Starting Chemo March 2015

ksusan

Yay for hair! I know brows and lashes grow more slowly. Maybe they're falling out from the AC? I had hair growing out after 3 Cytoxan/Taxotere treatments.

molly1976

It is crazy how after all this time I still have the instinct of wrapping my head in a towel after the shower or grabbing for a hair tie when I'm going out for a walk, etc. The whole concept of having hair is starting to seem weird to me. On the bright side, some guy just stopped his SUV in a parking lot and rolled down the window to tell me, "not everybody can pull off that hairstyle. You look hot." THANKS, stranger.

Trvler

Awesome, Molly! I do that with the towel, too!

eheinrich

Hi friends,

Hope everyone is doing well. How fun, Molly! That must've been a nice boost. I generally feel like Uncle Fester....

Been up down up down lately. Feeling totally optimistic and excited for what's next, productive then like an overwhelmed incapable ugly poop head. Trying really hard to stay w/ the ups. MO didn't have me do the Nuepagen (sp?) shots this time so of course I've had a cold w sore throat for almost a week - probably part of why I feel discouraged sometimes. Also because I'm done w/ chemo I guess I feel like I should be "all better" but there are still side effects to deal with...

Enough of that!

I also got some hair growth after 3 CT cycles, slooooooooow growing. Kept my brows and ~1/2 of my lashes - I have a lot of lashes so aside from Alan no one could tell. Saw San Andreas yesterday in 3D. I had actually never seen a movie in 3D, super cool. The story was a little trite, but the special effects were great and the movie while starring The Rock (wtf kinda name is that? It starts with an article for goodness sake) the 2 female leads were very strong capable women even if they did have a lot of cleavage and the scientists weren't dopey nerds but heroes of sorts. The other featured males were either complete jerks or a little weak. Totally recommend it. Off to do more science - sloow going, it's nice to do some thinky work but my brain ain't what it used to be.

Happy weekend everyone. Katy give that kitty a belly rub for me and Jack a sweet little kiss on his nose, please.

ksusan

The Rock is his WWF name. He's the only man I have permission to sleep with outside my marriage, should I have the opportunity. Sigourney Weaver is the only woman. My partner can go for a young Eric Clapton, if she can get the time machine to work.

molly1976

ksusan, you should go see Fast & Furious 7. The Rock is so charming in it!

ksusan

Thanks!

Jackbirdie

Eileen- sorry about ups and down. Can be do debilitating. I loved your movie review

E. Would love to catch a movie with you sometime and meet Theresa for hallucinations after. Har. Belly rub and head kisses. Consider them done.

On the hair front I have stubble growing back in random places. Eye brows and brows at about 50%. However I have heard anecdotally heard that eyebrows and lashes fall out much later and you can be sporting significant hair growth after txt isdone then wake up and discover no lashes one day. WTF?

I think having no lashes is worse than no hair. Just me.

ksusan

Lashes and brows grow more slowly, so they sometimes don't fall until leter in treatment, and grow in more slowly as well.

DavisD

Just wanted to check in and say hi to everyone. I've really been slug like since my 4th round and #5 is next Tues and I don't feel much better. Besides the fatigue my eyes just tear constantly. I go back to the optho next week and I'm sure he will decide the steroid drops didn't do the trick. Will do some procedure in the office to get them draining properly.

I miss you all but just haven't had the energy to keep up. I feel like I've lost so much of what was me...I think I feel bad because I'm used to giving everything 110% and I don't settle for mediocre usually...now I'm super grateful to make it through my day without falling asleep driving to work or at my computer!

I just looked at this post and it mostly doesn't make sense but I need to just jump in so bare with me.

eheinrich

Diane, be super careful with the driving. I was evaluated for narcolepsy about 4 years ago because I would fall asleep driving. (they said I was borderline, but drugs fixed it - hasn't happened in years). It's super scary & super dangerous.

SpecialK

jackbirdie - more is not always better - particularly when it comes to chemo.  I am unsure why your MO is giving you 6 TC for a grade 2, 1cm, node negative situation, other than your firmly high Oncotype Dx score - I apologize, but it seems to me to be overkill.  Particularly in light of your pain, which I would think is taxane induced.  To do so because there is an unfinished trial going on is questionable - because that trial data is not in yet to even know if it is an effective choice.  Just sayin'  I don't recall whether there was discussion in your case about the use of AC-T and your MO did not use it due to cardiac co-morbidities - could that be the case? Could it be be that your MO is wanting you to have extra TC because of the inability to use Adriamycin for you?

Jackbirdie

Diane- since the first time I took the bite out of the shit sandwich, I never felt sleepy when driving. Yesterday was TC #5. But today I almost went off the road. I stopped several times. I was rushing to get my Neulasta shot, then PT. I was late,.

The only good news is she up gave me a shorter treatment today.

I do feel much better today. I can account for this only as follows.

-The steroids.

-The antibiotic is leaving my system (the dreaded Levaquin- which worked on the pneumonia after the zpac failed, but has numerous complaints against it including spontaneous muscle tears, joint issues/pain, especially Achilles, and sudden deaths) anyway, I felt forced into it because I was still so sick and wanted to get the chemo over with.

- I'm finally 4 weeks from last chemo so the body had a bit of rest.

- I did a 3rd very intensive medical marijuana and coconut oil topical treatment yesterday afternoon using 3 times the previous amounts. I did this after soaking in a tub with bath salts and almond oil. Then stretched and rubbed my quads for many minutes. My PT has showed me I have very little core strength left. I wasn't in good shape to begin with, with the surgery plus major lung issue last year. So now, not walking or doing anything for almost another month has taken me to a new core strength low. Which means the knees aren't being supported as well, because the giant quads aren't doing their job. Or the pec muscles, because we are still working on scar tissue, then too sore to work on strength. It been a viscious, viscious, cycle, but I'm still trying.

Special- I have very much in agreement with my MO on most things. I felt lucky that in our backwater of a medical community of 25,000 there was a relatively young and open-minded MO to choose from, the other being a very hard to understand (English second language) doc who doesn't like questions and doesn't "partner" at ALL with her patents. He felt strongly ( he let me make final decision of course ) about no A because of what he perceived as a young age, and didn't want to risk heart defects, especially since I had an estrogen + cancer that in my case Oncotypedx predicted would do twice the job of chemo. This MO stated nobody knows for sure the benefit, if any, of doing 6 TC. He said he's rather me skip the A and do extra TC and hope they find more drugs in the meantime. After watching Pink Ribbon, Inc., I have very little faith they will. But I asked him if he would do it, he said absolutely. If I was tolerating it. The first 3 were relatively easy, the 4th was twice or 3 times as hard. I almost quit. But ,yesterday, I tried again.

Who knows if someday I find out I did myself lifelong harm? If the first 3 had been like 4, I would have given up. But at first 3 tx, I had an easy time if it. I felt so guilty that others were having it so much worse. I'm now questioning a lot more. My tumor was 1.6, if it matters, there was just no place to put it that way in the profile that I saw. either 1 cm or two.

I will make the decision when I meet with him next, before #6 takes place. I need to better understand, if I am tolerating it. I find the question hard to answer. I need to believe in something. I'm not even sure I'm getting an insurance policy. He treats most if his ER + patients in my similar situation the same, six if they can take it. He stated his belief that the only time you can "cure" cancer is at my stage. I think he believes they wouldn't be doing trials if they didn't have a strong postulate that it would work. Yet we know that many clinical trials fail.

I feel I should do all I can. I don't want to second guess myself later and live with the guilt that Indidntbfight hard enough.

I no longer use the term "cancer cured" I don't believe it, the medical community can't prove it, and they are grasping at staws. I know the ht will be much more helpful to me than chemo, so I realize statistically, that the one week postponement probably did no harm, and that last chemo #6 would probably be less than 1% benefit.

My big concern is how I will beat myself up if I get a recurrence. There is no safety in these numbers. You read stories of people who do the minimum surgery and nothing else and they are "cured". Others do everything recommended, and relapse. It isn't fair and it doesn't make sense. But for some reason I couldn't let myself do much less than the maximum. But as I said, I question it.

Jackbirdie

by the way, there was something not quite right about my echo, but it wasn't serious, and he said that wasn't that what gave him pause. I read the echo report myself and didn't see anything major. But because I was having so much pain with my then poor surgery recovery that there were many areas they couldn't get a good view on. The Echo tech and reading doctor recommended a second test. So they couldn't rule certain things out.
Nobody wanted to do another one, and he said it was more about my age and general state of my health. And the availability of HT for me. But at some level, he did seem to trade off 4 AC+T for 6 TC instead. It was a judgement call, as so much of this seems to be. Who knows?

SpecialK

jackbirdie - my concern is exactly what you state - your MO doesn't know if doing the extra TC provides benefit, at the risk of doing potentially irreversible harm.  What are your MO's parameters for the tipping point?  Keep in mind that the approved regimen is 4 Taxotere/Cytoxan - there is no NCCN vetted  regimen of 6 for this combination - the only regimen of 6 is Taxotere/Carboplatin, so if you do 5 Taxotere/Cytoxan you have already done the maximum and exceeded it - I see no reason for you to feel like you may have not done enough.  I also don't think there is any known equation of this many TC equals this many AC, etc. - these regimens are different for a reason - it is an apples and oranges comparison.  Also, I don't believe that you can "cure" breast cancer at any stage, sad to say. 

Italychick

Katy, I have seen a lot of women post that they are on 6 rounds of TC. But if I had chosen that, my MO was only going to do 4 because she said that is the only regimen that has gone through complete trials. But if insurance approves it, I can't believe they will approve a protocol that is not listed anywhere.

It seems like we are all on different regimens with no rhyme or reason. My MO was clear that Carboplatin and Herceptin were the way to go for me with negative receptors. But she was also okay if I had chosen 4 TC, or 6 Taxol with Herceptin only,which I haven't seen anybody doing.

It seems like with Taxotere, it affects feet, legs and hands. Adriamycin can affect the heart. But I think the majority of Adriamycin horror stories are before they started limiting the lifetime amount women get.

Today my fingertips have weird little tiny white bumps all under the surface of the skin, and my lower legs are still tingling, 9 days after treatment. Plus I read something about chemo affecting capillaries which no doctor has mentioned to me ever.

eheinrich

My original MO (who I really didn't care for) was insistent on 6 CT, my other 2 opinions were set on 4. Granted my Oncotype score was lower than yours Katy, but my tumor was bigger & 2a. One of the MOs said that years ago standard of care was 6 doses and a lot of docs stick by that because it's what they have always done. Obviously you & your doc know more about your case, just popping in w/ my experience.

Italychick

By the way, my MO told me to immediately start taking 100 mg of B6 and 600 mg of ALA (alpha lipoic acid). I told her I hadn't been taking B6 because data wasn't sure on whether it interfered with chemo. She said there is no truth in that, to take the B6 and I should have taken it all along. She is a completely trials based MO, for what that is worth, and does not deviate outside of proven treatment plans. She even talked to UCLA about my case

ksusan

Funny. My MO took me off alpha lipoic and B for my chemo!

jumbledbamboo

Recovering from chemo4! Stage II B. I am triple positive. Mastectomy is done. Just thought I would drop in. I dont understand everything I have in front of me! But that is what I do know

Italychick

Ksusan, that's what I thought. I was pretty sure those substances were both on the no list!

Jackbirdie

Special- thank you. It is nice to have your opinion, which I have always respected so much.

I am awash in insecurity right now. I am very unfamiliar with this emotion. A better way to describe me would be "often wrong but never in doubt".

I guess the major and focal question for me at the last meeting I have with him before the scheduled #6, is, what is the/his definition of "tolerating"?

My labs have been mostly been good to very good. My liver has been stellar, especially in light of a year's worth of unexplained elevated enzymes, which I finally got under control by drastically evaluating and eliminating all non essential drugs (made me wonder why I was taking any "non-essential " drugs). My med load and drinking the juice of a lemon in hot water as a cleanse..believe me, I am no health nut, worked in both my liver enzymes and lowered the high uric acid.. Since I took the medications out one at a time, I was able to see it. So strictly speaking, clinically, I have tolerated it. Yes I've had pain bad enough to keep me in bed, but they gave me pain meds for it. I had to get my own MM though, haha.

I don't know. I guess I'll just have to see how the next couple of weeks go. Since I had no nausea or vomiting, which I had feared the most - just rashes, pneumonia, fatigue, and pain, and neuropathy, I thought I was getting off pretty well.

wpmoon

This probably doesn't help much as far as the type and amount of chemo given, but it's what my MO sent me when I asked why he thought chemo was necessary for my situation. I was trying to talk my way out of chemo. Clearly that didn't work, ha.

Katy - Tutti is adorable. Give her some love for me. And Jack, too!

wpmoon

Katy - just found this: http://www.nccn.org/patients/guidelines/stage_i_ii...

All you can do is what you think is best for you. If you think you would regret not finishing your scheduled 6, then power through it and do it. Whenever I complain about an SE or cry from frustration over the situation, my mom reminds me that I can quit at any time. But I just can't. I know that I'd blame myself if I had a recurrence and I didn't finish chemo. If I have recurrence in spite of all my treatment, well then I'll deal with that if/when it happens and chalk it up to shit luck.

I have my radiation consultation on Monday ... almost hoping that they'll tell me it's not necessary, but not getting my hopes up.

Italychick

wpmoon, great posts. I wonder why so many women say they are getting six rounds of TC now? I see it all over this site. Doesn't seem to be standard of care.

Jackbirdie

Theresa, like someone above mentioned, maybe it's just an old protocol and not a new. Here I was thinking my MO is on the cutting edge, open minded. Perhaps it's the opposite. Insurance gave no grief over it.

Although I feel better physically today, I've never been more distressed, never more unsure

I should be happy I'm almost done. I already had my surgery, there will be no rads, there will be some form of HT. I have a new kitty.

Someone please tell me it just doesn't matter at this point and to stop obsessing.

wpmoon

Katy - it doesn't matter and stop obsessing! I know how hard that is, though. Lots of love and hugs to you!

SueH58

WP - did you have a lumpectomy or mastectomy? If a lump, you'll most likely need rads. If a mast, i would guess not because you had no lymph node involvement to treat.

wpmoon

Sue, I had a lumpectomy, so I'm sure rads is on my schedule. It's just wishful thinking to not have to do it but again, if I didn't, and it came back, I'd probably blame myself, so... best to just do it all, right?

shaz101

hi everyone. I'm so sorry I haven't been around...again. I've missed you all. But with migraines and appointments I haven't been able to. I haven't read post yet, I just wanted to check in. I hope you are all OK.

I've seen to radiologist and I'm having 6 weeks of treatment. They rang me yesterday because they want to try a new technique. Apparently I'm a good candidate. It requires holding my breath for long period of time (they will give me some exercises when I go in for the simulation) apparently it will move my heart out of the way so it won't get zapped! I'm all for that!

I'll try and catch up on some posts. Xxx