Taxotere, Carboplatin and Herceptin
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Crawling out of the Hole...
Well family, it's been an interesting 4 days.
Chemo #3 started out normally with a slightly early arrival, 7:45am for an 8am appointment.
It was unnaturally crowded in the waiting area. After I checked in and sat down, lots of women started asking me about my head gear. I decided to go wigless and wear one of the luxurious 100% silk head wraps I got from www.franceluxe.com This incredibly generous company provides one free "It's a Wrap" through their GoodWishes program for any woman going through chemo. The wrap is a little too large for my head, but I wore it anyway and it looked fine.
Every woman who asked me about the wrap was a "newbie." So I spent a large part of the morning giving them my tips and hints, all of which I learned from other survivors who informed me prior to my treatments.
The sheer number of new women starting their chemo journey that day was a little depressing. Then it became annoying as I realized they were taking the newbies in first. LOL!!! So it was almost 930am before I even got called back!
For those keeping track...I lost 5 pounds the first week of chemo, gained all five back, lost two, and have now gained 1. Maybe I oughta lay off the Stouffer's for a minute? Nahhhh....
Anywhoo...I didn't get Nurse Joanne although she was on duty. She did come by to visit though. I got Nurse Susan, which turned out to be a blessing because she is a 4 year breast cancer survivor! AND she had the tummy-tuck procedure I'm seriously considering for reconstruction, so it was really nice to talk to her in depth about her experiences.
BFF Zulema was awesome going to get snacks and real food. Ok, explain this to me. WHY would you put vegetarian chili on the lunch menu for people having chemo? It's yellow with vegetables...think about it...yeah...not so much. *smh*
Mom brought big beautiful strawberries which complemented the chocolate pudding VERY well! That was a winner!
Speaking of winners, I did NOT win Scrabble. In fact I lost. Mom came in 2nd, and Zu won. The only dirty words from me were RIDERS, and BULGES. LOL!!! I need more practice...
Given all the newbies and a nearly full chemo suite (31 patients can be getting chemo at once), I did not get my pre-meds until 11:51am!!! It was a LONG day!
I talked numbers with my oncologist. Right now my risk of recurrence are somewhat hard to predict with the advancements that treatment with Herceptin brings, but he estimates it to be 30-40%. That may drop to as low as 20% if I consider having my ovaries removed, seeing as my cancer is estrogen-receptor positive.
My current 10-year survival rate is 70%, which again can be improved when the 5-year #s for Herceptin start to come in. I am a part of that important five-year grouping.
The new advancements in treatment are heartening, so I take the numbers on advisement. Having chemo first also makes the numbers harder to predict. And of course, lifestyle, overall health, stress, all play a part in improving my survival and reducing my risk of recurrence.
BFF Cathy came up to stay with me again and I decided to go see and have dinner with my Dad. Dad & I have vigorous disagreements over my chosen course of treatment/cure and it has made conversations difficult. But he is coming around and I think being able to see me do so well (Praise God!) has helped calm his fears for me. So we all went to BoneFish Grille and I managed to fall asleep at dinner! LOL!!!
Yes, folks, the fatigue is real! I have been far more tired this time around. This is not helped by the buzz the steroids give you. My body is still confused, but I'm managing it better because I know what to expect. So in some respects this process gets easier.
I realize that I need to nap or rest after every energy-demanding task. I get up and make breakfast. Rest. I brush teeth. Nap. I take shower. Snooze for real. Get dressed. Sit in chair for a minute. LOL!!! So my normal 40 minutes to get ready and out of the house has now expanded to 90 minutes. It's all good...I just know now!
Today I took myself to get the Neulasta shot. Came home and crawled into bed and actually got some decent rest right into the afternoon. Just up a few times to pee and eat. I tried to stay awake through the afternoon just so I could try and guarantee some sleep tonight. We'll see.
All this to say, I'm crawling out of the hole slowly. I plan to take tomorrow off and do laundry and get myself ready to return to work later this week. BFF Steph will resume driving me to the train station on Wed & Thurs. That worked out really well last time. By Friday, all meds should be out of my system and I should be back to normal energy levels. I am blessed and so grateful that my experience thus far has been DOABLE!
Going to go lay back down...
Alaina
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Alaina, you are doing great!! Keep marching on!
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Ladies, is anyone (or has anyone) experiencing the Taxotere tears?? For over a month now my eyes have been constantly tearing. It's been the worst SE since it's constant. My Onc sent me to an Opthamologist who tried to dialate the little drainage canals in the corners of my eyes. It didn't work. Now they say I have to see an Occular Plastic Surgeon to have small tubes put in to drain them. My thing is, I will have my last TC (#6) this coming Friday....the 29th....and I can't get into the OPS until June 10th. I know it won't resolve right away on it's own but if it were you, would you get the tubes put in?? Or just wait until it resolved on it's own? I'm not sure I want to have it done if it would resolve on it's own say 2 - 3 weeks later, you know? It's driving me nuts but I just don't know if I want to have it done.
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Yep Kristine! The eyes run constantly!! I would wait! You are so close to the end. Just wait it out for a few weeks. It will probably go away once tx is over.
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I had one eye tearing all the time. SOOOOO embarrassing. Looked like I was crying all the time--I can do the real thing very well, I don't have to look like I'm always sobbing.
Anyway, after a couple wks mine went away. My daughter asked about my problem at an opthamologist appt she had--dr suggested warm compresses.
Try that before surgery!
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Kristine~ I had that after treatment #3 I believe and it was horrible. I had red eyes from the tears and of course my oncologist wanted me to go to the opth. but I just waited. It went away and I was grateful for it because it was something that everyone pointed out to me like I didn't know about it. Good Luck on #6.
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Well, I go in for treatment #4 tomorrow at 8 am. I am sure I will be there all day again like usual. 8:00 labs, 9:00 onco visit ( I always ask A LOT of questions, so it takes a good hour). Then onto flushing of the port and hooking up the IV line and then pre-meds for 2 hours (so I won't get an allergic reaction to the tax like the first 2 times), then chemo/Herceptin for the next 4 hours. I usually get done at around 4:30-5:00. Makes for a VERY long day... I mainly just watch tv, read a couple of magazines, eat a packed lunch, eat the snacks provided there, drink LOTS of water and use the restroom every 20 minutes or so. Tomorrow I am going to start a journal of my total cancer experience from the day I found the lump, or rather, my husband found the lump. My hubby is with me most of the whole time during my treatments, sometimes he runs a couple of errands. Last time, he brought one of those camping chairs with a recliner from home and slept!
Kristine...Congrats on your last chemo treatment this Friday! I haven't had teary eyes, only when I cry, which is everyday. lol
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ccbaby..I will be thinking of you tomorrow, it is a long day isn't it. I always have such a long wait in the waiting room, then see doctor, then wait some more, then get into chemo room and wait a little more, but my premeds are only like half an hour..... then herceptin for about 30 min, Taxotere for about an hour and then Carboplatin for about 30 min, but somehow it still seems to take a long time. Luckily I have never had a reaction to anything. oh, the journal is a good idea, I have been doing that all along, I have a book half filled now, starting with the day I went in for the mammogram, after I had found the lump. I waited til about 2 weeks after I found it to go to the doctor because I was always SO lumpy that I wanted to wait until after my period to see if it went away,,,,,,it didn't . The journal will help us to remember all the little things we will forget. I did one for each of my pregnancies and am so glad I did, so I can remember my sons' deliveries, etc.. you do forget a lot of the little things once its over.
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Yes, that is why I feel I need to do a journal, because I NEVER want to to forget this awful experience. Makes a person appreciate all the little things so much more. After I get done with all of this, if I feel like I am having a bad day about something stupid, I will just get my journal out and remember it can't be as bad as this is right now.
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I have gained so much weight in the past 3 weeks that my onco nurse noticed it right away this morning. She said it is caused by the hormone component of breast cancer. She is referring me to a nutritionist to get a handle on the diet. She said it will take very careful management on my part. Great.
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Lisa:How much else are we suppose to give up. Our looks our energy our pain free life. I can not swim this sumer which is my favorite thing to do. Also no sun. Like thats going to happen. I have a pool and a convertible and a huge demanding garden. Oh and my nails are being held on with crazy glue. Oh did I mention that I have no hair to speak of. I am 6 weeks out and no sign of any real hair. My heart pounds and I get out of breath. I have gained 22 pounds during chemo and its hanging on. I also swell up so much that I can barely walk, Bitch fest. Yikees! I need to write out all my blessings too. But not today. They say the key to happiness is gratitude. I am grateful for this thread.
The tear duct issue can be serious as untreated it can be permanent.. I would follow the advice of your doctor..
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Bold, I am with ya today! Bitch on sista!
Oh, And they also said I have developed high blood pressure. My blood pressure used to always be so low they always asked me of I was really alive.
Lisa
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Bold~ Bitch away. We know you are grateful
Lisa~ Geez you think you could get a break maybe herceptin is playing a part in this also.
Christy~ I hope today goes smoothly.
I have been slowly getting rid of yuck mouth but the taxotere nerve pains have raged on. I can't stand them especially when I am trying to go to bed and they are just shooting thru my body. Go away nerve pain you stink. I have to go back next week for an Echo in hopes that it has came up some. I was at 46 last time but the cardiologist stated it was because of my pulse rate. My pulse rate is not much lower so I hope it's better. I have started taking CoQ10 daily and I have made myself start doing some kind of exercise daily.
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Bold and Lisa, Sometimes it just sucks!!!!!!!!!Yesterday I was feeling really good until I saw a picture of myself at a wedding that a friend had posted on FAcebook for the whole world to see....ugh!!!!!! I hated it. Wow, I was in a mood for the entire morning! Sorry you are feeling so down but sometimes the only thing that helps is to vent! That is why we are here, sisters.
Love,
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Wow...alot of new campler here....sorry for to read that! My computer has been down and really busy at work...just dropping in to give everyone hugs!!!!
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Question re the Neulasta shot - I am ready for my 3rd TCH tx this week. Had the bloodwork today and it was fine, but lower than last time. They said I should get the shot after this one to make sure I pass for tx4 in 3 weeks. I declined and said I would take my chances - she said I may pass without it. If not, I will have to wait a week to let my numbers improve. But I will probably have to have it after the next one either way.
I have read so much about the shot and how much everybody hates it that now I am really scared. I haven't had hardly ANY bad SEs so far - no nausea or fatigue or trouble tasting food. Just some stomach pain which I am controlling with supplements. But the shot seems so scary.
Is there ANYTHING you can do to improve the white cell count number? Diet/exercise/rest/water/vitamins/ANYTHING? Doctor said no but I thought I would ask here in hope......Thanks.
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Amy...I didn't get the Neulasta shot on my first treatment and my white blood cell got down to 300, which is very low and I felt like crap all week and developed thrush and another infection. Since then, I have gotten the shot, which I will be going in for tomorrow since I had treatment #4 today and it has really helped me A LOT. I take Claritin for the bone pain for about 5 days after and I experience no pain at all. The shot is not scary at all. The nurses are great about making the shot as painless as possible, so I am grateful to take it. It is much better than getting deathly sick because of the white blood cell count so low or getting an infection. The onco told me that there is nothing else you can do for it besides getting plenty of rest.
Cakelady...I asked the onco today again about getting radiation. He is still leaning towards me getting it because of that 1 lymph node. he said my chance of no recuurance would improve by 1/3 if I do it. he said that they would probably just radiate the arm pit area where the lymph nodes were taken out and the upper chest area where there are lymph nodes at too. He said I had clear margins, so they would notneed to radiate the breast area. Of course, I will still meet up with the rad onco after chemo for his opinion.
I was there all day today for my treatment again and when I got home, I took a power nap and when I woke up, I thought it was Wednesday morning!!
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It seems as if each doc has their own theory regarding Nuelasta. For my doc, I got it the day following EVERY tx, regardless. Even with the shots, by tx 4, my counts were so low I had to have a transfusion. The Nuelasta did not bother me much, not anything a mild pain releiver could not handle.
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Neulasta and Neupogen only encourage white blood cell production - they don't help the red blood count. In the BCIRG 006 study, TCH caused grade 3 or 4 neutropenia (low white cells) in 66% of patients. With it being that common, one can see why some oncs just treat everyone to prevent it and some wait to see whether you need the medications. My onc doesn't routinely give them for TCH. After my first chemo, I felt extremely tired - just sitting in a chair was an effort - and I got a fever of 100.5. It was due to very low WBC. I had almost no neutrophils. Fortunately I didn't get an infection.
I had to have Neupogen to bring my neutrophils back up and got it prophilactically for the rest of my treatment. The nurse taught me to give myself the shots and I had 3 each cycle. Neulasta is stronger and longer lasting so only one shot per cycle is needed. My onc said that one dose of Neulasta is about the same as 10 Neupogen doses. Amy, if Neulasta is too strong for you, I wonder why your onc isn't suggesting Neupogen. My onc said it causes less side effects.
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ccbaby... You made it through TX #4 yay!!! maybe I will ask my onco about the radiation on Friday. But you have a tissue expander right? the plastic surgeon I went to for the consultation said he would not do implants on radiated tissue because it is not flexible and doesn't stretch well, so it won't look good. I do not have any reconstruction at all yet, so I don't want to ruin my chances of having a good outcome on some implants. I also had one positive lymph node, but they had said that they didnt think I would need radiation unless the margins were close to the chest wall, and they didnt expect that in my case. But who knows, they have not mentioned it since my mastectomy was done.... Lisa 1964 had 2 positive nodes and she said she didnt have to have radiation......
I have never gotten a Neulasta shot, but I did get the Neupogen shot a week after my 3rd treatment. The Neulasta sounds pretty tough..at 10 times stronger than Neupogen..... wow.
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Amy,
I finished my last round on 5/4, I had Neulasta after all 6 rounds, I took Claritin the day of chemo and 4 or 5 days after, didn't have any body-ache. The good thing: my WBC were normal for all 6 rounds. The shot itself is just a small prick, it's only 0.5ml. I didn't have any infection or fever at all. It's worth a try!
Cil
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Cakelady... yes, i am concerned as well with my tissue expander, but if I only get the radiation in the arm pit area where the positive lymph node was at, my onco doc said it shouldn't affect the TE. I will know more after I talk with the rad onco and then my plastic surgeon. I am also concerned about the possible side effect of lymphedema too with radiation, but then again I don't want to have a recurrence either without getting the radiation, so I will really have to weigh my pros and cons with it. It is a big decision.
I would like to see what everyone's onco is suggesting with mastectomy and 1-3 positive lymph nodes and let us know, thanks!
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Hey Ladies-coming back from #5 fog. I was really winded this time around-not nauseated but really wiped. Feeling much better today. #6 is two weeks from Friday! Yea.
I spoke with my plastic surgeon today and got my exchange scheduled for July 21st. Another yea!! I want to ask those who have had implants...saline or silicone? Pro's and con's??
Maggie
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Well Ladies My first radiation treatment is done 15 more to go Couldn't tell the difference when they did Xray from when they gave me radiation. It was quick and painless> Denali and I are meeting Thursday eveving for dinner I can't wait to meet her I am very excited!!!! My Onc told me that if you have a lumpectomy rads was part of treatment Use to be your choice but now pretty much a given. I believe in following every course to keep my cancer away when I am done with this journey I will have went from a 75% to a 93% chance of reoccurence I like those odds alot better! 0 -
Maggie I was told that the saline is as the tissue expander. I did not want that so I am going with the silicone. I sure don't want anything like the expander in my body mine are hard and they are uncomfortable but it's a personal choice.
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I'm having my exchange surgery on June 17th to silicone--really ready to get these hard saline expanders out. My first Herceptin only TX is coming up Tuesday.
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Ladies, I had breast augmentation many years ago and had saline. When I had my BC reconstruction done, I got silicone - HUGE difference. Go with the silicone!! Saline with no natural breast tissue/fat will not feel good.
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I hadn't thought about the fact that these are saline right now-these hard as a brick tissue expanders are the last things I want for the rest of my life. I'm sold on silicone!
Duneoaks: since your going a month before me, you can fill me in on the details!
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Had TX # 3 yesterday, Neulasta today and got home from Tampa about 7:00 PM. Long two days. Moffitt was closed for Memorial Day Monday so they were back lodged for chemo charies Tudsay. I didn't get my "reserved seat until about 11:30! Did a saline and Herpacin drip then had to wait about 1.5 hours for the pharmacy to get my TCH packets ready. That really slowed things down and I didn't get out of the chair till 4:40!!
Met with my ocon and we had a good disucssion about my terrible diarreah problem. She cut back on the carboplatin by 20% for this treatment. She said it is the component that really screws up the digetstive system and this may help. So I'm back on Immodium and Cipro and she's letteing me take Acedopholis supliment the replacement of digestive bacteria and enzimes. It just seems that my body couldn't replace the digestive bactieria fast enough on its own to to counter the se's of the carboplatin! Hope this works. Ten-tewlves days of diarrhea is just unacceptable. It tends to prevent absorption of the neutrients that I need to get back up to 'normal'. Causes dehidration, fatigue and just maks you feel you never want to eat again.
No date set for surgery, but we are shooting for late Auguest. Will have to check with my surgeon's schedule and let him book an OR then we will consult after the completion of TCH the end of July. and re run some of the scans and MUGA tests. Rads temporaraily scheduled for September. Herceptin to continue throug it all.The rads will probably be 5 days a week for 4-6 weeks. That's a lot of travelling to Tampa so we may be able to work out a deal with a local rad center 20 miles from home. My rad doctor can probably do this. That would be a real life saver.
Good news, my breast keeps shrinking and they are now able to get good measurements on the one lump that they've never be able to get before because of the swelling and distention of the skin and tissue. It has reduced almost a full centimetner!
Markers were good. Down in a few areas, up in others. As far as they can tell I only have 4 nodes involved and they are all in the uppere arm so they will go with the surgery.
Mouth sores... I had one that I kept the entire #second cycle. Did the salt water mouth wash thing, but it never touched it. Releif for about 15 minutes. Dr. Minto perscribed "Magic Mouthwash" four times a day and it's looking like a merical worker! It is prescription and has to be mixed by the pharmacy, General ingredients: The usual concoction contains equal amounts of viscous lidocaine and diphenhydramine for analgesia…and Malox or a similar antacid to enhance coating of the ingredients in the mouth. Some also include nystatin to prevent or treat fungal growth…a corticosteroid to reduce inflammation…or tetracycline to prevent secondary bacterial infections. Cherry Flavor. I've bolded the stuff that was used to mix my concotion. Sould be kept refridgerated. Swish after meals or as needed up to 4 times a day. My leasion is where the lower lip meets the gum line under the bottom teath. Just talking or opening my mouth to eat would streatch the area and make it burn and sting. RELIEF!! Yes. $40 per bottle, but my insurance cut that down to $8.61 out of pocket.
Hope all you gals are doing well. I got a pretty sticker on my next appointment sheet with a big gold star... HALF WAY THROUGH!!! Yeah! Drink that water!!!
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Swampy - you are awesome! Congrats on being halfway through. Tomorrow is my third - I'm right behind you!!!
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