Starting Chemo in February 2019
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Paloma, I had the unfortunate luck of starting this whole journey anemic. As far as I know, I had never been anemic before so just run down from surgery I’m guessing. But yes, anemia is one side effect that can happen as chemo goes on as those red blood cell counts drop. I am taking extra vitamins with iron and still can’t shake it.
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DeeDee,
I realized after I posted that it was an old post (duh...). I have moments when I’m fine and moments when I’m not (like can’t read dates). Glad you are doing well x 2. ! Thank you so much for reaching out.
Lauren
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paloma I had a couple of funky visual things and I was reminded of an ocular migraine. I no longer get migraines (mine were due to a bite problem, subsequently got ortho and fixed it) but as nerve issues are a SE of chemo, I figured the ocular nerve was probably affected...
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Hi Ladies
My mom had her 2nd AC chemotherpy yesterday. She is feeling a bit off. She started taking Clartine two days ago and she will continue to use it for a week to avoid the SEs of the neulasta. She says that the SEs of the neulasta aremuch worse than the AC. Anyone agrees?
Furthermore, the pathology report ofHER2 equivocal. What does that mean? Will she get targeted therapy? Anyone had a similar experience?
Hoping for the best!
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Hey Kkmay - I'm not on the same protocol as your mom, but the 1st round of Neulasta was horrible. I took the claritin and tylenol and still was in significant pain. It only lasted 2-3 days, but it was rough. I just got my 2nd neulasta this past Friday and have only had minor pains this time. Maybe it will improve? Hoping she's getting a little relief.
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Good morning everyone. This Thursday (3/7) will be my third round of AC. I thought my second round was mild with hardly any SEs. No nausea, not really any bone pain from the Neulasta but by day 6 I was running a slight temp again and generally feeling tired. Day 7 I developed a fever, called the cancer center and they had me come in right away for labs. WBC way down again at .2 this time. Back to the hospital (where I still am) to get iv antibiotics. The first two rounds have landed me in the hospital with neutropenia. My oncologist is thinks my cocktail is too strong and wil adjust for round 3. It might mean longer chemo with smaller doses, I don't know. I just don't want to end up in the hospital each time trying to get my counts up. I want to be able to live a somewhat normal life; all relative I know with this journey.This time they changed how they treated me, giving me a daily white cell booster shot. Oh and I developed painful mouth sores this time around even with brushing and rinsing like a fanatic. Eating was agony! The hospital made up some Magic Mouthwash. What a lifesaver!
Good luck everyone on your journeys. I’m reading everyone’s stories. Lots of good tips
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Thank you ladies - I appreciate you all sharing your wisdom & experience. It’s so strange how SEs can vary from round to round - different ones can pop up, subside, intensity can change. Our bodies are wondrous things.
My main SE in round 1 of tchp has been my gi tract. Nothing horrendous (thank heavens), just discomfort and a touch of the D. Might also be getting a uti (bit of blood in the urine from time to time). But MO says to wait on antibiotics unless there is pain/burning/fever. I am a fan of taking as little as possible, if I can avoid it.
Wishing you all a happy and easy day
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Today is the 6th day for me since the first treatment
The steroids and anti nausea meds definitely got me jacked up/insomniac/loopy Thursday-Sunday. All I took yesterday was Zofran and clariton.
I haven’t taken any medicine today but I don’t feel like I’m fit to drive. My head still feels mixed up. My reaction time is super slow. Anyone decide to quit driving while going through chemo?
Is this just the usual effects of chemo — maybe chemo brain?
I’m also struggling because I cannot keep up at work.
Anyone else feel this way?
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I’m sorry to hear that Hope012119. I imagine it will take another day or two for your body to clear out some of the meds. I haven’t stopped driving (8th day of rd1), but I gotta say, I feel much more vulnerable. Stay safe out there.
I have not yet started back to work (I’m a massage therapist). I’ll be going back tomorrow. Im definitely cutting my schedule down since I don’t know what kind of stamina I will have. Good luck, Hope012119 - your energy will return soon
Man, the mouth sores are beginning over here. I’m stepping up the mouth rinsing (with Biotene mouthwash), and hopefully that will stop them. Any other tips? Also, when are you supposed to do the ice chips to avoid this?
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I re-did my liver tests and gratefully the levels came back down. The AST is within the expected range, but the ALT is still slightly above the maximum. It is 57 but the upper limit of the range says it should be no more than 41. Before it was 134, so I'm guessing I am okay to do chemo tomorrow.
A friend of mine is talking about Rick Simpson Oil. Does anyone know what that is? I am going to do some research, but thought I would ask here.
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I know... It is a THC heavy cannabis derivative, and the protocol is 60g in 90 days which is a huge amount of THC. To give an example, an edible will make you high with 10 mg THC.
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Hey Paloma,
I had over 15 seperate mouth sores that appeared right about 1 week after my first infusion with TCHP. My lips were really swollen also. The second time around, I am fairing better ( i'm day 7 post round 2) and so far so good.... here's what helped me...
I sucked on ice chips as much as I could during Taxotere and Carboplatin (I didnt know to do this first round). I believe Taxotere has up to 50% SE of mucositis (mouth sores). I also started L Lysine supplement daily. Tons of Aquaphor lip balm. Salt(1/2tsp) and baking soda(1/2 tsp) with warm water (8oz) gargles (do this 4-6 times a day).
Magic Mouthwash (3 ingredients).... ( this is a Rx you can ask for)..... You can't get viscous Lidocaine OTC. The other 2 ingredients are OTC... 1 part liquid benadryl and 1 part liquid mylanta to coat your mouth. The benadryl and mylanta without the numbing agent is def. better than nothing.
I hope this helps you. Mouth sores are terrible! Mine lasted 2-3d FYI. btw- you can soften your toothbrush by running under hot water
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santabarbarian-thanks for the info. I had never heard of it before. I wonder if any studies are being done on it in the states where it's legal. I found a thread on it somewhere in here, but it still sounds mysterious.
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Thank you, IdRatherBeBoatin! I’m going to make the rinse and use it constantly, and I’ll have some ice for round 2. I hope your mouth fares better this time. I’m about 3 weeks behind you, so I’ll be keeping a close eye for you here. Wishing you a peaceful week.
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Hope-- I know what you mean about driving. I feel like I am foggy a lot of the time so I have limited my driving to local. I have someone else drive if I have to go somewhere far. Luckily I only work 5 miles from work, so not too bad.
Sorry to hear about the mouth sores. I've had a couple of mouth issues but nothing that bad.
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I'm 15 days out from my first TCHP infusion and yesterday my hair started coming out. It's worse today. I'm going to call my hairdresser to see if she can get me in for a buzz cut. My wig won't be ready until next week so it will be hats and scarves until then. It’ssupposed to be really cold here this week!
I can relate the the mouthsores. I got those about 6 days following my treatment. They lasted about 3 days. I used Biotene toothpaste and rinse. I tried 3 different toothpastes and they all burned my mouth. I use the softest toothbrush i can and run it under warm water before using. Helped a lot. I lost my taste about the same time.
Anyone else getting nose bleeds? Not so much bleeding but when my nose runs (all the time!) sometimes there is bright red blood. Not a lot but still...
I'm not a great driver to begin with and I hate to drive anyway. I only drive when I need to and stay close to home. I have a great friend who is always willing to Uber me around!
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Gonnabeatthis... I was just going to ask about nosebleeds too! I’m 6 days out from round 2 of TCH. I didn’t have this with round 1. It started a couple of days ago and is worse today. Every time I blow or wipe my nose, which is a lot, there is red. It’s not it a huge issue but is really annoying. I’ve got a humidifier running in my bedroom to try to keep the air moist but not sure if that has any effect.
Starting to get mouth sores again. I got this with round 1 about this time. I ordered several ultra soft toothbrushes from Amazon, and use a new one for each treatment. I do the salt + baking soda rinse as well. I also have a sore throat that comes and goes.
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Kathy,
Same with me, just enough to make me wonder what is going on. We have a humidifier in our bedroom as well. I never know if it will be red or not. I always have tissues close by!
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My nose runs constantly and occasionally I have blood, but not really a nose bleed.
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Nose bleeds and runny nose both normal. Our platelets drop due to the meds, which increases our chance of bleeding. Should improve with time as our platelets recover. As for the runny nose, we lose nose hairs from the chemo as well, hence less to collect secretions. Lovely huh ?!?! Continuing the claritan may be helpful. Otherwise, tissues and more tissues! I've been dapping neosporin up my nose to serve as a barrier to all the germs going around.. Also helps lubricate nasal passages. Something to consider
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An alternative to ice chips is bringing a frosty smoothie or a fruit popsicle... I had my ice chest so I just tossed those into it.
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Yes to runny nose. Yes to eye twitch. Yes to a sore throat.I think Vaseline in the nose might be helpful too - both as a barrier and to keep it moist.
I bought my wig a few weeks ago & got my haircut to match the wig. Planning to get a “crew cut” in 7-10 days. I’m nervous about wearing the wig to work, but feel like I have to do it. I think my going through cancer treatments is too heavy a burden to lay on my massage clients. They are there to relax, after all.
Going to lie in bed all day in preparation to go to work tonight for s few hours. Wish me luck!
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Not being into a wig, I did some cool erykah badu type head wraps. There are youtubes on how to do them... it is not hard. I had several strangers complimenting me, thinking I was much cooler than I am!
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Hi warriors!
First AC treatment today. The nurses were very nice and the experience was not unpleasant. Have a bit of a headache, but doing okay. Feel kind of full of fluid and I was surprised I was hungry. Still don’t know how I got here, but glad I started.
Lauren
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hi warriors,
Silly question, but so afraid to make a miss step (reminds me of being pregnant.....sort of). Do you take Tylenol fro the headaches ? I like Advil (which the literature I received said I shouldn’t take), or should I tough it out.
Thanks, Lauren
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Hello fellow warriors! Regarding the bloody noses, I started getting them after my first few rounds of Taxol. I started running a humidifier in my bedroom 24/7 and use gel nasal spray before bed, which helps. Now I have the constant dripping nose, which is really embarrassing. I might try putting a little aquaphor in my nose to see if it helps. After 12 rounds of Taxol and 1 round of AC, it looks like my hair is starting to grow back. I’m leaving it alone for now and hoping it doesn’t fall out again before I’m done. AC round 2 tomorrow. We got this!!
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I take Tylenol regularly for headaches and that is what they give me at the cancer center if I need it too.
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Hi Ladies!
Today is day # 19 post AC chemo # 1 and day # 4 post chemo # 2 for my mom. I would say that 70% of her hair is gone, and she is very depressed about that. This SE has caused her the most physiological effect. I think because it is a constant reminder that she has cancer. She has started wearing scarves and hats all the time. She can’t wait to be on taxol because she heard hair can grow back on taxol. Is that true?
As for her tumor, she says that it started peeling a lot. I’mnot sure what this peeling signifies. Any ideas?
-Laurencl, my mom takes Tylenol for headaches and body aches most of the time. Sometimes , she takes ibuprofen. She alternate between them.
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Some people have said they start getting a peach fuzz kind of hair on Taxol. I am sorry she is having a hard time with hair loss. For me that was the easiest thing only because I can't see my head so out of sight, out of mind. My fatigue is the hardest on me, I was in bed at 7:15 last night! I hope she can find some peace and know we are all pulling for her!
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