Starting Chemo, November 2013 Group

     Hi, my name is Maggie. I was diagnosed with stage 3 Her2+ breast cancer in 2010. Had 16 rounds of chemo, then mastectomy, (single) then  radiation then 12 weeks of Herceptin. Have been taking Tamoxofin ever since and felt good about being a survivor. Well, in October of 2013, went to ER for rapid heart rate and they did CT scan and saw fluid on my lung, they drained the fluid and it was cancer. The good news is it was Her2+ like before so started chemo. Was going to do 8 rounds of Herceptin, Taxotere and Perjeta but had scan after 4 rounds and Onc decided 6 rounds were enough. Had 6th and last round of chemo on Monday. Now have to go every 3 weeks for Herceptin and Perjeta (but am losing the Taxotere and the Neulasta shot so am happy about that) 

     I came on here to ask a question today. As I said, I just finished this chemo. I had belonged to a few groups that had many people in them, that I had stopped going to when the chemo started because of the weakened immune system. Does anyone know how long I should wait before rejoining these groups? I remember in 2010 asking the Onc the same question and she said "it is different for everyone"   Was anyone told anything different by their Oncs. I just had the last chemo on Monday so I'm thinking I will at least wait the 3 weeks for the chemo to get into my system and get over the side effects before I start back with these groups but was anyone told anything else? To wait a certain number of weeks for example? I know every case is different and unless you are taking the same drugs that I took, you may not be able to help me. I am just not sure what to do. I like things to be black and white so I would have been happy if the Onc said "wait this many weeks and then go back to your normal life" but she didn't. If anyone has any feedback on this, I would greatly appreciate it. Thank you so much. 

Hi, Maggie!  I re-read your post a few times, and I'm thinking that you're asking how long before you go out and socialize with (big) groups of people?  If so, I say go as soon as you FEEL well enough, and just keep your distance from anyone who seems unwell themselves.  I'd probably not do too much close hugging, but that's just me.   If you're talking about joining up on the message boards, join away!  Every board I've participated in here has welcomed me with open arms, and I think you'll find the same thing too.  

Thanks, Amazon.

I've also got one more to go and I'm not even dreading it because it IS the last one. There have been a lot of times over the past few months when the idea of "one more to go" was so far out of reach I couldn't even imagine it, like a little kid trying to imagine Christmas being "soon" at the beginning of the school year lol. I should have remembered that I'll be 50 years old in a few months and that time really does fly now, whether I'm having fun or not. Now the "one more to go" is here and I can hardly believe how the time HAS flown. Can't wait. But I bet I cry like a baby in the infusion room, for all those times I haven't cried for the past few months. But that's okay, too.

Smrlvr, for the first two rounds, a few days on hydros were all I needed, and after that I was good. This time has been a different beast; the same dose of hydro didn't even take the edge off it, so advil and aleve would have been pretty powerless against it.  Even the oxycodone was only settling it down to a dull roar for a couple of days there.

It is at least much less intense than it was, and the codeine is working pretty well for the moment-- I still feel the pains but nothing I can't handle, so obviously it IS getting better, albeit, very slowly. Maybe by the weekend I'll be human again, we'll see. I did manage to make my husband some spaghetti for dinner, so that's something at least. I ate too much of it (it tasted like it was supposed to!) and will be regretting that later, but God knows I have plenty of meds for indigestion, so what the heck.

BigT - woot woot for last taxol tomorrow! 

Bec - I can't believe you are already halfway through rads.

Northwinds- I hope your SNB for melanoma comes back clean! Sending you prayers!

I started tamoxifen yesterday and will have a head CT scan tomorrow. I have been having headaches every day for 3 weeks.

Tonilee, you let 'em blast whatever they think ought to be blasted. I know you're worn out and overwhelmed, but soon, SOON, all this will be over and you can start building back up instead of constantly being torn down. Come here if you need pep talks..... if you're too tired to explain just type "HELP!" and we'll chime in and get you ready to get back in the ring. That's what we're here for. That's what we are ALL here for, because sometimes the rest of us need that, too. Close your eyes and imagine all the hugs we'd be giving you if we could *truly* all be going through this together, and I mean  really really imagine each hug and each good word, and let that give you the strength. It will work. You can do this. I know it.

I spent the evening kind of miserable; the codeine took the edge off my pain but by the time it was time for more meds, it felt like every fiber in both my legs hurt to some degree or another; none of it severe but all together collaborating and combining enough to make me a grouchy, teary, miserable, mess. So at 8 I took my oxycodone and NOW I feel human. So, oxy it is for now, until things are better, and I am finally convinced that no, I'm not just being a baby, it really DOES hurt that much. My husband and I even almost had an argument while we were preparing dinner--over something silly. We have been together for 10 years (or it will be 10 years in May) and in that time we've had less than 5 real arguments with hurt feelings and harsh words. I was that miserable. Luckily, he realized that and came back into the kitchen kidding around with me and picking on me and just like that we were "good" again, but yeah.... I'm not gonna start having arguments with the sweetest guy on earth just because I don't want to take oxycodone for more than a week for my pain.

I'm not even sure why I worry about it; I know people that pop the things like candy, and at a much stronger dose than my 7.5 mg ones. But, before being diagnosed with THIS crap, if I had a headache I wouldn't take a tylenol or anything else for it until I had tried caffeine (lol,) a hot shower, perhaps a nap, laying down in the dark for a bit, a head/neck massage if anyone was willing, or almost anything that wasn't a drug. Now I look at my sack o' drugs including all my anti-nausea stuff, anti-heartburn stuff, anti-anxiety stuff, steroids, etc., plus think of the chemo that they pump into my body at intervals, and sort of have to laugh at myself for resisting continuing to take a drug that's keeping me human JUST because *I* don't think my pain should have lasted this long past infusion.

I am capable of being so silly sometimes.

Of course you are right, Tonilee; yet still it makes me feel better to hear it (read it.) It's really amazing though, isn't it, how it seems like every drug leads to some other drug. Chemo, and then all the drugs to counter-act the side effects, and then more drugs to counter-act the side effects that those drugs bring on. I told my husband the other morning that what gets me is that most of them say "take with food," but by the time I've taken all my morning pills (right after chemo) it's a wonder I have room for my breakfast at all. In fact, honestly a banana is about all I have room for. The pills are quite filling! LOL Of course the oxycodone calls for a stool softener, which for me also means something for heartburn, and on it goes. (Luckily, my onc clued me in that maalox and its clones not only help the heartburn, but also have a stool softening or laxative effect themselves, so that's the way to go. It works for me, at least.)

Edited to add: I also still feel positively GYPPED that I didn't lose at least 5 pounds when I had my BMX. I mean c'mon. They had to have weighed SOMETHING. Not fair!

Hi Ladies,

Great to hear from you ((Tonilee))! Please keep talking to us. We want to know your alright..

A funny story regarding drugs,

I too HATE taking this volume of drugs, and have tried very hard not to take anything that I feel is not necessary. One of the many reason is regardless of what I take, my dream life will start to get crazy with any addition or subtraction  of new drugs.

Last night I decided to back off the codeine and steroid and didnt take any benedryl, I went to sleep very fast and didnt wake up much. This morning my husband tells me I chatted and yelled all  night. It was so bad, he started to talk back to me in hopes to wake me up. The dog left the bedroom because I was so loud.

Anyway, my new mantra regarding drugs is I take what I need to, and by the time I say I need it it s usual a bit late. I was a very health  concious before BC and I will be that again. It will just take some time.  

JAB

Audra, your report from "the other side" is MY light at the end of the tunnel. Thanks for the cheer! I will keep my fingers crossed that your new MO is also a Dr. Rockstar!  

Jab, I was feeling pretty good at bedtime last night and didn't take anything at all for pain, since there wasn't any, but I also took forever to get sleepy....probably because I drank a cup of coffee that my husband had made too soon before bed and it was really strong. When I finally did start drifting off to sleep I kept startling myself awake feeling a little frightened-- not unusual when I've had coffee before bed and set myself up for a night of nightmares. So, I did take an ativan. Wound up having weird dreams that would last about 30 minutes, then I'd wake up desperate to pee (yes, every 30 minutes lol) and then have another 30 minute dream on the same theme as the one before. Oddly enough, even though I didn't even begin to go to sleep until after 2, I woke up at 7 feeling well-rested and great!  I wonder, in a way, if some of the taxotere pain is actually related to water retention swelling. Hmmmmm. I *did* comment to my husband last night that even though my legs didn't appear swollen or anything, that in addition to hurting, they felt heavy and *squishy*, especially my thighs. Something to consider, I reckon.

Jab,

   Hi, I'm sorry if I was unclear, When I said groups I meant going to an event in a building full of people (like going to church or going to my nephew's play) Thank you so much for your feedback. 

Take care,

Maggie 

Bec65,

     Thank you so much for your feedback. I really appreciate it and I am going to take your advice. I also find this website and all of you very helpful people, amazing. Thanks for helping me get through this. Take care. 

Lisa, I found last time that as I got rid of the fluid retention (day14-21) I felt much better. I pee a lot too. Also, regarding nightmares, another reason why I don't take Oxy. When I do sleep while on it, I have crazy nightmares.

Amazon - It sounds like you are getting that rolling pain from Taxotere. Did you just get another infusion this week? What day are you on, post infusion? I'm asking because, for me there has been a pattern to the pain levels relative to the infusion.

Audra - Thanks for the great encouragement. It is great that you are exercizing again. I miss my runs and hikes. It will be great to feel strong again!

BigT - I took my pup for a walk today too. It is the first one in more than a week. Both he and I need to get out more.

I went to see my plastic surgeon yesterday. Because I am having the other breast removed pre Rads, I am having an additional surgery to put the expanders in post rads. When I was there, he said a few things that 'struck' me. He referred to my 'kind' of cancer as 'advanced' and 'significant'. He also said that because I was a cancer patient, I jumped to the top of his list for surgery and I could have it when I wanted. He said he has lots to work with for my new foobs and thinks they will come out great. I find the idea of 'choosing' my new foobs to what I want, very strange. Anyway, I left feeling  I'll look Ok when this is all done. but it will be a while.....

Hi Silvia,

Im going with the Expanders and implants. The details are still to be determined. Good luck on Tuesday. Let me know if there is anything I can do to help.

Judy

Im still pretty tired, but the pain levels have ramped down so that is much better. Regarding your question above, I'd wear a mask. Those little ones are magnets for germs. You are probably all right without it, but why take chances. Anyway, I'll send all positive energy to you on Tuesday! Just close you eyes and, like Lisa said, feel the hugs.

Kimmie, sounds like a question for the Stage IV forum ladies; they are probably a lot more familiar with Xgeva than most of us here would be.  Great news that the chemo is working! Hugs to you!