Taxotere, Carboplatin and Herceptin
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Sue you look fantastic!!!!!!! And I assume that is your older daughter and she is beautiful. Congrats on finishing the herceptin. I can't wait until that day. Thanks for checking in.
I have 5 more herceptins to go.... I don't think I will really feel I am "done" with all of this until I no linger hang out at the oncs office every three weeks. I agree with everyone responce to Shelby. I don't consider this a journey. A journey is something I would have chosen. I don't feel the need to undergo any big enlightenment. I had cancer, I had it treated, it won't come back, time to move on. However, I will say that my tolerance for crap and sweating the small stuff is non-existence. I know what is important now and the most important thing is (like Shelby said) to live.
Since everyone was posting their pups, I decided to join in too. In my avatar is Bear, my 11 y/o shi tzu. I also have a 7 y/o golden retriever, Jake. While I had my horse to get me thru, I also had little Bear. He never left my side. We layed in bed, on the couch. We snoozed, we watched comedy DVD's..... He would not get out of bed until I did and was the happiest sharing my pillow. My golden turned into a watch dog. Golden Retreivers are not known for being ferocious, but Jake became very protective of me; everyone who came in the house got a warning. They knew that momma was sick and they made sure they took care of me.
Lisa
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Jamie - GREAT news! Celebrate with wine or chocolate!
Arnie - good luck tomorrow. I remember my first day of chemo, I was soooo scared. But I walked in the chemo room and one of the women told me I was joining the 'cool' group. Somehow that changed my mood and I was good after that. I kind of looked forward to chemo days in fact, because we all laughed and chatted through our IVs. It was always a fun day. The achiness wasn't fun a couple days later, but I made it.
Cupcake - that scares me about Arimidex. I already have a bit of arthritis. I HAVE to begin exercising. I lost 26 pounds and want to keep it off. Sounds like Arimidex is going to hinder me exercising. ugh.
Here's my chemo buddy. It's my Lexi who is a 2-yr old German Shepherd. She has lots of energy, but she always laid by my side during chemo chrashes.
2nd photo is both of my Shepherds. The lighter one is 8 yr old Sierra. Photo was taken at my DD and SIL's mountain house last wkend.
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Dear CCBabay, Magnolia, AmylsStrong, Granma23, Cupcake and all others who have empathised with me,
Thanks for all the replies to help encourage and comfort me. I really do feel out of control.
But I managed a good night's sleep.
Before the planning session started, I did ask specifically whether I could skip the tattoo and do something temporary. They said not possible. So, I went ahead and agreed and concentrated on how the RT would improve my prognosis.
They did a total of six tattoos. A male technican (he sounded like the boss) did three in a straight line down the middle of my chest/cleavage. The first (and most visble) one hurt the most, about 2 inches from my neck, the second was about six inches down and the third about 4 inches lower. The female technician did three on the sides of my right breast next to the surgery scars. They were painless and pin-prick in size (as described by Cupcake and others) and do not bother me at all.
But the first one that the male tech did measures 0.2cm!!! The second one was 0.15cm but less dark while the third was also smaller and lighter in colour .When I I asked him about the discrepancy in size after I had changed, he quickly took a cotton swab and rubbed off the red ink markings around it, saying it was a difference in MY SKIN pigmentation that caused it. Bull****, but I was too upset to argue with him. Incidentally, I have very fair, good skin - porcelain like - and it's even finer and softer now after the Herceptin.
How I wished the female tech had done all six.
I have not complained much about my treatments so far except for the first TCH(plus zometa) where my bones ached like never before for 48hours. Chemo is doable.
Granma 23, you really described the helplessness, indignity, anger and sadness I felt during the 40 minute pre-planning session.
For me, that is the lowest point of my treatments so far. It was like a scene out of a concentration camp in Krakow or something. They did allow me to put my buff on when they took my pic but no buff on when I was lying naked on the machine. And, I heard them laughing as I was going out the door to change. Strangely, I did not cry but I was breaking up inside.
I think I will take this up and report the matter to the onco doctor, who is really nice. The nurses and technicians upstairs where they do the RT seemed pretty OK too.
My darling husband said I could always laser it off later, but that's not the point. We could afford it but how dare the technican treat me (and others) carelessly like a POW in WW2! He acted like an evil, brutal Nazi doctor and couldn't care two hoots what I was going thru or the consequences of what he did...whatever, he had no right to treat anyone like that.
Also, ladies, my radio/onco said the booster jabs(6)will leave a permanent dark brown mark. How bad is it? I thought the radiation marks are like sunburn and will slowly peel off. He also said no showers in that area, just some sponging. I am confused.
I apologise again for these rantings but I already fear RT and the planning session was a terrible start.
I will need to go to a support group for the six weeks, I guess before I go crazy. I really miss the poppies and cherries in our garden in London this summer.................plus all the sales. We are now trying to book a short hol around Asia to appease the children.
Hugs,
Ipohgirl.
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Ipohgirl, I am so sorry. I cannot offer any advice or experience as I will not have rads. But I can off support. Just remember the goal and stick to it. I am sure the fine ladies on this board that have been thru rads will continue to help you along.
Lisa
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Ipogirl. I do not have any permanent brown mark in the booster area. My radiated brest is slightly pinker than the unradiated one but it has only been 2 months. I expect that will go away eventually and anyway it isn't very noticeable. I only see it when I compare the two sides carefully. The nipple on the radiated side is slightly larger than the other one and I don't think it started out that way. The area near my SNB scar where I burned a little is browner than my usual skin tone - about like it might get if it was tanned. I don't know if it will stay that way.
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Ipohgirl,My radiated breast was very tan but now it is beginning to fade but it feels like it might want to peel. I finished March 4,2009. I am not happy with the way it is hard and swollen but they told me it would go away and was until I got the mammogram. It is a cup size bigger than the non-surgery breast but they say it will go away. I hope so because it is sore.and very firm compared to the other. I do hope they even out soon. I have an autoimmune disease as it is and my body aches all the time so I am used to pain. this is different and I hate it.I did not have as many tattoos as you did but the girl stuck me right in a vein and it burned real bad and squirted blood for a while. She was surprised and I thought "Could you not see the vein?" It is very noticeable(the vien) but now the tattoo is not so bad but more so than the others,sitting right on that vein. They did mark all over my breast with a marker but it washed off after a couple of showers. It was easier taking the treatments than the set up was. they always wanted me to hold my arms up and hold onto a thing so my arms would not fall down but I decided I would not do that since it made the arthritis in my shoulders hurt and I just laid with my arms up and laying above my head so I would not move. Yes it did feel like a I was a prisoner with them taking my picture naked and you are right in how you feel. If you are not comfortable with the guy doing this then ask for someone else. You might feel better after you start the treatments though. See if that goes better because after I told on this girl I got treated better. With more dignity than before. I think they see it as a job they do and not us as people especially if they have not gone through it. by all means use the cream and soap they suggest and use the cream often since you have fair skin. I had some nasty burns and they had me put other stuff on it. Shower before you go to have treatment and Do Not put any cream on before treatment. I learned the hard way. they may have different stuff for you to use and just do what they suggest. Ask if they don't tell you. It was not a walk in the park for me but you may be different. It is like chemo,no two people are alike. I am glad I did it to lessen my chances of cancer coming back. My booster area is the scar and it is pinker than the rest so don't worry about the tan area. it will fade. Just be glad you will live. there are worse things than skin color change. I have so many scars from other surgeries I will never be the same but they were needed and after all time does change our appearance anyway. I am sure you will always be a beautiful woman even if some things are changed. I am sure in your loved ones eyes nothing has changed.They love you no matter what. You rant when you need to!
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Hi Girls,
Just had my 1st treatment yesterday, 5 more to go and then continue with Herceptin...a long day but no complications! Now I feel as if I am just waiting for the SE and don't know when they will start or what I will experience. The whole going back to work thing is the hardest for me since I am alone supporting my family and have a very physical and are exposed to more germs than maybe others. Wish I could just be going through this with not the job/money aspect to worry about. Yes, and I also keep being told how much this will change me and how you will have a whole new look on life. Makes me feel scared that what if I don't walk away from this with a life changing effect but no that I had to travel this path and got through it becoming stronger in the end!
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IPOHGirl: I am heartbroken over your experience. Now I am also more scared of RT myself. A woman in my local support group just finished and said everyone was nice and kind but I am going to ask her more questions next week for sure! I hope you DO speak to your oncologist about it. This whole process has some really tough moments and being treated without sensitivity should NOT add to them!
Blessed by: Congratulations on getting your first tx done.Count them on down!! Since you have a lot of exposure to people and germs, perhaps you can go to a health food store and get some immune-building supplements to help bolster your system. I take something called Host Defense and take whey powder as well to help my bone marrow recover and rebuild the white blood cells. I'm sure the people there could suggest something. Also, don't worry about how you come out of this, just focus on getting through! And you will. Any changes or growth you experience is just extra. The key thing (I think) is to beat the cancer and live a long, healthy, wonderful life with your loved ones. That is the payoff for what we are going through now.
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Blessed, this doesn't have to be a transformative experience. The goal is to get through treatment. Please don't let anyone make you feel pressured to have a life changing effect. I for one don't feel that it has changed my life view - I'm fine with that as I was happy with where I was and am.
You might ask your oncologist about getting Neupogen or Neulasta to keep your white cell count up.
The side effects usually hit most of us on day 3 or 4. I usually felt fine for the first couple of days after treatment and then would get really tired on day 3 or 4.
We are always here for your questions or support when you need to vent.
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Christy~ I wasn't sore until I decided that I felt good enough to pull weeds and since then I am in pain. I am hoping that it heals soon and stops hurting. I love how soft they are compared to the expanders. The size seems pretty good but they have not fluffed and dropped so I am still waiting.
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Blessed, I will start TCH in 2 weeks. My job is on hold, I'm collecting small disability checks and while I'd like to go back to work I'm going to put myself first and see how I feel. I work in sales so I have to be careful not to pick up any bugs that visit the store. I'll probably run the first time someone coughs, maybe I'll wear a particle mask!
I've never not worked and this feels weird to me. Let me know if you even get side effects, you may not. A friend of mine with Hodgkins is now taking 1 pill a day, the cancer is there but shrinking and he golfs EveryDay ( and does a nice happy hour too) Hope we all can just take a pill someday. It's coming.
Take care.
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Ipohgirl I am so sorry about your horrible experience I am 2 weeks out from rads my boob is healing still red but not peeling and hurting anymore, My rads techs and nurses were wonderful they treated me with great respect!!! I have 3 tiny tats you can hardly see , I do not know why you have to take off your buff I wore my bandanas everytime your head is no where near the radiation field that makes no sense. You need to voice your concerns there is no reason for you to be treated that way. blessedby4 I worked my full time job all during TCH went home early mid week of TX 5 & 6. I was fortunate to never have a problem with WBC or RBC, I even had my port surgery the lowest point of my first chemo cycle ,so I am praying for this for you,I washed my hands constantly and when I couldnt get to a sink I used hand sanitizer compulsively.Everyone is different I was very lucky God had a strong hand in taking care of me, I pray always for his strength and love for everyone to get through their treatments. 0 -
Ladies How often on Herceptin is everyone getting a MUGA or Echo?? I had one when I started then one at the end of chemo my oncs Nurse practitioner I thought told me I won't have another till Im done that doesn't seem like it should be right that means I would go from May to Jan next year with no checking my heart That is very worriesome to me so before I say something to my onc I was checking to see what everyone here says. Also Is a year of Herceptin 17 or 18 treatments ? I had my 3rd Herceptin only today, took 30 minutes , I have had 9 total so I believe 8 more??? 0
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Paula, my onc told me every three months for the MUGA.
Becky
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Paula...I am scheduled to have 17 total Herceptin treatments0
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Paula, I thought that MUGAs (or echocardiograms which also measure heart function) are suppose to be every 3 months while on Herceptin. My oncologist actually scheduled me for one at before chemo, one mid-way through chemo and one at the end of chemo so those were more like every two months. Since chemo, they have been every three months.
I thought that the year of Herceptin for those of us getting it every 3 weeks is usually 17 treatments which is 51 weeks rather than 52 but that should be close enough especially since it seems that even trials of 9 and 10 weeks showed good results. However, at my last visit, my onc said I would be finishing Herceptin in October. I questioned that because if I had 17 treatments, the last one would be in late September, but she says she doesn't count - she goes by the calendar. So if I understood her correctly, it sounds like I'll be getting 18. I'm feeling a bit grumpy about that and may tell her "no thanks" when the time comes for number 18. On the one hand, I'm not having any side effects and my MUGA score has had no significant change but I was kind of attached to the idea of finishing by Yom Kippur and one extra treatment isn't likely to benefit me either.
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I have been on TCH last year. I just have to say to those that have the metallic metal taste in your mouth......it happened to me, but it was NOT the Chemo...it was the sleeping pill they prescribed me...Lunesta, I believe! So, pay attention if you are on a sleeping pill.It can be a side effect
I stopped mine and my taste buds were fine for 6 treatments! Just a note......
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Blue - I would be grumpy about that too. I need to question my doc about that too. In my mind, my last herceptin should be the first week of October which would be 12 months. I was told a "year" of herceptin, I was never told the specific number of tx's.
Lisa
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I am having an extra one. He told me I would go passed a year and I never counted the # of Herceptin tx but I thought it would be over in June but now I have to have 1 in July. I do have side effects but last time they dripped it for an hour and I did better. I want to say no more but you know my onc has taken very good care of me so I will go ahead and do this. I was so ready to be completely finished with Herceptin. I get a weird taste in my mouth after the tx and then the week before I am due another one I get that taste off and on. Maybe that is a sign it is getting out of my system and so I hope by the 3rd week after this last tx I will be able to breathe better. That is what Herceptin does to me. Makes it hard to breathe. I had a MUGA before I started chemo then one after TC and then I had to have a complete heart checkup because my pulse rate was so high after radiation but it was from my low rbc. I was in great shape as far as the heart so I am not worried about that. I was expecting a MUGA every 3 months too but it is Nuclear meds they put in you so maybe they think it is best to check less. I do not know what is the protocol and seems all onc are different in what they do.
I wish all of you new ones and easy time of it. I should have checked to see if I could get on short term Social Security disability during the time I was taking tx. I think you might can and so maybe you can not work for a while. Just a thought. It is worth checking on.
Carolyn
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Lisa, I have our Herceptin treatments plotted out on my Outlook calendar since I need to plan my business trips. Well really I plotted out mine, but since we started together, you usually get treated on the same day as me. I just put in the first one after chemo and set it up to recur every 3 weeks for 11 times (17 minus the 6 during chemo). The last one falls on September 28. With the 3 weeks after that, it comes to October 18 which is 9 days before the anniversary of when we started chemo because 17 times 3 is 51 weeks = 357 days and that's 9 days less than a year. If we get 18 Tx, the last one would be October 19.
Treatment 16 is a little problematic on my calendar. It falls on Labor Day so usually they would do it the day after, but I have to be in Europe that week on a business trip and I was thinking about some time before that for some personal time there, but I don't think I'll be able to do that because I'll need to get the treatment close to the right time before I leave. I'll have to discuss that with her before I finalize my travel plans. Can you tell that I'm so ready to be done with this?
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Arnie. On the day of tx they usually give you a couple of Tylenol and Benedryl that is why I said that. Don't want to OD on them. The after cancer pill may work fine on you, that is why I say everyone doing all this has different S.E.'s. I say the surgeon yesterday and he said the soreness at the mastectomy sight is the radiation. That is why it may take a year to heal from the soreness. Nice to know that is it and nothing else. Since all this seems like any ache or pain I panic and think it is cancer. Normal reaction I think. Pain somewhat subsiding after stopping the Arimidex. Thursday will discuss with my onc what else to take.
Thinking about all of you and hoping now that it is summer your getting out and enjoying the day. Well all but you guys back East...what is it with your weather back there?? Does it rain like this for you like this normally?
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Ipohgirl: Glad you got the scary part behind you. Sorry you got hold of such a jerk. I guess there out there, but I was so fortunate I always had very nice ones. Treated me like family. On the dark mark yes it will be red then turn a sort of brown color. It is important not to get in the sun cause as it fades the sun can make it permanent dark mark so knowing how you feel about that just make sure afterwords from now on you protect that area with a sun screen. My brown marks haved faded, but you can outline if you look careful enough to see where the tx was. I would rather have you with a red mark and alive than buried without any marks. My battle scars are more visible than most of you, but I am alive and without cancer so that is the trade off. Think of it this way the next time you THINK you are scared. Visualize me with no hair, one boob and a poop bag on the side of me with a cho cho train scar the whole length of my belly. Now when you do that I am sure what little bit you have does not compare with ol cupcake here. If I see myself still beautiful you can too. Yes today I have hair, today the bag is off, but still I don't have the body I used to have before dx, but I AM CANCER FREE! As you progress in RT tx your skin in that area will feel like a sun burn....just remember how a sunburn feels and you don't want to put hot water and soap on it. It dries it out more. Be gentle and after shower use a very good moisturizer like JoJoba Oil or Lubriderm intense skin repair. I liked my 99% Aloe Vera moisturizing gel. It is what I used to put on sunburns and it works great. You can get the 99% at a health food store. The Aloe Vera at most stores has to much alcohol and other junk in it and this is pure.
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Ladies - the Chillow arrived today!!! I am prepping it up now (filling with water, letting it sit, etc.) I am SO excited to try it tonight. I will post tomorrow on how it went. It doesn't take much to make me really happy these days. It's the little things, I guess.
Also, my husband had (minor) hernia surgery yesterday. It was very simple and went totally fine, BUT it felt awfully strange being the one sitting in the waiting room, and the one who is waiting on him for a few days. It certainly makes me appreciate him more for all he does for me. I think this little role-reversal is probably good for both of us.
This is my 'good' week and I am thoroughly enjoying feeling good. Now if the Chillow helps keep my head cool tonight, things could be just WONDERFUL! Stay tuned tomorrow for an update!
Amy
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I start TCH on July 13th. To tell the truth - I am more nervous about having the port placed. This is my 2nd diagnosis, but my first (and hopefully only) time with chemo. So glad to get info from all you girls who have been there!
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Backagain: Don't worry about the port placement. Pretty simple procedure. I was awake through mine, just used Novocaine to deaden the area. Got up and walked out. It is considered surgery. It will feel strange for a few days...sort of like having an alien inside you. I didn't want to move or lay on it, but you come accustom to it and forget you even have it...until you have chemo days then it becomes your best friend. I'm done, but still doing Herceptin so use it every three weeks. After done I go into surgeons office and he takes it out. Sort of like those tubes they put in you for drainage. No biggie
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I posted this is the March chemo board too....
I have had a new side effect come up this week. My saliva glands right under my jaw line are swelled some and are a little painful when I push in on it. Has this happened to anyone else? I will be going to see the onc on Monday right before my last chemo treatment and will ask him about it then, but I need some advice.
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Blue, thanks for the herceptin math. I am so ready to be done with this. I am tried of planning my life around infusion appointments.
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ccbaby, My saliva glands were swollen before I started tx and now they are very tender. If I put a piece of hard candy that is only slightly tart in my mouth my jaws hurt so bad. I have never had this before cancer. I have a dry mouth too.When I touch them on the outside it hurts but I have an autoimmune disease and this was blamed on that. I will be interested to see what your onc tells you. I know this is not normal. My onc blames everything he does not know about on my fibromyalgia and arthritis. this really stinks. I can live with it but why is it doing this?
I had done my Herceptin math too but I had to go 2 past the time I figured to be finished and was really disappointed. I hope no one else is. I do just have one left on July 8 and I will be ready to finish. I ask why I had to go longer and he rambled something about when I started and the last one not being a year so we would do another time. It did not make sense to me because I know I had done the counting.Oh well just one more. When he first told me over a year I could just see it being another 6 months so I am happy it is not. I was also afraid he saw something he had not told me.
I just wonder how you know if you are cancer free or not. I have the mammograms of course but what if it came back in the bone or liver. I am not sure I would know and I do worry about that some but not enough to bother my life. Just makes me say " hummmm"
Have a good day everyone. I hope all is well with the ones still taking TCH. I know you do not feel your best but you will finish and start feeling better. it will come even if you think it will not.
Carolyn
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Christy, maybe you should give them a call today and just check and make sure it's not some kind of infection. You don't want to feel lousy all 4th of July weekend! Good luck.
Becky
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Hi Ladies.
I was scheduled for my first Herceptin only infusion today at 9:30. Well, yesterday about 5:30PM, I got a message that my onco rescheduled me for July 10. I had no idea why and had to wait until this morning to call. Finally got a hold of a nurse and she said that due to their recent merger, they had too many patients today and not enough medicine. Well, I hit the roof. Delays b/c of low blood counts or infections are one thing (still highly disappointing) but clerical errors should never be an issue. My husband had rearranged his work schedule to be with me, too. Needlessto say, I gave her an earful. This had been scheduled for a month and any herceptin that had been in the storeroom was ordered for me! She eventually came back and said they could take me at 2:30. If you can take me at 2:30, why not at 9:30.
I have been extremely pleased with my onco up to this point but is this what it's going to be like with the new merger? Should I be put on the back burner b/c I'm done with chemo and ONLY taking Herceptin? Things like this get me so angry (used to roll off my back), but I want these next 11 treatments to stay on schedule so I can be done in 33 weeks! Am I blowing this out of proportion?
Sorry to rant!
Maggie
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