Starting Chemo, November 2013 Group

BigT16

BanR- They do take my weight every time.  MO had to decrease the dose a couple of times due to my liver enzymes were elevated.  She has never increased back to the original dose.

Off to the BGC in a hour.  

I hope everyone has a great day!!!  The sky was bright at 6AM this morning.  Spring is just around the corner.

QuirkyGirl

BanR - my dose was tied to my weight with the exception of my 4th taxotere which they reduced to reduce SE.  I believe the rule of thumb on rads is to start four weeks after your last chemo.

inks

BanR - My RO said that they would like to start the rads 4-6 weeks from last chemo. However I still need to get my tissue expanders filled, so I can't start until 8 weeks post chemo (since the rads planning will take 2 weeks). But if you look at people who are doing neoadjuvant chemo they will do surgery 1 month from chemo and then will have to wait another month from surgery to start rads. So I keep telling myself that I am on their schedule and the 2 extra weeks are not significant. For ladies who had MX did your RO also tell you that we might get more fried? I am on a facebook group and it must be true because the ladies there are showing off their fried raw ampits. Not looking forward to more pain.

Back to the vitamin C, I could not stomach drinking water during chemo so I was drinking diluted juices (grape, cranberry, grapefruit). But after I read about the vit C thing I got worried and asked my MO if I was putting my chemo in jeopardy by drinking juice, but they said no. Now the vitC infusion is usually done after chemo and it has shown to make people feel better and lessen the side effects from chemo but there is no clear evidence that it would kill cancer.

BanR

Thanks for the replies ladies!

Regarding vitamin C..High Doses of vitamin C interferes with chemo ( basically it should help chemo, but, it is not in any treatment protocol as of now). Now with high doses, we mean Injectable Vitamin C. However more we drink orange or grape juice etc..it is not possible for anybody to reach even close to High Dose levels...High Dose implies Injecting Vit C directly into bloodstream.

hence Inks, dont worry about all those juices you consumed.

smrlvr

I asked MO about vitamins in foods and if they could be harmful.  He said,there is not enough of,them in food, but supplements are to be avoided.

Inks, my RO did say that women with rads have 30% higher chance of lymphedema. Didn't hear of more,severe burns.

Met with BS yesterday, and will be having my port removed in 2 weeks. I am happy about that.  When I get my rad treatment schedule I can think about going back to,work.  That is going to be very overwhelming for me and exhausting.  I also don't want to be greeted with the "you are strong" mantra.  We do what we have to do.  I don't feel like a stronger person.  I actually feel like I have been abused by life and I am a little depressed about it.  At the same time I am grateful to be alive.  

Audra, your hair looks good, you have more than I have.  I do have a little peach fuzz there, but no new hair which is disappointing.  

Bec, you deserve a pity rant.  I hope you are feeling better.

BigT, good luck in BGC today.

To all you ladies, I think of you and pray for you every day.  Be well.

Bec65

Hi ladies,

Thanks for letting me "share" yesterday.  I don't know that I'm feeling better today, but one foot in front of the other....

I have my first radiation today, three weeks after my last chemo.  I'm a little nervous, but I don't feel Xanax-worthy at this point.  (It will be in my purse, though.)  I was supposed to get my port out Monday, but I failed my blood work -- WBCs lower than they've ever been.  I can't see that a week could make a significant difference, but I'm getting my labs done again today, and I have another appointment to get my port out this coming Monday.  If it actually happens, I'll go right from the procedure across the parking lot to radiation.  BTW, I discovered incidentally on MyChart (our electronic medical record/communication site) that I actually have 6 weeks of rads.  When I left my RO appt., I had thought she said 5, so I'm glad for the extra week.  Kill, kill, kill....

I'm also picking up my lymphedema-prevention sleeve, etc. today after two months of insurance problems.

Re weight fluctuation and chemo, my weight went up on Taxol (okay, maybe it was the Christmas cookies), and they did adjust my dosage by 1 ml, believe it or not.  They explained that the dosage is based on body surface area, which is calculated using weight and height measurements taken at each infusion.  So, my extra 4 pounds got me one more milliliter of Taxol for my last two infusions.  

Re Vit. C, I did a major flip out yesterday after reading all the posts -- I've taken a 1000 mg supplement for years, and no one ever told me to stop.  My MO and her NP both reviewed my meds at each appt. which included all the supplements I take.  (There aren't THAT many -- a multivitamin, iron for anemia, calcium for osteopenia, B-6 for neuropathy, omega-3 and vit. C just because.)  I'm sort of half-way remembering the NP saying anything over a gram of vit. C wouldn't be advised, but I could be making that up.  What's done is done, and I'm not taking them anymore.  

Thanks again for letting me have my pity party.  DD is home (again) from college for the year with mental health issues.  She's not nearly as bad off as last year, I just think the school didn't want to deal another time with what might have been brewing.  So, I will mom-up and help her.  Honestly, I didn't realize until she came home how much I needed to be home alone during the day.  When I was first diagnosed, I just wanted to go away for 8 months and deal with myself, then come back, new and improved so to speak.  Obviously that wasn't possible, but I now realize that the 6 hours each day that I had to myself served that purpose and was really important.  Like I said, though, time to mom-up.

Well, time to eat and get zapped.  XOXO everyone.

audra67

Bec65- I need my 'alone time' too and get snippy when my husband hangs around too much...I think I am getting back to normal...during chemo I couldn't stand him to leave the room!  Poor guy!

I saw that MO/ob-gyn that is also doing integrative medicine at Baylor in Dallas last week and she said we cannot consume through food too much of a vitamin! So don't worry vitamin C girls! 

I am trying to consume 8-12 vegie servings a day and I found I cannot!  I don't even eat that much!  I am trying smoothies with vegies in am, salad lunch, vegie and salad at dinner...still not that many!  wow!  I am NOT a rabbit!  So I am taking some of her advise with a grain of salt...but I am taking the vitamins she recommended...

I worked out on the elliptical machine for 10 whole minutes today!  My poor legs felt like they were going to buckle...I have lost a LOT of muscle!  Supposed to warm up to 79 here tomorrow and Saturday and I cannot wait!  It's 60 today so I will try walking around the block as well...

My feet are still peely and raw - I am going to see my dermatologist next week for that...I am getting my nasolabial folds filled too...that might help me feel better since my face is showing so much with this bald hair!  My MO didn't know if I should wait to get a filler and the derm said OK, I text my PS friend to ask him...do any of you know?  botox??

Hoping you all do well with the radiation and KILL all / any cells in there that are bad!!!  Hope you are loaded up on the creams and all to prevent burns too! 

smrlvr- Yay on getting port out schedule!  Mine is still sore and a lump where it was almost...and I still am having swelling in my foob and armpit that the lymphedema lady works on 3/week...wanting it gone!

QuirkyGirl

Audra - I've been on a roasted carrots and onions kick.  Plus cauliflower soup.  Yum

QuirkyGirl

time for a happy photo!  Here is one of my favorite photos of my son from when he was just a wee person.  My sister made "beams" to sew on the outside of his snowsuit and he was a sunbeam on Halloween and all that winter.

Bec65

Quirky -- adorable!  And I LOVE roasted carrots!  They're like candy to me.  In fact, I love all vegetables roasted, so it must be how the sugars develop when they're cooked that way.  Another favorite -- roast broccoli until starting to brown, then toss in a mixture of balsamic vinegar and dijon mustard.  I could eat that everyday.

All systems are a go for getting my port out on Monday.  I don't know the numbers, but apparently my labs today looked good enough.  

Radiation was a breeze.  It took longer than it usually will because they did lots of scans which they do weekly.  The actually zapping took only about 10 minutes.  I had to hold my breath for 30 seconds at time for the simulation, but for the actual radiation the techs were very flexible and said if I could hold it comfortably for 15-20, they could work with that without compromising the "quality" of the zap.  The put a brass blanket on my chest for the chest zaps which they said keeps the radiation closer to the skin.  The zaps to my supraclav area did not use the brass and lasted longer.  It turns out I will have 5 weeks, not 6 -- scheduling made an error.  Also -- yay for my physiology -- they were able to "expand the tangent" to safely include my mammary nodes, so I really am getting the combo plate special.  One down, 24 to go.

I hope everyone has a nice evening!

Paulette23

huggs to all! still trying to regroup! standing only by faith at this moment.  seems like were all a bit overwhelmed.  At least we KNOW we're NOT alone inevitably all this!!!! As crappie as it all is we KNOW that at some point it will improve!!! We are just jumping the rough rapids and can SEE freedom!!!!!! Hand in hand we will Make it thru.

Paulette23

stand strong ladies!!! WE ARE OVERCOMERS! !!!!!!!!!!though at times we feel like worms......we Are stronger for enduring all this and WILL BE forces to be reckoned with!!! my love!

QuirkyGirl

Paulette baby!  How is your health?

Bec65

Oh, my goodness, Paulette...we've MISSED YOU!

Yogagal

Audra you look fantastic!

BanR - my weight fluctuates 15 pounds each 3 week cycle. Food and water only taste good to me the last week of the cycle so that is when I get super hydrated and eat real meals. About 10 days after chemo I am usually down 10-15 pounds from not eating and difficulty staying hydrated. 

Tomorrow is my last chemo, yay! Looking forward to my weight getting back to normal. 

Paulette23

love to all...when I get on computer will share! miss

Paulette23

yahooooooooo yogagirrl!  .......yes my weight also is wacko. up and down.....also pain pbms. actually been on pain control for YEARS! A REAL VET! Been round the block with most all types and pbms w docs over it. At least I have a constant pain MD  who KNOWS I dont abuse them.....but that doesn't stop pbms with other MRs and nurses who have prejudices against strong meds. Makes treatments hard since thats all they freak about about and IGNORE other pbms! a major source of my last hospital stay. They threw me into withdrawal which mad me real sick and didn't deal with WHY I was admitted!

Amazonwarrior

I have not posted for a couple of days due to a lack of energy and concentration. I am going through this cycle every time it seems: A few days before my treatment I struggle energy wise, then the steroids kick in and I feel energized like I'm on a caffein high, then the steroids wear off and the new SE start and I crash, then I suffer big time for a few days and I try to pull myself together for a while and the cycle continues! 

Audra, ellen: Great to see some growth coming! Is it coming back in patches or all over? Right now my brows and lashes are going, however today I noticed a small thick patch in the front of my scalp of tiny dark hair about 1-2 mm in length. Will that go or stay?! I still have two more Taxotere to go!

Pat: I totally get the exhaustion part. It seems that you may benefit from going to your cottage for a few days to gain some energy and relax.

Beck: It must feel great to be past the hell of chemo and moving along rads!

Quirky: A very cute photo of your son! We must cherish times and moments like this one.

Jab, phebe, wally: How are you doing with Taxotere? Are you managing pain?

Paulette: You have been suffering for a while! It must be difficult to deal with this ordeal and have other medical issues. Despite of all that, you seem like a very cheerful person getting your strength from your faith.

Your faith shines through!

Yogagal: Welcome back and a big YAY for your and 

EVERYONE else's LAST treatment and getting your ports out! 

We sure must celebrate the end of this! 

I can't wait for the virtual end of chemo PARTY!!!

Something to look forward to!

Inks, banR: I am thinking of doing the vitamin C infusions only after I am done with chemo to boost my immune system. 

Northwinds, lisa, Smrlvr, bigt: Thinking of you. Hang in there!

Phebe38

I read a lot of your posts. I was posting but somehow it got lost. I fell asleep while posting. Horay! I'm done with chemo but I have side effects. Three days after chemo  infusion I had a needle on my stomach to prevent the white cells going down. The last two  infusions I was supposed to get antibiotics. The last treatment I end up In The hospital with a white cells blood count of 0.7. The nurses came and check on me off and on. At 3 am my fever was 39,8 but my morning it was normal. Everyone had to wear mask to prevent me from getting any infection.  I was discharge the next day. So when I saw the oncologist he ask me if I want my dosages lowered. I said no. He said I will get a needle to prevent bone marrow getting infected or white cells going lower. So I got a needle yesterday. I took two Tylenol last night. I'm ok today abit aching bones on my knees but it's not bad. I have to watch my mouth it tend to get sore around it. So I gargle with salt and baking soda. For my face I use Aveeno eczema cream and it's working. No rash on my cheeks.the one that's bothering me is a rash in between my stomach and thighs, the greasy area. Any idea on how to help my self on that?

Phebe38

I just want to let all of you know that I really appreciate all of you. My mind is sorta foggy right now. I really appreciate this discussion board. I tried posting with my family but no response. I'm thankful for my immediate family. My husband and my older adult kids. I really believe we all understand what we're going through because we've been there. 

smrlvr

Quirky, your son is adorable.  I don't know how you have gone through this with a small child at home.  I give you a ton of credit.

Amazon, it is good to hear from you!  My eyebrows are really thin and I noticed today half of my lashes are missing.  

Phebe, I am sorry to hear you were in the hospital.  It is good your family is there for you.  I hope the next treatment is easier for you.

I have been reading many of you are posting that you are in a lot of pain.  I have not experienced a terrible amount of pain until this last taxol.  Usually it is just in my knees, but this time it is all over.  Are you having pain all over your bodies?  I just want to lay down all the time.

I had my radiation set up appointment today.  I should be starting in two or three weeks.   RO said no to vitamin c, vitamin e and fish oil supplements.  

I am thinking of all of you, Pat, Wally, inks, Jab, Bec, Ellen, Lisa, Northwinds, BigT, barn! sorry to anyone I left out.

We are expecting another snow storm this weekend.  Stay warm and have a restful weekend.

Paulette23

im praying for all you pain peeps....as a long term pain med patient I know how bad it gets. thats why I went in last time.insead of looking at it as a fifth vital sign so often you get blown off. I pray you have an understanding staff!! it is horrid when u get the "old school" mentality who makes you seem like you're "med seeking" ...this is real pain ladies. if you need to gow over their heads do it! you have the ability to ask for different nurses if they act like your "already had enough" stay ahead of the pain....dont wIat till its overpowering! !! it is your right for them to treat you. not everyone reacts the same and may need more or another med. hit the button and tell them!! dont hesitate!

Palameda

Hi Everyone! I'm finally getting my port out next week. It took the nurse navigator to email the surgeon for the office to finally call me and schedule it. Sheesh! Only 7 more rads to go, then aromatase. I'm a wimp, I admit it. I'm scared of the SE for five years, but the reduction of recurrence being 50%, there sure isn't much choice. And, I have to be grateful that there is a treatment.

There is light at the end of the tunnel. My pains have dissipated, and I'm only a little creaky and stiff now. so, those oF you still in the Tax pains, they will end. Jab, I'm so sorry you had to fight for them to give you the drugs you need. Grrrrrr.

Quirky, enjoy them young. I'll be spending the weekend parenting my adult son. My job is to stay calm and not get upset. Easier said than done,

Audra, my hair 'looks similar. I'm so impatient. I finally got a lymphedema screening, and Yay! I don't have any signs. I feel like that's amazing, since I seem to get every SE out there. Sorry I'm so negative. Paulette, you're on the same schedule as us: no fuzz?

QuirkyGirl

hope everyone's pain is better this evening.  Saw my RO today and ended up being tattooed and schedule for 6 weeks instead of 4.  Anyone else have a rad tattoo in their cleavage.

Thanks for your sweet comments about my boy.  He is now a great teenager. I don't know how anyone manages this with young children.

ellenkc

Monday will be my last radiation treatment -- and my last treatment of any kind (at least for this round of cancer). Because I am triple negative, I won't be taking hormones, for which I am grateful as I did not react well on them after my last bout of cancer. My own cancer journey has not been as long as many of the people on this board (initial concerning tests in August, cancer confirmed 9/5), but it followed and slightly overlapped with my husband's illness.

I finish treatments on March 3, 2014; my husband went into the hospital on May 3, 2013 and hospice from there. Combined, that's a long 10 months with medical issues primary in my life.

I have mixed feelings. I sure will be glad not to have to go for treatment each day -- just the occasional follow-up with RO and MO, including getting my port out on 3/11. At the same time, it feels really strange to stop taking action against cancer, especially since even with early stage triple-negative, I have about a 20% chance of recurrence within 3 to 5 years. That's a really scary number, particularly since my risk was in the single digits for each of my two rounds of cancer.

What I have been told so far is that because my tumor was early stage, they won't be ordering any body scans or other tests to see whether in fact the cancer is gone. I am not supposed to get a mammogram until late July/early August, and I know from previous experience not to freak out when it shows a big bright spot where the lumpectomy was done -- scar tissue shows up that way. It just really seems odd, after all these treatments, not to check whether they worked.

All we can do is wait and see. And I am horrible at waiting. As long as I am in action, I am much better off. The one saving grace is that I am back to work and have that to occupy my mind and to keep me interacting with people.

As I look back (and I will share this because I seem to be at the front of the line), one thing I would change in my approach would be to lower my expectations for recovery after the last chemo. Somehow I thought it would be like the three week cycles that I was on for infusions and that many of the effects would go away after 3 weeks. Not so! I am 2 months out now, and hard to tell what is chemo vs. radiation effects, but I feel like most of the chemo effects are gone, though my MO says it can be several months to a year to completely recover. And I have had an incredibly easy time with radiation, easier than my last time around. I am tired on occasion and very slightly sore due to radiation, but most of the way back to normal.

So, onward to a new phase, but with a much more muted celebration than I expected.

Ellen 

Paulette23

pat.....barely fuzz yet...what is I'd white....virtually nothing to even photo. still loosing nails and brows/lashes. Finally broke down last nite to hubby. He just doesn't get it. Had a visit w a neuro guy who was an idiot. Couldnt even tell what images were brain contrast and not though he seated they are. I know enough to read basic mris. referred me to cognitive assistance psych. between the fiasco where the hospitalist threw me into withdrawal a few weeks ago while inpatient. ...called his own pain guy in to "change" my meds of 12 years w/o calling my pain specialist. ...failing to clue my MO into what was happening. ...im lost. my MO  was soooooo confused that he made me appear nutty. i have no appointment s for any follow up....no port care....no explanation. ..or ANYTHING.  they said earliest appt. is late march. ive had falling cbc prior and during hosp visit yet they ignored it. had weekly counts prior......NOTHING since.....feel sicker ever day. neuropathy and other pain but have no one to call. with my complex history and strong meds it freaks them out. my primary doc as I I need some type of doc that deals in zebras. especially since my kids and now grandkids having Sam autoimmune pbms.....so add bc to it Allergy just puts me in " no one wants to touch me" its disheartening.  aand u wonder why I have PTSD! I'VE run this cycle since 10 years old.....if I didnt see my kids and grandkids going thru the same I would think I AM nuts....but how do you MAKE y oiur body  have he's attacks...STROKES....ATOPHY......and damage that is documented. ...they just dont want to say "they dont know!  it kills their dr GOD  mmentality that they are doctors and Know EVERYTHING!  At point TOO much is ignored Damage and they get overwhelmed.  it just mucks up getting treatment for dealing w BC!! They get so bugged out that so such iS wrong and my flipping pain meds. it makes it difficult to get proper. treatment. .

...phone freaking sorry for the rant....I just dont have a CLUE....what any plan is next. no followup. ...no appts. ...nothing...

Paulette23

hurry Ellen! sorry I haven't posted to more of yall.....since hospitalization ive not come hardly up for air....thats what happens when then drop you into pain med Withdrawal and dont contact your doc just because they dont understand the what's and whys when you have been carefully managed for odd conditions. they assume you are a junkie.....even though there are CLEAR and documented reasons for necessity! my one doc said.....goodness with Just ONE..OF YOUR physical things it would warrant your dose!!!!! add them all up and they wonder how ive made it! but then you get stuck with the "new system".....you dont get your doc....you get a hospitalist who doesn't have enough education to be a real doc....and they refuse to call your docs! if your complicated....well enough said....thats whAt almost killed me ttwice now! 74 day miracle in 2005...ill have to tell u sometime. ....then the visit a few weeks ago that I RAN AS fast as my RN HUBBY  could roll me out before it happened again and someone else rolled me on a gurney. Sorry for the negative. ....as I try to be upbeat despite life...cause after over coming sooooo much the odds are FANTASTIC  for most all to be on the GREATEST SIDE OF VICTORIES!  II Seem to be what my husband calls such a patient......a s$@t magnet!!!! I suppose its partly cause I know God will help me show others victory despite the odds and my inborn tenacity! whatever the reason....it does getl to me sometimes. ....I am just human. BUT I know this too WILL pass!  Hang on to your VICTORIES they will hold you in the dark times!

Paulette23

PROMISES ON THINGS TO COME! We will all bloom and grow where planted! have a floral day! Staying rooted in the beautiful things of life!

jab

Paulette,

Beautiful pictures!! When reading your posts I could feel your frustration and I DO understand it. Autoimmune conditions are so hard to diagnose and to treat, and when there is pain associated with them, every doctor seems to think they know better than the one who is treating you. Is there any way you can get back to your primary care doctor, Rheumatologist, pain specialist, MO and get your situation back on track? Your MO should be talking with your pain specialist already. Your a strong girl Paulette - You are important and they should be taking better care of you.

Paulette23

jab....everones lost....but that has ALWAYS been my story! I really wouldn't give a flip anymore .... apparently its genetic.... if IT  was JUST ME..ID throw away he towel in but now my granbabies!!  REALLY. .....ITS GENIC....duh.....me...my kids and theirs! none of the docs communicate. ....its so complex after 40 years they just flip and focus on my ungodly pain meds. at least now I can get them! been followed long enough for my prim and pain mange doc to know I am NOT  an abuser or seeker but when a new doc comes in thats all they see! not how my body reacts diff than others and I have strange and diff responses than normal!  all they see is "oxytocin" and the dose. Gimminie...they cant even knock me out for surgery! if I go in to hospital for pain I get wild unhealthy responses! like last time the doc dropped my dose sooooo low I was in withdrawal!  aalmost killed me! instead of calling a neuro for a brain cyst they sent in occupation therapist s. dieticians. ..therapy.....and a shrink! yet they see all the damage but are afraid of lawsuits!  so they TOTALLY Ignore why I was admitted and cant wait to run! our medical system sucks and is worsening! so know u know why I have to trust my faith and attempt to look at the happier things! 40 years of ignorance has caused me tremendous P TSD...SO WHEN I  do go anywhere ...anymore....with my history I want to RUN!! It makes dealing with new issues like the BC virtually impossible to get legitimate care! between DR GOD SYNDROME!  (which I could write a book!) and preconceived this was over pain meds... add the whacked history....im screwed! so I stand back and trust God!!!