Chemo starting April 2018
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Falcon62, I'm so sorry you are in this distress, it's bad enough to be fighting cancer, taking chemo, but any kind of vaginal infection is miserable. I can tell you I have been fighting a mouth version of it, it's called thrush, and is caused by out of whack gut flora, changes of ph and yeast in the body by the effects of chemo. , its the oral version of a vaginal yeast infection. I have been given nystatin liquid and also a same type of lozenge, to kill the yeast infection. It's very stubborn, gives me a sore throat, and hideous taste in mouth, kills appitite and water even taste bad. im also associating stomach cramps and diahrrea with it. Speak up .loud and clear to your oncologist and tell him Your symptom,s, it may be a yeast infection for which you can be given a simple RX . I hope you can gain a measure of comfort soon. It does get better. It is rough, absolutely, but your team should be aiding you with your se.
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Gentle hugs to all the ailing doggies, and their moms.
For all of you suffering from horrible SE's, I heartily endorse all the recommendations to talk with your oncologists. I was ready to go to the ER after my first T/C, I felt so horrible. I just had my second T/C this past Thursday. They made a lot of tweaks with everything from the rate of infusion to changing the pre-meds, adding more IV fluids, etc. These past several days, I don't feel great, but the SE's are definitely tolerable. My MO even called me on Sunday afternoon to see how I was doing this time around!
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Dear Falcon (Karen),
I'm so sorry to hear about the side effects. Please do call your oncologist or nurse navigator. Like tomorrow. They should be able to help manage your symptoms. If they are not, ask to speak to the head attending oncologist and don't give up! I've learned to really advocate for myself, though I'm very lucky to have a great nurse navigator who manages everything. It is tiresome, though, to have to do this when sick.
I'm on a different regimen, but some things I'd want to know are: do you get a good pre-infusion to help nausea and side effects? Are you brushing with a baking soda toothpaste and rinsing regularly with something like Biotin? I do it 2-3 times a day, and I have xylocaine gel just in case. It was recommended before chemo, and it's really helping. Pre chemo, I get Zofran, Decadron, Pepcid, and Benadryl. I take Zofran for 2-3 days post infusion as well. It can cause headaches and constipation, so I don't take it any more than needed. Anyway, they’ve helped tremendously with nausea and some side effects
For bone pain, I take plain Claritin and I have Tramadol if needed along with Tylenol and ibuprofen—definitely ask doctor because my liver enzymes got weird and I had to stop Tylenol for a week, but all fine now. I have not had any white blood cell issues, so I've been able to avoid Neulasta. (I've got anemia, which is expected). It still hurts on day 3., especially lower legs.
As far as food—eat whatever you can. If there's a boost or ensure you can sip, that's fine. If not, try Gatorade—I got very sick with constipation on week 5, and that's what nurse said. She also has me drinking Smooth Move tea to help, a few times a week. Peanut butter, pudding, yogurt, rice, and noodles have been my mainstays. Nut and protein bars are okay. I finished 7 of 12 today. I'm much more tired, but the last Taxol is in sight.
Just always ask about medication or any products—better to be safe
Keep us posted!
Dee
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Congrats to weedie and Marie for finishing round 4! Did I get that right? Yay!
Duffyzmom, kiss that adorable dog for me. Such a cutie. My mutts are on my feet.
Hugs all,
Dee
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Hoping to bring my wife home (again) from the hospital tomorrow.
She developed a bad abscess on her mastectomy incision that required draining and a new surgical drain along with mega doses of antibiotics. This was on Monday. Today, she feels 100% better.
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engine104, sorry to hear that ur wife is having a difficult road. Glad the doctors caught the abcese..
astyanax66 , what is ur cycle for infusion? I start taxol the 31st..Thanks for posting what u are doing to manage side effects. Not too much different than what I had been doing for my AC se's. What's "Smooth Move tea"?
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Duffy is a cutie, so glad he is doing good.
Dee, congrats on number 7.
GA Warrior, how are you holding up? Your infusion was on Tuesday I believe.
Its got quite cold over here. Winter in NZ is wet andwindy. I am a bit wary of Taxol otherwise doing good.
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urdrago--I'll chime in for astyanax since I'm up early. ;-) She's likely on what a lot of us Stage 1, TP gals are on--weekly Taxol and Herceptin for twelve weeks, followed by Herceptin alone every three weeks for the balance of a year. Smooth Move tea is one of the Traditional Medicinals teas--available in many grocery stores. I used to drink their Throat Coat tea when I had a cold.
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Hello, ladies. I start my chemo regimen on the 31, and I just wanted to say that this thread was very helpful in terms of preparation for this ordeal. I’ll be getting 4 rounds of AC followed by 4 rounds of Taxol every 2 weeks. Glad to hear that most people are doing well on this regimen. I am really scared and your positive posts are very reassuring. God Bless and good luck to all of us
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Thanks all for the well wishes.
Also good advice on talking to MO about treatment. I'm on Day 9 post Round 2 and this time has definitely been a roller coaster. Gastric Issues seem to come up just as I thought things were getting better. I may need to add proactive Pepcid next round. I did the generic Omeprazole first round but after developing that awful diarrhea I tried to avoid it this time because I read a lot of stuff liking it to gut flora issues. Hopefully MO will have an opinion on that. I hate to be that patient but I have tickets to see Hamilton on Day 9 after next Round and I want to feel good for that.
Those of you using Smooth Move....how effective is it? Days 1-5 constipation was an issue but bearable due to the Senokot S.
Engine so sorry your wife is having such a rough time. Glad she has your support.
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InnaB2018. I agree 100%! This board is full of positive post that helps elevate the fears. You ladies are awesome and I am glad I joined your group.
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Ingerp, thank u I looked it up and used the detox a long time ago, but didn’t know lol the different verses they had. Very useful information..
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wife of Engine...so sorry. Thats is sxary. I have an appointment in the morning with my breast surgeon as follow up to having 2 aspirations on lumpectomy breast. I feel like something is goin on again, sore under arm, breast tender, when it wasn't . Will th is be needle drainage number 3? Will it ever all drain?
Having a sore throat again. Duffys mom, I hear you on the gut issues, Me too. Never know what the day will bring. Kind of glad I'm incognito mode in the wigs, as I never know where or when I may have a massive gas explosion, or worse. ( sorry if TMI) But I'm still kind of laughing, or maybe it's crying..not quite sure.
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Hi DJT,
My guess is your doctor will do a needle drainage if there is fluid there. The body can adsorb a small amount, so maybe he won't have to do anything.
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We are back home!
We have to do IV antibiotics every 8 hours for the next two weeks. I'll do two administrations and a nurse they are sending out will do the other one.
My wife is feeling a lot better, though her counts dropped off due to the infection. It was pretty scary. Sepsis is nothing to mess with. Fortunately, there was no organ involvement.
They won't be doing chemo for at least another two weeks. I don't know how we'll get through five or even four more infusions if it goes like the first one. They will give her Neupogen next time (about 48 hours after treatment). I hope that let's us avoid this again.
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Djt, did you start having troubles with your lumpectomy site after chemo started? Do you think it’s related in some way?
Engine, so sorry about your wife’s experiences, and yours as well. Sending positive thoughts and prayers your way.0 -
Djt, keep us posted on how it goes today. There are definitely days where the line is blurred between laughing and crying. Engine, wow. I am so so sorry about your wife's experience so far. I don't know much about the neupogen but don't they sometimes give several daily doses if needed? Again, not sure if claritin helps with neuopogen as it does with neulasta but I can't imagine it would hurt her to take it. The last thing she needs is bone pain after all she has been through. I am glad she is feeling better! PS..does she have a PICC or a port? Sorry if I missed that
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Engine, that's awful about the infection--hope it clears up soon.
I've been having to work a fair bit and also, ahem, "running" to the loo this week. Funny how the digestive area flips back and forth so much! Like DJT says, you never know what it's going to be like "down there."
Urdrago, I go every Tuesday for 12 weeks--start with bloodwork (about 20 minutes for results), then cleaning the port and preinfusion (about 20 minutes), then 30 minutes of Herceptin, cleaning (5 minutes), then 1 hour of Taxol (and final cleaning for about 5 minutes). With pharmacy deliveries, it's usually right at 3 hours from walking in to leaving. So, yep, Ingerp was right (and on the tea, too).
I don't know how many *total* infusions of Herceptin I'll have, but this is the initial 12, and I was told maybe 5-6 more? So, 17-18? After chemo is done, I just go in for Herceptin about once a month/every 3 weeks or so. I saw some research on the +++ board (sorry, I left, long story--I feel there is a lot more support here) that some evidence is out there for only 6 months of Herceptin, but I don't think that has yet become the standard of treatment. I'm sorry--I don't know the study or studies.
Duffyzmom, I really find the Pepcid helpful in preinfusion (and I've occasionally taken it at home), and as for this week, well, the Smooth Move was...quite effective! My nurse navigator said it was not as harsh as Miralax--she'd rather hold that for the very stubborn constipation. I've been drinking Smooth Move a couple times a week.
I hope everyone is having a positive day! Can't wait for a long weekend where I can recharge before next week's trip to Atlanta. (Hearing DH swear and screech and growl is kind of a pain--I know traffic stinks, but it is what it is, and we'll only be there 2 days).
Dee
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Frog, we are having the wackiest weather--hot, rain every day, and everyone and everything is soggy. Ticks are rampant. Gnats and mosquitoes will be here any minute. Georgia isn't bad in winter, but summer (May - October, really) is not much fun....
dee
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DJT- I hope you get some answers. Please keep us posted.
Dee - I had to chuckle at your Atlanta traffic comment. Feel the same way when we head into Toronto and it's no where as bad as ATL.
Whoever recommended baked potatoes! THANK YOU! I'm actually back to eating.
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Thanks everyone.
DebAl: They put in a line, I can't remember what it is called. It is like a PICC line, but only goes up inside her arm and not into the chest.
I'm not one to second guess our doctors, but I do question the wisdom of starting the first round of TC only about two weeks after surgery. The pathology said the tumor was invasive, but not aggressive. I think it would have been ok to wait maybe two weeks longer, but I am not a doctor. 20/20 hindsight, I guess.
I am concerned about some bleeding she is having when she urinates. We mentioned it to the doctors and they said we should check it with a GYN after this infection is resolved. It could be that her counts are still low due to the infection. That could be all it is.
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Engine- Did she have a catheter at all during her hospital stay? That could cause some residual bleeding. I'd be frustrated if they haven't at least done a urine screen to rule out UTI. Maybe they are assuming if it is just a UTI the meds she's on now for the infection will also clear that up.
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Hi Duffyzmom,
No catheter. They did test for UTI, as well as C-diff and MRSA. All negative. I think they want to see if it improves or goes away as her counts improve and the sepsis goes away. She is on heavy duty IV antibiotics for the next two weeks here at home. Fingers crossed.
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Engine - Sending you two light and love.
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We left a message for the onco today. We haven't heard back yet.
I did find some posts on here and elsewhere where Taxotare can cause UT bleeding. Fortunately, it isn't a large amount. My wife says it is like a period, which she stopped having 16 years ago. There was no bleeding before the chemo and the counts dropped.
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Hi InnaB,
I think a lot about what to say about chemo to others. The part I find most stressful is how there is zero privacy at my facility; it's a wide open space. I know that doesn't bother everyone, but it was gut wrenching for me. I’m such an introvert! But my regimen is not painful. The nurses are all very nice and professional. Everyone has been kind. What was hard to know was what side effects to expect, so we prepared for every contingency. I look at side effects as “management.” They change sometimes from week to week. I adjust to what my body needs, and that sort of means writing down and knowing what works and what doesn't. That approach has helped. I admit that the bad constipation in week 5 was a shock, but i learned from it. It has helped to recognize that Thursday and Friday are my low points of the week. You will find your balance and routine. Just remember to be patient and not hard on yourself . It’s a lot to handle!
A nurse told me about baked potatoes, for potassium, so she gets the credit.
Dee
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Hi, Dee! Thanks for the words of encouragement. I'll remember the baked potatoes
. Regarding privacy, it seems to me that this ordeal is destroying privacy at its core. I have five friends who have had mastectomies. All of them were eager to show me their new boobs and told me to touch them, if I wanted. I was shocked at first. I don't think I've ever seen another woman's breasts aside from inthe movies, of course, let alone touched one. Four weeks after the surgery I finally get it. I just don't think they are a part of me anymore. And the amount of people who looks at them and handles them is staggering. Chemo will just add to the indignity of this nightmare. A funny story: day 2 after the surgery I wasn't feeling well at all. My cousin Was staying with us for a few days to make it easier on my husband and to keep my mind off the impeding pathology report. It was about 9 pm and the two of them just tucked me into my recliner for the night. Suddenly my cousin was like: hey, did you poop today at all? And my husband said: remember the issues you've had with it after your back surgery? You took the stool softeners, right? I was speechless. To hear two of my family members question me about my bowel movements seemed too unreal for a moment. I almost cried, but then decided to laugh instead.
Privacy is so overrated 😜
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Question, a friend will be getting A.C. x 4 then taxol weekly x 12 weeks. She's concerned about working. Will she be ok to work during the time she is getting taxol? Just wondering in general how you all did with side effects. Thank you
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Deb I am no expert (sitting in #2 as we speak!) but I’ve been feeling pretty good for the last week. I haven’t missed any work other than the infusion, although I work from home. I feel like if she’s trying to protect work days, she might schedule her infusions early in the week. I was more focused on the weekends and so far getting tx on Fridays is working. I hardly noticed anything except a little fogginess on Sunday, my Day 3
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Thank you ingerp, I can see her possibly wanting to return to work for a sense of normalcy. I'm glad to hear you are up to working. I hope the rest of your treatments go smoothly. Enjoy your weekend!
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