Cytoxan Taxotere Chemo Ladies- February/March 2013
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regbeach- you may want to have a squirt bottle handy to rinse off your mom's bum after urination and also may want to have some Destin ointment on hand. There are two other sites that I would go to when I was on chemo. Here are their links: http://oncolink.org/index.cfm which is the Abramson Cancer Center at U. of Penn and http://chemocare.com/ which is the website founded by Scott Hamilton, former Olympic ice skater and cancer survivor. The intake of fluids is very important after the chemo. You may want to talk to the doctor about automatically having your mom come in for IV fluids after the round of chemo. Many gals I know have said it helped them.
You may just want to have a box of disposable gloves available when taking care of your mom. It's just something you and any nurse/care giver would do. You may want to arrange to have a home health care person come in to help you. Don't be afraid to tell the doctor that this is what you need. If you need help or think you will, get it.
I know you will get through this. Just sorry we don't live closer to each other so I could actually help you. Hang in there!!!! Sending you positive calming and healing prayers, thoughts and energy.
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Thanks TM60 and melrose for your comments, good info about hair. And I do need to remember to take it easy and not expect immediate energy... one step at a time.
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btdemo- You got it!!!! You just keep eating healthy and resting and your body will recover. You may feel muscle and joint pain for a while but it will get better. I can't give you a timeline of when your body will feel better but slowly but surely, you will start to feel good. One day, you will realize that the achiness is gone and you are moving around better. For now, just take it easy and you will be ready for your next phase of treatment. HUGS!!!!
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I have been wondering why I still feel so achy it seems everyone does for a while after completion. My legs hurt alot still and I was beginning to worry about it. Thanks for the info
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Melody- My leg, hip and foot joints all used to hurt. I used to shuffle around and took little steps when I first got up from sitting or laying down. I would always take my time when I first would stand up because I never felt sure that my legs and feet were going to hold me. Now that I look back, I guess that my foot pain was perhaps neuropathy and not a flare up of plantar fasciitis. I just keep moving and walking which seemed to help. At your next onco appointment, you can talk to your onco about how you feel post chemo. If the pain is intense, you can always call your onco to see what he/she recommends.
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Hi Ladies,
I hope you are all feeling OK today. Thanks for the comments about my mom (the one who had the stroke last year and the decision to proceed with chemo). It was postponed from last week to this week (mostly, because I thought she was getting a cold which she wasn't). Just like last week, I am having second thoughts about the decision to proceed with chemo. One minute I feel confident and hopeful that the side effects will be managable. The next I think about how tired she is right after her hour long physical therapy...until she gets a root beer and a doughnut. (yes, I know not healthy). Or how she is tight after sitting on the couch for a few hours. And try to imagine if she will even be able to stand up on the "tired" days of chemo.
Plus, I mention chemo and that she will feel bad for a few days, but that it will go away, etc. I explain that it is best to kill any cancer cells now, because she might get cancer in a place they can't treat it. Remember she can't really speak, but has been able to understand more and more. Her phrase is "I don't know" which sometimes comes out when she can't find the "right words" she wants to say. Of course, sometimes it is an appropriate "I don't know", too.
When I talk about going for chemo, she says I don't know, then eventually makes a face and says no. I don't know if she can make rational decisions. Like, she decides if she wants to go the store or stay in the car, or if her clothes are dirty. But, somedays she would skip therapy if I didn't convince her to go, and sometimes she is impulsive and touches her toothbrush to the bottom of the sink (yuck!). My brother talks to mom and gets her to agree to trying at least one treatment to see how it goes. Then, I ask to confirm and she is back to "I don't know."
I can't imagine her anxiety about the whole thing (though with how much I've cried today, maybe I can). I think of how I procrastinate and postpone and would do anything to get out of a colonoscopy...this is way more than that. She went through fatigue issues when getting adjusted to anti-seizure meds. She missed alot of therapy and her walking and strength suffered.
It is so hard to know what is right. The doctor says because she is improving we should do it. I know it is her best defense. Sometimes my brother says- maybe, we should cancel it, if mom doesn't want it, she has been through so much in the last year, maybe we should let her enjoy the progress she has made, and just see what happens.
Back and forth we go. And I still haven't told her sister.
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regbeach - sorry for all that U R going thru with Mom. You R right, It is hard to know what is best to do next. Would she consider a family counseling session with a professional? Just a thought.
All the Best to you and Happy Memorial Day to all our veterans far and wide. Peace y'all!
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Regbeach, two things to keep in mind:
That if you go ahead and start your mom's chemo, you can stop after the first (or second or third treatment) if it turns out to be too much.
Mention every troublesome side effect and symptom to the oncologist and don't assume it's just something that comes with the territory. Make sure you know how to get ahold of someone after hours, too. I had terrible sharp, stabbing nerve pain from my first treatment, but didn't mention it until I went in for my second. My oncologist knew exactly what to prescribe to help me, and I never experinced it to that degree again.
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For those following the story about the cheme decision for my mom. First, thanks for reading and commenting.
This AM (Monday) I talked about chemo again with mom. She was adamant with no. Then, I said she would still have to do radiation and she said no- which made me question her ability to decide all over again. Most of the day I was thinking we would cancel it. Then, I talked to an old friend who basically thought the original plan of trying at least one treatment seemed like something everyone had agreed to and why not do that. My brother and I talked to mom again. She tends to listen to him- like, she won't do extra exercises at home for me most of the time but will always do it for him. It's either his deep voice, or she's just tired of me telling her to do things all the time (take your medicine, move your foot, etc).
Anyway, with both of us there, she agreed to do it. Oddly, this time, she cried, which of course made me question all over again. It seems no matter the decision the opposite one always seems better! I say oddly- because the neurologists told us her personality and emotions would be affected by the stroke. One specifically said she would never cry again. She has laughed, she has been annoyed but through all of rehab and breast cancer news never one tear until today. Maybe the situation finally sunk in, maybe her decision this time even with tears was made with a different clarity, a realization that chemo as bad as it might be, might be a good choice. Or maybe she just couldn't take us bringing it up again and is doing it because my brother said the drs. and us think it is a good idea to try.
Either way, it doesn't feel "better", it just feels surreal. Of course, I googled one more thing and read horrible stories of side effects- numbness in feet, blah, blah. And read that the steriod has a moderate interaction with her anti-coagulant- trying to tell myself that it is just for 3 days.
She is always tired when she goes to bed (silly, aren't we all), plus she takes her more of her anti-seizure med at night which might add to it. Those are the moments when I think- My God, I hope she can still walk on the "fatigue days" and that there aren't more than a few in a row. I thought her agreeing would feel better. In the AM, I first felt bad (like wrong decision) when she was saying no, then I felt sort of relief that we wouldn't be dealing with chemo. Then after talking to my friend, I felt like chemo was right again, then mom's tears...
Steroid in the AM and IV line in the afternoon.
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regbeach
Best to you, Mom and ALL. In your pockets with healthy dark chocolate and big HUGS. And a good short work week to those of you lucky enough to have a job right now (obviously I do not and boy do I miss some of it). Peace!
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Nothing like a last minute new decision....
First, thanks for your support in my decision-making regarding Mom and her chemo. I was mentally ready to start it, felt I could (as her caregiver) deal with the side effects, picked up the prescriptions and Claritin, left a message for the doctor with a dozen final questions (making sure he knew she couldn't feel cold on her leg -in case of neuropathy, asking about B vitamins for it, asking if she should sleep in recliner in case she throws up at night because she can't sit up herself, etc.) When I woke up at 5:30 am, it felt unsure, but then it felt good to be proceeding.
Half an hour later, mom woke up. She looked really tired. I reminded her we were going to hospital in a few hrs, re-explained the whole situation, she said no, was visibly irritated. I talked to my brother. We cancelled it. Talked to the doctor. He said either choice would have been a good one. So, we are hoping for the best.
And, yes, I am still thinking about those rampant cancer cells, wondering if they will multiply "too fast", and sort of wishing poison was attacking them. Hopefully, those thoughts will pass. Off to schedule radiation.
Good luck to everyone on this forum. Your ability to manage counteracted my worry each time I found some horror story elsewhere. Thanks again!
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Regbeach, you know we will all support your decision. It was going to be a tough call either way. May I suggest doing a little more research on low dose aspirin therapy (3-5 days a week) and Vitamin D3 supplements as lower stress things your mom can do that might reduce her risk of recurrence? There's good evidence for both even if it's not dramatic. Of course you would check these out with her MO and other doctors.
And be sure to avail yourself of all the good info about radiation treatments on this website.
Blessings to and your mom!
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regbeach- No matter what, it is all good. Since she has let you know that chemo is not what she wants, just have to respect her wishes. As for the radiation, check out the Miaderm radiation cream that I've been told by my gal pals works very well. Here is the link for the website: http://miaderm.com/ . Here is the link to Amazon which is where most purchase this cream: http://www.amazon.com/Miaderm-Cancer-Radiation-Treatment-Protects/dp/B004TB9SFE. Most of the gals have used at least 2-3 tubes. The radiation facility may give this cream to patients. Just make sure you ask the radiologist what he/she recommends. Aquafor which can be purchased at the drug store, Target, HEB is also sometimes recommended. Wishing your Mom and you and your family the best. You are always welcomed here and always welcomed to private message any time if you need someone to vent to.
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Regbeach, I am glad you have come to a decision you can feel some peace with. I can only imagine how agonizing it has been to have to make these choices on her behalf while still trying to respect her wishes. There are also a lot of alternative things you can try that would have minimal side effects & may reduce recurrence. Maybe that's a path you might want to explore down the line... or not, and just know that you've made the best decision you could make NOW with the information you have NOW, and try not to second-guess it further. Lots of love and hope and strength to you and your mom & your family.
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Regbeach, your Mom is so lucky to have you as her advocate. You are doing all the right things by getting the information you need to help your Mom and family make some important decisions but in also respecting her right to choose. I was in a similar situation years ago with my Mom who had Alzheimer's but was still aware. Her decision-making ability was hard to assess at times as sometimes she was more clear than others. It's a heavy burden, but an awesome expression of love. Strength to you, Sister warrior!
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Day 5 PFC. Difficult to determine what is a SE and what is just nature...allergies/sinus was the headache culprit I determined after a day of it. Took half a Claratin, seems to be doing the job. Still have some muscle aches and general weakness, but each day is better than the last. Thank you all for your support.
Annielane: I woke up thinking of your quote: "even so, it is well with my soul". Calms me each time I read it, thank you.
Regbeach, I cannot imagine your situation, but you have total support here. Also, my aunt (aged 96) and my friend's aunt (aged 83) resond better to men. We think its a generational thing but it has been noticiable, actually strikingly so. And by comparison, they have been "frustrated" with us women family members. You are making the best, caring decisions and allow her to be involved in those decisions. Your journey is not an easy one, but good vibrations, prayers and thoughts are being sent your way.
melrose: thank you for your wise cousel. I know i have asked questions that have likely already been answered on previous threads (maybe more than once, darn chemo brain!! ), but you continue to respond kindly with great info. Thanks. (and thanks for reminding me to take care of me, easy to forget that one)
a peaceful week for all is my wish.
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Has anyone gotten numbness in their face? My cheek keeps getting a bit tingly and numb and the skin on my neck feels kind of... tight? Seems to be mostly on the left side & comes and goes... It's just annoying (and anxiety-inducing) more than uncomfortable or painful... hoping someone can tell me it's a normal SE...
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Hello ALL,
Thank you so much for the words of wisdom, the prayers, the reminder that Jesus our Lord is in charge and for just being here for me and everyone. Love U guys!
Went for my second round of mapping today for RADS and found out I was accepted for the 3 week Canadian version (I am participating in a research study) and will get to start on June 5, 2013 - just 1 week from now. I am so happy. It is like they have given me the ultimate birhday gift! Yep, I'll be 52 years old on Friday (May 31st) but I actually think I only look like 42 years old and intend to lie about it as long as I can! Ok, now I will go back to some mindless cleaning and filing of papers. Peace y'all!
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I'm starting cytoxan/taxotere next week. I have chosen to do chemotherapy prior to surgery. Is there anyone else that has chosen this path? I felt really good about my decision, but now starting to have some doubts. Any help would be appreciated.
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cmbernardi-I start a 3 week programs with rads tomorrow. Let's stay in touch with each other! I bought miaderm for skin issues. My NP recommended that i take a tepid shower when i get home,and put emu oil or castor oil on the breast. Any tips you can offer me? Hydration,hydration! and protein consumption too.Wishing ALL of you the best today!
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Cmbernardi and Pattithenurse - I am hoping to get into a 3 week clinical trial (boosts included) but won't know until June 14 and woudln't start until June 24. Taking annual trip to the beach which RO said was ok. I would appreciate hearing about your experience either here or on summet rads forum.
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indenial, I would touch base with your MO about the numbness and tingling in the face. Of course Taxotere can impact nerves anywhere in your body. Are you taking B12 and or B6? I have since my second infusion and think it's made a big difference in the impact on my nerves.
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Oh, hey, Everyone! Today, finally, we got the word that my sweet 16 year old granddaughter finally has clear margins after her third surgery for her phyllodes breast tumor!!! Praising God for answered prayer and doing the happy dance here in San Antonio and up in Dallas!!! She will need to be followed up closely for the next few years and probably for life, but no further treatment is needed now. Yay!!!
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Good news Annie
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So happy to hear the good news about your granddaughter, AnnieLane!!!
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Great news Annie!!
I will mention the numbness at my next appointment... I went to give myself a B-complex injection today to see if that would help, but I managed to break the needle & then stab myself throwing it out so I took that as a sign NOT to get a new needle & try again! I keep messing up injections and don't want to screw up now with low WBC and increased bleeding risk LOL. I will have to get some pills instead. It might be slight neuropathy because I occasionally have a similar tingly feeling in my feet and the very tips of my fingers are a bit numb too. Who knows. Hopefully since it's mild it will reverse itself?!
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Hey gals.... you can certainly keep this thread going no matter if you are heading to rads. I know that each of you feels comfortable with each other.... so please stay here if you like!!!!!
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Regbeach, such a tough spot you've been in. It sounds like there really are no wrong answers. I commend you for being so thoughtful and considerate to your mom being her advocate.
Annie, such great news about your granddaughter!
I had infusion #3 today. First time I went alone and it was o big deal. Now I think, why do I need to take anyone along? It's not like I want much company. I hate to have people see me in that chair. My daughters are with my parents; that's the best way for them to support me at these times.
I was at MDA Houston last week, to the IBC Clinic. I had a hard time getting an appointment, so when I got 2 days notice for a Second Opinion, I went. My doc told me my case was too complex for second opinion, turned my MDA case into a Consultation. I had a number of other tests done before I went home. My case will be presented to the whole team: my doc is the MO, then RO, BS, radiologist, pathologist, researchers, who knows else. I meet with my doc June 7 to hear the recommendations. I feel very confident I will get top, experienced care there. My doctors here have barely treated IBC.0 -
Pattithenurse - 4 sure we will stay in touch & keep each other informed.
AnnieLane - terrific news! Congrats!
ALL - thanks 4 always being here. Peace, love, ptayers & blessings & Happy Birthday 2 ME!
CB
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cider8- Glad you were able to come to Houston to your case looked at. Please keep us posted. If you end up being treated down here, please feel free to private message me about the Houston Medical Center/MDA area. I was treated at another hospital not far from MDA Houston.
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