Starting chemo April 2019
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MountainMia, thanks for the new post.
As far as the cold therapy for the hands and feet is concerned, I bought ice pad for hands and ice socks. However, due to the initial time I spent in the oncologist's office, the ice pads became warm. I asked the onco nurse, she told me other people just use "baggies" meaning they just put ice in a bag and put their hands and feet on top. I told her I planned to buy a few plasitc shoe boxes from walmart and use a cooler to bring two lbs of ice (they have no interest to provide me ice. I tried) and will have husband fills the shoe boxes for me. I will use a plastic bag to cover my hands and feet and put them in the shoe boxes. I hope it works
santabarbarian can you share the link for the freezable cap? I have been reading fasting and want so much to follow but I have diabetes and afraid it may affect my sugar level.
Farfalla6 I thought you already have echo done. I just hope the worse is over and you can move on to the next phase.
PrincessofMeh, hope you feel better soon. I kept on reminding myself to go to the gym or the walk because of your pokemom walk. Did you get to walk the 2 hours?0 -
Hey all,
I have been reading and catching up on everyone's progress. Hard to believe we have been at it for two months. Sometimes seems way longer than that. I haven't posted lately cause I have been feeling like a debbie downer lately. I had my last a/c a week ago and expected to feel much more celebratory but it just highlighted how much there is still to go. Tmi...I don't know if my frame of mind has to do with the fact that I did not have a period this month and hormones are out of whack or what but I hope to be back to a positive frame of mind again soon. I am hoping for less side effects with taxol. I have been lurking on the Feb chemo board and it seems most have tolerated taxol better than a/c.
I am thankful to you all for sharing your experiences and being able to come here and share mine...the good, bad and the ugly of it all!
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hi Bam320!
I am right there with you expecting to have felt celebratory after AC, but i was so knocked down by complications (leg swelling, elevated liver enzymes, then a cold with fever needing work up) Maybe it's been all of that of not being able to get back to any kind of normal, and unpredictability of my being able to work, but I've been in a TERRIBLE mood, easily tearful, down, dreading Taxol more than the AC< not because it will necessarily be worse (though it might) but because its another long slog. I miss being healthy and enjoying the outdoors and feeling strong. I miss enjoying my food. I miss my body's reliability.Interesting about the hormones: I also wondered about that. The only good thing about this whole thing is that my 48 y.o. skin actually looks better-no period chin pimples and it looks..exfoliated I guess? smoother? but pale as chalk, with a grey undertone. I needed a second echo (after the pre-AC echo) because of edema and breathlessness but it was normal, I just found out and am so relieved. i guess we just have to hang in there. ..
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bam320, I’m not surprised by the feeling down. We all have busy productive lives before and now everything is messed up! You can borrow my Debbie downer anytime. Maybe a cry and release is needed.
Farfalla6, I agree, the normalcy of going outside for a hike, enjoying a nice dinner, either out or at someone’s home. I seem to be saying a lot lately, what does it matter where or what we eat, such a waste of money.
Wishing everyone a smooth week with no complications.
I’m ready for the bed again, only been up an hour.
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Hi Bam 320 and Farfalla6!
I finished my 4 rounds of AC and had my 1st of 12 rounds of taxol last Thursday. For me the side effects have been minimal so far. We went out in the boat on Saturday and hung out with friends. I felt like I actually had a first normal weekend since all this started. I was exhausted on Sunday but that was okay. I understand the fatigue may get worse as treatment progresses but so far so much better then AC. I hope you both have the same experience!
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bam320, I'm not surprised by the feeling down. We all have busy productive lives before and now everything is messed up! You can borrow my Debbie downer anytime. Maybe a cry and release is needed.
Farfalla6, I agree, the normalcy of going outside for a hike, enjoying a nice dinner, either out or at someone's home. I seem to be saying a lot lately, what does it matter where or what we eat, such a waste of money.
Wishing everyone a smooth week with no complications.
I'm ready for the bed again, only been up an hour.
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Hey gals, this suggestion may be too soon but tuck it away for the future. If you ever wanted to try something new, apply for Casting for Recovery. It is in all 50 states. I just attended an all expense paid weekend with 14 other breast cancer survivors (in every stage) to learn to fly fish. It was the most organized, supported, informative, fun weekend I have ever had. I am still in treatment and was a newbie compared to others and I learned so much! And then there was the fly fishing which was so fun to learn and relaxing. Reach out to me if you have any questions. https://castingforrecovery.org/
Hope everyone is doing ok!
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We walked an hour and a half, then had to sprint for the car as it poured down buckets of rain on us, LOL.
I"m sorry you guys are feeling down after finishing A/C, but taxol is loads better. The first half of taxol was wonderful. Last half, considerably less so LOL, but hey, enjoy it while you can, I say.
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hi everyone.
For cryotherapy I have 2 pair of six with ice packs. Freeze them and place in a small cooler for hands I use 2 Cryo-Max
CryoMAX Cold Pack, 8 Hour Reusable Cold Therapy Ice Pack for Elbows, Knees, Neck + More, Medium, 6" x 12" (1 Count) I bought on Amazon (well everything was bought on amazon). It has a strap that I tighten around hands. Again. It goes in my cooler (once frozen) on spa day until ready to use. The chemo nurses are used to me bringing in my cooler and they tell me 15 mins ahead of taxotere start. My frozen six I have to seithch out mid way, but not my hands.
Update on me. I am septic and in the hospital. It started with hard chills Sunday night and high fever. Monday morning went to MO office and saw NP. Was admitted right away. Monday is much of a blur as, I was pretty lethargic. Couldn't lift my head or stand very well (just enough to pivot to a wheelchair or commode), then back to lala land. The worst day ever. I was pretty frightened. Naturally, I'm neurogenic (neulasta just kicking in today it seems). Fevers keep spiking. Infectious disease doc thinks thinks the infection source is possibly related to my port. Multiple positive cultures. Sooooo, infection in my blood. On lots of IV antibiotics. I think my port's gonna come out as soon as my white count improves. Will get a picc line for my continued iv abx at home. And use that for my LAST chemo treatment. It's been a crazy few days.. that SE punch only kept me down a couple days (flat on my back down). Fog is lifting. I'm back up!
Rock on!
Best to everyone! Hope you have a good Memorial weekend.
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robin redbreast, hope you are feeling better already! How scary! I had a high fever last week but because they had a source (RSV from my kids' cold) and a normal WBC I didn't have to be hospitalized. But I know that fever lethargy. what were the cultures positive for?
Sparkelgirl and Princess of Meh, hoping to have similar Taxol experience but I had such a bad few weeks with AC that I am preparing for the worst. also, I am so fearing the icing of hands and feet for at least 3 1/2 hours. I have terrible reynauds and always had cold intolerance and I'm not sure how that's going to go. I'm FINALLY feeling better from all my recent complications and to know I am being treated again on Friday feels really scary and depressing. But of course I also want to get things done and not have any treatment delayed. Today I am back at work, feel pretty normal, and can taste and enjoy food again.
Good luck to all of us as we deal with our ups and downs
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robinred, I'm sorry to hear you landed in the hospital. I read quickly so may have missed but when do you go home? Prayers the infection is cured.
Farfalla. You've been through a lot. Hang in there, hoping that Taxol is easier.
Bam and farfalla, I too have been very apprehensive since finishing AC. Forced menopause has to be part of it, at least for me. I have had some sleepless nights and night sweats. I'm just not my positive self.
I think I am a little overwhelmed to start these 12 Taxol treatments Friday. I spent too much time on that Weekly Taxol thread and now I think I'm gonna have every SE those ladies complain about. Right now it seems this phase of treatment won't ever end.
I have appointment with MO tomorrow afternoon and he's a great cheerleader. I hope he can lighten my spirits. I did pretty well on AC, he's already told me he thinks I will breeze through taxol, relatively speaking. I've been saying lots of prayers.
OK, we can do this, we can do this!
Well wishes to all here! MM
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Redrobin, that's so scary! Hope you are on the mend!
Ladies, I'm on taxol now. May have to order those gloves. No signs of neuropathy so far, but I had a little neuropathy at the end last time so strikes me that anything I can do to try to head that off this time might be wise. But really, I'm telling you, the first half or so of taxol is great. So much better and easier than AC was. I won't lie, the last 3 weeks were hideous, but the beginning? Oh no, that was lovely. No SE vibes heading your way especially, Far, you've been through the wringer already.
Anyhoo, my day 2 and I'm feeling pretty good actually. They cut my steroids in half and although I expect to be more tired, I think it'll do me a world of good. Being that jazzed out of my gourd is not fun. Making chicken paprikash (which I can't spell, lol) for dinner. Friends and fam on social media are funny -- say they can tell my level of blech by what's for dinner. Today, I'm a wee bit fatigued, but my level of blech is right around zero, LOL.
And because I can't resist showing it off, this is what I mean by diamond painting:
Just framed Van Gogh's Starry Night this morning. Hubby says this one has 35,000 diamonds in it. O.O I may do Cezanne's Pyramid of Skulls next. Or a full drill clock kit. The clock kit, I already have, the other I'd have to order plus the frame. So probably the clock kit, let's pretend I"m trying to be good, shall we? Hee.
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Random question --
Are people giving you stuff clear out of the blue? I'm not talking about freebies at your docs' offices or people donating hats or whatever to the cancer center. Family and friends. Mind, this isn't my first rodeo so I've seen this before, sending gifties is just your friends & family's way of showing they care, but...People are sending me money this time and it's starting to weird me out. Of course, cancer treatment isn't cheap and yes, we're taking a financial hit because of it. But we aren't poor.
Actually, I just remembered that last time 2 friends sent me gift cards, which was a nice surprise. I guess I don't look at gift cards as money. Gift cards are shopping sprees! LOL.
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Robinredbreast - How are you feeling now? I am sorry you had to go through that on top of everything else.
Farfalla - here's hoping that the worst is behind you. You have been through enough! Sending good vibes, prayers, and thoughts for today!
Ilovevermont - I registered for cast for recovery. If I get chosen it will be in Sept right after I have finished radiation and would be a great way to end.
DebraC - your straw hat looks great. I've got to figure something out cause it will be a long hot summer in these wigs of mine!
Princess - Yes, people have offered money or to start a gofundme for us and that was a big no! My self-reliant self was kind of offended by the suggestion. What we have gotten that has been great is a lot of gift cards to restaurants from friends, co workers and family. They come in so handy during my down days and that has been very helpful. Love the painting too!
I know I am missing others but am off to work right now. Thanks for the words of encouragement after my debbie-downer post. I am feeling a bit better mentally now and hope it continues.
Hang in there everybody!
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this life threatening/ near death experience has forever changed me. Still in hospital. Earliest possible discharge next week.
Hope you all have a great weekend.
Rock on!
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robinredbreast,
So glad your MO admitted you quickly and you got the intensive treatment you needed. Turning septic can happen so fast. I remember when it happened to mom. It was so scary. Just rest and let the docs take care of you.
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robinreadbreast, Im thinking of you and hoping things are stabilized and that you are feeling better.
Thank you, Bam320, for your kind wishes, and I send the same to you.
MsMarie: How your your first Taxol?
I had my first Taxol (dose-dense, every two weeks time 4) this afternoon and I was relieved by how uneventful it was. No allergic reaction (yet, at least, they say to watch for rashes), icing ended up being far less painful than I thought and I was able to keep my hands and feet in baggies of ice (provided by and changed by the nurses when melted) for 3 and a half hours without a break (they recommend doing it for 15 min before and after infusion). I feel a bit wired by steroids. 5/8 done!
My anemia is getting worse--my hemoglobin was 8 today and they start considering transfusion below 8, but I'm not more symptomatic than I was at 9. My resting heart rate is much higher.
To all of us getting through our side effects, complications, and hoping that a tough time is followed by better ones.
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robinredbreast, glad that you may be discharged early next week. Hope the worst is finally over.
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Does anyone else check their head daily for signs of growth knowing full well it is too soon for it to be happening?
How about small sores on your skin? I have a couple on my legs. Kind of a dry red/brown spot. I will talk to the doctor about them this week.
**Robinredbreast - good vibes, thoughts and prayers, etc for you.
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farfalla, my first taxol was uneventful. Like you, my hemoglobin steadily dropped during AC. It got as low as 7.4 right after 4th AC. I rebounded some to 7.9 right before first taxol. I'll be getting an Iron drip. I don't have too many symptoms other than getting winded going up stairs. I hope I can get my levels up without a transfusion.
Bam, yes I am having some little bumps that are itchy, not a rash, just random on legs, arms, even my chest. I didn't find that listed as a SE of AC so I'm perplexed.
As far as hair, I kept about 30% on the AC. Still capping on the Taxol. I hear some regrowth happens for some ladies on taxol. I will report if I notice anything.
Princess, thanks again for chiming in on your taxol experience. I hope I can just knock these out each week. 11 more.
Hope everyone has a restful weekend. MM
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Bam, I'm not checking my hair other than being glad I managed to hang on to a little peach fuzz this time. Marie, I wouldn't say I kept as much as 30%, more like 10%, is very thin and scraggly, so what you're doing must be working, No rash, but I've noticed I bruise easier.
Red, I'm so sorry you're going through this and you have to stay in the hospital so long!
Because I have absolutely zero respect for what's supposed to be my bad day...Neighbor invited us over for a potluck yesterday so I went to the market to buy ingredients for antipasto, ended up finding strawberries and blueberries for 59 cents each. This girlfriend does not turn down 59 cent berries, steroid crash or no, LOL, so I bought a dozen strawberries and half a dozen pints of blueberries. Half are freezing on cookie sheets for me toss into freezer bags later today to bake with throughout the summer. Making freezer jam and some desserts today with the rest. What makes this completely hilarious is my legs are glue. Muscle fatigue on my days 1-3 after I stop steroids and of course, SEs tend to be cummulative so this is getting worse as I go, I get the burning of muscle fatigue when I go off steroids. Bounces back some in the lag between spa days but the first few non-steroid days...Don't know how to describe it, really, but my legs are just gluey. Anyhoo, there I was yesterday, going up and down the stairs 3 times to put berries in the stupid chest freezer. What kind of fool makes jams and a buffet of berry desserts during bad chemo days? This fool. Yeesh, I'm a moron.
ETA: Yep, definitely a lesson on listening to your body and respecting your limits. Daughter's here for the holiday weekend and mentioned doing the melt-crayons-on-canvas thing today (which we've been wanting to do when she was visiting, but kept running out of time) and I think I can handle that. I'm going to have to invest a day or two in rest and recuperating otherwise, though. My legs are just done from the muscle fatigue. Done, done, done. Fortunately, my brother offered to cook dinner today (now Monday). I can spend today and tomorrow doing nothing more taxing than crocheting and/or diamond painting...anything that doesn't require me to move, really, is cool. Give me a bit of time to bounce back a little. Ugh, I feel horrid.
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MsMarie, What was your pre-AC (or "normal" ) hemoglobin level?
Does anyone know whether chemo (in particular AC) would a decrease of hemoglobin?
I was between 10 to 11. Then before AC#2, on May 14, it went down to 9.1, the PA asked me to see a gastroenterologist even they did an exam and couldn't find blood in my stool. I knew the effect of going to see a GI doctor is to do a colonoscopy which I had three years ago and if he could not find blood, he would ask me to do a endoscopy (as he did three years ago) and then another exam using a camera to pass through my body (did that three years ago).
On Friday, I went back to see my PCP, she did another blood test and my hemoglobin was at 8.9, she did another screening to confirm no blood in my stool. I told her I did not understand why I have to see a gastroenterologist and she managed to talk to my oncologist that I do not need to see the GI doctor. However, I felt that they wanted me to prove that I do not have internal bleeding before they consider anything.
My vitamin B12 jumped from the normal of around 500 to 2902. I am nervous.
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faco3, AC Definitely affects all blood counts and destroys RBC ( so, anemia) as well as WBCs. My hemoglobin is usually 12, now it’s 8, they also asked me about any bleeding but said it’s likely the AC and should slowly improve on Taxol. But I need a recheck in between treatments.
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fac, I had blood work done in January before my lumpectomy and HGB was 13.6. Right after first AC, down to 11.5 and just kept going down. 7.4 was lowest but latest blood work one week after 4th AC it had gone up to 7.9. I hope I'm on the rise now that I'm on weekly taxol.
I'll get blood work this Thurs. I have been eating lots of iron rich food. I still get winded on my walks so I'm sure it's still lower than it should be. I just don't want a blood transfusion. I also hope my WBC stays in normal range. They would always crash for 7-9 days after my AC and then the neulasta would kick in and I'd get a boost the second week.
I sure hope the chemo is working on any cancer cells as hard as it is on my good parts. 😬
Here's to better numbers for all at next blood draw! MM
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Farfalla6 and MsMarie, thanks of mini education. I just hope my oncologist could tell me before I found out here.
AC#3 today and it was uneventful. Finally they had someone who knew how to use the port and I did not feel any pain.
Before the infusion, I met with the PA (I had been meeting with the PA, instead of the oncologist since AC#2) and it was him who asked me to see a gastroenterologist when he found out my hemoglobin was dropping. It put me in a difficult situation, if I do not check with a gastroenterologist, it seems that I am not doing what I was told and supposed to do, but then I had a bad experience with the gastroenterologist and could see what would be coming. I specifically raised the question to him again today, then after 30 minutes, the oncologist came in (without the PA), the first thing she said was no need to see the gastroenterologist as the drop in hemoglobin would likely be due to the chemo. The range that I have is within range for the drop during chemo. I told her my friend said that it would go back up during taxol. (Thanks Farfalla6, my oncologist thought I was so "smart" ). I really think that they did not know when I was in AC#2.
Even I am in AC, I am using the cold pads for hands and cold slippers for the feet. Part way in C, I needed to go to the bathroom and had to stop the cold therapy for hands and feet and did not put them on when i returned. I knew many people did not believe using cold therapy until Taxol but I have been using them. After the infusion, I felt that two of my toes were cramping together. Keeping my fingers crossed.
bam320, I did not check for sign for the hair coming back, rather I am checking why they did not all fall out. I had thin hair to begin with, but after 2ACs, I think I have about 30% of my hair remaining. No sores on my skin.
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Hello everyone,
Heading off to number 3 of 4 TC treatments in a couple hours so just spending some time catching up, getting laundry done etc. I haven't been posting too much over the last couple weeks. But I do try to read through everyday, as it always provides inspiration. We are all so strong and resilient!
I am still working full time (with 2-3 days at home per cycle work/sick days) and trying to get to the gym 5-6 days per week. Add in the extra fatigue and I am basically on the couch everyday after work and to bed quite early. But I am feeling pretty good and found that other than the building fatigue I managed the other side effects pretty well. Don't get me wrong, still have lots going on, dry mouth, UTS's dry skin and nails etc. Just trying to manage it all and it is in no way easy as you all know.
I don't have a copy of my blood work yet but was told my counts were good to proceed today. I will get a copy at the hospital today and am curious to see where I sit based on the conversations above. I didn't cold cap and have lost substantially all of my hair. I kept a little. Picture an ostrich head and that is pretty much me. I do miss my hair and now 75% through this treatment I just want it back. I do check to see if it is growing, although pretty impossible at this point. I don't do the ice on hands and feet as I have Reynauld's syndrome and that would be unpleasant for me, but have not had tingling/numbness so far but we still have 2 to go so fingers crossed!
Robinredbreast, I am very sorry to hear of your infection and hospitalization. I really hope that your are on the mend and starting to recover from that scary experience. My thoughts are with you and definitely sending positive thoughts your way.
Laura
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I had taxol #1 yesterday. It was uneventful but LONG! I feel so much better than I did after a/c and it is great not to have to take the anti-nausea meds and steroids for days after. They did say bone pain can come 3-5 days out but I am hoping that does not occur. It feels great to be on the downhill slope of my chemo treatments! I did ice my hands and feet. The nurse was not thrilled about filling up the bags that I brought for some reason but she was generally kind of crabby. I may get the mitts or just bring my own to avoid that. My MO feels that icing may help with preventing nail changes but not neuropathy. For neuropathy he recommends 15g of l-glutamine powder twice a day so I have been doing that.
Fac03 - glad that your infusion was uneventful. I was glad to see that at the last one your expressed to your nurse how you were feeling about your treatment thus far. Good for you!
I hope everyone's blood work comes back good so that treatment does not have to be put off and that no other procedures or interventions are needed.
Robinredbreast - I hope that you are home or soon to be!
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bam, good to hear your first taxol went well. I guess you are doing dense dose. I am on the regular 12 week dose. I had no SE, no aches or pains. Hope the same for you. I iced hands and feet, and with my cold capping was quite miserable for well over an hour.
I am also taking L glutamine, along w B-6, B-12 and alpha lipoic acid to protect against neuropathy.
I get new blood work first thing in the morning. I hope the hemoglobin and RBC see some improvement.
Robinred, give an update when you can, have had you in my prayers.
Thinking of all this week getting treatment. MM
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So I am day 6 after dose dense taxol #1: the only side effect I had so far was really bad bone pain on day 3; I hadn’t had any bone pain before even with neulasta; but it was gone the next day. So far taxol does seem easier and if I didn’t have extreme fatigue from anemia I’d feel pretty normal.
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Just popping in to report my HGB was well above 8, iron levels are good. No iron drip for me in tomorrow's infusion.
HGB and RBC starting to rebound post AC. It will take time to get back to normal range. I'm still huffing and puffing on my walks, but I can tell I am able to walk a little faster.
Will knock out taxol #2 of 12 tomorrow. August can't get here fast enough! MM
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