Taxotere, Carboplatin and Herceptin
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Wendy...I am so sorry about your financial problems. Is there a local organization that can help you out? We have a local organization in my area that payed one month's house payment and utility bill for me. They are donor sponsored. Also, there is cancercare.com that helps with gas and other things and the Susan G Komen foundation that surely could help. You know about my fundraiser/auction that my friends and family held for me. Can someone do something like that that for you? Also, my co-workers set up a donation box at my work right after my surgery. You wouldn't believe how generous people can be in times of need and how understanding they are. AND, there is no reason to feel bad or be embarrassed about it or feel that you are taking advantage. Having cancer is EXPENSIVE!!! I have missed a total of 11 weeks of work (becasue of surgery and treatments) since January and my huband has missed almost as much to be with me. I have appreciated every donation that I received and sent out many thank you cards. I look forward to the day that I am able to 'pay it forward'.0
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Hi All,
I am seven weeks out from TC (Herceptin through March '10) and my hair actually started coming back in around TCH #5. It is fluffy hair (like a rabbit's fur) and I am not sure if it will all fall out yet again, but it seems to be holding steady so far. I have about 1/2 inch growth including on the top of the head. None of the curls have materialized that were mentioned by so many posters around the boards. I have started going out bareheaded, but I do still get stares because of the shortness of my hair. My eyebrow hair has started to grow rapidly and I can see that very soon I will be able to start reshaping them. My nails never completely fell out, but I could see that they were thin and brittle and I had to keep them really short.
One of my longer lasting problems seems to be the neuropathy in my feet. I have virtually no sensation in my toes and heels. I am a horse rider and it has been difficult for me to be secure that my left foot is securely balanced on the stirrup before I swing my right leg over.I ride a pretty big horse too (a 16.3 thoroughbred), so it was important that I not make a mistake as I got in the saddle. The horse in the photo is 15.2 and a paint - I currently lease him out to another lady as he is too much horse for me while I have been ill.
I did get pretty bad anemia, but the last blood test showed that my counts are almost back to normal. That was the scariest problem because it caused me to be very weak. I was glad not to be working for chemo 5 and 6 (I am a school teacher) because I did not have the stamina to work even part time. Whether a person can work while taking TCH varies widely. My experience was that as the chemo built up in my system it had a cumulative effect, and I was really ill/weak by the last three treatments. Most of the women I met at my oncologist's office had gone on disability for six months and they thought I was crazy to still be at work.
For those of you starting out, or your treatment is ongoing, my best advice to you is to rest as much as possible (sleep for 12 hours+ straight if you need), drink as much water as you can (even if it tastes like tin), and accept every offer of help that comes your way. And, please do not be upset with people who make inappropriate or misguided comments about your cancer; often they feel very clumsy and "put their foot in their mouth" without meaning to do so.
Hope everyone is having a minimally laborious Labor Day.
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Thank you everyone, you are all so nice. We are working on our financial issues and I guess we'll get thru it, we usually do. I went to wisit my Dad today and it is so sad to see him like that. He has Parkinsons and is in a convalescent hospital now. He is really hating his life now. I can't understand most of what he says, but I did get that. He is only 70. He knows what he wants to say but can't get the words out and it is so frustrating for him. He worries about me too. So I just try to let him know that I am okay. At least he has his wife to keep him company, she is good with him.
Hope everyone had a good holiday weekend.
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Vango, I am 7 months out from TC and I still have nueropathy in my feet. I am hoping this is a herceptin thing.
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Karen, this weight gain is driving me nuts!
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I know the Neuropathy is bad and I still have some but mostly in my hands now. what I have noticed is the more you use the affected part the better it is will get. My feet were so bad at first but once I went back to work and was on them alot it cleared up and my right hand is better since I use it the most but the left one is still giving me some problems. When I drive my hands go to sleep or tingle. Whatever you call it not fun. I do think some of my problems are from arthritis since I had some of this before cancer. I have a very bad spine. anyway I just want to say don't stop using your hands/feet because they are numb or tingle. I would be careful like riding a horse if you don't feel like it is safe but walking and using your fingers is a must. You can loose the strength you have if you don't and nerves do grow back. Just keep trying and you will get better. it is scary I know. I was not really expecting that side effect but I worked through it. In my job as a bank teller you really have to be able to feel and move those fingers and that scared me at first. I got a counterfeit 20 the other day and I could tell right away when I felt it. I was so happy I could really feel things again. Small things seem wonderful now. Even a counterfeit bill!
This too shall pass!
Carolyn
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Hi Everyone! I'm BACK!!!*sort of* I hardly know where to begin, except to thank God and all my friends and loved ones (online and off) for making the last month so bearable, comfortable, and ultimately successful for me! BIG THANKS to AmyIsStrong for updating you all when I could not!
Some updates, funny stories, and then it's back to my Mom's for more R&R until I can get my drains out!
The morning of surgery, our friend M. came and picked up me and my Mom and took us to the hospital. I didn't wait long to get registered, admitted, and ushered into the back for all the pre-op prep stuff. They had a TV in the pre-surgery holding area, so I watched the TODAY show like I always do on a weekday morning. Soon after they got me undressed and into the gowns and those awesome socks (am I the only one who LOVES hospital socks?), they let my Mom come back and sit with me.
Getting Something Off my Chest!
I got all my visits from the anesthesiologist, the surgery nurse, my surgeon, and yes, JONAS, the cutie-pie Physician's Ass't who would be taking care of me at THIS surgery too!
A quick visit to the bathroom and before I knew it, they were ready for me! Said goodbye to my Mom, told her I loved her, and walked into the chilly operating room. Hopped up on the table and that's all I remember!
Normally, surgery of this type (complete removal of one breast) takes about 90 minutes. My surgery took almost 3 hours! My Mom said she was pacing like a caged animal. It was because I had so much breast tissue to remove. 2130 grams to be exact (almost 5 pounds!) When the surgeon came out, she informed Mom that everything went beautifully and that I was doing fine and she could see me in recovery shortly.
Now, one of my biggest fears about surgery was waking up with a tube in my throat. According to Jonas, however, when they were bringing me out of the anesthesia, I apparently fought them (as in physically swinging my arms) when they tried to remove the tube. So they took me back down and then tried to remove it, but I was biting down so hard on it they couldn't pull it out. Finally, after some struggle, they won and I let them have the tube back! LOL!!! I told him I was probably HUNGRY, so I was trying to eat the tube!
Speaking of hunger...
Liquid Lunch!
I was told prior to surgery that when I got out of surgery and settled into my room, I would be brought a clear liquid lunch (broth, jello, tea, water, etc). Nothing heavy.
When I got to the room, the lunch tray was already there. When I opened it, it was Penne Pasta with Meat Sauce, a dinner roll, mixed vegetables, and some peaches for dessert! It smelled SOOOOOO good and I was SOOOOOO hungry...so I ate it...nearly ALL of it...
Everything was fine for about an hour. Then, in a blink of an eye, it all came back up! I hurled worse than I had ever had in LIFE! Now I don't know about you, but I HATE HATE HATE throwing up with a passion immeasurable! I would rather be bleeding! I was crying, begging for the nurse. The nurse came in, cleaned up, and put some Zofran in my IV and I napped for about 2 hours! Turns out I had a liquid lunch after all...
Recovering as a Captive of Daytime TV!
I grew extremely BORED with daytime TV and basically just sleeping and eating all day. I admit it, I don't know how to rest. It's just not IN ME to sit still in the same place for days at a time! I can't do it! Cabin fever doesn't even BEGIN to describe it! I have grown quite addicted to the shows on FoodTV and HGTV however. Probably not a good thing.
Lots of folks sent movies and books to help occupy my time! They made a HUGE difference!
The pathology report from my surgery came back with incredible news! No cancer found in ANY of my breast tissue! No cancer found in ANY of the 22 lymph nodes they removed! Because I had the chemotherapy BEFORE surgery, this is what they consider a COMPLETE RESPONSE to chemotherapy. In other words, "It Worked!" Praise God!!! Dare I say it...My body is CANCER-FREE!!! Imaginary BackFlips!!!
Venturing Out!
Thanks to Donna J. for rescuing me for lunch and a little retail therapy on Thursday! Ahhhh...sunshine!
This past Friday, I had my 2nd Herceptin-only treatment. The Chief Nurse at Outpatient Chemo was absolutely thrilled to literal TEARS when I told her about the Silent Auction at my T6 Party and the generosity of my friends/family ($1000 raised!).
I also got a new treatment on Friday; Zometa. I will get Zometa infusions every 6 months for the rest of my life. It has been shown to significantly reduce the risk the recurrence in pre-menopausal breast cancer patients with hormone-positive cancer. While I was getting the infusion, I was looking up the side-effects...more on this later.
I was cleared to drive on Friday, and after my treatment, got dropped off at my car, and went to meet Glenda for lunch and then went to Kohl's for some new clothes (especially tops that button/zipper down the front).
Came back to my Mom's that night and went to sleep.
In the middle the night, I woke up, I thought as normal, from a nocturnal hot-flash. But this didn't go away. Hmmm, maybe I have a fever, I thought. Took my temp. 100.4. They say to call your doctor if your fever is 100.5 or higher. I drank a bottle of water and went back to sleep.
Woke up @ 8am Saturday morning and took my temp...103.6!!! Ok, called the doc (my doc was not on-call this weekend) and he said to take some Tyelenol and wait 6 hours. If my fever did not break by then, to come to the Emergency Room. So it didn't and I drove myself to the ER.
In the ER, I told them that one of the most common side-effects of the Zometa I just had the day before was fever. They said ok, but they just wanted to check and ensure I didn't have something more serious. So I got chest x-rays, blood tests galore, and they started giving me IV fluids and anti-biotics. I think I had an acute case of GoodInsuranceItis! LOL!!!
My fever didn't break after a few hours and the oncologist on-call wanted to admit me, just to be safe. Ok...
My fever broke overnight, but then went back up mid-morning the next day. Combine that with the fact that my blood count (white and red cell) numbers were really low...I was spending another day/night in the hospital. *sigh*
Meanwhile, he didn't not believe the Zometa was the cause of my high fever or low blood counts. He felt there was another unspecified infection lurking about and wanted me to stay hospitalized until they found it. Needless to say, this scared me and upset me to no end! Who wants to be told they have a mystery infection? Geesh!
My regular oncologist was back this morning (yes, I was still in the hospital as of this morning). He came in, took one look at me and told me I was having a reaction to the Zometa and that I could go home today. Major EYE ROLL! Deep breath, count to ten.
Now, don't get me wrong. I am not complaining, nor am I ungrateful. They did what they absolutely were supposed to do in the face of uncertainty with cancer patients, which was check for every potentiality and ensure they weren't sending me home with some dread disease that I had little reserves to fight. But it wasn't exactly how I planned to spend my Labor Day Weekend! LOL!!! Just praising God it wasn't anything more serious!
So that's all the news that fit to print! Sorry it's so long, but I had a lot to update! There are a thousand other wonderful and miraculous things that happened prior to and during and after surgery and I am just thrilled to have some semblance of energy back, that my mastectomy scar isn't horrifying, and that my Mom is taking such excellent care of me in spite of dealing with her own health challenges. I guess we just take turns taking care of each other!
Take Care Everyone!, Alaina
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gramma23 -- thank you for the kind reply. I bought the Biotene mouthwash. I feel the best today I have felt since my first TCH. I am eating better now. When I went in for my first visit post IV (9 days later), they said I lost 2 pounds and my Onc told me what you said...eat anything that is appetizing right now. So, I went to In-and-Out burger...and it was pretty tasty.
Lisa1964 -- thank you for sharing your site with me...such wonderful horses you have. What a blessed life you are leading with a good husband and happy home! I hope your hair (top of your head) starts growing in sooner! I wish I knew about the darned Cold Caps before starting TCH...there are two women I know of on TCH that have only lost a small amount of hair around their ears and nape of neck (about 10% hair loss) because they are using these Cold Caps during treatment. That would have been nice to be able to retain our hair. Why isn't this option more publicized? Gosh...
So, it's the Herceptin that causes that awful taste? Hmmmm
If I may ask you ladies, when did you first notice the neuropathy? I do not have it yet, and am slated for my second treatment on 9/17/09.
To those that are using baking soda to brush their teeth, are you simply using the boxed powder, or are you using the Arm & Hammer baking soda toothpaste? I am also prone to getting canker sores, too...and I don't want them! I hear too that they easily get septic, so anything I can do to avoid them as much as possible would be wonderful.
My Onc told me that TCH treatments 4 & 5 are the most difficult...seems to mirrow what you ladies are saying. Is it that the symptoms are amplified, or, just that you get very tired? It's taken me about 10 days to get past the GI stuff (still have a little, but overall, I feel better than I have felt since the first IV). I am going to try to keep working full time as long as possible. Has anyone that has to work full time (like me) been able to maintain that during the course of treatment? I cannot afford to not work as a single mother...that would be a disaster for me
Hugs to you all...it is so reassuring to see your posts!
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HELPPPPPPP anyone have a cure for nails my nails went through it while I was on chemo and now a year later they are starting back up they are white and brownish. I have been using Tree Oil but its not curing it .....
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Sanaisa.........I use baking soda straight from the box. You can brush your teeth with it, but not every single day, because it is abrasive, but cleans really well. But do mix it with warm water and swish it in your mouth every day, it is a great germ killer and breath freshener and good to use whether you have mouth problems or not.
Alaina... congratulations on getting through the surgery and all the hospital stuff, its not fun. See we knew you would be fine!!!!!
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Sanaisa - the nueropathy di not hit me until about round 4 of TCH, and then really cranked in about the second H only tx.
And, yes, I must agree, the the last tx's are the worse. The chemicals have a cummulative effect that eventualy just take over. Drinks gallons of water. Have a great attitude. Live your life! DO NOT let this take over YOU!
Lisa
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Sanaisa - the nueropathy di not hit me until about round 4 of TCH, and then really cranked in about the second H only tx.
And, yes, I must agree, the the last tx's are the worse. The chemicals have a cummulative effect that eventualy just take over. Drinks gallons of water. Have a great attitude. Live your life! DO NOT let this take over YOU!
Lisa
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Sanaisa,No it is not just Herceptin that caused the awful taste. I believe the TC also causes the worse taste but the H only still gave me a bad taste just not as bad. I got the Nueropathy later in my TCH also but just don't remember just when. # 4 was my worse tx but by #6 I was really fatigued and I was so happy to be finished with it but had no energy to jump for joy. Like Lisa said drink you liquids (water is best but you can add stuff for taste).Just make sure you have plenty of meds for those next few tx. With me the GI problems were worse on #4 but I let myself get constipated before it and boy was I sick. Keep your bowels going, the water helps. I had a lot of diarrhea.Not fun! I got dehydrated a couple of times but I was drinking water. it was just coming out faster than it was going in. I had to have extra IV once. some did have an IV the day after tx.
Alania, I am so happy everything went well for you but sorry about the hospital stay. I had a hospital stay the first of July but it turned out to be my arthritis causing my horrible pain. I thought it was a heart attack. Best to be certain and like you I got all the tests my insurance would approve. You need to drink water too! It is very healing it washes all the wastes out of your system and helps it heal. I am Big on water after all your body is mostly water.
Like Wendy said baking soda is abrasive. I used a mixture of 1 quart water,table spoon of soda,tablespoon of salt (salt is healing). rinse after everything you put in your mouth. Or in my case everything that comes up. that did not completely keep me from having sores but I do believe it kept me from having them more than once. My daughter and I have always had canker sores but I had not had one in years and boy I got them all at once. Sometimes they are caused by a virus and sometimes by fungus and sometimes too much acid in your stomach. I guess that is why they gave me all the meds they did just to be sure.
I hope everyone is doing good. Let us hear from some of you newbies on how you are managing. We really do care.
Carolyn
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Alaina: Thank you for filling us in on your surgery. I'm due for double mast in 2 weeks so have been apprehensive. My biggest concern is getting well enough to drive. I'm so far in the boondocks and have no public transportation that I will have to rely on family and friends to shop and run errands and since I'm so fiercely independent I just dread being an imposition on folks.
ALL: Thank you gals for your support regading my SO's departure. I had my #2 Herceptin only treatment yesterday and that's when he came to pick up the rest of his stuff. At least I didn't have to deal with that.
I also saw my oncologist and she had not seen the MRI report from my surgeon. She was thrilled and we cried and hugged! She said that "Basically we have beat the cancer and everything we do now is preventative!) We discussed some of the lingering side effects of TCH. Apparently the Taxotere screwed up my tear ducts so that they no longer drain. I'm 9 weeks out from TCH and she said this may correct itself over the next couple months. If not I'll need to get tubes inserted in the drain ducts (she says it's a simple(?) prcedure. Anybody had to go through this?
We also discussed my hearing loss. This seems to be due to either pressure in my ears or loss of the cilia that goes with hair loss. It may or may not be permanent. Insertion of drain tubes in my ears may alleviate it. It could be a lingering effect of the Taxotere and related to the tear duct problem. Again, anybody here had this side effect? In both eyes and ear cases, she said give it a couple months and both may correct themselves. The Taxotere just needs to work itself out.
Also saw my surgeon yesterday and we went over pre-op paper work for the double mast. He also put me on Xanax to help me with the stress of my SO leaving. I took one last night and slept through the night for the first time in months. Who needs a lover when you have Xanax?? LOL
My niece is going to come stay with me for a week after surgery. What a blessing that will be. She was a trainer for the football team in high school and will be going back to school in October to study to be an EMT. She's gonna be my exercise coach. I'm so lucky that another sister is an RN and she can help with bathing, changing dressings and that kind of stuff. My family has been so supportive and good to me! I am blessed.
After surgery I'll still have rads, but both my oncologist and surgeon are going to try to work with a local doctor and the local radiology clinic so that I won't have to drive to Tampa for treatments. Looking to start rads about the 20th of October. Hopefully by Thanksgiving I'll be pretty much back to normal.
Hugs to all you gals heres. You are a wonderful support group!
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SWAMPY- i have the same eye tearing issue that you do. It is really annoying. i am 5 weeks out from tx and it has gotten only a little better. if i am indoors with any air blowing i am a mess. Tears are just streaming! But i notice when i am in situation where there isnt any cold wind blowing i am not as bad as i was a month ago.
My onc send me to an optomologist and the first one wanted to just put the tubes in right away, he didnt even do any major tests on me first. So i went to my mothers eye doc and she was much more thourough and told me that as long as my ducts were clear i would just wait out the taxotere. The eye doc and her collegues told me that it last several months after treatment. She just would "irrigate" my tear ducts by injecting saline into them to see if they drain into the back of my throat. so far they are still clear (just a little constricted from the taxotere). So as long as they are not obstructed with scar tissue then i do not need tubes.
But if you need the tubes, do not worry, i was scared when they told me that and then found several people in my life that have had them for whatever reason and all of them told me it was painless and easy. Only takes about 30 min in the eye doc's office to put them in. So if you get them, dont worry, im no longer scared about them now that i hear they are not painful.
You sound like you are doing well, Congrats on your good MRI results! That is fantastic news!
Stay tough!
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Trish! Thanks for the info on tear ducts. My onco said the tube insertion was pretty benign if I need it. Like you sitting with the air blowing on my face does aggravate the tears. I'll wait out the Taxotere. :-)
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Swampy, I do think the tear duct problem is very common. I have dry eyes from the auto immune problem I have and sometimes they put plugs in for that but I have not had anything done. I did notice I had a few tears when I was on the TC and that was good for me. My friend had an auto immune problem and they plugged her ducts and she had tears all the time so she had it undone. I think the drains can be undone too.the main thing is to wait a while I think. Too many tears, not enough tears, who ever thought that could be a problem? Hopefully yours will be okay after a while. I wish your the best on your surgery and I am so glad you are cancer free.
I had to have another Procrit shot yesterday and I am beginning to think my body is getting to where it does not react to it. I am not sure what is next. I asked the onc if I should take some vit and minerals and he almost blew a gasket. He said no! don't start that stuff. Just eat well but of course he means not too much as to gain weight. I was so aggravated about all I try to do to keep the blood counts up I just ate ice cream for lunch. I know that is not good but at least it was frozen yogurt. I really don't think that is healthy but I of course told my self it is milk. They flushed my port after I asked how often I was supposed to get that done. He was shocked I did not know that. No one ever told me how often. My friend had the same problem. She was 5 months after her last tx and started feeling odd in that area so she asked and they nearly freaked out and told her it needs to be done every 3 months but my onc said every 6 weeks. I wonder why the difference. I am more confused than ever and of course I still go in every 3 weeks for a blood test. He said the reason my counts are not rebounding is the auto immune stuff. He said the chemo affected me more than it does others.I told him before it was low when we started and he said not that low and then yesterday he told me the exact same thing I told him last visit. I think he is over worked. I forgot to pick up my schedule for my visits yesterday and they will mail them but I have considered not going that often. Maybe if I did not know my counts were low I would not feel tired!
I go to my rheumatologist this month too and I am going to see what he thinks about my blood counts and if it is the auto immune stuff. where I had radiation is so sore in my collar bone but of course auto gets blamed. I am sick and tired of being sick and tired.
Sorry about the vent. Have a good day everyone!
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Swampy, the double mast is easy! I had mine last September. I had no dressings to change. I had simultaneous reconstruction so I woke up with a support bra on and there was some guaze in the bra, nothing messy. The only hassle was emptying the drains, but you can easily do that yourself. I had my dble mast. on a Wednesday and was drving the following Tuesday. Had my drains removed that same Tuesday and was back to work Wednesday. Only lost that one week of work.
Very interesting about the hearing loss. I swear I have lost significant hearing in my right ear.
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Thanks Lisa and Gramma.
For those suffering hearing loss.... google "ototoxicity carboplatin".
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gramma23 - thank you for the kind reply. It sounds like the neuropathy is very common. Just one more think I am not looking forward to, oh well!
I went to a "Look Good, Feel Better" meeting last night. The two women that volunteered their time to teach women make-up application and tying of scarves were so kind. I don't mean to be a negative Nelly, but the ladies that were present with me (5 others) were not the most polite to the trainers. One woman was up in arms about the fact that she "had" to have the "fair" cosmetic bag (there were 5 "mediums" and 1 "fair") and it was almost ridiculous. There was another woman there that was much more fair complected than her. Three of the ladies chatted up quite loudly while one of the volunteers was trying to instruct...the volunteer asked so kindly if they would please wait to chat until the demonstrations were done. I know we are all going through a difficult time, but I don't believe that because of that, it gives us the right to not behave with some decorum. I did learn a lot and am deeply appreciative for the care package and instruction. As questions ensued about treatment, I came to find that the other four ladies were shocked that I did not receive "hydration" IV's the day after my first chemo (what?). They all said that their Onc's had them return the following day for a "hydration" IV. They also could not believe that I did not have a pre-chemo informaiton meeting (again, what?). Apparently their Onc's have an information, rather, "orientation" meeting for new chemo patients to attend to be briefed about preparation for chemo, anticipated side effects, etc. Wow! I never got that. As a matter of fact, on my chemo day, which took almost 7 hours with the four IV bags they gave me, they did not once offer me a glass of water, and I had not a clue that I should have drank a good amount of water the day preceding, day of and day after. I did have one diet coke on the day of chemo as I managed to ask the nurse when I heard she was leaving to get lunch to pick me up a sandwich from the Burger King next door...probably not the best lunch, but it was all I could manage. I remember that morning, when she started the IV's and told me how long I would be, I mentioned that I somehow had the impression I would be in and out in less than 2 hours...and this is why I did not bring a lunch. She corrected me and said, "no, you will be on the IV for at least 6 hours.".
I was all alone in my little makeshift room for almost 7 hours, no TV, just a bell to ring when I noticed the IV bag was empty. I thought this was normal. It wasn't until I found this wonderful board (almost 4 days post my first chemo) that I learned to force the fluids. Of course, after I found out, I drank a ton of water. I will do this going forward.
I had my first Neupogen shot yesterday, and asked the nurse if there were any side effects I may expect, or anything I should be aware of? She told me "No, all it does is help your body produce more white blood cells, there are no side effects." Well, maybe I am imagining it, but my lower back is aching something awful, and I am sure not feeling so hot. I will go back for another shot today, and one more Friday. I think it's a real bummer how I find out what is going on/what to expect, etc., after the fact. I am not sure how to "arm" myself for what to expect in the future. This is why I am thankful for your postings, as I now know about the Neuropathy and even possible hearing loss with the carboplatin. At least if these things happen to me, I won't feel like I am imagining it all. I am getting the impression my medical team's motto is, "ignorance is bliss".
I have been maintaining really good oral hygiene...will grab that baking soda today as I have my first canker sore
My hair starting falling out last night...at least I knew to expect those two things to happen hugs...
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Hi Sanaisa,
Sorry to hear about the hair loss starting. That is traumatic. Some ladies choose to shave it off at this point, while others go for a short cut so that the loss is not too dramatic.
I did not have a hydration IV either; I am not sure if that is common as I have not heard about it before. Our doctors and nurses are so overworked that they often forget to tell us something or think someone else told us - that is why this board is so useful.
Swampy,
I agree with Lisa that the mastectomy, even though a significant procedure, is one where a woman can recover fairly quickly (at least physically). I did not feel pain at the surgery site and the drains were soon removed. I could have gone back to work after one week and I too could drive a vehicle. I took two weeks off because the doctor advised it, but I really did not need that long.
Linda
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I thank all those who took the time to explain about their mastectomy recovery. I'm much less apprehensive about the pain the the recovery time now. I am amazed that you gals were back driving in such short time. I guess some women are very concerned about losing their hair, but that never has bothered me since I buzzed it at tx #2 and have not worn wigs or scarves at all. Driving is my priority since I'm alone now and live in the boonies and transportation is a big issue. Also so is my independence. LOL
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Sanaisa, I missed part of an earlier post regarding bad taste and herceptin. The herceptin taste in only a breif metallics taste, less than 12 hours. The horrible sewer taste that lingers for weeks is the TC
Swampy, glad you are not owrrying about the mast. anymore. You will be fine!
Lisa
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Ah! Vangoghpro
Another horsey person!!! Thank you for the pointer. I have a haircut appointment on Saturday...will be going short. I have had long hair for years...not looking forward to it! My hairdresser wants to take me out for a small bite and a glass of wine afterwards...I am so afraid to have wine at this time...has anyone even had a taste for that? The thought of having a beverage with alcohol in it sounds horribly unappealing. I will probably pass. I hope I can have some sushi by Saturday....it's been too too long!Swampy ~ I understand that it seems to be such a fuss being made over hair. I know for me, I have always felt that my hair makes me feel a little more feminine. I am sure that in this process of it falling out, I will realize it does not matter. I suppose if I had a hubby or steady boyfriend, it wouldn't be so bad. I know that there's probably zilch chance of even thinking about dating for the next year...certainly not the priority at this time!
Hi Miss Lisa1964... you made me laugh so hard when you said "The horrible sewer taste that lingers for weeks is the TC"! It is so funny...I do not seem to notice a "metallic" taste (yet)...but when people ask me what it is I taste, all I can think of is "awful"...when they say, "is it metallic?", I say "no, I can't put my finger on it, just that nothing tastes as good as it used to." Sewer taste...perfect!!!
xoxoxox
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Sanaisa....I had a 'chemo class' the week before my chemo started that really helped me. I am sorry that they did not offer that to you. I have never heard of a hydration IV, not even on these boards before. I, too, like you had long hair and was absolutely devastated to lose it. I shaved it off myself (I am a hairdresser). I bought a wig made of human hair and had it cut to match my hairstyle I had before and people can not even tell that it is a wig.
My advice to you (since you didn't have a chemo class) is to drink a lot of water the day before each chemo, during chemo and a whole bunch more after chemo! It helps so much. Also, you will want to eat a lot of protein and iron to keep your red blood cell count up. Eggs, milk with carnation instant breakfast mixed in, malt-o-meal, and kind of meat preferably chicken or turkey will give you protein. Also, they really don't want you to take anything classified as high in anti-oxidants because it can protect the cancer cells where chemo can't get to them. You can take a multi-vitamin, but not Vitamin C, E or A. You should wash your hands all of the time to avoid infections. Anything else you want to know, just feel free to ask us!!
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Hi everyone!
Nice ot see regulars like Lisa back.
Bold,
Are you around? Have you started on the aromasin yet? I haven't. Completed my RT two weeks ago. Will decide once I get the results from blood test for estradiol levels.
I am putting it off becoz my bs's still adamant about aromasin being no use in my case. And, I am hoping to grow somemore hair first before I start on it.
What's your situation like?
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Sanaisa - I never had a pre-chemo informational session or a hydration IV. I brought a gallon of water with me and drank every drop during the infusion.
Neupogen - I also had a major aches with my first Neupogen injection; I took a Claritin and the aches never returned. I think I read somewhere that the aches are a result of kicking the bone marrow into cell production. Also, I had my first injection at the doctor's office, after that I gave myself the injections.
Foods - My oncologist told me that eating foods rich in iron would not help me because my low RBC counts were based on bone marrow not producing the cells, not iron-poor blood cells. Thankfully, my RBC were never a serious problem. I was instructed not to eat fresh fruit and vegetables, or spicy food. Alcohol was strictly off-limits because my liver enzymes were high throughout chemo.
Hair - Go with whatever makes you feel comfortable. I chose to be a bald-headed woman.
Work - I worked full-time as an elementary school tutor through chemos 1 - 4. During the initial treatments, I was really fine, but as the treatments progressed, I had fewer great days between treatments. Chemo 5 and 6 were more difficult, but I was out of school for summer holidays. A question that I will never have an answered is whether I would have handled 5 and 6 better if I had been up and about with the daily distraction of work.
You may want to take some time to consider your infusion day. My infusion day was chosen based on my class schedule, but it set me up for working through one of my "crash" days. Perhaps the ladies can give you some guidance on how to calculate the down days for each infusion.
Remember, the American Disabilities Act allows for chemotherapy patients to have workplace accommodations. My employer extended my 40 minute lunch break to an hour so I could nap during lunch.
Please make sure that you enlist help from family and friends. I cannot speak to being a mom, let alone a single mom, but I am sure there are many ladies here that can give you some ideas on how to prepare your household and children for the times when you need to rest.
Vitamins - I took my oncologist a list of the all the vitamins and supplements that I regularly took. He looked the list over and approved everything but the daily baby aspirin--vitamin A, C, E were NOT on my list.
Here's wishing us all the best.
Cheers!
Cloud
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Alaina! I am so glad to see you posting. You are a blessed woman and you share your blessings with your wonderfully playful attitude toward life.
Cheers!
Cloud
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Hi Ladies,
I am happy to hear so many doing well and to hear that I am not crazy with my hearing. Does anyone else have eye twitching. Drives me crazy, like I am winking at everyone. "Hey hot stuff" even my husband thought I was being frisky/ WRONG. Also I need some answers. Who is doing rads after this?? I did not think I would have to but am told probably now. I had a bi-lat with 1 node so I thought I was clear. I just want to know who else is like me(stage etc doing them) Is this a new protocol? Also all you oldies but goodies(cinrae) I made the mistake of going to a her2 board on the wen. It was suggested by a lady at the hospital. I usually have my own room but for my herceptin I was in a group room. 3 of the ladies were her2 and had been going through chemo and treatment since 01' 04 etc. They made it seem very daunting. So anyway I went to the her2 board and got very depressed. (don't do it) I want to know that there are her2 gals that are walking around years later with no recurrence. Just to ease my mind and see how the other half live.
Blessings to all,
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Shelclaire: Glad you found us here!
Eye twitching is normal. I'm 6 weeks out of TCH and mine has gone away, but I still have tearing.
I am very fortunate that the TCH killed all the cancer in my tumor (stage 3). My onco says "We beat the cancer, so now everything we do will be preventative." So I have a double mastectomy scheduled for the 21st, Rads to follow in late October and continuation of Herceptin until next April. As my doc told me, "curing cancer" is like being an reformed alcoholic. You are never really cured because it could come back, but the surgery and rads will increase your chances of that not happening.
Every woman is different and every cancer is different. It's a crap shoot, but so is life. My surgeon said that doing the mastectomy and rads increases my non recurrence rate from 75% to 88%. I'll go with the odds (VEGAS TIME!!! --LOL)
Hope this helps.
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