Starting Chemo June 2017
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Honey you cry all you want... see it as another way of getting the cancer out of your body ...
you have every right to get mad... every right to cry... and on some days feel sorry for yourself .. but just don't stay there ...
With me I go through couple of the " why me?" days ... feeling like life is over ... I can't do this... but then I dig deep ... and grab hold that is keeping me from fly apart... and it tells me " girl, you've been at your pity party long enough, now put your big girl panties on and get out there and fight"
and I do...
each one of us will find our own way to get out of our own sadness.. and back to living ... our lives will never be the same .. but that doesn't mean that it's going to be a bad life.. its what we make it ...
Hugs ..
Denise0 -
Ah Denise you're a real treasure!
I do see people now and wonder will they end up with cancer too? I hope not but odds are some will. And it's nothing that we've done or could have done.
Treatment #2 so far is going pretty much like that last. Massive headache, heartburn but still manageable. One treatment at a time!
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Oh MSLin I'm nervous for you too. The 4th one is your final AC correct? That could be something to look forward too. I hope and pray it's not as bad as you think.... We will get through this. ❤️ Take care and please let me know how you are doing
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Oh Susie,
I am so you... I have my second AC on Wednesday and have been so emotional lately it's crazy. I love being fiercely independent and having to ask my husband or anyone for anything is something I am struggling with. This is all so humbling. Good luck this week and please keep us all updated.
Big Hug from Wendy in C
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AC in the books for me. Round #4 was my last. No more Red Devil!!! So far things are going well. I napped a few times yesterday and slept in until 7:30 this morning. I'm slightly nervous because my husband left on a business trip to Louisiana this morning so my mom is coming to take care of me. That's fine because she's capable since she took care of my aunt while she was being treated for Lymphoma. She also takes care of my uncle who has COPD/Emphazema and Prostate cancer as well as my very aging grandfather. This will actually be a break for her.
I'm still hungry which is a good thing. Normally by this time I'm nauseous and have no appetite. I had an appt. with my MO the day before infusion and mentioned how rough #3 was. They prescribed Kytril in addition to the compazine and Ativan. I took it yesterday and it worked with only a slight headache.
Fingers crossed that this round isn't terrible. If it is I'm going to remind myself that it is ok to sleep. Sleeping is healing
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MsLin, Hooray for being doing with A&C! Glad you are doing so well! You look great, and you sound strong. WOOT WOOT. I go for round 3 this Friday. Felt great yesterday and today so far. Have a strong appetite for ribs, baked beans, cole slaw, Texas toast and chips, so DH is complying!
Looks like I have missed a lot of activity in just 2 days, but I am always glad to hear good news from others.
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hhuey, I'm hoping today is better for you. I have to say I was more tired after round 2 than 1. 3 is this Friday. I rebounded though, fully yesterday, so this week should be good. I, too, have had dry eyes. I wear contacts (take them out at night). Put in new ones (as they are changed biweekly) this morning, and the left one bugged me all morning at church. I'm in my glasses now. So, just one more thing...
Stay strong!!
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klt, WTG! Looks good. I had DH shave me bald Friday night. The crew cut was HURTING my scalp. I still have weird pings, but it's about 90% better. Honestly, I cried like a baby going slick with it. I was really fatigued that day, which through me for a loop, because I had not been the first full week after my first round. So, I think it was as much about being tired than letting the hair go completely. I mean, it was happening. Nothing could stop it. The messiness of it and the clogged shower drain was a nuisance. Doing that helped me feel in control, if only for this one thing.
I started wearing my hats. At church today, my choir of which I am a part, the members all came in hats to show their solidarity with me. What a special thing to do. Made me feel great. People have been so kind. I really do not feel alone in this battle.
Susie, I loved my hair too, mostly for my natural color. I am sorry it is so hard for you. It's ok that it is. We are all different. If you can try to remember, you are much more than your beautiful hair. Your DH knows that and that's why he says what he does. He loves you unconditionally. I guess for me it was just too much mess! It is going to be ok. Really, truly it is. We are all here with you handling the same issues, so please don't feel alone in this, but again, you don't have to like it or accept it or do it like some of us have. Do what you need on YOUR terms.
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Denise, FANTASTIC news about your tumor shrinking so quickly and dramatically! Amazing! You are definitely handling and responding well! Kick C's bootay!
I had the Neulasta on-body injector the 2nd round and did fine with it. Better than driving an hour each way the day after chemo for the shot. You won't have to do that too long. Plus as soon as it was over, I had DH remove within about 5 mins when I got the 3 beeps.
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Wow I feel as if all of you are getting through this A.C. much quicker than I am. My MO has me going every 3 weeks for 4 treatments. So this Friday i will have my 2nd treatment. I know it's easier on my body this way but I want it over quicker! Lost a lot of hair today and can definitely see the difference. After showering it looked like a kitten was trapped in the drain! I didn't cry as much as yesterday. Instead I looked at it and said goodbye cancer!
Question: since I get my chemo on Friday they have me coming back on Mondays for the neulasta. They said it has to be administered 24 to 72 hours after chemo. I asked the nurse about the auto injected one but she said I couldn't have it because my right arm had lymph nodes removed and my left arm has port. I'm going to ask again if it can be applied to my stomach. I thought I saw somewhere that someone had done that. I hate the thought of going back on monday. Last time what Should of taken a few minutes took over an hour waiting my turn.
2nd question: as all of you probably have experienced, once someone finds out you have cancer they tell you all their horror stories they know. Just like when you're pregnant everyone shares their stories whether you care or not. Well here's my point a older gentleman said he was told while on chemo he was not to eat at buffets or salad bars. I guess it kind of makes sense but i wasnt told this and guess what...yep I already ate from a salad bar. Any of you know about this? There really should be a standard of care book when you start chemo. Everyone needs the same information instead of learning things the hard way.
Last thing, I find myself be coming a germ freak. I even took my Purell antibacterial hand wash to church today. I thought it would be rude not to greet others but at the same time what a way to spread germs! Husband started calling me Howie Mandel!
Glad to hear most of you are in good spirits. All of you make my day brighter!
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Susie, my oncologist said I probably shouldn't eat out but yeah that's not happening. I was told I had to wash all fruits and veggies even those in bags from tne grocery store so I haven't eaten at a salad bar. I ate some soft frozen yogurt but then I read I shouldn't eat anything that comes from a machine like that so no more of that
My husband bought so much hand sanitizer but my hands are peeling from tne chemo and so many washings so I haven't used much of it. I do carry small bottles when I'm out or if I handle any $.
I get the nuelsta shot auto thing on my stomach. They put it on after my chemo treatment is finished and it goes off 27 hours later. My treatment plan is every 3 weeks, 6 times. I'm so envious of you with 4! My tumor is no longer palpable after 2 treatments but my husband says they will not stop tne treatment that I have to do 6
Next Friday I'll be halfway through so that's a good thing
Funny thing about hair, mine was 95% gone but I didn't shave it. My hair was 4"long originally but I still have a ring all around tne outside so the can wear baseball caps and it looks ok. Also my hair on my legs is still there and I have to shave!
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My MO just told me to not eat raw fruit and vegetables on the days my resistance is low, like days 7-10. And I don't cook much, so I've definitely been eating out.
My Neulasta pod is on my stomach as well. I will say that when I looked at the EOB for the first chemo, the Neulasta pod was $14,000. I'm 2 hours away, and have Medicare and a supplement that pays everything, but if I was paying out of pocket that would be a killer. It would be interesting to know how much the shot is.
Day 10 for me after TC#3. Couldn't taste salt last week, and catsup was gross again, but that seems to have gone away as of today, thank goodness. One more to go, and then exchange surgery sometime in the future
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LTWJ my A.C. is just 4 treatments then I start the Taxol for 12 weeks, every Friday. So all together my chemo will be 6 months. Is that what you are doing as well?
As for the fruits, I would be screwed if I couldn't eat those because that's what I live on. I eat lots of seafood as well. I have celiac so I cannot eat most foods that calm the queasy stomach like crackers and bread. Yes, they make gluten free but you might as well eat the box they came in for more flavor.
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Susie - I wore the neulasta onpro on my arm - same side as my port with no issues. Your stomach is an option as well. I was always asked where I wanted it placed. My son also had cancer and Yes - we were told when he was neutropenic (especially when ANC is less than 500) he could not eat fresh fruits and veggies. When I started chemo, nobody mentioned that to me - so I asked my nurse. She said they are not as strict as they once were, but that I needed to be careful. My ANC never went below 500 - my sons would go to Zero. She said to wash fruits and veggies well, etc. So, at least where I am treated - they don't say you can't - just say be careful. I did not go to restraunts, church, groceries, etc. when my counts were low - I did chemo during flu season and was very cautious. I did go through some drive thrus. Once my counts were back to normal - I ate out whatever I wanted and went wherever I wanted. Check with you place of treatment. As we all have learned - no place treats the same or tells patients the same thing. Frustrating. I start radiation tomorrow and same thing - seems they all suggest different deodarants, creams etc. And all are expensive so how is one to know what will work for them???
Hugs all around - I promise this will all be behind you soon!
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Kim... I was very happy and my MO said it was EXCELLENT results.. it means its working on my known tumor and if anything that got out in my body...
I will take it as a win .. ... kicking cancer out!
Today has been a down down day ... Day 2 after chemo.. just blahhhhhhhhhhhhhhhhhhhhhhhhhhhh0 -
ML are you going to Vandy??? Did you bring your kids to the chemo class?
Denise0 -
Susie - I wore the neulasta onpro on my arm - same side as my port with no issues. Your stomach is an option as well. I was always asked where I wanted it placed. My son also had cancer and Yes - we were told when he was neutropenic (especially when ANC is less than 500) he could not eat fresh fruits and veggies. When I started chemo, nobody mentioned that to me - so I asked my nurse. She said they are not as strict as they once were, but that I needed to be careful. My ANC never went below 500 - my sons would go to Zero. She said to wash fruits and veggies well, etc. So, at least where I am treated - they don't say you can't - just say be careful. I did not go to restraunts, church, groceries, etc. when my counts were low - I did chemo during flu season and was very cautious. I did go through some drive thrus. Once my counts were back to normal - I ate out whatever I wanted and went wherever I wanted. Check with you place of treatment. As we all have learned - no place treats the same or tells patients the same thing. Frustrating. I start radiation tomorrow and same thing - seems they all suggest different deodorants, creams etc. And all are expensive so how is one to know what will work for them???
You are NOT a germ freak - always have hand sanitizer with you
! I kept antibacterial wipes as well and would wipe down tables, movie chairs etc. . You don't want to get sick and delay any treatments. when my son was in treatment - I made my other children strip in the garage after school before coming in and head straight to the shower . I didn't have the energy to do that with them for myself ha! Hugs all around - I promise this will all be behind you soon!
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Susie I had my Neulasta device on my midriff off to one side a bit so it didn't stick out in front of me. Worked great. You are doing so great! Keep on keeping on.
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Susie.. I was told no salad bars or buffet ... not until after the chemo..
Fruit and veggies wash wash wash... even the stuff that's been pre washed...
Denise0 -
Susie, I'm getting docetaxel,carboplatin,herceptin and perjeta now 6x every 3 weeks. Then every 3 weeks after that just the targeted hercepten and perjeta. For a year
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Denise - my son was treated at Vandy, but I am at TN Oncology. we are frequent fliers at Monroe Carell
. Are you at Vandy? 0 -
I carry wipes and my little anti bac bottle thingy that hangs off my purse.... I wipe and use my anti bac stuff all the time while I'm out....
I rather be over causious than not0 -
LTWJ Wow a whole year! I should stop complaining about 6 months!
Thanks for all the kind words.
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Susie, Agreed that I had heard to be careful eating veggies out due to washing standards not being up to par per se. I forgot yesterday and had a salad out. We have eaten the majority of meals at home, though, since my chemo began. Yes, the drain was crazy after several days -- before I cut it and even at one inch. I felt obligated not to clog the village's main water lines.
I had Neulasta on the stomach last time and it worked great.
I am constantly washing my hands, though that is not new for me. I am also insisting my husband wash his hands all the time. His germs could be mine. I use hand sanitizer several times in the car. Who wants to find out the hard way, right? In the Episcopal church, we shake hands during the peace. I am literally doing peace signs in the air. I think everyone gets it now. They weren't sure what I was doing last week, but it was crystal clear today. I am also not sharing from the same cup of wine. I am taking the bread but forgoing the wine until I am through all of this. I guess we can't be too careful. I will say, though, when my first husband was on monthly oral chemo for a year, he was able to go back and teach elementary school. I mean, being around children would seem to be the worst thing you could possibly do, right? He did not catch one cold or have any other issues related to his immune system during that time. But to me, all chemos are not created equally, and I would assume a chemo for brain cancer is just as potent as what we have, but who knows?!
Glad it is getting easier with your hair.
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Yes..I go to the 100 Oaks for my infusions...
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Yep ..its a year for us HERS2 .... I've got until next June.. ... Like my NP said ...its a marathon with Triple positive not a sprint ... blah
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Had chemo #2 yesterday. Doing okay so far. More tired than the first time. This time around I'm taking it easy for the first few days. Not like last time where I was doing way too much the first three days, running around. Started the Tylenol for the headache as soon as I got home and have taken Zantac for the heartburn right from the start. Last time I could barely swallow the heartburn was so bad. By the time we figure out what to do with all the side effects the chemo will be over.
My leg and armpit hair have seemed to stop growing. Strange because I was told the only hair that would fall out would be head, eye lashes and eyebrows. I only have little wisps of hair left on my head which I expect will soon fall out. Still have the eyelashes but then I've never really had great lashes to begin with. If they fall out I probably wouldn't notice.
I sure don't envy you girls that have treatments for six months to a year. You'll be in my prayers and thoughts for sure each night.
I find it difficult to remember to be careful with bacteria and germs because even though the WBC is low I don't feel any different. It's the simplest things I do every day without even thinking. Now I find myself having to be more careful about the silliest things. My chemo instructions were to get out, don't isolate yourself but be careful. Make sure you wash you hands or use hand sanitizer. Stay away from sick people!
Don't give up before the miracle happens!
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My instructions were much the same as Pink's. Live life as you can and avoid sick people. My MO was fine with me working as long as I was careful around sick students. I made one stand 10' away from me one day. I've been eating out, eating fresh fruits and veggies (washing them first) and my WBC was 10.17 before AC#3 this week. The neulasta works!
I get my neulasta on the same day as the chemo. My MO said that in order to get it approved for the original chemo/cancer regiment it was delayed. The thought behind it is that the chemo is supposed to kill off the fast growing cells, but if you give neulasta right away it rebuilds cells. However, in trials post neulasta approval they find there is no difference. Therefore it is ok to be given the same day. The shot itself (according to my EOB) is $10,000 each time.
Day 4 and so far so good for me. The new anti-nausea med is working much better. I've been hungry all day and eaten all kinds of random foods. Key lime frozen cake, guacamole, grilled cheese, bagel, cherries, granola. Whatever sounds good. The fatigue has set in a bit and I napped twice today. I'm hoping I have a little energy tomorrow to go up to my greenhouses at school to check on plants.
Keep on kicking butt ladies. You are all amazing
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Pink, Way to go. I, too, was more tired after round 2. It occurred to me last night that I did something differently during the process of the chemo being infused in round 2. I only had one hard candy. My BFF was with me, so we were joking and having fun (as best you can), but during my 1st treatment, I kept the candies in my mouth. Interestingly, I had MUCH more serious taste issues after round 2. Could have no bearing, but you bet I am going to load up again this time. I will be curious if it makes a difference.
MsLin, My insurance was billed $18,000 for my Neulasta (of course much of that was written off), but it is serious stuff. It made my WBC go higher than prior to the chemo! Here's what I was reminded last time when I start Taxol after these next two rounds of A&C. I will be doing it weekly (with no Neulasta), so my body won't have the same amount of time to rebound. My nurse said this is where you typically get offtrack. I don't want to do that. I want to stay the course, but if you have to wait you have to wait. I will deal with that when it comes, but I won't be happy if things are delayed...I want to make holiday plans.
HapB, I wanted to address your post at least a couple of days ago. Made me sad to read about you being alone in this (post divorce) with all you've had to endure. All I can say is I am sorry. I cannot imagine not having my DH see me through this. I wish things were different for you, and it just shows how amazingly strong a person you are that you can and will brave through yet another cancer. May you be able to look at yourself in a way where you can hold your head high, knowing you are doing what most people couldn't. Because of this, when all this is behind you, you will be able to be strength to someone else who may face a difficult journey alone. We are here for you.
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After my first round my neutrophils dropped to 0 a week later,so I got the neulesta the 2nd round and my numbers were normal a week later. Crazy expensive but it worked. They didn't warn me of any side effects except the throbbing pain which I only had 2x and Tylenol took care of it
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