Chemo Starting August 2018
Comments
-
I finished my last chemo dose and I rang the bell hard. The nurses clapped and the smile on my DH face was to treasure. Guess I forgot the bell wasn’t just for me.
MGJ. You stand in the chemo bay on Monday until they give you the chemo reports and then call him to ensure they were actually reviewed and it is safe to proceed. You go and get what you need to kick cancers butt!
I am so tired and sooo stupid. I can’t even count pocket change. I put a chair by the stove cause if I walk away I forget I’m cooking. They say it gets better... I hope it does I need my smarts back.
Keep it up everyone we are going to get there.
0 -
CONGRATS Kelly-Anne. 🎊🎉
0 -
Whoo!! Way to go Kelly Anne!
0 -
Congrats Kelly Anne! Yay!
0 -
MGJ: don’t skip treatment; you need to do this for you. Go in there and get what you need, lady. I’m sorry this has happened to you; let’s hope the Center in Carson City is better. Fingers crossed; thinking of you.
Kelly-Anne: WOOOOOHOOOO!!!
0 -
https://www.breastcancer.org/treatment/hormonal/serms/tamoxifen
MGJ - Your post about antidepressants being contraindicated with tamoxifen lead me on a search and I was horrified to see that benedryl (which I use regularly for allergies and sleep) also renders tamoxifen ineffective! There is an article on this site about tamoxifen which includes which meds to avoid. For some reason, I can only add it at the top of this post!
I also read that cancer cells can become resistant to tamoxifen if there is light I the room when you sleep, because it reduces melatonin I’m gong to ask my MO about taking melatonin and I’m also getting some blackout curtains for my room.
I know we have to be our own advocates, but I hate that so much of what we learn we just have to stumble on
0 -
MoonGirlJess, Oh my word!! Good for you checking up on the combo of the two drugs and for getting another opinion! We have to be our own advocates these days. Professionals in the medical field just don't care about their patients anymore. It's about for profit for them.
We were unhappy with my care and we drive an 1 1/2 hours to 2 1/2 hours depending on traffic, to go to John Hopkins in Baltimore. Best decision we ever made. Glad you are seeking another opinion!!
Congratulation to you all ringing the bell and completing your treatments! YAAY! I am here until Jan 29th, as long as there are no set backs.. CANNOT WAIT!
I had my 3/12 Taxol treatment Tuesday and no side effects. Yesterday I felt rough. Very achy and tired, but got a good nights sleep. We shall see what today holds
ENJOY your weekend ladies!0 -
Smiiing Dawn, wishing you a good day!
wanderweg, I agree 100% re "stumbling upon" stuff rather than being told! So frustrating!! That's why I wrote so much about the info I got from the integrative Dr in Chicago-- to share that info widely.
I think most MDs are very uninformed on nutritional angles that assist healing.
My biggest complaint is the silence of MOs re fasting/ fasting mimicking. Fasting is medically validated and is a HUGE benefit for reducing SEs during chemo-- and it is FREE. As Keto is FREE. I understand that people may not be up for fasting or dietary changes, and that people with weight loss issues may simply need to eat more. Nonetheless it seems NUTS not to at least provide this info, and let people decide for themselves!!!
In my Onc Nurse meeting I was told to go ahead and eat whatever I wanted during chemo, and feel free to have a milkshake if that's what I wanted... That was 100% opposite advice from what the integrative MD had said: no sugar, low animal fat. But I am sure it's the advice most people get. I was able to keep my weight stable by eating a lot of healthy stuff during rebuild. I am about 10 lbs down from July, weight that I am happy to get rid of.
I have been on melatonin since my diagnosis... my naturopath has me on a high dose melatonin at bedtime (20 mg - you work up to it). Cold, 100% dark room for sleep was something I got from my consult w Dr Block back in Aug. This stuff ought to be well publicized and known about.
It is genuinely horrifying, however, to find out about contraindicated **drugs**-- because drugs are supposed to be in the Oncologist's wheelhouse.
0 -
Kelly-Anne—That’s fantastic! Congratulations! I’m so happy you got to ring that 🔔! 🎉🎉🎉🎉 I absolutely feel your pain, my mind has left me completely. I’m not sure if it’s been stress or chemo brain, probable combo of both, but I’m so slow. I’m ridiculously impaired. Being a type A person, it’s been humbling. I told my hubby I probably can’t go back to being a nurse. I think of trying to calculate a drip rate and I shutter. Sometimes I can’t even speak well. Can’t find my words.
Wanderweg—yes. Benadryl is on the ‘bad’ list with tamoxifen. That was shocking to me also but I was fixated on the Paxil at the time. My naturopathic dr did put me on Melatonin 20 mg at diagnosis. I had been on 5 mg at the time and quickly got to 20 mg.
Santabarbarian—I couldn’t agree with you more! Give me information and see if it helps me or gives me benefits. It’s awful that my oncologist just says it’s junk science and not to fast or even talk to me that others have felt better fasting. Real or placebo, if it works for me and makes me feel better than by all means I’m doing it! My oncologist also told me to eat anything and everything—milkshakes and ice cream, etc. so old school
To all of you wonderful ladies, I want to say thank you for your support and kind words. It helps me not feel so isolated. However, this ride sucks. I want off.
Still waiting to see if I can get my CMP results before Monday’s chemo. I did call the onc office on Friday to see if I could get the results but they had gone for the day. I never got a return call after I left a voicemail for the medical director on Thursday. Not surprised. I’m sure after listening to it he wasn’t not interested in calling back this scathingly pissed disgruntled patient.
0 -
I believe I have officially rounded the corner as of today. Dare I say I am now actually DONE done with chemo?? No nap so far, at 1 pm, and I got up at 6 am. I am taking it easy, chilling in bed, reading, and feeling pretty good.
I have been enjoying my kitties so much! They are adorable: wrestling, pouncing, chasing paper balls, leaping from place to place.... and when they are pooped they snuggle up to me and purr. They have utterly different personalities. One (Simone, w white face) is confident, clumsy, bossy, and affectionate. The other, Nadia is observant, shy, agile, and precise.
I think this site should put "get kittens" on the recommended list of chemo preparations!
0 -
Santabarbarian—My daughter would be all too happy if more cats were required for chemo preparations. I’m tickled that you actually feel that chemo is behind you. What an amazing feeling that must be.
SmilingDawn—yikes what a commute every week. I’m glad you found a provider that you trust. I never really liked my oncologist but figured I could stick it out—not now though. I find the Taxol so tiring. It gets worse every week but that’s my only SE. I would give real money for a nap. Since I started chemo I absolutely cannot take a nap.
My mind is shot. I can’t remember shit. I couldn’t remember if I have Taxol #8 or #9 tomorrow. That’s pathetic. It’s #9 thankfully. I hope they just spot check my WBCs and throw me in the chair and that I can avoid any physician interaction.
0 -
Hi all, finally exiting the fog of my #5 TCHP, day 11. Seems like every time has been different, I think I have it figured out on how to get through and WHAM, something changes. Most definitely more fatigued and nauseous this time. In bed for 4 days, and had to nap extensively on other days. Lost another couple lbs, down 15 now, but I’m sure I will gain back once I’m through with this damn chemo. Now I get a running nose and watery eyes day 11 through day 17. Also my eye sight is getting really bad and neuropathy is still bother8ng me. Will it ever end. I’m just hoping all will improve once I’m through with this.
I am hoping to have at least a week of good days before my final treatment.
Take care all, stay strong, we can beat this!
0 -
Maztac Congrates on finish another round of hell.
Round #6 kicked my butt, I was sick almost two weeks. I start the Herceptin only this Friday and still have appointment with surgeon and plastic surgeon on Wed. I will keep you posted. Surgery is on the 13th of this month. "very nervous about it." As for all my many bell ringers, I am so proud to be part of this group. We are stronger together! Thank you for all the help in getting me and others through this. Hughope1
0 -
Thinking of you Hughope -- positive thoughts and prayers for your anxiety to lessen for your surgery. I'm on day 6 of radiation today! So far no redness, swelling, or fatigue -- they say that comes this week. Nothing compared to chemo side effects though.
Congratulations to all of you that have rung the bell!! Hang in there those who have a bit to go.
0 -
MACTAZ—one more to go? That’s great! I’m am so tired of being tired. I wake up tired.
Hughope—you are an official bell ringer! Yeah! That’s fantastic. Congratulations 🎊🎉🎈
Cefinkc—glad the rads are treating you ok. How much of a break did they give you between chemo and starting rads? I haven’t started reading up on rads yet. I need to but just need to get these 4 Taxols behind me.
Getting ready for Taxol. Took some anti anxiety meds but my guts are sick and churning. I didn’t throw up so that’s a plus. I can’t believe I’m acting like a lunatic again. I was hoping my pukefest of last Sunday was a one off. Apparently not.
Hubby just texted me that everyone in his office is sick. Wtf! I told him to leave and not touch anything.
0 -
Hello MGJ — My last chemo was October 17, and first radiation was 11/26. I think they would have started me 11/19, but I was going out of town that week for Thanksgiving. Caro
0 -
Cefinkc—that sounds great. I could use a month off Between chemo and rads. I hope the rads stay good to you.
I heard that my dr was at the infusion center today. She never came to talk to me or anything. I was in such a better mood not looking at her. I asked the nurse for Ativan IV and she had to check with the dr who said ok to Ativan 0.5 mg IV. Weak. So weak.
Taxol #9 ✅ 3 more to go
0 -
MGJ-- I too wake up tired. Then I rest all day, and when I get up to procure food I get winded. BTW, Dip your husband in bleach before you let him in the house... But: 3 to go is VERY good news! You can do it and you will do it!! We have to be tougher than this shit disease!
Mactaz-- wonderful you are down to the last one!! Bravo to you!
Your August 2018 chemo sisters will be there for you both, and whoever else is winding up....
hughope-- yay for being done!!!! And I wish you the best for the surgeon.
cefinkc - so happy to hear your rads are starting off smoothly.
Is anyone here getting proton Rads?
PS -- may I recommend a great cat toy? It's a fishing pole w an elastic line and little clump of feathers hanging from it. I am lying here, binging "The Great British Baking Show" and holding the fishing pole at an angle with the feathers dangling above them... the kittens have been leaping spectacularly at it all day. Must have been invented by a very lazy person!! I love it!!!
0 -
It seems like ages ago but also just yesterday we all started here together. Look how far we've all come!
This last taxol beat me down. It's discoloured my nails, I lost the last of all my body hair and I am in constant pain. I did get my bastard of a port out today though! Yeahhh! Meet with the surgeon on Wednesday.
Santabarbarian: all my cat's toys have been eaten by my dogs! I'm glad you're enjoying your furry buddies.
My twelve year old daughter told me today that I'm the toughest person she knows. So sweet! I feel about as tough as butter!
Hang in gals! x
0 -
Kwilli, what a wonderful thing for your daughter! to say!! Sounds like a peach.
0 -
Santabarbarian - I didn’t do fasting during chemo (didn’t know anything about it and was concentrating on not losing weight), but I’ve been reading a lot about it to help prevent recurrence. I’m doing the sort of intermittent fasting where you don’t eat 14-16 hours everyday. It’s not as hard as I imagined, particularly if I can avoid eating dinner very late.
MGJ - I asked for Ativan in my first chemo and when I met with my MO before the second round he asked if the .5 mg was enough and added, “Because I could drug you into next Tuesday if you want!” I was loopy enough between the Ativan and the benedryl and had memory loss for the evenings of each round. Best of luck knocking out those last three taxols.
KWili - so sweet of your daughter! I can’t believe you’re already getting your port out - I’m jealous I got my MO to agree to February, but no sooner. But they were able to use my port for my IV when I had surgery last Thursday, so I guess that was a benefit
0 -
wanderweg.... it's amazing how easy it is to do the things we know up our odds of survival! I agree, an early dinner makes 13+ hours fasting per day pretty easy. And it really helps with our metabolic settings... lower glucose, triglicerides, etc.
0 -
KWilli—did you do DD Taxol? My memory sucks right now, I can’t remember if it was DD or weekly. My hair is going nuts on weekly Taxol. I have all of this long white hair all over my thighs— It’s rather gross. I also have a 12 yr old daughter. She’s been such a trooper. She offered me some of her bodacious boobs for a reconstruction, nice offer though. She’s an athlete so she is not a fan of her knockers. She loves taking pictures of my head with the iPhone (only in portrait mode—has to look artistic). It’s a great diary for recording hair growth.
Santabarbarian— I told my hubby I ordered a decontamination suite by the CDC. You know where you strip naked and they blast you with cold water from hoses? That one. Don’t make me use it. I love that cat toy. Even my old fat boy cat jumps for those flying feathers.
0 -
Urg. How do we explain that yes we rang the bell and received our last chemo infusion - that now we just have 3 weeks to go before we feel better. I hurt, I’m tired and food tastes like crap - and I keep getting congratulated for being done. I’m off to cover my head and sob for a while and wait for the bone aches to quiet.
Gentle hugs to you all...
0 -
Kelly-Anne - I wanted to scream when that happened to me. I felt so far from done because I knew I still had a round of bad side effects ahead (not to mention the long months of recovery that follow.) I tried explaining that to people and got a lot of push-back. It seems to make people defensive - like I'm just not grateful to be finished or something. I take it as one of those things you just can't understand unless you've been there.
0 -
MRI and Mammogram on Friday. News by Monday, or possibly before... Now I'm nervous!
0 -
Good luck SantaB, I will be keeping all fingers,, toes, eyes and even the few hairs on my head crossed for you.
0 -
Thank you Mactaz. I did just get a little boost: my head looked dirty and on closer inspection my hair is re-growing. Which makes me glad I did the caps even after not having done them on chemo 1, and losing most of it. Kinda nice to know that if I live, I'll have hair!
0 -
Kelly-Anne; I have been wondering about you. Sending you a nice warm hug.
Santabarbarian; good luck with your tests! Cool that your hair is coming back.
MGJ: DD Taxol. The last of the hair on my body is gone; I’m super smooth! I really hope my hair comes back. The last one was the worst.
I met with the surgeon today; who had to refer me back to my original surgeon as I’m not opting for reconstruction. Now I have to wait again. I really hope they get back to me soon. I still have a sizeable lump; I have no idea if it’s still cancer-y but I don’t want to find out via grow-back, you know?!
0 -
Kwilli sorry you have to wait. Why did surgeon have to refer you back to original surgeon, just because you opted against reconstruction, that just doesn’t sound reasonable to me. Don’t they understand how stressful all this waiting is on us.
Take care, hugs 🤗
0
