Starting Chemo October 2014

Eleanor, I have an Oncotype score of 23, and I am relatively young (48). What tipped me over the edge toward chemo was that I had a positive lymph node, otherwise they wouldn't have recommended it for me. I know I couldn't live with myself if I has a recurrence or Mets and I didn't do absolutely everything to prevent it. I've had one infusion so far (next one on Friday).and so far SEs are manageable. If you decide SEs are too much after starting chemo, you can always stop. Good luck with your decision.

Becca - you make me laugh!  I hope you find your taste buds soon.  Mine must be with yours.  Hopefully they are having fun and will make their way back before Thanksgiving!

Is anyone else having neck/shoulder muscle pain associated with their port/catheter?  I had mine inserted on 10/13 and have two chemo infusions since.  After each chemo, I have noticed that I have a stiff neck (kind of like I slept on it wrong except 10x worse).  It hurts into my shoulder muscle and under the arm.  This time has been worse than last.  I also tend to get a headache toward the end of the day.  Maybe it is from the catheter inserted into the jugular?  All I know is it hurts and makes it very hard to get comfortable or to sleep.

I called my BS and she said that maybe I am overcompensating for it being in there without knowing it.  She said to notice how I hold my head and go from there.  I don't know that I am holding my head any differently.

I don't want to take any OTC pain med or the good pain meds because I don't want it to throw my liver enzymes out of whack.  I called my MO to see what he suggests I take.

I will try a heat pad or a rice pack this evening and see if that helps.

Thanks ladies!  I hope everyone is doing well.

I am mid treatment. Happy to report my labs looked great. MO was very pleased. He also reduced the steroids to 5mg from 10 based on the side effects I had. Really hoping it helps. Other than the harpoon going into my port it's been a stress free treaement. The Emla cream does nothing for me. Since my WBC are high I was hoping to avoid Nuelasta. No such luck.

Started the day with a fill at the PS. I'm now at 430ccs. I have cleavage!

hi all,

Hi all. I was in September thread. Two rounds of taxotere/cytoxen. Had horrible burn and last week started 12 weeks od taxol.

I shared with Cherishe there is a "bean" that grows on a bush called Magic bean....google it. A good friend of mine who is with our Sheriffs Office brought me a few frozen. A TINY bite helps a lot of people FIND those missing taste buds!!

She grows and shares with friends on chemo....yes, legal .

Thanks for the laughs this morning. Becca my energy eloped today with your buds !

Hugs and blessings you warriors!

Becca you are hilarious!!! That hit it on the head. 3 down 3 to go! Had the third round today with the only issue being trying to get my veins to stop rolling around... 3 sticks.): The nurse that did so well the 2nd round did get it in the vein. She knew she was going to need to keep it from rolling (I used to be a phlebotomist). Still no SEs, except for that pesky mouth sore, but no nausea. My center has got the nausea meds down pat. I haven't seen but one person get nauseous and that was when she got up to leave. I have the Duke's Mouthwash, but I truly believe the warm water, salt, baking soda rinses work better. The sore is still there, but it's not a big deal.

Back for the Neulasta shot tomorrow. Booklady this will be my 3rd shot and I haven't had problems with the first 2. Hope I don't with this one. Take the pain meds when you need to. You need the rest. Hang in there!

I generally work on Thursday and Friday after I get chemo on Wed. The steroids have me up anyway, and I'm usually just fine. Sat. and Sun. I start to crash out (except the Sun. I was at Martinsville and Jr won the race for me (: ). Monday I'm off and by Tuesday I can usually go on to work. It's getting back into my regular exercise routine that's been hard. I'm a group exerciser and I love Zumba. I was doing 4 classes a week with 2 different instructors. I went back to one last week and was able to keep up. I even felt like I got a good workout. I plan to go to a class tomorrow, but it's the more intense class. I hate wearing a sports bra and my surgeon took such a small area out I'm still pretty busty. I hate for the girls to be bouncing all over the place. Can ya'll see this picture? Let me make it more descriptive...a 200 pound bald woman in yoga pants doing salsa, and all the other routines with bouncing boobies. I never could do any streaking I would have given myself a couple of black eyes!!!!

Hugs Ya'll

Speedcat - taking your advice with pain killers and rest tonight. Thanks, Zumba Queen!

armamp95 - even with two hands my scarf tying is a hot mess! I keep playing with scarves, caps, my wig - bald feels best, but I'll keep playing. Good luck having crafty friends and making the pre-tied scarves!

Everyone - thanks for sharing on this thread! I've been hit with SE's and dizzy, weak, fog is lifting. Same with constant back pain from Neurlasta.Just reading what's up with y'all has kept me going. Hope everyone has a peaceful night. Linda

Glad my Taste bud APB made some of you laugh, figure we may as well make the best of a bad situation.

Linda, Nuelasta is a wicked little devil, yes? My second injection caused more intense bone pain than the first. If you need something a little stronger to get you over the hump, I say go for it. My motto these days - no need to suffer with all the good remedies out there. Boy is that a change for me, I've birthed 6 babies without the help of any pain medicines. I wanted to do it the natural way, the right way. I look back, shake my head and say what a fool.

speedcat, your visual aid is cracking me up! I have to hand it to you for trying to stay active. Go give 'em hell at Zumba class.

ilovecoasters! cleavage!!! way to go!!!

Cherice, hoping you find 'hairless' liberating. There is an upside to bald, much less time showering. no time wasted prepping hair that will immediately be mussed up by the wind/rain, no hairspray on wall behind hair prep area, no hair on floor of hair prep area.

Mandy, what did your MO say about pain control and liver enzymes? Hoping he thinks an occasional dose is OK, walking around not using your painful head/neck muscles is gonna be a bear.

Thanks, Kath, for the tip on Magic Berry. I did some research and found it changes everything to a sweet flavor; lemons, Tabasco sauce etc. all taste sweet. I want pizza to taste like pizza! A greasy burger to taste like a greasy burger! My sweet taste buds have so graciously agreed to hang around sometimes, I can still taste sweats to some degree. Sigh, guess I'll just have to be patient and remember, this too shall pass. I suppose it could be worse, everything could taste awful vs. tasting nothing at all.

Alright, well I better get this day started, I've got some hell to give to this November the 13th! Chins up everyone, one foot in front of the other, let's put this day behind us. Hoping your day is a good one!

Well...I have an answer to my neck and now underarm pain - BLOOD CLOTS!  I called my MO first thing this morning and he sent me for a PVL which showed a clot in the jugular and a clot under the arm.  Praise the Lord they were found!

I am waiting for his office to call me back to let me know what happens next!

They think it happened after my last chemo treatment.  It wasn't the normal nurse, and she was not able to get blood flow from the port.  She said it was okay, but I'm guessing maybe it wasn't.

I am just relieved to know that I wasn't crazy since my BS had me thinking I was and that it will be taken care of.

I go this afternoon to start Lovenox.

armamp, I just don't like tying the scarves and they slip. I ordered some chemo beanies from Cure Diva. They have all kinds of patterns and colors and materials. Some have ruffles and some just a fabric. There's an elastic band across the base of thwe skull that keeps it postioned and the fabric gathers in a cute little ruffle at the back. I love them! I did find that the black one was made of such airy material my very white bald head was showing through. I bought one of those black skull caps like the black football players wear under their helmets.

Back for the neulasta shot today. See how I wake up tomorrow. I'm praying I don't have pain that's not manageable, but I still have pain meds from the surgery. I believe I will take as needed. Should do better now with the constipation under control. My appetite is already gone so I don't really eat that much. Bummer is when it comes back I want to eat anything I can get my hands on.

Time to go. ECU is playing...GO PIRATES!!!! ARRRRGGGHHH!

Leto,

That looks so uncomfortable. Thanks to my tissue expanders sitting high, my port is not visible at all. You can just see the scar from the incision. Hope you are feeling ok after you treatment. The only side effect I had today was heartburn and hiccups. I feel amazing compared to lasttime. Neulastais in the morning.

Anyone out there er/pr/her2 positive? How many tests did it take to get a true her2 number and if I may ask what was the number? Just getting started with all of this and getting more nervous as the days pass. Thanks shuf

On my way in for treatment 2 of 4. I'm feeling really good, sorry to have to go back to square one. At least now I'm prepared for what is to come. Lots of friends texting to wish me luck, I'm really appreciating my friends and co-workers Getting lots of compliments on my "new haircut" at work, lol. Wish me luck ladies!

Nancy6540 - I'm curious - how did they find the blood clots?

Leto, mine also was found with ultrasound when I presented with a swollen painful neck. Sloan Kettering had the ultrasound right there in their facility. In the hospital the vascular surgeon said I would be put on Coumadin but the MO said they no longer use Coumadin at Sloan with chemo. They found that with Xarelto you don't have to be "watched" as closely and there are no dietary restrictions. She said about a month past my chemo I could stop taking the Xarelto without bad side effects so it would not be a lifelong pill.

I would ask for an ultrasound on your neck. The x-Ray showed the tube but I'm not sure you could see a clot that way! My neck looked just like yours!