Starting chemo April 2019
Comments
-
PrincessofMeh, great attitude. You will better by tomorrow.
stayingpositive2019, I met with my oncologist this week, she sent me to the ER and was quite sure it was a blood clot, when it wasn't and with the increased dosage, I told her it has improved, I suspected she may just want it to ride it out. Today. it was indeed better until they found out I was taking tramadol along with alooxycodone and did not give me a refill of the tramadol. I am contemplating on not doing AT #2 next week if the pain persists.
0 -
I had #3 A/C on Tuesday. Side effects are the same as they have been. I did get Biotene toothpaste which has helped so much. Since i am back to work I am more tired at the end of the day and came home yesterday and took a nap. Looking forward to tomorrow to be able to sleep in! It does feel good to be back at work and having something else to focus on! At my appointment with my MO we talked about Taxol. He gave me the option of taking an extra week off between a/c and starting taxol to recoup a bit but I chose to start taxol two weeks after a/c. Hope that does not come back to bite me. I just want to power through this and get it over with. He also recommends taking Glutamine powder while doing taxol to hopefully prevent neuropathy. He feels that cold mitts help with the effect on nails but not so much with neuropathy.
Princessofmeh - sorry you are so tired. It stinks but I have faith you will be bounding back soon. You seem to have boundless energy so I am sure feeling this way is rough.
Fac03 - sorry to hear about your pain. I hope they can find a combination of medications to help you.
Stayingpostive - sorry about your birthday. Just think, next year will be an entirely different scenario!
Have a good weekend everyone. Let's keep getting through those bad days and enjoy the good ones.
0 -
bam320, time really flies. Congrat on one more and done with AC.
Sigh!! I really have to vent.
I spoke with my PCP today, I am totally disappointed on how my oncologist's office resolve the SE for me. I am okay if they can't resolve the problem, but they immediately dropped the ball after I mentioned "torn muscle" bothers me as I do not know how I can have a honest conversation with my team.
I wrote earlier that my shoulder and neck pains popped up on day 2. Day 4, the PA gave me a muscle relaxer. Day 5 they gave me tramadol, Day 7 after a CT scan did not review anything, they gave oxycodone, after I began taking all the medication combined, then I saw the improvement beginning on day 8. But on day 10, they found out I took both oxycodone and tramadol and told me that I could not take both, but they gave me a new prescription for oxycodone and told me I could take up to two oxycodone at a time.
last night and this morning, I only took one pill of oxycodone as they also told me they did not think tramadol contributed to the improvement, therefore why should I add another narcotics drug in my system. Most of the pain gone, but there was still an area in my neck that bothered me very much. I am not sure what the problem was, but then I remembered two day ago, I tried to get up without assist and I may have twisted my neck. Therefore, instead of bothering them, I went to an orthopedic walk-in clinic to eliminate that it was a possibility. But the clinic only has a PA and I was told that he would just get me to have X-ray and would send me to pain management. It wasn't what I wanted, therefore I left without seeing the PA.
Later in the day,I was so painful that I called the office and see what they could help me in terms of pain (tomorrow is Saturday). They were upset when they found out I only took one oxycodone pill ( they can just ask me to take two). Then I also told them I suspect it may be due to a torn muscle. As soon as the nurse hurt the word, she began screaming at me that I should call my PCP. I tried to explain to her that (a) it wasn't established that I had a torn muscle and (b) my PCP does not know the history of all the treatment I had with them, but she wanted no part of hearing anything I said and told me she would call me back.
5 minutes later, I got a call from my PCP's office to schedule an appointment today. The PA from my onco's office called me saying the oncologist had spoken with my PCP and my PCP should be seeing me, then to add insult to the injury, he added that they never believed my pain was related to the SE. (Up to this point, they never asked me what I meant by torn muscle and never asked me when it happened).
I told my PCP the time sequence and she talked to the onco and asked me to take 2 pills. Tonight with 2 pills, the major pain are gone, but my neck is still aching and stiff. With I meet with my onco next week, I plan to let her know that I am very disappointed with how they treated me. Note at this point, we do not know what underlying problem is, as a member of the team, I tried to look into all possibilities to discuss with them, but it seems to me that they look for any opportunity to dump me. Very disappointing.
I am still concerned with taking 2 oxycodone pills every 6 hours. I do not want to become an addict.
0 -
I'm so sorry you're having trouble with your med team and hope those troubles are resolved soon, Far!
Steroid buzz finally struck today so I'm definitely grooving now, got a lot done. Rest? What rest? LOL
0 -
My second round of TH on Monday went well. Wednesday was my "down" day again but I didn't have the weird smell sensations or lightheadedness like the first week. I've been drinking more water and getting more rest. That seems to help.
My body hair is just starting to come out. Hair on my head is holding on but I'm itchy in spots. It may be time for it to get trimmed off soon. I have caps, a wig and a halo ready to go. On this coming Monday night one of the ladies that runs the wig and supply shop at our cancer center will be meeting with our support group. That should be a good meeting.
0 -
Hope everyone had a good weekend. Good luck to those headed for a treatment this week. Stay strong ladies! 👍❤💪
0 -
I hope is gets better Karen.. Geeze.
Your big girl pants cant be put on any higher!!!
Dorene
0 -
tomorrow is supposed to be second AC, but planning to tell the doc to put it on hold until they recognize my pain was due to SE, if not, then let know what it is.
Hair on my head seems to be holding up, but hair in other area comes off, strange.
0 -
Fac03,
"Other areas?" face, lashes, legs.
(Trying to get a smile....)
Dorene
0 -
Colpo this morning, which I think is spectactularly unfair. Chemo should call a temporary moratorium on all other uncomfy procedures IMO because seriously, if anything else is going wrong is not like I especially want to know about it right now, LOL, but alas, colpo it is.
Hope everyone's rocking an SE-free week of woot!
0 -
One of my recent blog posts on someone who inspires me and thought I would share:
Just after my diagnosis, when my head was spinning with all the 'what-ifs', my boyfriend texted me this article about Kikkan Randall's cancer journey and right away I knew I had found my inspiration. Kikkan won the first American gold medal for cross-country skiing in Pyeongchang, South Korea (along with Jessie Diggins) when she had breast cancer--although she didn't know it yet. Her journey began just 3 short months later - she found a lump in her breast after a day of hiking with her husband and 2-year-old son on Mother's Day, no less. She was 35. She went through a grueling treatment but kept physically active all the way through, which I plan on doing. I've been told to rest, rest, rest and take care of myself and there have been and will be times I will yield to that but I found myself latching onto something Kikkan said: "I don't think cancer patients are told enough what they can do." I was hooked.
Here are some other quotes by Kikkan that keep me going:
"Things like this are indiscriminate,'' Kikkan says. "Doesn't matter if you're a good person or you're totally healthy. Sometimes this stuff just happens, and there's a lot worse things that happen to really good people, and they've come out stronger because of it. This is something I can get through, something I can manage. I try to acknowledge those things and reframe.''
"Catching my reflection through the car window in the mirror. I have no choice but to embrace it.''
"Whenever I start to go down that road of fear of recurrence, being frustrated at what this has disrupted, at how this has altered me in ways that will never go back, I just kind of go, 'Well, we don't know,'" Kikkan says. "I could live a long, healthy life and never have a problem with this again. Or it could crop up in a really nasty way, soon. I have to do all the things I can to give myself the best chance, but I can't control that. It's worth trying to appreciate the moments you have right in front of you, because that's what you have control of.''
"Your mind wants to go to the what-ifs,'' she says. "That could become really daunting and scary and bog you down. But you can't control it. You can't will yourself through that. I'd rather just acknowledge that, and bring it back to, 'OK, I feel good right now, I have this amazing family, I can do all this stuff. I feel way better than I did a couple months ago."
Kikkan and her husband collaborated on a project to create wildly colorful socks imprinted with the words "It is going to be OK!'' -- incorporating a pink K for Kikkan. Part of the proceeds would go to AKTIV Against Cancer, an organization that promotes fitness for cancer patients and survivors. Phil bought me a pair of these socks to keep my feet warm during my infusions, and a pair for himself for running.😍
Her treatment behind her, Kikkan recently visited Vermont to speak to young female cross-country skiers which was covered by the local news which I just happened to catch. I would have attended had I known. Her hair was short and dark and she was sporting an OK hat but there was no mention of her cancer battle in the piece. That says a lot about her- she doesn't let cancer define her life. I don't plan to either.
One more thing about what I learned from her story: life can open a trap door without warning under anyone, even the strongest person in the room. Kikkan went from being one of a kind to one among many, a club no one wants to be a member of. You have to stay positive, stay active, be grateful for the good days, love hard the people supporting you and you will come out the other end even stronger.0 -
Thank you for sharing that, mont! That's exactly how I feel -- we're told so much what we can't do. I wish there was more focus on what we can. I know my body. I know what I can handle and what I can't, when I should rest and when I can go, go, go! If I'm having a Go day, leave me to it, right? Even better, go with me! Yes, I have breast cancer, but it doesn't define me. I absolutely will not let it take up more rental space in my life than I absolutely have to give it. I still love my adventures and breast cancer doesn't get to take that away from me, in treatment or out.
0 -
I like that too, focusing on what we CAN do. Ive had moments of being laid low, but I'm also able so far to continue working full time, and for me that is so important: it gives me a sphere where nothing is about my cancer, makes me forget myself and connect to others. I have AC #4 coming up this thursday and I'm eager to be halfway through with that. AC has not been as tough on me as I feared, but I worry that Taxol will be harder. But taking it day by day. Good luck to everyone who has a treatment coming up this week!
0 -
Hi, ladies! I've been offline for a few weeks, because I've been blowing and going since I started my chemo treatments. Within 3 days, I was usually back to myself and feeling great. I've not had the chemo-fatigue hit me yet. However, last week, I had my third treatment of AC (yuck!) on Wednesday. I felt really good on Thursday, but started to fade on Friday. I woke up on Saturday morning at 4:30 with the worst headache I've ever had in my life. It took tons of water, meds and sleep to finally shake it off enough to stand to talk to people by Saturday evening. I will be asking my MO for a bag of hydration after my treatment next time.
What I'm struggling with now is the change in my taste buds and the nausea feeling that won't go away. I'm from Texas...we drink Tea...a lot of Tea. I can't stand the taste of tea right now, or water. It's hard to stay hydrated when you can't stand some of the basics.
Anyone had any luck combating the taste buds issue? Or the constantly nagging nausea?
My 40th birthday is coming up on Sunday, and I'm really hoping to be able to go out to dinner with friends to celebrate. However, I feel like just curling up and staying in.
0 -
Hey, MyFavorite, sorry you're having a rough round. Happy birthday on Sunday. How would it be if your friends brought the dinner party to you? If you warn them ahead that you might only be good for an hour or so, you might be glad you saw them.
0 -
ILOVERMONT,
Thank you for sharing, awesome story. Love it.
MyFavorite, I'm heading to my last AC Tuesday May 14th, then to Taxol. Things did get a little more pronounced, headaches, stomach and loss of appetite for first time and stuff. The horrible taste? Super sour stuff seems to help. I had lemon chicken with linguini the other day, extra lemon squeeze. (tasted before I put more on, then more. hehe) It was the better of flavors. Super sour stuff.. Doesn't make it go away but it actually tastes like its supposed to! Sour raspberry hard candy.. :] Natural food store had some crazy awesome ones. I tried them a long time ago and thought, "who the heck would like this?"Not a lot of sugar. We have a great store a few towns away with the owner up on everything.
If your a massage person for headaches, and feet rubbing? I do it myself because for some reason, I don't like people doing that for me. but It really does help me a lot.
Hugs to you all,
Dorene
0 -
MyFavorite,
Have you ever heard of NUUN? They are little dis solvable tablets that you put in your water bottle. They come in a variety of flavors, but they have virtually no sugar and lots of electrolytes. I use them all the time. Not too sweet and just enough flavor to keep downing the water. You can find them at Dick's Sporting Goods or online. Just don't get the ones with Caffeine in them. I am a week post round #2 of TC and they have been a lifesaver when I can't taste anything. Happy Birthday! :-) I turn 41, July 1, two weeks after my last round! Can't wait to celebrate!
0 -
I have my first TC chemo on Friday. My hospital doesn't offer a "class" to prep for it, so I feel a bit at sea knowing what to expect.
Can some of you with experience give me an idea of what to expect? ALSO what should I take with me? Sugarless gum and hard candies, something to read, lip balm and lotion, ??? and what?!?
Thanks in advance for any help.
0 -
MountainMia, I took some nuts and water even though they offer those there. I also brought a lightweight blanket in case of a chill. Book definitely. Maybe invite a friend to keep you company even for an hour. It will break it up. Good luck!
0 -
MountainMia - a blanket, fuzzy socks, something to occupy your time, a book, ipad with games...., something to drink, a snack.
My center had blankets, pillows, snacks and drinks. I couldn't eat anything they had - my taste was so off - or drink anything - sodas and water taste awful so I brought my own. Having my DH with me was the biggest help. My center is very cold. There were times I use my blanket plus one of their's. The socks were much more comfortable - mine had non-slip soles.
I had a lot of nausea. Hopefully, you will not. We did order, and they were a life saver, disposable vomit bags. Sounds gross, but so much better than trying to pull over in traffic or get to a bathroom quickly.
Is there anyway you could take a quick tour tomorrow? My center did not have chemo class either and I was a nervous wreak. My MO suggested I come and take a tour. I was still scared but at least I knew some of what was going to happen when I got there.
Check out Tiffany's terrific tips on this site. Very helpful.
0 -
Don't forget t take claritin, starting today, if you will be getting a neulasta shot...
0 -
ILOVERMONT, Annie, and santabarbarian, thanks for the tips. I did get to speak with a nurse yesterday so don't feel quite as uninformed! I guess part of my difficulty is the same as I always get trying to pack for a trip. I hate packing too much stuff, but also don't want to leave out something important. AND as to this, I don't want to haul a suitcase full of stuff with me, but I can't shop for what I forgot once I get there!
My MO said we won't start with neulasta but wait to see if I need it. I take claritin every day this time of year for seasonal allergies, so I'm ready if I misunderstood or if my bloodwork shows me as already needing the shot.
I'm not planning to ice my hands and feet but I do hope to be barefoot in my chair, with feet not under the covers, and just let them chill naturally. Hands, too. My hands are usually cool, so I'll keep them uncovered and hope for the best.
And YES on Tiffany's tips! I stumbled on those and to my surprise, realized she is the daughter of a great friend of mine. Here's the link for anyone wondering. It's Tiffany's Twenty Terrific Tips for TC.
0 -
MyFavorite-I’m also a hard core tea drinker. I couldn’t stand the taste of tea during chemo, and I wasn’t a big water drinker. I was so lost. In so many ways, but enough of that!
You might try a ginger or ginger-lemon tea. Twinnings and Celestial Seasonings both have decent varieties. You can also boil sliced ginger in water for about 30 mins, strain the ginger slices out and drink the tea hot or cold.
I found that I could drink room temperature filtered water (we have really hard water here, and I just couldn’t handle the calcium taste). Cold water was no good. I managed to drink 3 L of water each day during chemo-and I still drink a litter of water a day.
Best to all of you!
0 -
Lemonade was my drink. I made my own so I controlled the sugar. I wanted it super sour. Anything with artificial sweetener tasted awful.
0 -
Question about cleanliness: how careful have you all been about food prep and personal/bathroom hygiene during chemo? Have you gone to the effort of scrubbing all fruits and vegetables before eating? Have you wiped down the toilet with clorox wipes each time you've peed? What efforts have you made and which recommendations have you ignored?
0 -
Hi Mountain Mia, I have tried to be careful with fruits and veggies. Not buying already cut up fresh fruit in the store and being sure to wash thoroughly. I have not really done anything like wiping the seat in the bathroom but have flushed twice in the couple of days after chemo because I have a dog and cat that drink from the toilet
0 -
Woot-woot...thanks, ladies! The nausea is finally gone. I guess it's just that "it gets longer to recover after every treatment" thing they told me about. I'm not a good patient (just being honest), so I expected to be back up and running at full speed by Sunday like I had before. I don't like delays. Ha! I'm still working on the taste buds thing. I actually found some stuff my sister bought for me before I started chemo...and I think it's helping! They're called "Soothease" natural candy comforts. A cancer survivor, and holistic chef, developed these after she dealt with the SE of chemo. I would recommend them to anyone looking for something else to try.
0 -
Hey, MountainMia... I haven't made any changes in how we cook at home, for the most part. However, I watch my leftovers and fresh foods more closely than before.
For the bathroom, if you have more than one at home, I would recommend "reserving" one for yourself for the first three days after chemo. If not an option, just ensure you flush it twice after you go every time those first few days.
For your treatment bag prep, I always take this huge bag in with me and end up never using anything more than my blanket and phone. LOL But I'm always prepared just in case! I would suggest taking a good pillow with you, though, because what they usually have at the centers are hard and flat. Headphones for your phone/tablet, blanket, a book, and most importantly...a friend.
Best of luck to you tomorrow!0 -
Thanks, Sparklegirl and MyFavorite. Other than a couple of items, I think I'm ready to go!
0 -
Cooking is the same at my house, but several things are on my personal no list. No fresh berries (raspberries, blackberries, etc) as they are too difficult to wash. I limit my personal consumption of those to frozen varieties, but still buy them for my family. Otherwise, I cook like I always have and eat quite well. Build your own nachos night at my house today, woo hoo!
I take a fabric reusable shopping bag I like with me to every chemo. It invariably contains: whatever craft project I picked for the day, whatever cooking magazines I've accumulated since last spa day, extra water, sugar-free mints, a puzzle book + pen, external battery + charging cables, KFire, phone, and cash to send the hubby up to the cafeteria for lunch. I go loaded for bear because me getting bored would be spectacularly unwise. You've gotta know your limits and I'm not a woman who can just sit and chat. I have to do something with my hands too or I will drive myself crazy and take the entire cancer center with me. LOL
0
