Calling all TNs

5AndCounting thanks for checking in, it's nice to see thrivers who take the time to let us know things are good. It's so wonderful you passed the 5 year mark. I agree those 5 years must have been hard.

I am now where you first were, awaiting my lumpectomy surgery next week, surgeon suggested over mx. Sometimes I have 2nd thoughts about getting the lumpectomy because I can't imagine after radiation getting a recurrence & having to go through chemo all over again. I was told the chance of that was only 6%, so I am always baffled when I read recurrence cases. Medical research is progressing and now there is this new TNBC prevention drug, Keytruda I think. MO mentioned she would prescribe it if pathology shows no ER+. I am also scared to go through any surgery because my body has been somewhat weakened by the chemo.

That said, may I ask how long it took for your hair to grow back? My last taxol was 8/20 and am still bald. I would think it takes 2 weeks for the last Taxol to hang out, one week for it to leave body, then a few weeks for hair cells to realize the drug is no longer affecting them. Rest of body hair (lashes, brows, etc.) is still gone too.

It is so nice to see all of you ladies here and congratulations on your good health.

Thanks, Serendipity. So glad your hair grew back early. It's interesting my grays never fell out.

MountainMia - Vent away!

I have something similar on my scar where my port was. Of course as of late, I freak out with every little bump/lump, hell, mosquito bite I find on any area of my body. The anxiety of not knowing that it's not a "bad thing" and the waiting is all so overwhelming; I'd rather know now then have to wait.

Praying it's nothing, which I'm sure it is!

I'm sorry you are going through this anxiety... and you are smart to share it. Hugs.

I'll add my well wishes, MountainMia. I hope your results are completely benign.

I'm just sitting here chuckling, though, as it occurred to me what weird things those of us who have had breast cancer wish for, since I was about to hope that what you found was either a big ol' lump of fat or an ugly chunk of missed sutures. Normal people don't wish for these things, do they?

Good luck.

Trish

Mia--just adding my best wishes to you for a good outcome. Hang in there, sweet one. I'm definitely "with you."

Oh my goodness, thanks, everyone. I KNOW you know how much it helps to just say it out loud! And yeah, Trish, we had to get weird, just to get through this!

So what's everyone been up to? Does anyone have GOOD news? Of any kind? What are you doing for fun? Have you spent good times with family or friends? Any travel? Milestones? Funny conversations or beautiful birds in the yard? What's up?

Trishyla,

It’s great that you have been able to pursue another love. I had about 11 months of chemo as well, and I agree with you that it’s hard to focus and write. I’m not a creative writer, but my work does require a lot of utilitarian writing. I’ve noticed that I have a really hard time concentrating on written work for any extended period of time. Work that usually took me an hour to finish, takes days now because I need to take constant breaks. It’s really frustrating because I have been able to do hours of gardening and yard work without a problem.

Mountainmia - one positive that happened this last week is that we have been able to harvest most of the grapes from our property. It’s a real relief every year when harvest time comes around, especially with all the fires these past few years

Hi! Hoping for fat like everyone else! Never thought I’d write that. Will we ever stop worrying?? On that note my oncologist just called about starting me on a chemo drug along with Keytruda. I’m TN left breast, early stage, tumors 6mm, sentinel node positive, double mastectomy before treatment. 8 rounds of chemo, AC and taxol. 25 radiation treatments. Finished 9/14! The drug that she suggested is call Xeloda. Anyone familiar with this? This is a trial as is the Keytruda since I’ve finished treatment and it’s usually given with chemo.

Thanks! Susan

1414 - I had 4 rounds of AC, 12 taxol with 3 Carbo, had a BMX in Sept 20 and started Xeloda for "precautionary measures" in Nov 20. Because my SE's were so bad I could only complete 3 of the 8 cycles. I was dx'd with a recurrence this past July. This morning I completed 12 of 25 rads and will be starting Xeloda again at the end of October. I'm praying that the SE's I had while on madame X last year was due to having it so soon after my last chemo infusion. I did not have the hand and foot issues though that most have. My MO felt that whatever it was that was going on with my body was not related to X, but I've met others on here who had simiiar experience as I did. I hope and pray that it goes smoothly for you as it does for many others!

NorCalS - I think I chatted with you last year while on madame X. I'm so happy that it was tolerable for you. I hope that my body can handle it this time around. I often wonder had I been able to complete my 8 cycles if the recurrence would have occurred. I was dx'd agin in July right after my exchange surgery, but the "blemish" was already physically visible on my skin in Feb. 21, about a month and half after my last dose.

Trish - that's awesome! Do you have a website or Etsy? Or do you just sell locally? I love the Hallmark movies, especially this time of year. That must've been fun writing for them. I can relate, I was a School Counselor prior to my dx and have been blessed to be able to not have to work, but I do some consulting and have struggled getting things on paper, like you, or someone else said, what would normally take me an hour to write up now takes me what seems like forever. I have such a hard time concentrating and it has me so frustrated.

Serendipity,

After I finished my Xeloda treatment, I learned that others were on a lower dose for a year instead of the high dose for 6 months. If you have problems with the dosage, you may want to ask your oncologist about the different length of time for Xeloda

NorCalS - The plan is to start me on 3000mg, she says that is low, but last year she started me on 3500mg, that was max for me, and went down from there. UGH!

Serendipity,

I was worried last year that my dosage was not high enough, but once I started Xeloda, I was glad that we didn’t start at the dosage originally planned. I think there is a difference with starting at 3000mg. I didn’t get severe side effects which allowed me to stay on Xeloda for 6 months. It did cause fatigue and I was so paranoid about hand and foot syndrome that I didn’t walk as much. That being said, it was much easier on my system than AC-T. I’ve been wondering whether I should have been on it longer since I would have started keytruda right after Xeloda if I had qualified for the trial. Is keytruda an option for you?

The plan was to start Xeloda after surgery, then have keytruda, then radiation. Well, my ANC did not cooperate and we had to make last minute changes and have radiation first, then Xeloda, then keytruda. I didn't qualify for keytruda, so after Xeloda was done, I was finished with treatment. So, I've been holding my breath ever since.

Mountainmia,

If your doctor can see you today or tomorrow, it may make sense to move up the appointment because if further tests need to be done, you may be able to get an earlier appointment for those tests. Uggh. I hope everything turns out ok