Taxotere, Carboplatin and Herceptin
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Watching each of you on your progress and you are doing so well. The elder campers have turned into wonderful counselors for the new ones coming in. You new campers are taking each step bravely working towards your completion badge. Hang in there it will be a distant memory soon.
I wanted to bring a ray of hope to those of you yearning for hair. I just got back from my first hair cut! I am five months away from the last chemo although I still take Herceptin every three weeks, but no SE's from that. WOW enough hair for a hair cut. Not like it was in the beginning, but it is getting there. I had the girl cut it short as in one week I go into surgery for that Colostomy take down. For you new campers I had constipation so bad that one my very first chemo I perforated a bowl and had to go into emergency surgery and have a colostomy bag put on that they are going to reverse it now and put my bowels back together. Don't panic, yes the constipation and diarrhea you have now is chemically induced and you may THINK you are going to bust something inside like swamy. I was a little different in that one time I had Diverticulitis so had a weakening of the bowel and that is why the constipation perforated the weakening spot and it blew. But there is a warning for any of you who may have had Diverticulitis in the past that you have to be extra careful. Alert your onc so you don't have to have the same thing happen to you. For the rest of you drink that fluid until you think you are going to drown...keep fluids moving those first few days because the third day you may not want to as much. I just wanted you to know the hair will come back. I have pictures of my bald head to remember those days and when I want to complain about a bad hair day I will just take that out and look at it.
Have a great week...be happy...don't worry
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Thanks Cupcake & Maja for the encouragement. I have my end of treatment "prize" but it requires surgery and then hopefully a vacatiion to sunny Fl. for some family fun at the beach.
I feel human and am almost ready for round #5. I have been eating like a pig trying to gain weight back and just enjoying whatever I can find that taste normal (mostly veggies). I have also found that now that we have had a break in weather getting out has helped me a whole lot even if it just means sitting outside. I went to the LGFG class and I can't say I am any better at drawing in eyebrows than what I was before. I did laugh a lot because some of the coloring that I tried on made me look like a call girl so it was a good class for some laughter
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Cupcake7-
Your story of constipation and bowel perforation is interesting! After my 2nd TCH cycle, I was having diarrhea (as I had had for 2 or 3 weeks) and right-sided abdominal pain. My side ached a little bit every time I rolled that way but I would not call it acute abdominal pain! Wasn't running a temperature or anything other than "normal" chemo side-effects. But I called my oncologist who sent me to the ER. After an abdominal CT scan, they found that I had pseudomembranous colitis with a severely inflamed colon. This had actually gotten worse by taking Imodium because it trapped the toxins made by c. diff bacteria in the colon where they could cause damage. I almost ended up with a colon resection. Actually I ended up with an 8 day hospital admission with iv hydration, antibiotics, 2 units of blood etc.
My lesson for the remaining chemo treatments was to call the oncologist when something seemed to be even a little bit wrong. Profuse diarrhea should not be just treated OTC with Immodium for more than a day or so without further investigation. If Immodium is not stopping the diarrhea in 2 or 3 doses, then you need to call for more advice, especially if the diarrhea is explosive or smells "bad". It doesn't cost that much to do a stool culture test. I guess you learned the same lesson with constipation - it can sometimes not be just a minor side-effect. Thanks for sharing your experience!!
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Went to Look Good Feel Better today. Got one great piece of advice: You can use eyeshadow instead of eyebrow pencil to draw in eyebrows. You can do it with one of those Q-tip like applicators that you buy in bulk at drugstores that have one end with a pointy tip and one with a very flat tip. You then brush it a little to soften it. It look real natural and is easier to do that with the pencils. Or is this something you all already knew?
We got lots of make-up goodies. We all had a lot of fun and everyone seemed to participate actively. Lots of laughter and joking. We also shared some of the silly or thoughtless things people have said to us upon hearing of our diagnosis. I haven't had much of that, but I did learn a few wonderful retorts--even though one might never actually say those things out loud. Also tried on wigs and scarves. That was especially helpful for women who entering the process and have not yet lost their hair. It was also comforting. This was the first time I have hung out (physically, rather in cyberspace) with a group of women being treated for BC. I felt like a real expert--and lots of my expertise comes from you all rather than from my own experience. Stayed afterwards talking with a woman who starts chemo on Thursday and who is really anxious (and thus eager to get her hands on that Ativan). I was able to tell her that this is DOABLE, just like I have been told over and over by the experienced campers here.
On to number Tx5 in the morning.
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Sailor- I love what you said:
This was the first time I have hung out (physically, rather in cyberspace) with a group of women being treated for BC. I felt like a real expert--and lots of my expertise comes from you all rather than from my own experience.
That is SO true! Just about everything I've learned has been from here or from referrals to other sites from one of our sisters here. The further along I've gotten (whew!) the more I realize how unbelievably important this site has been in my journey. I truly can't imagine how different this experience would have been without it.
Thanks for really bringing that home and thanks everyone for your good wishes.
HUGS to all!
xoEllen
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Good point Janet and thanks for sharing your experience. For once in our life we really need to be our own health advocate in all this and not just la la go along with everything. You are absolutely right, if something feels wrong have it checked out. Better to be wrong than sorry you didn't. This is the strongest group of women I have ever met...0
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Cupcake: A real hair cut! How cool!! I am 10 1/2 weeks out and still in my baseball cap. I am keping the cap until my scalp doesn't show. I am guessing about 2 more weeks should be it. Congrats on your upcoming surgery. We will be thinking about you. I am sure you will feel like this journey is finally ending after this step. Hugs.
Maja - I am so glad you enjoyed your trip to FL. The weather here has been really nice (well, except for the people getting flooded in north FL) I am going to St. Augustine Beach with some frineds in mid-May. Shari and Traci from this group are joining me. We should have a great time.
Have a great day all.
Lisa
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If anyone is wondering about the Herceptin and the se from it on your heart I have some news. I had to go to the cardiologist yesterday and everything was good but I did not know what all the numbers meant and what was good and bad. They did an ultrasound on my heart and the tech doing it told me between 60 and 70 is perfect. Mine was 62 when I started chemo and then after chemo it was 60. I was wondering what this meant but since the onc didn't seem worried until lately I took it as a good sign. I am having trouble breathing and my heart was racing because of that. Anyway the last scan was 59 so even though it is not perfect the tech said it was still good. I do have a valve that does not close as tight as it should but they said not to worry nt a big deal just will keep an eye on it. this may or may not have been from Herceptin. I am going to have a stress test on Monday but not on the treadmill since I am low on red blood cells. I will have the chemical one. Anyway I think it will be okay, everything else was. Now if I can just find out why my breathing is so bad. It feels like asthma. I had that when I was a child and my grandson has it so I know how it feels.
Maja/Carolyn, I have a side effects everytime I take Herceptin. I told onc before this time he was interested. It takes me a few days to get my strength back. this time was not as bad because my rheumatoligist gave me a cortisone shot and I think that may have helped the SE even though I still had a little just not as bad. I do have low red blood cells. Do they check your blood before your Herceptin? Mine only checks it every 6 weeks but maybe they need to check it more often now. I will be getting Procrit because I have had so much blood they don't want to give me more. I just hope it works out. I agree even if you have to have it once a week you need the Herceptin if you can.
Have a good day everyone and I hope the SE are few.
gramma23 (Carolyn)
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Gramma-
Couldn't your breathing problems be related to the low red counts? Mine have been low during chemo and they always tell me to let them know if I become out of breath. That has not happened. One other thing they told me to look for was darker stools. Not a pretty thought but it might be worth taking a peak!
Going into work for the first time in 2 weeks today, I feel like a hermit venturing out into society for the first time! So looking forward to seeing everyone there and feeling like a part of life again! That is, till my chemo on Monday!
My best for a fruitful, positive day.
xoEllen
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Gramma I get SE from the Herceptin. I am on the once a week plan for it and takes about 2 days to get back on my feet. I have trouble breathing if I walk up the stairs and I am really tired for those 2 days. They test my blood every week to see if they can do the treatment. I tell the nurses that's why I'm tired because they take all my blood
Tx number 3 is tomorrow I am so glad to be 1\2 way!! just not looking forward to the SE.
I teach school and our music teacher found out she has BC too. She is in the overwhelmed stage.
Denali- are you doing ok?
We are having a great day here is Idaho we should make it to 77 today!!
Karen
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Morning all: Shaved my head yesterday to get rid of duck fuzz. ( let the real growth Begin!) I am off to see my BS she is pregnant with triplets (yikees). I hope that my scans are ok. This is my first follow up. I am not to nervous just a tiny bit.
Karen: Are you getting Herceptin by itself?
Peace out chemosabie,
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Bold- I am not sure what I get for the 1st 15 mins. I know it's to calm the stomach and the next 30 hour is just the Herceptin. I was hoping that the Dr. would do the 90 mins every 3 weeks but he likes every week instead. It will be a long year.
triplets now that is exciting!! My husband has triplet aunts that are now in their 80"s. They used shoe boxes as their cribs for the first weeks and placed by the wood stove to keep them warm. It was amazing that they all lived and were healthy. They still keep things hopping when they come to visit; all of them have been married three times. The last husbands were about 15 years younger! Your friend is in for a fun time!
Karen
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Thanks Lisa you will be with full hair soon. By the way I wanted to add about me posting to be your own health advocate. Here is a perfect example. Yesterday I called and left a message but no response and today called again and spoke with a nurse to find out that I was right and they were wrong on ordering a clean out prep. It just didn't seem right that they would want to open up the bowels and not have it clean. I pressed it to find out they made a mistake and yes I am go have that yucky stuff. Not that I am thrilled to drink the nasty Colyte, but if I would have went in on Tuesday for the surgery they would have had to cancel it because that wasn't done. Also a reminder to all of you finishing up to take time to write down every thing you have went through and the dates. You will not remember it down the road and while it is still fresh in your mind write down dx, treatment, path reports etc. Tuck it away when they ask down the road the dates you had all this done.
Have a wonderful day campers and for those of you in the mist of the treatments be strong and know we care about you.
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Hi cupcake7: Surgery on Tuesday? I wish you a successful procedure and a speedy recovery. I'm sure the clean-out procedure will be no fun at all but I guess you gotta do what you gotta do.
I received my plantbuff stuff in the mail a few days ago. I think I lost one of my buffs to my 9 year old daughter who loves it. I see now why they're so popular. I wish I had one when I first lost my hair and my scalp was still tender. I really like wearing the pirate style.
I also decided that I was tired of being sick and tired and I started up liturgical dance again. I go on Monday nights and even though I'll miss a few Mondays because of treatment, the enjoyment I get from dance outweighs how crappy I feel a lot of the time.
Well, after 6+ months of being cold-free, the bug finally hit me. I've been in and out of bed for the past two days and have laryngitis. My onc has postponed my chemo (tx#9) to next Thursday so I can recuperate. I have scans on May 15th and I'm hoping after my scans that I can take a chemo break. We'll see.
Stay strong everyone.
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Well, I finished TX #5 today, so only one more to go. All went well and all of my counts are in the normal range. I was in and out of there in 4 hours--including blood work, so not too long of a day. My sister has been with me, so that has been fun. My neighbors fixed dinner for us, and it was delicious--everyone has been so kind. Hope my side effects will be few and far between, but I will be proactive with the anti nausea meds and on top of a yeast infection. Mary Ellen-hope your treatment went well today also.0
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Mason: I will be praying my best prayers for you so that your scans allow you a deserved break I hate that you got "THE BUG". I had it and it took 51/2 weeks to shake. (my ribs still hurt from all the coughing). I hope yours is not so nasty.
Question?????? I think that I might loose some of my nails and toe nail Damn it!!!!! How can you tell? Has anyone gone through this injustice. I have a few dark toe nails and white trama lines in my tender fingers. Will it ever end. Nails take about a year to grow out for pity sake. I live in CA all we wear are sandals. Any info would be appreciated.
Meeting with BS could not of been better. Just had a breast exam. She has open a new Breast Cancer Center called the PINK LOTUS. Its huge and has it all from Surgery to after chemo and radiation care. Its in Beverly Hills and is very elegant. Anyway she want to commission me for all the photography art work in the center. I had made a gift for her after my surgery of a bamboo framed pink lotus. Needless to say she loved it. I think she google me too. Nice job if I get it. She also said I would die of old age. I loved hearing that even if she doesn't really know.
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Welcome Alaina though I'm sorry you needed to join us. I read your post in IDC and it sounds like you are keeping a sense of humor in dealing with this (Abercrombie and Fitch). Since you are stage III, are they doing chemo before surgery? Cupcake on this thread was diagnosed at stage III too and when they did the surgery they didn't find any cancer left.
Usually there isn't a big difference from one chemo cycle to the next. There is a cummulative effect so as chemo goes along it tends to get harder but on the other hand you learn things about how your body is reacting which sometimes makes things easier. For me, the duration of the bad part of the chemo cycle got longer as I went through. I think that was because my blood counts were slower to recover.
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7 days and I am still not feeling great! Number 4 has been the absolute worst! I dont think I can keep going through this...I am going to talk to my onc tomorrow about why some people get 4 treatments and why cant I! I am mentally and physically drained! I commend all the women before and after me who go through this....HELL that is!
Not smiling these days
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Hello ladies,
I've been following this TCH site since February, I had my round #5 last monday, I'm out of the woods and feel great. One more round to go, and so far some of the side effects that I have are: dark finger nails (4 out of 10 nails), hair loss, a bit numbness of fingertips. I've read that claritin helps for the body aches, my biggest SE was bodyache. I've been taking claritin every day for 7 days after chemo day since round 3, i haven't experience any ache since. Thanks to the ladies before me for the suggestions. I'm ready for round 6 (5/4/09), and I also saw my PS today to schedule the exchange surgery, she scheduled me on 6/4/09 for the surgery. I'm SO ready to move on. But at the same time, I want to stick around to share my experience with other newcomers.
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Hi everyone, it's 2 and a half months since my last chemo Tx and I'm surprised how recovered I feel. Memories of the dark days when it seemed like an effort just to sit up are fading. I finish radiation next week and that's been pretty easy on me. I keep feeling my hair - it doesn't look like much yet, but there is a short coat of it all over my scalp.
Its great to see those who were just starting when I was finishing chemo coming to the end of their cycles.
Bold, I've got some little white lines going across my nails where the chemo growth ridges are but I'm keeping the nails trimmed short to avoid stress on them and so far they are hanging in there. I'm worried that I'm going to lose the nails on my pinky toes. There is a bunch of white on them like the nail may be separting from the nail bed. I think it has been a while since we have had someone on this thread who lost nails.
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Hi Bluedasher!
Yes, I'm doing chemo before surgery, mainly because cancer was found in one lymph node. The node was 3cm based on the ultrasound, so first they did a fine-needle-aspiration of the fluid in it to determine if it was cancerous. When it showed positive for cancer, they did a biopsy of the node to determine if it was the cancer in my breast causing the node to swell or cancer from another part of my body. The pathology showed the cancer that reached the node was a result of the IDC in my breast and was ER+ and HER2+ (PR-).
Right now, my surgery is planned for September. I'm comforted to hear that the SE's from one cycle to the next really don't change much.
Alaina
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Shari ((bighugs)) I asked my onc. the same question and he said he wasn't going to "lower his standard of care". So onward I go thru #5 even though I know a week from now I will be crying (and I am not kidding). I hope your onc. can get you some relief.
cil36- Welcome and congratulations on #5 being done and getting your surgery scheduled. I have mine scheduled already and I am looking forward to it. I am going to have to try the Clartin.
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Shari and Jaimieh, I understand your feelings. I also wondered about 4 vs 6 since I was Stage I. My onc said that there are only clinical trial results for 6 cycles so when she does TCH she does 6. Actually, when I went in for Tx 6 my platelets were low and creatine was high so she suggested stopping but by then I figured I might as well make sure I'd done the full course. My blood was retested and had improved enough that she let me have the last Tx.
Now that its all over and I've had time to recover, I'm glad I had 6 rather than having to look back and wonder what the effectiveness of 4 cycles is.
Cil, your post reminded me about the numbness in the fingertips. I'm surprised to say that mine is gone. They had stayed numb for long enough that I was worried that it wasn't ever going to go totoally away and then when it did I didn't notice.
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Welcome to the new campers! You have come to right place for help in getting through this!
Smile, I hope you are feeling better, it takes me about 10 days to rebound and day 6 and 7 are the hardest. I hope the Dr. has something else to try for the SE. Hang in there! Only 2 more to go!
Cupcake and Mason you will be in my thoughts and prayers next week for your procedures. I am a big believer in the power of prayer. It helps get through a lot of dark days that comes with the cancer. My mom lives with us and will be celebrating her 102 b-day, she walks 2 miles everyday and is still sharp as a tack. She says she has lived this long by her faith, the power of prayer and a glass of wine (or two) every day. So if all else fails try the wine.
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Shari, I felt the same way about #4. I asked the ladies here and the doc why I had to have 6. I don't remember his exact answer, something about what the studies show for my diagnoses. But the ladies here made the best point: After suffering thru 4, wouldn't you be really upset if this crap came back and you had not done the 6 the doc wanted?
Cupcake, I feel for you with the surgery prep. That is the most vile stuff imaginable, not to mention what is does to you. I am past due to see the colon surgeon because I know exactly what he will want to do and I just don't have the mental energy right now. I will deal with that after the herceptin is over. I will be thinking of you when you start drinking the "cocktail". Good luck and prayers your way.
Bold, sorry about the nails. From what I have read that is very uncommon. My nails are horribly brittle and slightly off color, but I have a difined growth line of healthy nail. If you only lose part of the toe nail, you get have acrylic applied until it grows out.
Mason, you are always in my prayers.
Karen - 102 Wow! See, I knew that wine was good for ya!
Welcome to the new campers. Sorry you are here, but you have found the right group of friends to get you thru.
Question for the graduated counselors: When you lose your brows and lashes after chemo, how long does it take for them to grow back? The brows I can deal with as I am pretty handy with the pencil, I cannot deal with the lashes. I think I would look a bit foolish in the barn and on the trail with false eyelashes
I am taking my horse to the beach today. The weather should be perfect with a high of about 82 and not a cloud in the sky.
Have a great day everyone.
Lisa
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Hi Everyone! I wanted to tell you that I went to the hospital and to work with no scarf or hat yesterday and felt very comfortable. I may have shocked a few but it was warm enough to do that so I did. I am so tired of wearing stuff ( other than my hair) on my head.
I did know I get breathless with low RBC but this is different. My cardio said it could be a side effect from radiation because he does not hear anything in my lungs. I guess I will just wait and see if this Procrit helps. I got my first shot yesterday and will get one every week for a few weeks. I was really tired last night but I am not sure if it was from that or such a long day I had. My onc thinks I get low rbc because of my arthritis. I am not losing any blood from any place so not sure why. My brother did the same thing. Must be something in the family. I wanted to start on B complex and other vit. but onc said it would not help. My bone marrow needs to make it and thus the Procrit is suppose to do that. I would think my bones would need some extra nutrients to help but I do eat good food. Hubby is on low cholesterol diet so we eat healthy stuff. I am losing weight he is not. Someone may be cheating when I am at work? I have a stress test Monday. A chemical one though because I am too weak to walk that treadmill. Just walking in the yard is tough on the breathing. We had to turn on the air yesterday and it helps the breathing.
Welcome to the newbies. Congrats to those who are getting close to finshing.
As for nails I know Shelby & Kristy Ann had problems with that. My finger nails had white lines across and when they would grow out to that line they would break there so I keep them clipped short. My job will break good nails as it is. A few of my toe nails got white and one got black but I picked at them and they did not fall off so finally they grew off and now are normal. I would say the acetone is not good if you do your nails. They warned us about that in my chemo class but I did not listen very good since I never do my nails anyway. Just kept them filed and a decent length. If you went to chemo school and got a book it should say something in it about that. I sent my book to my brother so I don't have that to quote anything from it.
Mason I am so sorry you caught a bug. Take good care of yourself and keep dancing even if it is in your mind.
Have a good day everyone if you can. It will all be behind you soon but I hope you never forget those coming after you. Give your wisdom to them.
gramma23
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"Now that its all over and I've had time to recover, I'm glad I had 6 rather than having to look back and wonder what the effectiveness of 4 cycles is. " Bluedasher
Okay this is the reason that I am going to drag my sorry ass (sorry for the coloful language) back into the infusion room 2 more times. I need to know that not only did my body go to the maximum but I did all the treatments that I had available at the time. I will say I can't but all I know that I need to do is look down at my babies and think how many more can you give me. My goal in life is to be an old lady.
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Hello Everyone... boy was I happy when I came across this site/blog. I just took my 6th cycle on April 9, 2009.. two weeks ago today. Tears come to my eyes reading some of what I just read.
Smile2006 - you'll make it. I can totally remember feeling just like you do. I recall sitting on my couch telling my husband I don't know if I can make 5 and 6. I did and so can you.
I have not stopped working, although I have worked very few 40hr weeks. I have managed 30hrs but the extra 10 are simply because I too have been sick, tired... in chemo hell.
I'm looking forward to next week when I know I normally start feeling strong and happy there won't be another treatment aside from Herceptin.
Currently here at work and I had to move to another office/room for the general floor is celebrating with food... many foods being cooked and the smell has driven me to hid in a closed office room. They don't understand.
I will continue to stay on this topic to share and help those still going through their cycles. My next step is surgery on May 6, 2009 and then Radiation after.
Happy to have found you all.
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Bluedasher - nice to hear from you...
As one who has gone through chemo 5x, the one thing I have to say is that I did the maximum treatment each time. The upside to that is I have NO regrets whatsoever about what I could have done. Also, I'm still here - alive and kickin'. If you can go the full distance, certainly do so! Chemo the first time was unbelievably hard because I didn't have the meds then for SEs that I have access to now - I was so housebound that I had a nurse helping me with things like eating and bathing, chemo was unbelievably hard but you do come through at the other end. I remember lying in bed on the phone with my best friend. She'd just had major surgery and I was chemo-bound. Neither of us could get out of bed. We both talked for 20 minutes about the fact that we had to "pee" but neither of us could get up to go on our own. Just thinking about it was "effort".
Over time, I regained all my strength, my hair and nails and had super QOL for quite some time. Even now, my QOL is pretty good except for the chemo SEs. The mets don't interfere with my living - just the chemo!
Have a great day, everyone!
I'm off now to remove my daughter's lunch dishes. On top of this nasty cold (which I'm now coming around from), she has CHICKEN POX! When does it end! I've had chicken pox and shingles before so I'm hoping I'm somewhat immune. Gotta hope!
Cheryl.
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Lorena, I'm glad you found this forum too. I'm fairly new myself (1st chemo last week), but you inspire me to keep on keepin on.
Cheryl, I hope you are immune too. :-)
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