Starting Chemo October 2012

Marlene18 - I had my first chemo 16 days ago and for the last 3 days, every time I run my hands through my hair, strands of hair comes out...  it freaked me out the first time, and i thought I'd get used to it but it's kind of upsetting...so no you are not irrational... my nurse told me that even when you think you are prepared to lose your hair, it is very hard to handle when it happens.  My hubby just left on his Navy ship before the hurricane hits here so he's going to miss my 2nd chemo treatment day, but all I can think about is that I'll probably lose my hair while he's gone and when he comes back, I'll be bald.  I still have a lot of hair cause it's really thick but I was told that after the 2nd chemo, it will come out fast.  Cancer really does suck...  But, I keep thinking that if my hair wasn't falling out, then the chemo wouldn't be working... so if my hair is falling out then the chemo is killing my cancer so that's a good thing!  Keep up your spirits!   -Leigh

P.S. I have this weird rash on my hands that's making me insane. I have a feeling it's from the Herceptin which is disheartening since I need this ish for a year. It's like little teeny tiny bumps all over my fingers. Will point it out to the MO Tuesday when I'm there for labs. Always something!! At least it doesn't itch and itsn't painful and if you weren't looking for it you would never see it. It's weird to have lumpy feeling fingers  I couldn't get in to LGFB until the beginning of December because the next class is 11/5 and they said they need two weeks notice. My hair will be long gone by then. I still haven't found a wig I like. I think I'm being too picky. I'll try to take the one I got online to my hair girl and see if she can make it tolerable. Good night ladies! Enjoy your weekend with minimal SEs I hope! xoxo

Tori- funny how things are different with each MO. My MO wants me to only take tylenol. He said absolutely no motrin.  I can see the bleeding risk w/motrin (my platelets drop by like 100), but I also see the liver issue. I guess none of it is a great on our bodies!:(

I'm glad to see so many of you doing LGFB! I went a while a go but no one else showed up! I was the only one there. I was really looking forward to meeting someone there, but it was just me. Since it was just me -- we only did the makeup portion. I am happy that they provide this to women. This takes so much from you...being able to keep some sense of "normal" is nice. I usually don't wear a lot of makeup...is at all, but with wearing hats...I find that I try a little more on my face. Especially since I do more of a moisturizing routine and to combat that wiped out sick look.

Hope everyone is doing well! I still feel really fatigued and a little achey. Weather is due to change tomorrow, so that may be part of it. The highs are going down by like 20 degrees! Brrrr! My super deep, jetted tub will be a lifesaver!

Goodnight brave ladies!  

Day 8 post first treatment starting to feel like my old self cept after a 15 min walk I need to lay down. Lol.



Taste definitely effected. Have rash spots. Because my docs are out of town we are guessing it's a fungus and will see if treating for it works.



Effing port hurts still. Radiation site hurts. But think its all skin stuff. Gonna take a naproxen (prescribed) and hope it calms some of it down.



Eyelashes and eyebrow hairs coming out. Head shaving this weekend, no biggie as I've shaved it before, just cuz.



Green frill on etsy does sleeper hats; one seam lightweight cotton.



The power of all these souls is amazing. Lean on each other. Love each other. Remember you are so much more than your hair! Beauty can often only be found after shedding our skins.

Marlene, I'm one day behind you and the hair is all I can think about too.  Quite normal I'm sure.  I got my wig in the mail today so I'm ready, but I don't know how much I will really wear it.  To me it feels like it's lit up in neon saying "FAKE"!  Even though I know that most likely not one person would even notice!  Around the house and at work with people I know well, and who know about the cancer, I will probably just wear scarves and caps.  My head has been itching and my scalp is feeling tender.  It's the strangest thing... it's like my mind knows that it's going to happen, but my heart hasn't accepted it yet.  Sounds silly I know.  I've been told it's best to just shave your head when it starts falling out, but I'm not ready for that yet.

Caitgrace and MrsCich, thanks for the information on sleep caps. I'll look into that seller on Etsy, and also turbans.

Poke, my understanding was that only saline and silicone are available for use in the US- only Canadians have the option of gummies. Is this not true? If not, I might have to research the gummies! I was planning on going with the silicones over the salines because they last longer before needing a replacement surgery. I don't want to spend the rest of my life having replacement surgery every 5 years!

P.S. I meant to add that maybe some MOs don't want anyone using tylenol or NSAIDs during nadir because they would mask a fever, not for effect on platelets. I haven't needed any, so I never asked.

I hope everyone's SEs are calming down. So far I'm doing well (2 days post treatment #2). Went for a short run this morning. The first one since my surgery. It wasn't fast and it wasn't pretty but it felt great.

Caitgrace - love your post about the power of souls!

Marlene / Leigh - I'm on day 14 and the hair is coming out very fast but I'm holding onto that notion that the chemo must be working as mentioned by Leigh.  It's hard to trust that these chemicals they are pumping into us are doing their jobs and it seems that beyond all the SEs that this is the sign of it working.  I'm trying to build up my stamina with longer walks daily to be as good as can be before Treatment #2 next week, it's amazing that the accomplishment of managing a long walk feels like like I came first in a marathon!  

Ladies - I know the end of chemo is a long way off for most of us with the 6 cycles of treatment.  Once we get a little closer I'm curious as to what the MOs have planned for future screening (what technology, frequency etc.).  This is the part that makes me really sad when all the stats are for a 10 year prognosis, this isn't enough for me at age 39 I want much more time and want to make sure I get screened etc. appropriately.  I'm sure like many of you this came out of left-field and I found my lump as I am not a candidate for mammograms etc. based on age / risk.  At Stage IIIa, I don't want this to creep up on me again, this has been the part of being diagnosed with breast cancer my greatest sadness and worry.  So as we go through this journey together, your sharing of this information will be greatly appreciated. 

Wishing you all a feel good weekend.

Hi All,

I'm starting Taxotere-Cytoxan on Oct 29. Every thrid Monday for 4 cycles. No Neulasta.

Taking Dexamethasone (steroid) day before, with IV, and day after. Also fasting moderately (with oncologist's permission, 2 days before and one day after each infusion). Based on research by Valter Longo on limited fasting to help chemo work better with fewer side effects. (Should not be tried without doc's permission though since we are all different.)

Last day of chemo will be Dec 31st--Happy New Year! 

Have never done chemo or taken drugs stronger than a strong pain killer in my life (except whatever I might have been given during surgery), so this is pretty scary, especially when I read some of the bad experiences other's have had. However, I trust my oncologist. (Also we believe at the moment that I am Triple Negative, I don't have much choice about the chemo. Just hope it works.)

My very best wishes to everyone else who is going through this (and a lot more). 

Think happy thoughts! We will all get through this somehow.

Hap

hap k:  I am right there with you.  I start the same chemo Monday 11/5 for 4 treatments with the last one 1/7.  I am frantically trying to get everything together.  Bought my bio sil today for hair and plan to start that in the morning.  I put a call into Methodist hospital in downtown Houston because I heard they have a set up for the cold caps which I am going to try.  I got a prescription for steriods in pill form that I am supposed to take the day before and 3 days afterwards.  I asked about fasting and he told me absolutely not but I think I am going to cut back because I read that same research study.  I have to get all the details about the chemo to order the cold caps so lots to do.  My surgeon is supposed to put the port in this week but when I called Friday to schedule they said they did not think they could get me in.....seriously.....check in soon.

Poke, I'm getting TC X6 and was never offered the option of only 4.  I think it probably depends on your tumor's characteristics.  Mine was growing into the skin, and two of the lymph nodes had cancer starting to grow out of them, so they felt it was pretty aggressive.  If you had a smaller tumor with nice clean margins, and maybe only 1 or 2 positive nodes with micro instead of macro....  well that would be a much more borderline-for-chemo scenario and they might figure you should do it just to be sure, but no need for the maximum amount.  I do think that being HER2+ is generally considered a more aggressive cancer, too.

Poke - I am hoping to go to Methodist if I can get in.  Will call/visit tomorrow if I can.  The Breast center supposedly has a set up for cold caps so that is what I want to check out.

My onc and I talked about the chemo which is really a borderline call for my case.  My 1/3 sentinel nodes was borderline clusters and micromet.  The grade 3 is what we decided was the issue.  He said T/C is a gentle chemo "If there can be a gentle chemo..."  he is so funny.  He said he would only give me 4.  I told him if I did well and needed 6 that I would do it.  Stupid me.....I just want to make sure to get rid of anything that is lurking.

I feel good with my decisions.  My onc. got teary eyes when we decided on going forward with the chemo.  Every time I leave his office he gives me a big long hug.....which I often need.  I think because I live alone, divorced and trying to go through alot of the appts. on my own, he is trying to give support.  He asked about family support.  Siblings and parents live in Arizona but my 2 adult kids live here.  My daughter (29) tries to be supportive but I think she is freaking out and doesn't know what to do and say.  Her older brother (33) is calm, thoughtful and collected, just like my dad.  In fact I told him yesterday that he says almost word for word what Grandpa says on the phone when I give them updates. 

Thank you all.  Will check back later. 

My MO was deciding between ACx4 + Tx12 or TCx6 when my Oncotype came back at a lowly little 5.  Then the option of no chemo at all entered the equation but only for a very brief moment!  With extracapsular macro-mets in the lymph nodes the option of not doing chemo at all was really scary (in spite of the fact that a score of 5 indicates greater chance of recurrence with chemo than without!).

So, after the Oncotype came back so low and given my family history for serious heart issues, the MO (and his colleagues) settled on TC.  He said I could do TCx4 because the Oncotype was very, very low but that as long as I could tolerate it he'd prefer to do TCx6.  Right now I'm scheduled to do my last of TCx4 on December 20th but that will be extended to January 31st if I continue to tolerate it well.

There is no evidence of mets elsewhere in my body at this point but the MO is certain that the potential exists without chemo.  He said this wasn't an isolated micro-met in the lymph nodes and there are definitely cancer cells elsewhere in my body.  The trick now is to knock them out with chemo and radiation and then to starve any stragglers with the hormone-blocking.

Omeggo- sorry you have to be here, but you have come to a great support site. You did the right thing (in my opinion) in shaving head early. I'm day 16 and clumps coming out. Hard to watch. My hairdresser was supposed to come this morning, but she is sick with fever. So shooting for tomorrow. Wish I had been proactive. On a positive note- I found a site for head buffs and watched a video on how to use them. Sooooo simple and looks fun. Just type in head buffs on Internet. Buffwear is the original and best. The symptoms should start improving soon for you. Everyone is different, but anywhere from 1-10 days. GI is rough. Are you Her2+.? I see one says neg and one positive.