Taxotere, Carboplatin and Herceptin
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Cupcake, I would not even suggest what you should do about the rad. I want to quit everyday but I don't. I had a large tumor and 3 nodes involved and the surgeon and onc said rad was absolutely needed. I was stage 3 with the sentinel node as large as the tumor and then 3 others with cancer. they took 22 nodes out. He said he took all he could find. If you do the rads just use lots of cream (my rad office supplies mine) and wear soft clothing. I had tried to wear my regular bra since it was soft I thought. the seams were killing me since my breast got so swollen. It is not easy for me to find a sports bra because of my size but I found some at Walmart but not really what I need but at least does not hurt and I wear a very loose shirt over the shirt I have over the sports bra. With reaching and all I have to adjust things from time to time but I will get through this. My brother died yesterday but he was in such pain and bleeding some place that they could not find. His platelets were so low they could not keep them up and I believe he had cancer in other places but they had not told my sister in law. I am so sad and I also am sad for her too. I think if he had not had radiation first then he would have been in better shape but then who knows but God.
I do think the chemo treatments get a little harder at the last 2 because of the build up in your systems but don't let that stop you from doing what you can. Just be careful! Wash your hands,try not to be around sick people but we all know that is hard to do.Drink water, lots Rest when you can. I think the rest is so important, was for me at least. Everyone is different on how they handle this stuff. I did not get the tingling in my toes and fingers until after the TCH was over and I had other things happen after all this was over like hemorrhoids. I was taking care of my hubby though since he had bypass surgery right after my last tx. I think that took some of this stuff off my mind too. Hang in there everyone, it will be finished soon. I don't mind the Herceptin and the rad together as much as I was afraid I would. It may get worse but right now I was just tired. Work is not fun with my tiredness but I need to do it not only for the money but to get me up and moving again. Winter is hard for me as it is.
Carolyn
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Carolyn, I am so sorry about the loss of your brother. Please accept my prayers for you and your family. You have had such a hard year, but you handle it all with grace and strength. May God Bless you.
Lisa
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Carolyn - I am so sorry to hear that your brother died. I have been praying for him. I will continue to pray for his dear soul. Stay strong and centered....what terrible news. I hope that the rest of your family is doing well.
Blue...my creatine (sp?) level was slightly elevated and my doctor sent me for a renal sonogram which showed normal kidney function. I requested additional hydration and they gave me about a liter of fluids. I also stopped taking the Aleve I was taking with my Claritin after the Neulasta shot. I've been drinking more water (with cranberry juice) and my creatine levels have dropped slightly. Oh, one more thing, my doctor slightly lowered my dose of Carboplatin and put me on high blood pressure meds because my pressure was spiking. My doctor also cut my dose of Decadron by about half. I'm told that all of these things are side effects from the chemo with Decadron and that they should work themselves out over time. I hope this helps.
Cupcake.....I'm sorry that I can't help you with your rads question. I do think it is a great idea to get another opinion and then make up your mind from there. Be sure to ask about how the rads will affect the possibility of future lymphedema. Good luck, dear.
It's been absolutely freezing up here in New York. My box of heavenly hats has come in handy on more than one occasion. I spent a lot of money on a wig from a local wig salon and then I ordered a spare one from TLC for about $40. I like the wig from TLC much better....go figure. I guess it's probably better to go through something like this when everyone is in for the winter and the kids are in school.
I finished my Tx#5 and I am VERY tired and all I want to do is sleep, sleep, sleep. I guess that is what my body is craving, so I think I will give in to it for today. You ladies are a source of strength and encouragement for me and I want to thank you all for your help and advice.
Stay strong everyone.
Anne
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Carolyn: I am so very sorry to hear about the loss of your brother. That is the awful outcome of this awful disease that is so far gone. My heart is so heavy for you, but I do believe you said he was a believer and for us Christians we know where he is and that does bring some comfort. I will pray for you and your sister in law at this difficult time.
Lisa: You are so cute...Cyber machine hugs. My cold is just awful today. This is the first one since I had nose bleeds etc from the chemo and the poor little thing is just racked. I'm still not sure how still I can be. I don't remember who wrote this, but I am going to gather up all the charts of this journey and take them to a cancer center close by and have them review it. I think that was a good suggestion so who ever sent it thanks. If I get through today I have the weekend and Monday to recover before more test hit next week. It broke my heart but I had to cancel the cruise. Lost some money, but it just is not the right time. I still have the canceled train trip too sitting there too. I will try and work that one in, but this journey just takes so much time and it has to take preference. I do get weary at times and last night was one of them. I think the cold lingering on just magnifies the whole sickness thing. I am tired of being sick...I need a little sunshine now....
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Carolyn, I am so sorry abouth the loss of your brother. I wish there was something I could say to make you feel better but there isn't. I will keep your family in my prayers. Traci
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Hey All Does anyone out there have a port? And has anyone had troubles? I had mine in on Tuesday had it flushed two days went in this morning my Onc ordered CBC they couldn't draw blood from it ,it started then would not come out. Is this normal?Im a little concerned so Im reaching out for help. Thank you Paula 0 -
Carolyn, my condolences on the loss of your brother as well. And thank you for continuing to advise us even in the midst of your sorrow..
Cupcake, I'm sorry you had to cancel your trip but it sounds like a wise decision. My congestion has cleared up a lot since all this rain has washed the air so maybe mine was allergy rather than a cold. But I'm sorry that the rain that brought me relief has also deprived you of sunshine. We do need the water, but now the rain has stopped for the moment and left us with dreary clouds instead of sun. Hang in there - we are suppose to start seeing some sun again on Monday.
I hope you find some helpful advice regarding radiation. I'll have to go through it since I chose the lumpectomy but having to cope with possible burns is somewhat daunting. But these HER2+ cells can be so aggressive that there is a good argument for doing everything we can to knock them out.
Anne and Lisa, it sounds like we are all making adjustments to cope with Tx 5. At least there is only one more to go. Good luck on your MUGA Lisa. My onc did one half way through chemo and says she will do another after Tx 6 and then go to every 3 months. Anne, I think getting better hydrated helped my creatine levels but now I'm struggling with hydration again.
Today I start my Neupogen shots again. They make me feel crumby but I know it is worse without them. My onc wouldn't let me try Neulasta instead. She said that it was just as likely to give me bad side effects and because it is slow release I would be stuck with them for longer.
I think I'll take sick leave Monday and Tuesday in addition to taking it easy this weekend. The cumulative treatment is getting to me and I'd rather slow down now to feel better later. Monday I go in for a blood test to see how things are going. I'm feeling like a pin cushion. I had my regular pre-chemo blood test last Monday and my onc was worried about my platelets and creatine so had me retest before chemo on Wednesday. They were both better but my RBC and hemoglobin was down but not yet to the point where I needed a transfusion. I have the port, but only the nurses can use it so the phlebotomists still tap the veins in my arm (or worse the back of the hand).
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Rockstarmom: Paula you are perfectly ok. That is a normal response from the ports. Sometimes they suck up against the wall and of course you know they arn't going to return blood. Then sometimes they have little stringy things that work fine when something coming in, but when you go to draw back it clogs up the hole. They have special things to do to make sure they are in correctly. Sometimes they can't get a draw back on me, but they know it is in cause the saline doesn't build up under the skin so they know they are in. It is just a precaution to know they are in correctly.
Blue: Thanks
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Thanks Cupcake I will now return to breathing easier !Thanks its all so new and when something doesn't go right I worry, but all you beautiful ladies out there are Angels I appreciate you all so much to get me through, Im just a rookie only 1 Chemo under my belt so I will be with you for awhile. 0
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That's ok Paula I was a super green rookie when I came in here. Scared to death. That will be your legacy for you to do when you are almost done with your chemo. You will have learned so much and there will be a new batch of campers coming in that you can reach back and give a hand to. There was the older ones that helped me when I was so green. This is certainly a scary journey with so many new things to learn. The best thing to do is to ask..that is what we are here for.
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Paula, it can also be harder to access ports right after they are put in. When my port was new, the skin in the area was still swollen in spots so it didn't lay flat and that made it harder to access. Also the incision made it a bit harder to feel its position.
That is particularly true with the Power Port which has a smaller hole than some of the older ports. When not being accessed, it is nice having a smaller port.
Cupcake is right too about them being able to tell if it isn't in when they push the saline. Once mine wasn't and the saline built up under the skin which didn't feel right so I told them.
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To all New Campers: There are no stupid questions, no stupid emotions and no stupid fears. We were all there at one time. You ladies that have just had your 1st or 2nd tx probably won't believe me, but it feels like just a few weeks ago that I was in the same boat. However, it also feels like I have been living this forever, because it can take over your life. That is why it is so important to find a balance whenever you feel good enough.
Cupcake, How was the MUGA? I will get my results Mond. The first MUGA was a 68. I hope the number stays close.
Blue, I am happy to hear you are taking a few days off. I think #6 THE LAST will go much better for you if you give your body a few days. Remember, when we kick this, we have a lifetime to run, run, run, go, go, go!
I am still tired. This has just been a long week for me. My energy comes in spurts. Also, this last tx messed with my already compromised digestion so that has slowed me down and made me miserable. But all will be fine. The Fla sun is back out, the icky taste should be leaving soon and I am on the home stretch!
Have a nice evening all!
PS: Cupcake!!! I just realized how close you are to Santa Rosa and the Napa Valley! My camping buddy just became an aunt for the first time and the baby girl is in Santa Rosa. We have been wanting to ride the Napa Valley together for years, so now we are trying to plan a trip that way together. My friend will be a frequent flyer to the area for the next 18 years!
Lisa
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Ok, wise women, I need a little encouragement here.
I'll try to make it brief. In August I had 6 nodes removed and one was positive. I did 6 rounds of TCH which ended 12/24. I am doing H for a year. I had a bilateral mastectomy (no more nodes) on Wednesday and the doctor called last night with the path results. My left breast was clear (which I knew). My right breast had DCIS still (which we knew) but also 1.4 cm of IDC left.
The surgeon got clear margins and we are going to move forward with my plan for rads in 4-6 weeks.
Will that be it for now? I am disappointed that after 6 rounds of TCH there was still IDC. I am worried about what the means for my long term prognosis, and also if I will need more chemo.
Any insights? Thanks. I've been pretty strong through all this but am feeling pretty down right now.
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Cupcake & Blue Thanks for the kind words and great knowledge, I am thankful I found you all it is an honor to be here with you all we are Brave Women! Together Is Better. Something else I started my period yesterday and it is the worse I have ever had, Is this normal??? Will it be longer than usual???? 0
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Lisa: Good information for anyone in here. I have a good one now too and will ask it at the end. I didn't do the MUGA, had to cancel cause this cold was so bad I couldn't sit still for an hour for the test with the sneezing and coughing. I scheduled it for next week. Napa Valley is nice and lots of wineries...well actually it is ALL wineries. Calisgoa, close by is a small hippie kind of town nice to see.
Kift: I can't help other than to say I know it is so hard trying to figure all this out. I'm in the same boat. I'm sure someone in here can give you an answer or at least lead you in the right direction. I do know the rads is to get everything else that is left over.
Rockstarmom: Can't answer that one either other than with this dx we look at everything going wrong in our body has something to do with the cancer or the tx. We love you too.
Ok here is my question. Did anyone have to sign a paper and have the time, date and witnessed to go into rads? I didn't even that on the chemo treatment.
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Thanks cupcake. Is it too much for us to ask for guarantees?
I guess so.
I'm Katie by the way. Forgot to sign it.
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Hi everyone:
I've been a bit of a lurker these past few months relating to this topic, but have a question I'd like to ask you before I add Carboplatin to my Abraxane/Herceptin mix on Tuesday.
How much impact from a SE perspective do you think that Carboplatin has with your TCH chemo cocktail?
I ask because I'll be getting my 5th treatment on Tuesday and aside from being housebound for the first week of my 3 week treatments, I have been tolerating chemo about as well as one can under the circumstances. I have children and I start planning my "chemo week" ahead of time with meal prep, transportation and child care to help when "I'm out of commission". Usually by Saturday of the 1st week, I'm able to care for my kids again even if it's just in a limited way.
My concern is that with the addition of Carbo, should I expect to be "down for the count" for the first week (or two?). I know everyone's different, and it may be difficult to isolate the SEs for just Carboplatin but it would be helpful. I was on taxotere 5 years ago and I know what a beast it can be for SEs but it beats the heck out of cancer. I've been seeing many posts about low red counts and platelets, but can't figure out from the posts whether it's the taxotere or carbo. I know my white counts were "rock bottom" with taxotere but didn't have a problem with red counts....
Good luck to each of you.
klfh: I just saw your post. I'm sorry to hear that you still had some IDC left in one breast. I, too, found that after 6 cycles of chemo I still had some microscopic cells even though all the tests showed I was "clear". I did choose radiation and, after a short break, opted for 6 more cycles of chemo. Keep in mind that not all chemo is "knock you down, spit you out strength" chemo. The next chemo I was on was no way near as mind numbing as the first time. In fact, I didn't even lose hair. It was very effective and I was NED for about 1.5 years. Because I was ER-/PR-, I was pretty much sent home "cold turkey". Back then, Herceptin for non-metastatic cancer was not an option. My onc says to this day that she's pretty sure that had I been given Herceptin for 12 months (as is now the protocol), she doubts that the cancer would have returned so soon. Keep in mind that my quality of life has been great and I mention this because there's every chance that you'll do even better. Hang in there.
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Hi Katie nope no guarantees with this, but a very good chance of complete survival with us being HER2 and able to get the Herceptin. I think, at least for me, the worry is a part of all this. I just had to turn it over to the Lord as it got just to heavy for me to carry.
Hi Mason and welcome in. I have no idea with Carboplatin mixed in at a later time. I have heard of some that has that regiment. For me I get the TCH all at once and then the H every three weeks, after the initial 6 months of the three, to complete out the year from the beginning. I know the Taxotere was the bad boy of the three. I never got the low red cell count though. Sounds like you really have a good schedule plan in place. I just can't imagine how you ladies do all this with children to care for...big hats off to you.
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Mason, welcome.
I don't know about the s/e's for what you have been getting, but what you discribe is exactly they way I have been with my 5 TCH's. "Chemo week" I lay low, don't have much energy, etc. Then by the following Sunday, I am good to go. There have recently been some glitches there with dehydration and low blood counts. Hopefully, your routine will stay the same.
Cupcake, sorry you didn't get your MUGA yesterday. Hope that cold is getting better. I will have to look up Calisgoa. Thanks for the tip! Also, my mom had to sign for brain rads.
Katie,that is a tough question. I hope someone here has the answer. Hugs!!
Lisa
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Cupcake I think you and I have the same treatment 6 rounds THC every 3 weeks H for a year radiation???Are you done with your chemo I tried to look back to see if it was posted gave that up figured it was easier just to ask. Did you have lumpectomy or mastectomy? Mason: Welcome I Don't know either about what the Carboplatin added to your regimen will change I have had 1 treatment of THC I am on day 13 have felt great and worked my fulltime job I have been so fortunate.I wish for everyone of you to have good days always!!! I keep taking one day at a time , Have a positive attitude always,Laugh Alot,Try not to worry much,And keeping praying everyday for the strength to make it through it all. 0
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Cupcake I think you and I have the same treatment 6 rounds THC every 3 weeks H for a year radiation???Are you done with your chemo I tried to look back to see if it was posted gave that up figured it was easier just to ask. Did you have lumpectomy or mastectomy? Mason: Welcome I Don't know either about what the Carboplatin added to your regimen will change I have had 1 treatment of THC I am on day 13 have felt great and worked my fulltime job I have been so fortunate.I wish for everyone of you to have good days always!!! I keep taking one day at a time , Have a positive attitude always,Laugh Alot,Try not to worry much,And keeping praying everyday for the strength to make it through it all. 0
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Cold much better today. I needed yesterday to take the benryl and being on that stuff just makes me a zombie. But today its almost gone.
I have finished my chemo and then had a modified radical mastectomy and now waiting for the radiation. I have decided to go ahead with the plan of radiation, but still would like to know if it is normal to sign a statement and have it witnessed. That is scary. You would think they would do that on the poison they put in you with chemo. I signed up for a 7 day cruise to the caribbean the last of August so this time with everything done I will have more likely of a chance going on this one. I sure can't remember if there was a hurricane in August of this year. I know the season is May - Nov. So its right in the middle.
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Just popping in for a hello. Tx#5 went better than expected. I'm just VERY tired. Trying to stay positive and eat, drink, rest, eat, drink, rest. I will be back in a few days.
My love to you all.....stay strong ladies.
Anne
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Cupcake, glad you are feeling better. You should be OK with the cruise in August. I live in what became "Hurricane Alley" in 04 and 05. We had 3 direct hits (eye went right over us) and 2 close enough that we got the nasty side effects. All of those storms were Sept. and Oct. Oops. Charley was in late August, but it came in thru the Gulf of Mexico - not the Atlantic side. Glad you are feeling better today.
my2boys - Just rest, rest, rest. #5 kicked my fanny. Today is 7 days out and I am just starting to feel human. Hang in there, we are almost done!
Lisa
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Anne and lisa: You both are seasoned chemo campers now. I hear in both of you being more relaxed resting in the knowledge you have now. You were both so unsure at first what to expect and now you know and although hard you have it handled. Knowledge is power for any newbies reading this. At first it is so overwhelming, but as you go along and learn how the chemo SE hit you (everyone being different) and especially the down time,and knowing you WILL feel better in a few days,it makes it so much easier. Having No 5 under your belt is HUGE! One more and your done. The last one you know this is it...get through this one and won't have anymore. VERY tired is one SE that is universal,and we can all count on, in this treatment.
Thanks Lisa on the heads up on the hurricanes in the East Coast. Most of the times they just reposition the ship to somewhere out of range of the storm, but looking forward to that beautiful Caribbean water. I still haven't heard from anyone if they had to sign a paper before they got their radiation and have the date, and time witness by someone else in the room. That just sounds so bazaar to me. Did anyone in here half to do that??????????
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I had to sign a form listing any potential side effects (heart problems etc.) They wanted to make sure I was aware that it could damage my heart and a bunch of other things I did not read. It is like when you have surgery. They tell you it could kill you to cover their a**. Radiation is every bit as serious as chemo. They just wanted to make sure you understood that. It is no big deal. The witness thing is normal. If you look at all of the forms you fill out at the hospital it has a place for you to sign and a place for witness. It is part of the HIPAA standards. This is not something to worry about
I am starting my 4th week of rads. I was wondering if anyone else started to get tired halfway through? I am dragging a bit by the end of the day.
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Thanks Tracy it is good to here someone say they are not trying to stick it to me. I would have thought they would have done that with the chemo too.
FINALLY gals got an e-mail from the onc and FINALLY she agreed with me that I do have "Occult Primary Cancer with Axillary Metastases". FINALLY I hear it. Now that I know there is a name to my cancer...some of you have Ductal, some have Lobular etc etc...I had nothing. I know it is rare, but all I have read sounds just like this. Now I can go with what the studies show to be done with what I have and they do say ..."Occult primary breast cancer presenting as an axillary lymph node is rare and represents a clinical entity with an outcome better than that found in patients with stage II breast cancer.""Therefore , by analogy with other stage II tumors, irradiation of the upper axilla can be recommended in these instances,". So you can see everything points to a treatment. Remember I was first stage as a IIIA. I feel more relieved, but kina scared me a lay person big time have to look all this up and try and convince the doctors to look at it. I think I will be able to sleep better tonight.
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Hi, my name is Shari and found out a week ago that I will need Chemo as a preventative. I was diagnosed with Stage I and no Nodes involved. The cancer is HER positive. I go for my Pet Scan and Echo on Wed. This has all been such a whirl wind for me. My regimine will be TCH every three weeks for 6 cycles, starting Feb. 12th. And just like many of your concerns that I read, loosing my hair has been the hardest to cope with. I find myself getting depressed and hiding my feelings from my family. I am usually a very positive person, I have tried to go back and read some of the posts to find out what to expect and it really seems to vary with each individual. Any suggestions of what I should do before I begin this journey?0
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Cupcake:That is wonderful news!! I have never heard of it, but if the outcomes are more favorable than Stage II, that is great. Now you can take a deep breath and move on!!! Yippee!
Smile: Welcome to the TCH campers. Sorry you have to be here, but we really are a great group of people, even bald! Yes, you will lose your hair, yes it sucks, no it is not the end of the world. I am one of the most vain people I know (never leave the house without a full face of makeup), but you get used to it. Just remember, it is temporary. It is just a small bump in the road of life. You need to regain your positive attitude; it will get you thru this.
As for what ot expect, as you read thru this thread, you will see that everyone is different, but some things are pretty constant. The biggest consistancy is fatigue. Move when you can, but give in when you have to. What to do first: Get your house as clean and organized as you can!! It will keep you from going nuts when you don't have the strength to care. Read the thread about "chemo kit" - what you need to have on hand for any and all potential side effects. I never used half of mine, but I was happy to know all items were in the house should I need them. Have your head gear ready; wig, scarfs, caps, etc. that you plan on using while you are hairless. Most ladies start losing their hair on day 14 after tx #1.
Most importantly, try real hard not to lose sight of your hobbies and what makes you happy. It really makes a difference and helps you retain your identity.
Good luck and everyone here is on your side.
I also see you are directly across the state from me. Close enough if you need a buddy!
Lisa
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Cupcake - I'm glad you are finally getting the answers that you have been looking for. The miracles are happening for you and this makes me so happy. I think that planning a vacation is a wonderful idea.....my hubby and I were just talking about the same thing yesterday. I am sure that the coming months will be a wonderful reward for all of your hard work.....plan away!
Shari - Welcome to our little group. I am sorry that you are going to have to deal with chemo, but I am happy that you found us. I think that Lisa's advice is great. The hair thing really got to me too, but as Lisa said, you get used to it. Just for the record, I never really lost ALL of my hair! There is still about 1/4 of it left. I had it buzzed very short and I wear turbans/wigs/hats to cover it. If I might add one more bit of advice that I found to be very helpful......before I started chemo, I asked for help from a few close friends. They were all eager to help and they are my support system. For example, I asked one friend if she could be in charge of driving my kids to religion each week.....another friend is my plastic surgeon companion....another friend is my "cook a dinner if I need help" buddy. These ladies have lifted the weight of day to day responsibilities from my tired shoulders for the past 3 months and it has been a great help. If you line up your help before you start, you will be able to rest easier and get well.
Best of luck to you.
Anne
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