August 2013 Chemo Sisters

Saltyjack: Welcome, so glad you joined us, sorry you had to though. This is a great group of women with a lot of very good advice, so voice whatever you want, we don't judge on here, you can cry, complain, scream, laugh, whatever you need to do at the time. We will be here for you.

My advice would be start drinking tons and tons of water starting today and continuing for at least 4 days, it helps flush the chemo from our kidneys and liver. Good luck tomorrow and let us know how you make out.

Love, Rayna

Hi Chemo Sisters!

I am doing better this week. My blood work turned around and I got another dose of chemo. yesterday with my steriod burst of energy this week again. Yay!

HVV-Hope your Birthday was great on the 27th! A good day, also a birthday shared with my husband and new daughter in law and her identical twin!

Shalimar630-BRCA, Yes, your right they don't call to let you know-you do have to track them down. For me it was a hold up with the insurance.

Naan1004/Julie-You are in the right place with your chemo sisters. Awesome hint-Chemochicks.com/awesome template eyebrow mask!

Batcatlady19-Great 1st chemo done!

Rayna-My port seems hard too. In fact, no blood return this week. They are talking about putting something like draino for ports in it next week. What this means I am not sure. I am glad you asked about surgery, it helps to hear what others have experienced. I also am going to do reconstruction, although I hope to use my own tissue. I still need to find out if I am BRCA positive or negative, it would give more information to make a decision. I also just found out last week that they think they can do an Oncotype on the tissue they removed from the core biopsy. Although I am not sure what this information will tell me. Did you have your cancer tumor sent for Oncotype?

Mankatostate-Welcome! The steroids wire me up too! Kathy, I understand I have four boys. They now range in age from 20-27. I remember those teenage boy years!

Sharonannebaker-Love you-Travel to get a shoe-Scratched my head-read your next post and then LOL. I have four sons too! Hang in there! Hope your feeling better!

hockeymommy-Good luck with your first infusion!

Lisasp-Also try AstroGlide, it works well! I also feel like a drugstore!

Sgyukon-Welcome-Hair, I just went from long to pixie and after three weeks to the Kiwi head.

lighthouselady-Your right we learn so much more from our chemo sisters! Keep letting us know how the cold caps work. I hate it too, but we will get through this with our chemo sisters together.

beeve-Nice about your house being featured in the local magazine. Yes, the steriods are good for getting things done.

wing48-The steroids have affected my appetite & my weight too! Need to go on a walk everyday.

Gashgold-Good luck with Kiwi Cut tomorrow. I think it helped my husband (and me) to transition from long to short to kiwi. Still have some hair-very fine and sparse after 6 cycles. I also don't think I will need a bikini wax! lol

Carolpr56-Let me know if they pay for your BRCA, it's incredible that the insurance refuses to pay for such an important test. I will appeal if they refuse.

Salty Jack-Welcome-I will be at MD Anderson the 3rd through the 5th. Stop by and say hello. I also am doing chemo before surgery. I also am doing it completely different, as I am on Taxol x12, then a cocktail of chemo. yet to be determined for 3 months, and then surgery and reconstruction to be determined where and when in the next 6 weeks. Going for 3 consults with three different reconstruction docs. If I am going to live with their work for the rest of my life, I want to feel right with my choice.

Praying that you all sleep well tonight, that you feel the love from your Chemo. sisters, and that you have a great day tomorrow!

Bellamomma: Glad to hear you were feeling better and got your bloodwork figured out.

I am gonna ask the onco on Weds and see if they tested for BRCA and did the Oncotype. The oncotype test gives you a number between 1 - 100 and the higher the number the greater the chance for reoccurence. I think if it around 30 they think it will reoccur. but don't quote me.

I hope you do better this time around with your chemo and SE's. Do you get the Neulasta shot?

Love, Rayna

Formygranddaughter, I went through the whole chemo, surgery, and radiation thing once and from my experience u don't want to ride it out.

I learned the hard way that if u don't pre-medicate yourself your body will let u know big time! I had the worst nausea, constipation, hemorrhoid, diarrhea, anxiety attacks with shortness if breath, I was in the ER with severe Neutropenia and ended up hospitalized for 3 days. U name it I went through it! It's not a matter to riding it out, it's a matter survival and finishing up treatment in a timely fashion. Being neutropenic delayed my chemo, surgery, and radiation by at least 2 months. I had to carry my huge breast tumor inside of me for an extra 2 months, maybe that's y I had a recurrence?

I hope I didn't offend u in any way, but for a person who already went through so much I hope u understand my frustration!



I'm playing it safe and pre-medicating myself because this time I am stage 4, have 2 young daughters I have to watch grow up and can't risk any delays in treatment! I have to win this fight for me and my girls!

Formygranddaughter, great words to live by, thanks!

Rayna: Here in my kiwi status I am happy to share what makes my head happy. I make sure to wash my head with CeraVe hydrating cleanser when I shower and moisturize every night with CeraVe moisturizing cream. In another topic (probably chemo tips for newbies), I noticed someone say they used this brand because their dermatologist recommended it to prevent cradle cap and folliculitis. Of course any good moisturizer is probably fine and lots of people wash their heads with baby shampoo. I got the CeraVe stuff at Target but it also available at Amazon.



FMG: Regarding SEs and products, this is my second round of TC. In my 1st round, I experienced dry mouth, bone aches, constipation, bad mouth tastes, heartburn, sore throat and dry eyes. I treated a lot of these things afterwards, some after a bit of struggle to control them though luckily most were mild.



I received my second tx Monday: today is day 5. I have been proactive in treating almost everything I got last time; no SEs yet except fatigue.



I use Biotene toothpaste and mouthwash several times daily, it helps with the bad taste and my dental hygeneist emphasized to stop using regular toothpaste because it has sodium laurel sulfate which dries tissues (it causes the bubbling).



My onco nurse said when I last came in that high dose steroids can cause heartburn and reflux which can get worse as tx continues and once it starts can be hard to get rid of. So for patients experiencing it they recommend Pepcid AC daily until tx is done.



My MOs practice is hypervigilent about SEs and prevention. She told me that as a result of the anti nausea drug regimen schedule, 9 of 10 people in her practice have mild to no nausea. She is fantastic, 27 years experience and only does bc. I do whatever she and her office tell me.



This of course is my opinion and what works for me. I spent many years as a journalist writing about pharmaceuticals for a trade pub and writing about cancer research so I am comfortable around drugs and side effect discussions.



Your mileage may vary.



Cutiecool and Bellamomma, glad to see you back. I think we can all agree on lots of hydration and hand sanitizer and trying to stay away from anyone who is obviously sick. Hope Carol is ok, she's probably out working up a storm!



Take care Sharonanne, it's day 5 for both of us hope you're feeling better.

Morning Raynaj!  While in the shower a few minutes ago I was thinking about my head so I'm glad you asked. 

I think we ought to love on our heads and the few hairs we have left. 

I make hair + scalp products so I am using my shampoo bars, natural conditioners, salves + butters.  I am only using these products because I have them on hand.  While I recommend washing, conditioning + moisturizing our scalps, I don't recommend spending lots of money on hair products right now because chemo is doing it's thing (unless you have a scalp condition like cradle cap, psoriasis, etc.).  I would try to use more of a "pure + natural" product that is free from preservatives, mineral oil, petroleum, phthalates, and other like ingredients.

I would use growth products after chemo to help our hairs come in beautifully, strong + healthy!

Someone posted on this site that you should use a pH balanced shampoo (maybe a baby shampoo).  For conditioning + moisturizing you can use virgin coconut cream oil, argan oil + a few others that are great for your scalp.  You may also want to gently massage your scalp, let it get air, some use a sunscreen (if your going out topless) and cover it at night when you sleep.

I hope this helps!

Make it a great day!

Salty, OMG I wrote u this long post and left to ck my calendar and it disappeared. Let's try again. Hello, my name is Julie although the ladies here call me naan, cause of my ID. I'm Korean American, can to US when I was 7 yrs old, so more American than Korean, but I read, speak, somewhat write and love Korean food.

Meaning of my ID naan1004, naan in Korean means, "I am", 1004 or sounded out, "Chun sa" means angel, so put it together and I'm an angel, or so I like to think of myself, heehee. Most Indian people or people familiar with Indian food think of the bread naan, but it's not.

The reason I'm posting is because I had similar treatment plan as you have now between 2011-2012. I'll do my best to try to guide you in your journey from my past notes and journals I kept. I was dx with triple negative Stage 2 right breast cancer, my tumor was pretty big over 3 cm and could be scene protruding with the naked eye above my right breast. I was 39 at the time so had a hard time getting a mammo. Anyways, that's a whole other story. They wanted to do the same as you to shrink the tumor so surgery would be easier.

They ordered ACx4 every 3 wks, then I had Taxolx4 broken down to 16 weekly I think it was. Started Tues before Thanksgiving 2011, first time I didn't spend it with family and was so sick from SE's. I finished chemo 5/22/12 never will forget that date ever! Had lumpectomy and node dissection on 6/8/12. Then on to radiation treatments Aug2012- Oct2012. Thought I was cured! Done!

Then in July 2012 had some highly stressful things happen in my life and my health started to go downhill again. I started having a cough for over 1 month and nothing was helping. Then I noticed lumps all over my body, left neck, left shoulder, and back of head. Within days I had a CT/PET/brain MRI and found out I now have stage 4 mets to brain, lung, appendix, bones, u name it it's there! Within a matter of days I started brain radiation and today will be day 8 I think. I will have 4 wks of brain radiation and just had my first chemo yesterday.

I hope I didn't freak u out with my post, but I want u to know there is someone out there just like u and they will help u by holding your hand through this process. If u want to ask me anything don't hesitate to ask or PM me whatever. I'll be here got u and my other sisters here! Hope u have an awesome Labor Day weekend and no SE's!

Formygranddaughter, that's great that your friend is going with u and supporting u, yay, friend! Give her a big hug and kiss from me!

Bella momma, wow u r good, replying to all the posts, I'm impressed. I could barely keep track of what I said 2 minutes ago, bravo!!!

Today's Declaration:  I decree + declare that God is working all things out for my good + His Glory!

What are you declaring + speaking over your life today?

Cutie, wish I was on here prior to u starting chemo, I would have suggested getting teeth cleaned prior to chemo, scaling helped me have little to no mouth issues throughout the chemo. Use the biotene mouthwash and toothpaste, soft toothbrush as often as possible and change your toothbrush often. Don't share toothpaste or cup for gargling, germs!

Lisa, hope you're feeling as well as I am this morning. We walked the two-block hill 4 times, then around town for a little time more. I felt fine. I feel about 95% normal this morning. God is good. Have a great day. Hope you're feeling well, too.

Good morning, ladies! Thanks so much for the kind words of welcome and support. So far this scary journey has been tolerable - but I can't imagine at all how it would be without knowing that God is in control and this is part of His perfect plan....and feeling the support and caring from all the great folks, including you.  Formygranddaughter, I love and appreciate all your thoughts about God. Through lots of the tests and procedures this week (PET, MRI, EKG and ultrasound), I just kept repeating some things I had memorized and they helped alot. Here's one:  I am here....by God's appointment....in His keeping....at His direction...and for His time. I've got lots more - and they're all written on papers I have taped on my fridge. I think by this time next year, my whole kitchen will be plastered! 

Doesn't life change quickly? I keep remembering that a month ago the thought of having breast cancer was the absolute most devastating idea I could think of. Yesterday I was so happy and thankful that I only have cancer in my breast and lymph nodes - and nowhere else in my body.

Rayna - thanks for the suggestions. I'd been reading all the posts about drinking lots of water and started doing that a couple of days ago - have a big glass of ice water right beside me and already mixed up the baking soda-and-water mix to rinse with.

Naan - thanks for the welcome and information. Interesting that you lived in Houston and didn't like it. My husband and I moved here from Pennsylvania 2 years ago anShd love it. Of course, we moved here for warm weather and found plenty of it so we're happy!

Sharon - keep up the prayers for us all and I'll be joining you. I know all the prayers are working - I can feel God's arms around me these days.

Bellamomma - another MDA! Are you going to the Medical Center (downtown)? I'm at the Woodlands - about 30 miles north of town, which is about 40 minutes west of me. Being able to go to the Woodlands center is perfect for me. I was so intimidated about driving downtown, parking, finding where to go, etc. Hopefully we'll cross paths one of these days anyway.

Okay, time to walk the dogs then head to chemo at 12:30. I'll be praying for y'all!

Sharon, well said, God gives us only what we can handle. I want to think of my current bump in the road as a present to my family to bind closer together at time of crisis and believe in him more and pray to him more than ever. I also want to think I am sick for my family, I don't think my elderly parents could survive this disease but I can so I am our family rep! I hope that God feels me being sick us enough and keeps my family healthy and happy til they meet their maker naturally. I truly feel soooo blessed to be among you beautiful, strong, funny, and brave women! We have entered this journey together and will exit it together as well! We can do this ladies! I beat it once, y not again, I'm a fighter and so are all of u! We have too much to live for and so many things to accomplish before we go! U with me ladies! Can I get a holler!