Sept 2012 chemo

Jojo u are so right ...i am scare and angry...until some of us can get through our first treatment then i think that will go away......i will get me results from my PET scan tomorrow so FINALLY get this beast off me with chemo...im just so ready to fight and ready for whatever....staying positive is very important!!!!!!!!!! 

Hi everyone,

  It is 2:30 am, PST - and I completely can't sleep.  Could be the anticipation for tomorrow's first treatment.  Thanks Melrosemelrose for all of the information!  Sherrie, your journey is looking a lot like mine.  I also had the port put in on Thursday and will start tomorrow.  My port is a bruised hot mess- so I am not sure if they will be able to use it either.  I am on Taxotere and Carboplatin (I thought it was going to be Cytoxan, but just found out today that it isn't)  I will also be taking Trastuzmab and getting the neulasta shot the following day.

  I totally get angry and sad too.  Right now, I am feeling more anxious to get started.  I am trying to hold a mindset around chemotherapy as healing- and that this medicine has to be powerful to help me stick around to see my little ones grow up.  It is all totally scary - but I know that I will be okay.  We will all fight this thing and come out the other side knowing so much more about ourselves than we ever imagined.   Right now, I just wish I could go to sleep! 

Sending lots of healing energy to everyone:-)

Hello everyone--just thought I'd stop in and say hello!  Going for my 3rd round of FEC tomorrow..then on to 3 rounds of Taxotere.  Just as I've got used to feeling mostly normal again, dreading going back to feeling crummy again.  Still, after tomorrow, I'll be able to think that I'm half way through.  Yay! I had really bad cases of oral thrush after the first two FEC, despite all the prescription meds, mouthwashes, constant toothbrushing etc.  Has anyone else had this problem?  Does sucking ice during the treatment work?

 All good wishes to everyone else out there going through this journey.

Hi JoJo2373... Yes I was/is extremely achy all a over especially in my lower body. Now my skin is very sore to the touch. I am taking the Claritin everyday but not sure if it's doing anything.

Sherbab--thanks for your response about the underarm issues.  I had my surgery in July and had the normal issues for a few weeks afterwards and then everything was fine until about a week ago when the scar line became a bit bumpy in places with a more prominent area towards one end.  The nurse said today that she thought it was scar tissue but they will keep an eye on it and the onc will look at it when I see him next week.

My skin has felt really sore and sensitive for a few days after each chomo treatment too.

I started losing my hair really badly at around day 16.  I'd already got it cut really short, about an inch long, and had started wearing my wig (which I love, similar but much nicer than my real hairstyle!).  When it started falling out alot and clogged the shower drain, my husband just gave me a buzz cut all over.  It was a really surreal experience for both of us!

Regarding triple negative, I am ER/PR/Her2 negative and stupidly maybe I read everything I could on the Internet as soon as I was diagnosed and got myself scared senseless.  Most of the articles written on this--and there are many--paint a really gloomy picture for us TNBCers.  But, even though it's true that the survival stats over the first five years tend to be lower for TNBC, after that liklihood of recurrence is the same or less than ER/PR+ cancers.  And even though the overall outcomes might not be as good as hormonal receptive positive BC, the stats are still generally pretty good if you look at it in a glass half full type of way.  My doctor told me that tumour size and number of lymph nodes involved is still really important for TNBC, so if you do find out this is what you have, you'd have good reason to feel hopeful!  I've found the forums on this site to be helpful on the subject, as well as the "positives about negative" blog.

@sherbad Your diagnosis sounds very similar to mine. stage 1 triple negative. I agree with @EnglishRose. Don't read the stuff on the Internet about triple negative. What she said was true. Statistically even though it tends to be more aggressive and more likely to come back my doc said that's more likely to happen in later stages. In early stages (stage 1 and 2) my MO says that this is curable...yes I said curable. And my MO (you can google him Dr. Nicholas Robert Fairfax VA) is rated by US News and World Report as top 1% in the country, so I believe him. He said early detection is the key, but even if it's later stages triple negative cancers actually respond better than hormone receptive cancers to chemo and again after 5 years we are all the same. All reasons in my opinion to be positive about our negative. Good luck sweetheart.

To all those who recently had ports put in and are starting chemo:

Ask you MO for a prescription for numbing creme (i think its called emla, but its a lidocaine based creme--they will know what you are asking for.)  You put it on between a half an hour and an hour or so before the port is used.  If you can't get the prescription filled before you have your first infusion, ask the nurses at the infusion center to find some and use it on you. Mine had some in stock and then ask them to delay using the port till it takes effect.  My infusion center also used a freezing spray on the area and the initial stick wasn't bad at all (and I'm a huge chicken when it comes to needles.)  I would also advise not looking when they insert it!!

Keep in mind that they can also draw your blood from the port, so having a port will save you all those annoying blood sticks.  Just ask them to coordinate the blood work with the days you have your infusions! 

Be careful applying the creme.  You can't use your hands, because your fingers will become numb!  Glop some on some plastic wrap and then simply stick the plastic wrap onto the port area.  It will stay on, and will keep the area clean till you get to the infusion center. 

This really works!

I would also advise taking some form of anti anxiety medication (like adivan or xanax) before you go.  It really takes the edge off a very stressful situation.  When I told the infusion nurse that I had taken xanax, she said, "candidly, I wish all our patients would take some!  If ever somebody had a right to be anxious, its a cancer patient undergoing chemo! That's what the medication is there for!!! 

Tomorrow, I go for my 2nd infusion---this time herceptin only. 

Good luck to all those starting!

Cheryl 

I asked my nurse about icing head and nails. Here was her take. She felt like it would be best to let the chemo go everywhere. Felt it was counterintuitive to have a systematic treatment and not let it go everywhere cancer cells could go just to save our hair and nails. She was an oncology nurse with 20 plus years experience. Her reasoning made sense to me. She said that all of those SE are temporary so while I know they can be traumatic, it's not forever. Of course everyone needs to make the decision that makes the most sense to them. Good luck to you all. :-)

Donna I heard the same thing cancer cells can go in any cells so you want to hit them all. No icing of the nails or cold caps for me. I can regrow nails and hair!

EnglishRose & Donna - thank you for the positive information.  Donna we are definitely close and I am also electing the DIEP Flap but thought it would be in October before we started down this path!  I do feel better seeing what your MO told you and I will take it to heart!  I am dreading and looking forward to tomorrow all at the same time!

Donna, thats my feeling exactly bout icing and cold caps. I want every cell zapped!



Amy - tell me more about the grants? I have copays and a max out of pocket to cover so any help that is out there I would love to know about.



Finally feel like eating!

Mariposa - I hope you got through today with nothing any worse than tired.  I have pre-emptively taken the anti-nausea meds once i got home, so the nausea would not be an issue.  The nap felt good and I have tried to only eat those bland foods that - if necessary - won't be too bad coming back up.

Some sort of mistake at the lab and my Cytoxan didn't show up - so I go back for it tomorrow.  My friend is going with me.  The one advantage is the IV anti-nausea, again.

My port is still quite swollen and they were able to use it.  They didn't have any lidocaine, so we applied ice for 15 minutes.  It didn't hurt as badly as someone hunting for a vein in my arm.  They did call in a script for the cream that I will put on before I leave in the morning!!  (After the pre-lumpectomy needles, I am no longer brave!)

I had very little sleep last night due to the steroids and lots (lots!) of nervousness.  Probably little sleep, tonight for the same reasons... and I do think my lower GI may keep me up, too.  Thank goodness for the "shopping list" - I have lots of meds available to help with side effects.

Thank you to everyone who has contributed to the knowledge base, here.  I found that my questions were well-received and I feel much more knowledgable about what is going on and what to expect. 

Sherrie

Neta, I see why you elected to take the shot...my granddaughter who started kindergarten this year already has a cold. Which province are you in?



Sjaine welcome to the sept group, you will find a lot of support and answers here.



Amy what a relief to get the neulasta shot for home....80 miles would be awful to drive for it.



I hope everyone is having a pretty good week!

When you usually get the naulasta shot??? how many dyas after chemo........

Amy...we will be  on the BGC tomorrow at 9 am 

We get the shot 24hrs after chemo