Starting Chemo September 2015; join us!
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As a project engineer I redesign industrial machinery and have to make and install components for trial. Also any projects proven out have to be scheduled for upgrades and then I install them mirror the successful trials. So some days are physically intense and others are desk jockey days. I also walk several miles for monitoring of machinery. I am too slow and tired to be effective and I can admit that to myself. I know stopping now won't fix anything so I am finishing up today with the AC, not sure if I'll continue with Taxol and rads though. I want to discuss with my MO today what the difference in percentage will be if I choose to be done after this. I know the AC is the big guns so I feel pretty good about being done with that anyway.
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edwsmom - Keep us updated. I hope you are recovering.
Two notes from my physician's assistant:
1) (Sorry - this one is a repeat in case edwsmom didn't catch it): an epic runny nose is caused by losing your nose hairs. So if you're counting that as a headcold symptom, it may or may not be one
2) Fever is on my "Call the on-call oncologist 24/7" list of symptoms, so (for whatever reason) there's no fooling around with it. (I hope it didn't spike by the way!)
For all just for the record: I have zero dietary restraints. They seem much more focused on patients eating something / anything than "what not to eat." I get weighed every two weeks, so they're on the look-out for unacceptable weight loss. I've been able to indulge in a little coffee and wine when my throat is not totally aggravated. Baking soda rinse and gargle helps both mouth and throat.
HELP! Does anyone have any gaming strategies for when to take steroids to minimize sleep loss? Took one dose at noon yesterday (had been taking it at noon and it seemed to help). But today is a two-dose day. Rx doesn't dictate timing, but obviously they wouldn't want you to take two doses too close. Thinking of 6 a.m. and 3 p.m. - any advise? Anyone else's MO give you timing advice for a two-dose day? Thanks - the steroids made me near-sleepless for two nights running last cycle.
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tessu that's about the list I got. Add unpasteurized juices, no lunch meat or prepared food from the deli and no pepper on your food unless you cook the pepper with the food. That one was odd so I did some research. Peppercorns are absolutely covered in fungus and staph and strep spores. GROSS!
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Minnesota: the only thing that works for me with the steroids is a pinch of marijuana (and I mean a TINY pinch, about the tenth of the size of the pinkie nail, and I have small hands. MJ is much stronger than when I was a kid) chewed and then dissolved under my tongue before bed. Otherwise, no sleep for me. I am supposed to take my dosage two times per day and with food. I've tried varying the times and it doesn't work. Tried to do without the mj night before last, didn't work. Actually got five or so hours of sleep last night. No matter what I do I will be up at 4 until after they are done and I can crash. I must say that it helps with the nausea as well...which I am noticing more this round. Of course, you have to have access. Access is easy in California whether you go the legal (quasi legal) route or not....
My doc also gave me no food restrictions. "Live as normal of a life as you can". Maybe he doesn't know how much I like raw fish and even very rare meat. :-) However, I am avoiding raw fish and rare meat for the duration, but eating whatever else looks good. As was mentioned, the main concern they have is that I eat something and thus far my appetite has been fine, even on days when nothing tastes good and everything tastes either like nothing at all (currently the case) or really bad. Right now I am finding starches and dairy to be appealing. End of last round it was beef,beef and more beef. Go figure.
I have had a consistently on and off low grade fever, and am instructed to call or come in if it ever gets above 100.5, but it hasn't yet. My WBC are very good, and they haven't been able to identify any infections associated with the fever. I think I mentioned here that I was told 'no flu shot' but no restrictions on crowds unless the fever strikes. Maybe because my WBC have stayed so good?
My heart burn is much less this am than yesterday, so that's a good thing! I hope all have a great day.
Good Jays game. I am officially a Jays fan totally for as long as it takes; since the Cubbies aren't around as a distraction any more. Really hope they can tie it up tomorrow!
HUGS to all!
Octogirl
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Octogirl..sorry about the Cubs. I didn't get to watch much as the games started after the Jays/KC game and that was my travel time home. Yes, the Jays came through yesterday with an awesome performance. I'm so happy they didn't let KC win it in their house. Win or lose, they have heart and never gave up. Just like all of us.
Infusion #4 this morning. My last AC...yay, I'm halfway done!
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Octogirl - Thank you so much for sharing your experiences. Although MJ is technically legal for medicinal purposes in MN now, it is notoriously difficult to get an Rx for it. (As in, you have to be having twenty seizures a day.) Plus, the closest dispensary is many hours' drive from me. : (
Like you, I must say the steroids eliminated almost all nausea round 2 and have completely eliminated it 3rd round. So I'll quit trying to game the 'roid timing and put up with being "Sleepless in Central MN" for a few days in return for a healthy appetite. Which is *PRICELESS*
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It's baffling how different all of the MOs are. I specifically asked about sushi, soft cheese, fresh fruit/veggies, etc., and was told zero restrictions. Just to make sure that the fruit and veggies were washed. BTW: peeling fruit and vegetables only works if you wash it well first. Otherwise, the knife spreads the germs from the peel into the fruit. I've been eating loads of local yogurt and our neighbors' honey, which I routinely did before chemo. My biggest stumbling block right now is figuring out how to wash my hands with this compression wrapping on my left arm/hand.
Minnesota, my MO told me that I could reduce my steroid dose if nausea wasn't a huge problem. I'm going to try that starting today (I had chemo Tuesday). 4:30am is not my friend. Most of my nausea has been of the "am I nauseated or hungry" variety, so it's worth a shot for me. I'm going from 4mg/twice a day to 2mg/twice a day.
Tessu, my MO does blood work before chemo. Because they do it right in the office, it doesn't extend my time there all that much. They don't even order the drugs until the blood work comes back OK.
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Scotland - Oooh, I like that advice. My Rx is identical and, if I continue to have zero nausea today, I'll go for one dose vs two doses tomorrow. Thank you!
(In other gross-bodily-functions news, no dreaded chemo constipation during Round 3! Daily psyllium pre- and during-chemo plus lots of high-fiber foods did the trick.)
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Minnesota, I skipped the last evening dose last time, and confessed to the MO. Her opinion was that if itworked, I could probably cut back on the steroids. One of the reasons that I can't go back to sleep when I wake up at o'dark thirty is that I'm starved. Cutting back on the steroids helps with that, too.
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FWIW, I was thinking of reducing the steroids after round one, but after talking with a few women on the August chemo thread (Suzanne50 I believe in particular) who tried that and regretted it (nausea much stronger), and with MO (who gave me one of his gentle looks and said, 'You are doing so well overall. You need the steroids.') I decided not to do so. I decided that I'd rather have some less sleep than the misery of nausea.
MO had also prescribed Ativan 'as needed for nausea' and i decided to try that one night to help me sleep since it is an anxiety reducer (and anxiety may be adding to the sleeplessness for me, i think). Hated it. More psycho-reactive for me than the pot. Tried it just the once, back to the regular steroid dose and a pinch of mj before bed.
My steroid dose is 4 mg twice a day for three days post chemo, plus a dosage they give me in the IV before chemo
Best
Octogirl
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Scotland-if you are waking up starving at night, try having a high protein snack before bed. A protein shake with some banana, peanut butter on a rice cake, Greek yogurt in a smoothie. It will help to tie you over longer. It is worth a shot.
I have it cut back on my steroids at all. They have helped me so much in terms of SE I am not taking any chances. I just take an Ativan before bed and that seems to work..0 -
congrats LindyC. Nice to be done with that part. For those of us doing DD taxol I started a post asking for advice for DD taxol. I saw a topic for weekly taxol but none for us DD gals. I am getting worried about starting next week.
I was pretty knocked out earlier this week with horrible gi upset, nausea, and major exhaustion. Couldn't get up off the couch. I had been taking protonix prescribed by my mo for acid reflux. Seems that was causing me more SE than the chemo itself. I stopped the protonix 2 days ago & feel much better. Still tired but have more energy. This chemo crap is definitely cumulative for fatigue.
Happy Thursday to all. Hope to enjoy the warm fall temps here on the east coast. Hard to believe Halloween is almost here.
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Courage, humor, and grace. Yes, I think this applies to our journey here. Hugs and positive thoughts to all of you beautiful girls.
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The lack of sleep is a bigger problem for me than nausea, so I'm on day one of half steroids. So far, so good. I'm hopeful, but traveling with my "as needed" anti-nausea meds and barf bags.
DeeRatz, I've been doing protein before bed. It's like being pregnant when the steroids are in my system. I could eat a porterhouse at midnight and still not make it until my alarm goes off.
Octogirl, I took a single Ativan the night before my mastectomy for anxiety. Although it did its job (I slept that night and held it together before surgery the next morning), I hated the emotionless zombie it made me. It's a tool in my toolbox that I'd rather not use, but good to know it's there if I need it.
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Good Morning!
Yesterday was another great adventure in Chemotherapy. Popped my "visit to the ER" cherry!
Except we have assorted Prompt Care/Urgent Care units around here that are much nicer & the waiting room was empty.
That phantom back/kidney pain I mentioned in my last long post... turned into running to the bathroom every 20 minutes to take a burning pee. Yay for UTIs! Called my chemo nurse to see if I should just drink cranberry juice or something... NOPE! Ah well, they were very responsive and within the hour I was waiting at Safeway for my antibiotics. 1 dose later, woke up feeling great. Amazing stuff. Why isn't it over-the-counter?
Also, apparently they recommend being on Prilosec twice a day, every day for the entire duration of Chemotherapy. (It's in your guide book & notes!) And I couldn't remember her telling me that. Mom couldn't either (my escort). Interesting. Fortunately I had already grabbed exactly that at the Grocery store before she called.
Oncologist wants to have an in-person chat on Friday. Why do I feel like I'm being sent to the principal's office?
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I ended up in the ER last night. Got there at 8pm, got home at 4 am. It was so frustrating.
My fever was 101. It took me 4 hours to be seen. They took a ton of blood, gave me some tylenol to bring down the fever. I waited 2 hours for a chest xray. Turns out my white cell count was nice and hight from the Neulasta shot. Chest xray was clear. They sent me home with antibiotics.
After all that, it makes me want to just take some tylenol next time and go in to see the doctor the next morning...
BTW - I called my MO's office last week because I realized that I was taking my steroid incorrectly. The dosage is 2 pills, twice per day for 3 days. I was taking ONE pill, twice per day for 3 days. The doctor said that it's mainly to prevent swelling and that since I haven't had any swelling it was fine. I also have had very little nausea. I was wondering why I wasn't having any sleep issues from the steroid, well it was because I was taking half as much...lol. I'm going to keep taking it the same way next time.
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edwsmom, DLcygnet, & Annie feel better.
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I am on TCH so my situation might be different. I take the steroid at 4am and 4pm so that It is out of my system by bedtime. It is a pain to set an alarm and wake up at 4am long enough to take my pill but I do sleep better at night.
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KatieJones5 - Your post was perfect for me today. After three different chemo round SE, I've finally (duh) realized I can't predict (much less control!) anything about this experience - except my attitude. Thank you.
Grateful for the updates, edwsmom, DLcygnet, & Annie - glad you are soldiering on. (((hugs x 3)))
Interesting to hear more perspectives on steroids. After third round A/C this past Tuesday, zero nausea Wed or today. So I'm going to experiment with half dose tomorrow. Today is still my "total exhaustion" day; 3.5 hour mid-day nap felt sooo good.
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*hugs Edwsmom* I desperately didn't want to go to the ER... everything takes forever even if you arrive on a stretcher. Sorry you had to do that.
Steroids - I'm on 1 pill 2x per day for 3 days and thinking about asking to cut back. I got a withdrawal headache this last round. I shot up 5 lbs every infusion too. Great for the nausea & keeping the fatigue at bay, but wow.
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Edsmom what a crap experience glad your chest was clear and your home. When I started treatment I was issued with a card which if necessary to go to ER we show them and they put us straight through no waiting. It makes sense why would they want you to sit in a waiting room full of sick people. Our health system is not perfect but pretty good I think as the years go on it will iunfortunately became about money and care will drop.
Third round and of Fec chemo last night switching to Tax next round cannot believe the increase in the amount of steriods feeling nervous.
Take care girls.
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Hello Beautiful Ladies!!!
Has anyone started Taxol yet? This Tue is my last AC and I was curious to know of the SE of Taxol, although my surgeon said they arent as bad as AC.
Thank you for posting all SE and BC shenanigans, we are in this together and it helps.
Im bald now and I almost feel relieved of having to find my hair everywhere or seeing my man sweep the floors all the time. I haven't been out in public with my new look ,im just dreading the ''look" that i ll get from people but im prepared with a wig, beanies and scarfs.
Has anyone experienced purple spots on tongue ,nails and brown spots on palms? MO said its normal!
Hope everyone is resting,gaining strength and remember this shall pass.... hugs
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They changed up my IV nausea meds because I got a migraine for days from thr Aloxi. To manage nausea they gave me steroids for after chemo. They count chemo day as 0 and told me to take (2) 4mg tabs in the morning for four days starting on day 2. I only took them a couple days before stopping them. I wasn't feeling nausea so I took a chance. They also wanted me to the compazine scheduled to prevent nausea. I didn't want to until I knew whether I actually had nausea. It says it can cause drowsiness and I don't need that with trying to keep up with my toddler.
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(((hugs))) to Annie, Edwsmom, & DLcygnet.
Hope everyone has restful night. AC is officially in the books. Woot! I have a plan for dealing with the work situation, hopefully they're receptive to what I have in mind.
Shopgal - thanks for starting the Taxol topic. I am scheduled for dose dense every 2 weeks so any info on that is awesome.
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Hey staykarlastrong, I just finished my 6th round of Taxol, only side effect for me has been hair loss and tired. Still working everyday, running and biking. If there is anything I can say to all you beautiful ladies it's stay positive and you will stay strong
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Cinque...they literally handed me a paper face mask thing....
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Last AC this morning. #4 is in and done. I have to say its the worst one yet. Totally different from the last 3 infusions. With the others, the first day or two I had fatigue but that was about it. Today, I came home and basically fell into bed. Nausea, fatigue and massive migraine type headache. So, this will be interesting on how it develops over the weekend.
Dose dense Taxol is scheduled to start in 2 weeks. Looking forward to the break on my stomach. Ugh...munching on saltines.
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I am in the September group, but my first chemo was 9/28. I'm supposed to be dose dense, but my second was delayed to 10/19. So I noticed a couple other dose dense ladies, but you are ahead of me, you can tell me how the taxol goes. If I stay on schedule, it will be AC#3 on 11/2, AC#4 on 11/16, taxol on 11/30
I enjoy hearing from all of you, sending prayers and best wishes.
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Does anyone else get random throbbing in their lower back? I got it last time and it has started again. It stops me in my tracks but only lasts 5 seconds maybe. So weird. I blame Neulasta.
How many days after Neulasta are you ladies taking claritin?
I go tomorrow to get labs one week after 2nd infusion. I wasn't worried about the numbers last time. Today I felt worse than I have in days. My tongue is rough feeling. Is that what happens before taste buds go? I feel like I am coming down with something but can't tell if it is chemo or not. It looks like I still have nose hairs but my nose has been running off and on all day. My husband has to understand how unsexy I feel right now.
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Edsmom come to Australia we were in the States a couple of years ago and I loved every minute cant wait to come back. Hearing about the waiting you girls have to do and insurance companies having to approve tests etc we just dont have that. Take care lovely lady this will all be behind us soon.
I had chemotherapy yesterday and a good round of retail therapy today and no Australian health system doesnt cover Retail therapy.
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