Starting chemo July 2014
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Blownaway, thanks for the tip .Im going to the pharmacy right away ...,
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Dar06, I wish it were that easy, to choose between the two! Some of us react to radiation badly as well. Do you know how many rads vs how many & what kind of chemo you would need?
Mommymel, you've got the right idea with your green juice; don't forget lots & lots of fluids. I'm not a water drinker but I'm drinking apple juice (unfiltered) by the quart. Colace as well, and if you check with MO you should be able to add something like Ex-Lax or Correctol if it gets too painful. Metamucil works too, or something like that.
The anger. It grabs hold and doesn't want to let go. This is actually an entirely normal reaction to where we are: our bodies have been attacked by this monster, breast cancer, and has been violated, some of us horribly mutilated, now invaded by deadly chemicals, how else should we react? Should we just sit back passively and let it happen? Should we happily cooperate? Each of us must find the response that works for us. Some of us will find great relief in some kind of antidepressant or mood enhancer and that's good. We all have coping mechanisms and that's what we need to draw on during this time. The anger is normal. At the same time we need to be careful not to inflict it on those who love us and are trying to help. Because we need them. Come here and let it all out. We understand and we can listen to each other without taking it into ourselves. (And yes, I'm talking to me as much as any! I needed the reminder.)
New symptom: tender head. Hair loss is probably a bit more than normal which was more than most people's normal but no bald patches yet that I can tell.
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I think know things are finally getting better. This is day 8. A bit of a residue of the big "D", but the last rx (Lomotil) seems to keep it in control. I hadn't even turned on the computer for a couple of days, so I had a lot of catching up to do on how things are going for all y'all. I want you to know that it does get better. Nothing stayed down and nothing stayed in. I could barely swallow anything without gagging. I ate a teaspoon of food at a time. I lost over 10 pounds, which I suspect was a lot water weight. Yesterday, I went to the white rice in the BRAT diet. I hadn't eaten white rice in 2 years because of diabetes. Hubby blended it, added a pinch of Xylitol for sweetner, and vanilla almond milk. It stayed down and in. I ate some again this morning, then in an hour I ate a smushed piece of ripe banana, then in another hour some old fashioned chicken soup broth. I'm not 100% yet, but I'm on the road.Each of us can endure anything for a few days at a time. We are women after all! I will suggest that unless you can use anger to instill perseverance, or some motivating emotion, it should be banned! I seriously almost had a stroke from anger one time. This will pass, this will pass, this will pass.
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BlownAway - I am getting dose dense AC starting next Thursday and the doc has prescribed Neulasta. His nurse explained the difference between every two weeks and every three weeks as others here have.
The neat thing for us is that we are getting pre-loaded syringes and I can inject myself. Meaning no drive back to the hospital. The one thing about which they were quite firm is that I don't give myself the shot until 24 hours have passed. They would prefer I was late than early.
Apparently it is a very small, fine needle. And the technique is quite similar to the heparin I gave my husband, in his belly, for a week after his discharge from coronary bypass surgery.
That's it for now, ladies. We are headed to Maryland tomorrow for my daughter's wedding. Back on Monday, echocardiogram on Tuesday, port placed on Wednesday, chemo on Thursday morning. Love to all my July sisters!
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Hi all....did my first round of chemo today.... Little tired. Haven't got sick ,(yay)... Counting down the days already. Had a good group of people I sat with.and the nurses are great!
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Dar06...find out what kind of chemo you would need. I'm doing TC ...it seems like many (most?) of us are doing Adriamycin as well. Is this the dreaded 'red devil'? It seems to be a game-changer in the chemo realm...I was told that TC was among the 'easier' varieties. All to say...this might help with your decision to find out which cocktail would be recommended. I scored a 20 and didn't hesitate to do the chemo...one rogue cell looking for a new home somewhere in my body is about to be killed for good (if not already history...). So far I've been pretty lucky in the SE department, so easy for me to say, I guess. But perhaps it's helpful to know that there are some stories that are not so bad...
On a different note...have any of you gals done the Look Good Feel Better thing? I participated in this today and it was fabulous. Loads of great tips and the loot is really fantastic. If you have it available in your area, I would highly recommend it.
Wishing all of you a restful evening and night.
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I started today as well overwhelmed. I feel pretty tired with a little queasiness off and on. SE may wait until later tonight or the next few days to appear, so I'll enjoy this evening.
Coyote you continue to inspire me with your positive thoughts...yes we can endure most anything for a few days. Glad things are looking up for you.
Chaos, I know what you mean about the anger. Sometimes I feel eaten up by it. I know we deserve to be pissed and to scream and cry, but there are times that that doesn't feel like enough. F*%K Cancer!!
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Chaos - I was really pissed at my husband today. Every little thing annoyed me. I tried to keep it in check, but I think he could tell by the tone of my voice that I was annoyed. Yesterday I just needed alone time. I also think that this stuff messes with your thoughts. I have been having the strangest dreams lately...and feeling really irritated (well - no wonder!).
My husband has been losing it with the kids to the point that they come to me and whine. Not what I need right now - a passive aggressive husband. But for the most part he's doing a good job - it's just not easy. I broke down in a coffee shop parking lot today because I called to get an appointment with my MO to talk about discontinuing chemo and the earliest appt. was 3 weeks from now. I told them (some scheduling person whom has nothing to do with their office) that was too late and then a triage nurse called me - I discussed this with her and then we got cut off. Do you think she called me back? NO!!! This is ridiculous. When I think about it (going to whine here again) I started developing a headache in the infusion chair last week (probably from something else) and asked the nurses for an Advil - and they refused - they said that they couldn't give me any. They also said that they would ask about travel - and the PA never followed up. My husband had to leave and go to the local gas station to get me some Advil. What's wrong with that picture? I lost it in the parking lot because I miss doctors that I trust and that actually get back to me. I feel like I've moved to a third world country - I know it's not that bad, but I just miss my former docs and San Francisco.
Regarding anger - I think it's more irritation than anything with me. Everything just irritates me (noises, smells, people). Given that we have been poisoned and are under attack - I think that's natural to feel that way. And we have no control over it. I'm definitely going to restorative yoga this week, start meditation and doing things to take care of myself - e.g like firing my MO!
Deb
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Regarding constipation - I read somewhere to try "Smooth Move" tea. I got it and tried it - but it wasn't enough for me. Colace did the job. Probably too well.
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Constipation-warm prune juice and a little sprite, I was given this in the hospital after a few days of constipation. Worked like a charm! lol0 -
MomtoQuads: Yes, it certainly is irritating! The last time I went through this, I did not get what I needed from my MO. It was as if there was a sheet of Plexiglas between us. Almost everyone in his office seemed to take the lead from his distant uninvolved attitude. I kept saying (to my friends) that I wanted to change doctors, but didn't. I cannot tell you how much I wish that I had done it then. My new MO is very approachable. Her staff is right there for me. I feel like it is a team effort. Don't hesitate to make a change if you don't have a good fit. That would also give you the opportunity to get a second opinion about dropping chemo.... and getting a second opinion would give you the chance to see if another doctor is a better fit.
The day I had my first infusion, the infusion room nurses were very committed to assuring that my husband was comfortable too. They said. "It's a family affair." I hadn't really thought about that too much. But they were right. I'm not going to make excuses for your husband if he is being a bad boy, but I'm betting he's scared too. Mine is.
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feelingoverwhelmed, welcome to our little group. None of us wants to be here but here we are. It does seem to get better. And we will all get through it, together.
I've added you to our list above; add the thread to your favorites so you can find us easily. You will find a lot of support and encouragement here.
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Hi Ladies,
I'm new to this thread. I had a BMX on 6/24 and saw my oncologist 2 days ago and was informed I would need chemo because I'm Her2 positive and one of my sentinel nodes had multiple micromets. I received a call today and my first round of chemo is scheduled for next week on 7/24. I know my insurance has approved my port but I don't know if I'll have it for my first chemo. I'm so not ready for this and more nervous about chemo than I was for my BMX. I go tomorrow for my echo and CT scans on Monday. This is all just happening so fast.
I've read this entire thread and I do feel somewhat better knowing what to expect. All of you ladies are amazing and I love the support on here.
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Wizard, you've come to the right place. We'll be right there with you through the journey. Share your experiences and we will do the same.
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I'm new to this site and to this discussion board. I was scheduled to start Carbo/Taxol but I had severe reactions to the Taxol both times so my Oncologist is stopping that. I'm scheduled to start Andriamycin/Cytoxan on Mon. Does anyone have any tips for dealing with the side effects or suggestions on what to expect afterwards?
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no1b,
I'm curious - what reaction did you have to Taxol?
If you have had the time to read our posts - you'll see that the side effects vary by the person. Seems that this month, we have all not had it that easy - but some people don't have that many or that severe (I read someone on another board that only got acne - booohooo for her (sorry, I'm being sarcastic).
You are smart to get informed.
I think the most common side effect that I've seen on these boards (chime in girls) is body aches (including headache) all over. In my opinion, it's just as important to stay ahead of this pain with meds as it is with nauseousness. I didn't do that (I didn't know what I could take) and that wasn't good.
The other side effects are: insomnia (on the day of infusion if you've had steroids), constipation (take Colace), diarrhea, acid reflux, metalic taste and no appetite, dry mouth, mouth sores, shooting pains in hips, joints, lymph nodes, etc., gas, puffiness (from steroids), fatigue.
I think the most important thing to do is to drink water until you can't drink it anymore. The sooner you can get the toxins out of your body, the better. And let's hope that you will be one of the lucky ones who sail through it.
Deb
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Thank you for your response MomtoIrishQuads,
The first time I was getting Taxol, within 2-3 min after the infusion began, my stomach started burning as if it was on fire. Then it spread to my face (swelling and red) that on fire feeling spread throughout my entire body and I wound up passing out on the floor on my way to the bathroom. Thankfully the nurses followed me in and caught me before I hit the floor. I was told I was unresponsive for several min. When I finally came to, my entire body was stiff and I felt paralyzed from head to toe. I was taken to the ER and with fluids infusing, a couple hrs later I was okay. The next week I tried it again, this time with more premeds and slowing down the rate. This time the nurse stood next to me when she started it, just in case. Within a min or two of it hitting my system the same thing started happening. They were able to stop it quickly and the symptoms didn't get as bad. My oncologist suspects I may have had a seizure the first time and says my body just won't tolerate Taxol. In his opinion, it's too dangerous to try it again.
Thank you so much for the advice. It was also suggested to me to take slippery elm, for the mouth sores. Has anyone tried this? If so, did it help?
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no1b4makidz72, adriamycin has a few predictable SEs, like nausea and red pee, but the degrees of those seem to vary from person to person and even treatment to treatment. You may also have either diarrhea or constipation, or both at different times. Some things to have on hand: Imodium, colace (stool softener), Gas-X (diarrhea is often accompanied by gas & cramps), Preparation H wipes, and a squeeze bottle of water by the toilet in case the red pee burns (it hasn't yet for me but each time may be different). Ginger ale is great for nausea but when the gas got bad I didn't want the carbonation. The BRAT diet is also helpful (banana, rice, applesauce, tea), you may find things taste different. Oh, and it's important to stay hydrated. It's best to drink water but I am not a water drinker so I'm drinking a lot of unfiltered unsweetened apple juice. Some people get a metallic taste, I haven't, but keep plastic cutlery just in case.
Ladies, what else can you add to that?
no1b4makidz72, I just saw your second post. The mouth sores seem to be less if you keep ice in your mouth while you're getting the adriamycin. When I had mine, they gave it via push rather than drip, and I ate a Popsicle while it was going in. No mouth sores. That said, I'm a big fan of slippery elm for sore throat etc so it would probably work if you got some. I'm told Biotene also works, and if they're really bad there is a prescription strength mouthwash.
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Wizard50...we have a similar diagnosis. I had my BMX on 5/20. I was supposed to start chemo in June but postponed for 3 weeks to do another round if IVF.
Anyway, I too was more nervous about chemo than BMX. Actually wasn't expecting to have to take chemo...went into my BMX with just DCIS. I am pretty positive the biopsy caused my DCIS to spread and become .6cm of IDC.
Yesterday was my first treatment....so far ok. It was a long tiring day because I did Cod Caps...so every 30 min they needed to be changed...always busy. But the Benadryl they gave in the IV...made me really tired! I easily drank 160 ounces of water yesterday. And plan to drink @150 ounces a day for the 1st week and may cut back to 100 ounces/day after. I've heard that really help everything...especially for cold cap users.
Fingers are crossed the s/e's stay at bay...but bringing Tylenol and nausea meds with me to work today.
Good luck!!!
-jennifer
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I am reaching out to you as a newly diagnosed patient. My head is spinning right now with all that I am learning about this. I am scheduled to start chemo on July 28 before the surgery. My onco and surgeon feels that this is better because it will shrink the tumors and make it easier to get everything when they do surgery after chemo. A little nervous though.
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Hi Wizard50
I am in the same boat with you. It seems like we are on the same schedule. I saw my onco on Wednesday and did my Cardio workup on Thursday. I will be getting my medi-port next Thursday and will start my chemo on July 28. What a nightmare this has been. I did not expect to be thrown into this after returning from a wonderful trip to France in June. It started with a recall to do an ultra sound then a biopsy then an MRI and now this.
It looks like you will be undergoing chemo before your surgery - like me. At first I was confused about this then I learned that doing chemo will shrink the tumors and stop any further spread thereby making surgery more successful. I pray that this is all behind me soon.
Good luck to us both.
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Welcome, Pat123. I've added you to our list above. Mark this thread as a favorite and visit often. Nothing like a dx of bc to ruin the afterglow of vacation, is there? I found my lump on the last day of a cruise. It's been downhill from there but I'm hanging in.
Well, seems it's begun. I didn't cut or shave mine but going to.
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Just wanted to check in this morning - I hope everyone is feeling ok.. Mags I am sorry the shedding has begun. I have pretty long hair and I will be cutting it this weekend to prepare... I am now on my 2nd day post Dense Dose AC chemo and am feeling ok.. I received my shot yesterday and the only SE I have felt so far were 2 times slight nausea which I ate crackers and it went away and feeling a little something in my chest bone, nothing that I can't handle but can feel something.. I have gone to work both days and am really able to maintain some normalcy for my son which makes me happy. I am hoping the following treatments are as forgiving. I decided not to take the ativan at all because that not only helps with sleep but it is prescribed for anxiety etc and I wasn't comfortable taking something like that when having to wake to check my juvenile diabetic son's sugar levels during the night. I am also experiencing a lot of hiccups for some reason lol... I wish everyone at least a moment or two of peaceful silence and a calm relaxing breath of fresh air today.
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Well, I had another meltdown last night... over watermelon...
I decided during the day that I was hungry for watermelon, well since I have lovely port installed I cannot lift over 10 lbs so I thought - no big deal, I'll just tell hubby and he will run to the store and get a watermelon... he comes home, I tell him, he says we will go get one in a bit... proceeds to get on the internet for an hour... I'm thinking- no big deal, he worked all day, let him unwind first... then he decides he is going to take a nap... what?! (Point I lost it)
If he had not been able to eat for a week and expressed a desire for something it was well within my power to get I would have dropped everything to go find it for him. A be right back kind of thing.
So, I say mean hurtful things, Decide I am leaving and dont even know where I am going and as I am walking out my door get a phone call from my mother...
This is not good either, she and my father are getting told off too... I had called her the day before to see if someone in my family could take me to one of my appointments next week as I have 4 next week. My sister in law has been taking me to all of my appointments, but has oral surgery on one of the days. My parents are retired they make their own schedules... scheduling a trip to Alaska the week I have my first chemo treatment so they were not even around... so her phone call was to let me know if they decided they could take me or not... they haven't called to see how I was doing, they did call once because they needed some information from me, but didnt even ask how I was doing...
If the situation were reversed, I would have said sure someone will take you, then figured it out between my family who would take me, I might have said I'd call back with the details, but never said well we will see if we can take you... and make me worry about if I will even have a ride...
After I had this meltdown I felt ridiculous... I'm arguing over watermelon...
I just don't know anymore...
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mags - thanks for the welcome and I'll be sharing. Just knowing that I'm not the only one terrified of chemo and it's SE is a comfort.
Jennifer - I want into BMX with DCIS only as well and to my surprise they found another area of 1.3 cm IDC and one of my sentinel nodes had multiple areas of micromets. I'm still on my initial 6 weeks medical leave and want to go back to work next month. My oncologist is supportive about my working during chemo but said everyone is different and take it one day at a time. Please keep sharing how chemo and work is working out for you.
Pat - I've been to France once and it was beautiful. My boyfriend and I booked a trip to Cancun 2 weeks before my diagnosis. We're supposed to go at the end of September but now that chemo is in my immediate future Cancun is delayed. I had a BMX on 6/24 and since then everything has changed. There was no evidence of IDC prior to surgery. Mammo, biopsy and MRI showed DCIS only. Pretty scary to know there was IDC hidden in there. Since we are on the same schedule we'll definitely have to share our experiences.
Carhy
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Dear no1b4makidz72 and Pat123, Just wanted to add our warm welcome to the BCO community. You have joined a supportive and knowledgeable group of others who ease the path for one another by offering information and compassion and understanding. Keep us posted about your upcoming chemo. We send you our best wishes. The Mods
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ladies I am back for check in. So much sh-t happening on these boards I don't know where to begin.
First, I' m on day 3 after AC regular dose. I think Emend is amazing because honestly after I take that and doxa I feel no nausea until 8 at night at which point I'm going to bed soon so I don't care. This morning I didn't even take them yet because I had an acupressure appt (which is great for relaxing me a bit oh and on another side note, you gals should try reflexology, which is total for massage on feet....AMAZING for relaxing) and the meds make me sleepy so once I have lunch I' m the last round. And I'm starving!!!! My appetite has gone up a notch. My mom is over and the home made ravioli and cannelloni and going down real smooth.can't say no that. Kale can come tonight!!!
For the new ones on board, I'm super nervous about needles, have to get a port in at some point, I even had a few sessions of hypnosis therapy and honestly the chemo 1st day was less traumatic than my CT scan. No needles hurt, no burning, no heart problems, no hyperventilating. So each person is diff and for someone who is SUPER anctious....if I can do it, anybody can.
Lunch is ready...will write back ASAP
DD
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Hey ChaosRains, don't feel bad. My meltdown last weekend was over food too. My cousin (age 77) lives with us and does all the shopping and most of the cooking. Last weekend I decided I would make a treat for DH. I make a cobbler that instead of pie crust has a dough crust that rises through the fruit and has a delicate crunch to it. We enjoyed a big helping, and I told both of them, do not cover it, because the crust will get soggy. Next morning I walk out in the kitchen and it's covered. DH said, I didn't want the cat to get in it. (The cat does not even go where it was.) I dished up a helping and sure enough it was soggy. "It's soggy," I said. DH blew up and took to his hidey-hole for the rest of the weekend. I told him, when this kind of thing happens, it makes me wonder why I'm even bothering with treatment. That's not fair, he said. I said, I know it's not fair, it's just how I feel and I'm just being straight with you. That one little remark I made ruined the weekend for all three of us.
Truth is, none of this is fair. But it is what it is.
Watermelon, cobbler, it's really not about the food, it's about us and what's going on inside, isn't it?
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mags, can I have some cobbler???? Sounds delish!!!!!!!!
I say we're allowed to be irritated. I have cancer. If I'm a little demanding so be it. Unfortunately not everybody sees it that way. At the beginning, I expected more from people and family, close friends. It's like i expected a closeness when it never existed just because I was diagnosed. When the truth is, just because I have cancer the world doesn't stop for everybody else. It doesn't even stop for me. If I expected such and such from this friend or wasn't very close to my sister, it could change after diagnosis but I shouldn't expect it too. And it hasn't changed. I don't get very much help from my sister or it doesn't come natural like to others so I have to spell it out for her, I'm disappointed and angry but I can't change it...I can change myself and I take what I can get from others that offer. People that I barely know. Thank G-d for my in-laws and bro-in-law.all these years of bitching and frankly without them I don' t know where my family and kids would be or how we candle this without them. And of course my mom. I should be helping her and here she is helping me. And damn this cancer....I want to be there for my kids who are 6 and 8 btw.
Anger....changed diagnosis.....
In nov I went for an US because I have dense breast and a mammo. They found a 3 cm fat thing to follow up on in 6 months. I had denseness on top of my nipple but surgeon said it felt like nothing...and pain is not associated with BC.
I was experiencing pain during a new Zumba class. In 4 months, the pain was increasing so went for early US, nipple was hurting. Nothing changed, everything felt fine. Asked for biopsy....have cancer!!!!
So following to surgery I told surgeon about dense tissue...he removed all of it which was cancer. So my 3 cm tumor became> 10cm and is still not all out. So I'm straight to chemo and then having a BMX afterwards since US detected nothing. I should have had an MRI,but I trusted technology.
I was super depressed in the past few weeks because of my situation. I'm glad I now have a plan and I'm attacking this f-chin cancer with chemo it dies. I have been spending a lot more time with kids who are responding to me much better especially my daughter who i think was starved for me time. I was always busy, working, need me time, angry . It is so much better now, who would have thought.
People get blown out of the sky, die in car crashes, have heart attacks out of the blue. I got cancer and now I have to do whatever I can do to live and deal with the cards that were dealt. What else am I going to do?
Have any of you tried professional help? Right now I' m just using them for the needles stuff, but will definately use them to deal with my feelings. It's also very hard for our husbands. For me, he buries himself in work. It's his escape. He has to deal with me and 2 kids. Whatever works. But if I ask for something, he'll do it eventually or I just pull the "but your wife...mother of your 2 children has cancer" card and that usually works. Guilt tripping..I don't care!!!!
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mom to Irish , that pic of u and ur daughter is just too sweet. Getting tears. She's beautiful and so happy.
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