Starting chemo April 2019
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MountainMia,
For food prep I have been extra careful about cleanliness, which includes washing or scrubbing of certain items. For example, I have some avocados that will be thoroughly cleaned before I cut into them. The skins can have a lot of dirt and bacteria on them.
I'm throwing out more food now too. I hate to do it but if an item has been in the fridge a bit too long (such as cooked chicken, egg salad, etc.) I'd rather not take the chance that it will make me sick.
My counters and drawer handles are wiped down with sanitizing wipes on a regular basis. I run a "pot scrubber" cycle on the dishwasher too which is an extra long cycle.
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Well, my hair is finally falling out in larger clumps. On Sunday (day 13) it was just a few strands. Today (day 17) if I just run my hands through my hair several strands or small clumps will come out.
I've put on a hair net to sleep in tonight. I have to get through the weekend and chemo on Monday. Tuesday I have an appointment at the cancer center wig shop. That will be the day I get buzzed. Not looking forward to it but it's part of the process. I have some caps ready.
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I had my last AC yesterday and that was uneventful but I have swollen ankles and had very elevated liver function tests ( they were normal a month ago) and now I need an echo and liver ct scan! The irony is that I’ve been feeling okay. Worried about this. Actually glad to be able to go to work to be distracted today , getting more labs this morning and other tests on Monday
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Farfalla- despite the scan and echo I hope you feel GREAT about being done with a/c. I hope all tests come back normal and that you are able to head right into Taxol!
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Bam320 thanks for your kind words. Echo to rule out dvt and liver ct were entirely normal. So it’s a drug reaction, likely due to macrobid for the uti but hard to tell because so many meds! Tired, in urgent care from 1 to still now, waiting for nurse to be discharged.
I just need to get labs repeated to make sure the trend is going down.
How are you doing? I am v glad to be done with AC
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Farfalla - So glad your labs are headed in the right direction! I have a/c number 4 on Tuesday. I am over it! I really have had minimal side effects for the most part but tired of the underlying nausea and just feeling weird that has hung around longer this time. My mouth has really been sensitive and I have sort of cracks/sores in the corner of my mouth/lips. I am even getting sensitve to Biotene toothpaste. I also have an overgrowth of yeast on my leg/groin area so I got a prescription for Nystatin. How sad is it to say that I am actually looking forward to taxol for a different experience! Another exciting thing is I got another wig which I like a bit better than my first one. Life is good....a new type of chemo coming soon and a new wig...HA!
Myfavorite - Happy 40th! Next years celebration can be a blow out!!
Twelevestrings - I have my last a/c on Tuesday too. So thankful to be almost done a/c. Any side effects I have had definitely lingered with #3 but I feel I can handle it better with #4 knowing it was the last one.
Mountainmia - How did things go yesterday? I have not really changed much about my food prep but have been careful with left overs. As far as hygiene, I have been washing my hands a lot more in hopes of not picking up any bugs.
Msmarie and DebraC - Hope everything is going well for you both.
Fac03 - how has your pain been? Did you end up doing your next treatment?
Ellientta - how are you doing? Did everything get worked out with your port and how was your bone scan?
Have a great weekend everyone and Happy Mother's Day!
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Thanks for asking, Bam. You're a terrific host!
I'll copy here what I put in the May chemo thread. My first infusion was yesterday.
I'm to do a TC (taxotere/cytoxan) regimen, 4 cycles 3 weeks apart.
First I had a blood draw for lab tests. I had CBC and a liver enzyme test, something else. Everything reported within range. After blood draw, I met the RO for the first time. She talked through the process, drew pictures of how the radiation is aimed, talked about SE. After chemo is over, I'll start 20 radiation treatments.
After the RO, I went back to the infusion clinic. Got settled in there, had 3 steroid pills by mouth and was started on an IV on something for nausea. About 40 minutes later the pharmacist came to verify the drugs they had for me and to talk through SE with me.
While the pharmacist was there, the nurse began the taxotere infusion at a slow speed. Got a few milliliters into it and I reacted, flushed and got hot. They stopped the infusion right away, more nurses showed up like magic fairies. They started pumping benadryl in me. Between the drugs and the reaction, I was a bit dizzy, slightly nauseous. That calmed pretty quickly in real time, but it seemed like a long time to me.
I had to pee (boy did I, and I think in less than 5 hours at the hospital, I went about 6 times. TMI!) So they got me up and carted me to the bathroom. After that and another 20 minutes or so, they started the infusion again. The pharmacist assured my husband that reacting a second time would be very rare, no reason to expect that would happen. But it did. I got very hot again, felt bad.
They stopped the infusion the second time. Contacted my MO. So far I'd only had about 20 ml of 250 in the bag.
The MO said to stop and send me home. I'll meet with him on Tuesday and might be scheduled to do my FIRST infusion next Friday. Yeah, have to start over.
I had a big nap. The benadryl wiped me out and left me very dull and druggy. It's amazing I was capable of writing this!!
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farfella6 - glad to hear that your test results look normal, hope you get to rest today.
I haven’t changed much around the house with respect to cleanliness and food prep but I am washing my hands more often. It was a good thing to bring up though because I guess I hadn’t thought about it too much and should be more careful. I did get pretty down with a cold/ cough after my 1st round of chemo and do not want to get sick again this time
I just want to say that I am inspired by all of you as you go through this and to be almost finished/ finished your first 4 rounds of treatment must feel like a milestone. I know this is a long process with different treatments to get through ahead, but we are strong women who can get through this!
I had by second round of TC this week (Tuesday) reactions were similar to first. Nothing really new just more fatigue etc. My down day turned into a day and a half this time. I feel pretty good today thoughwent to my Saturday boot camp which was super hard and I might have pushed myself a little too much - I might need a nap later but the sun is shining and looking forward to enjoying the day!
I hope everyone is having a good day
Laura
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Bam, although I don’t have AC, but TC, I’m so with you regarding the tiredness and underlying nausea and feeling weird. Sorry to hear all your mouth issues.
My taste is off, but my mouth is doing good with the Biotene toothpaste and mouthwash.
One day I was soooo missing the crisp feeling of regular toothpaste, so I used our regular whiting toothpaste. Lesson learned, my mouth was soooo tender after for a couple of days. I never got sores. Not doing that again.
Got myself a new straw hat to wear, more comfortable and breathable for my scalp. Getting braver about going out with a hat or beanie. Leaving “Fluffy” (name for my wig) at home most days now.
Next week, Tuesday is #3. Not looking forward to the down days. Seems like it took longer to bounce back, never really 100% from #2. But I’m halfway done, only two to go!!!
MountainMia, wow, sorry to hear your reaction to your first treatment, hope your MO can figure out a new plan that’s easier on you.
Everyone have a great weekend!
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Hi Everyone,
Like DebraC, I have my third round of TC on Tuesday next week. Similarly, didn't bounce back as quick as the first round. But will be glad to have it behind me. Particularly the mouth tenderness...
Much to my surprise, I'm having some spotting... I THINK from my urethra. Not having symptoms of a UTI. Haven't had a period in a few years. But you cannot deny the bright red when going to the bathroom. Called my MO office, UA ordered. Guess I'll see what's up with that (never had bleeding when peeing before).
Youngest graduated from nursing school on Friday. Yay!
Hope you're all having a great Mother's Day!
Rock On!
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I haven't posted in awhile, but I finished my final AC last Thursday, WooHoo!
Word cannot convey how good it feels to have that behind me. Yay for farfalla too!
I had a little more fatigue than before but otherwise all is well.
Bam, hoping your last AC goes well. Sorry about your mouth. I have been using a rinse for sensitive mouth called CloSYS and you can get it on Amazon. Maybe that would help if Biotine not working for you.
MountainMia, so sorry about your reaction. I am nervous about similar when I start taxol. Ugh.
I lost maybe another 5-10% of hair. Will keep doing Paxman as long as I have significant amount left. I guess I have 35% still hanging on.
Hope everyone else is doing well. MM.
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Twelvestring60 I did mean to leave it for the imagination :-)
I have been offline for a while, I managed to have the AC#2 postponed for a week, and tomorrow will be AC#2, but my neck is still hurting. I think it was due to strained muscle. When the neulasta kicked in on day 2, I had shoulder/back/neck pain which made getting up extremely difficult and I think I have strained my neck when I pulled myself up. It has been so long that I forgot how to get on the bed.
In the past 3 weeks, I have non-stop pain, first neulasta, then the strained muscle. I am not sure how I can continue.
BTW, my oncologist finally told me I should take claritin in particular of the day of the treatment.
good luck everyone for your treatment.
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While I'm grateful to be done with the AC, it has been a tough road. First I had v elevated Liver enzymes, and needed a CT scan. That was thankfully normal (but even thinking about having to drink the oral contrast makes me so nauseated) and they've come down, but not quite normal. Then I had really swollen ankles and needed an echo- that was normal and ankles are back to normal. Then I seem to have picked up a virus my kids have and had a high fever, but I'm not neutropenic because of the Neulasta so they're just watching, But I had to take several days off of work for all this and I;'ve just felt like crap all the time. I've lost more weight (I'm thin to begin with) and nothing tastes good to eat or drink. So yeah, feeling sorry for myself. And I've become what I was trying to avoid: the bald skinny mom in a head scarf napping constantly on the couch. I know I'll feel better at some point, but its nice that everyone here understands these moments....
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Had my fourth weekly round of TH yesterday and all went well. I met with a very nice NP for my weekly checkup and a new infusion nurse. So far today I've felt ok. In the afternoon I went to see the wig consultant at the Cancer Center. Got what was left of my hair buzzed off and tried a few different wigs on. Some of the wig styles and colors looked really great. The consultant has another style coming in for me to try next week before I finally select one.
I'm expecting my "down day" tomorrow as all the steroids wear off. Got my fridge and cabinets stocked with grab and go items.
Farfalla6 - I hope you feel better soon. Seems like a rough patch you are going through right now.
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#3 done! One more to go. The nurse bent a needle in my arm trying to get the drip going. Can't wait to get chemo behind me!
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ILOVERMONT, looking good! Doesn’t it feel great to only have one more to go!!!!! We can see the light at the end of the tunnel for this part of treatment.
I did #3 yesterday too. All in all, went smoothly, no issues. Kinda on steroid high today. Tend to over do it.
Have a litter of golden retrievers due next week, so getting their space all set up. DH is going to manage this litter, with support from some other breeders as needed.
Got a cute visitor at infusion center. An adorable mini golden doodle visited with me for a few minutes. He was about 30lbs, miniature compared to my 80lb Goldens.
Also chatted with another woman, different cancer, 6 years worth of treatment. She was very positive and upbeat. Made the time fly by.
I’m sure my down days will creep up on my tomorrow afternoon.
Sending positive thoughts for those having treatment today or this week!
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farfalla6, I am sorry for what you had gone through, it was tough. I can't imagine how you handled it. Let's hope it will be much easier for T
ILOVERMONT, congrats, one more and done
DebraC, congrats on 75% completion
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Hello everyone! You all remember so much, I feel bad that I dont keep up. So caring ..
So many different stages of treatment and similar side effects for all. People starting chemo, halfway through, almost done. I truly wish everyone the best it can be.
Last ac was Tuesday and then onto Taxol once a week for 12 weeks. Im a bit nervous. They want me to take a huge amount of steroids 12 hours before, and then more the morning of. Talk to doc about benedryl since i have a reaction. Glad im half way done. It kinda caught up to me these last two weeks. Junior Prom for daughter and I was kinda on the couch alot. I tried so hard not to be laying down when she gets home.
Farfalla6, maybe something sourish to eat? I discovered that lemon chicken cutlet with linguine, chicken broth and lemon cooked in it tasted like it was supposed to! Maybe it would help a bit?
I think about everyone here. I am grateful for your posts. I wish I was better at posting. I feel I forget people.
Lots of good thought to all!
Dorene
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Twelve string, Fac03, Creaturekeeper, thanks for your kind words. I am back at work today (office) and am very tired and winded, but at least Im upright! My resting heart rate used to be mid 50s, now its mid 80s. And I'm ridiculously thin, I'm hoping with enough makeup smacked on and a great wig, I look semi normal. From a distance. Really want to stop now and not do the taxol, but I will. I do get so much hope and encouragement from all of us here going through this. I would feel so alone otherwise.
I've been terrible with food, eating so unhealthy, because I was told just to take in some calories. Grilled cheese, cream cheese and bagels, and ice cream, peanut butter are all I can taste normally. I am forcing myself to have some protein, beans, chicken, will try the lemon as suggested by 12strings. Back to work!!
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My taste buds have changed, same as last time -- salty things are great big nah. I ate a lot of sour and sweet last time and that's holding on so far this time too. Surprisingly, I haven't porked up at all yet. I was really looking forward to becoming a dumpling, bought new fat clothes and everything, but nope, so far I"m holding at my normal weight.
Every day is pretty much a fatigue truck day for me now, just varying degrees of getting flattened. Pokemon Go community day is this weekend, though, and I'm still going. Might not be able to walk the whole 3 hours, but I think I can do 2. Going to wear a fun wig I bought last time, purple dreadlocks. Its dreadful heavy, but I think it'd go a long way toward smoothing things over for my poke-peeps who haven't seen me since I became Madame Baldy. Not as upsetting for them, ya know? The question is do I wear my cat ears headband too. Might be overkill. LOL
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ILOVERMONT and DebraC - Congrats. I too had my 3rd TC this week (Tuesday). Although no pics to share
I had a thread that was not clipped short enough when placing my port that poked through my skin. Had to go have it cut off on Monday. Made me a bit nervous as we certainly don't need to invite infection. Did not delay infusion and is healed over now.
Feeling tired, but getting through the work days. I gained 3 pounds between treatment 2 and 3. I'm sure it was because I was eating lots of sweet things as that was pretty much all I could taste. But taste came back just in time to get zapped again. REALLY looking forward to final TC and putting this in the rearview mirror.
Tuesday (May 14) was official Chicken Dance Day, so I turned up the music and did the chicken dance in the chemo room. Although no one joined me in my cluckiness, it did gain a lot of laughs and some stares.
Farfalla - hope you're doing better soon.
For those of you going on to radiation, there is some awesome cream that my RO had me apply twice daily that prevented burning or blisters (I did radiation first, hence my name on this blog). As a matter of fact my skin didn't change until AFTER my 20 rounds were complete. The cream is called "MyGirls". Amazon was sold out when I shopped, so I went straight to their website. A little pricey, but worth it in my experience. Here's a link: https://mygirlscream.com/Calendula-Skincare-Cream-for-Radiation-Burns-Skin-Side-Effects-Cancer-Treatments/
Although I don't post often, I do think of everyone and read your posts daily.
Best to all this weekend.
Rock on!
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Robnredbreast, would have loved to see the chicken dance
Thanks for the lotion recommendation, that’s where I’m headed next probably at the end of June/Beginning of July.
Sweets are all I can taste too. Gonna have to get a grip on that when this is over.
One more to go and we are done with TC!!
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Thanks for the cream recommendation! I am a little behind others and will be doing radiation in August. I have been reading the April 2019 Radiation thread and seems some get very burned. I am trying not to stress about that though and just cope with one thing at a time.
I had my 2nd of 4 TC's last week and was feeling pretty good this week until I got another dreaded UTI. I hope this is not an every time thing. Is anyone else having issues with this? I hate UTI's they are so uncomfortable until the antibiotics kick in. As if we are not going through enough Uggh!.
Robinredbreast, did you end up having a UTI?
Also, I agree eating sweets is a problem. Me too.
Laura
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Check with your radiologist before forking over $ for creams. Mine wouldn't let me use anything except aloe vera. I could only use a specific soap through rads too. I applied aloe vera 6x/day and didn't burn much. I also got a sports cooling towel and applied that once/day, usually after my daily rads.
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Laura - I did end up with a UTI with round 1 and took abx. The most recent blood in urine during second treatment round (2+) did not show any bacteria, so I have been referred to a urologist. However, it seems to come and go (seeing the red/pink/brown tinge). May just be that I need to drink more... I guess I'll find out. No appt yet with urologist, MO thinks they will likely just monitor, and if symptoms persist post chemo they may do a cystoscope.
regarding MyGirls cream. As you will notice if you look at the website the cream is specifically formulated for breast cancer patients receiving radiation. But yes, always validate with your RO (as PrincessofMeh suggests). My RO had other cream recommendations too. The MyGirls cream was her first recommendation for day time cream and I followed her instructions to the letter. Aquaphor was applied at night (which I bought at WalMart). The Aquaphor is greasy, so slept in old cotton tee shirts.
Yay to nearing the TC chemo finish line! Now if we can just keep the SE's in check...
Best to everyone.
Ro
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AC#2 on Tuesday was much better than AC#1, minor bone pain. I would take one oxycodone when I begin to feel the shoulder pain. But as much as possible, I just took two Tylenol. I assumed the Claritin works.
During the treatment on Tuesday, I told the nurse on how much I learned from this board. She told me that I should be careful as many of the information were incorrect. I reminded her that they did not provide me any information and everything I learned I learned it from here. She did not seem to approve, but do I care? I told her I was absolutely disappointed that the oncolgoist's team abandoned me when they did not realize my shoulder/back/neck pain was a side effect. They sent me to my PCP and asked her to look into it.
In the first three weeks I lost about 10 lbs, not because I lost appetite, but that sleeping helped me not feeling the pain. I am already overweight, therefore the 10 lbs was a welcome change, but I suspect I may gain them back I begin eating more.
Before AC#2, they measured my Hemoglobin and told me it was low (9.1). My normal range was around 10.3 to 11.2, they told me they couldn't figure out why and asked me to make an appointment with my GI doctor. Honestly, I do not know what the GI doctor can tell them as three years he told me I had blood in my stool and he did three different tests to try to find out where the blood came from but only to tell me that he did not think there was any blood in my stool. But I am going to make an appointment anyway.
Reiki was offered to me as part of the treatment and is free. I tried it before AC#2 and while I was still having the neck pain. I was not a believer to begin with, but after about 10 minutes, I felt that some of the pain went away. I will be scheduling another appointment.
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Hi friends. A lot of us have taxane-based treatment, with taxol or taxotere. One way to minimize neuropathy SE from taxanes is with cold therapy. I had a hard time finding good information on how to do this, so I put together my own thread on it.
COLD THERAPY TO PREVENT NEUROPATHY
If you have comments, tips, advice, or ideas on using cold therapy to prevent neuropathy, I'd love it if you could add them in comments there.
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I used freezer-pak socks, and I iced my hands in a bowl of ice water too. No nail or neuropathy issues. But I also did the fasting prior to chemo as well as quite a few supplements, which I think helped.
I am sure the cold does some good... I did cold on my scalp too, after infusion #1. My hair fell out from that first infusion with no protection, but it had begun to grow back before my last infusion. I did not use the official paxman or other system, but rather bought some freezable caps on Amazon for migraine sufferers.
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I am still so so fatigued. Barely able to drag myself into work. I know I’m anemic but I’m not sure I should be feeling so crappy. I have an echo today, scheduled from when my feet were swollen ( that resolved) so we’ll see. Thinking of taking s leave from work.
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I couldn't imagine working through this. The fatigue toward the end...no. Just no. But even before that, my brain just gets too scrambled. For an author, word-dropping is a nightmare.
Spa Day #3, my halfway point, is Wednesday. On the one hand, halfway, YAY! Also, my onco thinks this might be the one that exits Mr. Lumpy from the building entirely. Also, YAY! OTOH...not looking forward to what's coming either, especially knowing the 2nd half will be worse, by a lot, than the first. Right about now is when energy budgeting becomes a legit thing because I won't be able to keep up with all that I usually do and want to do. Already is, really. I'm making jambalaya and peanut butter swirl brownies for my brother's birthday. Hubby wants to go shopping after for a new couch. I just don't know if I'll have the oomph.
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