Starting Chemo March 2015

Trvler

Got it. But the issue on your electrocardiogram was unclear?

Jackbirdie

Italychick- very interesting about EC vs WC chemos. Sounds like we're talking football! What you said makes me feel a little better about it, thanks. Keep up the great work with the various forms of exercise. You are an inspiration to me.

Jackbirdie

Yes the thing he mentioned about the echo seemed unclear and not a big deal. Had I decided to go through with the A, his policy would have been for me to get another one before each infusion to monitor very closely.

But since I didnt, I don't. I should probably get a copy of the report. But he seemed genuinely unconcerned, and his reasoning for why not to do it seemed logical to me. So I let it go for now.

SpriteB

Molly - I started mine the morning of chemo too!! I also got it two hours before I went into the operating room for my surgery. All I could do was laugh. I thought, "You've got to be kidding me????"

I had my hair cut short today. I've always had long hair so I felt that it would be too traumatic if it fell out while it was long. I wanted some control. I actually love it short! It feels so different and healthy. I'm looking forward to experimenting with it as it grows back in.

Italychick

Katy, for what it is worth, they are monitoring my heart function for the Herceptin drug. I think I will get tested every three months, or if I show any symptoms. I read everything I could about the drugs, and let's face it, they are chemo lol. All of them are going to have a small chance of something, but I want to live is the bottom line for me.

Another thing about heart function. Having high ejection fractions ( the measure of how much blood your heart spits out with each contraction) isn't necessarily a big deal. From what I understand, it is when it gets into the 40s that they watch you more closely. High ejection fractions, like over 75, can show cardiomyopathy which is the heart issue that young athletes that drop dead suddenly have. Mine is in the high 50s, and I am not worried a bit because I can do everything I want to. I think it is also lower when you are older.

Spriteb, having no hair is actually kind of liberating for me, and I have had long hair my whole life.

Dang, I can't stop blabbing today! Sorry!

DavisD

So glad everyone's still talking. Makes me feel like walking onto the set up Cheers, ha!  I feel like we could all pick up right where we left  off if we were to meet f to f some day.

I had a pretty good day. Got the Neulasta shot without problems so far. Just started having some tummy cramping/loose BM's from the chemo yesterday. Overall not too bad this time. Even had delicious tempeh tacos my wonderful daughter made for dinner tonight (we're both veggies). We're hoping to take the bikes to an old golf course tomorrow for a ride. Not much to crash into since I haven't ridden for a long time and last time crashed into a parked tractor trailer (see on earlier embarrassing thread). She goes back on the road Sunday and I'm going to miss her terribly.

On a sadder note, our kitty Rascal who came to us for comfort around 9/11/2001 looks like he might have had a stroke several days ago. He's over 14 and gets too stressed at the vet so we're just making him comfortable. He's getting scrambled eggs for breakfast and treats galore! He talks to us a lot but is getting up and down the stairs awkwardly but consistently. I see him going downhill every day and I know it's a matter of time. We just lost our little Elle two months ago.  She was 12 and had hyperthyroid. I took her in to the vet and after 450.00 they still weren't sure what was wrong and going into the weekend I couldn't leave her in a cage unattended. We brought her home with pain meds and the next morning she was clearly going so I swaddled her, gave her the pain meds and held her until she died. It's so hard to lose these four legged critters.

I forgot who asked about Zyprexa but please do some research! All I know is it's a great but powerful antipsychotic medication that does have a lot of side effects on its own. Haven't heard of using it for nausea but I haven't really researched it either. Just please proceed with caution..

I'm going to post something from better days before closing for the night.

Katy, I'm sorry about all the mx problems. I'll share mine with you sometime. I had a skin and nipple sparing unimx and have had at least four revisions. He did a good job but this time after the tumor was removed and a new implant put in, things are looking all deformed and I almost want the whole damn thing out...just not as important to me anymore. If I were having the kind of pain you are I would be pissed! This is no small matter and I will be thinking of you.

Good night to you all and thanks for the news, the banter and general sharing of your lives with me.

 

 

DavisD

From better days- my daughters freshman year at college 2009. And I had hair!

DavisD

IndyGal-I'm sorry I couldn't remember who asked about Zyprexa. You must be really feeling rough. I'm sending you a special huge hug through cyberspace tonight! Please keep me posted on what you decide to do/or if you decide to try it. I just worry a lot...the mom in me I guess..

slothabouttown

Italy- that's so interesting that your MO said taxotere s a west coast protocol, since you,Katy and I are all west coasters on that regimen. I've been driving myself crazy with worry that my treatment isn't strong enough since my SEs have never risen past just annoying. I feel like if I were laid out with nausea or headaches I'd somehow feel like this chemo was kicking more cancer ass. I'm relieved others are feeling this way too. Is adriamyacin considered a more comprehensive chemo drug generally? I didn't question my regimen in the beginning and now I feel like maybe I should have.

Also, has anyone done the duct tape or lint roller stubble treatment yet? I'm going to have a friend do a henna tattoo on my head as soon as my stubble is gone, and since it's hanging on longer than expected I'm thinking of helping it along.

Meme117

Diane what a great photo! So sorry about your kitty😞 miss my kitty he was 15 when he passed, such a sad time.

Hair is majorly shedding, it's thick so I hope it lasts thru the weekend. I'm thinking I may also have a 2 inch part if I try to style it. Just to vent - I love love love my hair and always have. Have had long hair, short hair, brown, auburn, blond, highlights, lowlights even pink tinted just for a party. I hate when others say it will grow back, it's ok. Well to me it's not!!! I don't want to wear a wig😠 hopefully no bald spots tomorrow.

I'm also having my heart monitored every 3 months. First test was good and I'm hoping next one will be too.

Sleep good ladies

rleepac

Hi all...checking in. Last I reported I was having a cough and it is still there but only occasionally and no fever so I think I'm good.

Massive fatigue past few days and couldn't even stay focused to read posts. I think I'm caught up now.

I had some bloodwork done today - ordered it myself (perk of being a PA). I'm curious if this massive fatigue is because of a low blood count part of my cycle. Will know tomorrow.

Tomorrow will be one week post AC #3 and I'm still battling nausea - even with the patch. Uggg. I just have to keep telling myself I'm 75% done with AC and then Taxol is supposed to be 'a walk in the park'. Yeah right! Have they met me? LOL...

Supposed to see BS and Onc/Gyn in a few weeks to check in and probably get my surgery date on the schedule. Oh joy.

I was the queen if all bitchiness today. I miss my friend (turned enemy) estrogen

Sigh...just wanted to let you all know I'm here and still alive.

Love to all my chemo sisters with a your many ailments and complaints we are in this together!

Bekah

eheinrich

I was wondering about the different regimens. West vs East is interesting. Since I didn't have many of the "classical" SEs I also joked about being on a placebo. When my hair started falling out my husband said, "Yay, you did get chemo!"

I was waiting for termite inspectors today at a currently vacant rental property we have. The 4h window turned into my whole flapping day spent in an empty house waiting so I puttered about cleaning up the yard, etc. Didn't occur to me that my newly mostly bald head was very very sensitive to the sun. My head is sooooo sunburned. Forgot that I now need to sunscreen it. Fun story: I went straight from hours of yard work to my LGFB workshop. While waiting to start I was chatting with an older lady, maybe 70. I mentioned the sunburn and she told a story of how when she went to a nudist colony her boobs and butt got all sunburned - I couldn't bring myself to ask how old she was when she went - I really hope it was recently

My LGFB didn't spend any real time on head covers which is what I really went for. The group leader also talked about God far more than appropriate in that setting. I have no religion and felt a little uncomfortable. I did get a big bag of stuff - cool stuff - so that was fun. Also good to talk to other folks going through this in person.

After a long day, nice to read up on everyone.

xo

DavisD

Slothabouttown-Love the idea of a henna tattoo. I looked for a place around here before I got my real tattoos at age 50! It was mostly to cover some ugly scars from my teen years but I've grown to love them.

Maryellen-You're the first person to have the almost identical diagnoisis-triple positive, Stage 2a and my tumor was just a little over 2 cm. I don't know why that feels important but it does. Maybe someone else is my chemo "twin" ha!?  Sorry just woke up with racing heart, etc and I remembered this happened right after last chemo tx too. Not as panicked this time though.  I had long reddish blond hair too and it's all gone. I don't dwell on it now that it's done, kind of a relief but I do find myself fantasizing about being able to run my hand through my hair or pull it back in a pony tail again... some day

Bekah-That nausea I think is what I feared the most. I've been taking the Compazine probably more than I should for that reason and it hasn't been bad. Your post reminded me they forgot to put the patch on me yesterday but if I'm not too bad right now maybe I won't be? Might call tomorrow.  Good for you ordering the bloodwork. We do have to be proactive in our treatment but it's tough when we're so worn out and fatigued. I am having the crushing fatigue late today accompanied by racing heart rate and higher BP. I took a Klonopin and I'm already on Propanolol for migraine prevention but it's not helping. After 1am so I'll give it another try. Hope you feel better tomorrow.

eheinrich-I can relate to that uncomfortable feeling. I consider myself spiritual but not religious and I feel at a loss for words when people start blessing me. I totally respect that and sometimes wish I did believe but it is what it is... Hope you find some comfort for your burned head. It will remind me to keep covered this summer.

Sleep tight all. My kitty has come to sleep on my bed and he never does that. I think his time is coming soon but maybe he is here for comfort like when he first came to us days after 9/11..

NurseJules

Hi girls! Sorry it's been so long but busy week prior to final chemo. Everyone wants to "touch me" and take me out. I'm so grateful, but it becomes fatigueing. Friends bring us through the journey with their support .

Final chemo done today. Feeling all symptoms everyone described, but looking forward to life.

Interested in different west/east coast treatments. Why? Also post chemo use of tamoxifen in ILC. New findings show femora is better, but only post-menopausal. But menopause can be initiated by drug called lupron. My oncologist was very dismissive of my questions, insists on tamoxifen. Anyone have this discussion yet? I have a master's degree in nursing, so will do more research. And perhaps change my oncologist. We really must be our own advocates!

One more thing, breast reconstruction in one month. Another month off work!! In addition to emotional trauma, cancer is frickin expensive! Anyway else thinking of their new boobs yet?

Italychick, you are a constant inspiration and thanks for starting our blog. Good to know you love san Diego too!

Jem27

Hi All,

When I asked my MO about Adriamycin v Taxotere, she said in fast growing grade 3, she used Adriamycin over Taxotere, so that's why I am on it. I don't know if that is of any help to anyone?

Regarding hair loss, mine started falling out last Friday,(Day14)) I sprayed it with hairspray to keep it together over Easter weekend !! Half of it came out in the shower on Monday, and the rest except a mowhawk on Tuesday. Or if it was flat I looked like Alf Alfa in little rascals so I got my DH to cut what was left to a 1/4in stubble last night. I too got the feeling that I had burnt my tongue on a hot drink and I now know why Desitin cream is needed !! This is one of the reasons why I love this site because when I see someone else has had the same SE it is reassuring for me.

On Tuesday, I saw a migraine specialist (Neurologist) OMG, I had to fill in a questionnaire on my type of headache/migraine. I had no idea there were so many triggers; if you miss a meal, certain smells, stress, hormonal, change in weather, certain foods to name a few. Then there was the type of headache: pounding, pulsing, over one eye, tightening, length it lasted, any sensations before, with/ without nausea/vomiting. Then there was a list of a least 40 medications, that I had to check off if I had taken any of them in the past. Some of you had mentioned medication that you take, and I recognized them on the list. Sharon and fellow migraine sufferers I wish I had a quick fix cure for you but as the Dr. explained each medication is specific to the signs and symptoms of the type of migraine you have and what actually triggers it. Then they give you medication that suits that type of migraine. She has given me two different types of tablets, if one doesn't work, I've to try the other.

I am back for round 2 on Friday so I will  let you know if they work plus cold pack and sea bands! I hope all of you that have just gone through another round are doing ok. Thinking of you all, hugs x

Trvler

Diane: I am so sorry about your kitty. I know the loss of a 4 legged friend is so upsetting. It sounds like you are making his/her final time very comfortable.

It is interesting about regional protocol. Same with my surgery. They recommended chemo before (I can never remember the correct terms) my surgery which is a apparently and east coast protocol (I am midwest) but my NOLA surgeon is from NY. I understand it is becoming more common but I don't know. I still see most on here having surgery first.

SC_Coqui

I had surgery first because we thought that all I had was DCIS. The day of surgery they found a lump and being that it spread to the lymph nodes I was scheduled for chemo.

I get frustrated and angry when I hear the mantra of "you don't need a mammogram in your early 40s" or that DCIS is treated "too aggressively". Situations like mine are reasons for both. People questioned my following my doctor's orders to get a mastectomy. He's the one with the medical degree, not me. My DCIS had pretty much taken up my entire breast. Anyway, just venting a little I guess. Today is my 3rd treatment and I'm a little port stressed (since it seems to always give issues).

IndyGal35

I agree with you, SC!

I also get frustrated when physicians or insurance companies decline MRI's for screening. My mammogram and ultrasound missed extensive tumor growth deep in my breast that quickly took me from from stage 2A to 3A. It made the difference between radiation therapy vs none. The MRI also detected fibrocystic changes deep in the other breast that was a critical factor in the dmx decision

lbrewer

please check out the cold caps thread before starting chemo!

Jem27

SC, thinking of you. Hoping that everything goes more smoothly for you this time round. Sending positive wishes and hugs your way x

avmom

Good morning, all.

On the Adriamycin/Taxotere front, my MO recommended dose dense Adriamycin and Cytoxan followed by dose dense paclitaxel considering that I have triple negative disease, and the dd AC-P is considered as aggressive a regimen as possible in those circumstances.

SC, I hear you about DCIS. My diagnosis was kind of the mirror image of yours, in that my mammogram and ultrasound found some evidence of my IDC, but neither test found ANY hint of the 8x8x3.5 cm bed of DCIS that was discovered during my mastectomy. At some level, I'm grateful that my biopsy margins weren't described as clear; otherwise, I might not have had the mastectomy at all. My breasts are/were a modest B cup, so 8x8x3.5 cm is a massive amount. The fact that it was invisible on both mammo and ultrasound is a big reason that I'll be having a prophylactic mastectomy once my chemo is done. I've met with a general surgeon last week, and see a reconstructive surgeon in May. If all goes well, I may be able to have surgery in August. That would mean an more recovery time, but 2015 is looking pretty much like "my medical year", anyway.

Rleepac, glad to hear from you - sorry to hear about the nausea. I'm still struggling with nausea as well, although today is a bit better. Last round, the nausea lifted for me on Friday night of week 2. It looks like I'm on a similar schedule this round.

I'm off this morning to get my blood work done for round 4 (LAST ONE) of AC. Here's hoping that my counts are ok. I've had a pretty rough round this time.

Trvler

Avmom: Yeah, I was looking at it the same way. 2015 is the crappy year. I am probably having my surgery in August as well.

I don't know why it is so traumatic when you know all of your hair is going to come out when it actually does. Lost about 1/2 in shower today.

molly1976

Trvler, that's when I shaved mine. Seeing it lying there in the shower was too much of a bummer every day. My leg hair has now stopped growing, which I guess is a silver lining but is also somehow weirdly traumatic.

Trvler

I have an appointment to cut it Sat. That was the only day the wig stylist was there so I had to go that day. I dread the shower now though.

Italychick

sorry Trvler, I felt the same way. I kept hoping against hope that I might be the 1% who wouldn't lose their hair. Instead, I am left with this crappy stringy stuff on my head that looks like a concentration camp survivor. And I have a stripe down the middle of my head that is tanned from where I wore my hair parted down the middle. Pretty comical

Trvler

I keep wondering how well the cold capping works. I didn't do it, because it sounded like a huge hassle. But I am curious if it works.

Jackbirdie

Trvler- I'm soooo sorry about the hair. I cannot even imagine the trauma. I was so chicken, as you know, I buzzed it before it had a chance. Thinking of you between now and Saturday. I'm hoping once it's done, you will feel better.

Joanna- good luck in the chair today. I hope your port starts behaving.

Diane- so sorry about your kitty. Our four-leggeds are so dear to us, and such good therapy. Thinking of you during this sad time.

I had very dense breasts also, and though they lobbied hard for a UMX, I didn't want to be lopsided, and was concerned that the uneven weight distribution would exacerbate existing back and neck problems. And I was very concerned about recurrence in the other breast. Of course, the morbidity rates aren't that different, and that is because they start screening more often, biopsy-Ing more aggressively, etc. etc. I didn't want to live with fear of recurring bc and waiting around all the time for more test results. So, I stuck to my guns and had the prophylactic BMX. And what did they find? Abnormal/diseased cell matter that I am convinced would have ultimately resulted in more IDC and more surgery. And without any assurances tht they would catch it early again. (She wipes brow anxiously)

Certainly one thing I have realized from participating in these boards is that mammogram and other screening needs to be done younger and more aggressively, especially if there is any family history or genetic testing that reveals a necessity. To both Indygal and Joanna- I am sorry that even with such screening, you didn't get dx'd and treatment as early as could have been, had the available screening been more successful. It is very scary. I hope they are continuing to work on improving the diagnostic skill of these tools and other diagnostic measures so that this won'tcontinue to happen.

Jem27- that was a very helpful comment about the grade of tumor also driving the decision for the red devil. I had forgotten that this was also a part of my conversation with my MO. Mine was grade 2. So, though I still worry I let myself down and did not do the most aggressive treatment I could have, I am 2/6 down with this treatment plan and feel I need to continue to have trust in the joint decision I made with my MO at the time. But by no means am I relaxed or supremely confident about it, and the women here who are getting "A" have my respect. West coast, East Coast, Midwest, or Jibbip

Karen30

I seriously considered cold caps but my MO was against it - and I wasn't willing to take any chances - I want the best bang for my buck so to speak and figure If I have to go through all of this I want to be sure I am getting the full systemic treatment- that being said I have read that they do work and there is a thread devoted to this topic- and I guess it all comes down to making a personal choic

Leighrh

Oh No!! Now I am going to really start obsessing about hair again today.... Mine is still hanging on. But didn't wash it today, just sprayed it up with dry shampoo and put it back up in my bun.  I looked at cold caps, they are a  huge hassel and your facility has to really work with you or you have to bring a handler to fool with changing the dry ice, and they are around 450$ a month to rent and that doesn't include the cost of the dry ice you have to buy.  I have seen people who have had great results though!  wish I had an endless supply of cash to do it    I talked to my MO about it and he said they just don't know enough about it yet.  I bet 10 yrs from now it will be the norm and people won't lose hair.

Trvler

I am amazed at how crappy mammograms are for diagnosis anyway. I have been mammogrammed and ultra sounded to death and I am convinced there is something going on in my other breast, too. The pains were very similar to the cancerous one but no one has found anything yet. I guess maybe having chemo first, I will never know.

Leighr: You are two days behind me in start. You haven't started losing yet?