Starting Chemotherapy March 2018
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Hi All,
The chemo teach nurse suggested Zofran, but the pharmacy blocked it after checking my history. My heart tested well for MUGA scan and past ecco and stress tests, but I've had arbitrarily palpitations in the past. I've discovered it's food related, but the Western med folks don't believe me. whatevs, I know this body I live in! I Took myself to the ER one day afte Ben and Jerrys Fro yo- it's full of Carrigeenan, which makes my palps start. Also emulsifiers like guar gum, letchin, etc all get me going, as does butter fat. So Zofran should be evaluated on an individual basis. I have carboplatin instead.
Just finished chemo #3, now down to single digit #9!. (Well, pluse the rest of the year every 3 weeks, but Herceptin is different). Onco nurse said to take Metamucil daily to balance out the diarrhea and constipation. What a wild ride. Hoping this weekend will be better than last, but we do what we gotta do to kill those cancer cells.
I see my blood work numbers dropping. Anyone have a good resource to help understand them? I want to be informed but not freak out.
Hey yogurt eaters, I read that yogurt with live cultures should be avoided if you are in low neutropenia levels.
Stay well and strong Warrior Women
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downdoggie
https://www.stlukes-stl.com/health-content/health-ency-multimedia/1/003642.htm
Check this. I am told the important numbers for chemo patients are WBC, platelets and neutrophils. If you get an copy of the result, it should also mark the standard range. The abnormal item normally marked with “A” from the results I done in my city.
Neutrophils and platelets lows reflect our compried immunity , need attention from MO to decide next step to avoid neutropenia which is no joke.
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Well ladies, i had my first injection today of Filgrastim, some of you have the Nulasta. About 30 minutes after shot I felt really flushed, then heart palpitations and short of breath. Scared the crap out of me. I went and laid down and it stopped after about thirty minutes. I hope i don’t do this on the next four shots. I have a call in to doc to ask about it. I have been taking medicine for heart palpitations since before all this. It could be all this different medicines is just making it worse. Who knows, but I sure don’t like it.
Becky glad you seem to be doing good. Like you I don’t want to get my hopes up. Lol
Wildcolonia- thanks for the info. They told me the zofran was for nausea. And it must be working. Happy you are doing well and hope your rash gets better soon.
Till to
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for those worried about zofran - the main danger would be if you have long QT syndrome. There are antidepressants and other medications such as some antibiotics that can have this effect, but if you do not have this history, aren't taking one of these meds, and you had a normal ECG, I would not worry. Take the zofran. It works. If you have palpitations, it is more likely from the steroids. I am a dedicated 2 shots of espresso a day girl, and had to give that up. Watch your caffeine on steroid days. I was also told if you are on a taxane (taxotere or taxol) there is a higher chance of allergic reaction due to the solvents they have to use to make it.
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quiltingnut
Sorry to hear about your reaction to Filgrastim. What did the doc say? I had grastofil which is Filgrastim, muscle and bone pains kicked in 12 hours after the injection. So keep an eye out for that. I do injection at noon and took Tylenol before bed, no Tylenol next day then do the same next shot. Nothing else.
Watch out for abdomen pain. I am told to call Doc when that happens. One side effect of these shots is spleen enlargement worst case burst for Nulasta. So I palpate myself every so often at upper abdomen for tenderness. I have some minor random an pains pop up, Doc said could be inflammatory intestines. I also read it could cause inflammation of blood vessel.
I am told to report any new symptoms we have to Doc.
Hope it gets better for you.
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This is day three for me. I actually don’t feel too terrible. I have a headache and a little tired. I hope i don’t crash tomorrow. I’m waiting for the doctor to call me back about the reaction I had to the shot yesterday. The nurse said don’t take it today till she gets with the doctor. Hope everyone else is doing as well as possible.
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I feel achy and sick and tired and just all around... eh.
My Scalp is tender... My skin aches... Slight headache... Sore neck and lymph nodes...
My leg bones are starting to ache..
Basically everything is achy. Even my Jaws.
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Hey Quiltingnut and Bec-Ky I’m on the same treatment schedule as y’all.
Today is day 3 after my first round of chemo. I think I expected to feel worse then I do. I was able to work yesterday. Today I’m like you Bec-Ky tired, achy, and I feel heavy. Just doing laundry and dishes winded me.
Thanks ladies for posting how you feel. I like to log on and compare symptoms or side effects.
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Day 5 of first TC tx here. Days 3-4 were rough as far as the fatigue and achiness (felt almost identical to having the flu but without a fever), I also felt like I was walking around in a fog most of the time. ut today I'm feeling somewhat human again.. was able to go out and do errands etc. Taste buds are still shot and still a little bit tired but that's it. I had pain/aching in my legs and hips all day yesterday and into last night. I'm assuming that was from the Neulasta shot but today it's almost gone. One thing I wasn't expecting that keeps happening is I am sweating buckets at night when I'm asleep.. especially the past two nights. Last night it was the worst. Still trying to stay very hydrated as I feel that's helping me a ton. Hang in there ladies!! xo
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Steph - I think many of us are experiencing the night sweats. I believe it's chemo induced menopause hot flashes & just generally 'running hot'. I find for the first time I'm not the coldest person in the house. I used to always crank up the thermostat and have fuzzy blankies and socks and now I'm the one opening windows lol
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The doctor called back and wants me to try the shot again. I’m scared to death. She wants me to take a Benadryl 30 minutes before. If i still have reaction then i take another Benadryl and steroid pill. Why me. I know i need to be able to take these shots to protect myself from infection. I’ll report back later this evening. I plan on doing the shot around three
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Hope all goes well, Quiltingnut. You're so brave to give yourself a shot!
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lol no I’m not! My daughter does it for me. I couldn’t do it.
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Hi, ladies
Any of you ladies had/have Grastofil as your filgrastim Shot? We get them in Vancouver, but Doc doesn’t mention anything about Benadryl. Just tylenol.
I tried Benadryl last time but took only day after the shot and didnt do much. Just wondering I should give another shot, due for the Grastofil shot tomorrow.
Bec-ky
I found warmth help. So I snuggle with hot water bags when ache starts. But keep it away from my injection sites or incision sites.
quiltungnut
These shots are kind of important, keep our neutrophils levels and immunity not too low. I had bad pains as well, but normally Starts 12 hours after the injection, I took one regular Tylenol, which will last me to the next shot. On days it is not too bad, I use Chinese joint pain patches and Moxa treatment.
Good thing is we don’t do these forever, 5 shots is what I do. Once it is done, all is better.
But dokeep the nurse hotline number handy.
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NVDobie - I had grastofil x7 for my first round. I used Claritin (as recommended on these boards). It really didn't help much that I could tell. FWIW, I also found Tylenol wasn't as effective as Advil for dealing with the joint pain but doctors seem to vary about allowing its use so check if Advil is ok for you. I hated the joint pain & ended up having tons of secondary muscle pain. My whole back was stiff and sore.
Just remember to take your temperature before taking Tylenol and Advil.
I think Benadryl is overkill unless you're having full blown allergy symptoms. But I try to avoid Benadryl as it makes me super drowsy....
(last round I was switched to Neulasta and that really gave me no pain at all...)0 -
Day 3 for me too. Getting ready for my shot. Back ache, but Tylenol and heat helps. Good going girls, we can do this! My sweet niece just sent me a gift of an on-line subscription to the NYT, she is a librarian (as was I before I retired a few years back)
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I’m only having to do the Benadryl before the shot today because I had a reaction to it yesterday. I don’t like taking it either. It is not for the bone and muscle pain. If I have reaction again she doesn’t want me to do it again. Guess I’ll see how it goes soon. My daughter will be here in a bit
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moth
Thanks. Good reminder on temp check. Advil give me tummy issue. :-( SE risk wise, Advil could damage the stomach lining or digestive track whenTylenol has risk on damaging liver. Well, choose our poison. I generally avoids painkillers unless it is unmanageable. The fellow MO I saw thought I was strange asI am waiting for the pain to start instead of taking them in advance. Well.
Keep an eye out on upper abdomen tenderness near spleen if not already for Neulasta. I am doing the same for Grastofil
Jstarling
Rooting for you. Let’s kick these pain’s butt!
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Nvdovie - funny you say that.... I just woke up from a nap with my heating blanket on full blast hot as possible! That helped a lot.
Steph74-that gives me some hope... I hope by day 5 I'm starting to feel better. I guess all I hope is for it to not get worse than this. I feel like I'm complaining so much.
Quiltingnut-how did it go?
Hope everyone is doing OK.... This sure is an eye opener.
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Hi, Just wanted to update my experience. Day 5 today, I'm on AC regimen. I actually feel pretty much normal again, even taste is returning, seems to be almost normal with food---however water still tastes off. Last 2 days were pretty rough with the bone/muscle pain from the neulasta, fortunately it only came on in early afternoon, so I was able to go on walk, get stuff done in the ams. I have to say the pain was pretty bad, especially the first night seemed like anywhere I had a large bone was super tender and achy, even my chest (which would have scared me normally, but realize a lot of our immunity stems from there). I took claritin each day as suggested, not sure if it helped although I took it at night and then each morning I felt better. I did resort to some narcotic pain reliever when resting which helped a lot. Seemed like during the day when I was moving pain was not so bad, soon as I stopped and was resting it was bad. I think I said at least 3x now, it was bad! Hopefully it won't return tonight. Stopped taking steroids yesterday and wondering about steroid crash, but I feel fine. Otherwise my biggest complaint now is constipation, stopped taking all nausea meds on Wed and have been taking colace and miralax, adding more fiber to my diet again (ate way too much sourdough toast during the nausea/bad taste phase), but no luck so far. Feel fortunate about SE's experienced in general, not as bad as I expected overall, anxiety and anticipation of it all was worse.
Hope everyone's doing well, one week closer to finishing!
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Hi Ladies,
Day 5 of first TC here also. My main complaint is fatigue at this point. Early on i did have some heartburn but it seems to have subsided. I’m getting some nose bleeds when I blow my nose. Ive been feeling like I’m on the verge of getting sick, but thankfully it ends there. I wonder when that feeling will go away....if this is as bad as it gets...I’ll take it.
The weekend is to recoup and regroup!! Xx
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Wildcolonialgirl,
Thanks for the response I'm happy I found this site and get some tips about what to expect. I will have my 1st chemo on Tues on a IV.
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May07
If you are up for it, exercise helps, even just walks around the block, avoid sun and people though, 60+ SPF and wide rim hats for me always. I tried not to go out between 10-4. But keeping a walking routine has helped me. I also got nose bleed when sneeze, minor and it went away, I do feel dry nose so I wet paper towels with cold water and hold it to my nose for a few mins, keep a large jar of water in my bedroom when I sleep since I also have heater on at night.
Cold/Ice slippers for Toe nails
I couldn’t find anything I liked. So I bought ice gel packs from amazon and brought with me round 2 yesterday.
Nurse has blanket. So I put one on my toes ( folder over half below and half on top of my toes) wrapped in the blanket. I am pleasantly surprised how long it lasted. Good 45 min-60 min where hospital ice gloves really only lasts me 30 min before need to change. I packed 4 sets of ice gels to keep them cool and in case I need more. But end up using just 2 pack over 90 min. session.
Try it.
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NVdobie, thanks for the link on blood work.
I suddenly have a sore throat! This makes me nervous. Normally I would load up on vitamins and Chinese herbs, but can't do that now since I don't know which vitamins are safe and my onco said no herb supplements. SE's are due to kick in tomorrow and Sunday. Hope it's not as yucky as last weekend. At least I had a good week and was able to work.
I'm at Day 15 and wondering if my hair will go in the next few days.
Wishing you all a beautiful spring weekend. It's gorgeous here in California
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I didn’t have a problem with my shot yesterday! Thank the lord! I did take the Benadryl before hand so I really think that helped. I will be glad when i finish the shots though. Three more. They seem to make me feel a lot weaker and just overall bad. My biggest complaint right now is the headache. I’m done with the steroids for this round and going to try to stop the zofran today in case that is causing headache. Also going to have to start on miralax today.
Becky- i agree, it is an eye opener! Hope you are feeling better today.
MLghtn - I’m so sorry your bone pain was so intense. I can relate to the chest pains too as i had the same yesterday. I also can feel fortunate if my SE’s don’t get worse than this. Today is my day 4 though and I’ve heard day 4 and 5 can be rough. Will see.
May07- glad to hear you are doing fairly well. You are a day ahead of me. I will be so glad when we all get to the end of this chemo journey!
Yangsaints- you will find lots of helpful tips here. The anticipation is the worse I believe. Good luck on your first round and I’m sure it will go fine.
NVDobie- I’ve been wondering if I shouldn’t buy something to ice my hands and feet during treatment. They do not have anything like that where I am going.
Downdoggie- hope your sore throat gets better and SE’s easy on you this weekend. I’m not sure about the hair but from what I’ve read it’s surely possible.
Everyone try to have a good weekend
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nvdobie,
I have been asked to participate in an exercise research study. I will either get a treadmill delivered to my home or a fit bit and I will walk 3x a week with an exercise physiologist live in an exercise group on an iPad that will also provide. I have to go for preliminary testing next week (bone density test and stress test) and then I begin. I’m actually really looking forward to it. They also gift me with a small amount of money for being part of the study! The research is to observe how exercise during chemo helps reduce side effects.
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Morning everyone!
Quiltingnut, so glad to hear you didn't have an issue with the shot this time!
Bec-Ky - the "ick" from TC does pass - hang in there. By Day 5 it should be easing up.
Steph74 - sounds like we both follow a similar pattern in SE's and "ick" days. I am 2 rounds in now and it has been very consistent for both.
May07 - great news on the study - do they give you guidelines on how much to walk or let you make that call?
YangSainst good luck! We will be thinking of you. I do my chemo by IV too.
TC ladies - remember that the second half of each round you're feeling pretty much yourself. It does pass - and knowing the routine helps it pass. And sorry for my lack of creativity on how the bad days feel - "ick" just seems to work for me and it's become a code word for my family.
Wishing everyone a beautiful day - it's finally sunny and will be warm here today - so I'm looking forward to a long walk outside.
Hugs!
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Wildcolonialgirl,
Yes, they give guidelines based on the baseline stress test and echo...it’s an individualized exercise program. It’s a walking program only, so they tell me what rate to walk at and for how long and at what incline. They will probably set it based on my max heart rate and target heart rate to get optimal physiological response. I’m a PT myself by profession so I’m very interested in this.
“Ick” is a good explanation, although honestly I was expecting to feel way worse and am still waiting to see if I’m in the clear ......
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Today I feel sooooo much better than yesterday! The pain is just about gone... My skin doesn't "hurt" anymore, and the bone pain is pretty much just my low back and really just feels like a "time of the month" backache.
I have very minimal aches now. Thank God!!!
I sure hope things are now passing and will get better and better and more normal.
Since I began chemo Wed... I think today is day 4?
Anyway... Hope all you ladies have a great weekend! ❤️
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Hi All, so today is actually day 7, miscounted last post, and woke up feeling very low energy, stiff, and having sore throat (or kind of feeling like a lump in my throat that won't go away). Low energy and stiffness I attributed to >24hrs off steroids and that my normal before chemo was stiff and achy often in am, so just a little extra from "steroid crash"? The feeling in my throat prompted me to call doc per instructions they gave me. Luckily it happened to be my MO on call today, he wasn't worried, explained what chemo effects all cells lining mucus membranes of Gl tract and this is kind of par for the course. He recommended gargling with salt water (I had been doing a lot of mouth rinses so no mouth sores but never gargled). He also said to start taking milk of magnesia every 8 hours for my constipation. I feel better after talking to doc but going to spend entire day resting, feel like I may have had some fake energy yesterday which I'm paying for now and don't want to stress my body out anymore. Hopefully most of you are having a better day
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