Chemo in July 2015

Batesburg

Hello everyone! I have been following you all (hope don't think its stalking. ha ha) and haven't posted much.......still up and down emotionally......sometimes the uncertainty of this all gets to me even as I am responding to the chemo.

I had a major drop in WBCs and neutrophils early on but with neupogen I had the best counts yet last week since pre-chemo....like, WBCs 6200 and absolute neutrophil count 2.2.....it took changing neupogen from once a day for three days post chemo to once a day for four days and my carboplatin dose was decreased a tad.

It does take a while for the MOs to "get it right" on the appropriate treatment recipe and frequency for each of us, it seems.....they start out with what they do to the "masses" and then tailor it to our unique responses. You guys agree? It has taken me two months to realize it is OK to be unique as my body is adjusting to this onslaught that it has never had to encounter before......I try to speak in a loving and kind way to my body, people might think I'm nuts if I would do that in public.... smile.

I am now experiencing some light headedness and shortness of breath.....any others experiencing this? I know my hemoglobin is low (last week- 10.4) and I guess I am super sensitive to this as I was told those undergoing chemo can go as low as 8 and that is not unusual! WOW.

Cheers to a week of managing our bodies and our mindsets!!

Thunder7

Good luck today adarkadaptedi!

Batesburg

Yes, good luck adarkadaptedi!!!

Zuwali

Inkster: I'm sorry to hear about your reaction to taxotere. I had my bad reaction to taxotere on round 2. The nausea from the AC that they switched me to is getting old. Nothing seems to work to alleviate it plus I am sleeping 12 to 16 hours a day. My daughter is bringing me some ginger ale today so hoping that works. I wish you well on your AC treatments.

RuthElizabeth

morning. Adarkadapte, did you have cancer in your lymph nodes? I see you are also triple negative. All I was prescribed was the four AC treatments. My lymphs were clear. Just curious.

Getting ready to go for my neulasta shot. Having a little belly upset. More than last time, much less than first. I think I need to get more in my stomach.... I can't wait for this month to be over. I'm sure we all think the same. Have a peaceful day. Ruth

MissBee123

Thank you all for the kind words about my "haircut"! It's so hot here in NYC that I've had almost no choice…bare headed nearly all the time. I managed a wig for my mother's birthday dinner and a few scarves in the evening, but otherwise I've gone out in all my glory! I think the magical thing about the city is I am miles away from being the strangest looking person. No one pays me any attention.

I had my second PTCH today. They administered in that order, saying doing Perjeta first might help to mitigate side effects. I also avoided all fiber as last time my bowels ran their "great escape" route for nearly 12 days. I was pretty miserable last but, for now, I'm one day out and feeling pretty great. Only pureed foods as swallowing is tough, but otherwise ok! It's amazing how different I feel from last time. Had pureed cauliflower with a little salt, butter, cheddar, and sour cream for dinner. Highly recommend it as a dish.

Thunder7 Bald Pros:
My earrings stand out!
I had a legitimate excuse to shop and buy pretty scarves
My little kiddos that I work with in therapy are enjoying patting my "new hair"
I have so many new Halloween costume options:
Crazy Britney Spears
Minion
Charlie Brown
Lord Voldemort

gargengirl09 I am going to try some glitter one day! Why not?!

Cheesequake Your friends on FB are right. You DO look fabulous! I had acne, too, although my MO's thought it was the Perjeta (I had all the classic symptoms). They gave me the dexamethasone, an antihistamine, topical Clindamycin wipes, and tramadol for pain. Mine was debilitatingly bad and happened on day 3 of my first chemo. I'm on day one of my second so crossing my fingers that it works.

Jbandkb1 I don't usually advocate making a fuss…BUT…I believe you said your husband is a police officer? If they fire him for taking time off to help his cancer-striken wife, I'm willing to bet the local news media will be awfully interested. My husband can't technically take the time off either but his bosses are pretty aware that it's just one of those times they have to let him.

adarkadaptedi Capt. Jean-Luc Picard you say? Sounds like you found yourself a new Halloween costume Good luck with your last round!!! So happy for you!

courtleboo Good luck with your summer cold! Hope you have Netflix or Hulu to keep you in good company.

Twnkltoz Welcome! Glad you are are here.

Batesburg I definitely get light headed the whole first week after chemo when I try to get out of bed. I find I need to be awake 5-10 minutes before trying to get up or I'm stumbling everywhere.

JillyB

Mary- I spoke to my doctor today about my menstral cycle. She said it is very common for those of us in pre-menopause to have spotting and not a real period. She was not concerned about it.

I got the all clear to get back on the chemo train since having a high liver count. Doc says that it's not permanent damage just a reaction to the taxotere. So I guess that's good news, right? Hopefully side effects won't be so bad this time.

Here's to a great day tomorrow.

Suzanne1971

hope it went well Erika! Or goes well? Not sure if it's today or yesterday. 😳

Round 3 today for me- and new SE's showing up weekly. This week it's Hot Flashes! Anyone else? They are not fun, to say the least.

And I screwed up and hoped melatonin would be enough to help with sleep while on steroids. Boy, was I wrong. Will return to Benadryl tomorrow.

Sleep well gals!

mdoc524

hello All - Day 6 post 2nd AC - and just downhill hill - shaky, unsteady, sooo wiped & constipation that reversed to the runs - UGH! Same as 1st AC so I guess this is my reaction! Anyone else trying to work thru this - not easy!

Twnkltoz - sorry you have to be here but so glad you found us - glad to hear you are doing well!

Inkster - sorry to hear about your bad reaction & now switched to AC - good luck! My advice is take the nausea meds but watch the constipation they cause - don't over manage the constipation - if you are like me it will turn on you!

Courtleboo - I have slight leg pain - take the Claritin with Aleve for several days after Neulasta & helps

JillyB - thanks for sharing & sorry you have same symptoms - my spotting changed to all out bleeding again the last 2 days & driving me crazy... I feel like I have had my period since starting chemo!

Adarkadaptedi - hope last AC went well - must feel good to be done with the Red Devil

Batesburg - stalking is welcome HaHa! I experience light- headed / unsteady days 5 - 10 on AC .. As far as shortness of breath - I find that my upper chest just feels heavy like I am getting a chest cold - both go away for me by 10th day just in time to do it again!

I go tomorrow for Counts & nurse check - fingers crossed my WBC & neutrophils did not drop so low - I feel the same as round 1 so I am thinking they did...

Hope everyone feeling OK today! This does suck but we can do it - hugs to all! 💪🏻❌⭕️👍

Mary

Gretagirl

Hi all. Just checking in. More stomach issues this time have had to use Zofran twice. Ick taste. A little more tired. I will feelgreat then like uh oh. Crazy! Y'all have a wonderful day. It's raining here and boy do we need it! Leaving later for herceptin and labs

gargengirl09

Hope everyone is feeling great today. I can't shake the fatigue from AC #4. Each day gets slightly better. Went to acupuncture and the store for a few things today! Big day out!

Has anyone had any vision changes since starting chemo? I went to the eye doc in May before being diagnosed, and needed new bifocals. I think my eyes have gotten worse since seeing the eye dr. They seem to fatigue easily as well.

6feetover

Thank you for the well wishes, lovely ladies!

Had my Neulasta shot today as well as a follow-up echocardiogram–hoping to NOT have any detrimental changes from the AC! So I've got a 2-week break, and then it'll be Taxol and probably Carboplatin for 12 weeks. A whole new set of side effects to look forward to, whee!

RuthElizabeth (you can call me Erika, if you like!): I've only had 1 lymph node biopsied thus far (none removed - that's down the road when I have my surgery), because the radiologist who'd biopsied the area that turned out to be malignant discovered a "plump" lymph node in the adjacent armpit during the follow-up ultrasound and didn't like it. She got her team together right then and there, so it was a same-day procedure; unfortunately, the "plump" node was also malignant...

6feetover

Mary, et al.: I know this is all TMI, but I've been experiencing the same breakthrough bleeding/spotting that you've been describing. I assumed it was just because I'd recently gotten off The Pill (which I've been on for long stretches, over the years, because of my high risk for ovarian cancer and terrible fibroids!), but I'm not so sure, now. Also (and this is REALLY TMI, sorry!), I found out in a very unpleasant manner the other day that my tissue in "that area" (vulvo-vaginal) is very sensitive and now (according to my doc and her team) just as susceptible and prone to sores, tearing, etc. as other mucosal tissue throughout the body (i.e., mouth, esophagus, etc.). Holy crap! YEEEEEOWCH!!! My poor DH thought he was at fault for hurting me; nope! Yikes. All I can say is, be very, very careful and use lube! This really sucks.

mdoc524

Erika - thanks so much for sharing - THIS SUCKS is an understatement! Hang in there I am with ya! Good luck on next phase hope se's not as bad as AC! Have a nice 2 week break!

Mary

RuthElizabeth

hi all, Gargengirl, my eyes are a mess. They itch, are dry, and super light/sun sensitive. I was going to do my eye appointments before all this and I'm glad I didn't. They are really blurry. Reading isn't so great either. Good luck with them along with everything else.

Erika, I keep seeing that the triple negatives seem to be doing more than the AC. My nodes were clear. I think I read too much on the triple negatives. And that is what scares me. Not that I want more chemo, but I want a good fight too. So maybe, it's because of the nodes. It is my number one question after next AC.

Today was my bad day, so here's hoping the rest of everyone's se are better. I hope to be able to get my walk in tomorrow. Slept most of today. I know I didn't get my fluids in much at all. Although, I did have a good salad today, here's hoping it will help the coming constipation. A little hint that helps me. I love the cold coffee, caramel macchiato, I have a full glass every morning, and I can usually go to the bathroom within half an hour. I so enjoy my glass, and then, haha, the extra help.

Love and peace to everyone. Please know that each and everyone of you have made my journey, that much easier. You each bring something to the table. We are all a loving group of angels for each other. Please know how blessed I feel to know each and everyone of you. Here is to our 5 year cancer free, on line party, when we all finish our surgeries and treatments. Love you all ladies.... Nigh

gargengirl09

Ruth Elizabeth--glad I'm not the only one. My eyes are awfully sensitive to light as well.

I tried to call the MO today with a few strange symptoms and they didn't call me back! What?!? I've been trying to drink coffee…..for the same reasons as you. Some days coffee just doesn't taste good. I'll be glad when drinking something isn't such a challenge…some days are hard to get all those fluids in.

Erika-we are on the same schedule. I'm due for my echo next week. Hoping the Taxol is easier. I need to read on some of the other boards about SE and how people felt on Taxol as compared to AC.

Was ready to book a trip over Christmas, until I called the Radiation Oncologist and he said no way can I miss more than two days (besides weekends). Talk about a let down. Oh well, we'll go in February or March. Gotta have something to really look forward to. My radiation oncologist also suggested having a big party at the five year cancer free mark!

Did anyone see the NBC nightly news tonight about the target therapy they are using for other cancers? Pretty interesting story. Rather than look at where the cancer is (brain, lung, etc.) they look at the biological characteristics and treat it that way. Really interesting.

madrew

Hello ladies! My eyes are a bit messed up as well. Makes wearing contacts uncomfortable at times. I've never been much of a coffee drinker, but I did have a latte yesterday, and had no sign of constipation this AM. Of course, I did have a large bean burrito as well. That may have also helped. My taste buds have been awful--non existent. However, yesterday my son gave me a purple Skittle candy. Just one. I think it might have been the most fantastic thing I have ever tasted! It was so fruity and juicy. I yelled out to him, "I can taste it! My taste buds are coming back!" I appreciated every second I had with that candy.

I am still achy every day. My white blood cell counts are back up though so I can function almost like a normal person for a few days. My 3rd chemo is this upcoming Tuesday. I can't decide if I am dreading it or if I'm excited to get it over with and cross another one off the list. I take my college daughter to the airport on Saturday for a semester "abroad". While I wonder how her experience will change her, I also find myself wondering who I will be when she gets back. My chemo will be done. My radiation will be done. I will be healed from my surgeries. I'm pretty sure I won't be the same person I was before all of this started though. I wonder the same as I read your stories. You all had lives and jobs and families before this started. We would have never met. Yet now you "strangers" probably know exactly what I am going though. I thought of you all the other day when I was hesitant to go to the store in my rapidly balding state. I just knew someone was asking themselves the same questions. Do I go as is? With a wig? Scarf or hat? Do I even care anymore?

Hoping for a good day for all.

courtleboo

madrew- I am right there with you about the skittle.

My kids and husband know I lose my sense of taste so they always stare when I eat something to see if I can actually taste it.

I've also found sour skittles to be very tasty. And my husband got me a symphony chocolate bar, it was heavenly!

Twnkltoz

i don't have the eye or taste bud problems, but my nose runs almost constantly and I sneeze a lot. My bf keeps asking if I'm OK!

Bliss58

Hi all, just checking in as I've been out of the loop lately, but catching up on all your wonderful posts. It sure is comforting to read them all and know that we are all in this together! I'm having my 3rd treatment of TCHP this morning and fingers crossed that SEs will continue to be mild and manageable. Still haven't gotten my pic posted, but maybe soon. Best wishes and hugs to you all.

Bliss58

@Twnkltoz, Welcome! I too have a runny nose, but watery eyes, too. I took a Claritin yesterday, thinking it would quit, but no, still running!

Suzanne1971

@bjsmiller -we are on the same treatment, almost to the day, I think! I just had my 3rd on Wed. Hoping you are managing all of this! Based on your profile, I assume you are also doing chemo as neo adjuvant? I don't have anything to compare is to, but I feel kind of good about getting chemo done first. I hate this toxic feeling, and think I will be able to manage pain better than toxicity.

Just taking this one day at a time, as best I can. This is normally my busy season for my business (holiday), so I'm really struggling emotionally with how my biz will be this season as I had to cancel my big trade show (where I get most of my business from). Hoping some timely emails to clients will drum up some business. I need to work (not just for $, but for my sanity 😜). I'm in the arts, and need this outlet.

How are all of you managing work? Are you still working?

I do have a day job too, and have gone back with a limited schedule. If it isn't clear, I'm a workaholic! So this chemo pace is tough on me.

Wishing you tough gals a great, SE easy weekend

Twnkltoz

i teach ballroom dancing and write. I had to take leave from the dance studio, of course. I cut way back on writing but still do some. Luckily, my boyfriend supports me. This is the first time in my life I haven't had to work. This illness would have been devastating any other time.

Gretagirl

Twnkitoz I keep a runny nose and sneeze too. I use Ocean nose spray and Ayr for it. It helps. My nose will be very sore for a couple days then ease up. I woke up to a bladder infection at 4:00 this morning UGH!!! Praying antibiotics kick it and I don't get off schedule or have issues

Peabrain

hello everyone!

I am crawling out from under Dose 3 AC. Only takes 5 days now for the nausea to start to abate. My nose runs all the time, my tastebuds are completely wonked and I can't concentrate enough to even read. I am so brain dead, I don't get bored. I spend long hours watching the birds and squirrels and clouds in the back yard.

I work supervising construction, usually 25 projects going at once. With my slackness, I have no idea how I could have continued to work during this, so I have the rest of the year off. I feel extremely fortunate that we can handle this. The social security disability and soon the long term disability insurance will make this very doable. I figure I am in chemo until December. Then I have to recover from that and have my ovaries removed, and finally my port. I am hoping to be done with all surgeries by end of year. Then take a trip in January to somewhere tropical and head back to work with a tan fuzzy head.

Hats off to any of you who are working, taking care of kids, vacationingor functioning on any level! I have totally wimped out.

@ruthelizabeth: Before my nodes came up positive, I was scheduled for 4 AC and then 8 Taxotere/Carboplatin. When the nodes turned out positive, I got an extra 4 doses of the TC. My MO says this treatment is based on studies coming out of Germany. Erika, Batesburg and other TNs might have other info, but based on our treatments, I would push your team for more info on your treatment plan and the risk factors they are balancing.

6feetover

Peabrain: As an aside (and if you'd like to discuss via PM, I'm all for it): how did you go about applying for SSDI/long-term disability insurance? I've been told that I'd probably be denied..?

Peabrain

Hey everyone, let us know if this topic should go offline, but I thought others might have info as well.

@Erika: Some of it depends on what state you live in.

I filled out forms for three different programs. Each of these programs also required forms to be filled out be a doctor. My MO has someone who takes care of this and the office will use pretty much any dates you want, no judgement on how long you want off.

Family Leave : this is a federal program that allows me to take a three month leave from my job. Unpaid, but they have to hold my job for that amount of time. I filed actual paperwork with my HR dept who had to fill out some of the info and then sent it on.

SSDI: I am in CA and am not sure how it's done in other states. After a week off work unpaid (there is a weird formula about vacation, sick, bonus pay that determines exactly when you are officially unpaid), I was eligible for state paid disability. I applied online, edd.gov. Then I got a receipt number and my doctor had to file their portion of the form. So far, they haven't processed my full claim, even though I was eligible back in June. I expect all the paperwork will eventually come together and I will get backdated checks for the whole time I was eligible. It is just a matter of getting through the bureaucracy. Fortunately, we have my DH salary to live off of in the meantime. I'd be bummed if I had to have the SSDI checks to live on. I don't know how long this program pays out. Maybe until I am released by the doctor to go back to work, or maybe until I have a job?

Long term disability insurance: this is actually a private insurance policy carried by my employer. It kicks in once I've been off work for three months, September. I think it will pay half my standard salary, but am not sure if they subtract the SSDI from the total or not. I filled out a paper form, my doctor filled out additional sections and then my HR person did the rest.

Health insurance: when my three month leave is over, I will have to pay COBRA rates for my health insurance. Not looking forward to that.

Although my work is not required to take me back after I am gone so long, I fully expect that I will return to the same company, so I have not been keeping track of other possibilities. If it didn't work out for some weird reason, construction is booming right now, so at least I'm not worried about that. Someone will want the bald woman!

Let me know if I didn't answer your question or there was other info you were looking for.

melinda531

Hi All,

Had my 3rd TCH yesterday which makes me halfway done!!!!

Bjsmiller and Suzanne 1971 - we are on same regimen (mine is minus the 'P' - just TCH) and we're almost the same day! Hope you are both managing well this week. And Suzanne - yes, I work full-time and have managed pretty well. I've finally gotten my "rhythm" down I think and can anticipate which days are going to be the roughest with my stomach issues (days 5-6) and plan to take those off and the rest just go day-by-day. I work in an office and manage a team of 12 people so it can be challenging (they're mostly lawyers!) but my boss has been pretty good at working with me on schedule so hopefully I can continue without too much disruption.

Yesterday, they decreased my taxotere a little more (had previously decreased 20% due to my hospitalization after first one for neutropenic fever and colitis).....this time due to off liver counts in blood work. They said they'll see how that goes and if liver counts go back to normal they might go back to previous dosage (20% less dosage I should say, because I do NOT want to go back to full and end up in hospital again!). They prefer to decrease dosage rather than stop/interrupt treatment. Hoping maybe my stomach issues will be a little less given less taxotere this time but we'll see.

Taste buds seem to come back a little bit this week which was nice.....mind you, this just meant that not everything tasted like nothing but it sure was nice to taste a little more even if for a week.....I'm sure next week I'll be back to tasting about 5 foods/drinks for the week!!!

Hope you ladies are all having a minimal SE week and ready for the weekend!!!

Twnkltoz

I still taste things, but my tastes have changed. I don't want sweet drinks, and strong flavors and smells, like garlic (which I usually LOVE) turn my stomach. I have a good appetite still, but nothing ever sounds good.

RuthElizabeth

morning. Just coming out of my fog too. Peabrain and I are on the same AC. Third one down, and had three days down this time. Now, I need to try to eat and drink. It's such a struggle. I'm getting some pedialyte today to help. Last AC the 31st. Hoping se aren't too bad. We are still going camping for Labor Day weekend. I'm looking forward to it as well as dreading it. I just don't want to be sick while there with the grandkids. They still aren't sure why I'm not my ole nutty self. I'm the weird grama. I miss all that.

Monday I go to the lymphodema therapist. Swelling is down, but my hand and upper arm still hurt. So, I'm anxious to hear what she has to say. And I'm told I get a message oh I can't wait. It will be so relaxing.

Here's to a great weekend for everyone. Love and peace to all of you. I'm off for a few errands. Ruth