Anyone on just Taxotere and Cytoxan?
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HI ladies. i know it has been a while but i got admitted to the hospital with an abcess under the arm i get my neulesta shot in. it was to be over night from friday that ended up being till today. and since i still feel bad i have to push back my chemo till next week which pushes my end date back. i am so happy to be home. but upset about the chemo thing. but really just happy to be out of the hospital and home
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Hi Everyone
I'm also having treatment this week - I'm getting #3 TC on Thursday - wishing all an easy time and virtual hugs to everyone! (Sandra - put me down for treatment #4 on Oct.30 (LAST ONE!)
Gail
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LASHON--I think we were all beginning to worry about you. What a nasty time of it you are having! Very sorry to hear that you had to be hospitalized. Is the abscess related to the painful Neulasta shot--and if so--what do they plan to do about the Neulasta the next treatment? Please let us know when they re-set the new date for your next infusion. Hope you don't have to wait too long, knowing how anxious you are to get done with all this stuff.
Gail--Good luck with things on Thursday. I have your schedule down.
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Hi to everyone having treatments this week. Mine is thursday and I just realized how good I've felt the last few days - am having a hard time knowing that's going to radically change in a day after 2 tx's that made me feel awful. Will try to be positive.
Deanna - good luck tomorrow - sorry we didn't get together last week but let's try for next week or when we both feel up to a nice walk.
Thinking of everyone - hugs,
Gail
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Teena & Deanna - Thanks for your input on the rads. It is very helpful!
On the wig subject, I think Teena is correct on the "cranial prosthesis" wording. I understand you have to be very specific and have a script from your Onc. Also, the woman at the shop where I purchased my wig said that the state of CT has a law in place that insurance companies must pay up to $350 for a "cranial prosthesis", so you may want to check the laws in your state in case your insurance company gives you a hard time. I have BC/BS and I have not submitted for reimbursement yet but I'm hoping that it's not going to be a problem.
I also purchased a Raquel Welch wig and am happy with it. One tip that I got was that if you have dark hair (I have dark brown), go a shade lighter because us chemo patients tend to get more pale and that way there won't be such a stark contrast between your skin and hair. That was something that I wouldn't have thought about and was good advice since I do tend to get pale when I'm not feeling well.
Sherrie
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Lashon! I am so sorry! I will be watching for you and praying you don't have any more troubles like this!
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Good morning to all,
I called the local office of the American Cancer Society and inquired if they offer free wigs, hats, etc. for people with cancer and they said, "oh yes, we certainly do, just stop by between 8:30-4 and pick out what you like." So I'll definitely plan a field trip there in the next few days. And of course when I no longer need the stuff, I can simply drop it off there! Perfect. What a great resource. The ACS also has a pretty reasonably priced online catalog too.
After reading Jennifer and BonnieLee's experiences, I'm hoping I may be one of those who does not lose much, so I guess I'll wait and see. My husband is also pushing me not to cut my 12" mane and stay positive so I guess that's the plan. I'm on day 6 of tx #1 and all is well. Other than an almost constant headache since I took the steriods on the day before, a bit of nausea and acid stomach on days 4 and 5, some swelling in my legs and a twinge of neuropathy that comes and goes, I've been okay and able to work full time.
Has anyone read the book, "Lopsided. How having breast cancer can be really distracting. A Memoir by Meredith Norton." This book is hysterically funny and I highly recommend it for anyone who needs a laugh and going through what we are. The author's matter of fact treatment of the subject and her candor and wit are so refreshing, I am really enjoying it - a quick read and hard to put down. Something to bring to those long tx sessions in the chair....
Love to all,
Teena
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Teena, I don't know if you meant this to be funny, but I had to chuckle: "Other than an almost constant headache since I took the steriods on the day before, a bit of nausea and acid stomach on days 4 and 5, some swelling in my legs and a twinge of neuropathy that comes and goes, I've been okay...".
When I was in the middle of Taxotere & Cytoxan, I remember someone else saying, "Today was a good day--I didn't feel horrible." Nobody who hasn't experienced chemo would understand why anyone would make a statement like that.
BTW, don't kid yourselves--insurance agents and adjusters know exactly what a "cranial prosthesis" is. They are basically accountants, though. They can't read between the lines or make assumptions about what someone might have meant. Most insurance policies cover "prostheses" as medical devices. So, if a wig is being used as artificial hair due to a medical condition, it is a prosthesis. It's not a "wig" in the everyday, cosmetic sense. Thus, the policy will pay for a "cranial prosthesis" because, technically, that's what it is, and that's what the policy covers.
I think we would run into a similar situation if our prescription for a post-mastectomy breast form said "silicone breast enhancer" rather than "breast prosthesis."
otter
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Teena, I will have to find that book. Just the title made me laugh. It's funny too because my initials are SLO, and my girlfriend said I should change them to LSO for Lop Sided Ortiz. Too funny.
Just a reminder: I am gone to Sedona and won't be returning till late next Monday night, so the schedule won't get posted till Tuesday. I don't think anyone is getting an infusion on Monday the 13th, but if I missed someone, please let me know. Hope everyone gets through the week OK.
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Sandra... Have a wonderful time in Sedona! Looks like a perfect day to drive over there.
Otter... Thanks for pointing out the humor in Teena's comment. I had read her post, noted & empathized with her several SE's, but never stopped to think how ludicrious it is that those of us on chemo sometimes feel we're having a great day if we feel halfway normal and are able to function with our SE's!
Not sure what I think of the cranial prothesis approach to getting a wig covered, although I've heard that before, and your explanation is definitely food for thought. My ins. policy explicitly excludes wigs. Would someone try to get a wig for other than a necessary medical condition, such chemo hair loss? I guess I can ask my onc for the RX, and it can't hurt to submit a claim, but I'm not sure if I'm trying to get around the policy guidelines. Are there cranial protheses in addition to wigs? I guess I am just so grateful for coverage of outlandish charges (like $43,000 from the local hospital where I had my lumpectomy, which was done on an outpatient basis!), that I hesitate to push them on a $350 wig. By the way, that $43,000 was more than UCLA charged ($40,000) for a 4 night stay when I had my mastectomy+Diep flap. While I'm on the topic of expenses... Does anyone honestly know what makes Neulasta worth the $3,000 or so price per dose?
Teena... Thanks for the book recommendation; sounds great! There's a thread somewhere on here called "Read Any Good Books Lately?" You might want to post that one there.
Gail... Hope the river trip helped you refocus for tomorrow. Looking forward to getting together again when we're both recovered from this week's tx's!
Deanna
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Unique, call your chapter of the ACS and ask about the wigs. I didn't get mine at Look Good, Feel Better, I believe there was a grant for my hospital that helps pay for the wigs. The cancer center here has a Bloom shop and they have wigs, skin care products, jewelry, some swimsuits and t-shirts, hats, prostheses, etc. I think the wigs they have are many of the same in the TLC catalog. They are not used, they are all new in boxes and if they don't have the right style or color they get more every week and can order what you need. I hope they have something similar where you are.
Otter, I laughed at Teena's comment on SEs also. Where else but here can you list so many things going wrong and still think things are pretty good?
Elizabeth, my first treatment was just over two hours. The second one things kept going wrong with the machine and I was there three hours. Check the list pinned to the top of this board for things you may want to get before treatment. Don't worry, once you get started it's not so bad. The anticipation was much worse than the actual treatment. And the sooner it starts, the sooner it's over. You'll be fine. If we can do it, you can too, and we're all pulling for you.
Chris
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Chris & Teena ~
I'm hoping the ACS can help me out with this, too! I'll call again, who knows if a diff person picks up the phone maybe it's a different story. A free wig would be the cat's meow. They said originally it was by appt only, so I made an appt for a time that turned out to be ridiculous, so I had to cancel it. I was disappointed because they didn't have one before I was "scheduled" to lose hair BUT I'm on already on Day 14 and the hair is still all there (!!!) BTW, I got my Cozy Caps from headcovers.com and am in heaven! So comfy and yet pretty. I have a scarf wrapped around one right now. Maybe I should upload a new avatar to show you all how they look.
Take hope! I am feeling fine, basically felt like a bad flu the whole first week but since then have been a-okay and just enjoying the feeling like myself!
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Hi All, I'm new to this thread. I had my second Tx of Taxotere & Cytoxan on Oct 2. I'm scheduled for #3 on Oct 23 and the 4th and final tx on Nov 13th. I am totally amazed at the cost of treatment - the co-pays are overwhelming! What happens to people who do not have insurance?
I had no idea that Neulasta was $3,000.00 per dose! Yikes
Donna
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Positive thoughts and prayers for everyone having tx this week and hope it goes great.
Annie - Good luck with the wig quest...I'm watching you to see if and when the hair starts to go as I feel myself like someone waiting for the "other shoe to drop." Otter - my litany of side effects are rather humorous and something only we can understand going through this - but hair loss is a serious matter! Today I can add leg cramps and diarrhea to the list of ongoing thrills...
Sandra, have a great time in Sedona!
Deanna - finished the book and it was indeed fabulous. I highly recommend it. I picked it up at my library in the "New" section.
Best to all,
Teena
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Donna, I used to work in a lawyer's office and did collections for some medical establishments. The sad truth is that a lot of people without insurance or with inadequate insurance end up filing bankruptcy. You can understand why.
Chris
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Chris - how sad! I know that it causes medical cost to escalate for those who do pay.
Donna
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When I was first diagnosed I picked up Lopsided at Barnes and Noble - I too recommend it. It definitely allowed me to laugh in some very tough times.
On the hair note - it will be obvious when the time comes. Two nights ago I woke up multiple times with scalp aches (like you let your hair down from being in a pony tail too long) - then the next day it started coming out in handfuls. I have very thick hair and you can barely tell to look at it, but it is so irritating to have loose hair everywhere - it has to go. I think I read that only 1% of people on taxotere keep their hair, and obviously I'm not the 1, so want to just embrace the next step. Not because I'm not vain, but because every step takes me closer to being done with the treatments. And I am sooooo ready to be done.
I'm amazed at how well I feel. I've actually gone for 2 runs this week - like a normal person. I know next weekend will be back in the pits, but still, today, I feel great. On the annoying front, I know have acne - ridiculous. I did get a mast bra/prosthesis finally - wore it for the first full day yesterday and by the end was really tired from how heavy it was. I think I'll being wearing my cotton fluff for most days and the real thing for the days I'm with clients.
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Insurance issues and paying for treatment shouldn't be so stressful. It is a very sad thing that on top of dealing with breast cancer, patients have to worry about how they're going to eat and pay for treatment, too. I'm looking at a few thousand out of pocket and I have blue cross/blue shield insurance. I think the hospital billed my insurance almost $7,000 for a 1 hour walk-in biopsy procedure with a local! That is outrageous. The greed is stupefying.
And then, they don't want to pay a few hundred for a "cranial prosthesis" when you lose your hair? Unbelievable.
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My hair started falling out in clumps on day 10 of TX 1 so I shaved on day 12 because it was so messy. It's funny because I am on day 13 of TX 2 and I have a light head of hair that is less than 1/4" stubble and I have about 3 hairs on the top of my head that are 1/2" and must be from the original shave. I have BCBS and when I called I was told they wouldn't pay for my head prosthesis even tho I have a script.
I have probably planned something really stupid. I am having TX 3 on the 16th and flying from Iowa to Philadelphia on the 21st. I've been reading that the effects are cumulative and 3 could be worse than 2. On the 22nd, I will be giving a Victim Impact statement to the judge at the courthouse in Philadelphia. The good news is that I will be able to read from a prepared statement so even if I have chemo brain I should be able to pull it off. It's a national case so maybe you will see me on tv! I hope I am able to pull this off. Most likely I will run on adrenalin and crash when I get done.
For the scheduler, my next one is on the 16th.
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Hi Everyone,
Had TX # 3 yesterday. Still feeling active today & OK from the pre-meds. Dex kept me up until 1 AM.
Just wanted to share that I've had no trouble with the nausea in any tx - zero. But the headaches & dizziness from both tx 2 & 3 were awful. I've dropped Aloxi from the first TX, did Kytril for the 2nd followed by Zofran, then Kytril - still had bad headaches for days. This time my onc prescribed a followup of more dex (dexamethasone) each day rather that the kytril or zofran. I have no idea if it will work & prevent both nausea and headaches - but willing to try.
Anyone with any thoughts on this would be really appreciated!
Sandra - hope Sedona was great - I love the red rocks!
Iowagirl - I also planned to lead a major seminar 2 weeks after my tx # 3 - hoping I'll feel great and planning to! I'll route for you if you'll send me good energy & we'll both come through!
Deanna - thinking of you & wondering how #4 feels? Take good care - nice that's it cooler in the desert now.
Hugs to all!
Gail
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Gail/DesertRider--
I had 4 tx's of Taxotere & Cytoxan, and never had trouble with nausea/vomiting either. Well, okay, the day after the infusion I sometimes felt a bit queasy, but I nipped it with phenergan.
You said this: "...the headaches & dizziness from both tx 2 & 3 were awful. I've dropped Aloxi from the first TX, did Kytril for the 2nd followed by Zofran, then Kytril - still had bad headaches for days. This time my onc prescribed a followup of more dex (dexamethasone) each day rather that the kytril or zofran..."
My onco did not believe in over-treating anything. I got Zofran and dexamethasone (and Zyrtec) in my i.v. right before the T/C; and I took dexamethasone orally for 48 hours after each infusion. I had Phenergan and Ativan to take "as needed", but never took the Ativan and only took Phenergan on the day after infusion during 2 cycles. Even with that "treatment-lite", I never had nausea/vomiting, except for brief queasiness on that day after the infusion.
I'm thinking some of those powerful anti-nausea drugs (Zofran, Kytril, Aloxi, Emend) some of us are given might be causing the headaches. I don't know about you, but if I have a bad headache, it can make me nauseous. So, it might be worth risking mild nausea/queasiness to try and avoid the headaches. The dexamethasone has anti-nausea properties. Give it a try. Also, be sure you are drinking LOTS of fluids, especially plain things like water. Even mild dehydration can cause headaches (and nausea!).
otter
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Speaking of Insurance issues I just have to share what I told my Rads Onc Cigna representative. They keep charging me out-of-network for him and he is in-net-work. He gave me his representatives name and told me to email her to complain. In my closing this is what I said
"I never in my wildest dreams would have thought the excellent Cigna coverage I have would turn into one of my worst side effects of Breast Cancer."
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Gail, I had bad headaches, especially the last 3 treatments. This last time went a bit better as I was aggressive with 2 motrin every 4 hours and an occasional pseudafed. I would say the headaches started when I went off dex and by day 16 the headaches began to subside. I hope you get some relief. --Lani
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Thanks Otter, I do believe you are right and it's been the heavy anti-nausea drugs messing with my head. I'm giving the dex a try - thanks for supporting that thought.
Why do we just figure out what works in time for the LAST tx #4?????
Lani, Thanks for the reminder to add the motrin - I haven't been taking that either - good suggestion.
Sunny days to all,
Gil
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I didn't get the horrible headache until day 3 last time. I think it's from the neulasta shot. I got the shot in my stomach and didn't have any bone pain issues but the headache was really bad. I did have headached the first week but not as bad as that 3rd day so I think going off the decadron on day 3 may also be a part of it. I don't think it was from the nausea meds in the IV because I didn't have it the first two days.
Lashon: So sorry you have having these issues. It sucks to have the date pushed back. See if you can get the shot in your stomach next time. I had my 2nd treatment yesterday, so far, so good. My onc seems to think the 2nd one will go as the first so she booked me for an appt. on the 7th day which was the day I landed in the ER last time.
My hair started falling out on day 17 and I cut it short on day 19 and finally had it buzzed on day 20. I look like fuzzy wuzzy.
Peeps
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Hi ~
Day 14, and I'm shedding like a puppy in Spring. So far it looks just like my hair is thinner, I'm appreciating my short 1-1/2" hair cut all over. Nervously taking a hat wherever I go in case of it coming out in clumps.
The prices are awful, you guys are right. Blue Cross paid 5400 for my first chemo treatment, my portion is 417.00, because I've met my $3000 out of pocket. Ouch. altho I have to call somebody because they billed for one chemo on Thursday and then another on Friday. All I got Friday was the Neulasta shot.
I wonder if this is the real price or if I am paying for someone without insurance they treated for less, maybe a Medicare or Medicaid patient.
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Gals ~
Maybe this is very nit-picky, but I'm looking at my super-bill for my chemo tx #1 to see what dose I got. It sez:
Cyclophosphamide 500mg
Taxotere 80mg
Taxotere 60mg
Cyclophosphamide 1000mg
Anybody know what this means? The Cyclo I would imagine was a total of 1500mg and the Tax 140mg, is this a normal dose do you know? (I am a short person but a bit fat 155lbs) What are you all getting? If you are getting more or less, maybe because you're smaller/larger or heavier/lighter than I am?
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I don't know what my dose is, but I asked at my PA appointment Thursday how they figure it, and he said it's by height/weight. I haven't seen a bill yet - but, Annie, thanks for providing that information because I've been curious and now you've given me a reference point! My day 14 after the 1st tx is Wednesday...so I'm counting down until then the last of my "good hair days."
About headaches - my headache began the day before my first tx shortly after taking my first dose of steroids and lasted for about a week. I'm on day 10 since my first tx, and I've been headache free for about 3 days or so. So for me, I think it's related to the steroids.
The worst side effect I've had have been the charley-horses in my calves! About 4 days ago - a week or so after the first chemo - I developed diarrhea for 2 days and didn't increase my water consumption to correspond with all that fluid loss. That night, and the night after, I had TERRIBLE muscle cramps in my calves - first on the right leg, and the next night, the left. So yesterday, I drank a whole bunch of water and didn't have any last night...I'm hoping that it was from dehydration and I've fixed it...
Best wishes to all,
Teena
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Hi everyone,
I had my 1st tx 10/9 and it went OK, had an issue with my port and they were not able to access it. They said it was because it was still swollen & the surgeon planted it pretty deep. Next time I will try the emla cream and they will use a longer needle (oh what fun!). Then when they started the Taxotere I had an allergic reaction even after all of the decadron & benadryl. It was pretty scary! I was on my way out of the bathroom and couldn't walk because of the pain in my legs, back & chest! They stopped the taxotere, gave me some saline & tagament and it went away. Then they started it up again slowly and all went well. Felt good yesterday and went to work but left early for my neulasta shot. I feel pretty lousy today! Feel like I was run over by a truck! Terrible sore throat, hurts to swallow and my glands are so swollen it hurts to even touch my neck! Has anyone else felt this? I just hope I'm not getting a cold on top of all this! It seems to get better with tylenol so I'll just keep up with that. I'm really pushing the water to which helps. I just keep telling myself 1 down and 3 to go, but the way I feel today I'm not looking forward the the other 3 tx's!
I hope everyone has a SE free day!
Jen
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Jen, I know how you feel, at least one is over with! And hopefully the next one will be easier. Before the neualasta shot, if they didn't tell you this, take an aleve and a claritin - it seems to help with any effects from that. Drink lots of water. I didn't have any nausea until day 4 in the evening and it was a little bit of nausea but a LOT of acid burn. That's when I started taking the anti-nausea meds they prescribed and they helped. I also took Miralax in the evening mixed in Crystal lite for a week, starting the night before chemo, to avoid constipation. On day 7, I had diarrhea for 2 days. I didn't drink lots more water then like I should have, and got muscle cramps in my calves for two nights -- but didn't have that last night since I finally stepped up the water.
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