Starting chemotherapy March 2017

Prue_pueng

MommyErin - Congratulations for your good news!!!

Tara17 - It is now entering to rainy season. Now I can enjoy a bit of cooler weather. First few days of chemo I had hot flash during the night time.

Tara17

dlk53 --i myself did not have an ER positive tumor so havent done any reading about oncotype and dont have any personal insights to offer . One suggestion might be to search the forum for oncotype topics and post there---the wonderful thing abotu this website is that there are fora dedicated to each topic --so i am sure there is a forum discussing oncotype results ---just reading the posts can be very informative and helpful

I would just say that chemotherapy is not as bad as feared --nowadays the doctors and nurses do a very good job managing all the side effects. So dont refuse chemo just based on a fear of chemo going in, but educate yoruself about all the pros and cons.

Definintly seek out a forum discussing oncotype to better analyse the pros and cons of your situation ---wishing you all the best, i do understand how difficult it is to analyze all the pros and cons and make the right decisions

Tara17

lordhelpmetoo ---we shall keep your surgery date on our list and shall be thinking of you . It really helps me to be a part of this group of ladies --no matter how much one's own friends care, they arent going through this ---this group of ladies here feel like my friends , friends in arms i should say, and i am rooting for each one of us so that the entire group will be on the other side of this --that will be so nice!

Tara17

mommy Erin --thank you for keeping me in your thoughts for tomorrw -- i so appreciate it . Thanks for letting us know the PET scan schedule --shall keep that in my thoughts and will look forward to another good report. I do hope you that you are able to resolve the emotional limbo feeling and move on confidently with trearment

Tara17

Prue Prueng --glad you have some cooler weather to enjoy --that will definitely make the hot flashes easier to tolerate . Wish you all the best for this coming week!

BringOn2017

Dear MommyErin,

So glad you got good news! The surgery is doable! I've just had my bilateral mastectomy 2 months ago. I had dcis on the right side and columnar hyperplasia on the left side. Yes I cried many tears before the surgery, and had many sleepless nights. And a couple of weeks after the surgery I crashed again , with days when I wouldn't want to look at myself in the mirror. But that passes as well. A bit of retail therapy helped though! Shopping for scarves and costume jewellery and spring bright coloured tops worked wonders for my mood and self image! Oh and makeup! I never was one for makeup beyond some lipstick before dashing out of the house. Now I don't go out without the works - eyeliner, eyeshadow, lipstick! Small morale boosters but they worked! I feel good about myself, and believe me your brain does get used to a different you after a short while. There may have been a few moments where I regretted my decision to push for a double mastectomy, and even getting a mammogram in the first place! But those moments were very short-lived. I know that I took the right decision and that I had very little option in the matter when considering my family history, mammogram and MR appearance. 

Good luck and God bless. Will be praying for you!

Tara17

https://www.youngsurvival.org/learn/resources-and-tools/audio-video-library-

Just wanted to share this above link --has a few power points and talks that i found helpful to review

MommyErin

How are you feeling Tara17? Hope treatment went well!

Castigame

today was AC#4. I was so happy to get it except neulasta of course.

I happened to tell Onco that I have not taken any steroids at home because I did not need it. Ativan has been taking care of any nausea I may have had. She had this look "how dare you not following my orders?" Needless to say she made me very uncomfy for the rest of the consultation. Steroid bottles say as needed as well as Ativan bottle says for nausea. Half way thru means not making any changes. So we wound up changing to nurse practioner whom i had far superior interaction.

I am proud that i made half way with minimal SEs. Lost about 10 pounds which is not bad. My self taught yoga sessions are going well. My PT tells me I am doing good. Height of my LE arm finger crawls were about half an inch lower than good arm. And only Taxol for part 2 instead of two for part 1. Cant wait to have my epsom salt scrub after neulasta is out. Life is not bad after all.

Tara17

mommyerin--i finished treatment # 9. Three more to go. Ready to be done because i am experiencing some cumulative side effects. I now have surgery scheduled for the first week of june. Hope all goes well with your treatment this thursday!

Rebamacfan1--glad you finished AC34 --is this the end of your chemo? Sorry you had a negative interaction wtih onc. Glad you had a good interaction with NP. Wish you all the best with taxol--keep us informed of how you do

kimburke

Hi ladies,

Checking in!

Just as I am starting to feel better and not as tired, I am getting ready for my 4th and final treatment. (Next week Wed 10th of May) Did my blood test today .

I had the Physiotherapist start this week. She says I have slight cording, its not too bad.We have been working on it. Its starting to feel better and not as pronounced.

Tara17 , sorry to hear your SE are becoming more cummulative . Hope its not too bad for you.

Bringiton2017- I get the retail therapy, only too well. I have to keep stopping myself. i have bought the silliest things since breast cancer and chemo. But I enjoy them. and yes, I get the makeup side of it too.

Happy Friday , hope you all have a good weekend.

Lordhelpmetoo

kimburke, so happy for you that you're reaching the end of the finish line. I finished mine 2 weeks ago.

Soxfan75

Just checking in... As of last Thursday, TCHP #3 of 6 is in the books for me. It's hard to believe I'm halfway through. They opted to give me the Neulasta this time unlike the previous two sessions, and so far so good. My SE's are minimal for now and I'm hoping to run a 5k on Saturday.

Lordhelpmetoo - Congrats on finishing you last round! What's next for you? Surgery?

kimburke - Good luck on your final treatment. Sending positive thoughts and good vibes your way!

Tara17 - Sorry you're having cumulative SEs. Hopefully they'll remain steady at least for the next three rounds.You're 3/4 of the way there!

Rebamacfan1 - Love your positive attitude!

Lordhelpmetoo

soxfan, glad the neulasta didn't give you much SEs. Half way, yay!! Next is my BMX on the 25th. Any advice

MommyErin

soxfan75- Yay for being halfway! I completed #3 of 6 on Thursday as well! Glad you got the neulasta this time. I've gotten it after each tx and it really hasn't bothered me at all.

So, I had my follow-up md Anderson appt with my onco and a surgery consult. They're going to treat me as stage IIIA and want to do mastectomy with ax dissection 3 weeks post chemo, followed by radiation. I'm BRCA1+ (gene mutation), so I'm opting for a double mastectomy, but I'm still deciding between options and would appreciate input if any of you have it...

Option #1: skin sparing mastectomy on cancer side only with TE, followed by reconstruction and prophylactic mastectomy on other breast 6 months after radiation completion. Pros: skin-sparing, excellent surgeons. Cons: traveling 4 hrs each way for each surgery.

Option #2: full bilateral mastectomy (or unilateral)followed by reconstruction 6 months to 1-year after radiation. Pro: can have this done by my surgeon in home town (she was trained at md Anderson, so also an excellent surgeon); have time to "shop around" for a great plastic surgeon to do reconstruction; could have hysterectomy done at same time (which I need to do soon-ish because of gene mutation). Cons: no breasts (or only 1 breast) for 6 months to a year; cosmetic results might not be as good.

Thinking about you all

Limonia

Hello everyone,

It's good to be back. (if I can say that?!). I've not had any specific dates for chemo starting yet bc post surgery issues with the wound. I'm at 6 weeks post op and the oncologist wants to move ahead with chemo maximum in 4 weeks from now - I meet her in 10 days to assess. I am, truth be told, more than a little freaked out, from the upcoming chemo (Fec-D) to the pain, injections, hair loss, all of it. In the time I have to get ready, I've gotten referrals to physiotherapists, occupational therapists, etc to help set a plan for my left arm cording (23 nodes out), extension, mobility and strength. I've already lost quite a bit of muscle mass, I just don't want to lose more, if possible. Everyone's postings are so helpful...

BringOn2017… - I saw myself a little in you - actually went out this weekend and bought a dress for first upcoming chemo session. Crazy, right? I hadn't intended to, but saw the dress and figured I would wear it (and bring socks, and blankets, etc..:-) ).

The hair thing is still freaking me out. With my drugs, it will fall out for sure. Tried on some wigs and will go back to retry once I;ve cut my hair a little shorter (it's long and crazy curly...sigh...)

MommyErin, here are some thoughts, however please remember that everyone's experience is totally different and ultimately you will make the best decision for yourself.

Option #1: skin sparing mastectomy on cancer side only with TE, followed by reconstruction and prophylactic mastectomy on other breast 6 months after radiation completion. Pros: skin-sparing, excellent surgeons. Cons: traveling 4 hrs each way for each surgery.

Option #2: full bilateral mastectomy (or unilateral)followed by reconstruction 6 months to 1-year after radiation. Pro: can have this done by my surgeon in home town (she was trained at md Anderson, so also an excellent surgeon); have time to "shop around" for a great plastic surgeon to do reconstruction; could have hysterectomy done at same time (which I need to do soon-ish because of gene mutation). Cons: no breasts (or only 1 breast) for 6 months to a year; cosmetic results might not be as good.

OK - if you have decided 100% on a double mastectomy then it can help to think about re: healing and surgery and anathesia and number of surgeries involved.

Have I understood that you are considering putting a TE on the side where they are radiating? I think I'm confused about some of the plans...

1. What reconstruction are you considering? (you don't need to answer, just that it sounds like you may have decided on someone specific).

2. The TE would go in the one side (with cancer)...and then have radiation?, and only then would be able (usually) to do any recon, including subbing the TE for an implant around 6 months after radiation.

3. If tissue expanders in radiated side, there is a higher likelihood of issues with skin, and TE/implants because of capsular contracture. I have done this myself, but it is hit and miss

4. Option #1 seems to offer 2 operations with 2 recoveries, TE, etc. perhaps speak with dr about what they recommend in terms of recovery and final outcomes?

5. The operation/s are quite something (especially considering the type of recon you're looking at). Are the doctors recommending mastectomy and hysterectomy at same time???

Some consideration: If you are BRACa 1 + think first:

1. what do you want to do? Do you know that you 100% want a double mastectomy because of recommendations and potential outcomes? If that's the decision, that can help lead the way...Knowing you are going to have a double then...what's the easiest (on your body) and most logical way for you to move forward with this intervention (#1 goal - keeping you healthy without cancer in other breast) and with the longer view of reconstruction?

2. When you know that, what reconstruction makes the most sense to you?

3. With these two >> what does the doctor see as the best options to get you to #1 & 2.

I know personally how crazy-making this decision making process can be. I also found the following site very helpful. I restricted my research online greatly. There is too much out there>> this is a good site and has relevant photos, etc.

http://www.breastreconstruction.org/index.htm

Finally, whatever decision you make will be the right one for you :-)

Limonia,

MommyErin

Thanks, Limonia.

I'm planning implant reconstruction.

Regarding option #1, it would be "delayed-immediate", so they would put in the TE but deflate it prior to radiation. I do 100% want the double. If I go with #1, they would do the non-cancer side during the second surgery so that I heal more quickly prior to radiation. MD Anderson surgeon seemed 100% comfortable with this process.

Hysterectomy is on the table if I'm doing a flat mastectomy (since that mastectomy apparently is quicker recovery than delayed-immediate).

I'll definitely check out the link. So much to consider

Tara17

bringition --i définitely hear you about the power of retail therapy!

Kimburke --wishing you all the best for your last and final treatment tomorrow .!

Soxfan 75 --exciting to reach the half way mark! Glad the neulasta is working for you and i am SO inspired that you are planning to run a 5K!

Mommy Erin --so much to consider . Some thoughts for you ---sounds like you have met the Breast surgeon and the oncologist and not met a plastic surgeon yet? Since it appears that both reconstructions involve steps after radiation, --i would Suggest that you should meet a reconstruction surgeon to get their thoughts about reconstruction following radiation? Radiation can make plastic surgery difficult and the plastic surgeon may have some strong ideas about sequencing of operations in relation to radiation as well --so maybe best to meet the rad onc and plastics people and then make your decision armed with more information ? Since you are still going through chemo, you have th etime to get a few more consul-i feel plastics can certainly help youmake the decision and knowing the plastic surgeon you are going to use even before you start the surgical process and liking them can give an additional peace of mind.

Lordhelpmetoo ---you shoudl go back and read soxfan post about mastectomy ---its full of great advice! I wish i knew how to pin that post. I have cut and paste part of that post to the header post on this forum ( soxfan 75 , hope thats ok with you)--so that everyone can access that great advice right on the first post of this forum.

Limonia --i am sorry that you have had all these complications after surgery --i am glad yo are proactively getting help for each one of these , i am hoping that PT helps you gain your muscle mass, i am sure it will come back with time and work, keep up your proactive attitude and do keep us informed

I finished treatment # 10 this week ,two more weeks to go and then i am scheduled for mastectomy on june 7th . Will ask everyone for their good wishes before mastectomy

Hugs to all

Tar

Castigame

I just cannot stay from my BC sisters. I have three a lot older sisters but none understand about BC. They say things such as mom didnot get much tired. Sis.also.said twice chemo is a lot easier now i heard I have to spell it out every time mom sure did not get Dose Dense AC with neulasta. She only got Taxol weekly. I will be getting taxol DD. Mom had lumpectomy w radiation no chemo.

Anyone who will be having surgeries especially after chemo, surgeries tend to be less taxing than chemo in my opinion. You are highy likely to cry at scars.Cry and curse at them as much as possible. Wish good and speedy recovery. Please remember to do PT routine every day.

On another note, please take advantage of all the benefits insurance company has to offer. Ex1. Those who are at risk with lymphedema, get maximum PT asap. Also, I found out I get flexitouch pump compliment of United Healthcare. It looks somewhat bulky but looks like a wonderful massage machine for LE prevention.

Ex2. I get reimbursed $50 max per day $10,000 lifetime max for getting BC treatment. So far I was able to get.$500 reimbursed and about $250 pending. Based on my TX schedule, I am to get about $400 more. I felt victorious when I got the $500. Used some for lottery. Donated some to the hospital and gave some to another cancer patient. Dispersing the reimb is one of my therapies.

Anytime I get depressed bc this breast bomb/extended diarrehea gets too much, I tell myself, one life to live and only one choice to make.

It is a beautiful.day!

kimburke

Hi ladies,

Been a trying few days for me. Am so tired, maybe its also because I am off my diet and supplement regiment as well. My schedule is all topsy turvy.

My 11 yr old Shih ztu has been diagnosed with cancer. Lymphoma! Struggling to try and help him through to get him to a place (quickly) , in order to do chemo. I cant bear to put him to sleep just now.

I also did my 6 month check up ultrasound , on the remaining breast today. The technician took forever, like an hour , on one breast, between two different machines. I will get the result tomorrow am and then on to my final Chemo tomorrow afternoon. Wish me luck. Thanks for all your well wishes.

Am a bit tired, so I will connect again soon.

Be safe everybody , and keep strong and positive.

Lordhelpmetoo

kimburke, sorry about your doggy!I will definitely pray for quick healing. Good luck on your treatment as well

MommyErin

kimburke- So sorry about your pup! :-( Sending positive thoughts your way as you go in for your last chemo.

Castigame

kimburke, sending prayers for you and your dog

Soxfan75

MommyErin – Just out of curiosity… why would they deflate the TE prior to radiation? Isn't the whole point of a TE during radiation to help keep the skin from shrinking? I may have misread it. Tara17 is right – you should definitely meet with a plastic surgeon to get their input. Luckily mine works as part of a team with the oncologists and the breast surgeons and they discuss how they're going to move forward with each case.

Rebamacfan123 – Such a great outlook. I love those inspiring words!

Tara17 – Yay! Only two more to go!

Kimburke – Sorry to hear about your dog. Sending hugs! I hope you hear good news from the docs and that your treatment goes well today. I'll be thinking about you.

Limonia – Your concern about hair loss was my biggest concern through all of this. You may want to look into cold capping. There's a board on here dedicated to people that have used it. I'm halfway through chemo and I've lost only approximately 5-10% of my hair. I'm thrilled with the results so far. It isn't cheap ($379 - $500 per month depending on the company you use), but if your hair is really important to you, you may want to look into it. Everyone has different results…some women lose 20% and some lose 60%, but regardless of how much hair they've lost, most women seem to say they would do it all over again. Even those that lose a large percentage say most people can't tell; it just looks like they have thin hair. My onc said that even if I lose 80% of my hair it will be worth it because my hair will grow back in quicker. It takes a lot of effort, but in my opinion, it's totally worth it. You can check out "Cold Cap Users Past and Present, to Save Hair" on this site or feel free to ask me any questions.

Soxfan75

I just thought of a few more pieces of advice for anyone who is still facing surgery:

1.) Watch for cording (axillary web syndrome) post-surgery. It will look and feel like tendons or cords running under your armpit all the way down your arm. Don't hesitate to mention it to your surgeon so they can set you up with physical therapy to relieve it. It will really limit your range of motion if you don't take care of it.

2.) Look often at pics on the Internet of final reconstruction and/or healed mastectomy scars so you know what to expect. Your post-surgery chest will be a shock and I found that the more I researched my final outcome, the more comfortable I've felt with the journey. Thankfully so many BC survivors have shared their journey publicly to inspire the rest of us.

3.) My plastic surgeon told me to do two things to promote healing: a.) no caffeine (no chocolate, coffee, tea or even decaf) and, b.) take two 500mg tabs of Vitamin C. My healing has been amazing (except for one small spot on the skin-sparing side where the skin was scraped too thin.)

4.) Tissue expanders (if you're getting them) are much harder and rounder than implants. I've also been told they're heavier. Bikini season for me should be interesting.

5.) If you don't have help around the house for the first couple of weeks (or if you want to minimize how much help you have to ask for), think about some of things you use often that are normally stored up high and store them in a place where you'll be able to reach them easier. Things in a medicine cabinet, dishes, refrigerator items, etc. Remember, the range of motion will get better.

6.) Button ups, zip ups and loose clothing will be your friend. Before you try and wear certain clothing, think of how easy/hard it is to get into and keep in mind that it will likely be a little harder to get out of. You don't have to buy a whole new wardrobe, but I did find that when I wore something that had to be pulled over the head, it was much easier if the neck hole was wider and/or the material was stretchy.

Hopefully you'll find this information helpful.

Castigame

Went to hospital yesterday Gyn made it clear about his opinion which was total hysterctomy. I still want ovary removal with the tubes ony. Did endometrial biopsy which was painful. And I bled a bit. We both agreed any surgery will be done after BC treatments. Crossing my fingers for biopsy result.

Been trying walk 30 min in the morning and 30 min at night. Hard due to FL weather. Any chance I go to store w aisles, I try to go up and down. Also have been diligent about PT routine, scar massage and MLD. Excited about flexitouch pump.delivery early next week.

Really concerned about 4DD Taxol I am facing. Too many steroids to take. Bone pain since I have mild arthritis. Long bones have been making noises since AC#4. Taking too much calcium. My pill organizer.looks crazy!! Probably have to stock up Epsom salt. Got to pray for less bone pain

Lordhelpmetoo

soxfan, thank you so much for all this info! My BMX is may 25th. Getting nervous as the date approaches but I'm satisfied with my devidion

Tara17

kimburke --very sorry about your puppy, my understanding is that lymphoma is very treatable, so i do hope your pup has a good outcome. Hope your fatigue gets better soon

Mommy Erin ---keep us posted on your decision making process

Soxfan 75 --thank you so much for all the additional tips re surgery --very helpful!

Lord help me tooo--all the best for your surgery next week. Normal to get nervous, so glad you are satisfied with your decision

Have my unilateral mastectomy scheduled for june 7th. I have a question for all of you--for those of you who have undergone or will undergo mastectomy, did you ask your surgeons about nipple sparing mastectomy and what are your own thoughts about this ? Thank you so much for any thoughts you can share

BringOn2017

Hi Tara My BS and PS did mention nipple sparing mastectomy themselves, particularly on the prophylactic side where my areola was larger, meaning that they would need to remove more skin in order to remove the areola. My understanding is that nipple sparing can be done provided the lesion is not too close to the nipple. However, I just wanted a plain bilateral MX and said straight out that I didn't want to keep any more cells than actually necessary, and wanted to be able to say bye to future breast problems. Also I had read about nipple problems due to blood supply and didn't want to have anything that could possibly run into a higher complication risk. 

Put you in my shoes I got my histology result on the 23rd January, met my BS on the 2nd February, my PS on the 6th February, all still in a state of shock. Was given my surgical date for 22nd on 2nd February. Possibly was not even thinking straight! I spent every free moment reading the NCCN guidelines on DCIS risk, management etc. Until the 1st Feb, I was still convinced on being flat and fab (maybe not), but my radiologist who is also my friend, talked me into recon. (She knew me well enough to know that recon was now or never). So when I did get to BS and PS, while I had read all I could about DCIS, positive Family History etc, I had only read the basics of recon. Nipple sparing I had read even less about and I didn't want to go into something I hadn't read enough about.

I'm not unhappy I had the nipples removed. It's one thing less to worry about! I have been reading about nipple reconstruction and tattooing and am not very impressed about what I've been reading. Some people say the nipple recon last less than a year. Started reading about 3D tattoos but I would have to go overseas for that, and Vinne and Baltimore are very far away! So not quite sure whether I'll have my nipples reconstructed after my exchange. But that's many moons away. First I need the exchange. Then I need a hysterectomy and oophorectomy. Then we see from there.

So that's my tuppence worth. I have no regrets myself. However the decision has to be one you are ok with yourself. Since you have time, I would try and read as much as possible and then once you've weighed the pros (obviously keeping your nipple makes your breast and any recon, much more natural) and the cons (all things that can possibly go wrong and the stats regarding that), and then discuss with your surgeon, who can give you his/her take on all that. I'm sure there must be a forum on it on this site, and you can get other people's take on it all,

3dogs2cats1kid

Hi ladies. I started chemo 2/27 and am late to joining a group. I just had #4 and am experiencing a lot of perjeta diarrhea and some neuropathy in my feet (they feel like they are burning and freezing at the same time). I am wondering how others are dealing with these issues

I don't have surgery until probably July and have not made a decision about my options. I do appreciate everything that you are sharing on this site.

My thoughts and prayers go out to each of you.