Starting Chemo June 2014
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Hi everyone
We continue to go today by day and my wife's third treatment will be tomorrow.
I'm sorry for the side effects and hopefully soon enough will be done with this portion of our treatments.
When I say "our" you all know what I mean because clearly has we have said before the entire family is involved in this disease.
I really mean no disrespect.
As a physician myself, I have read most of the post and I do not wish to be intrusive in any way shape or form.
I have to say, that I noticed that clearly there a different ways to treat the same disease..
And what I mean is that I have spoken to the oncologist in detail and perhaps some of the side effects from the Adriamycin.
According to her, the use of a dream I sent in node negative triple negative disease is becoming less and less prevalent.
So perhaps some of you might ask your oncologist about whether or not that drug is completely necessary.
The matter-of-fact my wife's oncologist said specifically that some of the most recent studies show better results without the Adriamycin.
I really do not wish to intervene but it's always good to ask questions..
As a physician myself I am never upset when a patient questions some of their treatment wishes to better understand why they are being treated a certain way.
Just like I saw last week, that Nuelesta was being given to someone the day of the chemotherapy which I clearly understood that it should only be given 24 hours after the chemotherapy finishes.
So please excuse me for interjecting but I have been doing some research and the least I can do is try to convey this to Our group.
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home help, funny you should mention having this conversation with the MO, I just had this conversation with the PA this morning at my appt. for my particular situation AC iS the best option. I have already been thru TCH and obviously, it was not effective on me. The "big guns" is what everyone on my team believes what I need. Breast cancer is not one disease, but several, there are so many factors involved that it isn't clear cut and each factor needs to be taken into account when determining the appropriate course of action. Just because 2 people are triple positive, doesn't mean they need the same treatment, other factors need to be addresses.
Hope your wife's next treatment goes smoothly. I personally had a very difficult time with AC #3. Next week will be #4 for me and then I get to move onto the next phase.
Hope all of you are having a great day
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I had to put a shaved head picture up! I shaved it two weeks ago and on my 50th birthday, it started to fall out. You can see the start of little bare patches. I've had salt and pepper hair since my 20's and I stopped dying it when I got pregnant. It's darker in back. Had my 2nd big dose (TCH) yesterday and am feeling better today than I did on the 2nd day of my first dose. Staying on top of the SE's! My dad loves to bake so he keeps me going with the best bran muffins. One a day keeps life on an even keel! Hope everyone is doing well today...loved the suggestion about the lint roller!!! What a neat idea!
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Wow, hiking! I would have thought you were in your 30's...you look so young! Totally rocking the look...I personally am starting to look more like a plucked chicken!
I feel like my second AC has been a little rougher for fatigue & am still nauseated day 5...hoping to feel better soon.
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I wound up with a DVT in my arm. I just finished my second round of AC. Now I have to be in daily injections for the next 3 months
The clot is below my PICC line so it gets to stay for now.
My throat feels really dry too. Like I swallowed a frog.
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Has anyone lost all of their hair yet? Some of mine is still hanging in there. I go for my 3rd infusion tomorrow. Not looking forward to it at all. I'm counting down on the EC and hoping that the taxol is easier on me. I've had a really rough go of it. Anyone else doing DD taxol? Waiting to see how everyone handles it.
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island mama, what is DVT? Have you told your dr about your throat? Pick was getting mouth sores so they gave me MuGuard, it's a Rx mouthwash that you can swallow, it coats and numbs your mouth and throat. It's been a lifesaver for me.
Dixie, how many taxols are you going to get? I have one more AC on Monday and then I start my 12 weekly taxols. I've been told it is easier to handle. Hair is gone, have peach fuz
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agent99 - hope your hand is better, let us know how you are doing!
CanuckMom I also suffered with fatigue that got worse with each A/C. The nutritionist told me the magic pill was exercise, so I pushed hard to keep walking. I also started drinking one Ensure a day, I think it helped, but the fatigue is indescribable isn't it?
Dixie, I am also on dose dense AC/Taxol and had my first Taxol yesterday. The pharmacist told me to dump my anti-nausea meds (I was only taking Olanzapine at bedtime for 3 days, but it's pretty powerful and normally indicated as an anti-psychotic and made me shaky. I feel pretty good this am, but I did have major leg and foot cramp in the middle of the night, whoa. I will be eating bananas today! I think the medications tend to make me feel yucky so I am happy to dump everything but stool softeners, Advil and Zyrtec.
Started acupuncture Monday to manage my Neulasta pain, it was very interesting. Go again tomorrow as that's my usual intense pain day (day after shot) and muscle pain is indicated as a side effect of Taxol, so will add that to the mix. I've had acupuncture before for acute muscle strains, but this was way different and I could feel the connections inside my body between the needles, if this makes any sense. It's all a part of my cancer center and she's been working with onc patients for years, we'll see!
The pictures - you are all beautiful.
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bow -- good morning! Well the hands are the same, a hot red rash like a bad sunburn with blisters under the surface and on both my heels. The doctor says it's a side effect of chemo. Keep it moisturized not much else you can do. The good news is it hadn't gotten worse or spread so it's kinda like our hair you get used to it!
Is there anything you girls have figured out to do for the itchy bumps on the scap? My head is itching me like crazy.
I told my husband I a such a hot sexy mess I hope he doesn't run away! Dang!
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agent99, I used pure coconut oil on my head, it helped.
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Basia I will be doing 4 Taxol every 2 weeks.
Bow1965 I hope I can dump the anti-nausea meds I've been on them pretty much constantly.
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basia
A DVT is a blood clot or deep vein thrombosis. It occurs in a deep vein usually in the leg or arm. There is risk for it to travel to the lungs. However, I've been told the risk is quite low. Causes are cancer, chemo and central lines. There are a bunch of other risk factors like long flights and clotting disorders but the first three pertain to me.
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I've heard several of you complain about AC #3...I'm joining the club! I went on Tuesday. Got about half way through my emend (or whatever that anti-nausea drug is) and had intense pain in my arm all the way up from the IV. The nurse put a heat pack on my arm and It got me through the rest of the bag. The second anti-nausea drug went well. As the nurse pushed the first half of the red devil in, I developed hives up and down my arm. It hurt and itched. She injected my with hydrocortisone and it got me through the other half of A. The C went in fairly well.
Today was my Neulasta shot. The last two rounds I was pretty much flying and full of energy until Friday. Not this time. I'm beat already. All I want to do is sleep. Saturday and Sunday are usually my rough days. I can't imagine how I'll feel by then!
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K now I'm super freaking out about AC #3...still trying to get over AC #2. Fighting some depression & self pity along with my nausea, diahrrea & fatigue. Tingling in my hands & legs...afraid to drive a vehicle because I feel woozy all the time. OK, I'm done my rant.
Basia - hope you're feeling better now.
Get some rest Radical!
Island momma- scary, hope you recover from the DVT...will it resolve on its own?
Agent99. Sorry your hands aren't any better
Seems the more doses we get the more SE's everyone is having. Scared to keep going sometimes...I need a pep talk!
Love to all,
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Keep going! soon you will be halfway done and counting down to getting your life back to normal. Better than normal! I've been a little depressed too ....mine is coming from the fantasy I had about what my time in treatment would be like..... I believed all the nonsense about staying home and resting and taking care of myself. Well that sounded great! I thought I would be at home painting like I used to, reading books and watching old movies. Well we all have learned that's not what happens when you are home, you are trying to survive your current side effects. When I feel better I am so guilty about work, house and family I feel compelled to try to make up for the lost time. I spend so much time trying to convince all my friends and family that I'm ok so they will feel good about it that I don't get to acknowledge how tired and scared I am.
So I'm with you......BUT I also know these feelings won't last and I am blessed to be able to have a treatment for my cancer and I can't wait for my life to resume some sense of NORMAL!
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Agent99,
Great pep talk. I spent yesterday crying for no reason. After reading what you wrote, I think I understand it more. I'm miserable, but I don't want people to feel bad that I am. That good week off from chemo is filled with me visiting friends and family so they can see I'm ok. The bad week is pretty much just me and short visits by close friends who are kind but don't really need to see this part of treatment. It's a tough balance.
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Thank you Agent99, you are right. There is a light at the end of this tunnel. I'm with you Radical, I was emotional yesterday too...better now. We can do this!
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Hi all,
I have been in a fairly dark place feeling sorry for myself. I had my 3rd AC on the 10th and am still experiencing nausea. I take some Ativan but hate the spacey can't think feeling. Just having a rough go I guess. 1 more of the AC on the 24th then onto 4 Taxol for me. I lost most of my hair right before I got the 2nd treatment. I went ahead and shaved it off. By the way the lint roller is a great idea.
Can I complain some more.....??
Food tastes terrible. I do use plastic utensils always! water yuck! I am soooo tired of all of this. I wish I could be more upbeat but with treatments and trying to work, it is taking a toll.
Ok enough complaining...thank you for listening.
I hope you all are fairing better today.
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Mompy,
We're right here with you! I can't believe you're working through this! I just...Can't. If I get to shoprite and take a walk in one day on chemo week, it's a lot! I just keep trying to look forward to my off-season so I can squeeze in some fun.
It's so terrible going back for treatment just when I'm feeling like myself again. I know what you mean about wanting it all over!
Many have walked this road before us, and there is a Damon good reason we're doing it too. It will be over...Just not as soon as we'd like!
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its busy season at work. I work at an RV dealer. I can take rests whenever I need to, my boss is great. She just told me now that a trailer is plugged in and running if I want a rest. I keep working for the money and the insurance. I will take more time off during radiation as that is everyday for 5 weeks and I should start that in October when things slow down.
I did have a good cry on Tuesday, it kinda helps!
I do not do any of the cooking or cleaning at home or the shopping for that matter. I just go to work and then home. I have cut all outside activities. My DH is traveling next week for 3 days..it sucks but the money is good for onsite work and Lord knows we all could use the money right? The co-pays are overwhelming!!! He is self employed and works from an office in the house.
I really do not know what to expect on the Taxol and am almost afraid to look. I know everyone is different, some people fair better on the Taxol than AC.
I have found some good information on the April Chemo Group, they are all almost done so it is good to read their posts as they near the end and have survived this...well....Torture.
Good day all!!!
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Hi all it;s been a long time for me to post. Coming here at first scared me all everyone has is going thru. Today was a bit better reading everything you are all going thru. Makes me not feel so alone. The nurses tell me not to come here or read the stuff on the net, cuz I'm scaring myself. I have no job, not my own home we rent, I have no medical excep,t medical. I have a WONDERFUL Boyfriend of 6 years who PAYS for everything. I worry sometimes that I'm so sick, ugly and just a big ol sick dog for him to stick around. I don'yt have the energy to do anything. I do try and cook his meals everyday, and I try to do one house chore a day. If he were to leave I would be screwed, but so far he has been with me every step of the way. But with no boob, no hair, tired all the time, no job, no nothing to add right now I feel so low....okay I do have hope. I have A/C#4 on Aug 1st. Then I start on my 12 Taxols. My port feels a little sore and swollen they poke it every week to check my blood levels. Does everyone else go in weekly to get checked? Just so you ladies know A/C#3 was the same for me. So try not to worry to much. I am losing wieght so for me that is a plus. I really hope Taxol is easier. My worst side effects are not being able to sleep for the first 3-4 days and bone/muscle pain and then being really tired the whole 21/2 weeks after next infusion. And nausea.Okay ladies I'm off my griping , I'm sorry. I'm just so done with this. It's just so strange that something so toxic, so evil is going to make you better, but it does and it will... right ladies? HugZZZZ
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Just a quick update on dose dense Taxol, my first was on Tuesday. Definitely not as foggy and no nausea to speak of - I worked Tuesday afternoon from home, all day yesterday and partial day today. My Neulasta bone pain kicked in - not as bad as after round 3 of AC, I contribute that to Zyrtec and Advil (approved by my onc) - I just couldn't hang at the office all day. Not fatigued yet either, but that hit over the weekends with AC so will see. My leg hair is growing, and a bit on my head, so there's that!
Laura, it is hard to stay up through this...one more AC, now that's something to look forward to being over
I do not go to get blood work between, I did on the first round, but I've bouncing back pretty well, usually can feel my counts going up early in the week following chemo so I guess they don't find it necessary. This is the place to gripe for sure, never apologize!Mompv you are lucky to have such an understanding workplace, with beds too! Some days I shut my office door and curled up on the floor when the fatigue got deep! Eww.
Bow
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Girls, this is definitely NOT the glamorous pink disease they talk about on TV! Its hard, the reality of it all. We will get through this!!!!!!!!!! And if I didn't have this forum to express myself and talk to all of you I don't know what I would do!!! It has been a huge help to me!
So I think I would tell whoever said stay off this site to check it out for themselves, they might learn something!!0 -
Bow1965 thank you for the update on the taxol. I'm hoping I have an easier time with it. I had my 3rd infusion of EC yesterday and ended up very nauseated last night. I started on a new patch but it didn't seem to help. That was the first time I've gotten sick on infusion day but the nausea has been one of my worst enemies. Has anyone found anything that will get rid of the terrible taste in theirs mouths? Hang in there everyone we will get through this.
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is ice cream considered a fluid? Just checking
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Dixie, I've been told that tequila does the job. Barring that, I'm sucking on Popsicles.
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Mompv...ice cream is a fluid! In my book anyway!
Nola...not a big tequila fan, but Jameson and fireball work! Lol
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great!!! It is soothing on my throat! All I can say to is TGIF! One more day of work! Then rest rest rest all weekend!
I know I need to start walking. It's hard because I feel so weak and a bit unsteady all the time. Anyone else feeling this?
Have a good SE free day everyone
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does anyone else say "fine" if and when anyone asks how you are? Course I haven't had anyone ask lately except my DD's and DH. And when other people ask do they really want to know or just feel like they should ask. Or if they say call if you need anything are they really thinking please don't call cuz I don't really know what to do and don't want too think about it. Are you you surprised at who doesn't call when you really thought they cared about you?
Sorry just needed to get that out!
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Laurais50 - I'm in a similar boat you are work-wise. I'm a contractor - owner operator of a Home Maintenance and Repair business. I can't work so I don't have an income (at least not the type of work I normally do and the SE's keep the schedule off balance that clients don't want to book with me.) I'm also a single parent of a teenager and my ex lives out of state. I finally broke down and applied for social services and hospital assistance with copays and out of pocket expenses. Funny, we have been taught to save our money and, now that I've saved it, I don't qualify for many of the services available. They even included my daughter's part time job salary and her babyhood savings bonds in my "total" household income. Her bonds alone disqualified us from many services - can you believe it. The thought of assuming more debt to get through this makes me want to take another anti-nausea pill. All in all, though, I'm extremely well supported with friends and long-term clients - lots of emotional support and offers for dinners and transportation. I am certainly not alone but I'm the final decision maker here and I'm not always sure I'm steering this ship correctly. I'm also concerned about my future in my current business - I try not to let all of the uncertainly weigh me down.
Sounds like you folks on AC are having a rough time. My 2nd dose of TCH went MUCH better than the first. Strangely, I had to pee at least 7 times during my infusion - makes me wonder if I just flushed out my dose!! I'm telling you - it's like night and day. No aches, no "one step removed from life" feeling, very little nausea etc. My taste buds are gone again though. Those of you with leg cramps at night - try drinking a glass of water (gingerale is my new best friend) before you go to bed - you could be dehydrated.
I'm appreciative of everyone posting what's going on - it helps me to know I'm not alone and the tips and occasional giggle have been wonderful! Thinking of you all!
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