Starting Chemo September 2015; join us!
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Hi All,
I want to pop in and share some encouragement. I was in the 2013 September Chemo group. After being diagnosed on August 15, 2013 with Stage IIIb, Inflammatory Breast Cancer (IBC), I started chemo (taxotere and carboplatin) and a targeted drug called "Herceptin" on September 5, 2013. Chemo was every three weeks for six rounds, then a double mastectomy, then 30 days of radiation and continuing the Herceptin every three weeks for a year. It was scary. Very scary. The only harder thing I had ever done in my life was on August 15, 2013 when I had to sit down and tell my kids that I had a Stage IIIb aggressive cancer. But we got through it! And you will too!!
If you want to know a little bit about how I handled my first chemo, check out my blog post that day (I hope you can laugh):
http://teamsimpsonblog.blogspot.com/2013/09/day-21...
I did not know, in August of 2013, whether I would live to see my son play his first game of college ball in the Spring of 2014. But I fought like heck to be there. And I was! I had to drive 200 miles to the first game of the season and I looked like heck, but I was there. Some did not think that I would live to see my daughter graduate from college in June of 2015. But... you guessed it... I fought like heck to be there and I was!!
For now, I am "NED" (No Evidence of Disease). I'm not sure how long I will stay NED. IBC can be very cruel. But, whether two more months, two more years, or two more decades, I'm going to make the most of every day! I recently accepted a promotion opportunity and moved from the West Coast to the East Coast. Life goes on and I'm just glad to be here to enjoy it!
If I could offer you three bits of advice...
1. Be Positive with Hope Always! Tomorrow is promised to no one, whether they are in perfect health or struggling with a devastating diagnosis. Be kind to all you meet on this detour, whether they are your family struggling with their own fears, your nurse trying to catch a vein for the second time, your doctor short on patience and long on patients, or even the jerk in the grocery store who calls you "sir"... you will have no regrets by taking the high road on the detour.
2. Live for the simple pleasures of LIFE! Every bonus day is a gift that many of our sisters on the detour did not get. A ball game. A graduation. A hug. There is joy in even the most difficult of journeys.
3. Pay it forward! Here in the forums, in the infusion room, with your newly diagnosed neighbor... others need the strength you will have as you get through this detour and live to share the tale.
God bless you all!
Regards,
Kathryn Simpson0 -
Rosieo, I am adding you to the list...and AnnieB43, looks like we will be starting just a day a part (unless there are further delays I will be starting on the 9th).
today was a particularly tough day at work, yes I am trying to get what I can off my desk early. Pretty wiped and will be heading to bed early. Hugs to all!
Octogirl0 -
Hi all. Wanted to check in about my port surgery yesterday. Although it feels weird to have the port in my chest I am glad I did it. Before surgery I had a anesthesia intern try to start my IV and blew a vein in the top of my hand. My hand swelled up and was really bleeding. I told her to find someone else to do my IV and that she wasn't going to try again. Then I had a nurse anesthetist try 2 times further up on the same hand and kept hitting a valve. Finally they had to ask my surgeon to use my lumpectomy/lymph node arm and the anesthesiologist started my IV in the OR.
Although it is pretty sore, it is manageable with pain meds. I am apprehensive about starting chemo tomorrow. It just doesn't seem real. I am a healthy 45 year old that had all the cancer removed, but need chemo to kill all the triple negative cancer cells. It just sucks that I can't take a pill to prevent reoccurrence, but glad that triple negative responds to chemo. Here's hoping for manageable SE's for all of us.
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Thanks for sharing shopgal2. My port surgery is Friday. I'm still trying to get a chemo start date. It feels like everyone I've been dealing is on vacation this week. Argh!!!
Praying for successful treatment and minimal, manageable side effects for all of us!
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Sigh. It is September. Shop gal, I feel the same way you do about how this doesn't seem real. I feel very unprepared and in high denial.
Best wishes for minimal SEs to all of my September sisters getting started this week! Let us know how it goes..
Octogirl
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Hey my September sisters check out breastcancerfreebies.com for cool stuff for breast cancer patients. Scroll to the bottom of the page to see the main menu and click on the links in purple.
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Hi everyone,
I too am creeping toward the beginning of treatment - getting nervous - I've also been having trouble getting last minute appointments done due to vacations. My MO wants me to meet with the cardiac oncologist who is out of the country on vacation and when she gets back in town she won't be at the hospital site near me for a few weeks. Frustrating.
I'm set to have my port put in on 9/15 and start chemo on 9/17.
I'm going wig shopping next weekend to get that squared away as well.
I've been combing through some of the chemo tip threads and making lists of things I might need to have on hand to help me get through side effects. I'm going to do a particular shopping trip to get it all.
Somehow getting organized a bit makes me feel better about what's about to happen. Probably a false sense of control over what's going to happen, but I'll take it.
I talked last night to a family member who also has HER2+ breast cancer and just finished chemo from a metastasis. She said she's feeling great and that the Herceptin/Perjeta has changed her life for the positive. I'm happy to hear that since I will have the same TCHP chemo.
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I think you are doing all the right things. Indeed having a plan, shopping, (but wait till the steroids- you'll be shopping on line in the middle of the night! At least I did until I realized what was going on and got a grip on myself) and being prepared are good strategies for facing the still somewhat unknown.
You are obviously very bright. You will bring your intelligence to bear on the problems you are facing.
Hugs and mojo going out to you.
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Hello, my name is Jenna and I'll be starting my chemo September 25th. 4 rounds A/C 4 rounds taxol. I've already had a bilateral MX with expanders. My cancer was stage 1, and is triple negative.
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I ordered a wig today and now I'm just depressed and really sinking fast. I don't think I've slept in a week and I'm not sure how to cope today. I've been good but buying that wig just pushed it all to the surface. It's like I don't feel sick at all but now everyone will see it. I'm just really sad and really angry.
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I got my port inserted today and it was not so bad. Better than a popped vein any day. It feels strange but makes me feel better about how the chemo will go.
I am wishy washy on the wig decision. I am pretty sure I won't wear it and don't want to look or shop for one right now when I have a hunk of pony tail to deal with. I think I might just do scarves but then I think that sometimes makes you look sicker than you are and people start acting weird. The decision is still out on that until I feel I can deal with it.
I have not really had any sadness but I have clinical depression anyway and have been on meds and stable for years. I am MAD at having cancer. Not that I would want someone else to have it instead of me but most of mine is anger. Does anyone else take the 1 in 8 to heart and feel like because you have it maybe 7 of your relatives/friends will get the no cancer diagnosis? It's the only way I can think good thoughts about it. Starting chemo on Thursday - good luck everyone.
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Wig shopping with my best friends today was a very positive experience. Choosing the hats, caps etc with girlfriends fuzzing over me made it all bearable. There was laughter with some outrageous looks. For anyone planning to do it..have fun with it. I'm having a pedicure and getting my haircut a bit shorter than normal tomorrow. I start chemo next week and also am stocking up on supplies to help with side effects. Being prepared gives me back some control..best I can do in this situation.
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Annie! Hugs to you. I'm really, really angry too. I'm trying to channel that into being as prepared as I can so I can kick cancer's ass. You can do this! We can do it together. I just keep telling myself that it's one sucky year....then I can look forward to many great years!
When your wig arrives take it to your hairdresser to fix up for you. It will make you feel better to see that you can look like yourself. My hairdresser to,d me he can cut it, color it and highlight it so it looks like I do now. Do it before your hair is gone.
I also just received advice to go to the MAC counter at the mall and get false eyelashes...they will teach you how to do them. It will make you feel better.
I just read a whole bunch of blog posts by Joan Lunden today and it really helped me see what chemo will be like and she has some really good advice based on her experience.
If you're struggling with feeling sad can you get them to prescribe an antidepressant to get you through this? My attitude is that if you can suffer just a little bit less then do it.
Hang in there. We are in this together
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JackBirdie! I want to let you know that I really appreciate your posts. You are so amazing. I admire your strength and positive attitude and aspire to be able to stay as positive as possible throughout this process.
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welcome, Jennagwyn, added you to the list.
If any of you who have your shopping lists done would be willing to share it would be much appreciated by those of us who aren't ready!
Hugs to all and thanks to Jackiebird and others from past months for wishing us well. It does help.
Octogirl
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I hope I start end of Sept cuz I"m loving this group! I will be attending the chemo class followed by the 1:1 nurse practitioner teach on 9/8. They give you a binder of info too. I plan on getting my port installed just before my 9/23 appt with my MO when we discuss the specific tx. She was talking AC-Taxol for me in July but that was when my tumor was 4 cm and not even micromets found in a node which is not the case post sx. I'm thinking unless the infusion room is booked up that I shouldn't have a problem getting in within a week after I see MO on 9/23.
So glad to see Jackbirdie in here! I take notes on everything you write. You and specialK have been so very helpful in getting me through to sx. I look forward to any more tips!
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I would love it if someone shared their shopping list with those of us who are less prepared.
I finally have a start date...... 9/11. The sooner I start the sooner I'll be done.
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shopping list such as it is. This is what's in my chemo bag...
A cable knit throw. My favorite one. Feels like a cozy sweater.
Squishy little pillow.
Water bottle for cold drink and a thermos for hot tea.
Hard candies.
Sick bags.
Audio books and music loaded on my phone.
Headphones.
Phone charger.
I'm taking my small laptop in case I want to watch Netflix.
Girly insulated lunch box. I'm starting a ketogenic diet so I'm carrying snacks and lunch with me.
Travel hand lotion.
Chapstick.
Hand sanitizer.
Little journal and a fun colored gel pen.
Deck of cards.
Here is what I bought that's just for home...
Artnaturals Lush eyelash/brow growth serum.
Trind perfect cuticle and nail kit.
A brand new white bath towel set that no one is allowed to use but me. I got white so I could bleach it. I'm storing it straight from the dryer in a plastic bag. It's coming on cold and flu season and I refuse to get sick.
New toothbrush.
Assorted soft hats.
Wig and all the crap that goes with it.
Extra pairs of slouchy socks.
Ginger ale.
New pajamas.
Hand soap that's antibacterial but also smells nice and isn't drying.
I hung a giant list of do's and don'ts for my house full of boys. It's all out war on germs here.
Hope this helps. I'm sure there is more and I'll add when I remember.
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Thank you annieb!
I'm ordering a photo collage fleece blanket from collage.com so I will be covered with love!
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Here's my start at a list. This is based off of reading the Chemo tips thread and I've also been reading the earlier month chemo start groups threads to see what's been working for them.
Need from pharmacy:
- -Biotene mouthwash
- -Immodium
- -Miralax
- -Claritin (for the Neulasta)
- -Sugar free hard candy
- -Prilosec
- -Soft toothbrushes
- -Liquid benedryl
- -Senokot S – take day before, day of and day after treatment
- -Fiber One
- -Notebook/pen to journal side effects
- -Aloe vera
- -Peppermint gum
- -Systane ultra for dry eyes
- -Tylenol
- -Good lotion
- -Hand sanitizer
- -Sensodyne toothpaste
- -Burts Bees lip stuff
- Coconut oil
Food to have on hand:
- -Stuff to make chili to freeze
- -Stouffers mac and cheese
- -Ritz crackers
- -Peanut butter
- -fruit
- -Prunes
- -Ginger snaps
- -Chicken noodle soup
- -Ensure
- -Pedialyte
- -Almonds
- -Kind bars
- -Ginger ale
- -Yogurt
- -Whole wheat spaghetti
- -Fiber one bars
- -Baking soda
- -Crystalized ginger candy
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Met with my supervising oncologist, whom I met briefly before surgery, for an hour this morning . Had an hour break (listening to music on my iPhone and lying down to rest my neck and back). Then met with my personal cancer nurse for over two hours, getting practical info, touring the new infusion unit (just opened yesterday), and lots of time just talking --- stress at home, my fears re:my "unfavorable" path results, my fears about treatment (like dying from an allergic reaction to the first dose, or from sepsis the first time my white blood cells bottom out --- go ahead and laugh, but that's what's been my nightmares lately...).
I've been corrected a zillion times: from "IF I survive this chemo..." to "WHEN you survivie this chemo..." by so many people at the cancer center, that maybe, maybe? I should start to think in those hopeful terms???
Therapy was scheduled for next Monday, but after looking at my surgical scar (which IS healing) and considering the slowly growing serooma, the oncologist wants to delay three days --- for a full three weeks post-op --- which is fine with me; I told her she has to make this type of decision because I certainly cannot!
Will definitely be losing all my hair. Cold cap NOT possible because of other health problems...
So grateful the Cancer Center scheduled so much time for me. Extremely difficult for me to "trust" any medical care, but I really have no choice now. Super big plus: my oncologists and my nurse are all women
---- and my Pain Clinic doc (a woman neurologist who's been helping me for years) can fit me in this Friday Scared but now less so....
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There is something very comforting about having women providers when it comes to treatment. I'm lucky to that my MO and RO are women so if I start whining they would understand.
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hi ladies- great preparation going on. Thought I'd add a few things:
Tea tree oil & Coconut oil- used both, especially the tea tree oil on my nail beds and under my nails. Some people in my group lost fingernails and toe nails. It's gross. They can turn black and lift. I used tea tree oil (on advice of MO nurse) several times a day then coconut oil. My nails ridged, got sensitive and got a weird brown color, but I didn't lose a single one.
The coconut oil became almost a joke in our group because we used it for everything, everywhere. Burns, rashes, sore bottoms...nuff said. I bought regular and a lavender- infused one, brand name "skin food" sold at Whole Foods and Amazon. I would put it on my head at night to moisturize my scalp and help me sleep.
But you must remember (I had to be reminded, duh) to wash your scalp even though there is no hair. The follicles need to be kept clean and clear.
Also in my chemo bag I put my address book (my phone-with a charger) some thank you notes and personal note cards. I received a lot if thoughtful gifts all through chemo, from flowers to food to books to garden ornaments. I knew if I didn't stay on top of them I'd never get them written. And I didn't want that to happen. I was often at the infusion center for 6-7 hours, between blood draw, waiting for results to see if my numbers were ok to proceed, saline, steroids, anti-emetics (Aloxi and Emend), then finally, chemo agents, one at a time. Some people get blood the day before, that did save some people time. But mine did it all the same day. A long day. So it is a good idea to pack things to do, read, write, etc.
Some days I really didn't feel like eating. I had no nausea or vomiting, for which I was very grateful. But it is extremely important to keep your protein intake up. I made smoothies with frozen berries. I used whey protein powder. If you are ER+, it is advised to NOT use soy protein powder. I found this to be a palatable meal substitute with clean protein when I really didn't feel like eating.
About the eyelashes. My MO (and several others') were against any growth stimulation type products, and even falsies during tx. It's hard, because you can fiddle with head coverings, wigs, hats, hair pieces like Polly's ponies (a kind of head band with a pony tail) but it's hard to hide the effects of list eyebrows and eyelashes. For me that was the worst. Also, they all don't fall out at the same time. Hair first, brows and lashes later. And you will probably lose underarm hair, leg hair ( one of the only side benefits- no shaving) even pubic hair. Just in case nobody told you.
It will still be hot weather where some of you are and might be too hot for wigs at first. You might want one scarf at least.
And one thing I did which was completely personal. I dreaded like you can't believe that moment in the shower when the hair starts to come out in clumps. And all the days of obsessive anxiety that would have led up to it. So the day after first chemo, my bestie went with me and I had it shaved. It was a relief. I never had to have that moment. And it's growing back nicely now, 2 months PFC ( medical gibberish for post-final-chemo).
So once again, sorry for the long post. I am following along, very proud if you all, and wishing you the very best. Special mojo going out yo you brave ones starting this week. You'll be ok. We often complain that the medical professionals treat us like an assembly line, but there is some good to be found in the capability that is born from repetition. Be well, ladies.
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A strong woman with a fully equipped purse can handle anything life throws!
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Thanks Jackbirdie! I look for your helpful posts and take note, so long posts are welcome for us newbies! xo
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CarolinaAmy & Admonkey good luck today with your first infusion. Positive thoughts are with you both and wishes for minimal SE's.
I went yesterday. I can now say that I have 3AC left and then 4T. I was nervous before then calm once I got to the infusion center I had a great nurse who will be with me for all my treatments I am calling my adriamycin my red bull instead of the red devil. I am naming the adriamycin and the cytoxin as my antibiotics to kill all my remaining triple negative cancer cells.
I went in yesterday with a good mood ready to channel my inner warrior chick. I even wore hot pink neon Nike running shoes which got loads of compliments from the staff, nurses & my doc. They are now my official kick cancer in the butt shoes.
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Go Shopgal! Love hearing about the shoes...ok, I am going to follow your lead and figure out a kick butt talisman! Next time you should post a pic of your shoes....(but only if you want to :-)).
Glad having the right nurse helped...let us know how you are doing and good luck on minimal SEs.
And yes, thinking of those starting today, hope it goes well. We will do this together!
Octogirl
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Okay, I have to go back and read the stuff I missed (I didn't get any notifications, ugh).
Just started with my first round of AC. Since my husband showed no interest in being here, my best friend came and was a total rock star as always. I had a whole slew of girlfriends ready to storm the place.Nothing terribly huge yet with the side effects other than feeling a little buzzy and exhausted. Anything I should expect tonight and the next few days?
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Hi CarolinaAmy I see you are TN like me. I had ice chips during my adriamycin infusion. During the cytoxin I was a bit cold (probably from the ice). I drank a 32oz Gatorade and a 20 oz iced tea during. That helped to flush out the red urine before I left the infusion center.
When I got home I ate a light meal and felt tired from the anxiety of a long day. I did need to take the anti nausea meds late night. And the steroids kept me wired. Sleep when you can. The nutritionist recommended that I drink 2-3 liters a day. I am lucky to get down 2 so far. Today is ok for SE's. Also I am rinsing my mouth with baking soda and salt water and using Biotene mouth rinse in the morning and nite to combat mouth sores. So far so good.
I have the neulesta body injector on which is set to dispense at 745pm. I did take Claritin the day of infusion, today, and tomorrow for bone pain. I had called my oncology nurse who said it is ok. Even my infusion center nurse recommended it.
And my short blonde brown bob is still intact- no stray hairs yet. But it looks sadly flat. It's like it knows it has less than a 2 week life span. But at least I have a cute wig ready to go after my head shave.
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Hi. How are you guys doing with telling friends and extended family about your BC?
I've told my immediate family and some close friends and that's it thus far. Another friend asked if she could tell other friends (so I wouldn't have to). I said ok, but really it annoyed me. It just feels like it's going to be gossipy talk since that group is very gossipy. I know my friend means well, but it still makes me uncomfortable. She also offered to tell two of my other close friends. I told her no, that I preferred to tell them myself.
I'm also struggling with everyone asking me what I need. Considering that life right now is pretty much the same as it was before diagnosis and I don't feel sick, I can't really say what I need or that I need anything really. I know that people are just trying to help, but I really don't know how to answer. I just say I'll let you know once I begin treatment.
Then on top of that I received a very well-meaning call from a woman who runs support services. I got the sad and slow "how are you feeling?" question and a litany of support groups listed off that I can join.
It all just seems way too premature. Like, talk to me in a few weeks maybe. Right now it's just frustrating me.
Anyway - I guess I'm just feeling kind of sad and whiney today.
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