September 2013 Chemo Group

VintageGal1111

I ordered Blood Builder from Amazon (tablets) & yes it has beet juice but is pill form!

audra67

I posted this on other thread so sorry if repeat...but questions!!

I woke up to excruciating pain in lower back and hips...is that the nuelasta pain?   It was like back labor pains...and I had natural childbirth x 3!  REally bad!  Wondering if I even needed the neulasta...my wbc was 2 last round  which made me feel like death...but I got wbc yesterday and it was 4...the nurse said she didn't think nuelasta was working yet as I got it on Monday...so that was day 6 without neulasta working?  Maybe I didn't even need it and now these pains...do they last or come and go???  HELP!!!

Also had my first hot flash when I woke up this am...so then I was fully awake when my rumbling tummy made me get up to use bathroom, again.....

Now I have lower back pain and headache (from being tired not enough sleep) and feel like crap.

was hoping to get better daily, and not happening and now I'm mad...

What do you all think about the neulasta???  Was that the bone/muscle pain?  I have been taking Claritin...daily...so obviously that doesn't help or it would've been worse without it?

Does anyone NOT take neulasta and have ok wbc? what to do....

lighthouselady

Audra - yep that's the neulasta pain! I pretty much have to take my percocet and/or ibuprofen 800 around the clock for a few days until it passes. Are you doing dose dense or every three weeks? I think Neulasta is a must if you're doing dose dense. Talk with your MO about it though. The worst of it lasts a couple of days.

audra67

Shoot-  I thought that's it...I also am having like a chest pain on & off and weird hopping in my stomach like flutters...I am doing every 3 weeks...and only got neulasta as the first week after first chemo wbc2 then 2nd week only 2.4...but by 3rd week it was 6. 

I'm thinking I don't want this again, I'd rather get low wbc and be exhausted??? Not sure I would as I typed that...hard to pick my poisons...ha!

Just having all over body aches and feel like a good massage would do wonders, but can't lay on these fake boobs still- they are numbish but still feel enough to hurt if they are squished..nice. 

Interestingly my ps said that the nerves eventually recreate pathways so they will actually have more feeling...interesting.

PeacockGirl

Audra..yeah that's neulasta for you! So sorry. Hot baths work wonders..as do pain pills. Neulasta sucks but I will take it compared to being hospitalized...such a double edged sword. I would caution you about massage..the one time I got a massage during chemo I was in such a bad way the next day...I think it released a bunch of toxins into my system like massages usually do and I suffered the worst pounding heart pain ever! Now if I do one I ask for just heads hands and feet still relaxing without messing with those big muscle groups.

Chiming in on the lumpectomy vs mastectomy...I agonized over that decision. I am triple neg but BRCA negative. I too wanted someone to make my decision for me but we have to come to it ourselves. It was probably the hardest thing I've ever been faced with. Call me crazy but if my cancer comes back I really don't think it will be in my breast...and having them off right now seemed too knee jerk to me. Maybe it helped I was assigned a mentor who did lumpectomy and is 5 years a survivor...maybe for whatever reason it was my breast surgeon who was not steering me towards MX...but telling me either option would give me an equally positive outcome. Day one I adamently wanted them off...by day 10?after diagnosis I couldn't live with that idea anymore. When I came to my decision I was empowered and didn't cry anymore..I should have felt they way about a MX and never did. You will know when you come to the decision that is right for you. Follow your heart and gut about it. Talk to your friends that you love and trust. It's all a gamble really...none of us get out of this life alive. Make the best of the time we have. If mine does come back in the breast I will deal with it then. I will cross no bridge that hasn't been set before me.

lighthouselady

Peacockgirl - that is a great attitude. Even though we can all relate to each other in some way through this journey, we are all individuals and no one decision is going to be the right one for everyone. My best friend had the exact same diagnoses as me - stage III, lymph nodes, BRCA2+, chemo first, bilateral mx, rads, etc. The only difference is she was HER2+ so she had Herceptin. Anyway, she opted not to have reconstruction. She said she couldn't get herself to go through another procedure, and her doctors advised her that any reconstruction she had would make it difficult to discover a recurrence if there was one, because of where her original cancer was. My surgeon pretty much talked about surgery and reconstruction in the same breath - so it just goes to show that each case is unique. My sister-in-law had a lumpectomy and then chemo and hasn't looked back. She was stage II.

While I'm glad the BRCA results make my surgery decision easier, I'm not happy about having to have the surgery. I would love to have had the option of a lumpectomy. I hate the thought of losing my breasts. I hate the thought of having sex for the rest of my life with no feeling in my breasts. I hate the thought of losing the parts of me that nourished my two babies for the first year of each of their lives. But.... it is what it is. The bottom line is I want to be alive, and I want to do whatever I have to to stay alive for as long as I can. So each of us has to make whatever decision for that that will give us peace. :-)

PeacockGirl

Michelle..had I been BRCA + my decision definitely would have been different. I have a friend who was diagnosed in her 20s, opted for lumpectomy chemo and rads, and then recurred 19 years later in same breast and with mets to the skin as stage 4. In the meantime met her birthmother who subsequently died of breast cancer the year after their reunion and when she recurred she discovered she was BRCA +. And triple negative (Not available her first go round) Between cancer diagnosises she had regular implant surgery twice and when BC came back she opted for mastectomy with recon that went bad on her radiated skin AND she had to go thru rads again..with one recon and a failed recon in the affected breast..what a mess. The upside? Today she is NED and alive. Us BC girls are tough! But each of us has to come to that strength in different ways.

kjsimpson

Chiming in on the mastectomy/lumpectomy decision... My choice was a little different, perhaps because I am stage III and/or because I have IBC (a very aggressive iteration of BC)... do I have them take the 'clean' breast (no cancer found in the right breast) too with a double mastectomy or just the cancer infested left breast? 

After a lot of thought (more than I thought I would have about it), I decided that I want the least chance of recurrance.  I don't want to be going through this again and muttering, 'coulda-shoulda-woulda'.  My first priority is being here for my kids and meeting my grandchildren in a few years.  I am not confident that if this cancer comes back that I will have a better chance next time of fighting it.  So, after consulting with the doc (who said the choice was mine and they were good either way) and a lot of thought, I am having a double mastectomy (radical, i think they call it) without expander implants for now. I do not want anything to interfere with killing this cancer for good with the first round.

No one can or should make these decisions for us.  Give us the information and each of us can make the best decision, with the best information available, for our circumstance and move forward with faith.

Several years ago, I was privileged to hear Retired General/Sec State Colin Powell speak, in person.  Someone asked him what his biggest regret was in his very illustrious career.  His response was one that stuck with me... "I don't spend a lot of time looking in the rear-view mirror.  I want to focus on what is ahead, not the mistakes or misfortunes of the past". 

Make what you think is your best choice and keep moving forward.  ;-)

hockeymommy

hi ladies,

Lumpectomy vs mastectomy ...such a tough decision. I chose to have a mastectomy of the right breast. My decision was based on my age 32 years old, tumour size 2.5cm , invasive ductal carcinoma , one lymph node positive and a grade 3. I am a worry wart to begin with and I know that I wouldn't be ok with a lumpectomy. The decision was something I had to be able to live with. I asked my surgeon to do both breast but she didn't want to delay my chemo any longer.so now I have a consult on Dec 16 to have the other breast removed. I also have a consult on Jan 8 for a hysterectomy.

Today I got my port out!!! I was so nervous but it really wasn't that bad. Another stepping stone on the path....oh and my last neupogen shot tonight!!! Yahoo!!

lighthouselady

Yay for being deported Hockeymommy!!! I'm going to Dallas next Thurs to meet with my BS and PS and I plan to ask my surgeon about my port. Hopefully they can just take it out when I have my bmx. Do they do that, I wonder?

KJ - I'm the same way.... Stage III and grade 3, so very aggressive on top of being BRCA. No real choice for me.

So where was everyone today? This board was QUIET! LOL I thought about you all when I was snacking on clementines earlier. :-)

I went shopping this afternoon and bought a few button/zip-up shirts for after surgery. I'm not a big fan of them, so I didn't want to go overboard (or spend a ton of money right before Christmas!), but I got a couple of button-up denim type shirts, a button up sweater and three thin zip-up hoodies.

Question for those of you who had surgery already - did you bring clothes and/or pjs to wear in the hospital, or did you just wear whatever they gave you? I'm not a huge fan of those stupid gowns, and I'm always cold. I was thinking I'd bring a pair of pjs (button down top) and a hoodie & yoga pants.... something to be comfortable but look presentable. I'll also have a 3 hour drive home when I get out, so I need to actually be dressed. :-)

Miss_Mama_Bear

Thank you all for your input and your stories and support. I really hate having to make this decision (as I know you all have too) I *think* I have decided though. I am going to do the BMX. Reconstruction options were difficult for me, too. I had thought about no reconstruction, which is what would be best for my family and my living situation, honestly, because less surgery, less time away from my kids etc. I think in this case, I need to be a bit selfish though. It has been a difficult thing for me, learning that if I take care of myself I am, in turn, being a better parent. I think that if I didn't do reconstruction I would be depressed. Plus I am single and looking (I have recently decided that I may start dating again even in the midst of chemo-is that weird?! I am ready though; I feel more whole and ready to go on with my life than I ever have) Anyway... I am going to try my best to arrange to have a DIEP procedure done instead of implants. I will have a long life of lifting ahead of me and I have often wondered about issues with that and the implants being under the chest wall. I have seen a lot of women having issues with them and the RO told me it is something like 20% failure if you have to have rads. I don't think that I will likely be able to, or want to have another surgery later after the "touch up" and nipples. I want to just be done. Plus implants need replaced every ten years...that could be 6 times if I live as long as I want to lol. I have NO idea how to accomplish the DIEP though. The closest hospital that does it is 4 hours away and I could possibly be in there for a week. My sister is going to come down but I am not sure for how long. I am doubting she will want to be here for a full month, which it might take me that long to be be halfway back to normal. So...I should feel relieved that I have finally made up my mind, but since I have chose the most difficult avenue, not so much lol.

KBeee

LHL, i am eating a grapefruit as I type!!!!! I brought my own PJs, but for the top, I had to wear the gown for a while because the IV. if i was there another day, I would have been able to change. I did wear my cozy bottoms though...almost immediately after surgery. I actually managed to avoid a urinary catheter, so that was really nice!

Hockeymommy, Yahoo on the deportation!

KJ, I like the quote...words to live by after is...there are no set in stone decisions, so we need to do what we feel is best for us, and move forward with no regrets or what-ifs.

Audra, Talk to your MO about symptoms. I had low WBC and neutrophils after round 3 and spiked a temp which landed me in the hospital for several days...and they gave me Neupogen while there since I had not had neulasta (which was the MOs choice...wanted to see how I would do without it).

Simplelife, You DH sounds like a keeper. I hope you are enjoying your movie marathon.

Prior to today, all of my hot flashes have been at night...had one while driving today, so I took my wig off at a red light. I wish I had a camera to record the face of the lady in the car in the lane beside me! She looked like she had just witnessed a murder! The hot flash passed quickly, so I threw a hat on my head. I am glad that I will (hopefully) have hair by summertime. I would not want to be dealing with the wig and hot flashes in the summer. There is no "good" time to have this, but if I had to choose, I think I timed it right!

Has anyone else had no scans? My MO refused because I am node negative, but I know it can spread vascularly too. It is very stressful since only the sentinal node was tested...and that is the node it drains into 90%of the time. I did chemo for the possibility of the other 10%... but it still creates stress and worry. I may ask my BS his opinion when I go for my follow up with him in January. It is too late at this point, but sometimes my MO is a bit too lacksidasical for me (if that is a word).

Viji

I wore my colourful PJs and also came home in them.

I have not had a scan. No one has suggested it yet. I just want out of all this, just for a while....

KBeee saw you on the video clip. It must be a good feeling, being out there doing good for society.

KJ, totally agree with everything you say. Everybody has an opinion but it is totally up to us to decide. Recurrence is a dirty word but some people never have to face it. Others are not so lucky. We are at the mercy of chance in most cases.

I have been eating nice juicy mangoes!

Enjoy the weekend folks....

LisaSp

Josgirl; Thank you so much for the info on tamoxifen because it gives me the idea of what to discuss with my MO when I see her in my follow up in 2 weeks.

Oh and today I finished rads and active treatment! Yay! No chemo, no surgery, no rads, done! Of course,now it's tamoxifen and follow ups, but that is so preferable.

Everyone, I hope for the best as you continue chemo and finally get to the end of the road. Soon!

About hair growth, I am now a bit over two months out and my hair is making definite strides. At first it was fine and white, but dark hair is popping up. It's thin on the top but I remain optimistic. All my old hair fell out before the new hair came in, so for a while I had quite the Yule Brenner look. At the moment, most of it is about a 1/4 in length, and more is growing in.

Viji

Great to hear from you LisaSp. Keep striding forward!!! Please let us know how hair growth progresses.

audra67

LIsasp-

Hooray for you !  That must feel amazing! DONE!  Yay!

Kbee-

I am node negative too, and hoping for scans at end of this and I believe he mentioned I would have them when we started..

Mamastewart-

That's a good decision.  But yes, the biggest healing too...I believe you stay a week in  hospital, our friend just did that as her BRCA was inconclusive and her mom died of cancer...anyhow she is in ICU still x Monday, then they move to med/surg floor until you are able to go...but then you have your own parts, I wish I could've done that as well..but not enough stomach to use...

I had drains, 4 , and they are a terrific pain...I bought tank tops with drain pouches otherwise you have to pin them to clothes...

I have implants, and was told they may outlast my lifetime and do not need replaced usually...hmmmm....

I had implants before the cancer.  I was 98 pounds and looked like a boy after my 3 kids and nursing and all...anyhow got saline implants under the muscle...had them 12 years before found this...and these new gummie kind supposedly are way better...

I am having awful headache the last 3 days, body aches too , I know it 's the nuelasta but I cannot function with a severe headache, I called Dr yesterday, and nurse said all normal with nuelasta and I could discuss not getting it next time..great.

Woke up at 530 like clockwork to use bathroom #2!!!  This is getting annoying, anyone else with this problem??  I have been using psyllium fiber for last couple of months as I wasn't as regular as I could be and didn't get enough fiber, well this is great cause now I'm going even during the day and obviously emptying myself out..but I hate the waking up early thing with stomach pains, that started with anxiety when I was first diagnosed...with that awful panic feeling and worry...I thought I was over that or it's become a habit..yuck.

Anyhow have the heat pack on my neck and sitting in the dark- hoping to go to pep rally at my daughters school this am..she is a cheerleader and they have a Christmas pep rally today...last one of year...dread getting ready and all, love staying at home and not putting on makeup and all - if I go out I feel I need to wear makeup and a hat or wig or scarf and coordinate it all with clothes, just seems like a lot for my achy self...where I should be thankful and happy to go out!

And is this correct, since I had the nuelasta shot my wbc should be up so I shouldn't have to worry about germs??? Is that right?

Miss_Mama_Bear

It's funny how -again- we all get different info from our doctors, surgeons this time. I talked to my sister in SD last night and she is on board for helping and staying for quite awhile. I just am going to have to have a fundraiser or something to raise the money to get her a plane ticket to come down here. Then her husband can come down later whenever she is ready to go back and get her. I still don't even know if this is going to work, time wise. I know it takes about 5-6 months to get in to see this doctor, which would be fine if I am having rads (because I am still having the lumpectomy next month), but if I am not having rads, I am thinking I will probably have to have two surgeries (mastectomy soon and then DEIP later) and I don't know how that will work. Plus, that is exactly what I was trying to avoid. I think they got another doctor in KC that does the DEIP so maybe the wait time won't be so long. A girl can hope, anyway.

PeacockGirl

Random musings on a Friday morning: Mamastewart you could do a "go fund me" website. people can donate$ there, even anonymously to help with your sister's traveling expenses. to help with any expenses for that matter

congrats hockeymom on the port removal! I can't WAIT for my appointment on January 8th to get it out. And Miss LisaSP. dunzo? So totally happy for you. Now you get on to the livin'. You give us all that glimmer that there is an END to all this active treatment stuff.

As for scans, my MO said I will get another abdominal CT after treatments but everything else just gets managed symptomatically. Now the nurse practitioner said I will probably get a breast MRI because of dense breast every year. Great. Give me drugs. I found that test to be the WORST of all of them. I'd rather drink gallons of CT contrast dye than do that prone breast MRI again. UGH.

I'm getting some neuropathy in my fingers, the middle toe of my left food and yesterday the whole backside of my left leg was buzzing. Also my fingernails feel extremely weird. I sometimes catch the sides of them and feel like they will rip right off.  I am seriously NOT diggin' the Taxol. My husband and I had a long wandering chat last night about chemo treatments. Like really. who determined 4 doses of AC and 4 doses of Taxol was the magic number? What if I stopped at just 3 Taxol? Where's all the data of dose dense chemo every other week as opposed to the data of every 3 weeks before Neulasta/Neupogen were discovered? Do the survival stats and recurrence rates all get lumped together? Is there really ONE or a million cancer cells still left in my body after 4 AC and 3 Taxol treatments? It makes my head spin sometimes. I guess things are just getting hard because I actually see the end of chemo in my radar. I really dread going thru it one more time with neulasta and all it's craziness that comes with it. But I will do it.

Art123

my wife has tolerated her first AC treatment well. Just intermittent nausea and fatigue. Her second one is Tuesday. Will these side effects be the sane or get more pronounced after each AC. Still waiting for brca results

VintageGal1111

PeacockGirl

I wonder (but try to stop myself LOL) about the treatments too. I had 4 dose dense A&C. But will have 12 Taxol (with Herceptin continuing to bring it to a year). Why 12? How individualized is it? Or is this the *East Coast* protocol for my stage & HER2? Then I decide not to question it. I am not the expert & while I want to understand & know more many times I am ok with just doing what the MO assigned & hoping for the best.

I found it's worked best for me just to go with it. Sometimes I feel a bit like my head is in the sand but for me it is working to concentrate on other things, not questioning the treatment.

We deal with it however we can, huh? Your posts are extremely helpful, thanks!

VintageGal

Art123

I found the posts above re lumpectomy v masectomy interesting. My wife is her2 + so I dint think she will be doing lumpectomy. She is leaning towards bmx because I think she doesn't want to go thru this again. PS said she is not candidate for flap because she only has enough for one so it has to be implants. The articles I read re implants and rads and failure rate are not encouraging. I'm hoping she doesn't need rads. I did read that the linger you wait after finishing rads, the better outcome. Like, 6 months. That would mean she would have no boobs for a minimum of 10 months because surgery is likely in February. I'm not sure my wife understands that. I am glad that we have spoken a little more about and finally convinced her to speak to other women who have done this. I know being aware of the physical effects of this is important but I want her to be prepared mentally and emotionally as well. I'm a pretty good listener, but as a man I may not be as equipped to assist her with those issues as a woman who did this already could. All I can do is give her info, take care of her and tell her how beautiful she is and that I love her more each day. I am so in awe at how strong and upbeat she's been these past few months.

mercedes60

art, hi, personally, i found that AC#3 and 4 it really hit hard, my onco also said the chemo just weakens you with each treatment. I started taxol last week and had a treatment this week, however, my last AC really brought my red count down, so doing the enriched diet fir iron/protein to bring it up while doing the taxol. Its crazy so tired and out of breath, but hoping at least my count is up for next week treatment. Keep hydrated and i also bought these sport pops in the ice cream section, they are popsicles with electrolytes and yummy see if you canfind some it really helps. Take care

Art123

vintage,

My wife had the same protocol as you, 12 taxol/herceptin than AC 4 times

KBeee

Audra, Go to your children's events. my MO was clear to me...live your life. if someone is hacking next to you, move. I just always have hand cleaner wit me. I have been happiest when i have been at work or at the kids' school, or swim meets...because then for a few hours, i am focusing on that, and my brain does not even think about cancer.

LisaSP, thanks for the update...i do like knowing what to expect.

on the surgery front, I forgot 2 things......... 1. All of the pain meds cause constipation, so when you order your food in the hospital, order things like fruit, veggies, and oatmeal...and walk little bits when you can to get things "moving"...it will keep you more confortable! 2. I was given one of those mastectomy camis, but only wore it once because it was August, and it was 90something degrees. If anyone wants it, let me know and i will send it to you. It is a size medium. It has the little pockets for the drains, though I really didn't need them because I just wore sweatshirts inside out (cut the sleeves off on the ones I wore outside) and put the drains in the pockets.

kjsimpson

Great idea on the sweatshirts inside-out, Kbee!  Thanks!

I'll have drains and two "On-Q" pumps.  Not looking forward to it, but I think I will be able to tolerate it for a week.

LisaSP, congrats!!  My freedom day will be at the end of March or beginning of April (except for herceptin infusions thru August).  Looking forward to grabbing my life back with ghusto!!  :-)

audra67

KBEE-

that almost brought me to tears because I DIDN"T GO!!!  I feel awful today and just cried this morning with being so sick of feeling sick..I'm  not sure if it's the neulasta this time with body aches and headache or if it 's the chemo itself...hard to tell...last time I was low wbc  and had a few days of feeling exhausted and ill but then ok...this has been 3 days already and not seeming to improve at all!!!

Is it because it accumulates each time?  or the shot?? How do I know?

I feel like crap. Neck and headache then burning pains all over, body aches, just unreal

knightzoo

I thought you were all being quiet...turns out somehow email notifications are now going to spam.  Still feeling tired and achey by the end of the day, but each day is better.  Day 8 of AC#1 for me.  I'm getting treatment weary too - seems like so close but so far to the end.  Only 3 more times to step up to the chemo bar to get knocked on my arse again.

Thanks for all the lumpectomy vs mx stories.  It is so individual.  I kept asking my BS about BC occurence vs. recurrence in the other breast.  So many studies on recurrence, I understand that side.  But she told me the odds of another cancer in my clean breast, based on my age and the fact I've had one BC (assuming I'm BRCA neg) is 60%.  I love the quote about not crossing a bridge that isn't there - so true.  Yet I feel like my bridge is half built and I'm going to knock it down!  I agree with others that you will feel peace in your decision - I was afraid my MRI results were going to sway everyone to LX and I'd have to fight, so when BS was leaning MX, I felt so relieved.

A funny story on playing the cancer card - I finished grad school in August 2 weeks before dx, but am doing the official ceremonial "walk" next week - the college asked if they could feature me as a student who finished school with such "courage and determination".  the lady sounded disappointed when I said there was no overlap at all - she was like, but you were SICK right? I said no, I wasn't sick at all, no I didn't delay diagnosis because I was so busy.  There was NO overlap.  It was like my NEXT step was waiting for me - not a job, BC.  She really wanted that cancer angle, lol.  They may still use me as a nontrad with 4 kids who finished, we shall see!  I so empathize with all of you trying to study through all of this!

mamastewart - look up hopemob.com - they use twitter to raise money for people.  I follow them on twitter and see lots of great stories and help out there!

Hugs to all, nap time for me!

VintageGal1111

Art,

I had my A&C first not sure why the difference but glad I did cause it was rough & now it is behind me!

I have to get more info about my choices & it's not going to be an easy decision. I had a lumpectomy in Aug, not good margins, surgeon wanted to go back in but MO said Start Chemo ASAP then mastectomy. But yeah, just the one or BMX? Implant or not? More surgery, more pain & recovery time, or taking a chance on occurrence in good breast? I don't know..........

I hope you wife does ok through the holidays.

knightzoo

Audra, don't feel bad.  Some days are just not good days.  Take care of yourself, there will be other chances to do things with your kids.  This journey isn't easy, that is for sure. 

KBeee

Audra, If you are feeling that crappy then you need to stay home and take care of yourself!!!!!! One thing with kids....there are PLENTY of events to attend if yours like mine! Even if it is her last pep rally for the year, I am sure she is involved in other activities. I missed some cross country meets, had to reschedule parent teacher conferences, missed band performances........of course we want to attend all things, but at the same time, we put our kids first 99% of the time, and sometimes we need to put ourselves first....and they do understand...and it is a good thing for them to learn as well. I know my kids have learned that sometimes they have to put their needs second and they have learned empathy (not that they weren't empathetic before, but a whole new level)... and those are really, really important life lessons. I hope you are feeling better and can get plenty of rest this weekend. The Neupogen in round 3...and the Neulasta in round 4 may have brought my wbcs up, but they made me feel rotten. You also may be anemic. Maybe your MO can check.