September 2013 Chemo Group

taguekids6 - just want you to give careful thought to wanting chemo if your onc does not advise it, and pay careful attention to the actual risk reduction percentages from receiving it.  It is important to note that chemo comes with significant, and potentially lifelong, risks, including permanent hair loss, neuropathy that interferes with ambulation, heart damage, and death.  It is carcinogenic, in and of itself.  It does not kill all cancer cells, those who have had chemo still have recurrence, new primary cancers and distant metastasis.  It is a difficult concept to wrap your head around, thinking that "more is better" but that is not the case with cancer treatment in all cases.  I understand wanting to throw the kitchen sink at cancer - but you need to look realistically at the potential benefit.  I am not trying to talk you out of having it, I just want you to understand that it doesn't work for everyone, and is not advisable in all cases.  I know that you need to make a decision that you can live with and hope there are clear cut answers for you.

SpecialK,

I know exactly what you are saying. Honestly, just expressing the mental torment going on in my head. I've read everything, trust me. I'm one of those gals that likes to scare the crap out of herself by reading EVERYTHING out there.

If my Onc doesn't think I should, I will not be doing chemo. He is actually an assistant professor at Rush Univ., so I'm going to completely trust his judgement. He's at the fore front so to speak. I just war with my heart and brain about throwing the kitchen sink and everything else I can think of at it. Spewing my internal guts out to sound all big and bad, like I got this! NOT

I guess that's just all the fear talking.

Like I said before, grateful to have found you ladies. Your hearts are really out there for people. Thank you.

Kimberly

Have to back you up on your thoughtful comments, SpecialK. Taguekids6, this is the point in time to really quiz your oncologist and carefully weigh his or her opinion.



While all of us here can offer our own perspective from our very personal situations, it's your oncologist that will know every detail of your case, your health status and has the professional knowledge that comes from intensive training and years of experience.



It's their opinion and your own, as well as potentially any other doctors you choose to consult, that have to be the ones you ultimately get your best guidance from; not anyone else, no matter how well meaning they are.

Chemo delayed a week so I can get over my cold, yay!!!  So relieved...

Kimberly, I wish you much strength and clarity in making your decision, this is a very hard time.  I don't want to throw something else at you, but also be prepared for the possibility that your onc will give a slightly vague opinion and then leave it up to you - that happened to me when it came to my mx.  I went in thinking the surgeon would declare what I should do, but he really didn't, he left it up to me.  My suggestion in that case is that you sleep on it - don't answer right then when your family is with you and the environment is sterile and it's impossible to think.  Unless you KNOW in your heart right now what you want to do, don't feel like you have to answer while you're sitting in the office.  There's my 2 cents :-)

LHL I agree with whoever said the hair you've lost might be all you lose.  If you don't want to give up yet don't feel like you have to.  I'm on AC and while I still have little patches of hair on my head, it pulls out without resistance.  So if when you pull on your hair you hear/feel a "pop pop pop" as the hair just releases from the scalp, yeah, you're losing it, but if it holds fairly firm and is just shedding more than usual, who knows it might stay in.

Hugs to all :-)  Oh and yes, my avatar is from the wedding - I found a wonderful big ivory scarf that I tied according to the sweet british girl's YouTube video, lol, and then got a piece of cotton material that matched my bridesmaid dress that I wrapped over the top of it.  I'm sooo happy with how it turned out!

I had my first treatment today, AC infusion (port) and all went well. Actually took less time then they orginally told me.

I texted, took pics & went on FB quickly on my iPad but didn't have much time. I thought the hours would drag but it flew. I had REIKI, that was nice. Never even got a chance to pull out my Kindle or turn tv on.

I still feel good but a bit tired. Slight headache. (we went to Savers Thrift, stopped at my sister's work & visited my mother after)

Tomorrow I go for the shot. Hope I feel up to driving back over. next infusion is Oct 8.

Congrats VintageGal, glad to hear your first tx went well!  Rest up, stay hydrated, and treat any nausea as SOON as it hits, not when you just can't bear it anymore (learn from my mistakes, lol)!

Hi lovely ladies

First TC of 4 today and all went fine. Long day with the dignicap trial but feel very lucky to have this available to me and hoping it will work with keeping my hair.

Took my Chinese herbs this morning and hair, skin and nails vitamin, L glutamine, L lysine, B6, L carnitane, probiotic Claritin and herbs in the evening along with a cup of smooth moves tea and colax.

They started me with Benedryl and anti nausea then Taxotere for 90 mins. We had to stop once because I felt short of breath and lower back pain. If you feel anything different, anything, tell them straight away. We resumed again in 10 mins and the rest was fine. After this they did the Cytoxan for 60 mins. The cap was on for 30 mins prior to drugs then during the whole infusion and then another 1hr 45 mins after drugs. I iced my toes, hands and chewed ice during Taxotere. Garbled with baking soda,salt and water and doing the Biotene mouthwash oh and wearing the Sea Bands. Started with some yoga this morning and walked this afternoon when I got home. I feel good just a bit sleepy, which is actually quite nice. Used an IV for this time and was fine. Anyway that is my day and hoping to keep SE's at bay but will keep you posted. Thank you again for all the love and hope this info is of some value to those starting soon. 1 down 3 to go! we are strong, courageous and amazing. Love E

ekaterina - be a bit careful with any laxative or softener as some number of people have the opposite problem - I am saying this from experience, lol!  If this is your first tx you won't know which camp you fall into.  Also, drink, drink, drink!

wing48 - I would imagine that you are receiving chemo because of your nodal status - and you should assume that your cancer has been surgically removed and chemo is for any strays that have not set up shop elsewhere.

peacock - because triple negs don't have hormonal therapy to take adjuvently, surgery, chemo and rads are the standard of treatment.  As far as the ovary question - some people do use oopherectomy as a means of controlling estrogen, but estrogen does come from other sources in the body.  That is why post-menopausal women still take anti-hormonals.  I had a total hyst/ooph nine years prior to being diagnosed with breast cancer, so having no ovaries did not keep me from having breast cancer.  Also, removing ovaries from a pre-menopausal woman introduces other health concerns - osteopenia/osteoporosis and high cholesterol are pretty common.  It is a decision to weigh carefully, but there are a number of people who have oopherectomy after a BC diagnosis.

Diane49- So sorry you are getting hit with the nausea! I can so relate had issues 9 months during pregnancy. IV pole in my house too. I must say I had to laugh at your dog comment...I could so see my 120 pound dog being a big scared baby too.

Newbie question.  What is an "onco number"?  Is that the aggressiveness number they give your cancer when they run the labs on the biopsy samples?

Yes I did. Had to get bifocals and eyesight changes through out tx.

Glad it went well, EKaterina!

Hi Kimberly, I also had the choice of whether I did chemo or not. It only had a 3% value. It was a hard decision to make but 3% is 3%. My Dr kept saying just ray but everyone else said I would neef chemo because of my age.

I know some people cannot rock the bald look, but Batcatlady, you totally can!  I think sometimes hair distracts from how pretty someone's face and eyes are...you are one of them.  The look is startling to you, but as someone who has never seen you and just saw the link, I can say that you have a really, really pretty face and gorgeous eyes.  You look great.  Your wig is very cute too, but you can totally rock it without it if weather allows there.

Hello Everyone, this forum is getting so big it's hard to keep up. Here's an update and a few replies. I'm now at Day 20 post first treatment. My hair starting falling out Sunday morning. By Monday evening I wanted my husband to shave it off but he'd didn't want to. It's just as well that he didn't because I still have hair closer to the hairline, so with a scarf I still have light bangs, hair near my ears and on the lower back. I did trim all over with scissors. I wore a head covering out in public for the first time yesterday and posted my avitar on fb. I've been overwhelmed by how encouraging everyone has been towards me and my new look. I'm feeling really encouraged and blessed!

JellyK - you look so pretty in your scarf! I'm also glad you'll have another week to get over your cold before chemo.

taguekids6 - I was hoping I would not need chemo based on my oncotype score. My score was 24 which placed me in the intermediate range. In this range MO said it's still not known if chemo helps or not, studies are still trying to determine that. MO said the choice was up to me, but he said his job is to give me the best options to reduce my chances of the cancer coming back. AND he said that based on his experience and knowledge he thought it best I have chemotherapy. Another reason he advised this is because of the size of my tumor. I'm thinking that's because of the size there is more of a chance that cancer cells floated through my blood stream and they could grow elsewhere. I was so happy when there was no lymph node involvement but I've had to keep in mind that does not mean the cancer never left my breast, it only means it didn't establish residence in my lymph nodes. Prior to seeing MO I really didn't want chemo because I didn't want to make my body sick. I knew I'd have to be convinced of the value of chemo before agreeing to do it. I have become convinced because if I choose not to have chemo and the cancer comes back, it will most likely be harder to detect early and in advanced stages it may be impossible to treat. Also the side effects of the chemo that I'm on are worth enduring than the consequences of the cancer coming back. Of course having chemo is no guareentee that the cancer will not come back but it significantly reduces the chance. Also, my husband and family have honored whatever I've decided, BUT they are grateful that I've decided to have chemotherapy.