August 2013 Chemo Sisters

Thank u ladies for the welcome!  So nice to be back among my sisters in fighting!

NAAN, I love you! I was diagnosed on June 19 with TNBC. I had no earthly idea what it was, but after researching for the past 2 months, I read that what has happened to you can happen to me.  I'm a yount-at-heart, old-in-body greatgrandmother, age 69 on Nov. 4, my last day of chemo treatment. You materialized into a human body exactly what I have been thinking all along. Although my tumor was only 6mm, it was IDC. I "supposedly" had the sentinel node disection with 2 nodes removed, but pathology said there were no nodes in the lymph tissue. It was adepose tissue. The SO didn't remove the lymph nodes because they were deep within my body and it would have left me numb down my whole side. No one suggested more surgery, so I made the appointment with MO on my own, who said that my chance of recurrence was very low because of the size of the tumor. He had put my statistics into a computer program that throws out a graph that shows where you are according to statistics for all TNBC women. I was in the 10% category because they lump all tumor sizes <1cm (10mm). I was close to the middle, so he said I probably had a 5% chance of recurrence. My brain told me that if SOMEONE falls in the 5%, it could be me. He did not tell me not to have chemo. (I was only scheduled for spot radiation at that point, no chemo). He said he wouldn't tell his own mother not to do radiation because he wouldn't want me to come back in 2 years with a metastises. He said that he and I both would have to say " I wish I had chemo." I insisted that I wanted it, that I knew it was chancy at my age, but I wanted it. He referred me to Indianapolis to a specialist in TNBC, who conferenced with her colleagues and came up with a treatment of chemo TC of 4 rounds, three weeks apart, then total breast radiation. SHe agreed that it could have gone to my bloodstream in the time before it was diagnosed and the time since surgery, which ended up to be 6 weeks later. My wonderful MO had already told me it could have gone to my bloodstream. I started my 1st chemo yesterday, Aug. 26. Yours is Aug. 29.  I will pray for you, strting right now and along with the rest of the prayer warriors on this board, we will all pray daily for your success at beating this little monster. God loves you. He made you, he wants you to live to stay on this earth to do his will, that's all there is to it. We will pray you well. God bless you today and forever. Sharon/Sherry/SAB

naan1004: Welcome, so sorry about your DX. But I have to say you sound so very confident and I think that is half the battle, is your state of mind. Good for you and professing all those positive words about beating this is great too.



Well, if you read a bit of the posts you should know us, I tell everyone there is nothing we cannot say on here. We are the only ones who know what we are going thru.



How did chemo go for you last time?



Good luck and post often

Love, Rayna

Thanks for the warm welcome.  

hi ladies,

Well thursday is the big day! my first infusion. I really don't post much on this site, but I have to tell you that you ladies are great!! I feel a lot more confident for thursday because of all of you. fingers crossed all goes well.

Lighthouse, welcome you have come to a great forum for help, support and best of all randome outbursts of laughter 😄 please keep us posted on your journey as is is a long and stressful one full of ups and downs and lot's of decisions to make but trust in your gut and it will tell you what's best. Hug's new friend.🌻

Naan104, welcome to our group I am so glad you found us and I am so sorry about all that you are facing, I have only had a small taste of that and it has knocked me off my feet. After my first chemo 2 weeks ago I ended up in the ER due to my shingles flairing up at the base of my spine( I have had them for years but chemo blew them out of the water) and while doing a CT they saw some bone mets in my lumbar spine, so then they did an MRI and conferred the Dx. I saw MO last Friday for a 1week f/u and we looked at films together and he said " I hope they are wrong, but they are really small spots so chemo should get them" They did not show up on PET CT, so after chemo we will do another PET and MRI and see if they are still there. I knew there was still cancer in the nodes from the PET but the thought of it settling in my spine scared the shit out of me, still does but I am praying with every chemo those spots just disappear. Good luck with the rads they are starting on your brain and are you going through again now too? And I am amazed that with 0/5 positive nodes that you even have any mets, how the hell does that happen. Please keep us posted and here is a flower for you cuz I think flowers make everything better. 🌹



Shary🍁

Rhody, about friends disappearing. Now that I vented yesterday, one actually showed up last night. So maybe once a month is what she is able to offer and I will just accept that that is the best she can handle.

Gashgold, I finally asked the intimate questions at about the 4th visit. No one else brought it up. My 30-year-old daughter was there and I just told her she might want to shut her ears. I was told there is a chance of microsopic tearing which could introduce infection. The best time was about a three day window in the week before the next transfusion. My opinion is I really have other things to worry about right now, ha.

Bella, I'm still waiting on results of my HRCA test which was sent in the middle of July. Maybe there is an insurance issue which is holding it up. I guess I'm not pursuing this too much at this point as it doesn't change the current choice of treatment right now. It would my choices later.

Naan, we are here for you! Share away, prayers and positive thoughts will be sent your way!!

Hi Ladies,

I'm new to this board, I just had my first infusion on 8/15.  One down and 5 more to go before moving to herceptin only.  I've been told by my oncologist to expect hair loss to start 2 wks out, which means I will start losing it in just a few days.  I've been thinking about buzzing it off, any thoughts from anyone?

Also, colgate has a new product out called peroxyl, it worked wonders on my first bout of mouth sores.

Thanks!

Shary - I know how you feel about something showing up on a scan.  I had 1 node tested and it was positive, but then my brain MRI showed "unusual uptake on front lobal bone that may indicate metastatic activity".  WHAT?!?!?!?  I have it nowhere else but my breast and my FOREHEAD?!?!?!?  My surgeon wasn't concerned at all, thought it was most likely something else, but the PET scan I had yesterday should show for sure. 

Batcatlady - Right there with you.  Looks like my 1st tx will be Thursday, too.  Just had my hubby call to ask because they didn't tell me.  Really, I would like more than a day's notice!  Don't they know I have to get mentally prepared to poison my body?!?!?!?  Ugh.  So now I'm making a shopping list for tomorrow to get all of the goodies. 

Lisasp - My doctor didn't tell me about the lidocaine... fortunately (for me, not for them) I have two really close friends and a sister-in-law who have been through chemo in recent years and they're giving me all kinds of helpful hints.  I used the lidocaine yesterday for my PET and didn't feel a thing!  How come doctors don't tell you this stuff?!?!?!? 

About neulasta - is that a SHOT shot, or does it go in your port?  I'm just wondering, since we were talking about Lidocaine, if they will use the port for that too so I can be prepared.

My husband thinks I over-think and over-research things to death, but honestly, how else would I know all of this off the wall stuff?!?!?!?!  Claritin for bone pain?  Ice chips for mouth sores?  Hmph.  You'd think all of this would be standard information they would pass along.  I guess it's like when you're pregnant and learn more from other women who have given birth than from your doctor.

Hello sgyukon!

I think everyone has been all over the board on this one. I'm only a week out, so I know its getting closer and I actually have no idea what I'm going to go. When I went to the American Cancer Society last week (they stocked me up on a bunch of free items) the gal there was a two time survivor. She mentioned she didn't shave hers off early. Her opinion was that if too early there would be some stubble left to come in which would be annoying. But maybe everyone will start sharing how theres is going and we can find out if this is true before it hits us.....? Everyones different. I can understand clipping it shorter so you won't be waking up with mouthfuls of hair, but alas, I (so far) havent gotten the nerve to do that either.

LOL   That's awesome!  I'm going to remember that - I can easily play the "confused" patient!  It really sucks that we have to do this, but I know all of this is extremely URGENT for us and not at all for them.  Just another day at work with the cranky cancer patients. 

I typed a post this morning that sounded very similar to what I just wrote. I hit a button and thought I lost it, so if I am repeating, remember my age and just pass me by today. I'm forgetful enough, but chemo brain will probably do me in. I feel drunk, although I don't drink.

I had a very rough evening last night. I ate chicken noodle soup and although I defatted it, I got very nauseous. I ate chrystalized ginger (very good for nausea), took both nausea meds, was only supposed to take 1/2 of one, but forgot. Felt better this morning and could eat cereal, but had to go to dermatologist w/ hubby then to get neulasta shot in back of upper arm. No big deal. I was gone in the car from 9:30 until about 3:30 and I am very tired. I tripped over everything like the slanted ramp going into the doctor's office, a rug at Kroger, you name it. I haven't felt well all day, just tired and listless. I developed a slight sore troat the day before my cemo, so that may be part of it. I laid down when we got home for about an hour. I drank a cup of my magic mineral broth, drank some pomegranage juice, and now, here I am. Barry is fixing his dinner. I thawed lentil soup that I made ahead of time with the mineral broth base for my dinner. It is supposed to help boost the immune system. I'm trying to eat while I can, but the steroids haven't made me hungry. I have been brushing my teeth often with Biotene toothpaste, 4 times already, garglilng with Biotene, gargling salt and soda water before the Biotene, and once a day, rinsing with a flouride rinse to protect my teeth. I have all of my teeth except wisdom and one molar. I don't want to start losing them at this late date. I am not taking the Claratin until I feel pain to see if it is really what helps or if I wasn't going to get it in the first place. Everyone's prayers were felt on Monday during my infusion. I didn't get sick at all. It was like resting in an easy chair. But that dumb cluck chicken soup did me in. I'm freezing the rest for next week when I can tolerate more fat. That was really bad. No throwing up, just nausea. I slept well after taking that whole pill rather than 1/2. It says it causes sleepiness. It caused double sleepiness for me. I hope that the others who had infusions Monday, that you are feeling spunky and sexy and on top of the world. I am praying for those going to their first it infusion on Thursday. Being prepared and knowing what to expect helps tremendously. I'm going to rest alot tonight and see what that shot does to me. I may work a logic puzzle, one of my favorite puzzles, but I picked a long one, so I don't know if I'll get it done. Have a blessed night. Sharon

OMG! I need to vent! My MO's office just called to confirm that I am on the schedule for Thursday chemo. I went through my list of questions to see if she could answer them (most she couldn't... said to ask at my chemo class tomorrow). One of them was how long my premeds would be, since I'm going to use cold caps and have to wear them for 50 minutes before actual chemo drugs start, then it's just up to us to time changing them out the rest of the time. She started laughing and said, "I'm thinking it would just be easier to lose your hair." Seriously?!?!? You work for an oncologist and you say something like this to a cancer patient? She may not approve of cold caps or think they are a quack or whatever, but it's MY business that I am going to try them. Holy cow I am so mad. Hubby says maybe she was just trying to keep it light and be funny, but no. She was seriously amused and pretty much making fun of me that I'm thinking the cold caps will work.

Normally I'm not a quick on my feet thinker, but I immediately responded with, "Ok, how about you lose your hair and I'll keep mine?" Would she still be laughing if SHE was going to be bald in two weeks?

I'm trying to stay mad so I don't cry. I hate this whole thing so much.

HAPPY BIRTHDAY HVV: I'm sorry you had such a bad time this last time, I will pray that you have a better time with SE's with the next infusion.



As Naan1004 said above to take your anti nausea pills from the day before regularly for the whole time, once you are sick it can't catch up easily, I was instructed to take them regularly whether I was nauseous or not and I haven't been nauseous or vomitted once since this started. Don't know how long yours lasted but I know that you were sick in the beginning.



Love, Rayna