January 2012 chemo

NancyHB,

All the best to you on this upcoming Thursday. My MO gave me some lidocaine cream to put on the port an hour before. The infusion nurse said, "oh that doesnt work, you should get Emla. Your doctor has to RX it.". Either way, accessing the port really didn't hurt and I was a nervous wreck about it!

Yolanda and grateful33-I'm sorry to know of your diagnosis. You will find comfort here. You will find truth here and mostly questions are answered based on individual experiences.

Grateful33-good luck tomorrow. Take an Ativan or Xanax or something if you have it. It will help you relax. I'm certain you'll make it through.

Yolanda-glad to know you're almost halfway. I'll be with you on the 24th for my second AC of 4. Then taxol x4 then herceptin for a year. Radiation is in my future too. I hope you have a pleasant week leading up to your next treatment.

Today is day 14 of my first tx with TC. I have had min SE but I took my zofran for 5 day every 8 hours, no nausea. The claritin worked for the bone pain except one day whem I forgot to take the claritin, that was day 5. I have worked full time only missing the day of my tx. I work in a primary care VA clinic the other staff have been great. I have fibromyalgia so going to work keeps me going,I do not feel any worse there than at home. One of the Dr was an OC and my nurse manager was a chemo nurse in the Navy. She made sure I stayed away from direct pt care on my low WBC days. My first cbc was real low, had to go on a neutropenia diet. I know I have posted some most of this before but thought I would try to put the first 2 weeks together. The worst has been the sore mouth and thrush, my OC gave me a rx for mircle mouth wash it has nystatin worked right away. My taste left on day 3 everything tasted like ashes, but found a tip somewhere to eat a dill pickle first. it
worked took the ash taste away still had no taste but at least not bad.We have 2 BC survivors at
work So the support has been great.I am blessed with a special DH. I feel so bad for the ones going thru this alone or with someone that is not supportive, makes me want to gather you all up and bring you to my house. Fldreaming when you get better and can travel contact me I live in ga
but have a beach house in St Augustine Hey! Idea when this is over we can all do a BC girls
weekend at the beach maybe we can make that happen. I would love to meet you all. house will
sleep bout 22. Could work ya know. I have so many friends that call the house the healing place.
reading all your post has made all this so much easier, it helps to know what to expect next.

end of the ramble but today I feel almost normal again (WBC back up)

Hi Deb267,

I grew up in Florida (West coast) and vacationed in St. Augustine 2-3 times a year. Now live in Southern Maine and freezing most of the time. Beautiful place to have a beach house.

Since you are day 14  and ahead of me a few days. How is your hair? Mine is starting to feel like it's pulling, like a pony tail pulled too tight. But nothing is coming out yet. Anyone else?

Momof2inME it was hanging in there until last nite after I washed it sm amt was coming out, one spot area bout size of penny came out, everywhere else feels pretty secure only one area felt sensitive. I had it cut real short about 3 weeks ago.

Hi Ladies, Hope everyone is doing well.

Yolanda, Sorry you have to join us again but so glad to hear you have your humor and faith supporting you, and know that you have all of us too.  I did have the experience you describe of literally feeling my tumor "melt away" on TCH.  It really was unbelievable and a real psychological boost going into subsequent treatments. 

I joined this group since I am re-starting chemo after a break.  My hair has started to grow back but on my first TCH round, I had initially lost it right around day 17 as other people on the board had predicted. I know several people who have shaved their heads. I just cut mine short and let it fall out on its own. I buzzed what was left a month or so later. I had been warned not to shave it because of irritation or follicle inflammation/infection. I don't know if this is a real concern or not.

 Grateful- good luck tomorrow! Hope the day is uneventful and side effects are minimal.

Nancy- I have yet to have pain with the port access and have probably had it accessed at least 10 times between chemo and fluid infusions.  The port itself was sore for a while, but I have yet to fell any discomfort with the needle stick.  However, I was recently given an Rx by one of the chemo nurses that was surprised I didn't have Emla, and she told me others swear by it and to try it if I ever started to feel any sensitivity. I find the regular blood draws and finger sticks way more painful than the port.

Since I'm further along than many of you, I figured I'd outline my hair experience, which some of you are just getting to.

I noticed funky things with my hair about 12 days after my first tx - someone described it as like when you pull your hair too tightly into a ponytail, and that was pretty accurate. About 14 days out, I noticed one strand would come out every time I ran my hands through my hair (which soon became every 15 minutes...). Over the next few days, that kept increasing. I started wearing a night cap to reduce the amount my hair was rubbing on the pillow. Since New Years was coming up, I held off on washing my hair and took it really easy. It made it. I have very, very thick hair, but by Day 21, my hairline was visibly receding and thin.

I had my hairdresser come in on Day 22 (my tx day was changed so I had two extra days between tx's). She couldn't get herself to shave my head 'just in case it doesn't all fall out,' so she gave me a pixie/buzz. By the first time I put a buff on that night and took it off, what little bangs she tried to leave me were gone.

That was almost 2 weeks ago. I now have patches of hair left, and a number of bald spots. I don't have a razor of my own, do I figure I'll just let it go on its own. I've been wearing my wig, my buff and a few other turban-like things. The real down side is I can't quite wear a scarf because I'm not completely bald yet, so it might be more upsetting to others (and me) than just seeing a bald head underneath. I haven't had a lot of itching, though some women had problems with that and rashes.

I actually have come to like the way I look. If nothing else, I've decided that I definitely will go red someday now that I've tried the wig. I'd rather not have to go through it, but I like my face, and I've been wearing long, dangling earrings every day to look really good. I actually felt good today at my PT appointment - I was facing the mirror while doing some arm weight exercises, and decided for a BC survivor, I look pretty darn good. And I smiled.

Losing hair is emotionally jarring, but as they say, our beauty is what's inside, and if we roll with it, we can bring it out from inside and make it shine. Hang in there.

Momof3 - You've got a great young man. I'm sure he and your other boys will help you get through this. I've had my moments as well. I hate washing my hair... I know there will be even less when I get out.

I have a shaved head decided that losing my hair when I decided (not when chemo decided) was the only thing I could control, so I first got a short cut then after the first chemo I had my niece shave it. Just recently razor shaved it and I have a nice shaped head ...lol. I am not doing wigs but I use head coverings or wraps. I wore those before treatment so they are comfortable for me. I chose to shave my head because it would have driven me crazy to see it come out slowly. When I had the short cut and it started coming out it was more tramitizing than the bald cut.



Sometimes I pull my head covering off just for the shock value....

Actually, I shaved for New Years, and there's very little coming back. Someone suggested that a lot depends on where you are in the hair growing cycle. Not sure if that applies to the hair not on your head. And while most of the hair on my head pulls out with little coaxing, the hair down near my neck and in front of my ears seems to be secure, which is sort of nice when I where a hat. I just hope I don't need to keep shaving the back of my neck while the rest of my head is bald - that's one of the annoying things when I get my hair cut really short.

ely: no I didn't know the 12x Taxol to start with. That has come about through me asking about it after I read the research. I figure better PGFS and less SEs (potentially) sounds good.



Jenn

Thank you all for the advice on the Claritin and the port access.  Honestly, I will be glad when tomorrow comes (and goes) and I can say I'm finally on my road to recovery.  I'm tired of waiting, wondering, and worrying.

Would anyone be adverse to having one post that lists our treatment plans?  I thought it might be helpful for us, and others who continue to join our thread, if we have questions or want further information.  I thought I'd start one with what information I can discern from previous posts, but only if you don't mind.  I thought I'd include our screen names, the date of our first treatment (if I can find it), our treatment plans, and behind that our stage/grade/receptor status.  Something like this:

NancyHB: 1/19/12, dd 4 x AC, dd 6 x Taxol (S1 G2 ER+/PR-, HER2-)

I can continue to edit the message as new members join.  

What do you think?

Nancy - I just wanted to chime in another post about the cream and Claritin to add to what Rachelvk said.  I use the Emla cream also.  The first time it worked like a charm, I felt nothing.  The second time I forgot to put it on until about 30 minutes before my tx and even though they also used freeze spray, I did feel it.  It wasn't awful though, just a pinch.  Make sure if you use the cream you put it on 45 min to an hour before treatment, slather it on good and cover it with plastic wrap so it doesn't rub off on your clothes.  Honestly, anticipation of that first treatment is WAY worse than the actual treatment.  It's really not a bad day.

I was told to take the 24 hour Claritin (not Claritin D) for the Neulasta shot.  The first shot is the worst as the initial bone marrow expansion is where the pain comes from.  It was manageable with Tylenol.  My second shot I didn't have the bone pain and actually forgot to take my Claritin day 2 and 3.

Good luck to all you ladies starting out this week!  Big hugs and wishes for minimal SE's.

Hi Girls!

 Someone posted one year later on my January 2011 board and I wanted to do the same today for you guys.
A year ago today I had my first chemo.

STAY STRONG LADIES! It will get better. But it's definitely HELL going through.

Here's where I am a year later:
We went to Disney World with our 2 young sons in Sept 2011 (first real time without a scarf!)
I got promoted at work.
I'm training for the Komen 5K.

I have a very deep appreciation for life and the pursuit of happiness.

The girls on this board are extremely valuable source of info. Stay strong, and feel free to PM me if you have specific questions!

Nancy HB that is a good idea.  Although perhaps easier would be if everyone put their treatment plan in their signature? (I just did)

Peggy 

Wow I just read the last 4 pages I missed and am on overload!!

It is 14 days for me now and I also have the Tight-pony tail feeling..I have been washing it everyday since the bone pain left and nothing in the drain yet.

NancyHB~I like your new scroll, since I forget everyone's Chemo Reg. awesome idea!!
My Oncotype was 19 a lot lower than your 42 and we are on the same Reg., there was no harder option offered to me, but I also had Perineural invasion and there were too many GREY area for us. You'll do great tomorrow..My AC felt cold half way up the arm, I was told that is normal..the nurse used disposable heating pads below and on top of my arm to make it more comfortable, it worked, I am Port free.

Gratefull33~You'll do good tomorrow too. I accepted the Ativan they offered, not sure if I'll need that tomorrow for my 2nd...I was so wound up before my 1st and it was a breeze for me, but I slept really good that first night from the Ativan infusion they gave me.

Ely~I am also going on Taxol x12 after my ACx4, for me it is to carefully monitor the SE's, but by the end of the 12wks I will have the same dose as the Tx4 people. My MO and I are very concerned with the Neuropathy SE...loosing any fine motor skills would be worse than the 2 boobs I already lost.

Rachelvk~I also had to add Neosporin to my gloves (fixed the damage in one day) I couldn't even open the shampoo bottle...I was washing my hands TOO much, their still sensitive, but no longer threatening to bleed.

Hotlynn~on the 7th day I received canker sores on my tongue-which was also swollen-and mouth sores where my teeth would rub my lips, I tried the teaspoon of Olive Oil remedy (I saw on this board) figured I had nothing to loose...It worked!! I tried it one evening and the next day there was a marked improvement...now I use it once in the morning and again before bed, if I remember. I just rinse it around really well and spit it out. I am still using the soda/salt/warm water after every meal I was so bad the Lettuce felt like razor blades. I can even heat potato chips again.

Sorry I wrote a book again...Barb PCBarbie66(Pine Cone not a personal computer)

PCBarbie66: 01/05/2012 dd 4xAC, dd 12xToxal (S2 G1 ER+/PR+, HER2-)