Starting Chemo in March 2014

NinaW

Way to go, Alli!!! Congrats on your squeaky clean nodes!!!

Ann, Vixen, I totally relate to your comments about Eastern medicine. I underwent both acupuncture and herbal therapy during my five-year marathon of infertility treatments in the pursuit of a second child. It would be so great if Western medicine embraced some of the principles of whole-body care that can be found there. In addition, it's amazing to me that a patient's mental health during this process isn't a routine part of treatment. It should be mandatory that you are assessed and treated by a therapist who is trained in understanding how the stress of illness and chemotherapy affects ongoing quality of life. Finding a balance and organizing your life around this new reality is a major challenge, and when you add the physical toll that treatment can take on your state of mind, I think having someone whose sole purpose is to help you manage those emotional aspects is pretty much as important as getting anti-nausea meds.

I met with the first of two MOs, and I absolutely loved him. I promised myself I'd get two opinions before starting treatment, though, so I'm just going to cool my heels until the second appointment on March 6. In the meantime, I'll get an echocardiogram, so that all of my ducks are in a row and I'm able to start treatment immediately after that second appointment no matter which MO I ultimately choose.

My final path report revealed that I'm weakly ER-positive, PR-negative, and very strongly HER2-positive, with a high Ki67 score. I've been spending my spare time researching the benefit of taking Prolia with Femara for post-menopausal women with ER-positive cancers. What a super fun way to spend an hour or two!

Wishing you all a great Saturday -

Nurselaura

I get my port soon, hope to get the drains out on Monday, and will start chemo week of March 10th. My MO does not recommend any scans prior except for the Muga. She says I am healthy and my lab work is normal. I am not sure how others have approached this topic. I feel OK with it because I am in a good state of mind right now, and if I had any news of mets I may not be as strong going into this aggressive chemo regemine.  Also I am aware that if I truly am negative for distant mets now I could get that any time, so how often would you get scans to rule this out? 

Nurselaura

Nina I am also weakly positive Estrogen 1percent . But MO says a positive is a positive. Also Her2 positive by Fish test.

Nurselaura

Hope you are healing well after the lymph node surgery. I chuckled when you said you went to school and got to focus on something other than cancer.  I have advanced Patho now and I am going to do my group presentation on Breast Cancer because I have learned so much about this disease since my diagnosis last month. So even in school I am focusing on cancer LOl!

Xrayalli

Today I took the plunge and had a close friend of mine cut off my long hair. I figured I had to get used to it being short before I have to shave it. It was a little traumatic for both of us but I have 3 scars and a ponytail now to add to my collection of war wounds. My young son said I looked great, my husband said it looks cute, I think I look okay. I am a long hair person, I am having a hard time with this. 

agness

Alli, I chopped my hair last week as well, into a chin-length bob. I suppose it's a style but it isn't what I would have chosen otherwise, this is to just start taking the edge off on any hair loss plus my hair was looking a bit straggly. What has been hard is when people who don't know about my diagnosis talk to me about my new hairstyle and for me it is a badge. It is hard to feel anything but glum in that context.

On NPR the other day there was an interview about "manufactured happiness" - I think I need to practice that.

On a totally existential/spiritual note, during my first acu tx after my dx I saw two visions - of a warrior that I perceived as a malevolent figure later chased away by a dragon. I've never had anything like that happen during acu tax before and even my practitioner didn't understand it. I looked up the symbolism and came across this:

"Dragon may be one of your animal spirit guides, in which case can mean-you are emerging into a new phase of your life where you may be taking more risks and be more vulnerable, but you're well protected, do more kinds of activities that bring passion to your life, you have a past-life connection to a time when Earth-based spiritual practices were predominant. spend time regularly meditating and you will receive valuable insights and inspiration."

cancerisnotmyhappyplace

Wow our group is growing!  Sad more are on this misadventure, but thankful we have each other to point out the dips in the road and pick each other up on the way. Alli- congrats!!  I am home recovering and thankful minimal pain with the node dissection. My drain is in a different spot but not bad. Now waiting for the patho report. 

I have been looking at cold capinformation. If anyone is going to use them let us know. I am interested because of the long term risk of hair loss. But I completely understand the concern about chemo reaching the target to eliminate brain mets. Scary stuff. 

Good news- we found out we are moving to Hawaii this summer.  My reward for getting through tx and reconstruction is starting over in paradise!  Gotta hold onto that. 

Xrayalli

Cancerisnitmyhappyplace-so glad your pain is minimal. How exciting you get to live in Hawaii!  I think the cold caps sound intriguing but the scalp mets is scary, why risk that. It also sounds very cumbersome to use, you need helpers, dry ice, coolers, etc. I

Agness-I think that's cool about your vision, I have a reiki session every couple of weeks and my practitioner has visions and helps decipher their meaning, the last few times I've been I have had my guardians with me who then follow me into surgery, I am certain. 

I have a busy week ahead, appointment with MO to go over lab results, tissue expansion and wig shopping. Happy Sunday, everyone

Jmenchaca78

Hello everyone. I'm glad to see a March 2014 thread. I am 35 years old and was diagnosed with IDC in December. I had a double mastectomy in January and I start chemo on March 7th. I'm doing 4 treatments of taxotere and cytoxin 3 weeks apart. My MO said that I can do this without a port which is great. I'm pretty nervous but I know I'll get through it. We all will get through it. I also am contemplating the short pixie type cut I think it would be fun to do some crazy style. When do ever get the chance since it's gonna fall out anyway! Anyway I'm excited to be on this thread so we can all share our experiences as we go through it.

CancerVixen

Good Afternoon March Chemo Warriors!!!!!!!!!

I really enjoy reading all of your posts.  I wish I could respond to all of them but dont always have alot of time to get on the computer.  Since the group has gottten on the topic of spirituality have any of you been seeing repeating numbers?  When my mom died 9 1/2 years ago every day for months I would see 4:44 on the clock. Could wake me up in the am or in the afternoon.  Well about a month before my recent diagnosis I started seeing it again. Here is what I found on the internet:

The spiritual meaning of 444 is one of many repeating numbers
designed to get your attention and serve as a wake up call from your
spiritual guides.

444 is a very powerful number. It means that your angels are by your
side and want the very best for you. They are asking that you pay
attention very carefully to the signs that you see around you.

This may come in the form of a music song on the radio, an Earth
angel saying a specific phrase to you at just the right moment, or
seeing certain numbers or words on a license plate or road sign.

The angels will use whatever way you prefer to get your attention.
They ask that you just tell them which manner of communication works
better for you. It may also be seeing certain animals such as a rabbit
or a bird repeatedly, such as a cardinal to acknowledge that you are
indeed heard by the angels and they are giving you guidance in your
everyday life through your thoughts and daydreams.

444 itself refers to an angelic presence surrounding you and taking
comfort in the protection afforded you from the angels. Your angels are
always near you, all you have to do is reach out to them with a thought,
a thank you, or a wish or a prayer. No message goes unheard. You just
may not get the answer in the form you expect.

     

megomendy

Jmenchaca, we'll be starting together on the 7th. Different meds, but still. Hope we both do well.

I just got a scary thought, that my hair will start to fall out while I'm at work! I guess I just imagined it happening at home, with my wig/hats/scarves nearby. I'll have to be prepared. Or shave it ahead of time.

megomendy

Alli, can you tell me more about Reiki massage? Related to cancer.

Xrayalli

Megomendy- I don't know what others do but I had my friend check me out after my diagnosis and she realigned my chakras, infused me with good energy, removed what she could, validated the presence of my protectors, that sort of thing. After each surgery she helped with relaxation as well as sore and swollen areas. She's a close friend of mine so for me it's almost a counseling session, lol. From what I understand, each practitioner is different in how they interact and each patient has their comfort levels as far as touch and what they are willing to allow. 

CancerVixen- I like your post about numbers. I was just talking about that sort of thing because the morning of my most recent surgery I realized it was my grandmothers birthday. My mom didn't realize it and I did not know it when it was scheduled. I definitely felt like that was her doing. 

Generation3

Hello March Ladies,

I'm yet another newbie! I see that a few of you are in the medical profession, I am an RN. I am 56 yrs old with 2 daughters age 22 and 15.  Got my IDC dx 1/13/14. To be honest I've been expecting this because both my Mom and maternal Grandmother had BC. What really took me by surprise was that I didn't really catch it as early as I would have thought. Because of my family history I have been very dilligent in getting mams annually since age 40. About 18 months prior to dx I found a pretty large lump by my nipple. I immediately went to MD, had a diagnostic mam and U/S which showed a cyst(my first one). About 6 months later I had another lump, did another mam and U/S and it showed multiple cysts. 11 months later I felt the cyst that was at 8:00 right breast was getting bigger. My MD did an exam and discovered not one bigger one but 2 side by side. With that info they finally found it on mam and/or U/S. By the time I had lumpectomy my sentinel node had a 1cm cancer in it. Second node has no Ca. Now I'm just waiting for surgery to remove the next level of axillary nodes and to place my port. I did not get clean margins but my surgeon wants me to start chemo first, then go back in to clean things up. This will give me time to decide if I want another lumpectomy or MX. I'm also waiting for BRCA test to come back before making any decisions. I have no appt yet for chemo but am anxious to start before this CA spreads any further. 

Alli, thanks so much for starting this thread and thanks to those March grads from years before who have written as well. It gives me hope for the future. I'n not really looking forward to this experience,  but I couldn't be going through it with  a nicer group of women who support each other.

badger

hi ladies, popping in with encouragement from four years out.  Had six rounds of TC chemo - taxotere and cytoxan - from March to June 2010.  The first infusion is the scariest because you don't what to expect. 

Donated my long hair to Locks of Love before first tx and got a cute free bob.  That started coming out 14 days after first tx.  It didn't hurt but I was shedding like a dog in spring and there was hair everywhere so I had it buzzed ultra-short at the salon.  Stylist said not to shave it off (nubs) so I didn't.  I went commando (no wig, no scarf) at work but wore a baseball cap when I did errands or walked around town.  Didn't want to sunburn my head or court questions from curious children.  I didn't go completely, shiny-headed bald.  There was always a swirl of fine pale newborn baby hair.  People wanted to rub my head - weird.  By Sept, it had grown enough to look like hair I may have styled that way on purpose.  I've kept it short as it's convenient and flattering.

You're already gotten some great advice so I'll just add a couple things:

If you can afford a small splurge, get a satin pillowcase.  It will feel so good on your tender scalp.

If your mouth feels hot, try popsicles or italian ice (I liked lemon ice) for cooling relief and hydration.

This group will be so much help to you!!  Lots of love and gentle ((hugs)).

agness

I hope your Sunday has been going well. I have been pinning items to a private board on Pinterest, planning on how to get thru this miserable treatment.

One thing that someone I know posted incidentally to Facebook is this nutrition drink. She spent a lot of time researching and said it was the best rated of its type of  product. I was considering getting some to help keep my nutritional intake up even if chemo won't let me keep much down.

http://kyleahealth.com/product/total-living-drink-...

I also have been looking into meal delivery services, as I'm our main chef and I have to keep my kids fed as well. The service is vegan but looks good and vegan works for us as my partner is largely vegetarian, one kid is dairy sensitive and everyone likes vegetables at my house.

Anyone have other nutrition/meal ideas?

Ann

Lovemyboysandlabs

Hi everyone, I am starting my chemo ride on March 3. I am anxious. I am looking for any advice as to what I should bring with me to snack on, that would make me comfortable, etc. Cancervixen, yours sounds similar to what I will be getting. I am Stage 2 (or stage 3-- they think 2 but don't know 100% for sure because I didn't have surgery first). I have 2 tumors and 1 lymph node, HER2 +, ER PR-. I should be getting mine for every 3 weeks for 6 cycles, so 18 weeks. The hair loss has me kind of freaked out, more than I thought it would. Small price for your life, but I just don't even know where to begin with wigs etc. I did buy some cute scarves and hats, but I don't know.

We are all in this together!

Lovemyboysandlabs

Oh, and I just read the post about the angels--one visited me in my car on the way to work. I love Duran Duran--they've been my favorite band since I was 15. I hadn''t been listening to music at all, and when I turned on the radio their song What Happens Tomorrow came on. I had a shiver go from the top of me to the bottom. You probably don't' know that song, but you can Google the lyrics. It is a good message for all of us here.

Melrosemelrose

Wishing each one of you March 2014 chemo gals easy times in the Big Girl Chair aka BGC and minimal side effects.  I know that the anxiety is high for many here.  So much information coming at you about your pathology, possible side effects, the hair loss and what you may feel like.  Just remember you are not alone.  You will not be self administering that chemo to yourself but will be carefully monitored throughout the infusion process.  If you feel anxious the day of the first chemo, it's okay.  I was offered Ativan in my pre-chemo IV drug cocktail and readily agreed to have it during all 6 rounds of Cytoxan/Taxotere infusions.  Once you are home after the infusions, don't ever think that you shouldn't contact your onco after hours or on the weekend if you are having side effects that seem to escalating or you are a little frightened the side effects.  There is always an onco on call to handle after hours and weekend calls so don't think you are bothering him/her.  It is part of the onco's job to help you through the side effects and unless you let your onco know that you are struggling, you can't get the help that you need.  Yes, if family/friends offer to help you, please let them whether it be to take you to the infusion, to go shopping or to bring groceries/food to you.  Remember, you don't have to be "Super Duper Woman" here; just plain "Super Woman" will do.  There will be days that you feel good and other days when you don't feel so good.  There can be times when the tears just seem to flow for no real reason or you feel a little blue.  It happens; try to be easy on yourselves.  If you have questions about the chemo process or side effects, please post them.  I know that some of the veterans will find this thread and help see you through to the other side.   Just keep thinking this.... " I can do this..... I can do this....." and after the first infusion.... say out loud..... " I am doing this...... I am doing this!!!" HUGS!!!! 

Lovemyboysandlabs

My Oncologist said I will be there for 5 hours the first time. I thought I would be there for a couple of hours. Yikes. 

Is this standard, or is everyone different?

Melrosemelrose

The reason you might have been told that is because the first infusion is usually run at a a slower drip plus there may be time spent with the infusion staff and/or your onco to help "walk" you through the process. As I recall, my first infusion lasted that long.  The ones after that were a little shorter but I decided from the beginning that chemo day was my day at the infusion center and having patience while there will go a very long way with the infusion staff and helping yourself not to build up too much anxiety. 

FOR THOSE HAVING FIRST TREATMENTS of CYTOXAN/TAXOTERE:  Hope this helps.  The first treatment may take longer because you are still learning the infusion center procedure.  You will probably get weighed and then your blood work may be taken to determine if your WBC is high enough for the treatment.  I also see my onco the day of my treatment and before I have my treatment.  So be prepared for things to take a little longer.  You may want to take some snacks/sandwich because you may get hungry.  You may also want to take a blanket/jacket to keep you warm during the treatment unless the infusion center has warmed blankets for its patients.  I'm lucky that mine does.  I usually wear the same outfit--- leggings & long sleeve knit shirt & men's undershirt--- so I can tell if I've gained weight between treatments.  I have my Taxotere infusion first and then have the Cytoxan infusion second.  Make sure you drink water/eat ice during the treatment to help prevent mouth sores and to start flushing that chemo through your body.  You will sit the entire time during the Taxotere infusion since you are icing.  However you definitely can get up and walk around with your IV pole during the Cytoxan.  That means don't curtail your fluid intake thinking that you can't use the restroom because you can definitely get up to take a walk or go to the restroom!!!!  Just ask the infusion nurse to unplug your IV pole from the electric plug.  My onco ordered Ativan in my IV along with the usual IV meds which helps me keep calm during my treatments. 

 After the first treatment, keep drinking the fluids to help flush the chemo out of your body.  I know you may not feel like eating but try to eat 5-6 small meals every day.  A fed tummy is a happy tummy.   Here is the name of two books that helped me figure out what to eat during chemo:  Eating Well Through Cancer by Holly Clegg and Gerald Miletello, MD and The Cancer Fighting Kitchen by Rebecca Katz.   The first book has tips, recipes, shopping lists and is divided into what to eat before you have chemo, what to eat if you are having different types of side effects.  The second book has great recipes and pictures.  I bought a few food magazines while in chemoland to help stimulate my desire to eat.  I like others, just didn't feel like eating and didn't want to eat 5-6 times a day.  But I did eat small meals 5-6 times a day and ate not for comfort but the fuel and nutrition for my body.   If your side effects start to escalate, call your onco to get some help asap.  Doesn't matter what time of day it is or what day of the week it is, just call.  They really want to help you get side effects under control and expect you to call. 

GOOD LUCK ON THE FIRST TREATMENT!!!  WISHING MINIMAL SIDE EFFECTS FOR ALL!!!!  YOU CAN DO THIS.  Once you get through the first one, you

Xrayalli

generation 3- as a mammo tech I feel your pain, every year we talk about your family history, you're doing your job by coming in for annual screenings and you STILL didn't catch it until it had gotten to the lymph node. Imaging tools are great but in my case as well as yours it didn't pick up the invasive stuff quick enough. Welcome to March Chemo!

Badger-(half my gene pool is from WI) I love your advice about the satin pillowcase, thanks so much for your advice and helping out us newbies. 

Lovemyboys-welcome to you also, we will be going through this together. 

Melrose- thank you so much for posting all this valuable information, I will be rereading it. I can't wait to have my chemo teaching session, hopefully this week. Anxious to get started with this phase. Surgeries are behind me, chemo and reconstruction still ahead of me. 

Question for any, my MO is having me do Taxol first, then Adriamycin and Cytoxan. He says by switching it around, (lots of others do the Taxol after the AC) there has been shown to be a 30% improvement in survival and risk of reoccurrence. Anybody heard this? I am glad to try anything, 30% is a great number. 

megomendy

Alli, I haven't heard that, reversing the taxol and AC! And I am doing the opposite, AC then taxol. Do you know where that info came from?

Xrayalli

Yes I do. My doctor follows MD Anderson in Texas breast cancer protocol. I hope I don't start a riot but I completely trust him. Do you have a start date yet? Sorry if I asked already, so many posts I've read, lol. I don't have my exact date but being anal retentive I hope to start March 13, a week earlier than I had planned.

Melrosemelrose

I wrote this a while ago but I hope it makes you feel a little less anxious about the hair thing. 

HAIR  (I know that this topic is not an easy one for us but here we go!!!)

As each of you are well aware of, hair is affected by the chemo.  this is just a very quick read on hair loss just to give you a brief idea of what to expect.  Handling the hair loss is very personal and so the decision is up to each of you as to if and when you cut your hair and how much you cut.  There are no written guidelines as to how much to cut or when to cut.  It is what you feel the most comfortable doing.  Whatever you decide to do, take control over the hair before it takes control over you.  I know you won't understand that statement now but you will later.

What to expect:  Most people experience scalp pain about a week after the first chemo round.  The scalp can become very sensitive, tingle, itch and even be sore.  The hair loss may begin within 14 days after the beginning of chemo.  It will come out a little at first and then the hair loss will increase. Please be aware that when you wash your hair when you are in the shower, you will become very much aware of the hair loss.   

What to do:  Once the hair loss increases, the hair will be everywhere.  I used a lint roller to get the hair off of me, my clothes and my pillow and bed.  This is the time when most decide to cut the hair short or have it cut very very close to the scalp.  If you decide to shave your head, please be careful so you don't accidently nick your scalp ( have to minimize the possibilities of infection).Just remember the decision is up to you as to how much to cut because it is a very emotional time.  No matter what you do, just remember you are still beautiful no matter how much hair you have on your head.  There are lots of options for head coverings--- hats, scarves, Buffs, wigs, etc.  It's just a matter of personal choice.  You can contact the American Cancer Society and attend a Look Good Feel Good session to get a make up session and can even get a free wig.  Also the TLC catalogue is a great source for headcovers, wigs, etc.

There is a chemo board thread called Hair, Hair, Hair that can also be a great support and resource for you. 

community.breastcancer.org/for...

The rest of the hair:  Loss of the eyebrows, eye lashes, leg and arm hair and down south can also occur.  Sometimes it occurs during the chemotherapy or after the completion of chemotherapy. 

My short hair story:I opted to cut my short bob to a very very short boy haircut about 2 1/2 weeks after my first treatment because I got so annoyed with the hair everywhere. I was the one who took control and made five little ponytails of the longest sections of my bob and clipped those ponytails off myself.  It was a very liberating experience for me since I took control and did the cutting myself.  My husband used his trusty electric clippers with a 1 inch guard to clean up the sides and back so I now had a cute short boy pixie cut.  I opted not to shave my head and glad I did not.   I had a thin veil of hair with stubs growing.  I slept on a polyster satin pillowcase which did not catch my hair stubs as much as a cotton pillowcase did.    I'm glad that I did not shave it since some of the gals on one of the chemo threads I'm on wished that they had not shaved their heads since they had stubs growing.    It was my decision before I started to have chemo to not shave my head close because I wanted to see if the chemo would take out all of my hair and felt that the transition from having waist length hair in February 2012 to being bald by May 2012 would be too much for me.  I always viewed the hair situation as my personal science experiment.  FYI:  I have not trimmed or cut my hair since May 2012 since it has fortunately grown back evenly, a little wavy and now 7 inches long.  Yes, it does take a while for the hair to grow back and mine has taken a little longer to come in because of the Herceptin infusions..

Wishing each of you the best!!!  You can do this.... because you are each stronger than you know!!!!

megomendy

I start 3/7 but I can investigate further and email my MO. I believe AC is tougher than Taxol, so I was looking forward to "getting it over with".

megomendy

http://forum.tnbcfoundation.org/attention-newbies-...  

I found a link to the article, but it's from 2011. Anyone have any more info re: this?

Xrayalli

Meg, great job finding that article! I hope more people chime in on this topic....

Melrose, i really appreciate your hair discussion. I am now wondering anout the 1" cut rather than shaving right to he skin, sounds like it might be a little more comfortable.

CancerVixen

Hi Lovemyboysandlabs, I am stage III right now because it has spread to the lymph nodes.  MO said if I finish chemo and get to surgery with no sign of cancer it will go down to stage 2 so that is my goal.  I am having my first treatment this Wednesday and they told me I will be there for 8 hours!  Since I am having 4 drugs they give each one slowly and watch for side effects etc.  My hospital (Duke) has an Aesthetics Center.  They give BC patients free wigs and scarfs and hats.  I stopped in and they were so wonderful of course they deal with this every day.  Then I ventured out to a wig store in my neighborhood and the same experience.  These women are dealing with cancer patients everyday and are very kind and helpful.  I feel alot less stressed now that i have the wigs. 

xrayalli - I had my yearly mammo in August and nothing showed up.  By January I had a lump and spread to lymph nodes.  Being that I had cancer previously I think that they should have done an ultrsound as well and maybe it would have been caught earlier.  It is something I am going to petiiton for all women once I am finished with treatment.

Xrayalli

An ultrasound should be done for a palpable lump asap. A whole breast ultrasound as a screening tool is not usually feasible. It takes a really long time, for one thing. US is best for a localized problem or area of interest and does not pick up calcifications. Did you feel the lump and go in right away? If so and it had already spread to the nodes then you must have had a very aggressive type. I am frustrated that even as a mammographer I had to ask for my calcifications that I saw be magnified. Only then did someone think i needed a biopsy. We are the mercy of who is reading the mammo, are they in a good state of mind? Are they tired? In a rush?  What we want ideally is something called digital breast tomosynthesis. It gives more of a 3D image of the breast and is performed like a mammo, facilities are slowing getting this technology.