Taxotere, Carboplatin and Herceptin
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Thanks so much for all of the good advice, ladies!
I ended up getting a ear infection yesterday and the doc put me on a Z-pack. I couldn't figure out why I was so dizzy and tired, weak. Now, hopefully this infection will clear up and I will feel a little better. The doc said if I don't feel better by tomorrow, I will need to see him.
Mason, I go in on Monday to talk with the nurse about all of my side effects, etc for the 10 day follow-up after chemo, but I won't get my bloodwork done until the morning of my next treatment.
Bold, thanks so much about the compliment about my hair, but I am sure it will be gone here in a couple of weeks. I am a hairstylist and this will be hard for me to cope with. But I can do it.
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Jaimieh-I finished filling my tissue expanders the week before I started chemo. There still heavy bowling balls, but I'm getting used to them. It's a mental boost having them even though they're not quiet normal (and a bit bigger then before). I need to ask my ps this, but I know we are waiting until after chemo to have the implants put in, but do I have to wait until after the year of Herceptin? Will they do it during those treatments? I hadn't thought about that before. He had mentioned seeing me in July, so I guess I just assumed it would happen during the remaining Herceptin doses. What does your doc say?
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Magnola - You can have the implant surgery done while you are on Herceptin only. The plastic surgeon just has to be sure that your cell counts have returned to normal. My surgery is scheduled for the end of April and I am still getting Herceptin infusions every three weeks.
Won't you all join me for my little pity party? I have officially been diagnosed with lymphedema.
I showed another sympton yesterday and as of today, the lymphedema specialist says that I have it. I set up appointments with her and she will see me for a week (every day) starting in 2 weeks. She says that I need to learn how to manage it and stop the progression of the condition. She says to wear my sleeve as much as possible and she will talk with me about it more when she sees me.....sigh.
I used to believe that life was 10% what happens to you and 90% how you deal with it, but this has just pushed me a bit too far. I hope I start to feel hopeful again. I have 2 young boys who need their mom back.
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Oh My2boys: What a heartbreak. I know that your will keep it under control. I just think that it sucks, thats all, one more thing to deal with. I guess we are not given more than we can handle. I am sorry that you have to deal with it.
I am going on 4 days with about 2 hours of sleep a night. This bronchitis is just the pits. I can not lay down without coughing till I wretch. Its exhausting. I know that it will eventually pass. I have the funeral this weekend and I really would like to go to show support for the family so God willing it will of abated by then.
Mosquitoes are not a problem as I use these giant dunkers that are animal friendly. They work great.
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I started TCH on March 13. I have lost 10 pounds(I needed to), due to the fact that everything tasted like medal for a week and 1/2, and I also could not stop going to the bathroom. I didn't have any vommiting which was great. I did have a really bad rash on my chest a few days after the chemo-but they think it is from the steriods I take prior to chemo. I still have not lost my hair yet, but I wore a wig to work today to try to get used to it, and it itches like you would not believe. I might be switching to scarves.
Simone
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Smile: do you think your bones were achy because of the chemo or the neulasta? I just had my shot. Ibuprofen worked the first time, but maybe I will try the clairtin if I get bad pains. Did you use it as a preventive or as you felt bad?
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Yeah -- Pathology report from surgery came back clean! No cancer in any of the lymph nodes that were removed. Still have one of the two drains in, but stiches from main incision were removed today.
Cupcake you are soooo right the drain is about to kill me. Can't do a darn thing without some tugging on the stupid drain that causes more pain than the six inch incision on my chest. So glad to see the drains were the worst for you too....the surgeon kind of looked at me wierd and said they shouldn't be painful, kind of hit me like an obstetrician telling you that labor pains are just mild discomfort.
Have to deal with the drain until the output is reduced almost to half of where it is now. So frustrating.
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my2boys: I'm sorry to hear about your diagnosis of lymphedema. I was just diagnosed at the beginning of January. Now that I have a properly fitted sleeve and glove, the swelling is down to almost nothing. Things were so bad for me that I could barely lift a fork at one point. I do exercises and go for Manual Lymph Drainage (massage) about once a month and this seems to "clear up" fluid that seems to collect under my armpit. If that area's clear, then I find my arm and hand do pretty well. I have about 80% of my mobility back. It's an adjustment and I don't know how I'll cope with the garments once it gets hot here, though. Hang in there, now that you've been diagnosed, it should get better from here.
Bold: I hope when you're reading this you managed to get some sleep. I can handle a lot of things but lack of sleep is the worst. Makes you crazy and it can make a person feel so helpless.. Can you try something with codeine in it for the coughing? Do you have a recliner chair that you could sleep in if you have to?
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Cali4: You will feel so much better after their out. I'll kina warn you that it is freaky when he pulls them out, but just feels ucky doesn't hurt that much. He pulls them quickly. The puppies are long though. I'm glad you remembered what I said. I have had no other pain but those pesty tubes. I'm thrilled to hear your path report is clear.
My2boys: I was bummed too about my dx of Lymphedema. I have a sleeve, but when they fitted me for it I was 20 pounds lighter in weight. Now it is like a rubber band on...I don't think my fingers are suppose to turn purple..lol Are you suppose to wear the sleeve everyday? Since my rads I hadn't went back to the therapist, but would like to again. She taught me how to do it, but so much nicer when she did. My hand and arm is slightly bigger, but hadn't gotten any worse. I will wear the sleeve when I go on the airplane though. If it does get bigger can you bring it back down or is it hard?
Cheryl: How have you handled the sleeve outside of being hot? Does it get big if you don't wear it? It is so hard to get on...have any secrets how to do it? When did your Lymphedema begin? I know you said January, but how far out from your surgery? Mine was as soon as I woke up.
The rest of you campers finishing rads congrats to you. Remember when you reach forward you need to reach back.
Simone, Your in the cabin with Kathrine and Karen...Senior Camp Counselors got three new ones to process and watch out for....
I just got word that I will be on Herceptin now longer because the Radiation onc took me off from it and tomorrow I will get a triple dose to catch up. I can't remember did the heavier dose cause problems...? Anyone remember when they first got the big dose? Every three weeks for the H so I will keep my port in a little longer thank you very much.
For those of you loosing your hair and when people stare and bug you about it just look them square in the eye and tell them you work up at that nuclear power plant just up the river from here. Watch their expression..lol
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Haven't posted for some time while trying to get a lot done during my good stretch before next treatment (#4) on Wednesday. Congrats to those of you finishing chemo and radiation and a celebration for birthdays, anniversaries, and all the victories of getting through touch days. Welcome to the newbies. You have come to the right place.
This came today from a friend who is a survivor of pancreatic cancer:
What Cancer Cannot Do
Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spiritCupcake: In Boston here we would call your sense of humor "wicked". That is the highest compliment. I can't imagine getting through this without a sense of humor and lots of laughs.
Where else but here can one learn about ponds, horses, Jeff Dunham (thanks for the tip), how to handle side effects, treatments, dry skin, runny noses, how to cry, how to laugh, ports, hair, constipation, lymphodema, nausea, hope, courage, joy, love, and caring--all in one place?
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Thank you Mason, Cupcake and Bold....I really appreciate your words of encouragement. They help me through this gray period I'm having today......I really hate days like this.
Cupcake and Cheryl - I am so sorry that you have lymphedema too. In answer to your question Cupcake, yes I was instructed to wear the sleeve and glove every day for as long as I can. I guess it's a matter of getting used to it. My lymphedema therapist showed me a manual massage that she wants me to do every day. It only takes about 5 or ten minutes and I have been doing it every day after my morning shower. My arm is almost normal after only wearing it for 7 hours today, but by the morning it will be slightly swollen again....sigh. I am scheduled to see the therapist for 5 days straight in about 2 weeks, so I guess I will see what she is able to do to help me with this. As far ar airplane trips....I was told that absolutely I must wear the sleeve and glove. She told me to do this before I was even diagnosed because she was concerned that the cabin pressure in the airplane can bring on lymphedema. This is why she measured me for a sleeve before I even began having problems with my arm. I guess I was lucky in that I saw her before I started having problems, so she already had my baseline measurements recorded and I had a sleeve ready to go in case I needed one. Maybe you should get re-measured for a new sleeve, Cupcake. It sounds like yours is too tight.
I am hoping that once these bulky expanders are gone....in three weeks.....that I will find some relief. My new implants will be much softer and easier on my chest and arms.
Cheryl - I'm glad that you're feeling better. That must have been so uncomfortable for you to not even be able to lift a fork....oh my.
Thank heavens that you are finding some relief. One thing the lymph specialist did say was that all we needed to do was get control of it and this way we can prevent it from worsening.Bold - I do agree that we are never given more than we can handle. I pray every day and I ask for help with this heavy cross that I am carrying. You ladies have made this cross much lighter....even while you are weighted down with your own crosses to carry. Thank you all.
I'm just in a funk today.....I usually try to stay upbeat, but this is a crummy day. Even my plastic surgeon (who is usually very abrupt) was caring and sweet today. Kind of like he sensed my fragile emotional state.
Anne
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okay, Tamox is making me evil. I am a very nice person but I am certainly feeling evil today. It is like having triple PMS. I called the onc and I am now taking effexor. I hope I feel better tomorrow. It is weird. I feel good physically but I am mentally stressed and irritable.???????? @#$%^&&*(*
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Anne: I am so sorry that you are having to deal with lymphedema--I hope and pray that your treatments, etc will solve the swelling and that you will get back to "normal" soon.
Jaimieh: Yes, I am excited to have a date for the exchange surgery. I still have 3 more TCH's, so I believe we are just about exactly on the same path. I only have one expander, but it is very hard and annoying. I think Magnola asked about exchange surgery on Herceptin, and yes you can do that. I should finish my chemo in May and will continue on the Herceptin until 2010, but my implants should be in place in June--YEA!! Have a great night.
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Helen we are almost on the same schedule I am a couple days behind you. I finish on 5/18. I keep telling my oncologist that I am not missing my date with my PS.
I have to exchange bi-laterial so my entire chest is full of hard softballs. 0 -
Hey Denali- hope the storm Idaho sent your way still let you get your treatment- we kept the winds until today so tomorrow hang on to your hats and wigs
my2boys that's really too bad about the lymphedema-- I hope they get it under control and tomorrow will be a better day for you
Simone welcome to our cabin!
Cupcake, last week they did 90 mins. of herceptin and I didn't have any SE with the longer treatment
I don't know if any of you are into meditation but I was given a CD that's called Relaxation /Healing. by Peggy Huddleston. It's a great CD really helps to reduce the anxiety of surgery and chemo
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Thank you ladies for all your replies. I will definitely get a prescription when I see the Onc again on April 6. When I went for the first chemo last Monday they asked me if I had taken my pre chemo medication, and I said no I never got any. They were not surprised, and I know they did give me a med for nausea in the IV, along with Benedryl, which made me dizzy, and 2 Tylenol. And then proceeded with the Herceptin, then Taxotere, then Carboplatin. They never gave me a prescription for use at home. That makes me mad now, but at the time I assumed they knew what I needed. Most of you seem to like the Emend, so maybe I will ask for that.
Wendy
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Cakelady, I think most of us also take a steroid called Dexmethasone the day before, day of and the day after.(at least I do) I was given a prescription for prochlorperazine and ondansetron. I didn't have to use them but did take the emend. The nurse gave me two samples of emend- she called it the "gold medicine"as it's $100 a pill but it works great and that was all I needed to keep the nausea at bay.
Karen
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Magnola: The first shot I took Motrin...didnt help much, so when I heard about the claritin...I took one first thing in the morning the day of my shot! Worked great on tx2. I will continue this...I have a high pain tolerence, but that was the worst I have ever experienced. Dont wait until the onset of the pain....too miserable. Take it before you get the shot! Let me know how you do.
my2boys....sorry to hear about the new dx. you are strong and will get through this and you WILL be there for your boys...maybe with a pretty sleeve on, but YOU CAN DO IT!
I had tx3 today...hate the nurse who gave me my IV....I WILL NOT have her give me another! There are four nurses in that office and if I have to turn her away next time I will. She has a favorite place to stick people, and that place on me hurts like hell! When I told her no today, she was not happy and started slapping my arm for another vien that was already plumped up...I had to pull my are away and tell her to STOP! Steroids make me really Bitchy!! Even my BH has said so! good thing I only take them every three weeks...I even dont like myself acting like that! But I am brutally honest all the time..without the sarcasim though!
I have noticed that today that the fatigue set in early....hope I can make it work at least a half day tomorrow...then home for the weekend of rest!
Simone and Katherine you are in a great place..lots of great ladies here with great advice....never think a question is stupid or silly....just ask!
Cupcake: He knows that I will be out the door and never return again if he does that to me again! I love him dearly...but I love my peace of mind more! Like you said first time shame on him...second time shame on ME!
The doctor recomened Black Cohosh. He said it takes about a week to work...said I would try before taking another drug. But if it doesnt work...I all over whatever he suggests. This is absolutely misserable.
Shari
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Sailor,,,,,,,,,,I hope you dont mind but I copied what you wrote about What Cancer Cannot Do and emailed it to my brother who is battling lung, adrenal and brain cancer. Which sad to say he slowly is losing his battle with this terrible disease. Those words are just so right on. Actually very beautiful words I think and so true. Thank you for sharing.
To all the new ladies,,,,,,,i'm sorry you have to be here,,,,,,,,but you will learn, share and encourage each other. Great group of ladies thats for sure.
Lets hope that there is no connection between BC and ponds. I think its either in your genes or the luck of the bad draw. But thats just my personal opinion.
Take care of yourselves everyone,,,,,,,,,,,rest, ask for help, be in constant contact with your oncologist when side effects come up, drink water water water, and keep your eye on the end of that tunnel. Be strong all. It will soon be a distant memory.
Cindy
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Dear Ladies,
Hair started to fall off in clumps last weekend. Last night, 90 percent were shedded. Still haven't shaved the rest. Will cut it off with scissors by myself later today.
Second chemo shot yesterday. Felt nauseous last night but ok once I fell asleep. Felt flushed and full of energy this morning. So far, the bone and muscle pains have not set in yet on Day 2, but my appetite has gone.
I have a question about the nurses taking my blood pressure on the arm during the transfusionis. They do it every half hour and my veins are like bursting when the blood pressure machine pumps up. When I complained, they stopped the transfusion and the tension and pain eased. Do they routinely stop the tranfusions in the US when the nurses measure the blood pressure"?
I will requuest it everytime when I go for the third shot as I think my veins will all be ruined by at end of the six TCHs and 14 herceptin shots. What about my other arm where I did the sentinel nodes? Is it too soon to use it? (had surgery on 11/2/09 The treatment standards in HK really sucks. They can't even show me the packaging for the Taxotere which I have to pay out of my own pocket. Sorry for the ranting.
Bought five buffs yesterday and an extra lovely wig for the day before. All in all, spent about $1,100 (US130) on head products so far. The buffs could be washed and I love them already.
It was my son's sports day today but i couldn't go. His classmate's parents kindly took him to the sports grounds in Aberdeen. God does send many many angels along my way.
I have boiled barley with water chestnuts and made porridge for breakfast. Still haven't taken teh steroids yet.
I have filed the medical claims. I am full of energy becoz of the steroids, and even yelled at my son for not brushing his teeth..............this chemo thingy has turned me real bitchy.
About fish ponds, we don't have a garden but we have a large balcon in our HK flat. We keep goldfish and water plants (without any filter or oxygen) in an oriental clay round pot about 2 feet in circumference. It is pretty successful as the water cabbages and elephant's ears' root systems provide both oxygen and food for the fish(they could survive on them up to two weeks - wonderful for hols.) They do die off in the hot and humid HK summers, but it can't be helped. The longest one goldfish lived was 2 years and I cried when it died. We also keep baby koi and let them off in the campus pond when they get big. I love my "pond" and it is really therapeutic amongst all the plants in our balcony. We also have a tortoise which just came off hibernation last week.
For those facing problems with birds snacking on their fish, a net works wonders. We tried that in our London home and it stopped the problem.
Lisa : you could try sprinkling suphur around the pond to deter the snakes. Also, plant some nasturtiums and mint/basil since they hate the smell of the plants. You could keep a couple of geese too as snakes hate them. We use to have plenty of cobras frequenting our garden in Malaysia and my mum kept dogs and geese to ward them off. Roasted geese was yummy too.........
About husband poachers, beware of your own gfs too. I had a g/f who went after my hubby before I got BC. She is a traitor, leach pest and loser - she is still not married at 45 and had never had a boyfriend (she confided in me) before in her life! I should have wised up then, but I never dreamed that she would go after my dh...............
To CC Baby and all the new campers, hang on there. We can do it and it and fight this together.
Hugs,
Ipohgirl
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Traci!: St. Augustine in May Rocks!!!!!!! Yes!!!!! I am so excited!! I can't wait to meet you face to face. You will love my friends that are joining us!
I will post more in the AM. I hosted a group to horse ride at the beach today and then come back to my place for dinner and overnighting in my guest quarters (trailer) at the barn. I am pooped.
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Bold, I'm so sorry to hear about the bronchitis. I had bad bronchitis once and had the same problem with coughing until I wretched. It feels like you are never going to be able to get air in. I had to sleep propped in the corner of our couch. It did damage to my bronchial tubes so that I was very subject to bronchitis returning until I saw an allergy/pulmonary specialist who treated me for a couple of years until things healed up. Be smarter than I was and ask to see an allergy/pulmonary doc right away if your regular doc isn't clearing it up quickly. The medications are pretty specialized and kind of scary so a tough case really needs a specialist.
Anne and the other lymphodemia sufferers, I'm sorry that you have more difficulty to deal with. I don't blame you for being in a bad mood about it.
Ipogirl, they recommend that to continue not getting needle sticks and blood pressure in the arm that had the SNB preferably for the rest of your life. The concern is that it could cause you to get lymphedema.
They don't stop the infusion or transfusion when they do a blood pressure on me. (Did you really mean "transfusion" as in blood transfusion or did you mean the chemo infusion? When I've gotten blood transfusions they take a pressure every half hour but for the infusions they usually just take my BP a couple of of times.) I get my infusion in my port which is in my chest, not in my arm so that may make a difference. I have them take my blood pressure in my forarm. I've found that much more comfortable and the readings seem to be more consistent.
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This thread has gotten so busy I'm having trouble keeping up.
Cali, congratulations on your clean path report!
Simone, welcome to camp chemo, but sorry that you have to be here. Maybe your wig will fit more comfortably after the hair is gone. I didn't get a wig. I've found scarves and hats to be very comfortable.
6 weeks after my last chemo and I've got a pretty good crop of hair about 1/4 inch long all over my head. Unfortunately it is translucent white and my scalp still shows through. I'll be glad when the follicles start putting out hair with pigment.
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Bluedasher,
Good morning! Sorry, I mean infusion since I don't have a port and they do it on my hando wrist. My hand swelled up and hurt enough for me to yell stop the bp, but they continued and just switched off the infusion machine. The pressure subsided somewhat but now, my whole hand is bruised especially at the spots where they took my blood (for checking) and the infusion points.
I checked with my surgeon's nurse just now and she said they could take my bp on my leg since I was lying down in a bed. Or she said to insist on switching off the infusioni machine when take my bp.
I am going to a public hospital and the quality of care is poor. My surgeon's nurse said most people did not know they could request for the above and just endure the swelling and bruises......talk about Asian apathy and timidness in the face of bureaucracy.
Also, i have a question to ask about tattoos during RT.
I read somewhere there are alternatives to permanent ones, which i think is horrible.
Have anyone heardf black light tattoos, sharpie markers covered in clear tape and light brown (instead of the dreadful black or blue) markers?
Also, what interval is normal between chemo and RT? I was told I would need ot wait about 30 days before they start on mine.
cheers!
ipohgirl.
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Good Morning all. I am trying to get caught up a little here before another hectic day starts.
My2boys - so sorry about the lymphdema, It is a reminder that I need to be much more careful. I constantly catch myself doing things I know I shouldn't and I have been putting off seeing the specialist. I will get that appointment for prevention now!
Sailor - I loved "What Cancer Cannot Do" - Thanks.
Simone - Welcome. I hope your first tx is going as trouble free as possible
Blue - you are Right! This thread has gotten so busy I can't keep up either!
I am off to start another day. I have to see off my farm guests and then a small groups of friends and I are riding in a new horse park that has just opened up about an hour's drive from us!
Have a great day. Lisa
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Ipohgirl: My plastic surgeon says you need at least a month after your last treatment before you have the implant exchange surgery--also, your blood counts need to be back to normal, or it will be longer than a month. As far as the temporary tattoos, I have never heard of them. At this point, I plan on having the nipple reconstruction and permanent tattoos sometime later after my reconstruction surgery on June 17th.0
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Ipohgirl,,,,,,,,,,,,,,,,,,,on the tattoo issue. When I had rads,,,,,,,,,the tattos I have are simply very small dots. They just nicked the skin with a lil needle and covered the nick in with a sharpie. And now you can hardly see the dot. They do that so when you go for rads,,,,,,,they can line up the machine just perfect every time. I would think that just by putting a dot with a sharpie and then tape over it,,,,,,,,,,when showering the tape would come off and the sharpie marker might come off. But if they make a little nick in the skin and fill in with a sharpie,,,,,,the ink from the sharpie is embedded in the skin. Do not worry about that as the dot is so very small,,,,,,,,,,,its really no big deal. With your stories about your healthcare,,,,,,,,,,,,,,I guess we should be grateful for the healthcare we have here in the US huh?
I finished chemo on Aug 27, 2007,,,,,,,,,,,,then the folllowing week I had my first radiation dr appt. After that I went back to do the simulation (thats where they set the machine up for where they will be radiating you) and started radiation the week after that. So basically I started radiation 3 weeks post last chemo. Radiation is a piece of cake,,,,,,,,,just make sure you use some kind of cream (I used Miraderm). I did get some radiation burns but they were manageable and healed up nicely,
Have a great weekend everyone. Keep those side effects to a minimum. Be strong.
Cindy
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Ipogirl, I think they were willing to start rads 4 weeks after my last TCH treatment but I started 5 weeks after so that I could go on a business trip. I don't know about alternatives to tattoos. I wouldn't do markers covered in clear tape because I have had trouble with skin reactions to adhesive just having the surgical dressing on for 24 hours after surgery. The tattoos my place did don't bother me. They are just the tiniest little dot. There are three - one between my breasts and one on each side a few inches below my arm pit.
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Ipohgirl: Don't worry about the tattoo's it is such a tiny little dot that you can barley see it. Even then they had to use the marker at times cause the dot looked like a mole mark next to it.
Smile: Don't have to apologize to anyone about being bitchy. You are on chemo and you have every right to. And for that nurse you have a right also not to accept her. I am very fortunate to get good ones, all but once. What's Black Cohosh?
Cakelady: Karen was right, good girl for reminding about the Decadron. It is a steroid you take the day before treatment and two days after. It helps with the side effects. When you take it you will have a lot of energy, but watch out for the third day cause you will crash. That is why most of us do fine after chemo until that third day when the steroids wear off. Have the Thermometer on hand and the Senna/Collace. If you are constipated take 1-2-3- tabs until it breaks loose. When it does it usually goes the other way to diarrhea then you take the Amodium AD until it slows down. Have those on hand. This is chemically induced constipation/diarrhea and worse than normal so you don't follow box directions. Be sure to ask your onc/nurse what is the right dose for you. Drink plenty of water the first days to flush out the chemo from your kidneys. Very important, plus if you get dehydrated you tend to be nauseated. For the nausea most start with Zofran that works very well. It didn't for me then they switched me to the Emend. As stated it is very expensive, but oh boy does it work. One tab before treatment and one tab for two days after. We do not have to have the nausea with this chemo...all the rest of the S.E.'s are bad enough without dealing with that. There are just to many meds out there not to have nausea. Sounds like you are going to have to be your own advocate where you are beings your dr. arn't doing theirs. That is a shame. Stay in here and let us know how you are doing. I wished I was near you to walk through this with you. I am going to become a volunteer after all this is over cause there are just to many of you out there that could use someone to walk with them.
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I think I misunderstood about the tattoos you were talking about--sorry.
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