Calling all TNs

Definitely keep up the water. I had the opposite problem...I’d get home (hour and a half drive) and have to run for the bathroom within an hour. But only once. Still annoying. Also, do whatever you can to keep your muscle strength up. I walked every day, but by the end, I couldn’t even open a sealed jar, and had to lay down after showering because even that wore me out.

Hope it goes easily and quickly for you

Rebekah- how is the rib pain

thanks for all of the responses! Speaking of pre meds...my onc told me to take 20mg of dexamethasone 4 hours prior to treatment. I’m a bit nervous to take this as 4mg made me shake, although I did eventually get used to it and the side effects got better. 20mg just has me a bit nervous.

VL22- still having pain. Don’t know what to do. Have had chest CT, chest x-ray, abdominal CT and colonoscopy. All came back clean. I’m a little unsettled at not having a diagnosis. Will see my MO on Friday and will ask his thoughts.

Thanks for asking. :-)

R

hi! Today is my last ddac chemo. The tumor has shrunk a lot. I have the choice to do either taxol alone or taxol and carboplatin next. Any experience or opinions? I started with a 7.8cm tumor and 3 lymph nodes positive

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....

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!

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

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

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

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.

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.

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

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

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.