Starting Chemo May 2021
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BLMike
Sending positive thoughts your way. Make sure she stays well hydrated today.
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TXlorelei,
My chemo teaching was with a nurse practitioner. She reviewed the chemo drugs and side effects and provided a copy of the drug information, which the Doctor had already provided but good to have a second copy. She covered mouth care, white blood count and explained my blood test results and what to pay attention to, recommended i start taking iron as my levels were low, reviewed when and how to call the doctor after hours. She advised I needed and oral thermometer, drink at least 80 ounces of liquid a day, take claritin for bone pain. same claritin for allergies. She advised to flush twice and clean tiolet seat after use for a week after treatments to protect others and myself from toxins in body waste. She called in my prescriptions and told me how to take them. What to bring to treatment which was basically whatever made me comfortable, icepack, food, snack. Visit would be over 5 hours. She explained what to expect that day: give blood, see doctor then start pre-meds then chemo drugs. What happens day 2: I have to go back for a shot and check my levels and see how i am doing. She reviewed my medications and vitamins and indicated what I needed to stop taking like vitamin C. Get Pepsid, Biofreeze and any medications I may need to cover side effects of drug. No motrin or ibuprofin, no grapefruit. Dietician added to have Ensure protein max on hand as well as to take Healios Lglutamine suppliment daily. She did not cover port care. She said the nurses in the treatment room will cover that. Hope that helps.
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BLMike, keep us posted
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All the good info STJA16!
Well it's been about a week for me. The lingering effect has been fatigue throughout the day, like I just ran an 8 minute mile, and small effects happening daily has been itchy skin, especially around my lips. I take a nap when I tire.
If anyone here is still menstruating, please be sure to change and wash frequently. I didn't think much of it when my cycle started and went about as I usually would, waiting for the pad to soak before changing. I didn't think that the area down there would get sensitive, likely because of the chemo meds still in bodily fluids. So, now I'm being extra careful. I wish I had been proactive instead of reactive.
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After much anxiety, Polly had her first dose of Abraxane and Zometa today. The fear of the unknown was worse than the treatment itself. She had no problems having the IV through her port (which has given her a lot of trouble). To keep her feet and hands cold, we bought Elasto-Gel Therapy mittens and NatraCure Therapy socks. The socks worked great and stayed cold the entire time but the mittens did not. I've got to figure out if I'm doing something wrong in the freezing/storing/transporting process with those mittens. She was told to expect the possibility of flu-like symptoms from the Zometa tomorrow and then some possible nausea and fatigue on Sunday/Monday. I'll report back how things go. Thanks for the support ladies, and best of luck on your chemo journey.
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Due to weirdness in my blood work, my first treatment did not happen today. They’ll redo the tests next week- hopefully things will get sorted out. We’re postponing the Chemo until the 21st.
I got mentally prepared and now the schedule is all different. Ugh!
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BLMike
Glad to hear Polly made it through ok. I planned on taking my cold items in an insulated bag. I even got alternate old time ice bags the ones with the screw on cap. I hoped the nurse would fill them when the others are not longer cold. I thought the cold packs where needed for a specific period while one drug was being infused, not for the entire time. Does anyone know?
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STJA16 -- Polly's Abraxane treatment is 30 minutes. They (her MO and the nurses) recommended icing the feet and hands for 15 minutes before, during the 30 minute Abraxane treatment, and for 15 minutes after. So for Polly's treatment it's an hour total of icing. We brought her Therapy mittens and socks in an insulated bag with the sealed ice blocks that come with perishable things that are mailed to you. I had them surrounded by a total of 6 ice blocks. I just bought a second set of mittens so she can trade them out after 30 minutes.
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Hi all,
I have my education scheduled for Monday, Infusion port installed on Tuesday then start the first of 4 TC sessions (every 3 weeks) on Wednesday. I’m also going to do the cold capping using the penguin system which should be here on Monday so we can do some practice rounds next week as well.
I can’t say I’m all that excited to start the process but I keep hoping the 4 doses will be easy enough to psych myself up in the process (one and done, halfway there, the end is in site, etc).
Since my education will be at a different location than the infusion center is there anything I should ask for so I’m not surprised or encounter a “I wish I would have realized to bring that” moment? I’m trying to get a walk through of that location before treatment - at this point I feel like I’m just going through the motions and heading where they tell me.
Prayers! 🙏🏼❤️
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STJA16, I am on docetaxel (taxotere). For cold capping, they had me put it on 30 minutes prior to the drip, so I used the ice mittens and socks at the same time. I kept them on 30 minutes after, and rotated between two sets.
BLMike, good to hear it was a lot easier on Polly than she expected. A lady in my support group has been on zometa and has no complaints. She's pretty cool and still does things like zip lining and kayaking!
Jenshealth26, maybe ask if they provide warm blankets at the infusion location. That'll be one less bulky item to carry. I've heard some centers provide lunch. Mine does not, but you may want to know if they will. Slip on shoes or actual slippers would be nice too, in case you want to quickly rest your feet without shoes on.
TX, sorry to hear it was delayed, but hopefully they can get your bloodwork fixed. I've been stressing about my numbers and I'm going to make a bunch of bone broth this weekend. I hope it helps keep the numbers where they like to see them.
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TXlorelei
So sorry to hear about the weird blood test result. Is there something they can give you to help resolve it? This probably did not help the anxiety level.
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BLmike,
Good idea on those second mitts. Are you able to be there with her? My Oncologist won't allow guests in so I have attended all appointments alone and will do chemo alone. Bummer.
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Question to all,
With the feet and hands cold packs, did you take extra socks or gloves to wear? One of mine says to wrap your hands in a cloth or rag to protect the skin. My nails literally turn blue when i get too cold so i want to protect them but not minimize the effect of the cold packs.
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STJA16 -- No, due to COVID, I'm not able to be with her. It is a bummer. She's not able to lift the insulated bag with have with your therapy mittens and socks so I have to bring those into the office, and then a receptionist takes it back to the chemo area for her. We repeated the process at the end of the session.
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BLMike,
I will have my husband take my bag and leave at desk. Good idea.
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STJA16 -- Polly wants to be independent so I also just bought a small, lightweight luggage cart so she can (hopefully) wheel in the insulated bag directly to and from the chemo area herself. The one I bought was $42.99 on Amazon and will arrive tomorrow. Of course, putting the husband to work is always a good idea too!!
https://www.amazon.com/gp/product/B07L963H4N/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1
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For some reason, I'm getting a false positive on the test for pregnancy hormones. Not only am I post-menopausal, there hasn't been anything physical “going on". The gynecologist wants to do a pelvic MRI; I'm hoping it's just a fibroid or something.
Husband said that when they told us, the doctors looked like they expected some sort of “Jerry Springer Show" style explosion. I just wondered how I missed the heavenly visitation.
Edited to add:
Re-sequenced results just showed up on my portal. Using a number scale, I'm at the upper end of normal for post-menopause. This overlaps the bottom of the positive range.
I'm feeling more confident that this is just an error. Hopefully after another blood test, I can move on.
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TXLorelei -- I hope the blood test results get sorted out soon. Oh my. The stress of prepping for chemo is hard enough without a detour like the one you're going through!
STJA16 -- I'm doing TC and they iced my hands and feet during the taxotere (1 hour). I opted to try out what they had there for icing rather than bringing something with me (I live about a half-hour away and was concerned about things thawing during the trip and the pre-infusion cooling for the cold cap). They put ice packs in soft pillowcases and wrapped them around my feet and hands. I felt plenty cold during that "deep freeze" hour (I could barely keep my hands in there by the end). They removed those for the cytoxan.
I'm 4 days out from TC 1 of 4, and I'm doing okay so far. I feel a bit "off" and have been heading to bed early every night. Given the wide range of ways that chemo side effects can show up in our bodies, I'm finding it a bit stressful to wonder what the coming days and weeks will bring for me.0 -
BLMike
Thanks for the link to the cart. This one is insulated with wheels.
https://www.amazon.com/dp/B006HFB7UY/ref=cm_sw_r_cp_apa_glt_fabc_PT03F2VAW09DGW3XR32W
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Just an update (which may be too much information, but what the heck): Polly is 48 hours after her first chemo treatment. For some reason (unrelated to chemo I suspect), she had a terrible night pain-wise on Friday night/Saturday morning (probably her worse night yet). Fortunately, that pain in her liver and abdomen subsided, and although she was tired on Saturday, there were no real obvious chemo side effects. She's noticeably more fatigued today. She has been able to eat small amounts several times a day: oatmeal, scrambled eggs, peanut butter and jelly sandwiches, chicken noodle soup, peanut butter crackers, watermelon/cantaloupe: comfort foot stuff. So far so good I guess but we're just waiting for the side-effect-guillotine to drop. Best of luck to everyone else.
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BLMike
Sorry to hear she is in pain. I join the Tuesday Chemo zoom calls. On one call they mentioned using Biofreeze for the bone pain. They preferred the roll on, cream or gell not the spray. Also the oncologist said to take claritin allergy. Try to join next Tuesday. Discussions are helpful.
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STJA16 -- Thanks for the suggestion to attend the Chemo Zoom call. I did today and it was very helpful with a couple of very good suggestions (e.g., using the cold slippers on your hands, drinking ginger tea, and taking anti-nausea meds at the very first sign of nausea).
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I hope everyone's having a good week so far and managing well. I'm now one week out from TC #1. The last two days were pretty rough, especially due to a really intense persistent headache, along with tinnitus. I also had some fatigue and not a great appetite, and I developed some painful mouth sores and a few other side effects. I contacted my My MO's office about the headache, and they had me come in yesterday to get checked out. (I was sorry to have to miss the weekly call as a result.) It was great to talk with the NP about my medley of side effects. She had me take a combo of compazine and toradol to control the pain and to help me sleep (which I hadn't gotten much of the night before). That “cold reboot" did the trick. I feel ten times better today and nearly back to normal. She also gave me a prescription mouth rinse which has been really helpful for getting the sores under control.
So the upshot is that side effects do go away or ease up, and it's worth reaching out to your treatment team for help or questions.
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AnnSOptera, sorry to hear it was pretty rough the first week. I'm two weeks out tomorrow, and I have been feeling about 90 percent myself since two days ago. A few days after the first infusion, my tongue started feeling fuzzy and I couldn't really taste anything. Oddly the only strong flavors that I could taste was chocolate and garlic. I think I'm starting to get my taste buds back slowly, but just in time for #2!
Hopefully, you'll start feeling like yourself soon too. I was really doubting whether I could do another session, but after learning how to manage these side effects and knowing that we can bounce back with at least a few days feeling somewhat normal makes me feel more in control and not as hesitant.
Did you get the neulasta shot or similar after? I thought I was out of the woods after day five, but day 6 and 7 I felt lower back pains, similar to how it felt after I gave birth to my kids. The good thing is I was familiar with the feeling, so I knew I could tough it out.
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Hello all
I’m checking in on my husband’s behalf - he had his first dose of docetaxel and cyclophosphamide last Thursday and is just getting beat up since Sunday - joint and bone pain, headache, and then the nausea and heartburn hit him today. I expected a few days of roughness - anyone on a similar regimen have any insight into when things might settle for him?
We added Claritin for bone pain and that seems to be helping. Also Tylenol, gravol and a few Tylenol #3.
Very hard to watch 😥
I’ll cross-post this to a few other threads as well
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AlwaysMEC - Thanks so much for the support and encouragement. I only had a rough couple of days, and I'm feeling so much better now. I'm glad to hear you're doing well 2 weeks out. I know what you mean about just learning to manage the side effects and to remember that they are temporary. That's wild about the chocolate and garlic flavors being all you could taste! For me, everything tastes kind of salty, if it tastes like anything at all. Very strange.
MSWife - Your husband and I are on the same regimen (TC) and nearly the same schedule, as I had my first infusion the day before his. As I mentioned in my earlier posts, I was fine for the first few days, then the fatigue and headache started on days 4 & 5, with days 6 &7 being the hardest. I felt significantly better starting Day 8 and this continues today (Day 9). I had a Neulasta shot (Onpro injection) a week ago, and I haven't experienced any bone pain. I started Claritin the day before the TC infusion (2 days before the Onpro injection) and I've continued it until today, which is a week after the injection. Like your husband, I had a headache, which was the worst part for me. I used Advil and Tylenol, and then my MO's office prescribed Toradol (they offered Vicadin but I wanted to steer clear of that if possible), which helped. I also had some mild nausea and heartburn. Those side effects have all largely cleared up for me, and I feel pretty close to myself now. I know it was very tough for my spouse to see me struggle through those hard days, and I'm sure he felt pretty helpless. But I can tell you that there really is so much you can do to be helpful, even if it's getting a few crackers or some water, or turning on stupid TV shows for a distraction. I hope your husband is feeling much better soon! Sending positive thoughts your way.
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Welcome MSWife. Regarding the heartburn, I have a history of GERD when my body is stressed, so I did get it pretty bad the third and fourth day. My throat felt sore and tight. My MO gave the okay for OTC omeprazole (Prilosec) and I took it for two days to help heal my esophagus. I ended up taking Tylenol for a day for the bone pain, even though I take Claritin daily for seasonal allergies. Thankfully, that part only lasted a couple of days. I hope your husband feels better quickly.
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Hello everyone, its been a rough few days for me. I had chemo C1D1 on Wednesday. I started the steroid on Tuesday and they did all the pre meds for about an hour on Wednesday. They started the Taxotere and I began putting on my cold socks. I got one on and felt funny fast. I alerted a nearby nurse to get my nurse and that's all i remember. I passed out. When i became alert i had 2 doctors, 3 nurses, administrators, there was a lot of action, oxygen, pushing meds in my port, blood pressure monitoring, i could not move my limbs etc. I could hear and see them but not responding much. I was onTaxotere for about 4 mins, passed out for 1 min then they revived me quickly. Had to be transported to the ER. Husband and kids were in full panic mode when center called my husband. But i was able to call him within a few minutes so they could hear my voice.
Hospital did all kinds of tests for 6 hours. I did not have an allergic reaction which would be more antifilactic, throat closing, no seizure but i did experience a severe reaction to drug. Followed up with Oncologist yesterday and she confirmed severe reaction. She presented options and believe it or not the best option is to try again with more control and more pre meds allowing them to absorb for a longer time before Taxotere. Then do a very slow release for 20 minutes to test with everyone standing by with any reaction and reversal drugs ready, full vital monitoring etc. Then after those 20 mins decide how to speed up or slow down to administer the rest. Then i still have Cytoxan that day as well. They said expect to be there all day long as it will be a very slow infusion. I am concerned about how i may feel or respond overnight but will have a follow up the next day as well for the Neulasta shot and fluids. The other option was a 24 weeks of chemo which would include a sister drug and increase my number of infusions from 4 to 16.
My blood pressure is still high but not as high as during the event. Have to monitor over the weekend. They said the steriods may be continuing and they should be wearing off over the weekend. But they want to try again on Tuesday so i start steroids again on Monday.
I am beyond scared. They were so quick to respond and knew what to do so that felt good but still concerned. My body is tired, my brain is tired. My husband is in tears. Not sure how to prepare for something like this. I was prepared for symptoms but not this severe reaction.
Today i am resting, getting some fresh coconut water to lower my blood pressure, bananas anything i can think of to help. I am keeping a log. They asked for my primary care to check my BP on Monday so have that set up.
MSWife, hope your husband is better soon. Hang in there. Your support is meaningful.
AnnSOptera, hang in there. Sounds like you have a lot of symptoms to manage but your team seems very responsive.
BLmike, glad the call was helpful. I have found them very informative and comforting. I was not able to join this week and next week will be back trying C1D1 but hope to join the following week.
Thanks for listening.
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STJA16 -- I am so sorry to hear this about your first treatment. That all sounds incredibly scary, and I'm sure it's left you and your family shaken. I'm glad that you were being so closely monitored that everyone sprung into action right away and that you're okay now. I'm sure it's daunting to think about trying Taxatore again, but it sounds like your oncologist has given a lot of thought about a modified and cautious approach. I hope you give yourself plenty of time to rest and recover over the next few days. I hope the BP improves, and that your anxiety can ease a bit too. Please do all you can to take good care of your body and mind, and that you ask for help. I'll be thinking of you and hoping for the best in the coming days.
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Oh STJA16! That does sound scary. Chemo is stressful enough without having to worry about a severe reaction and that definitely sound severe. Jeez. Best of luck next week with the slow infusion. That will be time consuming, but hopefully effective and won't solicit such a reaction. We'll be thinking of you and wishing you the best.
Polly goes for chemo treatment #2 in about an hour. We're hoping her SEs will be no worse than last week.
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