Calling all TNs
Comments
-
Hollywood, I did Taxol + Carbo and it was not bad at all. It didn't do anything for me, but I still am glad I tried it. I hear Carbo works best on BRCA+ patients, but I would still give it a try even if you are not. Just my opinion.
Rebekah
0 -
well, I had my first taxol infusion today. I haven't been able to keep my eyes open since. 20 min here and there. I feel fine as far as nausea goes. I don't have any. I'm wondering if my being so tired is from the taxol itself or the Benadryl I got as a pre Med. The minute the Benadryl was done infusing, I was out cold for my entire 3 hour treatment. They had to wake me! I may ask for no Benadryl if this iscaused from that. Anyone else have this experience? Back to my nap....
0 -
cccmc2 - I had the same experience with the sleepiness. I think it's the antihistamines. At my center we got 2 of them - benadryl and something else and yeah, they knocked me out the first day & I came home to sleep more. After that I started having a lot more caffeine in the morning before my treatment and a I sipped on a diet coke all through the treatment. Yeah aspartame is bad blah blah blah lol but it tasted so good & it was my weekly treat & it kept me awake.
Also when I started icing, the sleepy feeling didn't come on nearly as hard LOL0 -
I agree about benadryl thru infusion strong and I struggled staying awake. Hence i know it doesn't when I take oral for allergies. So I stopped them from doing as premed.. I take oral an hour to half hour prior to infusion.
Im glad that over all ur doing well thru 1st Taxol...
wishing everyone good vibes!
0 -
My wife is fighting triple negative BC. She was ER/PR+ but it turned. After 16 months on Xeloda it wasn't doing any good anymore. She's now on Halaven. Dr. Believes it will work as she has mets to her spine.
Where our computer is I look out the window and see the big blue sky, all pure and clean. Suddenly I'm washed over with a feeling of fear and dread. What will I do, how will I live if she should be taken? I sink to a low place of fear and cry. Sorry I'm not always a tower of strength, sometimes I collapse into sorrow. Damn this disease!
MikeW.
0 -
Mike-
You are right, damn this disease! I will be thinking of you and your wife and will say a prayer that Halaven works for her. I hope we can all hang on long enough that an effective treatment is discovered.
Rebeka
0 -
Mike, keep the Faith and Hope .. we never know what tomorrow will bring.God bless your wife and you.
Sending positive vibes to you and ur family..
0 -
Mike vent all you wish. We feel the dread with you. This disease takes us places we never thought possible. Praying Halevan works to slow this disease down.
Val
0 -
other than bone pain, did anyone have pelvic possibly ovarian pains after taxol? I have had pelvic type pain all day today. It's 3 days past my first taxol treatment. Don't remember being warned about it. Just curious.
0 -
cccmc2 - I have read on some threads women who have had pelvic pain on taxol. It’s one of those “unusual “ SEs - there seems to be a long list of those! The ones that many MO’s will insist aren’t due to the chemo, which drives me crazy- like, then what is it??
I had so much muscle and bone pain with taxol in strange places it was really tiring. Hope you feel better soon.
Mike - you’re in my thoughts - this disease can be crushing. Please don’t be hard on yourself - we all understand
0 -
thanks ladies
0 -
cccmc2
I had what felt like REALLY bad menstrual cramps after several of my weekly Taxols. A heating pad helped tons. I als took Tylenol and with MO approval ibuprofen if needed. I also had muscle cramps in other places, too (calves, pecs, etc.) in some cycles. The pelvic pain only lasted for the first few cycles for me.
0 -
CallieGirl,
Thank you. I will try the heating pad
0 -
Hollywood, I would throw everything at it that I could since you had positive nodes.
RDeesides, couldn’t your rib pain be residual from rads? I can’t remember what you’ve said about previously.
I let my MO know that I don’t tolerate Benadryl well, so I only had to have it for my first taxol. I still ended up being classified as allergic to taxol, because I broke out in hives a month into it, it flared up my lupus rash, and I had nightly fevers for the duration. They switched me to abraxane, which is paclitaxel mixed in a different solution, but it didn’t change anything.
Mike3121, big hugs to you and your wife. I’m surprised her tumor/s are grade 1. I thought all TN tumors were grade 3. Keep us posted, I’m sure they have other drugs to use.
0 -
LoveMyVizsla
I'm not sure what grade though they act like grade 1. Her Dr. said my wife's cancer is 3% ER/PR+. Besides all the estrogen blockers failed her rather quickly. At one point she had 3 types of BC at once. An ER/PR+ grade 1, 100% estrogen in her breast, inside that tumor was an ER/PR+ grade 3, 30% estrogen and in 9 lymph notes was triple negative metaplastic BC.
Thanks to all you ladies. I get depressed by all this. Besides, I have my own demons to fight both physical and mental as I'm a combat wounded Vietnam vet with PTSD.
MikeW
0 -
LovemyVizsla, my rib pain can't be from rads because it's on the non BC side and I didn't have rads there.
I saw my MO on Friday and for the first time he seems genuinely concerned but also a bit baffled because we have run CT scans and xrays and such and those have revealed nothing. We are running a Guardant 360 blood test and will run one every 6 months just to monitor if anything unusual pops up. He is also ordering a bone density test. He said maybe the pain is lingering side effects from all the chemo. It can be damaging to our bones, particularly if we are menopausal. So, we'll see....
R
0 -
Rebekah- I wouldn’t be surprised if it is still the after effects of chemo. I had unusual SEs throughout and still have some. As my father likes to say “ They poisoned you! Of course things can get out of whack!”
I’m glad your Dr is taking it seriously and not being dismissive. Wouldn’t it be great to just feel normal again??
0 -
Vl22, I seriously hope you are right. On the downside, Guardant just called me at want to charge me 2800 for this test. Considering dr wants to run it every 6 months, I don't know how I will manage that. I am applying for financial assistance through some program Guardant has. Cross your fingers they give me a really good deal. I got Foundation One to give me a free test. Hopefully Guardant will do the same or really cheap. Ugh. I am losing my job in a few months and am getting pretty worried.
R
0 -
Yes! I would love to feel normal again! I got sick today with a short-lived gastrointestinal thing. Of course my mind goes to my friend that passed last year from stomach cancer.
Hang in there Mike.
I’ll have to look up that’s blood test, R. Hope the findings are normal.
0 -
Just had follow up mammogram and all was good. Didn't even realize I was holding my breath.
My BS, who is awesome , was like" good to see you, but glad I can't be of service - see you in 6 months".
Does anyone else feel like you're in a hurdle race and each one you clear you get more hopeful, but then make sure not too hopeful?
Do t get me wrong - I'm living my life and loving it, but I'm still looking forward to not feeling like I have one more hurdle to clear.
Hope everyone is in a good place.
0 -
VL22,
Yay for good mammograms results!!
Yes, I feel the same way. It's weird, but I was probably LESS worried while in treatment than I am now. Maybe because it all happened so fast, and was too busy with appts and such to think about it? Also, the further down the path, the more educated we become. I didn't realize (at first) this isn't like an infection that is cleared up and forgotten. We will always be nervous every time we are due for testing, and every ache or unusual feeling puts me on alert.
Like you, I am living and loving my life now, and expecting the best...but the innocence is gone.
Vickki
0 -
Yay VL22, congrats on the clear mammo!
I'm not even finished treatment and my other breast routine mammo came back suspicious so I had to have a biopsy today. Ugh. The scan stress is real. Now I wait for pathology results.0 -
Moth,
Sending positive thoughts your way!
Vickki
0 -
Yeah. I feel the same way when I have to have another test done. There's a reason it's called "scanxiety".
Congrats on the clear scans.
0 -
moth - that truly sucks. You’re in my thoughts - I had a “suspicious “ find right before my surgery and had a biopsy - turned out to be a benign swollen node. I hope you get good news soon.
0 -
Moth,
I hope it's nothing. Hopefully they are being extra cautious.
Rebekah
0 -
Hi everyone ~ I haven’t posted on this thread in a while but I do try to get on here and read up on how everyone’s doing.
VL22, so happy you had a clear mammogram. Congrats!!! I took my last dose of Xeloda last night so now I see my RO tomorrow and find out when I will be starting radiation.
Moth, you’re in my thoughts. Hoping for good news.
0 -
VL22- Congratulations
Kmajor- Happy to hear you finished chemo
Moth- I hope everything works out.
Take care everyone.
0 -
Moth, so sorry I'm sending u postive vibes and ur in my thoughts as u wait for answers again..
0 -
Sending positive vibes to all with scans coming up. Yes i feel more anxious at times now almost three years out (in November) than i did while in treatment.
Cancer is a partner we did not choose and can't divorce.
0
