Cytoxan and Taxotere ?

joanne_elizabeth

Lisa - hope you are dong well, next week is the day again!
How did your recon consults go?

Cynthia, your reaction to taxotere was only the last time? That stuff scares me ! Your hair started to grow back before your treatments were done? That is cool! I keep wondering how long I will look like this - just weird thin strands around the perimeter, nothing on top!

JayDub

Hi Lisa-

Before I started chemo the nurse sat me down and we walked through all the potential side effects. Blocked tear ducts was one of them, and a trip to the eye doctor would be required to unblock it.

As my hair started to really thin out about 2 weeks after my first treatment I had my head shaved. Since then hair has started to grow back, but only grey is coming in. I was originally a blonde with grey in spots, so it looks like the grey rules for now.

Jessie

Cynthia1962

Joanne - in hindsight, I'd been having a reaction during each Taxotere tx, but I didn't know that's what it was. The first two times, it was quick and hard to describe, and the 3rd time I just figured it was more of the same so I still didn't mention it. I SHOULD have said something because my nurse told me that I shouldn't feel any different during the infusion and, obviously, I did, but I expected a reaction to be a bit more intense. And, another nurse had told me that she had never seen a reaction to the Taxotere, so I wasn't expecting to have one. If I hadn't finally said something, I wouldn't have been given additional premeds and my reaction would have been much worse than it was. Talk about dodging a bullet! So, when in doubt, say something. lol

As for my hair, it started to grow back on my head after my 3rd AC. I never lost all my hair on my head. Even after shaving it, I still had a horseshoe like ring of stubbles on the top. It started to grow first, then eventually the sides started growing again.

Cynthia

Anonymous

Cynthia

what kind of reactions did you have with the first couple tx? Where they occuring during the infusement, or after. So far my first 2 tx where done very slowly in case of a reaction. I have had violent reactions before from meds, stopping my heart. However shortly before I was Dx with BC I had a pacemaker implanted so this woudl never happen again. I have been getting a rash on my chest, back and shoulders....very bad on my head. It itches constantly. I have changed my onc, and will be seeing my new one on Monday. I wonder if there is anything adverse SE that I shoudl tell him about before I have tx #3 next week.

Cynthia1962

Jean,

I was experiencing a tight feeling in my chest, and a funny feeling in my head like an adrenaline rush or milder. It's really hard to explain. None of my se's after the tx seemed to be allergy related. I've been having heart arrhythmias, but I had those before tx and the increase seems due to the neupogen rather than chemo.

Sorry to hear about your rash. I'm glad you'll be seeing your new onc soon. Have your tried benedryl to see if it helps?

Cynthia

Anonymous

Cynthia
No I haven't tried benedryl...does it need a RX or is it OTC?
DId you also have strange feelings in your breast or just chest area.

Cynthia1962

Benedryl is OTC - there's generic, too. It's in the section for allergy meds. Only had the sensation in my chest.

Cynthia

sdstarfish

Hi, Girls:
The recon appt. was horrendous. I felt like I was in a really bad episode of "Scrubs". I waited a whole hour as the residents hung out in the hall and flirted w/each other. Nice. Then the resident who supposedly 'might do my surgery' knew nothing about breast cancer. I had to explain my tumor to him.
I really wanted immediate recon, but I think I need to take my time and find someone. So my breast surg. is doing the bilateral mast. on 9/19. I really trust her, and she says the sooner the better. I didn't come this far through chemo to delay my mast and increase my risk. Still, I hate the idea of waking up flat...and then being like that for weeks...
Thanks about the eyes, Jessie. I didn't know about that s/e before.

joanne_elizabeth

Lisa - So sorry to hear about the problems with reconstruction. I have been flat for a couple months now on one side. It is somewhat of a shock after surgery so I looked about 2 days post-op. You can buy camisoles with pockets for drains and pockets for temporary prostheses. I still use the prosthesis, just haven't gotten around to getting a real one yet. I would definitely ditch the residents as well. You need someone you are comfortable with who knows what the heck they are doing. Good luck with it.
Cynthia - that is so strange about your hair. I think my little rim of hair is growing in the back while my dome is bald. I might have to get my husband to trim it. Who knows what will be left after the next chemo.
Ah, this is not easy to get through !

Joanne

joanne_elizabeth

Lisa and others,
Would you mind sharing which herbs/supplements you are taking and whether or not you are ER+? Some seem to think this impacts whether or not you should eat soy and flaxseed, others disagree.
I have backed off most of mine til chemo is done, since I read conflicting info about antioxidants during chemo.
Thanks,
Joanne

Cynthia1962

Hi Joanne,

I am ER+ and I've chosen to avoid soy until more is known about exactly how it works in the body. I haven't looked at the research about flaxseed, yet.

My onc felt it was okay to take supplements during chemo, but to avoid antioxidants 2 days before and 2 days after each tx.

Here's my list:

L-Lysine 500mg 2x daily
Milk Thistle 300 mg 2x daily
Floradix Iron + Herb Tablets 2 - 3 tablets daily
ToCoQ10 200mg 1 - 2 daily *
Selenium 200mcg 1x daily *
Maitake D fraction 10-20 drops daily chemo wk
Multiple Vitamin
Magnesium as needed
Liquid Calcium (when I remember)
Vit D-3 2000IU daily
Green Tea Extract Capsules 300mg 2-3 caps daily *
L-Glutamine 20g daily (during chemo wk)
Vit B-6 100mg 2x daily
Omega-3 EPA & DHA *
Probiotics as needed

*antioxidants

I think that's it. I'm better some days than others at taking them all.

Cynthia

joanne_elizabeth

Cynthia,
Thanks so much for the list. I take some of the same supplements. Is there a particular reason you take so much Vit D? Have you come up with your own list or have you consulted with an herbalist/nutrionalist? I am considering consulting with one just because I read so much conflicting information.

Joanne

Cynthia1962

Joanne,

I read this recently: "A recent review of the science reported that the tolerable upper intake level for oral vitamin D3 should be increased five-fold, from the current tolerable upper intake level (UL) in Europe and the US of 2000 International Units (IU), equivalent to 50 micrograms per day, to 10,000 IU (250 micrograms per day)." Here is a link to info about higher levels of vit D blood levels being associated with lower risk of bc. http://www.nutraingredients-usa.com/news/ng.asp?n=73952&m=1NIU206&c=mkiudoblzxrxzdl

I take at least 2000IU and sometimes more. It also helps to prevent bone loss as well, I believe.

I've been seeing an herbalist for years so I consulted with her prior to chemo, but I've been adding and subtracting from my list as I learn more. I recently read about the benefits of astragalus to help the body recover after chemo so I plan to add that soon. I also plan to take a supplement called DIM when I start the Tamoxifen.

I agree about there being so much conflicting info. Prior to my dx, I did everything "right" as far as preventing bc so I take most research now with a huge grain of salt. Even my herbalist and I don't agree on some issues, but I still plan to consult with her at times.

What supplements do you take that aren't on my list? I'm always open to learning more.

Cynthia

sdstarfish

Hi, Joanne:
I stay away from soy, but I love flaxseed. Although they are both plant-derived, I have read studies that they have two completely different effects on estrogen receptors. Soy increases hormone production, while flax seed fakes the receptors out by taking up space. I eat two tbsp of ground flax every day on my cereal.

sdstarfish

I take everything Cynthia takes except L-Lysine, Selenium, multi-vitamin, Vit. D,L-Glutamine and Vit B-6. I also take Vitamin E, Vit. C, folic acid (Green veggies taste like metal to me during chemo week, so I eat none), melatonin (tumor regression and better sleep), astragalus (helps blood counts, especially red. Found out that it worked - the hard way - when I stopped taking it and my counts dropped!), IP6 (makes it almost impossible for growing cancer cells to keep growing because it disables their cell wall), quercetin (inhibits BC), Potassium/Magnesium combo (to digest calcium usefully), and I sprinkle turmeric on my salad every day (inhibits BC).

BTW, Cynthia: I was really glad to hear that your eyebrows didn't fall out. They are very nice

Cynthia1962

Thanks, Lisa! Congratulations on having your last chemo tomorrow!!! I'll be thinking of you.

Cynthia

joanne_elizabeth

Thanks for the lists. I haven't heard of IP6 but will have to research that one.
That is funny what you said about green veggies. I also cannot stand them after chemo. I used to eat green salads most days and cannot stand the thought of them for awhile post-chemo.
best of luck today. Let us know how you do.

Joanne

sdstarfish

Last chemo went ok. Not looking forward to the bad days this week...but there is something very comforting in knowing that this will be the last one. Docs say they won't give me the Nupagen shots unless I need it when they check my blood count next week.

Interesting thing I've noticed about the effects of acupuncture on my s/e's. The college I go to for treatment was closed last week and this week. Well it didn't occur to me at the time, but now I realize that my fatigue level has been much higher over the past week...and I have had heartburn and moderate headaches (not as bad as Nuelasta headaches, though) every day. So the acupuncture must have been working! Or else it's just the cumulative chemo effects...who knows?
Next step...bilateral on 9/19.

Cynthia1962

Lisa - Yippee for being done!!! I hope the bad days go by fast. I definitely noticed more fatigue this time. It started sooner and has lasted longer. And, the heartburn was horrid this time. The pepcid didn't even touch it so I added a handful of Tums which did the trick. lol I get my labs done tomorrow, so I expect I'll be having the neupogen shots the rest of the week. As much as that'll suck, I look forward to being able to eat salad and fresh fruit again.

Hang in there and just keep reminding yourself that you're done, done, done.

Cynthia

joanne_elizabeth

Lisa - so glad to hear you are done. I am right behind you tomorrow. Then a week of dues paying and we should be done, hopefully forever with chemo! Hope you aren't feeling too bad.

Joanne

sdstarfish

Just thought I'd share my misery...Been up since 3 a.m. with gigantic ulcer discomfort. It's now almost 5 a.m.
6 more days, and I should feel alot better...
What was that song from "Finding Nemo"?

"Just keep swimmin', Just keep swimmin', Just keep swimmin', swimmin', swimmin', swimmin...."

Anonymous

Yesterday was fantasitc day, I saw my new oncologist, and the first words out of his mouth were, “Oh, no, not another one of Dr ----- patients”. He was very cery concerned when I told him a little of what had transpired with her. He immediating phoned the hospital and discovered she had not yet order Friday's chemo! He told them he was sending over tx orders and to change my case to him…PERMANETLY. Next, he called my surgeon and asked how soon he could schedule surgery…it will be in 4 weeks. He then contacted my PS. All of this while I was sitting in front of him.

He was shocked that I had been given chemo before surgery. He said they should have gone in and removed the 2 malignant lumphnodes immediately then chemo. He was upset I had been scheduled for 6 treatments as they generally only do TWO. As I was to have #3 this Friday, and surgery is 3-4 weeks away, he decided I should go ahead with this week’s chemo so the cancer will not have a chance to grow while I'm waiting for surgery.

He then reviewed my Braca test and explained that I have a very rare form of the genetic marker….ONLY 14 families in the entire world! (great!) The lab recommended testing other famly members, but both my mom and GM are dead and I have no sisters. However my mother has an identical twin sister, who has a daughter. I should inform her.

My onc explained my BC and said it is not the type that spreads into the other breast but travels to the liver and bones, so he wants me to have Radiation, which means …relocate the pacemaker. (My PM Dr wanted to perform this after my mast/recon and right before my RADS...I don't think so and neither did my onc, who said to discuse this with my PS on Friday as he could move it during surgery thereby saving me the extra pain assoicated with more surgery.

Following this appointment I saw my PM Dr, and got the “bad” news. Apparently my pacemaker has gone off OVER 160 TIMES in the last 80 days! She told me not to worry about it...she has to be kiding! I wonder if it was the chemo? Nevertheless, thanks to God and the PM, my life was saved.

sdstarfish

Oh, Jean. I'm so sorry. My ulcer issues seem so trivial now in light of your nightmare. I am glad that you were switched to the new onc, though. Think positive. I know that's not such an easy thing to do. But just lean on the people around you for strength right now. OK?

joanne_elizabeth

Jean,
That sounds like quite the nightmare that you have been through. Thank goodness you ditched the first doc. I am so glad you have an oncologist now that it seems you can trust. Are you saying you have 2 positive lymph nodes that they need to remove or 2 tumors? I have heard sometimes they do chemo prior to tumor removal and sometimes after.

Lisa, So sorry to hear about your ulcer keeping you up all night. The good part is in a few days if all goes well you will be starting to feel like your old self. I hope tonight you get some sleep !

Anonymous

Joanne
Hi I just came from my surgeon's office. He explained that the PET/CT and Bone scan showed no spread of cancer iexcept in 2 nodes and he will removed them during the Mast. He will biopsy them during surgery and removed 12-24. If they are clean, no cancer, he would recommend no radation. He thinks the radiation causes a lot of trouble with reconstruction and thinks as long as all cance ris removed, all I should need is the addional chemo. (Maybe not that) However my new onc said he will change my chemo from TC, what I am doing now, to TAC after my mast. I hope they all decided on no rads. I wanted the reconstruction at the same time as the mast so I don't have ot have more surgery.

joanne_elizabeth

Hi Jean,
That is interesting that they did PET/CT scans. My surgeon refused, saying they were not specific enough. Makes you wonder why there are so many opinions.
Do you know why he is switching from TAC to TC?
I hope as well not to do radiation, sounds like about as much fun as chemo !

Joanne

Anonymous

Joanne

My new Onc said I should never have had the TC. Once BC was DX I should have had the mast following by TAC. I had an incisional biopsy, (Lumpectomy) but no nodes were removed. My previous Onc ordered a PET/CT, and Bone scan, then 3 days later, started me on the first of what was to have been 3 tx of TC. She quickly changed that to 6, without discussing or even informing me of the change. (I found out at the hospital's infusion center.)

My new Onc said the pre-sugical chemo was over the top. It has made me very sick. After my 1st tx, I was sick for 5-6 days and it got worse with #2, as it took me 14 days to feel a "little" better. My son and DIL took me to lunch Saturday then stopped at the store. I almost collapsed. I am still very weak but will be having the last TC this Friday. The only reason he has ordered #3, was because I will have a 3-4 week wait for surgery and he doesn't want the cancer to start growing again.

Cynthia1962

Joanne - Congrats on almost being done with chemo! I hope all goes well and you have minimal se's afterwards.

My onc isn't big on doing a lot of scans, either. Prior to chemo, I had a CT Scan, bone scan, and MUGA. I'll be having another CT Scan to make sure nothing has been spreading during chemo and that's it for now. I once asked him about an MRI on the "good" breast and he said that it wasn't necessary because even if there was something there, my tx would be the same. lol Can't argue with that, I guess. Good thing I trust his judgment.

Lisa - So sorry to hear about your "night of the ulcer". I laughed when you shared those words from Finding Nemo because I've thought of them myself when I was feeling my worst. I hope you feel better very soon!

Jean - I'm so glad and relieved that you have a great onc now. And, only one more chemo - Yippee! I hope the additional nausea meds make a huge difference in how you feel afterwards.

I hope you don't need to do rads, but if you do it sounds as if it's a breeze compared to chemo. I had my consult with my rad onc today and I'm feeling much better about it than I was. He says that except for feeling a bit rundown toward the end, I'll feel fine otherwise. I have my planning session this Thur. already and will have a total of 33 txs. He said it'll lower my chance of local recurrance from 40% to 5% or on par with having had a mastectomy. I would have had to have rads either way, but I'm glad having a lumpectomy didn't increase my risk of more cancer.

Take care everyone,

Cynthia

Cynthia1962

Harley,

How did your 2nd chemo go today? I hope you're feeling ok! Halfway there, girl.

I had my labs today and my white count was down as expected, but instead of giving me the Neupogen shot, they gave me the Neulasta. I'm waiting to see if the se's will be much worse than they are with the neupogen. I'm experiencing some dizziness and rib cage pain, but maybe it won't get worse. And, it stung a heck of a lot more than the neupogen. Ow! So much for thinking the neupogen hurt. lol I AM looking forward to not having to drive to the onc's everyday this week, though.

Cynthia

Harley44

Cynthia,

The onc appt. went well, I guess. He stuck me with his nurse, which was a good thing/bad thing... Good because I didn't have to deal with him, bad because he was making a statement... he doesnt want to see me... so what next? After my txs, I will still need to see an onc., but what??

I told the nurse about the diarrhea, and the headaches, so she gave me a rx for something that is for chemo induced diarrhea, and another Rx for Relapax which is for migraines. Since I was dx'd with migraines earlier, but never able to get a Rx that worked for me, I had asked my last dr. if I could try Relapax, but she pooh poohed me. So now I can try it to see how well it works.

I also asked if there was something to do about my wbc before I end up in the hospital with an infection, but she only vaguely mentioned getting shots to take home for FIVE days... So when I went in for my treatment, I asked the nurse about getting Neulasta, since my dh won't be here, and I'll have to get the shots myself, and I had trouble last time. So she left to go ask GOD, the AH Onc. When she came back, she said that he agreed. So I go back tomorrow to get my ONE neulasta shot!

Why did you get Neulasta, if it had been one week since your last tx? I'm confused? I didn't think you could get Neulasta that late after your tx.

But, great news!!! Yes, it's my SECOND Tx, and I'm HALFWAY THROUGH!!!! YIPPEE!!

I will have to have a melon ball tonight!!



Thanks for your post... I am feeling SO much better!

I'm a little tired, but I'll be ok...

HARLEY