Starting Chemo September 2015; join us!
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4/4 AC - complete! *happy dance* But MAN do I feel groggy this morning. I even broke into the diet coke (thank you, prilosec!!!) I can't even begin to imagine how tough this is going to be when they pump Benadryl in with the Taxol. So satisfying to rip off the 4th infusion ticket from my countdown. And because stores around here are insane... let the season begin.
On the 4th day of chemo, my MO gave to me...
4 Nausea meds
3 Shots A
2 Saline bags
And Cytoxan with some steroids!!!0 -
HI guys,
I'm at my chemo session all hooked up and trying to get some work done. Thought I'd check in with you all.
Southern - I'm so sorry for your loss!
Gray - My MO said the same thing. If you are having neoadjuvent chemo (before surgery), they do an MRI or PET scan at the end of chemo to compare the before and after. This is also helpful to them making decisions about the surgery you will have.
Aga - yes, report that to your MO's office. They can make adjustments so you never have to go through that again.
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I'm sorry. I don't know if it is the steroids or not but I really don't want an extra year of pain from this crap of chemo. I just don't think all this pain and suffering is worth it. I went for my neulasta shot and it all became clear. I hate this and I'm not doing this anymore. My MO called me, "Just another statistic" and I said "Lost to follow- up" as I left his office. I am sure you have MOs and nurses that care about you but I don't. I have told them how I feel and they don't care and so neither do I. I'll be watching from afar but since I am not doing anymore chemo I won't say anything anymore.
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Edwsmom & dlcygnet good to hear from you both. I was just wondering some of us were who haven't posted in a few days.
Yay Lisa for being done AC. For us hopefully taxol will be easier.
CarolinaAmy hope you are ok and we miss you. Aggiemegs you also.
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Grey, I'm not sure I understand. Your MO can't be the only game in town. Why not switch doctors if you're having a tough experience? Like with dating, you need to have good chemistry with your doctor. It's a tough enough road to go down. I've been counting down the days of this year of treatment too.
I will say this, for me, I'm more afraid of the pain that will come from dying from cancer than from getting through this one year and going on living my life. I hope you can separate the stress and pain from the treatment and see the bigger picture about the life you will have after treatment (vs. what it will be like without treatment). I know its hard. Hugs!
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DLcygnet - HUGE congratulations on completing A/C 4/4!! You encourage me - mine is next Tuesday.
I laughed out loud and sang your holiday chemo song to my husband. Thank you.
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Minnesotalisa we will party with you next week also.
Grey hang in there
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grey hope you stay the course and finish your treatment.
I also look at it as one year of getting well then hopefully lots of years of a full life ahead.r
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Grey - we are on our 3rd Oncologist, I'd switch if they cannot make it comfortable for you like edwsmom recommended.
Southern - I'm sorry for your loss.
DLcygnet - i like your new song
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Oh Grey please at least stay in this group and post if it helps you in any way! Maybe like others have said the best answer is find a kinder MO. The SEs this round have been so much worse, I've also half-thought about just giving up --- but I could never do that to my kids. Have to keep reminding myself all this is "only" temporary, and all the misery the chemo is wrecking on my body, it's also wrecking on the cancer cells in my body. So they're taking a heck of a beating this week, too. Whatever decision you finally make, we're here to support you, so please stay!
Southern: so sorry for your loss ((((((hugs)))))))
I'm a wreck from not sleeping from being too stubborn (afraid, actually) to take the turbo pain meds for the bad pains from the lymphedema from the bad post-op instructions from the stupid surgical unit. Was awake until 5AM; my sobbing woke husband, who bought me the meds and insisted I take them --- I did, slept almost 7 hrs, just lay around all day like a lump, and am just about o turn the light off now (8PM) because I took anoher dose and my body just wants to sleep. So I will try. Good night all, and may tomorrow be an easier day for you
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Grey wrote
"My MO said something that upset me and has me in a hole I really can't see out of. When I asked him how he would know if the chemo ( and all the hell I am going through) worked, he said that I just have wait and see if I get a recurrence. If no recurrence, then the chemo worked. I know there is no certainties in life but I would have expected a little more science then just waiting for the other shoe to drop. It just depresses me. It makes me feel very alone. "
I am giving everything in my soul to be positive but I feel deeply the same way as you are expressing. that being said Grey I hope you can find another doctor. I wasn't going to share this but last week I lost a Chemo Buddy to breast cancer. She and I met at a support group and we texted each other through appts and supported each other on Chemo days. It was the bright spot in my treatment and she made me promise that "we would always stay positive". We have been friends 6 months through this. Sadly and unexpectedly she took a turn downturn and I went to the hospital to see her. Before any of us knew it something happened and she was gone. It shook me hard. It rattled my faith in my treatment, in my doctors and in myself and my existance.
This ran me into the ground but I promised her I would "carry on" This is the dark sometimes in the night but the dawn will come. We just need to persevere, lean on one another, listen to music that cheers us up and focus with singular strenth on digging inside ourselves to presss on to victory. We face our demonds and we face those sweet angelic moments in our lives where we know we have meaning and this is a fight worth fighting.
We can do this.
Now I have to go meme up this thread.
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exercise_guru, I'm just weighing in on Perjeta (I'm active on the August chemo board but follow this one from time to time). . . Perjeta is only approved for neoadjuvant treatment OR for 1) tumors greater than 2cm or 2) multifocal tumors. For example, I'm getting adjuvant Perjeta with TCH, but I had two tumors, and one was 2.3 cm.
I hope that helps. In the meantime, September ladies, keep on keepin' on! My apologies for the intrusion.
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Southern- so sorry for your loss!
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Day 5 to Day 8 post #4 AC was brutal but this beautiful girl stayed with me through it all and I'm starting to feel human again. Helps to have something soft to cuddle. To everyone, hang on too. I'm over the hump and have 4 DD Taxol to get through still. This is the hardest thing I have ever done.
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hi I come to the site occasionally because I did not know about it until lately. Already odds winner has helped me out with answers and encouragement I stsrted chemo in July 2015 and my MO must be special or different he chose taxol for me first 12 infusions one week apart fortunately for me I took a regimen of b vitamins and l- glutamine during the treatments to help prevent the peripheral neuropathy I took b6 a b complex folic acid and L- glutamine twice a day I really got paranoid about missing a dose of the vitamins and carried them with me everywhere I took s multi vitamin preferably at bedtime and vitamin D not alot of vit c I occasionnaly would miss a dose of the vitamins anyhow from my tiredness nausea and vomiting
Overall I think I had a good outcome I missed my last taxol and my MO lowered my taxol dose for the last 3 infusions because I complained about losing sensation in the bottom of my feet. Well I think the l- glutamine and B regimen did spare my hands
On ther other side I read an article about poorer outcomes relative to lower dose taxol and skipping doses so it is a hard choice but I think it was for the best
Anyone know about Vitamin C infusions my friend told me to ask for butmy MO said no even if I offered to pay myself
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any advice on managing through AC? I got my first AC Tuesday October 21 and just got admitted to the hospital 1 week later on Tuesday I did not know what was wrong
After taxol, I did expect side effects to be bad but the answer when I asked my MO was extra stupid everybody is different I really resent that answer preferable to some one asking for information. A better answer would be a range or spectrum diagram of possible dose effects with % likely to have that symptom due to side effect. So,that way you could know what is "normal" compared to what is trouble.
If some knows of something like that it would be great.
On the other hand, we could try to accumulate spectrum or range of symptom side effects from the group blog from the different months to help future gals.
Any thoughts? Too ambitious or against the rules ? that are supposed to protect us from our own medical records for privacy sake
While I am on this topic is anyone else pied off by Myriad Genetics failure to share their de identified genetics database ?
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I don't want anyone to feel bad because of me. I have said from the beginning that my situation is an extreme situation. I have always said that I have never liked my treatment team and don't trust my MO. That I am just a number on a chart doesn't surprise me- coming from his mouth - it hurts. People have children, friends and husbands (good and bad) in addition to themselves to feel like they have to live for. My friends and ex-boyfriend have left me because of this disease, my family waits for my death and I have more financial trouble than someone should be allowed to have. On the balance sheet of life, I am in bankruptcy. I choose, therefore to be an observer not a participant. I do not want others to feel my pain so I am here but will not participate. You should all have hope, which I lack because I don't have anything to want to go through this suffering for or with. So I am with you in spirit for as long as I choose.
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Grey, please try to find a way to hang in there and not be discouraged. This is the toughest thing most of us have ever dealt with. Can you try to locate a more compassionate MO?
Southern, so sorry for your loss. She was much too young!
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CountryFrenchRose - You can read back through the posts to skim out everyone's excellent A/C chemo advice. (Time-consuming, but worth it!)
I am "three down, one to go" with A/C. Coping techniques that have worked for me:
- Drink water like you're in the Sahara, even if it doesn't taste nice (it probably won't). I track my daily number of glasses using hash marks on a sticky taped to my plastic water bottle to keep myself honest.
- Exercise if you can. Some days it's tough. Walking (even at a leisurely pace) for 30 minutes per day can help.
- Eat lots of fiber to counteract chemo constipation. Find high fiber foods you tolerate well and force yourself to eat them. (I also drink psyllium in water daily. Yucky but it helps a lot.)
- Weigh in daily. I have been startled to lose weight even when eating regularly. Food will often not taste great. So if something appeals to your appetite, eat it!
Congrats on getting A/C #1 "in the books"! You can be my Taxol coach when I start. ; )
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Found this and it made me laugh. Thought I'd share.
Are You My Chemo?
I do not like this chemo crap.
I do not want to wear a cap.
I do not want an IV drip.
No Carboplatin, not one sip.
I do not like my face with rashes.
I liked my lids when they had lashes.
I did not want to lose my hair.
And yes, I've lost it everywhere.
Now, nothing seems to be much fun
When to the bathroom I must run.
I cannot taste what's on my plate.
You'd think that I could lose some weight.
But these steroids, it must be noted
Just cause me to feel big and bloated.
I realize that "this, too, shall pass"
I'll bet I get to keep my a**.
And I'm sure it's a foregone conclusion:
I do not want my next infusion.
But I must go, I can't postpone.
So with this poem, I'll bitch and moan.
And friends, indulge me with this blog,
And excuse my writing chemo-fog.
To end this here, I have to say; there is not any better way:
I do not like this thing called cancer.
Next time it calls, I will not answer.0 -
southern Charm, I am very sorry for your loss. Please remember to care for yourself as you support your husband and his family
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Southern, I'm so sorry for your loss. Please remember to take care of yourself during this incredibly hard time.
Tessu: yay for sleep! I hope you wake up feeling better.
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Hi everyone, just wanted to check in and say I had my fourth and final round today. Best of all, my PICC line is gone gone gone
Hang in there ladies! Feels just like yesterday we were debating chemo or no chemo...now it's done. Onto the next hurdle.
Hazel_nut
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Southern Charm
Condolences to both you and your dear hubs. May God bless your dear mother in law and keep her. Prayers for you to feel well to get thru this.
Rosieo
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congrats hazelnut. It will be awhile for some of us to get to the finish line with this chemo crap but we will def get there with you.
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Lindy love your snuggle buddy. My final AC wiped me too.
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yay hazelnut! I'm right behind you. My last I s is on Monday
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southerncharm- so sorry for your loss.
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Dear Minnesota LisaFR
Thank you for the list of advice to get through AC. Your water tracking sound like a good idea. I really never drink enuf water. The AC caught me off guard because the Taxol side effects were very different. I guess my MO has a reason for doing Taxol first but I do not know what it is. So now I am in the hospital since 10/21/2015 because my WBC dropped to 1.4. I had no idea what was wrong but I never felt so sick as Tuesday nite when I called a cab and got to ER.
PS I worked all day but making it from 3 to 5 pm was ruff they watch my hours at work very carefully even tho I am not an hourly employee . The woman that I work with said I really should just not leave early. So I made it to 5 pm. I got home and the heat was not on so I called a plumber and he came over to drain he radiators at 8 pm. I am very blessed to have a home with 10 radiators very old house and 3 floors so I was jubilant when I found the radiator keys. I was the plumbers helper at the radiators on the first floor I found A couch to lay down kept track of the key every time he would put it down and made sure we knew where the spare key was during the whole process I kept having to lay down
Finished up and downstairs quite a few times with the plumber. No pain plumber left.
I went to bed and the pain and shakes started. I had throbbing pain in my kidneys and shoting pain in my body legs hands arms and could not stop moaning an d crying. My 99 year old mom thought I was exaggerating.
Called a cab hot to ER could not stand up at the ER desk.
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