first chemo done
Comments
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Hi Janet..
We were hoping for better news for you....although we are all in this together. You can always get a second opinion? I know many ladies have done that.
Sentinal Lympnode Biopsy is painful yes...but it will give your caregivers a better idea of what is going on with you. Your onco doc will give you many of your options. Hold on until you see him/her about your next steps. They are truly the ones who can help you with your decisions.
As for the wig...just keep a clip of your hair to help match your natural hair color. Then buzz it off when you start chemo...it will fall out...unless you are one in a million... There are so many cute wigs out there...and you might find that you want to be different for a while.
Please let us know what your ONCO says....
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Hi Janet !
Well hello there. First... breathe.... I know this is a lot to take in on one day. Just remember that there have been a lot of folks before you go through this. Like Cindy said, we are in this together.
I will try my best to supplement the information your doc gave you with some additional perspective because I know you are hungry for information - we all were. I will also you some tips as to what kinds of questions you should ask.
In regard to your diagnosis:
1) You are what is called "triple negative". There is an entire forum on this site for triple negatives and the challenges associated with being triple negative. Being ER/PR neg. means that hormone blocking therapy is not in your future (so at least you won't have to deal with the side effects of that). But, you won't be getting those because hormones are not "feeding" the tumor. Herceptin is also not in your future due to the Her2 neg. status.
2) I am not that surprised the surgeon is gently approaching the idea of a double for you. The reason why is that because hormone blocking therapy won't work for your tumor type, the statistics for recurrence are higher than if you were ER/PR positive. It appears that he/she is trying to reduce your risks further by suggesting the double. This is definitely something to talk with your oncologist about (i.e. how does removing the other breast affect your recurrence risks).
3) Yes, cell necrosis usually is a sign of an aggressive tumor. Basically, the cells are growing to a point that there is not enough blood to go around - so the cells die. In other words, it grows faster than a blood supply can get set up for some of the cells, and they die. That is also why a large clustering of "microcalcifications" can be a warning sign that a cancer is around. Microcalcifications are the byproduct of dying cells.
4) The surgeon is probably recommending a sentinal node biopsy due to your physical examination and to better understand where you are at. No.. it is not fun, and you will be sore. But, it is very important. You can do this.
5) I suspect given what you said, your order will be chemo, surgery, radiation (there is a chance you won't need radiation depending on your surgery and location of the tumor). There are protocols for certain tumor sizes, locations and types that warrant getting chemo first to reduce the size of the tumor before removal - it enhances your chances of getting clear margins in surgery. That said, I know LOTS of women who did things in this order and by the time they got to surgery, there was no cancer around. Talked to one of those ladies tonight in fact. So, have faith.
As for questions to ask (and write ALL your questions down BEFORE you go in):
1) Ask for as much information as you can about your situation - size, location of tumor, what it means to be triple negative. Get copies of ALL your pathology reports (I am not kidding). You have a right to these.
2) Ask about recurrence risks and things that could improve your stats - surgery, chemo, radiation. (This is where you should ask the double mastectomy question I mentioned above). What does each of them buy you or not ? And what are the risks associated with each ?
3) Ask about the order of treatment - (i.e. chemo, surgery, radiation?) and why that is being recommended.
4) For chemo, I am assuming they will talk to you about a regimen they are recommending. Ask him/her why they are recommending that particular regimen for your case, whether there are alternatives and what are the trade offs with each. I suspect you will go with the first reco, but it is always good to know your options.
5) Also for chemo, make sure you understand the total number of doses they are recommending and how many weeks in between.
6) Ask if you qualify for any clinical studies.
I am sure you have many more questions, but I know it is hard to think straight. So... just write everything down, and don't leave the room until you get them answered. Some docs will let you tape record them. Others won't. It is a personal preference.
Now.. hang in there. You are starting the journey. Come back tomorrow and give us the news (which, by the way, will raise even more questions!).
Jill
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Ladies !
Well... I am not sure if you realized this or not, but our little thread just crossed 10,000 views. I had been watching it to see when and or if it would get there.
To be honest, I am not sure all the reasons that this particular thread has become so endearing to me personally. It was started by someone who never came back, and is not even in the right place on the board. (I guess it should be in the chemo forum).
But, for some reason, it seems to have attracted a lot of like minded women - strong women who where dealing for the first time with their vulnerability (and not liking that a whole lot), but refusing to be victims, ready to support, knowledgeable, funny, smart. The ladies here are the reason I kept coming back. And the funny part is that even after some of us have been through much of the journey, it continues to attract these types of ladies.
So, thank you to those that gave so much of your time and thinking - and sharing your journey. All of you have made a big difference in my life. And as we have crossed 10,000 views, I would like to think that you have made a difference for a lot of other women as well.
Jill
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Jill, as always, you have posted some incredibly thoughtful, insightful questions and I hope it helped Janet through the scary time of figuring out what to do to next. You have been so helpful to me with your informative, calm and understanding posts!
I am doing better with the port now, I'm glad I went to the onc to have them look at it - it was becoming clogged and if they hadn't been able to get blood out of it yesterday, I shudder to think of the alternatives I would have had to do if I waited until my blood draw on thursday. The fog has lifted some, but I am experiencing a lot of numbness in my hands, and the constipation I had Thur-Sun has turned into diarreah with a vengeance. Combine that with the wildly pounding irregular heartbeat I seem to get with treatment (it's irregular anyway, and my regular meds aren't helping it), has helped me to come to the decision to talk to my doctor on Thursday and stop my treatment. I am dealing with side effects plus plus, and my body clearly isn't accepting or helping this matter - it's like it is trying to reject the port (and has been since it was put in last month) and I just have one out-of-the-realm complication after the other.
I will be following on the threads, because a lot of you have become sisters for the cause, and I truly enjoy keeping up to date, and as I'll still have residual chemo in my body for months, along with the Uncle Fester-like baldness I am sporting now (with cute little fuzzies everywhere), I am still in this with all of you.
Wishing everyone a peaceful and easy day.
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Hi,
Jill: Thanks for the tip. I went to the triple negative forum. I was feeling a little sorry for myself thinking I was the only Grade 3; Triple Negative out there, but apparently that's where they congregate. As always, you are a wealth of information. I'll be meeting with an oncologist this afternoon and I'll have more information then. You mentioned something about protocols regarding treatment options. If that is the case, do all doctors offer the same treatment options? The reason I ask is that I am going to the onocologist recommended by my breast surgeon (who just happens to have an office on the floor above hers!). However, I live in a suburb of Philadelphia and can get to Fox Chase Cancer Center and I was wondering if, given my Grade and triple negative status, it would be beneficial to go to such a facility?
Chelev: On a personal note...where is Port St. Lucie, Florida? My mother (who, would you believe it was just diagnosed with cervical cancer) has a winter place in Stuart, Florida.
How many treatments have you had? I am sorry that you are experiencing such difficult side effects. Please keep us posted as to your next steps.
Janet
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Janet - I just happened to be on and caught your post here at work. I don't usually do this, but I was looking something up. But, glad I caught you before your appointment.
To answer your question... the FIRST consideration you should have is the relationship you personally have with your oncologist. I don't care how many degrees they have on the wall or how respected they are... the most important thing first is YOUR relationship with them. Do they listen to you ? Do you feel comfortable with them? Do they take times to explain things ? Think about the things important to you and make that the highest priority. If you don't feel comfortable with this onc. then go find another one. On the other hand, if you are comfortable, then stick with a good thing.
As for protocols...yes, there some explicit protocols by the National Cancer Institute that most oncs follow. I can get you these protocols if you like. But, there is enough wiggle room within the protocols to allow for "art" and interpretation and personal preference. For example, some docs seem to prefer some treatment regimens over others - and they can still stay within the guidelines in doing so.
To show you that I do walk the talk on this, by the way... I did go to a nationally revered NCCN center for a second opinion (which is always worth it in my opinion) - and saw a doctor who had accolades that lined her wall... and ended up going with a local oncologist (who has done very well by me). The difference was that I felt way more comfortable with the local doc given the rapport we developed. My point is.. most of these oncologists are extremely qualified and the relationship with your oncologist is CRITICAL. You will be with this person a long time. I know of some ladies who have not had such great relationships with their docs and regretted it (want to weigh in here, Deb?).
Sorry to harp on this, but it is something I feel very strongly about given the number of women I have seen bit by this particular element in their treatment.
I hope that helps.
Jill
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Morning Ladies...
Jill as always thank you for helping Janet through this...I think the reason so many have viewed this thread is because of your great knowledge and insiteful information. I am so glad we met here.
Chelev...Don't think to harshly on the port and stopping chemo...have the conversation with your onco doc and hopefully he/she will figure out an alternative remedy. I had the palpitations and went to my doc right away...he changed my chemo regimen and put me on Coreg a mild BP medicine which I take twice a day. He wants to keep me on it. I had constipation and now diarreah with this last chemo...it sucks and I am very fatigued this time. You can do this...don't stop unless your doc says you can. You never want to look back and think of what you could have done to battle this awful disease.
Janet...we are anxious to hear what your doc said....
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Jill...Love your new DO.....gives me encouragement....well I think the gray will be dyed first..LOL
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Hi Ladies,
Im new to this thread but have been reading and gaining lots of knowledge from you all. I thought I would add my bit in case it helps anyone.
I was dx Jan this year with 2 ILC areas in my left breast. I went for surgery in Feb for node biopsy and also ligation of blood vessels in my stomach as I was to have reconstruction (free TRAM flap) at the same time as my mastectomy. Unfortunately they found affected nodes and so recon was out of the question when I had my mastectomy in March. All went ok and I surprised myself that I was able to do most things again relatively quickly. The drains were a bit of a pain and I felt like a bag lady having to hump them around with me, but they were removed after a few days.
I was put on chemo - 4 treatments 3 weekly of Cycloblastin/Cytoxan and Adriamycin. My 1st treatment was on 16th of this month, and I felt on a high for a couple of days before I crashed, feeling nauseous, fuzzy head and sleeping lots. However, that lasted for about 4 days and Im feeling great again but Im not looking forward to the next lot. I was hoping to be one of the 1 in a thousand people who didnt lose their hair, but running my fingers through it today guess what lol. So I have decided to get it all shaved off this afternoon.
I also have to go on Taxol once a week for 12 weeks and then I have radiotherapy and then I take Arimidex for 5 years.
So the thing that worries me at the moment is that in this country (NZ) we have just had a number of students diagnosed with swine flu. What happens when you are on chemo as you are more at risk? Im seeing my onc today, and I will ask him and let you all know.
Love n hugs to you all
Jeannie x
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Welcome Jeannie....from New Zealand (Down Under)
Keep away from crowds is the best solution.....
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Hello all !
Jeannie - Happy Wednesday to you! If you are looking for a good place to commisserate about those miserable chemo SE's, you have found it.
We have swine flu here too. They are telling us to stay out of crowded places and take extra precautions like lots of hand washing and the like. Theoretically, immune systems can be depressed on chemo (which is why they give us the Neulasta shots and stuff). So, extra precautions should be taken. Let us know what your onc. says ! BTW, I have to be on an airplane on Sunday. Just what I need... to be on an airplane during a potential pandemic flu crisis. Sheesh.
Also, good luck with the hair thing. We ALL think we will be the lucky 1 in 1000 to not lose our hair. Haven't met one yet. I wonder who is that one ?!!!
Cindy - Well, at least someone noticed the 'do. Here is a funny story about that. I go to the hairdresser today to get my hair a little neatened up. I have not done anything since my hair started coming back in and I was getting these "wispy" things around my ears. My hairdresser gets rid of the wispy things and decides to style me up. Says it would look real cute all spiky and the like. Hey, it is short hair. I am game. Puts all this gel around and spikes it all up in kind of that messy style. I LIKE it. Think it looks more feminine instead of that little boy buzz cut.
I proudly walk into the house with my new 'do to show it off to the family. My husband looks like he has seen an alien from outer space and says "It will take some getting used to". I am thinking.. "Men... what do they know". So... I go ask my teenage daughter thinking that surely she will understand the fashion statement and compliment her mom on being soooo stylish. She also looks at me like I am an alien. I say... "the hairdresser says this is the style now" to which my teenage daughter replies (and I quote).. "Mom, I think she was pulling your leg". She then went on to clarify that I am a "Mom" and not supposed to look stylish. Hmph... Well, at least hair gel washes out. So much for my attempt at style.
I go for herceptin number 6 tomorrow. So, will probably be on early and then sleeping off the damn Benedryl all afternoon. Talk to you later, ladies.
Jill
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Hello All:
Jill: The story about your new "do" was so funny. Think about it ladies, we are so worried about losing our hair, and according to the wisdom of a teenage girl, "we're not supposed to look stylish"...what was I worried about ! ?
When did you finish your chemo? Your hair looks like it has grown out quite nicely.Thanks for the tip about the oncologist. Saw one today. He went over my pathology report and explained the approach he would take (chemo then surgery). I felt kind of luke warm about him. I didn't especially like, didn't dislike him. (Although he did leave the consultation to take a phone call which I thought was a little rude!) My husband pointed out that he was clinical and professional, and that he was not suppose to be my friend. What did make me happy was that he said that our goal is to remove all of the cancer, and that is goal is "very achievable". He also used the word, "cure" several times, which also gave me the hope that I desperately needed.
Good night everyone. I have to get some sleep. MRI in the morning. It seems like doctor appointments, hospital visits and tests fill my days now.
Janet
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Good morning all (except to you Jeannie - should say "Good Evening") !
Got time for a quick post before heading off to herceptin land.
Chelev - My apologies, but I missed your earlier post. But, what you say there has me a little concerned. That said, DO talk with your doctor as you say. But, DON'T go in with the mind set of stopping treatment - because that is not the only alternative. If your onc says it is time to stop, then fine. However, let them try to address what is going on with you. For the oscillating costipation/diarrhea, I know a number of docs recommend Miralax, and that got several of these ladies through that particular SE. I also know some other ladies that similar issues to yourself and the docs changed dosages, treatment schedules or the actual meds as alternatives. My body initially rejected the herceptin, we but we have managed to find a course that works for me by altering the dosage. (As an example)
You are half way done, right ? I know this is hard, but there is light at the end of this. However, it is VERY important you tell your doc what is going on with you. Listen to his/her alternatives and suggestions for managing the SEs. In the end it is your call, but don't let the heat of the battle force your decision on the war - I hope you understand that metaphor.
In any case, PLEASE come back and let us know that the doc says and where you came out. (Oh.. and thank you for the compliment. It is nice to know that someone thinks my rambling is useful !).
Janet - You sound a little calmer today, which is good. Now.. I never said your oncologist had to be your "friend"... I just said that you need to be "comfortable" with him/her. Unlike your primary care doc, which I am assuming you only see once in a while, you will see your oncologist very frequently and relying on this person to make life and death decisions for you. The two biggest complaints that I have heard from ladies who had less than optimal relationships with their oncs are 1) they don't listen to me (and/or make me feel stupid), and 2) I feel like I am being treated according to a "book". So, decide what is important for you in terms of what you need from a doc in this regard. However, I will point out to you that you only have one "data point" on the table. It is hard to compare when you have nothing to compare to. So.. I might suggest you get a second opinion to both get more data in regard to your situation and to calibrate your feeling on oncologists. I mentioned to you that I did something similar. While I did not care for that second doctor, I did find her opinion very useful - AND I figured out what I liked about the other doc. Make sense ?
That said, I am glad this guy gave you some "hope". I also believe your situation is "treatable". I go to group with a triple neg lady who was in stage 4 (metastasized) - FOUR YEARS ago. She has to take Xeloda for the rest of her life, but so far, she remains cancer free. So there is hope. Have faith. I know it sounds cliche, but attitude is a big piece of this. I personally cope with it by getting mad at it and saying I won't let it win.
So hang in there. By the way, you did not say what this doc was recommending. Where did he come out ?
Jill
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Well good afternoon ladies...
I saw my Rad Onco today and it was a great two hour session...he went through everything with me and I felt really good after meeting with him. He did say something that was a bit of concern...he said that reading my DX it showed stage 2 but he was thinking since the tumor was close to the top of my skin - hence underneath the nipple that it was more of a stage 3. Then he circled back and said because of the size and what they found it was more like a 1 to 2. So that was a bother....But good news...he said that the PORT needs to GOOOOO.....and that I have an appointment tomorrow to get my similation started...he also said I will be given 33 sessions. I am ready...BRING IT ON....
I may have mentioned that my Butt crack was itching...well...Today I called my Onco doc and went to see him...its a yeast infection brought on by the chemo...So I am taking Fluconazole and he gave me Nystatin powder to put in my crack. Just want the ITCHING to go away....its driving me crazy...
Okay enough of me...how is everyone else today????
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OK Cindy... You win... I thought I had seen ALL the chemo side effects, but you managed to find yet one more..... the dreaded butt crack itch. I am not making light, as I am sure it is not at all pleasant, but you do take the prize for the most unusual and specific chemo side effect. Anyone else got anything to top that one ?
In all seriousness, I am glad you appear to be moving on. Good news about getting the "alien" (i.e the port out). Now.. take care of that itch.
Well... I had a bit of a setback today. I did NOT get my herceptin treatment. My oncologist decided to halt them for a bit and sent me to a cardiologist to get checked out. The MUGA test was still OK, although slightly down from last time, but still in the OK range. What caused this is that I finally confessed that I have been having some minor chest pains coupled with shortness of breath. I had not told anyone about this until l confessed it yesterday to a friend. It was almost like if I did not mention it, it would not be real. That has played into some interesting consequences mainly because now my husband knows (more on that in a bit), and he is not too awful thrilled with me for keeping this from him. So.. on top of having to see a cardioligist and having my herceptin delayed, I am in the dog house. I kind of screwed this one up.
Anyway, here is how it played out.... I went to the doc and was all ready to get the herceptin. She asked how I was. I say OK...except for these minor chest pains. Not debillitating, but noticeable. Worse in the evening, and notice some shortness of breath associated with them. She says that she will stop the herceptin today such that I can get checked out by a cardiologist - just to make sure - even though MUGA was "OK". Grrrr
Now, here is where it gets interesting. My husband INSISTED on dropping me off at the doc's office this morning. He does not like me driving under the influence of Benedryl. Then, he goes to take care of something for his aunt, thinking I am going to be occupied for the next 3-4 hours. Of course, treatment gets canceled. I call him to come get me.. no answer on the cell phone. I am NOT a patient person in the slightest. I am annoyed. Because I live about 2 miles from the doc's office, I decide to hoof it home. Luckily, it was not raining, but was overcast - so not too hot. I am walking, walking, walking.... trying to reach hubby (why the hell have a cell phone if you don't answer?!!!). Anyway, by the time I reach him, I am almost home and am furious with him.
OK.. I wanted to start exercising, but let me say for the record, that I don't recommend that you start out with a two mile walk when you might potentially have cardiac issues. By the time I got home, I was simply wasted. Wow.. not my brightest moment.
Anyway, I have very mixed feelings about this whole situation. I am glad my oncologist is being cautious, but damn... this means the treatment is dragged out again. Grrrrr..... Obviously, I don't relish the idea of this stuff potentially playing with my heart. It's not one thing, it's another.
And.. my husband and I have reasons to be mad at each other to boot. I am mad because I could not reach him (and he is way guilty over that), and he is mad because I kept the chest pain thing from him. I just figured why get him all worked up if it was nothing. I was getting the freaking MUGA results anyway. Sigh.. can't win this one.
Well, that is my weird day. Hope it is going better for the rest of you. On the upside, at least I don't have the butt crack itch.
Jill
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Jill...Jill...Jill....What were you thinking....DO NOT KEEP any feelings, pains or effects from your doc or family...My gosh...now you have me worried.
Why is herceptin needed in your case? I know you have the answer.
Hopefully they can do something else and find an alternative for you...my gosh....and we thought you were past all that...
And WHY do you think WALKING home was a solution...GIRL....did CHEMO BRAIN effect you at that moment???
Jill keep us posted on whats next for you....we are in your corner....HUGSSS.....
YES...if anyone is going to get anything UNUSUAL...it will be ME. It was so bad last night I got up in the middle of the night and looked for anything that I could put on my crack to keep it from itching...nothing worked...and my doc says it made it worse...
Actually the worse part was bending over the paper patient table in the docs office with my BUTT up in the AIR and the doc putting gloves on and SPREAD the butt wide open....You have to know me and my butt...I have probably size 45 inch hips and spreading that thing...everyone would have to leave the room...I was so embarassed...My husband was in the room...and on the way home I asked him..What did it look like...and he laughed and said..."At least he didn't ask me to spread you apart"...so in retaliation....I am now having my husband put the powder medicine in my BUTT Crack....
Paybacks are Hell....LOL
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Jill: Sorry that your day was such a downer. The silver lining...you can be reaffirmed of your husband's love and concern. (and of course, that he'll never fail to answer his cell phone again!)
Cindy: Butt crack itch...what can I say..I'm sorry.
Chelev: Please keep us posted on new developments. I'm concerned for you and worry about what you're going through.
Jeannie: Welcome.
Janet
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Cindy - I developed the butt crack itch after treatment #1, and the nurse told me to use benadryl cream as she thought over the phone it was simply redness from peeing out the chemo, but when I went in for the bloodwork and mentioned it to the doctor, it was because my WBC was so incredibly low, and he prescribed the Nystatin cream for it - it was terrible, all the way from the front to the back, waking up at 4 a.m. with intense itching. that was my second-tier side effect #1 that was difficult to diagnose (yeah, how do you show him something like that?) and get rid of. After I had the 1st Neulasta shot and the counts went back it, did it go away, but them we started with the shortness of breath and coughing - an allergic reaction to the Nuelasta.
I am still dealing with pain in the port area, sometimes all the way up into the shoulder, but mostly along the line into my chest - and the irregular heartbeat. I see my onc today to discuss that and the fact that I have done some very deep soul searching, research and have had lengthy discussions with my family, the breast health navigator at the cancer center and a few others, and I definitely am stopping my treatment. Since it was being done more as a preventative for a future possible something and not to stop any cells that anyone actually saw or knew about, I feel good about stopping where I am and getting this round of secondary side-effects to feel better and stop. I am very concerned about the port area still hurting (deep concern this really is a clot building up in there), as well as the irregular heartbeat, and with the non-stop coughing from the nuelasta shot, (same as what put me in the ER the first time), it really is too much. Have I not been having 2nd tier side effects that are increasing, I would keep trying to do this - even though I am rebelling at taking so many things to make the side effects tolerable.
I'm not bugging out on the rest of my treatment plan - I'm sure next step will be to meet with the rad onc to get my treatments planned and started for radiation in a few weeks, and to get this darn port out of me as soon as possible too. I want to be healthy and healed, and have not made this a rash decision, but what I feel and know is the smart and right decision for me.
I will continue to stay on these boards and update you on my condition, especially with the port. You guys are my support system and friends and we're all going through our own versions of hell to get to the survivor side. Hugs to all of you.
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Jill, please keep us posted about what is happening with you!!! A lot of us don't know about heart issues or potential heart issues associated with treatment - and I am thinking of you because I had and am having a similar issue that is scaring me. I will feel better after talking with the doc today, and while I was in the ER on Easter, they ran a full heart series and even a CT scan on me to make sure it was okay, and all the while, I was having run after run of PVCs.
Take care and we'll look forward to hearing from you soon.
Oh, and not to ignore your post to me earlier - I understand your point of view and reasoning, and believe me, did not just rashly come to this decision. It was the culmination of these non-ending second-tier side effects that have me worried, plus some real soul searching, prayer and research. I feel like a weight has been lifted off of me, and I truly feel in my heart I have made the right decision for me. I'm really in tune with my body,and right now, I'm very much out of whack - something isn't right and needs to be fixed.
By the way, the Miralax worked, after 5 days - and then it was issues going the other way once my insides finally let the chemo go. I have IBC, the constipation version, so my usual meds don't do it,and for someone with IBC who can get incredibly constipated, it isn't a pretty picture waiting 5 days to go and then you have issues the other way, and I cannot take diarreah meds, because they will bind me up for another week.
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Hello again...
Am running a bit late this morning, so this will be a little quick (well, for me).
Cindy - I am on herceptin because I am Her2 positive (and highly so - FISH ratio was 10.0). This means it was not a very nice tumor in that it was very aggressive. While Her2 positive used to be considered the worst kind to treat because of the high recurrence risks, the development of herceptin has turned that particular prognosis on its ear. The reason I am telling you this is that this drug is VERY important for my treatment - as this was the defining characteristic of my tumor (doc is treating me like I am ER/PR neg because ER was so weak). I have to get these infusions once every three weeks for a year (so.. I will officially be done sometime early 2010). This is why my port has not come out yet and won't for a long time. On the upside, it is also the reason I still felt "qualified" to be on this thread. I am still in treatment, although I will admit it is much easier than chemo.
That said, while herceptin is a "miracle drug" of sorts, it is also a known heart risk for cardiac failure. That is why they watch me so close on this drug. The good news is that the heart stuff is usually reversible. The bad news is that I have to get a certain number of treatments in, and if we delay... well... it just drags this thing out further. I hope that clarifies it.
BTW, I found your whole decription of the butt crack thing hilarious. Your attitude about this whole thing is very refreshing. Finding the humor in a bad situation... that will go a long way.
AND... I am going to tell my husband that it must have been Chemo brain that caused my behavior. What a great built in excuse !
Chelev - I completely understand your situation. I am sorry you are going through such stuff. Please let us know what your onc. says. Just one question that was bothering me, though. You said early on that you were getting four treatments. I was surprised at the time they were going the port route with you for 4 treatments. Usually 6 or less, they don't bother - and given the issues you have had, it makes me wonder. Did they go they go this route due to bad veins or something ? Sorry to be so nosy, but after hearing you describe the port issues, I wondered again.
Janet - Thanks, as usual for your thoughts. Any news with you ?
Anyway... got to go to work. Talk with you soon.
Jill
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Jill, hi. No, you are not being nosy at all!!! They went with the port because I had a lumpectomy and sentinel node biospy on the right side, and they wanted to leave me with one "good" arm for blood draws and stuff. I wasn't thrilled about the port, but while it was working, it did make the infusions easier, because it is hard to start IVs in my veins.
I'll keep you posted after my appointment! Have a great day at work. That's where I am right now too.
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LOL, I'm sorry Cindy but that's hilarious......still chuckling........well I go today to get the drain out! In fact, gotta leave here in about an hour....so pray for me that it doesn't hurt too bad, might just take a vicodin beforehand..........I drove myself to the store yesterday, first time driving since surgery! Course came outta the store shaking and sweating, but it was worth it to get out! AND slept on the lumpectomy side last nite, it was wonderful..Oh and no morre surgery..just go to radiation to take care of any small dcis cells there might be...........
Jill, what were you thinking??????? Walkng 2 miles? Don't make me come hunt you down and kick your butt...and hopefully all will work out at the Cardiologist........
chelev, I had pain from my port also...it went into the collarbone and all, I hated it, got it out when I had my surgery and believe it or not, I still have the same pains and twinges I had when it was in..guess will take my body time to get used to it being gone...........
ya all be good, still laughing @ Cindy
Love and hugs
Deb
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Deb, I just came home from the doctor and am scheduled for two stat tests tomorrow regarding the port issue - my onc thinks I either have a clogged port (let's hope and pray for that one) or a blood clot - so I am getting a chest CT scan w/contrast first, and then the port test. I took an ativan to keep me calm so I don't let my thoughts race all over the place about a clot. If it is a clot, I'll be admitted to the hospital so they can treat it right away. Hopefullly it is just a clogged port and I can schedule it's removal soon.
My onc agreed with me 100% that stopping treatment is the right choice for me, given the way my body is reacting to everything with secondary side effects occuring every time, and getting more serious. He was such a sweetheart and even gave me a hug. His main concern is finding out as quickly as we can about the clog vs. clot and getting that resolve - he is on call this weekend, which is wonderful, especiallly if I end up in the hospital.
So, even though I will no longer be getting treatments, I am still dealing with side effects that are hopefully not serious. I'll keep you posted as soon as I am able to! If anyone is having pain / swelling / tenderness after their treatment or any time in between, please let your doctor know about it immediately. Apparently the IV nurse who checked me on Monday to get blood out of it should have just sent me for a CT scan right then and there or consulted with one of the doctors in the office (my doctor was at a different office, or I would have seen him right then). So, if something doesn't feel right, get it checked out!!!
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Cindy..OMG.. I was laughing but not AT you but(pardon the pun) With you!! I am experiencing something very similiar..only mine is more like sores around the anal area....I'm like.. WTH?? Haven't I had enough side effects.. and then this problem?? And this is AFTER my chemo was done. My face is horrible too.. bad acne.. big toenail is turning real dark purple.. hope I don't lose it.
It's like the chemo is oozing out of my body through all openings.. having it's last say!!
Hope radiation is more "fun" then this!!
Glad you found something to relieve the itching, Cindy
Jill...hope things turn out well for you.. and quit being so damn stubborn!!(I can say that because I am Taurus stubborn)
Chelev...I understand your need to make your own decision and feeling good about it..I went through wondering if I should take the last 2 Taxol rounds or just stop(I hate feeling like a quitter) and then realized I had to do what was best for my body which has taken a stomping with the 4 rounds of AC and 10 rounds of Taxol.. sometimes, we know our bodies better then anyone. Best of luck with the rest of your treatment!
I start radiation in June.. have to say I am not happy about the side effects I have heard about but I know I am usually the exception in most cases instead of the norm so there's no sense in getting worked up over something until I actually start getting the rads and see what happens
Prayers and positive vibes to all of you ladies.. Hugs
~Belinda~
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Hi Ladies...
So glad I was able to help make some laughter...we all need laughter in our lives...
Chelev ..so sorry you are going through some tough times right now...You know your body and as you even mentioned if something doesn't feel right get it checked out....Please keep us informed as to what next steps you are taking.
Jill...thanks for explaining. You know what is best for you and your docs seem to know what the complications are and will fit the right treatment in for you. We want you to be cured for good! Yes, work that CHEMO Brain...you can't be too smart all the time...LOL and a little sympathy on the DHs part doesn't hurt...LOL Mine is still gripeing about the powder sessions he has to do for me....hehehehe
Deb...We are anxious to hear how the drain extracting went. And don't kick Jills but...she may end up with BUTT CRACK ITCH...LOL
Well I had my radiation simulation today...it was a non-event. I got molded and tattooed in two spots. One on my breast bone right in the center and one on the left side of my breast under my arm at the bra line. Two purple Dots. Looks like my other moles...LOL
I feel bad that you ladies are having some tough times...but I do have some good news to share......Yesterday during my consultation my Rad onco doc thought because my tumor was close to the skin area that it looked more like Stage 3 than a Stage 2 which concerned me. This really worried me last night as you could imagine. Today my doc came in to make the markings and said to me that after we left he went over my pathology report and analyzed everything and said that after his findings he has catagorized me at a STAGE ONE....It made my day for sure...I am so excited I can't stand it....
My rads will begin on May 14th at 8:45 in the morning for 33 sessions and will end on June 30th. Hey...getting there and almost done....
Ladies...please take care of yourselves...and keep us posted...
Hugs,
Cindy
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Cindy aka Crack, that's what I'm calling ya from now on.........and everyone else........the drain removal was nothing! I felt absolutely nothing...this after asking my DH "How much tubing do you think is in me?" (While waiting for the nurse), his reply? "Down to your feet".....Coulda smacked him. But it went fine and then the BS came in and she says "How does it feel to be cancer free?" She gave me a big hug, said she was so happy about my great response to treatment. So the surgeon is done with me until November when I'm due for a mammogram...next I do see the oncologist, I assume about moving onto radiation............and after that the arimidex. So, Crack, I might get to go thru radiation with ya after all! LOL
Hugs
Deb
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Good evening my new friends!
Cindy: You must be elated to go from a Stage 2 to Stage 1! What wonderful news!
Belinda: I love your attitude about not worrying about things until they happen. I am trying to cultivate the same way of thinking. Since we have almost identical stats, I'm very interested in your experience.
Jill: You are soooo qualified to be on this thread! You are such a wealth of information and encouragement for the rest of us, that the thought of you NOT being here is worrisome to us. Having said that...yesterday, you mentioned a women you know who is a triple negative who is doing well on a drug named Eeloda. Is that something available to us triple negative girls in lieu of hormones to keep recurrences at bay? I have to admit, I've been concerned after I go through Chemo I'll be left to my own devises and be quite vulnerable. (Don't forget to tell us how you're doing with your heart issues.)
Chelev: You are in my thoughts and prayers. Let us know how the tests come out.
Deb: Let us know how you made out getting the drain out?
The first bit of good news that I have received in a month...yesterday's MRI didn't show any additional cancer in either breast! Finally, one little ray of sunshine. Whoever thought that I'd be happy to hear I have only two lumps in one breast!
Janet
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Deb...I couldn't wait for tomorrow so I went to check to see if you posted...GREAT NEWS...see...and you were so worried. Your DH is a character.... And excited that we will be doing Rads together....YEAH.....
Janet...awesome news on the MRI...We can now focus on the ONE BOOB....and get the two lumps out of there!!!!
Hugs to all...CRACK
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Janet, I didn't feel anything when they pulled it out, not one little thing, I was in shock!
Crack.....Yes he thinks he's funny...I didn't find it funny at the time... I was scared to death but he was trying to get me to laugh and forget about it, so will forgive him....I gotta remember to call the onc tomorrow but I'm telling ya what, he even goes near my boob to feel it, I'm gonna punch him! LOL.....right now it's swelled up twice the size of the other one..hehehee, and it's perky! So I now have Perky on the right and "One Hung Low" on the left..........but it does still hurt..not constantly, just those annoying pains ya get after surgery when stuff starts to heal.........
Luv, Hugs to all
Deb
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Debbie: I am soooo happy that you responded so well to treatment. Your story was JUST what I needed to hear!! The words of your breast surgeon, "cancer free" must have been music to your ears! I need to hear success stories like yours so that I know I can one day be counted among them. Thanks for providing some hope to those of us who are just beginning to embark on this journey. (I really, really needed it!)
Janet
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