April/May 2012 Chemo hang out
Comments
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Melrose , not feeling too bad, kind of worn out...had a reaction to something - so had to take benilyn but seem ok now, just fuzzy headed too...and no energy. Is it the Neulasta that is very expensive, because there is a shortage of it?
Hope you are having a good day.
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Hi guys! Checking in. Wedding last night went well. I was only doing a photobooth there, not shooting the whole thing. So, I got to sit inside in the air. We were getting ready to leave and I started looking for a scarf. My partner said, 'why do you need that? You never wear anything any other time. All it does is make you hotter" And I thought, ya know what, he's right. When I fell last week it came off and I used it around my neck with cold water to keep me cool. So, I was bald at that wedding. Why do I feel the need to wear it to a wedding? This is me. Bald. So, I went to the wedding bald.
Getting ready now for an engagement shoot. It will be at sundown, but I'll probably wear a scarf, just to keep the sun off my head.
Fierro, love the pic!
Lisa, I have not been able to taste anything for about 2 months now. Just starting to get my tastebuds back. Yay! No clue what the taxol will do to them tomorrow.
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Ellendou- The Neulasta shot is just expensive. I don't think there is a shortage of it but don't know for sure what drives up the cost. There is an alternative to Neulasta---- Neuprogen which is given daily for several days after the chemo. I really don't know much about that drug. Go to chemocare.com and look up chemotherapy drugs.
Keep eating small meals and resting and drinking plenty of water. Hopefully you will feel better soon!!!!
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Thank you everyone for your condolences and hugs for the loss of my sweet Chewy, kjiberty the areas of pain that you mentioned are the exact areas I am having my pain! No where else but those places, so that is something to be thankful for
. I did take my Claritin the morning of shot and still taking it per Onc's instructions, also having to take some prescription pain meds to stay comfortable. I can say this, I will never take my body for granted again! I have never in my life been so in tune as i am now, with the marvel that is the human body! Amazing!! Peace to you all.... -
Sandik- bald is beautiful!
Ladies- there are no wimps here whether working from an office or from home or to fight cancer right?
Melrose- I am thinking that maybe I would rather do preventive antibiotics than have that shot with its side effects if that is an option.
I have not been as careful as you guys but I plan on becoming a good OCD girl over germs!
Both at home and the office.I have decided to ice nails and toenails this time so thanks for the tips Mel.
On another note--do any of you get pedi/manis still?
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I got a pedicure before I went for my first treatment = and was told to have my nailpolish off the next time I came....but my feet do feel good. I was also told not to have any until I am finsihed in case of infection.....don't know if it is like that everywhere.
They do ice our nails and toenails when we go -- they have big frozen mitts and footwear to put on where we are having the taxotere treatment.
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Melrose: Do you think if I did NOT ice my nails the first three treatments and try the fourth and final time, it will make a difference? Or am I too late? I suffered from severe frostbite and my fingertips are very sensitive to cold (like I can't even take something out of the freezer without being in pain), so I don't know if it's worth a try for the final round. Your thoughts or anyone else's, please?
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jenny~ I think it depends on how familiar you are with your nail person. I have been getting mani's/pedi's from the same woman for years. She has never cut me (accidentily or on purpose) and I feel very confident that she never will. That said, I continue to get mani/pedi's although they advise against it. If you get cut they can always prescribe a prophylactic antibiotic, right? I think we have much bigger worries than being cut by a nail tech.
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kjliberty- I do know someone who did not ice with 6 rounds of our chemo regimen. At the 5th round, she is noticing lifting. Now she wishes she iced. But I've also read where some women didn't ice and didn't have any problems. I've also read that some women did not ice and initially did not have any lifting or problems with the nails but months later, they are having problems. Icing is no guarantee that the nails won't show some side effect from the chemo. I'm not sure if I would ice if I had suffered frostbite before and still have problems when taking things out of the freezer. You may want to ice the toes if those haven't had any frostbite. Can't really say if going through the effort is going to make any difference. I have pretty thick strong nails to begin with and haven't noticed the fingernails being brittle. I know you have been taking pretty good care of yours. Just not sure and wouldn't want to risk further nerve damage that you already have from the frostbite.
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For those of you on the TC regimen, I'm wondering how your MO determined whether or not you would 4 or 6 doses. When my small positive lymph node was discovered (2.2mm) post surgery via my full pathology review , my MO indicated I would need 6 sessions. However, I had a really difficult first infusion (ended up with a C. Diff infection that landed me in the ICU), so he ordered the Oncotype DX score on me after that initial infusion to make sure I was benefitting from chemo. It came back as an 18. I'm definitely in the grey area in a lot of respects, and will be doing radiation after I complete chemo.
He's now indicated that based on eveything he knows about my tumor, including my DX score, he's comfortable stopping after 4 sessions. I've completed 3 so far so he's leaving the decision up to me.
Just wondering what criteria really "pushes" you into needing the additional 2 sessions. He's indicated there really isn't a lot of good data out there, and a lot of the decision is based on judgment for that particular individual.
Trust me, I'm very tempted to stop after my next session, but figure I have one chance and don't want to take the easy way out if there really is some residual benefit to "going the distance".
For those of you doing 6 doses, what is it about your particular tumor that is supporting the need for 6 vs. 4 chemo sessions?
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Raelan- I'm having 6 rounds of Taxotere/Cytoxan. I'm participating in the Herceptin-B-47 clinical trial which has 6 rounds of chemo as its chemo protocal. I also knew that before I volunteered for the clinical trial that I would probably have 6 rounds. I think it is mainly because of the grade of my BC. Both the IDC and DCIS were Grade 3 and my Ki-67 score was in the high range meaning very active and aggressive cells. The weird aspect about my cancer is that it was found encapsulated in a cystic structure. None of the 5 nodes looked at during the SNL showed any cancer cells. I have had minimal side effects with our chemo regimen and I guess I'd be willing to go the 6 rounds. I'm on a T/C thread and there are a few women who were wondering why they weren't getting 6 rounds and are hoping that the 4 is enough. I still don't know if I'm having rads yet since that is yet to be determined by the tumor board.
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jennyrjd, you need to know more than your white cell count. You also need to know the % of granulocytes/neutrophils. If you have a copy of your lab report and can tell me those two numbers, I can tell you how ANC is calculated and what it means in terms of infection risk.
rgina - that makes absolute sense for our regimen (taxotere plus carbo plus H). I found on one website that the combo of the 3 leads to greatest nadir days 7 to 10. That does match up with my bloodwork results (most of my cycles except this last one which started earlier than expected - day 5). And you are correct that Carbo continues hitting all the way through day 21 - but I think the hardest hit must be the days 7 to 10. Even so, I believe this is why my counts dropped again just prior to my 3rd cycle (with thrush of course), and I needed a few neupogens day 19 and 20 to be ready for chemo day 21. It is cumulative and keeps kicking it down, so be more careful as the rounds continue on...that's the lesson I've learned!
And yes the C can be Cytoxan or Carbo, depends on which one your doc decides upon. The clinical trials for TCH for HER2+ disease were done with Carboplatin.
The C in AC and TC (without H) is usually Cytoxan, I think. I've not seen anyone else get Carbo unless they are HER2+, but that doesn't mean it doesn't happen.
Lisa - I'm day 11 PFC and STILL having problems with heartburn (yes, all, it's actually gotten WORSE the past 3 days...back on the Carafate). So I'll whine right there with you - everyone here understands!!! Waaaah!!!
Oh and DH neglected to tell me he has to travel AGAIN this entire upcoming week. He was gone all last week, too. I burst into tears. I'm OK now, but man, what a disappointment. He even went with me to the store today, and we bought all kinds of food that I can't possibly eat by myself. What the heck? Why wouldn't he say something then? MEN. LOL. I love him dearly, but wow...why did you let me buy 2 # of grapes, 1 # of strawberries, and 4 peaches for a fruit salad I wanted to make for us??? Huh??? I'm gonna have to take it in as a gift to the MO's office or else it will go bad. No way I can get through it all!
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dancetrancer- Wished I lived closer to you b/c I'd keep you company and have a foodfest!!!! You can always freeze part of the fruit to make smoothies later. HUGS!!!!
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Hey chapter4 & anyone else doing taxol. #2 was much better at least I didn't end up in the hospital for the weekend. Dr decreased my steroids from 40 mg to 20mg at infusion. No shakes & handled better. I also did not need a neulasta shot. I ached more this time by my hips/back of rib cage. Very tired & worn out easily. Taking a shower took all my energy. Feeling a little better but still tired. Just keep thinking 30 days from now I will be recovering from my last infusion.......keep holding on to that thought. I also have had thrush from the beginning. Managaing w biotene, salt rinse & brushing the tongue. Hope everyone else is managing well, this too shall pass.
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kjiberty - I think Melrose gave you excellent advice...if I had prior frostbite and that much extreme sensitivity to cold, not so sure I'd risk trying to ice. Hoping you skate by without any nail issues!
raelan - I was advised 6 but decided to stop at 4 b/c of how hard chemo has been on me and not wanting to risk worse side effects as I go on. Also, tx for my size tumor is controversial - many onc's would say no chemo at all. So, I figured since I'm in a gray area anyways, 4 is enough. Plus, I am getting Herceptin for year afterwards, so that helped me make that decision - feel like I'm getting good protection. There is a study of 4 vs 6 - looked at AC and Taxol, I believe, not TC, but you may find it helpful. Do keep in mind this is just one study...no promises here. There are risks either way, ya know? Here's the link:
Breast Cancer: Four Cycles of Adjuvant Chemo Sufficient for Most Patients
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Melrose - GREAT idea! I know grapes freeze well, I bet the others freeze good enough for smoothies or just stirring into my oatmeal...YES! Thank you for that idea!!!
P.S. Although I'd rather have you over for the food fest!!!
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Frozen grapes are one of my favorite summer time treats!
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kjiberty, my sister did not ice and the only problem she had with her finger and toenails was some discoloration. I am not planning on icing; hoping I will take after my sissy.
sandik, I was at a wedding last night; at the Broadmoor, no less. The wedding was beautiful and then reception at the Broadmoor. Started on the patio with appetizers and an open bar, then moved to the ballroom. The food was, well, SPECTACULAR!!! Great music and dancing. I hadn't been there in over 30 years and it was so fun to be able to enjoy it and not have to pay anything. (I certainly cannot afford it)
Now just watching the fire; my state is on fire ladies! And this newest one is LITERALLY at my back door.
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Dance - As always thank you for the information
Vickilind - Glad you enjoyed the wedding and the fires are so frightening. We went through that here in Texas last September, many friends evacuated had a co-worker loose everything - I live on a hill and at one point there were so many different fires surrounding me within 20 miles I was like in a donut hole with smoke surrounding me on all sides of the horizon. Hope you and your family stay safe.
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jennyrjd - I will definitely check that book out. Anything to help laugh about chemo sounds good!
I have a question for those of you who are on steroids and Emend. I am positive that the MO said to take them the same days, beginning with day 1 of chemo. My husband insists that I'm supposed to take the steroid for 1 more day after the Emend. He called the doctor's service, but they haven't returned the call. What is your regimen with regards to Emend and a steroid?
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Thanks rgina. It is scary. DH estimates the fire is about 15 miles from our house. Manitou Springs (the entire city) has been evacuated! (granted, it's a small city, but still) Waldo is, I think, the 6th fire in the state. High Park is close to 50% contained and over 60k acres. Waldo started yesterday and is already over 2k acres. Just saw an update and the fire fighters are frustrated because this is a very volatile fire and it has been windy all weekend. Just ugly. I know the classification was moved up to a 1, which means it is the priority.
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Hate the fires!!!! I am watching the news right now and they are saying storms are on the way to the Springs so I am praying moisture is coming, and Vickilind, that you stay safe!
Welcome Graceful and so sorry about your fur buddy. Here's a hug from me and kisses from Kelly, our goofy mutt.
Nobody sick here, thank heaven, but between crashing today and our triple-digit heat (can you believe this, Vickilind?), I have been hanging out in the air conditiining this pm. Bought a new grill from Lowe's today (yay for free assembly) and will see if DS#2 is up to grilling dinner. Dunno what I feel like eating, nothing much sounds good to me, but I can supervise. -
RAELEN- I'm doing 6 doses TCH (c for carbo in my case) cuz I was told that even though my tumor was small (6mm) HER+ is so agressive , and esp so in pre-meno women (im 42h that it is being treated aggressively .... Not sure if this helps
TO ALL - thank you for reminding me I'm not a wimp .... I certainly feel like one at times and can't get over this ongoing feeling of sadness and anger
AND I can only take so much of the " but you'll see just how close your family and friends can be, your kids are learning valuable life lessons, you are being reminded of all life has to offer, etc" talk .... -
Dancetrancer- Hope you aren't on the Gulf coast since little ol' Hurricane Debby is stirring up the rain!!! We definitely would be having a food fest plus marathon movie watching if we lived closer to each other!!!
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Thanks Dancetrance, I will find the most recent report and get you the numbers. I too am wondering why 4 instead of 6 TX's (not that I want 6) My oncotype score was either 24 or 28 and really the MO said it was up to me if I even had chemo. Since I had that one positive node and that freaks me out I said yes lets do chemo! That is why I did the BMX, I want to give myself the best chance of full recovery.
Vickilind-that must be very frightening, I really can't imagine and I am so sorry that even has to happen.
Rgina- is where you live near Possum Kingdom? There were out of control deadly fires there last year. Very sad.
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Dancetrance- I don't know how to read to report....I see something that sayNeu#(ANC)(x10^3/ul and that number is 8.9? When I go for my treatment this Thursday I will ask the doctor to show me those numbers. Then we will figure it out. Thanks
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I love frozen grapes too. I read about them as a teen in a magazine article interviewing Farrah Fawcet. If Farrah did it, I did it. Laying down this afternoon...fatigue is cummulative.
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laprofessoressa - I am in the same boat as far as being too hard on myself. I get so upset if I feel like I fail (which can mean not making the full day at work, wearing out before the laundry is all done, or crying,) but NOBODY else sees it that way. I'm just never sick, and this blow was so huge. I never take so much as a Tylenol, and now my life is full of pills and poisons.
We're doing this. We just need to ease up on ourselves. We're putting our bodies through a lot, and we're doing it the best way we know how. That alone makes us strong.
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indigo, we don't have a/c and our swamp cooler is down.
We spent 2 hours at B&N in the a/c then hit Pinkberry for froyo. There are a lot of clouds but nothing seems to be brewing. There is ash on my car. Hoping they can get some control during the night. -
Jennyrid - I'm S. of Austin and west of Bastrop, Texas where the major fire was last year, almost 1700 homes were destroyed, but there were numerous fires all over the area at the same time.
Thinking about you Colorado folks - you for sure don't need to be worrying about this with everything else! Will pray for rain.
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