Taxotere, Carboplatin and Herceptin
Comments
-
Hello ladies. I wanted to wish all the new ladies just starting,,,,,,,a very successful journey. You will find strength, encouragement and some good guidance from this wonderful group of ladies. To all of you ladies that have finished and are either on your way to radiation or surgery,,,,,,I wish you all the best.
You have all gone thru so much and have done it with dignity and grace. A huge kudos to allllllllllllllll of you.
I know I said this once before,,,,,,,but for some reason I had felt compelled coming back here to help give guidance,,,,,,,,,,but you all are doing an awesome awesome job. I just get so inundated with so much email about everyones posts (and I did read each and everyone),,,,,,,,,but I just cant keep up anymore. So having said that,,,,,,,,I think its time for me to move on, but if anyone wants to keep in touch or needs some advice, please feel free to send me a pm or email. Its unfortunate that the posts keep growing,,,,,,,,,,,,as I hate to see new ladies having to go thru this all,,,,,,,but I also find solace in knowing that this discussion board is helping others with this journey. I know when I was going thru treatment,,,,,,,this was one of my saving graces.
It has been a pleasure getting to know you all. Take care of yourselves,,,,,,,,,,,,,live life to its fullest. To the new ladies,,,,,,,,,,,keep your eye on the prize, the light at the end of the tunnel is there and soon it will all be a distant memory.
God bless you all.
Cindy
0 -
A quick note about herceptin - I have had ZERO noticable side effects from the herceptin alone. Of course, I don't know what it may be doing that I am unaware of - but no S/E's bother me. Not even a head ache. I have had 2 H only tx so far.
0 -
OMG! So many posts. This thread is so active the past few days.
Cakelady...I do not mean to disagree with your Doctor but I am sorry that I do. Emend and the other nausea meds are not for other types of "more serious" cancers. (I think bc is very serious??) I think it is about the type of chemo you are getting and the nausea and other side effects that are created because of the chemo. You should not be made to suffer because he does not understand. If you are sick in any way at all you should be given adequate medication to control those symptoms. I feel for you because you have enough to deal with. My only suggestion is to DEMAND that he give you the proper medications to help you through this difficult time. If he does not understand then maybe he will be up for taking a few rounds of TCH and only given compazine for nausea. I hope you continue to do well.
As for the subject of nausea meds I also took something called Kytril. It did help me. It was somewhere between the Emend and the Zophran. I have to say that Emend was by far the best medication I took throughout chemo.
Bold I am almost 4 months out from chemo and 1 month out from rads. I feel better everyday. I will have to post a picture of my hair. It looks like an army cut. I still feel absent minded and it really bothers me. They said it will continue to improve. I have noticed in the past month that my energy level is on the up swing. I found out today that my tamox metabolism test came back normal. I am happy about that and I also had my MUGA and I was told it would be normal. I don't have official word yet, but they went ahead and told me I have nothing to worry about.
I hope everyone is doing fab! Traci
0 -
Ipohgirl: I just busted out laughing at your post to me "Mommy Cupcake" that just hit my tickle bone...Got a ring to it. Yes you keep taking them while on chemo, always as with any advice in here, you check with your own personal onc, but I am sure they will say ok. That is Calcium Citrate with Vit D. I'm going to say something to you with the greatest amount of love and that is you not telling your parents yet. I was thinking of my own daughter and how I would feel if she was going through something like this and not tell me. It wouldn't matter if I was to far away to help, but just not knowing my baby was sick and not letting me into her world would break my heart. Of course I would be upset, that is apart of being a Mother, but I would rather know and worry than find out after it was all over. Just a thought from one Mommy for the other one.
Maja: So sorry for your loss of your sister. I know her memory has been close to you through your journey. I wanted you to know that I also take Herceptin every three weeks, and not like Carolyn that has a bad S.E. of it, I have no problems what so ever. Our new infusion center has personal TV's at each chair and I just have them pop in a movie and I watch it and before I know it its time to go. I do take the Tylenol they offer, but not the Benedrl cause that makes me groggy and I don't really need it. I am sure you will do just fine. Carolyn has had more problems with this whole journey than we have. I think she is the exception. You plan that vacation and enjoy yourself.
Lisa: Maybe you can begin a new trend in the school.?? At least you will show them that your beauty is coming from the inside and not the outside.
0 -
I took the emend for the nausea as well. I don't think it has anything to do with the diagnosis. It worked wonders for my nausea. My doc gave me three scrips for nausea, in case one didn't work, move to the next, etc. Compazine was the third on the list.
0 -
As many of you know, my hospital never heard of Emend but I INSISTED I GET IT and now they're watching me like a hawk while i'm on it so they can start giving it to others.
I took matters into my own hands, and visited another hospital (specializes in cancer) and they actually gave me the 1st script. The symptom management specialist (wow, that hospital actually has one) said specifically that at their hospital they give Emend to all their patients on carboplatin.
I'm good for 3 days on Emend. In the afternoon of day 4, all hell breaks loose and I experience the worst nausea possible. Even Zofran doesn't help. I ended up taking 5 days worth of Emend the last cycle but I think it may have done something to my brain because I was awfully fuzzy for a few days afterwards. Could have been the Dexamethasone since I continued that for 5 days as well. That wicked "I want to die" type nausea seems to break for me on day 6.
I'll be getting my 8th treatment on Thursday. Just letting you know in case you don't hear from me since it takes me a good 10 days before I'm able to get out of bed and speak coherently. The last time everyone was worried wondering why I hadn't posted.
0 -
The new med seem to work today! YEAH!!
majanumba1: So sorry to hear about your sister, I am sure that she is so proud of you for fighting the fight!!
Ipohgirl: Be strong for your friend and just be there, she will need you!
Cupcake: How are you doing/feeling?? You are such a strong woman, I think we have ALL adopted you!
Bold: Hope you had a better day today!
Lisa: I checked your website out: You live in paradise! How beautiful to see horses grazing in the pasture! Of course, I love the sound of the ocean as the waves hit the beach! I am penciling in a trip down that way before it turns cold again!!! I wish I would have known about your ranch when I was a girl scout leader. We were always off to new adventures! From Snow Skiing to swimming with the manatees. They even loved camping (wilderness style). I have to admit, I miss that!! My daughter is now in college and working....even though she is still somewhat attached to my hip, I miss the fun trips with the girls!
To everyone: Smile! Its been another beautiful day! No matter how tired or bad we felt!! We lived another day to see it!
0 -
Gosh - this is getting harder to keep up with so I will lump topics.
For those that are in TCH or any other combo of chemo - Compazine IS NOT ADEQUATE! This is 2009 - there is no reason for you to be sick nausuas on top of everything else! A very clever camp counselor (traci) posted the perfect responce: Give TCH to the doc with only compazine and see what he thinks! Jeezsh!
Cinrae: Wow! You should feel so happy that you have given such support, hope, help, encouragement to so many people. This thread not only helps the patients, but sometimes their support system too. I have really enjoyed your participation lately and I hope you won't totally disappear.
Cupcake: I can say that I have given a little bit of the "real world" to about a hundred or so young people. That must mean something.
Maja: I am so sorry about the loss of your sister.
Mason: Go Lady Go! I am so glad you sought out another facility! Hopefully adequate meds will make the tx more bearable. You know we will worry, but thanks for the heads up. God Bless and I love you lady!
For those that checked my website, thanks! We have fun. I really need to update the pics and I hope to do that this week. Good friends, fresh air, open spaces and a good horse! Thanks for taking the time to peek in!
I have to go back and read. I am sure I missed something. This thread stays so active these days.
Lisa
0 -
Thank you all for the kind words about the loss of my little sis. It was very helpful to me to share that with you,
Mason, thanks for the heads up as we would be worried about you if we didn't hear anything from you for 10 days. I think we all try and keep track of each others tx days and expect not to hear anything for a few days but when it goes beyond that we start to worry. Just like any good fellow camper would! So glad you got the "good" meds and hope that they make your next tx much more bearable.
Cupcake I'm going on vacation!! I am hitting the beach with some girlfriends for a week of sun (not too much) and fun (lots). I can't wait.
Cinrae, thank you for starting this thread and seeing it through. We are so grateful to you for your continued caring and support way past the end of your own treatments. You are a very special lady. Drop in and check on us once in a while.
I am going to bed now.
Maja0 -
Hello Ladies,
Questions about blood transfusion: Where does it take place, oncologist's or the hospital? Once it is established you need one, how soon do you get it? And, how soon do you feel better?
From my perspective, things are not going smoothly. I had to take both Monday and Tuesday off, and Wednesday doesn't look any better. I made it to work on Tuesday, but by the time I got to my classroom I was spent. My lead teacher insisted my husband take me home. I have absolutely no energy. I have been on Neupogen since last Thursday and started seven days of Levaquin on Monday. My radiation site is plum colored and blistering. Whaa, whaa, whaa.
My apologies to those who are going through worse than this, for far longer than I. It's just that I am green horn at not feeling well, and well, I am frightened. I have no experience of feeling this bad--ever.
I cannot believe I am thinking this, let alone writing it, but I am truly hoping that my oncologist will tell me that my RBC are low enough for a transfusion.
Here's wishing all a better, brighter day.
Cloud
0 -
Cloud, If you need a transfusion, it will make you feel so much better. The trigger number varies some from doc to doc, but below 8.2 for a person as young as you is norm. In my case, they sent me to the outpatient senter iin the hosipital to get crossed and typed and then I went back to outpatient the next day for the blood. I got 2 bags and it took almost the entire day. Got there at 8:30 and left around 3:30.
Don't be frightened, unfortunately, feeling like crap is part of the package. I hope you feel better when the sun comes up this morning.
Lisa
0 -
Smile: You are welcome over to ride anytime. I actually have some riding buddies in your neck of the woods and we are organizing a "girls out/horse camp" for October.
0 -
I havent stepped foot out of my by yet, but I can say that the nausea is GONE!
Lisa: A Girls out/Camp.....that sounds like a good time with great friends....my girls night out usually consists of happy hour with the girls! Not much of that going on these days : ). Not its game night on my good weekend, which is alot of fun TOO!
I should finish with Rads mid August....and a group of us are planning a trip to Fantasy Fest in Key West for Halloween weekend! We went last year for the first time and had a great time! I love to people watch...and boy was there a lot of strange ones to watch! Now none of us in my group did not participate in the body painting and from what I saw a lot of them should not have either...LOL!
Wishing everyone a bright SUNNY Day! Even if it is raining/snowing where you are!! Chin Up, Head held high....we are beating this BC one day at a time!! SMILE!
0 -
Congrats Shari on kicking that nausea in the butt! You sound wonderful- like a completely different person. Just like I have been feeling all week. Isn't it amazing how your perspective can drastically change? There is absolutely nothing worse then that constant, overwhelming nausea.
I'm on my last week off before I start my LAST round next week. Last week at this time, I TRULY thought of throwing in the towel. Just could not comprehend how I could bring myself back there. Now? Well, bring on those last 3!!! They just bring me to the end of the worst part of this journey!
So happy you can live up to your name now!
0 -
CaliforniaCloud, if you need a transfusion just get it. It helped me right away. I had a total of 9 units over my tx and rad tx. I am hoping it is the last now but when you get so weak and makes your heart beat fast and you are dizzy you just want it gone. It depends on your blood type and if you have an antibody on how long it takes to get the transfusion done. Most of mine were done the same day in the hospital which was an outpatient thing. they have a special wing for that where I go. It does take a while to get 2 units because they have to keep track of blood pressure and temp. I developed an antibody the time before last so it took 2 days for them to find my blood. My brother had antibodies too and they took a week or more to find his blood. I never found out what antibody he had.
Maja, I lost my brother too. He died this Jan. He had tongue and neck cancer but he was fighting it with all he had but it was just too aggressive. he had other problems with his health too. I know you miss your sis just as as I miss my brother.
Mason, I hope this time it is easier on you. I do think about all of you still going through this tx and hope for few se. I did have more se than most and it always took me 2 weeks to feel like I could eat something. Hang in there and hope to hear things are easier for you this time.
gramma23
0 -
Cloud, they gave me transfusions in the same infusion center where I got my chemo. Getting one required going in for a blood test to do the typing. The typing test had to be done both times (even though blood types don't change but I guess one could develop new antibodies). The first time they had two phlebotomists each draw a sample. When they do the typing test, they put on a wrist band that I had to still be wearing when I got the transfusion.
I got transfusions twice. Once it was the same day as it was ordered. The other time it was the next day because chair time wasn't available at the infusion center for the same day. I felt better almost right away.
There were times during chemo when I felt really tired and thought the blood test would show that I needed a transfusion but my counts came back too high. Some chemo tiredness is caused by the anemia and some isn't.
0 -
Hello Bossom Buddys:Everyday I have slowly felt better. I cold even make some squeaking noises this morning. It has been very cathartic not being able to communicate for 4 days. By tomorrow I should be able to speak my mind. (I think my DH and Cat miss my humor and singing) (wishful thinking). 2 weeks till the final round. BRING IT! I can not wait to get back in the yard and enjoy the fruits of my labor. There are other things that I have out off that I look forward to tacking too. I need to have a major Garage Sale. Since being DX I realize that I hold on to way much stuffffff!
Rekoz: You are doing it girl friend! Your right this is the hardest part of the journey. I like your attitude.
CAcloud:I sure hope that you get your game back. I know that as soon as you get the transfusion you Will instantly get energy. But more than that I hope that your body corrects itself naturally and permanently.
Maja:I lost my brother also to kidney cancer. It has been five years now and I still think of him so often.He was only 49 when he died. What a world. Sure makes you appreciate the now.
Lisa: Enjoyed your website. Thanks for all your encouragement.
I am going to try to get somethings done today I have been down for so long everything needs attention.
Love to all
0 -
Bold - I am glad that you are feeling better each day. Keep on keeping on, right?
ReKoz - See how quickly this time passed? You sound "recharged" and ready to go. Good for you.
Shari - I'm glad that the nausea has subsided. I hope you are able to keep it at bay.
Cloud - I never needed a transfusion, but at one point I almost did. The doctor told me that the transfusion would take place at the cancer center where I get my chemo.
Cheryl/Mason - I hope that you don't have that nausea again this time around. Are you going to take the Emend for more than 3 days, or just stop at 3? Even though you are going to be away from the board for a few days, I will be thinking and praying for you to make it through this TX with no nausea. Stay strong, my friend.
Cupcake - You're Mommy Cupcake now!!! That is hysterical.
Lisa - I have had no side effects from herceptin either....just a headache for a few hours.
Ladies - When I was at physical therapy yesterday, I noticed a very fit looking woman staring at me and I was thinking that she had "no clue" as to what I was going through. She and I got to talking and it turns out that she is a cancer survivor (6 years out) and she was HER2+ too. She had about a dozen positive nodes and she was told that she could not get herceptin because it was not approved for anybody but Stage IV people (at that time). She and her doctor did what they had to do to get it for her (she was a stage 3) and she went every few weeks for a full year of herceptin. She has had no recurrence of the disease and she looks just fabulous. There isn't an ounce of fat on her and she looked great in her workout gear. She also told me that she has lymphedema, but you would never know it. She said she manages it well and it really isn't a problem for her. When I had to leave, I gave her a big hug and a warm smile. Anyway, I thought I would share this with you all. I felt so hopeful and happy for the rest of the day.....today too.
Stay strong ladies.
Much love,
Anne
0 -
It's so hard to lose people we love to cancer especially when they put a courageous fight. My niece passed away Sat. night after a 2 year battle against cervical cancer. She leaves behind a husband and two boys 5 and 3. Beside fighting cancer, teaching school and running a home; she was able to set up a foundation to help women with the cost of cervical cancer. She was quite a woman and we will miss her.
Smile, I am so glad you are feeling better there is nothing worse than being sick!
Lisa, the pictures are beautiful. About 25 years ago (seems like yesterday) we were given 5 horses in a divorce settlement (not ours but a friends) We loved having them and riding them but they needed a bigger place than we have so we give them to the 4H office. They used them with kids for 4H projects. The kids loved it and I like to think the horses were glad to be there too.
#2 treatment is tomorrow I will be really glad to get one more behind me
Have a great night! I am on steroids today so will probably be writing again around 2a.m.
Karen
0 -
Karen~ I am so sorry to hear about your niece. It sounds like she was a wonderful person. I hope treatment #2 leaves you with no SE's.
0 -
Karen, so sorry about the loss of your neice, she sounds like an incredible lady.
0 -
Six weeks from today I should be finished with my treatments--Hallelujah!! My DH went with me for my treatment today, and we were in and out of there in about 4 hours today. My blood work looks great, no anemia--which is common--my kidney tests came back normal--they have to check them because of my carboplatin (chemo). My port continues to work really well for the taking of blood and the giving of the infusion, so I am very thankful for that.
I continue to be so thankful and blessed by all of the things, people, prayers, etc that the Lord continues to provide. He will never take me on this path and desert me, and that is a wonderful feeling. I ran across this little poem in a book called Streams in the Desert. I hope you like it.
His Way
God sent me on when I would stay
("Twas cool within the wood);
I did not know the reason why.
I heard a boulder crashing by
"Cross the path where I had stood.
He had me stay when I would go;
"Your will be done, " I said.
They found one day at early dawn,
Across the way I would have gone,
A serpent with a mangled head.
I ask no more the reason why,
Although I may not see
The path ahead, His way I go;
For though I know not, He does know,
And He will choose safe paths for me.
from Sunday School Times
I hope and pray for manageable side effects this time. So far, if I act early enough there is medicine to help with whatever I need.
We look forward to a week here in Raleigh, time with my parents, a day at the Masters with my sister and brother-in-law then about 10 days at Easter to celebrate the risen Lord. Thanks again for all you do to support me through this time.
0 -
Dear Ladies,
My stage 4 friend will see an onco this morning. She should get her path results by next week. She has agreed to me accompanying her to see a private onco before embarking on any treatment programme. Finally, she seems to have come to face it head on. I am so relieved and hope she will get the report next week before my third chemo commences so i could go.
Majanumba
I am so touched to hear you share so intimately about the loss of your little sister. We live in a imperfect, unjust world where our loved ones are often snatched away for no seeming reason. Your little sis was so courageous in the sense that she did not panic nor fight the reality of her illness - she accepted it and got on with life. I believe it is better to go than undergo immense suffering and pain as I have seen many a friend go thru the trials.
I hope you enjoy yourself on your hols
Mommy Cupcake,
Thanks for info about vit D. I have been struggling about when I should tell my parents - they are in their seventies and and my grandma is her nineties. If I tell them now, they would want to fly over immediately - then again we cannot cope with taking care of them in HK - we can barely cope ourselves...........so my plan is to go home during the summer hols after the chemo is over and tell them in person. It is hard - i wish my mom was here with me - but circumstances do not let me choose what i want. I dream of eating all the home favourites and am really looking forward to that holiday at home where I could tend to the tropical flowers and plants again. And yes, Cupcake, if it was my daughter , i would feet pretty hurt that others knew before me........
My 2 Boys,
Thanks for sharing the story about the six-year survivor. I am much encouraged by it. Another drug Tykerb and Suntinib is now also offering much hope to the stage 4s. I pray that new medical discoveries be speeded up and am cheered by Obama's new initiatives in funding research.
Lisa,
I am visiting your farm someday - it is fab and only a dream to most of us. How lucky you are! My daughter loves horses and animals - but coz we stay in an apartment, we could only keep a tortoise and some goldfish. I will show her your homepage next week during the easter break. Maybe I should send her to your farm for a summer break to learn about horses!
I am happy to report that Cycle 2 have been very good on me - asides from slight nauseau on first and second days, no bone/muscle pain was there. Still couldn't sleep for the first few days though which made my mood foul - i shouted at the children again, but they were resilient this time and did not pay much attention to their mum.
I was able to go out yesterday to buy some plants and get some retail therapy - got some t-shirts for summer which cheered me up immensely. Good appetite since i could cook myself again.
I wish everybody a good day and hang on, dear comrades in this battle against BC
Hugs,
ipohgirl
0 -
Helen, that is a beautiful poem. Thanks,
Lisa
0 -
Bold - I am glad we heard from you. Keep up the good work and you will be back in the garden in no time! Hey! Did you hear The Guiding Light is being cancelled! 72 years!!!!
Mommy Cupcake! - I just love that! He he!
Anne - Thanks for the story of the "fit" survivor! That is an inspiration for us all.
Wai - You and your daughter are welcome anytime. I would love to visit your homeland and sample your cooking. The foods you write about sound wonderful. But, I agree, you must tell your parents about the BC. They will be so hurt if you don't. Just explain to them that you will visit in the summer, but it would be easier on you for them NOT to visit you right now. And yes, retail therapy always helps!
Smile: The October trip is to the Withacoloochee Forest - That is minutes from you! Can I put you on the list?
Helen: You are almost done!
Night time for me. I am riding tomorrow. Just me and my best girlfriend at one of my favorite parks. We always have a good time together. She has been a rock during the past months.
Have a great evening ladies. God Bless you all.
Lisa
0 -
Bold- Happy B'day. I was 55 on 3/2. I did do Mammosite and it was great. Too bad most of you couldn't do it. Piece of Cake!
0 -
Lisa: I would love to go! Let me know the dates and I can confirm with you!! Soooo excited!
Today I go for Herceptin only....hope I dont have to tell that one nurse...your not sticking me, but I wlll.
Wishing everyone a great day!
0 -
Shari I hope you get a good nurse. I couldn't imagine getting stuck everytime
I whine whenever I have to get stuck in my port. I am a sissy when it comes to needles and I have had 21 needles since this crap has started . I am lucky I only have to go every 3 weeks to get my herceptin so I get it with my TC. Helen~ I am 5 days behind you and I cannot wait to be finished with Chemo.
I am ready for my next treatment especially if it brings me closer to being finished with the TC part of this.
0 -
Karen, I am so sorry that you lost your niece. She sounds like a remarkable woman. I am thinking about you.
Wai, thankyou so much for the kind words. You have a kind and understanding spirit.
Duneoaks, your faith in god will see you through. The poem showed me that.
Lisa, you give us all hope.
Bold,, you always find the best in a situation
Bluedasher, you find solutions.
Cupcake, you are wise beyond words and the Mom of our group
Gramma, you are so honest and willing to share
Mason, you are our warrior princess.
Anne, your story inspired us all and showed me that just when you need it an angel appears ie. the fit survivor
Jamieh's gonna get er done!
Smile, your name says it all
Cloud, you always think of others even when you are in pain
I am so glad that you all are a part of my life.
Maja0 -
I went for my first herceptin only infusion yesterday. No s/e, thank God. I asked the nurse if she has ever seen someone come back with another cancer or recurrence of bc after getting herceptin. She said she has not. Good news for all of us lucky enough to get this remarkable drug!
0
