April 2015 Chemo Crew... Starting in April? Please join us!

#20: I am grateful for rain.

Went for a portogram today because my port has been nothing but problems. I got blood clots with excruciating pain and they always have trouble getting blood return. The catheter is too short so I need to go in a get a new port tomorrow so I can stay on track for Taxol 2 on Wed. Hopefully, this next port doesn't give me as many problems. I would like something to go right. At least I am not having too many SEs.

Hi Sunshine - So sorry to hear about the neuropathy. I have been lucky so far and had no neuropathy. I finished my AC and just one taxol.

If anyone is looking for a good netflix show. I like Unbreakable Kimmy Schmidt. Cause Females are strong as hell. She also says in one episode that anyone can do anything for 10 seconds so when times are hard just concentrate on making it through 10 seconds. Once you finish that then move onto the next 10 seconds. I live by that with the day rule with the cancer and treatment. I just think about making it through one day and then the next. I get depressed when I think I have 11 more Taxols, then surgery then radiation to go. When I think can I make it through this day, I think of course I can.

Anyone take anything for sinus/ear pressure while on chemo? I've had ear pressure since the last flight home and it's really starting to suck. Not painful, just annoying on top of ac round 4's utterly complete exhaustion and a rampage of mouth/throat discomfort. Both ears are also abnormally waxy. Anyone else?

Another Q...anyone also have taxotere and carboplatin after A/C? Just trying to figure out how my SE may change/improve/deteriorate. Can I hope for any improvement? Last chemo is still about 10 weeks away....the finish line is still so far away, but at least I'm equally as far from the starting point.

Are all of you who haven't had surgery yet as nervous/anxious as I am? I just want to get chemo finished and get on with the surgery so I don't have to keep seeing it on the horizon.

I am trying to take each day as it comes, but obviously, I am failing miserably...today.

Dizzparkmom, I notice weird ear issues as well, down to the earwax! Except, my earwax went away on AC and now is back for Taxol. Sometimes I take mucinex for ear pressure, but that's because my MO thinks its related to my throat and eustacean tubes being irritated from chemo and overproducing mucus. Gross, huh? Not sure about flying though..

Hi, just quick because we are going to get ice cream but I wanted to post because I know that a couple of you are going for T2 tomorrow - I had a reaction this time. I didn't last time, so they cut my pre-treatment steriods and Benedryl down to 25mg. They started infusing the Taxol, and first my stomach felt funny - cramping, then my chest started to get heavy and my face flushed, so they shut it down. Reaction stopped when they stopped. They gave me more Benedryl and steroids, waited 30 minutes, then started again and I was fine. Just wanted to pass that on - I guess it's common to have reaction for T1 or T2.

Lynne

Littleblue, I also am only getting AC+T for TN. What the....???.Seriously, I want the BEST treatment. I'm heading to the chemo bar tomorrow, so I will absolutely mention this to her. Your husband is gonna be gone for 21 days?

I like those songlists ladies.

Mel, hope your new port fares much better!

I bought some L-Glutamine tablets today at GNC. You ladies have been talking about the powder form....hope this is just as effective. How many mgs are y'all taking?

KSusan, good luck on your port removal, hope you heal fast. I'm curious what the downtime is for the removal. I know that having put in was a bitch!

Littleblueflowers, I have the same feelings about the treatment plan my MO prescribed to include carbo... constantly wondering why am I doing it this way when others are doing something else. I agreed to this treatment plan way back in April before I knew anything about what others were going to do and my MO made complete sense about why we would do each drug. Of course, he also doesn't have any problem with me traveling 1500 miles for treatment while everyone else looks at me like I have 4 heads. Anyway, I do trust him and feel confident about his plan, so I just try not to dwell on if I am doing the right thing.

Have you looked at the TN foundation website or blogs? I check it out every now and then, but mostly try to stick with this group...otherwise I get too lost in "Google anxiety world".

Ok, back and got caught up on all the posts, I am all jacked up on steroids, I'll have to take an atavan to get to sleep tonight.

Cherie, I am so sorry that you are still dealing with the abscess - that sounds nasty and painful.

Jen, I think you should talk to your MO about your concerns - if MO cannot explain to you why she (he?) chose the therapy course for you or doesn't know what your talking about, then you can start wondering, but I think they are all doing the best that they can with the knowledge that they have. I think 50% of it's hard core science, 30% is about your body and how it reacts, and 20% is a crap shoot. I know that's not very encouraging, but we know the outcome if we do nothing, right? So, this is the only thing we can do.

My numbers were crap today, I just made it to have chemo, they look for ANC to be 1.5, and I was 1.6. Also, WBC was down to 3 (vs. 14.6 before T#1), so I have to take the Neulasta shot tomorrow. Boo hoo. HGB is down to 9.8. It's funny, but I don't feel like it's any worse than ever, in fact, I've been feeling pretty good.

The other news I got is that I'll have to have my last 2 treatments at another facility. It's an additional 10 miles, which doesn't sound bad (especially when Heather is traveling 1500!), but the traffic to and from can make those 10 extra miles add an hour on to the commute. And, since I have to have someone drive me there and back, it's that much more to ask someone to do that nightmare commute - or worse, stay for the 4+ hours . . . why?? Well, I asked that, and my IN said that because I had a reaction, they'd want me to go to this other facility. But, I overheard someone else talking, and it sounds like maybe they are moving the cancer care to there (and leaving other infusions at current center??). I don't know but I plan to call and see if they can make an exception. I have a feeling, though, if MO is going to be in Waltham, I'll have to go to Waltham.

Thanks for the song suggestions - I did think about adding "Wonderful World" to the list, but I thought it might be a little too mellow for me. Not a fan of AC/DC, Linkin Park, or Katy Perry. I couldn't believe I forgot "Freewill" by Rush after I had posted it before! Also, "Good Riddance" by Green Day. I know some people like "Beautiful Day" by U2, but it doesn't do much for me. I'm finding that some of the songs are free from Amazon Prime! But Amazon doesn't have any Beatles music. I'm thinking of buying some CDs anyway, I'd like to have the Beatles collection- does anyone have a collection that they like?

KB - good choice for your song tomorrow! Congrats on being half way there. I hope all goes well for you tomorrow and counts are good.

Lynne

littleblue, one of my tumours was TN but my only chemo is 4 cycles of TC. That tumour did not have lymph node involvement though. My other tumour was ER and PR positive with lymph node involvement...maybe my regime is because the TN isn't as much of a threat as the other tumour? I just don't know...I have to trust that the oncologist knows his stuff. And I do have faith in him, the B.C. Cancer Agency is one of the best in Canada.

GingerChi, sorry about your stubborn abscess. Sometimes abscesses take a long time to clear up.

Re songs...What a Wonderful World by Louis Armstrong is a lovely song but it reminds me of when my dad was dying of melanoma. It was one of his favourite songs and we played it for him a lot in his last days. I can't hear it now without crying.

The rest of the songs y'all have mentioned are great! I am a Taylor Swift fan and a lot of her songs are about empowerment too.

Andre

hello, everyone!

I am part of the chemo crew starting in July, so I was hoping to find out all the secrets beforehand.

I saw your chat about the regimen for triple neg. I am triple neg and have already had the BMX. I will be following up with 4 treatments of AC spaced every two weeks and then 12 weekly doses of Taxotere and Carboplatin.

When I had my consult with the oncologist, he explained the usual regimens, but said that he was recommending adding the Carboplatin. He mentioned that there was a recently completed German study that indicated solid success for the quick growing triple neg tumors. Maybe someone has seen this study?

I am wondering if any of you have gone through the weekly treatment, and if you could share how that went. I am especially curious if you get any bounce back time during the week before you get hit with another dose.

Thanks for any info you might have.

I am also TN but just did TC. Taxotere and cytoxan. Maybe it has to do with tumor size and whether there was node involvement. I chose to do a lumpectomy after research and surgeon confirmed that lumpectomy + chemo + radiation = mastectomy. Plus I didn't have node involvement. The nurse at my preop kept questioning my choice as she thought it was not aggressive enough. Who knows what the answer to this evil puzzle is? I did receive the highest dose for all four infusions. I think I hit it aggressively ! Seems like even the number of radiation sessions differs too. I start tomorrow July 1st and will get 15 and 5 boosts directly at my incision.

Its weird, when they told me I had Triple Negative cancer, I specifically asked for the most aggressive treatment possible, not knowing anything about chemo regimes at the time. I figured chemo might kill me, but cancer definitely would! When I went to switch to Taxol, I asked the nurse for the hazmat sheet or whatever they print out for you, and she printed out the one for Taxol and the one for Carbo, and said they usually go together. I see a lot of people getting AC+T and a lot of people getting TC, but not too many getting AC + TC. This all just seems like witchcraft to me...I'm sure there are tons of factors involved in setting up a treatment plan, but its so frustrating to second guess treatment! I guess its good to know if this shit comes back they have lots of other treatments to try...

UGH just got back from Taxol - had a TERRIBLE reaction and they had to do the whole stop/start infusion :-( This totally sucks.