January 2016 Chemo!

Valstim, that is my worst nightmare. I don't want to end up in the hospital. Glad you are better and hopefully they worked out your meds for next time.

I want to send you all gentle hugs and good wishes. I am not going to be doing chemo this month. My fourth (!) Her2neu test came back negative so the onc has recommended no chemo based on my low oncotype and the now negative Her2 status.

Haven't been "here" in a few days. Hope everyone is doing well.

I don't want to scare anyone, but port placement is not just an "easy" surgery. It has risks and people should be made aware of those before the procedure. I had my port placement on Tuesday afternoon and the nurse told me the same thing (easy) and I think she jinxed me.When I came to, the left side was a "failure" because the surgeon couldn't find a vein so it was on the right side, same side as my lumpectomy. Two incision sites and pain from both. I also could not breath - my knowledge was limited so I thought it was from the chest pain and back pain. They admitted me overnight. An x-ray was done - port was in place. The night was plain misery. My voice changed - sounded very nasal and I couldn't catch my breath if I did anything more than sit. I asked to walk because I hated not getting any exercise and that wasn't much fun either. Ended up getting about 2-1/2 hours of sleep that night. Next morning - same thing - can't catch my breath and nasal voice. Repeatedly told nurses and surgeon that I was having trouble breathing. I was discharged. Came home - trouble breathing but glad to be home and resumed some "normal" activities. Thursday morning I ran my cold caps to the hospital because I was supposed to start chemo on Friday. I called the surgeon's office and left a message telling them I still couldn't breathe and had crepitus (sounds like rice krispies under the skin). Right after I got home they called back and said to go back to the hospital for an x-ray. The hospital is about a 30 minute drive and we have some icy roads around here. Back for an x-ray and the tech told me to leave because it would take an hour, probably, before someone would read it. Half-way home and they call and tell me to go back because my left lung is collapsed. The surgeon will be up in an hour or two and insert a chest tube. I went home and packed a bag and called my hubby to take me back down. BTW, he's already been down earlier to take the caps down but forgot some of them (hence my first trip). They are hovering over me when I arrive because I have a total collapse and have been walking around with it for a couple of days. Surgeon inserted the chest tube with a Heimlich valve and I'm admitted to the local hospital. They treat me like royalty locally and I felt well-cared for. But, I am on a blood thinner so I am oozing and have about 3 inches of padding around me. However, Friday morning comes and now the surgeon and the rounds doc disagree over the rest of my treatment. Because the x-rays show consolidation, due to the collapse, the rounds doctor calls it pneumonia and orders blood cultures and an antibiotic. The surgeon and radiologist say the consolidations are from the collapse. The rounds doctor calls my oncology group and they say "NO" to chemo on Friday. The surgeon does not have final say because of "privileges" status so I am now in limbo again. I am home, still wearing the valve, in pain - but I can breath, and have no idea if and when I can get back to work, when chemo is going to start, etc. I have more "padding" including a towel to catch any oozing and hopefully the tube will be pulled on Monday without any more complications.My final thought about a cancer diagnosis - you want to save your life, "they" want to save your life, BUT it is no longer "your" life. I feel like a pawn on a game board. I am being moved from space to space with no say in anything. "This is your treatment, go do this, do that, now this, then that." I am so frustrated.

thr- so sorry to hear about all that you've been through! When my port went in the surgeon lost the first catheter and had to do a second incision site too. I was pretty ticked off as everyone said it was very routine too and now I have this hideous bumpy scar on my collar bone. I also didn't understand why he first tried right next to where I have a surgery scar from a thyroidectomy I had about 15 years ago. I'm no surgeon but going in where there is scar tissue sounds like a terrible idea to me. Nothing like what you have been through. It's terrible they had you going around with a collapsed lung for a few days. Hope you are mending well today

where did you order the halo wig from??? I'm going skating today and would love something like that, to put under my hat. As it is I think I'm going to just wear a hat, or my head will get too hot

Good luck Wednesday.

Jill - I ordered from voguewigs. They have free shipping until monday. Also use TENOFFWIGS to save another $10. They had 2 halos - this one is more of a short bob and then they have another that is longer. I was ordering some other wig care stuff so it made sense to roll it all into one. I admit I didn't look around much to see if I could find a better price.

http://www.voguewigs.com/halo-bob-736-top-piece-re...

Thr_yet so sorry about this complication, that is crazy (for lack of better words.) My onc initially told me I didn't need a port, but with so many infusions in front of me I changed my mind. I haven't gotten the port yet though, I have been using an IV no problem. I'm mostly nervous about the future AC infusions though, otherwise I'd be perfectly fine drinking a ton of water and getting an IV. But now I'm not so sure! I hope you are feeling better today.

Hi brandysands - a warm welcome to this very messed up situation. Together we will rally! (Just saying that makes me feel better.)

I went for a second opinion on Monday 1/4 and they started me on chemo 1/7. They gave me steroids as a pre-med during the first infusion. I barely knew anything but it was a second opinion, and it is Dana Farber, so I trust them. I didn't get anything until after that first day. Mine was unusual and definitely more rushed than normally but l didn't feel unprepared; maybe because I was tired of talking about it and needed action. Anyway, I still need to get a port and I have my fourth infusion Thursday. They said I didn't need one right away, but I think I'm going to get one. Sounds like from your dx you'll get the Herceptin and possibly Perjeta too, getting these first is good.

Anyway, you'll need a baseline echcardiogram for Herceptin, you may need a port. I don't know what other baseline scans they are asking for (I had a CT and bone scan.) After that they draw blood and you're good to go. They give you the pre-meds. Maybe I'm simplifying it too much, but that's how it's been for me. You'll probably meet with a nutritionist. Maybe a social worker. But you can do this during chemo too.

I'm starting TC treatmenton Tuesday very worried to start. Had port put in last Tuesday.

Sheri64, we are glad you found this amazing group of people. We are thinking of you as you start treatment on Tuesday. Please keep us posted, and share how you are doing.

Hi friends - just a quick note to say I've changed my user name from jenscott to jensgotthis.

I've been weak since last Thursday. It began with diarrhea. Oh the pain! Then it became dehydration. I missed work for the first time for an infusion. I was given a steroid and some really good anti-diarrheal med. I was told it wasn't my fault. It's a SE.

I could have sworn it was the chile my cousin brought me. Doc said to stay away from spicy to be safe. The next day my sister brings me goulash. She swore she hardly seasoned it. I took one bite and spit it out. My mouth was on fire! The following day my best friend texted me to tell me she as bringing me turkey chile. OMG! Were they conspiring against me or something?? Good lord, I didn't think I'd make it to a second round of chemo. I called my friend. She instead made me a wonderfully bland homemade chicken soup.

I have been drinking three quarts of water a day and taking my anti-diarrheal medication and feeling quite normal again. I'm getting my energy back. Yay! I'll enjoy each day as it comes. Another 10 days until my next infusion, two days after my birthday. Is that great timing or what? Oh I think YES!

Day 6 - First TC Infusion I have had no real side effects to speak of. Constipation that cleared with Senokot and Colace. Last night felt pretty funky with impending flu-like symptoms. But, nothing this morning. Calriton has kept bone pain away after Neulasta shot. Hope I'm not patting myself on the back too soon. Wishing everyone well as we continue on this cancer killing journey

Good morning everyone! Tomorrow it's back to the beast for my second infusion. LIke many of you I dread it because I'm just now feeling back to normal! Praying for reduced side effects this time. I think if I feel like eating/drinking more it will be better. Last time the thought of any food or drink made me want to wretch and nothing tasted good!

ZINNY--I'm so impressed that you skied! We were supposed to go skiing this year (we live about 8 hours away from the mountain) but I got to have surgery and chemo instead. I hope to be back to the slopes next year.

Good luck to everyone going in this week. I'm off to get my blood drawn.

Thr_yet--I'm so sorry you had the collapsed lung! My surgeon told me that was a risk but luckily I didn't have it. Will be keeping you in my thoughts and prayers!