Starting Chemo in March 2014

Xrayalli · February 2014

Is anyone here on the chemo regimen FEC? If so, how does it go, every 3 weeks? My doctor is possibly switching me from Taxol/Adriamycin/Cytoxan due to being luminal A. He is consulting with MD Anderson about my case, apparently the location of my tumor was rare, and he wants to see what they would do if I were their patient.

Getting a bonus skin tag removal next week with my last tissue expansion next week, I love my plastic surgeon!

Maggiemay1220 · February 2014

Alli, my surgery was the 12th. I was pleasantly surprised by the pain level of the breasts. I can raise both arms over my head so that came back quickly. I think my swelling is almost gone. I don't care for the side breasts that I have but hopefully that will go away. The numbness is the biggest annoyance. The pain that I was whining about just started a day or so ago. I am glad the wig shopping went well. My girls, 6 & 8, are going with me to help pick one put. It may take awhile!

CaliKiwi · February 2014

Alli - I will be doing FEC-T (or D). Oncologist has told me it'll be FEC for the first 3 treaments, three weeks apart, then Taxotere for the last 3, three weeks apart for a total of 18 weeks. My port goes in Monday and I hope to have my first chemo Wed/Thurs.

Macintx · February 2014

Alli, I had fun wig shopping too! About the AND, since you had a significant amount taken out like I did, make sure you do any exercises they tell you to do to avoid getting cording. I didn't know I was supposed to be doing any exercises because all my BS said was to just use my arm to keep it moving, and I didn't really start til my arm started feeling stiff. Now I've got cording and can't raise my arm higher than 90 degrees when it is held out straight. So on top of chemo, I get to go to Physical Therapy (a lymphedema specialist) to try to get my range of motion back in that arm. I can feel the cording all the way down my arm, and it hurts to use it in certain ways. Fortunately I can use it pretty well when it's bent, but reaching for things is hard. FYI- afternoon of day 2 and still no side effects from yesterday's chemo!

cancerisnotmyhappyplace · February 2014

It is encouraging to see the progression for everyone as plans are made for starting chemo. I just got the patho report from the lymph dissection and it put me over the edge into stage 3. Not what we wanted to hear. Now begins the scans but will meet with MO in 2 weeks to plan for chemo. The stress and anxiety is getting to us with whether to work or quit (I was going to in a few months for our move), finishing school, and moving. One day at a time a popular saying, however there is so much that needs fo be done. Deep breaths and tissues.

CaliKiwi · February 2014

So sorry about your pathology results cancerisnotmyhappyplace. Sounds like you have far too much on your plate, sending you a big, virtual hug.

megomendy · February 2014

Agness, my port is being placed by the interventional radiologist. They do it with twilight sleep, which I am nervous about. I asked my surgeon if he would put it in during my lumpectomy, but he wanted to wait until I saw the MO and let her make the final decision. Annoying! I'm getting it next Wed. and start chemo Fri. Hope it's not too sore.

A few people told me how they bought a wig and only wore it a few times. I have no coverage thru my insurance, so I was in Manhattan and just happened to walk past a wholesale wig store! I went in and bought a human hair wig for $75! Good deal, esp if I dont wear it much. I have two weddings so I def need to wear it then.

I had my echo today. It was so nice to have something done that was easy and painless! Just a lot of gel on my body from the sonogram.It was actually pretty interesting because she showed me the screen as she did it and pointed out things.

Maggiemay1220 · February 2014

Cancerisnotmyhappy place, not only one day at a time, one hurdle at a time. My brother passed away unexpectedly 2 weeks after I was diagnosed. Sometimes I can only do hours at a time.

momand2kids · February 2014

Just dropping in to say "you can do this" I finished chemo 5 years ago tomorrow--- and it is a distant memory. Parts are hard, others are easier than you would expect. Just be kind to yourselves---- you will get through this....

Good luck to all!

Lovemyboysandlabs · February 2014

Hi all! I went wig shopping today too, but they had ready to go wigs and they were mostly synthetic, they didn't mention anything about ordering one. About 150-200 was the average cost. Does that seem like a good wig at that price, or should I be spending more? I had never stepped foot in a wig shop before, so I have no idea what I am doing. I wonder if there are nicer places in town, I am going to do some searching. The wig I tried was okay, the girls that came with me liked it a lot, but I want to make sure it looks real. I still go back and forth between human hair vs. synthetic. I felt some of the human hair wigs today, and they felt so nice, better than my own hair for sure. Anyway, can anyone tell me their thoughts on the wigs? Any particular brands that are better than others?

I am going in at 10 tomorrow for my port. It is outpatient surgery, they said it's quick. Chemo starts Monday. My class was about an hour and she did talk about a lot with me, and answered my questions. She advised to bring some kind of candies or gum because the taste can be bad for some people, also recommended snacks and lots of water.

For those of you that are shopping right now in anticipation of losing the hair, I highly recommend headcovers.com for scarves and hats. I just ordered some things over the weekend, didn't pay extra to have them rushed, and they came already. They have a huge selection, the prices are reasonable, and the stuff is really cute. I even got a scarf with a matching bag! I wasn't sure if I would like the scarves on my head, but after I put it on I actually liked it! They have a lot to choose from. Someone suggested I go there and I am happy I did. I will probably order some more things.

CaliKiwi · February 2014

I haven't been anywhere to try on wigs yet. I'd have to drive to San Jose and don't feel like heading there this week! I have been looking on wigs.com and have seen a couple that I like, but it's hard ordering off the internet! I am wondering if my insurance will pay for anything, but I have no idea how to even start that conversation with them. I did order a couple of the 'abbey caps' off amazon. They look nice, I even got one with sequins so I could feel a little more 'fancy', here's hoping that they are ok!

I'll be really interested to hear more about everyone's experiences with different wigs, and of course pictures, if anyone feels like posting them!

Nurselaura · February 2014

So nice of you Macintx for posting the link to chemo class for kiwilady to watch. It is wonderful to see us helping each other in little ways such as info, tips and education, to help us get through the day, week or each treatment and procedure. I am so happy to have found this site. I am waiting for the port and then chemo AC-TH. Keep fighting the fight ladies!

Laura

jbdayton · February 2014

Kiwilady - My oncologist wrote me a prescription for a "cranial prosthesis". Insurance will not cover it without that wording. Most wig shops will submit the insurance claim for you. In fact the shop I used called insurance and got the verbal approval while I was still there.

agness · February 2014

if anyone wants to see my Pinterest board that I've been working on collecting items for chemo PM me. I'd love to see other's boards as well.

Xrayalli · February 2014

Wig shopping- you should be measured to have a correctly fitting wig or it will be uncomfortable and/or look funny. They said the synthetic ones are just fine, but you have to be careful with blasts of hot air, steam, etc, it will fry the wig and ruin it. The price range given above was on the cheap end of things but nice ones can be found for that price. With everyday wear they last 6 months, that's what I was told yesterday. The one I ordered was around $180.

Really hating this swelling under my arm, it feels like there is a tennis ball under there. I actually have good range of motion with it but it's so uncomfortable. I've been icing and taking ibuprofen....any ideas from others? It's only been 9 days since surgery, though.

Cancerisnotmyhappyplace-so sorry about your pathology, let's hope they got everything with the surgery. Keep plugging away, it's all you can do and you are strong. Good luck to those starting chemo soon, I will be week after next.

Chemo teaching and echo tomorrow.....more things to check off the to-do list.

megomendy · February 2014

Kiwilady, I didnt know what an "abbey cap" was and looked on amazon. They're adorable. I want one! Or 2...

http://www.amazon.com/s/ref=nb_sb_ss_c_0_10?url=se...

CancerVixen · February 2014

Hi everyone! Im so happy to say my first chemo treatment is finished!! I was at the cancer center for 12 hours yesterday! First they started with Zofran for Nausea, Decatron a steroid for swelling and then they started with my chemo regimen. The first drug i received was perjeta, then herceptin then taxotere and then carboplatin. The only hiccup was the Decatron which makes my heart irregular and my pulse race. All in all it was just very tiring and exhausting. I came home feeling fine but did not sleep well last night. I woke up with nausea at 1:30am and took some Zofran. Then went back to sleep for 3 hours and woke at 4:30 still feeling queasy. I realized my stomach felt empty so I made a peanut butter and jelly sandwich and that seemed to help. I am taking the anti nausea medicine today on schedule even though i havent felt any. Im trying as hard as possible to keep that to a minimum because nausea can give me severe anxiety and panic attacks and I am not trying to go there!! I went back to the hospital today to get the Neulasta shot. I am a little nervous about this as my friend had severe bone pain that was so bad she almost stopped taking it. I heard about the claritin so I did take that last night and will again tonight. Hopefully it will help. Right now the worst part is the severe fatigue so I am going to leave you all now and write tomorrow.

CaliKiwi · February 2014

Meg - I ordered 2! They should get here next week, I hope they are as cute as they look in the pictures.

CaliKiwi · February 2014

CancerVixen - thanks for letting us know how it all went. 12 hours! Oh boy, that is along time. Hope you start feeling better soon, keep us posted.

Lovemyboysandlabs · February 2014

I am on the same cocktail as you CancerVixen. 12 hours, yikes! I was told 5. I had the port put in today, pretty easy. Just tired from the anesthesia, so I can only imagine what I will feel like next week.

I found a wig shop that is owned by a breast cancer survivor, so I am planning to go there tomorrow. I think that will be a better experience. Thanks for the tips.

Maggiemay1220 · February 2014

Alli, is the swelling to the side of your breast?

Today I had the echo and Doppler in prep for the port. They will put that in on Wednesday then Chemo on Friday. Has anyone had their first round of AC yet?

Another silly question, does anyone know how many CC's usually go with a cup size?

agness · February 2014

I met with a naturopathic oncologist today. It was good to be able to speak about nutrition, Chinese medicine/acupuncture and typical breast cancer treatment and not have have his eyes glaze over or give me blank states.

He told me to eat a mild diet, similar to as if you were recovering from a stomach virus from the day before treatment until two days afterwards. He also advised me to ice my hands and feet during treatment. He hasn't seen permanent hair loss with TCH treatment but he was unfamiliar with pertuzamab (sp?).

I had him look at that nutrition shake and said no, as it had nutricruticaks that would interfere with treatment or cause tumor growth.

All in all I was pleased and it was a relief to have someone to discuss my ongoing health issues with - including through treatment - and have them totally understanding and knowledgable.

Now I'm looking into cold caps and I realize that there are some serious logistics involved. I have a couple weeks to sort it out.

Tomorrow is my weekly acupuncture treatment and I am so looking forward to it. The naturopath said to absolutely continue with weekly treatment throughout this breast cancer voyage.

CancerVixen - so sorry you had such a long day. I hope you get some good rest in the coming days.

Xrayalli · February 2014

Maggie, I can get back to you on the cup size thing, I have it written down. My swelling is right where the lymph nodes where, the side of the breasts and my underarm.

megomendy · February 2014

Agness, so this doctor is an MD? That is really great. Is he your treating MO?

Generation3 · February 2014

Hi Ladies,

I've been waiting for my BRCA test to come back before starting chemo. The MO called today and it was normal YEAH!!!! My ovaries and fallopian tubes get to stay nestled in my soft fluffy abdomen. I also get to keep my left breast! I get my port put in on 3/11 and start chemo on 3/13. I'll redo surgery later after chemo. Didn't get clear margins but I had extensive LVI so my surgeon wanted to start chemo right away. This will give me time to decide on either another lumpectomy or MX. I'll be asking you all for advice later.

Tomorrow my fiance(partner of 16yrs and father of my 15yo daughter) are going to get a marriage liscence. We've been talking about it forever but now it seems to be a priority. I'd like to get married while I still have hair!

Maggiemay12 there is a plastic surgery site at www.ascbs.org/size_of_implant.htm that describes how to figure that out. Basically a c cup is about 330cc.

Alli I'm sorry that you"re so sore. I just had a sentinel node and that was really sore. Yours is worse i'm sure. Ice and ibuprofen should help. The other thing that I did was to have one of those small travel size pillows with a cool satin pillowcase on it and put it under my armpit for the coolness and comfort. I would walk around all day with that in place. Hope you feel better. Sleep well.

Maggiemay1220 · February 2014

Thanks girls, I was previously a D and am now thinking a B1/2 or C would work. I hate the TE's so could care less at this point if I get many more fills. They filled me quite a bit after surgery and last Friday was my first official fill. I was rock hard and with the swelling felt like I was in an inner tube. After getting my chemo plan I am not too thrilled that I will be at least September before I get rid of these buggers.

My oncologist will be giving me a shot to keep my overies shut down after chemo, anyone else talking about this?

Generation3, congrats!!

cancerisnotmyhappyplace · February 2014

cancervixen- sorry your day was so long but sounds like you are managing your symptoms.

Alli- my ALD was 7 days ago, my drain finally started to slow but still too much to take out. Some axilla pain but more nerve pain in my arm and the fun "skin on fire" pain. Tried to decrease my narcotics but decided to get the refill and manage the pain. Sorry you are having trouble. Like every other part of this process our individual experience can differ.

I have 2 weeks until MO appointment. So healing, expanding, scanning, and homework are my immediate plans. Good luck to everyone starting chemo soon.

agness · February 2014

The doc I met with today is a naturopathic doctor (ND) with a specialty in oncology. Here is where you can learn more about this newer specialty:

http://www.oncanp.org/nat_onc.html

I'm strategizing a more conservative (towards body integrity) approach towards my axillary nodes. I have evidence already of spread there and I also have an intra-mammary node behind my breastbone that they won't touch. Since ALND is mostly for staging purposes and it won't change my treatment course (which involves the full trifecta) we are going to see how my malignancy responds to the TCHP and approach the lymph nodes based on clinical evidence first. We spoke with a surgeon who was on a study regarding taking this approach and he agreed with our reasoning. It all will depend on how my pre-surgery chemo rounds go though.

Xrayalli · February 2014

Maggie-I was a "D" and told my doc I wanted to be a large "C". Next week I go in for my last fill and that will make 720cc that will be in my expander. He puts 60cc in at a time, I had 3 fills, one to go. I guess I came out of the OR with 480cc. This thing is so incredibly uncomfortable, really stinks we have to wait until after chemo to have the implant put in! I will ask my oncologist about the ovary shut down thing you mention...

Cancerisnotmyhappyplace-my axilla drain came out after 3 days, what a relief that was.I also have that awful "skin on fire" feeling, and I am trying to minimize the pain pills but I still have to take them sometimes.

Agness-the axilla node surgery was the one decision I struggled most with. I fell into a gray area with having vs. not having it. Since I wanted to try to get out of radiation and I felt I and my MO really needed to know how many nodes had cancer in them I went ahead with it. The surgery post-op is sucking right now, I admit. But it was a weight off y shoulders to know that out of 19 nodes total only one sentinel node was affected. I wish you luck and guidance with your decision, it was a tough one for me.

NatsFan · February 2014

For info about implant sizes and fills, there's a thread in the Recon section called Breast Implant Sizing 101:

http://community.breastcancer.org/forum/44/topic/7...

A user named Whippetmom who started that thread has become a good resource on this issue. I had staged DIEP recon (skin-sparing BMX with TE to start, then a DIEP when active treatment was done) so I don't know much about implants, but from being on BCO for a long time, I know that thread and Whippetmom get referenced a lot as providing good info.

Xray - I also went smaller. I'd been a large DD and told my PS I wanted perky B's - and that's exactly what I have. I'm very pleased with my decision - that's why I was able to begin running a few years ago. Before, no sports bra in the world could contain the "girls". Now any off-the-shelf sports bra fits beautifully, and I can run down the street without making a spectacle of myself.

Starting Chemo in March 2014

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