Starting Chemo in October 2015

AmyBeader

thanks Homeschool4us! The wig has about 10x the amount of hair I had normally, but I was really trying to go for the same style.

Sounds like a really rough and full day for you. I feel the same way about the infusions- the sooner we do em the sooner we'll we be done!

600 mg of Tylenol doesn't seem like enough- they told me I could take 2 Extra strength Tylenol every 8 hours which is 1000mg or 1 gram. Or I can take 400 mg of Advil every 8 hours. If your pain is still bad I would ask your nurse if you can up your dose. Hope this round is smoother for you

biscuits

Good morning all of you lovely ladies! Just putting a shout out to see if any of you have experienced any type of UTI like symptoms or have any blood in your urine after doing your first chemo treatment

Skittlegirl

The regiment my friend is on (AC) makes her pee red. But I think one of the drugs literally is red (aka red devil). All the drugs I get are clear so my urine color doesn't change.

AmyBeader

Biscuits- I found that I could stay better hydrated with cranberry juice and club soda, so I am hoping that helped keep the UTI away. I read they are common during chemo. Hope you get relief soon

Andraxo

Thanks! my buzz cut is about 2-3 mm or 1/16 of an inch - as short as she could take it with clippers. The little stubble is still falling out so likely I'll shave it down to true bald this weekend.

My eye glasses have always been like make-up for me....so I think they help me pull off the buzz/bald. Hoping they help too when my brows and lashes are gone. Might have to try a little make-up at age 45.

Brrrrr - gotta sleep in hats though and wear them more in general. Hard to stay warm without hair. It's really the back of the head/neck I notice the cold most.

Fingers crossed my second chemo happens Tuesday. Driving the 5 hours back to chemo city tonight.

Hives and breathing getting better - but still a bit itchy when the antihistamines wear off. Feeling great otherwise. Let myself have some extra sleep past 2 days (almost 8 hours, I usually only get about 6.5). ....bliss!!

happy Friday everyone - Hope you all have a fantastic day!

xo

twiggyOR

Fyi, many of the ladies in the September group used a lint roller on their head while their stubble was falling out.

DurhamGirl

Homeschool, I had PT a few days ago and the therapist said that I had some cording from the surgery. She did some work to break up the scar tissue. It was painful, like my skin was burning from the inside, but time limited (only when she was doing the work), and it helped SO much. Two days later, the cording is basically gone. I go back to PT next week and she may do some more. It's not pleasant but very worthwhile.

I hope you have a better day today!

MamaBexar

Andraox, I agree with all comments on how great you look with or with out hair. Also noticed your promotion. Congrats.

AmyBeader, You are looking great too.

I did week #4 taxol and Herceptin yesterday. Good news and bad news.(not really bad). I am tolerating the chemo so well, my Mo says I will now have 4 more than she had planed. She had thought I would be unable to take more than 8.

Andraxo

Wow MamaBexar! Can't believe you noticed the promotion Thank you! Just promoted this past July... a few weeks before my cancer diagnosis.

I have lymphatic cording after axillary node dissection as well as general soft tissue scarring from the mastectomies. I'm a PT and work on it a lot on my own, but I need another PT to do more because of the positions involved needing two free hands for soft tissue work. Very thankful a coworker works on me when another patient on her schedule no-shows and then I also just started formally seeing another PT who specializes in it in the city I get chemo when I am there. It is painful, but so worth it. For those getting PT - stick with it!! It makes a huge difference in the long run....especially if you are getting radiation or any reconstruction later. You must free up that tissue now/before additional treatment.

Just used a lint roller on my head TwiggyOR - super!!

- A xo

marylc

Hi All--

finished second infusion of TC last week. I'm finding second course easier than the first, maybe because I know what to expect.

Shaved my head before second infusion--love the stubble--it is so easy. Couldn't stand watching it fall out and the hair was getting like hay. I wear hats outside, have a wig I've worn once. But am surprised that I feel that the shaved head is sign that things are progressing and each day gets closer to the end of this.

I had some bad bone pain from the Neulasta with the first infusion--this time we cut the dose in half since my labs were fine and I did the Claritin every 24 hours for 5 days, starting the day before the Neulasta shot. It seemed to cut down on the bone pain. My infusion nurse recommended using Compazine for the nausea instead of the Zofran. Had much less headache this time around.

Hang in there all--

Kimmer33

ladies

I just want to encourage all of you today - this is a huge speed bump in our lives but we will get through it! Each of us sharing our personal experiences is so helpful to each other now and to those that will come after.

Homeschool, you are so strong - keep fighting! Andra and Amy you are so beautiful!

All the best to all of you with infusions today andnext week!

Kim

Freakedout4sure

I'm starting 4 rounds of TC next week. What did you start and how is it going?

DurhamGirl

Off to the barber to get my head buzzed. If I'm brave enough, I'll post pics later...

Petula

Hi Biscuits,

Love your hubbys nickname for you. My husbands nickname for me is 'Bug', short for Ladybug but Petula is my handle.

My first TC Chemo is next Tuesday. Have been running around like crazy trying to get everything I might need to help me through the treatment. Today's big adventure - I bought a wig😃

Please keep me posted on your progress and I'll do the same👍👍👍

My best to you and the other sisters out there. God Bless.

Petula

biscuits

Happy Friday Petula! Wow, that is a big step buying a wig. I fleetingly thought of it, but I think the little hats I found will suffice. The hair just started coming out this morning...small little bunches. It's been 10 days since first TC. Hubby cut 12" off my hair last weekend and this weekend it will be another 12". That should bring it up to my shoulders. We'll see how long that new "do" will last! I love your nickname "Bug". I hope you are blessed with a supportive hubby through this journey...it will make it easier for you. I will be eager to hear how things go for you next week. You will be in my thoughts, as will all of the ladies. Positive energy coming your way.

LivingThis

Wow! Thanks for all these helpful updates and sharing your experiences. I started the first of 4 cycles of dose-dense AC on October 23rd. Round 1 went so really well. Constipation from the Zofran and a bit of abdominal distress were my main issues. I also had intermittent chest "tightness" which feels either like asthma or indigestion (?? could it be bone marrow production in the breastbone?) I have a small mouth sore today (day 8) but it is responding well to baking soda paste at the first sign of trouble. I haven't lost any hair yet and am waiting for my wigs to arrive - I ordered them one week ago.

I also have cording in my axilla and will talk to my surgeon today about a PT referral so thank you Andraxo and DurhamGirl for sharing on that topic as well.

I am getting myself psyched up for round 2 this coming Thursday.

P.S. Regarding the blood in urine - that could be a side effect of the Cytoxan (if it is really blood and not just the red color from the adriamycin). I was told to notify my oncologist and infusion nurse if this occurred. Also to drink at least 8, 8-ounce glasses of water/fluid per day.

AmyBeader

I have axillary cording as well, but I have been able to break much of it down myself by stretching and massage. I have just a little bit left. Is there anything else I can do by myself, or do I need to see a PT?

Check with your insurance on the wigs (cranial prosthesis). My insurance covered mine! Although wearing it for a while right now makes my scalp hurt. I think because it is putting pressure on the short hairs that still remain.

I too am getting ready for my round 2 on Tuesday. Trying to make the most of this weekend. My kids have a masquerade party to attend tonight, so hubby and I have a date night at a nice seafood restaurant! His birthday is tomorrow.

Also, last year I signed up to chaperone my son's choir trip to Italy! (we leave November 19th) My MO said that i can go, and I even get an extra week after this round since it would fall on Thanksgiving week and we don't return until Thanksgiving day. I have just started looking at the detailed itinerary, and I am so scared I will not have the energy to keep up! (6am wake-up calls, touring all day-concerts, etc). My energy level is just not what it was, and I had just started trying to get back into exercise when I was diagnosed. Plus still battling plantar fasciitis in both feet. I have new orthotics being made-hopefully those will help. What a wreck I am, lol!

But, the thought of hearing my son and his choir sing at the evening mass at St Peter's brought me to tears this morning. I can't wait!

AmyBeader

LivingThis-I had tightness in my chest as well-thought it was allergies that were aggravated!

LivingThis

Happy Birthday Amy Beader! Your upcoming trip sounds wonderful! You will use your judgement to balance your activities with rest and save your energy for the events that are really the most important to you and will bring you energy. I was exhausted on day 4 (coming down off the steroids) but I gradually got the energy back. I even managed to do some short runs (I was a runner before all this started). I did not have to deal with plantar fasciitis though - that really makes walking challenging! My medical folks just keep telling me to listen to my body. Boy oh boy...I have never listened to my body so much in my whole life! Happy Halloween everyone!

biscuits

LivingThis: Thank you for the info concerning blood in urine. I am not on adriamycin and I have been super hydrating. I did a "dip" and it showed blood in the urine, but I also see it on the tissue when I wipe. I do have a history of kidney stones, so It might be related to the passing of a stone that I never realized (which has happened in the past). I see my MO on Tuesday, so I will mention it, but as you say, it may well be a SE from the Cytoxan

biscuits

AmyBeader: What a wonderful trip to give you something to look forward to. Hearing your son sing will be a cherished memory! Plantar fasciitis is aggravating, but custom made orthotics are going to make a world of difference (speaking from experience). Be sure to invest in a really good pair of shoes to wear after you get the orthotics

igay1ord

Biscuits...I had my first chemo treatment on Thursday, October 15th, and developed the UTI from hell that Sunday! I went through 2 bottles of cranberry juice and made it to my doctor appointment that next Wednesday. He asked me if it was common for me to have UTIs, which I told him no, that I hadn't had one in 35 years! He prescribed Keflex. Went back to him this past Monday, and told him the meds were kinda iffy. Some days I still hurt, some days I didn't. He said if I didn't clear up by this weekend, that he was going to recommend that I go to a urologist. Really? He's the one that created this mess, he should fix it!

igay1ord

After seeing some of the posts above, I'm guessing I should just go ahead and buzz my head! My hair is coming out slowly, but it's making my head hurt! It feels like I slept all wrong on my hair, almost like my scalp is sunburned. I saw a previous post about going to Great Clips. I did that 3 weeks ago. I went from hair past my shoulders to a Jamie Lee Curtis cut. When the stylist asked me why I was going so drastic, I told her I was going to lose it all anyway, so might as well go as short as I could stand it. She ended up not charging me for my haircut, but she got a heck of a tip from me!

To the ladies who shaved their heads....did you use a guard while cutting your hair? Thanks!

mustlovepoodles

10 hours ago AmyBeader wrote:

"Also, last year I signed up to chaperone my son's choir trip to Italy! (we leave November 19th) My MO said that i can go, and I even get an extra week after this round since it would fall on Thanksgiving week and we don't return until Thanksgiving day. I have just started looking at the detailed itinerary, and I am so scared I will not have the energy to keep up! (6am wake-up calls, touring all day-concerts, etc). My energy level is just not what it was, and I had just started trying to get back into exercise when I was diagnosed. Plus still battling plantar fasciitis in both feet. I have new orthotics being made-hopefully those will help. What a wreck I am, lol!

But, the thought of hearing my son and his choir sing at the evening mass at St Peter's brought me to tears this morning. I can't wait!"

I completely understand and I really hope you get to do this. I used to be the tour nurse for my daughter's children's' choir. The trips are so much fun, but sooooo exhausting. We took the kids to New Orleans one summer--city of cobble stones and 80% humidity. I had plantar fasciitis at the time, so I really do "feel your pain." Thought I really was going to die of pain and exhaustion a few times, and I wasn't even dealing with breast cancer at the time. But being able to hear my daughter sing in St. Louis Cathedral was worth every painful step.

I hope your orthotics come in soon enough for you to break them in. I don't know if you've ever worn them before, but they can take anywhere from a couple days to 3 weeks to get used to. Take plenty of foot first aid supplies with you, in case you get blisters or inflamed callouses. And bring some ziplock baggies so you can make ice packs in the evening (assuming that your hotel has an ice machine.)

Good luck! I hope y'all have a blast!

DurhamGirl

Hi everyone! I tried to post this on Friday, but I don't think it worked. Here's a pic of my buzz cut. I had them use a #2--I was a bit afraid of getting nicked, but it was fine. I've definitely never worn my hair this short, and I'm certainly not counting on it being around for very long. My youngest son (9) was a bit afraid to see it at first, but I think all the kids (I have three boys) are used to it. Hope everyone had a good weekend and Halloween.

biscuits

DurhamGirl...oh my gosh, you just look so darn cute! But with that big beautiful smile that you're wearing, how could you not be cheek-pinching cute? Have a fun Halloween night

Skittlegirl

I was told not to go lower than a 2 because it's good for there to be some hair to fall out.

On day 9 I did a short pixie cut. This was a good transition for my kids. I hated it. Day 14 was like postpartum shedding. Day 15 was crazy coming out so DH buzzed it with a #2 clippers. I still have stubbles at Day 10 after infusion #2. So not completely bald yet.

LivingThis

DurhamGirl - your cut looks great! I hope I can look half as good when I do mine! 

AmyBeader

great advice Mustlovepoodles! I do have custom orthotics but they are 5 years old and not the right support anymore. I had not thought about bringing ice packs, I will definitely add that to the packing list!

Great pic, DurhamGirl! I am loving the quick morning routine.

Igay1ord- my head is still hurting and tender, like a sunburn. I think it might be the follicles releasing.

The sticky tape lint roller is pretty effective if you can stand to do it with a tender head!

Kimmer33

lovely durhamgirl!

I had the pixie cut until day 5 of my second infusion, couldnt stand the pulling feeling with my scalp hurting and thought my hair was still too long so i went to stubble length and my hair follicles still hurt! Looking forward to the stubble coming out asap. Does a lint roller help with actually pulling the stubble out?