Taxotere, Carboplatin and Herceptin
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Jaimieh. I am still on TCH, but I always get Benedryl first and then Herceptin. I think they do that because the Herceptin is the most likely drug to have a reaction to.. After my first treatment I had them cut my dose of Benedryl in half, because it made me so dizzy and tired.... so no I get 25 mg, and it seems to be fine. I think they will continue it even when I am on Herceptin only, but I don't know yet.
AMY... Wow, good for you. I like the way you take charge of yourself. We all need to have you rub off on us. We need to take charge of our own care and get what we need, and be aware of everything they do to us and why., also know what drugs you get and check to be sure you are getting the right things.... mistakes happen,especially with so many different nurses dealing with so many people. At my hospital , where I get everything done they always have 2 nurses double check each new med they put in the IV.
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Jaimieh -- For herceptin alone, I got tylenol and tagamet the first time, then just tylenol once or twice, and last time I got nothing and was fine. Benadryl knocks me out and actually makes my legs jumpy so I hate it.
And ditto what cakelady says -- I have my husband doublecheck my dose for everything. I have a printout of all my meds.
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Dear Ladies,
Hi again after a long lull. Was down till yesterday (day 10) of my fifth TCH. The last one wil be next Wed if things go well. Surprisngly, my neutrophil readings was the best this time, yet I feel so very weak and tired.
Had terrible diarhea (without the pain, just bloating) for five days and a mild fever. This is the worst cycle yet - had breezed thru the first four excluding the excrutiating bone pain for the first.
Glad to note everyone is doing well. Lisa, I noted your report on our darling cupcake. I do miss her writings on this thread.
Talk more later, gotta take my nap now.
Love and hugs,
Ipohgirl.
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Oh my gosh I had a really bad nosebleed this afternoon, I told my 17 yr old son he needed to take me the the hospital. But luckily I got it to stop after about 15 or 20 min. I used a small towel, an ice pack and pressure, but it was scary. I hate that. The hospital is about 30 min away. I was worried because of the blood thinner I am on. Seems okay now. About 3 hours later our power went out in the whole neighborhood, it was just getting dark. It was out until 9 pm.... oh what fun. Someone hit a power pole a few blocks away.
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Not sure if this will help anyone, but this is what I learned at the doc's today:
I have been having progressively worse nausea since treatment number 3. I asked him if it was okay for me to extend my infusion time in an effort to reduce my nausea. The doc started to ask me questions about my nausea. I told him that initially I wasn't sure if I was hungry or nauseated. He told me that I have gastritis due to the chemo. When he examined me, I asked him to check out my lungs because I have a strange sensation like the start of a sore throat and it feels weird to breathe deeply. This, he said, was due to the gastritis extending up into my esophagus.
Now I am on some funky medications (Carafate and Nexium) that I have to take for the next six months. I am hopeful that the medications will make my last round of chemo much easier.
Here's wishing us all a week of fewer side effects and at least one really good belly laugh.
Cheers!
Cloud
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Thankyou all so much for taking the trouble to answer me . Hope everyone is doing ok today
Hugs
Anna
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I am so disappointed and scared. Went in for my 3 week Herceptin yesterday ( one week late because of port issues) and was told by my onc that my MUGA results were too low and that I have to wait 6 weeks for a new hopefully better scan and result. I was shocked! I really don't feel bad except for being tired at night which I attribute to heavy duty rads. 8 more days to go and have had 28. Wow, this is a bummer,
I have read conflicting information on whether the heart can recover from chemo damage or herceptin. I am so confused although I do understand tht Herceptin hasn't been around long enough to have conclusive studies on optimum treatment times etc. I had no problems all through chemo but developed a reaction at the first 3 wk tx. The last time they gave pre-meds and it took 6 hours to drip. No problem.
Yesterday my port worked fine. I have had 2 weeks of tries to draw blood, multiple injections of drug to get rid of clots and having to endure a damned IV for the MUGA. turns out the port is resting against the vein . Worked yesterday so I took that as a sign that all would go well. HA, HA.
Onc. said she didn't want me to have heart failure. Heart Failure, what the hell!!!! Thanks for letting me vent. Hope i didn't yell too loud. Has anyone else had this happen to them? I am praying all will work out and that this is just another f;;;;; bump in this long and winding road!!!!!!!!!
maja0 -
Carolyn - What a rough situation to go through! I am so sorry!! I have heard, however, that the enzyme CoQ10 is very helpful in regenerating cells and helping the heart recover from damage, or preventing damage. I know I am not allowed to take it during chemo (because it is an antioxidant) but I intend to start again (I actually took it prior to dx) as soon as I am on herceptin only. Perhaps you can ask your doctor if it might help you.
This whole journey has so many twists and turns. It is hard enough to accept what they tell us is going to happen. The unexpected stuff makes it so much more of a challenge, I think.
Good luck to you and I hope all goes well. If you ask about the CoQ10, I would be curious what the doctor says.
Amy
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Maja, I agree with Amy, get so Coenzyme Q10. My MUGAs are holding steady at 64 with 4.5 months of herceptin to go.
Please keep us posted and hell louder if you need to.
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Maja I have echo's because I am a chicken and didn't want anymore needles. Anyhow 2 echo's ago I came back with an effraction rate of 46 BUT it was caused by my pulse rate being high due to low RBC. This past echo. I was at 55 and it was still noted how high my pulse rate is 100. So the point of my story is to ask about your blood counts.
I get to go back to the infusion room for 6 hours for an infusion. I'm not happy about it but I sure know that I will feel better once it is done. I then have to run around like a crazy lady to get my pre-op stuff done before Friday. I don't like having to go to different places for blood and then x-rays but I will do it and hope that I get the all clear.
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Carolyn, sorry to hear that you've been having a tough time.
Everything I've read says that heart recovers from damage due to Herceptin. There are some older posts on the HER2 positive section of this board where people had to stop Herceptin due to low LVEF and then it came back up. The BCIRG 006 study shows the LVEF coming back up after TCH and the year of Herceptin to about where it started. The damage from Adriamycin doesn't recover as well so the chart for LVEF on those who got AC-TH doesn't show as much recovery - perhaps the people who have had both Adriamycin and Herceptin are why you have seen some conflicting info.
They monitor LVEF so that you don't get to the point of heart failure. I think she was just trying to explain why she was having you take a break from Herceptin, not that she expects you to have heart failure now.
When I was starting chemo, my onc told me that in Europe they generally give Herceptin for only 18 weeks. She would give it to me for a year if my LVEF stayed up because that is the standard of practice in the US, but if we have to stop it early I shouldn't worry. The FinHer study gave Herceptin for only 9 weeks and still had about 50% better recurrance free survival than the non-Herceptin arm so even that short time can be very effective. There haven't been any studies that directly compare 18 weeks to 1 year of Herceptin so we really don't know if the extra time has an advantage. You've gotten Herecptin for about 6 months so even if you had to stop now, you've probably gotten most of the advantage out of it.
I can understand the disappointment - we would all like to know we have done the most possible to fight this coming back. I'll be praying that this works out for you too.
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Maja: I took coQ10 during Chemo! My onc said it would be fine. I started chemo with a 72 and ended with 75. I attribute this to the co Q 10. Give it a shot. It has no side effects. My onc is one of the most famous in LA she would not let me do anything that would be counter to chemo believe me. So ask yours. Are you able to walk and keep your strength up at all. Gosh I hope that you can tackle this and finish your active treatment. My thoughts and prayers are with you.
Jeimeh: You are sure doing a good job. Its hard huh? But be proud of yourself you are doing it with grace.
Hope everyone is hanging in. This to shall pass. Its weird we are suppose to live in the present but I can not help but to look to the future free of SE!
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I thought I would share this with you girls. I talked to a lady today that had breast cancer 20 years ago and has been cancer free ever since . I don't know all the specifics of her cancer but I know that she had chemo but no radiation. She said it didn't run in her family. I did ask her if she changed anything in her lifestyle or eating habits afterwards and she said no, she didn't really change a thing. She wonders if it was environmental because she did say that when she was growing up that she lived in the country on a busy dirt road and 5 other people that lived on that same road have gotten cancer of some kind. And they used DDT then too. Anyway, it was encouraging to talk to someone NED for 20 years now.
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Jaimiah: Why do they give you Benedryl with Herceptin all of a sudden? You didn't get it with chemo, did you? Glad to hear your echo increased, but that pesky pulse is still up too high, huh? Have you tried some meditative breathing. It's just 10 slow intakes, hold and exhale, counting as you go. Take a pulse rate before and after, maybe it will help. Remember, you're my infusion queen, so I know you'll do well!
Ipohgirl: So glad to hear from you again, we were worried. Are all your blood counts up? You aren't dehydrated, are you? That's exactly how I felt when I was--I couldn't even sit up or keep my head up for long periods of time. Diarrhea will definitely dehydrate you FAST. Please have them check. By the time I went in, they couldn't find my blood pressure. I ended up getting 2 bags of fluid and it really helped!
Maja: So sorry you're having a hard with so many things at once. You know we're with you in spirit! Things will look up soon. Keep us posted, k?
Well, I'd prepared myself to be denied my LAST chemo scheduled for yesterday because of my low counts last week and then I caught the flu Sat morning. sigh. I just thought no way will chemo happen. I made it to my friend's wedding and the Cancer walk on Sunday morning though with lots of Advil.
Then on Monday morning my blood counts were revived and my fever had broken so they gave me the go ahead. I still can't belive it. I'm DONE. (well I still have chemo crash, but after that completely done!) My daughter went out and got me flowers and cupcakes from a bakery to share with the staff and chemo patients. My chemo buddy scheduled her dr appt that day and brought me presents! Unfortunately, I wasn't wearing my feather boa or sequined jacket because I was sooooo sure it wasn't going to happen--Negative Ninny that I am. But I was just trying to prepare myself so I wouldn't have a nasty meltdown.
Here's my daughter and I at my graduation:
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Christy I love when I hear long term survivors stories
My neighbor at our trailer down the beach told me her daughter had BC 14 years ago (and is still adding more). She saw me in my hat this weekend and was doing everything she could not to cry when she saw me. Thank you Bold for the compliment. I am really looking forward to getting my heart rate down 112 (today resting) and I need my RBC in normal range for my surgery next week.
Linda (Denali) Did you get your last TX ??? I have been thinking about you and I hope you have been quiet because you are in your last chemo. hole.
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We crossed posts, Jaimieh, read above.
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Oh Linda I am so happy for you
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CONGRATS!!!!!!! WHOHOOOOO!!!! OH BOY!!!! THANK GOD!!!!!!!!!!!!~! Denali!!!!!! I am so happy for you. Remember to take it easy as it takes awhile before this stuff is out of our system. I am so proud of you it has been a tuff one for you but you did it!!!!
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Hi Bold I have a question -- many oncs say to discontinue antioxidants 2-3 days before and afgter chemo. Do you do this with CoQ10?
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Hi all,
I haven't posted here yet but thanks to all of you for the encouragement and advice. I started TCH May 12th, had my second treatment June 3rd. Don't have a port like so many of you so we'll see how that goes!
Congrats to Denali!!
Question: Has anyone taken a vacation or tried to get away for several days during treatment? I was trying to plan maybe 5 days away between treatments on days I hope I will feel ok at the end of July. Guess I am afraid I might get sick while away.
Hugs to all.
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Congrats Denali!!!! Great pic of you and your daughter.!!!
Can I vent? I am 17 weeks post chemo,still on herceptin and taking tamoxifen. I am going to hell in a hand basket, physically and mentally. I am overwieght, have no energy, I am getting anixiety attacks. I am pissed off at the world. I am tired of everything I do being affected by cancer and cancer treatment. Chemo has aged me at least ten years in my physical apperance and I am damned tired of not having any hair. I cry at the drop of a hat. I know I need to go to the gym, but I just sit on the couch instead. This is not like me, this is NOT ME! I can't sleep becuase of tamoxifen hot flashes and that is just making all of the above worse. I am sorry to be such a baby, but I am just pissed off and tired of all of the above.
Lisa
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NYmom60 - Welcome. Bluedasher traveled all the time during treatment. I am sure she will reply and give you some travel tips.
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Lisa, I think the Tamoxifen is making you feel like this. It is keeping the hormones in check and that is like menopause. I really never went through menopause but I have been around women in the family that did and it is not fun for the person or those that live with them. You had such a positive attitude when you were going through the hard stuff (TCH) but this other med Tamoxifen is not easy either so give yourself a break. Tell the doc what you are feeling and see if you can get some help with the hot flashes. It is not shameful to take meds for that! I feel like I have aged a lot and I blame it on the weight loss and I am also sick of no hair but I do have hair it is just very short and only growing on the sides and back. I want some on top too. Everyone says I look great but I don't! I am working hard on my attitude too and trying to be positive about life but it is hard to do. Money for me is an issue but this too shall pass I hope. Sleep? What is that? It can really get you down not to sleep and I have had a week of bad sleep. My pain keeps me awake and the husband rolling around. I get cranky with him and he gets upset because he is not working. Well he works outside but if I get out in the sun I get big red spots on my arms and I hate sunscreen. I can't find any that smells okay to me. How do you manage to get out in the sun. do you wear sunscreen? I am a paleface now and don't like it.
I am sorry about joining in on your rant. I hope you can get some rest soon. I take benadryl at night for sleep and allergies but I also take other stuff to make the pain go away but it only lasts until 1 am. I think if you had someone to drag you to the gym for a few times you could get perked back up but I am just as bad. I dread going to work everyday. I need a push most of the time. I don't like my co-workers. They are all in a bad mood lately. I guess they don't like me either. I am older than anyone there, and ugly to boot. I remember when I was the youngest but I hope I did not treat anyone bad. Lisa do you have to take this Tamoxifen for 5 years? Did you have a hysterectomy?I had one when I was very young so that is why I may not have went through menopause. Ask you onc or a obgyn some questions. There has to be some help for you. Make them help you!
gramma23
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Lisa, I'm so sorry you're going through this. The emotional thing is quite normal after chemo. It's like our dr/chemo treatments stop as well as a good portion of lives we spend fighting SE's from chemo. Everything seems to happen so quickly that we never had time to reflect. Now we do. My tears were coming a couple weeks BEFORE my last chemo, in fact. I just dreaded going into the dr, knowing the exams were to see if I had more cancer instead of for chemo side-effects.
I decided to see a therapist who specializes in cancer patients (and had BC twice herself). I've seen her twice and it's wonderful. Just being able to talk to her about my fears was so cathartic. I'd told my daughter, but it just wasn't the same as talking it over with her. I had started a 'Gratitude Journal", which I'd read about online somewhere, writing down 5 things in my life that I'm grateful for each day. My therapist suggested I also write a list of all the good things that have happened in my life since cancer. My list was longer than I thought it would be.
Your dr could help you with the physical things, but maybe a therapist could help with the emotional side of this journey. Sending huge hugs!
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NYmom60,Welcome and I think you can plan a few days away from home if you know the days that are bad for you and also take some meds for just in case you get to feeling bad. Like anything you doc prescribed and any OTC your onc said you could take for SE. Just remember to drink plenty of liquids and don't get over heated and use your sun screen. I think it would be a great idea and I know everyone here will help with all your questions. I wish I could have taken some time away but now I am back to work and no fun in site:(.
gramma23
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Ladies, thank you so much for the virtual hugs and kisses as well as the well grounded advice. I am going to talk to my rad doc about the CoQ10 as that sounds like the ticket. He told me not to take any anti oxidents during rads but only have 7 more days til the end! Yeah. If it doesn't work maybe they can spread the herceptin out over a longer period. If not, I believe that I have had enough as Bluedasher pointed out in the various studies with different optimal time frames. I have given it up to the universe, God, the higher power and I trust my Docs to take care of my body.
Denali, love the pic of you and your daughter at your chemo grad! You are absolutely gorgeous and she is too. It is a proud feeling to know that you made it thru chemo. For me, it was the most difficult thing I have ever done.I don't think anyone can understand what it is like unless they have been thru it. You did it with great strength and compassion.
Lisa, I sure feel for you. I agree with gramma that what you are going thru sounds a lot like menopause x 10.First consider that most of what you are feeling is your hormones and that the rest of the world doesn't see you in the same light. Lack of sleep, HOT FLASHES, baldness, and weight gain are enough to put anyone into a funk.
I think that you should talk to your doc about Effexor. It seems to have helped many women on this board with the hot flashes and it also has anti depression qualities. Of course feeling like this isn't you!!! It will get better and you will feel good again. How was your visit to the chinese doc? Are you going to try the accupuncture? Hang in there Lisa, you have been my rock thru this BC bullshit!!!!!
Love,
maja0 -
Hi everyone-
I haven't checked in for some time for lots of reasons....back to work, taking turns with my siblings while my Dad recovers (?) from having his lung removed due to cancer and last but certainly not least has been my frame of mind. I haven't even started AL's yet, am on Effexor for hot flashes (works like a dream for me) and SUPPOSEDLY a little added benefit for depression. However, Lisa might as well been me in terms of frame of mind. I have been really, really down lately. Try so hard to snap out of it and sometimes am successful but on the whole am most definitely more down now then during chemo. I still have an expander replacement surgery coming up after my daughter's wedding and of course the Herceptin for quite sometime. Just had my after chemo MUGA and PET done and am anxiously awaiting Onc's call about why my tumor markers are up!! Can't fit into any of last summer's clothes, can't where tanks without looking down and seeing the prothesis that looks fine from the front. Can't bear the thought of wearing a bathing suit and I just love the beach. Between me and my Dad, cancer still dominates. I grieve my "old" life and the carefree (relatively speaking) self I used to be. Keep telling myself this is normal which it is and am surely not beating myself up over it. It's that point where the intellectual thought...."this is a process and I will get through it" just can't quite get to my being yet. It's so hard....I can't wait to see a little light at the end of the tunnel. There was when I thought chemo would never end and I know this too shall pass...Just wish it would hurry the hell up. We all know how lonely it is to live with these thoughts and just thank God for all of you being just a click away. It reminds me that I am truly not alone.
Thanks for letting me vent and I wish you all an smoother "process time" then I seem to be having...
ellen
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Denali, Congratulations on your last treatment. May your side effects be light this time - at least you will know this is the last time throught them.
NYMom, except for the 6th cycle, I always felt pretty good - almost normal - during the third week of the cycle. I went on business trips during the third week of several of my cycles. I was able to work all day including leading meetings, but I wasn't able to do evening meetings like I usually would. I needed a couple of hours more sleep than usual even during the third week.
I was getting Neupogen to bring my white cell counts up to normal so I wasn't terribly worried about low immunity. If you aren't getting that or Neulasta, then you might not want to be in crowds and you might need to be more careful about what foods you eat when eating out on a trip. Even with the Neupogen, I avoided salads because of that and because the greens tended to give me diarrhea.
I didn't have any trouble handling the air travel during chemo. But I was a real slug during the 6th cycle because of anemia and low magnesium (which I didn't find out about until the blood test at the end of that cycle). At the end of that cycle my legs were very weak. I went on a business trip and was on a small plane that didn't use the jetway. I didn't feel that I could safely carry my carry-on down the stairs to the tarmac so I asked the gate agent for help and she had one of the ground crew carry my suitcase. Even then it was a struggle to get up the stairs into the plane with the weight of my backpack/computer case. There were some short flights of stairs in the place we were meeting and using them all week helped get my strength back. On the return trip, I was much better but I still didn't feel that I could carry my suitcase up the stairs into the terminal. I told the flight attendent and she arranged for someone to meet me and escort me so that I didn't have to go up the stairs. There is help available at the airport if you need it.
Lisa, my chemo buddy, I'm sorry to hear that you are having such difficulty. It sounds like it might be the Tamoxifen. I've heard that the side effects from that can be particularly hard in the beginning and then may get better once your body adjusts to it. It's time to check with the doctor (or nurse, sometimes they are better with advice on side effects) to see what might be done to lessen the problems. I don't think you are being a baby. I know how you handled the chemo treatment and you aren't a complainer. If you are feeling this way, then there is a problem that needs to be addressed.
I'm glad I'm hormone negative so I don't have to make decisions about AIs. I've gotten through chemo and radiation and don't feel aged by it. But most on my rads thread are posting about how they still feel tired from it so I guess I'm blessed to have recovered quickly. My onc may want me to quit the bisponsphonate study because my creatinine levels are still elevated and the Clodronate I'm taking on the study is the likely culprit. I'm back to drinking extra water and have a blood test at the end of the week to see if that's gotten any better. But I've decided that I'm okay with quiting - I'm tired of taking two big Clodronate pills plus two big calcium pills every day. And that seems to be giving me diarrhea too. I'm pretty unlikely to have a recurrence having had chemo and Herceptin for stage I so it isn't that much benefit for me.
Gramma, Land's End and some other places sell shirts that have an SPF factor so that you don't have to apply sunscreen to your arms. You might try that and a sun hat. I hope you feel better soon.
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bdoaks: I never was ask to stop taking coq10 by my onc. She believes that it is not counter productive. Jeeze I hope she is right. I believe she is. I would specifically ask your onc her opinion.
Lisa: Man you get it out. I am the same as you. Fat, ugly, older, in pain, hot flashes, very very tired all the time, angry (at times). I am in Radiation everyday. I have to get a colonoscopy, my veracious veins fixed go to the dermatologist and I have fibroids that have to be addressed. I would like to do all this while I have paid the max for insurance this year. It sometimes just to much. I will not even go into work pressures. I have to remember to breathe. I am meditating and trying to find the beauty and joy in everyday I am blessed to be alive. Blah Blah Blah. Lisa you are so loved. xoxoxo! Be careful not to spiral.
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NY Mom, I sneaked in a mini-trip or two during chemo. The third week was the best time for me. The mini-break and the time spent away from BC as the focus of my life was such a pick me up. My advice is to just take it a bit easier if you need to on your vacay. Take your meds for se's should they occur. Most importantly, have a good time!
Ellen, thinking about you and hoping you are feeling better. It is a let down after treatment is over and you have a lot on your plate right now. I hope your Dad is doing well after surgery and that the burden of his care is shared by many. It must be very difficult for you, sometimes it seems that you can't win for losin' but things will get better. I am so glad we have each other to vent to, That's what we are here for. Smile and feel the love coming your way from all of us.
Gramma, hang in there sweetie. Those young kids don't have a clue how tough you are and what they could learn from a remarkable person like youself!
maja0
