Starting Chemo January 2015

loriekg

I'm doing good—thanks for asking SweetHope! My ankle swelling has disappeared. Just gearing up for #5 on Friday. How are YOU doing? Are you able to walk now? Glad to hear you're able to switch it up and try the weekly Taxol. Hope that does the trick!!

LCH033

Hello Ladies,

I feel like I've disappeared during AC4 and now Taxol has started and they also put me on Effexor for the hot flashes...yea...took those for 3 days and stopped! Made me care about Nothing and didn't want to move or eat or anything. I am feeling a little more alive today and just wanted to check on everyone and say "hello". I would rather deal with the hot flashes than feel like the life and all personality has been suck out of me. Ughhh!

Brandi, I think that's Great news and I hope the sushi and wine went down well and with much celebration!! I pray surgery goes perfectly and you can begin to put this behind you! {{{HUGS}}}

I wish I could reply to everyone but through the chemo brain and coming off the antidepressant Effexor (which has 5 pages of SE's!!) I am doing good to turn on the computer.

I feel like the first Taxol went well?? I have a really dry mouth and nothing tastes good and I have Zero appetite; however I think that was more the Effexor than the Taxol. Taxol 2 is this Thursday; every Thursday now for this week and 10 more then RADS. Seems like every "phase" is just something different; something we put up with and just get through to get to the other side! As my Dad said; we "are Survivors and Adapters faced with some of the most difficult decisions we shall ever face; and you simply put one foot in front of the other and do the best that you can!"

I think about you ladies every single day; and I feel bad for not having the mentality or energy to get on here and check in every day; but Please know you are all in my thoughts and prayers and I know I am never alone!

{{{{HUGS}}}}

Lara

loriekg

Hi Lara! I swear I was JUST thinking about you and hoping you were okay! Glad you are starting to feel human again! Effexor for hot flashes? Was that to make them go away? Yeah, I think I'd rather deal with the hot flashes than feel blah...but that easy for me to say since I haven't had any yet. But I keep waiting for them to show up! Hugs back!! --Lorie

LCH033

Hi Lorie; that' funny, guess we're on the same wave length. Yes, the Effexor was to help ease the hot flashes as I was having 25-30 a day and couldn't sleep and was making me nuts; and it lessened them and made them not as severe but I can't take the emotional and mental numbness!! So, I'll deal with them and hope with the Taxol maybe they will lessen on their own.

Hope you are doing well!!

Lara

PMR53

Lara-I am so sorry about the hot flashes. I won't complain about my 5 or so I have. They are uncomfortable and wake me up a couple of times a night.

I have my surgery date. Right side MX May 4th with TE. Glad to get it done but scared too for pain and immobility. I was thinking. I survived chemo, why would I be scared? Any suggestions or tips from all of you much appreciated. You are all my lifeline and got me through chemo ( as well as Special ). I bought a couple of those front closing wireless bras at Walmart. Do you go braless for a couple weeks after surgery or do they want you to have support?

Have had visiting my parents. Very blessed to have them!!! Fly home tomorrow.

Love to all

PMR53

Cherylfg

My cold is more in chest than anywhere else. My MO said it is going around (my kids and husband all had it) and many of the chemo patients have taken 6 weeks or more to get rid of it.

I agree that we have to take care of ourselves and think about our quality of life too. it can be easy to forget we are people too and not just statistics.

Cheryl

RV6gal

PMR53 - Glad you've got your surgery date set. I don't have any experience with the reconstruction part of surgery but my advice is to make sure you stay on top of any pain management. I was able to manage my surgery pain with extra strength Tylenol which I took regularly. I really didn't feel much pain actually. The thing I did find surprising is how tired I was for some time after surgery. Take it easy afterwards! That's great you had a wonderful visit with your parents!

cherylfg - Sorry to hear that it takes so long to kick the cold! I hope it comes to an end for you very soon.

LCH033 - Wishing you good luck on the Taxol regimen. Hopefully all go as well as the first one.

Sweethope - I hope that the smaller dose works well for you. I am hoping for the same on my last chemo Friday! I agree with many others here that quality of life is very important so if a smaller dosage or stopping chemo is the right solution then so be it!

Noor46 - 4 good days out of 21 is real tough. Good luck with your chemo tomorrow.

On a wonderful note, we found out which dog we are getting from our breeder today. A little girl puppy that we are going to call Bailey. We will pick her up on April 25th. Here's a picture of her from today at about 7 weeks of age:

Can't wait to get her!

Wendy

Beachbum1023

RV6gal, Bailey is adorable! What a pretty little face. You will have a great walking buddy! Cheryl

SweetHope

OMG, Bailey is such a cutie! I can almost feel those soft puppy ears. That picture should be framed.

loriekg

O M G...how ADORABLE is Bailey!?!  I love that little face! 

LCH033

OMG!!! Bailey is Adorable and I love that name!! What a gift! I love animals and miss my babies so much being away from home during this time; what unconditional love and comfort they give! Congrats!!

I can say today the antidepressant is out of my system and I don't feel so dead mentally and emotionally and I feel like life is creeping back! Yay!! However the joint and muscle aches are pretty intense since last night to where it was hard to sleep; that and a few hot flashes but not as bad as before. I took a 5 mg valium and tramadol but still keep waking up achy. I ate an egg and a piece if toast which is an improvement from yesterday when I didn't even care to eat; and I took another valium and tramadol and it seems to have eased some of the discomfort. I will admit my left knee and ankle is the worst and I am gimping like I'm 90!! Lol

Also, when I first get out of bed I feel like I am stepping on little needles however it goes away. I am taking Glutamine and B6 religiously; I also ordered some Glycerin to put with my tea tree lotion for my hands and feet as I've heard that helps? Any suggestions ladies? I also heard to keep nails clipped short and wear dark nail polish?

Cheryl, I hope your cold gets better soon! Anything on top of what we already deal with just weighs on you so I pray for that to clear up soon!

PMR; I was in surgery for 11 1/2 hours between the double mastectomy, lat flap, and temporary implants. I learned very quickly that I needed to take it slow and ask for help when I needed it. I was very sore and took Oxycontin on the bad days and Tramadol and/or valium on mild days. The healing process is slow but listen to your body and don't push it; listen to your doctor as to what to do and not do. Everyone is different; we heal different, we handle pain different; again, at the end of the day listen to your body and go slow. I pray your surgery goes well and you heal safely and quickly.

Hope you All have a Good day,

Lara

spookisgirl

Hi all,writing from hospital where I am under observation and receiving antibiotics for what appears to be a chest infection. Can't talk today, voice is gone an throat is killing me. Afraid to cough. Blood counts are ok, not fantastic but ok and fever comes and goes. I hope I won't be here long and that I will be ok to switch to taxol on Friday. Fingers crossed!

SweetHope

Lara, you might request a muscle relaxer. Flexeril helps me with bone pain when the pain med won't do it alone.

Spookisgirl, I am so sorry you are going thru this, but glad you are being tended to in a hospital. Glad your blood counts are ok and hope they rise with treatment. Could it be strep? That's the only thing I know that affects the throat that much. Please keep us posted.

XOXO Becky

Cherylfg

Spookisgirl- Feel better! Feeling sick on top of everything is the worst.

Bailey is so, so cute. I just want to hug her. Those eyes are so sweet.

So my nails are doing a weird thing. My MO said they might lift with Taxol but instead of lifting, they are bending down to my nail bed. There is a distinct line halfway up each nail where it is bending. Is that happening to anybody else? It doesn't hurt.

Cheryl

LCH033

Becky, thank you! I actually have some flexeril so I will try that! I didn't even think of that, thank you!

Spookisgirl; I'm glad you're getting the care you need and hope all is well soon!

I finally got a good nap in without 1 hot flash; 3 Whole Hours!! Whooo Hoooo!!!

Lara

jlstacey

Arghh! I
keep writing posts and losing them! I will have to summarize.

Brandi- I wrote a post to you saying you aren't a wuss and that I couldn't put it better than Marjo had. I'm glad you got your sushi and wine and celebrated the end of chemo! Good for you! I hope you are feeling well now. I managed to accidentally lose that post last Friday.

Rvgal- awww....Baily is adorable! I'm sure she is going to bring loads of puppy love! My cats sure have brought me lots of love.

SweetHope- I hope your pain is better.I'm glad you are able to switch to weekly Taxol. I would think it will be a lot betterfor you since you will be off Neulasta as well.

Becky- I hope you are out of the hospital soon!

This stupid computer is driving me nuts!!! Anyway, I have four nails lifting. I banged one of them this evening and made it worse.

I am having hot flashes too. I have an appointment with my gynecologist tomorrow morning and am going to have him check my hormone levels. The hot flashes aren't horrible, but I'm going to have them checked while I'm there.

We have decided to do a vacation between the end of chemo and my double mastectomy. It gives me something to look forward to and something to plan over the next month.

I think having the extra week between treatments has been restorative. I've been feeling pretty good for several days, especially as my cold has subsided so I'm very happy about that!

Jena

dstar

BAILY! She is super cute, that nose, glad she's yours RV6GAL. Spooksigirl, take it easy. Glad you are OK! Scary. Cherlyfg, no bending nails. I am using a nail strengthener to try to avoid the nail stuff but I have only had 3 taxol treatments so far. I do have a hot, red rash on the sides of my cheeks that morphing into acne or something. Uhg. I have now officially lost all of my femininity along with my eyebrows and eyelashes. I am going to have to wear a pink tutu and kitten heels so I feel still like a girl. But I took a long walk today, felt good didn't have to rest up the hills.

Every one else, keep on truckin. OK, I took meds for bone pain a little while ago. But also worked 8 hours today. A friend wrote "blessings come in thimble-sized increments. Follow that light." Good night friends.

Tennisfan

Bonjour! Preparing mentally for first Taxol on Friday. After all I read I am trying to hope for the best lol. My baby sister is coming along for moral support albeit I find it typically better to go it alone so that I don't feel like I have to manage others - can't help it lol. But we are built the same so that's ok...

Wendy, Bailey eyes... She is to live for ha ha.

I was just thinking where is TeriMP from Saskatchewan the other day?

Have a nice end of week, everyone else!

Tennisfan

Ps. Lara, I so hear you as I have now eealised that what I confused with being feverish and clammy all the time is in fact menopause which I thought for a long time were chemo SEs. I too threw the meds out after two days.

My hope is to live through it for the six months of chemo for my body to adapt and to go to a naturopath for relief of some kind after.

I asked someone in a reputable healthstore who said I needed to wait so I set the goal for end of chemo. Only 2.5 months of heat to go!!!

Seriouly I don't understand how can someone experience this in the summer. For sur I will have to remove my wig if 30 degrees and hot flashing so I am praying for if only a little hair. Otherwise I will shave it and go bald like Wendy and many of you.

I ended up volunteering to be a first respondant for my office floor after noticing the lack of AEDs, after coming back from a Muga test last week.

I just hope I have enough strenght in me for CPR practice as it is already demanding when I am normal!!!

But at least I convinced ghe office to buy more AEDs and a colleague to be first aid with me.

This is something I had on my list of things I wanted to do so... Done

SweetHope

Marjo, I hope you breeze through Friday's Taxol. You did so well on AC. And for many the SE's are fewer on Taxol. Please don't think you will have the same SE's as I have because: you are in much better shape than I, you are more active, it could have been the Neulasta and not the Taxol that caused more pain, and my knees have some degeneration already. I was foolish and I should have called my MO a day sooner than I did. Once I got the muscle relaxer, Flexeril, I perked up real fast.

Menopause is a whole 'nother animal! How about making some cute scarves out of that wick-away fabric? (A suggestion from my MO).

It is admirable that you are preparing to be a first responder. You go Girl!

thecolorpurple

good morning all! I am sorry I have been absent as of late.

I have been keeping up with all of you posts, though, and think of all of you every day and pray and send my very best as I know several of you are going through a lot of challenges.

Jenn, are you out of the hospital yet? I am so sorry you are going through this! Sweethope I hope your pain is resolving? Wendy, how are your feet? Brandi how are you feeling being off chemo, I hope you are seeing a reduction every day in side effects.

Marjo, I need to ask what is it like going through the dramatic effects of surgical menopause? I have an oopherectomy scheduled in a few months and am nervous about the hormonal roller coaster I will be riding or more accurately, the cliff I will be diving off of?

My MO recommends oopherectomy for her premenopausal node positive br ca patients with high estrogen and progesterone receptivity. I am not BRACA positive.This recommendation is based on the SOFT trial study which was published last fall in the New England Journal of Medicine. big study with even bigger implications. I am very nervous that the oopherectomy is going to make me a crazy lady as I have always been an extremely hormonal person re PMS and the like, and have dreaded menopause for some time, anyway. If it decreases my likelihood of recurrence, though, I will take my chances.

On another note, It sounds like some have gone to weekly taxane treatments to reduce SE s. I have done very well on weekly taxol so far. Feel human for the first time in months. I have been walking A LOT, hanging with friends and family, eating huge salads and generally just making my health and happiness número uno.

The icing during the infusion, glutamine and B supplementation seems to be working. No signs of neuropathy, nail issues or foot or hand skin problems. I recommend doing these prevention strategies if you aren't. I will say I am anxious to start running again and hiking on steep terrain, but it will wait. I am babying my feet, just taking very long walks on flat, soft surfaces. Most days I log 5-7 miles, though, unless I am working my night shifts, when all I do is sleep, work, sleep, work...

Thank you all so much for bearing with me in this long, rambling message. I miss you all. I apologize for my absence,

Love,

Kristin

thecolorpurple

Wendy! Bailey is the cutest baby ever! I am assuming her eyes will turn brown as she gets older?

Tennisfan

kristin, glad to hear from you! I am following your instructions to a T so I bought B1, B6 and B12 and taking 10mg of L glutamine (split in 2x 5 mg) per day. I started one week in advance in the hope to avoid neuropathy lol. Let me know if you think I should have more L Glutamine-I am taking the dosage from the product I bought.

Now, I suspect that if you currently run, as my gyn-ob said to me, exercise will be your salvation.

I manage pretty much everything by tennis. No tennis, bad PMS, physically and mentally. Lots of tennis, everything goes well.

About the actual surgery: absolutely no pain personnally. Also, I asked for 3 incisions instead of 5 and they did it. 3 months later you can barely see them.

For the hot flashes, I will wait post chemo to seek a naturopath. I have asked my family and friends to tell me if I get moody. So far I think that I get outraged faster AND I cry easier BUT at no specific time. I have not really tried to bite anyone's head off yet but it was never my style before either, despite my strong personality. Again, I ghink exercise is what is jkeeping me balanced.

Not much help to you I guess but that's my experience. Whether now or later you will have to get thru this so chemically or naturally...

Also everyone is different but I dress in no sleeves with a jacket so I can dress and undress every five minutes lol.

A bientôt

stillstruggling

Hello All. Just checking in and reading all of the posts. I am still under the weather from chemo #5.

RV, Bailey is the most adorable dog I have ever seen.

PMR, I have not worn a bra since December 9, 2014 the morning of my MX. I have heard some doctors want you to wear a compression vest or something after surgery but mine did not. It would be difficult for me to wear a bra with TEs in. I am not sure I will ever wear one again. With reconstruction your breasts don't need support. I guess if I wore sheer top would need one but I don't have a nipple yet so I'm not sure.

SweetHope, I had no idea that you could negotiate with MO. I am going to put my negotiating hat on at my next MO appointment. My last chemo is scheduled for April 27 and I am scheduled to receive 5 neulasta shots after that. I am hoping I can negotiate neulasta down from 5. I don't like those shots or their effects.

Spookisgirl, how are you doing? I am thinking about you.

spookisgirl

Hi all, writing from the hospital still, but doing better. Breathing much easier. Looks like it's just a bad chest virus, but they are loading me with antibiotics to be sure. Blood counts are going up and if they are up today I should be able to go home. I am going to try and negotiate to still start taxol on time Friday if I keep feeling better. I know my blood counts are ok for it (doc said so). So it is just the cold holding it back and that seems to be leaving. I have been stressed about the switch and delaying it adds to that stress. Mentally I think it would be better to avoid that stress and get it over with, but I'll see what the doc says. I have also been having regular hot flashes and night sweats driving me crazy, especially after the final round of AC.

PMR53

spookisgirl- I didn't know you were in the hospital. I am sorry to hear this and hope your WBC go up!! So you can stay on track and get home.

Kristin- glad to know you are feeling better and you are amazing for all that walking. I have been walking but not that many miles.

Stillstruggling - thanks for getting back to me on the bra issue. I better check with SO or Plastic doctor to see what they prefer.

Tennisfan- I had a hyster in 2011 and was on Estradial monthly shots. My BC is estrogen positive so I had to quit estrogen replacement cold turkey. I have hot flashes and cry easily too. Exercise helps me. I will be put on hormone sucking drug after surgery.

RV. I love Bailey!! So sweet and adorable

Love to all!!

Patty

thecolorpurple

Marjo,

The recommended amount exceeds the dosage on the jar. It is 30 gm daily. You can take it 10 mg three times daily. My OD told me the dosage is important to get the anti-neuropathy effect, 30 gm is needed.

Thank you so much for the plug on exercise. It is a life saver and it makes me feel encouraged that it is helping you so much. I will keep you posted, but I am counting on that along with a high nutrient plant based diet in seeing me through the surgical menopause.

Off to make a huge salad for me and Jim.

Sunny skies here today!

Best wishes,

Kristin

PMR53

Lara Thank you for the Surgery Support!! 11 1/2 hours surgery!! How are you doing now?? Mine will be approx 3 to 4. I think that being under that long is enough. My concern is not getting the Big C. I get that with Every surgery. Oh and pain ugg

Brandi- I am ordering pink pockets for the drains. Adhesive pockets for any button up shirt or sweatshirt. Go to Curediva.com and type in pink pockets. There is also a YouTube video on how to strip and care for our drains we will come home with.

Patty

TeriMP

_{Hello ladies,}

_{I have not posted in about a month but have checked in daily and kept up with all your posts.  I am glad to hear that you are all doing well and have either started the last phase of your chemo treatments or have finished them all together.  I was invited to join a private FB page for young women with breast cancer; there was a lady who completed her treatment 1 week before me (same stage as myself but triple negative; I do not know if she had any nodal involvement), about a week after her last treatment she was having issues with her arm went for PET scan and it was revealed that she had mets to her brain.  Last week she had a stroke and was in a coma; I found out she passed away yesterday.  She did briefly come out of her coma and was lucid for about 5 hours and was able to spend that time with her family; although I did not know her personally (only briefly through the FB page) it has hit me quite hard and very upsetting.  I hate this cancer and that we/anyone has to deal with it!}

_{PMR53 - I have not had my reconstruction yet but I had 2 drains from my BMX; I had made a lanyard and safety pinned the drains to the lanyard that way there was no risk of me accidentally pulling on them; plus it was nice that it was adjustable for when I had baths.  I stripped my drains every couple of hours and right before measuring the fluid.} 

_{Spookisgirl - I am happy to hear that you are starting to feel better and your blood counts are back up.  I hope your cold breaks soon and you will be back on the road to recovery.  I absolutely agree with you that the added stress is should be avoided, it can affect many parts of our body and right now we need all our strength for healing.  Wishing you a speedy recovery and that you'll be back on your dancing feet!}

_{Stillstruggling - I hope you start feeling soon, how many more rounds do you have to go?  Hopefully you will be able to negotiate your MO down on the neulasta shots; I fortunately did not require them so I do not know what the SE are.}

_{Thecolorpurple - My ONC is also recommending that I either have an oophorectomy or chemically shut down my ovaries due to the positive results that came from the SOFT trial.  I meet with my ONC this Friday to discuss hormonal treatment, I haven't made up my mind which way I am going to go but I would like to know what the long term affects will be if I have my ovaries removed at the age of 31.  I am lucky in a sense that I don't really get PMS or mood swings but I am definitely in chemopause and have hot flashes (only at night when I am trying to sleep) almost every hour on the hour.  I am scared to see just how bad they will get if I rid my body of estrogen.}

_{Tennisfan - Thank you for checking up on me!  That is wonderful of your sister to join you for moral support, but I am like you and prefer to go it alone.  It's hard enough to battle this disease as it is; trying to keep others around us positive can take a lot out of us   That is great that you volunteered and we able to get your employer to purchase AED's!  I hope your MUGA went well and that you will breeze through your treatment on Friday!!}

_{Sweethope - I hope you are doing good and your pain is subsiding!}

_{Dstar - I too had the red rash on my cheek bones (and back of hands) from Taxotere; I used a hydrocortisone cream on it and it went away.  Granted the rash on my hand was much worse than my face and it seems to have pigmented the skin a bit; I am hoping it will go away with time.}

_{Jlstacey - Wonderful news that you are feeling well and that your cold is subsiding.  That is great that you are planning a vacation between chemo and your surgery; it will be nice to get away and unwind!!  It will do a world of good for you physically and emotionally.  My husband and I are looking at getting away as well but unsure when as I do not know when I will be having my reconstruction surgery.  This year will be our 5th wedding anniversary, my husband dad and his wife will be having their 25th wedding anniversary and his aunt/uncle will be having their 30th; my husband's father is planning a trip for all of us to celebrate together so I'll have to wait and see what is happening with that.} 

_{Cherylfg - My nails aren't bending down into the nail bed but they are extremely sensitive (hurts to touch them); all my finger nails have an arched shaped red line across them (almost looks like bubbles under the nails); I cannot tell if they are lifting or not.  Feels like they are but doesn't look like it. I try to keep my nails as dry as possible and always wear gloves when doing dishes as they seem to hurt more when wet.   Now that they are growing out it kind of looks like there is a new nail growing under the old one; there is a bump on each nail where the old one meets the new one.  I hope I don't loose the nails but small price to pay.}

_{RVGal - That is a very cute puppy, makes me want to get another dog!!!!  Please posts more pics when you get her.}

_{As I mentioned above I too have been experiencing hot flashes, they were worse during chemo (all day/night) and the dexamethasone made me have horrible night sweats.  Now that I am done chemo the hot flashes have subsided but I still have them at night when I am trying to sleep.  I have not had a solid night's sleep since February.  I will be discussing this with my MO as I am sure it's not healthy to be awake all day and then have interrupted sleep at night.  I did read the SOFT results and they look very promising; I do not think I will go with an oophorectomy right now, I will try the pills that will stop my ovaries.  If I am able to handle menopause I will then look at surgery; I don't want to make any drastic decisions that I cannot go back on.  Other than the hot flashes I have been feeling pretty good, but the fatigue is definitely still there.  It is getting better but I do get tired very easily; I am hoping exercise will help with that.}

_{I meet with my plastic surgeon tomorrow to discuss my reconstruction (he uses a 1-stage tissue expander that stays in and acts as a permanent implant once filled to desired size).  I would like to have my surgery in Sept to give me the summer off to relax and get strong/healthy; my insurance company wants me to go back to work in June and then will give me sept - end of the year off recovery from surgery.  This has me quite stressed out as it will not have been a full year since my diagnosis; nor have I even began to deal with my emotions that cancer has caused.  I understand where they are coming from but at the same time I feel like they are ignoring that there is more to recovery than just chemo/surgery.  I will be discussing this with my MO on Friday and hope that she will agree to keep me off work for another year to complete all my surgery(s), and get better mentally/physically.}

_{I apologize for the long post and wish all you ladies the best!}

SweetHope

Teri, I am so sorry for the loss of your FB friend. Words can't express my concern on how this is touching you. Please know anytime you wish to talk about her, we are here to listen and hopefully comfort you. I wish I had more eloquent words to console you.