Taxotere, Carboplatin and Herceptin
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Aly:
I had headaches during my bad days after treatments. The first couple times they lasted for days, and I thought I was going to die! I just couldn't function at all. The headaches were much worse than the nausea. So after my second treatment, my husband went out and bought some Head On Migraine formula. You know that stuff with the obnoxious ads on TV? IT ACTUALLY WORKS!!!! You just rub it on the area of your head that hurts and you'll notice a difference within minutes. It even works on sinus headaches. I just wouldn't get it in my eyes. It gives kind of an icy-hot feeling. Try it and let me know if it works for you.
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Aly:
I had headaches during my bad days after treatments. The first couple times they lasted for days, and I thought I was going to die! I just couldn't function at all. The headaches were much worse than the nausea. So after my second treatment, my husband went out and bought some Head On Migraine formula. You know that stuff with the obnoxious ads on TV? IT ACTUALLY WORKS!!!! You just rub it on the area of your head that hurts and you'll notice a difference within minutes. It even works on sinus headaches. I just wouldn't get it in my eyes. It gives kind of an icy-hot feeling. Try it and let me know if it works for you.
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Thanks Shelby, I'll try it!!!
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Oh, and for those of you looking for a way to get fluids down when everything tastes awful I wanted to tell you that I recently discovered Special K protein water. I bought the lemon flavour and it's wonderful. It's not too sweet which was good for me since that sickly sweet horrible taste in my mouth was always made worse by sweet foods/drinks. It has 5 grams of protein which is helpful when you're probably not eating enough, and it has some B vitamins which are helpful as well. It only has 50 calories in a 16oz bottle, not that you should be worried about calories when you're just trying to get *something* down, but there it is. I don't know what the other flavours are like, but the lemon twist flavour was a godsend for me this time. I have a bottle in front of me now because my taste buds are still dead 10 days out from my final chemo.
)Aly.
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Hi Aly,
What's the follow-up MRI looking for? Please try to remember that you are going to be fine and nothing bad is happening -- things are only getting better.....I'm off to MUGA scan this afternoon.
Let us know what's worrying you. Peace and hugs, Bethany
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Hi Bethany. When I had my first MRI when I was diagnosed, it identified a secondary "questionable" spot that later (after a biopsy) turned out to be benign fibro-fatty tissue. I guess they just want to follow up on that and make sure nothing's changed, as well as maybe making sure there's nothing else they missed? I'm not 100% certain except when I had the original MRI I was told I should get a follow up in 6 months and so that's what I'm doing. Honestly what's worrying me is that they'll spot something else. I think it's unlikely, but it still worries me. Worries me a LOT.
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Aly, I will keep you in my prayers for Friday. I hope that they will give you the results that day and not make you wait all weekend. ~Bethany
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I hope so too but my bet is that it won't be until Monday. We'll see I guess!!
) Thanks very much for the prayers, they are *much* appreciated!Aly.
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klfh: If nobody on this thread has done neo-adjuvant treatment, you can search the site or use your question to begin a new thread. Lots of women here will be able to help you out, but I'm not sure anyone here has done this. I think most of us had surgery before treatment.
Aly, hope the headache goes away soon. Oh man, "scanxiety" - I hate that. I can't have an MRI until the expander is out, but I do go to see my BS tomorrow to check out my remaining breast before the PS lifts it next week. (Do you think breast surgeons realize we refer to them as "BS" on this site?)
Shel, the riverboat gamblers metaphor cracked me up! I'd use it to teach metaphors to my 10th graders, but I can just imagine the completely incomprehensive (is that a word?) looks on their faces.
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Scanxiety!! I love that!! Perfect! I'm going to remember that one because it made me laugh and I needed it today. Thanks Sue!
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I'm sure I stole it from someone else on this site, but glad I could bring a smile to you.
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We can start a Camp Chemo Glossary:
* The Neunasty shot
* Scanxiety
* Sewer mouth
* Weaker than a popcorn poot
*I know there have been lots of other funny ones....Shel? Brenda? Carolyn? JoAnne? Henson Chi? Maggie? Sue?
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Kifh I am on Chemo first and then the surgery. Mine shrank right away , but I am frustrated in that it is a shot in the dark cause until they actually do the surgery they won't know. My onc wanted to shrink it before the surgery to make sure they got it all. I keep feeling and thinking that too. Seems like I can still feel it. Where is yours? They can't find my tumor, my Lymph Nodes is what is swollen under my arm.
Anyone have severe sweats about the 8th day? I sure do, sort of like when you have the flu and you sweat all the poison out. After that happens I seem to be fine. Like the turning point from the Chemo. That MUGA test on Monday while still under the big TCH and weak was a lot then the next week of Herceptin just brought me down to the bottom. Tomorrow is day 10 and I am just feeling better. I am making sure there is no test or appointments on my down days anymore. I am marking my calendar as clear days for 10 days after the big three.
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Bethany:
Another item for the Camp Chemo glossary:
poisoning = chemo treatment (poisoner = colloq. for oncologist, one who administers or orders the poisoning)
foob = contraction for fake boob (derivative, "floob" = foob made of flubber--see Disney movies, circa 1965)
Build-a-Boob Workshop = (1) plastic surgeon's office (2) surgical center where one has surgery to get foobs
The Trinity (I'm coining this one right now) = taxotere, carboplatin, herceptin
Speaking of hooters...you all will appreciate this. So I went to my final meeting of my series of acrylics classes last night, and we had a live model posing nude from the waist up. Of course, she had a rack on her comparable only to a plate of ribs I ate once in 1991 in Jackson, Wyoming. I felt like a eunuch in a freaking sausage factory! I did a whopping good painting, though, if I do say so myself. I may actually post a photo of it as my avatar. As in "If the Foobmeister could make me look THIS good, it would almost be worth it!"
Brenda;
I don't know where you're at in California, but it was hellaciously hot here in San Diego today. You had to get right on the beach to get out of the blast furnace. Maybe THAT'S why you were sweating!
Sue;
I agree. I wouldn't waste the riverboat gambler thing on a lesson on analogies. I would save it for a lesson on the controlling metaphor and have them write an entire story from the POV of a cancer cell. (What was that awful movie from the seventies with Raquel Welch floating down the bloodstream with a couple of guys?)
Good night all!
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Hello everyone,
As I try to recover from tx# 5, I am cranking up for tx#6 on Oct.20. The additional saline solution two days later did help -- some. It was the difference from being extremely miserable to being very miserable. However, it was a better experience and I am very grateful for this information from the list.
First, I will line up the medical staff to make sure I receive additional saline 1-2 days after tx#6. Somehow, at the famous MGH, they don't seem to know about this strategy. By the way, I always tell them how difficult the "SEs" are because they don't seem to acknowledge them very much. I keep hearing about how some patients "just sail through" TCH. Or worse yet, "everyone is different." Yes, there are a variety of responses but some important commonalities.
Second, I may need another infusion of red blood cells if my count goes below 10 and I feel terrible. Before they gave me the transfusion with the chemo and I had my worse after treatment side effects day 4-10. But after that I felt so much better because I did not have anemia.
Consequently I will not agree to having a transfusion with chemo. I am not sure whether I should have it after chemo or before. Or perhaps I will just wait until my red blood cells recover. I will start discussing this issue with the infusion nurse, oncologist, and nurse practitioner in the next few days. I want them to start thinking about it now. And if I don't bring it up they won't think of it.
Do I sound bitter? They do have a very sophisticated staff but I don't think they (or perhaps any medical practice) works enough on controlling "side effects." Perhaps because the emphasis (as it should be) is on finding new and better treatments.
Before I started chemo, I wondered how I was going to spend my time when not sleeping or suffering. I found most of it is taken up with being an advocate for myself. Thanks to our list I have been greatly helped in this project.
I am not sure I want to celebrate after tx#6 or even two weeks later when I feel better. I don't think I will be in a celebratory mood -- just relieved. My 10-year old daughter tells me that I owe her 5 trips. Perhaps before radiation starts, we could go somewhere.
Any ideas? How do people intend to mark the end of chemo (or how did you do it)? There is a certain irony in the process -- as you get closer to finishing the treatment (or at least phase I), the worse you feel.
Thanks for listening to all my complaints. Right now, it is hard to be upbeat.
Jo Anne
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Aly, I get headaches but not migraines anymore. I had a tooth root taken out a few years ago and it was not infected or anything I just had a bad cap on it so we decided to to do an implant. I was getting migraines all the time before that and have not had one since the incision healed up. I told the surgeon that he cured my migraines too and he was so excited because he had be trying to tell people this for a while. I don't consider the headaches I get with the chemo migraines but I do try to drink more water. I don't know if it is the Taxo or the Carbo that does it but I know when they start giving the Carbo my chest bothers me and my throat feels funny. the onc told me yesterday I am just one of those people that reacts different to carboplatin and he thinks it is because of the fibromyalgia. I am done with the #5 and waiting on se. I go for the Neulasta today and taking my friend for her #5 tx and someone will pick her up and bring her home so I only have to wait until she sees the doc to make sure she gets to take it. she is on all different meds than I am since she has non hodgkins lymph.
Brenda I always have a hard time the first Herceptin after the TCH. I am usually still weak after the BIG ONE. It was full in there yesterday. I had made the mention I see more women in there to my husband several times and yesterday there were as many men in there as women. he noticed to but I was the one who had to bring it up. He was trying to nap since I was awake a lot the night before, he was tired. I was dreading this one and I will be so glad to get the next one over with.
I hope all is well with everyone else.I have a new little lump right in the incision area and I am going to have a mammogram before I start radiation. the onc said he is sure they are scar tissue but to put my mind at ease we will do it.I don't really worry about it but I do mention it every time so maybe he thinks I am worried. I just take one day at a time and see what happens. My RBC was down just a tiny bit and so we are waiting on the blood transfusion I guess until next week. I have to wait 4 weeks until my next BIG ONE since the doc will be out of town.I was hoping we could get this over with but then I will be able to be at the coat giveaway but I will only help my daughter with food for the workers. My husband told me I would not be around all those people and they might have colds or something. We are going to get out flu shot this next week. Okayed by onc. yesterday. have any of you gotten your flu shot yet?
Carolyn
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Jo Anne;
I finished up with my fourth of four August 7. I did not feel celebratory then either. Many patients, I have heard, feel more anxious as the end approaches, worrying about recurrences and "what comes next". I really don't want to plant all this in your brain, but I'm just telling you this to say that it's normal to feel this way for awhile. During treatments, I was seeing a counselor who works in the hospital with cancer patients, and she sees that quite often. Also, don't forget that just because you're done with chemo, it's not quite done with you. You might find that some of your SE's hang on for awhile. For me, it's been the eye tearing and itching, nose snotting, and leg edema. The only thing I really have left is the edema--I'm still on Lasix and I still have to elevate my legs in the afternoon. My red and white counts are right back where they should be though, and I'm feeling stronger every day. So I guess what I'm saying is that it's a process. And the oncologists pretty much ignore the mental health aspects of it, which drives me nuts! They just chase the tumor and seem not to care about the rest of you. So feel free to rant here. And remember, your lack of celebratory exuberance is normal.
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Carolyn, can you tell me more about your chest bothering you and your throat feeling funny? I have such a similar thing going on and I've neve heard about it from anyone else before! I feel like someone is pushing into that pit at the base of my throat, like my throat is closing up except that it's not. My chest feels a little bit heavier, like I'm aware of the effort of breathing. Not shortness of breath, just a strange feeling. It's weird though because it happens like a week after treatment, not during.
Hey Shel, I think I like "Lord High Poisoner" for the oncologist. Sounds so dramatic!
)Jo Anne, after my final chemo my husband and I walked over to the hospital gift shop and he bought me a wonderful soft teddy bear with the breast cancer logo on it. Part of the proceeds are donated to research so not only did I get a warm fuzzy, but we got to help a cause that is very personal. That felt pretty good, although not celebratory since I still had more than a week of being sick to deal with before I could think about being "past" the last of the ugly stuff. I think we may take a little overnight "break" between now and when radiation starts. Just get away from everything and maybe do some antiqueing or something. That will feel good I think.
I still have a headache. Worse today in the front and my eyes feel like they want to close. I'm thinking maybe it's a sinus infection again (sigh). Off to the ENT tomorrow afternoon after my MRI and Radiologist appointments. I should just rent a room at the hospital I'm there so much!
)Aly.
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Aly,
Is there any possibility that you are anemic? It causes breathing problems. Perhaps you should ask for a blood test to check it out. It could happen after treatment as red blood cells die and are not replaced.
Jo Anne
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Hi Jo Anne. They've checked me for all of that and I'm not anemic. I'm glad, but wish there was an explanation for this awful feeling!
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Hi ladies;
I am starting TC possible H on Oct, 30th. The oncologist told me there would be little nausea and vomiting nothing like the other chemo treatments I had. Reading the discussion boards it just does not sound that way to me. I am not looking forward to chemo again was upset when I got the news. I had surgery last Monday. A radical double mastecomy. They removed a 12.5cm tumor. They took out my lymph nodes 14 on the left 3 positive and 2 on the other side with SNB. I had DCIS on my right breast and there is no more cancer. My left breast is another story. I have IBC. My doctor says we will cure this. I am not sure that sounds to good to me. Sounds almost uncertain. IBC is serious stuff. Aly glad your not anemic. I was and had to have a blood transfusion. I felt so good after that. It was amazing. I hope they figure out what is wrong.
Blessing Elizabeth
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Hey Elizabeth;
Welcome to this thread. My prayers will be with you. But seriously, why are they going to give you Herceptin if you're HER2 negative? Herceptin is a targeted therapy for the HER2 protein. My understanding is that is specifically what it's good for. You might want to clarify that. I don't know what other chemos you've had...you didn't say, is this a recurrence? But on taxotere and carboplatin, you will definitely have some side effects...and I won't give you the whole litany (most are due to the taxotere)...but if you read this thread, you'll get a feel for what they are. The bad days for most women are days 4-9 after treatment. Oncologists tend to put the damper pedal on it, making you think it's a piece of cake. Stick with us. We'll tell you the dirty low down. But I'm still curious about why they would put somebody HER2 neg. on Herceptin. Off-label use, perhaps?
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Thanks Aly and Shel for your thoughtful responses. I guess few people feel celebratory at the end of chemo -- just glad to have made it through. I have plenty of more treatment -- radiation and Als so I have much to think about. And tx#6.
Has anyone here had a treatment despite having low red blood cells? The infusion nurse told me that it was "normal" for chemo patients to be anemic but I noticed some of you had to wait until your blood tests were normal before treatment. I know this was true 5 years ago when two of my friends with BC had chemo.
Jo Anne
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Hi Jo Anne,
I did receive my tx's with low red count they lowered the carboplatin. I did have to have the shot for the low red blood counts felt much better afterwards. I had my last tx 6-17 almost back to normal I had the expander removed and implant put in 2 weeks ago that was a piece of cake so glad to get rid of that expander. Not sure what I am going to do about the nipple reconstruction I think I may just go for the tatoo any thoughts on this I am 54 not wanting anymore surgeries. Take care ladies have a great week end.
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Aly Marie, I am so excited that you are finished with chemo- you had a rough go of it so CONGRATULATIONS!
Im doing #18 out of 33 rads today- officially into the second half of radiation with oophorectomy to go in November (probably with hysterectomy) and then some hormonal treatment.
Im going away for the weekend to Arkansas to see my college girl and enjoy the pretty area- my birthday is Monday (Columbus Day this year) but Im starting the celebration today!
Kristy
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Aly, I am not sure why you have that feeling after the tx but mine happens just as they are putting it in. After the TCH I feel okay but tired. I go home and sleep. do they give you Benadryal when you take your tx? I take it then and I take it every night to try to get some sleep and have for years since this is the only sleep med I can tolerate along with my Xanax. It helps. Maybe you are having a delayed se if you are not getting the Benadryal. Ask your onc or his nurse.
Welcome Ebann, I am sorry you have to go through this again. I will say the side effects are different for everyone.I can't tolerate the Carboplatin like some can and the onc said it was because of my fibromyalgia and arthritis. He said apparently it causes me to react different to meds than most. I hope you do well with all of it. I can do the Herceptin okay except the first one after the big TCH I am still a little sick. I seem to feel better after that and I think it is because I get a little extra IV fluid.I still have one BIG ONE to go. #6 and as for celebrating I am going to be grateful but I just want to get this done. I am dreading radiation. Have you had radiation yet?
Jo Anne, I do get my treatment with low RBC but not with low WBC. I guess really depending on how low. I am low on red and they never set me up with the transfusion so I am not sure if they are waiting to see how it goes after the Herceptin this next time. I can not have the shot for RBC anymore because the FDA has a new rule. It can cause heart problems they say.I had 2 of them before this rulling came down so I did have 1 blood transfusion.I am really not looking forward to another one. I got mine the day after the treatment. Where I go you have to be admitted to the hospital to get the blood transfusion so that would be a long day if I did both the same day. also my blood pressure went up a lot when we did the 2 units and they kept monitoring the blood pressure. I finally talked them into raising my head up and that helped and I ate a few crackers since I was hungry and that helped the blood pressure some too but I never want to eat that food there again and just to smell it makes me sick. I guess a lot was mental.
I am tired today. I just thought I would see how everyone is doing so I think I will go lay down a little now. I had to get my checkbook in order too.Pay some bills! At least my insurance is paying all of my hosp. bills now. thank goodness for insurance.
Have fun Kristy! I would like to run down to see my grandson but he will probably come home. I am not sure if the colors are getting nice down there yet or not. He goes to school in Durant OK. I don't think we have had enough cool weather yet though.
Carolyn
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Kristy -- 1/2 way through the radiation!!! -- wish you didn't have so many steps involved in this. You sound very strong. Happy Birthday.
Wanted to share that my 1st MUGA since starting Herceptin actually went up 4 percentage points! I'm pretty happy about that -- and relieved.
And, the problems I had after #2 with liver enzymes has continued to improve -- a little high this time, but not enough to stop #6 on Monday.
Happy weekend all ~Bethany
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Aly,
I was just thinking of something that I wonder if you've considered. Maybe your throat/chest pain is heartburn. I've had to take Prilosec (2x the OTC dose) every morning and evening to prevent the symptoms that are similar to what you are describing. I forgot to take it this morning and after going out to dinner I felt pressure -- besides the gas.
All,
Does anyone else feel or have you felt like you have a bubble the size of a basketball in your tummy that wants to explode in either direction? Wonder what to call that in our camp chemo glossary?: a 2-pointer?
(()) Bethany
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Hi all.
Elizabeth, welcome to the thread. Sorry that you have to be here but I hope we can be of some support for you while you're going through all of this. You have my prayers!!
Kristy, thanks for the congrats! I am SOOOOOOO glad to have that part behind me I can't even put words to it. Now I just have to get through the radiation which starts on the 20th.
Hi Bethany. Nope, it's not heartburn. I'm on Protonix twice a day and haven't had even a blip of heartburn since. It's actually not pain, but a pressure at the base of my throat that makes it feel almost like my throat is closing up. One of the nurses at the chemo suite said she gets the same thing and it's allergies, but I don't know for sure. It certainly is annoying, if nothing else.
So I had my follow up MRI today and it came back completely clear! Yaaaay!!! Great news. No sign of a sinus infection after a CT scan at the ear/nose/throat doctor either. I stopped down at my Onc's office to tell her assistant that I still had the headache but no sinus infection so that she could pass the info. along to the doc. Bless the woman, when she heard I was in the waiting room she saw me without an appointment and got me in for a head/brain CT scan (and tested me again for anemia) even though it was nearly 5PM already. That came back clear as well (thank God!!!) so I guess what I have is just a plain old migraine (ugh). Hopefully it will get better soon as I'm starting to get crabby with it. Well, crabbier than usual, that is (lol!).
)Anyway, I've been at the hospital since 10AM and we only got home at about 6:30 so I'm gonna hit the sofa for some quality TV time before bed. Hope you all have wonderful weekends!!
Love and hugs all around,
Alyson
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Hi everyone and thank you for the welcome.
Shelbaroni: My doctor has requested HER from my surgery. The rest are neg. Last time it was tested they said I was neg. She just wants to double check. She would like to use it on me if possible. Thank you for asking. I so appreciate the support.
Carolyn: I will be doing radiation at the same time. I am fine with the radiation. I just pray I do not get burned. It is hard to imagine that they are burning the cancer away along with the rest. But if works and it helps us to survive then I am for it.
Aly: Thank you for your support and especially for your prayers.
I wish everyone the best in your treatment. I am glad they came up with this thread. Nice to feel welcome.
Blessings; Elizabeth
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