Taxotere, Carboplatin and Herceptin
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Sanaisa - I'm glad that they figured out that it was the heart thing. I was going to suggest that it might be the steroids but then looked at when you were having the symptoms and thought that it was too long after them to be that.
I wouldn't want my experience with the bisphosponate to discourage you from joining the trial. Most people seem to do fine with it. I guess my body didn't handle the drug as well as others. If you start it and it causes difficulties for you, you can drop out of the trial.
Weety, I never had the IV steroids. I was prescribed 8 mg twice a day from the day before chemo to the day after chemo. After a while, I asked if I could try reducing the dose and tappering off because I wasn't sleeping at all while on it and then would crash a day or two after I stopped it. Then I took 4 mg twice a day the day before and the day of chemo. On the day after, I took 4 mg in the morning and then took 2 mg that evening and the next morning. I weigh a lot more than 100 pounds so maybe they would let you try cutting your dose in half too.
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Hi Weety...I will be changed to 10mg the day before, 8mg the day of, 6 mg the day after, 4 mg on day 4 and finally, 2 mg on day 5... I weigh 115# pounds, so it sounds like your dosage may be right. Decadron definitely affects the ability to sleep...so don't be afraid to ask for a sleeping aid for the days you take it, as it does boost your energy level (the Decadron can make it difficult to sleep at night). If you have problems, be sure to let your doctor know (unlike me, who thought it was all in her head!). There's some funny ladies on the TC string that go into quite a jest about the manic effects of the steriods...my goodness! They are not kidding. It's more like a steriod buzz! Get your mask and cleaning gloves on...you just might need 'em! I was prescribed way way too much, and then I had an IV on top of it. I am hopeful that next round of chemo will be more tolerable (I hope!). It's gotta be better than what happened, and I blame it 95% on the steriods.
Thank you bluedasher...maybe I will reconsider the biophosphonate trials...I am just IV shy at this point!
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I used to want to rearrange the furniture on steroid days. That NEVER happens. It was pretty funny.
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I used to drive my hubby nuts when I was on steriods.
I never took any orally. I only had 4mg's the day of , in my IV. At that time I weighed 120.
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Oh yes I did too plus pills for a day before chemo and 2 days after and I wanted to paint the house with my energy at 2am and yes I wiegh allot more than i did before its the chemo and steriods I actually eat healthier than before but the wieght doesnt want to leave its scarey....I do excersize too but it stays with me anyone have suggestions like a diet drug????
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Enjoylife, I have found that I have to be much more diligent in my dieting now than before chemo. Due to the herceptin and its ability to harm the heart, I would NOT take any diet pills. Heaven only knows what is in some of those things. I went on a very stringent "healthy" diet a few weeks ago and ended up in the hospital for 4 days. It was not the diet's fault, but the diet did push me over the edge. I am now practicing old fashioned portion control. I have lost seven pounds with 14 to go.
Today is my next to last herceptin - Skippity doo daa, this is almost over!
Have a great day ladies.
Lisa
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Lisa, I am glad the Herceptin is almost over for you. Are you still taking the Tamoxifen? I know I have to watch what I eat now since I am feeling better. After the Herceptin got out of my system I think I started gaining. I was not eating much because of the bad taste it gave me but my taste buds are back. I still want milk a lot so I have to have skim milk. I have not gained alot but not working as much as I did lets me put it in so I guess I had better get more exercise. I am still smaller than I was before cancer though.
I am probably the only one who liked the steroids. I take them regularly anyway because of arthritis. I just had my shot last week that I get every 3 months and it has helped some. My arthritis really got bad once the steroids was out of my system and I looked forward to them to help my pain. I am not sure what I got in IV but I got 4 mg decadron the day before, day of and day after. then the pain came back. I am so glad I am not taking the chemo now. I feel for all of you who are. I just wish I had my port out but I had so many lymph nodes involved I guess they want to keep it in. It gets flushed every 6 weeks now and I am supposed to get blood tests ever 3 weeks but I am thinking I may skip this time. I think if I didn't know my red blood count was down I would not feel bad. anyone understand this thinking? I am also not real happy about getting Procrit now that I am off chemo. It clearly says not to give it after chemo but they have still been giving it to me. I think I will see how low it will go before another one.
Carolyn
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Congratulations, Lisa!!!!
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gramma23 ~ what do you mean, "I am also not real happy about getting Procrit now that I am off chemo. It clearly says not to give it after chemo but they have still been giving it to me."... my gosh!? Please talk to your doctor about this?
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Back to "Normal"
In the "pink world" there is no such thing as "normal" anymore. We refer to the collective activities of reclaiming our lives, ourselves, our time, our energy, and our bodies as "the new normal."
Nothing will ever be the same again.
When I'm home at night, without the prosthetic on, I sometimes "itch" and go to scratch a breast that is not there. Mostly this makes me laugh, but occasionally, I get a little wistful. I think my surgeon had it right when she said that I should wait to remove the other breast, if at all. The mere presence of one breast makes losing the other one a little less emotionally traumatic. It's my "security boob." LOL!!!
I'm still on track to have my radiation simulation on 10/5/09 and hopefully start rads on 10/12/09.
I still go to occupational therapy twice a week to have my left arm tortured, but it's working and my range of motion has vastly improved. I graduated to tossing-the-ball exercises today!
I found a way to arrange the pillows on my bed so that I can sleep on my stomach again (propping up the flat side). I sleep so much better now!
Lately I've found myself really craving crushed ice. So I went to Bed, Bath & Beyond and bought an ice-crushing machine. Got it home only to discover that it only crushes one ice cube at a time! If I can find my receipt, it's getting returned. I'm going to try the blender I got from for my birthday this past April. I think that might be too MUCH just to crush ice, but we'll see.
Fruit juice (especially Welch's Grape, or V8 Fusion Pomegranate Blueberry) over crushed ice is incredible! It's like a crunchy, juicy, icey, bowl of fruit! YUM!!!
My hair is starting to grow back in! It is fine, gray, downy hair right now, but it's coming in even and I'm excited to see what it will become! Right now, I'm doing a fine imitation of a baby goose (gosseling) LOL!!!
I've started a few more knitting/crocheting projects, and that has me happy. My October is shaping up to be a great month of craft projects, workshops, and other activities that make life more interesting in general. Activities that brought me happiness prior to cancer plus some rads and doc appointments tossed in must equal the "new normal."
I'll be back at work 3 days this week. Trying to ease myself back into the swing of things has been a bit more challenging than I expected.
I've started taking Viactiv (calcium & vitamin D) chews in a delicious chocolate flavor, Centrum Multivitamins (chewable), and will start on Biotin tablets soon to assist with the re-growth of my hair & nails. I take the diuretic and potassium as needed.
So that's all the news that fit to print from the last few weeks. Phase 3 is rapidly approaching and I'm ready!
Alaina
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Alaina, sounds like things are coming along for you with a few adjustments. Life will never be the same as before cancer but that does not mean it will not be just as good and maybe better at a later date. I am still waiting. Going back to work was more than I could handle but not the work but the people they hired to take my place. I quit again but they wanted me to work a little just in case they lose someone I guess. It helps the pocketbook and I do like seeing the people that are customers. I like crushed ice too but you can buy a big bag at Sonic if you have one where you are.
Sanaisa, I read alot about Procrit and I have decided unless I am really low on red blood cells I will not take anymore of it. Like you say it clearly says not to give it after chemo is over. There again blood transfusions have a risk too and I had 9 units while on chemo. I get really dizzy and feel so tired when my count gets too low but I was low when I started chemo so maybe that is my normal. Everyone is not meant to fit into the same group of numbers. I am going to see how low it gets before Procrit and see if my bones will start making it. Of course I will not risk my life but at some point my body needs to make it's own blood cells or something more is wrong. We need to know what is wrong that it won't. I may be very wrong about this but right now it seems right. Good luck to you. Do you have arthritis or an autoimmune problem? the doc thinks that is what is causing my problems with blood count since I was like that before chemo but then I had surgery so when did it become low? I need to check with my PC to see if it was low when they did the CBC last. I have had a urinary infection lately so I am sure my blood test would be crazy on Wed. so I think I will skip that one.
Carolyn
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Just checking in. Went to Tampa today for Herceptin #3. All went well, then up to Morsani Center to see my surgeon. I'm only 9 days out of surgery so not quite ready to have the drains removed. I'll have to make another trip back to Tampa early next week for that, but no big deal. I'll just be glad to get rid of these appendages. :-)
The BEST news was the pathology report. Right side 1 node removed, no cancer. Left side 14 nodes removed, no cancer!!!! Tumor from left breast...No CANCER!! The TCH killed it all!!! All the SE's of TCH were worth it. Gals, hang in there and do what you've gotta do. I'm now at 80% for non recurrence and will be at 90% when I finish radiation. Life is good! God is great!
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Swampy Great news!!!!!! Those are fabulous results!!!! Yippeee!!! Life is good and God is great! When are we gonna meet up for lunch?!
Gramma, glad that you are doing well. I always think of you, You continue to be a great mentor on this sight. God Bless you. Just keep on your docs about your side effects and aches and pains. You know what is right and what is wrong.
Lisa
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That is great news, Swampy!
Becky
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Swampy! Excellent results!!!
I too was on TCH prior to surgery, and there was no sign of cancer in my breast tissue nor in any of the 22 lymph nodes they removed! TCH is the BOMB!!!
Continue to take great care!
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Swampy, great news about the cancer. It is a comfort to me knowing this stuff will kill the cancer since I had a lumpectomy and I wonder sometimes if it got it all. I had the lump, sentinel node and 22 lymph nodes removed. when the surgeon talked to me he acted like he just was not sure he got it all. I think that is what has been in the back of my mind for a while. I have wished I had a double mastectomy several times. I was not given this option or any other than what the surgeon wanted to do and I guess I was in too much of a shock mode to think about asking. I am glad you are doing so well. You will be through with the Herceptin before long and you will feel better all the time.
Lisa, thank you for your kind words. You too are a great mentor. I wish more would hang in here for a while and encourage these women to let them know it will be okay but I know also that they want to put it behind them and they have jobs and family that keep them busy too. I can't run any races like some do so this will be my race to encourage anytime I can. You know people tell me they had cancer and I am so surprised sometimes because so many have gone through this. It feels like a person is by themselves but they are not. A lot of women are out there and you just don't know unless they say something. I love my customers, men and women both are so encouraging. I just wish my hair would grow! A woman came into the bank this week and she was so happy to see how my hair had grown but I just can not tell it is. I guess it is like your children you are with them but a person who has not seen them in a while can tell they have grown. It is covering my head though so it is okay especially in the hot weather. I may have to go to hats when it gets cold though.
Have a good day everyone.
Carolyn
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Swampy, I'm doing the happy dance for you!! Wooo Hoooo!
Alaina, love your attitude about everything.
Carolyn, my hair's not growing so fast either. It's thick but not growing longer at all. Folks who finished chemo about the same time I did can at least spike their hair by now. Not mine. Still waiting.
I've decided to have a 2nd mastectomy. I had just a bit of clear discharge from my remaining breast and when the oncologist said she's not that worried about it but the next step would be a test where they put a needle in the nipple (with no anesthesia!), YEWWWWWWW I told her I'd rather have another mastectomy. She said sure and I could get reconstruction too--something I didn't even want to consider first time around. But if they're going in there anyway, might as well have some expanders put in. I've heard of soooooo many problems with them though. One website says expander implants have a 50% complication rate!
But I'm tired of being lopsided and unable to go without a bra. After all, I'm from the 60s!
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Wonderful news Swampy! I'm happy for you and for all of us. Those of us who got chemo post surgery don't have any tangible way of knowing whether it worked so it is cheering to hear how well it did for those who had it neo-adjuvant.
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Swampy your life is ahead of you and cancer is behind you!!!!!!!!!!!! Congrats
I have a question for grads. I went yesterday to get my 14th herceptin. I am 5 months post tch. My white blood count took a dive!!! It is now 3.5. The normal range is 4.8 to 10.8. The new facility that I when to City of Hope does not do the differential ie mono, lympho, baso, etc...... Anyway they did not mention this to me. I ask for a copy of my test as I was leaving. Thats when I say it. I have been very fatigued of late. I wonder if this is why. It can be a sign of pernicious anemia and other scary stuff. The only way to tell is further test. GRRRRR why did they not note this when I was there? Is this normal? Meaning is there a rubber band effect for nurlasta this far out? Well I will call. That should take an hour or so to get through to anyone with a brain!!! Sorry. I just get frustrated. Yesterday I had to be at C. O. H. at 12:20 am. I did not get out of there till 5:45. That for just Herceptin and a Doctors 15 Min's with me. They give herceptin over 90 Min's. I am use to 30 Min's. What a day and then this. Oh well (breathing) I am sure everything is OK. I disinfected all the door handles and keyboards etc... As this is more susceptible than I was during chemo.
Anyone experience the drop in WBC? Thanks Sistahs.
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My lab test results say that the normal range for WBC is 3.5 to 12.5 K/uL. I don't think that 3.5 puts you at terribly low immunity. Mine does seem to be a little depressed while on Herceptin because it has been running around 4.8 for most of the readings though it has occasionally popped up from there. My tests pre-surgery and pre-chemo were about 8.
Sorry treatment is frustrating right now.
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There are always test after its over if you have a good doctor they want to draw blood for the 1st year anyway every 4 months to watch markers incase something is going on we dont know about and I am 1 year out of chemo and it will be a year in April out of herceptain I feel great but its good they check on us cancer is a sneaky devil if I could kill anything I would it I would have the new man or woman come on the tv and say there is no cancer and there will never be again but I have to get off the yellow brick road and pray for our best ladies... I still have to wear a ball cap not enough hair from Taxotore but it seems to be growing ...
Happy hair growing days ahead..
Maura
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Bluedasher if I spelt it right you will be so surprized how fast your energy will come back and you will feel stronger than befor BC now I have my age I have to take into consideration I am after all close to the 60 mark and proud of it 58 soon but you will spring right back when some of the poisions come out of your system
Maura
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SWAMPY- wonderful wonderful news. i am so happy for you! *doing happy dance*
God really is good!!!
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Finished with chemo! I had TCH #6 yesterday. Back in the spring I thought that day would never come. Feeling pretty good so far, but I'll really feel good once I've made it through the weekend. Thanks Bold and Amylstrong for answering the question I asked a few weeks ago about when radiation starts. I have a consult with the radiation oncologist Oct. 8th. When I made the appointment they told me the actual rads would probably start between 3 and 4 weeks after the last chemo. Will be starting the every three week Herceptin a week later. That will go until next June for me.
It's so good to get on this thread and hear all the good news. And for all of you who are struggling so much and have so much more to deal with, know that there is a womderful group of women keeping you in their thougths and prayers.
Becky
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EngTchr: YAYAYAYAYAY. Congrats on making it through. Hope your SEs are minimal this time.
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Congratulations to all who have finished treatment! I don't post often but continue to follow this thread daily!! One more chemo to go in October and then on to Herceptin until July.
EngTchr: Your diagnosis is basically the same as mine although my tumor was over 4cm. My question is did you have a lumpectomy? Wondering why you have the radiation?
Can any of you tell me how long they run your Herceptin for? I have always had it dripped for about an hour and than last treatment they pushed it up to 30 minutes and couldn't give me a good reason why except that it can be given that quickly. Seems odd to me that they would change it on tx5 and wondering what to expect for Herceptin only tx's.
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Giving you a warning watch your hair process from this Taxotore my hair has lost some hair folicles and not coming back full as it should write down all your dosages etc and if you have a problem dont stop see a derm. to clarify if the folices are alive I am 13 months out and I have a problem from the Taxotore and cannot get into a derm. until december watch closely and keep info handy I didnt
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EngTchr, congratulations on finishing the hard stuff.It does seem never ending but it will and things will get back to a new normal. I am not going to say your old normal because I find a lot has changed for me but really not a bad way. I hope your radiation goes quickly for you. That was hard going everyday for 7 weeks but I had a couple of days off in there because of ice and other things. H only is not too bad but of course I had the bad taste but not as bad as the other. The last 3 tx I had to have them run it over a longer time because it was causing me some reactions. Not sure why.
Blessedby4, I am not sure why they gave your H longer and now are giving it faster but you can do that unless you have side effects. If you do then insist on getting it longer because it helps to slow things down. After I had radiation I had a hard time swallowing and then when I took the H only it made it worse. I still have some problems when I swallow. the radiation nurses said it was normal. I don't know but I guess only time will tell.
enjoylife,my hair has filled in just grows slow although a lot of people that I have not seen in a while have told me it is growing so I guess it is. I want my hair back like it was now. Well, I am hoping no more chemo and I am cured at least and will take what hair I have. My eyebrows are still not great but then I used to complain about them being too thick. I guess be careful what you wish for! My eyelashes are growing some and have gotten past the time they are sticking into my eyes I guess. At first it felt like they were growing back into my eye and very painful but it is much better now. I have not had great eyelashes since I was a child and they all fell out then. Nerves they said. I think I had fibro then.
I hope everyone is doing good or at least not too bad.
Carolyn
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Carolyn, thanks for the congrats and upbeat message. So glad to be finishing one thing and moving on to the next. You have been a rock for so many of the women on this thread!
Blessby4, I did have a lumpectomy. My surgeon said radiation is considered standard treatment after lumpectomy. I did chemo after the surgery because it was IDC. Didn't want any of those bad guys floating around in my bloodstream, or whereever they go. I'll be continuing with Herceptin, too. Not sure what else at this point, but I see my med onc next week.
Someday it will be nice to look forward to weeks with no doctor's appointments!
Becky
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Swampy....Great news!!!
Eng Tch...Congrats on your last chemo!!
Blessed....They have always ran my drip for H at an hour and a half.
Update on me....I had my herceptin #10 last Monday and I am now done with regular rads and had one rad boost today, only 4 left and rads will only be a memory for me!! I am almost 13 weeks PFC and my hair is an inch long. I am still wearing my wig in public, I will probably ditch it soon and start wearing hats. My eyebrows are back now and I even had to wax them the other day!I have developed some mild lymphedema in my arm (due to the rads) and will start therapy next week. Take care everyone!
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