Starting Chemo July 2012

natL12

Lifeonitsside..and stride.  I'm with you on the exercising.  And my hat's off to those who still can.  I was able to do step aerobics through the first 2 chemos (after the first icky week), but, after the 3rd, I found that I was too shaky to do that, so I just walked the treadmill. And now even that's too much for me.  Ironic..I walked a half-marathon at 4 mph just 10 days before my diagnosis!

HOWEVER, I struggled my way back to fitness four years ago, after 2 open heart surgeries to repair leaky valves (it took me nine months of hard work to do it), so I'm assuming I can struggle back again.  With a big IF....and that is. IF I don't get neuropathy!

teeballmom

Hi everyone.



Well, 4 taxol/herceptin done. Only 8 more to go and then rads and herceptin for a year. Taxol has been very doable and now they reduced my Benadryl from 500 mg to 250 mg. I can actually function and speak clearly with the nurses without my brain taking a vacation.



I think I have been lucky with side effects but I take a lot of supplements. And my iron levels went up 2 points. I am still below the lowest normal by 2 points but next week we will see. Starting yesterday my iron protocol from the ONC is to take 2 iron pills.



Hoping everyone is doing well.



Take care.

stride

Thanks Life, Susan and NatL, it helps to know other people are experiencing the same thing. 

NatL, Neuropathy is really variable. I know it's terrible for some people, but I think it's a small number. I have a mild case of it in my hands. If it turns out to be permanent at this level, it wouldn't be a problem. Open-heart surgeries, now that's a big deal! Recovering from that must have been a real challenge.

Soltantio, what supplements do you use? I am taking B-complex and magnesium for the neuropathy, as recommended by my oncology nurse. I am also taking fish oil and sprinking ground flaxseed into my food, just for kicks. I eat good Greek yogurt daily, or nearly daily, so I get some probiotics through that. I also use protein powder in the hope that will help rebuild muscle. I have read that Vitamin C may inhibit the effectiveness of Adriamycin, which works by creating free radicals, but it can also limit the risk of heart damage. I have been taking an occasional multivitamin, but not megadoses, to kind of hedge my bets.

roadwarrior28

Stride - I take vitamin B6 and B12, and fish oil. So far so good as far as neuropathy goes.

emilybrooke

This week is my "week off" from chemo and I have been keeping busy with a bunch of different things. Thank you you noticing my absence Susan fortunately I am okay!

I am working on the t-shirt orders for my friends and family the upcoming Making Strides walk at a beach near our house on 10/21. I'm also working on a pie/cheesecake fundraiser for Thanksgiving that the senior class at my high school runs each year. This year I am the grade co-advisor and I feel bad that I am out on leave missing so many events this fall. I've been going to physical therapy and also trying to up the ante on my exercise routine. I have been trying to walk every single day and have only missed three days since last Monday's treatment. But I also need to start incorporating some lower body training - like squats and lunges - because my legs are definitely feeling a little jiggly.

Soltantio you are so right about eating right for our long term prognosis. It was hard to eat the right things during the AC treatments but I am trying to find my way back to fruits and vegetables now that I am on Taxol. I plan to ask my onc about what I can/cannot take. Thanks for the reminder!

_Ann_

Hi ladies.  A question about Taxol (which I start next week).  Can you stand to drink plain water when you're on it?  I'm so eager to be able to drink something other than sweet beverages.  I used to get light-headed if I went 3 hours without food.  That problem cleared up when I quit eating & drinking sugar.  Now I'm drinking sugary liquid all day and that problem is back.

I'm also noticing my fingers are swollen.  Rings that used to fall off are tight.  Not sure if that's direct SE, but I wonder if it's just too much Gatorade leaving me puffy with fluid.  I go through 2 bottles a day lately.

I'm so wanting to get back to some semblance of normal! 

mssunshine71

I just finished my 4 rounds of AC ( a week ago today), had my second MUGA scan and will be starting Taxol/Herceptin in two weeks.  The nurses told me there would be NO nausea and my hair would start to grow back.  Has anyone else been told this?  I noticed some are still experiencing nausea (although maybe not a strong as on AC)

roadwarrior28

Mssunshine - I started Taxol 2 weeks ago and have my 2nd treatment tomorrow. They are right - no nausea (and I didn't get any anti-nausea pre-meds like I did with AC) and my hair is in fact growing back slowly...

mamabr

My eating habits and taste haven't changed with Taxol. Over the summer I was drinking at least 2 liters a day, I'm probably down to 1/2 liter now. Water is hard to get down and the only thing I have found to help is mixing it with cranberry juice. Sometimes I have tried some ginger ale, because it sounds good, but the carbonation just kills me. I have a really hard time getting miralax down, even though it is mild. But when I forgo my regimen, I suffer the consequences. 

mamabr

ya, it's weird how we can all stand different things. I used to enjoy a soda every day, but now if I try one it tastes like pop rocks in my mouth. 

SusanHG123

Had my 2nd Taxol/Herceptin today with steroids, Benadryl, Pepcid, nausea meds. Am still having-what MO thinks is residual side-effects from AC. Lots of skin peeling, rash, blisters. Side-effects of TH-minimal nausea-yeah!. Pain-yes. MO hopes will decrease with this dose. If not will add oral meds for breakthrough. Some really intense pain. I am uneasy about the weekly TH and no down time. Last week i went from 3 days of steroid high to 3 days of pain to labs to chemo. UGH! 

Water--yes. Drinking plain water. Actually tastes good. Today thought a milk shake from Sonic would be good. Drank some of plain vanilla. Chemo brain blocked my life long IBS--so really had belly pain and paid for the lactose.  

The nurses (and according to my readings) said not to anticipate hair until after Taxol is finished. About week 6-7 may have some nail color changes but rare for a nail to actually fall off completely in their clinic.  

There was mention of working. I am still working every day. I have an almost perfect position as Dean of Health. My building is filled with health programs, clinics, labs, classes, students, etc. There are clinical beds, EMS gurneys, OT lab beds, and more. If i need a nap over lunch i grab one of my quilts and a pillow and take a nap. Have 2 therapy dogs in the building most days and can have 1 in my office for pet therapy if needed. I am rearranging my chemo from Thursday to Wednesday so I do not have to miss so many meetings--but otherwise have been treated beautifully by my administration. And that was my idea. I am available by cell phone, text, Go To Meeting, and can Skype if necessary. I still teach 1 nursing class and have arranged as hybrid so if I cannot be in class can do an on-line lecture through Blackboard. Or, if someone in the class has a viral infection-I can lecture from another room and IT can set up to show in the regular class. I know I am blessed and am grateful everyday for my position and my insurance. 

Emily--glad you are busy with fun things--not consumed with the other. Maybe we need a check in page.... Hugs to all 

Madelyn

4 Taxols down...8 to go.  I am so thrilled to be feeling this good.  The only downside is the steroid marathon that keeps me up all night after the treatment.  Nails are good.  No neuropathy.  I am not taking any supplements-not for any reason just haven't needed them.  I was very low on iron when I started chemo, so my onc had me do a 5 hour Iron IV.  I was told it was a one time thing and should sustain my iron level throughout chemo.  When I started I got a B12 shot every week, now I'm getting them once a month.  

I wonder if the reason that I feel so much better on Taxol is because my diet has improved.  AC really throws you for a loop in some many ways especially with food.  I was craving pure junk, but I just caved in and got through it.  Now on Taxol, I can take control of what I want to eat.  Plus I have the energy to plan meals better.   I'm also able to drink water again.  Daily short walks feel great.  

The eyebrows/lashes are thinning out...but its all good.  

Hope everyone continues to be well! 

PinkyWI

First Taxol treatment yesterday -- got Benadryl, Pepcid and anti-nausea meds.  Tool a lot less time than AC, which was expected.  Closed my eyes but never did fall asleep -- was close though -- you know how just before you fall asleep, all the noises around you seem louder -- that is what I experienced.  Got home about 5pm, in the recliner by 5:30 pm and fell sound asleep until 8:30pm. Unfortunately, I was hungry then and ate after 9pm -- luckily I did not experience acid reflux.  Then, was up until 2am -- wide awake.  Today though, I am feeling pretty good, knock on wood!  Strange feeling in my nails last night though -- the nails themselves hurt, nothing unbearable or to even complain about, just a strange feeling to have.  That is gone now so I am expecting that to increase with each treatment.  One down eleven to go!

Wishing everyone minimal SE or better yet no side effects!

mssunshine71

Road warrior and others - thank you.  Although there are side effects it sounds very encouraging.  I don't think I could possibly handle one more AC-like round!  

Anyone else on Herceptin doing 18 rounds?  I start every three weeks.  First 4 are with the Taxol 

_Ann_

Madelyn thanks for that report.  I was wondering about drinking water on Taxol.  I'm so looking forward to being able to eat & drink non-junk food.  I start Taxol next Thursday.

Lifeonitsside

Funny how much better I feel now that my boyfriend is home from Europe! We don't talk a lot about my treatment unless I really want to. Mostly very pragmatic about it, the logistics, what do I need to do. But him being gone for a week and not really seeing him much before he went cuz he had his kids really wore on me. But seeing him last night and just being with him lifted my mood so very much! He gives me so much comfort just in his very presence.

emilybrooke

mssunshine - I am on the same 4 rounds Taxol with Herceptin then Herceptin every three weeks for one year. I am also getting Herceptin on the week that I do not get the Taxol. So I will have 8 herceptin by the time the Taxol ends at the beginning of November.

Madelyn - I agree about being more in control of my diet these last two weeks. During AC I was a bagel maniac for 5 days and then the week between treatments I tried to eat as many vegetables/fruits and grilled chicken as I could stand. I am finally beginning to crave vegetables again and plan to make white bean & kale soup this weekend before my next round of Taxol

Life so glad to hear that your sweetie is back home with you and lifting your spirits!

I am scheduled to see the radiation oncologist on Tuesday afternoon. I am already having anxiety about this appointment. Sorry, about to vent a little - when I was diagnosed in May the surgeon was leaning towards a lumpectomy. I said NO I wanted the double bmx to make sure it was all gone. After surgery she hit me with the chemo news, then two weeks later the HER2/herceptin news. I just hope that maybe I can catch a little bit a of break on this one and not need the radiation. But in the pit of my stomache I feel like they will want me to have it because I am young and they want to take every precaution possible - okay vent over thank you for listening to me.

Hugs to all and a good weekend too!

_Ann_

emilybrooke, I hope you can avoid the radiation.  I thought they only did it in case of lumpectomy or node-positive.  I've barely learned about it yet though since it's way down there beyond chemo and surgery for me.

Life, so glad your BF is with you again.  I had the hubby home with me this week and it was so much nicer than being home alone most days. 

Well I'm making an effort to kick the sugar habit again.  I only had a small amount of cranberry cocktail mixed with sparkling water, and no cookies or ice cream all day.  My fingers are still a bit swollen but less so since I stopped drinking Gatorade.  Wish I knew what causes the finger swelling.  Oddly enough it's worse on the cancer side, but I haven't had surgery yet so WTH? 

stride

Things that make you go hmmm.... I have been doing neoadjuvant chemo. Five rounds down, one more to go, and then I'll be ready for surgery. My tumor has been stuck at 2.5cm since my second round. Since I didn't get a complete response to the TAC, my oncologist has suggested I consider a chemo clinical trial that I would do at the same time as radiation. It's just a suggestion, she's not pressuring me in any way. I can't believe I'm even considering it. I mean, I was seriously excited about getting my port taken out, and now I'm considering keeping it in? I must be out of my mind.

Itsalltemporary

Hi PAealgesfan - how is your radiology treatment going? I have one more round of chemo then will start radiation as well, so I am interested to hear how you are doing. Hopefully it is easier than the chemo and side effects are minimal. Wish you the best!

SusanHG123

Think we need to get our MOs and ROs in a room and see if we can get similar info. I was told would have chemo, surgery, radiation, then MAYBE candidate for reconstruction, then oral chemo. Have reached the point (after 2.5 short/long months) I just show up. Chemo plans has changed--but knew it would after patho results. Surgical plans being discussed--lumpectomy followed by mastectomy versus mastectomy---and more.

I just show up.

Able to drink diluted juice today. Off water again. Go figure.

Still hot is New Mexico. So anxious for cooler weather 

cyano

Stride - I think being able to maintain physical capacity during chemo really depends on how your individual body reacts to the chemo. 

I was in very good physical shape before surgery/starting chemo. I was running about a 7:40 minute mile and up to an hour 3-4 times a week. I was hiking up to 20 miles on Saturdays and I was rock climbing at an advanced level. I had considerable muscle pain during chemo that seemed to be due to the taxotere. Shortness of breath is also a big problem. I'm pretty sure that my quads are now some flavor of jello.

My oncologist is unconcerned and said that these are common side effects. I finished chemo almost 4 weeks ago and things are slowly getting better. I walked 3/4 of a mile tonight on a flat route and wasn't wheezing. I ran 1/4 mile at 12 minute pace. last Wed. It's frustrating having lost hard-won fitness, but I'm hopeful that it will come back over time. I also wonder how much of the SOB and fatigue is due to anemia.

PaEaglesFan

Itsalltemporary, I've only had 2 rad treatments so far and the first one took about 45 min because they check everything before the actual procedure. Once they start, it's over in a minute or two. I see from your profile that we are only days apart on our paths. It's been a long summer, hasn't it?

natL12

Cyano...It's good to hear from someone else the frustration of losing hard-won fitness.  i have trouble understanding how quickly I've gone downhill. I've had 4 weeks to recover from the last chemo, so this should be a "good week".  I got out of breath walking slowly from our car to breakfast this morning.

PAEaglesFan...yes, it's been a VERY long summer. I'm sure you try, as we all do, to appreciate each day we have on this good earth, but I'm wishing Oct. 30 was here.   That will be my last chemo...I hope.  I know that's not the way to appreciate this beautiful day we have today.

Positive note...I get to see my son today. He was in Indy to do some recording and play a job this weekend, and will have lunch with us before he flies back to NJ.  I'll pretend I feel better than I do.  Women have an advantage in this way....we can put on some color on our faces and folks can get fooled. 

Good wished to you all.

_Ann_

Hi NatL12, I'll bet it's frustrating to still feel down at 4 weeks out.  I'm 2 1/2 weeks from my last AC, had several really good days, then yesterday was spent mostly sleeping, and slept well all night too.  It was like I was back to day 4 or something!  Kind of discouraging.   I hope lunch with your son is fun and gives you an energy boost.

mamabr

You are so right NatL12, a little makeup and smile and most of the people don't even know that you would rather be crawling back into bed. Of course, while visiting with your son you'll probably forget you don't have energy. I find when my kids are spending time with me, it makes me feel better. My son was so cute the other day, I shouldn't say cute, he's almost 20, but he was playing golf and he swung by to pick me up so that I could ride along in the golf cart. It really did feel good to be outside and it warmed my heart that he inisisted I join him. 

 Ann, don't you start Taxol this week? How many weeks of Taxol do you have?  

_Ann_

Hi mamabr, thanks for remembering :-)  Yes I start on Thursday, it's once a week for 12 weeks, finishing up Dec. 20.  Being done with chemo will be my Chistmas present.  I have an MRI this week as well, my MO wanted to see the result of the AC.

brkaren4

hello, new to site. halfway thru chemo-been reading through your chats.

roadwarrior28

Hi all. So far Taxol #2 is a bit of a terror. Day 2 my face was red, itchy and swollen. Day 3 my left eye puffed up, looked like I had pink eye - it resolved in hours. It's day 3 now and my whole body aches, the knees are especially bad.

SusanHG123

Ann-will be anxious to hear the results of your MRI. I have my 3rd a month from today.

Roadwarrior-feel the same about Taxol. Have not recovered from #2 and have # 3 Wednesday. Am moving my days from Thursdays to Wednesdays. Pain--especially back, ribs, and legs has been rough. Can't take pain meds and work--too much nausea and too sleepy. Going to meet with MO Wednesday for usual appointment and try to find an alternate to what I am using now. Weekly sure does not give any down time from steroids and SEs. Am guessing the SEs are all from Taxol and not Herceptin. 

Welcome brkaren4. This is a good supportive group.