Chemo starting June 2018
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I had my first DD Taxol Wednesday and have been miserable since Friday. My hands and feet hurt, mostly my feet where I have blisters and I can barely walk. I believe this is really more a SE of the AC but may just be exacerbated by the Taxol. I ache all over, bad low back pain, and have no energy at all. I am so worried about being able to keep on the DD schedule. To those of you who did DD Taxol, did you have good days or was it like this every day?
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Sherylann, I have these SE's too on DD Taxol. My DD AC was a breeze compared to this one. I think it's a combination of the effects of Taxol and Neulasta. Have your MO prescribed you some strong pain killers or narcotics. Also take Claritin. The pain lasts about 6 days for me but it gets better over time. My legs are still sore when I wake up and I am 8 days from when I started having pain.
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Sherylann - I had my first DD of Taxol on Aug 9th. I had to get a prescription for hydrocodone to help with the pain which eventually did subside. I sometimes still have a quick nerve pain in my right toe, of all things. My energy has yet to return, which is frustrating.
I ended up with a bad rash that went all over my torso. I took allergy medicine to help clear it up. Doing that messed up my sinuses. When I saw the MO Aug 23rd, he suggested we switch to Abraxane, if insurance would approve it. It should not cause the rash I had with Taxol. I found out on Friday that it was approved, so I’ll get my first DD of Abraxane tomorrow.
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Anyone else have nail beds start to really hurt from Taxotere? It would be such a bummer to be done with chemo only to lose my finger nails. Working with my hands hurts. I didn't realize how many things pull on your nail beds.
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Popcornme and RosieRed - AC was a breeze for me too. I was expecting Taxol to be the same if not better. I'm so disappointed. I do think I would do better with stronger pain medication. I will have to ask about that. I have taken the Claritin religiously but it doesn't seem to be helping as much this time around. My mom needs to have surgery in a few weeks and I need to be able to help her. I am a wreck this weekend. Emotions all over the place. Worried about everything.
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I too had pain for 5 days. I hope they can do something for me next time as I don't want to go through that again. My emotions have been all over the place too, Sherylann98. I think the pain wore me down. I've experienced so much fear over the past few days, shed lots of tears, thinking I am not going to get through this (even though my US showed that the chemo is working really well). I hope that I can turn my mood around and try to stay positive now that the pain is gone.
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I hate Taxol too. But I found acupuncture really helps with side effects and anxiety. Wednesday is #3 of 4. I hope I survive it...
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I think we are all getting to the point that the treatment and SEs are wearing us down mentally and physically. They don't really warn you how much the Neulasta shots can cause you pain. Insomnia from steroids and pain exhausting and the steroids themselves can cause mood swings. All in all, it just seems that they just want us to get to the other side each cycle. Be kind to yourselves ladies. Whatever we are thinking or feeling is okay. Hang in there.
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bgirl, I totally agree with you. I keep saying to my hubby that I’m tired of being sick and I’m sick of being tired.
Just gotta keep moving forward and after each treatment remind yourself that that’s one less you have to endure.
Hugs to everybody!
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bgirl:
I've definitely had my moments. This last cycle they lowered my dose and my side effects seem to be less severe in the middle of my cycle but I'm not very keen on having the dose lowered. It had to be done though because my CBCs weren't keeping up and my platelets dropped too low.
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rachelcarter35, yes I'm just starting to get the nail bed sensitivity! And numbness in my fingertips and toes. I am so counting down to the 2-week break before AC.
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bgirl-thank you for information on cannabis. Have decided to wait and see if side effects get way worse before looking into it. I agree that nail beds beginning to hurt...stubbing toe did not help. I so agree with you all-I am so tired of being tired. On the up side, forest fire smoke has cleared out of the area so air quality is again good. I thought of finding a mall or somewhere to walk indoors, but I live 40 minutes from about anywhere. I am so looking ahead to Halloween...last chemo day!
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I haven’t been on here because I have been worried sick since my last infusion. My doctor sent me to have thyroid and liver ultrasound done. I won’t know the results until my 5/6 infusion Thursday. I usually get it on Wednesday’s but it’s my husband’s b day so I asked if I could delay a day. I don’t want to spend his b day at a cancer center:(
I am sorry to hear so many of you are in pain. I am on tchp and I was lucky not to have any bone pains. First infusion I took Claritin for 10 days and then I took for 5 days and down to 3. I got lucked out with that. I just have difficulty with heartburn, thrush, and can’t really eat for 2 weeks because I have difficulty swallowing either because of thrush or my enlarged goiter. I feel like there is a lump in my throat and chest. I haven’t recovered at all this round. I still can’t eat well.
I just don’t know what I will do if I hear another bad news. It’s taking all I have to fight this BC. I am praying nothing else is wrong with me. 😭0 -
timetobebrave: Great to hear from you, I've been thinking about you a lot and concerned that you haven't posted. VERY sorry to hear of the new worries and pray that everything's OK. Please give us an update when you can.
I got good news today....the mass that had grown has now shrunk again and is now at 1.75 cm per doc's measurement. I have an ultrasound next week to confirm. Here's hoping...Had TCHP #5 today, usually get it on Wed. but doc is out of town tomorrow. Hoping this round is easier, #4 kicked my butt.
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timetobebrave70:
Sorry you are having a hard time.
I'm also on TCHP. I have been using Biotene toothpaste which doesn't burn and allows me to scrub my tongue well.
What have you been using for heartburn?
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Hi kat, that’s great news!!!! I am happy for you:)
Funny you went a day ahead and I went day back on our infusion. Lol. I hope #5 is easier for you. Just one more to go!!!
Wc3, I have been using biotene toothpaste as well. I scrub my tongue softly and it gets the whitish film off my tongue but then my tongue turns all sensitive and tongue & throat feels like sand paper. By the time I see oncologist, it’s not whitish and I have no sores so she does not wanna give me the magic mouthwash. I take prescription omeprazole for heartburn and it helps some.
I will update Thursday with my results! 🙏🙏🙏🙏0 -
timetibebrave, so sorry to hear about your US. Maybe your blood tests weren’t good and they decided to check your liver and thyroid just in case. Stay strong! Please keep us posted.
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I am taking prescription Rabaprezole twice a day and using Gaviscon for break through heartburn. Also took Nystatin an antifungal swish and swallow for the thrush in my throat esophagus for a couple of cycles - it really helped my eating. Got prescription from my MO.
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I was relatively strong through chemo and am 12 days out from my last TC and all of the sudden am so weak. My legs feel like 50 pound weights and walks feel near impossible. I have to stop and catch my breath. I'm so drained and frightened - just when I need to be gearing up for work again. I know that my blood count is probably at its low point but I didn't feel this way all the way through chemo until now. My ankles are a little swollen too. I'm going to keep moving and see how I feel in a week but ugh.
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rachelcarter35 - you should check in with your medical team. While the symptoms may be transient, just hitting a low, you want to make sure that there is nothing really going on. Take care of yourself.
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Rachel - I am feeling the exact same way after my last chemo 10 days ago. I Started feeling better, but the fatigue is terrible. It definitely adds to my anxiety about everything. I think I will call the doctor tomorrow.
Keep us posted!
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In about a month, I will be starting AC (I did Taxol first). So, of course, I am already worrying about it. For those of you who did AC first: what do you wish you had known ahead of time? Are there any preparations you suggest? Thanks!
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Hi bgirl, I got my infusion 5 and got to see the doctor..she wouldn’t prescribe me anything for my thrush. I have been scraping my tongue gently to get rid of the nasty white film and she thinks that’s what’s causing the pain. She told me not to do that and see what happens. Lol
Rachel and Libby , I hope you guys get your strength back soon!
Kat22, I did my bilateral surgery first cuz it was thought to be 1.7 cm and so the size did not qualify for neoadjuvent chemo. But after the surgery it was actually 2.6cm which means I could’ve had it. My lymph nodes were negative but my surgical margins were close not clear which is basically same thing. So I was recommended for radiation. I feel like i would’ve been saved from radiation if I had gotten the chemo first.
Oh yeah, I do have a good news. My thyroid is the same size it was before the chemo and liver is okay.
On the other hand I am spotting again!!! I had my period Half of my 1st infusion through 4th (2months) bresk for 3 weeks and again!!!! I hope I am just spotting! 😭😭0 -
timetobebrve: great news on the thyroid and liver! Sucks about the periods.....I don't have that to worry about, but I've been having horrible hot flashes since chemo started. I thought I was done with that crap! Different miseries, I guess LOL. Oh, and at this point my tentative treatment plan post-chemo is lumpectomy....and radiation. So you probably would have had to do that either way. I think it's standard protocol, just to make sure they get it all. I'm currently residing in the post-treatment hole that is Hell, I'm sure you're there too. One more. We can do this. UGH.
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Kat22, I just started having hot flashes too, but for me it's the first time round (they did warn me that chemo at 49 might bring on menopause). Ugh!
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yellowb - very helpful. I did only have bad thrush with the AC chemo, the Taxol has been better. Did they give you the recipe for the homemade mouth rinse. I did find it helped in my mouth. You don't swallow, so not so much with throat.
1/4 tsp of salt, 1/4 tsp of baking soda, 2 cups of water. Mix together - I used a reusable water bottle and left it on the side of my bathroom sink. It helps moisturize your mouth and the baking soda keeps your mouth at a healthy PH which helps with yeast infections (thrush). Instructions were to rinse every 1-2 hours if mouth sore or dry OR 4-5 times a day. Overnight only if you are awake. Also after eating, if you can. My hospital pharmacy gave this recipe handout when I went for my medication consultation. Oh they recommend making it fresh daily.
Hope you get some relief. I know they look at these symptoms as transient, but the still make us miserable.
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I did the baking soda salt mix too. Helped.
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Aaaargh..... I'm 2 weeks after last TC and thought I'd gotten lucky since I still had my eyebrows & lashes (though thinner) and nails, etc. but today I noticed that my toenails are turning black and my fingernails are brown and probably on their way to black - yikes! Anyone else having "late" SEs like this - I was really hoping I was at the end but my MO says to give SEs another 6-8 weeks (!) and then if I still have things (like the watery eyes that won't stop or the itching from the Taxotere) then she'll deal with them. Is it just me? Anyone lose their nails or just discoloration????
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cc738nj: we are on EXACTLY the same schedule and drugs. New SE's after we are done?! WTH - such a bummer huh? I was devastated and cried all day about 3 days ago wondering if I really wasn't going to be okay at the end of all this. These all started this last week:
1) My nail beds just started hurting about 5 days ago. They are not black but yellow and definitely not happy. OUCH
2) I'm all of the sudden retaining a lot of water. My legs and ankles are swollen. I've done the research and this can be a SE from Taxotere or peripheral neuropothy and usually goes away.
3) my eyes are gummy and tearing constantly.
4) I'm also newly out of breath when I hike.
It's helpful to hear your doctors advice. Once again we have to be patient and see what happens.
Sorry you are going through this. I read on one of these forums to put band-aids on the nails that are loose to prevent them from catching and ripping.
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I'm having the same (not the nails, but the others). I had #4 of TCHP about 2 weeks ago and am so unbelievably tired. My eyes are watery and gummy and all of my muscles are weak and I get out of breath walking a short distance. My doc says he may lower the dose of my last two rounds. I also have burning in my hands that he said is likely neuropathy and told me to take glutamine. Let me know when you start feeling better.
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