February 2014 Starting Chemo Club

Macintx - Try to not do any heavy lifting or strenuous activities with your affected arm with the drains. You do NOT want a seroma. I've seen patients coming in month(S) for an aspiration post-op. Sometimes when you can develop a pocket there and it just fills up with fluid. Take it easy. 

Thank you for the neuropathy advice. Didn't think to ice my feet and hands. Will talk to MO about possible supplements, etc. Will keep you posted if he suggests anything. 

I still have one drain in post surgery!  I will be four weeks out on tuesday.  The drain is coming out Monday even if it is still producing a lot of fluid and I start my chemo on Tuesday.  I went from not having anything scheduled today to getting everything ready for tuesday.  It's a crazy time.  I am happy to start but feeling pretty scared because I don't know what to really expect.  I guess one day at a time.  Good luck to everyone.

I'm joining the group.  I start chemo on Monday 2.10, for 52 weeks of therapy - 6 rounds of TCHP (P being Perjeta), followed by H for the rest of the year.  I had my port placed yesterday by my surgeon.  I'm really bruised and sore today.  I have still been having pain management issues from my bilateral mastectomy that I had a month ago, and had my second tissue expander inflation the day before the port surgery, so I'm pretty sore.  I have not yet been able to wean off of Percocet.  Tried to do it using Motrin, but my oncologist has banned Motrin due to fear of kidney failure, based upon the chemo and side effect meds. So, I'm back to Percocet.  The pre-surgery Fentanyl was the best I've felt since before my mastectomy!  I asked my oncologist whether I could have Versed during my months of chemo (I was only half kidding), somehow he wasn't interested in that idea...  The anethesiologists yesterday thought that it would be a new target patient set for them - they'd come to the chemo bar and offer Versed, pedicures, massage....  We had a good laugh.

I feel like surgery is easy (relatively speaking), but I'm TERRIFIED of chemo.  There is a history of leukemia in my family, so we avoided ACT.  I'm afraid of the side effects, especially the hair loss.  I'm afraid that I will be unable to care for my 8 yr. old daughter.  I'm a single mom, and only get paid for the hours that I work.  Things were on the edge financially in recent years before I went in for my baseline mammogram and learned of the cancer.  (I actually had myself convinced that they had found a dead spider in my breast instead of cancer and had decided that I would not be mad at them for cutting off my breasts...talk about denial!)  It feels like I should be cancer free at this point, after all, I felt completely healthy and fine before surgery...  I'm having trouble getting behind chemo and know that I need to do it before Mon.  

I had proposed to my oncologist a regimen of weekly Taxol and Herceptin for 12 wks,. continuing H for a year, as the San Antonio Breast conf. had posted great results with that protocol - 3.5 yrs. out from trial with over 98% DFS.  My oncologist was open to it, but the tumor board at my hospital overruled it because they thought that it was too new, that because I am young - 40 - they wanted to hit it hard, and because the study included patients with tumors less than 3 cm and mine was exactly 3 cm.  I called Dana Farber, to talk to the lead researcher on the study, but was not able to learn over the phone whether this is appropriate for my specs.  The researcher is now conducting a new trial for Stage 1'ers using TDM1 (that would be a great option!!), and the study is using the procotol that I was trying for as the control arm for the "standard of care."  I found a number of new trials using the protocol that I had asked for as the standard of care for testing newer regimens against.  Needless to say, I was pretty frustrated that it seems to be an off label use that is stand of care some places, but not here yet.  My life situation does not give me the option of picking up and going to Boston for treatment.

I guess that it mostly boils down to losing control.  I am having a hard time not being in control over this whole cancer thing.  I am so used to being self sufficient, a caregiver and type A career mom.  It is hard asking for/accepting help from family/fiends (though I am sooooo thankful to have it), and mostly hard not being able to control the path that I am on.  I am a person who never takes medicine for anything, sees my doctor once a year for my physical and I'm an athlete.  Now a have the line up of pill bottles, and have acquired panic attacks that started with my cancer diagnosis, so that adds to my medicine.  I've learned that with my anxiety, I'm an insomniac - even staying awake through Lorazapam and Ambien!  (Which makes me nervous about the chemo side effects since my oncologist has prescribed lorazapam for nausea and sleeping - what do I do if I'm already on it?!)

Cancer just makes no sense.  I find it ironic that they lay out risk factors that increase risk of getting breast cancer, but at the same time they say that at least 80% of breast cancers are found with people who had none of the risk factors!  

And its the little things - the only wig shop in my town just went out of business.  That leaves internet choices.  The internet sites seem to have a no return policy for any wig opened up out of its packaging (I get it - hygiene), but I have no idea what size I am or what "wig accessories" I need to get the thing to stick on my head.  It seems that the sites do not have instructions for the wigs, and I'm wondering if most people just know this?  I decided to buy a wig (guessing I'm average size), a cotton wig cap, a mesh wig cap and I bought head glue.  I have no idea what to use and am probably being ridiculous with the whole thing.  I just wish there was someone local for a fitting and who would have been able to color and cut match my long wavy hair.  It also seems that most of the local breast cancer resources available to me are targeted for older women.  I feel alone.

Anyhow, this is my first post.  My well meaning family get upset when I voice my feelings.  They are not used to me doing so.  When I'm being honest about my fear or frustration, they tell me that I'm being negative.  While I have a positive outlook on the end goal (and will not accept anything less than permanent DFS), I need for someone to say that my fear and feelings are ok, normal and justified, rather than telling me that my feelings are to be dismissed.  I am thankful for this forum and appreciate anyone who read through this to listen to my rant.  Thank you and I apologize if this comes across as negative or too many complaints.  I'm trying.

hi everyone , a quick update,just back from first chemo ....feeling ok. Took three attempts to get IV in...my nurse  for the last  one got someone else. I have good veins ...thick skin /thick veins ...supposedly .  Was there about  four hours. The gloves and slippers that are frozen ..really hurt for 5 mins. The first time , when they switch new ones on ...really hurt for about 10 mins. , not comfortable at all.... But loosing finger and toe nails seem worse. I also have a strange sensation on my tongue now ( I did suck on ice) and I am now.  Otherwise ok... Head a tiny bit foggy and a gurgling  stomach a bit. 

Had some lunch... Then relax ...hopefully. 

Wishing everyone all the best ! 

One done , three to go !

All this talk of loss of finger/toe nails has me really bothered. More so than the hair...ugg!

I'm thinking of you all, those that have started and those of us still waiting to start. ((hugs))

Ahhhh yes....the pain pump!

Well, that is good to know about the nails.

Were ya'll instructed to start Zofran a day or so before chemo?

grammyb - I  became prediabetic AFTER chemo.  We think it is due to all the high doses of steroids or somehow the chemo itself damaging my system.  You definintely will need to discuss with your onc what extra measures you will need to take to try to keep your glucose under control during chemo, especially when taking steroids (they are required to prevent allergic reactions to chemo).  

CT, bone scan, etc. before chemo really varies by onc.  Mine ordered a PET.  Some order nothing. 

Echocardiogram (or MUGA) is standard prior to starting Adriamycin or Herceptin because these drugs can potentially damage the heart.  They will repeat these tests at regular intervals (usually every 3 months on Herceptin, if I recall correctly).  While on A I'm not sure - they might just do a prechemo and postchemo test. 

MUGA is to see if your heart is healthy enough for Adrymicin/Herceptin. While most get MUGAs every 3 months on Herceptin not all do. Mine did not and is well known for her work with Dr. Slamon, Herceptin and HER2+. I do wish I did have at least one final MUGA to make sure there was no damage but I guess when they heard I was doing all this exercise through most of my chemo they weren't worried. I was power walking (or gym) 3-4 miles through most of my chemo.

I too had a CT of lower abdomen, chest X-ray, bone scan (different from bone density). If you are stage III or higher this is more common. I also think it is common for some of the HER2+ gals to get all these scans. I don't believe the scan all early stage. Chest X-ray is normal for most major surgeries I think as well.

This is my first post, everything is moving so quickly. I just got diagnosed on 1/27 and I'm having neoadjuvant (sp?) chemo starting 2/13. I'm getting an echo, PET and port put in on Tues. My MO wants me to start with AC every 2 weeks 4 times and then Taxol every 2 weeks 4 times but also introduced me to the option of a research study starting with Halaven (Eribulin) followed by AC. Any advice on choosing between these?? Of course if something comes up on the PET then that may change the drug regimen, but she still plans to start on the 13th either way. Also, anyone with small children in the group?

So sorry Njmom3 that you dealt with this issue on your port placement.  I haven't had mine yet, they are suppossed to call me Monday with the date for that. Ready to get this show on the road and kick any rouge cancer cells to the curb!!!!

princessrn don't turn into a lago groupie. You have the medical training not me Seriously as you know it can take a year to fully heal from surgery. Now this pulling could be cording. I had it on my arm that ironically didn't get LE (lymphedema). Some say it's a warning but I know many who had cording that did not get LE. Now your surgeon should have given you some stretching exercises. If s/he did not a phone call is in order. There are several you can do and you work up to them. If that doesn't do the trick you may need PT (physical therapy, physical torture or what ever). I did need PT. You can read about cording here: linky Now as far as wearing the sleeve to prevent LE on planes... It gets debated back and forth. I have LE in one arm (no nodes no rads) and no LE in the other arm (4 nodes). When flying or weight lifting I wear sleeves on both. All other times except sleeping and bathing I just wear on my LE arm only. More info on LE check the link I posted. Here's the what is page: linky

Njmom3 I have issues with general. Makes me nauseous especially if they use gas. Sounds like twilight isn't for you. Sucks that happened because port surgery is usually pretty easy. But stuff happens. I'm sure they talked to you other about stuff happening too.

grammyb I'm not sure if it was this thread or another but I'll repeat. Not unusual not to have scan is you're not stage III. My BS ordered them but he was pretty sure I would have micromets given the size of my tumor and being HER2+. We knew I was going to be at least a stage IIB but he didn't think I would be. Also there was several weeks before surgery so he order them. Granted I surprised him with no nodes... but for some reason this was no surprise to me.

Ddgm1003 I went wig shopping 4 days after my 1st chemo. Just ordered it. I think my hair started to fall out day 15 or 16. I was still not wearing a wig or scarf at my 2nd chemo but I have a lot of thick hair so it took longer for all of mine to fall out.

36with2and4yrold I now folks that have been on Halaven. It too has a risk of peripheral neuropathy so be sure to report to your onc if you do. There are many folks here that have small children. Not sure if there is a thread on that.

CheristyGA Ask about Prilosec. If that doesn't work the prescription Protonix or Nexium. If that doesn't work or stops working ask about Carafate Suspension. I had heartburn/stomach issues. Prilosuc never works for me, ever. So I was on Protonix till I switched insurance. Then had to go on Nexium instead. Also on Carafate solution too by the last few treatments. I remember that pain! It's awful. Suffered for a week till we got something that worked (also NP screwed up so took 5 days to get my script).

Remember if it's that bad call. There is always someone on call that can call in  your script. Have your pharmacy telephone number ready. Ideally the one that is open 24 hours if you're calling tonight.

Do not eat close to bed time or lie down soon after eating. Avoid acidic foods and chocolate till you get this resolved. Stick to rice, toast potato without skins till resolved and don't over eat.

I have IBS and have had heartburn issues 3 years prior to diagnosis. That's how I knew what would work and wouldn't. Bloat, well get used to that. I retained a lot of fluid so I was bloated often.