Taxotere, Carboplatin and Herceptin
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Hi guys,
I found a blog today that was from the May 08 Chemo threads. It is an excerpt from a lady named Eddie, who gave me permission to copy and paste over here. I really wanted everyone to read it;
One more observation then I will let you all go....for those who are still reading ... Remember when you were preganant (for those who were...and for those who were not, stay with me for a minute) when because your condition was so public, perfect strangers would come up to you and tell you their birth stories (while patting your belly? Oy!) ... but remember how so many shared their horror stories? You thought, hey....keep it to yourself. But they didn't. Now, those of us who are parading around bald or hatted with our baldness showing....we, too, are very, very public cancer patients. (I never know to say cancer survivor, cancer victim....I hate that one) but cancer somethings....right? Okay, so, I am in the airport line with our 15-year-old today...he left for LA for six weeks -- bye bye, I will miss him, but that's another conversation . . . so we are in the line and a woman looks at me and says, "It'll grow back honey. I had cancer in 1989 and look at my hair now (and she had lovely hair). And a woman RIGHT behind her said, "Me too." I am here nineteen years later -- don't sweat the hair...it's nice to see you bald. We laughed at my LOPSIDED self as that is the LAST thing on my mind right now and I was wearing a tank top and it suddenly dawned on me that this is OPPOSITE the pregnant deal ---- the survivors are surviving and living and traveling through slow airport lines and telling me how long they've been around after. The sadder stories . . . the ones who died . . . they are, sadly, gone. They are not standing in an airport line to say, "I didn't make it." or... "That chemo wasn't worth it." They are gone, but we do not have to deal with their stories as the success stories are STANDING their sharing. Women....buck up. We are going to get through this and we are going to do it with flying colors as some of us already have. We will whine and cry and be sick and we will feel so sorry for ourselves and we are alllowed to do that and we will share that crappy stuff like every time I go to the bathroom now for a BM, I bleed and I HATE that, but we will get through and we will survive because in our long lives, this is a short time. And that will be us in 19 and 29 years telling someone, "Don't sweat the hair, honey. You'll get through." WE WILL GET THROUGH. I have FIVE more of these rounds, but after Thursday I will be HALFWAY. Each of us will encourage one another as we have done so far and we will all get through ---stupid ports intact, cotton mouth, feeling like we have been run over, but we will get through.
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I am going for my second treatment tomorrow. I have to say, the first one left me thinking chemo shmemo. Really not bad. Hopefully the rest will be as easy. I have a question-my HMO onc did the bloodwork and only requested liver and kidney functions. I was shocked that she didn't do white or red blood counts. I'm wondering what others are getting? I am switching to PPO fro the next treatment and will be interested to see what tests the will do. I tire easily is my main complaint and my surgery site is getting more sore-like it is unhealing. i figure the chemo is killing THOSE fast growing cells too.
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Aly...according to my nutritionist, we'd BETTER take probiotics while on chemo. That's all I'm going to say for right now. I am so wiped out I can hardly type. good night.
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Magentagirl: I had a CBC done before every treatment. I'd have a blood draw then would be given saline while they ran the tests in-house. If the counts came back OK, they started the pre-chemo drugs. My counts were low at times but still high enough to get chemo. If they were too low they would have delayed my treatment.
My onc ordered a chem panel (kidney and liver amongst other things) every couple three months. They had to send that bloodwork out so I didn't get those results until a few days to a week after my treatment.
Good luck with your second treatment.
Terri.
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Aly, I was told NOT to eat ANY yogurt during chemo - don't really get it, but that's what the onco said. Also, I take Zofran with Ativan daily and the combination works for my nausea. Each drug by itself doesn't work so well. Are you feeling any better???
Cupcake - I got sick beginning day 2 and it gradually got worse through day 5, then it started improving after I got IV fluids. I continue to feel sick every day, but am taking Zofran and Ativan every day and it works to combat the nausea. Now I have to battle my insurance company to make sure I can get the Zofran I need.
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Terri, thanks for the info. Maybe they will do it this morning right before. I am seeing the doctor so I will ask her what gives. I went yesterday for the liver/kidney test-maybe that takes more time to process? Thanks for answering-very helpful.
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Thanks CaseyDoddle for answering that for me. Kina gives me a time line. I had a visit from a friend yesterday, that had went through it all recently ,and told me to record the first and second treatment to give me that time line that will be what I will have, as everyone is different, and I will begin to see a pattern. Once I do then I will kina plan my time around it from treatments on going from there. Like if day 5 is the worst and day 8 is better then when I am at day 5 and feeling ruff I can know day 8 I will be out of it. You probably were sick because of dehydrating too, I have to watch that cause I can also go quickly. Going at both ends causes it fast on me. I am stocking up on the meds for home and stocking up on the Spiritual meds too to rely on through it.
Our blood has to be drawn 48/24 hours before Chemo. No blood work no Chemo.
Sorry your so tired Shell, hope today is better for you.
Lynn still waiting to hear from you. I have you on my heart daily. Since your first treatment no one has heard from you, and I'm thinking maybe your not feeling so great. Hope you feel well enough to post soon. If someone reads this sight for you please let her know I am thinking about her.
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OK ladies; this post is for all of you that read other people's posts when they feel good and then you feel bad because you're having a bad day. If you feel bad, READ THIS:I feel like @#$%&*@! Just like I did on day 5 after the last treatment. Same extreme sinus headache, like someone's inside my skull trying to pry it open, and totally unresponsive to the wimpy Nasonex that the doctor ordered for me. And the nausea. Woke up this morning and took a Bonine, ran to the bathroom and threw it up. I'm trying to keep the second one down now. Really want to be up and moving by the time the kids are out of daycamp today. My husband gets stressed out when he has to do everything, yells at everyone, and then I have to lie here and listen to it.Aly, I don't know what to say about the probiotics. I think it might be one of those controversial areas, so you'd better go with what your doctor says. I think I'd better ask mine, because we might have a disagreement with the nutritionist.0
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Aly: I took probiotics all through my chemo. I can't imagine that they would interfere with the chemo - I mean, if it was stronger than chemo, wouldn't we be using it to treat the cancer? I was not told to not take them and I was never told to avoid yoghurt. Maybe Casey can ask her onc why she was told that - I think it would be interesting to hear the reasoning.
I took Ativan (Damn-it-alls as we call it!) twice - both times were related to themassive clumps of hair that came off my head after a shower. So, for me, it was a sedative, but when I had my adverse reaction to compazine, the onc had mentioned that Ativan could be used if Zolfran didn't help.
Shel: I am so bummed to hear that you are nauseous. What are they giving you pre-treatment? Do you know what they have you take before you go in? What is in your pre-treatment cocktail? What do they have you do after the treatment? The key to this whole nausea thing is to make sure it never starts. Once it starts, it is very difficult to control. Like I need to tell anyone here about that!
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Aly: I just hauled out my "patient - family guide to chemotherapy" that the nurses at my cancer center put together. I was never told to avoid yogurt. In fact, under the "diarrhea" section it says "eat foods that are low in fiber but high in other nutriends such as: Yougurt with live cultures...."
Around treatment #4, I didn't have my daily yogurt for a couple of days and got oral thrush. I was tested for strep but it was around xmas and it took forever for the results. The anti-biotics I got just in case worked at first, but then the spots came back so I self-diagnosed as oral thrush. I made sure I had yogurt every day, the spots went away and I never got the thrush again.
I did avoid anti-oxidants during chemo and radiation. I wanted to let the nasty stuff do all it's work.
Shel: I hope you are talking to your doctor about the nausea. Do you get Aloxi pre-treatment? That is what I got. But if you aren't getting really six until day 5, then your pre-treatment med are probably working and it's when they wear off that you have a problem. Have you gotten a presciption for Kytril? Maybe that is something to try as well. I'm sorry that you are feeling like crap.
Terri.
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You know I think you all are probably right. I've been doing some reading on the web and it talks about eating yoghurt and taking probiotics. I did hear about not doing antioxidants. I do have a call in to my doctor just to make sure though. I need to get something going in my digestive tract, it's STILL not right and I'm STILL having nausea and I shouldn't be. It's amazing how much the Ativan helps though. I never thought to take it for nausea. DUH!
)Shel! Oh you poor thing! I'm so sorry to hear you are ill again. I hope this one passes quickly. I'll keep praying for you!! I hope that you are taking your nausea meds on a regular schedule and not just when you start to feel sick. It's like Nan said, you have to nip it in the bud before it starts because once it gets going from my experience you might as well just head to the hospital and have 'em hook you up to the I/V to get it stopped. My husband is a flippin' nazi about making me take my meds. He's a worse nag than my mother!
)I'm supposed to have chemo on Thursday but am a bit concerned about going into a long weekend without anybody being there to give me fluids, etc. like I've needed the last two times. I'm going to ask my Onc about pushing it to Monday and about whether I can just go ahead and plan to come in every couple of days for fluids because I'm sure I'm dehydrating and that's not helping but I just can NOT get the water down when my stomach goes kerblooey.
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Well, I'm actually sitting up in bed talking with my girlfriends. Believe it or not, what is helping with the headache is that goofy otc homeopathic migraine stuff, Head-On that ya just rub on yr head. We slathered it all around the line of my maxillary and frontal sinuses, and it's not total relief, but keeping me from banging my head on the wall and moaning.About the nausea. The Bonine isn't quite cutting it, so I'm going to pop a compazine.I talked to the onco nurse, who was relaying stuff back and forth from the doctor. They have now reached the conclusion that Nan and I have, that the culprit is the anti-nausea stuff they're giving me in the treatment room during the infusion. So they're going to change that out. Also, the doctor called in some prescription to my pharmacy that should help with both the headache and the nausea (probably by just knocking me on my tuchis!)I also got the low down on how my doc feels about probiotics and yogurt. He doesn't have problems with ANY food, and he doesn't have a problem with probiotics. And yes, opportunistic yeast infections can happen with chemo, just like any infections, and keeping a good supply of intestinal flora is one of your main ways of maintaining a healthy immune system. Last round, I did a probiotic that you had to mix with water and was so powerful that it was for people with ulcerative colitis. It normalled out my bowels really quickly. But I ran out...I'll have to get some more from my osteopath. But any way you can get 'em, probiotics are good.Thanks everyone for your concern. And Aly....yeah, if I were you, I wouldn't have a treatment if you're going to be by yourself. Because when you do go south, you tend to go to the penguins, if you know what I mean.0
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I plan on seeing my onco in the morning (I guess it is actually this morning) prior to getting chemo and will ask her about the yogurt and probiotics in particular. Although, I specifically asked her PA about it and was told to stay away. I don't know what the deal is...
Aly, I agree with you about waiting. I'm concerned about getting them today and being without support through the long weekend. I'm going to try to make alternate plans to get fluids on Thursday and then Sunday at the hospital. Hopefully, it will work.
Shel, I sure hope you are feeling better soon. I so admire you women that are experiencing the chemo sickness and have children at home to care for. I know it takes a lot to feel like *&^% and take it on the chin to get up and care for your children. You guys really ROCK!!!
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I am excited to report that the Empress has once again risen from the smouldering heap of ashes, triumphant over the toxic treachery of Taxotere. (How's THAT for alliteration?) My husband is a genius! That Head On stuff not only cured my headache, but it took away the nausea. By evening, I was snarfing rice crackers and garlic hummus. And I know people who aren't chemo-sick that can't eat garlic hummus! Meanwhile, the doc wrote me for some barbiturate stuff that I didn't have to take. So I'm up and doing stuff--not quite ready to go to the gym this morning--but certainly ready to take a long walk and get a little writing done. My daughter thinks I should send in a personal testimonial to the Head On company. Who knows--I might!Kay--the thing with my kids is all about being proactive. While I was feeling strong right before my last treatment, I signed them up for so many day camps that their little heads are going to be spinning. They don't have time to lay around and fight and whine about being bored. The only challenge is going to be getting help with the driving if and when I go south next time. I'll probably get help from my 19 year old daughter. It helps to have kids all over the age spectrum!Well, ladies. It's time to take on the day.0
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I'm back!! Thanks everyone for the kind thoughts and prayers. I was pretty out of it for the past several days. I didn't even get online one time. I had my first treatment Thursday. Friday I felt pretty crappy. Saturday (Day 3) was the worst. Nausea and vomiting all day. Day 4 and 5 were gradually better, and today (Day 6) was pretty good. I've been up all day, even exercised this morning. I'm just a little tired. But I'll probably sleep better tonight since I've been up and active.
So, I haven't felt great. But, I have to say overall it hasn't been that bad. Even the one day of severe vomiting was nothing compared to how I sick I was during my pregnancies. It's just been crazy around here. Luckily, my mother was here all weekend to help with the kids. Shel, I know what you mean about day camps. My 4 year old is going to be so over-scheduled for the next two months, she won't know whether she's coming or going. We've also hired a babysitter to come by a few days a week to help with the baby. I don't want to be alone and find out I can't take care of her.
I've had a touch of diarrhea, which I'm hoping won't get worse. In fact, I hope I am through the worst of all the se's.
Cupcake (Brenda?), thanks for all of your kind thoughts. I had no idea that your diagnosis was so complicated and unresolved. That must be very difficult. I hope they get it all ironed out soon, and that it is the best possible prognosis.
I love this site and all of the support.
Best to everyone,
Lynn
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Lynn...looks like we're on the same schedule, except I'm one treatment ahead. It's so weird how it affects people differently. I don't even get sick at all UNTIL day 5, and that's when most people are on the upswing. I don't get diarrhea, either. Instead, my bowels go into freeze mode, despite all my chemical concoctions to unlock them, until they choose to deliver the goods.I had a good day...hoping you all did, too. Actually banged out about 1100 words on my rewrite today, a semi-romantic scene no less. So I guess I'm out of the surrealistic swamp fog I was in yesterday.0
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Oh Lynn I am so happy to hear from you.
I just knew you were down. The day of treatment you did well and then you fell off the radar. I am glad you are coming out of it. I start on Tuesday so will know what to expect on what day somewhat cause you are a week ahead of me. I had an MRI done today and they blew another vein. She said , "you really need to ask for a port cause you had very bad veins". I said, "yep got it on schedule for tomorrow". (again I had to push for it) I know I am going to be unpopular, but I have ask for another opinion. All the research I have been doing just points to an "occult primary" instead of a CUP. I mean that is the difference between night and day. I know I am NOT a Dr, but neither is the Pathologist that gave the early dx. They have based my treatment without all the information. Especially saying I had earlier cancer which I did not. The cells were not not cancer, but just abnormal. I think after this MRI (that I had to ask and push for) they are going to find the tumor. According to the National Cancer Institute this should have been one of the first test, not wait until you start Chemo. They have done nothing but a needle biopsy and found some cancer cells. Both scans now show no cancer anywhere else in my body, but the breast, and they didn't know that either before setting up the Chemo. I am not denying I have cancer, I know I do, but possibly they don't need an over kill of the Chemo either. How can they mix up a batch of chemo without staging the tumor. The lady today said they got good images on the MRI, and although I am sure she was suppose to tell me, cause she is not a dr to read the results, it was my impression the tumor is on the results. I will know in a few days. Their target is to do Chemo to shrink the tumor, I think to save the breast, but again I have been reading the recurrence from HER2+++ as being high and the abnormal cells were found before I already came to the conclusion to have the breast removed. No one ask what my thoughts were, but they need to know. One question is if they are going to take it why not now and then Chemo. The sentinel Lymph Node has not been tested as any nodes outside of the lump. Again why not. I have picked a Dr. that everyone says is grouchy, and no one likes him, but I don't care about his bedside manner, I just care he is the best there so I want his opinion. I am my own health advocate in this and beings it is my body I feel I have a right to have a part in the treatment. How do you guys feel? Do you think I am over the top? 0 -
Cupcake I don't think you're "over the top", I think you're doing the right things to make sure you get the care you need. I can't believe you're having to demand everything that should just be a given with diagnosing cancer! From the way you tell the story I can't say I feel all that happy and comfortable with how they are treating you. It almost sounds like the Keystone Cops or something. Where are you being treated? Do you have a cancer center in your area or another hospital you could check out that might do better by you?
Recurrence from HER2 was high in the past. Then we got Herceptin and (as my Onc put it) it "leveled the playing field" with non HER2 cancers as far as treatability and reducing recurrence. You should be getting Herceptin as part of your treatment.
I just looked some things up. Here are some major cancer centers in California. Maybe one of them is near you?
Cedars-Sinai Comprehensive Cancer Center, Los Angeles
The Burnham Institute, formerly the La Jolla Cancer Research Foundation, La Jolla
Jonsson Comprehensive Cancer Center, Los Angeles
Stanford University Hospital, Stanford
University of California, Davis Medical Center, Sacramento
University of California, Irvine College, Irvine
UCLA Medical Center, Los Angeles
University of California, San Francisco Medical Center
University of Southern California Norris Comprehensive Cancer Center
Stanford and UCLA are top 10 rated major cancer care centers in the US.
Dx 3/12/2008, IDC, 2cm, Grade 3, 0/3 nodes, ER+/PR+, HER2+0 -
Cupcake, I don't think you are over the top AT ALL!! If a doctor is not listening to you or giving you all the information they have they are simply not doing their job. I am glad you are going for a second opinion. I believe it will ease your mind and put you on a track to truly know that you are doing the right thing, whatever treatment you choose. Good luck.
Had my second treatment today. Onco changed up the meds a bit - started with Emend for nausea. She believes this will make the difference. If not she will call in Marinol (a marijuana derivitave) to see if that works. I suppose I'll know in a couple of days. I have to go back tomorrow (2 hour drive - one way) for my Neulasta shot and had the Procrit today. I am hoping and praying for an easier time. Onco assured me it would be, so here's hoping.
Also got the low down on yogurt - since I had an autoimmune disease (MS) prior to getting cancer and because it affected my bladder and bowel, they are not recommending yogurt FOR ME! Not for everyone. Sorry for the confusion, I suppose I didn't listen well.
Glad you are feeling better Shel. I am going to send hubby out for HEAD-ON if nausea or headache shows up this go-round. Maybe I'll get some help too.
Aly, what did you decide about Chemo this week - waiting until Monday? Are you feeling any better?
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Cupcake,
My tumor was hard to find also. I had a first had a biopsy with mammo, then a MRI guided biopsy. Then another MRI. They still couldn't determine the exact size until my lumpectomy. I had two opinions. The first surgeon suggested taking both breasts. The second(a surgeon that is so good they built a breast center for HER) suggested lumpectomy or partial mastectomy. The day of my surgery I had tumor markers in from the biopsy. The radiologist had a hard time finding the tumor also, when she put the wire guide in for the surgeon! Never once was chemo suggested before surgery. Come to find out the tumor was 1.5 cm. and they took 13 nodes, one was positive for cancer. I too am Her2+++ with a tumor grade of 3. What is their reasoning for doing chemo before surgery?
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I have no idea Donalee. That is one of my questions. I feel I am being herded in the cattle shute with all the other cancer patients (breast and others) and prodded along. I was told today when ask for a second opinion that If I choose not to have Chemo on Tuesday to let them know cause there is a long waiting line to start.
Thanks Alymarie. UC Davis Med center is here in town and a good thought. I am outskirts of Sacramento. Kaiser (my HMO) says I have to get the second opinion from one of their in house Dr. first and then he can send me outside of Kaiser.
The treatment is what we all are doing in here and that is Taxotere, Carboplatin every 3 weeks,for 6 months and Herceptin every week, but they never said how long on that one. This was the dose when I was CUP (cancer of unknown Primary) and it had a very poor outcome. If I am an Occult Axillary mass (occult meaning hidden) puts me in a much better prognosis of the outcome. Would the goal of such hard treatment be the same? That is one of the questions I am looking for. I just don't think they are taking in ALL the test to come up with the treatment. One single biopsy is not enough. This lump under my arm was two weeks ago the size of a walnut and today it is the size of a baseball.
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Hi Cupcake,
I agree with the rest of the girls. You are NOT being unreasonable. None of us are doctors (that I know of), but we all want to feel reasonably comfortable that we know what is going on, and that we understand the purpose and goals of any treatment we are receiving.
One problem I sometimes have with doctors is that I think I don't always ask a clear question. Like, I have a question in my mind but when I try to articulate it, I get in a hurry, or I get intimidated, or I think 'They know better than I do', and I just nod as they give me an incomprehensible answer to my incomprehensible question. I have found that writing down the question beforehand really helps, so I can clarify it and then just read the question exactly as written.
What also helps for me is to call the office back if I still have unanswered questions after I meet with the doctor. Often, you will speak to a nurse when you call back, but they can often offer a more straihgtforward answer than the doctor. I think it is perfectly reasonable to ask "What is the goal of doing chemo when we don't have a firm diagnosis? What is the thinking? I want to do everything we can, but I want to know what's going on."
I was raised to always be polite, respect authority, don't make waves, etc. It's very easy to fall into that. I decided when I was diagnosed with cancer that I was going to ask any and all questions and if anyone (including the docs) don't like it, they can kiss it. I'm the one that has to deal with this and I'm not apologizing to anyone for wanting to be informed and understand what is going on. Cancer may kill me, but it will not be because I was too busy being polite.
I think we are much better prepared to mount this fight when we feel empowered about what is going on around us.
I also agree with Aly's suggestion that you try to go to an NCI Cancer Care Center. We have one here in Tampa (H. Lee Moffitt), and I feel like I am receiving the best comprehensive cancer care I can get. My diagnosis was done by a general surgeon, and he is very good. But for total care, if you've got a cancer center near you, I think it is worth looking into. I had all of my records transferred over there as soon as I was diagnosed. My insurance company said, "Is this for a second opinion?". I said "No, I am going to be treated there" (before I even met with them). I dare any insurance company to tell me I cannot get the best treatment available in my area. I'll be on 60 Minutes so fast, they won't have time to get their pot pie out of the oven before the broadcast.
I wish you all the best and hope you get your questions answered before you start the chemo.
Lynn
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Cupcake, your situation has me totally confused. I had an MRI before my lumpectomy, then they removed the lump (then I had a re-excision and mastectomy) then I started chemo. How can you have an occult mass if you can feel it? Sometimes they do the chemo before surgery if the tumor is large, so maybe that's why they're doing chemo first. It sounds like you need some answers or a second opinion, Cupcake.
I came back from a wonderful weekend at the beach (well, child #2 had to go to the Red Cross - Cruz Roja- because she got stung by a jellyfish, but she's OK). then today I had tx#5 - very uneventful. I came home and took a nap and feel good now - Neulasta shot and 50 cc's in the expander tomorrow. Only one left!!!!!!
Hope all headaches/sinus infections/nausea, etc,etc,etc are on their way out! Kay, I hope the Emend helps.
Good night to you all -
Sue
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That's a very good point Sue as I read the report it does say a small or any detectable breast tumor so maybe that is not it. Thanks for pointing that out. If this lump then is getting bigger by the day could it be the tumor? If it has not spread yet do you think it could be in the earlier stages? If this is the tumor then it would not be the cancer of unknown primary then. So maybe the surgery is to reduce the tumor, but if that was their thinking then they had an idea this lump was indeed the tumor??/ All this is so confusing but I'm sure the second opinion will clarify a lot of things. Lynn I have made a list as long as the list for Santa Claus. Unfortunately when you call back you get an answering machine and they call you back according to priority so I would not expect to get a call back until the end of the day or next as best. Well off to the port surgery, will post tonight. I sure hope I don't get sick like all the other times they put me out. I was thinking that they give you antiemectics for chemo why can't they for this if I have had a history of being very ill after being put out?? Doesn't hurt to ask I guess. I don't mind surgery and can handle pain , but don't do well with nausea. Doesn't look good for me going into Chemo, but ya hafta do what ya hafta do to get well. You guys are great. Hope your feeling good today Lynn and have a happy few weeks until you go in again. Did you put the smily faces on your calendar so you can remember the days next time to see if they are the same?
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Yep, I've got my smiley faces, frown faces, and flatline-mouth faces so I can remember how I felt.
Best of luck with the port implant. Hopefully it will be uneventful.
Lynn
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Cupcake;Your situation makes me want to come swashbuckling out to your HMO with my bald head and a machete! Just the fact that your situation is so confused and you are so scared makes me want to hurl...and my nausea is over this round. What you need is an advocate, or someone to champion your case, who will not accept any form of bovine fecal matter from anyone in a white coat.I'm not just spouting off here. Lynn's suggestions are very good about writing down questions when you're less flustered and calling for clarification later. Another thing to try is to enlist the aid of the office nurses. Often nurses are trained (ask Nan!) more as educators--to communicate with patients, allay anxieties, and explain things in terms people can understand. Physicians are sometimes good at this, but not as often as nurses.Here's another thing I did. Because prior to this cancer thing, I was the biggest wimpy weiner in the doctor's office you could ever find. My primary has to take my blood pressure twice, once at the beginning of the visit and once at the end, because there's about a 30 point difference. (He says I have a hair-trigger sympathetic nervous system). Anyway, so because I'm so anxious in medical situations, whenever I would have an appointment with my surgeon (I had a tumor excision, a node biopsy, another wide excision, and then a mastectomy), my husband (who's a scientist and speaks the lingo) and sometimes a friend of mine who's an osteopathic doctor would go with me, so that there would be extra sets of ears hearing anything that might go over my head due to being freaked out. They also thought to ask questions that I didn't think to ask, even though I'm fairly savvy. This champion doesn't have to be a health care professional--he or she could be a concerned friend or relative--but whoever it is, it's better if they have a little chutzpah and are not easily swayed by a doctor's intellect or arrogance. Man, if I could, I'd go with you myself. And the doctors would think they were in the middle of the Spanish Inquisition.Another thing you need to make perfectly clear with this port surgery. Make sure they know that you get violently ill from anaesthesia. Exaggerate it. I have tape/bandage allergies...and boy, every time I have a procedure, I make sure those nurses and doctors are mortally terrified of causing dermatitis on me. Every time I've had anaesthesia, I've been given anti-nausea meds in my IV. Hopefully, they're not cutting corners with you.My prayers are with you, that your whole situation be unravelled with a clarity and that someone in your medical community comes to the forefront with leadership and the knowledge to do what needs to be done.And Cupcake...please yell and scream about that thing growing under your arm. Sometimes the doctors get so focused on the little microscopic cells growing in the culture that they can forget about the water buffalo taking a dump in their coffee cup, if you catch my drift.0
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New t-shirt idea for chemo;
I'm on the Highway to Hell
(can you tell I'm a huge ACDC fan?)
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Donalee; You should find out if the Chamber of Commerce of Hell, Michigan has a website. That town makes a lot of money selling tee shirts. They might have just what you're looking for. I prefer "I've been to Hell and back" myself!
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Cupcake,
I am so confused by the whole song and dance that they have put you through - and if you are confused, then in my opinion, they have not done a good job of explaining things to you. That has me (and I am sure a few other ladies) pretty concerned.
You really need a second opinion. How did they know that you were HER 2+ if they have not done any surgery yet? Could they tell that from the biopsy? I am not saying that it is impossible to tell from a biop - in my case, they had all that tumor information from the lumpectomy. Then, they used that info, combined with my young age, to determine that I needed chemo.
Let someone at the office know that you really need your questions answered. Even if you just get the machine - tell the machine that you know they need to set chemo schedules, but you can't make an informed decision unless you get your questions answered.
As far as your nausea goes from being put out - tell the pre-op people that you are hypersensitive to anesthesia and that you would like a Scopolamine (pronounced: Sko-pol-a-mean) patch before surgery, in addition to whatever else they plan to give you for nausea. Make sure that they have something ordered for you after surgery as well, in case you need to control the nausea once they have sent you home. Don't ask - tell them that you WANT something for nausea - and ask them what you can take for possible constipation. Anesthesia and pain meds can stop you up - you want to make sure that you know BEFORE you go in what you can take and when you can take it.
Don't worry about feeling "bossy" or demanding. If anyone should feel embaressed or self-conscious, it is them because if they aren't telling you this stuff ahead of time - then they aren't doing their job. Maybe they see this so much - day in and day out - that it is easy to run on auto-pilot, but this isn't YOUR daily routine, and they need to remember that its new for every patient. There is no excuse for inadeqaute patient teaching!
Okay - can someone give me a hand off this soap box?
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Hey Empress and Donalee:
Okay, so there is no AC/DC shirts here (bummer for me cause I think Shook Me All Night Long should be a national rock anthem. I LOVE that song!) but these are pretty good: http://www.gotcancer.org/store/cafe_store.php?catid=1
And Empress, you are so right about an advocate. Some hospitals have them - but you have to ask. I am looking into becoming a Nurse Navigator. They have them at the clinic in Nebraska and their job is to be the contact person for a newly diagnosed patient and walk them through every step of this terrible journey. If Cupcake had one, she would be on the case and clearing up all this crap.
I am a great advocate for other people, but when it came to me - I was usless. You are so paralyzed and stuck in this place where you keep looking around and keep thinking "this can't be my life" that you are not able to act for yourself or think like your normally intelligent self. Who doesn't need a Nurse Navigator, right?
Thanks, Donalee - I gotta go crank some AC/DC now!
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