Taxotere, Carboplatin and Herceptin
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magnola - Baker is about 45 miles east of Pensacola and 20 miles north of Ft Walton Beach/Destin. We actually live about 3 miles south from the Alabama line.0
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I get my probiotics and digestive enzymes from the health food store. Try to find one that has helpful staff. I got the highest concentration of probiotics - they are kept in a refrigerated case. I also got a broad spectrum of digestive enzymes.
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I'm an "old-timer"--was sick as a dog from treatment a year ago...had my first THC 6.5.08. I stopped being an active part of this board months ago, but an article in Psychology Today about cancer survivorship that I read this evening made me so angry that I wrote a letter to the editor and thought of you ladies, my heroes, and had to check in. Your strength, which retrospectively, has been my strength, inspires me. Don't let anyone lay a trip on you that your "journey" (I hate that word) with cancer has to be "transformational" and that you have to "become a better person". If it happens, that's great. But don't feel like it's a pressure or an imperative. There's a lot of sick, sophomoric, Oprah-holic psychobabble out there. My cry is that those of you who are suffering emotionally, clinically depressed, perhaps and being told that "this is the best thing that ever happened to you" are not being served. I know I'm rambling...but be careful of what you read. I always said that when I was actively part of this board, and I'll say it forever...because there is a lot of insensitive, irresponsible reporting and even social science research out there. I care about you ladies. All you have to do, as far as I'm concerned, is live and keep living!
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Shelbaroni, thanks for checking in on us. Love the avatar and all that hair!
Lisa
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shelbaroni,It is so good to hear from you! I do hang around here some to see how everyone is doing and I love all your hair. Mine is growing I guess but nowhere close to yours and I was only a month behind you. How has things been with you? I wonder from time to time. I do agree that survivors will not necessarily come through this with a great sense of happiness, strength or understanding. I have tried to be more understanding but you know I am just myself and when things get me down I am still the same person I was before and will always be I guess. I am thankful God has been with me. I know things could have gone worse and I try to remember to not sweat the small stuff but I do sometimes. Of course that was my motto before even as a younger person but it is easier said that done and I do not believe going through this hell will make anyone a saint where you will be grateful for the experience. I would have rather not! One thing I do feel is such compassion for anyone having to start this I just want to cry for them. It does change some things but does not make most a great person. I ramble too. I am glad I did not read what you read or I may have blown a fuse. I guess it is one person's opinion and you know what they say about opinions! Everyone has one. So you must be finished with everything by now? I have one more herceptin next month. I will be so glad but now have other problems health wise I guess I will have to live with. Live is the Key. I will Live. Shel, keep in touch from time to time.
Carolyn
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Shellbaroni- Thank you for that post. I must read the article that has riled you up as I am most certainly dealing with the issues of moving on COMFORTABLY after chemo. Still nowhere near done treatment with upcoming recon surgeries, herceptin for 9 months and AL's for 5 years. But it is for me this after chemo and resuming "normal" life that I find challanging. I'm still in the process of mourning my "pre cancer" personna; an inherently content and happy person. I've found it difficult to "move on" with no boobs, no hair and the prospect of taking drugs that will make me feel 80 instead of 53. This for me is the most challanging part of the entire cancer business thusfar. Yes, chemo was physically and mentally debilitating but I was in a place where I felt as EXPECTED and my mission was to just get through the day. Now I truly believe the reality of the past 8 months have begun to take it's place within and the challange is to figure out how to incorporate that into what I knew to be "self." I THINK I've begun the process of ACCEPTING that after quite a few personal emotional breakdowns. The biggest gift I have given myself is to "live and let live" as they say and be patient with myself while understanding this will not happen overnight.
I really do aspire to make this life event not a positive per se (NO friggin way!!) but a process that has enabled personal growth and enlightenment. Not Oprah-like changing the world, but surely being diagnosed with cancer does cause one to really think about life as never before. Your post made me realize that I truly have to work to make that happen. More importantly, it won't be happening anytime soon as this is a long and arduous process. My biggest fear is a lifetime of bitterness and fear. You know what they say about resentment...it's "like you've peed in your pants and everyone else can see it while you are the only one who feels it!." THAT aspect of the "old me" is what I've been upset about not feeling inside anymore. All I want is to get that back and I don't have to save the world, or every bc sister to do it. Just have to be PATIENT. I sure wouldn't object thought if I could come to a place where I feel it helped me grow as a person.
Sorry for the ramble. As you can see, I've been grappling with my emotions since ending chemo and I think that your post has helped me see what I need to do. I thank you and everyone else for letting me use this as my therapeutic sounding board.
Wishing everyone a peaceful Sunday.
xoEllen
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Hi Shelbaroni! I remember reading your posts as I was just starting chemo. I'm curious which article you read that infuriated you.
I get tired of those that insist that this experience must have changed everyone in a certain way. I get tired of hearing that we will all have a "new normal". I would think I'd had a pretty sad life if, at 56, breast cancer was the best thing that had happened to me. I feel it has been a bump in the road - maybe a series of big bumps, but not something that has fundamentally changed me. I'm me, still me and don't feel that it changed me. Cancer treatment was just something to get through while keeping up with as much of my work and family life as possible.
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HEY SHELBARONI!!!!! I remember the day that you signed off the board. I was sad because we lost a comedian and fiery spirit. But I was glad as it was time to move on.....Cancer sure as hell changes thing. And it sucks!!! Putting up with side effects. Spiritually I was on a path of enlightenment and I still am. I always strive to be the best I could be and still am. I think that people that say that it is the best thing that happen to them need to. It is their way of framing to help them deal. Maybe they fear meeting their maker and are trying to be as good as possible to make-up for their sins. I don't know its so individual. All I know is that we are mostly the fortunate ones that found their cancer early enough and had hard core treatment to ensure us a long and wonderful lives!!!!!
I hope that everyone finds joy this weekend and everyday!!!
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Jaimieh, I haven't had any side effects that I can be sure are due to Clodronate. Maybe a very mild tendency to diahrrea. I'm currently taking a break of up to 4 weeks from it because my creatinine was staying at the elevated level that it was at at the end of chemo. I'm hoping that stopping the Clodronate for a bit will let it go back down since Clodronate can effect the kidneys. I'm also waiting for my doctor to talk to me about the results of a kidney ultrasound to decide whether it is safe for me to continue in the trial.
I did enough vomiting during chemo - I'm sure glad I haven't had that side effect from the Clodronate. Nausea is the only thing listed in the "likely" side effects of Clodronate and vomiting is in the "less likely" list.
I am enjoying the break from swallowing the horse pills. At least they have a sort of tapered shape that makes them go down a bit easier than the calcium plus vitamin D pills that we are suppose to take on this trial. I wish I could find some of them with a better shape but the bottles don't usually let you see the shape before you buy. I'm not a great pill swallower anyway - I have a pretty lightly triggered gag reflex that I have to fight. Maybe I'll learn if I take these for 3 years.
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I've been wading through the 200 booklets I was given on cancer and read that the average woman gains 7 lbs during chemo?? Is this temporary water or drug side effect? That just seems wrong. My double mastectomy already has me lookin like Pooh bear with the little tummy I didn't have to see when I had boobs. I was thinking well at least I'll lose weight so this information threw me.
By the way, I visited Relay for Life yesterday and I must say I was treated like a queen. Got my survivor tshirt and a great dinner, then walked the walk, the first lap was very emotional for me. It reminded me of a homecoming queen ceremony with everyone (strangers) cheering as we walked. Im in Kauai so it was the most beautiful setting, with live music and the mountains in the background, really a wonderful experience. When my daughter and sister joined me (with her Yorkies in the dog stroller) it was fun.
Anyway, I'm hoping the wt gain is a lie, just adds insult to injury and I'm taking of 30 lbs one way or another! Has any out there experienced this?
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Kauaicharm - it varies. For the first 4 cycles, my weight stayed almost constant - my weight at the pre-chemo visit varied by no more than a pound. Then on the last 2, I lost about 15 pounds - but it isn't a weight loss method that I would wish on anyone. I wouldn't be nauseous, but if I tried to eat anything in the evening during the last two cycles, it would come right back up - kind of wierd.
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Ladies - I read about a product called a "CHILLOW" - it is like a water filled pillow that you put inside your pillowcase with your pillow and it keeps your head cool. It is supposed to help those of us with hot flashes - which definitely includes ME. Question - have any of you tried it? Any feedback before I buy one? If not, I will buy it and be the guinea pig and let you all know if it helps.
All I know is - if it helps AT ALL with sleeping through the hot flashes, that will be a HUGE blessing to me.
Amy
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Amy! I will google that product right now! Effexor has made life much easier, but I still have some nights that are really bad.
kauaicharm - Like Blkue said, it is very individual. I lost weight during tx and then gained 15 pounds in the 20 weeks since tx ended. I am still on herceptin, so I don;t know if that matters. But I can honestly say that I am extremely more sedentary after tx than I was before tx. So I am sure that has contributed to the weight gain.
Lisa
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bluedasher~ I hope that your 4 week break is what your body needs. I haven't been sick since day one so I think it may have been a fluke. I feel like an old lady these days with all the meds and vitamins that I am taking multiple times a day. The calcium pills are horrible and I can't stand chewable calcium they have never tasted decent.
Kauaicharm~ I am also one who lost weight on this treatment but since it has stopped I have gained 10lbs which I needed to do. I agree that it is all individual experience.
I gotta go tomorrow for H only, oncologist appt. which I have to show him a lump that the PS told me was fine but I still want him to check it out, a kidney doctor (nephrologist) appt., and a Kidney US. I am thrilled with my busy schedule because it will keep me from having to make 4 different trips up to the hospital (1 hour each way). It seems like little things make me happy these days
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Jaimieh, why are you having to get a kidney ultrasound and see a nephrologist? I hope the lump is okay. It could be scar tissue if it is around where they took stuff out.
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I am hoping you are right
about the scar tissue. I just had my exchange last week and the PS said she looked around in there and I do have some scar tissue. Which I trust her since all she does is reconstruction for BC patients. I am seeing a kidney doctor because during a bone scan they found out that an artery runs acrossed my ureter causing fluid to build up near my kidney. So they have to make sure my kidney still looks good and that there isn't more fluid. I will have to eventually fix the ureter problem and they will go in and reroute the ureter which isn't going to be pleasant. Its a lap. surgery but with a 2 day hospital stay which freaks me out.
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Dear Ladies,
Just went for the RT planning. It was worse than I thought, and I am more scared of it than chemotherapy.
Chemotherapy was doable for me. even the hair loss I could deal with.
But I cannot cope with the RT technician making two huge tattoo marks on my chest just below my neck(he promised it woudl be pinprick), warnings about permanent brown marks on future booster sites, etc,
Mommy Cupcake, I need your support and feel like crying. My friend said I could get rid of the tattoo marks by laser treatment later. But won't that cause further damage to the skin?
I hate the technician - I feel he doesn't care how cancer patients feel. I don't know how I'm gonna cope with the six weeks of RT starting 13/7. We have decided to cancel our Lonodn trip in favour of doing the RT ASAP as it has been already 140days since my lumpectomy.
Sorry for the rantings, but I felt so in control during chemo but not now.......especially after the huge tattoo marks left on my chest. It's like things are getting out of control.
Ipohgirl
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Ipohgirl, I am not Mommy Cupcake but I did have the radiation and like you I was so scared of it. I also did not want to go every day for just a few minutes. It was 30 min drive one way but I did and got through it. 7 weeks and 1 day with my brother dying at the beginning and his Memorial I went to so I was off for a few days but then right back to it after my trip. My tattoos are not big just bluish dots but I can see them. I do think they may have faded a little. I also felt like the technician did not care how I felt. She was rude and abrupt with me when I had the setup done and I told on her. I figured it would make things worse for me but after that she was very sweet to me. I hated them taking my picture with my scarf off. It is bad enough to have your picture made with no clothes on the top. I have never felt so out of control in my life. They said I had to have my picture made so they could recognize me when they did the treatments. Okay then just take one of my face, not my naked boobs that were all scarred and my head with no hair. I almost told them I was not going to do this and I thought it through and decided I would not let my pride keep me from doing this to save my life so I did it. I did not have an easy time of rad. but I didn't have an easy time of chemo either so I am just that way I guess. Cupcake did okay she said and thought it was a lot easier than chemo. I know several that was not effected like I was. I did not like any of the radiation doctors and they were not sympathetic either. It was a job and that was the way they approached it. the girls at the reception desk were kinder but I guess if the techs and doc have to see people going through this they have to become distant from it. I really don't think I could do this job and keep my sanity. Right now when I hear of someone else getting cancer it really gets me down. I feel worse for them than I did for myself. But if this helps you not have cancer then you can do this too. I am not a tattoo person but if you want to have it removed later then I think it would be okay but I understand it is expensive and painful. Maybe if you like tattoos you can have a pretty one put there later. What does your husband think about the tattoo? Does he think it is big or ugly? Mine can not even see where they are unless I point it them out, he thinks it looks like a mole or something. I hate them of course but I can live with them. I will wear it as badge of courage where I got through this. Just pray about it and maybe you can deal with it later. You can do this too just like you got through chemo. I am not saying you will like it but you can do it. It will give you a better chance of this not coming back. I kept telling myself this. If TCH gave me 80% chance of survival and rad gave me 70% chance of it not coming back then I have 150% chance of this cancer being gone and staying away. Do you like my math? I am sorry you have to cancel your trip. Hopefully you can take a really nice one once you have finished all this. I will keep you in my prayers. You can do this!
gramma
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Jaimieh, I have a lump too but they say it is scar tissue and it is not in the scar. I do worry about it but I have had a monogram and before that I had an MRI and nothing showed up for that so I guess I have to trust them. I wish it was gone and I guess if they took it out then it would just cause another scar. I do scar easy so it does make sense. I am sorry about the next surgery you have to have but hopefully your kidneys will be okay and I am sure the reason for the hospital stay is just to keep an eye on you for a little bit. Just a precaution I am sure. Good luck on this.I pray you will have an easy time and good results.
gramma
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Shelbaroni: Possibility that the writer had never had cancer to be so incentive. It has been not far enough out for me not to remember how bad my treatments made me feel to say "it was the best thing that ever happened to me" , but it has taught me to appreciate each day I have now where before I took each day for granted. I feel blest to have each day of feeling good after this past year of not. I do things now instead of waiting for tomorrow or a year from now. That is how it has changed me. I have used the word journey, but not all journey's are smooth roads. I took a lot of back roads with ruts that would bury a cow in them. I often have thought of you Shel, and miss your wit that made my experience in here lighter. You made me laugh on days I felt no sunshine was in the room. I miss you Shel and hope you are living in the sunshine and enjoying each of your cancer free days.
I put on my Jack Russell as my picture today. I got him right before my dx and being a JR they have energy that surpasses any dog alive, plus him being a puppy. However he stayed by my side all through chemo and would lay quietly beside me with one paw on my leg to support me. What a blessing he was to me during those dark days. His name is Jacky...so original hunh? I know Lisa had her beautiful horses but do any of you have a special companion with you now?
If any of you new campers haven't seen the song that Shelbaroni wrote for us you should go back and find it. She really was our court jester in Camp Chemo and she lifted each of us with humor that only she could muster up. You wouldn't think she was suffering like we was during her time, but she was. Best of each of you just beginning and remember to ask any questions and someone will have the answer for you. Information is power in this. The unknown is the worst. For those just finishing congratulations to each of you and ones in the dark clutches of the tunnel my prayers are with you. Look ahead and see if you can see the light, your almost to the end.
Iphogirl: I was posting right when you were so going back in to respond to you. Sweetie don't be scared of RT. It is much much much much easier than chemo. You made it through the worst. The tensy little dot is so small they actually had to put a sharpie mark on it each time I came in cause they couldn't see it to line up the lasers. I won't lie cause the little prick does hurt a moment. It is a needle, but after that it is over and the rest is a breeze. Worst part is that prick. I did not get sick. A little tired some days, but I just planned for a rest in the afternoon. Each day is a pain going in for 5 minutes of radiation that disrupts some, but outside of that you will breeze through it. It was iffy if I needed it cause I had a Mastectomy, but it is sort of a mop up and get any of those little critters that might have escaped the chemo and lurking around. You go ahead and get it and I will send some angels to be beside you. Trust me on this it is very very simple. You know Mommy Cupcake wouldn't lie to you on this.
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IPOH girl - I am so sorry the RT has upset you so. When I was at the Look Good, Feel Better class, there was a lady there who was in the middle of rads. I asked about the tattoos and she pulled up her shirt to show me. They were TEENY TINY LITTLE DOTS, much smaller than freckles. I mean REALLY TINY - barely even noticeable (especially as we get older and lose our close-up vision). I took great comfort in that because I don't want permanent reminders tattooed on me either. I wonder if yours will really be so big, or if they HAVE TO be. If you are this upset and uncomfortable, PLEASE find someone to advocate for you - either someone from the local breast cancer coalition, or a patient advocate from the cancer center, or SOMEBODY. Or perhaps ask the radiation office manager to meet with another technician. I hate the thought of you going into this being this upset and unsettled. I also read somewhere that if you really dont' want tattoos, they can use permanent marker but they don't like to, because it comes off and they have to re-do, and it takes more time. But if it is that important to you, please research fully ahead of time. It was an option I was considering until I saw how tiny the dots were on that lady. If I find out differently, I will be investigating that as well. (As a side note, I don't see why they can't use henna or something that is not so permanent.)
I have been a little nervous about rads, too, and one thing that helped was going to the "Starting Rads June 2009" board and reading through the messages. Most of the women are over 1/2way through now and most are doing very very well. Almost ALL of them say it is a cakewalk compared to chemo. Perhaps that might help you get a better sense of it and gain some peace and confidence as well.
I am not starting rads until August and I hope by then, YOU will be able to reassure ME how easy it went.
Wishing you peace of heart
Amy
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Cupcake: my Maltipoo, Dixie, was and is always by my side. As I'm typing this, she is curled up in a ball at my feet. My Husband called her my chemo buddy. When I was in the bed after chemo, she was right there with me. I believe she knew somthing was different, and stayed with me. If your Jack Russell puppy did the same thing, I know that must be true! Jack Russell's never stay still for long, right??
IPOH Girl: I've never heard you sound so fearful. I hope that you find the comfort here to make it through radiation!
Maggie
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Maggie: Hey you should put a picture of your little Dixie on. Just go to HOME on top of this and you will see a place where you can add a photo and it shows every time you post. If you have any picture on your computer you can click on photo and it will bring up your photos to choose from. Yes for sure JR are so full of energy they make you dizzy just watching them, but while I was sick he layed so still beside me like your Dixie. They know when you are sick and want to comfort you, but on my good days...Oh my gosh he is rambunctious. My husband called him my Chemo buddy too.
Ipohgirl: Good advise coming in for you on the RT. I was so fortunate to get a good team and sounds like yours is a stink pot. You will have an onc radiologist that will monitor you all through your tx so ask him or her how big they are. I really think they are joshing you on the size. Maggie is right they are sooooo tiny you can barely see them. As I said mine were so tiny they had to look carefully, almost with a magnifying glass, then mark the spot every time cause when they went into line up the machine it was hard for them to see it. true story....Remember the scariest part of all this cancer journey (there I go again..sorry Shel) is the unknown. Remember how scared you were at first tx and now look at you...an ol pro. RT is the same thing. Once you see how easy it is you can come back in and tell others like Amy how really simple it is.
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Gramma~ Thank you. It is part of my implant....whoooo....now I will take a deep breath for the moment.
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Amy.. I want a Chillow !!! I take a frozen water bottle to bed with me every night. I put it inside a soft sock, and if I get hot or if I get a headache I can lay it across the side of my neck,(I am a side sleeper), and it helps me cool off with out being too cold directly on my skin. It stays cold most of the night, the sock insulates it and makes it melt slower.. I use it a lot, but have often wanted something like a cool pillow.. I know I have seen one in the Sky Mall catalog that you get on airplanes, but I never ordered one.
My buddy is my black Labrador, " PIRATE" . He does not sleep next to me, but he is there for me all day and follows me around the house and keeps me company. I was walking him faithfully since New Years to try to keep strength up through this ordeal, but now the last month or so I am so tired and its summer, and hot, I have to force myself to take him out, so its not as often, but I try...and go out as its getting dark so its not too hot.
I have heard the average weight gain is 30 lbs, that is what my doctor said and also my aunt who went through this gained 30. I lost 10 pounds with the mastectomy because my boobs were DDD, but am now gaining it back. Darn it, I was already very over weight.
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Ipohgirl....I soon will have to do rads after chemo is done and I was so worried about getting them too. Then I read and read on all of the rad and chemo boards and the ladies here have made me feel more comfortable about doing them. I also got to thinking about how much I do not want a recurrence and I am willing to do everything possible for that not to happen. I hope I will get a good rads team, I will just have to wait and see.
Jamie...Good news for you! Are you sore at all since your exchange and do you like how they look now?
Besides my husband, lol, my buddies are my 2 cats Sable and Cassie. They love that I have been home more since my surgery and chemo.
I have maintained my weight throughout chemo. I usually lose about 5 lbs the first week, then gain it all back the next 2 weeks.
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Hey ladies... gotta write fast...looks like a good storm heading my way. I start my first of 4 taxtotere tomorrow. A bit fearful...probably of the unknown. I took the pills they gave me to take the next three days...Dexamethasone. I will be taking the Zantac and Claritan tonight like some of you have suggested. I'm gonna do rads too, when chemo is finished...have been reading with interest.
The Chillo pillow sounds wonderful...I think I'll go google that.
Hope everyone has a blessed day and as few SE's as possible.... janet
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Be sure to tell the onc nurse EVERYTHING you have taken...very very important. Arnie the pills they gave you are steroids and watch the third day after you stop taking them cause that is usually when the crash happens. The first tx you probably won't feel anything. Takes a bit for the chemo to build in your system. The onc nurses will watch you carefully for any reaction and most likely do the dose slow to make sure your taking it ok. You will be fine. It usually takes longer the first treatment so take something to fill your time. Pirate, Sable and Cassie...pretty cool names. Husbands can be a great chemo buddy too.
Having bone pain again with Arimidex so stopped once again and when I see my onc on Thursday will see to change to Femara or something. This is the meds you take after chemo for five years. S.E's are different for everyone. I stopped Arimidex once before when I was doing radiation and began again afterwords and the bone pain came back so no way to live in constant Arthritis like pain. Outside of that doing well. Praying for each of you...
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Thanks for the input cupcake... it's really appreciated. I will be sure to tell them that I took claritan, zantac and alieve... I don't wanna... but none of do, do we? I'm so grateful for all of you...
I know he said that I'll be on something for 5 years after rads...not sure what yet. Boy, cupcake I will be praying for your pain also...
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Hi to all TCH campers! I'm another "graduate" - ended Herceptin April 22 and haven't been posting here much lately. But when I saw Cupcake, Gramma, and Shelby - I had to say hi!
I love Shelby's post - uh yeah, the last 18 months have NOT been the "best experience of my life." Now, one kid got married, one graduated from ASU (I got to see Obama speak at her commencement) and another begins hs this year. I am currently taking a weight training class to try to get some strength back after a year of surgeries and chemo. Certainly not everything has been bad, but having cancer??? No, I agree with Shelby - all I have to do is live! I certainly reject any pressure to turn my "journey" (also hate that term - my daughters snort whenever anybody uses it) into something that transforms me into a "better person."
Cupcake - sorry to hear about the Arimidex pain. Right now I am on no medication (ER/PR-) and don't see the doctor until July 31 (the three-month plan!)
ALL my best wishes to everybody here, out of treatment or currently going through it. This past week I hiked, kayaked, and weight trained. You'll be through with this sooner than you can imagine and living the "new normal", whatever that means for you. Some days I shove the real boob and the silicone sister into the bra and don't even think about it!
Love, Sue
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