February 2014 Starting Chemo Club

lago

gildedcage Be sure to tell your onc about your neuropathy. It's that important. Yes if it doesn't go away in 2 years most likely it's there to stay. Jan 18 this year made 3 years PFC so mine is there to stay. 

The nails are a separate issue. It's less common. If you ice it has to be really really cold in order of it to work. Now as far as less common, not only did every single toe & fingernail of my lift I lost a few toenails and had to actually have one toenail removed. I remember going to the dermatologist. He said not only did I get it I got a really really bad case of it. My nails look like shit compared to what they used to look like. Some are still a little lifted. I have yet to meet anyone who had issues like me and also did not recover from the lifting. So my experience is a more rare one for someone who is early stage and not going through a life-time of chemo. Sp I never had nausea but my nails got all F-d up. I just can't be like everyone else

Macintx welcome

h0pe

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. 

lago

There are many supplements recommended for neuropathy. B6 and Glutamine seem to be recommended. I took Acetyl-L-Carnitine that I feel really did help. I started to get pins and needles in my hands too but once I used this I didn't. Not so sure this is the best though. Talk to your onc ab out which ones and amounts.

Cici566

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.

seaniebopp

Got my blood work drawn today.  I guess the best thing about that was being able to jump ahead of the line because I am a chemo patient so my blood work had to be labeled STAT.  I've packed my bag, picked out an outfit (remember we gotta keep it cute!), and talked to my Pastor.  So I guess I'm ready! Tomorrow at 9 am I sit in the big girl chair to save my life.  In the words of the great poet 50 Cent (lol)  "I've got a lot of living to do before I die and I ain't got time to waste!"  

Njmom3

Hi hope, glad to hear your port surgery went well, hope the pain is getting better!  I'm going tomorrow, how long did the whole thing take?  Were you completely out?  They told me I'm going to be sedated, hopefully heavily!  Tuesday starts my chemo, getting more apprehensive as the days get closer, as much as I want this over is as much as I don't want to play cancer anymore...

Take care everyone and good luck to those starting their journey tomorrow.

Gina

Moderators

Hi February crew! Sorry we're a little late jumping in here, but we
wanted to provide some helpful links, starting with the main
Breastcancer.org site's section on Chemotherapy, including info on what to expect with chemo, types of chemo meds, and side effect management. Also, the Treatment Side Effects section is a great resource for tips to help manage any side effects you may experience.

There are some really helpful key threads here in the Chemo forum too!
Great tips and practical advice on the following discussion board
threads:

• Tips for getting through chemotherapy
• More Tips (and a Shopping List) for Getting Through Chemo
• PORT PLACEMENT: Detailed description of process
• Head Covering Options for Hair Loss
• wig advice
• Cold Cap Users Past and Present, to Save Hair

Also, Last Month's Chemo thread might be informative!

Hope you find this helpful!

--Your Mods

formydaughter

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.

lago

formydaughter you feelings are normal. All scared of chemo. Most scared of hair loss. When you have bigger tumors and younger age (which included pre-menopausal under 50) they through it all at you. I had the same treatment except for the Perjeta (not approved when I was treated just 3 years ago). Try to find a social worker at your treatment center to help you deal with some of these issues. That's what they are there for.

True story: I met this gal on here on BC.org over a year ago. She happens to live in IL. Scared to death of losing her long hair that went down her back. Her mother was even more upset about her losing her hair. Scared to death of chemo. I would talk to her and try to support her. Ended up she got a 2nd opinion with my onc. I met her that day with her husband. When she was meeting with our onc he told me she had stopped talking. Granted she was talking to me. He said she didn't want to do chemo. Just this week she posted that her mother told her she should keep her hair short! Of course she had already decided to do it. Looks awesome on her. Come to think of it I too kept my hair short. We both look better. BTW this summer her husband  invited me to her big 40th birthday/I beat cancer party. She has 3 kids.

As far as treatment. Most of us don't have major issues with this treatment. Sure you'll be more tired some days but I found as long as I stayed active I had more energy. If I had a job (lost my job 5 months prior) I could have worked through it. Maybe leaving a few hours early on a few days. I cooked, cleaned and when I finally was healed enough from surgery I was vacuuming and scrubbing floors too. As far as not taking meds... I wasn't taking any! Even now I'm just on the endocrine therapy (and a diuretic because it makes me retain water). Remember this isn't forever. Just a few months. You can do that. I'm not saying I didn't have SE but you won't get them all. You'll figure out what they are so next time you can treat before it happens. OMG talk about heart burn and constipation with treatment #1. Next treatment I had the meds for heartburn and was doing Metamucil the night before I knew it started last time... so keep good notes.

Feel free to PM. if you need to talk more personal or have more specific questions about being triple positive. Also note there is a triple positive group thread. The folks are great but very chatty. Even I can't keep up with that thread all the time. Also note there are plenty of women that went through this at your age with kids. Do a search or start a topic and see who answers.

Gardengirl66

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 !

gatorgal89

I started my first A/C treatment on 2/3. I am really happy to see others sharing advice and stories. It makes it easier. Good luck to everyone. So far, the best advice has been to drink plenty of water. I really find this helps with the dull headache I had after the first couple of days. Today, day 5, no headache. One day at a time.

tangandchris

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))

lago

tangandchris the toe/fingernail loss is really rare. I mean lifting is rare and for it to get as bad as falling off is much less common. I always get the weird stuff. One thing I learned on this journey is not to assume something will happen. I thought I would get every SE and be puking my guts out and be in terrible pain after surgery. Well never used any puke pills because I never needed them. Never used any pain pills after surgery... they even took the pain pump away because I wasn't using it.

Don't worry about the nails unless the nail beds start to get sore. You might get some discoloration in your nails but the lifting and falling of is not common.

tangandchris

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

Hi all...I am ready to join your group of lovely ladies. I don't have a start date for my chemo, but I have met my MO. I still need my port put in. He also ordered a CT scan, Bone scan and an Echo Cardiogram.  All of those tests are being done next Wed. Are these normal tests to be ordered?  I will be having AC every two weeks x4followed by the neulasta shot the following day and then 12 weeks of taxol.  Another concern I have, that I will deal with, is I am a type 2, insulin diabetic.  Sounds like I might have an extra challenge there keping my blood sugars stable.  Antyone else dealing with other medical issues on top of this beast called cancer?  My good tboughts and prayers for all of my sister warriors!!!!!!!

dancetrancer

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. 

encyclias

grammyb,

I am a diabetic, although not using insulin, just pills.  I was given A/C chemo x4 every 3 weeks back in Oct of 2012.  This was after I had a MUGA scan to check my heart and a PET scan to see if the cancer had spread further than my breast and nodes.  I was not given steroids during treatment.  I was given a Neulasta shot or two during the course of my chemo when it was indicated by lowering white cell counts -- they just went down to the lower end of normal by the 3rd infusion, and bounced right back up.

Saying that a couple months with somewhat higher glucose levels wouldn't be harmful, my internist gave me the go-ahead to cheat a bit on my diabetic diet for comfort foods if I didn't feel like eating -- "just a small slice of apple pie, not the whole pie!" -- but fortunately (or unfortunately as I see it) my anti-nausea medicine worked perfectly so I didn't have the excuse.  That my internist's wife was a 10-year BC survivor was very helpful in his dealings with me and my MO.  He was vastly sympathetic and solidly on my side.

Good luck to you, grammyb!

Carol

lago

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.

princessrn

Hello everyone,

Lago: I am looking to your posts so much.  So generous with your information.  I live near you in NW Indiana. Hell of a winter we are having eh?!

I am triple+.  I have my MUGA 2-11 and see the RN NP on 2-14 for chemo info.  I have my first chemo 2-20 TCH and then Neulasta on 2-21. I am a nurse.  I work full time and I have three beautiful boys. I have terrific sister who is also a nurse who walks with each step.I am so grateful for her.

I have healed really well.  I had my port placed with my lumpectomy surgery since being Her2+ I knew in advance I would be having chemo.  It is healed well also and is no longer tender.  What I am having is some tenderness along the inside of my arm.  I notice a tight tendon like feeling and a pulling from my lymph node dissection scar.  Anyone else have that after surgery?  Did you do some thing to help it exercises or anything or did it not resolve?

Thursday was an emotional day.  I had my hair cut in preparation, maybe near 18 inches.  I needed a touch up and the damn practical part of me refused to go pay 100$+ and then lose it two weeks later!  I was NOT doing it.  So I controlled when it happened and I got to donate it to Locks for Love this way.  A two win situation as I see it. I have found some great wigs  and had them already. The people at work though I got this great new cut!  One hurdle down.  It is so small but by God seems so huge.

Also on background note.  I am the third woman in three years to have breast cancer in my office at work, case management, out of 30 women. I have the luxury of having the two before me sharing their information which helps.  One of the ladies had a larger amount of nodes removed and is having some slight lymphedema issues. What she found as she was going through treatment for that was that if you travel by plane, having a sleeve is a good idea.  Even if you do not have lymphedema, just a preventative thing.  I just wanted to share that with everyone.  I fly quite often and though I had only three nodes out, I am planning on pursuing getting a sleeve for travel, just in case.

Atiteca

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?

Brwneyedgirl

I too started chemo on January 31st, as someone else commented, the January group is well into their second rounds of chemo.  I am just working through round one.  So, I think I will be hanging out in this group too.  8 days from chemo 1.  I still have my hair, but I know it is going to go.  Have the wig ready. 

Njmom3

Hi formydaughter and welcome.  I'm glad that you feel this is the place to come and share your concerns and   feelings.  I thing we all share the same fears and apprensions.  Im also glad we are all in this together, as well as having our expert survivors who have been there before us to help us out as well.  Also welcome to all our new sisters as well!

I had my port placement yesterday, I went in very optimistic that it was gonna be a piece of cake.  Well it was no cake I ever want again!  It started off fine except for the darn IV not playing, but when I woke up in Recovery all hell broke loose.  I felt terrible, I kept thrashing around, I couldn't stop coughing. My somach hurt then I got sick and had issues with the other end as well.  It was awful and very embarrassing!  I just hurt all over!  They couldn't figure out what was wrong.  They did an EKG, chest X-day and an echocardiogram all which were normal.  They were going to admit me, they had four different people try to draw blood, after seven failed sticks they gave up.  By then I was feeling fine, and begged them to go home.  After a while they let me go and I feel fine except for my neck which is killing me!  The dr said I was thrashing around through the surgery, so obviously I had some weird reaction to the anesthesia. When I had my last two surgeries under general I was fine, this was just some sedation, apparently it was not for me.  I got there at 11 am and didn't leave till 6 pm! This is not the typical experience for port placement but apparently nothing about me is typical.  Hope chemo on Tuesday goes better!

grammyb

Thanks for the warm welcome everyone!!  I asked if I would  have a pet scan and my MO said if I was stage 3 he would order one, but not for stage 2, that's ok by me.  Glad the other tests are pretty standard.

Nancy

grammyb

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!!!!

Holeinone

Njmom, I had propohol, (sp ? ) ( the drug that Michael Jackson died from ) when they put my port in. It is more of a twilight anesthesia, also used for colonoscopy. 

It's possible that's what you had...normally a very easy drug & procedure, although I do remember being sore, I had mine placed one week after lumpectomy.

Sorry you had a reaction, find out what they gave you, so you will know...someday you will want to take the port out...

lago

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.

christyGA

Hey ladies, I received my first treatment of TCH last Monday. The first few days were good. On the 4th day i got severe stomach cramps. The nurse at the cancer center said it was the Taxotere. Has anyone else experienced these. I'm having to eat a BRAT diet to not be in pain. Any suggestions? I'm not nauseous so its hard not to want to eat. But the stomach pains are bad. 

lago

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.

christyGA

Thx Lago. Its more manageable today. Still bloated. But cramping isnt as bad. I have a treatment Monday so I'll ask them then. I've always had a sensitive stomach so I'm not surprised honestly! Thx again...

lago

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.