Chemo starting April 2018
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Lol about the poop, InnaB. But yeah, the “handling” does get old. I’ve taken a good look and let a friend who is an RN see the healing (my surgeon did good work), but I admit to being relieved that the medical folks are no longer that interested. I’m guessing that will come at 6 month check up.
I’m working (on paper) 25 hours a week from home..,it’s more like 30. I teach online, hold meetings, attend webinars, and call in. Plus I do written work and grading. I try to make sure I get hours in on my good days and work less on the down days. I take breaks and have really focused on drinking water and getting in that darned iron. If I had to commute as normal, an hour each way, that would be much harder. But I’m glad I’m still able to work. My nurse navigator set up everything for me.
Boy, have I got a weird SE this week... folliculitis on the scalp. It’s more annoying than painful, but it is itchy. I really couldn’t see anyone for it today, but I’ll treat at home with tips from Mayo and get it checked on Tuesday. Just...bizarre. Hope y’all have a positive weekend. We’re into our second full week of nonstop rain.
Dee
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My wife is doing better. Thank you all for your thoughts and prayers. Her energy is coming back. The urinary bleeding seems to be slowing down too, as is the drainage. Hope this continues.
We'll see the surgeon again on Tuesday and the oncologist on Wednesday. I don't think they'll do the second round of chemo for a little while, at least until they are sure the infection is gone.
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Great news about your wife Engine104! Prayers things continue to improve!
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Day #3 post 4th (last) taxotere/cytoxan. Posting to say today was much harder than previous Fridays after infusion day (Tuesday). Super tired and out of it and my legs feel like lead. BUT I forced myself to go on a walk in the woods and although much slower than usual and at times I wondered if it was a bad idea to be on the trail, about 2/3 of the way through I started to feel much better. So, I'm becoming even more of a believer in the "get the blood moving" Rx even when I really want to stay on the couch... I know it's not always the right thing to do and it can be annoying to have people tell you to Exercise! when you feel so crummy but sometimes it just may be the ticket (crosses fingers)...
Here's hoping for a good weekend for everyone!
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Debal,
I have just finished #8 of my taxol. I receive my infusion on Wednesday and have not missed any work except for Wednesdays. With this schedule I feel the worst days are on Saturdays and Sundays. So far the side effects have been very manageable. This board has provided some wonderful suggestions on managing the side effects.
Duffy you dog is just adorable!!!
Happy Memorial Weekend to everyone!
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Hi All,
I'm back - I had round #3 of AC on Tues and it sorta kicked me in the behind. Man, it hit me hard on Thursday afternoon and I was on the couch all day yesterday. I'm much better today, though. Thankfully, just one left of AC, on 6/5/18, but holy cow, I'm dreading 12 weeks of T after reading all your posts.
Welcome InnaB and LIFE, I'm so sorry you have to join us, but this group is wonderfully supportive so you've found the right place.
I am SO sorry Engine - you must be worried sick over your wife and she's a trooper for all that she's gone through. Sending prayers and good thoughts your way!
Dee (astayanax) - lol, I drive in ATL traffic every day. You certainly have to pack your patience. I hope you enjoy yourself while you're here!
DebAL, I haven't missed any work due to my AC treatments, except for the afternoon of the infusion (I work in the morning that day). It lays me out on the couch (like the flu) from late on Thursday, through most of Friday. Your friend may not have the same experience, but her MO should be able to help her figure out the best treatment day so she is off of work around the bad days (they seem to be somewhere between day 3 and 5 after treatment).
Congrats, marie, weeedie, udrago, and Frog for getting through your ACs. I'm jealous, but I'm right behind you.
Hoping everyone has a good long, restful holiday weekend. Hugs!
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positiveinohio, I'm positive in Ohio too! ..Columbus area. I'm so glad you are doing well. I had kind of assumed working through A.C. would be out, then I saw GA warriors post which was also encouraging. I'm sure my friend will talk to her MO. Not only is she my friend but coworker but I manage her schedule. Reassuring her to take the time she needs and not to put an ounce of worry into coming back and to leave that to me. I want her to take care of herself. It breaks my heart that 2 weeks after my last treatment she will be in my chair for her first treatment. I'm sure in the near future she will find herself supported greatly through this forum. Thank you all so much.
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Happy Weekend All! - Sounds like most of us are on the upswing. Always good to hear.
I have decided I will discuss dosage with my MO when I see him this week. I no longer work but if I did there is no way I'd be working and enduring TCH. I've been bad for about Days 4-8 and other than dog walks barely functioning. I never take my shoes off when nurse weighs me plus I had about 7 lbs of cruise fun weight on me when I started treatment. Which we all know isn't real weight and its gone now. I've been reading quite of few posts about dosage and so I'm thinking maybe reducing dose or dosing based on my "real" weight may make a difference with SE.
Speaking of SE anyone develop chemo rash? This week I had a pustule develop on my upper lip. The only thing I can come up with is chemo rash which I guess can happen with the Taxotere. I have to be very careful with it or it just starts bleeding and is difficult to stop.
Americans enjoy your long weekend.
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Thanks, GAWarrior.
Well, I remember that when we were battling AML 16 years ago, one of the nurses said that cancer is a roller coaster. It certainly is....
Things are going fine, but we ended back up at the ER (Urgent care part of the ER) again this morning. My wife's drainage tube clogged overnight and it was leaking around it. Fortunately, the on-call surgeon re-positioned it and changed the dressing and it is working like a charm, if a surgical drain can be described as working like a charm
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Oh, Engine! So sorry to hear about your wife’s problems. Good luck to her and hope she recovers soo
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wow, everyone, i had to read a lot to catch up..... so much going on with everyone. Thanks to all for your concern, I don't have anything to complain about, especially in comparison to many of you. My Dr. Appointment revealed a lot of scar tissue growing in breast, toward the lymph nodes, and dr. said no nothing to worry about. There is still some fluid build up in breast, but she wants to wait to see if it reabsorbs into the body by the time I do radiation.
All in all not a bad few days, I even cut the lawn, and did other housework. Engine, I hope you guys have seen the last of the ER for a long while. Best to your wife for some long awaited smooth sailing.
I really wish a lovely weekend for all here.
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Dee and Inna, I find it very interesting about your comments on privacy, and 'handling. "
I also, am very private, introverted and unable to say much to others re my medical stuff. I lost my tolerance to be a "good patient" at a young age after years and years of heart issues, surgeries, and related hospital stays.from childhood on it became a big issue for me to even go to the Dr. For anything. I remember being in cardiac ICU one time, and with no warning, the entire group of approx 22 interns and a couple Dr.s come strolling to my bed discussing my STATS like I was a non existing piece of warped furniture. Never addressed me as a human being. That twisted me up. I could related 10 more stories, but suffice it to say, I hate Dr, visits, exams and anyone even touching me. I got to the point that one time in ICU, I removed my own IV, and called a cab and left, as I could get no one to get me a (allowed ) drink of water. Wow, that got big attention.
At a stress test on the treadmill, I told them when I had to stop, (I was told to let them know!) And they kept go in and sped the thing up. I pushed the Dr. Out of the way to jump off. I was told I had a panic attack. Uh, no. I'm the patient here, and you did not listen to me, THE PATIENT!
So the cancer thing, well, I'm older and wiser, and I have a good team, but damn. I want to be left alone. No, thanks I don't want the shadowing new face of each intern to grop my mutilated tit every time im in for a visit. I have told no one but my sisters, and 2 children of my dx, I just don't want the fallout, because I won't be nice.
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Engine. Sorry to hear that u ended back to the Er but hopeful ur home again. Prayers
Hope everyone has a good as possible Memorial Day/ weekend..
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Hi everyone,
Thanks so much for the good wishes.
All is well here. We came back home after they changed the dressing and re-positioned the drain. My wife took our beagle for a short walk. She seems to have good energy back. The wife, that is. The beagle is sleeping
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Has anyone developed a horrible rash after chemo. I had my first treatment 9 days ago and 2/3 days after I had a painful itchy rash on my face, chest and all over my scalp. ONC put me on antibiotic and said it was folliculitis. It’s a bit better now and not painful. But still very red. Has anyone else experienced this and how was it treated. Special soaps or creams.
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Hi Brennalynn,
Which chemo were you on? My wife got a rash from her Cytoxan and Taxotere after her first infusion last month. They gave her some cortazone cream that helped a lot.
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Hello everyone,
Trust you guys are having a good weekend. Its been nice and sunny in Auckland but temp will drop to single digits Monday onwards and it is going to be wet. Dee, you scared me with mosquitoes and gnats. I will take wet and windy and stay indoors.
Good to see you back GA Warrior, one more to go.
Marie68, you said last of your 4 treatments, are you done with chemo???? Yayyyy for you.
Engine, so good to know your wife is feeling better and I hope you guys have the most uneventful treatments ahead.
I start Taxol tomorrow. Do not know what to expect. I am a bit wary of the infusion frankly. Last week was good. Feel almost normal. Can taste food. Big yay in my book. Sore nails though. Also, my palms have darkened couple of shades and I see lots of brown spots on them, anyone else?
Happy Sunday everyone
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Dee and Onna, I find it very interesting about your comments on privacy, and 'handling. "
I also, am very private, introverted and unable to say much to others re my medical stuff. I lost my tolerance to be a "good patient" at a young age after years and years of heart issues, surgeries, and related hospital stays.from childhood on it became a big issue for me to even go to the Dr. For anything. I remember being in cardiac ICU one time, and with no warning, the entire group of approx 22 interns and a couple Dr.s come strolling to my bed discussing my STATS like I was a non existing piece of warped furniture. Never addressed me as a human being. That twisted me up. I could related 10 more stories, but suffice it to say, I hate Dr, visits, exams and anyone even touching me. I got to the point that one time in ICU, I removed my own IV, and called a cab and left, as I could get no one to get me a (allowed ) drink of water. Wow, that got big attention.
At a stress test on the treadmill, I told them when I had to stop, (I was told to let them know!) And they kept go in and sped the thing up. I pushed the Dr. Out of the way to jump off. I was told I had a panic attack. Uh, no. I'm the patient here, and you did not listen to me, THE PATIENT!
So the cancer thing, well, I'm older and wiser, and I have a good team, but damn. I want to be left alone. No, thanks I don't want the shadowing new face of each intern to grop my mutilated tit every time im in for a visit. I have told no one but my sisters, and 2 children of my dx, I just don't want the fallout, because I won't be nice.
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Djt, you are so right! Sometimes I do feel like a piece of research statistics. Where are you being treated? I am going to MSK offices in NJ and so far was pleasantly surprised by the level of compassion and empathy from everyone I had to deal with, starting with the appointment schedulers and ending with the surgeons and my oncologist. I feel like a person, not a pawn when I am talking to them. And trusting your doctors makes a huge difference to someone in a fragile state of mind. I sometimes get so weepy, I feel like a teenager again, what with the mood swings and fear of the future. I sometimes invent a reason to call my doctor’sOffice to get a call back from my favorite nurse, because talking to her works better for me than Lorazepam. How weird is that?
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Wow DJT - you've had more than your fair share of medical crap. I'm lucky usually it's just me and my MO at visits now. Maybe just a benefit of the time of year.
I'm a big talker so everyone knows about my DX. I blogged extensively when I had lymphoma mainly because we live far away from most of my family so it was a great way to keep everyone involved and I didn't have to deal with lots of annoying phone calls.
Frog - I've had fingertip/nail issues but it's more on and off than constant. I do notice if my hands get warm it is worse. My tips almost look red/black then and feel like they're on fire. I've been using lots of vitamin E oil on my cuticles and trying to keep nails short and smooth but lots of splitting and cracking.
Inna- I was the same way although more like a angry alternating with weepy teenager. Poor hubby has dealt with multiple outbursts. Usually over nothing at all. I did recently increase my beta blocker and that seems to be helping with some of the emotional mood swings (and I'm also helps protect my heart from the perception).
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I am receiving Taxotere and Cytoxan as well.
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Hi Brennalyn: Unfortunately, the rash seems to be a SE from the TC protocol. My wife also had it on her scalp.
Dear InnaB2018 and DJT: When my wife was in treatment for her acute leukemia 16 years ago at City of Hope, she was part of a study researching a link between radiation for breast cancer and leukemia. I'd like to think that part of that study was incorporated in changes between when she received radiation and how they do it now (Her previous BC was 22 years ago. They used to routinely do 8-10 weeks of high dose radiation ). Anyway, not once did she feel like a guinea pig or just a test subject. They always treated her with the upmost respect and kindness. That's the way it should be and it is how City of Hope has always done things.
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Hi, Engine. Hope your wife feels better now.
Re: privacy and decency. I just feel like there is nothing private in my life or body anymore. Too many people are poking around. I imagine it will be much worse when chemo starts.
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Brennalynn, I've developed folliculitis in the past few days on my scalp. Since The oncology center is closed, I've had to self treat (I go in tomorrow). I'm using chlorhexadine wash, like some use before surgery, and it really helped. I'm taking Benadryl at night for itching. Because it can spread, an antibiotic is the best treatment. It's a known side effect of taxanes in particular, but it can hit anyone with a compromised immune system. Hope that may help.
Dee
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Hi, DJT,
Wow, you sure have had more than your share of poking and prodding! Yikes. I think i was pretty good until chemo. I know many kind people who bond with others in their infusion setting. I can’t. Obviously, if someone says hello, I do, too. But I loathe the setting. I want privacy at this vulnerable time. I’ve seen places where each patient has a frosted glass separator from others, a comfortable chair for their visitor, and a semblance of privacy, but still in clear view of the nursing center. If it wasn't for the really sweet nurses, i would complain. The chair for your loved one is quite hard and small. You can see and hear everthing, though the nurses use soft voices. They do pull a curtain when accessing my port. I pretty much put on headphones and a movie right away to tune out. Well, just 5 sessions left now with Taxol, so I’ll grit my teeth and get it done.
Hope yall have a good week!
Dee
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Frog, thinking of you - how did your first Taxol infusion go? Did you ice your hands/feet to help with neuropathy? You mentioned darkened palms after AC - I don't have that, but I swear my skin tone is darker in general (I'm usually lily white) and that I have more (age?) spots all over. Hoping you're staying warm and eating okay!
Djt, did you start probiotics? Did they help?
Thinking of you, urdrago, as you start your TC this week. Are they still going to give you Carboplatin? My MO had said he would if my tumor didn't respond to the AC, but he seems to have changed his mind now that it has shrunk and is only talking about T now because C isn't yet "standard" for treatment. He also knows I'm terrified of neuropathy because of my profession, so maybe he's being cautious?
InnaB, you'll do fine when you start AC this week. This board probably has you well-prepared and we'll all be here to cheer you on! For me, the best thing I did was to keep a comprehensive diary every day during Round #1 and 2. What symptoms, my energy level, what I took for meds (Claritin, Pepcid, etc). Symptoms don't vary too much from round to round, so it really helped to be able to refer back to the diary so I knew what worked and what didn't when I went for subsequent rounds. Ask about possible constipation - a couple of us have had it from the chemo/nausea meds combo and it is not fun, so you might want to be proactive. DRINK a tone of water. I hope you're getting Neualsta (bone marrow stimulator) - if not, ask why not! Good luck!
Duffy, how is your sweet doggie?
astyanax, good luck in ATL traffic this week! At least, school is out, so it "should" be better than usual.
I walked on the treadmill today (2.10 miles) and walked to a nearby lake and back with hubby yesterday (about 2 miles). I can't believe what a struggle it was. I know it's because my blood counts are low again, but geez. Feeling all right, other than that. Bring on AC #4 on 6/5!
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Hello ladies, I had my last AC on 23rd May, was doing well until Saturday evening when I noticed a swelling in my groin, went to ED yesterday with temp of 100 and had to get Abscess drained, definitely not the nicest of things. Temp went up to 102 but came back to 97.6 but is after going up again to 101, I'm on antibiotics, hopefully temperature will behave and I'll get home. I never expected to get this, what a bummer
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Weeeddie, I hopefully the antibiotics kick in soon for u.. I have to say in 24 hours I felt better but it took 48 hours to improve the overall fever. I still have cough and sinus pain/headache but mild to what I awoke to on friday am.
GAWARRIOR, not sure why she reduce it to just Taxol but I'm happy that it's not 2 drugs. I wanna. Just like every one else here get on with my life. I will as at my next appt. Why she elimated the carboplatin...
Has anyone else noticed that sores dont heal as fast as before cheno? I still have the scab from my Neulasta..
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Hello all,
Taxol 1 of 12. Day 2. There are no anti nausea meds and well there is no nausea, yet. I like that. I have some pain in my back, the nurses did mention that might happen and to just take some over the counter painkillers. GA Warrior, no I did not ice my hands or feet. My clinic did not offer it and I do not know if I could have taken it. MO said the numbing and the tingling is more cumulative so we will see it as we progress. She mentioned its at its worse around 2 or 3 weeks after treatment stops. I do have sore nailbeds one thumb and one index finger. Apparently soaking them in epsom salt water helps. I read it somewhere in this lovely board. Going to try it tonight. The nurses mentioned to soak in water with tea tree oil or white vinegar to deter any infection and make sure that your nails and underneath the nails are really dry, no moisture.
Lot of Dex still in the system. My sparking bedroom is proof to that. Nurse said I will crash sometime tomorrow as the steroids leave the system. Its sunny outside and I plan to walk to pick my kid from school. It feels good to be outside though the temp has fallen to 4 degrees C.
I figured that I found the smell of the saline or whatever they use to flush the port really offensive. Chewed some soft ginger candies through it and was fine.
It seems next infusion there will be no steroids, only ranitidine and loratidine. If body tolerates it well then nothing at all from the third infusion.
Lady on my left yesterday told me she had a reaction on her second infusion, but the nurses took care of it and she was all fine and chatty so that was good. Lady on right had had a severe allergic reaction to Taxol so any Taxol or Taxotore is out for her. She is on carboplation. I hate this disease. As if us going through it and the SEs and all the pain and worry that comes with it is not enough, now this lady does not have the choice to take this medicine. I so hate it.
My mouth and throat are really dry. Time to do the wash again. I have a dry cough. MO said no infection, chemo might be doing it. Also, I get a bit tired if I am walking uphill. MO asked me to keep her updated if it gets worse.
Heres hoping lots of uneventful days for all of us.
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Hey everybody! I really need to stay off the internet cause I just keep freaking myself out! Uggg!
GaWarrior you are such an inspiration!
Urdrga71 and Weeeddie hope you both are feeling better. Engine104 hope your wife is feeling better as well.
Getting ready to do my 3rd (4) taxel treatments this Thursday. Going to try using L-Glutine for that horrible bone pain. Any other suggestions are welcomed as well.
Also expierecing tingling and pain in my static (both sides) when I lay on my back. Dont know if that is a side effect of Taxel or my nerves getting the best of me
I know I speak for us all when I say I can't wait to just be done!
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