Anyone on just Taxotere and Cytoxan?
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Hi all - Sorry to hear about the trouble with ports....I still have mine, I guess when I go back to the surgeon in Aug he will take it out. I had it flushed the other day and have blood work for the hormone check the end of July and they can use it then.
Tigwin - thanks for the tip about Vit E, I will give it a try. I finished the first prescription of effexor, but decided it wasn't working and I think causing another problem for me....I got it refilled yesterday, but decided this morning nope I am not going to take it anymore. I had talked to the NP about it and how it wasn't helping...she said to up the dose, but I really don't like the idea of taking it anyway. Actually today my flashes have been better....so who knows?
I am going topless most of the time down....I took a picture to put up, but I still look bald b/c it is so light...I want to hope blond...but I think it is gray...oh well.
Three rads to go!!!
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Otter and Karin - I had some swelling in my lower legs and feet and hands just before tx4. I generally do this in the summer when it's really hot (and it's been 90+ for I don't know how long), but I have stayed inside more this time than normal. I also had slight swelling in my lump lower arm. BS said to go back to the LT (who I called Tues and still has not returned my call) and have her check it. It was gone the next day. I really think I might have just overdone it preparing for Beth to come (did a bit more cleaning than normal). I also began having some tingling in my hands and lower arms just before tx4 and it continues. Kind of like ants crawling under my skin. Onoc put it on the taxotere and asked if it was a problem. I can flex my hand and it goes away and about the longest it's lasted was about 1 minute.'
Otter - my lt released me once I had full range of movement back, telling me to continue the exercises and call if I began to have problems with I started rads.
Sandy, my knees are weak, but I'm blaming it on sleeping too much. From Friday afternoon until this morning, I've only be up about 8 hours - have been absolutely exhausted. Did more moving and walking today and it seems better tonight. I hope yours is the taxotere and not arthritisis
Went out with dd for a ride this afternoon, and sitting in the car I realized that the hair on my legs is growing back. Hair on my head started growing about 2 weeks ago - thickening up, the front no longer sticks up, but everything else on top is straight up and all different lengths.. I'll take the hair on my head, but I really would have liked to get throught the summer with no shaving.
Karin - I used my dh's beard trimmer (it was that or the dog 's) and he must have lost all the guards except the one we used. My hair was about 1/2 in long. It stood up on the top, but laid down on the sides. I usually wore a ball cap, but occassionally wore a wig. I didn't find any discomfort with either.
Tigwin - please keep up posted about your surgery. I will be contacting you as time goes on. Thanks for the offer.
Lee
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Lee,
It's so exciting to hear about hair regrowth regardless of where it is on the body. When was your last tx? I was looking all over my body today. It's the first time I've even hoped to find any but I have to agree about the shaving, plucking etc - don't miss it at all.
You're probably right about the knee and inactivity. I haven't been sleeping as much but I'm pretty immobile. I certainly have plenty I could do but there's very little motivation. On second thought, my dd, her dh and the 3 grandkids are coming later this week. That's motivation. I'll try tomorrow.
Sandy
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Sandy, my last tx was Wed., but I was able to see growth about 2 weeks ago. I've always had thick, coarse hair that grew like crazy. I was surprised to see it and was afraid it wasn't true, but when my kids said I was getting hair, I figured it wasn't my imagination.
I've been more active today and my knees have gotten better as the day goes on. I hope I'm almost back to normal tomorrow. Usually Fri/Sat, or Sat/Sun or my bad days.
I know you'll enjoy having your family visit. My stepdaughter visited last week. I was skeptical (she's had problems and has been in rehab and has been dry for 10 months - we're so proud of her) - our visits usually aren't pleasant, but this visit was fantastic. She's coming back in August to surprise her dad, and for the first time, I'm actually looking forward to it.
Lee
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OK, gang, here's a TC schedule for the next 2 weeks:
Week of June 30:
Mon. June 30--Senora (#6-done!), collector (#3), SusanDL123 (#3), katiesmommy (#3), Stickerlady (#2)
Tues. July 1--deecsw (switched to AC, #2 of 4 dd)
Wed. July 2--Lenny (#4 of 6 dd), Boo307 (#3), VBG (#2)
Thurs. July 3--robink (#4-done!), rogam (#3), Debbiem425 (#3), judianna (#3), ggrose (#3), youlooklikeyouneedabeergirl (#3), BBLady (#2)
Fri. July 4--
Week of July 7:
Mon. July 7--
Tues. July 8--kathy (kathy's_hubby, #6-done!), craftygal (#4-done!), SharonF (#4-done!), Genieruth (#4-done!), karebear43 (#3), danismom (#3), JulieC (#3), Gina_M (#1)
Wed. July 9--MsKarin (#3)
Thurs. July 10--cbme123 (#4-done!), Rosario (#4-done!), SherriM (#1)
Fri. July 11--lilwebb (#4-done!)
Now, I just know I've missed someone or have a date wrong, so please remind me.
otter
(Edited to add Dawn/deecsw, who was switched to AC dd because of a bad reaction to Taxotere. LizC was switched to AC also, and she'll have tx #3 [AC #2] 3 weeks from last Friday I think. Correct?)
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I have tx 3 of 4 tomorrow. I am trying to really push water today and forward. I don't think I really did that for tx 2 and felt worse because of it.
As for hair, hair, hair. I, too, have (had) thick coarse curly hair that always grows like crazy. I have noticed this past week that some of the buzzed hair that was left seems to be a little bit longer....maybe 1/8 of an inch instead of 1/16. At first I didn't believe it , but I think it is true. Anyway, it will probably fall out again after this tx. Who knows?
Hang in there everyone and thanks for being there.
Susan
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Lee,
I am so happy for you and your stepdaughter. It's even more exciting than hair regrowth and you know how exciting that it. She's lucky to have you.
Just talked to my dd and sister and I'm feeling rejuvenated. I think my d(dear)h and I have been together a little too much over the last few months. He's retired and I've been on sick leave so it's been day in and day out for the first time in 38 years. I guess if we can survive this, we can survive anything but enough is enough. How mental this whole scenario is!
Sweet dreams to all,
Sandy
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Sandy, I know exactly what you are saying about your dh and you being together too much. Mine is also retired and I've been off since March. He's been anxious for me to retire - I'm eligible this year, but I've been rethinking it. I do understand where he's coming from. We've been together for 5 years and he has parkinson's so our time to do things is limited. However, we have summers (I teach) and holidays, so I'm thinking probably at least 3 and more likely 5 years. One of the reasons she came was to entertain him so I could have a break. He has been soo attentive, sometimes too much.
Boy look at all of you are finishing in the next 2 weeks. Let me tell you, even though you have to work through the se, it's a great feeling!
Susan, I thought my hair would fall out again, but it's still going strong. I'm keeping my fingers crossed.
Good luck to all who have tx tomorrow. I'll be thinking about you.
Lee
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Hi everyone. Thank you Otter for keeping track of everyone's tx schedules! Could someone enlighten me as to the abbreviations many of you use on this board? I know the AC and TC and tx, but there are lots of references to people (doctors, relatives, etc) that I'm not familiar with. For example, dd, dh, BS, LT, etc.? Thank you.
Gina_M
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dd=dear daughter
dh=dear husband
BS=aah...breast surgeon, thanks, Otter
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BS (cap letters) = breast surgeon
LT = lymphedema therapist
PT = physical therapist
NP = nurse practitioner
PCP = primary care physician
PS = plastic surgeon
ds = dear son (what's "dear sister"?)We've got you started, anyway!
otter
Edit: Has anybody noticed that sometimes this new format causes odd changes in fonts and colors? I just tried to use the "unordered list" function for the list of abbreviations, and it put them all in a line with commas in-between. When I un-clicked the "unordered list" button, it put them in a list but they're in a smaller font that's greyed out.
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Day 7 of tx 2. Hello to all.
Otter- thanks for the updated schedule. It sure looks like we have a lot on folks getting their last tx during the next few weeks. Yea for them!
Tigwin - I will second the pillow helping with the port pain. It has been helping a lot, although I still have quite a bit of bruising around the site after all this time.
I made it through the reunion weekend. I sure was wishing it wasn't the weekend of the joint pain and fatigue, but it was still nice to see all on my classmates again. I will really be looking forward to the next one. I am feeling less achy today and am right on schedule with my last tx, so I am hoping I will have a few weeks of "normalness" before the next cycle.
I am a little jealous of all of you who are wearing scarves and turbans. I am still working - as a Financial Advisor - and can't bring myself to meet with clients in a scarf. So it is wigs for me during the day. It is very liberating to finally get home and get topless.
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The new format no longer provides our location info, which I appreciated seeing.
Otter: Do you know how to contact those who made the change and ask about it? I can't figure out how to contact anyone who runs these forums.
I'm almost 10 weeks out from last tx and expect to be wearing my wig for awhile (partly because I prefer to cover my hearing aids, which I've used for 30+ years). It doesn't look as if my hair has grown much in the last two weeks although I'm using the nioxin treatment.
Wish all of you having treatments uneventful sessions and minimal SE's.
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beegirl, there are a couple of ways you can try to contact the forum moderators about the changes.
One way is to go back to the "forum index" page and scroll way down to the bottom. The next-to-last forum deals with "Comments, Suggestions, and Feature Requests." Within that forum are some "threads" (now called "topics") on the site changes. You can either start a new topic with your question, or you can post to one of the existing topics. Right after the format change last week, the moderators and/or system administrators were making a lot of corrections and were sometimes posting to that forum. I haven't seen much activity since then.
The other way you could try to contact them is via private message. I don't know whose screen name to use. One possibility is the forum moderators: Moderators_Tami-Melissa Another possibility is the "tech team": bco-admin.
[There is a very good chance that the text formatting of the stuff I just typed in the previous paragraph will be messed up. That's another problem with the "improvements" in the formatting.] Note added in edit: Oh, ha ha. It's really messed up. I didn't use any italics in that text, or any special text color; and I didn't insert any carriage returns. All that junk just appeared there.
Good luck. I've sent a pm or two, and even though I never got a reply, I think someone was reading my suggestions. I know they were reading the posts on the Comments & Suggestions forum, at least part of the time. I agree with you--I liked the additional information by the avatar. I think you can still find it if you click on the screen name and go to that person's personal info page.
otter
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I miss the location info too. I wonder why they took it off?? Those of you who say a pillow helps with the port pain--are you lying on the opposite side from the port? I could see where that might help keep it from sliding over and feeling weird. I couldn't even begin to lie on the side it's on--if I even slightly have pressure while scrunching my shoulder, look out. Oh well, life goes on.
I pulled a Britney today, girls. I was going to be like Otter and hang onto what I could, but I couldn't stand the mess every time I took a shower or took a hat off! Tiresome. My DD will be here in a day or so and I told her she has to clean up where I left odd bits & pieces. I was upside down over a towel in my bedroom just buzzing away. DH did the initial boy-cut trim, but I'm not sure I'm ready to go Boldly Baldly in front on him just yet. I have a magazine that has pictures of celebrities who shaved their heads...it showed Demi Moore, Natalie Portman and Britney Spears. Unfortunately, my head most closely resembles the Britster's, not cute and perfectly proportioned like the other two. All I can say is Thank God for eye makeup!
Happy evening, everyone~
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catlover,
At least we DON"T look like this, LOL
Enjoy the day, Karin
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Karin...thanks for the laugh!! That really cracked me up!
I saw some recent posts re: ports. I had my last TC tx on June 5 and I'm now in the middle of rads. Expect to finish those up on July 22. During my last TC tx, I asked my onc nurses about getting the port removed, they said the docs like patients to keep them in for a year.
Has anyone else heard that? I want to get mine removed as soon as I can. It doesn't really hurt, but my bra strap rubs up against it and so does the car seat belt. Plus, I was told I'd have to have it flushed every 4-6 weeks.Thanks
Sue K.
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Just when I am feeling great I have my third treatment on Thursday. I even stayed at work all day today. Looks like there are a bunch of us on Thursday - do you all get shots the following day? I have to go to the hospital for mine since it's the 4th of July and my chemo place is closed.
I remember seeing something about exercises to stretch our chest wall muscle (what is it called now that it's over our implants)? I feel tight and would like to loosen up. When driving I find making a U turn and backing up is tough. Does anyone have good exercise suggestions?
I am getting used to the wig. I can throw it on so easily now and hardly feel that it is on. It still feels weird if I turn to look at someone from a strange angle. It is rainy season here so I have to be careful not to get caught in a downpour. Getting ready for work is a breeze
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Debbie - I have my 3rd treatment on Thursday too. Since the clinic is not open on Friday, they are going to give me the shot on the same day. I'm not sure why they decided to do it that way since nuelesta isn't as effective when given with the chemo. I'm wondering if the SE's will start a day earlier as a result. I guess I'll just have to wait and see. Has anyone noticed how much they charge for the Nuelusta shot? I almost fell off my chair when I looked at the initial billing! How can a small vial of anything cost that much? My onco is in my PPO so it will be interesting to see how much the insurance carrier really pays when all is said and done.
I was "playing" normal the past week. Spent most of the week getting ready for the graduation party for DD on Saturday then went to a baby shower on Sunday. Despite a small torrential downpour, the graduation party was a success!
I have to get ready for work now. I have to admit that the routine is much easier now. Shower, sit under ceiling fan for 2 minutes to dry my peach fuzz, flip on my wig (AKA very shiny raccoon) and brush. Brush teeth, swirl and swallow Nystatin. Apply foundation to cover up the dark circles under my eyes and I'm off! It's hard to believe how much my routine (and life) has changed in 4 months!
Hang in there everyone!
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Sue K - I had my final TC last week and was SHOCKED to be told the same thing about my port. Keep it in a year, flushed every 4-6 weeks. I had never asked and just assumed it would be coming right out.
My seat belt makes it hurt, too. The nurses did give me a padded cover (advertisement for Neulasta on it) for the seat belt so that helps. I've gotten used to all sleep positions now, but don't like the feeling when my shoulders are scrunched.
But I think the worst part is the reminder that it's still here; the fear that I might need chemo again.
Michele
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ggrose - I did see how much they charged for the neulasta - more than the chemo treatment. My insurance pays about half.
Lee
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Just checking in. Today is Day 5 post Tx # 1. Yesterday morning I had a little spell of queasiness/faintness. Think is was mainly that my BP was too low--112/61 and all that water had flushed all the sodium and electrolytes out. Whatever. I took a 3rd Zofran, and laid down and watched old movies. It quickly resolved and I felt good the rest of the day. Just scared me. I think I will not take my BP meds at night like I usually do, but wait until after I wake up and check whether they're really needed or not. Maybe I don't really have hypertension--I just need to drink 2 quarts of water a day?
Today I feel almost normal and am off to get a blood test.
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I had Tx 3 yesterday. Each time I have had a different experience and it hasn't always been good. This time the nurse who drew the blood from my port prior to seeing the onco, pulled out the tube when she was done. I looked at her and told her they usually covered it over and used it for the infusion. Turns out she thought I was just in for a blood draw. So then I needed a second stick later on and it hurt a lot. I am finding that I have to watch and double check EVERYTHING! On another topic. My shaved head is sporting longer stubble. It appears to be growing since last Monday so I have stopped using the lint roller just to see what happens. My guess is that this will fall out, too. It's gray but that's expected since I've been coloring my hair for years.
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Karin, just saw the lovely Mrs. Conehead pic--you're right, it could be worse!
I am with you all on the price of the Neulasta shot. DH and I were gaping at the insurance EOB with our mouths open!! Unbelievable....someone is getting rich off these kinds of prices for drugs people have to have.
What is the deal with people having to leave the ports in after chemo? TN-Michele, are you going through rads also? Maybe that's the thing that makes them want to leave them in....but who knows. I'll be asking my onc at tx #3 so I'll know what to expect.
I think this was addressed waaay back, but is this post-nasal drainage one of the fun s/e's? I forgot to take a Benadryl the other night and woke up all choky with the drippage down my throat. That, and weird pain around my eyeballs. Just wondering!
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I was shocked at the price of both the chemo and the shot, which were about the same. Lee, I think when you say the insurance pays half, you mean that the doctor accepts that much and you don't have to pay half. I had a co-pay of $20 per visit, which was really a bargain. No wonder health insurance gets more and more costly! I really feel for those who don't have any coverage or just minimal.
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Hi All,
Catlover - I had a lot of drip along with my nose being raw inside so blowing was a bit painful! My nose was very dry on the inside and I started using a saline spray.
I did not get a port for chemo and am very grateful it does not sound fun.
Today is the day I take a shower and expect to have massive hair fall out! I have been putting this off and trying to work up my courage! I hope that I will look like Natalie Portman....but more likely will look like Brit...perhaps I should have bought a pink wig!
I told my DH that in every other difficult time that I have been through, including my first dx of bc, I have been able to find something positive to take away from the experience. I have found life lessons to be learned and opportunities for growth. This is the first time in my life I am really struggling to find the "opportunity for growth" in all of this. My resilience is really being put to the test this time. I try to put on a brave face for all of those around me, especially my kids, but it is so hard some days.
I go for my second tx tomorrow and hope that it will be smooth. I will then only have 2 left so that makes me happy!
Wishing you all a great day!
Valerie
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Valerie,
I'm doing the same thing....trying to "learn the lesson" from all this. I can think of lots of things I need to work on, but I guess I need to figure out where I go from here! I don't think any of us go through this for no reason at all.
Guess I'll deal with the scratchy throat from the drainage (I hate that word)...a shot of bourbon would help temporarily! My onc says she tells all her patients one drink a day is allowed. So I have to wait til DH is home and have cocktail hour with him.
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beegirl - that is what I meant. I have a $25 copay, so I really feel like I'm getting a bargin. That's also the reason my dh and I got married. He was medically retired and could cobra his insurance at $800 per month,but didn't. He has pd with dbs (deep brain stimulators) and had to have his batteries changed (at a cost of $20,000 each, and he has 2), He hates this story. ok, we were planning to get married eventually, just bumped it up. (I like the story, along with saying that I have a battery operated husband that I can turn on and off with a remote control).
Good luck to all who have had and have treatments this week,.
Lee
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I am now 4 1/2 weeks out from my last TC treatment. Each week I felt better, although it did take me about 3 weeks for the neuropathy to leave my hands and feet. I started radiation last week and have 7 down and 23 more to go. So far, so good. My hair has been growing back for the past 5 weeks or so, now I can see what the color will be (and hopefully stay). It looks like it is going to be a very light blonde, I was a dark blonde before starting and losing my hair. Although I kept it dyed to a light shade .. just think of the savings in hair color! My nails started changing colors before the last treatment, 2 fingers on my right hand had very bruised looking nails. They now look like they are really looking to fall off, so we'll have to watch that. At least they are not painful. My left had has 3 nails that are quite funky looking, like they have a "pocket"underneath them. I am really hoping I don't lose any. But time will tell. I have been dieing to get my nails done, but figure it isn't worth it if they are going to fall of for petes sake.
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Hi Girls,
Had my first DD AC tx today (1 down, 2 to go). It took 2 sticks for the nurses to find an acceptable vein (since I'm the gal who refuses a port). All went well. I was pleased to discover that the infusion itself took about a 1/3 of the time that it did when I was given Taxotere. I was given Cytoxan right after and I was done with everything in about 2 hours (this included pre-med IV).
Started feeling mildly nauseous despite having the Emend about 3 hours after the infusion. I took a Zofran, as recommended by the nurses. Feeling better now and will take another Zofran before bed. I have been drinking water like a fiend for the past 48 hours. I was told that my urine would be red/pink for at least a day, but it stopped after my third trip to the bathroom today. I think I am drinking so much water that I must have flushed it out already!
Hoping tomorrow is nausea and side effect-free. Taking an acid controller and stool softener every night, it helps! Neulasta shot tomorrow afternoon.
Hope everyone is doing well and is S/E free!
Dawn
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