Anyone on just Taxotere and Cytoxan?
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Valerie, forgot to ask--where did you find the "fringe hair"? The place where I got my wig doesn't carry any, but I'd love to have some.
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Hi All,
Sandy - I am still in the "fill" process with my foobs, surgery was 4/29. My non radiated side is looking good, I had complete skin sparing on both sides, but my rad side is getting filled more slowly. Since starting chemo I will only get fills two days before each tx which is once every 3 weeks. So my rad foob is still looking like a prune! I still have a number of fills to go before I will be done!
I had told friends that the upside to being bald is that I could enjoy swimming this summer and not worry that the chlorine is damaging my hair. Of course with one semi filled foob and one "prune" figuring out the bathing suit situation is now the problem!
I do have my sleep cap ready to go and yes it does resemble what newborns wear, how funny!
Thanks Otter for keeping track of all of us!
I am feeling really good and only get tired on occasion. I am taking it easy though and looking forward to the day I can get back to the gym and starting taking off some of my cancer stress weight. I am hoping by Christmas to have a good crop of new hair, fully formed foobs and my old waistline back!
Wishing you all a great day!
Valerie
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Catlover....I got my fringe at headcovers.com and they have a "headband" that I can attach it to so I can wear it under all my hats. I actually got 2, one for the front and one for the back! My fringe is a bright auburn!!!
I am with you on the scarves.....after watching Desperate Housewives and seeing Lynette with the scarves (dark circles,chalky face) it was not a look that suited me! I am going for funky and fun.
Valerie
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My thoughts exactly--funky & fun. We are in The Funky Forties. I'm going to check out that headcovers website. We're going to the beach 7/6 (hopefully I'll be feeling good at 11 days out of tx 2), and although I always wear a hat on the beach anyway (didn't want to damage my hair with salt & sun, HA...guess I don't have to worry about that this year), I don't want 1/2 a bald(ing) head showing at the bottom. I guess I'll just have to wash the sweat out of them every night. Nice.
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Hi all,
Chemo #2 today did NOT go well at all. From the very start I had a feeling that something was going to be off. First, I had a different person put my IV in. It was uncomfortable and that feeling did not go away at all as time went on. I was not given enough time for my veins to "warm up" and I think the pain I experienced was a direct result of that (despite telling the nurse that one of the other nurses had JUST put a different warming pad on me). The nurse even noticed swelling in the hand, but all she suggested was putting amother heat pack on it, Then the pre-meds were not dripping properly. She had me "reposition my hand" and then the drugs started to flow. Once this was done, I got up to use the bathroom, looked down, and there was blood in the tubing. she flushed it. She was going to remove it and look for another vein but then showed me how I had "good flow" and then said I was "not easy," which I took as meaning that it would not be an easy task to find another good vein (we are limited to one hand). So, against my better judgement, I agreed to keep it in. What I should have done was insist that she remove it and that she find someone else to do it. G-d only knows why I didn't. It's so unlike me not to speak up.
Finally, the Taxotere was administered. Five minutes into it, I started to hiccup, then got this terrible heartburn feeling, and the next thing I knew, my face started to swell and tighten and then I could not breathe. I was able to call for help (respond time was excellent) and was given Benadryl through the IV and then oxygen. It cleared up in less than 5 minutes, but, of course, we were all completely freaked out, and, of course, I did not receive any more treatment today.
We met with my oncologist afterwards to discuss other options and he gave us three:
1) We could try the drug again but in a hospital setting, as I would have a 50/50 chance of having another reaction. Uhh, DONT THINK SO.
2) He could give me the drug Adriamycin along with the Cytoxan. Adriamycin is the drug that I told him I originally did NOT want, due to it possibly causing heart complications (my father died 2 years ago of heart-related complications from chronic heart disease). It also may cause "chemo-induced leukemia."
3) We could try the drug Abraxane in combo with Cytoxan. However, Abraxene is normally used for women with metastatic disease (this is not me), and so the likelihood of my insurance accepting this combo would be slim to none. This drug costs THOUSANDS.
So I chose option #2, which NOW means going back to my radiology group to have a MUGA. As long as my heart functions normally and the blood flow is good, I can take the drug. Unfortunately, this means more radioactive material injected into me and more pics taken (I had a bone scan less two weeks ago). Fortunately, the office was able to get me in for a scan tomorrow morning (after pulling strings with my insurance co. to get "emergency precertification)."
SO...my chemo regimen and schedule has changed YET again. I will be getting "AC" instead of "TC" and we are BACK to every TWO weeks, not three. The downside of this is I will have little to no recovery time so I cannot schedule my plastic surgery appts. in between (this slows down my fills and exchange surgery).
The BIGGEST thing is that the Adriamycin may seriously irritate my veins, and because I opted NOT to put in a port, I may run into problems. My onco and my favorite nurse said they would try the IV/vein next time (they are limited to one hand bc of my lymph node surgery on the other side) but if they had difficulty "getting a good vein," I would need to compromise and get the port or a "PICC line" put in for the next 2 treatments. This disturbs me, as it would mean having yet ANOTHER thing I did not want, and for only two more sessions, it just doesn't seem right or worth the trouble, pain and/or discomfort.
The only GOOD thing about this change is that chemo will now end even EARLIER than before as I will receive the three treatments all within the month of July. This leaves August to recuperate, and will hopefully enable us to make a trip down to Virginia in August to see family. Maybe I'll have some hair by the time my son starts school?!
Any thoughts on what happened here? A friend of mine would like me to believe that this was all the nurse's fault as she "misjudged the vein" and that's why my hand initially swelled up. She went on to say that "the liquid (aka meds) was going into the wrong place. She says if the needle was positioned correctly maybe this wouldn't have happened today. Does this make any sense?
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I don't know, deecsw, it almost sounds like there might be two different things going on.
The bad i.v. stick and the swelling in your hand sure sounds like, ... well, like a bad stick. I'm pretty sure the i.v. for my last TC infusion was a little crooked, too. It felt fine going in, only the chemo nurse used the same vein that had been used for tx #3, which worried me some. The pre-meds went in OK at first, but after 10 or 15 minutes of saline, my i.v. pump started beeping. The nurse said I had bent my wrist on that hand (they always put the i.v. caths in veins in my hand), and it occluded the tip of the catheter. She said the tip of the cath was really close to my wrist. I straightened my wrist and everything went OK after that.
But, a week later, I developed a nasty red spot about a catheter's length down my hand (toward my wrist) from where the needle went in--right where the tip of that catheter would have been. A couple of little veins in that area became inflamed, and the red spot eventually became a little ulcer in the skin over the vein. It's healing up OK now, but I'd be willing to bet the chemo nurse had that catheter tip snagged in the wall of my vein and some Taxotere leaked through.
As for your reaction to the Taxotere, I don't think it's unheard-of to have a reaction with the 2nd infusion even though the 1st went OK. I think there have even been some women who've had reactions with one infusion of Taxotere but not with the next, assuming they had better pre-meds with the next infusion.
I guess it's possible that leakage of the Taxotere could have triggered your reaction, but I can't put that together mechanistically. If anything, having a drug go i.v. is more likely to trigger a systemic reaction than having it leak out into the perivascular tissues. That's one reason why docs and nurses are careful when giving intramuscular and subcutaneous injections, to be sure none of the material is going i.v.
In any case, I'm sorry to hear you had such a rough time. One of my worst fears about my Taxotere treatments was having a bad reaction during the infusion. The other fear, of course, was having a bad i.v. stick that resulted in my hand swelling up.
BTW, even if you have to switch to AC, you can still hang with us here on the TC thread!
otter
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Hi deecsw -
In order for your body to react to anything, you have to be exposed to it at least one time. So first rounds of chemo don't usually bring on allergic reaction because your body does not know to react. By the second dose, your body has had time to set up antibodies to react to the med.
I had reactions but never had difficulty breathing. Good thing you are switching. Good luck and hope all goes well with rest of chemo.
Deb
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Hello all and could use advise. Had my first TC treatment 3 weeks ago and had a slight reaction. They gave me benedryl (sp) and I was fine. Today was to have been my 2nd treatment this time the type of chemo put me into anaphylatic shock . Thought I was having a Heart attack could not breathe. I'm fine now they did not finish the chemo today. I'll go back Thursday and we will try another type. Most likely AC.
Has this happen to anyone else?
The best treatment for medical illness is a cruise to look forward to !!!
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Holy Cow deecsw and Liz....not a good day for Taxotere.
I;ve had reactions but not to the severe nature of yours. Sounds scary and I'm sorry for both of you.
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Deecsw,
I had not even read your thread till Robink replied. Two of us in one day. Your reaction sounded like my first, but they went ahead and gave me the taxotere and it was fine.
This time they did not of course I think I scared the Doctor and the staff to death. A team rush in with medicine and oxygen to stabilize me. Reallt scared my Mom and my Husband.
Looks like AC for me too and my family has heart problems as well as I was on Phen phen for almost a year. My doctor is on vacation. We will have to decide this together he may say that chemo should not go forward at this point. We will see . My Oncotype score was an 18 so who knows what he will suggest. Does anyone know if you get sicker with AC then with TC? My TC was not too bad tired and down for about 3 days then ok.
Yes Robin bad day for TC !! Really Bad.
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Oh I forgot to mention the Hot Flashes started last night. They gave me a ton of steroids today and said after my crash from the Benedryl (sp) where I slept for 3 hours, I'll be wide awake and they were right I am. I hope the sleeping pill works tonight.
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Deecsw - so sorry to hear about your troubles. Definitely have the onc check with your insurance on whether or not they will cover Abraxane before you rule it out. Chances are likely slim since the standards do not yet include it as an option for early stage BC but be sure you can't use it before you walk away form it. Abraxane was a breeze versus Taxotere. From a cost perspective, my insurance was charged $1000 more for the Abraxane vs taxotere. I managed to get through my treatments before they changed the policy to only allow coverage of drugs that were already adopted into the standards for your specific stage.
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gramadeb, what you've said about the need for a prior exposure would be true if the reaction to Taxotere was a "real" allergic reaction. It might not be, though.
I did a mini-literature search tonight, and apparently, the pathogenesis (the mechanism) of the "allergic" reaction to Taxotere and Taxol isn't understood. The fact that there often is a reaction has been well-known since the 1980's, when Taxol was first investigated for its anti-cancer effects. Apparently, those studies were almost discontinued because of concern about the severe reactions.
There is some evidence that the reaction to Taxol (paclitaxel) is actually triggered by Cremophore, the carrier it's suspended in. Taxotere (docetaxel) isn't suspended in Cremophore, though; so it appears that some people are reacting to the Taxol or Taxotere directly.
I read a bunch of abstracts of research articles that said the mechanism of those reactions is still not known, but it may be an "allergy-like" reaction, rather than a traditional allergy. An "allergy-like" reaction looks clinically like an allergy (hypersensitivity), but it doesn't require prior exposure to the substance. Such allergy-like reactions are sometimes called "pseudoallergies" or "anaphylactoid" reactions. The "allergic" reactions to i.v. contrast agents are that type of reaction. The mechanisms of "pseudoallergies" can be pretty diverse. Some of them are due to release of histamine and other substances from mast cells that get triggered directly by chemicals in the infusion. Other times, material in the infusion can activate the complement system, causing what looks like an allergy but really isn't.
One indication that the reaction to Taxotere and Taxol isn't a "real" allergy is the fact that it often occurs with the first exposure to the drug. That wouldn't happen if the reaction involved traditional immune mechanisms, which require prior sensitization and production of antibodies. The "allergic" reactions to Taxotere and Taxol are also weird in that they often subside if the patient is given more antihistamine and the Taxotere infusion is slowed down. I've read on these boards about women who had a reaction with one infusion and didn't have any reactions after that, even though they continued to get Taxotere.
This matters because it means some patients who have reactions to Taxotere can continue to receive the drug if they get a more aggressive pre-med cocktail and are monitored very carefully. That was one option deecsw was offered, but her onco said there was a 50/50 chance she'd react again. Not a fun prospect.
otter
Note added in edit: I just saw LizC's post. She is proof that the reaction can occur with the 2nd infusion and be even worse than it was with the first! I wish they would get this figured out.
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LizC-So sorry to hear that you too had a bad day. I have to say that the experience scared the heck out of me. Fortunately, my husband and son (my 7-year-old, whom I brought to the office for the first time to put at ease about my tx) had gone for a drive when my reaction took place. I was fine when they returned. I was in complete shock that this had happened, considering how well I tolerated the Taxotere during my first tx and the three weeks after. I am nervous about the AC regimen and hope that the S/Es are no worse than the TC were. No mouth sores at all (knock on wood), no bone pain, just some GI issues. My onco has told me many times that the likelihood of having any heart-related S/Es from the AC combo are very low. In fact, he says that the dosage I will receive in my next 3 txs is half of the amount that has been shown to have only a 1% chance of causing heart problems. I also read about a study done on this site comparing TC to AC, and none of the participants who took the AC combo had any heart-related issues. I know that many women have taken Adriamycin without any problems, so I pray that we will be two more!
Thank you Otter for doing the research on this topic. I, too, wish they would get this figured out!
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Otter there is a good bit of fact in what you said. They did prep me with Benedryl first and then after the reaction they gave me additional steroids and Tagament and more benedryl.
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Jisman,
I will definitely call my onco's office staff tomorrow and ask them to call Aetna to see if they are willing to cover an Abraxane and Cytoxan combo. Perhaps if they told them that this is my only option they would cover it, but being that I am having the MUGA, if it shows I can tolerate the AC combo, I am also sure they will not approve the Abraxane.
I have to ask!
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Thanks DEECSW , This board is great I know this sounds strange, but in a way I am glad I did go through this alone. We can compare notes. Thanks Otter for doing the research. Everyone here is so helpful. Great group of ladies!!
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Liz, as you can see, I am also wide awake despite the long and traumatic day. It's definitely the steroids. I am wondering whether I should take another antihistamine before going to bed. I am nervous about another reaction, but I figure it would have happened already if it was going to at all (the reaction took place at about 10:30am.). Do you think it's safe to take a Claritin?
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They told me o take Benedryl tonight do you have any?
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My reaction was about 1:00 pm .
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I have some Children's Benadryl and will take it now. Hopefiully, it will also help me sleep.
Nighty night. Hope you can get some zzzzs.
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Hey Liz and Deecsw - So sorry you are having to deal with these reactions. I had a reaction (hives) on my second treatment, but they were able to control with benadryl for future treatments. Just hang in there. I just came home from my last treatment and I got to sign the breast cancer blanket on the wall! I didn't know whether to cry or laugh. That day will be here sooner for you then you know. Hope things get better.
Karen
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Kfalls, I had hives on days 3-5 of my 2nd TC cycle, too. They were mostly on my arms, with a few on my chest and back. The weird thing was that I never had any reactions during the infusions themselves; and that one bout of hives was the only one I had. They never came back.
One thing that I noticed was, in addition to the Zofran and Decadron in my i.v. and the oral Decadron for the following 2 days, I also got Zyrtec in my i.v.; but that was changed to Zantac after tx #2. I'm pretty sure that was the case, but I never heard why the change was made. Maybe it was because I had told them about the hives, and they thought Zantac was a better pre-med. Who knows....
I'm glad to hear you're done, too. And, to everyone: things DO get better!
otter
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Sharon S, glad to hear things are getting back to normal for you. I was doing well during the first couple of treatments to keep up with exercising, eating well, etc. but all that flew out the window as more tx's went by. And I like the idea of your hot flashes watering your hair! I think I'll adopt that one.
Otter, thanks for taking time to research and explain things; I've learned a lot from you.
Michele
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Forgot to add that I'm sorry that some of you are having such rough reactions to the tx. I can't imagine how scary it must be. Keep us posted on what your next plan of action is...
Michele
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I haven't been by in a while. We got home last night after traveling to RI for my daughter's college orientation. I held up much better then I thought I would. The first day was from 9am til 8pm; the second day from 9-4 then off to the airport. I got up this morning at 7 and went back to sleep until 10 which I never do. I am just so happy I got to go.
So sorry some of you have had bad reactions to chemo - I hope the change in what they give you helps. I had almost no reaction to treatment #2, just a bit draggy and of course that lovely taste in my mouth. Next week is #3. Otter - so happy you are done!!
The redness on my breasts is almost gone after 3 weeks on antibiotics and I got the ok today to stop taking them,
My hair is gone. I have not walked out the front door without my wig on. At first I found it uncomfortable but after playing a bit with the adjustment tabs it is much better and most of the time I hardly feel that it is on. I don't think anyone at work even knows I am wearing a wig (for that reason I never cut my hair shorter). My kids laugh when I walk in the door and announce I am going to take off my hair. They know to call ahead if they are bringing a friend home. I walk around the house with nothing on. My head that is haha..... I don't like the bandana's or sleep caps. I find they make my hot.
Glad to be back chatting with you all.
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I'm getting ready for tx 3 on Monday. The second round was somewhat easier to start but then everything got a little more intense. More headsores, more acne, and of course, no hair. This last week I've been stymied by terrible fatigue. NO mental energy or motivation and deep tiredness. I have still managed to get to the gym each day and I think that has kept away any pain issues. I sort of force myself to go out for a few hobby related gatherings just so I don't lose my place in those groups/classes. I guess that's good for me because I have lost the art of purely social, lighthearted conversation with "normal" (non cancerous) people. I'll just have to deal with that down the road when I am feeling differently about this whole thing. Don't know what to expect for Tx 3 on Monday. At least that will be my halfway mark for chemo before doing radiation. Wishing the best for all of you.
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Hello Ladies
Tomorrow is Tx 5 out of 6...Otter thanks for always remembering the schedule. I am getting excited that I only have two left...and after tomorrow only one more YEAH. I have my bilateral mastectomy and recon in August. Things are finally moving on. I do not write that often but I do read every day. Thanks for all the support.
For those with tx this week...I hope your week is uneventful !!! Good Health to All.
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Hi
I too have tx 3 of 4 on Monday. I am looking forward to it because then I will only have one more. While nothing was unbearable, I just felt out of sorts for longer after tx 2. And of course, the hair. I have been going with nothing on at home. It is so much more comfortable and so much cooler. I live in Chicago and it gets hot!!.. I wear my wig at work and that is fine. I don't want to deal with the baldness with all the people. But otherwise, I prefer nothing at home or a hat outside.
Thanks Otter for all your research. You are terrific.
Question: I don't think I lost more hair after tx 2 and unless I am crazy, I think I have more fuzz on my head than I did when it was first buzzed. Does anyone know if hair falls out after tx 2, 3, and 4 or does it stop falling out from the scalp after tx 1. It probably doesn't matter, but it would be nice to know I am on the way back. This baldness really bothers me.
My daughter in law is due to deliver her second baby any day. I will be going over there to help or to stay with the 2 year old when she goes to the hospital if her sister can't come. While the thought of a new baby keeps me focused on positive things, I am afraid that my beloved 2 year old granddaughter might see my bald head and be scared to death. I would keep a hat on, but what if she pulled it off. I just can't wear the wig all the time. It is a pain in the ass.
Silly things to worry about......more important to focus on beating this thing.
Glad you all are here.
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Susan,
The your 2 yr old grandchild won't mind at all.. my 4 yr old nephew just felt my head and asked where my hair was then he just gave me big hugs it won't scare her. Don't worry she love you not for your hair.
Tomorrow I see my doctor and I'll find out what treatment he will change me to. Thanks to all here for your support.
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