August 2013 Chemo Sisters
Comments
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Cougar, I will send you a message. IMO, as long as you feel good . . . go for it! Listen to your body; rest when you need to, otherwise enjoy your life.
Martie, SE are going to happen; however, decide that you are going to feel great (knowing there will be days when you feel not so great) + keep a positive outlook. I don't agree that you won't feel good for the next 18 weeks. Your doctor is part of your wellness team and wants you well; however, I personally would not accept him speaking 18 weeks of ill feeling over my life.
I spoke to my sister a day after my 1st treatment. I went over ALL the possible side effects, the pain I may experience, the mouth sores, fatigue, steel taste in my mouth, weight gain, losing sensation in my fingers and toes, etc.
She asked me how I felt at that moment and I said good! She said then go with what you're feeling now and STOP anticipating what you may feel later. She told me that I'm sitting like a lame duck waiting for the big chemo side effects to consume my body. She also told me that she did not want to hear about side effects that I was not experiencing.
Many of you may feel my sister was being harsh, but she was actually being very supportive in helping me not to let my thoughts create symptoms in my body, or thinking that I should feel a certain way. She reminded me that thoughts create words that create reality . . . you will have what you say! And as a man thinketh in his heart, so is he.
At that moment I stopped speaking about all the scary possibilities. I can't stop the thoughts from entering into my mind but I can cast them down by bringing them under the submission of the Word of God.
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Cougar, read the ingredients of the hair butter for any allergens @ http://www.shop.jlexi.co/Herbal-Scalp-Hair-Butter-with-KGF-HSHBKGF.htm. If you want me to send you a sample, send me a private message with your address.
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To all of you who are just starting/will be starting chemo soon, I just wanted to let you know that there is light at the end of the tunnel!! I did chemo from last Sept through Dec, and I will be finishing up my year of herceptin infusions in 2 weeks. Chemo isn't fun, but it is definately do-able!!
As for some of your questions, if you aren't getting neulasta or neupogen (2 meds to boost your white blood counts) you should definately avoid crowded places, especially during the nadir period (approx days 7-14 after chemo) when your white blood counts and platelets are at their lowest.
If you haven't already heard this, drink lots of fluids after chemo sessions, and for several days thereafter. It really does help minimize the side effects. Even if you aren't thirsty, try and drink. Diluted juices worked for me.
As for foods, my stomach tolerated eggs very well. I found they were easy to digest, and were a good source of protein.
For those doing taxotere, there is an icing regimen for your nails and toenails that I would highly recommend. Taxotere can sometimes cause nail damage/lifting, and icing your nails during the taxotere portion of the chemo works. Also, if you chew on ice during the taxotere portion, you get fewer mouth sores. You can check out different threads for different methodologies of icing, or PM me and I'll find mine and send it to you.
Good luck to all of you!
PS Formygrandaughter, where in NJ do you live? I'm in Paramus.
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We could do caps with stick-on "jewels." Our version of the decorated football helmet.
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That was a response to an earlier post. Just took an hour to read through the thread so I could get to "know" you all better since God in His providence has brought us together at this "unique" time in our lives. I, too, am a grandma ("Mimi") to four + 1 due in October (ages 4, two 2s, 1 month), and they are the joys of my life!!! So thankful that there is a place to ask questions, express fears, rejoice with one another, cry with one another, tell jokes
, and, most importantly, pray for one another! You have all touched my heart with your "stories," and I will continue to keep up with you and pray for you throughout this "journey."
My first infusion was 8/14. It was rough. -
Sherrym, I'm a psychiatric social worker, 31 years at the local state psych hospital, now at a nursing home. My MO and NP know where I work - and I reiterated to them that it's a SNF - but I won't get neulasta unless my counts are down. Meanwhile, I sanitize before and after in the shared bathrooms and hand wash like a surgeon!
Our little circle is growing, nice to have all of you for support! Nite! -
Hi! I just wanted to respond to your fear of ACT. I just finished AC and begin taxol tomorrow. I have to tell you, I was so scared. It really wasn't bad at all! I never once got sick from AC. The only side effect I had was mouth pain. Just stay on top of your anti nausea meds. I also just got home from a week vacation. Don't b scared to travel. Im hoping taxol will be the same! Good luck to you!
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Hi August Chemo Sisters!
I am with you traveling down the chemo path.
I am having chemo. first and then on to surgery. Currently I have had 4 of the 12 weekly Taxol treatments. I will be switching to the final chemo. in October, probably A/C every three weeks. I had a consult and they recommended a different combo. of drugs, so we will see.
I cut my shoulder length hair into a pixie, now it is baby fine and not much left. I am finding that I wear hats/caps with liners more than the wig I bought. I understand it's just hair, but really emotionally it's hard to look in the mirror. It makes me look sick. I did get a beige cap and tied a little colorful scarf around the outside which looks kinda of cute.
I am taking a Glutamine supplement twice a day, that's suppose to help with the neuropathy, so far so good.
Thanks for being there Chemo Sisters, it helps not to feel so alone traveling this path!
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FMG: Day 15 out of chemo and the hair is coming out in wisps. Blah.
Well off to school to help with back to school breakfast for teachers and to make make my PTSA VP speech. -
cgesq, I'm in Orange.
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Let's COMMAND our mornings. You command the morning by making a positive declaration. For example you can say something like:
I decree + declare _____________________
I decree + declare that God loves me + is watching over me!
I decree + declare that angels are watching over me,
A successful day is mine
I AM walking in divine health.
Let's command our morning! What declaration are you making over your life today?
Let's MAKE it a great day!
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I command this diarrhea to respond to the Imodium.
I command the jerk who busted in my car window last night and stole my purse to have coals of heaping fire upon his head. May he be busted for trying to fill my daughters' ADHD med scrips, which I will now have to pay extra money to replace.
May the car insurance adjuster feel I need a rental to get to my rad onc appointment this afternoon, as surely driving a car with no AC in 100 degree weather is an "undrivable" situation for a chemo patient.
May I not be put on interminable holds by all the entities from which I need replacement cards: the DMV, healthcare, Macy's and penneys, Costco and whoever else I might remember.
May I remember who else should be on that list.
I think I'm getting the hang of this, FMGDTR - thanks! ; ) -
Thank you Carol. That really does help. I will not start Chemo until Sept. 6 and I do get scared. I will remember what your
sister said when they creep in.
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? patti?
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Hi,
So I continued to move but also rested as needed. Feeling slightly nauseous today (day 5 post 2nd infusion of AC).
I'm in NYC/Westchester, NY. anyone else?
Was that an "esq." I noticed? Me too.
V
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Oh Carol. So sorry that some $&@":! broke into your car. Hope insurance gets you the rental w AC pronto. It's time for an upturn in your favor!
Hey and I'm a photographer too. I had intended to go back to school this fall to train to be a pro but that'll wait til I'm done with treatment. You live in the perfect area for photography! -
Thanks, Lisa! Making arrangements to replace stuff is taking my mind off the (new) desire to puke ; ). a Silver Lining? Lolol.
My husbands a pro shooter - it's a lot of work! Good for you, school can wait till you're all better.
How is everyone's Monday going? So far I have made an auto glass appointment (after the rad onc appt and conveniently located across from a starbux), and will now go in search of supporting documentation to prove my identity for my repacement drivers license. Who KNEW a divorce decree could be so useful??? ; ) -
HVV, I took one of my compazines...seems to be helping! Hope you've got something good as well.
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Hi carol, yep; i have one. I jusdt was trying not to take it. Sorry abotu yoru crappy day. Hang in there. V
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I COMMAND THAT THE TREATMENT REGIMEN THE MO GIVES ME TODAY IS JUST WHAT GOD WOULD HAVE ORDERED. It is almost time to head out to my MO for the news of when I start the chemo. I am expecting a lot of testing before they start, because they consider me ELDERLY, although I could probably run circles around those doctors, young whippersnappers that they are!!! God bless everyone on this thread today. I hope everyone has a great day. I got so much information from you today. That's great. I'm sorry I write so much. I'm a blabber mouth...well, I'm blabber fingers!
MyGranddaughter, How I needed your sister's words this morning. I have always believed that, but I have been doing the same thing you have been doing, worrying about SE when I haven't even begun my chemo yet!! I am going to remember your sister's encouragement and use it for myself. I would love her, I know I would. The words that come out of our mouth certainly do reflect what is in our hearts. From now on, if you see me worrying about something I haven't experienced, shush me. I love the command the morning idea. I will do that. You're so clever. That goes along with what Carol said.
CGESQ, I will be going today at 1:00 pm EST to my MO for him to line up my treatments. I will be taking taxotere and I am so so so glad I saw your post. Thank you for the heads up on the nails. How do you ice your nails? Will the NPs give you a bowl or ice or what? When I first read about icing, my mind went to cake icing. I had to go back and read it again. I haven't even had chemo yet, but it seems I have chemo brain. Ghee Whiz. I hate to think of what I'll do with chemo brain on top of my forgetfulness already. I will be 69 in November. I'll blame it on age.
MARTIE, I love your post. I'm glad you came. I am so new oo n here that I haven't even had chemo yet. I go today to my MO to get this ball rolling. I am probably the oldest here, but age is no discriminator for cancer. I'm glad to see another grandma here. I have twin great granddaughters, age 2. Joy can't express how I love them. I want to be here until they're old enough to remember me. It's amazing how we don't remember much in our first 4-5 years of life. I have a prayer list with everyone's name on it that is on this thread. I am adding yours today. I pray constantly. I love the Lord and he is at the wheel of this journey.What was the rough part of your first infusion? I start sometime this week for the first time. I'm anxious.
CAROL, I'm so sorry your purse was stolen. I had the same experience three years ago when a *&^&%$ young man stole my beach bag and went to the parking lot and pressed the trunk opener until he found the right car, where my purse and $200 were awaiting him. He got my camera, $327 computerized car key, my collection of megaladon shark's teeth, $40 out of my beach bag, and numerous other things I had in the car and bag. What a crock of *&^%$# for both of us. It certainly IS a pain to replace all of those cards. If I hadn't known the people in the office in my town, I would not have gotten my driver's license renewed. They won't do it over the phone, but my brother in law mailed it to us. Why do you think your counts haven't gone down? Is it because you eat right or what? I am hoping that the last two months of eating right pay off for me. I have lost 20 pounds and that is probably because I eat very little sugar and hardly any fat. I pigged out on that liver, though. I haven't allowed myself much red meat, so I almost ate it raw. I hope it helps my iron level.
ERICA, I will be starting chemo this week. Thanks for the reminder that we need to keep on top of the SE. I need reminding frequently.
BELLA, I love the name. One of the twins is Ella and we call her Ella Bella. You're new to me on this thread. It might be that you have been here and I am the new one, since I haven't been been here long. Welcome anyway.
LISA, Hope your speech goes well/ went well, whichever the case may be. Sorry your hair is falling out, but I'll join you in a couple of weeks, I'm sure.
It is almost time to head out to my MO for the news of when I start the chemo. I am expecting a lot of testing before they start, because they consider me ELDERLY, although I could probably run circles around those doctors, young whippersnappers that they are!!! God bless everyone on this thread today. I hope everyone has a great day. I got so much information from you today. That's great. SAB (sharonannebaker or Sherry)
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Good Morning Everyone:
Wishing those who start or are continuing chemo this week a good go at it.
I thought I would recommend a book for anyone who is interested, I read it during the beginning of DX and it was really good, its a book about 3 women who all face Breast Cancer and their personal journies and it was written by a man, very impressive. Amazon Kindle has it on their website.
"All You Could Ask For" by Mike Greenberg
Something to use as a distraction. Enjoy -
Well, today is the day the hairfalls out ... at work. Crap. Wearign a buff and have a summer hat handy. and lots of 1/2 inch hair fluttering all around.
Best,
V
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Hi everyone, hope everyone is doing well, Chemo flaired up my shingles( as I thought) it would😰and between that pain and the Neulasta bone pain I spent all day yesterday in the ER getting the pain under control and undergoing a few test. Traveling home today and I hope round #2will go smoother. Take care and hug's to all.
Shary🌞 -
Sharonannebaker: Good luck with your appointment this morning. Icing your hands and feet will help with Neuropathy later on. At my appointment they just folded an ice pack around my hands and feet the ice they gave me last appointment was just a hard block and not easy to wrap my hands in and that wasn't so good because my nail beds have turned pink now and are so sore I can't use my hands, I hope if I loss a few nails that the nail bed is dead underneath first.
69 is not old either, you are probably right you could outdo all those doctors and nurses because you sound like you have great determination.
You Go Girl!!!!!!
Love, Rayna -
Good Morning All! At least to my side of the world its morning. LOL
Gavinsgma, Thinking of you and hoping that you are more comfortable than you were. I guess it just isn't enough that you have to deal with the major issue, something else has to be thrown into the mix.
I can say the same to Carol also. So sorry you had to deal with people who would do these things. It just boggles the mind how a person can do that. I hope you are able to resolve things with the least amount of trouble (if possible).
I'm due to start my first infusion tomorrow. Woke up feeling pretty shaky. Feel like I'm hyperventilating a bit. Should I start drinking extra water today? Is that what is suggested?
Wishing everyone a peaceful day.
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Good Morning!!
Just wanted to say thanks to whoever recommended the mashed potatoes. Had them last night and they were great. Had a scrambled egg and toast this AM. That meal is still trying to make up it's mind whether it likes my stomach. I am on an eating frenzy.... Lol. Liquids are my best friend.
Go get my head shaved tomorrow after only 12 days from my first treatment. Hair was all over pillow this AM. As my oncologist said I could be a study all my own because nothing has been the norm for me with this T/C regimn. So please don't go by my post cause I am not normal. That just goes to show how different we all are. I want formygrandaughter's genes. I am going to embrace my bald head and think of it as one step closer to the end.
Raynaj I will definitely order the book. I have been looking at books and there are so many. So glad you recommended it.
Make it a great day!!! -
Gavinsgrandma: I am so sorry you are going thru all of this, Did they get your pain under control.
Shalimar: Yes start drinking water now and lots and lots of it. I drank 3 - 4 litres a day for the first 5 days, I think it helped. Good luck with the first chemo, if you are feeling anxious at all ask for an Ativan or something to help you relax, you don't have to have unneeded anxiety.
Carol: So sorry you had such bad luck with everything else we have to deal with, life and all its uncertainty still goes on all around us.
HVV: Not very good timing with your hair falling out now. I put a scarf on when it was falling out just to contain it until I could shave it off. Hope your SE have gotten better.
Love, Rayna -
Gavinsgrandma, add in my sympathy to Rayna's. I'm so sorry you ended up in the ER and I hope you feel better soon.
Carol your DH could give me pointers! Yeah school definitely is postponed till the roller coaster ride is over!
Rayna, thanks for the scarf tip I was wondering what to do between the falling out and the shaving time. Sigh. -
I was just coming to check on the scalp pain thing, wondering if it meant anything. My hair was long before, so I am so familiar with the 'it's been in a ponytail too long' pain, but since it's pretty short now, why? I'm both relieved and disappointed to learn it is a sign, relieved because I hate waiting and disappointed because I'm not that thrilled about baldness but am not doing the wig route (no reconstruction either, I'm a WYSIWYG girl).
It's been feeling sorer and sorer for about two and a half days, so when does the fallout happen? So far no shedding at all but I've already been working on hats (I sew and crochet). I don't know about shaving it when it starts falling or just observing the happening. I have a handheld vacuum I can carry around if it gets bad.
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ForMyGranddaughter. wow I love what your sister said. We live in a spiritual relm what ever we say satan takes and runs with it and uses it against us. He loves to hear we fear something or that we are nervous, anxious...but He who is in us is greater than he that is in the world. Making positive declarations and speaking His word are our instruments for war. Thank you so much for reminders that we are in a spiritual warfare for our health, our families, and we need to declare our healings and nothing will take us down.
Lisasp and Bellmomma: Im on day 21 and I still have my hair thin, but no bald spots. I too am loosing it by clumps now.(for the last 4-6 days I lost it in strands then bam) Especially after I wash it. Although loosing it like I have has helped prepare me for the big shaving day. Up to this point I cant bring myself to shave it.
It truelly is emotional. Im pretty sure I will shave it by the end of the week. 
I will get through it just a bump in the road.I have my 2nd chemo tomorrow. Looking forward to being half finished YEA!!!!
For those of you that will have their first chemo soon it really isnt horrible. Very very tolerable.
Everyone I pray for you all to have a day of feeling great!!!
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