September 2013 Chemo Group

simplelife4real

Hockeymom, you look beautiful in your picture!  How many weeks pfc are you there?  I'm 3.5 weeks pfc and no sign of growth anywhere yet.  

PeacockGirl

OMG, once again..Michelle we ARE chemo sisters. I have been dealing with REALLY painful elbows and forearms for weeks now! My wrists hurt badly too. I suspect it's the ulnar nerve in our elbow and I attribute the wrists to just having extra fluid (getting very puffy easily at night, almost like I have temporary carpal tunnel). I do think it's left over nerve irritation from taxol. What has helped me is taking my B100 2x a day and the L-carnitine. I never did get glutamine but I suspect it would help too. Ibuprofen takes somewhat of the edge off and luckily the pain has subsided a bit in the last 2 or 3 days for me. For almost 2 weeks solid I felt like somebody was squeezing my arms as hard as they could. I constantly freak out about lymphedema too because my left side is affected more but NOPE it's not any different in size, shape or anything from my right non-cancer side. So freaky we are having some of the same issues but are you surprised? we really did have very similar experiences for each chemo session. and no stop that... it's not mets to bones. I'm 99% sure it's nerve irritation.

lighthouselady

Peacockgirl - Wow, ok, misery loves company!  I'm so sorry that you're dealing with this too, but I'm SO GLAD you're dealing with this too.  LOL   Makes me think you're right and it's chemo-related.  I stopped taking the B vitamins after chemo.  Thanks for mentioning that.  I'll get some and try it. I had some glutamine left over and I chunked it... thinking I was done with it.  Ha.  Joke's on me!  Thanks, chemo sister, for suffering with me.  LOL

simplelife - My hair really started coming in around 5-6 weeks PFC... but I had AC first and you did AC last, right?  So it might take yours a bit longer to start up.  Some people had hair start to grow back during Taxol, but I didn't.  Hope yours shows up soon!  If only the hair on my head would grow as fast as the hair on my legs!!!!

Cougarlicious

Art - if it helps any, I'm going through the same crappy news.  I started noticing my tumor growing yet again (last time was at the end of AC, after I delivered my baby, so I thought maybe it was due to the break in chemo or surge in hormones).  On AC it shrunk to a nub, then grew to 2cm.  On Taxol it shrunk to 1cm and lately I felt it larger.  So they did a MRI and it showed 1.8cm, ultrasound later showed only a tiny shrinkage from its original mass of 3.2cm.  So five months of chemo, and I only have a little shrinkage.  It was enough that my MO and BS both decided that I'm not finishing Taxol (even though I only have two left) and going straight into surgery.  Normally they wait 4-6 weeks after chemo to do surgery but they are trying to get me in this month.  I had also wanted a lumpectomy, and technically I still can get one, but after all this nonsense I'm over it.  I'm moving forward with BMX with TE reconstruction.  And it sounds like they will be recommending radiation too due to my age and fact that chemo still left behind a nice mass.  Ugh, 4 weeks of recovery and 6.5 weeks of radiation just sound like forever, especially when I have a newborn and toddler that I won't be able to pick up.

Oh well.  Maybe I should just focus meeting you all in Vegas instead!

Hockeymom - I love your picture!  You look great!  It hasn't hit me that I will start regrowing my hair again...I was perusing wigs the other day...how many months after chemo do you think it is before you can go out without people thinking you're a cancer patient?

VintageGal1111

Cougar  we may be almost on the same schedule.

 I am having the BMX with TEs coming up within 4-5 weeks. Then, like you the 6 weeks of rads after healing.

 I am wondering how my breast will look that has the big ole dimple (indentation) in it from the lumpectomy, wonder if that scar will look worse after BMX.

simplelife4real

Cougar, I'm sorry to hear about your tumor not responding to chemo very well.  It's good you are ER+ and have a targeted therapy that you can be doing after treatment.  Your doctors have more tools in their arsenal to fight those buggers.  Hopefully, all this will be a dim memory for you years from now and a story to tell you children.  I was severely ill with ulcerative colitis when my children were 1 and 2 years old.  I almost died from it more than once and I was in the hospital for over 150 days in one year.  I had written my will, made my funeral plans and read books about dying.  I had surgery to have my colon taken out and my parents came and took care of my children for several months.  I couldn't even begin to think of lifting my children.  Well,  my "children" are now 34 and 35. The oldest one vaguely remembers me being so sick.  When I got bc, they both told me that they thought if anyone can kick this beast, I can because of what I had gone through with ulcerative colitis years ago.  It's really hard being so sick with very young children, but you CAN get through this and live to talk about it with them in their thirties!  Hugs, Kay

BetterDay

Hi, all. I got the results from last Tuesday's biopsy last night. Benign. Phew! You might ask how I got medical results on a Saturday evening. I was told the results usually take a couple of business days and that I should have them by Friday. My SLNB is Monday, and I really wanted to make sure we had them before that, so I emailed my SO yesterday. To her credit, she responded the same day. But apparently she thought her nurse had already told me on Friday. Not so happy that they had my results and no one called to tell me. Wtf. Just another example of how people who aren't going through this don't understand the anxiety and stress we face when waiting for test results. Btw, this is the same nurse that scheduled my MRI biopsy and wound up canceling it, prompting a 4 hour wait for a new time slot.

It is funny, I am so, so happy about the benign result and that the other area of concern disappeared before the biopsy. It really just puts me back in the same position I was in all along though. But I am relieved it is not worse than I thought. At least I don't have to edit my bc.org signature block to add another diagnosis. Also, these last two weeks since my MRI have been miserable. The experience has totally confirmed and validated my BMX decision. I have very dense breasts (original tumor did not show on mammo) so if I opted for lumpectomy, I would be getting MRIs going forward. I've now had three false positives from MRIs. Between the fear of new diagnoses and the utter torture of MRI guided biopsies (it really is my version of a living hell) I don't want to keep doing that for the rest of my life.

So on to the SLNB on Monday and surgery Friday. Is the node biopsy really as bad as I've read? Some people have said it was worse than surgery. I know Simplelife is having surgery Thursday. Anyone else on the table this week? (Simplelife, just read your last post. Wow, what a story. You rock.)

Cougar, I'm really sorry to read your report. I am happy your doctors are responding quickly to the situation. I really hope the MRI was off and your path report comes back better than expected. Let us know when you get your surgery date. 

warrior70

Hi, all, checking in on Sunday morning.  Hockeymommy, you look great...not a day over 16!  Enjoy your vacation!

Peacock and LHL:  I have had some tingling and cramping...maybe some Taxol leftovers?  I have been eating really well and taking vitamins/supplements, but I need to start exercising a little more, and hopefully that will take care of it.

Betterday...benign!  The best news!

Cougar...sorry about path....maybe things will be better than expected.  Healing hugs.

Vegas continues to sound good (if I'm not doing recon then!)  and maybe i can get it together enough to post a pic sometime!

knightzoo

Thanks KJ, a nurse friend came over and took my catheters last night.  Glad to be rid of that fanny pack.  I am feeling better today, I set my alarm to get up and take meds, unlike yesterday, so I wasn't miserable this morning. 

My husband had to take kids out of town for hockey, so my mom has been staying here.  Cleaning and cooking, laundry and playing games with the kids, so nice!  Best news, my eye watering is significantly reduced!  Mainly just when I wake up.  So happy about that

My funny story: the first night I was home I woke up and was super hot, because my husband turned on the fireplace and fell asleep and we put my recliner right next to the fireplace.  Anyway, I bet I yelled 20 times and he didn't wake up.  So I started throwing pill bottles, eye drops...  Finally the Kleenex box woke him up.

simplelife4real

Betterday, I'm SO HAPPY to hear your news.  One less thing to worry about!

Knightzoo, I laughed out loud as I read your story about trying to wake hubby up!  I could just see that whole scene playing out.  Sounds like something that would happen with me and my husband.  He's hard of hearing to start out with and when he's asleep, he's really asleep.  Sounds like you are really appreciating having your mom there.  Moms can be wonderful to have around when you're recouping from surgery.  You can be pampered a bit!

Speaking of watery eyes,  my nose has been dripping like crazy without nose hairs!  I think I go through a box of Kleenex a day.    Drives me nuts...but if that's my biggest problem today, I'm in good shape.

kjsimpson

Betterday,
The node biopsy produced a VERY large bruise and was unconfortable.  However, it was nothing compared to surgery pain.  Surgery didn't produce nearly the bruising, but it was significantly more painful.

For those with elbow/arm pain, I strongly recommend physical therapy.  It has helped me tremendously!

Cougar,
You continue to be in my prayers. 

Knightzoo,
I hope it was a Kleenex box with soft corners.  ;-)

kjsimpson

For those of you interested in VEGAS in September, I have setup a survey monkey survey at the following link to help see what dates work best for folks, what hotels you are interested in, and what we should plan...

https://www.surveymonkey.com/s/N6ZM3MM

lighthouselady

Cougar - I'm sorry that the cancer seems to be defying your chemo. Ugh. I'm glad your doctors are on top of it and will get you into surgery ASAP. Get that stuff out of there!!! Have they said anything about doing chemo after surgery, too?  My MO mentioned it briefly but then said it didn't think I needed it.

Simplelife - WOW! Talk about a survivor. I'm so sorry you had to go through all of that when your children were so young, and I'm sorry that you are having to go through THIS now. Ugh.  What a great positive attitude you have!

Betterday - YAY for benign! That is the best word for a cancer patient. You must be soooooooooooooooooo relieved. I'll be thinking of you during your SLNB and surgery. I opted to not do the SLNB so I can't give any advice about that. I read some stuff on here about it before I decided whether or not I was going to do it, and some people said it hurt like crazy, and other people said it wasn't anything. I hope yours goes smoothly. I think you're making the right decision about BMX. I had dense breasts, too, and even at diagnosis my mammogram didn't show anything, and I had a 4cm tumor!

knightzoo - LOL at throwing things. That would be my husband, too. I can be up all night with a sick kid and he doesn't hear any of it. Glad you're feeling better. I noticed I did better when I set my alarm to take my pills. I loved having my mom here after surgery, too, and I think it took a load off of Hubby. He's been doing SO MUCH since my diagnosis and having her here was almost like a vacation for him. Well, except he had to work. LOL

KJ  - Thanks for setting up the survey.  I just submitted mine.  I pretty much checked every box, because I'm flexible about what we do and when we do it.    I just want to go.... get away, meet my KCA warrior friends, eat good food and do a little (or a lot) gambling!  

PeacockGirl

7 weeks PFC

kjsimpson

Yay, PeacockGirl!  Mine is just about the same. 

KBeee

peacockgirl and Hockeymom, Looking great!!!!!

Simplelife, I can't imagine all you have been through.  Wow!  

Cougar, So sorry to hear your results are mixed, but so glad they are trying to get you into surgery soon.

Betterday, Yahooooooooooo!  So glad to hear your results, but I would be furious with that nurse, and i would make a point of discussing it with your doctor at your next appointment, so they know the impact of their communication breakdown.  There is no excuse for that.  My SLNB was during my surgery, so they did the injection a couple hours before.  i did have a lymph node...non cancerous side... removed 2 years ago because it was swollen, and i could always feel it, making it worrisome.  It was not a big deal, but did have a bit of bruising also.

Knightzoo, LOL at throwing things.  My hubby never wakes up either.  The kids don't even bother going to him when he is asleep!  Glad to hear your pain is decreasing.

LHl, Are you taking tamoxifen?  I have on and off joint pain from that, but not as bad as you describe.  I hope you get relief.

Just found out at church this morning that my son will be confirmed the last weekend of Sept.  they are 90% sure of the date.  I told the youth director, i need to know the date asap!!!  Thanks KJ for setting up the survey monkey; I did fill it out.

Viji

Peacockgirl, mine is looking similar 10 weeks PFC, grey on the sides and dark on the top. So good to feel hair again.

Cougar, you are in my prayers.

lighthouselady

Wow Peacockgirl - how come if we're chemo sisters I don't have as much hair as you?????  LOL  You have a lot and it looks great!!!

I'm having a feeling sorry for myself night.  I went to bed and couldn't fall asleep (thank you cancer, for giving me that, too).  I had a dream last night that hubby slept with someone else.  I know it's never going to happen, he is loyal to the core.  But it's just my ugly low self-esteem rearing its ugly head.  Being bald for months, feeling tired every damn day and sore from surgery, having frankenfoobs..... Ugh.  Not to mention chemopause stealing my libido.  I hate complaining... because most of the time I feel pretty darn good.  I'm happy and optimistic and grateful to be kicking cancer's ass.  But then there are times like tonight when I just realize how much of me I've lost.  Blah.

VintageGal1111

I was thinking when I went to the BS last week to discuss my BMX & TEs I didn't have many questions. And that is because of you Gals & this forum! I know many Drs aren't too keen on it when we say "I researched online, I read it online, I got my info online" but because of your info & help & relating your experiences I really didn't have a lot of unknowns when I went for the consult. Thanks!

simplelife4real

Vintagegal, I agree.  I get most of my questions answered here....often before I even have them!

Peacock..Wow.  I have NO hair at 4 weeks pfc.  I would love it if I grew that much in the next three weeks.  I think mine might be slower because I finished with AC.

LHL...perfectly okay to vent here.  This is the place to do it! ((((hugs)))

checkers

I finished chemo on Dec 5, 2013 and started losing my eyebrows and eyelashes 6-7 weeks later.  Has anyone else experienced this?  Also, my nails are in terrible shape. They keep tearing and they are separating into layers, really annoying when trying to clip and file them. How long will this last?

lighthouselady

checkers - I started losing my eyebrows and lashes right towards the end of chemo, but they came back quickly.  I've heard of several ladies say theirs went away & came back several times after chemo finished.  My nails are worse now than they were during chemo.  I'm taking biotin for hair & nails.... if it's working, I'd hate to see what they'd look like without it!

checkers

lighthouselady,

Seriously! Went away and came back several times! I'm penciling mine in around the few that are left but may have to resort to temporary eyebrow tattoos.  The hair on my head is growing back fast and as soon as the weather around here warms up  (April if we're lucky) I'm going to abandon my wig!  May try out the biotin for my nails.  Thanks

SpecialK

checkers - cut your nails back as short as possible and use a clear nail hardener on them, like Sally Hansen.  Taxotere is very rough on nails and it may take a complete growing out for you to see much improvement.

PeacockGirl

simplelife, my hair started sprouting back while still on taxol so I got a bit of a jumpstart.... it is because you finished with A/C that your hair will take a bit.

as for eyebrows and eyelashes mine fell out a few weeks after I finished chemo but now finally I've got MAJOR sprouts of both. phew. that's all I wanted for so long. I think we lose them again because chemo sets the growth cycle to all at once when usually our eyebrows have all sorts of growth rates (lose a few each day, grow a few each day) ..makes sense how we can lose them again all at once.

Lighthouselady, ugh that's a terrible nightmare. Just don't dwell a second more on it, your husband loves you! but I know how it goes we have down days and we tend to wallow in them from time to time. I realize I'm having way less of them these days not being affected by those awful steroids anymore. man they just really put me thru a ringer of a roller coaster. That anti-depressant my ONCO prescribed (Elavil) did another job on me. I stopped taking it after 30 days, wasn't really helping me much anyway that I could tell. he said would help with nerve pain and night hot flashes. not really. just packed on 10 more pounds.

And speaking of weight I topped out on the RO scale today at my highest ever. Sucks. I'm officially 30 pounds heavier than where I like to be. On the plus side, I ran a whole mile without stopping outside (before the snowpocolypse happened in Oregon) the other day. it was slow but I did it and it didn't suck. I would love to get back to running 3 miles again. That was my go-to workout. Soon ..real soon.

To date I'm only taking Ativan at night to sleep..but think I can probably start cutting it in half soon. Sleeping MUCH better these days and taking naps too. Chemo (steroids too!) had completely robbed me of my ability to sleep for months...so glad that's over.

josgirl

BetterDay - WOOHOO! What a relief.  I have discovered since the beginning of this journey to celebrate not getting bad news,  It may not be good but it could be so much worse.  Funny how outlook changes.  I totally agree about MRIs - I had two and one false positive (although it was the only screening tool to really pick up my cancer - anf fibrodenoma).  I think having gone through a false positive I will be more realistic and (hopefully) less anxious about those results.  My mammo after finding the lump found a zillion calcium deposits so they basically threw it out (I was still breastfeeding at the time).  I don't know - all these screening results seem not as good as we are led to believe.  Not that I even would have been screened for another 6-7 years..... But so happy to hear of your results - poop on your nurse to not tell you asap - ridiculous they should know better.

Peacock Girl - I hear ya - I have gained at least 10 pounds (and I was trying to loose 10 before this all began).  Ugh - on top of everything else.  And I really believe (even though evidence does not seem to support) that all the medications I am taking is making it much harder to lose it.  But I am back to running so I am sure you will bounce back sooner than you think.

LHL - I think we are so hard on ourselves.  We expect that as soon as chemo is over we will start this steady rise towards feeling like we did before.  But I think while I am feeling better and better I have major down days/moments.  While rationally I realize that I cannot be without all down moments, they still take me by surprise.  Additionally, my dreams have been very strange lately too (losing my job, etc).  I think there is so much to handle and we have been down for so long that some of the issues have transferred to our subconcious so that our concious selves can cope.  I think we just need to understand this and not let the down moments impact us longer than necessary - at least that is where my effort is now (as opposed to not having any down moments).  Your husband is obviously wonderful!

KJ - Wow at least something has come from the BC bills! I will fill out the survery asap.

BabyRuth - hope the storm isn't as bad as last time - hope everyone is better prepared this time>>>>?

SimpleLife - wow.  It is good to hear that your young children barely remember the time you were sick but to be sick during all that time - yuck.  My brother has chrone's and discovered when  we were in high school - he was so sick.  He is still managing it every day.  But your story really made me feel better and that maybe 30 years from now I will be remembering this time with the hindsight survival can bring.  And imagine the progress in research and treatments there will be - maybe even a 'cure'.

Cougar - Like the others said at least your team is taking it seriously and watching you closely.  And you may be surprised about the lifting - I wasn't able to lift my daughter (18 months) like normal but was able to get her in and out of the car seat and such faster than I expected (maybe 2 weeks after surgery - but I did it on my good side).  She learned to climb stairs faster this way too....But I understand wanting to pick them up - I did a lot of sitting on the floor with her.....

Art - glad you have processed the information and that it may not be as bad as you thought.  I am sure there is some scar tissue / dead cancer cells in there too.  I am sure Natalie is sad that her choice was forced upon her when she wasn't expecting it. That's been one of my challenges with this journey - my choices have been taken away - or delayed - I have come to realize that mourning my lost choice is helpful for moving on. 

And in regards to the question about NB - I had a ALNB and it wasn't any worse than my lumpectomy site.  For what it's worth....

kjsimpson

One IMRT down. 29 to go.

I am going to spend 29 days thinking up new phrases for the acronym IMRT. 

Today's... Imagine Me Really Tough!!

lighthouselady

KJ - No imagination needed.   You're a cancer ass-kicker!  

Anonymous

Invincible, Mighty, Resilient and Tenacious!

kjsimpson

inspiring, Magnificient, Remarkable, Team!!