floor for 10-15 mins can help keep the front of the chest open.
Since I’m getting my treatment in the same hospital where I work. I’m thinking of starting a 15-20 breathing technique group before the start of the chemo sessions. Is there anything similar offered to any of you in the facilities you are going to? While we are in this lockdown stage, I would like to work on getting a program together and possibly even initiating a research clinical trial.
Look forward to hearing from you all!
Zarin
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Jess -
Glad you are feeling well in between! Having a good day is definitely a good thing. I am still working, but since it's all from home it's manageable. My boss is really great and giving me some slack where I need it. My newest thing yesterday and today is feeling weirdly STARVING and not wanting to eat all at the same time. I don't know if that makes any sense. I'm sleeping well, but also very fatigued in general. I'm hoping as I head towards the end of Week1, that will improve. I definitely have some brain fog, mostly from the fatigue I think. I just have to concentrate pretty solidly when I'm doing something.
Kris
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Hi Jess, and all,
Well...I'm officially part of the club now: chemo starts tomorrow. I am hoping I will feel reassured once I get through this first session. Until now, I was in denial - until I get that first chemo date, I can pretend it will never happen...
I enjoyed reading all the posts since last time I was on. I am glad to hear everyone is doing reasonably well - there are aches, some stomach upsets, port area tenderness, etc. - but it sounds like everyone is able to manage them AND live their lives at the same time.
Many good suggestions I've read. I did order some "chemo beanies" but from where, I don't remember! I've been doing SO much online ordering these days, it is a blur where and when everything is coming from!
I've managed to get my sewing machine working again and so may take a stab at creating some headwear and pockets for my current bras! I'm thinking about modifying my bras so that they will work with some sort of prosthesis and am looking forward to adding some "glam factor" to them!
Fond regards,
BostonGal - you can call me Allie!
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Stacey - you look great! Thank you for sharing! I start TOMORROW!
BostonGal (who is now Allie...)
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It's nice seeing everyone's pictures. Here's mine taken during my first infusion on April 3rd. Scalp is getting tingly now so I'll be buzzing it off very soon. I've been feeling like my normal self since last Friday (a week after infusion) but I did feel crappy for about three or four days after.
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Hi Everyone and welcome to all the new folks since I last posted.
I have good news to share. Finished Radiation to my lumbar spine on Friday 4/10/20. Had an echo on Monday to assess heart function after first “Herceptin“ treatment on 4/1/20. All good there.
Have confirmation of a new Medical Oncologist. Am so glad. I’ll see him on the 23rd.
Found out even more underhanded things the other Medical Oncologist had done, besides being incredibly rude to me and dismissive of my concerns which proved well founded.
He falsified my medical records after my allergic reaction saying he’d done the things I asked like extra saline, slower than normal infusion rate, benadryl, Pepcid, because of my concern for an allergic reaction — I was given zero premed and zero during infusion except what I brought with me.
When I was vomiting during infusion no zofran was given in the iv, I had to use the pills I’d brought with me because he couldn’t be found. I cleared with the chemo nurse before I took anything and every time I took another zofran. It took 16 mg of zofran to slow down the vomiting. I spent the next 12 hours with 102.5 fever, chills, shakes, and intermittent vomiting, and diarrhea. Two radiation treatments had to be postponed because of the allergic reaction.
I’m allergic to proteins in other animals and Herceptin is made from Chinese hamster ovary protein. Turned out I wasn’t even given the actual Herceptin but a bio similar which is made from mouse protein — Kanjinti. My consent form said Herceptin, not Kanjinti.
He Never Mentioned this as I stressed to him I had great concern specifically about mouse protein used in Rituxin and what horrific allergic reaction a friend (Who is allergic to nothing) had experienced. My allergic reactions can go as far as passing out and respiratory failure.
Oh — I also found out he’d gone to medical school at American University Of The Caribbean School Of Medicine. Ladies, please check your doctor’s credentials better than I did. This nut was referred to me by another doctor and I didn’t investigate his credentials myself. Also double check you’re actually getting what you’ve been told you were going to get
This is one happy woman I never have to see that man again.
j
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j....I am so sorry that all that happened, but so glad you have a new doctor!!
Erin
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It was so good to see people’s faces! Here is a pic of the items I ordered the other day. I am very happy with the quality. Erin
https://hatsscarvesandmore.com
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J - I am so sorry that happened to you. This process is scary enough without a doctor that won’t address your concerns and sounds very unethical! I am glad to hear that you found someone that will meet your needs.
Lise
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Hi --
Please add me to your list. I'm Molly and I started chemo today (4/15/20). I got the Taxol, Carboplatin, Herceptin bags. I'm fine now but it's too soon to figure out how they'll affect me. Also, I think I said I was 70 in the last post but I'm actually 71. I can't even blame chemo-brain. It's just "old brain".
And for Bon43 -- don't worry about the port. I got one put in Monday and it wasn't bad at all. The process itself was just going in and waiting to be called back. The surgeon locally numbs the area and inserts the port into the upper chest with leads into vessels. The only bad part was later on at home when the numbing wore off. You sort of want to curl down into a fetal position because you feel like you were kicked in the chest. By the next day I was just sore but that's all. And you'll love the port. I got chemo today and it was so much easier than having to chase down a vein. I did order a couple of "port shirts" from Amazon that had zippers at the top to easily access the port. That helped. A shirt that opens up in the front or that has a lower neck would work too.
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Sherri - So nice to see you in the pic!
Sherri talked about her scalp being tingly and knowing it's time. Well, I just had that this morning and my hair started falling out in small clumps today! No plans to shave it or anything yet... gonna try to play around with it first before I lose it completely... maybe see if it will hold up if I dye it pink??
Allie (new name for BostonGal!) and Kris - Thanks so much for the messages... it's nice to be missed! We really do share a lot of the same experiences and it's so comforting to read everyone's posts. Good luck, Allie, on your big day TOMORROW! We are thinking of you and we are with you!
By the way, I'm the opposite of Kris when it comes to food... I am hungry most of the time and my appetite is impressively strong! No worries about an under-nourished chemo patient here. Seriously, I'm the heaviest I've ever been, which would be depressing but it's kinda freeing to realize that this is one time in my life that it's actually truly ok to pig out (while I still can). No doubt I'll be shedding those pounds soon along with all my hair! haha / cry-cry
J - Oh I'm so sorry for your horrible experience with that doctor! I am so glad that you know your own health needs and body reactions so well, and that you're able to look out for yourself. A good reminder to all of us that we truly know ourselves best, even better than the medical experts we're working with, so if anything feels off or if they try to rush anything past us, it's our job to speak up and ask questions. I think Erin also wrote a great message to all of us earlier that was similar and really empowering.
Zarin - Thanks so much for all your tips and ideas about diet, exercise and well-being. It's super great to hear these things from one of us because it makes it feel more real than when I read it on a random website. I definitely need to incorporate more self-care things into my life. I had been planning to when I was first diagnosed, but was disheartened when the virus hit and all the cancer support groups closed, shutting down the free yoga and mindfulness classes I was looking forward to, and all the other cool things to help me step away from my routine life and rebuild new patterns and practices that will help my new future. You asked if any of our cancer centers have breathing technique classes-- are you kidding? Everything has been totally stopped because of the COVID-19 pandemic. Like everything! Even our self-image center (I don't remember what it was called but it's where you get fitted for a wig) is closed. Literally everything is closed. Ugh it's really frustrating. But all that complaining aside, what I meant to say was that I think your idea is really cool and I super wish I could do that with you!
Shout-out to Jana (JavaJana) because it's been a week since we last heard from you and your crazy long chemo day. Hope you are doing well!
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Hi Molly! You're on the list already but I'll add your start date. Congrats on starting! Hope your side effects are mild and that you feel ok.
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Allie -
Thinking of you this morning! I hope everything goes smoothly. Let us know how you're doing!
Kris
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thanks Molly, Zarin and Erin! I am sitting waiting for the port now. Here they put you to sleep to get the port - everything I read was just local anesthetic but Maybe because I’m in Canada. I don’t know. That is horrible what happened to you J, as if this whole process isn’t stressful enough! Erin you look great!
Bonnie
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Hi everyone. I love reading all of the updates to see how everyone is doing but dang it, I feel like I need a cheat sheet next to me to keep everyone straight! And I haven't even started chemo yet so I can't blame it on chemo brain! Good Lord, what will I be like after I start?!!!
So rather than use names, I'll just offer a few comments. Lol. I'm in central IL and only about 75 minutes from St. Louis, so if covid ever ends and a meet-up is planned...count me in!
I'm also a person who leans towards natural solutions to health problems (I think it was Erin who said that as well?) so chemo is like the opposite of all I believe in! And yet, here I go! I just had to adopt an attitude of, it's only 3 months, so suck it up and survive and worry about recovery after it's all over.
I appreciate the link about how to deal with hair. I had also planned to have it cut into a cute shorter before starting. My natural hair color was dark brown and I loved it so had never colored it until the gray started. Over the last several years I went gradually lighter to make the "skunk stripe" less obvious when it was getting close to time to color again and it is basically a darker blond now. So I was going to be a brunette one last time before it all fell out. Of course, that's not happening now. But it was good to have some direction in that article. My husband has been bald for years so we are going to match.
I also love the link about drawing in eyebrows. I have not been too upset about losing my hair (maybe the bald husband helps...lol) but having no eyebrows will just be weird! So I'm going to give that a try!
Chins up, everyone! We are in this together!
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Sorry for the second post in a row but the last one was getting long and I didn't want this to get lost in the shuffle. I start chemo on Monday, the 20th. So it's getting real now! And I'm TERRIFIED! I have a lot of plant sensitivities and seasonal allergies and then I read that Taxotere is derived from a plant. And I read about allergic reactions to it. And I read about people dying from an anaphylactic reaction and I'm just starting to freak out! Is there anyone else out there who has plant sensitivities and took Taxotere? Am I being unreasonably paranoid?
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pjb61 - you will be given a bag of Benadryl before the Taxotere infusion. You'll also be given steroids along with the treatment so that will help things. You'll also be monitored really closely. Chemo is scary but the way I wrap my head around it is welcoming it into my body. I try to avoid thinking of it as poison but rather as a nectar that's accepted with open arms for it to enter my body and do it's thing and then I flush out as quickly as I can by drinking lots of water when I get home and for the next couple of days. Good luck and please keep us posted how you're doing!
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Just stopping by since I came across this thread. Pics 1 and 2 were in 2017 during triple negative and AC/Taxol chemo. I went bald a lot in my day-to-day life, but scarves, too were my best friend. Start at the back nape of your neck with it in the middle, bring to the front (covering your cute, bald head), tie simple in the front, then twist each side and tuck in underneath near the back. It's easy, quick, and works with lots of different sizes and shapes of scarves. DO remember, it really does grow back and much more rapidly than I remembered previously. This is less than two years later. Ladies, YOU can do this!
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JLBinPDX, thank you for your words and advice. Your photos are beautiful. Welcome!
I am in my first round NOW...adriamycin and cytoxan! Wonderful center, nurses...I am so relieved.
Allie (formally BostonGal)
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Jess, what a fabulous photo! Fills the heart.
Allie
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JLBinPDX - your hair looks great. Thanks for stopping in and providing us with encouragement. I sure hope I get the nice curls again
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Hello all!
I am writing a general report on my first chemotherapy session.
Oh but first, I want to thank all for all your posts and sharing. My heart is full.
So...yes...yesterday I was terrified. And in fact, I said as someone else said in a post "this is real!" Until I had knowledge of a firm date, I was in denial. But then yesterday, when I got the confirmation that they would start today, I had to conquer my fear.
So let me tell you about my experience.
I am having Adriamycin and Cytoxan first. Later I will have Taxol. I worried about the Adriamycin but my NP told me that they've made the careful decision to administer it first based on the specifics of my situation.
On arrival to the chemotherapy center, I was taken aback at how welcoming all were and how nice the treatment areas are. I chose a seat next to a window with a very nice view. I was tempted to hide in a corner, but made myself take the window seat!
An assistant took all my vital signs and then my chemo nurse came to me and gave me a quick overview of the day in a very easy to understand way. I like that because it eliminated my usual response to stress which is to pepper people with questions.
Here was the procedure:
1. Clean off my port area and put the iv needle in: did not even feel this!
2. Give me some steroid pills and two separate anti-nausea drugs in my iv line.
3. Give me some fluids in my iv to hydrate me. I was relieved that I did not need to pee but the nurse told me it would be no problem getting to the bathroom if I did. She also encouraged me to drink as much as I want during hydration.
4. Push the Adriamycin into the iv line. These were two large syringes full of a very bright red liquid and again, I didn't feel a thing and the nurse and I had a great conversation while she pushed the drug. Only took about 10 minutes or so I think.
5. I believe she then flushed and hydrated me again.
6. Hook the IV to some Cytotoxan (in a bag). That took about one hour to get in.
7. Someone brought lunch to me!!!!!!! Had a nice sandwich, soup and brought the big chocolate cookie,chips and apple home to enjoy later.
8. GO HOME!
I feel tired from anticipation and lack of coffee right now but nothing else really. Had a tiny bit of coffee and the chocolate cookie and will read and nap. I am supposed to drink a lot of liquid to flush out the remnants of the drugs. Adriamycin can turn your pee cherry red for a while and I got that. Feeling very slight cramping in the belly but that's the kind of thing that I might get anyway without the chemo and so I'm not going to make a big deal about this.
The bigger thing to relate is that I was overwhelmed with gratitude and a sense of peace while at the center. Ya'. I have cancer; but...I am SO grateful to have such good, kind, and skillful care!
My best to all!
Allie (aka BostonGal originally)
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pjb61 - I'm with you on the eyebrows, I'm more upset about losing them than my hair and I'm not great with makeup, so I'm worried they will strange drawn on. I found something online (I'll try to find the link if you would like), they make “eyebrow wigs". They are basically eyebrows you can glue on with eyelash glue. They are supposed to last for several months if you take care of them. I was considering getting a pair for when I am out and about.
I go in for my second taxol tomorrow morning. Speaking of, is anyone doing taxol before AC? It looks like most start with the AC. It's been a pretty good week with minimal side effects so I'm hoping this round will be similar.
I wanted to share a picture with you all but for some reason it won’t post
Take care!
Lise
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Yay, Allie (BostonGal) on your great first day of chemo! I'm so happy for you that you like the people at the center. To me, it's definitely the people/staff that are more important than even the chemo itself. I love my nurses and totally trust them, so that I'm not even scared about having a bad reaction or any other issue... I just totally know that they will take care of me well, that they've seen it all before, and that they will listen to me and explain things to me.
pjb61: That bit there was actually for you, too! I know you're scared about the big day tomorrow, but you can totally do this. True, you might not really know how you/your body will react, but I'm sure you're in good hands. And you know the basics of how the day will go based on Allie's great walk-through that she wrote above. And I love what Sherri (Sugar77) said, too, about welcoming the chemo into your body- very encouraging. And you know we're all going through it with you and we'll be here for you!! #aparttogether (or whatever those hashtags are that celebrities are using on social media)
My tip: Drink plenty of water/fluids today, too, if you can so that you go in tomorrow well-hydrated. Many people say this has helped them to minimize side effects and I believe it has helped me. And if your nurse is allowed to, ask if you can have the rest of the saline after your treatment is done to help hydrate you. I know you've already heard to drink a lot of fluids on chemo day and the day after: just remember that the chemo drugs are not required to hang out a while in your body to do the work, nor do they work better or stronger if they stay in you longer. Nor do we have to worry about diluting the drugs by drinking so much. They work instantly with their mere presence, so it's totally fine to flush them out as quickly as possible! You can Marie Kondo them with every sip-- thank them for their service and then tell them to get the heck out! lol
JLBinPDX: Thanks so much for your hair inspiration! ....hair-spiration?! haha
And to everyone talking about eyebrows (Sherri, Lise, etc.)... yes, I'm totally with all of you! DUDE, I'm gonna look crazy without eyebrows! I'm definitely more concerned about that than I am about my regular hair. I really hope that my eyebrows hang on and only thin a little, and that I can work some makeup magic (keep in mind that I don't even wear makeup on a regular basis so I also have to learn how to do this so-called magic). But hey, what can I do but wait and see what happens? Cancer has taught me patience and going with the flow. Can't predict what's gonna happen and can't diagnose myself (no matter what I try to figure out on the internet, haha). Nowadays, I don't know what kind of day it'll be when I wake up... just gotta wake up and see!
Today is Thursday and I'm home now from Chemo Day #3, yay! (I'm on weekly infusions of Taxol.) I did sleep hard for a couple hours once I had the Benadryl in. Love drug-induced naps, to be honest. It's like a relaxing time warp. But this time, unlike the previous two sessions, I felt super woozy/groggy afterwards. Still feeling off even after eating a light dinner and walking around doing laundry/cleaning/whatevs for 90-min, so now I'm giving up on my day and laying down in bed. It's only 7pm!
Love all of you!
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