Starting Chemo May 2008
Comments
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My onco puts a bunch of gloves in the freezer. You just put them on
Wayne
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Wayne, welcome to the place none of us wants to be. There is a whole thread/discussion dedicated to Taxotere/Cytoxan. You might drop in over there sometimes, because there is a lot of collective experience that will help you to deal with the side effects (SE's) of that combination of drugs.
Here is some info on the use of ice gloves during Taxotere infusions:
http://cervicalcancer.about.com/od/treatment/a/nail_care.htm
I don't want to sound like a pessimist, but I think the ice glove thing is done to minimize skin and nail problems caused by Taxotere--not the peripheral neuropathy. The nail problems and scalded hands (hand-foot syndrome) are due to leakage of Taxotere through capillaries in the hands, and the toxic effects of Taxotere on the cells that produce fingernails and toenails. Cooling the blood that flows to the hands supposedly reduces the influx of Taxotere to capillaries in those tissues.
The peripheral neuropathy is something very different. It's due to a toxic effect of Taxotere on the axons that carry nerve impulses. Axons are very long--a single axon can reach from the spinal cord all the way to the tip of a toe, for example. The longer the axon, the more likely it can be damaged anywhere along its length. That's why the taxols (Taxotere, Taxol and Abraxane) are more likely to affect sensation in the fingers and toes than in the skin on our shoulders, or our thighs or chest wall. Here's a neat animation of a reflex arc like the ones your onco checks to see if you have signs of neuropathy:
http://www.dushkin.com/connectext/psy/ch02/spinal.mhtml
Since there is really no way to control the contact of chemo drugs with our nerve axons, I don't think we can prevent the neuropathy by cooling the blood that flows to our hands during the infusion. Here is a website that discusses the neuropathy associated with taxanes:
http://www.cancersupportivecare.com/nervepain.php
Oh, and remember--the chemo drugs stay in us for at least a day or two. So, using "ice gloves" or a "cooling cap" only during the infusion might not be long enough to prevent all the problems.
Has anyone noticed that the "cooling caps" and "ice gloves" are popular in Europe and even in Canada, but oncologists and the FDA here in the U.S. are still pretty skeptical about them?
Sorry. I really am having a pretty good day; but I guess I'm feeling kind of grouchy. Maybe it's a "not-so-bad" day. Rock, I'm sorry to hear about the BRCA2 result. That's sucky enough to go on Traci's thread. At least now you can think about increased vigilance and possibly preventive measures. Terrific, huh. Randie, oh my gosh--pulmonary embolism. That is scary. At least they caught it and your ds is getting good treatment. It's a long haul, and he'll have to be really, really careful. Linda, I'm gonna try the T-shirt thing; but I sure hope my dh doesn't drop in on me 'cause he'll think I've lost it for sure!
Hugs to all--
otter
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{{{Rock}}} - I'm so sorry to see that you got the crappy news on the BRCA testing.
Maybe this week instead of poolside, we should head deep into the rainforest where the only things we have to talk to are monkeys, birds and other beautiful creatures. No phones to be had.
~Adrienne
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Wayne - Welcome.
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Angelsaboveus . . .glad the lump is a non worry.
Rockthebald,
I tested for the BRCA genes as well as the other couple of thousand. I am so sorry to hear you are BRCA2. It's another hit. However, you have the information and you will make decisions based on your information and you will help others make good decisions and we'll beat the hell out of this crap. I am thinking of you.
Randie,
Am thinking of your son. Hope you get good news soon.
Karen, my second A/C SE were worse and better with the second. I was less freaked out but it took a few days longer to feel normal. You are going to be fine. You'll feel less stressed the second time around. You'll be familiar.
Adrienne,You are my heroine...I had longer se in terms of a bad headache and took longer to feel all the way back to normal. I am hoping that stays the same or turns around for dense dose #3 on Thursday.
Thursday...Jamaica. Yes. Felt so normal today...walked three miles at a fast pace. The walking is so good when I feel good. It makes me feel better when I'm off as well, but it is glorious when I feel good.
Women, our Susan Komen team, the Fast Eddies, are walking on Saturday here in Seattle. We are in fourth place in the city and have raised close to $8,000. We have more than 30 people on our team. I feel so blessed. I hope I feel good enough to walk. Methinks I will. So...two more great days until I step up to the bar for #3 on Thursday...Jamiaica...yes.
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Hi everyone,
Wayne - Welcome and I hope you find what you need here.
Rock - So sorry about the news. Hugs to you, my friend.
otter - The only reason I could translate my mother's mixed-up statement is because we have had a thousand (o.k., maybe only a few hundred) discussions about how she says things. This is similar to when she begins a statement with "You should..." or (my personal fav) "Don't you think...[insert her opinion here]". Like, "Don't you think the girls might need a sweater?" or "You should rest." Motherspeak. That's what it is.
Angels - Glad the lump was nothing and that you've been "cleared for take off" but for Thursday, not tomorrow.
Randie - Sending up prayers for your son and his wife.
Adrienne - I will go wherever you like this week! But we should tell Sharon where that is, since she goes first tomorrow.
Good luck, SharonF!Eddie - Good for you and your team! Yay, Fast Eddies!!
I really like the idea that s/e's get better (or at least stay the same) since I have my 2nd tx on Thursday.
But I am prepared for the "constipada"! Good news today - my WBC's are back up where they should be, so I went to work today. Bad news - I woke up with neck pain and could only turn my head so far before I had screeching pain shoot up into my scalp and down into my shoulder blade. This has happened before, so I can't blame it on bc. If it's no better tomorrow, I will call my PCP. Glad I still have 3 Darvoset left from surgery!!
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Once again, lame-o here is going to simply say "What she said!" to everyone's posts. (I DID read them, I swear!)
Wayne: You're in excellent company, here. (And frankly, IF AND ONLY IF you ever feel like sharing, I would be interested in knowing how your diagnosis came about given my brothers' heightened risk. But there's no pressure.)
Adrienne & Co: I'm good with rainforest. I absolutely am.
RanD: I'll keep your ds and dil in my thoughts.
Cris: Neck pain -- nooooooooooooooo! (I'm convinced my weird "shrug of revulsion" spasms were the result of an uncomfortable scalp-irritating wig. Any chance you're wearing a Bandanna of Pain these days??!!)
Eddie: I accept Walking as my Personal Saviour. Sorry we're partners in the BRCA thang. I've told my 16 first cousins, my four siblings, and my 6 surviving aunts and uncles. So far, everyone is taking the news well.
Otter: OF COURSE I look forward to a day when you are no longer on these boards. OF COURSE I do. But in the meantime, I am so very very grateful to you for your sound observations and ability to distill lots of knowledge into something comprehensible.
Here's to Otter
Thank heavens we've got 'er.
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I am from the June chemo group but I have to ask all you 'old timers' how long it took after your hair started falling out for it all to be gone. Mine just started and rather than lose it in big clumps (which was my biggest fear), I had my husband buzz it before he left town on business this week. Wore a wig to work and that wasn't too bad, but I can't stand the stubble. I think it looks and feels worse than having it all gone.
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Texasmom, I think yours is one of those questions where the answer is going to be, "it depends." I had mine buzzed close when it was coming out in clumps, and expected that I would soon have a perfectly smooth, hairless scalp. That hasn't happened (and I'm almost 2 weeks out from AC#4): I still have short stubble. It's barely visible, but I can certainly feel it if I rub my head. (It feels like unshaved leg stubble.) When you say you think it feels worse than having it all gone - do you mean it hurts your head, or that you were hoping for totally smooth? I know some women have recommended using a lint brush or duct tape (which sounds like a big OUCH), but I haven't tried that, so can't speak to the results.
On a different topic - I think the discussion of what to expect in the way of side effects as we go through more treatments is really interesting. The comments seem to be all over the map, which I take to mean that it's another of those very individual things. My experience with fatigue, which I had been told would be cumulative, has been anything but straightforward. I'd say it was most prolonged after AC#2 (I needed/wanted daily naps for a full week), but deepest after AC#3 (I spent essentially all of day 4 sleeping). It's actually been better after AC#4, even though my RBC/crit/hemoglobin dropped lower (just found out hgb was 10.9 at my last blood draw).
Linda
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Texasmom, you can buy a very soft wig cap that may make the wig more comfortable rather than wearing the wig on your bare scalp.
I have lost 60% of my hair but there is still about 40 % of my scalp that is covered in very short hair (some of which seems to be growing). I'm happy for the remaining hair as I think it probably looks less weird on me than being completely bald! -
Texasmom - I neurotically pulled all of the hair that would come out out over the course of 2 days. My dh buzzed it at that point to maybe 1/4 in. I probably had 10-25% left ( I know that's a big spread, but I had been coloring to dark blonde/light brown for years, and it really was gray/white, so hard to tell). After that I didn't notice any more fallout than normal. I'm 14 days from tx 3 and it seems to be growing back. Sooo - bottom line, like Linda says, everyone is different.
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Hi everyone...I hope everything is going okay. I had my third DD AC treatment on 6/11 and the Neulasta on 6/12. Although I have not had any nausea after any of my treatments, this time it seemed to just take all my energy. On Sunday I felt pretty crappy and seemed to feel weepy all day. I haven't really done that much crying but Sunday I couldn't seem to hold it back. Anyway, my fourth and final DD AC treatment will be on Wednesday, 6/25 and the Neulasta on 6/26. Then two weeks later I will start 12 weekly Taxol treatments. The only other real problem I have is that I don't have any vacation time at work and I can't seem to work more than 20 hours a week so the paychecks have really sucked lately. I'm sure the bill collectors will start calling soon! Anyway, good luck to everyone with their next treatment.
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HELP! To All Especially OTTER
I also posted this over on the Taxotere/ Cytoxin post. My onco nurse just called and said my onco threw the ball in my lap and for me to run with it. I don't know where to go.
After 1st treatment, I had both Hand, Foot Syn and slight neuropathy. Hand Foot was limited to just big toes and thumbs. Sunday skin peeled off right thumb and looks like left big toe is getting ready to peel. They want to know if I want them to lower the dose a bit. As it is my dose was only 75, I weigh 153 and am 5'5". I am afraid to go any lower I want this taxotere to work at fighting. I'm willing to give it another try but to take all precautions. During drip should I try to keep areas iced? Help, treatment is tomorrow.
Enjoy the day, Karin
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Finished #3 today. I didn't see the posts about the Rainforest, so my "private" jet took me to Jamaica. It was actually very nice. The truth is that I got to go to a clinic branch of the hospital, and it's much nicer. Instead of 75 people in the waiting room, there were 6. And towards the last 1 1/2 hours of the infusion, I was the ONLY one in the infusion room! I know it's not always like that, but it was nice today. Now, just waiting for the se's to hit...hopefully not until Friday like last time.
Rock-SOOOO sorry to hear about the BRCA test! I know there's a lot you have to sort out. I had the test and it was negative, but I think DH (who's a doctor) was kind of hoping for a positive, because then we could just go ahead and get rid of the five "cancer causing" organs that women have. Easy for him to say! Honestly, since I have breast cancer, and I've had changes in pap smears in the past, a little part of me thought that might not be such a bad thing though, because I plan on being around for a very long time!!!
Randie-Prayers going out to your son. That's very scary, and another thing you don't need right now. Keep us posted.
Wayne-Welcome! You will get a TON of good info off of this board. Also, I think that Otter's right about the gloves...if anything, it's used for saving fingernails, not for the neuropathy.
Eddie-Way to go on the walking! I'm very impressed!
Karin-I wish I could help, but I really don't know what to tell you. I don't envy your having to make this decision. Has it all cleared up, and was it very painful? That might help you decide whether or not to try it once more. Good luck!
Good luck to all who go tomorrow!
Sharon
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Hi Everyone,
Texasmom- My first treatment (TCH) was 4/25 so I have had 3 treatments with weekly Herceptin- my hair started coming out Day 16, I buzzed it short - I think a number 2 on the clippers. I used a lint roller for about a week and TONS came out BUT I still have probably 40-50% and it is growing on top of my head (the sides are not growing). I was salt and pepper and the pepper has definitely come out more than the salt!!!! I asked the nurses and they said it was not that unusual to have some hang around longer but they still think I will eventually lose it all.
We just got back from our 2 day mini-vacation in Louisiana. I went to the LGFB class there and it was great- they had box lunches for everyone and we were allowed to bring a female guest- my 18 year old dd went with me. Only two patients in attendance- there were supposed to be 6 but at least one had gone inpatient with problems. They gave us VERY nice makeup sets. The other attendee was having an allergic reaction to taxol and wouldnt put on any makeup so I was the demonstration model and she did a nice job- not too heavy or gaudy. They also modeled all the hats, wigs and scarves on me so my dd has some interesting pics of me in biker girl hair, short spiky wigs, T-shirt turban etc.
I went to the spa for a facial today- was a GREAT treat and really nice- Shreveport is only 100 miles away so Im hoping we get to have another mini-vacation this summer- was a nice trip, not too far from home and LOTS to do for adults and kids. Rock,I went bald to the spa both for the morning treadmill session and for the spa treatment!!!!
Back to work tomorrow- for 1 day and Thursday is a Herceptin day this week!
I walk a LOT and think it really helps with the taxotere and neulasta se- mainly the achy legs and hips. I walk about 90 minutes a day- usually two 45 minute sessions except Days 2-5 when Im lucky to get in 30-40 minutes a day in 10 minute sessions and then I build back up to the 60-90. Im surprised I dont fall off the treadmill on days 2-5 because I feel so spaced out those days. Oh, I walk UNDER the ceiling fan, with a box fan blowing and something mindless on the TV- I definitely cant tolerate walking outside anymore since East Texas is up in the 90s everyday!
Hope everyone is doing ok and managing the se this week- see yall in the Rainforest on Thursday!
Kristy
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Rainforest sounds good for Thursday. I am THERE!
On BRCA, I was negative....but I tested for both plus the other 2998 ones.
Wayne, welcome.
Hair conversation. I am two days out from DD A/C #3. I still have lots of stubble. I DID use duct tape...it hurts not at all. It's kind of fun. Don't tell anyone. I have decided that men shave their heads to look like this good so I am going to go out bald whenever I DARN WELL feel like it. Too cold today in Seattle so baseball cap day. You heard all the details about other hair but just know, my arm hair and leg hair (dagnabbit) is still hanging out.On SEs, I am only two in . . . as I said the other day, some are better; some are worse; I get scared when I think that things get cummulatively worse. I have had a very easy time with SE so far...no nausea; big headaches second time around, but handled well with Tylenol; some bone pain with second neulasta shot, but handled well with Tylenol. Tylenol is my friend. Some indigestion first time and major metal mouth but biotene fixxed it for second time and appetite much better second time around (I'll probably turn into a blimp). Best thing to report is I could think clearly beginning on Sunday and Monday.
Women (and Wayne), I am wishing each of you an easy week. I am feeling like I did for round one this week...like round three will only get me 37.5% there while round four will get me half way there. One thing that puzzles me greatly -- seems like some of you are doing lots of bloodcount checks along the way. The protocol here is that I get my blood taken just before chemo...if the counts are good, I am good to go. Are some of you checking along the way or am I just misreading? Talk to you soon.
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P.S. Randie,
What do you hear from your son?
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Eddie, my onco doesn't do blood work mid-cycle either. She gives Neulasta automatically with each Taxotere/Cytoxan tx; then she checks my cbc (wbc, hematocrit, hemoglobin, etc.) on the day of my next tx. The assumption is that the Neulasta is protecting me well enough during the 3 wks post-tx. The blood work on the day of the next tx is just to be sure it's recovered and that tx doesn't need to be delayed.
The only time she would check my wbc in-between would be if I had a fever and there was a reason to think my wbc was dangerously low (as opposed to "low but going up soon"). I did have a fever (100.6) on day 12 or so after tx #3 and #4 but because it was just sinusitis and I live so far away from my cancer center, they just prescribed antibiotics for me and said to call if I wasn't better in a few days.
otter
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my chemo is scheduled on 6-24, my surgeon wants me to have a
chemo port, did all ya'll have one??? Please help. I am so confused
as she never answers my qustions and when she does she lies.
help., lynn jobe
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Lynn - I have a port and I am grateful that I do. They can do both the blood draw and chemo through the port without multiple "pokes" to find a vein.
Have you talked to the Oncologist? That was actually the person who requested the port be installed, in my case.
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(Karin, I posted a reply on the TC thread. I hope your onco helps you with this decision and doesn't just leave it up to you. That's why you're paying him the big bucks.)
otter
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Otter, thanks I got it.
Enjoy the day, Karin
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gm2kieri/Ellie - Glad your tx went well but sorry you were weepy. I think it hits all of us differently.
SharonF - Also glad your tx went well - sounds a bit relaxing! Sending minimal s/e thoughts your way...
Kristy - Sounds like you had a lovely two days! And I'm glad to hear some good stories about the LGFB class...
Eddie - I was having my counts checked about every 4-5 days because my onc prefers Neupogen and wanted to see what my "cycle" would be so we know when to start the Neupogen after tx #2 on Thursday. I don't think I'll be doing it as often this go round.
Karin - I'm not much help with your question (I'm sure otter's was) but I will be thinking about you and hope that it goes well tomorrw.
So the rainforest it is this week! I could do that - I'm hearing the birds and other cute animals now...
Rock - I have moved our lounge chairs. Look for them by the big banana tree.
Good luck and cheers to Rock, Adrienne, Karin, Gracie713 and Jean tomorrow!
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Adrienne - I just picked this up from another thread, but I didn't realize you were still fighting the bronchitis. I do hope everything is a-okay for tomorrow.
[I edited this because I just wanted to add that it just always seems to odd to me to wish people well so they can go have chemo...that should be an oxymoron, shouldn't it?]
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My blood is checked weekly BUT I have treatments weekly- TCH every 3rd week and Herceptin each week. After chemo when the Herceptin goes to every 3 weeks, they will just do it the day of the Herceptin treatments.
Kristy
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Thank you Cris - I think I'll be good to go today. Just a little cough every once in a while. Its funny because I keep telling them I'm just having so much fun with all this I don't want to miss a week. When in reality, I want to be done on schedule and not prolong this any longer than it has to go!
Eddie - My Onc had my bloodwork done 7 days after first tx just to make sure I was handling it all ok. Since then, my bloodwork is only done the day of treatment.
Ellie - the financial side of this really does stink. Sending positive vibes your way. I remember the weekend following treatment #2 I was pretty weepy. I was just so tired of being tired and couldn't imagine continuing to do this. But here I am ready for the party, yet again.
Kristy - glad to hear of good experiences with LGFB. Sounds like you had a nice relaxing two day getaway!
Getting ready for the rainforest today. I can already hear the sounds of the wild.
~Adrienne
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Karin, please let us know what your onco decided to do about the Taxotere dose for today's tx, and what he and your onco nurse suggested for discouraging the development of HFS this time.
otter
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For anyone: back to the Nioxin subject. I am confused about which "system" to try #1, #2, #3 which one?
My brain is sooooooooo foggy I can't get it figured out.
Robin
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I'm using 3, which says for fine hair. Since my hair dresser gave it to me for free, I'm using it. However, my hair has never been fine. It's like horse hair, super coarse
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Round 2 complete. Onc and nurses were pleased with the mild side effects of #1. Hoping that it stays that way. Will go and get Neulasta injection tomorrow. Hopefully WBC's won't go quite as low as they did with #1.
Nice cool breeze here in the Rainforest, with lots of cool water!
Hoping for the best for everyone getting treatments this week!
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